Each week should be a total of 500 words combined, 2 questions each week (8 questions total), books have been attached, include page numbers in citations, ABSOLUTELY NO PLAGIARISM
Week 1, Both questions should be a total of 500 words combined
1. From
Chapter 4: Respect for Autonomy (Beauchamp & Childress): For this question, I want you to reflect upon the Tuskegee Experiment discussed in Snead Chapter 1 and evaluate it through the lens of B&C’s seven elements of
informed consent (listed on p. 91-92). Which of these elements were either missing altogether or else undermined in the Tuskegee Experiment?
2. From
Chapter 4: Autonomy and Authority (Curlin & Tollefsen): For this question, please answer the following: (a) Briefly describe the
first and
second
misunderstanding about autonomy (pp. 84-87); and (b) At the end of the section entitled “Authority” (pp. 90-96), Curlin and Tollefsen conclude that, according to “the Way of Medicine, a doctor’s professional commitments and expertise give her the authority to decide what she is willing to do within the framework set by her own vocation as a healer. The patient’s authority is limited to requesting and them consenting to or rejecting the options made available by the doctor; it does not extend to positive entitlements justified by autonomous choices.” (p. 96) What does this quote mean, and do you agree with it?
Week 2, Both questions should be a total of 500 words combined
3. From Chapter 3: In Cases of Abortion (O. Carter Snead) and Chapter 7: Abortion and Unborn Human Life (Curlin & Tollefsen): First, compare and contrast how an anthropology of expressive individualism and an anthropology of embodiment understand the topic of abortion. Second, compare and contrast how the provider of services model (pp. 133 C&T) and the Way of Medicine (p. 134-135 C&T) approach requests for abortion.
4. After watching the video provided below, please offer some personal reflections (i.e., a few short paragraphs) on which argument(s) or point(s) stood out to you the most or that you found most intriguing:
Week 3, Both questions should be a total of 500 words combined
5. From Chapter 3: The Problem of Moral Status (Beauchamp & Childress): For this question, please answer the following: (a) BRIEFLY summarize the five theories of moral status outlined from pp. 54-62; (b) Express your thoughts about the paragraph on p. 62 that begins with “From ancient Hellenic times to the present…”; and (c) Adequately summarize the main points of the “Degrees of Moral Status” section from pp. 63-64.
6.
From Chapter 6: New Objections to the Humanity of the Early Embryo and Chapter 7: Further Objections (Curlin & Tollefsen): Was there an argument (or set of arguments) from these chapters that challenged your beliefs on this topic? Explain. If not, then please offer some personal reflections (i.e., a few short paragraphs) on which argument(s) or point(s) stood out to you the most or that you found most intriguing.
Week 4, Both questions should be a total of 500 words combined
7. From Chapter 4:
Assisted Reproduction (O. Carter Snead): Was there an argument (or set of arguments) from this chapter that challenged your beliefs on this topic? Explain. If not, then please offer some personal reflections (i.e., a few short paragraphs) on which argument(s) or point(s) stood out to you the most or that you found most intriguing.
8. From Chapter 6: Sexuality & Reproduction (Curlin & Tollefsen): For this question, please compare and contrast how the PSM and The Way of Medicine would approach the situation in the following video:
https://www.youtube.com/watch?v=O2RIvJ1U7RELinks to an external site.
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Principles of Biomedical Ethics
EIGHTH EDITION
Tom L. Beauchamp
James F. Childress
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PREFACE TO THE EIGHTH EDITION
Biomedical ethics, or bioethics, was a youthful field when the first edition of this book went to press in late
1977, now over forty years ago. The word bioethics was a recently coined term when, in the mid-1970s, we
began as a team writing in this field and lecturing to health professionals on the subject of moral theory and
principles. The field had virtually no literature that engaged moral theory and methodology. Massive changes
have since occurred both in the field and in this book. We have tried to stay as close to the frontiers of this field
as we could, even though the literature is now sufficiently extensive and rapidly expanding that it is difficult to
keep abreast of new topics under discussion.
For those who have stayed with us through the previous editions of Principles of Biomedical Ethics, we express
our gratitude for your critical and constructive suggestions—for us a constant source of information and insight,
as well as inspiration. Substantial changes have appeared in all editions after the first, and this eighth and
perhaps final edition is no exception. No new changes have been made in the book’s basic structure, but the
revisions are thoroughgoing in every chapter. We have attempted to sharpen our investigations, strengthen our
arguments, address issues raised by critics, and both reference and assess new published material. As in previous
editions, we have made changes in virtually every section and subsection of the book’s ten chapters.
Our clarifications, additions, expansions, and responses to critics can be crisply summarized as follows:
Part I, Moral Foundations: In Chapter 1, “Moral Norms,” we have clarified, augmented, and tightened our
accounts of the common morality, universal morality, and how they differ from particular moralities. We have
also clarified in this chapter and Chapter 10 the ways in which the four-principles framework is to be understood
as a substantive framework of practical normative principles and a method of bioethics. We have had a major
commitment to the virtues and moral character since our first edition. In Chapters 2 and 9 we have clarified and
modestly expanded our discussion of the nature and importance of moral virtues, moral ideals, and moral
excellence; and we have also revised our account of the lines that separate what is obligatory, what is beyond
obligation, and what is virtuous. In Chapter 3, “Moral Status,” we have revised our account of theories of moral
status in several ways and revised our presentation in the section on “Guidelines Governing Moral Status:
Putting Specification to Work.” We also engage some moral problems that have emerged about the use of
human-nonhuman chimeras in biomedical research. We there concentrate on whether functional integration of
human neural cells in a nonhuman primate brain (and the brains of other species) would cause a morally
significant change in the mind of the animal, and, if it did so, what the consequences should be for the moral
status of the animal if it were born.
Part II, Moral Principles: The principles of basic importance for biomedical ethics are treated individually in
Part II. In Chapter 4, “Respect for Autonomy,” we have expanded our presentations in several sections including
addition of an analysis of the distinction between the justification of informed consent requirements and the
several functions served by the doctrine, institutions, and practices of informed consent. Also added is a
significant clarification of our theory of intentional nondisclosure in clinical practice and research and the
conditions under which intentional nondisclosure is justified. In Chapter 5, “Nonmaleficence,” we have updated
and deepened our constructive proposals about “Distinctions and Rules Governing Nontreatment,” proper and
improper uses of the best-interest standard, and the place of anticipated quality of life in decisions regarding
seriously ill newborns and children. The sections on decisions about physician-assisted dying are updated and
arguments adjusted in light of global developments, especially in North America (Canada and several US states).
In Chapter 6, “Beneficence,” we deepened our analysis of policies of expanded and continued access to
investigational products in research as well as our discussions of the ethical value of, concerns about, and
constraints on risk-benefit, cost-benefit, and cost-effectiveness analyses. In Chapter 7, “Justice,” we updated and
expanded the discussions of theories of justice, with restructured presentations of communitarian theories,
capability theories, and well-being theories. Also updated are sections on problems of health insurance coverage,
social implementation of the right to health care, and the right to a decent minimum of health care—as well as
revised analyses of whether individuals forfeit this right through risky actions and what the fair opportunity rule
requires by way of rectifying disparities in health care. Chapter 8, “Professional-Patient Relationships,” has
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expanded sections on “Veracity” and “Confidentiality,” each of which incorporates new cases. The section on
arguments for intentionally limiting communication of bad news has been updated. In particular, we have
deepened our account of when physicians’ decisions to use staged disclosures are ethically justified.
Part III, Theory and Method: Chapter 9, “Moral Theories,” has an expanded section on “Virtue Theory” that fills
out our account of the virtues introduced in Chapter 2 and furthers the application of our theory to biomedical
ethics. We have also augmented and clarified the section on rights theory. Significant additions appear in the
section on “The Rights of Incompetent, Disadvantaged, and Unidentified Members of Populations.” In Chapter
10, “Method and Moral Justification,” we have strengthened our critiques of theories of justification in what we
call top-down models and casuistry. We have also expanded our accounts of common-morality theory, moral
change, reflective equilibrium, considered judgments, and the ways in which our theory is committed to a global
bioethics. Each of these parts has been recast to clarify and deepen our positions.
Finally, we want to correct some long-standing misinterpretations of our theory that have persisted over the forty
years of editions of this book. Several critics have maintained that our book is committed to an American
individualism in which the principle of respect for autonomy dominates all other moral principles and
considerations. This interpretation of our book is profoundly mistaken. In a properly structured account of
biomedical ethics, respect for autonomy has no distinctly American grounding and is not excessively
individualistic or overriding. We do not emphasize individual rights to the neglect or exclusion of social
responsibilities and communal goals. We do not now, and have never, treated the principle of respect for
autonomy in the ways several of our critics allege. To the contrary, we have always argued that many competing
moral considerations validly override this principle under certain conditions. Examples include the following: If
our choices endanger public health, potentially harm innocent others, or require a scarce and unfunded resource,
exercises of autonomy can justifiably be restricted by moral and legal considerations. The principle of respect
for autonomy does not by itself determine what, on balance, a person ought to be free to do or what counts as a
valid justification for constraining autonomy.
Our position is that it is a mistake in biomedical ethics to assign priority a priori to any basic principle over other
basic principles—as if morality is hierarchically structured or as if we must value one moral norm over another
without consideration of particular circumstances. The best strategy is to appreciate the contributions and the
limits of various principles, virtues, and rights, which is the strategy we have embraced since the first edition and
continue throughout this edition. A number of our critics have mistakenly maintained—without textual warrant
—that our so-called principlism overlooks or even discounts the virtues. We have given a prominent place in our
theory—since the first edition—to the virtues and their significant role in biomedical ethics. We maintain and
further develop this commitment in the present edition.
Fortunately, we have always had a number of valuable—and often constructive—critics of our theories,
especially John Arras, Edmund Pellegrino, Raanan Gillon, Al Jonsen, Stephen Toulmin, Michael Yesley,
Franklin Miller, David DeGrazia, Ronald Lindsay, Carson Strong, John-Stewart Gordon, Oliver Rauprich,
Jochen Vollmann, Rebecca Kukla, Henry Richardson, Peter Herissone-Kelly, Robert Baker, Robert Veatch, Tris
Engelhardt, Robert “Skip” Nelson, and Neal W. Dickert. Our book owes a great deal to these critics and friends.
We again wish to remember with great fondness and appreciation the late Dan Clouser, a wise man who seems
to have been our first—and certainly one of our sternest—critics. We also acknowledge the penetrating
criticisms of Clouser’s friend, and ours, the late Bernard Gert, whose trenchant criticisms showed us the need for
clarifications or modifications in our views. We also thank John Rawls for a lengthy conversation, shortly before
his untimely death in 2002, about communitarian and egalitarian theories of justice that led to significant
improvements in our chapter on justice.
We have continued to receive many helpful suggestions for improvements in our work from students,
colleagues, health professionals, and teachers who use the book. Jim is particularly grateful to his University of
Virginia colleagues: the late John Arras, already mentioned; Ruth Gaare Bernheim; Richard Bonnie; and the late
John Fletcher for many illuminating discussions in team-taught courses and in other contexts. Discussions with
many practicing physicians and nurses in the University of Virginia’s Medical Center, on its Ethics Committee,
and with faculty in the Center for Biomedical Ethics and Humanities have been very helpful. In addition, Jim
thanks the faculty and graduate students of the Centre for the Advanced Study of Bioethics at the University of
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Münster for gracious hospitality and vigorous and valuable conversation and debate, particularly about
paternalism and autonomy, especially during extended visits in 2011 and 2016; Bettina Schöne-Seifert, Thomas
Gutmann, and Michael Quante deserve special thanks. Jim also expresses his deep gratitude to Marcia Day
Childress, his wife for the last twenty-two years, for many valuable suggestions along with loving and unstinting
support throughout the preparation of the eighth edition as well as the preceding three editions.
Tom likewise wishes to thank his many colleagues in Georgetown University’s Philosophy Department and
Kennedy Institute of Ethics, as well as his colleagues in research at the Berman Institute of Bioethics of The
Johns Hopkins University. Henry Richardson and Rebecca Kukla have been penetrating, as well as constructive,
critics from whom several editions of this book have greatly benefited. Between the sixth and seventh editions,
Tom benefited hugely from his work with colleagues at Johns Hopkins on an NIH grant to study the need to
revise our understanding of the research–practice distinction: Ruth Faden, Nancy Kass, Peter Pronovost, Steven
Goodman, and Sean Tunis. When one has colleagues this talented and well informed, multidisciplinary work is
as invigorating as it is instructive.
Tom also wishes to express appreciation to five undergraduate research assistants: Patrick Connolly, Stacylyn
Dewey, Traviss Cassidy, Kekenus Sidik, and Patrick Gordon. Their research in the literature, their editing of
copy, and their help with previous indexes have made this book more comprehensive and readable. Likewise,
Jim wishes to thank three superb research and teaching assistants, Matt Puffer, Travis Pickell, and Laura
Alexander, for their helpful contributions. Other teaching assistants in a lecture course at the University of
Virginia that used this book also made valuable suggestions.
We also acknowledge with due appreciation the support provided by the Kennedy Institute’s library and
information retrieval systems, which kept us in touch with new literature and reduced the burdens of library
research. We owe a special debt of gratitude to Martina Darragh, who retired as the last chapter of this eighth
edition was being completed. Martina gave us help when we thought no help could be found.
Retrospectively, we express our gratitude to Jeffrey House, our editor at Oxford University Press for the first
thirty years of this book. Jeff encouraged us to write it before a single page was written, believed in it deeply,
and saw it through all of its formative editions. He was an emulable editor. We also thank Robert Miller for
efficiently facilitating the production of the recent editions of this book.
We dedicate this edition, just as we have dedicated each of the previous seven editions, to Georgia, Ruth, and
Don. Georgia, Jim’s beloved wife of thirty-five years, died in 1994, just after the fourth edition appeared. Our
dedication honors her wonderful memory and her steadfast support for this project from its inception. Tom also
acknowledges the love, devotion, and intellectual contribution to this book of his wife, Ruth Faden, who has
been the deepest influence on his career in bioethics, and salutes Donald Seldin, a brilliant physician and an
inspiration to Tom and to biomedical ethics since the early years of the field. Don passed away at age ninety-
seven in 2018, when we were in the midst of preparing this eighth edition. He will be sorely missed, and never
forgotten.
Washington, DC, and Chilmark, MA T.L.B.
Charlottesville, VA J.F.C.
January 2019
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1
Moral Norms
In the last third of the twentieth century, major developments in the biological and health sciences and in
biomedical technology strikingly challenged traditional professional ethics in much of clinical medicine,
nursing, and biomedical and behavioral research.1 Despite a remarkable continuity in medical ethics across
millennia, the widely revered Hippocratic tradition could not adequately address modern concerns such as
informed consent, privacy, access to health care, communal and public health responsibilities, and research
involving human subjects. Professional ethics was also ill equipped to provide an adequate framework for public
policy in a pluralistic society.
In this book, we acknowledge and draw from the great traditions of medical ethics,2 but we also draw from
philosophical reflections on morality. This approach helps us to examine and, where appropriate, challenge
common assumptions in the biomedical sciences, health care, and public health.
NORMATIVE AND NONNORMATIVE ETHICS
The term ethics needs attention before we turn to the meanings of morality and professional ethics. Ethics is a
generic term covering several different ways of examining and interpreting the moral life. Some approaches to
ethics are normative, others nonnormative.
Normative Ethics
General normative ethics addresses the question, “Which general moral norms should we use to guide and
evaluate conduct, and why?” Ethical theories seek to identify and justify these norms, which are often referred to
as principles, rules, rights, or virtues. In Chapter 9 we examine several types of general normative ethical theory
and offer criteria for assessing them.
Many practical questions would remain unanswered even if a fully satisfactory general ethical theory were
available. The term practical ethics, as used here, is synonymous with applied ethics and stands in contrast to
theoretical ethics.3 Practical ethics refers to the use of moral concepts and norms in deliberations about moral
problems, practices, and policies in professions, institutions, and public policy. Often no direct movement from
general norms, precedents, or theories to particular judgments is possible. General norms are usually only
starting points for the development of more specific norms of conduct suitable for contexts such as clinical
medicine and biomedical research. Throughout this book we address how to move from general norms to
specific norms and particular judgments and from theory to practice.
Nonnormative Ethics
Two types of nonnormative ethics are distinguishable. The first is descriptive ethics, which is the factual
investigation of moral beliefs and conduct. It often uses scientific techniques to study how people reason and act.
For example, anthropologists, sociologists, psychologists, and historians determine which moral norms are
expressed in professional practice, in professional codes, in institutional mission statements and rules, and in
public policies. These researchers study phenomena such as surrogate decision making, treatment of the dying,
the use of vulnerable populations in research, how consents are obtained from patients, and refusal of treatment
by patients.
The second type of nonnormative ethics is metaethics, which involves analysis of the language, concepts, and
methods of reasoning in normative ethics.4 For example, metaethics addresses the meanings of terms such as
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right, obligation, virtue, justification, morality, and responsibility. It is also concerned with moral epistemology
(the theory of moral knowledge), the logic and patterns of moral reasoning and justification, and the nature and
possibility of moral truth. Whether morality is objective or subjective, relative or nonrelative, and rational or
nonrational are prominent questions in metaethics.
Descriptive ethics and metaethics are nonnormative because their objective is to establish what factually or
conceptually is the case, not what ethically ought to be the case or what is ethically valuable. For example, in
this book we often rely on reports in descriptive ethics when investigating the nature of professional conduct and
codes of ethics, current forms of access to health care, and physician attitudes toward hastening the deaths of
patients who have requested aid in dying. In these investigations we are interested in how such descriptive
information assists us in determining which practices are morally justifiable as well as in resolving other
normative issues.
THE COMMON MORALITY AS UNIVERSAL MORALITY
In its most familiar sense, the word morality (a broader term than common morality, which is discussed
immediately below in the section on “The Nature of the Common Morality,” and in more detail in Chapter 10,
pp. 444–57) refers to norms about right and wrong human conduct that are widely shared and form a stable
societal compact. As a social institution, morality encompasses many standards of conduct, including moral
principles, rules, ideals, rights, and virtues. We learn about morality as we grow up, and we learn to distinguish
between the part of morality that holds for everyone and moral norms that bind only members of specific
communities or special groups such as physicians, nurses, or public health officials.
The Nature of the Common Morality
Some core tenets found in every acceptable particular morality are not relative to cultures, groups, or
individuals. All persons living a moral life know and accept rules such as not to lie, not to steal others’ property,
not to punish innocent persons, not to kill or cause harm to others, to keep promises, and to respect the rights of
others. All persons committed to morality do not doubt the relevance and importance of these universally valid
rules. Violation of these norms is unethical and will generate feelings of remorse. The literature of biomedical
ethics virtually never debates the merit or acceptability of these central moral norms. Debates do occur, however,
about their precise meaning, scope, weight, and strength, often in regard to hard moral cases or current practices
that merit careful scrutiny—such as when, if ever, physicians may justifiably withhold some aspects of a
diagnostic finding from their patients.
We call the set of universal norms shared by all persons committed to morality the common morality. This
morality is not merely a morality, in contrast to other moralities.5 It is applicable to all persons in all places, and
we appropriately judge all human conduct by its standards. The following norms are examples (far from a
complete list) of generally binding standards of action (that is, rules of obligation) found in the common
morality: (1) Do not kill, (2) Do not cause pain or suffering to others, (3) Prevent evil or harm from occurring,
(4) Rescue persons in danger, (5) Tell the truth, (6) Nurture the young and dependent, (7) Keep your promises,
(8) Do not steal, (9) Do not punish the innocent, and (10) Obey just laws.
The common morality also contains standards other than obligatory rules of conduct. Here are ten examples of
moral character traits, or virtues, recognized in the common morality (again, not a complete list): (1)
nonmalevolence (not harboring ill will toward others), (2) honesty, (3) integrity, (4) conscientiousness, (5)
trustworthiness, (6) fidelity, (7) gratitude, (8) truthfulness, (9) lovingness, and (10) kindness. These virtues are
universally admired traits of character.6 A person is deficient in moral character if he or she lacks such traits.
Negative traits that are the opposite of these virtues are vices (for example, malevolence, dishonesty, lack of
integrity, cruelty, etc.). They are universally recognized as substantial moral defects. In this chapter we will say
nothing further about moral character and the virtues and vices, because they are investigated in both Chapter 2
and a major section of Chapter 9 (pp. 31–45, 409–16).
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In addition to the obligations and virtues just mentioned, the common morality supports human rights and
endorses moral ideals such as charity and generosity. Philosophers debate whether one of these regions of the
moral life—obligations, rights, or virtues—is more basic or more valuable than another, but in the common
morality there is no reason to give primacy to any one area or type of norm. For example, human rights are not
more basic than moral virtues in universal morality, and moral ideals should not be downgraded morally merely
because people are not obligated to conform to them. An undue emphasis on any one of these areas or types of
norms disregards the full scope of morality.7
Our account of universal morality in this chapter and Chapter 10 does not conceive of the common morality as
ahistorical or a priori.8 This problem in moral theory cannot be adequately engaged until our discussions in
Chapter 10, and we offer now only three clarifications of our position: First, the common morality is a product
of human experience and history and is a universally shared product. The origin of the norms of the common
morality is no different in principle from the origin of the norms of a particular morality for a medical or other
profession. Both are learned and transmitted in communities. The primary difference is that the common
morality has authority in all communities, whereas particular moralities are authoritative only for specific
groups. Second, we accept moral pluralism in particular moralities, as discussed later in this chapter (pp. 5–6),
but we reject moral pluralism, understood as relativism, in the common morality. (See the section in Chapter 10
on “Moral Change” for further clarification.) No particular moral way of life qualifies as morally acceptable
unless it conforms to the standards in the common morality. Third, the common morality comprises moral
beliefs that all morally committed persons believe. It does not consist of timeless, detached standards of truth
that exist independently of a history of moral beliefs. Likewise, every theory of the common morality has a
history of development by the author(s) of the theory.
Ways to Examine the Common Morality
Various statements about or references to the common morality might be understood as normative,
nonnormative, or possibly both. If the appeals are normative, the claim is that the common morality has
normative force: It establishes moral standards for everyone, and violating these standards is unethical. If the
references are nonnormative, the claim is that we can empirically study whether the common morality is present
in all cultures. We accept both the normative force of the common morality and the objective of studying it
empirically.
Some critics of our theory of the common morality (see Chapter 10) have asserted that scant anthropological or
historical evidence supports the empirical hypothesis that a universal common morality exists.9 Accordingly,
they think we need to consider how good the evidence is both for and against the existence of a universal
common morality. This problem is multifaceted and difficult to address, but in principle, scientific research
could either confirm or falsify the hypothesis of a universal morality. It would be absurd to assert that all persons
do in fact accept the norms of the common morality, because many amoral, immoral, or selectively moral
persons do not care about or identify with its moral demands. Our hypothesis is that all persons committed to
morality accept the standards in the common morality.
We explore this hypothesis about the empirical study of the common morality in Chapter 10 (pp. 449–52). Here
we note only that when we claim that the normative judgments found in many parts of this book are derived
from the common morality, we are not asserting that our theory of the common morality gets the common
morality perfectly right or that it interprets or extends the common morality in just the right ways. There
undoubtedly are dimensions of the common morality that we do not correctly capture or depict; and there are
many parts of the common morality that we do not even address.10 When we attempt to build on the common
morality in this book by using it as a basis for critically examining problems of biomedical ethics, we do not
mean to imply that our extensions can validly claim the authority of the common morality at every level of our
interpretation of this morality.
PARTICULAR MORALITIES AS NONUNIVERSAL
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We shift now from universal morality (the common morality) to particular moralities, which contain moral
norms that are not shared by all cultures, groups, and individuals who are committed to morality.
The Nature of Particular Moralities
Whereas the common morality contains moral norms that are abstract, universal, and content-thin (such as “Tell
the truth”), particular moralities present concrete, nonuniversal, and content-rich norms (such as “Make
conscientious oral disclosures to, and obtain a written informed consent from, all human research subjects”).
Particular moralities are distinguished by the specificity of their norms, but these norms are not morally justified
if they violate norms in the common morality. Specific moralities include the many responsibilities, aspirations,
ideals, sentiments, attitudes, and sensitivities found in diverse cultural traditions, religious traditions,
professional practice, and institutional guides. Explication of the values in these moralities sometimes requires a
special knowledge and may involve refinement by experts or scholars over centuries—as, for example, in the
body of Jewish religious, legal, and moral norms in the Talmudic tradition; well-structured moral systems to
provide methods for judgments and to adjudicate conflicts in Roman Catholic casuistry; and Islamic reliance on
Shari’ah-based principles. Each tradition continues today to elaborate its commitments through the development
of detailed, and hopefully coherent, systems of medical ethics. These elaborations are often derived from the
common morality, not merely from the scriptures of a particular religious tradition.
Professional moralities, which include moral codes and standards of practice, are also particular moralities.
They may legitimately vary from other moralities in the ways they handle certain conflicts of interest, research
protocol reviews, advance directives, and similar matters. (See the next section below on “Professional and
Public Moralities.”) Moral ideals such as charitable goals and aspirations to rescue suffering persons in
dangerous situations provide another instructive example of facets of particular moralities. By definition, moral
ideals such as charitable beneficence are not morally required of all persons; indeed, they are not required of any
person.11 Persons who fail to fulfill even their own personal ideals cannot be blamed or criticized by others.
These ideals may nonetheless be critically important features of personal or communal moralities. Examples are
found in physicians’ individual commitments or physician codes that call for assumption of a significant level of
risk in circumstances of communicable disease. It is reasonable to presume that all morally committed persons
share an admiration of and endorsement of moral ideals of generosity and service, and in this respect these ideals
are part of shared moral beliefs in the common morality; they are universally praiseworthy even though not
universally required or universally practiced. When such ideals are regarded by those who embrace them as
obligations (as they are, for example, in some monastic traditions), the obligations are still parts of a particular
morality, not of universal morality.
Persons who accept a particular morality sometimes presume that they can use this morality to speak with an
authoritative moral voice for all persons. They operate under the false belief that their particular convictions
have the authority of the common morality. These persons may have morally acceptable and even praiseworthy
beliefs, but their particular beliefs do not bind other persons or communities. For example, persons who believe
that scarce medical resources, such as transplantable organs, should be distributed by lottery rather than by
medical need may have good moral reasons for their views, but they cannot claim that their views are supported
by the common morality.
Professional and Public Moralities
Just as the common morality is accepted by all morally committed persons, most professions have, at least
implicitly, a professional morality with standards of conduct that are generally acknowledged and encouraged by
those in the profession who are serious about their moral responsibilities. In medicine, professional morality
specifies general moral norms for the institutions and practices of medicine. Special roles and relationships in
medicine derive from rules or traditions that other professions will likely not need or accept. As we argue in
Chapters 4 and 8, rules of informed consent and medical confidentiality may not be serviceable or appropriate
outside of medicine, nursing, biomedical research, and public health, but these rules are justified by general
moral requirements of respecting the autonomy of persons and protecting them from harm.
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Members of professions often adhere to moral guidelines such as rules prohibiting discrimination against
colleagues on the basis of gender, race, religion, or national origin (some of these guidelines now have legal
backing). In recent years formal codifications of and instruction in professional morality have increased through
codes of medical and nursing ethics, codes of research ethics, corporate policies of bioethics, institutional
guidelines governing conflict of interest, and the reports and recommendations of public commissions. Before
we assess these guidelines, the nature of professions in general needs brief discussion.
In a classic work on the subject, Talcott Parsons defines a profession as “a cluster of occupational roles, that is,
roles in which the incumbents perform certain functions valued in the society in general, and, by these activities,
typically earn a living at a full-time job.”12 Under this definition, circus performers, exterminators, and garbage
collectors are professionals. It is not surprising to find all such activities characterized as professions, inasmuch
as the word profession has come, in common use, to mean almost any occupation by which a person earns a
living. The once honorific sense of profession is now better reflected in the term learned profession, which
assumes an extensive education in the arts, humanities, law, sciences, or technologies.
Professionals are usually distinguished by their specialized knowledge and training as well as by their
commitment to provide important services or information to patients, clients, students, or consumers.
Professions maintain self-regulating organizations that control entry into occupational roles by formally
certifying that candidates have acquired the necessary knowledge and skills. In learned professions such as
medicine, nursing, and public health, a professional’s background knowledge is partly acquired through closely
supervised training, and the professional is committed to providing a service to others.
Health care professions specify and enforce obligations for their members, thereby seeking to ensure that
persons who enter into relationships with these professionals will find them competent and trustworthy.13 The
obligations that professions attempt to enforce are determined by an accepted role. These obligations comprise
the “ethics” of the profession, although there may also be role-specific customs such as self-effacement that are
not obligatory. Problems of professional ethics commonly arise either from conflicts over appropriate
professional standards or conflicts between professional commitments and the commitments professionals have
outside the profession.
Because traditional standards of professional morality are often vague, some professions codify their standards
in detailed statements aimed at reducing vagueness and improving adherence. Their codes sometimes specify
rules of etiquette in addition to rules of ethics. For example, a historically significant version of the code of the
American Medical Association (AMA) dating from 1847 instructed physicians not to criticize fellow physicians
who had previously been in charge of a case.14 Such professional codes tend to foster and reinforce member
identification with the prevailing values of the profession. These codes are beneficial when they effectively
incorporate defensible moral norms, but some codes oversimplify moral requirements, make them indefensibly
rigid, or make excessive and unwarranted claims about their completeness and authoritativeness. As a
consequence, professionals may mistakenly suppose that they are satisfying all relevant moral requirements by
scrupulously following the rules of the code, just as some people believe that they fully discharge their moral
obligations when they meet all relevant legal requirements.
We can and should ask whether the codes specific to areas of science, medicine, nursing, health care, and public
health are coherent, defensible, and comprehensive within their domain. Historically, few codes had much to say
about the implications of several pivotal moral principles and rules such as veracity, respect for autonomy, and
social justice that have been the subjects of intense discussion in recent biomedical ethics. From ancient
medicine to the present, physicians have generated codes without determining their acceptability to patients and
the public. These codes have rarely appealed to general ethical standards or to a source of moral authority
beyond the traditions and judgments of physicians themselves.15 The articulation of such professional norms has
often served more to protect the profession’s interests than to offer a broad and impartial moral viewpoint or to
address issues of importance to patients and society.16
Psychiatrist Jay Katz poignantly expressed reservations about traditional principles and codes of medical ethics.
Initially inspired by his outrage over the fate of Holocaust victims at the hands of German physicians, Katz
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became convinced that a professional ethics that reaches beyond traditional codes is indispensable:
As I became increasingly involved in the world of law, I learned much that was new to me from my
colleagues and students about such complex issues as the right to self-determination and privacy
and the extent of the authority of governmental, professional, and other institutions to intrude into
private life. … These issues … had rarely been discussed in my medical education. Instead it had
been all too uncritically assumed that they could be resolved by fidelity to such undefined principles
as primum non nocere [“First, do no harm”] or to visionary codes of ethics.17
The Regulation and Oversight of Professional Conduct
Additional moral direction for health professionals and scientists comes through the public policy process, which
includes regulations and guidelines promulgated by governmental bodies. The term public policy refers to a set
of normative, enforceable guidelines adopted by an official public body, such as an agency of government or a
legislature, to govern a particular area of conduct. The policies of corporations, hospitals, trade groups, and
professional societies are private, not public, even if these bodies are regulated to some degree by public policies
and sometimes have an impact on public policy.
A close connection exists between law and public policy: All laws constitute public policies, but not all public
policies are, in the conventional sense, laws. In contrast to laws, public policies need not be explicitly formulated
or codified. For example, an official who decides not to fund a newly recommended government program with
no prior history of funding is formulating a public policy. Decisions not to act, as well as decisions to act, can
constitute policies.
Policies such as those that fund health care for the indigent or that protect subjects of biomedical research
regularly incorporate moral considerations. Moral analysis is part of good policy formation, not merely a method
for evaluating existing policy. Efforts to protect the rights of patients and research subjects are instructive
examples. Over the past few decades many governments have created national commissions, national review
committees, advisory committees, and councils to formulate guidelines for research involving human subjects,
for the distribution of health care, and for addressing moral mistakes made in the health professions. Morally
informed policies have guided decision making about other areas of practice as well. The relevance of bioethics
to public policy is now recognized in most countries, some of which have influential standing bioethics
committees.18
Many courts have developed case law that sets standards for science, medicine, and health care. Legal decisions
often express communal moral norms and stimulate ethical reflection that over time alters those norms. For
example, the lines of court decisions in many countries about how dying patients may be or must be treated have
constituted nascent traditions of moral reflection that have been influenced by, and in turn have influenced,
literature in biomedical ethics on topics such as when artificial devices that sustain life may be withdrawn,
whether medically administered nutrition and hydration is a medical treatment that may be discontinued, and
whether physicians may be actively involved in hastening a patient’s death at the patient’s request.
Policy formation and criticism generally involve more specific moral judgments than the judgments found in
general ethical theories, principles, and rules.19 Public policy is often formulated in contexts that are marked by
profound social disagreements, uncertainties, and differing interpretations of history. No body of abstract moral
principles and rules can fix policy in such circumstances, because abstract norms do not contain enough specific
information to provide direct and discerning guidance. The implementation of moral principles and rules,
through specification and balancing, must take into account factors such as feasibility, efficiency, cultural
pluralism, political procedures, pertinent legal requirements, uncertainty about risk, and noncompliance by
patients. Moral principles and rules provide a normative structure for policy formation and evaluation, but
policies are also shaped by empirical data and information generated in fields such as medicine, nursing, public
health, veterinary science, economics, law, biotechnology, and psychology.
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When using moral norms to formulate or criticize public policies, one cannot move with assurance from a
judgment that an act is morally right (or wrong) to a judgment that a corresponding law or policy is morally right
(or wrong). Considerations such as the symbolic value of law and the costs of a publicly funded program and its
enforcement often may have substantial importance for law and policy. The judgment that an act is morally
wrong does not entail the judgment that the government should prohibit it or refuse to allocate funds to support
it. For example, one can argue without any inconsistency that sterilization and abortion are morally wrong but
that the law should not prohibit them, because they are fundamentally matters of personal choice beyond the
legitimate reach of government—or, alternatively, because many persons would seek dangerous and unsanitary
procedures from unlicensed practitioners. Similarly, the judgment that an act is morally acceptable does not
imply that the law should permit it. For example, the belief that euthanasia is morally justified for some
terminally ill infants who face uncontrollable pain and suffering is consistent with the belief that the government
should legally prohibit such euthanasia on grounds that it would not be possible to control abuses if it were
legalized.
We are not defending any of these moral judgments. We are maintaining only that the connections between
moral norms and judgments about policy or law are complicated and that a judgment about the morality of
particular actions does not entail a comparable judgment about law or policy.
MORAL DILEMMAS
Common to all forms of practical ethics is reasoning through difficult cases, some of which constitute dilemmas.
This is a familiar feature of decision making in morality, law, and public policy. Consider a classic case20 in
which judges on the California Supreme Court had to reach a decision about the legal force and limits of medical
confidentiality. A man had killed a woman after confiding to a therapist his intention to do so. The therapist had
attempted unsuccessfully to have the man committed but, in accordance with his duty of medical confidentiality
to the patient, did not communicate the threat to the woman when the commitment attempt failed.
The majority opinion of the court held that “When a therapist determines, or pursuant to the standards of his
profession should determine, that his patient presents a serious danger of violence to another, he incurs an
obligation to use reasonable care to protect the intended victim against such danger.” This obligation extends to
notifying the police and also to warning the intended victim. The justices in the majority opinion argued that
therapists generally ought to observe the rule of medical confidentiality, but that the rule must yield in this case
to the “public interest in safety from violent assault.” These justices recognized that rules of professional ethics
have substantial public value, but they held that matters of greater importance, such as protecting persons against
violent assault, can override these rules.
In a minority opinion, a judge disagreed and argued that doctors violate patients’ rights if they fail to observe
standard rules of confidentiality. If it were to become common practice to break these rules, he reasoned, the
fiduciary nature of the relationship between physicians and patients would erode. Persons who are mentally ill
would refrain from seeking aid or divulging critical information because of the loss of trust that is essential for
effective treatment.
This case presents moral and legal dilemmas in which the judges cite relevant reasons to support their
conflicting judgments.21 Moral dilemmas are circumstances in which moral obligations demand or appear to
demand that a person adopt each of two (or more) alternative but incompatible actions, such that the person
cannot perform all the required actions. These dilemmas occur in at least two forms.22 (1) Some evidence or
argument indicates that an act is morally permissible and some evidence or argument indicates that it is morally
wrong, but the evidence or strength of argument on both sides is inconclusive. Abortion, for example, may
present a terrible dilemma for women who see the evidence in this way. (2) An agent believes that, on moral
grounds, he or she is obligated to perform two or more mutually exclusive actions. In a moral dilemma of this
form, one or more moral norms obligate an agent to do x and one or more moral norms obligate the agent to do
y, but the agent cannot do both in the circumstance. The reasons behind alternatives x and y are weighty and
neither set of reasons is overriding. If one acts on either set of reasons, one’s actions will be morally acceptable
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in some respects and morally unacceptable in others. The withdrawal of life-prolonging therapies from patients
suffering from a wakeful unconscious state (formerly called a persistent, continuing, or continuous vegetative
state) is sometimes regarded as an instance of this second form of dilemma.
Popular literature, novels, and films often illustrate how conflicting moral principles and rules create difficult
dilemmas. For example, an impoverished person who steals from a grocery store to save a family from
starvation confronts such a dilemma. The only way to comply with one obligation is to contravene another
obligation. Some obligation must be overridden or compromised no matter which course is chosen. From the
perspective we defend, it is confusing to say that we are obligated to perform both actions in these dilemmatic
circumstances. Instead, we should discharge the obligation that we judge to override what we would have been
firmly obligated to perform were it not for the conflict.
Conflicts between moral requirements and self-interest sometimes create a practical dilemma, but not, strictly
speaking, a moral dilemma. If moral reasons compete with nonmoral reasons, such as self-interest, questions
about priority can still arise even though no moral dilemma is present. When a moral reason conflicts with a
personal reason, the moral reason is not always overriding. If, for example, a physician must choose between
saving his or her own life or that of a patient, in a situation of extreme scarcity of available drugs, the moral
obligation to take care of the patient may not be overriding.
Some moral philosophers and theologians have argued that although many practical dilemmas involving moral
reasons exist, no irresolvable moral dilemmas exist. They do not deny that agents experience moral perplexity or
conflict in difficult cases. However, they claim that the purpose of a moral theory is to provide a principled
procedure for resolving deep conflicts. Some philosophers have defended this conclusion because they accept
one supreme moral value as overriding all other conflicting values (moral and nonmoral) and because they
regard it as incoherent to allow contradictory obligations in a properly structured moral theory. The only ought,
they maintain, is the one generated by the supreme value.23 (We examine such theories, including both
utilitarian and Kantian theories, in Chapter 9.)
In contrast to the account of moral obligation offered by these theories, we maintain throughout this book that
various moral principles, rules, and rights can and do conflict in the moral life. These conflicts sometimes
produce irresolvable moral dilemmas. When forced to a choice, we may “resolve” the situation by choosing one
option over another, but we also may believe that neither option is morally preferable. A physician with a limited
supply of medicine may have to choose to save the life of one patient rather than another and still find his or her
moral dilemma irresolvable. Explicit acknowledgment of such dilemmas helps deflate unwarranted expectations
about what moral principles and theories can do. Although we find ways of reasoning about what we should do,
we may not be able to reach a reasoned resolution in many instances. In some cases the dilemma becomes more
difficult and remains unresolved even after the most careful reflection.
A FRAMEWORK OF MORAL PRINCIPLES
Moral norms central to biomedical ethics rely on the common morality, but they do not exhaust the common
morality. Some types of basic moral norms are treated in this section, especially principles, rules, and rights. The
virtues are the subject of Chapter 2, and the principles of primary importance for biomedical ethics are treated
individually in Part II of this book. Most classical ethical theories accept these norms in some form, and
traditional medical codes incorporate or presuppose at least some of them.
Principles
The set of pivotal moral principles defended in this book functions as an analytical framework of general norms
derived from the common morality that form a suitable starting point for reflection on moral problems in
biomedical ethics.24 These principles are general guidelines for the formulation of more specific rules. In
Chapters 4 through 7 we defend four clusters of moral principles: (1) respect for autonomy (a norm of respecting
and supporting autonomous decisions), (2) nonmaleficence (a norm of avoiding the causation of harm), (3)
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beneficence (a group of norms pertaining to relieving, lessening, or preventing harm and providing benefits and
balancing benefits against risks and costs), and (4) justice (a cluster of norms for fairly distributing benefits,
risks, and costs).
Nonmaleficence and beneficence have played central roles in the history of medical ethics. By contrast, respect
for autonomy and justice were neglected in traditional medical ethics and have risen to prominence in this field
only recently. In 1803, British physician Thomas Percival published Medical Ethics, the first comprehensive
account of medical ethics in the long history of the subject. This book served as the backbone of British medical
ethics and as the prototype for the American Medical Association’s first code of ethics in 1847. Percival argued,
using somewhat different language, that nonmaleficence and beneficence fix the physician’s primary obligations
and triumph over the patient’s preferences and decision-making rights in circumstances of conflict.25 Percival
understated the critically important place of principles of respect for autonomy and distributive justice for
physician conduct, but, in fairness to him, these considerations are now prominent in discussions of ethics in
medicine in a way they were not when he wrote Medical Ethics.
That these four clusters of moral principles are central to biomedical ethics is a conclusion the authors of this
work have reached by examining considered moral judgments and the coherence of moral beliefs, two notions
analyzed in Chapter 10. The selection of these four principles, rather than some other clusters of principles, does
not receive an argued defense in Chapters 1 through 3. However, in Chapters 4 through 7, we defend the vital
role of each principle in biomedical ethics.
Rules
The framework of moral norms in this book encompasses several types of normative guidance, most notably
principles, rules, rights, and virtues. Principles are more comprehensive and less specific than rules, but we draw
only a loose distinction between them. Both are norms of obligation, but rules are more specific in content and
more restricted in scope. Principles do not function as precise guides in each circumstance in the way that more
detailed rules and judgments do. Principles and rules of obligation have correlative rights and often
corresponding virtues. (See the discussion of rights in Chapter 9 and of virtues in Chapter 2.)
We defend several types of rules, the most important being substantive rules, authority rules, and procedural
rules.
Substantive rules. Rules of truth telling, confidentiality, privacy, forgoing treatment, informed consent, and
rationing health care provide more specific guides to action than do abstract principles. An example of a rule that
sharpens the requirements of the principle of respect for autonomy in certain contexts is “Follow an incompetent
patient’s advance directive whenever it is clear and relevant.” To indicate how this rule specifies the principle of
respect for autonomy, it needs to be stated in full as “Respect the autonomy of incompetent patients by following
all clear and relevant formulations in their advance directives.” This specification shows how the initial norm of
respect for autonomy endures even while becoming specified. (See the subsection “Specifying Principles and
Rules” in the next section of this chapter.)
Authority rules. We also defend rules of decisional authority—that is, rules regarding who may and should
make decisions and perform actions. For example, rules of surrogate authority determine who should serve as
surrogate agents when making decisions for incompetent persons; rules of professional authority determine who
in professional ranks should make decisions to accept or to override a patient’s decisions; and rules of
distributional authority determine who should make decisions about allocating scarce medical resources such as
new and expensive medical technologies.
Authority rules do not delineate substantive standards or criteria for making decisions. However, authority rules
and substantive rules interact in some situations. For instance, authority rules are justified, in part, by how well
particular authorities can be expected to respect and comply with substantive rules and principles.
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Procedural rules. We also defend rules that establish procedures to be followed. Procedures for determining
eligibility for organ transplantation and procedures for reporting grievances to higher authorities are typical
examples. We often resort to procedural rules when we run out of substantive rules and when authority rules are
incomplete or inconclusive. For example, if substantive or authority rules are inadequate to determine which
patients should receive scarce medical resources, a resort to procedural rules such as queuing and lottery may be
justifiable.26
CONFLICTING MORAL NORMS
Prima Facie Obligations and Rights
Principles, rules, obligations, and rights are not rigid or absolute standards that allow no compromise. Although
“a person of principle” is sometimes depicted as strict and unyielding, principles must be balanced and specified
so they can function practically. It is no objection to moral norms that, in some circumstances, they can be
justifiably overridden by other norms with which they conflict. All general moral norms are justifiably
overridden in some circumstances. For example, we might justifiably not tell the truth to prevent someone from
killing another person; and we might justifiably disclose confidential information about a person to protect the
rights of another person.
Actions that harm individuals, cause basic needs to go unmet, or limit liberties are often said to be either wrong
prima facie (i.e., wrongness is upheld unless the act is justifiable because of norms that are more stringent in the
circumstances) or wrong pro tanto (i.e., wrong to a certain extent or wrong unless there is a compelling
justification)—which is to say that the action is wrong in the absence of other moral considerations that supply a
compelling justification.27 Compelling justifications are sometimes available. For example, in circumstances of
a severe swine flu pandemic, the forced confinement of persons through isolation and quarantine orders might be
justified. Here a justifiable infringement of liberty rights occurs.
W. D. Ross’s distinction between prima facie and actual obligations clarifies this idea. A prima facie obligation
must be fulfilled unless it conflicts with an equal or stronger obligation. Likewise, a prima facie right (here we
extend Ross’s theory) must prevail unless it conflicts with an equal or stronger right (or conflicts with some
other morally compelling alternative). Obligations and rights always constrain us unless a competing moral
obligation or right can be shown to be overriding in a particular circumstance. As Ross put it, agents can
determine their actual obligations in situations of conflict by examining the respective weights of the competing
prima facie obligations. What agents ought to do is determined by what they ought to do all things considered.28
Imagine that a psychiatrist has confidential medical information about a patient who also happens to be an
employee in the hospital where the psychiatrist practices. The employee seeks advancement in a stress-filled
position, but the psychiatrist has good reason to believe that this advancement would be devastating for both the
employee and the hospital. The psychiatrist has several prima facie duties in these circumstances, including
those of confidentiality, nonmaleficence, beneficence, and respect for autonomy. Should the psychiatrist break
confidence in this circumstance to meet these other duties? Could the psychiatrist make “confidential”
disclosures to a hospital administrator and not to the personnel office? Addressing such questions through moral
deliberation and justification is required to establish an agent’s actual duty in the face of the conflicting prima
facie duties.
These matters are more complicated than Ross suggests, particularly when rights come into conflict. We may
need to develop a structured moral system or set of guidelines in which (1) some rights in a certain class of
rights (for example, rights of individuals while alive to decide whether to donate their tissues and organs after
death) have a fixed priority over others in another class of rights (for example, rights of family members to make
decisions about the donation of their deceased relatives’ tissues and organs) and (2) morally compelling social
objectives such as gathering information in biomedical research can generally be overridden by basic human
rights such as the right to give an informed consent or refusal.
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No moral theory or professional code of ethics has successfully presented a system of moral rules free of
conflicts and exceptions, but this observation should not generate either skepticism or alarm about ethical
reflection, argument, and theory. The distinction between prima facie and actual obligations conforms closely to
our experience as moral agents and provides indispensable categories for biomedical ethics. Almost daily we
confront situations that force us to choose among conflicting values in our personal lives. For example, a
person’s financial situation might require that he or she choose between buying books for school and buying a
train ticket to see friends. Not having the books will be an inconvenience and a loss, whereas not visiting with
friends will disappoint the friends. Such choices do not come effortlessly, but we are usually able to think
through the alternatives, deliberate, and reach a conclusion.
Moral Regret and Residual Obligation
An agent who determines that a particular act is the best one to perform in a situation of conflicting obligations
may still not be able to discharge all aspects of moral obligation by performing that act. Even the morally best
action in the circumstances may still be regrettable and may leave a moral residue, also called a moral trace.29
Regret and residue over what is not done can arise even if the right action is clear and uncontested.
This point is about continuing obligation, not merely about feelings of regret and residue. Moral residue occurs
because a prima facie obligation does not simply disappear when overridden. Often we have residual obligations
because the obligations we were unable to discharge create new obligations. We may feel deep regret and a sting
of conscience, but we also realize that we have a duty to bring closure to the situation.30 We can sometimes
make up for not fulfilling an obligation in one or more of several ways. For example, we may be able to notify
persons in advance that we will not be able to keep a promise; we may be able to apologize in a way that heals a
relationship; we may be able to change circumstances so that the conflict does not occur again; and we may be
able to provide adequate compensation.
Specifying Principles and Rules
The four clusters of principles we present in this book do not by themselves constitute a general ethical theory.
They provide only a framework of norms with which to get started in biomedical ethics. These principles must
be specified in order to achieve more concrete guidance. Specification is a process of reducing the indeterminacy
of abstract norms and generating rules with action-guiding content.31 For example, without further specification,
“do no harm” is too bare for thinking through problems such as whether it is permissible to hasten the death of a
terminally ill patient.
Specification is not a process of producing or defending general norms such as those in the common morality; it
assumes that the relevant general norms are available. Specifying the norms with which one starts—whether
those in the common morality or norms previously specified—is accomplished by narrowing the scope of the
norms, not by explaining what the general norms mean. We narrow the scope, as Henry Richardson puts it, by
“spelling out where, when, why, how, by what means, to whom, or by whom the action is to be done or
avoided.”32 For example, the norm that we are obligated to “respect the autonomy of persons” cannot, unless
specified, handle complicated problems in clinical medicine and research involving human subjects. A definition
of “respect for autonomy” (e.g., as “allowing competent persons to exercise their liberty rights”) clarifies one’s
meaning in using the norm, but it does not narrow the scope of the general norm or render it more specific in
guiding actions.
Specification adds content. For example, as noted previously, one possible specification of “Respect the
autonomy of patients” is “Respect the autonomy of competent patients by following their advance directives
when they become incompetent.” This specification will work well in some medical contexts, but it will
confront limits in others, where additional specification will be needed. Progressive specification can continue
indefinitely, but to qualify all along the way as a specification some transparent connection must be maintained
to the initial general norm that gives moral authority to the resulting string of specifications. This process is a
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prime way in which general principles become practical instruments for moral reasoning; and it also helps
explain why the four-principles approach is not merely an abstract theory limited to four general principles.33
An example of specification arises when psychiatrists conduct forensic evaluations of patients in a legal context.
Psychiatrists cannot always obtain an informed consent, but they then risk violating their obligations to respect
autonomy, a central imperative of medical ethics. A specification aimed at handling this problem is “Respect the
autonomy of persons who are the subjects of forensic evaluations, where consent is not legally required, by
disclosing to the evaluee the nature and purpose of the evaluation.” We do not claim that this formulation is the
best specification, but it approximates the provision recommended in the “Ethical Guidelines for the Practice of
Forensic Psychiatry” of the American Academy of Psychiatry and the Law.34 This specification attempts to
guide forensic psychiatrists in discharging their diverse moral obligations.
Another example of specification derives from the oft-cited rule “Doctors should put their patients’ interests
first.” In some countries patients are able to receive the best treatment available only if their physicians falsify
information on insurance forms. The rule of patient priority does not imply that a physician should act illegally
by lying or distorting the description of a patient’s problem on an insurance form. Rules against deception, on
the one hand, and for patient priority, on the other, are not categorical imperatives. When they conflict, we need
some form of specification to know what we can and cannot do.
A survey of practicing physicians’ attitudes toward deception illustrates how some physicians reconcile their
dual commitment to patients and to nondeception. Dennis H. Novack and several colleagues used a
questionnaire to obtain physicians’ responses to difficult ethical problems that potentially could be resolved by
use of deception. In one scenario, a physician recommends an annual screening mammography for a fifty-two-
year-old woman who protests that her insurance company will not cover the test. The insurance company will
cover the costs if the physician states (deceptively in this scenario) that the reason is “rule out cancer” rather
than “screening mammography.” The insurance company understands “rule out cancer” to apply only if there is
a breast mass or other objective clinical evidence of the possibility of cancer, neither of which is present in this
case. Almost 70% of the physicians responding to this survey indicated that they would state that they were
seeking to “rule out cancer,” and 85% of this group (85% of the 70%) insisted that their act would not involve
“deception.”35
These physicians’ decisions are rudimentary attempts to specify the rule that “Doctors should put their patients’
interests first.” Some doctors seem to think that it is properly specified as follows: “Doctors should put their
patients’ interests first by withholding information from or misleading someone who has no right to that
information, including an insurance company that, through unjust policies of coverage, forfeits its right to
accurate information.” In addition, most physicians in the study apparently did not operate with the definition of
“deception” favored by the researchers, which is “to deceive is to make another believe what is not true, to
mislead.” Some physicians apparently believed that “deception” occurs when one person unjustifiably misleads
another, and that it was justifiable to mislead the insurance company in these circumstances. It appears that these
physicians would not agree on how to specify rules against deception or rules assigning priority to patients’
interests.
All moral rules are, in principle, subject to specification. All will need additional content, because, as
Richardson puts it, “the complexity of the moral phenomena always outruns our ability to capture them in
general norms.”36 Many already specified rules will need further specification to handle new circumstances of
conflict. These conclusions are connected to our earlier discussion of particular moralities. Different persons and
groups will offer conflicting specifications, potentially creating multiple particular moralities. In any problematic
case, competing specifications are likely to be offered by reasonable and fair-minded parties, all of whom are
committed to the common morality.
To say that a problem or conflict is resolved or dissolved by specification is to say that norms have been made
sufficiently determinate in content that, when cases fall under them, we know what must be done. Obviously
some proposed specifications will fail to provide the most adequate or justified resolution. When competing
specifications emerge, the proposed specifications should be based on deliberative processes of reasoning.
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Specification as a method can be connected to a model of justification that will support some specifications and
not others, as we argue in Chapter 10 (pp. 456–57).
Some specified norms are virtually absolute and need no further specification, though they are rare. Examples
include prohibitions of cruelty that involve unnecessary infliction of pain and suffering.37 “Do not rape” is a
comparable example. More interesting are norms that are intentionally formulated with the goal of including all
legitimate exceptions. An example is “Always obtain oral or written informed consent for medical interventions
with competent patients, except in emergencies, in forensic examinations, in low-risk situations, or when patients
have waived their right to adequate information.” This norm needs further interpretation, including an analysis
of what constitutes an informed consent, an emergency, a waiver, a forensic examination, and a low risk. This
rule would be absolute if all legitimate exceptions had been successfully incorporated into its formulation, but
such rules are rare. In light of the range of possibilities for contingent conflicts among rules, even the firmest and
most detailed rules are likely to encounter exceptive cases.
Weighing and Balancing
Principles, rules, obligations, and rights often must be balanced in circumstances of contingent conflict. Does
balancing differ from specification, or are they identical?
The process of weighing and balancing. Balancing occurs in the process of reasoning about which moral norms
should prevail when two or more of them come into conflict. Balancing is concerned with the relative weights
and strengths of different moral norms, whereas specification is concerned primarily with their range and scope,
that is, their reach when narrowing the scope of pre-existing general norms (while adding content). Balancing
consists of deliberation and judgment about these weights and strengths. It is well suited for reaching judgments
in particular cases, whereas specification is especially useful for developing more specific policies from already
accepted general norms.
The metaphor of larger and smaller weights moving a scale up and down has often been invoked to depict the
balancing process, but this metaphor can obscure what happens in balancing. Justified acts of balancing are
supported by good reasons. They need not rest merely on intuition or feeling, although intuitive balancing is one
form of balancing. Suppose a physician encounters an emergency case that would require her to extend an
already long day, making her unable to keep a promise to take her son to the local library. She engages in a
process of deliberation that leads her to consider how urgently her son needs to get to the library, whether they
could go to the library later, whether another physician could handle the emergency case, and the like. If she
determines to stay deep into the night with the patient, she has judged this obligation to be overriding because
she has found a good and sufficient reason for her action. The reason might be that a life hangs in the balance
and she alone may have the knowledge to deal adequately with the circumstances. Canceling her evening with
her son, distressing as it will be, could be justified by the significance of her reasons for doing what she does.
One way of approaching balancing merges it with specification. In our example, the physician’s reasons can be
generalized to similar cases: “If a patient’s life hangs in the balance and the attending physician alone has the
knowledge to deal adequately with the full array of the circumstances, then the physician’s conflicting domestic
obligations must yield.” Even if we do not always state the way we balance considerations in the form of a
specification, might not all deliberative judgments be made to conform to this model? If so, then deliberative
balancing would be nothing but deliberative specification.
The goal of merging specification and balancing is appealing, but it is not well-suited to handle all situations in
which balancing occurs. Specification requires that a moral agent extend norms by both narrowing their scope
and generalizing to relevantly similar circumstances. Accordingly, “Respect the autonomy of competent patients
when they become incompetent by following their advance directives” is a rule suited for all incompetent
patients with advance directives. However, the responses of caring moral agents, such as physicians and nurses,
are often highly specific to the needs of this patient or this family in this particular circumstance. Numerous
considerations must be weighed and balanced, and any generalizations that could be formed might not hold even
in remarkably similar cases.
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Generalizations conceived as policies might even be dangerous. For example, cases in which risk of harm and
burden are involved for a patient are often circumstances unlikely to be decided by expressing, by a rule, how
much risk is allowable or how heavy the burden can be to secure a certain stated benefit. After levels of risk and
burden are determined, these considerations must be balanced with the likelihood of the success of a procedure,
the uncertainties involved, whether an adequately informed consent can be obtained, whether the family has a
role to play, and the like. In this way, balancing allows for a due consideration of all the factors bearing on a
complex particular circumstance, including all relevant moral norms.
Consider the following discussion with a young woman who has just been told that she is HIV-infected, as
recorded by physician Timothy Quill and nurse Penelope Townsend:38
PATIENT: Please don’t tell me that. Oh my God. Oh my children. Oh Lord have mercy. Oh God,
why did He do this to me? …
DR. QUILL: First thing we have to do is learn as much as we can about it, because right now you
are okay.
PATIENT: I don’t even have a future. Everything I know is that you gonna die anytime. What is
there to do? What if I’m a walking time bomb? People will be scared to even touch me or say
anything to me.
DR. QUILL: No, that’s not so.
PATIENT: Yes they will, ’cause I feel that way …
DR. QUILL: There is a future for you …
PATIENT: Okay, all right. I’m so scared. I don’t want to die. I don’t want to die, Dr. Quill, not yet. I
know I got to die, but I don’t want to die.
DR. QUILL: We’ve got to think about a couple of things.
Quill and Townsend work to calm down and reassure this patient, while engaging sympathetically with her
feelings and conveying the presence of knowledgeable medical authorities. Their emotional investment in the
patient’s feelings is joined with a detached evaluation of the patient. Too much compassion and emotional
investment may doom the task at hand; too much detachment will be cold and may destroy the patient’s trust and
hope. A balance in the sense of a right mixture between engagement and detachment must be found.
Quill and Townsend could try to specify norms of respect and beneficence to indicate how caring physicians and
nurses should respond to patients who are desperately upset. However, specification will ring hollow and will
not be sufficiently nuanced to provide practical guidance for this patient and certainly not for all desperately
upset patients. Each encounter calls for a response inadequately captured by general principles and rules and
their specifications. Behavior that is a caring response for one desperate patient may intrude on privacy or
irritate another desperate patient. A physician may, for example, find it appropriate to touch or caress a patient,
while appreciating that such behavior would be entirely inappropriate for another patient in a similar
circumstance.
How physicians and nurses balance different moral considerations often involves sympathetic insight, humane
responsiveness, and the practical wisdom of discerning a particular patient’s circumstance and needs.39
Balancing is often a more complex set of activities than those involved in a straightforward case of balancing
two conflicting principles or rules. Considerations of trust, compassion, objective assessment, caring
responsiveness, reassurance, and the like may all be involved in the process of balancing.
In many clinical contexts it may be hopelessly complicated and unproductive to engage in specification. For
example, in cases of balancing harms of treatment against the benefits of treatment for incompetent patients, the
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cases are often so exceptional that it is perilous to generalize a conclusion that would reach out to other cases.
These problems are sometimes further complicated by disagreements among family members about what
constitutes a benefit, poor decisions and indecision by a marginally competent patient, limitations of time and
resources, and the like.40
We do not suggest that balancing is inescapably intuitive and unreflective. Instead, we propose a model of moral
judgment that focuses on how balancing and judgment occur through practical astuteness, discriminating
intelligence, and sympathetic responsiveness that are not reducible to the specification of norms. The capacity to
balance many moral considerations is connected to what we discuss in Chapter 2 as capacities of moral
character. Capacities in the form of virtues of compassion, attentiveness, discernment, caring, and kindness are
integral to the way wise moral agents balance diverse, sometimes competing, moral considerations.
Practicability supplies another reason to support the conclusion that the model of specification needs
supplementation by the model of balancing. Progressive specification covering all areas of the moral life would
eventually mushroom into a body of norms so bulky that the normative system would become unwieldy. A
scheme of comprehensive specification would constitute a package of potentially hundreds, thousands, or
millions of rules, each suited to a narrow range of conduct. In the model of specification, every type of action in
a circumstance of the contingent conflict of norms would be covered by a rule, but the formulation of rules for
every circumstance of contingent conflict would be a body of rules too cumbersome to be helpful.
Conditions that constrain balancing. To allay concerns that the model of balancing is too intuitive or too open-
ended and lacks a commitment to firm principles and rigorous reasoning, we propose six conditions that should
help reduce intuition, partiality, and arbitrariness. These conditions must be met to justify infringing one prima
facie norm in order to adhere to another.
1. 1. Good reasons are offered to act on the overriding norm rather than the infringed norm.
2. 2. The moral objective justifying the infringement has a realistic prospect of achievement.
3. 3. No morally preferable alternative actions are available.41
4. 4. The lowest level of infringement, commensurate with achieving the primary goal of the action, has been
selected.
5. 5. All negative effects of the infringement have been minimized.
6. 6. All affected parties have been treated impartially.
Although some of these conditions are obvious and noncontroversial, some are often overlooked in moral
deliberation and would lead to different conclusions were they observed. For example, some decisions to use
futile life-extending technologies over the objections of patients or their surrogates violate condition 2 by
endorsing actions in which no realistic prospect exists of achieving the goals of a proposed intervention.
Typically, these decisions are made when health professionals regard the intervention as legally required, but in
some cases the standard invoked is merely traditional or deeply entrenched.
Condition 3 is more commonly violated. Actions are regularly performed in some settings without serious
consideration of alternative actions that might be performed. As a result, agents fail to identify a morally
preferable alternative. For example, in animal care and use committees a common conflict involves the
obligation to approve a good scientific protocol and the obligation to protect animals against unnecessary
suffering. A protocol may be approved if it proposes a standard form of anesthesia. However, standard forms of
anesthesia are not always the best way to protect the animal, and further inquiry is needed to determine the best
anesthetic for the particular interventions proposed. In our schema of conditions, it is unjustifiable to approve the
protocol or to conduct the experiment without this additional inquiry, which affects conditions 4 and 5 as well as
3.
Finally, consider this example: The principle of respect for autonomy and the principle of beneficence (which
requires acts intended to prevent harm to others) sometimes come into contingent conflict when addressing
situations that arise in governmental and professional responses to serious infectious-disease outbreaks, such as
severe acquired respiratory syndrome (SARS). Persons exposed to SARS may put other persons at risk. The
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government, under its public health responsibilities, and various health professionals have an obligation based
on beneficence and justice to protect unexposed persons whenever possible. However, respect for autonomy
often sets a prima facie barrier to infringements of liberty and privacy even in the context of public health
concerns. To justify overriding respect for autonomy, one must show that mandatory quarantine of exposed
individuals is necessary to prevent harm to others and has a reasonable prospect of preventing such harm. If it
meets these conditions, mandatory quarantine still must pass the least-infringement test (condition 4), and public
health officials should seek to minimize the negative effects of the quarantine, including the loss of income and
the inability to care for dependent family members (condition 5). Finally, impartial application of the quarantine
rules is essential for both fairness and public trust (condition 6).42
In our judgment, these six constraining conditions are morally demanding, at least in some circumstances. When
conjoined with requirements of coherence presented in Chapter 10 (pp. 439–44), these conditions provide
protections against purely intuitive, subjective, or biased balancing judgments. We could introduce further
criteria or safeguards, such as “rights override nonrights” and “liberty principles override nonliberty principles,”
but these provisions are certain to fail in circumstances in which rights claims and liberty interests are relatively
minor.
Moral Diversity and Moral Disagreement
Sometimes conscientious and reasonable moral agents understandably disagree over moral priorities in
circumstances of a contingent conflict of norms. Morally conscientious persons may disagree, for example,
about whether disclosure of a life-threatening condition to a fragile patient is appropriate, whether religious
values about brain death have a place in secular biomedical ethics, whether mature teenagers should be
permitted to refuse life-sustaining treatments, and other issues. Disagreement does not indicate moral ignorance
or moral defect. We simply lack a single, entirely reliable way to resolve many disagreements, despite methods
of specifying and balancing.
Moral disagreement can emerge because of (1) factual disagreements (e.g., about the level of suffering that an
intervention will cause), (2) disagreements resulting from insufficient information or evidence, (3)
disagreements about which norms are applicable or relevant in the circumstances, (4) disagreements about the
relative weights or rankings of the relevant norms, (5) disagreements about appropriate forms of specification or
balancing, (6) the presence of a genuine moral dilemma, (7) scope and moral status disagreements about who
should be protected by a moral norm (e.g., whether embryos, fetuses, and sentient animals are protected; see
Chapter 3), and (8) conceptual disagreements about a crucial moral concept such as whether removal of nutrition
and hydration from a dying patient at a family’s request constitutes killing.
Different parties may emphasize different principles or assign different weights to principles even when they
agree on which principles and concepts are relevant. Disagreement may persist among morally committed
persons who appropriately appreciate the basic demands that morality makes on them. If evidence is incomplete
and different items of evidence are available to different parties, one individual or group may be justified in
reaching a conclusion that another individual or group is justified in rejecting. Even if both parties have some
incorrect beliefs, each party may have good reasons for holding those beliefs. We cannot hold persons to a
higher practical standard than to make judgments conscientiously in light of the available norms and evidence.
When moral disagreements arise, a moral agent can—and usually should—defend his or her decision without
disparaging or reproaching others who reach different decisions. Recognition of legitimate diversity—by
contrast to moral violations that warrant criticism—is vital in the evaluation of the actions of others. One
person’s conscientious assessment of his or her obligations may differ from another’s when they confront the
same moral problem, and both evaluations may be appropriately grounded in the common morality. Similarly,
what one institution or government determines it should do may differ from what another institution or
government determines it should do. In such cases we can assess one position as morally preferable to another
only if we can show that the position rests on a more coherent set of specifications and interpretations of the
common morality.43
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CONCLUSION
In this chapter we have presented what is sometimes called the four-principles approach to biomedical ethics,
now commonly called principlism.44 The four clusters of principles in our moral framework descend from the
common morality, but when specifying and balancing these principles in later chapters we will also call on
historical experience in formulating professional obligations and virtues in health care, public health, biomedical
research, and health policy. Although various assumptions in traditional medical ethics, current medical and
research codes, and other parts of contemporary bioethics need further reform, we are deeply indebted to their
insights and commitments. Our goal in later chapters is to develop, specify, and balance the normative content of
the four clusters of principles, and we will often seek to render our views consistent with professional traditions,
practices, and codes.
Principlism is not merely a list of four abstract principles. It is a theory about how these principles are linked to
and guide practice. In the nine chapters hereafter we show how principles and other moral norms are connected
to an array of understandings, practices, and transactions in health care settings, research institutions, and public
health policies.
NOTES
1. 1. See Albert Jonsen, The Birth of Bioethics (New York: Oxford University Press, 1998), pp. 3ff; Jonsen,
A Short History of Medical Ethics (New York: Oxford University Press, 2000); John-Stewart Gordon,
“Bioethics,” in the Internet Encyclopedia of Philosophy, especially section 2, available at
https://www.iep.utm.edu/bioethics/ (accessed March 23, 2018); and Edmund D. Pellegrino and David C.
Thomasma, The Virtues in Medical Practice (New York: Oxford University Press, 1993), pp. 184–89.
2. 2. A comprehensive treatment of this history that ranges worldwide is Robert B. Baker and Laurence
McCullough, eds., The Cambridge World History of Medical Ethics (Cambridge: Cambridge University
Press, 2009).
3. 3. The language of “applied ethics” can be misleading insofar as it suggests one-way traffic from ethical
theory and principles and rules to particular judgments about cases. In fact, particular case judgments
interact dialectically with and may lead to modifications of theories, principles, and rules. See our
discussion in Chapter 10, pp. 404–10.
4. 4. These distinctions should be used with caution. Metaethics frequently takes a turn toward the
normative, and normative ethics often relies on metaethics. Just as no sharp distinction should be drawn
between practical ethics and general normative ethics, no bright line should be drawn to distinguish
normative ethics and metaethics.
5. 5. Although there is only one universal common morality, there is more than one theory of the common
morality. For a diverse group of theories, see Alan Donagan, The Theory of Morality (Chicago: University
of Chicago Press, 1977); Bernard Gert, Common Morality: Deciding What to Do (New York: Oxford
University Press, 2007); Bernard Gert, Charles M. Culver, and K. Danner Clouser, Bioethics: A Return to
Fundamentals, 2nd ed. (New York: Oxford University Press, 2006); W. D. Ross, The Foundations of
Ethics (Oxford: Oxford University Press, 1939); and the special issue of the Kennedy Institute of Ethics
Journal 13 (2003), especially the introductory article by Robert Veatch, pp. 189–92.
For challenges to these theories and their place in bioethics, see John D. Arras, “The Hedgehog and the
Borg: Common Morality in Bioethics,” Theoretical Medicine and Bioethics 30 (2009): 11–30; Arras, “A
Common Morality for Hedgehogs: Bernard Gert’s Method,” in Arras, Methods in Bioethics: The Way We
Reason Now, ed. James F. Childress and Matthew Adams (New York: Oxford University Press, 2017), pp.
27–44; B. Bautz, “What Is the Common Morality, Really?” Kennedy Institute of Ethics Journal 26 (2016):
29–45; Carson Strong, “Is There No Common Morality?” Medical Humanities Review 11 (1997): 39–45;
and Andrew Alexandra and Seumas Miller, “Ethical Theory, ‘Common Morality,’ and Professional
Obligations,” Theoretical Medicine and Bioethics 30 (2009): 69–80.
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6. 6. See Martha Nussbaum’s thesis that in Aristotle’s philosophy, certain “non-relative virtues” are objective
and universal. “Non-Relative Virtues: An Aristotelian Approach,” in Ethical Theory, Character, and
Virtue, ed. Peter French et al. (Notre Dame, IN: University of Notre Dame Press, 1988), pp. 32–53,
especially pp. 33–4, 46–50. In a classic work in philosophical ethics, David Hume presents a theory of the
virtues as objective and universal, though his theory is somewhat different from Aristotle’s. See Hume’s
An Enquiry concerning the Principles of Morals, ed. Tom L. Beauchamp, in the series “Oxford
Philosophical Texts Editions” (Oxford: Oxford University Press, 1998).
7. 7. For a broad and engaging account of common morality, see Rebecca Kukla, “Living with Pirates:
Common Morality and Embodied Practice,” Cambridge Quarterly of Healthcare Ethics 23 (2014): 75–85.
See also Bernard Gert’s insistence on the role of the whole moral system (not merely rules of obligation)
and the perils of neglecting it, an often overlooked point with which we agree. See Gert’s Morality: Its
Nature and Justification (New York: Oxford University Press, 2005), pp. 3, 159–61, 246–47; and see also
his “The Definition of Morality,” in The Stanford Encyclopedia of Philosophy; revision of February 8,
2016, available at https://plato.stanford.edu/entries/morality-definition/ (accessed February 9, 2018).
8. 8. This mistaken interpretation of our theory is found in Leigh Turner, “Zones of Consensus and Zones of
Conflict: Questioning the ‘Common Morality’ Presumption in Bioethics,” Kennedy Institute of Ethics
Journal 13 (2003): 193–218; and Turner, “An Anthropological Exploration of Contemporary Bioethics:
The Varieties of Common Sense,” Journal of Medical Ethics 24 (1998): 127–33.
9. 9. See David DeGrazia, “Common Morality, Coherence, and the Principles of Biomedical Ethics,”
Kennedy Institute of Ethics Journal 13 (2003): 219–30; Turner, “Zones of Consensus and Zones of
Conflict”; Donald C. Ainslee, “Bioethics and the Problem of Pluralism,” Social Philosophy and Policy 19
(2002): 1–28; Oliver Rauprich, “Common Morality: Comment on Beauchamp and Childress,” Theoretical
Medicine and Bioethics 29 (2008): 43–71; and Letícia Erig Osório de Azambuja and Volnei Garrafa, “The
Common Morality Theory in the Work of Beauchamp and Childress,” Revista Bioética 23 (2015),
available at http://www.scielo.br/scielo.php?pid=S1983-80422015000300634&script=sci_arttext&tlng=en
(accessed March 22, 2018). For a related, but distinguishable, criticism, see Anna E. Westra, Dick L.
Willems, and Bert J. Smit, “Communicating with Muslim Parents: ‘The Four Principles’ Are not as
Culturally Neutral as Suggested,” European Journal of Pediatrics 168 (2009): 1383–87; this article is
published together with a beautifully correct interpretation of our position by Voo Teck Chuan, “Editorial
Comment: The Four Principles and Cultural Specification,” European Journal of Pediatrics 168 (2009):
1389.
10. 10. Kukla reaches this conclusion in “Living with Pirates.” See, in response, Tom L. Beauchamp, “On
Common Morality as Embodied Practice: A Reply to Kukla,” Cambridge Quarterly of Healthcare Ethics
23 (2014): 86–93; Carson Strong, “Kukla’s Argument against Common Morality as a Set of Precepts: On
Stranger Tides,” Cambridge Quarterly of Healthcare Ethics 23 (2014): 93–99; and Kukla, “Response to
Strong and Beauchamp—at World’s End,” Cambridge Quarterly of Healthcare Ethics 23 (2014): 99–102.
11. 11. See Richard B. Brandt, “Morality and Its Critics,” in his Morality, Utilitarianism, and Rights
(Cambridge: Cambridge University Press, 1992), chap. 5; and Gregory Mellema, “Moral Ideals and Virtue
Ethics,” Journal of Ethics 14 (2010): 173–80. See also our discussion of moral ideals and supererogation
in Chapter 2, pp. 45–49.
12. 12. Talcott Parsons, Essays in Sociological Theory, rev. ed. (Glencoe, IL: Free Press, 1954), p. 372. See
further Jan Nolin, In Search of a New Theory of Professions (Borås, Sweden: University of Borås, 2008).
13. 13. See the excellent introduction to this subject in Edmund D. Pellegrino, “Codes, Virtues, and
Professionalism,” in Methods of Bioethics, ed. Daniel Sulmasy and Jeremy Sugarman, 2nd ed.
(Washington, DC: Georgetown University Press, 2010), pp. 91–108. For an overview of codes of medical
ethics, see Robert Baker, “Medical Codes and Oaths,” Bioethics [Formerly Encyclopedia of Bioethics], 4th
ed., ed. Bruce Jennings (Farmington Hills, MI: Gale, Cengage Learning, Macmillan Reference USA,
2014), vol. 4, pp. 1935–46. For a history and assessment of the Code of Ethics for Nurses of the American
Nurses Association, see Beth Epstein and Martha Turner, “The Nursing Code of Ethics: Its Value, Its
History,” Online Journal of Issues in Nursing 20, no. 2 (May 2015), available at
http://ojin.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofConte
nts/Vol-20-2015/No2-May-2015/The-Nursing-Code-of-Ethics-Its-Value-Its-History.html (accessed June 3,
2018).
https://plato.stanford.edu/entries/morality-definition/
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14. 14. The American Medical Association Code of Ethics of 1847 was largely adapted from Thomas
Percival’s Medical Ethics; or a Code of Institutes and Precepts, Adapted to the Professional Conduct of
Physicians and Surgeons (Manchester, UK: S. Russell, 1803). See Donald E. Konold, A History of
American Medical Ethics 1847–1912 (Madison, WI: State Historical Society of Wisconsin, 1962), chaps.
1–3; Chester Burns, “Reciprocity in the Development of Anglo-American Medical Ethics,” in Legacies in
Medical Ethics, ed. Burns (New York: Science History Publications, 1977); and American Medical
Association, “History of the Code,” available at https://www.ama-assn.org/sites/default/files/media-
browser/public/ethics/ama-code-ethics-history (accessed March 23, 2018).
15. 15. For a related and rigorous critical analysis of Hippocratic and other medical codes, see Robert M.
Veatch’s influential views in his Hippocratic, Religious, and Secular Medical Ethics: The Points of
Conflict (Washington, DC: Georgetown University Press, 2012).
16. 16. Cf. the conclusions reached about medicine in N. D. Berkman, M. K. Wynia, and L. R. Churchill,
“Gaps, Conflicts, and Consensus in the Ethics Statements of Professional Associations, Medical Groups,
and Health Plans,” Journal of Medical Ethics 30 (2004): 395–401; Ryan M. Antiel, Farr A. Curlin, C.
Christopher Hook, and Jon C. Tilburt, “The Impact of Medical School Oaths and Other Professional
Codes of Ethics: Results of a National Physician Survey,” Archives of Internal Medicine 171 (2011): 469–
71; Robert D. Orr, Norman Pang, Edmund D. Pellegrino, and Mark Siegler, “Use of the Hippocratic Oath:
A Review of Twentieth Century Practice and a Content Analysis of Oaths Administered in Medical
Schools in the U.S. and Canada in 1993,” Journal of Clinical Ethics 8 (1997): 377–88; and A. C. Kao and
K. P. Parsi, “Content Analyses of Oaths Administered at U.S. Medical Schools in 2000,” Academic
Medicine 79 (2004): 882–87.
17. 17. Jay Katz, ed., Experimentation with Human Beings (New York: Russell Sage Foundation, 1972), pp.
ix–x.
18. 18. For an examination of different models of public bioethics, see James F. Childress, “Reflections on the
National Bioethics Advisory Commission and Models of Public Bioethics,” Goals and Practice of Public
Bioethics: Reflections on National Bioethics Commissions, special report, Hastings Center Report 47, no.
3 (2017): S20–S23, and several other essays in this special report. See also Society’s Choices: Social and
Ethical Decision Making in Biomedicine, ed. Ruth Ellen Bulger, Elizabeth Meyer Bobby, and Harvey V.
Fineberg, for the Committee on the Social and Ethical Impacts of Developments in Biomedicine, Division
of Health Sciences Policy, Institute of Medicine (Washington, DC: National Academies Press, 1995).
19. 19. See Allen Buchanan, “Philosophy and Public Policy: A Role for Social Moral Epistemology,” Journal
of Applied Philosophy 26 (2009): 276–90; Will Kymlicka, “Moral Philosophy and Public Policy: The
Case of New Reproductive Technologies,” in Philosophical Perspectives on Bioethics, ed. L. W. Sumner
and Joseph Boyle (Toronto: University of Toronto Press, 1996); Dennis Thompson, “Philosophy and
Policy,” Philosophy & Public Affairs 14 (Spring 1985): 205–18; Andrew I. Cohen, Philosophy, Ethics,
and Public Policy (London: Routledge, 2015); and a symposium on “The Role of Philosophers in the
Public Policy Process: A View from the President’s Commission,” with essays by Alan Weisbard and Dan
Brock, Ethics 97 (July 1987): 775–95.
20. 20. Tarasoff v. Regents of the University of California, 17 Cal. 3d 425, 551 P.2d 334, 131 Cal. Rptr. 14
(Cal. 1976).
21. 21. On the interactions of ethical and legal judgments (and the reasons for their interactions) on bioethical
issues, see Stephen W. Smith, John Coggan, Clark Hobson, et al., eds., Ethical Judgments: Re-Writing
Medical Law (Oxford: Hart, 2016).
22. 22. See John Lemmon, “Moral Dilemmas,” Philosophical Review 71 (1962): 139–58; Daniel Statman,
“Hard Cases and Moral Dilemmas,” Law and Philosophy 15 (1996): 117–48; Terrance McConnell, “Moral
Dilemmas,” Stanford Encyclopedia of Philosophy (Fall 2014 edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/fall2014/entries/moral-dilemmas/ (accessed March 23, 2018); H. E.
Mason, “Responsibilities and Principles: Reflections on the Sources of Moral Dilemmas,” in Moral
Dilemmas and Moral Theory, ed. H. E. Mason (New York: Oxford University Press, 1996).
23. 23. Christopher W. Gowans, ed., Moral Dilemmas (New York: Oxford University Press, 1987); Walter
Sinnott-Armstrong, Moral Dilemmas (Oxford: Basil Blackwell, 1988); Edmund N. Santurri, Perplexity in
the Moral Life: Philosophical and Theological Considerations (Charlottesville: University Press of
Virginia, 1987). For an approach to dilemmas offered as an addition to our account in this chapter, see
https://www.ama-assn.org/sites/default/files/media-browser/public/ethics/ama-code-ethics-history
https://plato.stanford.edu/archives/fall2014/entries/moral-dilemmas/
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Joseph P. DeMarco, “Principlism and Moral Dilemmas: A New Principle,” Journal of Medical Ethics 31
(2005): 101–5.
24. 24. Some writers in biomedical ethics express reservations about the place of the particular principles we
propose in this book. See Pierre Mallia, The Nature of the Doctor–Patient Relationship: Health Care
Principles through the Phenomenology of Relationships with Patients (Springer Netherlands: Springer
Briefs in Ethics, 2013), esp. chap. 2, “Critical Overview of Principlist Theories”; K. Danner Clouser and
Bernard Gert, “A Critique of Principlism,” Journal of Medicine and Philosophy 15 (April 1990): 219–36;
Søren Holm, “Not Just Autonomy—The Principles of American Biomedical Ethics,” Journal of Medical
Ethics 21 (1994): 332–38; Peter Herissone-Kelly, “The Principlist Approach to Bioethics, and Its Stormy
Journey Overseas,” in Scratching the Surface of Bioethics, ed. Matti Häyry and Tuija Takala (Amsterdam:
Rodopi, 2003), pp. 65–77; and numerous essays in Principles of Health Care Ethics, ed. Raanan Gillon
and Ann Lloyd (London: Wiley, 1994); and Principles of Health Care Ethics, 2nd ed., ed. Richard E.
Ashcroft et al. (Chichester, UK: Wiley, 2007).
25. 25. Thomas Percival, Medical Ethics; or a Code of Institutes and Precepts, Adapted to the Professional
Interests of Physicians and Surgeons (Manchester: S. Russell, 1803 [and numerous later editions]). For
commentary on this classic work and its influence, see Edmund D. Pellegrino, “Percival’s Medical Ethics:
The Moral Philosophy of an 18th-Century English Gentleman,” Archives of Internal Medicine 146 (1986):
2265–69; Pellegrino, “Thomas Percival’s Ethics: The Ethics Beneath the Etiquette” (Washington DC:
Georgetown University, Kennedy Institute of Ethics, 1984), available at
https://repository.library.georgetown.edu/bitstream/handle/10822/712018/Pellegrino_M269 ?
sequence=1&isAllowed=n (accessed March 24, 2018); Robert B. Baker, Arthur L. Caplan, Linda L.
Emanuel, and Stephen R. Latham, eds., The American Medical Ethics Revolution: How the AMA’s Code of
Ethics Has Transformed Physicians’ Relationships to Patients, Professionals, and Society (Baltimore:
Johns Hopkins University Press, 1999).
26. 26. Procedural rules might also be interpreted as grounded in substantive rules of equality. If so
interpreted, the procedural rules could be said to have a justification in substantive rules.
27. 27. For a discussion of the distinction between pro tanto and prima facie, see Shelly Kagan, The Limits of
Morality (Oxford: Clarendon Press, 1989), p. 17. Kagan prefers pro tanto, rather than prima facie, and
notes that Ross used prima facie with effectively the same meaning, which some writers classify as a
mistake on Ross’s part. See further Andrew E. Reisner, “Prima Facie and Pro Tanto Oughts,” International
Encyclopedia of Ethics [online], first published February 1, 2013, available at
https://onlinelibrary.wiley.com/doi/full/10.1002/9781444367072.wbiee406 (accessed March 24, 2018).
28. 28. W. D. Ross, The Right and the Good (Oxford: Clarendon Press, 1930), esp. pp. 19–36, 88. On
important cautions about both the meaning and use of the related notion of “prima facie rights,” see Joel
Feinberg, Rights, Justice, and the Bounds of Liberty (Princeton, NJ: Princeton University Press, 1980), pp.
226–29, 232; and Judith Jarvis Thomson, The Realm of Rights (Cambridge, MA: Harvard University
Press, 1990), pp. 118–29.
29. 29. Robert Nozick, “Moral Complications and Moral Structures,” Natural Law Forum 13 (1968): 1–50,
available at https://scholarship.law.nd.edu/cgi/viewcontent.cgi?article=1136…naturallaw_forum (accessed
March 26, 2018); James J. Brummer, “Ross and the Ambiguity of Prima Facie Duty,” History of
Philosophy Quarterly 19 (2002): 401–22. See also Thomas E. Hill, Jr., “Moral Dilemmas, Gaps, and
Residues: A Kantian Perspective”; Walter Sinnott-Armstrong, “Moral Dilemmas and Rights”; and
Terrance C. McConnell, “Moral Residue and Dilemmas”—all in Moral Dilemmas and Moral Theory, ed.
Mason.
30. 30. For a similar view, see Ross, The Right and the Good, p. 28.
31. 31. Henry S. Richardson, “Specifying Norms as a Way to Resolve Concrete Ethical Problems,”
Philosophy & Public Affairs 19 (Fall 1990): 279–310; and Richardson, “Specifying, Balancing, and
Interpreting Bioethical Principles,” Journal of Medicine and Philosophy 25 (2000): 285–307, also in
Belmont Revisited: Ethical Principles for Research with Human Subjects, ed. James F. Childress, Eric M.
Meslin, and Harold T. Shapiro (Washington, DC: Georgetown University Press, 2005), pp. 205–27. See
also David DeGrazia, “Moving Forward in Bioethical Theory: Theories, Cases, and Specified
Principlism,” Journal of Medicine and Philosophy 17 (1992): 511–39.
32. 32. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” p. 289.
https://repository.library.georgetown.edu/bitstream/handle/10822/712018/Pellegrino_M269 ?sequence=1&isAllowed=n
https://onlinelibrary.wiley.com/doi/full/10.1002/9781444367072.wbiee406
https://scholarship.law.nd.edu/cgi/viewcontent.cgi?article=1136…naturallaw_forum
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33. 33. For an excellent critical examination and case study of how the four-principles framework and
approach can and should be used as a practical instrument, see John-Stewart Gordon, Oliver Rauprich, and
Jochen Vollmann, “Applying the Four-Principle Approach,” Bioethics 25 (2011): 293–300, with a reply by
Tom Beauchamp, “Making Principlism Practical: A Commentary on Gordon, Rauprich, and Vollmann,”
Bioethics 25 (2011): 301–3.
34. 34. American Academy of Psychiatry and the Law, “Ethical Guidelines for the Practice of Forensic
Psychiatry,” as revised and adopted May 2005, section III: “The informed consent of the person
undergoing the forensic evaluation should be obtained when necessary and feasible. If the evaluee is not
competent to give consent, the evaluator should follow the appropriate laws of the jurisdiction. …
[P]sychiatrists should inform the evaluee that if the evaluee refuses to participate in the evaluation, this
fact may be included in any report or testimony. If the evaluee does not appear capable of understanding
the information provided regarding the evaluation, this impression should also be included in any report
and, when feasible, in testimony.” Available at http://www.aapl.org/ethics.htm (accessed February 19,
2018).
35. 35. Dennis H. Novack et al., “Physicians’ Attitudes toward Using Deception to Resolve Difficult Ethical
Problems,” Journal of the American Medical Association 261 (May 26, 1989): 2980–85. We return to
these problems in Chapter 8 (pp. 327–37).
36. 36. Richardson, “Specifying Norms,” p. 294. The word “always” in this formulation should be understood
to mean “in principle always.” Specification may, in some cases, reach a final form.
37. 37. Other prohibitions, such as rules against murder and rape, may be absolute only because of the
meaning of their terms. For example, to say “murder is categorically wrong” may be only to say
“unjustified killing is unjustified.”
38. 38. Timothy Quill and Penelope Townsend, “Bad News: Delivery, Dialogue, and Dilemmas,” Archives of
Internal Medicine 151 (March 1991): 463–68.
39. 39. See Alisa Carse, “Impartial Principle and Moral Context: Securing a Place for the Particular in Ethical
Theory,” Journal of Medicine and Philosophy 23 (1998): 153–69. For a defense of balancing as the best
method in such situations, see Joseph P. DeMarco and Paul J. Ford, “Balancing in Ethical Deliberations:
Superior to Specification and Casuistry,” Journal of Medicine and Philosophy 31 (2006): 483–97, esp.
491–93.
40. 40. See similar reflections in Lawrence Blum, Moral Perception and Particularity (New York:
Cambridge, 1994), p. 204.
41. 41. To the extent these six conditions incorporate moral norms, the norms are prima facie, not absolute.
Condition 3 is redundant if it cannot be violated when all of the other conditions are satisfied; but it is best
to be clear on this point, even if redundant.
42. 42. See James F. Childress and Ruth Gaare Bernheim, “Public Health Ethics: Public Justification and
Public Trust,” Bundesgundheitsblat: Gusundheitsforschung, Gesundheitsschutz 51, no. 2 (February 2008):
158–63; and Ruth Gaare Bernheim, James F. Childress, Richard J. Bonnie, and Alan L. Melnick,
Essentials of Public Health Ethics: Foundations, Tools, and Interventions (Boston: Jones and Bartlett,
2014), esp. chaps. 1, 2, and 8.
43. 43. For a criticism of our conclusion in this paragraph, see Marvin J. H. Lee, “The Problem of ‘Thick in
Status, Thin in Content,’ in Beauchamp and Childress’s Principlism,” Journal of Medical Ethics 36
(2010): 525–28. See further Angus Dawson and E. Garrard, “In Defence of Moral Imperialism: Four
Equal and Universal Prima Facie Principles,” Journal of Medical Ethics 32 (2006): 200–204; Walter
Sinnott-Armstrong, Moral Dilemmas, pp. 216–27; and D. D. Raphael, Moral Philosophy (Oxford: Oxford
University Press, 1981), pp. 64–65.
44. 44. See Bernard Gert, Charles M. Culver, and K. Danner Clouser, Bioethics: A Return to Fundamentals,
2nd ed., chap. 4; Clouser and Gert, “A Critique of Principlism,” pp. 219–36; Carson Strong, “Specified
Principlism,” Journal of Medicine and Philosophy 25 (2000): 285–307; John H. Evans, “A Sociological
Account of the Growth of Principlism,” Hastings Center Report 30 (September–October 2000): 31–38;
Evans, Playing God: Human Genetic Engineering and the Rationalization of Public Bioethical Debate
(Chicago: University of Chicago Press, 2002); and Evans, The History and Future of Bioethics: A
Sociological View (New York: Oxford University Press, 2011). For a critical analysis of Evans’s
arguments, particularly in Playing God, see James F. Childress, “Comments,” Journal of the Society of
Christian Ethics 24, no. 1 (2004): 195–204.
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2
Moral Character
Chapter 1 concentrated on moral norms in the form of principles, rules, obligations, and rights. This chapter
focuses on moral character, especially moral virtues, moral ideals, and moral excellence. These categories
complement those in the previous chapter. The moral norms discussed in Chapter 1 chiefly govern right and
wrong action. By contrast, character ethics and virtue ethics concentrate on the agent who performs actions and
the virtues that make agents morally worthy persons.1
The goals and structure of medicine, health care, public health, and research call for a deep appreciation of moral
virtues. What often matters most in health care interactions and in the moral life generally is not adherence to
moral rules but having a reliable character, good moral sense, and appropriate emotional responsiveness. Even
carefully specified principles and rules do not convey what occurs when parents lovingly play with and nurture
their children or when physicians and nurses exhibit compassion, patience, and responsiveness in their
encounters with patients and families. The feelings and concerns for others that motivate us to take actions often
cannot be reduced to a sense of obligation to follow rules. Morality would be a cold and uninspiring practice
without appropriate sympathy, emotional responsiveness, excellence of character, and heartfelt ideals that reach
beyond principles and rules.
Some philosophers have questioned the place of virtues in moral theory. They see virtues as less central than
action-guiding norms and as difficult to unify in a systematic theory, in part because there are many independent
virtues to be considered. Utilitarian Jeremy Bentham famously complained that there is “no marshaling” the
virtues and vices because “they are susceptible of no arrangement; they are a disorderly body, whose members
are frequently in hostility with one another. … Most of them are characterized by that vagueness which is a
convenient instrument for the poetical, but dangerous or useless to the practical moralist.”2
Although principles and virtues are different and learned in different ways, virtues are no less important in the
moral life, and in some contexts are probably more important. In Chapter 9, we examine virtue ethics as a type
of moral theory and address challenges and criticisms such as Bentham’s. In the first few sections of the present
chapter, we analyze the concept of virtue; examine virtues in professional roles; treat the moral virtues of care,
caregiving, and caring in health care; and explicate five other focal virtues in both health care and research.
THE CONCEPT OF MORAL VIRTUE
A virtue is a dispositional trait of character that is socially valuable and reliably present in a person, and a moral
virtue is a dispositional trait of character that is morally valuable and reliably present. If cultures or social groups
approve a trait and regard it as moral, their approval is not sufficient to qualify the trait as a moral virtue. Moral
virtue is more than a personal, dispositional trait that is socially approved in a particular group or culture.3 This
approach to the moral virtues accords with our conclusion in Chapter 1 that the common morality excludes
provisions found only in so-called cultural moralities and individual moralities. The moral virtues, like moral
principles, are part of the common morality.
Some define the term moral virtue as a disposition to act or a habit of acting in accordance with, and with the
aim of following, moral principles, obligations, or ideals.4 For example, they understand the moral virtue of
nonmalevolence as the trait of abstaining from causing harm to others when it would be wrong to cause harm.
However, this definition unjustifiably views virtues as merely derivative from and dependent on principles and
fails to capture the importance of moral motives. We care morally about people’s motives, and we care
especially about their characteristic motives and dispositions, that is, the motivational structures embedded in
their character. Persons who are motivated through impartial sympathy and personal affection, for example, are
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likely to meet our moral approval, whereas persons who act similarly, but are motivated merely by personal
ambition, do not.
Consider a person who discharges moral obligations only because they are moral requirements while intensely
disliking being obligated to place the interests of others above his or her personal interests and projects. This
person does not feel friendly toward or cherish others and respects their wishes only because moral obligation
requires it. If this person’s motive is deficient, a critical moral ingredient is missing even though he or she
consistently performs morally right actions and has a disposition to perform right actions. When a person
characteristically lacks an appropriate motivational structure, a necessary condition of virtuous character is
absent. The act may be right and the actor blameless, but neither the act nor the actor is virtuous. People may be
disposed to do what is right, intend to do it, and do it, while simultaneously yearning to avoid doing it. Persons
who characteristically perform morally right actions from such a motivational structure are not morally virtuous
even if they invariably perform the morally right action.
Such a person has a morally deficient character, and he or she performs morally right actions for reasons or
feelings disconnected from moral motivation. A philanthropist’s gift of a new wing of a hospital will be
recognized by hospital officials and by the general public as a generous gift, but if the philanthropist is
motivated only by a felt need for public praise and only makes the gift to gain such praise, there is a discordance
between those feelings and the performance of the praised action. Feelings, intentions, and motives are morally
important in a virtue theory in a way that may be lost or obscured in an obligation-based theory.5
VIRTUES IN PROFESSIONAL ROLES
Persons differ in their sets of character traits. Most individuals have some virtues and some vices while lacking
other virtues and vices. However, all persons with normal moral capacities can cultivate the character traits
centrally important to morality such as honesty, fairness, fidelity, truthfulness, and benevolence. In professional
life in health care and research, the traits that warrant encouragement and admiration often derive from role
responsibilities. Some virtues are essential for enacting these professional roles, and certain vices are intolerable
in professional life. Accordingly, we turn now to virtues that are critically important in professional and
institutional roles and practices in biomedical fields.
Virtues in Roles and Practices
Professional roles are grounded in institutional expectations and governed by established standards of
professional practice. Roles internalize conventions, customs, and procedures of teaching, nursing, doctoring,
and the like. Professional practice has traditions that require professionals to cultivate certain virtues. Standards
of virtue incorporate criteria of professional merit, and possession of these virtues disposes persons to act in
accordance with the objectives of the practices.
In the practice of medicine, several goods internal to the profession are appropriately associated with being a
good physician. These goods include specific moral and nonmoral skills in the care of patients, the application of
specific forms of knowledge, and the teaching of health behaviors. They are achievable only if one lives up to
the standards of the good physician, standards that in part define the practice. A practice is not merely a set of
technical skills. Practices should be understood in terms of the respect that practitioners have for the goods
internal to the practices. Although these practices sometimes need to be revised, the historical development of a
body of standards has established many practices now found at the heart of medicine, nursing, and public
health.6
Roles, practices, and virtues in medicine, nursing, and other health care and research professions reflect social
expectations as well as standards and ideals internal to these professions.7 The virtues we highlight in this
chapter are care—a fundamental virtue for health care relationships—along with five focal virtues found in all
health care professions: compassion, discernment, trustworthiness, integrity, and conscientiousness, all of which
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support and promote caring and caregiving. Elsewhere in this chapter and in later chapters, we discuss other
virtues, including respectfulness, nonmalevolence, benevolence, justice, truthfulness, and fidelity.
To illustrate the difference between standards of moral character in a profession and standards of technical
performance in a profession, we begin with an instructive study of surgical error. Charles L. Bosk’s influential
Forgive and Remember: Managing Medical Failure presents an ethnographic study of the way two surgical
services handle medical failure, especially failures by surgical residents in “Pacific Hospital” (a name substituted
for the hospitals actually studied).8 Bosk found that both surgical services distinguish, at least implicitly,
between several different forms of error or mistake. The first form is technical: A professional discharges role
responsibilities conscientiously, but his or her technical training or information still falls short of what the task
requires. Every surgeon will occasionally make this sort of mistake. A second form of error is judgmental: A
conscientious professional develops and follows an incorrect strategy. These errors are also to be expected.
Attending surgeons forgive momentary technical and judgmental errors but remember them in case a pattern
develops indicating that a surgical resident lacks the technical and judgmental skills to be a competent surgeon.
A third form of error is normative: A physician violates a norm of conduct or fails to possess a moral skill,
particularly by failing to discharge moral obligations conscientiously or by failing to acquire and exercise critical
moral virtues such as conscientiousness. Bosk concludes that surgeons regard technical and judgmental errors as
less important than moral errors, because every conscientious person can be expected to make “honest errors” or
“good faith errors,” whereas moral errors such as failures of conscientiousness are considered profoundly serious
when a pattern indicates a defect of character.
Bosk’s study indicates that persons of high moral character acquire a reservoir of goodwill in assessments of
either the praiseworthiness or the blameworthiness of their actions. If a conscientious surgeon and another
surgeon who is not adequately conscientious make the same technical or judgmental errors, the conscientious
surgeon will not be subjected to moral blame to the same degree as the other surgeon.
Virtues in Different Professional Models
Professional virtues were historically integrated with professional obligations and ideals in codes of health care
ethics. Insisting that the medical profession’s “prime objective” is to render service to humanity, an American
Medical Association (AMA) code in effect from 1957 to 1980 urged the physician to be “upright” and “pure in
character and … diligent and conscientious in caring for the sick.” It endorsed the virtues that Hippocrates
commended: modesty, sobriety, patience, promptness, and piety. However, in contrast to its first code of 1847,
the AMA over the years has increasingly de-emphasized virtues in its codes. The 1980 version for the first time
eliminated all trace of the virtues except for the admonition to expose “those physicians deficient in character or
competence.” This pattern of de-emphasis regrettably still continues.
Thomas Percival’s 1803 book, Medical Ethics, is a classic example of an attempt to establish the proper set of
virtues in medicine. Starting from the assumption that the patient’s best medical interest is the proper goal of
medicine, Percival reached conclusions about the good physician’s traits of character, which were primarily tied
to responsibility for the patient’s medical welfare.9 This model of medical ethics supported medical paternalism
with effectively no attention paid to respect for patients’ autonomous choices.
In traditional nursing, where the nurse was often viewed as the “handmaiden” of the physician, the nurse was
counseled to cultivate the passive virtues of obedience and submission. In contemporary models in nursing, by
contrast, active virtues have become more prominent. For example, the nurse’s role is now often regarded as one
of advocacy for patients.10 Prominent virtues include respectfulness, considerateness, justice, persistence, and
courage.11 Attention to patients’ rights and preservation of the nurse’s integrity also have become increasingly
prominent in some contemporary models.
The conditions under which ordinarily praiseworthy virtues become morally unworthy present thorny ethical
issues. Virtues such as loyalty, courage, generosity, kindness, respectfulness, and benevolence at times lead
persons to act inappropriately and unacceptably. For instance, the physician or nurse who acts kindly and loyally
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by not reporting the incompetence of a fellow physician or nurse acts unethically. This failure to report
misconduct does not suggest that loyalty and kindness are not virtues. It indicates only that the virtues need to be
accompanied by an understanding of what is right and good and of what deserves loyalty, kindness, generosity,
and the like.
THE CENTRAL VIRTUE OF CARING
As the language of health care, medical care, and nursing care suggests, the virtue of care, or caring, is
prominent in professional ethics. We treat this virtue as fundamental in relationships, practices, and actions in
health care. In explicating this family of virtues we draw on what has been called the ethics of care, which we
interpret as a form of virtue ethics.12 The ethics of care emphasizes traits valued in intimate personal
relationships such as sympathy, compassion, fidelity, and love. Caring refers to care for, emotional commitment
to, and willingness to act on behalf of persons with whom one has a significant relationship. Caring for is
expressed in actions of “caregiving,” “taking care of,” and “due care.” The nurse’s or physician’s trustworthiness
and quality of care and sensitivity in the face of patients’ problems, needs, and vulnerabilities are integral to
their professional moral lives.
The ethics of care emphasizes what physicians and nurses do—for example, whether they break or maintain
confidentiality—and how they perform those actions, which motives and feelings underlie them, and whether
their actions promote or thwart positive relationships.
The Origins of the Ethics of Care
The ethics of care, understood as a form of philosophical ethics, originated and continues to flourish in feminist
writings. The earliest works emphasized how women display an ethic of care, by contrast to men, who
predominantly exhibit an ethic of rights and obligations. Psychologist Carol Gilligan advanced the influential
hypothesis that “women speak in a different voice”—a voice that traditional ethical theory failed to appreciate.
She discovered “the voice of care” through empirical research involving interviews with girls and women. This
voice, she maintained, stresses empathic association with others, not based on “the primacy and universality of
individual rights, but rather on … a very strong sense of being responsible.”13
Gilligan identified two modes of moral thinking: an ethic of care and an ethic of rights and justice. She did not
claim that these two modes of thinking strictly correlate with gender or that all women or all men speak in the
same moral voice.14 She maintained only that men tend to embrace an ethic of rights and justice that uses quasi-
legal terminology and impartial principles, accompanied by dispassionate balancing and conflict resolution,
whereas women tend to affirm an ethic of care that centers on responsiveness in an interconnected network of
needs, care, and prevention of harm.15
Criticisms of Traditional Theories by Proponents of an Ethics of Care
Proponents of the care perspective often criticize traditional ethical theories that tend to de-emphasize virtues of
caring. Two criticisms merit consideration here.16
Challenging impartiality. Some proponents of the care perspective argue that theories of obligation unduly
telescope morality by overemphasizing detached fairness. This orientation is suitable for some moral
relationships, especially those in which persons interact as equals in a public context of impersonal justice and
institutional constraints, but moral detachment also may reflect a lack of caring responsiveness. In the extreme
case, detachment becomes uncaring indifference. Lost in the detachment of impartiality is an attachment to what
we care about most and is closest to us—for example, our loyalty to family, friends, and groups. Here partiality
toward others is morally permissible and is an expected form of interaction. This kind of partiality is a feature of
the human condition without which we might impair or sever our most important relationships.17
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Proponents of a care ethics do not recommend complete abandonment of principles if principles are understood
to allow room for discretionary and contextual judgment. However, some defenders of the ethics of care find
principles largely irrelevant, ineffectual, or unduly constrictive in the moral life. A defender of principles could
hold that principles of care, compassion, and kindness tutor our responses in caring, compassionate, and kind
ways. But this attempt to rescue principles seems rather empty. Moral experience confirms that we often do rely
on our emotions, capacity for sympathy, sense of friendship, and sensitivity to find appropriate moral responses.
We could produce rough generalizations about how caring clinicians should respond to patients, but such
generalizations cannot provide adequate guidance for all interactions. Each situation calls for responses beyond
following rules, and actions that are caring in one context may be offensive or even harmful in another.
Relationships and emotion. The ethics of care places special emphasis on mutual interdependence and
emotional responsiveness. Many human relationships in health care and research involve persons who are
vulnerable, dependent, ill, and frail. Feeling for and being immersed in the other person are vital aspects of a
moral relationship with them.18 A person seems morally deficient if he or she acts according to norms of
obligation without appropriately aligned feelings, such as concern and sympathy for a patient who is suffering.
Good health care often involves insight into the needs of patients and considerate attentiveness to their
circumstances.19
In the history of human experimentation, those who first recognized that some subjects of research were
brutalized, subjected to misery, or placed at unjustifiable risk were persons able to feel sympathy, compassion,
disgust, and outrage about the situation of these research subjects. They exhibited perception of and sensitivity
to the feelings of subjects where others lacked comparable perceptions, sensitivities, and responses. This
emotional sensitivity does not reduce moral response to emotional response. Caring has a cognitive dimension
and requires a range of moral skills that involve insight into and understanding of another’s circumstances,
needs, and feelings.
One proponent of the ethics of care argues that action is sometimes appropriately principle-guided, but not
necessarily always governed by or derived from principles.20 This statement moves in the right direction for
construction of a comprehensive moral framework. We need not reject principles of obligation in favor of virtues
of caring, but moral judgment involves moral skills beyond those of specifying and balancing general principles.
An ethic that emphasizes the virtues of caring well serves health care because it is close to the relationships and
processes of decision making found in clinical contexts, and it provides insights into basic commitments of
caring and caretaking. It also liberates health professionals from the narrow conceptions of role responsibilities
that have been delineated in some professional codes of ethics.
FIVE FOCAL VIRTUES
We now turn to five focal virtues for health professionals: compassion, discernment, trustworthiness, integrity,
and conscientiousness. These virtues are important for the development and expression of caring, which we have
presented as a fundamental orienting virtue in health care. These five additional virtues provide a moral compass
of character for health professionals that builds on centuries of thought about health care ethics.21
Compassion
Compassion, says Edmund Pellegrino, is a “prelude to caring.”22 The virtue of compassion combines an attitude
of active regard for another’s welfare together with sympathy, tenderness, and discomfort at another’s
misfortune or suffering.23 Compassion presupposes sympathy, has affinities with mercy, and is expressed in acts
of beneficence that attempt to alleviate the misfortune or suffering of another person.
Nurses and physicians must understand the feelings and experiences of patients to respond appropriately to them
and their illnesses and injuries—hence the importance of empathy, which involves sensing or even
reconstructing another person’s mental experience, whether that experience is negative or positive.24 As
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important as empathy is for compassion and other virtues, the two are different, and empathy does not always
lead to compassion. Some literature on professionalism in medicine and health care now focuses on empathy
rather than compassion, but this literature risks making the mistake of viewing empathy alone as sufficient for
humanizing medicine and health care while overlooking its potential dangers.25
Compassion generally focuses on others’ pain, suffering, disability, or misery—the typical occasions for
compassionate response in health care. Using the language of sympathy, eighteenth-century philosopher David
Hume pointed to a typical circumstance of compassion in surgery and explained how such feelings arise:
Were I present at any of the more terrible operations of surgery, ‘tis certain, that even before it
begun, the preparation of the instruments, the laying of the bandages in order, the heating of the
irons, with all the signs of anxiety and concern in the patient and assistants, wou’d have a great
effect upon my mind, and excite the strongest sentiments of pity and terror. No passion of another
discovers itself immediately to the mind. We are only sensible of its causes or effects. From these
we infer the passion: And consequently these give rise to our sympathy.26
Physicians and nurses who express little or no compassion in their behavior may fail to provide what patients
need most. The physician, nurse, or social worker altogether lacking in the appropriate display of compassion
has a moral weakness. However, compassion also can cloud judgment and preclude rational and effective
responses. In one reported case, a long-alienated son wanted to continue a futile and painful treatment for his
near-comatose father in an intensive care unit (ICU) to have time to “make his peace” with his father. Although
the son understood that his alienated father had no cognitive capacity, the son wanted to work through his sense
of regret and say a proper good-bye. Some hospital staff argued that the patient’s grim prognosis and pain,
combined with the needs of others waiting to receive care in the ICU, justified stopping the treatment, as had
been requested by the patient’s close cousin and informal guardian. Another group in the unit regarded continued
treatment as an appropriate act of compassion toward the son, who they thought should have time to express his
farewells and regrets to make himself feel better about his father’s death. The first group, by contrast, viewed
this expression of compassion as misplaced because of the patient’s prolonged agony and dying. In effect, those
in the first group believed that the second group’s compassion prevented clear thinking about primary
obligations to this patient.27
Numerous writers in the history of ethical theory have proposed a cautious approach to compassion. They argue
that a passionate, or even a compassionate, engagement with others can blind reason and prevent impartial
reflection. Health care professionals understand and appreciate this phenomenon. Constant contact with
suffering can overwhelm and even paralyze a compassionate physician or nurse. Impartial judgment sometimes
gives way to impassioned decisions, and emotional burnout can arise. To counteract this problem, medical
education and nursing education are well designed when they inculcate detachment alongside compassion. The
language of detached concern and compassionate detachment came to the fore in this context.
Discernment
The virtue of discernment brings sensitive insight, astute judgment, and understanding to bear on action.
Discernment involves the ability to make fitting judgments and reach decisions without being unduly influenced
by extraneous considerations, fears, personal attachments, and the like. Some writers closely associate
discernment with practical wisdom, or phronesis, to use Aristotle’s widely used term. A person of practical
wisdom knows which ends to choose, knows how to realize them in particular circumstances, and carefully
selects from among the range of possible actions, while keeping emotions within proper bounds. In Aristotle’s
model, the practically wise person understands how to act with the right intensity of feeling, in just the right
way, at just the right time, with a proper balance of reason and desire.28
A discerning person is disposed to understand and perceive what circumstances demand in the way of human
responsiveness. For example, a discerning physician will see when a despairing patient needs comfort rather
than privacy, and vice versa. If comfort is the right choice, the discerning physician will find the right type and
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level of consolation to be helpful rather than intrusive. If a rule guides action in a particular case, seeing how to
best follow the rule involves a form of discernment that is independent of seeing that the rule applies.
Accordingly, the virtue of discernment involves understanding both that and how principles and rules apply.
Acts of respect for autonomy and beneficence therefore will vary in health care contexts, and the ways in which
clinicians discerningly implement these principles in the care of patients will be as different as the many ways in
which devoted parents care for their children.
Trustworthiness
Virtues, Annette Baier maintains, “are personal traits that contribute to a good climate of trust between people,
when trust is taken to be acceptance of being, to some degree and in some respects, in another’s power.”29 Trust
is a confident belief in and reliance on the moral character and competence of another person, often a person
with whom one has an intimate or established relationship. Trust entails a confidence that another will reliably
act with the right motives and feelings and in accordance with appropriate moral norms.30 To be trustworthy is
to warrant another’s confidence in one’s character and conduct.
Traditional ethical theories rarely mention either trust or trustworthiness. However, Aristotle took note of one
important aspect of trust and trustworthiness. He maintained that when relationships are voluntary and among
intimates, by contrast to legal relationships among strangers, it is appropriate for the law to forbid lawsuits for
harms that occur. Aristotle reasoned that intimate relationships involving “dealings with one another as good and
trustworthy” hold persons together more than “bonds of justice” do.31
Nothing is more valuable in health care organizations and contexts than the maintenance of a culture of trust.
Trust and trustworthiness are essential when patients are vulnerable and place their hope and their confidence in
health care professionals. A true climate of trust is endangered in contemporary health care institutions, as
evidenced by the number of medical malpractice suits and adversarial relations between health care
professionals and the public. Overt distrust has been engendered by mechanisms of managed care, because of
the incentives some health care organizations create for physicians to limit the amount and kinds of care they
provide to patients. Appeals have increased for ombudsmen, patient advocates, legally binding “directives” to
physicians, and the like. Among the contributing causes of the erosion of a climate of trust are the loss of
intimate contact between physicians and patients, the increased use of specialists, the lack of adequate access to
adequate health care insurance, and the growth of large, impersonal, and bureaucratic medical institutions.32
Integrity
Some writers in bioethics hold that the primary virtue in health care is integrity.33 People often justify their
actions or refusals to act on grounds that they would otherwise compromise or sacrifice their integrity. Later in
this chapter we discuss appeals to integrity as invocations of conscience, but we confine attention at present to
the virtue of integrity.
The central place of integrity in the moral life is beyond dispute, but what the term means is less clear. In its
most general sense, “moral integrity” means soundness, reliability, wholeness, and integration of moral
character. In a more restricted sense, the term refers to objectivity, impartiality, and fidelity in adherence to
moral norms. Accordingly, the virtue of integrity represents two aspects of a person’s character. The first is a
coherent integration of aspects of the self—emotions, aspirations, knowledge, and the like—so that each
complements and does not frustrate the others. The second is the character trait of being faithful to moral values
and standing up in their defense when necessary. A person can lack moral integrity in several respects—for
example, through hypocrisy, insincerity, bad faith, and self-deception. These vices represent breaks in the
connections among a person’s moral convictions, emotions, and actions. The most common deficiency is
probably a lack of sincerely and firmly held moral convictions, but no less important is the failure to act
consistently on the moral beliefs that one does hold.
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Problems in maintaining integrity may also arise from a conflict of moral norms, or from moral demands that
require persons to halt or abandon personal goals and projects. Persons may experience a sense of loss of their
autonomy and feel violated by the demand to sacrifice their personal commitments and objectives.34 For
example, if a nurse is the only person in her family who can properly manage her mother’s health, health care,
prescription medications, nursing home arrangements, explanations to relatives, and negotiations with
physicians, little time may be left for her personal projects and commitments. Such situations can deprive
persons of the liberty to structure and integrate their lives as they choose. If a person has structured his or her life
around personal goals that are ripped away by the needs and agendas of others, a loss of personal integrity
occurs.
Problems of professional integrity often center on wrongful conduct in professional life. When breaches of
professional integrity involve violations of professional standards, they are viewed as violations of the rules of
professional associations, codes of medical ethics, or medical traditions,35 but this vision of integrity needs to be
broadened. Breaches of professional integrity also occur when a physician prescribes a drug that is no longer
recommended for the outcome needed, enters into a sexual relationship with a patient, or follows a living will
that calls for a medically inappropriate intervention.
Sometimes conflicts arise between a person’s sense of moral integrity and what is required for professional
integrity. Consider medical practitioners who, because of their religious commitments to the sanctity of life, find
it difficult to participate in decisions not to do everything possible to prolong life. To them, participating in
removing ventilators and intravenous fluids from patients, even from patients with a clear advance directive,
violates their moral integrity. Their commitments may create morally troublesome situations in which they must
either compromise their fundamental commitments or withdraw from the care of the patient. Yet compromise
seems what a person, or an organization, of integrity cannot do, because it involves the sacrifice of deep moral
commitments.36
Health care facilities cannot entirely eliminate these and similar problems of staff disagreement and conflicting
commitments, but persons with the virtues of patience, humility, and tolerance can help reduce the problems.
Situations that compromise integrity can be ameliorated if participants anticipate the problem before it arises and
recognize the limits and fallibility of their personal moral views. Participants in a dispute may also have recourse
to consultative institutional processes, such as hospital ethics committees. However, it would be ill-advised to
recommend that a person of integrity can and should always negotiate and compromise his or her values in an
intrainstitutional confrontation. There is something ennobling and admirable about the person or organization
that refuses to compromise beyond a certain carefully considered moral threshold. To compromise below the
threshold of integrity is simply to lose it.
Conscientiousness
The subject of integrity and compromise leads directly to a discussion of the virtue of conscientiousness and
accounts of conscience. An individual acts conscientiously if he or she is motivated to do what is right because it
is right, has worked with due diligence to determine what is right, intends to do what is right, and exerts
appropriate effort to do so. Conscientiousness is the character trait of acting in this way.
Conscience and conscientiousness. Conscience has often been viewed as a mental faculty of, and authority for,
moral decision making.37 Slogans such as “Let your conscience be your guide” suggest that conscience is the
final authority in moral justification. However, such a view fails to capture the nature of either conscience or
conscientiousness, as the following case presented by Bernard Williams helps us see: Having recently completed
his PhD in chemistry, George has not been able to find a job. His family has suffered from his failure. They are
short of money, his wife has had to take additional work, and their small children have been subjected to
considerable strain, uncertainty, and instability. An established chemist can get George a position in a laboratory
that pursues research on chemical and biological weapons. Despite his perilous financial and familial
circumstances, George concludes that he cannot accept this position because of his conscientious opposition to
chemical and biological warfare. The senior chemist notes that the research will continue no matter what George
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decides. Furthermore, if George does not take this position, it will be offered to another young man who would
vigorously pursue the research. Indeed, the senior chemist confides, his concern about the other candidate’s
nationalistic fervor and uncritical zeal for research in chemical and biological warfare motivated him to
recommend George for the job. George’s wife is puzzled and hurt by George’s reaction. She sees nothing wrong
with the research. She is profoundly concerned about their children’s problems and the instability of their family.
Nonetheless, George forgoes this opportunity both to help his family and to prevent a destructive fanatic from
obtaining the position. He says his conscience stands in the way.38
Conscience, as this example suggests, is neither a special moral faculty nor a self-justifying moral authority. It is
a form of self-reflection about whether one’s acts are obligatory or prohibited, right or wrong, good or bad,
virtuous or vicious. It involves an internal sanction that comes into play through critical reflection. When
individuals recognize their acts as violations of an appropriate standard, this sanction often appears as a bad
conscience in the form of feelings of remorse, guilt, shame, disunity, or disharmony. A conscience that sanctions
conduct in this way does not signify bad moral character. To the contrary, this experience of conscience is most
likely to occur in persons of strong moral character and may even be a necessary condition of morally good
character.39 Kidney donors have been known to say, “I had to do it. I couldn’t have backed out, not that I had the
feeling of being trapped, because the doctors offered to get me out. I just had to do it.”40 Such judgments derive
from ethical standards that are sufficiently powerful that violating them would diminish integrity and result in
guilt or shame.41
When people claim that their actions are conscientious, they sometimes feel compelled by conscience to resist
others’ authoritative demands. Instructive examples are found in military physicians who believe they must
answer first to their consciences and cannot plead “superior orders” when commanded by a superior officer to
commit what they believe to be a moral wrong. Agents sometimes act out of character in order to perform what
they judge to be the morally appropriate action. For example, a normally cooperative and agreeable physician
may indignantly, but justifiably, protest an insurance company’s decision not to cover the costs of a patient’s
treatment. Such moral indignation and outrage can be appropriate and admirable.
Conscientious refusals. Conscientious objections and refusals by physicians, nurses, pharmacists, and other
health care professionals raise difficult issues for public policy, professional organizations, and health care
institutions. Examples are found in a physician’s refusal to honor a patient’s legally valid advance directive to
withdraw artificial nutrition and hydration, a nurse’s refusal to participate in an abortion or sterilization
procedure, and a pharmacist’s refusal to fill a prescription for an emergency contraception. There are good
reasons to promote conscientiousness and to respect such acts of conscience in many, though not all, cases.
Respecting conscientious refusals in health care is an important value, and these refusals should be
accommodated unless there are overriding conflicting values. Banning or greatly restricting conscientious
refusals in health care could have several negative consequences. It could, according to one analysis, negatively
affect the type of people who choose medicine as their vocation and how practicing physicians view and
discharge professional responsibilities. It could also foster “callousness” and encourage physicians’
“intolerance” of diverse moral beliefs among their patients (and perhaps among their colleagues as well).42
These possible negative effects are somewhat speculative, but they merit consideration in forming institutional
and public policies.
Also meriting consideration is that some conscientious refusals adversely affect patients’ and others’ legitimate
interests in (1) timely access, (2) safe and effective care, (3) respectful care, (4) nondiscriminatory treatment, (5)
care that is not unduly burdensome, and (6) privacy and confidentiality. Hence, public policy, professional
associations, and health care institutions should seek to recognize and accommodate conscientious refusals as
long as they can do so without seriously compromising patients’ rights and interests. The metaphor of balancing
professionals’ and patients’ rights and interests is commonly used to guide efforts to resolve such conflicts, but it
offers only limited guidance and no single model of appropriate response covers all cases.43
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Institutions such as hospitals and pharmacies can often ensure the timely performance of needed or requested
services while allowing conscientious objectors not to perform those services.44 However, ethical problems arise
when, for example, a pharmacist refuses, on grounds of complicity in moral wrongdoing, to transfer a
consumer’s prescription or to inform the consumer of pharmacies that would fill the prescription. According to
one study, only 86% of US physicians surveyed regard themselves as obligated to disclose information about
morally controversial medical procedures to patients, and only 71% of US physicians recognize an obligation to
refer patients to another physician for such controversial procedures.45 Consequently, millions of patients in the
United States may be under the care of physicians who do not recognize these obligations or are undecided
about them.
At a minimum, in our view, health care professionals have an ethical duty to inform prospective employers and
prospective patients, clients, and consumers in advance of their personal conscientious objections to performing
vital services. Likewise, they have an ethical duty to disclose options for obtaining legal, albeit morally
controversial, services; and sometimes they have a duty to provide a referral for those services. They also may
have a duty to perform the services in emergency circumstances when the patient is at risk of adverse health
effects and a timely referral is not possible.46
Determining the appropriate scope of protectable conscientious refusals is a vexing problem, particularly when
the refusals involve expansive notions of what counts as assisting or participating in the performance of a
personally objectionable action. Such expansive notions sometimes include actions that are only indirectly
related to the objectionable procedure. For example, some nurses have claimed conscientious exemption from all
forms of participation in the care of patients having an abortion or sterilization, including filling out admission
forms or providing post-procedure care. It is often difficult and sometimes impractical for institutions to pursue
their mission while exempting objectors to such broadly delineated forms of participation in a procedure.
MORAL IDEALS
We argued in Chapter 1 that norms of obligation in the common morality constitute a moral minimum of
requirements that govern everyone. These standards differ from extraordinary moral standards that are not
required of any person. Moral ideals such as extraordinary generosity are rightly admired and approved by all
morally committed persons, and in this respect they are part of the common morality. Extraordinary moral
standards come from a morality of aspiration in which individuals, communities, or institutions adopt high ideals
not required of others. We can praise and admire those who live up to these ideals, but we cannot blame or
criticize persons who do not pursue the ideals.
A straightforward example of a moral ideal in biomedical ethics is found in “expanded access” or
“compassionate use” programs that—prior to regulatory approval—authorize access to an investigational drug
or device for patients with a serious or immediately life-threatening disease or condition. These patients have
exhausted available therapeutic options and are situated so that they cannot participate in a clinical trial of a
comparable investigational product. Although it is compassionate and justified to provide some investigational
products for therapeutic use, it is generally not obligatory to do so. These programs are compassionate,
nonobligatory, and motivated by a goal of providing a good to these patients. The self-imposed moral
commitment by the sponsors of the investigational product usually springs from moral ideals of communal
service or providing a benefit to individual patients. (See Chapter 6, pp. 224–27, for additional discussion of
expanded access programs.)
With the addition of moral ideals, we now have four categories pertaining to moral action: (1) actions that are
right and obligatory (e.g., truth-telling); (2) actions that are wrong and prohibited (e.g., murder and rape); (3)
actions that are optional and morally neutral, and so neither wrong nor obligatory (e.g., playing chess with a
friend); and (4) actions that are optional but morally meritorious and praiseworthy (e.g., sending flowers to a
hospitalized friend). We concentrated on the first two in Chapter 1, occasionally mentioning the third. We now
focus exclusively on the fourth.
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Supererogation and Virtue
Supererogation is a category of moral ideals pertaining principally to ideals of action, but it has important links
both to virtues and to Aristotelian ideals of moral excellence.47 The etymological root of supererogation means
paying or performing beyond what is owed or, more generally, doing more than is required. This notion has four
essential conditions. First, supererogatory acts are optional and neither required nor forbidden by common-
morality standards of obligation. Second, supererogatory acts exceed what the common morality of obligation
demands, but at least some moral ideals are endorsed by all persons committed to the common morality. Third,
supererogatory acts are intentionally undertaken to promote the welfare interests of others. Fourth,
supererogatory acts are morally good and praiseworthy in themselves and are not merely acts undertaken with
good intentions.
Despite the first condition, individuals who act on moral ideals do not always consider their actions to be
morally optional. Many heroes and saints describe their actions in the language of ought, duty, and necessity: “I
had to do it.” “I had no choice.” “It was my duty.” The point of this language is to express a personal sense of
obligation, not to state a general obligation. The agent accepts, as a pledge or assignment of personal
responsibility, a norm that lays down what ought to be done. At the end of Albert Camus’s The Plague, Dr.
Rieux decides to make a record of those who fought the pestilence. It is to be a record, he says, of “what had to
be done … despite their personal afflictions, by all who, while unable to be saints but refusing to bow down to
pestilences, strive their utmost to be healers.”48 Such healers accept exceptional risks and thereby exceed the
obligations of the common morality and of professional associations and traditions.
Many supererogatory acts would be morally obligatory were it not for some abnormal adversity or risk in the
face of which the individual elects not to invoke an allowed exemption based on the adversity or risk.49 If
persons have the strength of character that enables them to resist extreme adversity or assume additional risk to
fulfill their own conception of their obligations, it makes sense to accept their view that they are under a self-
imposed obligation. The hero who says, “I was only doing my duty,” is speaking as one who accepts a standard
of moral excellence. This hero does not make a mistake in regarding the action as personally required and can
view failure as grounds for guilt, although no one else is free to evaluate the act as a moral failure.
Despite the language of “exceptional” and “extreme adversity,” not all supererogatory acts are extraordinarily
arduous, costly, or risky. Examples of less demanding forms of supererogation include generous gift-giving,
volunteering for public service, forgiving another’s costly error, and acting from exceptional kindness. Many
everyday actions exceed obligation without reaching the highest levels of supererogation. For example, a nurse
may put in extra hours of work during the day and return to the hospital at night to visit patients. This nurse’s
actions are morally excellent, but he or she does not thereby qualify as a saint or hero.
Often we are uncertain whether an action exceeds obligation because the boundaries of obligation and
supererogation are ill defined. There may be no clear norm of action, only a virtue of character at work. For
example, what is a nurse’s role obligation to desperate, terminally ill patients who cling to the nurse for comfort
in their few remaining days? If the obligation is that of spending forty hours a week conscientiously fulfilling a
job description, the nurse exceeds that obligation by just a few off-duty visits to patients. If the obligation is
simply to help patients overcome burdens and meet a series of challenges, a nurse who does so while displaying
extraordinary patience, fortitude, and friendliness well exceeds the demands of obligation. Health care
professionals sometimes live up to what would ordinarily be a role obligation (such as complying with basic
standards of care) while making a sacrifice or taking an additional risk. These cases exceed obligation, but they
may not qualify as supererogatory actions.
The Continuum from Obligation to Supererogation
Our analysis may seem to suggest that actions should be classified as either obligatory or beyond the obligatory.
The better view, however, is that actions sometimes do not fit neatly into these categories because they fall
between the two. Common morality distinctions and ethical theory are not precise enough to determine whether
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all actions are morally required or morally elective. This problem is compounded in professional ethics, because
professional roles engender obligations that do not bind persons who do not occupy the relevant professional
roles. Hence, the two “levels” of the obligatory and the supererogatory lack sharp boundaries both in the
common morality and in professional ethics.
Actions may be strictly obligatory, beyond the obligatory, or somewhere between these two classifications. A
continuum runs from strict obligation (such as the obligations in the core principles and rules in the common
morality) through weaker obligations that are still within the scope of the morally required (such as double-
checking one’s professional work to be sure that no medical errors have occurred), and on to the domain of the
morally nonrequired and the exceptionally virtuous. The nonrequired starts with low-level supererogation, such
as walking a visitor lost in a hospital’s corridors to a doctor’s office. Here an absence of generosity or kindness
in helping someone may constitute a small defect in the moral life rather than a failure of obligation. The
continuum ends with high-level supererogation, such as heroic acts of self-sacrifice, as in highly risky medical
self-experimentation. A continuum exists on each level. The following diagram represents the continuum.
images
This continuum moves from strict obligation to the most arduous and elective moral ideal. The horizontal line
represents a continuum with rough, not sharply defined, breaks. The middle vertical line divides the two general
categories but is not meant to indicate a sharp break. Accordingly, the horizontal line expresses a continuum
across the four lower categories and expresses the scope of the common morality’s reach into the domains of
both moral obligations and nonobligatory moral ideals.
Joel Feinberg argues that supererogatory acts are “located on an altogether different scale than obligations.”50
The preceding diagram suggests that this comment is correct in one respect but incorrect in another. The right
half of the diagram is not scaled by obligation, whereas the left half is. In this respect, Feinberg’s comment is
correct. However, the full horizontal line is connected by a single scale of moral value in which the right is
continuous with the left. For example, obligatory acts of beneficence and supererogatory acts of beneficence are
on the same scale because they are morally of the same kind. The domain of supererogatory ideals is continuous
with the domain of norms of obligation by exceeding those obligations in accordance with the several defining
conditions of supererogation listed previously.
The Place of Ideals in Biomedical Ethics
Many beneficent actions by health care professionals straddle the territory marked in the preceding diagram
between Obligation and Beyond Obligation (in particular, the territory between [2] and [3]). Matters become
more complicated when we introduce the distinction discussed in Chapter 1 between professional obligations
and obligations incumbent on everyone. Many moral duties established by roles in health care are not moral
obligations for persons not in these roles. These duties in medicine and nursing are profession-relative, and some
are role obligations even when not formally stated in professional codes. For example, the expectation that
physicians and nurses will encourage and cheer despondent patients is a profession-imposed obligation, though
not one typically incorporated in a professional code of ethics.
Some customs in the medical community are not well established as obligations, such as the belief that
physicians and nurses should efface self-interest and take risks in attending to patients. The nature of
“obligations” when caring for patients with SARS (severe acute respiratory syndrome), Ebola, and other
diseases with a significant risk of transmission and a significant mortality rate has been controversial, and
professional codes and medical association pronouncements have varied.51 One of the strongest statements of
physician duty appeared in the previously mentioned original 1847 Code of Medical Ethics of the American
Medical Association (AMA): “when pestilence prevails, it is their [physicians’] duty to face the danger, and to
continue their labours for the alleviation of the suffering, even at the jeopardy of their own lives.”52 This
statement was retained in subsequent versions of the AMA code until the 1950s, when the statement was
eliminated, perhaps in part because of a false sense of the permanent conquest of dangerous contagious diseases.
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We usually cannot resolve controversies about duty in face of risk without determining the level of risk—in
terms of both the probability and the seriousness of harm—that professionals are expected to assume and setting
a threshold beyond which the level of risk is so high that it renders action optional rather than obligatory. The
profound difficulty of drawing this line should help us appreciate why some medical associations have urged
their members to be courageous and treat patients with potentially lethal infectious diseases, while other
associations have advised their members that treatment is optional in many circumstances.53 Still others have
taken the view that both virtue and obligation converge to the conclusion that health care professionals should
set aside self-interest, within limits, and that the health care professions should take actions to ensure appropriate
care.54
Confusion occasionally arises about such matters because of the indeterminate boundaries of what is required in
the common morality, what is or should be required in professional communities, and what is a matter of moral
character beyond the requirements of moral obligations. In many cases it is doubtful that health care
professionals fail to discharge moral obligations when they fall short of the highest standards in the profession.
MORAL EXCELLENCE
Aristotelian ethical theory closely connects moral excellence to moral character, moral virtues, and moral ideals.
Aristotle succinctly presents this idea: “A truly good and intelligent person … from his resources at any time
will do the finest actions he can, just as a good general will make the best use of his forces in war, and a good
shoemaker will produce the finest shoe he can from the hides given him, and similarly for all other craftsmen.”55
This passage captures the demanding nature of Aristotle’s theory by contrast to ethical theories that focus largely
or entirely on the moral minimum of obligations.
The value of this vision of excellence is highlighted by John Rawls, in conjunction with what he calls the
“Aristotelian principle”:
The excellences are a condition of human flourishing; they are goods from everyone’s point of view.
These facts relate them to the conditions of self-respect, and account for their connection with our
confidence in our own value. … [T]he virtues are [moral] excellences. … The lack of them will tend
to undermine both our self-esteem and the esteem that our associates have for us.56
We now draw on this general background in Aristotelian theory and on our prior analysis of moral ideals and
supererogation for an account of moral excellence.
The Idea of Moral Excellence
We begin with four considerations that motivate us to examine moral excellence. First, we hope to overcome an
undue imbalance in contemporary ethical theory and bioethics that results from focusing narrowly on the moral
minimum of obligations while ignoring supererogation and moral ideals.57 This concentration dilutes the moral
life, including our expectations for ourselves, our close associates, and health professionals. If we expect only
the moral minimum of obligation, we may lose an ennobling sense of moral excellence. A second and related
motivation is our hope to overcome a suppressed skepticism in contemporary ethical theory concerning high
ideals in the moral life. Some influential writers note that high moral ideals must compete with other goals and
responsibilities in life, and consequently that these ideals can lead persons to neglect other matters worthy of
attention, including personal projects, family relationships, friendships, and experiences that broaden outlooks.58
A third motivation concerns what we call in Chapter 9 the criterion of comprehensiveness in an ethical theory.
Recognizing the value of moral excellence allows us to incorporate a broad range of moral virtues and forms of
supererogation beyond the obligations, rights, and virtues that comprise ordinary morality. Fourth, a model of
moral excellence merits pursuit because it indicates what is worthy of aspiration. Morally exemplary lives
provide ideals that help guide and inspire us to higher goals and morally better lives.
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Aristotelian Ideals of Moral Character
Aristotle maintained that we acquire virtues much as we do skills such as carpentry, playing a musical
instrument, and cooking.59 Both moral and nonmoral skills require training and practice. Obligations play a less
central role in his account. Consider, for example, a person who undertakes to expose scientific fraud in an
academic institution. It is easy to frame this objective as a matter of obligation, especially if the institution has a
policy on fraud. However, suppose this person’s correct reports of fraud to superiors are ignored, and eventually
her job is in jeopardy and her family receives threats. At some point, she has fulfilled her obligations and is not
morally required to pursue the matter further. However, if she does persist, her continued pursuit would be
praiseworthy, and her efforts to bring about institutional reform could even reach heroic dimensions. Aristotelian
theory could and should frame this situation in terms of the person’s level of commitment, the perseverance and
endurance shown, the resourcefulness and discernment in marshalling evidence, and the courage as well as the
decency and diplomacy displayed in confronting superiors.
An analogy to education illustrates why setting goals beyond the moral minimum is important, especially when
discussing moral character. Most of us are trained to aspire to an ideal of education. We are taught to prepare
ourselves as best we can. No educational aspirations are too high unless they exceed our abilities and cannot be
attained. If we perform at a level below our educational potential, we may consider our achievement a matter of
disappointment and regret even if we obtain a university degree. As we fulfill our aspirations, we sometimes
expand our goals beyond what we had originally planned. We think of getting another degree, learning another
language, or reading widely beyond our specialized training. However, we do not say at this point that we have
an obligation to achieve at the highest possible level we can achieve.
The Aristotelian model suggests that moral character and moral achievement are functions of self-cultivation
and aspiration. Goals of moral excellence can and should enlarge as moral development progresses. Each
individual should seek to reach a level as elevated as his or her ability permits, not as a matter of obligation but
of aspiration. Just as persons vary in the quality of their performances in athletics and medical practice, so too in
the moral life some persons are more capable than others and deserve more acknowledgment, praise, and
admiration. Some persons are sufficiently advanced morally that they exceed what persons less well developed
are able to achieve.
Wherever a person is on the continuum of moral development, there will be a goal of excellence that exceeds
what he or she has already achieved. This potential to revise our aspirations is centrally important in the moral
life. Consider a clinical investigator who uses human subjects in research but who asks only, “What am I
obligated to do to protect human subjects?” This investigator’s presumption is that once this question has been
addressed by reference to a checklist of obligations (for example, government regulations), he or she can
ethically proceed with the research. By contrast, in the model we are proposing, this approach is only the starting
point. The most important question is, “How could I conduct this research to maximally protect and minimally
inconvenience subjects, commensurate with achieving the objectives of the research?” Evading this question
indicates that one is morally less committed than one could and probably should be.
The Aristotelian model we have sketched does not expect perfection, only that persons strive toward perfection.
This goal might seem impractical, but moral ideals truly can function as practical instruments. As our ideals,
they motivate us and set out a path that we can climb in stages, with a renewable sense of progress and
achievement.
Exceptional Moral Excellence: Saints, Heroes, and Others
Extraordinary persons often function as models of excellence whose examples we aspire to follow. Among the
many models, the moral hero and the moral saint are the most celebrated.
The term saint has a long history in religious traditions where a person is recognized for exceptional holiness,
but, like hero, the term saint has a secular moral use where a person is recognized for exceptional action or
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virtue. Excellence in other-directedness, altruism, and benevolence are prominent features of the moral saint.60
Saints do their duty and realize moral ideals where most people would fail to do so, and saintliness requires
regular fulfillment of duty and realization of ideals over time. It also demands consistency and constancy. We
likely cannot make an adequate or final judgment about a person’s moral saintliness until the record is complete.
By contrast, a person may become a moral hero through a single exceptional action, such as accepting
extraordinary risk while discharging duty or realizing ideals. The hero resists fear and the desire for self-
preservation in undertaking risky actions that most people would avoid, but the hero also may lack the constancy
over a lifetime that distinguishes the saint.
Many who serve as moral models or as persons from whom we draw moral inspiration are not so advanced
morally that they qualify as saints or heroes. We learn about good moral character from persons with a limited
repertoire of exceptional virtues, such as conscientious health professionals. Consider, for example, John
Berger’s biography of English physician John Sassall (the pseudonym Berger used for physician John Eskell),
who chose to practice medicine in a poverty-ridden, culturally deprived country village in a remote region of
northern England. Under the influence of works by Joseph Conrad, Sassall chose this village from an “ideal of
service” that reached beyond “the average petty life of self-seeking advancement.” Sassall was aware that he
would have almost no social life and that the villagers had few resources to pay him, to develop their
community, and to attract better medicine, but he focused on their needs rather than his. Progressively, Sassall
grew morally as he interacted with members of the community. He developed a deep understanding of, and
profound respect for, the villagers. He became a person of exceptional caring, devotion, discernment,
conscientiousness, and patience when taking care of the villagers. His moral character deepened year after year.
People in the community, in turn, trusted him under adverse and personally difficult circumstances.61
From exemplary lives such as that of John Sassall and from our previous analysis, we can extract four criteria of
moral excellence.62 First, Sassall is faithful to a worthy moral ideal that he keeps constantly before him in
making judgments and performing actions. The ideal is deeply devoted service to a poor and needy community.
Second, he has a motivational structure that conforms closely to our earlier description of the motivational
patterns of virtuous persons who are prepared to forgo certain advantages for themselves in the service of a
moral ideal. Third, he has an exceptional moral character; that is, he possesses moral virtues that dispose him to
perform supererogatory actions of a high order and quality.63 Fourth, he is a person of integrity—both moral
integrity and personal integrity—and thus is not overwhelmed by distracting conflicts, self-interest, or personal
projects in making judgments and performing actions.
These four conditions are jointly sufficient conditions of moral excellence. They are also relevant, but not
sufficient, conditions of both moral saintliness and moral heroism. John Sassall does not face extremely difficult
tasks, a high level of risk, or deep adversity (although he faces some adversity including his bi-polar condition),
and these are typically the sorts of conditions that contribute to making a person a saint or a hero. Exceptional as
he is, Sassall is neither a saint nor a hero. To achieve this elevated status, he would have to satisfy additional
conditions.
Much admired (though sometimes controversial) examples of moral saints acting from a diverse array of
religious commitments are Mahatma Gandhi, Florence Nightingale, Mother Teresa, the 14th Dalai Lama
(religious name: Tenzin Gyatso), and Albert Schweitzer. Many examples of moral saints are also found in
secular contexts where persons are dedicated to lives of service to the poor and downtrodden. Clear examples
are persons motivated to take exceptional risks to rescue strangers.64 Examples of prominent moral heroes
include soldiers, political prisoners, and ambassadors who take substantial risks to save endangered persons by
acts such as falling on hand grenades to spare comrades and resisting political tyrants.
Scientists and physicians who experiment on themselves to generate knowledge that may benefit others may be
heroes. There are many examples: Daniel Carrion injected blood into his arm from a patient with verruga
peruana (an unusual disease marked by many vascular eruptions of the skin and mucous membranes as well as
fever and severe rheumatic pains), only to discover that it had given him a fatal disease (Oroya fever). Werner
Forssman performed the first heart catheterization on himself, walking to the radiological room with the catheter
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sticking into his heart.65 Daniel Zagury injected himself with an experimental AIDS vaccine, maintaining that
his act was “the only ethical line of conduct.”66
A person can qualify as a moral hero or a moral saint only if he or she meets some combination of the previously
listed four conditions of moral excellence. It is too demanding to say that a person must satisfy all four
conditions to qualify as a moral hero, but a person must satisfy all four to qualify as a moral saint. This appraisal
does not imply that moral saints are more valued or more admirable than moral heroes. We are merely proposing
conditions of moral excellence that are more stringent for moral saints than for moral heroes.67
To pursue and test this analysis, consider two additional cases.68 First, reflect on physician David Hilfiker’s Not
All of Us Are Saints, which offers an instructive model of very exceptional but not quite saintly or heroic
conduct in his efforts to practice “poverty medicine” in Washington, DC.69 His decision to leave a rural medical
practice in the Midwest to provide medical care to the very poor, including the homeless, reflected both an
ambition and a felt obligation. Many health problems he encountered stemmed from an unjust social system, in
which his patients had limited access to health care and to other basic social goods that contribute to health. He
experienced severe frustration as he encountered major social and institutional barriers to providing poverty
medicine, and his patients were often difficult and uncooperative. His frustrations generated stress, depression,
and hopelessness, along with vacillating feelings and attitudes including anger, pain, impatience, and guilt.
Exhausted by his sense of endless needs and personal limitations, his wellspring of compassion failed to respond
one day as he thought it should: “Like those whom on another day I would criticize harshly, I harden myself to
the plight of a homeless man and leave him to the inconsistent mercies of the city police and ambulance system.
Numbness and cynicism, I suspect, are more often the products of frustrated compassion than of evil intentions.”
Hilfiker declared that he is “anything but a saint.” He considered the label “saint” to be inappropriate for people,
like himself, who have a safety net to protect them. Blaming himself for “selfishness,” he redoubled his efforts,
but recognized a “gap between who I am and who I would like to be,” and he considered that gap “too great to
overcome.” He abandoned “in frustration the attempt to be Mother Teresa,” observing that “there are few Mother
Teresas, few Dorothy Days who can give everything to the poor with a radiant joy.” Hilfiker did consider many
of the people with whom he worked day after day as heroes, in the sense that they “struggle against all odds and
survive; people who have been given less than nothing, yet find ways to give.”
Second, in What Really Matters: Living a Moral Life Amidst Uncertainty and Danger, psychiatrist and
anthropologist Arthur Kleinman presents half-a-dozen real-life stories about people who, as the book’s subtitle
suggests, attempt to live morally in the context of unpredictability and hazard.70 A story that provided the
impetus for his book portrays a woman he names Idi Bosquet-Remarque, a French American who for more than
fifteen years was a field representative for several different international aid agencies and foundations, mainly in
sub-Saharan Africa. Her humanitarian assistance, carried out almost anonymously, involved working with
vulnerable refugees and displaced women and children as well as with the various professionals, public officials,
and others who interacted with them. Kleinman presents her as a “moral exemplar,” who expressed “our finest
impulse to acknowledge the suffering of others and to devote our lives and careers to making a difference
(practically and ethically) in their lives, even if that difference must be limited and transient.”
At times Bosquet-Remarque was dismayed by various failures, including her own mistakes. She despaired about
the value of her work given the overwhelming odds against the people she sought to help, and she recognized
some truth in several criticisms of her humanitarian assistance. Faced with daunting obstacles, she persisted
because of her deep commitment but eventually experienced physical and emotional burnout, numbness, and
demoralization. Nevertheless, she returned to the field because of her deep commitment to her work. Bosquet-
Remarque recognized that her motives might be mixed. In addition to her altruism and compassion, she also
could have been working out family guilt or seeking to liberate her soul. Despite the ever-present risk of serious
injury and even death from violence, she was uncomfortable with the image of the humanitarian worker as
“hero.”
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After Bosquet-Remarque’s death in an automobile accident, Kleinman informed her family that he wanted to tell
her story. Her mother requested that her daughter not be identified by name: “That way, you will honor what she
believed in. Not saints or heroes, but ordinary nameless people doing what they feel they must do, even in
extraordinary situations. As a family, we believe in this too.”
These observations about ordinary persons who act in extraordinary ways are also relevant to what has been
called moral heroism in living organ and tissue donation—a topic to which we now turn.
Living Organ Donation
In light of our moral account thus far, how should we assess a person’s offer to donate a kidney to a friend or a
stranger?
Health care professionals frequently function as moral gatekeepers to determine who may undertake living
donation of organs and tissues for transplantation. Blood donation raises few questions, but in cases of bone
marrow donation and the donation of kidneys or portions of livers or lungs, health care professionals must
consider whether, when, and from whom to invite, encourage, accept, and effectuate donation. Living organ
donation raises challenging ethical issues because the transplant team subjects a healthy person to a variably
risky surgical procedure, with no medical benefit to him or her. It is therefore appropriate for transplant teams to
probe prospective donors’ competence to make such decisions and their understanding, voluntariness, and
motives.
Historically, transplant teams were suspicious of living, genetically unrelated donors—particularly of strangers
and mere acquaintances but, for a long time, even of emotionally related donors such as spouses and friends.
This suspicion had several sources, including concerns about donors’ motives and worries about their
competence to decide, understanding of the risks, and voluntariness in reaching their decisions. This suspicion
increased in cases of nondirected donation, that is, donation not to a particular known individual, but to anyone
in need. Such putatively altruistic decisions to donate seemed to require heightened scrutiny. However, in
contrast to some professionals’ attitudes,71 a majority of the public in the United States believes that the gift of a
kidney to a stranger is reasonable and proper and that, in general, the transplant team should accept it.72 A key
reason is that the offer to donate a kidney whether by a friend, an acquaintance, or a stranger typically does not
involve such high risks that serious questions should be triggered about the donor’s competence, understanding,
voluntariness, or motivation.73
Transplant teams can and should decline some heroic offers of organs for moral reasons, even when the donors
are competent, their decisions informed and voluntary, and their moral excellence beyond question. For instance,
transplant teams have good grounds to decline a mother’s offer to donate her heart to save her dying child,
because the donation would involve others in directly causing her death. A troublesome case arose when an
imprisoned, thirty-eight-year-old father who had already lost one of his kidneys wanted to donate his remaining
kidney to his sixteen-year-old daughter whose body had already rejected one kidney transplant.74 The family
insisted that medical professionals and ethics committees had no right to evaluate, let alone reject, the father’s
act of donation. However, questions arose about the voluntariness of the father’s offer (in part because he was in
prison), about the risks to him (many patients without kidneys do not thrive on dialysis), about the probable
success of the transplant (because of his daughter’s problems with her first transplant), and about the costs to the
prison system (approximately $40,000 to $50,000 a year for dialysis for the father if he donated the remaining
kidney).
We propose that society and health care professionals start with the presumption that living organ donation is
praiseworthy but optional. Transplant teams need to subject their criteria for selecting and accepting living
donors to public scrutiny to ensure that the teams do not inappropriately use their own values about sacrifice,
risk, and the like, as the basis for their judgments.75 Policies and practices of encouraging prospective living
donors are ethically acceptable as long as they do not turn into undue influence or coercion. For instance, it is
ethically acceptable to remove financial disincentives for potential donors, such as the costs of post-operative
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care, expenses associated with travel and accommodations, and the loss of wages while recovering from
donation. It is also ethically acceptable to provide a life insurance policy to reduce risks to the family of the
living donor.76 In the final analysis, live organ donors may not rise to the level of heroes, depending on the risks
involved, but many embody a moral excellence that merits society’s praise, as well as acceptance by transplant
teams in accord with defensible criteria. (In Chapter 9, in each major section, we analyze from several
perspectives the case of a father who is reluctant, at least partly because of a lack of courage, to donate a kidney
to his dying daughter.)
CONCLUSION
In this chapter we have moved to a moral territory distinct from the principles, rules, obligations, and rights
treated in Chapter 1. We have rendered the two domains consistent without assigning priority to one over the
other. We have discussed how standards of virtue and character are closely connected to other moral norms, in
particular to moral ideals and aspirations of moral excellence that enrich the rights, principles, and rules
discussed in Chapter 1. The one domain is not inferior to or derivative from the other, and there is reason to
believe that these categories all have a significant place in the common morality.
Still other domains of the moral life of great importance in biomedical ethics remain unaddressed. In Chapter 3
we turn to the chief domain not yet analyzed: moral status.
NOTES
1. 1. For relevant literature on the subjects discussed in Chapter 2 and in the last section of Chapter 9, see
Stephen Darwall, ed., Virtue Ethics (Oxford: Blackwell, 2003); Roger Crisp and Michael Slote, eds.,
Virtue Ethics (Oxford: Oxford University Press, 1997); Roger Crisp, ed., How Should One Live? Essays
on the Virtues (Oxford: Oxford University Press, 1996); and Daniel Statman, ed., Virtue Ethics: A Critical
Reader (Washington, DC: Georgetown University Press, 1997). Many constructive discussions of virtue
theory are indebted to Aristotle. For a range of treatments, see Julia Annas, Intelligent Virtue (New York:
Oxford University Press, 2011) and Annas, “Applying Virtue to Ethics,” Journal of Applied Philosophy 32
(2015): 1–14; Christine Swanton, Virtue Ethics: A Pluralistic View (New York: Oxford University Press,
2003); Nancy Sherman, The Fabric of Character: Aristotle’s Theory of Virtue (Oxford: Clarendon Press,
1989); Alasdair MacIntyre, After Virtue: A Study in Moral Theory, 3rd ed. (Notre Dame, IN: University of
Notre Dame Press, 2007) and MacIntyre, Dependent Rational Animals: Why Human Beings Need the
Virtues (Chicago: Open Court, 1999); Timothy Chappell, ed., Values and Virtues: Aristotelianism in
Contemporary Ethics (Oxford: Clarendon Press, 2006); and Robert Merrihew Adams, A Theory of Virtue:
Excellence in Being for the Good (Oxford: Clarendon Press, 2006), and Adams, “A Theory of Virtue:
Response to Critics,” Philosophical Studies 148 (2010): 159–65.
2. 2. Jeremy Bentham, Deontology or the Science of Morality (Chestnut Hill, MA: Adamant Media, 2005;
reprinted in the Elibron Classics Series of the 1834 edition, originally published in London by Longman et
al., 1834), p. 196.
3. 3. This sense of “virtue” is intentionally broad. We do not require, as did Aristotle, that virtue involve
habituation rather than a natural character trait. See Nicomachean Ethics, trans. Terence Irwin
(Indianapolis, IN: Hackett, 1985), 1103a18–19. Nor do we follow St. Thomas Aquinas (relying on a
formulation by Peter Lombard), who additionally held that virtue is a good quality of mind by which we
live rightly and therefore cannot be put to bad use. See Treatise on the Virtues (from Summa Theologiae,
I–II), Question 55, Arts. 3–4. We treat problems of the definition of “virtue” in more detail in Chapter 9.
4. 4. This definition is the primary use reported in the Oxford English Dictionary (OED). It is defended
philosophically by Alan Gewirth, “Rights and Virtues,” Review of Metaphysics 38 (1985): 751; and
Richard B. Brandt, “The Structure of Virtue,” Midwest Studies in Philosophy 13 (1988): 76. See also the
consequentialist account in Julia Driver, Uneasy Virtue (Cambridge: Cambridge University Press, 2001),
esp. chap. 4, and Driver, “Response to my Critics,” Utilitas 16 (2004): 33–41. Edmund Pincoffs presents a
definition of virtue in terms of desirable dispositional qualities of persons, in Quandaries and Virtues:
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Against Reductivism in Ethics (Lawrence: University Press of Kansas, 1986), pp. 9, 73–100. See also
MacIntyre, After Virtue, chaps. 10–18; and Raanan Gillon, “Ethics Needs Principles,” Journal of Medical
Ethics 29 (2003): 307–12, esp. 309.
5. 5. See the pursuit of this Aristotelian theme in Annas, Intelligent Virtue, chap. 5. Elizabeth Anscombe’s
“Modern Moral Philosophy” (Philosophy 33 [1958]: 1–19) is the classic mid-twentieth-century paper on
the importance for ethics of categories such as character, virtue, the emotions, and Aristotelian ethics, by
contrast to moral theories based on moral law, duty, and principles of obligation.
6. 6. This analysis of practices is influenced by Alasdair MacIntyre, After Virtue, esp. chap. 14; and Dorothy
Emmet, Rules, Roles, and Relations (New York: St. Martin’s, 1966). See also Justin Oakley and Dean
Cocking, Virtue Ethics and Professional Roles (Cambridge: Cambridge University Press, 2001); Oakley,
“Virtue Ethics and Bioethics,” in The Cambridge Companion to Virtue Ethics, ed. Daniel C. Russell
(Cambridge: Cambridge University Press, 2013), pp. 197–220; and Tom L. Beauchamp, “Virtue Ethics
and Conflict of Interest,” in The Future of Bioethics: International Dialogues, ed. Akira Akabayashi
(Oxford: Oxford University Press, 2014), pp. 688–92.
7. 7. A somewhat similar thesis is defended, in dissimilar ways, in Edmund D. Pellegrino, “Toward a Virtue-
Based Normative Ethics for the Health Professions,” Kennedy Institute Ethics Journal 5 (1995): 253–77.
See also John Cottingham, “Medicine, Virtues and Consequences,” in Human Lives: Critical Essays on
Consequentialist Bioethics, ed. David S. Oderberg (New York: Macmillan, 1997); Alan E. Armstrong,
Nursing Ethics: A Virtue-Based Approach (New York: Palgrave Macmillan, 2007); and Jennifer Radden
and John Z. Sadler, The Virtuous Psychiatrist: Character Ethics in Psychiatric Practice (New York:
Oxford University Press, 2010).
8. 8. Charles L. Bosk, Forgive and Remember: Managing Medical Failure, 2nd ed. (Chicago: University of
Chicago Press, 2003). In addition to the three types of error we mention, Bosk recognizes a fourth type:
“quasi-normative errors,” based on the attending’s special protocols. In the Preface to the second edition,
he notes that his original book did not stress as much as it should have the problems that were created
when normative and quasi-normative breaches were treated in a unitary fashion (p. xxi).
9. 9. Thomas Percival, Medical Ethics; or a Code of Institutes and Precepts, Adapted to the Professional
Conduct of Physicians and Surgeons (Manchester, UK: S. Russell, 1803), pp. 165–66. This book formed
the substantive basis of the first American Medical Association code in 1847.
10. 10. For this shift, see Gerald R. Winslow, “From Loyalty to Advocacy: A New Metaphor for Nursing,”
Hastings Center Report 14 (June 1984): 32–40; and Helga Kuhse, Caring: Nurses, Women and Ethics
(Oxford, UK: Blackwell, 1997), esp. chaps. 1, 2, and 9.
11. 11. See the virtue-based approach to nursing ethics in Armstrong, Nursing Ethics: A Virtue-Based
Approach.
12. 12. Contrast Virginia Held’s argument for a sharp distinction between the ethics of care and virtue ethics
on the grounds that the former focuses on relationships and the latter on individuals’ dispositions: The
Ethics of Care: Personal, Political, and Global (New York: Oxford University Press, 2006). We are
skeptical of her argument, and of the similar view developed by Nel Noddings in “Care Ethics and Virtue
Ethics,” in The Routledge Companion to Virtue Ethics, ed., Lorraine Besser-Jones and Michael Slote
(London: Routledge, 2015), pp. 401–14. Drawing on related themes, Ruth Groenhout challenges the
standard taxonomies that lump a feminist ethic of care together with virtue ethics (developed from a
nonfeminist history); see her “Virtue and a Feminist Ethic of Care,” in Virtues and Their Vices, ed. Kevin
Timpe and Craig A. Boyd (Oxford: Oxford University Press, 2014), pp. 481–501. For an argument closer
to ours, see Raja Halwani, “Care Ethics and Virtue Ethics,” Hypatia 18 (2003): 161–92.
13. 13. Carol Gilligan, In a Different Voice (Cambridge, MA: Harvard University Press, 1982), esp. p. 21. See
also her “Mapping the Moral Domain: New Images of Self in Relationship,” Cross Currents 39 (Spring
1989): 50–63.
14. 14. Gilligan and others deny that the two distinct voices correlate strictly with gender. See Gilligan and
Susan Pollak, “The Vulnerable and Invulnerable Physician,” in Mapping the Moral Domain, ed. C.
Gilligan, J. Ward, and J. Taylor (Cambridge, MA: Harvard University Press, 1988), pp. 245–62.
15. 15. See Gilligan and G. Wiggins, “The Origins of Morality in Early Childhood Relationships,” in The
Emergence of Morality in Young Children, ed. J. Kagan and S. Lamm (Chicago: University of Chicago
Press, 1988). See also Margaret Olivia Little, “Care: From Theory to Orientation and Back,” Journal of
Medicine and Philosophy 23 (1998): 190–209.
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16. 16. Our formulation of these criticisms is influenced by Alisa L. Carse, “The ‘Voice of Care’: Implications
for Bioethical Education,” Journal of Medicine and Philosophy 16 (1991): 5–28, esp. 8–17. For
assessment of such criticisms, see Abraham Rudnick, “A Meta-Ethical Critique of Care Ethics,”
Theoretical Medicine 22 (2001): 505–17.
17. 17. Alisa L. Carse, “Impartial Principle and Moral Context: Securing a Place for the Particular in Ethical
Theory,” Journal of Medicine and Philosophy 23 (1998): 153–69.
18. 18. See Christine Grady and Anthony S. Fauci, “The Role of the Virtuous Investigator in Protecting
Human Research Subjects,” Perspectives in Biology and Medicine 59 (2016): 122–31; Nel Noddings,
Caring: A Feminine Approach to Ethics and Moral Education, 2nd ed. (Berkeley: University of California
Press, 2003), and the evaluation of Noddings’s work in Halwani, “Care Ethics and Virtue Ethics,” esp. pp.
162ff.
19. 19. See Nancy Sherman, The Fabric of Character, pp. 13–55; and Martha Nussbaum, Love’s Knowledge
(Oxford: Oxford University Press, 1990). On “attention” in medical care, see Margaret E. Mohrmann,
Attending Children: A Doctor’s Education (Washington, DC: Georgetown University Press, 2005).
20. 20. Carse, “The ‘Voice of Care,’” p. 17.
21. 21. Other virtues are similarly important. We treat several later in this chapter and in Chapter 9. On the
historical role of a somewhat different collection of central virtues in medical ethics and their connection
to vices, especially since the eighteenth century, see Frank A. Chervenak and Laurence B. McCullough,
“The Moral Foundation of Medical Leadership: The Professional Virtues of the Physician as Fiduciary of
the Patient,” American Journal of Obstetrics and Gynecology 184 (2001): 875–80.
22. 22. Edmund D. Pellegrino, “Toward a Virtue-Based Normative Ethics,” p. 269. Compassion is often
regarded as one of the major marks of an exemplary health care professional. See Helen Meldrum,
Characteristics of Compassion: Portraits of Exemplary Physicians (Sudbury, MA; Jones and Bartlett,
2010).
23. 23. See Lawrence Blum, “Compassion,” in Explaining Emotions, ed. Amélie Oksenberg Rorty (Berkeley:
University of California Press, 1980); and David Hume, A Dissertation on the Passions, ed. Tom L.
Beauchamp (Oxford: Clarendon Press, 2007), Sect. 3, §§ 4–5.
24. 24. Martha Nussbaum, Upheavals of Thought: The Intelligence of Emotions (Cambridge: Cambridge
University Press, 2001), p. 302. Part II of this book is devoted to compassion.
25. 25. See Jodi Halpern, From Detached Concern to Empathy: Humanizing Medical Practice (New York:
Oxford University Press, 2001). For a variety of largely positive essays on empathy, see Howard Spiro et
al., eds., Empathy and the Practice of Medicine (New Haven, CT: Yale University Press, 1993); and Ellen
Singer More and Maureen A. Milligan, eds., The Empathic Practitioner: Empathy, Gender, and Medicine
(New Brunswick, NJ: Rutgers University Press, 1994). A valuable set of philosophical and psychological
perspectives on empathy appears in Amy Coplan and Peter Goldie, eds., Empathy: Philosophical and
Psychological Perspectives (Oxford: Oxford University Press, 2011). Jean Decety, ed., Empathy: From
Bench to Bedside (Cambridge, MA: MIT Press, 2012) includes several essays in Part VI on “Empathy in
Clinical Practice.” For dangers of an overemphasis on empathy in medicine, see Jane Mcnaughton, “The
Art of Medicine: The Dangerous Practice of Empathy,” Lancet 373 (2009): 1940–1941. Paul Bloom offers
a sustained psychological argument against empathy in favor of “rational compassion” in health care, and
many other areas, in his Against Empathy: The Case for Rational Compassion (New York: Ecco Press of
HarperCollins, 2016). Some commentators on his thesis recognize the legitimacy of his concerns, for
instance, about empathy in health care, but call for a more nuanced perspective and greater appreciation of
the value of empathy. See the discussion in response to his essay entitled “Against Empathy” in a Forum
in the Boston Review, September 10, 2014, available at http://bostonreview.net/forum/paul-bloom-against-
empathy (accessed July 22, 2018). Much in this debate hinges on different interpretations of the concept,
criteria, and descriptions of empathy.
26. 26. David Hume, A Treatise of Human Nature, ed. David Fate Norton and Mary Norton (Oxford:
Clarendon Press, 2007), 3.3.1.7.
27. 27. Baruch Brody, “Case No. 25. ‘Who Is the Patient, Anyway’: The Difficulties of Compassion,” in Life
and Death Decision Making (New York: Oxford University Press, 1988), pp. 185–88.
28. 28. Aristotle, Nicomachean Ethics, trans. Terence Irwin, 2nd ed. (Indianapolis: Hackett, 2000), 1106b15–
29, 1141a15–1144b17.
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29. 29. Annette Baier, “Trust, Suffering, and the Aesculapian Virtues,” in Working Virtue: Virtue Ethics and
Contemporary Moral Problems, ed. Rebecca L. Walker and Philip J. Ivanhoe (Oxford: Clarendon Press,
2007), p. 137.
30. 30. See Annette Baier’s “Trust and Antitrust” and two later essays on trust in her Moral Prejudices
(Cambridge, MA: Harvard University Press, 1994); Nancy N. Potter, How Can I Be Trusted: A Virtue
Theory of Trustworthiness (Lanham, MD: Rowman & Littlefield, 2002); Philip Pettit, “The Cunning of
Trust,” Philosophy & Public Affairs 24 (1995): 202–25; and Pellegrino and Thomasma, The Virtues in
Medical Practice, chap. 5.
31. 31. Aristotle, Eudemian Ethics, 1242b23–1243a13, in The Complete Works of Aristotle, ed. Jonathan
Barnes (Princeton, NJ: Princeton University Press, 1984).
32. 32. For discussions of the erosion of trust in medicine, see Robert J. Blendon, John M. Benson, and
Joachim O. Hero, “Public Trust in Physicians—U.S. Medicine in International Perspective” (a project
studying 29 industrialized countries sponsored by the Robert Wood Johnson Foundation), New England
Journal of Medicine 371 (2014): 1570–72; David A. Axelrod and Susan Dorr Goold, “Maintaining Trust
in the Surgeon-Patient Relationship: Challenges for the New Millennium,” Archives of Surgery 135
(January 2000), available at https://jamanetwork.com/journals/jamasurgery/fullarticle/390488 (accessed
March 17, 2018); David Mechanic, “Public Trust and Initiatives for New Health Care Partnerships,”
Milbank Quarterly 76 (1998): 281–302; Pellegrino and Thomasma in The Virtues in Medical Practice, pp.
71–77; and Mark A. Hall, “The Ethics and Empirics of Trust,” in The Ethics of Managed Care:
Professional Integrity and Patient Rights, ed. W. B. Bondeson and J. W. Jones (Dordrecht, Netherlands:
Kluwer, 2002), pp. 109–26. Broader explorations of trustworthiness, trust, and distrust appear in Russell
Hardin’s Trust and Trustworthiness, Russell Sage Foundation Series on Trust, vol. 4 (New York: Russell
Sage Foundation Publications, 2004). See further Onora O’Neill’s proposals to restore trust in medical and
other contexts where mistrust results from factors such as bureaucratic structures of accountability,
excessive transparency, and public culture: A Question of Trust (Cambridge: Cambridge University Press,
2002) and Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2003).
33. 33. Brody, Life and Death Decision Making, p. 35. On the interpretation of integrity as a virtue, see
Damian Cox, Marguerite La Caze, and Michael Levine, “Integrity,” The Stanford Encyclopedia of
Philosophy (Spring 2017 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/spr2017/entries/integrity/ (accessed March 27, 2018).
34. 34. On the connection of, and the distinction between, autonomy and integrity, see Carolyn McLeod,
“How to Distinguish Autonomy from Integrity,” Canadian Journal of Philosophy 35 (2005): 107–33.
35. 35. On integrity as a virtue in the medical professions, see Edmund D. Pellegrino, “Codes, Virtue, and
Professionalism,” in Methods of Medical Ethics, ed. Jeremy Sugarman and Daniel P. Sulmasy, revised 2nd
ed. (Washington, DC: Georgetown University Press, 2010), pp. 91–107, esp. 94; and Michael Wreen,
“Medical Futility and Physician Discretion,” Journal of Medical Ethics 30 (2004): 275–78.
36. 36. For useful discussions of this question in nursing, see Martin Benjamin and Joy Curtis, Ethics in
Nursing: Cases, Principles, and Reasoning, 4th ed. (New York: Oxford University Press, 2010), pp. 122–
26; and Betty J. Winslow and Gerald Winslow, “Integrity and Compromise in Nursing Ethics,” Journal of
Medicine and Philosophy 16 (1991): 307–23. A wide-ranging discussion is found in Martin Benjamin,
Splitting the Difference: Compromise and Integrity in Ethics and Politics (Lawrence: University Press of
Kansas, 1990).
37. 37. For a historically grounded critique of such conceptions and a defense of conscience as a virtue, see
Douglas C. Langston, Conscience and Other Virtues: From Bonaventure to MacIntyre (University Park:
Pennsylvania State University Press, 2001). For another historical perspective, see Richard Sorabji, Moral
Conscience Through the Ages: Fifth Century BCE to the Present (Chicago: University of Chicago Press,
2014).
38. 38. Bernard Williams, “A Critique of Utilitarianism,” in J. J. C. Smart and Williams, Utilitarianism: For
and Against (Cambridge: Cambridge University Press, 1973), pp. 97–98.
39. 39. We here draw from two sources: Hannah Arendt, Crises of the Republic (New York: Harcourt, Brace,
Jovanovich, 1972), p. 62; and John Stuart Mill, Utilitarianism, chap. 3, pp. 228–29, and On Liberty, chap.
3, p. 263, in Collected Works of John Stuart Mill, vols. 10, 18 (Toronto, Canada: University of Toronto
Press, 1969, 1977).
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40. 40. Carl H. Fellner, “Organ Donation: For Whose Sake?” Annals of Internal Medicine 79 (October 1973):
591.
41. 41. See James F. Childress, “Appeals to Conscience,” Ethics 89 (1979): 315–35; Larry May, “On
Conscience,” American Philosophical Quarterly 20 (1983): 57–67; and C. D. Broad, “Conscience and
Conscientious Action,” in Moral Concepts, ed. Joel Feinberg (Oxford: Oxford University Press, 1970), pp.
74–79. See also Daniel P. Sulmasy, “What Is Conscience and Why Is Respect for It So Important?”
Theoretical Medicine and Bioethics 29 (2008): 135–49; and Damian Cox, Marguerite La Caze, and
Michael Levine, “Integrity,” The Stanford Encyclopedia of Philosophy (Spring 2017 Edition), ed. Edward
N. Zalta, available at https://plato.stanford.edu/archives/spr2017/entries/integrity/ (accessed February 25,
2018).
42. 42. Douglas B. White and Baruch Brody, “Would Accommodating Some Conscientious Objections by
Physicians Promote Quality in Medical Care?” JAMA 305 (May 4, 2011): 1804–5.
43. 43. For several models, see Rebecca Dresser, “Professionals, Conformity, and Conscience,” Hastings
Center Report 35 (November–December 2005): 9–10; Mark R. Wicclair, Conscientious Objection in
Health Care: An Ethical Analysis (Cambridge: Cambridge University Press, 2011); Alta R. Charo, “The
Celestial Fire of Conscience—Refusing to Deliver Medical Care,” New England Journal of Medicine 352
(2005): 2471–73; and Elizabeth Fenton and Loren Lomasky, “Dispensing with Liberty: Conscientious
Refusal and the ‘Morning-After Pill,’” Journal of Medicine and Philosophy 30 (2005): 579–92.
44. 44. See Holly Fernandez Lynch, Conflicts of Conscience: An Institutional Compromise (Cambridge, MA:
MIT Press, 2008).
45. 45. The rest of the physicians are opposed or undecided. Farr A. Curlin et al., “Religion, Conscience, and
Controversial Clinical Practices,” New England Journal of Medicine 356 (February 8, 2007): 593–600.
46. 46. Dan W. Brock offers a similar framework for ethical analysis in what he calls the “conventional
compromise” in “Conscientious Refusal by Physicians and Pharmacists: Who Is Obligated to Do What,
and Why?” Theoretical Medicine and Bioethics 29 (2008): 187–200. For the legal framework in the
United States, see Elizabeth Sepper, “Conscientious Refusals of Care,” in The Oxford Handbook of U.S.
Health Law, ed. I. Glenn Cohen, Allison Hoffman, and William M. Sage (New York: Oxford University
Press, 2017), chap. 16.
47. 47. Our analysis is indebted to David Heyd, Supererogation: Its Status in Ethical Theory (Cambridge:
Cambridge University Press, 1982); Heyd, “Tact: Sense, Sensitivity, and Virtue,” Inquiry 38 (1995): 217–
31; Heyd, “Obligation and Supererogation,” Encyclopedia of Bioethics, 3rd ed. (New York: Thomson
Gale, 2004), vol. 4, pp. 1915–20; and Heyd, “Supererogation,” The Stanford Encyclopedia of Philosophy
(Spring 2016 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/spr2016/entries/supererogation (accessed March 27, 2018). We are also
indebted to J. O. Urmson, “Saints and Heroes,” Essays in Moral Philosophy, ed. A. I. Melden (Seattle:
University of Washington Press, 1958), pp. 198–216; John Rawls, A Theory of Justice (Cambridge, MA:
Harvard University Press, 1971; rev. ed. 1999), pp. 116–17, 438–39, 479–85 (1999: 100–101, 385–86,
420–25); Joel Feinberg, “Supererogation and Rules,” Ethics 71 (1961); and Gregory Mellema, Beyond the
Call of Duty: Supererogation, Obligation, and Offence (Albany: State University of New York Press,
1991). For central connections between virtue and supererogation, see Roger Crisp, “Supererogation and
Virtue,” in Oxford Studies in Normative Ethics (vol. 3), ed. Mark Timmons (Oxford: Oxford University
Press, 2013), article 1.
48. 48. Albert Camus, The Plague, trans. Stuart Gilbert (New York: Knopf, 1988), p. 278. Italics added.
49. 49. The formulation in this sentence relies in part on Rawls, A Theory of Justice, p. 117 (1999 edition, p.
100).
50. 50. Feinberg, “Supererogation and Rules,” 397.
51. 51. See Dena Hsin-Chen and Darryl Macer, “Heroes of SARS: Professional Roles and Ethics of Health
Care Workers,” Journal of Infection 49 (2004): 210–15; Joseph J. Fins, “Distinguishing Professionalism
and Heroism When Disaster Strikes: Reflections on 9/11, Ebola, and Other Emergencies,” Cambridge
Quarterly of Healthcare Ethics 24 (October 2015): 373–84; Angus Dawson, “Professional, Civic, and
Personal Obligations in Public Health Emergency Planning and Response,” in Emergency Ethics: Public
Health Preparedness and Response, ed. Bruce Jennings, John D. Arras, Drue H. Barrett, and Barbara A.
Ellis (New York: Oxford University Press, 2016), pp. 186–219. Early discussions of HIV/AIDS, when
there were major concerns about transmission in the clinical setting, frequently addressed the clinician’s
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responsibility to treat. Examples include Bernard Lo, “Obligations to Care for Persons with Human
Immunodeficiency Virus,” Issues in Law & Medicine 4 (1988): 367–81; Doran Smolkin, “HIV Infection,
Risk Taking, and the Duty to Treat,” Journal of Medicine and Philosophy 22 (1997): 55–74; and John
Arras, “The Fragile Web of Responsibility: AIDS and the Duty to Treat,” Hastings Center Report 18
(April–May 1988): S10–20.
52. 52. American Medical Association (AMA), Code of Medical Ethics of the American Medical Association,
adopted May 1847 (Philadelphia: T.K. and P.G. Collins, 1848), available at
http://ethics.iit.edu/ecodes/sites/default/files/Americaan%20Medical%20Association%20Code%20of%20
Medical%20Ethics%20%281847%29 (accessed March 17, 2018).
53. 53. See American Medical Association, Council on Ethical and Judicial Affairs, “Ethical Issues Involved
in the Growing AIDS Crisis,” Journal of the American Medical Association 259 (March 4, 1988): 1360–
61.
54. 54. Health and Public Policy Committee, American College of Physicians and Infectious Diseases Society
of America, “The Acquired Immunodeficiency Syndrome (AIDS) and Infection with the Human
Immunodeficiency Virus (HIV),” Annals of Internal Medicine 108 (1988): 460–61. See further Edmund
D. Pellegrino, “Character, Virtue, and Self-Interest in the Ethics of the Professions,” Journal of
Contemporary Health Law and Policy 5 (1989): 53–73, esp. 70–71.
55. 55. Aristotle, Nicomachean Ethics, trans. Irwin, 1101a1–7.
56. 56. Rawls, A Theory of Justice, pp. 443–45 (1999 edition: 389–91). On the Aristotelian principle, see pp.
424–33 (1999 edition: 372–80).
57. 57. Urmson recognized this problem in “Saints and Heroes,” pp. 206, 214. Imbalance is found in forms of
utilitarianism that make strong demands of obligation. However, see the attempt to revise
consequentialism to bring it in line with common moral intuitions in Douglas W. Portman, “Position-
Relative Consequentialism, Agent-Centered Options, and Supererogation,” Ethics 113 (2003): 303–32.
58. 58. A reasonable skepticism is evident in some influential philosophical works such as those of Susan
Wolf (in the article cited below), Philippa Foot, Bernard Williams, and Thomas Nagel.
59. 59. Aristotle, Nicomachean Ethics, trans. Irwin, 1103a32–1103b1.
60. 60. Edith Wyschogrod offers a definition of a “saintly life” as “one in which compassion for the other,
irrespective of cost to the saint, is the primary trait.” Wyschogrod, Saints and Postmodernism: Revisioning
Moral Philosophy (Chicago: University of Chicago Press, 1990), pp. xiii, xxii, et passim.
61. 61. John Berger (and Jean Mohr, photographer), A Fortunate Man: The Story of a Country Doctor
(London: Allen Lane, the Penguin Press, 1967), esp. pp. 48, 74, 82ff, 93ff, 123–25, 135. Lawrence Blum
pointed us to this book and influenced our perspective on it. Sassall’s wife played a critical role in running
his medical practice and helping him deal with his manic-depressive illness; she receives little attention in
the book, which is, however, dedicated to her. She died in 1981, and he committed suicide the next year.
See Roger Jones, “Review: A Fortunate Man,” British Journal of General Practice, February 9, 2015,
available at http://bjgplife.com/2015/02/09/review-a-fortunate-man/ (accessed July 20, 2018). See also
Gavin Francis, “John Berger’s A Fortunate Man: A Masterpiece of Witness,” Guardian, February 7, 2015,
available at https://www.theguardian.com/books/2015/feb/07/john-sassall-country-doctor-a-fortunate-
man-john-berger-jean-mohr (accessed, July 20, 2018).
62. 62. Our conditions of moral excellence are indebted to Lawrence Blum, “Moral Exemplars,” Midwest
Studies in Philosophy 13 (1988): 204. See also Blum’s “Community and Virtue,” in How Should One
Live?: Essays on the Virtues, ed. Crisp.
63. 63. Our second and third conditions are influenced by the characterization of a saint in Susan Wolf’s
“Moral Saints,” Journal of Philosophy 79 (1982): 419–39. For a pertinent critique of Wolf’s interpretation,
see Robert Merrihew Adams, “Saints,” Journal of Philosophy 81 (1984), reprinted in Adams, The Virtue
of Faith and Other Essays in Philosophical Theology (New York: Oxford University Press, 1987), pp.
164–73.
64. 64. For an examination of some twenty-first-century figures who lived under extreme conditions with
exceptional moral commitment, see Larissa MacFarquhar, Strangers Drowning: Impossible Idealism,
Drastic Choices, and the Urge to Help (New York: Penguin Books, 2016).
65. 65. Jay Katz, ed., Experimentation with Human Beings (New York: Russell Sage Foundation, 1972), pp.
136–40; Lawrence K. Altman, Who Goes First? The Story of Self-Experimentation in Medicine, 2nd ed.,
with a new preface (Berkeley: University of California Press, 1998), pp. 1–5, 39–50, et passim.
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66. 66. Philip J. Hilts, “French Doctor Testing AIDS Vaccine on Self,” Washington Post, March 10, 1987, p.
A7; Altman, Who Goes First?, pp. 26–28.
67. 67. We will not consider whether these conditions point to a still higher form of moral excellence: the
combination of saint and hero in one person. There have been such extraordinary persons, and we could
make a case that some of these extraordinary figures are more excellent than others. But at this level of
moral exemplariness, such fine distinctions serve no purpose.
68. 68. These cases can be read as suggesting that many people who are commonly called heroes or saints are
not very different from good and decent but morally ordinary people. This theory is not explored here
(except implicitly in our account of the continuum from ordinary morality to supererogation), but it is
examined in Andrew Michael Flescher, Heroes, Saints, and Ordinary Morality (Washington: Georgetown
University Press, 2003). Flescher provides historical examples of people commonly regarded as saints or
heroes.
69. 69. David Hilfiker, Not All of Us Are Saints: A Doctor’s Journey with the Poor (New York: Hill & Wang,
1994). The summaries and quotations that follow come from this book. His earlier book, Healing the
Wounds: A Physician Looks at His Work (New York: Pantheon, 1985) focuses on his previous experiences
as a family physician in rural Minnesota. The personal problems he (and some others we discuss) faced
underline a critical point in this chapter: difficulties that can arise in balancing a commitment to a moral
ideal or moral excellence with personal needs.
70. 70. Arthur Kleinman, What Really Matters: Living a Moral Life Amidst Uncertainty and Danger (New
York: Oxford University Press, 2006), chap. 3. The quotations are from this work.
71. 71. For the attitudes of nephrologists, transplant nephrologists, transplant surgeons, and the like, see Carol
L. Beasley, Alan R. Hull, and J. Thomas Rosenthal, “Living Kidney Donation: A Survey of Professional
Attitudes and Practices,” American Journal of Kidney Diseases 30 (October 1997): 549–57; and Reginald
Y. Gohh, Paul E. Morrissey, Peter N. Madras, et al., “Controversies in Organ Donation: The Altruistic
Living Donor,” Nephrology Dialysis Transplantation 16 (2001): 619–21, available at
https://academic.oup.com/ndt/article/16/3/619/1823109 (accessed February 26, 2018). Even though strong
support now exists for living kidney donation, actual medical practice is not uniformly in agreement.
72. 72. See Aaron Spital and Max Spital, “Living Kidney Donation: Attitudes Outside the Transplant Center,”
Archives of Internal Medicine 148 (May 1988): 1077–80; Aaron Spital, “Public Attitudes toward Kidney
Donation by Friends and Altruistic Strangers in the United States,” Transplantation 71 (2001): 1061–64.
73. 73. From 1996 to 2005, as living kidney donation overall doubled in the United States, the annual
percentage of genetically unrelated kidney donors (excluding spouses) rose from 5.9% to 22%. 2006
Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of
Transplant Recipients: Transplant Data 1996–2005 (Rockville, MD: Health Resources and Services
Administration, Healthcare Systems Bureau, Division of Transplantation, 2006). During the years 2001–3,
acts of living organ donation outnumbered acts of deceased organ donation, but living organ donation,
which had increased for the preceding five years, declined steadily after 2004 for both kidneys and livers.
See A. S. Klein, E. E. Messersmith, L. E. Ratner, et al., “Organ Donation and Utilization in the United
States, 1999–2008,” American Journal of Transplantation 10 (Part 2) (2010): 973–86. This slide has
continued. See James R. Rodrigue, Jesse D. Schold, and Didier A. Mandelbrot, “The Decline in Living
Kidney Donation in the United States: Random Variation or Cause for Concern?” Transplantation 96
(2013): 767–73.
74. 74. Evelyn Nieves, “Girl Awaits Father’s 2nd Kidney, and Decision by Medical Ethicists,” New York
Times, December 5, 1999, pp. A1, A11.
75. 75. See Linda Wright, Karen Faith, Robert Richardson, and David Grant, “Ethical Guidelines for the
Evaluation of Living Organ Donors,” Canadian Journal of Surgery 47 (December 2004): 408–12. See
also A. Tong, J. R. Chapman, G. Wong, et al., “Living Kidney Donor Assessment: Challenges,
Uncertainties and Controversies among Transplant Nephrologists and Surgeons,” American Journal of
Transplantation 13 (2013): 2912–23. For further examination of ethical issues in living organ donation,
see James F. Childress and Cathryn T. Liverman, eds., Organ Donation: Opportunities for Action
(Washington, DC: National Academies Press, 2006), chap. 9.
76. 76. A vigorous debate continues about whether it would be ethically acceptable to add financial incentives
for living organ donation, beyond removing financial disincentives. Such incentives would change some
donors’ motivations for donation, which already may include factors in addition to their altruism.
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3
Moral Status
The previous two chapters concentrated on moral agents and their obligations, rights, and virtues. Little
consideration has been given to whom the obligations are owed, why we have obligations to some beings and
not others, and which beings have rights and which do not. This chapter is devoted to these questions of moral
status, also referred to as moral standing and moral considerability.1
The terms status and standing have been transported to ethics from the notion of legal standing. In a weak sense,
“moral status” refers to a position, grade, or rank of moral importance. In a strong sense, “moral status” means to
have rights or the functional equivalent of rights. Any being has moral status if moral agents have moral
obligations to it, the being has welfare interests, and the moral obligations owed to it are based on its interests.2
THE PROBLEM OF MORAL STATUS
The problem of moral status begins with questions about which entities, individuals, and groups are protected by
moral norms. For example, what should we say about human embryonic stem cells? Human eggs? Embryos?
Fetuses? Newborn infants? Anencephalic babies? The mentally disabled? Persons who are unable to distinguish
right from wrong? The seriously demented? Those incurring a permanent loss of consciousness? The brain-
dead? Cadavers? Nonhuman animals used in medical research? A biologically modified animal designed to
carry a human fetus to term? Chimeric animals, transgenic animals, and other new life forms created in
research? Do the members of each of these groups deserve moral protections or have moral rights? If so, do they
deserve the same complement of protections and rights afforded to competent adult humans?3
Throughout much of human history, collections of human beings such as racial groupings, tribes, enemies in
war, and effectively all nonhuman animals have been treated as less than persons. Accordingly, they were
assigned either no moral status or a low-level of moral status and were accorded no moral rights (historically,
slaves in many societies) or fewer or weaker rights (historically, women in many societies).4 Still common,
though controversial, presumptions in medicine and biomedical ethics indicate that some groups have no moral
rights (e.g., animals used in biomedical research) and that some groups have fewer or weaker rights (e.g., human
embryos used in research).
Surrogate decision making also raises questions about moral status. When a once competent person is deemed
incompetent and needs a surrogate decision maker, the person does not lose all moral protections and forms of
moral respect. Many obligations to these individuals continue, and some new obligations may arise.
Nonetheless, the recognition of a surrogate as the rightful decision maker entails that the incompetent individual
has lost some rights of decision making, and in this respect the individual’s moral status is lower than it
previously was. Any “decision” that such an individual might make (e.g., to leave a nursing home) does not have
the same moral authority it had prior to the determination of incompetency. At least some of our obligations to
the person have shifted and some have ceased. For example, we may no longer be obligated to obtain first-party
informed consent from this individual, in which case consent must be obtained from a surrogate decision maker.
The criterion of mental incompetence is one among many commonly employed in assessing moral status and in
determining rights and obligations.
Similar questions arise about what we owe to small children when we involve them in pediatric research that
holds out no promise of direct benefit for child subjects because the goal of the research is to develop new
treatments for children in the future. We often assert that we owe vulnerable parties more, not fewer, protections.
Yet children involved in research that is not intended to benefit them have sometimes been treated as if they have
a diminished moral status.
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Another example of problems of moral status comes from cases of pregnant women who are brain-dead but
whose biological capacities are artificially maintained for several weeks to enable the fetus they are carrying to
be born.5 Ordinarily, we do not think of dead people as having a moral status that affords them a right to be kept
biologically functioning. Moreover, maintaining a brain-dead pregnant woman’s body against her formerly
stated wishes implies that she has been categorized as having a lower moral status than other corpses because
her body is subjected to extreme measures—sometimes for months—to benefit the fetus, the woman’s partner,
or the next of kin in the family.6
The central ethical question is whether a fetus has rights stronger than those of a brain-dead pregnant woman
whose advance directive expresses her wish to stop all technology at the point of brain death. Beliefs about the
moral status of the fetus are powerful motivating considerations in some cases, but the fetus is not the only
individual with moral status and rights at the point of the pregnant woman’s brain death. Discussion continues
about whether a brain-dead woman in this situation has rights that can legitimately be asserted in her advance
directive and whether maintaining her body to sustain the pregnancy violates those rights.7
Finally, views of and practices toward the many nonhuman animals that we use in biomedical research raise
moral status questions. At times we appear to treat them primarily as utilitarian means to the ends of science,
facilitated by the decisions of some person or group considered to be their stewards. The implication is that
laboratory animals are not morally protected against invasive, painful, and harmful forms of experimentation,
and perhaps that they lack moral status altogether. An outright denial of moral status is implausible in light of
the fact that virtually every nation and major scientific association has guidelines to alleviate, diminish, or
otherwise limit what can be done to animals in biomedical research. It is today generally accepted that animals
used in research have some level of moral status, though it often remains unclear which moral considerations
warrant this judgment.
At the root of these questions is a rich body of theoretical issues and practical problems about moral status.
THEORIES OF MORAL STATUS
To have moral status is to deserve at least some of the protections afforded by moral norms, including the
principles, rules, obligations, and rights discussed in Chapter 1. These protections are afforded only to entities
that can be morally wronged by actions. Here is a simple example: We wrong a person by intentionally infecting
his or her computer with a virus, but we do not wrong the computer itself even if we damage it irreparably and
render it nonfunctional. It is possible to have duties with regard to some entities, such as someone’s computer,
without having duties to those entities.8 By contrast, if we deliberately infect a person’s dog with a harmful
virus, we have wronged the dog’s owner and also the dog. Why are persons and dogs direct moral objects and
thereby distinguished from computers and houses, which are merely indirect moral objects? The answer is that
direct moral objects count in their own right, are morally more than mere means to the production of benefits for
others, and have basic interests,9 whereas indirect moral objects do not. But how is the line to be drawn between
what counts in its own right and what does not?
The mainstream approach has been to ask whether a being is the kind of entity to which moral principles or other
moral categories can and should be applied and, if so, based on which properties of the being. In some theories,
one and only one property confers moral status. For example, some say that this property is human dignity—an
inexact notion that moral theory has done little to clarify. Others say that another property or perhaps several
properties are needed to acquire moral status, such as sentience, rationality, or moral agency.
We argue in this chapter that the properties identified in the five most prominent theories of moral status will
not, individually, resolve the main issues about moral status, but that collectively these theories provide a good,
although untidy, framework for handling problems of moral status. We begin by looking at each of the five
theories and assessing why each is attractive, yet problematic if taken to be the sole acceptable theory.
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A Theory Based on Human Properties
The first theory can be called the traditional account of moral status. It holds that distinctively human properties,
those of Homo sapiens, confer moral status. Distinctively human properties demarcate that which has moral
value and delineate which beings constitute the moral community. An individual has moral status if and only if
that individual is conceived by human parents—or, alternatively, if and only if it is an organism with a human
genetic code. The following is a concise statement of such a position by two members of the US President’s
Council on Bioethics (2001–2009):
Fertilization produces a new and complete, though immature, human organism. … A human embryo
is … a whole living member of the species Homo sapiens in the earliest stage. … To deny that
embryonic human beings deserve full respect, one must suppose that not every whole living human
being is deserving of full respect. … [Even embryos] are quite unlike cats and dogs. … As humans
they are members of a natural kind—the human species. … Since human beings are intrinsically
valuable and deserving of full moral respect in virtue of what they are, it follows that they are
intrinsically valuable from the point at which they come into being.10
Many find such a theory attractive because it unequivocally covers all human beings and demands that no
human be excluded on the basis of a property such as being a fetus, having brain damage, or having a congenital
anomaly. We expect a moral theory to cover everyone without making arbitrary or rigged exceptions. This
theory meets that standard. The moral status of human infants, mentally disabled humans, and those with a
permanent loss of consciousness (in a persistent vegetative state) is not in doubt or subject to challenge in this
theory. This theory also fits well, intuitively, with the moral belief that all humans have human rights precisely
because they are human.11
Despite its attractive features, this theory is problematic when taken as a general theory that one and only one
“natural kind” deserves moral status. If we were to train nonhuman apes to converse with us and engage in
moral relationships with us, as some believe has already occurred, it would be baseless and prejudicial to say
that they have a lesser status merely because of a biological difference in species. If we were to encounter a
being with properties such as intelligence, memory, and moral capacity, we would frame our moral obligations
toward that being not only or even primarily by asking whether it is or is not biologically human. We would look
to see if such a being has capacities of reasoning and planning, has a conception of itself as a subject of action, is
able to act autonomously, is able to engage in speech, and can make moral judgments. If the individual has one
or more of these properties, its moral status (at some level) is assured, whereas if it has no such properties, its
moral status might be in question, depending on the precise properties it has. Accordingly, human biological
properties are not necessary conditions of moral status.
Using a species criterion as the proper criterion of human properties is also not as clear and determinative as
some adherents of this first theory seem to think. Consider the example of scientific research in which a
monkey-human chimera is created for the purposes of stem-cell research. This research has the objective of
alleviating or curing neurological diseases and injuries. It is conducted by inserting a substantial human cell
contribution into a developing monkey’s brain. Specifically, investigators implant human neural stem cells into a
monkey’s brain to see what the cells do and where they are located.12 The question is whether functional
integration of these neural cells in a nonhuman primate brain would cause a morally significant change in the
mind of the engrafted animal, and, if it so, what the consequences would be for the moral status of the animal
once born. Thus far, no such human-nonhuman chimera has been allowed to progress past early fetal stages, but
such a chimera could be born and might be recognized as possessing a high level of moral status.
There are cells in this chimera that are distinctly human and cells that are distinctly monkey. The monkey’s brain
is developing under the influence of the human cells. Should it be born, it could possibly behave in humanlike
ways. In theory, the larger the proportion of engrafted human cells relative to host cells, the higher the likelihood
of humanlike features or responses. Such a chimera would possess a substantial human biological contribution
and might have capacities for speech and moral behavior, especially if a great ape was the selected nonhuman
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species.13 Transgenic animals, that is, animals that possess and express genes from a different species, present
similar issues. An example is the much-discussed Harvard oncomouse, which has only mouse cells but also has
bits of human DNA and develops human skin cancers.
Related biomedical research involves the insertion of human stem cells into nonhuman animal embryos in the
hope that chimeric animals containing human organs can be born and their organs transplanted into humans.
These scientific studies began when stem-cell biologists successfully used injections of induced pluripotent stem
cells from rats into mouse blastocysts to create mice having a rat rather than mouse pancreas.14 This mouse-
alteration research led scientists to study whether transplantable human organs might be grown in human-animal
chimeras. The goal is to harvest human organs from host pig-humans in the hope that organ transplants can be
made available to the hundreds of thousands of persons on waiting lists for organs around the world.15
The US National Institutes of Health was concerned about these studies because the injected pluripotent human
cells into nonhuman embryos may have the potential to multiply and possibly to causally affect the embryo’s
neural development, which includes the brain, leaving “uncertainty about the effects of human cells on off-target
organs and tissues in the chimeric animals, particularly in the nervous system, [which] raises ethical and animal
welfare concerns.”16 We cannot decide the moral status of chimeric animals merely by the presence of possible
human neural development, but it remains uncertain how best to decide these issues.17
There has been little opposition, other than a few concerns about human safety, to many mixtures of human and
animal tissues and cells in the context of medical care (e.g., transplantation of animal parts or insertion of
animal-derived genes or cells) and biomedical research (e.g., several kinds of insertion of human stem cells into
animals). However, matters may become worrisome if animal-human hybrids are created. In 2004 the US
President’s Council on Bioethics found “especially acute” the ethical concerns raised by the possibility of
mixing human and nonhuman gametes or blastomeres to create a hybrid. It opposed creating animal-human
hybrid embryos by ex vivo fertilization of a human using animal sperm or of an animal egg using human sperm.
One reason is the difficulty society would face in judging both the humanity and the moral status of such an
“ambiguous hybrid entity.”18 These and other developments in research present challenges to the theory that
fixed species boundaries are determinative of moral status.19
This first theory of moral status confronts another problem as well: The commonsense concept of person is, in
ordinary language, functionally identical to the concept of human being, but there is no warrant for the assertion
that only properties distinctive of the human species count toward personhood or that species membership alone
determines moral status. Even if certain properties strongly correlated with membership in the human species
qualify humans for moral status more readily than the members of other species, these properties are only
contingently connected to being human. Such properties could be possessed by members of nonhuman species
or by entities outside the sphere of natural species, such as God, chimeras, robots, and genetically manipulated
species (and biological humans could, in principle, lack these properties).20
Julian Savulescu has proposed a way to resolve moral-status problems about the aforementioned pig-human
chimeras by appeal to person theory:
A chimera is a genetic mix. … It is not a pig with a human pancreas inserted into it—it is a human-
animal chimera. … [I]t is possible that some future chimeras will develop human or human-like
brains . . . having moral relevance. . . . If there is any doubt about the cognitive abilities of this new
life form, we should check the chimera for its functionality. … In the absence of conclusive
evidence, the default position should be that we assign them [these chimeras] high moral status until
further research has confirmed or disproved this. …
Any human-pig chimera should, then, be assessed against the criteria of personhood. … [A]ny such
chimera should be accorded the highest moral status consistent with its likely nature.21
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Savulescu’s attention to the central place of moral status is appropriate, but it is questionable whether criteria of
personhood should govern our assessments of moral status. The concept of and theory of persons is unsuited to
deliver what is required unless it is convincingly argued that the concept of persons is a normative concept that
can adequately resolve moral status questions. The person-theory literature is not intrinsically moral in nature,
though it is also not useless in moral argument.22 However, person theory has not proven to be the key to a
satisfactory model of moral status. Moral status does not require personhood, and personhood does not clearly
entail moral status, depending on what is meant by the rather imprecise notion of a “person.”23
Some people maintain that what it means to be a person is to have some set of human biological properties;
others maintain that personhood is delineated not biologically, but in terms of certain cognitive capacities, moral
capacities, or both. What counts as a person expands or contracts as theorists construct their theories so that
precisely the entities for which they advocate will be judged to be persons and other entities will be judged not
to be persons. In one theory, human embryos are declared persons and the great apes are not, whereas in another
theory the great apes are persons and human embryos are not.
The theory of moral status as grounded in properties of humanity might seem salvageable if we include both
human biological properties and distinctively human psychological properties, that is, properties exhibiting
distinctively human mental functions of awareness, emotion, cognition, motivation, intention, volition, and
action. This broader scope, however, will not rescue the theory. If the theory is that nonhuman animals are not
morally protected in a context of biomedical research because they lack psychological characteristics such as
self-determination, moral motivation, language use, and moral emotions, then consistency in theory requires
stating that humans who lack these characteristics likewise do not qualify for moral protections for the same
reason. For any human psychological property we select, some human beings will lack this characteristic (or at
least lack it to the relevant degree); and frequently some nonhuman animal will possess this characteristic.
Primates, for example, often possess humanlike properties that some humans lack, such as a specific form of
intellectual quickness, the capacity to feel pain, and the ability to enter into meaningful social relationships.
Accordingly, this first theory based on human properties does not by itself qualify as a comprehensive account
of moral status.
Nonetheless, it would be morally perilous to give up the idea that properties of humanity form a basis of moral
status. This position is entrenched in morality and provides the foundation of the claim that all humans have
human rights. Accordingly, the proposition that some set of distinctive human properties is a sufficient, but not
necessary, condition of moral status is an attractive and we think acceptable position.24 However, we leave it an
open question precisely which set of properties counts, and we acknowledge that argument is needed to show
that some properties count whereas others do not. We also acknowledge that it could turn out that the properties
we regard as the most critical human properties are not distinctively human at all.
The acceptance of a criterion of human properties as supplying a sufficient condition of moral status does not
rule out the possibility that properties other than distinctively human ones also constitute sufficient conditions of
moral status. To test this hypothesis, we turn to consideration of the other four theories.
A Theory Based on Cognitive Properties
A second theory of moral status moves beyond biological criteria and species membership to cognitive
properties that are often associated with the properties of being a person. “Cognition” refers to processes of
awareness such as perception, memory, understanding, and thinking. This theory does not assume that only
humans have such properties, although the starting model for these properties is usually the competent human
adult. The theory is centrally that individuals have moral status because they are able to reflect on their lives
through their cognitive capacities and are self-determined by their beliefs in ways that incompetent humans and
many nonhuman animals are not.
Properties found in theories of this second type include (1) self-consciousness (consciousness of oneself as
existing over time, with a past and future); (2) freedom to act and the capacity to engage in purposeful actions;
(3) ability to give and to appreciate reasons for acting; (4) capacity for beliefs, desires, and thoughts; (5) capacity
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to communicate with other persons using a language; and (6) rationality and higher order volition.25 The goal of
theories of this type is to identify a set of cognitive properties possessed by all and only beings having moral
status. We here set aside disputes internal to these theories about precisely which cognitive properties are jointly
necessary and/or sufficient for personhood, and therefore for moral status. To investigate the problems with this
general type of theory, it does not matter for present purposes whether only one or more than one of these
properties must be satisfied.
The model of an autonomous human being, or person, is conceived in many of these theories in terms of
cognitive properties such as those listed in the previous paragraph. The theory that these properties form the
foundation of moral status acknowledges that if a nonhuman animal, a hybrid human, or a brain-damaged human
is in all relevant respects like a cognitively capable human being, then it has a similar (presumably identical)
moral status. A corollary is that if one is not in the relevant respects similar to a cognitively competent human
being, one’s moral status is correspondingly reduced or vacated.
As the number or level of the required cognitive abilities is increased, a reduction will occur in the number of
individuals who satisfy the theory’s conditions, and therefore fewer individuals will qualify for moral status or at
least for elevated moral status. For example, if all six of the previously listed criteria must be satisfied, many
humans would be excluded from elevated moral status. Likewise, if the quality or level of the required cognitive
skills is reduced, the number of individuals who qualify for protection under the theory will presumably
increase. For example, if only understanding and intentional action at a basic level were required, some
nonhuman animals would qualify.
A worrisome feature of this theory is that infants, the senile elderly, persons with a severe mental disability, and
others who are generally regarded as having a secure moral status will lack the cognitive capacities required to
attain moral status. Most nonhuman animals may also lack these cognitive capacities. The level of cognitive
abilities required also may vary from one theory to the next theory. In explicating a Kantian position, Christine
Korsgaard writes, “Human beings are distinguished from animals by the fact that practical reason rather than
instinct is the determinant of our actions.”26 If this criterion of practical reason were the sole criterion of moral
status, then biological “humans” who lack practical rationality would be mere animals (and not even truly
human beings).
An objection to this theory, often directed against theories predicated primarily on human dignity or autonomy,
is “the argument from marginal cases.” This argument maintains that every major cognitive criterion of moral
status (intelligence, agency, self-consciousness, etc.) excludes some humans, including young children and
humans with serious brain damage. These “marginal” cases of cognitive human capacities can be at the same
level of cognitive (and other) capacities as some animals, and therefore to exclude these animals is also to
exclude comparably situated humans. If animals can be justifiably treated as mere means to human ends, then
comparable “marginal” cases of human capacity can also be justifiably treated as mere means to human ends—
for example, by becoming research subjects.27 This position precludes a high level of moral status for many
weak, vulnerable, and incapacitated humans.
This theory therefore does not function, as the first theory does, to ensure that vulnerable human beings will be
morally protected. The more vulnerable individuals are by virtue of cognitive deficiency, the weaker are their
claims for moral protection. The fact that members of the human species typically exhibit higher levels of
cognitive capacities than members of other species does not alleviate this problem. Under this theory, a
nonhuman animal in principle can overtake a human in moral status once the human loses a measure of mental
abilities after a cataclysmic event or a decline of capacity. For example, once a primate training in a language
laboratory exceeds a deteriorating Alzheimer’s patient on the relevant scale of cognitive capacities, the primate
would attain a higher moral status in this type of theory.28
Writers in both science and biomedical ethics often assume that nonhuman animals lack the relevant cognitive
abilities, including self-consciousness (even basic consciousness), autonomy, or rationality, and are therefore not
elevated in status by this theory.29 However, this premise is more assumed than demonstrated. Much has been
demonstrated about cognition in animal minds by ethologists who investigate animal cognition and mental
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properties using evolutionary and comparative studies as well as naturalistic and laboratory techniques of
observation and experimentation.30 Comparative studies of the brain show many relevant similarities between
the human species and various other species. In behavioral studies, some great apes appear to make self-
references or at least to show self-awareness or self-recognition, and many animals learn from the past and use
their knowledge to forge intentional plans of action for hunting, stocking reserve foods, and constructing
dwellings.31 In play and social life, many animals understand assigned functions and either follow designated
roles or decide for themselves what roles to play.32 Moreover, many animals seem to understand and intend in
ways that some incapacitated humans cannot. These are all cognitively significant properties, and therefore, in
this second theory, they are morally significant properties that award a more elevated moral status to nonhuman
animals with the relevant properties than to humans who lack them.
Defenders of this second type of theory need to address how to establish the relevance and importance of the
connection asserted between cognitive properties and moral protections. Why do cognitive properties of
individuals determine anything at all about their moral status? We are not asserting that a theory of moral status
cannot be based on nonmoral properties. It can, but such a theory of moral status must make a connection
between its preferred nonmoral properties and the claim that they confer moral status. Defenders need to explain
why the absence of this property (e.g., self-consciousness) makes a critical moral difference and precisely what
that difference is. If a human fetus or an individual with advanced dementia lacks certain cognitive properties, it
does not follow, without supporting argument, that they lack moral status and associated moral protections.
To conclude this section, this second theory, like the first, fails to establish that cognitive capacity is a necessary
condition of moral status. However, the theory arguably does succeed in showing that some set of cognitive
capacities is a sufficient condition of moral status. Cognitive capacities such as reasoned choice occupy a central
place in what we respect in an individual when we invoke moral principles such as “respect for autonomy.” The
main problem with this second theory is not that it invokes these properties, but that it considers only cognitive
properties and neglects other potentially relevant properties, notably properties on the basis of which individuals
can suffer and enjoy well-being. We will see below in examining the fourth theory of moral status that certain
noncognitive properties are also sufficient for moral status.
A Theory Based on Moral Agency
In a third type of theory, moral status derives from the capacity to act as a moral agent. The category of moral
agency is subject to different interpretations, but, fundamentally, an individual is a moral agent if two conditions
are satisfied: (1) the individual is capable of making moral judgments about the rightness and wrongness of
actions, and (2) the individual has motives that can be judged morally. These are moral-capacity criteria, not
conditions of morally correct action or character. An individual could make immoral judgments and have
immoral motives and still be a moral agent.33
Several theories fall under this general type, some with more stringent conditions of moral agency than the two
just listed. Historically, Immanuel Kant advanced what has become the most influential theory of moral agency.
He concentrated on moral worth, autonomy, and dignity, but some of his formulations suggest that he is also
proposing conditions of moral status. For example, moral autonomy of the will is central to his theory. It occurs
if and only if one knowingly governs oneself in accordance with universally valid moral principles. This
governance gives an individual “an intrinsic worth, i.e., dignity,” and “hence autonomy is the ground of the
dignity of human nature and of every rational creature.”34
Kant and many after him have suggested that capacity for moral agency gives an individual a moral respect and
dignity not possessed by individuals incapable of moral agency—human or nonhuman. This account has a
clearly attractive feature: Being a moral agent is indisputably a sufficient condition of moral status. Moral agents
are the paradigmatic bearers of moral status. They know that we can condemn their motives and actions, blame
them for irresponsible actions, and punish them for immoral behavior.35
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Accordingly, like the first two theories, this third theory supplies a sufficient condition of moral status, and, like
the first two, it fails to identify a necessary condition of moral status. If being a moral agent (or being morally
autonomous) were a necessary condition of moral status, then many humans to whom moral protections are
extended would be stripped of their moral status, as would most and perhaps all nonhuman animals. Many
psychopaths, patients with severe brain damage, patients with advanced dementia, and animal subjects in
research would lack moral status in this theory. Yet individuals in these classes deserve to have their interests
attended to by many parties, including institutions of medical care. The reason for such protections cannot be a
capacity of moral agency, because these individuals have none.
Interpreting the theory of moral agency as a necessary condition of moral status is strongly counterintuitive. A
morally appropriate response to vulnerable parties such as young children, the severely intellectually disabled,
patients with senile dementia, and vulnerable research animals is that they deserve special protection, not that
they merit no protection. Whether these individuals are moral agents is not the primary consideration in
assessing their moral status.
Accordingly, this third theory provides a sufficient condition of moral status but not a necessary one. We have
already seen that there are other ways to acquire moral status, and we will now argue that a fourth theory lends
additional support to this conclusion.
A Theory Based on Sentience
Humans as well as nonhuman animals have properties that are neither cognitive nor moral properties, yet count
toward moral status. These properties include a range of emotional and affective responses, the single most
important being sentience—that is, the capacity for consciousness understood as experience in the form of
feelings. Specifically, sentience is the capacity for sensations, feelings, or other experiences that are agreeable or
disagreeable. Because sentient animals have a subjective quality of life, they have an experiential welfare and
therefore welfare interests.36
A central line of moral argument in this fourth theory is the following: Pain is an evil, pleasure a good. To cause
pain to any entity is to harm it. Many beings can experience pain and suffering, which are bad in themselves and
even worse when experienced over an extended period of time.37 To harm these individuals is to wrong them,
and such harm-causing actions are morally prohibited unless one has moral reasons sufficient to justify them.
Proponents of this fourth theory appropriately claim that having the capacity of sentience is a sufficient
condition of moral status.38 The properties of being able to experience pain and suffering are almost certainly
sufficient to confer some measure of moral status. One of the main objectives of morality is to minimize pain
and suffering and to prevent or limit indifference and antipathy toward those who are experiencing pain and
suffering. We need look no further than ourselves to appreciate this point: Pain is an evil to each of us, and the
intentional infliction of pain is a moral-bearing action from the perspective of anyone so afflicted. What matters,
with respect to pain, is not species membership or the complexity of intellectual or moral capacities. It’s the
pain. From this perspective, all entities that can experience pain and suffering have some level of moral status.
This theory has broad scope. It reaches to vulnerable human populations and to many animals used in
biomedical research. We study animals in biomedical research because of their similarities with humans. The
reason to use animals in research is that they are so similar to humans, and the reason not to use animals in
research is that they are so similar to humans in their experience of pain and suffering. Notably in the case of
primates, their lives are damaged and their suffering often resembles human suffering because they are similar to
us physically, cognitively, and emotionally.
Precisely who or what is covered by this conclusion, and when, is disputed, especially in the large literatures on
animal research, human fetal research, and abortion. If sentience alone confers moral status, a human fetus
acquires moral status no earlier and no later than the point of sentience. Growth to sentience in the sense of a
biological process is gradual over time, but the acquisition of sentience—or the first onset of sentience—is, in
this fourth theory, the point at which moral status is obtained. Some writers argue that development of a
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functioning central nervous system and brain is the proper point of moral status for the human fetus, because it is
the initial biological condition of sentience.39 This approach does not protect human blastocysts or embryos and
has proved to be an uncertain basis on which to build arguments allowing or disallowing abortion, because there
is disagreement about when the brain has developed sufficiently for sentience. However, in this theory a fetus
acquires moral status at some point after several weeks of development, and thus abortions at that point and later
are (prima facie) impermissible.40 We are not, in making these observations, presenting objections to sentience
theory or to any version of it. We are noting only that these problems need to be addressed in a comprehensive
theory of moral status that emphasizes sentience.
Defenders of a sentience theory often quote Jeremy Bentham’s famous statement: “The question is not, Can they
reason? nor, Can they talk? but, Can they suffer?”41 Advocates emphasize that moral claims on behalf of any
individual, human or nonhuman, may have nothing to do with intelligence, capacity for moral judgment, self-
consciousness, rationality, personality, or any other such fact about the individual. The bottom line is that
sentience is a sufficient condition of moral status independent of these other properties of individuals.
The theory that sentience is a sufficient condition of moral status makes more modest claims than the theory that
sentience is a necessary and sufficient condition and thus the only criterion of moral status. The latter theory is
embraced by a few philosophers who hold that properties and capacities other than sentience, such as human
biological life and cognitive and moral capacities, are not defensible bases of moral status.42 Nonsentient beings,
such as computers, robots, and plants (and also nonsentient animals), lack the stuff of moral status precisely
because they have no capacity for pain and suffering; all other beings deserve moral consideration because they
are sentient.
This very strong version of the fourth theory is problematic. The main problem arises from the claim that an
individual lacking the capacity for sentience lacks moral status. On the human side, this theory disallows moral
status for early-stage fetuses as well as for all humans who have irreversibly lost the capacity for sentience, such
as patients with severe brain damage. It is not satisfactory to assert that absence of sentience entails absence of
moral status. Proponents of the sentience theory might seek to defend it in several ways, probably by accepting
another criterion of moral status in addition to that of sentience. This maneuver would give up the claim that
sentience is a necessary and sufficient condition of moral status, which would be to abandon robust theories of
the fourth type.
Another problem with strong versions of the fourth theory is their impracticability. We could not hope to
implement these versions in our treatment of all species whose members are capable of sentience, and we could
not do so without presenting grave danger to human beings. Virtually no one defends the view that we cannot
have public health policies that vigorously control for pests and pestilence by extermination. The most plausible
argument by a sentience theorist who holds the view that sentience is sufficient for moral status is that the theory
grants only some level of moral status to sentient beings.
The most defensible theory of this fourth type holds (1) that not all sentient creatures have the same level of
sentience and (2) that, even among creatures with the same level of sentience, sentience may not have the same
significance because of its interaction with other properties. A few writers believe that there is a gradation of
richness or quality of life, depending on level of consciousness, social relationships, ability to derive pleasure,
creativity, and the like. A continuum of moral status scaled from the autonomous adult human down through the
lowest levels of sentience can, in this way, be layered into sentience theory. Even if many sentient animals have
moral status, it does not follow that humans should be treated no differently than other animals including the
great apes. There may be many good reasons for forms of differential treatment.
In one such theory a human life with the capacity for richness of consciousness has a higher moral status and
value than even a richly flourishing animal life such as that of a dog or a bonobo. This judgment has nothing to
do with species membership, but rather with “the fact that [rich, conscious] human life is more valuable than
animal life” by virtue of capacities such as genuine autonomy. In this theory human life is valuable and has
moral status only under certain conditions of quality of life. Human life, therefore, can lose some of its value and
moral status by degrees as conditions of welfare and richness of experience decrease.43 All such theories have
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problems that need resolution because the moral status of a life and its protections decline by degrees as
conditions of welfare and richness diminish. When loss of capacity occurs, for example, humans and nonhumans
alike will have a reduced moral status, and the most vulnerable individuals will become more susceptible to
abuse or exploitation because of their reduced moral status. No theory that supports this conclusion in general is
morally acceptable.
In light of the several problems surrounding the theory that sentience is both a necessary and sufficient condition
of moral status, we conclude that this fourth theory—like the first three theories—provides a sufficient, but not a
necessary, condition of some level of moral status. This theory needs supplementation by the other theories
previously discussed to provide a comprehensive account of moral status. Sentience theory can be used to
determine which beings have moral status, whereas other theories could help determine the degree of moral
status. Unless augmented, this fourth theory does not determine the precise level of moral status or the proper
scope of moral protections.
A Theory Based on Relationships
A fifth and final theory is based on relational properties. This theory holds that relationships between parties
confer moral status, primarily when relationships establish roles and obligations. An example is the patient-
physician relationship, which is a relationship of medical need and provision of care. Once this relationship is
initiated, the patient gains a right to care from this particular physician lacked by persons who are not the
physician’s patient. The patient does not have this status independent of an established relationship, and the
physician does not have the same obligations to those outside the relationship.
Other examples are found in relationships that do not involve a formal understanding between the parties, such
as bonds with persons with whom we work closely and relationships that involve no mutual understanding
between the parties, such as human initiatives that establish relations with laboratory animals and thereby
change what is owed to these animals. A much-discussed example is the relationship between human personnel
in laboratories and animal subjects who are thoroughly dependent on their caretakers. Here the caretaker role
generates obligations on investigators and other responsible parties.
This fifth theory tries to capture the conditions under which many relationships in research and practice,
especially those involving social interaction and reciprocity, are stronger and more influential than relationships
with strangers and outsiders. One version of this theory depicts the relevant relationships as developing in
diverse ways over time. Alzheimer’s patients and experimental animals, for example, have a history in which the
human moral community has assessed the importance of its relationship to these individuals. In each case we
owe protection and care to those with whom we have established these relationships, and when they are
vulnerable to harm we have special obligations to protect and care for them because of these relationships.44
In some versions of this theory, the human fetus and the newborn baby are examples of those who gradually
come to have a significant moral status through special social relationships. Here is one such account of the
moral status of the human fetus:
The social role in question develops over time, beginning prior to birth. … A matrix of social
interactions between fetus and others is usually present well before parturition. Factors contributing
to this social role include the psychological attachment of parents to the fetus, as well as advances in
obstetric technology that permit monitoring of the health status of the fetus. … The less the degree
to which the fetus can be said to be part of a social matrix, the weaker the argument for regarding
her/him as having the same moral status as persons. Near the borderline of viability, … the fetus
might be regarded as part of a social network to a lesser degree than at term. If so, the degree of
weight that should be given to the fetus’s interests varies, being stronger at term but relatively
weaker when viability is questionable.45
Despite its attractions, this fifth theory cannot do more than account for how moral status and associated
protections are sometimes established. If this theory were taken as the sole basis of moral status, only social
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bonds and special relationships would determine moral status. Critical rights such as the right to life and the
right not to be confined have no force in such a theory unless rights are conferred in a context of relationships.
The theory is unsustainable as an account of moral status if it rejects, neglects, or omits the insights in the
previous four theories, which recognize moral status on the basis of qualities (cognition, sentience, etc.) that can
be acknowledged independently of relationships. For example, in the fourth theory, the property of sentience is
status conferring. When we wrongfully harm a human research subject or a human population through
environmental pollution, it is incorrect to say that the harming is wrong merely because we have an established
laboratory, clinical, or social relationship with either particular individuals or populations. We behave wrongly
because we cause gratuitous and unnecessary risk, pain, or suffering, which would be so whether or not an
established relationship exists.
The problem of moral status is fundamentally about which beings have moral status, and this fifth theory does
not directly address this problem. It rather focuses on the basis on which beings sometimes gain or lose specific
moral rights or generate or discontinue specific moral obligations. Accordingly, this fifth theory does not supply
a necessary condition of moral status, and, in contrast to the other theories we have examined, it also does not
clearly provide a sufficient condition of moral status in many cases of important relationships.46 Many loving
and caring relationships, with various kinds of beings, do not confer moral status on those beings. No matter
how much we love our children’s closest friends or a neighbor’s pet, they do not gain moral status by virtue of
our relationship to them. Nor does the lack of such a relationship indicate a lack of moral status. An individual
still may gain status under criteria drawn from one of the four previous theories (humanity, cognition, moral
agency, and sentience). This approach is the best way to maximally preserve claims of moral status for
individuals no longer capable of having significant interpersonal relationships. They will not lose all moral
status merely because relationships have been lost.
In sum, the fifth theory’s primary contribution is to show that certain relationships account for how many
individuals acquire or lose some moral entitlements and others engender or discontinue obligations. In this way,
the theory helps account for different degrees of moral status, as discussed in the section below on “Degrees of
Moral Status.”
FROM THEORIES TO PRACTICAL GUIDELINES
Each of the five theories examined thus far has acceptable and attractive elements. However, each theory risks
making the mistake of isolating a singular property or type of property—biological species, cognitive capacity,
moral agency, sentience, or special relationships—as the sole or at least the primary criterion of moral status.
Each theory proposes using its preferred property for including certain individuals (those having the property)
and excluding others (those lacking the property). Each theory thereby becomes too narrow to be a general
theory of moral status unless it accepts some criteria in one or more of the other four theories.
From ancient Hellenic times to the present, we have witnessed different motives and theories at work when
groups of people (e.g., slaves and women) have been denied a certain social standing because they lack some
highly valued property that would secure them full moral status. Over time, views about the moral acceptability
of these presumed criteria have changed and have altered beliefs about the moral status of members of these
groups. For example, women and minority groups denied equal moral status later received, in many societies,
the equal status that ought never to have been denied. The worry still today is that some groups, especially
vulnerable groups including some patients and research subjects, still face a discriminatory social situation: They
fail to satisfy criteria of moral status because the dominant criteria have been tailored specifically so that they do
not qualify for full—or perhaps even partial—moral status. Discussion in biomedical ethics has focused
principally on whether the following are vulnerable groups of this description: human embryos, human fetuses,
anencephalic children, human research subjects, animal research subjects, and individuals affected by
unresponsive wakefulness syndrome (or persistent vegetative state).47
The primary norms in each theory—which we hereafter refer to as criteria of moral status (rather than theories
or conditions of moral status)—work well for some problems and circumstances in which decisions must be
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made, but not well for other problems and circumstances.
Appropriation of the Best Criteria from the Five Theories
Ideally, we can adopt the best from each of the five theories and meld these elements into a multicriterial,
coherent account of moral status.48 This strategy will help accommodate the diversity of views about moral
status, will allow a balancing of the interests of different stakeholders such as the interests of scientists in new
knowledge and the interests of research subjects, and will help avoid intractable clashes of rights, such as
conflicts between the rights of scientists to engage in research and the rights of human embryos. We hereafter
assume that, in principle, the ideal of a coherent, multicriterial account of moral status can be satisfied; but a
unified and comprehensive account of moral status is a demanding and ambitious project that we make no claim
to have undertaken in the present chapter.
Degrees of Moral Status
In many accounts of moral status, not all individuals enjoying moral status have it categorically, without
qualification, or fully. In some theories, competent, adult humans have a broader array of rights than other
beings, especially rights of self-determination and liberty, because of their capacities of autonomy and moral
agency. Despite the now common view that many species of animals involved in research have some level of
moral status, it is rare to find a theory of moral status that assigns all animals in research the same degree of
moral status as human persons.49 Even defenders of animal rights generally acknowledge that it is worse to
exterminate a person than to exterminate a rat. Another common view is that frozen human embryos do not have
the same moral status as human persons. But are these claims about higher and lower moral status defensible?
Does a defensible theory recognize degrees of moral status?
We start toward an answer by examining a groundbreaking case in public policy that relies on the idea of
degrees of moral status. This case derives from the history of debate and legislation about human embryo
research in the United Kingdom. The morally contentious issues surrounding this research were first considered
by the Committee of Inquiry into Human Fertilisation and Embryology (the Warnock Committee, 1984)50 and
later debated in Parliament during passage of the Human Fertilisation and Embryology Act of 1990. Regulations
in 2001 set regulatory policy governing the use of embryos in research. These regulations were indebted to a
2000 report by the Chief Medical Officer’s Expert Group.51 According to this report, British policy affirms the
following moral principles as the moral basis of law and regulation regarding the use of embryos in stem-cell
research:
The 1990 Act reflects the majority conclusion of the Warnock Committee. The use of embryos in
research in the UK is currently based on the [following] principles expressed in their Report:
The embryo of the human species has a special status but not the same status as a living child
or adult.
The human embryo is entitled to a measure of respect beyond that accorded to an embryo of
other species.
Such respect is not absolute and may be weighed against the benefits arising from proposed
research.
The embryo of the human species should be afforded some protection in law. …
The Expert Group accepted the ‘balancing’ approach which commended itself to the majority of the
Warnock Committee. On this basis, extending the permitted research uses of embryos appears not to
raise new issues of principle.52
This position is a somewhat vague, but common—and, in this case, a highly influential—expression of an
account of degrees and levels of moral status and concomitant protections.
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The five theories we have addressed can each be interpreted in terms of degrees. For example, in the fourth
theory, based on sentience, moral status is arguably proportional to degree of sentience and perhaps to the
quality and richness of sentient life. Similarly, in the fifth theory, based on relationships, moral status is
expressible in terms of degrees of relationship: Relationships come in different degrees of closeness, and
relations of dependence can be far more significant in some cases than in other cases.
Arguably, all morally relevant properties in each of these theories are degreed. Capacity for language use,
sentience, moral agency, rationality, autonomous decision making, and self-consciousness all come in degrees
and may not be limited to human beings.53 From this perspective, there are higher and lower levels of moral
status, and we can conceive a continuum running from full moral status to no moral status.
But is an account of degrees of moral status superior to an all-or-nothing account of moral status?54 The notion
of a lesser moral status (including the notion of being subhuman or inhuman) has been troublesome throughout
history, and its remnants linger in many cultural practices. Is it, then, best to deny or to affirm that there are
degrees of moral status?
These problems of degrees of moral status should not obscure the fact that all beings with moral status, even
those unambiguously below full moral status, still have some significant moral status. Disagreement is inevitable
regarding whether the concept of degrees is suitable for the analysis of all properties that confer moral status.
For example, disagreement appears in the writings of those having firm commitments to the first theory, based
on properties of humanity. One controversial case involves the potential of a human fetus to become a sentient,
cognitively aware, moral agent. In some theories this potential is not expressible by degrees because full
potential is present from the start of an individual’s life; a human fetus therefore has full moral status at its
origins and throughout its existence. In other theories human fetuses have a lower degree of moral status because
they are only potential persons, not yet actual persons.
In one type of theory, the moral status of human zygotes, embryos, and fetuses increases gradually during
gestation.55 This theory can be developed to make potentiality itself a matter of degree (degree of potentiality).
For example, brain defects in a fetus or infant can affect the potential for cognitive and moral awareness and also
for the relationships that can be formed with others. This theory can also be expressed in terms of different sets
of rights—for instance, pregnant women may have more rights than their fetuses as well as a higher level of
moral status than their fetuses—at least at some stages of fetal development.
A practically oriented theory of moral status will need to determine with precision what an individual’s or a
group’s status is, not merely that the individual or group has some form of status. A comprehensive theory will
explain whether and, if so, how the rank will change as properties that contribute to status are progressively
gained or lost. We ought not to be optimistic that such a theory can be developed to cover all problems of moral
status, but we can hope to achieve a better theory than has thus far been available.
The Connection between Moral Norms and Moral Status
We have distinguished questions about moral status from the questions about the moral norms addressed in
Chapter 1. We will now further develop this distinction. Criteria of moral status are moral norms in the generic
sense of “moral norm.” A moral norm in the generic sense is a (prima facie) standard that has the authority to
judge or direct human belief, reasoning, or behavior. Norms guide, require, or commend. Failure to follow a
norm warrants censure, criticism, disapproval, or some other negative appraisal. Criteria of moral status satisfy
this description. Although not the same type of norm as principles and rules, these criteria are normative
standards.
Criteria of moral status also can be understood in terms of the discussions in Chapter 1 of moral conflict, moral
dilemmas, prima facie norms, and the specification and balancing of norms. Criteria of moral status can and
often do come into conflict. For example, the criterion of sentience (drawn from theory 4) and the criterion of
human species membership (drawn from theory 1) come into conflict in some attempts to determine the moral
status of the early-stage human fetus. The sentience criterion expressed in theory 4 suggests that the fetus gains
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status only at the point of sentience, whereas the criterion of human properties (in theory 1) suggests that moral
status accrues at human biological inception.
Guidelines Governing Moral Status: Putting Specification to Work
Conflicts of theory and interpretation can and should be addressed using the account of specification delineated
in Chapter 1. Norms are specified by narrowing their scope, which allows us to create what we will call
guidelines governing moral status. Others might call them rules instead of guidelines, but in our framework rules
specify principles whereas guidelines specify criteria of moral status. The goal is to extract content from the
criteria found in one or more of the five theories to show how that content can be shaped into increasingly
practical guidelines. We will state these guidelines using the language of a “level of moral status.”
The concept of a level should be interpreted in terms of degrees of moral status. This approach provides for a
continuum of moral status, running from a narrow range of moral protections to a broad range of moral
protections. For example, infants, the mentally handicapped, and many persons who are cognitively incompetent
have some level of moral status, but they do not have the same level of moral status as autonomous persons. For
instance, those who lack substantial cognitive and autonomy capacities will not have various decision-making
rights such as the right to give an informed consent that are enjoyed by those who are substantially autonomous,
but they will still have rights to life and to health care. To say that they have a lower moral status is not to
demean or degrade them. It is to recognize that they do not have the same entitlements that others have. But their
vulnerabilities also may confer entitlements on them that others do not have such as various entitlements to
medical care and special education.
To show how norms can be made progressively practical, we will now treat illustrative specifications that
qualify as guidelines. We are not recommending the five guidelines below. Our goal is merely to clarify the
nature, basis, and moral significance of these guidelines and to show how they are formed using the method of
specification.
Consider first a circumstance in which the criterion “All living human beings have some level of moral status”
comes into conflict with the criterion “All sentient beings have some level of moral status.” We start with two
possible specifications (guidelines 1 and 2 below) that engage the criteria put forward in theories 1 (the criterion
of human life) and 4 (the criterion of sentience):
Guideline 1. All human beings who are sentient or have the biological potential for sentience have
some level of moral status; all human beings who are not sentient and have no biological potential
for sentience have no moral status.
This specification allows for additional specification applicable to particular groups such as brain-dead
individuals, anencephalic individuals (those without a cerebrum and cerebellum, which are essential to
significant levels of thinking and behavior), and individuals who have sufficient brain damage that they are not
sentient and have no potential for sentience. Guideline 1 says that individuals in such groups have no moral
status. By contrast, the guideline assigns some level of moral status to all healthy human embryos and fetuses
when they are either sentient or have the potential to be sentient. Guideline 1 cannot be used to support human
embryonic stem-cell research or abortions and so might not support the transplantation of human fetal stem cells
into a Parkinson’s patient. Guideline 1 stands opposed to these practices, though it too can be further specified.
A different, and obviously competitive, guideline that is achieved through specification is this:
Guideline 2. All human beings who are sentient have some level of moral status; all human beings
who are not sentient, including those with only a potential for sentience, have no moral status.
This second guideline has profoundly important moral implications for whether embryos and early-stage fetuses
have moral status and therefore implications for moral debates about human embryonic stem-cell research and
early-stage abortions. It states that although life prior to sentience is morally unprotected, the fetus is protected
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against abortion and research interventions once it becomes sentient.56 Unlike guideline 1, guideline 2 would
allow the transplantation (after appropriate research) of human fetal stem cells into a Parkinson’s patient.
Clarifying the exact implications of this second guideline would require further specification(s). In the case of
abortion in particular, even when a fetus is sentient its continued existence could threaten the life or health of the
pregnant woman. On one possible line of further specification, sentient fetuses possess the same rights possessed
by all sentient human beings, and an abortion is a maleficent act as objectionable as the killing of an innocent
person. On a different line of specification, sentient fetuses have a diminished set of rights if their presence
threatens the life of a pregnant woman. In the abstract form here presented, guideline 2 is only a first step in
grappling with problems governing several classes of individuals.
A third possible guideline reached by specification appeals both to theory 4 (sentience) and to theory 2
(cognitive capacity):
Guideline 3. All sentient beings have some level of moral status; the level is elevated in accordance
with the level of sentience and the level of cognitive complexity.
According to this guideline, the more sentient the individual and the richer the cognitive or mental life of the
individual, the higher the individual’s level of moral status. The capacities of creatures for an array of valuable
experiences vary. As a result, not all lives are lived at the same high level of perception, cognition, appreciation,
esthetic experience, and the like. The issue is not whether a life has value; it is about different levels of value
because of differences in sentience and the quality of mental life. This guideline is a first step toward working
out the common intuition in research involving animals that great apes deserve stronger protections than pigs,
which deserve more protection than rats, and so forth. However, this guideline might not turn out to support
many common intuitions about the mental capacities of species; for example, pigs could turn out to have a richer
mental life than dogs or baboons and therefore a higher moral status than members of these species.57
Depending on how this guideline is further specified, it might or might not support use of a ready-to-transplant
pig heart valve into a human heart. The level of the pig’s capacities of sentience and cognition might make a
critical moral difference in whether the valve can be harvested from pigs in the first place. Under this guideline,
questions of the comparative value of the human life saved and the sacrificed pig’s life can only be decided by
inquiry into the levels of their sentience and cognition.
Consider now a fourth guideline, this one a specification of the criterion of moral agency (theory 3) in conflict
with the criterion of human-species properties (theory 1):
Guideline 4. All human beings capable of moral agency have equal basic rights; all sentient human
beings and nonhuman animals not capable of moral agency have a diminished set of rights.
This guideline sharply elevates the status of moral agents while giving a lesser status to all other sentient
creatures. Defense of this guideline would likely require an account of equal basic rights and of which rights are
held and not held by those incapable of moral agency (a subject partially treated in Chapter 4).
This guideline is, from one perspective, obviously correct and noncontroversial: Competent individuals capable
of moral agency have a set of rights—for example, decision-making rights—not held by individuals who are not
capable of moral agency, whether the latter are human or nonhuman. Far more controversial and difficult to
handle by specification is the underlying premise that human individuals who lack capacity for moral agency
thereby have a reduced moral status. Proponents of theory 1 presumably would altogether reject this premise in
their specifications. Categorization of reduced moral status could affect many decisions in bioethics such as how
to rank order who has primacy in the order of who receives organ transplants (under conditions of scarcity of
organs). A lingering question would be whether individuals with no capacity for moral agency should be
accorded a reduced moral status that ranks them sufficiently low that they are not competitive for
transplantation.
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Consider, as a final example, a possible guideline that engages the demands of the fifth theory (of status through
relationships) and the fourth theory (of sentience). This specification brings the two criteria to bear on the
circumstance of laboratory animals. The following formulation assumes the moral proposition that the
“communal relationship” between persons in charge of a laboratory and the animals in it is morally significant:
Guideline 5. All sentient laboratory animals have a level of moral status that affords them some
protections against being caused pain, distress, or suffering; as the likelihood or the magnitude of
potential pain, distress, or suffering increases, the level of moral status increases and protections
must be increased accordingly.
This guideline is the first step in making precise the idea that laboratory animals who benefit human
communities gain a higher moral status than would the same animal having only sentience. Laboratory rats, for
example, gain more status than rats living in the woods or in the attics of hospitals. Human initiatives that
establish relations with animals change what is owed to them, and they thereby acquire a higher status than do
wild animals of the same species. The main conditions of interest are the vulnerability and dependence
engendered in animals when humans establish relations with them in laboratories. The more vulnerable research
makes the animals to pain and suffering, the more obligations of animal care and protection increase.
This guideline has sometimes been expressed in terms of human stewardship over the animals—that is, the
careful and responsible oversight and protection of the conditions of an animal entrusted to one’s care. However,
a better model—because of its closeness to moral status criteria—is grounded in obligations of reciprocity and
nonmaleficence: Animal research subjects gain a higher moral status because of the use made of their bodies and
the harm or risk of harm in the research.
These five guidelines might be presented in such abstract and indeterminate formulations that they will seem
doubtfully practicable. If their abstractness cannot be further reduced, this outcome would be unfortunate
because practicability is an important standard for evaluation of all accounts in practical ethics. In principle
guidelines can be progressively specified to the point of practicability, just as moral principles can (as
demonstrated in Chapter 1). In addition, constrained balancing (also analyzed in Chapter 1) will often have a
role in determining justifiable courses of action.
THE MORAL SIGNIFICANCE OF MORAL STATUS
Some writers challenge the need for the category of moral status. They argue that moral theory can and should
move directly to guidance about how individuals ought to be treated or to which moral virtues should be
enacted. Some philosophers argue that moral status accounts of the sort examined thus far offer a superficially
attractive but overly simplistic picture of how we “expand the circle of our concern” beyond autonomous adult
humans to human fetuses, brain-damaged humans, laboratory animals, and the like. They argue that such
theories blind us to the range of features that are morally relevant in decision making. If a creature has a property
such as sentience, this fact does not tell us how we should treat or otherwise respond to members of the class of
sentient beings; nor does it give us an account of moral priorities. Accordingly, we do not need the concept and
theory of moral status and would be better off without it.58
This account proposes that we attend to various morally relevant features of situations that give us reasons for
acting or abstaining from acting in regard to others that no theory of moral status is well equipped to address.
For example, we often make distinctions that lead us to justifiably give preferential treatment to either
individuals or classes of individuals, such as preferences to our children, our friends, our companion animals,
and the like. We have to sort through which preferences are justifiable and which not, but no general theory of
moral status suitably directs us in this task.
These cautions appropriately warn us about the limits of theories of moral status, but moral status remains a
matter of paramount moral importance and should be carefully analyzed, not ignored or downplayed. We take a
similar view about basic human rights in Chapter 9. It would be a catastrophic moral loss if we could not be
guided by basic norms of moral status and basic rights. Practices of slavery as well as abuses of human research
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subjects have thrived historically in part because of defective criteria of moral status and inattention to basic
rights connected to moral status. In too many places in recent decades, some children who were institutionalized
as “mentally infirm,” some elderly patients in chronic disease hospitals, and some racial groups were treated as
if they had little or no moral status by some of the finest centers of biomedical research in the world and by the
sponsors of such research.59 It is easy to forget how recognition of moral status can generate interest in and
support acknowledgment of vital moral protections.60
VULNERABLE POPULATIONS AND VULNERABLE INDIVIDUALS
Concern about moral status has often arisen from the need to protect vulnerable populations. Rules requiring
additional protections for certain populations are a foundation stone of both clinical ethics and research ethics.
These protections arose historically from concerns about exploitation and the inability of the members of some
groups to consent to or to refuse an intervention.61 Vulnerable persons in biomedical contexts are sometimes
incapable of protecting their interests because of sickness, debilitation, mental illness, immaturity, cognitive
impairment, and the like. They may be socioeconomically impoverished, which adds to the potential for harmful
outcomes. Populations such as homeless families, political refugees, and illegal aliens can also in some
circumstances be considered vulnerable.
However, the term vulnerable should be used with caution, because it also can function to stereotype or to
overprotect people in some populations.62
Guidelines for Vulnerable Populations
In controversies over uses of vulnerable populations in biomedical research, one of three general guidelines
might be applied to a research practice:
1. 1. Do not allow the practice (a policy of full prohibition).
2. 2. Allow the practice without regard to conditions (a policy of full permissibility).
3. 3. Allow the practice only under certain conditions (a policy of partial permissibility).
As an example, public opinion is deeply divided over which of these three guidelines should govern various uses
of human fetuses in research—in utero and after deliberate abortions. Many prefer the first, many the second,
and many the third. Divided opinions also mark debates about experimentation with animals, nontherapeutic
experimentation with children, and experimentation with incompetent individuals. Few today defend either full
prohibition or full permissibility of research involving these groups, but many would support a prohibition on
the use of some classes of these individuals in research, including the great apes and seriously ill children. To
reject the first two guidelines—as is common for some vulnerable populations—is to accept the third, which in
turn requires that we establish a reasonably precise set of moral protections that fix the conditions that allow us
to proceed or not to proceed with the members of a specified population.
Problems of moral coherence bedevil these issues. Near-universal agreement exists that humans who lack certain
capacities should not be used in biomedical research that carries significant risk and does not offer them a
prospect of direct benefit. Protections for these vulnerable populations should be at a high level because of their
vulnerability. Nonhuman animals are usually not treated equivalently, though the reasons for this differential
treatment are generally left unclear in public policy. Their limited cognitive and moral capacities have
traditionally provided part of the substantive justification for, rather than against, their use in biomedical
research when human subjects cannot ethically be used. Whether causing harm and premature death to these
animals can be justified, but not justified for humans with similarly limited capacities, is an unresolved issue in
biomedical ethics, and one that threatens coherence in moral theory.63
Practices of abortion, notably where human fetuses are capable of sentience, raise related issues of moral
coherence. The long and continuing struggle over abortion primarily concerns two questions: (1) What is the
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moral status of the fetus (at various developmental points)? (2) What should we do when the rights generated by
this status conflict with the rights of women to control their futures? Near-universal agreement exists that an
exceedingly late-term fetus is not relevantly different from a newborn. Another month earlier in development
will show little in the way of morally relevant differences, and incoherence threatens any point selected on the
continuum of growth as the marker of moral status. As with animal subjects, the status of human fetuses tends to
be downgraded because of their lack of sentient, cognitive, and moral capacities, and this deficiency then plays a
role in attempts to justify abortion. Questions about whether we can justify such downgrading and whether we
can justify causing premature death to the fetus remain among the most difficult questions in biomedical ethics.
Sympathy and Impartiality
Problems of moral status and vulnerable populations raise questions about our capacity to sympathize with the
predicament of others while maintaining appropriate impartiality in our judgments. In previous sections of this
chapter we connected our reflections on moral status to our discussion of moral norms in Chapter 1. We will
now connect our reflections to the account of moral character in Chapter 2. In particular, we focus on moral
sympathy as a trait similar to compassion and usually involving empathy.
The capacity for sympathy enables us to enter into, however imperfectly, the thoughts and feelings of another
individual or group. Through sympathy, we can form a concern for the other’s welfare. David Hume
discerningly argued that while most human beings have only a limited sympathy with the plight of others, they
also have some level of capacity to overcome these limits through calm, reflective judgments:
[T]he generosity of men is very limited, and … seldom extends beyond their friends and family, or,
at most, beyond their native country. … [T]ho’ [our] sympathy [for others] be much fainter than our
concern for ourselves, and a sympathy with persons remote from us much fainter than that with
persons near and contiguous; yet we neglect all these differences in our calm judgments concerning
the characters of men.64
After we attend to ourselves, our sympathy reaches out most naturally to our intimates, such as friends and
members of our family. From there sympathy can move on to a wider, but still relatively small, group of
acquaintances, such as those with whom we have the most frequent contact or in whose lives we have most
heavily invested. Our sympathy with those truly remote from us, such as strangers or persons in other nations, is
usually diminished by comparison to sympathy with those close to us, but it can be aroused by contact with
strangers and by calm judgments about their situations.
Both dissimilarity to and distance from other persons function to limit our sympathy. People in nursing homes
are often both dissimilar to and distant from other persons, as are individuals with diseases such as Lesch-
Nyhan, human embryos, and animals used in research. It is more difficult for many persons to view these
individuals as having a significant moral status that places demands on us and holds us accountable. Even
though we know that individuals in vulnerable populations suffer, our sympathy and moral responsiveness do
not come easily, especially when the individuals are hidden from our view or are of another species.
Not surprisingly, many persons among the “moral saints” and some of the “moral heroes” discussed in Chapter 2
exhibit an expanded and deeper sympathy with the plight of those who suffer. Their depth of sympathy is
beyond what most of us achieve or even hold as a moral ideal. By contrast, severely limited sympathy, together
with severely limited generosity, helps explain social phenomena such as child abuse, animal abuse, and the
neglect of enfeebled elderly persons in some nursing homes. It is regrettable that enlarged affections are not
commonplace in human interactions, but this fact is predictable given what we know about human nature.
Hume proposes to address such limited sympathy for those different from us by the deliberate exercise of
impartiality in our calm judgments: “It is necessary for us, in our calm judgments and discourse … to neglect all
these differences, and render our sentiments more public and social.”65 He asks us to reach out and seek a more
extensive sympathy. His proposals accord with our discussion in Chapter 2 of Aristotelian “moral excellence.” A
morally excellent person will work both to enlarge his or her sympathy for those who suffer and to reach calm
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and unbiased judgments. Hume characterizes this ideal as a “common” or “general” point of view in moral
judgment. This perspective, which some philosophers have called “the moral point of view,” controls for the
distortions and biases created by our closeness to some individuals, and opens us up to a more extensive
sympathy.66
This perspective could help in addressing several problems encountered in this chapter, but it would be
unreasonable to insist on a moral point of view that incorporates such a profoundly deep sympathy and extensive
impartiality that it applies equally across cultures, populations, geography, and species. Extensive sympathy is a
regulative, but arduous, ideal of conduct—as is the entire range of moral excellence examined in Chapter 2.
When consistently achieved across a lifetime, it is a morally beautiful adornment of character, however rare.
CONCLUSION
In this chapter the language of “theories,” “criteria,” “guidelines,” and “degrees” of moral status has dominated,
rather than the language of “principles,” “rules,” “virtues,” and “character” found in Chapters 1 and 2. These
forms of discourse and the territories they cover should be carefully distinguished, even though they are related
in various ways we have noted. For instance, the characteristics associated with moral status determine the kinds
of harms and benefits an individual or group can experience. These characteristics also help to determine which
moral principles apply and how they apply.
We have not argued that the common morality—as discussed in Chapters 1 and 2—gives us an adequate and
workable framework of criteria of moral status, and we have left several issues about moral status undecided.
There is justified uncertainty in arguments about the moral status of embryos, fetuses, brain-damaged humans,
and animals used in research—and about how to analyze the idea of degrees of moral status. Reasoned
disagreement is to be expected, but those who engage these issues need to be clear about the models they use
and their defense, subjects rarely found in the literature of bioethics. If the model accepts degrees of moral
status, that model needs to be stated with precision. If the model rejects degrees of moral status, that account,
too, needs a more penetrating analysis than is usually provided. The goal of developing tiers and hierarchies of
moral status is a demanding task, but its pursuit is essential in certain domains. We return to some of these
problems near the end of Chapter 10, where we discuss both the common morality and the possibility of “moral
change” in conceptions of moral status.
NOTES
1. 1. Cf. Mark H. Bernstein, On Moral Considerability: An Essay on Who Morally Matters (New York:
Oxford University Press, 1998).
2. 2. This conceptual thesis is indebted to David DeGrazia, “Moral Status as a Matter of Degree,” Southern
Journal of Philosophy 46 (2008): 181–98, esp. 183. See further Tom L. Beauchamp and David DeGrazia,
Principles of Animal Research Ethics (New York: Oxford University Press, 2019).
3. 3. For one examination of the broad range of issues involved in assessments of moral status, see the essays
in Is this Cell a Human Being? Exploring the Status of Embryos, Stem Cells and Human-Animal Hybrids,
ed. Antoine Suarez and Joachim Huarte (Germany: Springer, 2011).
4. 4. This history and its relevance for biomedical ethics are presented in Ronald A. Lindsay, “Slaves,
Embryos, and Nonhuman Animals: Moral Status and the Limitations of Common Morality Theory,”
Kennedy Institute of Ethics Journal 15 (December 2005): 323–46. On the history of problems about moral
status for nonhuman animals, see the four chapters by Stephen R. L. Clark, Aaron Garrett, Michael
Tooley, and Sarah Chan and John Harris in The Oxford Handbook of Animal Ethics, ed. Tom L.
Beauchamp and R. G. Frey (New York: Oxford University Press, 2011), chaps. 1–2, 11–12.
5. 5. D. J. Powner and I. M. Bernstein, “Extended Somatic Support for Pregnant Women after Brain Death,”
Critical Care Medicine 31 (2003): 1241–49; David R. Field et al., “Maternal Brain Death during
Pregnancy,” JAMA: Journal of the American Medical Association 260 (August 12, 1988): 816–22; and
Xavier Bosch, “Pregnancy of Brain-Dead Mother to Continue,” Lancet 354 (December 18–25, 1999):
2145.
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6. 6. See Hilde Lindemann Nelson, “The Architect and the Bee: Some Reflections on Postmortem
Pregnancy,” Bioethics 8 (1994): 247–67; Daniel Sperling, “From the Dead to the Unborn: Is There an
Ethical Duty to Save Life?” Medicine and Law Journal 23 (2004): 567–86; Christoph Anstotz, “Should a
Brain-Dead Pregnant Woman Carry Her Child to Full Term? The Case of the ‘Erlanger Baby,’” Bioethics
7 (1993): 340–50; and Neda Farshbaf, “Young Mother Kept Alive for 123 Days so Her Babies Could
Survive,” USA Today, July 11, 2017, available at
https://www.usatoday.com/story/news/humankind/2017/07/11/young-mother-kept-alive-123-days-so-her-
babies-could-survive/103615364/ (accessed April 1, 2018).
7. 7. Daniel Sperling, Management of Post-Mortem Pregnancy: Legal and Philosophical Aspects (Aldershot,
UK: Ashgate, 2006) (addressing questions of both the moral and the legal status of the fetus); and Sarah
Elliston, “Life after Death? Legal and Ethical Considerations of Maintaining Pregnancy in Brain-Dead
Women,” in Intersections: Women on Law, Medicine and Technology, ed. Kerry Petersen (Aldershot, UK:
Ashgate, 1997), pp. 145–65. Our discussion does not presume that dead persons have legally protected
interests and rights; we are focusing on a case in which the dead pregnant woman had an advance
directive requesting that all medical technology be withheld or withdrawn under conditions that included
her death.
8. 8. On this distinction, see Mary Midgley, “Duties Concerning Islands,” in Environmental Ethics, ed.
Robert Elliott (Oxford: Oxford University Press, 1995); Christopher W. Morris, “The Idea of Moral
Standing,” in Oxford Handbook of Animal Ethics (2011), pp. 261–62; and David Copp, “Animals,
Fundamental Moral Standing, and Speciesism,” in Oxford Handbook of Animal Ethics (2011), pp. 276–77.
9. 9. On why something counts “in its own right,” see Allen Buchanan, “Moral Status and Human
Enhancement,” Philosophy & Public Affairs 37 (2009): 346–81, esp. 346; Frances M. Kamm, “Moral
Status,” in Intricate Ethics: Rights, Responsibilities, and Permissible Harm (New York: Oxford University
Press, 2006), pp. 227–30; and L. Wayne Sumner, “A Third Way,” in The Problem of Abortion, 3rd ed., ed.
Susan Dwyer and Joel Feinberg (Belmont, CA: Wadsworth, 1997), p. 99. We thank Chris Morris for these
references.
10. 10. Robert P. George and Alfonso Gómez-Lobo, “The Moral Status of the Human Embryo,” Perspectives
in Biology and Medicine 48 (2005): 201–10, quotation spanning pp. 201–5.
11. 11. Cf. the Preamble and Articles in United Nations, Universal Declaration of Human Rights, available at
http://www.un.org/Overview/rights.html (accessed April 5, 2018).
12. 12. On September 7, 2001, V. Ourednik et al. published an article entitled “Segregation of Human Neural
Stem Cells in the Developing Primate Forebrain,” Science 293 (2001): 1820–24. This article is the first
report of the implanting of human neural stem cells into the brains of a primate, creating a monkey–human
chimera. The article stimulated interest in both biomedical ethics and biomedical sciences. See further
National Institutes of Health (NIH), Final “National Institutes of Health Guidelines for Human Stem Cell
Research” (2009). Available at https://stemcells.nih.gov/policy/2009-guidelines.htm (accessed April 5,
2018). These guidelines implement Executive Order 13505 issued on March 9, 2009, by then US
President Barack Obama.
13. 13. “Chimeric” usually refers to the cellular level, whereas “transgenic” concerns the genetic level. See
the argument in Mark K. Greene et al., “Moral Issues of Human–Non-Human Primate Neural Grafting,”
Science 309 (July 15, 2005): 385–86. See also the conclusions of Julian Savulescu, “Genetically Modified
Animals: Should There Be Limits to Engineering the Animal Kingdom?” in Oxford Handbook of Animal
Ethics (2011), esp. pp. 644–64; Jason Robert and Françoise Baylis, “Crossing Species Boundaries,”
American Journal of Bioethics 3 (2003): 1–13 (with commentaries); Henry T. Greely, “Defining Chimeras
… and Chimeric Concerns,” American Journal of Bioethics 3 (2003): 17–20; Robert Streiffer, “At the
Edge of Humanity: Human Stem Cells, Chimeras, and Moral Status,” Kennedy Institute of Ethics Journal
15 (2005): 347–70; and Phillip Karpowicz, Cynthia B. Cohen, and Derek van der Kooy1, “Is It Ethical to
Transplant Human Stem Cells into Nonhuman Embryos?” Nature Medicine 10 (2004): 331–35.
14. 14. Hiromitsu Nakauchi et al., “Generation of Rat Pancreas in Mouse by Interspecific Blastocyst Injection
of Pluripotent Stem Cells,” Cell 142 (2010): 787–99. The roles of rat and mouse were reversed (i.e.,
swapped) in later work by this team: see T. Yamaguchi, H. Sato, M. Kato-Itoh et al., “Interspecies
Organogenesis Generates Autologous Functional Islets,” Nature 542 (2017): 191–96.
15. 15. Jun Wu, Aida Platero-Luengo, Masahiro Sakurai, et al., “Interspecies Chimerism with Mammalian
Pluripotent Stem Cells,” Cell 168 (2017): 473–86.
https://www.usatoday.com/story/news/humankind/2017/07/11/young-mother-kept-alive-123-days-so-her-babies-could-survive/103615364/
http://www.un.org/Overview/rights.html
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16. 16. National Institutes of Health (NIH), “NIH Research Involving Introduction of Human Pluripotent
Cells into Non-Human Vertebrate Animal Pre-Gastrulation Embryos,” Notice Number NOT-OD-15-158,
Release Date September 23, 2015, available at https://grants.nih.gov/grants/guide/notice-files/NOT-OD-
15-158.html (accessed March 25, 2018); and National Institutes of Health, Office of Science Policy, “Next
Steps on Research Using Animal Embryos Containing Human Cells,” August 4, 2016, available at
http://osp.od.nih.gov/under-the-poliscope/2016/08/next-steps-research-using-animal-embryos-containing-
human-cells (accessed April 1, 2018).
17. 17. See further Tom L. Beauchamp, “Moral Problems in the Quest for Human-Nonhuman Chimeras with
Human Organs,” Journal of Medical Ethics, forthcoming.
18. 18. One attractive view is that permitting the creation of animal–human hybrids for research purposes is
defensible, as long as they are destroyed within a specified period of time. See Henry T. Greely,
“Human/Nonhuman Chimeras: Assessing the Issues,” in Oxford Handbook of Animal Ethics (2011), pp.
671–72, 676, 684–86. However, a federal ban on their creation was recommended by the President’s
Council on Bioethics, Reproduction & Responsibility: The Regulation of New Biotechnologies
(Washington, DC: President’s Council on Bioethics, 2004), available at
http://bioethics.georgetown.edu/pcbe/ (accessed January 28, 2012). See also Scottish Council on Human
Bioethics, Embryonic, Fetal and Post-Natal Animal-Human Mixtures: An Ethical Discussion (Edinburgh,
UK: Scottish Council on Human Bioethics, 2010), “Animal-Human Mixtures” Publication Topic,
available at http://www.schb.org.uk/ (accessed April 1, 2018).
19. 19. National Research Council, National Academy of Science, Committee on Guidelines for Human
Embryonic Stem Cell Research, Guidelines for Human Embryonic Stem Cell Research (Washington, DC:
National Academies Press, 2005), with Amendments 2007 available online at
https://www.nap.edu/catalog/11871/2007-amendments-to-the-national-academies-guidelines-for-human-
embryonic-stem-cell-research; and Mark Greene, “On the Origin of Species Notions and Their Ethical
Limitations,” in Oxford Handbook of Animal Ethics (2011), pp. 577–602.
20. 20. The language of “person” has a long history in theology, especially in Christian theological efforts to
explicate the three individualities of the Trinity. On the potential of chimeras, see Greene et al., “Moral
Issues of Human–Nonhuman Primate Neural Grafting.”
21. 21. Julian Savulescu, “Should a Human-Pig Chimera Be Treated as a Person?” Quartz, Penned Pals,
March 24, 2017, available at https://qz.com/940841/should-a-human-pig-chimera-be-treated-as-a-person/
(accessed April 5, 2017). Italics added.
22. 22. Our objections do not apply to metaphysical accounts of the nature of persons that have nothing to do
with moral status. In the metaphysical literature, see Derek Parfit, “Persons, Bodies, and Human Beings,”
in Contemporary Debates in Metaphysics, ed. Theodore Sider, John Hawthorne, and Dean W. Zimmerman
(Oxford: Blackwell, 2008), pp. 177–208; and Paul F. Snowdon, Persons, Animals, Ourselves (Oxford:
Oxford University Press, 2014).
23. 23. See further Tom L. Beauchamp, “The Failure of Theories of Personhood,” Kennedy Institute of Ethics
Journal 9 (1999): 309–24; and Lisa Bartolotti, “Disputes over Moral Status: Philosophy and Science in
the Future of Bioethics,” Health Care Analysis 15 (2007): 153–58, esp. 155–57.
24. 24. At least one adherent of the first theory reaches precisely this conclusion. See Patrick Lee,
“Personhood, the Moral Standing of the Unborn, and Abortion,” Linacre Quarterly (May 1990): 80–89,
esp. 87; and Lee, “Soul, Body and Personhood,” American Journal of Jurisprudence 49 (2004): 87–125.
25. 25. For a variety of accounts see Michael Tooley, “Are Nonhuman Animals Persons?” in Oxford
Handbook of Animal Ethics (2011), pp. 332–73; Harry G. Frankfurt, Necessity, Volition, and Love
(Cambridge: Cambridge University Press, 1999), chaps. 9, 11; Mary Anne Warren, Moral Status (Oxford:
Oxford University Press, 1997), chap. 1; H. Tristram Engelhardt, Jr., The Foundations of Bioethics, 2nd
ed. (New York: Oxford University Press, 1996), chaps. 4, 6; and Lynne Rudder Baker, Persons and Bodies
(Cambridge: Cambridge University Press, 2000), chaps. 4, 6.
26. 26. Korsgaard, “Kant’s Formula of Humanity,” in Creating the Kingdom of Ends (Cambridge: Cambridge
University Press, 1996), pp. 110–11. See further her “Interacting with Animals: A Kantian Account,” in
Oxford Handbook of Animal Ethics (2011), pp. 91–118, esp. p. 103.
27. 27. See Tom Regan, The Case for Animal Rights (Berkeley: University of California Press, updated ed.
2004), pp. 178, 182–84.
https://grants.nih.gov/grants/guide/notice-files/NOT-OD-15-158.html
http://osp.od.nih.gov/under-the-poliscope/2016/08/next-steps-research-using-animal-embryos-containing-human-cells
http://bioethics.georgetown.edu/pcbe/
http://www.schb.org.uk/
https://www.nap.edu/catalog/11871/2007-amendments-to-the-national-academies-guidelines-for-human-embryonic-stem-cell-research
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28. 28. How this conclusion should be developed is debatable. It would be wrong to treat a late-stage
Alzheimer patient in the way biomedical researchers often treat experimental animals, but it can be argued
that we should treat primate research subjects with the same care taken in treating late-stage Alzheimer
patients.
29. 29. See Korsgaard’s assessment of what animals lack in “Interacting with Animals: A Kantian Account,”
p. 101.
30. 30. Colin Allen and Marc Bekoff, Species of Mind: The Philosophy and Biology of Cognitive Ethology
(Cambridge, MA: MIT Press, 1997); and Colin Allen, “Assessing Animal Cognition: Ethological and
Philosophical Perspectives,” Journal of Animal Science 76 (1998): 42–47.
31. 31. See Donald R. Griffin, Animal Minds: Beyond Cognition to Consciousness, 2nd ed. (Chicago:
University of Chicago Press, 2001); Rosemary Rodd, Ethics, Biology, and Animals (Oxford: Clarendon,
1990), esp. chaps. 3–4, 10; and Tom L. Beauchamp and Victoria Wobber, “Autonomy in Chimpanzees,”
Theoretical Medicine and Bioethics 35 (April 2014): 117–32.
32. 32. Cf. Gordon G. Gallup, “Self-Recognition in Primates,” American Psychologist 32 (1977): 329–38; and
David DeGrazia, Taking Animals Seriously: Mental Life and Moral Status (New York: Cambridge
University Press, 1996), esp. p. 302.
33. 33. A full account of these criteria would require explication in terms of some of the cognitive conditions
discussed previously. For example, the capacity to make moral judgments requires a certain level of the
capacity for understanding.
34. 34. Kant, Grounding for the Metaphysics of Morals, trans. James W. Ellington, in Kant, Ethical
Philosophy (Indianapolis, IN: Hackett, 1983), pp. 38–41, 43–44 (Preussische Akademie, pp. 432, 435,
436, 439–40).
35. 35. Examples of such theories—focused on the claim that there is sufficient evidence to count some
nonhuman animals as moral agents, possibly persons, and therefore as members of the moral community
—are Marc Bekoff and Jessica Pierce, Wild Justice: The Moral Lives of Animals (Chicago: University of
Chicago Press, 2009); Steven M. Wise, Rattling the Cage: Toward Legal Rights for Animals (Boston: Da
Capo Press of Perseus Books, 2014, updated ed.); Michael Bradie, “The Moral Life of Animals,” in
Oxford Handbook of Animal Ethics (2011), pp. 547–73, esp. pp. 555–70; and Tom Regan, The Case for
Animal Rights, esp. pp. 151–56.
36. 36. See Colin Allen and Michael Trestman, “Animal Consciousness,” Stanford Encyclopedia of
Philosophy, substantive revision of October 24, 2016, especially sections 6–7, available at
https://plato.stanford.edu/entries/consciousness-animal/ (accessed June 12, 2018); and David Edelman,
Bernard Baars, and Anil Seth, “Identifying Hallmarks of Consciousness in Non-Mammalian Species,”
Consciousness and Cognition 14 (2005): 169–87.
37. 37. The terms pain and suffering are frequently used interchangeably, but they should be distinguished on
grounds that suffering may require more cognitive ability than the mere experience of pain. Suffering may
occur from aversive or harmful states such as misery that are not attended by pain. For a close analysis of
suffering and related notions, see David DeGrazia, “What Is Suffering and What Kinds of Beings Can
Suffer?” in Suffering and Bioethics, ed. Ronald Green and Nathan Palpant (New York: Oxford University
Press, 2014): 134–53. See also Robert Elwood, “Pain and Suffering in Invertebrates?” ILAR Journal 52
(2011): 175–84; Tom L. Beauchamp and David B. Morton, “The Upper Limits of Pain and Suffering in
Animal Research: A Moral Assessment of The European Union’s Legislative Framework,” Cambridge
Quarterly of Healthcare Ethics 24 (October 2015): 431–47; and David DeGrazia and Tom L. Beauchamp
“Moving Beyond the Three Rs,” ILAR Journal 61 (Fall 2019).
38. 38. Some defenders also seem to claim that this capacity is both necessary and sufficient for moral status
—a more difficult claim to support. See two opposed theories on this issue in L. Wayne Sumner, Abortion
and Moral Theory (Princeton, NJ: Princeton University Press, 1981); and Bonnie Steinbock, Life before
Birth: The Moral and Legal Status of Embryos and Fetuses, 2nd ed. (New York: Oxford University Press,
2011).
39. 39. Baruch Brody, Abortion and the Sanctity of Life (Cambridge, MA: MIT Press, 1975). Brain birth is
said to be analogous to brain death at critical transition points.
40. 40. This point is made in Stephen Griffith, “Fetal Death, Fetal Pain, and the Moral Standing of a Fetus,”
Public Affairs Quarterly 9 (1995): 117.
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41. 41. Bentham, An Introduction to the Principles of Morals and Legislation, ed. J. H. Burns and H. L. A.
Hart; with a new introduction by F. Rosen; and an interpretive essay by Hart (Oxford: Clarendon Press,
1996), p. 283.
42. 42. See, for example, Peter Singer, Animal Liberation, 2nd ed. (London: Pimlico, 1995), p. 8; and Sumner,
Abortion and Moral Theory.
43. 43. See R. G. Frey, “Moral Standing, the Value of Lives, and Speciesism,” Between the Species 4
(Summer 1988): 191–201; “Animals,” in The Oxford Handbook of Practical Ethics (New York: Oxford
University Press, 2003), esp. pp. 163, 178; and his “Autonomy and the Value of Animal Life,” Monist 70
(January 1987): 50–63. A somewhat similar, but differently grounded, theory appears in Martha
Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Cambridge, MA: Harvard
University Press, 2006), especially p. 361.
44. 44. For relevant theoretical literature, see Ronald M. Green, “Determining Moral Status,” American
Journal of Bioethics 2 (Winter 2002): 20–30; and Diane Jeske, “Special Obligations,” Stanford
Encyclopedia of Philosophy (Spring 2014 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/spr2014/entries/special-obligations/ (accessed March 28, 2018). For a
compelling account of how bonding can occur with animal research subjects and its moral importance, see
John P. Gluck, Voracious Science and Vulnerable Animals: A Primate Scientist’s Ethical Journey
(Chicago: University of Chicago Press, 2016); and see also Lily-Marlene Russow, “Ethical Implications of
the Human-Animal Bond in the Laboratory,” ILAR Journal 43 (2002): 33–37.
45. 45. Carson Strong and Garland Anderson, “The Moral Status of the Near-Term Fetus,” Journal of Medical
Ethics 15 (1989): 25–26.
46. 46. See the related conclusion in Nancy Jecker, “The Moral Status of Patients Who Are Not Strict
Persons,” Journal of Clinical Ethics 1 (1990): 35–38.
47. 47. For a broader set of patients than this list suggests—especially countless terminally ill patients—see
Felicia Cohn and Joanne Lynn, “Vulnerable People: Practical Rejoinders to Claims in Favor of Assisted
Suicide,” in The Case against Assisted Suicide: For the Right to End-of-Life Care, ed. Kathleen Foley and
Herbert Hendin (Baltimore: Johns Hopkins University Press, 2002), pp. 238–60.
48. 48. An influential general strategy of melding diverse theories is proposed in Warren, Moral Status,
though her set of melded theories differs from ours. A similar strategy, with a different set of melded
theories, appears in Lawrence J. Nelson and Michael J. Meyer, “Confronting Deep Moral Disagreements:
The President’s Council on Bioethics, Moral Status, and Human Embryos,” American Journal of Bioethics
5 (2005): 33–42 (with a response to critics, pp. W14–16).
49. 49. The problem of equal and unequal consideration of interests, and different degrees of consideration, is
discussed in DeGrazia, “Moral Status as a Matter of Degree,” esp. pp. 188, 191.
50. 50. [Mary Warnock], Report of the Committee of Inquiry into Human Fertilisation and Embryology:
Presented to Parliament (London: HMSO, July 1984). [The Warnock Committee Report.]
51. 51. Chief Medical Officer’s Expert Group, Stem Cell Research: Medical Progress with Responsibility
(London: Department of Health, 2000).
52. 52. Chief Medical Officer’s Expert Group, Stem Cell Research, sects. 4.6, 4.12, pp. 38–39.
53. 53. See David DeGrazia, “Great Apes, Dolphins, and the Concept of Personhood,” Southern Journal of
Philosophy 35 (1997): 301–20; and Beauchamp, “The Failure of Theories of Personhood.”
54. 54. For an all-or-nothing account that rejects degrees of moral status, see Elizabeth Harman, “The
Potentiality Problem,” Philosophical Studies 114 (2003): 173–98.
55. 55. Carson Strong, “The Moral Status of Preembryos, Embryos, Fetuses, and Infants,” Journal of
Medicine and Philosophy 22 (1997): 457–78.
56. 56. Cf. the similar conclusion, with an argued defense, in Mary Anne Warren, “Moral Status,” in A
Companion to Applied Ethics, ed. R. G. Frey and Christopher Wellman (Oxford: Blackwell, 2003), p. 163.
See further Elizabeth Harman, “Creation Ethics: The Moral Status of Early Fetuses and the Ethics of
Abortion,” Philosophy & Public Affairs 28 (1999): 310–324.
57. 57. For related, yet different, objections to this account, see Rebecca L. Walker, “Beyond Primates:
Research Protections and Animal Moral Value,” Hastings Center Report 46 (2016): 28–30.
58. 58. See Mary Midgley, Animals and Why They Matter (Athens: University of Georgia Press, 1983), pp.
28–30, 100; Rosalind Hursthouse, “Virtue Ethics and the Treatment of Animals,” in Oxford Handbook of
https://plato.stanford.edu/archives/spr2014/entries/special-obligations/
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Animal Ethics (2011), chap. 4; and Hursthouse, Ethics, Humans and Other Animals (London: Routledge,
2000), pp. 127–32.
59. 59. Classic cases in the United States are the Tuskegee syphilis experiment, the use of children with
intellectual disabilities at the Willowbrook State School, and the injection of cancer cells into debilitated
patients at the Jewish Chronic Disease Hospital in Brooklyn. For the first, see James H. Jones, Bad Blood:
The Tuskegee Syphilis Experiment, rev. ed. (New York: Free Press, 1993), and Susan Reverby, ed.,
Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study (Chapel Hill: University of North Carolina
Press, 2000). For the others, see Jay Katz et al., eds., Experimentation with Human Beings: The Authority
of the Investigator, Subject, Professions, and State in the Human Experimentation Process (New York:
Russell Sage Foundation, 1972); and National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research, Research Involving Those Institutionalized as Mentally Infirm
(Washington: Department of Health, Education, and Welfare [DHEW], 1978).
60. 60. Parallel debates in environmental ethics focus on the moral status of dimensions of nature beyond
human and nonhuman animals; for example, whether individual trees, plants, species, and ecosystems
have moral status. See Paul Taylor, Respect for Nature: A Theory of Environmental Ethics (Princeton, NJ:
Princeton University Press, 2011); Gary Varner, “Environmental Ethics, Hunting, and the Place of
Animals,” Oxford Handbook of Animal Ethics (2011), pp. 855–76; Andrew Brennan and Y. S. Lo,
Understanding Environmental Philosophy (New York: Routledge, 2014); Lawrence E. Johnson, A Morally
Deep World: An Essay on Moral Significance and Environmental Ethics (Cambridge: Cambridge
University Press, 1993); Agnieszka Jaworska and Julie Tannenbaum, “The Grounds of Moral Status,”
Stanford Encyclopedia of Philosophy (revision of January 10, 2018), available at
https://plato.stanford.edu/entries/grounds-moral-status/ (accessed March 19, 2018); and Alasdair
Cochrane, “Environmental Ethics,” section 1 (“Moral Standing”), Internet Encyclopedia of Philosophy,
available at https://www.iep.utm.edu/envi-eth/ (accessed March 19, 2018).
61. 61. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research,
The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research
(Washington, DC: DHEW Publication OS 78–0012, 1978); Code of Federal Regulations, Title 45 (Public
Welfare), Part 46 (Protection of Human Subjects),
http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html (accessed July 15, 2011).
62. 62. On analysis of vulnerability, see Kenneth Kipnis, “Vulnerability in Research Subjects: A Bioethical
Taxonomy,” in National Bioethics Advisory Commission (NBAC), Ethical and Policy Issues in Research
Involving Human Participants, vol. 2 (Bethesda, MD: NBAC, 2001), pp. G-1–13.
63. 63. See Rebecca L. Walker, “Human and Animal Subjects of Research: The Moral Significance of
Respect versus Welfare,” Theoretical Medicine and Bioethics 27 (2006): 305–31. A major document that
illustrates the problem is an Institute of Medicine (now National Academy of Medicine) report:
Committee on the Use of Chimpanzees in Biomedical and Behavioral Research, Chimpanzees in
Biomedical and Behavioral Research: Assessing the Necessity (Washington, DC: National Academies
Press, 2011), available at https://www.nap.edu/catalog/13257/chimpanzees-in-biomedical-and-behavioral-
research-assessing-the-necessity (retrieved August 16, 2017). See also National Institutes of Health, Office
of the Director, “Statement by NIH Director Dr. Francis Collins on the Institute of Medicine Report
Addressing the Scientific Need for the Use of Chimpanzees in Research,” Thursday, December 15, 2011,
available at http://www.nih.gov/news/health/dec2011/od-15.htm (accessed December 15, 2011); and the
follow-up report, Council of Councils, National Institutes of Health. Council of Councils Working Group
on the Use of Chimpanzees in NIH-Supported Research: Report, 2013, available at
https://dpcpsi.nih.gov/council/pdf/FNL_Report_WG_Chimpanzees (accessed August 16, 2017);
National Institutes of Health, Announcement of Agency Decision: Recommendations on the Use of
Chimpanzees in NIH-Supported Research, available at
dpcpsi.nih.gov/council/pdf/NIHresponse_to_Council_of_Councils_recommendations_62513
(accessed July 28, 2013).
64. 64. Hume, A Treatise of Human Nature, ed. David Fate Norton and Mary J. Norton (Oxford: Oxford
University Press, 2006), 3.3.3.2.
65. 65. Hume, An Enquiry Concerning the Principles of Morals, ed. Tom L. Beauchamp (Oxford: Oxford
University Press, 1998), 5.42.
https://plato.stanford.edu/entries/grounds-moral-status/
http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html
https://www.nap.edu/catalog/13257/chimpanzees-in-biomedical-and-behavioral-research-assessing-the-necessity
http://www.nih.gov/news/health/dec2011/od-15.htm
https://dpcpsi.nih.gov/council/pdf/FNL_Report_WG_Chimpanzees
http://dpcpsi.nih.gov/council/pdf/NIHresponse_to_Council_of_Councils_recommendations_62513
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66. 66. We here concentrate on the role impartiality plays in expanding sympathy, but impartiality also can
help correct misdirected and exaggerated sympathy that borders on sentimentality. For a critique of a kind
of sentimentality that stands opposed to potentially effective measures to obtain transplantable organs
from brain-dead individuals, see Joel Feinberg, “The Mistreatment of Dead Bodies,” Hastings Center
Report 15 (February 1985): 31–37.
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4
Respect for Autonomy
The principle of respect for the autonomous choices of persons runs as deep in morality as any principle, but
determining its nature, scope, and strength requires careful analysis. We explore the concept of autonomy and
the principle of respect for autonomy in this chapter primarily to examine patients’, subjects’, and surrogates’
decision making in health care and research.1
We begin our analysis of a framework of four principles of biomedical ethics with this principle of respect, but
the order of our chapters does not imply that this principle has moral priority over, or a more foundational status
than, other principles. Not only do we hold that the principle of respect for autonomy lacks priority over the
other principles, but we maintain that it is not excessively individualistic to the neglect of the social nature of
individuals, not excessively focused on reason to the neglect of the emotions, and not unduly legalistic by
highlighting legal rights while downplaying social practices.
THE CONCEPT OF AUTONOMY AND THE PRINCIPLE OF RESPECT FOR
AUTONOMY
The word autonomy, derived from the Greek autos (“self”) and nomos (“rule,” “governance,” or “law”),
originally referred to the self-rule or self-governance of independent city-states. Autonomy has since been
extended to individuals. The autonomous individual acts freely in accordance with a self-chosen plan, analogous
to the way an autonomous government manages its territories and sets its policies. In contrast, a person of
diminished autonomy is substantially controlled by others or incapable of deliberating or acting on the basis of
his or her desires and plans. For example, cognitively impaired individuals and prisoners often have diminished
autonomy. Mental incapacitation limits the autonomy of a person with a severe mental handicap, and
incarceration constrains a prisoner’s autonomy.
Two general conditions are essential for autonomy: liberty (independence from controlling influences) and
agency (capacity for intentional action). However, disagreement exists over the precise meaning of these two
conditions and over whether additional conditions are required for autonomy.2 As our first order of business, we
use these basic conditions to construct a theory of autonomy that we believe suitable for biomedical ethics.
Theories of Autonomy
Some theories of autonomy feature the abilities, skills, or traits of the autonomous person, which include
capacities of self-governance such as understanding, reasoning, deliberating, managing, and independent
choosing.3 Our focus in this chapter on decision making leads us to concentrate on autonomous choice rather
than general capacities for self-governance and self-management. Even autonomous persons who have self-
governing capacities, and generally manage their health well, sometimes fail to govern themselves in particular
choices because of temporary constraints caused by illness, depression, ignorance, coercion, or other conditions
that limit their judgment or their options.
An autonomous person who signs a consent form for a procedure without reading or understanding the form has
the capacity to act autonomously but fails to so act in this circumstance. Depending on the context, we might be
able to correctly describe the act as that of placing trust in one’s physician and therefore as an act that
autonomously authorizes the physician to proceed. However, even if this claim is accurate, the act is not an
autonomous authorization of the procedure because this person lacks material information about the procedure.
Similarly, some persons who are generally incapable of autonomous decision making can at times make
autonomous choices. For example, some patients in mental institutions who cannot care for themselves and have
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been declared legally incompetent may still be competent to make some autonomous choices, such as stating
preferences for meals, refusing some medications, and making phone calls to acquaintances.
Split-level theories of autonomy. Some philosophers have presented an influential theory of autonomy that
requires having the capacity to reflectively control and identify with or oppose one’s basic (first-order) desires or
preferences through higher level (second-order) desires or preferences.4 Gerald Dworkin, for instance, offers a
“content-free” definition of autonomy as a “second-order capacity of persons to reflect critically upon their first-
order preferences, desires, wishes, and so forth and the capacity to accept or attempt to change these in the light
of higher-order preferences and values.”5 An example is an alcoholic who has a desire to drink but also has a
higher-order desire to stop drinking. A second example is an exceptionally dedicated physician who has a first-
order desire to work extraordinarily long hours in the hospital while also having a higher-order commitment to
spend all of her evening hours with her family. Whenever she wants to work late in the evening and does so, she
wants what she does not autonomously want, and therefore acts nonautonomously. Action from a first-order
desire that is not endorsed by a second-order volition is not autonomous and represents “animal” behavior.
Accordingly, in this theory an autonomous person is one who has the capacity to reflectively accept, identify
with, or repudiate a lower-order desire independent of others’ manipulations of that desire. This higher-order
capacity to accept or repudiate first-order preferences constitutes autonomy, and no person is autonomous
without this capacity.
This theory is problematic because nothing prevents a reflective acceptance, preference, or volition at the second
level from being caused by a strong first-order desire. That is, the individual’s second-level acceptance of a first-
order desire may be the causal result of an already formed structure of first-order preferences. Potent first-order
desires from a condition such as alcohol or opioid addiction are antithetical to autonomy and can cause second-
order desires. If second-order desires (decisions, volitions, etc.) are generated by first-order desires, then the
process of identifying with one desire rather than another does not distinguish autonomy from nonautonomy.
This theory needs more than a convincing account of second-order preferences and acceptable influences. It
needs a way for ordinary persons to qualify as deserving respect for their autonomous choices even when they
have not reflected on their preferences at a higher level. The theory also risks running afoul of the criterion of
coherence with the principle of respect for autonomy discussed throughout this chapter. If reflective
identification with one’s second-order desires or volitions is a necessary condition of autonomous action, then
many ordinary actions that are almost universally considered autonomous, such as cheating on one’s spouse
(when one truly wishes not to be such a person) or selecting tasty snack foods when grocery shopping (when one
has never reflected on one’s desires for snack foods), would be nonautonomous in this theory. A theory that
requires reflective identification and stable volitional patterns unduly narrows the scope of actions protected by
the principle of respect for autonomy.
Agnieszka Jaworska insightfully argues that choosing contrary to one’s professed, accepted, and stable values
need not constitute an abandonment of autonomy. For example, a patient might request a highly invasive
treatment at the end of life against his previous convictions about his best interests because he has come to a
conclusion that surprises him: He cares more about living a few extra days than he had thought he would.
Despite his long-standing and firm view that he would reject such invasive treatments, he now accepts them.
Jaworska’s example is common in medical contexts.6
Few decision makers and few choices would be autonomous if held to the standards of higher-order reflection
demanded by this split-level theory. It presents an aspirational ideal of autonomy rather than a theory of
autonomy suitable for decision making in health care and research. A theory should not be inconsistent with
pretheoretical assumptions implicit in the principle of respect for autonomy, and no theory of autonomy is
acceptable if it presents an ideal beyond the reach of competent choosers.
Our three-condition theory. Instead of an ideal theory of autonomy, our analysis focuses on nonideal conditions.
We analyze autonomous action in terms of normal choosers who act (1) intentionally, (2) with understanding,
and (3) without controlling influences that determine their action. This uncomplicated account is designed to be
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coherent with the premise that the everyday choices of generally competent persons are autonomous and to be
sufficient as an account of autonomy for biomedical ethics.
1. 1. Intentionality. Intentional actions require plans in the form of representations of the series of events
proposed for the execution of an action. For an act to be intentional it must correspond to the actor’s
conception of the act in question, although a planned outcome might not materialize as projected.7
Nothing about intentional acts rules out actions that an agent wishes he or she did not have to perform.
Our motivation often involves conflicting wants and desires, but this fact does not render an action less
than intentional or autonomous. Foreseen but undesired outcomes can be part of a coherent plan of
intentional action.
2. 2. Understanding. Understanding is the second condition of autonomous action. An action is not
autonomous if the actor does not adequately understand it. Conditions that limit understanding include
illness, irrationality, and immaturity. Deficiencies in a communication process also can hamper
understanding. An autonomous action needs only a substantial degree of understanding, not a full
understanding. To restrict adequate decision making by patients and research subjects to the ideal of fully
or completely autonomous decision making strips their acts of a meaningful place in the practical world,
where people’s actions are rarely, if ever, fully autonomous.
3. 3. Noncontrol. The third of the three conditions of autonomous action is that a person be free of controls
exerted either by external sources or by internal states that rob the person of self-directedness. Influence
and resistance to influence are basic concepts in this analysis. Not all influences exerted on another person
are controlling. Our analysis of noncontrol and voluntariness later in this chapter focuses on coercion and
manipulation as key categories of influence. We concentrate on external controlling influences—usually
influences of one person on another—but no less important to autonomy are internal influences on the
person, such as those caused by mental illness.
The first of the three conditions of autonomy—intentionality—is not a matter of degree: Acts are either
intentional or nonintentional. However, acts can satisfy the conditions of both understanding and absence of
controlling influence to a greater or lesser extent. For example, understanding can be more or less complete;
threats can be more or less severe; and mental illness can be more or less controlling. Children provide a good
example of the continuum from being in control to not being in control. In the early months of life children are
heavily controlled and display only limited ability to exercise control: They exhibit different degrees of
resistance to influence as they mature, and their capacity to take control and perform intentional actions, as well
as to understand, gradually increases.
Acts therefore can be autonomous by degrees, as a function of satisfying these two conditions of understanding
and voluntariness to different degrees. A continuum of both understanding and noncontrol runs from full
understanding and being entirely in control to total absence of relevant understanding and being fully controlled.
Cutoff points on these continua are required for the classification of an action as either autonomous or
nonautonomous. The lines between adequate and inadequate degrees of understanding and degrees of control
must be determined in light of specific objectives of decision making in a particular context such as deciding
about surgery, choosing a university to attend, and hiring a new employee.
Although the line between what is substantial and what is insubstantial may appear arbitrary, thresholds marking
substantially autonomous decisions can be appropriately set in light of specific objectives of decision making.
Patients and research subjects can achieve substantial autonomy in their decisions, just as substantially
autonomous choice occurs in other areas of life, such as selecting a diet. We need to formulate specific criteria
for substantial autonomy in particular contexts.
Autonomy, Authority, Community, and Relationships
Some theorists argue that autonomous action is incompatible with the authority of governments, religious
organizations, and other communities that prescribe behavior. They maintain that autonomous persons must act
on their own reasons and cannot submit to an authority or choose to be ruled by others without relinquishing
their autonomy.8 However, no fundamental inconsistency exists between autonomy and authority if individuals
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exercise their autonomy to choose to accept an institution, tradition, or community that they view as a legitimate
source of influence and direction.
Choosing to strictly follow the recommendations of a medical authority is a prime example. Other examples are
a Jehovah’s Witness who accepts the authority of that tradition and refuses a recommended blood transfusion or
a Roman Catholic who chooses against an abortion in deference to the authority of the church. That persons
share moral norms with authoritative institutions does not prevent these norms from being autonomously
accepted, even if the norms derive from traditions or from institutional authority. If a Jehovah’s Witness who
insists on adhering to the doctrines of his faith in refusing a blood transfusion is deemed nonautonomous on the
basis of his religious convictions, many of our choices based on our confidence in institutional authority will be
likewise deemed unworthy of respect. A theory of autonomy that makes such a demand is morally unacceptable.
We encounter many limitations of autonomous choice in medical contexts because of the patient’s dependent
condition and the medical professional’s authoritative position. On some occasions authority and autonomy are
not compatible, but this is not because the two concepts are incompatible. Conflict may arise because authority
has not been properly presented or accepted, as in certain forms of medical paternalism or when an undue
influence has been exerted.
Some critics of autonomy’s prominent role in biomedical ethics question what they deem to be a model of an
independent, rational will inattentive to emotions, communal life, social context, interdependence, reciprocity,
and the development of persons over time. They see such an account of autonomy as too narrowly focused on
the self as independent, atomistic, and rationally controlling. Some of these critics have sought to affirm
autonomy while interpreting it through relationships.9 This account of “relational autonomy” is motivated by the
conviction that persons’ identities and choices are generally shaped, for better or worse, through social
interactions and intersecting social determinants such as race, class, gender, ethnicity, and authority structures.10
We will address the challenges of relational autonomy through the ethical principles analyzed in Chapters 5
through 7. In our view, a relational conception of autonomy can be defensible if it does not neglect or obscure
the three conditions of autonomy we identified previously and will further analyze later in this chapter.
The Principle of Respect for Autonomy
To respect autonomous agents is to acknowledge their right to hold views, to make choices, and to take actions
based on their values and beliefs. Respect is shown through respectful action, not merely by a respectful
attitude. The principle of respect for autonomy requires more than noninterference in others’ personal affairs. In
some contexts it includes building up or maintaining others’ capacities for autonomous choice while helping to
allay fears and other conditions that destroy or disrupt autonomous action. Respect involves acknowledging the
value and decision-making rights of autonomous persons and enabling them to act autonomously, whereas
disrespect for autonomy involves attitudes and actions that ignore, insult, demean, or are inattentive to others’
rights of autonomous action.
The principle of respect for autonomy asserts a broad obligation that is free of exceptive clauses such as “We
must respect individuals’ views and rights except when their thoughts and actions seriously harm other persons.”
Exceptive conditions should appear in specifications of the principle, not in the principle itself. However, the
principle should be analyzed as containing both a negative obligation and a positive obligation. As a negative
obligation, the principle requires that autonomous actions not be subjected to controlling constraints by others.
As a positive obligation, the principle requires both respectful disclosures of information and other actions that
foster autonomous decision making. Respect for autonomy obligates professionals in health care and research
involving human subjects to disclose information, to probe for and ensure understanding and voluntariness, and
to foster adequate decision making. As some contemporary Kantians have appropriately pointed out, the moral
demand that we treat others as ends requires that we assist them in achieving their ends and foster their
capacities as agents, not merely that we avoid treating them solely as means to our ends.11
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These negative and positive sides of respect for autonomy support more specific moral rules, some of which
may also be justified, in part, by other moral principles discussed in this book. Examples of these rules include
the following:
1. 1. Tell the truth.
2. 2. Respect the privacy of others.
3. 3. Protect confidential information.
4. 4. Obtain consent for interventions with patients.
5. 5. When asked, help others make important decisions.
The principle of respect for autonomy and each of these rules has only prima facie standing, and competing
moral considerations sometimes override them. Examples include the following: If our autonomous choices
endanger the public health, potentially harm innocent others, or require a scarce resource for which no funds are
available, others can justifiably restrict our exercises of autonomy. The principle of respect for autonomy often
does not determine what, on balance, a person ought to be free to know or do or what counts as a valid
justification for constraining autonomy. For example, a patient with an inoperable, incurable carcinoma once
asked, “I don’t have cancer, do I?” The physician lied, saying, “You’re as good as you were ten years ago.” This
lie infringed the principle of respect for autonomy by denying the patient information he may have needed to
determine his future courses of action. Although the matter is controversial, such a lie might be justified by a
principle of beneficence if major benefits will flow to the patient. (For the justification of certain acts of
withholding the truth from patients, see our discussions of paternalism in Chapter 6 and veracity in Chapter 8.)
Obligations to respect autonomy do not extend to persons who cannot act in a sufficiently autonomous manner
and to those who cannot be rendered autonomous because they are immature, incapacitated, ignorant, coerced,
exploited, or the like. Infants, irrationally suicidal individuals, and drug-dependent patients are examples. This
standpoint does not presume that these individuals are not owed moral respect, often referred to as respect for
persons.12 In several of our chapters we show that these patients have a significant moral status (see Chapter 3)
that obligates us to protect them from harm-causing conditions and to supply medical benefits to them (see
Chapters 5–7).
The Alleged Triumph and Failure of Respect for Autonomy
Some writers lament the “triumph of autonomy” in American bioethics. They assert that autonomy’s proponents
sometimes disrespect patients by forcing them to make choices, even though many patients do not want to
receive information about their condition or to make decisions. Carl Schneider, for example, claims that stout
proponents of autonomy, whom he labels “autonomists,” concern themselves less with what patients do want
than with what they should want. He concludes that “while patients largely wish to be informed about their
medical circumstances, a substantial number of them [especially the elderly and the very sick] do not want to
make their own medical decisions, or perhaps even to participate in those decisions in any very significant
way.”13
A health professional’s duty of respect for autonomy correlates with the right of a patient or subject to choose,
but the patient or subject does not have a correlative duty to choose. Several empirical studies of the sort cited by
Schneider seem to misunderstand, as he does, how autonomous choice functions in a viable theory and how it
should function in clinical medicine. In one study, UCLA researchers examined the differences in the attitudes of
elderly subjects, sixty-five years old or older, from different ethnic backgrounds toward (1) disclosure of the
diagnosis and prognosis of a terminal illness, and (2) decision making at the end of life. The researchers
summarize their main findings, based on 800 subjects (200 from each ethnic group):
Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than
European Americans (87%) and African Americans (88%) to believe that a patient should be told
the diagnosis of metastatic cancer. Korean Americans (35%) and Mexican Americans (48%) were
less likely than African Americans (63%) and European Americans (69%) to believe that a patient
should be told of a terminal prognosis and less likely to believe that the patient should make
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decisions about the use of life-supporting technology (28% and 41% vs. 60% and 65%). Korean
Americans and Mexican Americans tended to believe that the family should make decisions about
the use of life support.
Investigators in this study stress that “belief in the ideal of patient autonomy is far from universal” (italics
added), and they contrast this ideal with a “family-centered model” focused on an individual’s web of
relationships and “the harmonious functioning of the family.”14 Nevertheless, the investigators conclude that
“physicians should ask their patients if they wish to receive information and make decisions or if they prefer that
their families handle such matters.” Far from abandoning or supplanting the moral demand that we respect
individual autonomy, their recommendation accepts the normative position that the choice is rightly the patient’s
or a designated surrogate’s. Even if the patient delegates the right to someone else, his or her choice to delegate
can be autonomous.
In a second study, this time of Navajo values and the disclosure of risk and medical prognoses, two researchers
sought to determine how health care providers “should approach the discussion of negative information with
Navajo patients” to provide “more culturally appropriate medical care.” Frequent conflicts emerge, these
researchers report, between autonomy and the traditional Navajo conception that “thought and language have the
power to shape reality and to control events.” In the traditional conception, telling a Navajo patient recently
diagnosed with a disease the potential complications of that disease could actually produce those complications,
because “language does not merely describe reality, language shapes reality.” Traditional Navajo patients may
process negative information as dangerous to them. They expect instead a “positive ritual language” that
promotes or restores health.
One middle-aged Navajo nurse reported that a surgeon explained the risks of bypass surgery to her father in such
a way that he refused to undergo the procedure: “The surgeon told him that he may not wake up, that this is the
risk of every surgery. For the surgeon it was very routine, but the way that my Dad received it, it was almost like
a death sentence, and he never consented to the surgery.” The researchers therefore found ethically troublesome
policies that attempt to “expose all hospitalized Navajo patients to the idea, if not the practice, of advance care
planning.”15
These two studies enrich our understanding of diverse cultural beliefs and values. However, these studies
sometimes misrepresent what the principle of respect for autonomy and related laws and policies require. They
view their results as opposing rather than, as we interpret them, enriching the principle of respect for autonomy.
A fundamental obligation exists to ensure that patients have the right to choose as well as the right to accept or
decline information. Forced information and forced choice are usually inconsistent with this obligation.
A tension exists between the two studies just discussed. One study recommends inquiring in advance to ascertain
patients’ preferences about information and decision making, whereas the other suggests, tenuously, that even
informing certain patients of a right to decide may cause harm. The practical question is whether it is possible to
inform patients of their rights to know and to decide without compromising their systems of belief and values or
otherwise disrespecting them by forcing them to learn or choose when a better form of communication could
avoid this outcome. Health professionals should almost always inquire about their patients’ wishes to receive
information and to make decisions and should not assume that because a patient belongs to a particular
community or culture, he or she affirms that community’s customary worldview and values. The main
requirement is to respect a particular patient’s or subject’s autonomous choices, whatever they may be. Respect
for autonomy is no mere ideal in health care; it is a professional obligation.
Complexities in Respecting Autonomy
Varieties of autonomous consent. Consent often grants permission for others to act in ways that are unjustifiable
without consent—for instance, engaging in sexual relations or performing surgery. However, when examining
autonomy and consent in this chapter, we do not presume that consent is either necessary or sufficient for certain
interventions to be justified. It is not always necessary in emergencies, in public health interventions, in research
involving anonymized data, and so forth; and it is not always sufficient because other ethical principles too must
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be satisfied. For example, research involving human subjects must pass a benefit-risk test and a fairness test in
the recruitment of participants.16
The basic paradigm of the exercise of autonomy in health care and in research is express or explicit consent (or
refusal), usually informed consent (or refusal).17 However, the informed consent paradigm captures only one
form of valid consent. Consent may also be implied, tacit, or presumed; and it may be general or specific.
Implicit (or implied) consent is inferable from actions. Consent to a medical procedure may be implicit in a
specific consent to another procedure, and providing general consent to treatment in a teaching hospital may
imply consent to various roles for physicians, nurses, and others in training. Another form is tacit consent, which
occurs silently or passively through omissions. For example, if the staff of a long-term care facility asks
residents whether they object to having the time of dinner changed by one hour, a uniform lack of objection
constitutes consent.
Presumed consent is subject to a variety of interpretations. It is a form of implicit consent if consent is presumed
on the basis of what is known about a particular person’s choices. In certain contexts, presumed consent is tacit
consent that gives good grounds for accepting the consent as valid. By contrast, presuming consent on the basis
of either a theory of human goods that are desirable or what a rational person would accept is morally perilous.
Consent should refer to an individual’s actual choices or known preferences, not to presumptions about the
choices the individual would or should make.
Different conceptions of consent have appeared in debates about teaching medical students how to perform
intimate examinations, especially pelvic and rectal examinations.18 Medical students have often learned and
practiced on anesthetized patients, some of whom have not given an explicit informed consent. For instance,
some teaching hospitals have allowed one or two medical students to participate in the examination of women
who are under anesthesia in preparation for surgery. Anesthetized patients have been considered ideal for
teaching medical students how to perform a pelvic examination because these patients are relaxed and would not
feel any mistakes. When questioned about this practice, some directors of obstetrics and gynecology programs
appealed to the patient’s general consent upon entering a teaching hospital. This consent typically authorizes
medical students and residents to participate in patients’ care for teaching and learning purposes. However, the
procedures that involve participation by medical students or other medical trainees are often not explicitly stated.
There are good ethical reasons to find general consent insufficient and, instead, to require specific informed
consent for such intimate examinations performed for educational or training purposes. Health professionals
usually—and rightly—seek specific informed consent when a procedure is invasive, as in surgery, or when it is
risky. Although pelvic examinations are not invasive or risky by comparison to surgery, patients may object to
these intrusions into their bodies, especially for purposes of education and training. When asked, many women
consent to the participation of medical students in such examinations, but other women view the practice as a
violation of their dignity and privacy.19 One commentator appropriately maintains that “the patient must be
treated as the student’s teacher, not as a training tool.”20
Using anesthetized women who have given only a general consent may be efficient in clinical training, but, in
view of the importance of respect for autonomy, it is ethically required, instead, to use only anesthetized patients
who have given specific informed consent or healthy volunteers willing to serve as standardized patients. Both
alternatives respect personal autonomy, avoid an inappropriate form of medical education, and are workable.21
The practice of conducting pelvic exams on anesthetized patients without their specific informed consent also
may have a negative impact on clinicians’ attitudes toward the importance of informed consent and, by
implication, toward respect for autonomy. According to a study of medical students in the Philadelphia area, this
practice desensitized physicians to the need for patients to give their consent before these and presumably other
procedures. For students who had finished an obstetrics/gynecology clerkship, which involved this practice,
consent was significantly less important (51%) than for students who had not completed a clerkship (70%). The
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authors conclude that “to avoid this decline in attitudes toward seeking consent, clerkship directors should
ensure that students perform examinations only after patients have given consent explicitly.”22
Nonexpress forms of consent have been considered and sometimes adopted in different contexts. In late 2006,
the US Centers for Disease Control and Prevention (CDC) changed its recommendations about HIV testing and
screening for patients in health care settings in which various other diagnostic and screening tests are routinely
performed.23 (Here “diagnostic testing” refers to testing people with clinical signs or symptoms that could
indicate HIV infection, while “screening” refers to testing everyone in a certain population.) The policies then in
effect, and often embodied in state laws, require specific informed consent, usually in written form, for HIV
testing, frequently accompanied by pre-test and post-test counseling. These policies reflected public concerns
that had surrounded HIV testing from its beginning in 1985, particularly concerns about the psychosocial risks
of stigmatization and discrimination as a result of a positive test. Because of these concerns, testing for HIV was
treated differently than testing for other medical conditions, especially those with public health ramifications.
Hence, policies at the time required specific disclosure of information and a decision, expressed on a written
form, to accept or refuse testing.
The 2006 CDC recommendations moved away from specific written informed consent, accompanied by
counseling. In the health care context, the diagnostic testing of patients, in light of clinical signs or symptoms,
was justified under implicit consent to medical care, while the screening of all persons ages thirteen to sixty-
four, without clinical signs or symptoms of HIV infection, was justified if they were notified that the test would
be performed and then given the opportunity to decline. This shift indicated that HIV and AIDS would no longer
be treated as exceptions to conventional medical care and to conventional public health measures.24 The CDC
justified its new recommendations primarily on two grounds. First, because HIV and AIDS are chronic
conditions that can be effectively treated through anti-retroviral therapies (ARTs), although not cured in the
sense of totally and permanently eradicating the virus, the new screening approach would enable more people
who are infected to take advantage of available ARTs that could significantly extend their lives at a higher
quality. Second, the information gained from screening could enable persons who are infected with HIV to take
steps to protect their sex partners or drug-use partners from infection. The CDC estimated that in 2015 over 1.1
million people in the United States were HIV-infected and that one in seven, or approximately 157,000
individuals, were not aware of their infection.25 Studies after the 2006 recommendations established that treating
individuals to reduce their viral load (the concentration of HIV in blood) to undetectable levels can dramatically
reduce the risk of spreading HIV infection to sexual or drug-sharing partners.26 Hence, a slogan arose: “HIV
treatment as prevention.”27
The CDC’s changed recommendations did not eliminate patient autonomy in health care settings—individuals
could still refuse testing—but, by shifting the default from “opt in” to “opt out,” the CDC anticipated that more
people previously unaware of their HIV infection would be tested and would gain knowledge that could benefit
them and others. Despite these potential benefits, critics warned that in the absence of a requirement for explicit,
written informed consent, compromises of autonomy were inevitable in the “opt-out” policy. According to one
AIDS activist, “This is not informed consent, and it is not even consent, [but rather an attempt] to ram HIV
testing down people’s throats without their permission.”28
In our judgment, this “opt-out” approach, undertaken within CDC guidelines, was and remains justifiable as a
way to increase HIV testing without infringing personal autonomy. A strong consensus developed around this
approach: By early 2018, all states in the United States had changed their laws regarding HIV testing in medical
contexts from “opt-in,” through specific, written informed consent, to “opt out.”29
Another context in which an opt-out approach, sometimes called presumed or tacit consent, could be justified is
organ donation from deceased individuals. In the opt-in system in the United States, deceased organ donation
requires express, explicit consent, whether by an individual while alive or by the next of kin after his or her
death. The information disclosed for the individual’s consent is usually limited—for instance, in a cursory
exchange when obtaining a license to operate an automobile—but this disclosure is arguably adequate for
purposes of postmortem organ donation. In view of the huge gap between the number of organs donated each
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year and the number of patients awaiting a transplant, many propose that the United States adopt an opt-out
model for organ removal from deceased persons, as several European countries have done. This model shifts the
default so that an individual’s silence, or nonregistration of dissent, counts as consent, but is such a policy of
presumed or tacit consent ethically acceptable?
To be ethically justifiable, such a policy would require vigorous efforts to ensure the public’s understanding of
the options they face as individuals, as well as a clear, reliable, simple, and nonburdensome mechanism to use to
opt out. While accepted in many countries in Europe, an opt-out policy has not yet gained traction in the United
States, perhaps because of strong currents of rights of autonomous choice and distrust. Even if it were adopted in
the United States, it probably would not increase the number of organs for transplantation overall because,
according to survey data, too many citizens would opt out; and opting out would prevent postmortem familial
donations, which now provide a large number of transplantable organs when deceased persons have not
previously expressed their preferences.30
Consents and refusals over time. Beliefs and choices shift over time. Ethical and interpretive problems arise
when a person’s present choices contradict his or her previous choices, which, in some cases, he or she explicitly
designed to prevent possible future changes of mind from affecting an outcome. In one case, a twenty-eight-
year-old man decided to terminate chronic renal dialysis because of his restricted lifestyle and the burdens his
medical conditions imposed on his family. He had diabetes, was legally blind, and could not walk because of
progressive neuropathy. His wife and physician agreed to provide medication to relieve his pain and further
agreed not to return him to dialysis even if he requested it under the influence of pain or other bodily changes.
(Increased amounts of urea in the blood, which result from kidney failure, can sometimes lead to altered mental
states, for example.) While dying in the hospital, the patient awoke complaining of pain and asked to be put back
on dialysis. The patient’s wife and physician decided to act on the patient’s earlier request not to intervene, and
he died four hours later.31
Their decision was understandable, but respect for autonomy suggests that the spouse and physician should have
put the patient back on dialysis to flush the urea out of his bloodstream and then determine if he had
autonomously revoked his prior choice. If the patient later indicated that he had not revoked his prior choice, he
could have refused again, thereby providing the caregivers with increased assurance about his autonomous
preferences.
In shifts over time the key question is whether people are autonomously revoking their prior decisions.
Discerning whether current decisions are autonomous will depend, in part, on whether they are in character or
out of character. Out-of-character actions can raise caution flags that warn others to seek explanations and to
probe more deeply into whether the actions are autonomous, but they may turn out to be autonomous. Actions
are more likely to be substantially autonomous if they are in character—for example, when a committed
Jehovah’s Witness refuses a blood transfusion—but acting in character does not necessarily indicate an
autonomous action. How, then, are we to determine whether decisions and actions are autonomous?
THE CAPACITY FOR AUTONOMOUS CHOICE
Many patients and potential research subjects are not competent to give a valid consent or refusal. Inquiries
about competence focus on whether these persons are capable—cognitively, psychologically, and legally—of
adequate decision making. Several commentators distinguish judgments of capacity from judgments of
competence on the grounds that health professionals assess capacity and incapacity, whereas courts determine
competence and incompetence. However, this distinction breaks down in practice, and we will not rely on it.
When clinicians judge that patients lack decision-making capacity, the practical effects of these judgments in a
medical context may not differ significantly from those of a legal determination of incompetence.32
The Gatekeeping Function of Competence Judgments
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Competence or capacity judgments in health care serve a gatekeeping role by distinguishing persons whose
decisions should be solicited or accepted from persons whose decisions need not or should not be solicited or
accepted. Health professionals’ judgments of a person’s incompetence may lead them to override that person’s
decisions, to turn to informal or formal surrogates for decision making, to ask a court to appoint a guardian to
protect his or her interests, or to seek that person’s involuntary institutionalization. When a court establishes
legal incompetence, it appoints a surrogate decision maker with either partial or plenary (full) authority over the
incompetent individual.
Competence judgments have the distinctive normative function of qualifying or disqualifying persons for certain
decisions or actions, but those in control sometimes incorrectly present these competence judgments as
empirical. For example, a person who appears irrational or unreasonable to others might fail a psychiatric test,
and as a result be declared incompetent. The test is an empirical measuring device, but normative judgments
establish how the test should be used to sort persons into the two classes of competent and incompetent, which
determines how persons ought to be, or may permissibly be, treated.
The Concept of Competence
Some commentators hold that we lack both a single acceptable definition of competence and a single acceptable
standard of competence. They also contend that no nonarbitrary test exists to distinguish between competent and
incompetent persons. We will engage these issues by distinguishing between definitions, standards, and tests—
focusing first on problems of definition.33
A single core meaning of the word competence applies in all contexts. That meaning is “the ability to perform a
task.”34 By contrast to this core meaning, the criteria of particular competencies vary from context to context
because the criteria are relative to specific tasks. The criteria for someone’s competence to stand trial, to raise
dachshunds, to answer a physician’s questions, and to lecture to medical students are radically different. Rarely
should we judge a person as globally incompetent, that is, incompetent with respect to every sphere of life. We
usually need to consider only some type of competence, such as the competence to decide about treatment or
about participation in research. These judgments of competence and incompetence affect only a limited range of
decision making. A person incompetent to decide about financial affairs may be competent to decide whether to
participate in medical research.
Competence may vary over time and may be intermittent. Many persons are incompetent to do something at one
point in time but competent to perform the same task at another point in time. Judgments of competence about
such persons can be complicated by the need to distinguish categories of illness that result in chronic changes of
intellect, language, or memory from those characterized by rapid reversibility of these functions, as in the case
of transient ischemic attack (TIA) or transient global amnesia (TGA). In some of the latter cases competence
varies from hour to hour, and determination of a specific incompetence may prevent vague generalizations that
exclude these persons from all forms of decision making.
These conceptual distinctions have practical significance. The law has traditionally presumed that a person
incompetent to manage his or her estate is also incompetent to vote, make medical decisions, get married, and
the like. The global sweep of these laws, based on a total judgment of the person, at times has extended too far.
In a classic case, a physician argued that a patient was incompetent to make decisions because of epilepsy,35
although many persons who suffer from epilepsy are competent to make decisions in numerous contexts. Such
judgments defy much that we now know about the etiology of various forms of incompetence, even in hard
cases involving persons with cognitive disabilities, with psychosis, or with uncontrollably painful afflictions.
Persons who are incompetent by virtue of dementia, alcoholism, immaturity, or cognitive disabilities present
very different types and problems of incompetence.
Sometimes a competent person who ordinarily can select appropriate means to reach his or her goals will act
incompetently. Consider the following actual case of a hospitalized patient who has an acute disc problem and
whose goal is to control back pain. The patient has decided to manage the problem by wearing a brace, a method
she had used successfully in the past. She believes strongly that she should return to this treatment modality.
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This approach conflicts, however, with her physician’s unwavering and near-insistent advocacy of surgery.
When the physician, an eminent surgeon who alone in her city is suited to treat the patient, asks her to sign the
surgical permit, she is psychologically unable to refuse. Her illness increases both her hopes and her fears, and,
in addition, she has a deferential personality. In these circumstances, it is psychologically too risky for her to act
as she prefers. Even though she is competent to choose in general and has stated her preference, she is not
competent to choose on this occasion.
This case indicates how close the concept of competence in decision making is to the concept of both autonomy
and the principle of respect for autonomy. Patients or prospective subjects are competent to make a decision if
they have the capacity to understand the material information, to make a judgment about this information in light
of their values, to intend a certain outcome, and to communicate freely their wishes to caregivers or
investigators. Although autonomy and competence differ in meaning (autonomy meaning self-governance;
competence meaning the ability to perform a task or range of tasks), the criteria of the autonomous person and of
the competent person are strikingly similar.
Persons are more and less able to perform a specific task to the extent they possess a certain level or range of
abilities, just as persons are more and less intelligent or athletic. For example, in the emergency room an
experienced and knowledgeable patient is likely to be more qualified to consent to or refuse a procedure than a
frightened, inexperienced patient. It would be confusing to view this continuum of abilities in terms of degrees
of competency. For practical and policy reasons, we need threshold levels below which a person with a certain
level of abilities for a particular task is incompetent. Where we draw the line depends on the particular tasks
involved.36
Standards of Competence
Questions in medicine about competence often center on the standards for its determination, that is, the
conditions a judgment of competence—and especially incompetence—must satisfy. Standards of competence
feature mental skills or capacities closely connected to the attributes of autonomous persons, such as cognitive
skills and independent judgment. In criminal law, civil law, and clinical medicine, standards for competence
cluster around various abilities to comprehend and process information and to reason about the consequences of
one’s actions. In medical contexts, physicians often consider a person competent if he or she can understand a
procedure, deliberate with regard to its major risks and benefits, and make a decision in light of this deliberation.
The following case illustrates some difficulties encountered in attempts to judge competence. A man who
generally exhibits normal behavior patterns is involuntarily committed to a mental institution as the result of the
bizarre self-destructive behavior of pulling out an eye and cutting off a hand. This behavior results from his
unusual religious beliefs. The institution judges him incompetent, despite his generally competent behavior and
despite the fact that his peculiar actions coherently follow from his religious beliefs.37 This troublesome case is
not one of intermittent competence. Analysis in terms of limited competence at first appears plausible, but this
analysis perilously suggests that persons with unorthodox or bizarre religious beliefs are less than competent,
even if they reason coherently in light of their beliefs. This policy would not be ethically acceptable unless
specific and carefully formulated statements spelled out the reasons under which a finding of incompetence is
justified.
Rival standards of incompetence. We are focusing on standards of incompetence, rather than competence,
because of the legal, medical, and practical presumption that an adult is competent and should be treated as such
in the absence of a determination of incompetence or incapacity. In the clinical context, an inquiry into a
patient’s competence to make decisions usually occurs only when the medical decision at stake is complex and
involves significant risks or when the patient does not accept the physician’s recommendation.38 The following
schema expresses the range of inabilities required under competing standards of incompetence currently
presented in literature on the subject.39
1. 1. Inability to express or communicate a preference or choice
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2. 2. Inability to understand one’s situation and its consequences
3. 3. Inability to understand relevant information
4. 4. Inability to give a reason
5. 5. Inability to give a rational reason (although some supporting reasons may be given)
6. 6. Inability to give risk/benefit-related reasons (although some rational supporting reasons may be given)
7. 7. Inability to reach a reasonable decision (as judged, for example, by a reasonable person standard)
These standards cluster around three kinds of abilities or skills. Standard 1 looks for the ability to formulate a
preference, which is an elementary standard. Standards 2 and 3 probe for abilities to understand information and
to appreciate one’s situation. Standards 4 through 7 concentrate on the ability to reason through a consequential
life decision. These standards have been widely used, either alone or in combination, to determine incompetence
in medical contexts.
Testing for incompetence. A clinical need exists to turn one or more of these general standards into an
operational test of incompetence that establishes passing and failing evaluations. Dementia rating scales, mental
status exams, and similar devices test for factors such as time-and-place orientation, memory, understanding, and
coherence.40 Although these clinical assessments are empirical tests, normative judgments underlie each test.
The following three ingredients incorporate normative judgments:41
1. 1. Choosing the relevant set of abilities for competence
2. 2. Choosing a threshold level of the abilities in item 1
3. 3. Choosing empirical tests for item 2
For any test already accepted under item 3, it is an empirical question whether someone possesses the requisite
level of abilities, but this empirical question can only be addressed if normative criteria have already been fixed
under items 1 and 2. Institutional rules or traditions usually establish these criteria, but the standards should be
open to periodic review and modification.42
The sliding-scale strategy. Some writers offer a sliding-scale strategy for how to realize the goals of competence
determinations. They argue that as the risks of a medical intervention increase for patients, so should the level of
ability required for a judgment of competence to elect or refuse the intervention. As the consequences for well-
being become less substantial, we should lower the level of capacity required for competence. For example,
Grisso and Appelbaum present a “competence balance scale.” An autonomy cup is suspended from the end of
one arm of a measuring scale, and a protection cup is suspended from the other; the fulcrum is set initially to
give more weight to the autonomy cup. The balancing judgment depends “on the balance of (1) the patient’s
mental abilities in the face of the decisional demands, weighed against (2) the probable gain-risk status of the
patient’s treatment choice.”43 If a serious risk such as death is present, then a correspondingly stringent standard
of competence should be used; if a low or insignificant risk is present, then a relaxed or lower standard of
competence is permissible. Thus, the same person—a child, for example—might be competent to decide
whether to take a tranquilizer but incompetent to decide whether to authorize surgery.44
This sliding-scale strategy is attractive. A decision about which standard to use to determine competence
depends on several factors that are risk-related. The sliding-scale strategy rightly recognizes that our interests in
ensuring good outcomes legitimately contribute to the way we create and apply standards. If the consequences
for welfare are grave, the need to certify that the patient possesses the requisite capacities increases; but if little
in the way of welfare is at stake, we can lower the level of capacity required for decision making.
Although the sliding-scale strategy may function as a valuable protective device, it creates confusion regarding
the nature of both competence judgments and competence itself because of certain conceptual and moral
difficulties. This strategy suggests that a person’s competence to decide is contingent on the decision’s
importance or on some harm that might follow from the decision. This thesis is dubious: A person’s competence
to decide whether, for example, to participate in cancer research does not depend on the decision’s
consequences. As risks increase or decrease, we can legitimately increase or reduce the rules, procedures, or
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measures we use to ascertain whether someone is competent; but in formulating what we are doing, we need to
distinguish between a person’s competence and the modes of ascertaining that person’s competence.
Leading proponents of the sliding-scale strategy hold the view that competence itself varies with risk. For
example, according to Allen Buchanan and Dan Brock, “Because the appropriate level of competence properly
required for a particular decision must be adjusted to the consequences of acting on that decision, no single
standard of decision-making competence is adequate. Instead, the level of competence appropriately required for
decision making varies along a full range from low/minimum to high/maximal.”45
This account is conceptually and morally perilous. It is correct to say that the level of a person’s capacity to
decide will rise as the complexity or difficulty of a task increases (for example, deciding about spinal fusion by
contrast to deciding whether to take a minor tranquilizer), but the level of competence to decide does not rise as
the risk of an outcome increases. It is confusing and misleading to blend a decision’s complexity or difficulty
with the risk at stake. No basis exists for believing that risky decisions require more ability at decision making
than less risky decisions.
We can sidestep these problems by recognizing that the level of evidence for determining competence often
should vary according to risk. As examples, some statutes have required a higher standard of evidence of
competence in making than in revoking advance directives, and the National Bioethics Advisory Commission
(NBAC) recommended a higher standard of evidence for determinations of competence to consent to participate
in most research by contrast to competence to object to participation.46 These are counsels of prudence that
stand to protect patient-subjects.
In short, whereas Buchanan and Brock propose that the level of decision-making competence itself be placed on
a sliding scale from low to high in accordance with risk, we recommend placing the required standards of
evidence for determining decision-making competence on a sliding scale.
THE MEANING AND JUSTIFICATION OF INFORMED CONSENT
Roughly since the Nuremberg trials, which exposed the Nazis’ horrific medical experiments, ethics in medicine
and in research has increasingly placed consent at the forefront of its concerns. The term informed consent did
not appear until a decade after these trials (held in the late 1940s) and did not begin to receive detailed
examination until the early 1970s. Over time the physician’s or researcher’s obligation to disclose information
shifted significantly to the quality of a patient’s or subject’s understanding and consent. The forces behind this
shift of emphasis were often autonomy driven. In this section, we treat moral problems of informed consent as
they have emerged in clinical ethics, research ethics, case law, changes in the patient-physician relationship,
ethics-review committees, and moral and legal theory.47
The Justification of Informed Consent Requirements
Virtually all prominent medical and research codes and institutional rules of ethics now state that physicians and
investigators must obtain the informed consent of patients and subjects prior to a substantial intervention.
Throughout the early history of concern about research subjects, consent requirements were proposed primarily
as a way to minimize the potential for harm. However, since the mid-1970s the primary justification of
requirements of informed consent has been to protect autonomous choice, a goal that institutions often include in
broad statements about protecting the rights of patients and research subjects.
To say that the primary justification of informed consent requirements is the protection of autonomy is not to say
that the only major function of the doctrine and institutions of informed consent is to respect autonomy. As Neal
Dickert and coauthors have argued, there may be several distinct functions, including (1) providing
transparency; (2) allowing control and authorization; (3) promoting concordance with participants’ values; (4)
protecting and promoting welfare interests; (5) promoting trust; (6) satisfying regulatory requirements; and (7)
promoting integrity in research. These authors hold that “the standard view in research ethics [the “standard
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view” being what these authors apparently think is our position] is that the function of informed consent is to
respect individual autonomy,” which they contend is an unduly narrow conception. We agree that there are
multiple functions of informed consent, including their list of seven, although their list of major functions
surprisingly omits protection of autonomy. They also judge that in the standard view—presumably our view—
there is an “assumption that individual autonomy alone can account for the ethical importance of consent.” But
we do not hold this view. It is crucial to carefully distinguish justification and function. Holding that the
justification of requirements of informed consent is grounded in the principle of respect for autonomy is
compatible with recognizing several different functions of informed consent requirements.48
In a series of books and articles on informed consent and autonomy, Onora O’Neill has argued against the view
that informed consent is justified in terms of respect for personal autonomy.49 O’Neill is suspicious of
contemporary conceptions of autonomy and respect for autonomy, which she finds variable, vague, and difficult
to tailor to acceptable requirements of informed consent. She argues that practices and rituals of informed
consent are best understood as ways to prevent deception and coercion; the process of informed consent
provides reasonable assurance that a patient, subject, or tissue donor “has not been deceived or coerced.”50
However, respect for autonomy (and rules of informed consent in health care relationships) requires more than
avoiding deception and coercion. It requires an attempt to respect persons’ rights to information, improve
communication, instill relevant understanding, and avoid forms of manipulation that are not limited to deception
and coercion.
The Definition and Elements of Informed Consent
Some commentators have attempted to analyze the idea of informed consent in terms of shared decision making
between doctor and patient, thus rendering informed consent and mutual decision making synonymous.51
However, informed consent should not be equated with shared decision making. Professionals obtain and will
continue to obtain informed consent in many contexts of research and medicine for which shared decision
making is a deficient model. We should distinguish (1) informational exchanges and communication processes
through which patients and subjects come to elect interventions, often based on medical advice, from (2) acts of
approving and authorizing those interventions. Approval and authorization belong to the patient, not to a
physician or research investigator, even when extensive shared dialogue has occurred. Shared decision making
may appear to be a worthy ideal in some areas of medicine, but the proposed model of sharing decisions is vague
and potentially misleading. It cannot be understood as a division of labor, with the clinician deciding A and the
patient deciding B. If, alternatively, it is understood as an effort to reach a “joint decision,” this position
downplays the patient’s fundamental ethical and legal right to know and decide.52 Approving and authorizing
are not shared in an appropriate model of informed consent, however much a patient or subject may be
influenced by a physician or other health care professionals. In short, this model neither defines nor displaces
informed consent; nor does it appropriately implement the principle of respect for autonomy.53 If shared
decision making is presented only as a plea for patients to be allowed to participate in decision making about
diagnostic and treatment procedures, it continues the legacy of medical paternalism by ignoring patients’ rights
to consent to and authorize or decline those procedures.
Two meanings of “informed consent.” Two different senses of “informed consent” appear in current literature,
policies, and practices.54 In the first sense, informed consent is analyzable through the account of autonomous
choice presented earlier in this chapter: An informed consent is an individual’s autonomous authorization of a
medical intervention or of participation in research. In this first sense, a person must do more than express
agreement or comply with a proposal. He or she must authorize something through an act of informed and
voluntary consent. In an early and classic case, Mohr v. Williams (1905), a physician obtained Anna Mohr’s
consent to an operation on her right ear. While operating, the surgeon determined that in fact the left ear needed
the surgery. A court found that the physician should have obtained the patient’s consent to the surgery on the left
ear: “If a physician advises a patient to submit to a particular operation, and the patient weighs the dangers and
risks incident to its performance, and finally consents, the patient thereby, in effect, enters into a contract
authorizing the physician to operate to the extent of the consent given, but no further.”55 An informed consent in
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this first sense occurs if and only if a patient or subject, with substantial understanding and in absence of
substantial control by others, intentionally authorizes a professional to do something that is specifically
mentioned in the consent agreement.
In the second sense, informed consent refers to conformity to the social rules of consent that require
professionals to obtain legally or institutionally valid consent from patients or subjects before proceeding with
diagnostic, therapeutic, or research procedures. Informed consents are not necessarily autonomous acts under
these rules and sometimes are not even worded as authorizations. Informed consent here refers to an
institutionally or legally effective permission, as determined by prevailing social rules. For example, a mature
minor may autonomously authorize an intervention, but the minor’s authorization may not be an effective
consent under existing legal or institutional rules. Thus, a patient or subject might autonomously authorize an
intervention, and so give an informed consent in the first sense, without effectively authorizing the intervention
(because of the operative set of rules), and thus without giving an informed consent in the second sense.
Institutional rules of informed consent in law and medicine have frequently not been assessed by the demanding
standard of autonomous authorization. As a result, institutions, as well as laws and court decisions, sometimes
impose on physicians and hospitals nothing more than an obligation to warn of risks of proposed interventions.
“Consent” under these circumstances is not bona fide informed consent in the first sense. The problem arises
from the gap between the two senses of informed consent: Physicians who obtain consent under institutional
criteria can and often do fail to meet the more rigorous standards of the autonomy-based model.
It is easy to criticize these often lax institutional rules as superficial, but health care professionals cannot
reasonably be expected in all circumstances to obtain a consent that satisfies the conditions of highly demanding
autonomy-protective rules. Autonomy-protective rules may turn out to be excessively difficult or even
impossible to implement in some circumstances. We should evaluate institutional rules in terms of both respect
for autonomy and the probable consequences of imposing burdensome requirements on institutions and
professionals. Policies may legitimately take account of what is fair and reasonable to require of health care
professionals and researchers. Nevertheless, we take as axiomatic that the model of autonomous choice—
following the first sense of “informed consent”—ought to serve as the benchmark for the moral adequacy of
institutional rules of consent.
Franklin Miller and Alan Wertheimer challenge our view that the first sense of “informed consent” is the
benchmark for judging the moral adequacy of institutional understandings and rules of informed consent. They
propose a “fair transaction model” of the doctrine of informed consent in which, for example, investigators and
their subjects are all treated fairly by giving due consideration to (1) the reasonable limits of an investigator’s
responsibilities to ensure adequate understanding on the part of subjects who consent to research, (2) the modest
levels of comprehension expectable of some subjects, and (3) the overall interests of subjects in participating in
research.
We welcome this approach as a reasonable way to think about our second sense of informed consent, but the
Miller-Wertheimer theory moves into unacceptably dangerous territory by altogether, and by design, abandoning
the first sense of autonomous authorization and substituting the “fair transaction” model. Their model would be
more suitable if it were presented as an explication of our second sense of “informed consent” and as a fairness-
based analysis of requirements for many practical contexts in which informed consent is obtained. However, as
their theory stands, these authors give a priority to fairness to all parties that loses sight of the central role of
respect for the subject’s or patient’s autonomy. We see no justification for their claims that their model merits
adoption “in place of the autonomous authorization model” and that “consent is a bilateral transaction,” rather
than the “one-sided focus on the quality of the subject’s consent” to which the autonomous authorization model
is committed. Bilateral transactions of informational exchange often appropriately occur in consent contexts, but
genuine informed consent is not reducible to such transactions.56
The elements of informed consent. Some commentators have attempted to define informed consent by
specifying the essential elements (that is, components) of the concept, in particular by dividing the elements into
a set of information components and a set of consent components, and then dividing these components into
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subcomponents. The information component refers to the disclosure, and often the comprehension, of
information. The consent component refers to both a voluntary decision and an authorization to proceed. Legal,
regulatory, philosophical, medical, and psychological literatures generally favor the following elements as the
components of informed consent:57 (1) competence (capacity or ability), (2) disclosure, (3) understanding
(comprehension), (4) voluntariness, and (5) consent. Some writers present these elements as the building blocks
of a definition of informed consent such as the following: A person gives an informed consent to an intervention
if (and perhaps only if) he or she is competent to act, receives a thorough disclosure, comprehends the
disclosure, acts voluntarily, and consents to the intervention.
This five-element definition is far superior to the single-element definition of disclosure that courts and medical
literature have often relied on.58 However, in this chapter we defend and explicate each of the following seven
elements as the components of informed consent:
1. I. Threshold elements (preconditions)
1. 1. Competence (ability to understand and decide)
2. 2. Voluntariness (in deciding)
2. II. Information elements
1. 3. Disclosure (of material information)
2. 4. Recommendation (of a plan)
3. 5. Understanding (of 3 and 4)
3. III. Consent elements
1. 6. Decision (in favor of a plan)
2. 7. Authorization (of the chosen plan)
This list requires explanation. First, an informed refusal entails a modification of items under III, thereby turning
the categories into refusal elements, for example, “6. Decision (against a plan).” Whenever we use the
expression “informed consent,” we allow for the possibility of an informed refusal. Second, providing
information for potential participants in research does not necessarily involve making a recommendation to the
potential participants (number 4), although this component is often the most important from the patient’s
perspective. Third, competence is perhaps best classified as a presupposition of obtaining informed consent,
rather than as an element.
Having previously examined competence as decision-making capacity, we concentrate in the next three sections
on the crucial elements of disclosure, understanding, and voluntariness. These key conditions of informed
consent have typically been presumed to be the essential conceptual (and perhaps definitional) conditions of
informed consent, but they can also be viewed as the essential moral conditions of a valid consent. As Alexander
Capron has appropriately formulated this point, these conditions can be viewed as “the substantive features of
[morally] valid informed consent.”59
DISCLOSURE
Disclosure is the third of the seven elements of informed consent. Some institutions and legal authorities have
presented the obligation to disclose information to patients as the sole major condition of informed consent. The
legal doctrine of informed consent in the United States from the outset focused primarily, sometimes exclusively,
on disclosure because it seemed obvious that physicians must provide sufficient information for a patient to
reach a decision and because physicians have an obligation to exercise reasonable care in providing information.
Civil litigation has emerged over informed consent because of injuries, measured in terms of monetary damages,
that physicians intentionally or negligently have caused by failures to disclose. The term informed consent was
born in this legal context. However, from the moral viewpoint, informed consent in general has rather little to do
with the liability of professionals as agents of disclosure and everything to do with the informed choices of
patients and subjects.
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Nonetheless, disclosure usually does play a pivotal role in the consent process. Absent professionals’ provision
of information, many patients and subjects will have an insufficient basis for decision making. Professionals are
usually obligated to disclose in reasonably nontechnical language a core body of information, including (1) those
facts or descriptions that patients or subjects consider material when deciding whether to refuse or consent to a
proposed intervention or involvement in research, (2) information the professional believes to be material, (3)
the professional’s recommendation (if any), (4) the purpose of seeking consent, and (5) the nature and limits of
consent as an act of authorization. If research is involved, disclosures usually should cover the aims and methods
of the research, anticipated benefits and risks, any anticipated inconvenience or discomfort, and the subjects’
right to withdraw, without penalty, from the research.
This list of basic information could be considerably expanded. For example, in one controversial decision, the
California Supreme Court held that, when seeking an informed consent, “a physician must disclose personal
interests unrelated to the patient’s health, whether research or economic, that may affect the physician’s
professional judgment.”60 Such a disclosure requirement has acquired increased moral significance as conflicts
of interest have become more pronounced and problematic. This subject is examined in Chapter 8.
Standards of Disclosure
Courts have struggled to determine which norms should govern the disclosure of information. Two competing
standards of disclosure have become most prominent in the United States: the professional practice standard and
the reasonable person standard. A third, the subjective standard, has received some support, although courts have
usually avoided it. These standards are morally, not merely legally, important.
The professional practice standard. The first standard holds that a professional community’s customary practices
determine the adequacy of a disclosure. That is, professional custom establishes the amount and type of
information to be disclosed. Disclosure, like treatment, is a responsibility of physicians because of their
professional expertise and commitment to the patient’s welfare. Accordingly, only expert testimony from
members of this profession can count as evidence that a physician violated a patient’s right to information.
Several difficulties plague this standard, which some call a reasonable doctor standard because it requires
physicians to disclose what any reasonable medical practitioner would disclose in similar cases. First, it is
uncertain in many situations whether a customary standard actually exists for the communication of information
in medicine. Second, if custom alone were conclusive, pervasive negligence could be perpetuated with impunity.
The majority of professionals could offer the same inadequate level of information. Third, based on empirical
studies, it is questionable whether many physicians have developed the skills to determine the information that
serves their patients’ best interests.61 The weighing of risks in the context of a person’s subjective beliefs, fears,
and hopes is not an expert skill, and information provided to patients and subjects sometimes needs to be freed
from the entrenched values and goals of medical professionals. Finally, the professional practice standard
ignores and may subvert patients’ rights of autonomous choice. Professional standards in medicine are fashioned
for medical judgments, but final decisions for or against medical interventions are nonmedical decisions that
belong solely to the patient.
The reasonable person standard. Despite the adoption of the traditional professional practice standard in many
legal jurisdictions, a reasonable person standard has gained acceptance in many states in the United States.
According to this standard, the information to be disclosed should be determined by reference to a hypothetical
reasonable person. Whether information is pertinent or material is to be measured by the significance a
reasonable person would attach to it in deciding whether to undergo a procedure. Under this standard the
authoritative determination of informational needs shifts from the physician to the patient, and physicians may
be found guilty of negligent disclosures even if their behavior conforms to recognized professional practice.
Whatever its merits, the reasonable person standard presents conceptual, moral, and practical difficulties.
Unclarities surround the concepts of “material information” and “reasonable person,” and questions arise about
whether and how physicians and other health care professionals can employ the reasonable person standard in
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practice. Its abstract and hypothetical character makes it difficult for physicians to use because they must project
by hypothesis what a reasonable patient would need to know.
The subjective standard. The reasonable person standard is widely considered to be an objective standard. By
contrast, the subjective standard judges the adequacy of information by reference to the specific informational
needs of the individual person rather than by the hypothetical reasonable person. Individual needs can differ:
Persons may have unconventional beliefs, unusual health problems, or unique family histories that require a
different informational base than the objective reasonable person needs. For example, a person with a family
history of reproductive problems might desire information that other persons would not need or want before
becoming involved in research on sexual and familial relations. If a physician knows or has reason to believe
that a person wants such information, then withholding it may undermine autonomous choice. The key issue is
whether the standard for the disclosure of information should be tailored to the individual patient and thus made
subjective.62
Of the three standards, the subjective standard is the preferable moral standard of disclosure, because it alone
takes the idea of respect for autonomy seriously and meets persons’ specific informational needs. Nevertheless,
an exclusive reliance on the subjective standard would not suffice for either law or ethics because patients often
do not know what information is relevant for their deliberations, and we cannot reasonably expect a doctor to do
an exhaustive background and character analysis of each patient to determine the relevant information. Hence,
for purposes of ethics, it is best to use the reasonable person standard as the initial standard of disclosure and
then supplement it by investigating the informational needs of particular patients or potential research subjects.
Intentional Nondisclosure
Numerous topics in bioethics involve problems of intentional nondisclosure. They include medical
confidentiality, informed refusal, placebo treatment, randomized clinical trials, genetic counseling, and the duty
to warn third parties. In each area questions have arisen about whether withholding information to patients or
subjects is justified and, if so, under which conditions. For example, in randomized clinical trials, patients
commonly do not know whether they are receiving an investigational drug of interest or rather are receiving no
treatment at all. Some argue that it is ethically acceptable, and highly desirable in some situations, to randomize
patients without their express knowledge and consent in trials comparing widely used, approved interventions
that pose no additional risk.63 However, ethical controversies have erupted over failures to obtain adequately
informed consent for some clinical trials comparing different accepted treatments; a primary example is the
SUPPORT study of oxygen therapy for premature babies.64
In this section we begin with two problems of intentional nondisclosure in clinical ethics and then turn to
problems of withholding information from research subjects. All three subsections ask, “Are these intentional
nondisclosures justifiable?”
Therapeutic privilege. Several controversies in clinical practice involve questions about the conditions under
which a person’s right to autonomous choice demands a disclosure by a physician that would either harm the
patient or harm someone connected to the patient such as a family member or partner. As contexts change—for
example, as a patient becomes increasingly frightened or agitated—the weights of competing moral demands of
respect for autonomy and beneficence vary, and no decision rule is available to determine whether and when one
obligation outweighs the other. No one in bioethics has formulated a hierarchical-ordering rule that requires that
respect for the autonomy of patients and full disclosure of information always overrides the physician’s
obligations to make a good medical judgment about how to protect patients from harm-causing conditions, and
no general theoretical considerations show that physicians must never intentionally withhold information. Much
depends on the weight, in any given circumstance, of a medical benefit and the importance of an item of
information for the patient. (This general problem is explored in the section of Chapter 6 entitled “Paternalism:
Conflicts between Beneficence and Respect for Autonomy” and in the discussion of “Veracity” in Chapter 8.)
Legal exceptions to the rule of informed consent often allow a health professional to proceed without consent in
cases of emergency, incompetence, and waiver. The first two exceptive conditions are generally uncontroversial,
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but some controversy surrounds waivers. A notably controversial exception is the therapeutic privilege, which
states that a physician may legitimately withhold information based on a sound medical judgment that divulging
the information would potentially harm a depressed, emotionally drained, or unstable patient. Possible harmful
outcomes include endangering life, causing irrational decisions, and producing anxiety or stress.65
Despite this exception’s traditionally protected status, United States Supreme Court Justice Byron White once
vigorously attacked the idea that the possibility of increasing a patient’s anxiety about a procedure provides
sufficient justification for an exception to rules of informed consent. White suggested that the legally protected
status of the doctrine of therapeutic privilege lacks the security it once had in medicine.66
Attempts to justify the therapeutic privilege are beneficence- and nonmaleficence-based because nondisclosure
is aimed at the patient’s welfare and at preventing harm from occurring. However, the precise content and
formulation of the therapeutic privilege varies across legal jurisdictions and institutional practices. Some
formulations permit physicians to withhold information if disclosure would cause any deterioration in the
patient’s condition. Other formulations permit the physician to withhold information if and only if the patient’s
knowledge of the information would have serious health-related consequences such as jeopardizing the
treatment’s success or critically impairing the patient’s relevant decision-making faculties.
The narrowest formulation of the therapeutic privilege appeals to circumstances of incompetence: A physician
may invoke the therapeutic privilege only if he or she has sufficient reason to believe that disclosure would
render the patient incompetent to consent to or refuse the treatment. This criterion does not conflict with respect
for autonomy, because the patient would be incapable of an autonomous decision at the point the decision would
occur. However, it is ethically indefensible, even if legally permissible, to invoke the therapeutic privilege
merely on grounds that the disclosure of relevant information might lead a competent patient to refuse a
proposed treatment.67
Therapeutic use of placebos. A related problem in clinical ethics is the therapeutic use of placebos, which
typically, but not always or necessarily, involves limited transparency, incomplete disclosure, or even intentional
deception. A placebo is a substance or intervention that the clinician believes to be pharmacologically or
biomedically inert or inactive for the condition being treated. While “pure” placebos, such as a sugar pill, are
pharmacologically inactive, active medications are sometimes used as “impure” placebos for conditions for
which they are not medically indicated—for example, the prescription of an antibiotic for a common cold.
Systematic evidence is lacking for the clinically significant benefits of most placebos,68 but patient and clinician
reports indicate that placebos relieve some subjective symptoms in as many as one-third of patients who suffer
from conditions such as angina pectoris, cough, anxiety, depression, hypertension, headache, and the common
cold.69 Placebos have also been reported to help some patients with irritable bowel syndrome, pain, and
nausea.70 The primary benefits of placebos occur for more subjective and self-reported symptoms, that is, for the
illness as experienced, rather than for the underlying disease. For instance, a small study of patients with asthma
compared active albuterol, which is a standard treatment, with placebo, sham acupuncture, and no
intervention.71 Only active albuterol improved forced expiratory volume (FEV), an important measure of
pulmonary function. However, according to self-reported outcomes, active albuterol provided no incremental
benefit over placebo and sham acupuncture. While acknowledging such subjective self-reports, critics focus on
placebos’ lack of effect on underlying diseases.
Despite the limited evidence for the clinical benefits of placebos, their provision or prescription is common in
clinical practice. In a national study of US internists and rheumatologists, approximately half of the respondents
reported that over the previous year they had prescribed placebo treatments on a regular basis, most often over-
the-counter analgesics and vitamins. Slightly more than 10% had prescribed antibiotics or sedatives as placebo
treatments; only a few had used saline or sugar pills as placebo treatments. Over 60% of those surveyed
expressed a belief that the practice of prescribing placebos is ethically permissible.72 One survey of patients with
a chronic health problem for which they had seen a primary care provider at least once over the previous six
months found that most were receptive to physicians’ provision or prescription of placebo treatments, depending
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on the circumstances, especially the conditions of transparency and honesty. Only 21.9% opposed placebo
treatments under any circumstances.73
Beyond arguments against deception and failure to respect autonomy, objections to the therapeutic provision or
prescription of placebos include possible negative consequences such as damage to a specific clinical
relationship or to clinical relationships in general because of reduced trust.74 Some defenses of placebos hold
that a patient’s consent to a generic treatment such as “an effective pill” or “a powerful medicine” is sufficient. A
related defense of placebos appeals to the patient’s prior consent to the goals of treatment. Such consent is not
informed consent, but these proposals could be rendered acceptable if the patient were informed in advance that
a placebo would or might be used at some point in the course of treatment and the patient consented to this
arrangement.75
Taking a somewhat similar approach, the American Medical Association (AMA) updated its policy on the
therapeutic use of placebos in 2016. It set three necessary conditions for a physician to meet before using a
placebo for diagnosis or treatment: (1) enlist the cooperation of the patient, (2) obtain the patient’s “general
consent to administer a placebo,” and (3) avoid using a placebo merely to manage a difficult patient. By
obtaining “general consent” (the second condition), the physician “respects the patient’s autonomy and fosters a
trusting relationship while the patient still may benefit from the placebo effect.”76
Evidence indicates that the placebo response or placebo effect can sometimes be produced without nondisclosure
or deception. For example, the placebo response or effect sometimes occurs even if patients have been informed
that a particular substance is pharmacologically inert and consent to its use.77 The mechanisms of placebo
responses are poorly understood, but several hypotheses have been proposed, frequently centering on the healing
context and its symbolic significance and rituals (including the ritual of taking medications) and on the
professional’s care, compassion, and skill in fostering trust and hope.78 However, it is important, when
prescribing placebos, that clinicians not bypass opportunities for effective communication with patients.
Effective communication and enhanced patient understanding can be fostered by admitting uncertainty;
exploring patients’ concerns, outlooks, and values; and inviting patients to be partners in the search for
therapeutic options.79
Withholding information from research subjects. Problems of intentional nondisclosure in clinical practice have
parallels in forms of research in which investigators sometimes withhold information from subjects.
Occasionally, good reasons support nondisclosure. For instance, scientists could not conduct vital research in
fields such as epidemiology if they always had to obtain consent from subjects for access to their medical
records. They justify using such records without consent to establish the prevalence of a particular disease. This
research is often the first phase of an investigation intended to determine whether to trace and contact particular
individuals who are at risk of disease, and the researchers may need to obtain their permission for further
participation in research. Sometimes, however, researchers are not required to contact individuals at all, as, for
example, when hospitals strip personal identifiers from their records so that epidemiologists cannot identify
individual patients. In other circumstances, researchers only need to notify persons in advance about how they
will use data and offer them the opportunity to refuse to participate. In short, some disclosures, warnings, and
opportunities to decline involvement are legitimately substituted for informed consent.
Other forms of intentional nondisclosure in research are difficult to justify. For instance, vigorous debate arose
about a study, designed and conducted by two physicians at the Emory University School of Medicine, to
determine the prevalence of cocaine use and the reliability of self-reports of drug use among male patients in an
Atlanta walk-in, inner-city hospital clinic serving low-income, predominantly black residents. In this study,
approved by the institutional human investigations committee, researchers asked weekday outpatients at Grady
Memorial Hospital to participate in a study about asymptomatic carriage of sexually transmitted diseases
(STDs). The participants provided informed consent for the STD study, but not for an unmentioned piggy-back
study on recent cocaine use and the reliability of self-reports of such use. Researchers informed patients that
their urine would be tested for STDs, but did not disclose that their urine would also be tested for cocaine
metabolites. Of the 415 eligible men who agreed to participate, 39% tested positive for a major cocaine
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metabolite, although 72% of those with positive urinary assays denied any illicit drug use in the three days prior
to sampling. Researchers concluded: “Our findings underscore the magnitude of the cocaine abuse problem for
young men seeking care in inner-city, walk-in clinics. Health care providers need to be aware of the unreliability
of patient self-reports of illicit drug use.”80
This finding was valuable at the time, but these researchers deceived their subjects about some aims and
purposes of the research and did not disclose the means they would use. Investigators thought they faced a
dilemma: On the one hand, they needed accurate information about illicit drug use for health care and public
policy. On the other hand, obtaining adequate informed consent would be difficult, because many potential
subjects would either refuse to participate or would offer false information to researchers. The moral problem is
that rules requiring informed consent have been designed to protect subjects from manipulation and abuse during
the research process. Reports of the strategy used in this cocaine study could increase suspicion of medical
institutions and professionals and could make patients’ self-reports of illegal activities even less reliable.81
Investigators could have resolved their dilemma by developing alternative research designs, including
sophisticated methods of using questions that can either reduce or eliminate response errors without violating
rules of informed consent.
In general, research cannot be justified if significant risk is involved and subjects are not informed that they are
being placed at risk. This conclusion does not imply that researchers can never justifiably undertake studies
involving deception. Relatively risk-free research involving deception or incomplete disclosure has been
common in fields such as behavioral and physiological psychology. However, researchers should use deception
only if it is essential to obtain vital information, it involves no substantial risk to subjects and society, subjects
are informed that deception or incomplete disclosure is part of the study, and subjects consent to participate
under these conditions. (Similar problems of research ethics are discussed in Chapter 8 in the sections on
“Veracity” and “The Dual Roles of Clinician and Investigator.”)
UNDERSTANDING
Understanding is the fifth element of informed consent in our earlier list. Clinical experience and empirical data
indicate that patients and research subjects exhibit wide variation in their understanding of information about
diagnoses, procedures, risks, probable benefits, and prognoses.82 In a study of participants in cancer clinical
trials, 90% indicated they were satisfied with the informed consent process and most thought they were well
informed. However, approximately three-fourths of them did not understand that the trials included nonstandard
and unproven treatment, and approximately one-fourth did not appreciate that the primary purpose of the trials
was to benefit future patients and that the benefits to them personally were uncertain.83
Many factors account for limited understanding in the informed consent process. Some patients and subjects are
calm, attentive, and eager for dialogue, whereas others are nervous or distracted in ways that impair or block
understanding. Illness, irrationality, and immaturity also can limit understanding. Important institutional and
situational factors include pressures of time, limited or no remuneration to professionals for time spent in
communication, and professional conflicts of interest.
The Nature of Understanding
No general consensus exists about the nature and level of understanding needed for an informed consent, but an
analysis sufficient for our purposes is that persons understand if they have acquired pertinent information and
have relevant beliefs about the nature and consequences of their actions. Their understanding need not be
complete, because a grasp of central facts is usually sufficient. Some facts are irrelevant or trivial; others are
vital, perhaps decisive.
In some cases, a person’s lack of awareness of even a single risk or missing fact can deprive him or her of
adequate understanding. Consider, for example, the classic case of Bang v. Miller Hospital (1958), in which
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patient Helmer Bang suffered from urinary problems for which he sought treatment, but he did not intend to
consent to a sterilization entailed in the recommended prostate surgery.84 Bang did, in fact, consent to prostate
surgery, but without being told that sterilization was an inevitable outcome. Although sterilization is not
necessarily an outcome of prostate surgery, it was inevitable in the specific procedure recommended, which
involved cutting Bang’s spermatic cord. Bang’s failure to understand this one surgical consequence
compromised what was otherwise an adequate understanding and invalidated what otherwise would have been a
valid consent.
Patients and subjects usually should understand, at a minimum, what an attentive health care professional or
researcher believes a reasonable patient or subject needs to understand to authorize an intervention. Diagnoses,
prognoses, the nature and purpose of the intervention, alternatives, risks and benefits, and recommendations
typically are essential. Patients or subjects also need to share an understanding with professionals about the
terms of the authorization before proceeding. Unless agreement exists about the essential features of what is
authorized, there is no assurance that a patient or subject has made an autonomous decision and provided a valid
consent. Even if the physician and the patient both use a word such as stroke or hernia, their interpretations may
diverge if standard medical conceptions as used by the physician have meanings the patient does not understand.
Some argue that many patients and subjects cannot comprehend enough information or sufficiently appreciate its
relevance to make autonomous decisions about medical care or participation in research. Such statements
overgeneralize, often because of an improper ideal of full disclosure and full understanding. If we replace this
unrealistic standard with a more defensible account of the understanding of material information, we can avoid
this skepticism. From the fact that actions are never fully informed, voluntary, or autonomous, it does not follow
that they are never adequately informed, voluntary, or autonomous.85
However, some patients have such limited knowledge bases that communication about alien or novel situations
is exceedingly difficult, especially if physicians introduce new concepts and cognitive constructs. Various
studies indicate that these patients likely will have an impoverished and distorted understanding of scientific
goals and procedures.86 However, even in these difficult situations enhanced understanding and adequate
decision making can often be achieved. Professionals may be able to communicate novel or specialized
information to laypersons by drawing analogies between this information and more ordinary events familiar to
the patient or subject. Similarly, professionals can express risks in both numeric and nonnumeric probabilities,
while helping the patient or subject to assign meanings to the probabilities through comparison with more
familiar risks and prior experiences, such as risks involved in driving automobiles or using power tools.87
Even with the assistance of such strategies, enabling a patient to both comprehend and appreciate risks and
probable benefits can be a formidable task. For example, patients confronted with various forms of surgery
understand that they will suffer post-operative pain, but their projected expectations of pain are often inadequate.
Many patients cannot in advance adequately appreciate the nature and severity of the pain, and many ill patients
reach a point when they can no longer balance with clear judgment the threat of pain against the benefits of
surgery. At this point, they may find the benefits of surgery overwhelmingly attractive, while discounting the
risks.
Studies of comprehension. Some studies focus on patients’ and research participants’ failures to comprehend
the risks involved, but problems also arise in the understanding of expected benefits—their nature, probability,
and magnitude. These problems were evident in a study of the understanding of patients with stable coronary
artery disease who chose to undergo percutaneous coronary intervention (PCI). In contrast to the best available
evidence and the views of their cardiologists, the overwhelming majority of these patients thought that PCI
would reduce their risk of a heart attack (88%) and their risk of death from a heart attack (82%), even though
PCI’s major expected benefit for such patients is only symptomatic, namely, relief from chest pain or discomfort.
PCI may be lifesaving for patients who have an acute or unstable angina, and the patients who had only stable
angina may have confused the two conditions because both involve chest pain and discomfort. According to the
investigators and a commentator, direct communication about these and other matters, accompanied by decision
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aids, could have been helpful, especially when accompanied by improvements in the level of reading difficulty
and the information provided in the consent form.88
The therapeutic misconception. The “therapeutic misconception” is an important problem of informed consent
that must be addressed where subjects may fail to distinguish between clinical care and nontherapeutic research
and may fail to understand the purpose and aim of research, thereby misconceiving their participation as
therapeutic in nature.89 The therapeutic misconception presumably invalidates a subject’s consent because he or
she is not specifically consenting to participation in research.90
Sam Horng and Christine Grady appropriately distinguish therapeutic misconception in the strict sense from
therapeutic misestimation and therapeutic optimism.91 The therapeutic misconception, if uncorrected,
invalidates subjects’ consent because they do not have relevant facts sufficiently straight to consent to participate
in research. However, some participants who understand that they are involved in research rather than clinical
care still overestimate the therapeutic possibilities and probabilities—that is, the odds that participants will
benefit. Such a therapeutic misestimation, Horng and Grady argue, should be tolerated if “modest misestimates
do not compromise a reasonable awareness of possible outcomes.” By contrast, in therapeutic optimism
participants accurately understand the odds that participants will benefit but are overly optimistic about their
own chances of beating those odds. This therapeutic optimism usually does not compromise or invalidate the
individual’s informed consent because it more approximates a legitimate hope than an informational bias.
Problems of Information Processing
With the exception of a few studies of comprehension, studies of patients’ decision making pay insufficient
attention to information processing. Yet information overload may prevent adequate understanding, and
physicians exacerbate these problems when they use unfamiliar medical terms.
Some studies have uncovered difficulties in processing information about risks, indicating that risk disclosures
commonly lead subjects to distort information, promote inferential errors, and create disproportionate fears of
some risks. Some ways of framing information are so misleading that both health professionals and patients
regularly misconstrue the content. For example, choices between risky alternatives can be influenced by whether
the same risk information is presented as providing a gain or an opportunity for a patient or as constituting a loss
or a reduction of opportunity.92
One study asked radiologists, outpatients with chronic medical problems, and graduate business students to
make a hypothetical choice between two alternative therapies for lung cancer: surgery and radiation therapy.93
Researchers framed the information about outcomes in terms of (1) survival and (2) death. This difference of
framing affected preferences in all three groups. When faced with outcomes framed in terms of probability of
survival, 25% chose radiation over surgery. However, when the identical outcomes were presented in terms of
probability of death, 42% preferred radiation. The mode of presenting the risk of immediate death from surgical
complications, which has no counterpart in radiation therapy, appears to have made the decisive difference.
These framing effects reduce understanding, with direct implications for autonomous choice. If a misperception
prevents a person from adequately understanding the risk of death and this risk is material to the person’s
decision, then the person’s choice of a procedure does not reflect a substantial understanding and his or her
consent does not qualify as an autonomous authorization. The lesson is that professionals need greater
knowledge of techniques that can enable them to communicate better both the positive and the negative facets of
information—for example, both the survival and the mortality probabilities.
Decision aids are increasingly used to prepare individuals to participate in medical decisions that involve
balancing probable benefits and risks in contexts of scientific uncertainty where decisions about screening or
therapeutic interventions are difficult to evaluate. Studies show that the use of decision aids can provide
important information and enable patients to reflect on their own values and preferences in relation to their
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circumstances and options. The use of these decision aids correlates with patients’ increased knowledge and
more active participation in decision making.94
Problems of Nonacceptance and False Belief
A breakdown in a person’s ability to accept information as true or untainted, even if he or she adequately
comprehends the information, also can compromise decision making. A single false belief can in some
circumstances invalidate a patient’s or subject’s consent, even when there has been a suitable disclosure,
comprehension, and voluntary decision making by the patient. For example, a seriously ill patient who has been
adequately informed about the nature of the illness and has been asked to make a treatment decision might
refuse under the false belief that he or she is not ill. Even if the physician recognizes the patient’s false belief and
adduces conclusive evidence to prove to the patient that the belief is mistaken, and the patient comprehends the
information provided, the patient may go on believing that what has been reported is false.
If ignorance prevents an informed choice, it may be permissible and possibly obligatory to promote autonomy
by attempting to impose unwelcome information. Consider the following case in which a false belief played a
major role in a patient’s refusal of treatment:95
A fifty-seven-year-old woman was admitted to the hospital because of a fractured hip. … During the
course of the hospitalization, a Papanicolaou test and biopsy revealed stage 1A carcinoma of the
cervix. … Surgery was strongly recommended, since the cancer was almost certainly curable by a
hysterectomy. … The patient refused the procedure. The patient’s treating physicians at this point
felt that she was mentally incompetent. Psychiatric and neurological consultations were requested to
determine the possibility of dementia and/or mental incompetency. The psychiatric consultant felt
that the patient was demented and not mentally competent to make decisions regarding her own
care. This determination was based in large measure on the patient’s steadfast “unreasonable”
refusal to undergo surgery. The neurologist disagreed, finding no evidence of dementia. On
questioning, the patient stated that she was refusing the hysterectomy because she did not believe
she had cancer. “Anyone knows,” she said, “that people with cancer are sick, feel bad and lose
weight,” while she felt quite well. The patient continued to hold this view despite the results of the
biopsy and her physicians’ persistent arguments to the contrary.
The physician in this case considered overriding the patient’s refusal, because solid medical evidence indicated
that she was unjustified in believing that she did not have cancer. As long as this patient continues to hold a false
belief that is material to her decision, her refusal is not an adequately informed refusal even if it might turn out to
be a legally valid refusal. The case illustrates some complexities involved in effective communication: The
patient was a poor white woman from Appalachia with a third-grade education. The fact that her treating
physician was black was the major reason for her false belief that she did not have cancer. She would not believe
what a black physician told her. However, intense and sometimes difficult discussions with a white physician
and with her daughter eventually corrected her belief and led her to consent to a successful hysterectomy.
This example illustrates why it is sometimes necessary for clinicians to vigorously challenge patients’ choices
that appear to be legally binding in order to further enhance the quality of their choices rather than merely accept
their choices at face value. The right to refuse unwanted treatment has the appearance of a near absolute right in
biomedical ethics, but the case just considered indicates that health care professionals should carefully consider
when this right needs to be challenged and perhaps even overridden.
Problems of Waivers
Further problems about understanding arise in waivers of informed consent. In the exercise of a waiver, a
competent patient voluntarily relinquishes the right to an informed consent and relieves the physician of the
obligation to obtain informed consent.96 The patient delegates decision-making authority to the physician or to a
third party, or simply asks not to be informed; the patient in effect makes a decision not to make an informed
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decision. However, waivers need not be understood exclusively in this way. Regulations recognize various
waivers of consent requirements as valid when patients or subjects do not autonomously authorize by a waiver in
the normal sense. Examples of such valid waivers occur under conditions of impracticability, emergency
research, and drug and vaccine research with armed forces personnel.97
Some courts have held that physicians need not make disclosures of risk if a patient requests not to be
informed,98 and some writers in biomedical ethics hold that rights are always waivable.99 It is usually
appropriate to recognize waivers of rights because we enjoy discretion over whether to exercise such rights. For
example, if a committed Jehovah’s Witness informed a doctor that he wished to have everything possible done
for him but did not want to know if the hospital utilized transfusions or similar procedures, it is difficult to
imagine a moral argument sufficient to support the conclusion that he must give a specific informed consent to
the transfusions. Nevertheless, a general practice of allowing waivers is dangerous. Many patients have an
inordinate trust in physicians, and a widespread acceptance of waivers of consent in research and therapeutic
settings could make subjects and patients more vulnerable to those who omit consent procedures for
convenience, which is already a serious problem in health care.
No solution to these problems about waivers is likely to emerge that fits all cases. Although each case or
situation of waiver needs to be considered separately, appropriate procedural responses that provide oversight to
protect patients may be needed. For example, institutions can develop rules that disallow waivers except when
they have been approved by deliberative bodies, such as institutional review committees and hospital ethics
committees. If a committee determines that recognizing a waiver would best protect a person’s interest in a
particular case, the waiver could justifiably be sustained.
VOLUNTARINESS
Voluntariness is another element of informed consent and also the third of our three conditions of autonomous
action. Because it was often neglected in the history of research, this element has come to have a prominent role
in biomedical ethics. The Nuremberg Code, for example, insists on voluntariness: A research subject “should be
so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud,
deceit, duress, over-reaching, or other ulterior form of constraint or coercion.”100
We use the term voluntariness more narrowly than some writers do. Some have analyzed voluntariness in terms
of the presence of adequate knowledge, the absence of psychological compulsion, and the absence of external
constraints.101 If we were to adopt such a broad meaning, we would be equating voluntariness with autonomy,
whereas our claim is only that voluntariness—here understood primarily as freedom from controlling conditions
—is a necessary condition of autonomy. A person acts voluntarily if he or she wills the action without being
under the control of another person or the control of a personal psychological condition. We consider here only
the condition of control by other individuals, but we note that conditions such as debilitating disease, psychiatric
disorders, and drug addiction can diminish or destroy voluntariness, thereby precluding autonomous choice and
action.
Forms of Influence
Not being controlled is the key condition of voluntariness, but not all influences exerted on another person are
controlling. If a physician orders a reluctant patient to undergo cardiac catheterization and coerces the patient
into compliance through a threat of abandonment, then the physician’s influence controls the patient. If, by
contrast, a physician rationally persuades the patient to undergo the procedure when the patient is at first
reluctant to do so, then the physician’s actions influence but do not control the patient. Many influences are
resistible, and some are welcomed rather than resisted.
The broad category of influence includes acts of love, threats, education, lies, manipulative suggestions, and
emotional appeals, all of which can vary dramatically in their impact on persons and in their ethical justification.
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Our analysis focuses on three categories of influence: coercion, persuasion, and manipulation. Coercion occurs if
and only if one person intentionally uses a credible and severe threat of harm or force to control another.102 The
threat of force used by some police, courts, and hospitals in acts of involuntary commitment for psychiatric
treatment is coercive. Some threats will coerce virtually all persons (e.g., a credible threat to kill the person),
whereas others will coerce only a few persons (e.g., an employee’s threat to an employer to quit a job unless a
raise is offered). Whether coercion occurs depends in part on the subjective responses of the coercion’s intended
target. However, a subjective response in which persons comply because they feel threatened even though no
threat has actually been issued does not qualify as coercion. Coercion occurs only if an intended and credible
threat displaces a person’s self-directed course of action, thereby rendering even intentional and well-informed
behavior nonautonomous. We reject a common tendency in biomedical ethics to use “coercion” as a broad term
of ethical criticism that obscures relevant and distinctive ethical concerns. For instance, coercion is not identical
to taking advantage of a person in dire circumstances. Both are wrong in most contexts, but perhaps for different
reasons.103
In persuasion a person comes to believe something through the merit of reasons another person advances.
Appeal to reason is distinguishable from influence by appeal to emotion. In health care, the problem is how to
distinguish emotional responses from cognitive responses and to determine which are likely to be evoked.
Disclosures or approaches that might rationally persuade one patient might overwhelm another whose fear or
panic undercuts reason.
Manipulation is a generic term for several forms of influence that are neither persuasive nor coercive.104 The
essence of manipulation is swaying people to do what the manipulator wants by means other than coercion or
persuasion. In health care the most common form of manipulation is informational manipulation, a deliberate act
of managing information that alters a person’s understanding of a situation and motivates him or her to do what
the agent of influence intends. Many forms of informational manipulation are incompatible with autonomous
decision making. For example, lying, withholding information, and exaggeration with the intent to lead persons
to believe what is false all compromise autonomous choice. The manner in which a health care professional
presents information—by tone of voice, by forceful gesture, and by framing information positively (“we succeed
most of the time with this therapy”) rather than negatively (“we fail with this therapy in 35% of the cases”)—can
also manipulate a patient’s perception and response.
Nevertheless, it is easy to inflate control by manipulation beyond its actual significance in health care. We often
make decisions in a context of competing influences, such as personal desires, familial constraints, legal
obligations, and institutional pressures, but these influences usually do not control decisions to a morally
worrisome degree.
The Obligation to Abstain from Controlling Influence
Coercion and controlling manipulation are occasionally justified—infrequently in medicine, more often in public
health, and even more often in law enforcement. If a physician taking care of a disruptive and noncompliant
patient threatens to discontinue treatment unless the patient alters certain behaviors, the physician’s mandate
may be both coercive and justified. The most difficult problems about manipulation do not involve threat and
punishment, which are almost always unjustified in health care and research. They involve the effect of rewards,
offers, encouragement, and other nudges.
A classic example of an unjustified offer occurred during the Tuskegee syphilis study, which left close to four
hundred African American males who had been diagnosed with syphilis untreated for decades in order to study
the natural history of untreated syphilis, even though penicillin, an effective treatment for syphilis, became
available during those years. Researchers used various offers to stimulate and sustain the subjects’ interest in
continued participation; these offers included free burial assistance and insurance, free transportation to and
from the examinations, and a free stop in town on the return trip. Subjects also received free medicines and free
hot meals on the days of their examination. The subjects’ socioeconomic deprivation made them vulnerable to
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these overt and unjustified forms of manipulation.105 These manipulative endeavors were coupled with
deception that hid the nature and nontherapeutic intent of the study.
The conditions under which an influence both controls persons and lacks moral justification are reasonably clear
in theory but often unclear in concrete situations. For example, patients have reported feeling severe pressure to
enroll in clinical trials, even though their enrollment is voluntary.106 Some difficult cases in health care involve
manipulation-like situations in which patients or subjects desperately need a given medication or a source of
income. Attractive offers such as free medication or extra money can leave a person without a meaningful
choice. A threatening situation can constrain a person even in the absence of another’s intentional manipulation.
Influences that persons ordinarily find resistible can control abnormally weak, dependent, and surrender-prone
patients.107 People’s vulnerabilities differ, producing variations in what constitutes an “undue” influence.108
The threat of exploitation for research and other purposes is substantial in institutions in which populations are
confined involuntarily. Rules, policies, and practices can work to compromise autonomous choice even if
persons voluntarily admit themselves to institutions. Consider long-term care, where the elderly in nursing
homes can experience constricted choices in everyday matters. Many suffer a decline in the ability to carry out
personal choices because of physical impairments, but this decline in executional autonomy need not be
accompanied by a decline in decisional autonomy.109 On the one hand, the problem is that caregivers in nursing
homes may neglect, misunderstand, or override residents’ autonomous decisions in everyday decisions about
food, roommates, possessions, exercise, sleep, and clothes, along with baths, medications, and restraints. On the
other hand, institutional needs for structure, order, safety, and efficiency are sometimes legitimately invoked to
override residents’ apparent autonomous choices.
SURROGATE DECISION MAKING FOR ECISION NONAUTONOMOUS
PATIENTS
We turn now from conditions of consent by autonomous decision makers—and limitations on autonomy in some
situations—to standards of surrogate decision making when patients are not autonomous or are doubtfully
autonomous. Surrogates daily make decisions to terminate or continue treatment for incompetent patients, for
example, those suffering from stroke, Alzheimer’s disease, Parkinson’s disease, chronic depression affecting
cognitive function, senility, and psychosis. If a patient is not competent to accept or refuse treatment, a hospital,
physician, or family member may justifiably exercise a decision-making role, depending on legal and
institutional rules, or go before a court or other authority to resolve uncertainties about decision-making
authority.
Three general standards have been proposed for use by surrogate decision makers: substituted judgment, which
is sometimes presented as an autonomy-based standard; pure autonomy; and the patient’s best interests. Our
objective in this section is to restructure and integrate this set of standards for surrogate decision, creating a
coherent framework. We evaluate these standards for purposes of law and policy, but our underlying moral
argument concerns how to protect both patients’ former autonomous preferences and their current best interests.
(In Chapter 5 we examine who should be the surrogate decision maker.)
The Substituted Judgment Standard
The standard of substituted judgment holds that decisions about treatment properly belong to the incompetent or
nonautonomous patient because of his or her rights of autonomy and privacy. Patients have the right to decide
and to have their values and preferences taken seriously even when they lack the capacity to exercise those
rights. It would be unfair to deprive an incompetent patient of decision-making rights merely because he or she
is no longer, or has never been, autonomous.
This is a weak standard of autonomy. It requires the surrogate decision maker to “don the mental mantle of the
incompetent,” as a judge in a classic court case put it; the surrogate is to make the decision the incompetent
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person would have made if competent. In this case, the court invoked the standard of substituted judgment to
decide that Joseph Saikewicz, an adult who had never been competent, would have refused treatment had he
been competent. Acknowledging that what the majority of reasonable people would choose might differ from the
choice of a particular incompetent person, the court judiciously affirms, “The decision in many cases such as this
should be that which would be made by the incompetent person, if that person were competent, but taking into
account the present and future incompetency of the individual as one of the factors which would necessarily
enter into the decision-making process of the competent person.”110
This standard of substituted judgment could and should be used for once-competent patients, but only if reason
exists to believe that the surrogate decision maker can make a judgment that the patient would have made.111 In
such cases, the surrogate should have a sufficiently deep familiarity with the patient that the particular judgment
made reflects the patient’s views and values. Merely knowing something in general about the patient’s personal
values is not sufficient. Accordingly, if the surrogate can reliably answer the question, “What would the patient
want in this circumstance?” substituted judgment is an appropriate standard that approximates first-person
consent. However, if the surrogate can only answer the question, “What do you want for the patient?” then a
choice should be made on the basis of the patient’s best interests rather than an autonomy standard. We cannot
follow a substituted judgment standard for never-competent patients, because no basis exists for a judgment of
their autonomous choice.
The Pure Autonomy Standard
A second standard eliminates the questionable idea of autonomy in the substituted judgment standard and
replaces it with real autonomy. The pure autonomy standard applies exclusively to formerly autonomous, now-
incompetent patients who, when autonomous, expressed a relevant treatment preference. The principle of respect
for autonomy morally compels us to respect such clear preferences, even if the person can no longer express the
preference for himself or herself. Whether or not a formal advance directive exists, this standard holds that
caretakers should act on the patient’s prior autonomous judgments, sometimes called “precedent autonomy.”
Disputes arise, however, about the criteria of satisfactory evidence to support taking action under this standard.
In the absence of explicit instructions, a surrogate decision maker might select from the patient’s life history
values that accord with the surrogate’s own values, and then use only those values in reaching decisions. The
surrogate might also base his or her findings on the patient’s values that are only distantly relevant to the
immediate decision (e.g., the patient’s expressed dislike of hospitals). It is reasonable to ask what a surrogate
decision maker can legitimately infer from a patient’s prior conduct, especially from conditions such as fear and
avoidance of doctors and earlier refusals to consent to physician recommendations.
Some evidence has been collected that surrogate decision makers for hospitalized older adults focus more on the
patients’ best interests than on the patients’ prior preferences unless those preferences were explicitly formulated
in advance directives.112 Of course, even when the patient has provided an oral or written advance directive,
surrogates need to determine whether it displays an autonomous preference that is directly pertinent to the
decision at hand.113
The Best Interests Standard
Often a patient’s relevant autonomous preferences cannot be determined. Under the best interests standard, a
surrogate decision maker must then determine the highest probable net benefit among the available options,
assigning different weights to interests the patient has in each option balanced against their inherent risks,
burdens, or costs. The term best applies because of the surrogate’s obligation to act beneficently by maximizing
benefit through a comparative assessment that locates the highest probable net benefit. The best interests
standard protects an incompetent person’s welfare interests by requiring surrogates to assess the risks and
probable benefits of various treatments and alternatives to treatment. It is therefore inescapably a quality-of-life
criterion.
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The best interests standard can justifiably override consents or refusals by minors or other incompetent patients,
but, less obviously, it can also, in some circumstances, justifiably override advance directives appropriately
prepared by formerly autonomous patients. This overriding can occur, for example, in a case in which a person
by durable power of attorney has designated a surrogate to make medical decisions on his or her behalf. If the
designated surrogate makes a decision that threatens the patient’s best interests, the decision morally can and
should be overridden by the medical team unless the patient while competent executed a clearly worded
document that specifically supports the surrogate’s decision.
Challenges to reliance on advance directives often stress the formerly autonomous person’s failure to anticipate
the circumstances that emerged. Examples are cases of apparently contented, nonsuffering, incompetent patients
who can be expected to survive if treated against their advance directive but who otherwise would die.
Discussions in the relevant literature at one time focused on the case of “Margo,” a patient with Alzheimer’s
who, according to a medical student who visited her regularly, is “one of the happiest people I have ever
known.”114 Some discussants ask us to imagine what should be done if Margo had a living will, executed just at
the onset of her Alzheimer’s, stating that she did not want life-sustaining treatment if she developed another life-
threatening illness. In that circumstance caregivers would have to determine whether to honor her advance
directive, and thereby to respect her precedent autonomy, by not using antibiotics to treat her pneumonia, or to
act in accord with what may appear to be her current best interests in light of her overall happiness.
As persons slip into incompetence, their condition can be very different from, and sometimes better than, they
had anticipated. If so, it seems unfair to the now happily situated incompetent person to be bound by a prior
decision that may have been underinformed and shortsighted. In Margo’s case, not using antibiotics would
arguably harm what Ronald Dworkin calls, in discussing her case, her “experiential interests”—that is, her
contentment with her current life. However, providing antibiotics would violate her living will, which expresses
her considered values, her life story and commitments, and the like. Dworkin argues that Margo therefore should
not be treated in these circumstances.115 By contrast, the President’s Council on Bioethics concluded that
“Margo’s apparent happiness would seem to make the argument for overriding the living will morally
compelling in this particular case.”116
Except in unusual cases, such as Margo’s, we are obligated to respect the previously expressed autonomous
wishes of the now-nonautonomous person because of the continuing force of the principle of respect for the
autonomy of the person who made the decision. However, as we have seen, advance directives raise complex
issues and occasionally can be justifiably overridden.
In this section we have argued that previously competent patients who autonomously expressed clear preferences
in an oral or written advance directive should be treated under the pure autonomy standard, and we have
suggested an economy of standards by viewing the first standard (substituted judgment) and the second standard
(pure autonomy) as essentially identical. However, if the previously competent person left no reliable trace of his
or her preferences—or if the individual was never competent—surrogate decision makers should adhere to the
best interests standard.
CONCLUSION
The intimate connection between autonomy and decision making in health care and research, notably in
circumstances of consent and refusal, unifies this chapter’s several sections. We have justified the obligation to
solicit decisions from patients and potential research subjects by appeal to the principle of respect for autonomy,
but we have also acknowledged that the principle’s precise demands can require thoughtful, and sometimes
meticulous, interpretation and specification.
We have criticized various approaches to obtaining consents, but we are mindful that the history of informed
consent and the place of autonomy in biomedical ethics are still under development. Current deficiencies in our
systems and practices may become apparent in the near future just as we now recognize the past moral failures
noted in this chapter. In examining standards for surrogate decision makers to use in regard to nonautonomous
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patients, we have proposed an integrated set of standards of (1) respect for the patient’s prior autonomous
choices where reliably known and (2) the patient’s best interests in the absence of reliable knowledge of the
patient’s prior autonomous choices. We have argued that (2) occasionally justifiably overrides (1) in
circumstances of a conflict between the two.
We again stress in this conclusion that it is indefensible to construe respect for autonomy as a principle with
priority over all other moral principles; it is one principle in our framework of prima facie principles suitable for
biomedical ethics. The human moral community—indeed, morality itself—is rooted no less deeply in the three
clusters of principles to be discussed in the next three chapters.
NOTES
1. 1. Those who enroll in research are generally referred to as subjects, but occasionally as participants. The
choice of words can be morally significant. See the discussion of this distinction in National Bioethics
Advisory Commission (NBAC), Ethical and Policy Issues in Research Involving Human Participants,
vol. I, Report and Recommendations (Bethesda, MD: NBAC, August 2001), pp. 32–33. See also our
Chapter 6, endnote 1.
2. 2. The core idea of autonomy is treated by Joel Feinberg, Harm to Self, vol. 3 in The Moral Limits of
Criminal Law (New York: Oxford University Press, 1986), chaps. 18–19; various essays in Franklin G.
Miller and Alan Wertheimer, eds., The Ethics of Consent: Theory and Practice (New York: Oxford
University Press, 2010); and several essays in James Stacey Taylor, ed., Personal Autonomy: New Essays
on Personal Autonomy and Its Role in Contemporary Moral Philosophy (Cambridge: Cambridge
University Press, 2005).
3. 3. For an argument that points to the importance of developing a broader theory of the nature of autonomy
than we provide, see Rebecca Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,”
Hastings Center Report 35 (March–April 2005): 34–44; and Kukla, “Living with Pirates: Common
Morality and Embodied Practice,” Cambridge Quarterly of Healthcare Ethics 23 (2014): 75–85.
4. 4. Gerald Dworkin, The Theory and Practice of Autonomy (New York: Cambridge University Press,
1988), chaps. 1–4; Harry G. Frankfurt, “Freedom of the Will and the Concept of a Person,” Journal of
Philosophy 68 (1971): 5–20, as reprinted in The Importance of What We Care About (Cambridge:
Cambridge University Press, 1988), pp. 11–25. Frankfurt may be primarily focused on a theory of
freedom rather than a theory of autonomy; but see his uses of the language of “autonomy” in his Necessity,
Volition, and Love (Cambridge: Cambridge University Press, 1999), chaps. 9, 11, especially pp. 95–110,
137.
5. 5. Dworkin, The Theory and Practice of Autonomy, p. 20.
6. 6. Agnieszka Jaworska, “Caring, Minimal Autonomy, and the Limits of Liberalism,” in Naturalized
Bioethics: Toward Responsible Knowing and Practice, ed. Hilde Lindemann, Marian Verkerk, and
Margaret Urban Walker (New York: Cambridge University Press, 2009), pp. 80–105, esp. 82.
7. 7. For a “planning theory” and its relation to theories of autonomy, see Michael Bratman, “Planning
Agency, Autonomous Agency,” in Personal Autonomy, ed. Taylor, pp. 33–57.
8. 8. See the issues identified in Arthur Kuflik, “The Inalienability of Autonomy,” Philosophy & Public
Affairs 13 (1984): 271–98; Joseph Raz, “Authority and Justification,” Philosophy & Public Affairs 14
(1985): 3–29; and Christopher McMahon, “Autonomy and Authority,” Philosophy & Public Affairs 16
(1987): 303–28.
9. 9. See several essays in Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social
Self, ed. Catriona Mackenzie and Natalie Stoljar (New York: Oxford University Press, 2000); Natalie
Stoljar, “Feminist Perspectives on Autonomy,” Stanford Encyclopedia of Philosophy (Fall 2015 Edition),
ed. Edward N. Zalta, available at https://plato.stanford.edu/archives/fall2015/entries/feminism-autonomy/
(retrieved May 2, 2018); Marilyn Friedman, Autonomy, Gender, and Politics (New York: Oxford
University Press, 2003); Friedman, “Autonomy and Social Relationships: Rethinking the Feminist
Critique,” in Diana T. Meyers, ed., Feminists Rethink the Self (Boulder, CO: Westview Press, 1997), pp.
40–61; Jennifer K. Walter and Lainie Friedman Ross, “Relational Autonomy: Moving beyond the Limits
of Isolated Individualism,” Pediatrics 133, Supplement 1 (2014): S16–S23; and Alasdair Maclean on
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“relational consent” in his Autonomy, Informed Consent and Medical Law: A Relational Challenge
(Cambridge: Cambridge University Press, 2009). See also the analysis of relational autonomy in James F.
Childress, “Autonomy” [Addendum], Bioethics (formerly Encyclopedia of Bioethics), 4th ed., editor in
chief, Bruce Jennings (Farmington Hills, MI: Gale, Cengage Learning—Macmillan Reference USA,
2014), vol. 1, pp. 307–9.
10. 10. See, further, Natalie Stoljar, “Informed Consent and Relational Conceptions of Autonomy,” Journal of
Medicine and Philosophy 36 (2011): 375–84; Carolyn Ells, “Shifting the Autonomy Debate to Theory as
Ideology,” Journal of Medicine and Philosophy 26 (2001): 417–30; Susan Sherwin, “A Relational
Approach to Autonomy in Health-Care,” in The Politics of Women’s Health: Exploring Agency and
Autonomy, The Feminist Health Care Ethics Research Network (Philadelphia: Temple University Press,
1998); and Anne Donchin, “Understanding Autonomy Relationally,” Journal of Medicine and Philosophy
23, no. 4 (1998).
11. 11. See Barbara Herman, “Mutual Aid and Respect for Persons,” Ethics 94 (July 1984): 577–602, esp.
600–602; and Onora O’Neill, “Universal Laws and Ends-in-Themselves,” Monist 72 (1989): 341–61.
12. 12. This misunderstanding of our views is found in M. Therese Lysaught, “Respect: or, How Respect for
Persons Became Respect for Autonomy,” Journal of Medicine and Philosophy 29 (2004): 665–80, esp.
676.
13. 13. Carl E. Schneider, The Practice of Autonomy: Patients, Doctors, and Medical Decisions (New York:
Oxford University Press, 1998), esp. p. xi. For various views supportive of a limited role for the principle
of respect for autonomy, see Paul Root Wolpe, “The Triumph of Autonomy in American Bioethics: A
Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, ed. Raymond DeVries
and Janardan Subedi (Upper Saddle River, NJ: Prentice Hall, 1998), pp. 38–59; Sarah Conly, Against
Autonomy: Justifying Coercive Paternalism (Cambridge: Cambridge University Press, 2013); Jukka
Varelius, “The Value of Autonomy in Medical Ethics,” Medicine, Health Care, and Philosophy 9 (2006):
377–88; Daniel Callahan, “Autonomy: A Moral Good, Not a Moral Obsession,” Hastings Center Report
14 (October 1984): 40–42. Contrast James F. Childress, “The Place of Autonomy in Bioethics,” Hastings
Center Report 20 (January–February 1990): 12–16; and Thomas May, “The Concept of Autonomy in
Bioethics: An Unwarranted Fall from Grace,” in Personal Autonomy, ed. Taylor, pp. 299–309.
14. 14. Leslie J. Blackhall, Sheila T. Murphy, Gelya Frank, et al., “Ethnicity and Attitudes toward Patient
Autonomy,” JAMA: Journal of the American Medical Association 274 (September 13, 1995): 820–25.
15. 15. Joseph A. Carrese and Lorna A. Rhodes, “Western Bioethics on the Navajo Reservation: Benefit or
Harm?” JAMA: Journal of the American Medical Association 274 (September 13, 1995): 826–29.
16. 16. We make these points to forestall misunderstanding. Some critics of theories that connect respect for
autonomy to informed consent mistakenly presume that defenders of these views, including us, view
consent as necessary and sufficient. See, for example, Neil C. Manson and Onora O’Neill, Rethinking
Informed Consent in Bioethics (Cambridge: Cambridge University Press, 2007), pp. 19, 185ff.
17. 17. For further discussion of the relation between autonomy and consent, see Tom L. Beauchamp,
“Autonomy and Consent,” in The Ethics of Consent, ed. Miller and Wertheimer, chap. 3.
18. 18. See Avram Goldstein, “Practice vs. Privacy on Pelvic Exams,” Washington Post, May 10, 2003, p. A1,
available at https://www.washingtonpost.com/archive/politics/2003/05/10/practice-vs-privacy-on-pelvic-
exams/4e9185c4-4b4c-4d6a-a132-b21b8471da58/?utm_term=.ee1d008b73ce (accessed May 8, 2018).
19. 19. For studies of views of women in Canada and Ireland, see S. Wainberg, H. Wrigley, J. Fair, and S.
Ross, “Teaching Pelvic Examinations under Anaesthesia: What Do Women Think?” Journal of Obstetrics
and Gynaecology Canada, Journal d’Obstétrique et Gynécologie du Canada 32, no. 1 (2010): 49–53; and
F. Martyn and R. O’Connor, “Written Consent for Intimate Examinations Undertaken by Medical Students
in the Operating Theatre—Time for National Guidelines?” Irish Medical Journal 102, no. 10 (2009): 336–
37. See also the discussion of the evidence about women’s views in Phoebe Friesen, “Educational Pelvic
Exams on Anesthetized Women: Why Consent Matters,” Bioethics 32 (2018): 298–307.
20. 20. Britt-Ingjerd Nesheim, “Commentary: Respecting the Patient’s Integrity Is the Key,” BMJ: British
Medical Journal 326 (January 11, 2003): 100. For a thorough examination of the ethical issues and an
argument that the practice of unconsented pelvic examinations in medical education is “immoral and
indefensible,” see Friesen, “Educational Pelvic Exams on Anesthetized Women: Why Consent Matters.”
21. 21. See Shawn S. Barnes, “Practicing Pelvic Examinations by Medical Students on Women under
Anesthesia: Why Not Ask First?” Obstetrics and Gynecology 120, no. 4 (2012): 941–43; and Arthur L.
https://www.washingtonpost.com/archive/politics/2003/05/10/practice-vs-privacy-on-pelvic-exams/4e9185c4-4b4c-4d6a-a132-b21b8471da58/?utm_term=.ee1d008b73ce
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Caplan, “Pelvic Exams Done on Anesthetized Women without Consent: Still Happening,” Medscape, May
2, 2018, available at https://www.medscape.com/viewarticle/894693 (accessed October 7, 2018).
22. 22. Peter A. Ubel, Christopher Jepson, and Ari Silver-Isenstadt, “Don’t Ask, Don’t Tell: A Change in
Medical Student Attitudes after Obstetrics/Gynecology Clerkships toward Seeking Consent for Pelvic
Examinations on an Anesthetized Patient,” American Journal of Obstetrics and Gynecology 188 (February
2003): 575–79.
23. 23. Bernard M. Branson, H. Hunter Handsfield, Margaret A. Lampe, et al., “Revised Recommendations
for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings,” Morbidity and
Mortality Weekly Report, Recommendations and Report 55 (RR-14) (September 22, 2006): 1–17. These
recommendations expect specific, explicit informed consent in nonclinical settings.
24. 24. See Ronald Bayer and Amy L. Fairchild, “Changing the Paradigm for HIV Testing—The End of
Exceptionalism,” New England Journal of Medicine 355 (August 17, 2006): 647–49; Lawrence O. Gostin,
“HIV Screening in Health Care Settings: Public Health and Civil Liberties in Conflict?” JAMA: Journal of
the American Medical Association 296 (October 25, 2006): 2023–25; and Thomas R. Frieden et al.,
“Applying Public Health Principles to the HIV Epidemic,” New England Journal of Medicine 353
(December 1, 2005): 2397–402. For a cost-effectiveness analysis, see Gillian D. Sanders et al., “Cost-
Effectiveness of Screening for HIV in the Era of Highly Active Antiretroviral Therapy,” New England
Journal of Medicine 352 (February 10, 2005): 570–85.
25. 25. See HIVgov, U.S. Statistics, available at https://www.hiv.gov/hiv-basics/overview/data-and-
trends/statistics (accessed October 12, 2018).
26. 26. See Centers for Disease Control and Prevention, HIV/AIDS, HIV Treatment as Prevention, available at
https://www.cdc.gov/hiv/risk/art/index.html (accessed October 11, 2018); and Myron S. Cohen and
Cynthia L. Gay, “Treatment to Prevent Transmission of HIV-1,” Clinical Infectious Diseases 50 (2010):
S85–S95. See also Carl W. Dieffenbach and Anthony S. Fauci, “Thirty Years of HIV and AIDS: Future
Challenges and Opportunities,” Annals of Internal Medicine 154, no. 11 (June 2011): 766–72.
27. 27. Centers for Disease Control and Prevention, HIV/AIDS, HIV Treatment as Prevention.
28. 28. Quoted in Bayer and Fairchild, “Changing the Paradigm for HIV Testing,” p. 649.
29. 29. For the evolution of informed consent in HIV testing in the United States, with attention to several
factors that led to the end of written informed consent, see Ronald Bayer, Morgan Philbin, and Robert H.
Remien, “The End of Written Informed Consent for HIV Testing: Not with a Bang but a Whimper,”
American Journal of Public Health 107, no. 8 (August 2017): 1259–65. Nebraska, the last state to change
its law, did so in 2018 after this article appeared. See Nebraska Legislature, Legislative Bill 285
(Approved by the governor February 28, 2018), available at
https://nebraskalegislature.gov/FloorDocs/105/PDF/Slip/LB285 (accessed October 7, 2018).
30. 30. For a comprehensive discussion of the issues raised by “opt-out” policies to increase the supply of
transplantable organs, see J. Bradley Segal and Robert D. Truog, “Options for Increasing the Supply of
Transplantable Organs,” Harvard Health Policy Review, December 2, 2017, available at
http://www.hhpronline.org/articles/2017/12/2/options-for-increasing-the-supply-of-transplantable-organs-
2 (accessed May 2, 2018); and Institute of Medicine (now Academy of Medicine), Committee on
Increasing Rates of Organ Donation, Organ Donation: Opportunities for Action, ed. James F. Childress
and Catharyn Liverman (Washington, DC: National Academies Press, 2006), chap. 7. See also Richard H.
Thaler and Cass R. Sunstein, Nudge: Improving Decisions about Health, Wealth, and Happiness (New
Haven, CT: Yale University Press, 2008), chap. 11, “How to Increase Organ Donations.”
31. 31. This case was developed by Dr. Gail Povar.
32. 32. See Thomas Grisso and Paul S. Appelbaum, Assessing Competence to Consent to Treatment: A Guide
for Physicians and Other Health Professionals (New York: Oxford University Press, 1998), p. 11.
33. 33. The analysis in this section has profited from discussions with Ruth R. Faden, Nancy M. P. King, and
Dan Brock.
34. 34. See the examination of the core meaning in Charles M. Culver and Bernard Gert, Philosophy in
Medicine (New York: Oxford University Press, 1982), pp. 123–26.
35. 35. Pratt v. Davis, 118 Ill. App. 161 (1905), aff’d, 224 Ill. 300, 79 N.E. 562 (1906).
36. 36. See Daniel Wikler, “Paternalism and the Mildly Retarded,” Philosophy & Public Affairs 8 (1979):
377–92; and Kenneth F. Schaffner, “Competency: A Triaxial Concept,” in Competency, ed. M. A. G.
Cutter and E. E. Shelp (Dordrecht, Netherlands: Kluwer Academic, 1991), pp. 253–81.
https://www.medscape.com/viewarticle/894693
https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
https://www.cdc.gov/hiv/risk/art/index.html
https://nebraskalegislature.gov/FloorDocs/105/PDF/Slip/LB285
http://www.hhpronline.org/articles/2017/12/2/options-for-increasing-the-supply-of-transplantable-organs-2
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37. 37. This case was prepared by Dr. P. Browning Hoffman for presentation in the series of “Medicine and
Society” conferences at the University of Virginia.
38. 38. Laura L. Sessums, Hanna Zembrzuska, and Jeffrey L. Jackson, “Does This Patient Have Medical
Decision-Making Capacity?” JAMA: Journal of the American Medical Association 306 (July 27, 2011):
420–27. See also J. B. Jourdan and L. Glickman, “Reasons for Requests for Evaluation of Competency in
a Municipal General Hospital,” Psychomatics 32 (1991): 413–16.
39. 39. This schema is indebted to Paul S. Appelbaum and Thomas Grisso, “Assessing Patients’ Capacities to
Consent to Treatment,” New England Journal of Medicine 319 (December 22, 1988): 1635–38;
Appelbaum and Grisso, “The MacArthur Treatment Competence Study I. Mental Illness and Competence
to Consent to Treatment,” Law and Human Behavior 19 (1995): 105–26; and Jessica W. Berg, Paul S.
Appelbaum, Charles W. Lidz, and Lisa S. Parker, Informed Consent: Legal Theory and Clinical Practice,
2nd ed. (New York: Oxford University Press, 2001).
40. 40. For a comprehensive treatment, see Ian McDowell, Measuring Health: A Guide to Rating Scales and
Questionnaires, 3rd ed. (Oxford: Oxford University Press, 2006).
41. 41. For additional ways in which values are incorporated, see Loretta M. Kopelman, “On the Evaluative
Nature of Competency and Capacity Judgments,” International Journal of Law and Psychiatry 13 (1990):
309–29. For conceptual and epistemic problems in available tests, see E. Haavi Morreim, “Competence:
At the Intersection of Law, Medicine, and Philosophy,” in Competency, ed. Cutter and Shelp, pp. 93–125,
esp. pp. 105–8.
42. 42. It is beyond the scope of our discussion to analyze and evaluate the numerous tests and instruments
that have been developed to assess decisional capacity for clinical treatment and research. The following
three books offer guidance to “best practices” of assessing competence: Grisso and Appelbaum, Assessing
Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals; Scott Y. H.
Kim, Evaluation of Capacity to Consent to Treatment and Research, Best Practices in Forensic Mental
Health Assessment (New York: Oxford University Press, 2010); and Deborah Bowman, John Spicer, and
Rehana Iqbal, Informed Consent: A Primer for Clinical Practice (Cambridge: Cambridge University
Press, 2012), chapter 2, “On Capacity: Can the Patient Decide?”
43. 43. Grisso and Appelbaum, Assessing Competence to Consent to Treatment, p. 139.
44. 44. Allen Buchanan and Dan Brock, Deciding for Others (Cambridge: Cambridge University Press, 1989),
pp. 51–70; Willard Gaylin, “The Competence of Children: No Longer All or None,” Hastings Center
Report 12 (1982): 33–38, esp. 35; and Eric Kodish, “Children’s Competence for Assent and Consent: A
Review of Empirical Findings,” Ethics & Behavior 14 (2004): 255–95.
45. 45. Buchanan and Brock, Deciding for Others, pp. 52–55. For elaboration and defense, see Brock,
“Decisionmaking Competence and Risk,” Bioethics 5 (1991): 105–12.
46. 46. NBAC, Report and Recommendations of the National Bioethics Advisory Commission, Research
Involving Persons with Mental Disorders That May Affect Decision Making Capacity, vol. 1 (Rockville,
MD: National Bioethics Advisory Commission, December 1998), p. 58.
47. 47. For concise accounts of how informed consent grew and developed in law, regulation, and policy,
principally in the United States, see Alexander M. Capron, “Legal and Regulatory Standards of Informed
Consent in Research,” in The Oxford Textbook of Clinical Research Ethics, ed. Ezekiel Emanuel, Christine
Grady, Robert Crouch, et al. (New York: Oxford University Press, 2008), pp. 613–32; Presidential
Commission for the Study of Bioethical Issues, “Informed Consent Background” (as updated September
30, 2016), available at
https://bioethicsarchive.georgetown.edu/pcsbi/sites/default/files/1%20Informed%20Consent%20Backgrou
nd%209.30.16 (accessed May 6, 2018); and Faden and Beauchamp, A History and Theory of Informed
Consent, chaps. 2 and 4.
48. 48. See Neal W. Dickert, Nir Eyal, Sara F. Goldkind, et al., “Reframing Consent for Clinical Research: A
Function-Based Approach,” American Journal of Bioethics 17 (2017): 3–11. See the reply to these authors
by Tom L. Beauchamp, “The Idea of a ‘Standard View’ of Informed Consent,” American Journal of
Bioethics 17 (2017): 1–2 (editorial). For analysis of the justification of informed consent in research, see
Dan W. Brock, “Philosophical Justifications of Informed Consent in Research,” in The Oxford Textbook of
Clinical Research Ethics, ed. Emanuel, Grady, Crouch, et al., pp. 606–12. Brock is a coauthor of
“Reframing Consent for Clinical Research: A Function-Based Approach,” and his work implicitly shows
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the compatibility of a function-based approach with one grounded in normative philosophical
justifications.
49. 49. Onora O’Neill, Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002);
O’Neill, “Autonomy: The Emperor’s New Clothes,” Proceedings of the Aristotelian Society, supp. vol. 77
(2003): 1–21; O’Neill, “Some Limits of Informed Consent,” Journal of Medical Ethics 29 (2003): 4–7;
and Manson and O’Neill, Rethinking Informed Consent in Bioethics.
50. 50. O’Neill, “Some Limits of Informed Consent,” p. 5.
51. 51. See Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984), pp. 86–87
(Reprint ed. Baltimore, MD: Johns Hopkins University Press, 2002); and President’s Commission for the
Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care
Decisions, vol. 1 (Washington, DC: US Government Printing Office, 1982), p. 15.
52. 52. See James F. Childress, “Needed: A More Rigorous Analysis of Models of Decision Making and a
Richer Account of Respect for Autonomy,” American Journal of Bioethics 17, no. 11 (2017): 52–54, in
response to Peter A. Ubel, Karen A. Scherr, and Angela Fagerlin, “Empowerment Failure: How
Shortcomings in Physician Communication Unwittingly Undermine Patient Autonomy,” American
Journal of Bioethics 17, no. 11 (2017): 31–39, which seeks to combine a model of shared decision making
with patient empowerment. See, in turn, Ubel, Scherr, and Fagerlin, “Autonomy: What’s Shared Decision
Making Have to Do with It?” American Journal of Bioethics 18, no. 2 (February 2018): W11–W12, which
concedes the problems with the term “shared decision making,” but stresses that it refers to the “process”
of decision making and could be called “assisted decision making” and argues, less convincingly, that
challenging the legitimacy of the increasingly accepted term at this point could actually damage patient
autonomy.
53. 53. For extensions of this thesis, see Simon Whitney, Amy McGuire, and Laurence McCullough, “A
Typology of Shared Decision Making, Informed Consent, and Simple Consent,” Annals of Internal
Medicine 140 (2004): 54–59.
54. 54. The analysis in this subsection is based in part, but substantially, on Faden and Beauchamp, A History
and Theory of Informed Consent, chap. 8.
55. 55. Mohr v. Williams, 95 Minn. 261, 265; 104 N.W. 12, at 15 (1905).
56. 56. Franklin G. Miller and Alan Wertheimer, “The Fair Transaction Model of Informed Consent: An
Alternative to Autonomous Authorization,” Kennedy Institute of Ethics Journal 21 (2011): 201–18. On pp.
210–12 these authors recognize the importance of our second sense of “informed consent” and the
qualifications it allows, but they do not confront our views about the critical importance of maintaining the
first sense as the primary model of an informed consent. See further their “Preface to a Theory of Consent
Transactions: Beyond Valid Consent,” in The Ethics of Consent, ed. Miller and Wertheimer, pp. 79–105.
For an expanded and revised version of the last essay, see Alan Wertheimer, Rethinking the Ethics of
Clinical Research: Widening the Lens (New York: Oxford University Press, 2011), chap. 3.
57. 57. See, for example, National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, The Belmont Report (Washington, DC: DHEW Publication OS 78–0012, 1978), p.
10; Alexander M. Capron, “Legal and Regulatory Standards of Informed Consent in Research,” pp. 623–
32; Dan W. Brock, “Philosophical Justifications of Informed Consent in Research,” pp. 607–11; Alan
Meisel and Loren Roth, “What We Do and Do Not Know about Informed Consent,” JAMA: Journal of the
American Medical Association 246 (1981): 2473–77; and President’s Commission, Making Health Care
Decisions, vol. 2, pp. 317–410, esp. p. 318, and vol. 1, chap. 1, esp. pp. 38–39.
58. 58. A classic case is United States Supreme Court, Planned Parenthood of Central Missouri v. Danforth,
428 U.S. 52 at 67 n.8 (1976).
59. 59. See Capron, “Legal and Regulatory Standards of Informed Consent in Research,” pp. 623–28.
60. 60. Moore v. Regents of the University of California, 793 P.2d 479 (Cal. 1990) at 483.
61. 61. See, for example, Clarence H. Braddock et al., “How Doctors and Patients Discuss Routine Clinical
Decisions: Informed Decision Making in the Outpatient Setting,” Journal of General Internal Medicine 12
(1997): 339–45; and John Briguglio et al., “Development of a Model Angiography Informed Consent
Form Based on a Multiinstitutional Survey of Current Forms,” Journal of Vascular and Interventional
Radiology 6 (1995): 971–78.
62. 62. The subjective standard requires a physician to disclose the information a particular patient needs to
know to the extent it is reasonable to expect the physician to be able to determine that patient’s
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informational needs. The Oklahoma Supreme Court supported this standard in Scott v. Bradford, 606 P.2d
554 (Okla. 1979) at 559 and Masquat v. Maguire, 638 P.2d 1105, Okla. 1981. For a defense of the
subjective standard as the normative ethical ideal, see Vilius Dranseika, Jan Piasecki, and Marcin
Waligora, “Relevant Information and Informed Consent in Research: In Defense of the Subjective
Standard of Disclosure,” Science and Engineering Ethics 23, no. 1 (2017): 215–25.
63. 63. Robert D. Truog, Walter Robinson, Adrienne Randolph, and Alan Morris, “Is Informed Consent
Always Necessary for Randomized, Controlled Trials?” Sounding Board, New England Journal of
Medicine 340 (March 11, 1999): 804–7; and Ruth R. Faden, Tom L. Beauchamp, and Nancy E. Kass,
“Informed Consent, Comparative Effectiveness, and Learning Health Care,” New England Journal of
Medicine 370 (Feb. 20, 2014): 766-68.
64. 64. The literature on the ethical controversy about informed consent in the SUPPORT study is extensive.
For an introduction to the issues, see American Journal of Bioethics 13, no. 12 (2013): 1526–61,
particularly David Magnus, “The SUPPORT Controversy and the Debate over Research within the
Standard of Care”; David Wendler, “What Should Be Disclosed to Research Participants?”; Ruth Macklin
and Lois Shepherd, “Informed Consent and Standard of Care: What Must Be Disclosed”; and Benjamin S.
Wilfond, “Quality Improvement Ethics: Lessons from the SUPPORT Study,” along with several
responses.
65. 65. Canterbury v. Spence, 464 F.2d 772 (1977), at 785–89; and see Nathan A. Bostick, Robert Sade, John
W. McMahon, and Regina Benjamin, “Report of the American Medical Association Council on Ethical
and Judicial Affairs: Withholding Information from Patients: Rethinking the Propriety of ‘Therapeutic
Privilege,’” Journal of Clinical Ethics 17 (Winter 2006): 302–6, pdf available at
https://www.researchgate.net/publication/6475405_Report_of_the_American_Medical_Association_Coun
cil_on_Ethical_and_Judicial_Affairs_withholding_information_from_patients_rethinking_the_propriety_
of_therapeutic_privilege (accessed May 7, 2018). For studies of levels of anxiety and stress produced by
informed consent disclosures, see Jeffrey Goldberger et al., “Effect of Informed Consent on Anxiety in
Patients Undergoing Diagnostic Electrophysiology Studies,” American Heart Journal 134 (1997): 119–26;
and Kenneth D. Hopper et al., “The Effect of Informed Consent on the Level of Anxiety in Patients Given
IV Contrast Material,” American Journal of Roentgenology 162 (1994): 531–35.
66. 66. Thornburgh v. American College of Obstetricians, 476 U.S. 747 (1986) (White, J., dissenting).
67. 67. For a report congenial to our conclusion, see Bostick, Sade, McMahon, and Benjamin, “Report of the
American Medical Association Council on Ethical and Judicial Affairs: Withholding Information from
Patients: Rethinking the Propriety of ‘Therapeutic Privilege,’” pp. 302–6. The term therapeutic privilege
does not appear in the current AMA Code. See Code of Medical Ethics of the American Medical
Association, 2016–2017 Edition (Chicago: AMA, 2017), 2.1.3, “Withholding Information from Patients.”
This code stresses dispensing information in accord with patients’ preferences and hence their autonomous
choices.
68. 68. Asbjørn Hróbjartsson and Peter C Gøtzsche, “Placebo Interventions for All Clinical Conditions
(Review),” The Cochrane Collaboration (Chichester, UK: John Wiley, 2010), available at
https://nordic.cochrane.org/sites/nordic.cochrane.org/files/public/uploads/ResearchHighlights/Placebo%20
interventions%20for%20all%20clinical%20conditions%20(Cochrane%20review) (accessed October
11, 2018).
69. 69. Howard Brody, Placebos and the Philosophy of Medicine: Clinical, Conceptual, and Ethical Issues
(Chicago: University of Chicago Press, 1980), pp. 10–11.
70. 70. Ted J. Kaptchuk, Elizabeth Friedlander, John M. Kelley, et al., “Placebos without Deception: A
Randomized Controlled Trial in Irritable Bowel Syndrome,” PLOS One 5 (2010), available at
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0015591 (accessed October 11, 2018).
71. 71. Michael E. Wechsler, John M. Kelley, Ingrid O. E. Boyd, et al., “Active Albuterol or Placebo, Sham
Acupuncture, or No Intervention in Asthma,” New England Journal of Medicine 365 (July 14, 2011): 119–
26.
72. 72. Jon C. Tilburt, Ezekiel J. Emanuel, Ted J. Kaptchuk, et al., “Prescribing ‘Placebo Treatments’: Results
of National Survey of US Internists and Rheumatologists,” BMJ 337 (2008): a1938. Similar results have
been reported in studies in other countries. See, for example, Corey S. Harris, Natasha K. J. Campbell, and
Amir Raz, “Placebo Trends across the Border: US versus Canada,” PLOS One 10, no. 11 (2015):
https://www.researchgate.net/publication/6475405_Report_of_the_American_Medical_Association_Council_on_Ethical_and_Judicial_Affairs_withholding_information_from_patients_rethinking_the_propriety_of_therapeutic_privilege
https://nordic.cochrane.org/sites/nordic.cochrane.org/files/public/uploads/ResearchHighlights/Placebo%20interventions%20for%20all%20clinical%20conditions%20(Cochrane%20review)
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0015591
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e0142804; and J. Howick, F. L. Bishop, C. Heneghan, et al., “Placebo Use in the United Kingdom: Results
from a National Survey of Primary Care Practitioners,” PLOS One 8, no. 3 (2013): e58247.
73. 73. Sara Chandros Hull, Luana Colloca, Andrew Avins, et al., “Patients’ Attitudes about the Use of
Placebo Treatments: Telephone Survey,” BMJ 347 (2013); f3757. Most also favored transparency and
honesty. The place and ethics of placebos in medicine have also received considerable attention in
magazines for the public. See Michael Specter, “The Power of Nothing: Could Studying the Placebo
Effect Change the Way We Think about Medicine?” New Yorker, December 12, 2011; and Elaine
Schattner, “The Placebo Debate: Is It Unethical to Prescribe Them to Patients?” Atlantic, December 19,
2011.
74. 74. On the merit of these arguments, see Anne Barnhill, “What It Takes to Defend Deceptive Placebo
Use,” Kennedy Institute of Ethics Journal 21 (2011): 219–50. See also Sissela Bok, “Ethical Issues in Use
of Placebo in Medical Practice and Clinical Trials,” in The Science of the Placebo: Toward an
Interdisciplinary Research Agenda, ed. Harry A. Guess, Arthur Kleinman, John W. Kusek, and Linda W.
Engel (London: BMJ Books, 2002), pp. 53–74.
75. 75. For a similar proposal, see Armand Lione, “Ethics of Placebo Use in Clinical Care” (Correspondence),
Lancet 362 (September 20, 2003): 999. For cases involving the different appeals to “consent,” along with
analysis and assessment, see P. Lichtenberg, U. Heresco-Levy, and U. Nitzan, “The Ethics of the Placebo
in Clinical Practice,” Journal of Medical Ethics 30 (2004): 551–54; and “Case Vignette: Placebos and
Informed Consent,” Ethics and Behavior 8 (1998): 89–98, with commentaries by Jeffrey Blustein, Walter
Robinson, Gregory S. Loeben, and Benjamin S. Wilfond.
76. 76. Code of Medical Ethics of the American Medical Association, 2016–2017 Edition, 2.1.4, “Use of
Placebo in Clinical Practice.” For a criticism of an earlier, but somewhat similar, version of this policy, see
both Bennett Foddy, “A Duty to Deceive: Placebos in Clinical Practice,” American Journal of Bioethics 9,
no. 12 (2009): 4–12 (and his response to commentaries in the same issue, W1–2); and Adam Kolber, “A
Limited Defense of Clinical Placebo Deception,” Yale Law & Policy Review 26 (2007): 75–134. For a
defense of the earlier version, see Kavita R. Shah and Susan Door Goold, “The Primacy of Autonomy,
Honesty, and Disclosure—Council on Ethical and Judicial Affairs’ Placebo Opinions,” American Journal
of Bioethics 9, no. 12 (2009): 15–17. For an analysis of the science and ethics of placebo treatment, see
Franklin G. Miller and Luana Colloca, “The Legitimacy of Placebo Treatments in Clinical Practice:
Evidence and Ethics,” American Journal of Bioethics 9, no. 12 (2009): 39–47; and Damien G. Finnis, Ted
J. Kaptchuk, Franklin G. Miller, and Fabrizio Benedetti, “Biological, Clinical, and Ethical Advances of
Placebo Effects,” Lancet 375, no. 9715 (February 20, 2010): 696–95. See also N. Biller-Andorno, “The
Use of the Placebo Effect in Clinical Medicine—Ethical Blunder or Ethical Imperative?” Science and
Engineering Ethics 10 (2004): 43–50.
77. 77. Kaptchuk, Friedlander, Kelley, et al., “Placebos without Deception”; Brody, Placebos and the
Philosophy of Medicine, pp. 110, 113, et passim; and Brody, “The Placebo Response: Recent Research and
Implications for Family Medicine,” Journal of Family Practice 49 (July 2000): 649–54. For a broad
defense of placebos, see Howard Spiro, Doctors, Patients, and Placebos (New Haven, CT: Yale
University Press, 1986).
78. 78. See Fabrizio Benedetti, “Mechanisms of Placebo and Placebo-Related Effects across Diseases and
Treatments,” Annual Review of Pharmacology and Toxicology 48 (2008): 33–60, and more fully
developed in his Placebo Effects: Understanding the Mechanisms in Health and Disease (New York:
Oxford University Press, 2009). Benedetti focuses on the “psychosocial-induced biochemical changes in a
person’s brain and body.”
79. 79. See Yael Schenker, Alicia Fernandez, and Bernard Lo, “Placebo Prescriptions Are Missed
Opportunities for Doctor-Patient Communication,” American Journal of Bioethics 9 (2009): 48–50; and
Howard Brody, “Medicine’s Continuing Quest for an Excuse to Avoid Relationships with Patients,”
American Journal of Bioethics 9 (2009): 13–15.
80. 80. Sally E. McNagy and Ruth M. Parker, “High Prevalence of Recent Cocaine Use and the Unreliability
of Patient Self-Report in an Inner-City Walk-in Clinic,” JAMA: Journal of the American Medical
Association 267 (February 26, 1992): 1106–8.
81. 81. Sissela Bok, “Informed Consent in Tests of Patient Reliability,” JAMA: Journal of the American
Medical Association 267 (February 26, 1992): 1118–19.
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82. 82. Barbara A. Bernhardt et al., “Educating Patients about Cystic Fibrosis Carrier Screening in a Primary
Care Setting,” Archives of Family Medicine 5 (1996): 336–40; Leanne Stunkel, Meredith Benson, Louise
McLellan, et al., “Comprehension and Informed Consent: Assessing the Effect of a Short Consent Form,”
IRB 32 (2010): 1–9; and James H. Flory, David Wendler, and Ezekiel J. Emanuel, “Empirical Issues in
Informed Consent for Research,” in The Oxford Textbook of Clinical Research Ethics, ed. Emanuel,
Grady, Crouch, et al., pp. 645–60.
83. 83. Steven Joffe, E. Francis Cook, Paul D. Cleary, et al., “Quality of Informed Consent in Cancer Clinical
Trials: A Cross-Sectional Survey,” Lancet 358 (November 24, 2001): 1772–77. See further Joffe, Cook,
Cleary, et al., “Quality of Informed Consent: A New Measure of Understanding among Research
Subjects,” JNCI: Journal of the National Cancer Institute 93 (January 17, 2001): 139–47; and Michael
Jefford and Rosemary Moore, “Improvement of Informed Consent and the Quality of Consent
Documents,” Lancet Oncology 9 (2008): 485–93.
84. 84. Bang v. Charles T. Miller Hospital, 88 N.W. 2d 186, 251 Minn. 427, 1958 Minn.
85. 85. See further Gopal Sreenivasan, “Does Informed Consent to Research Require Comprehension?”
Lancet 362 (December 13, 2003): 2016–18.
86. 86. C. K. Dougherty et al., “Perceptions of Cancer Patients and Their Physicians Involved in Phase I
Clinical Trials,” Journal of Clinical Oncology 13 (1995): 1062–72; and Paul R. Benson et al.,
“Information Disclosure, Subject Understanding, and Informed Consent in Psychiatric Research,” Law
and Human Behavior 12 (1988): 455–75.
87. 87. See further Edmund G. Howe, “Approaches (and Possible Contraindications) to Enhancing Patients’
Autonomy,” Journal of Clinical Ethics 5 (1994): 179–88.
88. 88. See Michael B. Rothberg, Senthil K. Sivalingam, Javed Ashraf, et al., “Patients’ and Cardiologists’
Perceptions of the Benefits of Percutaneous Coronary Intervention for Stable Coronary Disease,” Annals
of Internal Medicine 153 (2010): 307–13. See also the commentary by Alicia Fernandez, “Improving the
Quality of Informed Consent: It Is Not All about the Risks,” Annals of Internal Medicine 153 (2010):
342–43.
89. 89. This label was apparently coined by Paul S. Appelbaum, Loren Roth, and Charles W. Lidz in “The
Therapeutic Misconception: Informed Consent in Psychiatric Research,” International Journal of Law and
Psychiatry 5 (1982): 319–29. See further Appelbaum, Lidz, and Thomas Grisso, “Therapeutic
Misconception in Clinical Research: Frequency and Risk Factors,” IRB: Ethics and Human Research 26
(2004): 1–8; Walter Glannon, “Phase I Oncology Trials: Why the Therapeutic Misconception Will Not Go
Away,” Journal of Medical Ethics 32 (2006): 252–55; Appelbaum and Lidz, “The Therapeutic
Misconception,” in The Oxford Textbook of Clinical Research Ethics, ed. Emanuel, Grady, Crouch, et al.;
Rebecca Dresser, “The Ubiquity and Utility of the Therapeutic Misconception,” Social Philosophy and
Policy 19 (2002): 271–94; and Franklin G. Miller, “Consent to Clinical Research,” in The Ethics of
Consent: Theory and Practice, ed. Miller and Wertheimer, chap. 15. See also Inmaculada de Melo-Martín
and Anita Ho, “Beyond Informed Consent: The Therapeutic Misconception and Trust,” Journal of
Medical Ethics 34 (2008): 202–5.
90. 90. A broader problem and one more difficult to address is that the frame of discourse in interactions
between researchers and potential subjects may incorporate the therapeutic misconception. See Philip J.
Candilis and Charles W. Lidz, “Advances in Informed Consent Research,” in The Ethics of Consent, ed.,
Miller and Wertheimer, p. 334; David E. Ness, Scott Kiesling, and Charles W. Lidz, “Why Does Informed
Consent Fail? A Discourse Analytic Approach,” Journal of the American Academy of Psychiatry and the
Law 37 (2009): 349–62.
91. 91. Sam Horng and Christine Grady, “Misunderstanding in Clinical Research: Distinguishing Therapeutic
Misconception, Therapeutic Misestimation, and Therapeutic Optimism,” IRB: Ethics and Human
Research 25 (January–February 2003): 11–16; and see also Horng, Ezekiel Emanuel, Benjamin Wilfond,
et al., “Descriptions of Benefits and Risks in Consent Forms for Phase 1 Oncology Trials,” New England
Journal of Medicine 347 (2002): 2134–40.
92. 92. The pioneering work was done by Amos Tversky and Daniel Kahneman. See “Choices, Values and
Frames,” American Psychologist 39 (1984): 341–50; and “The Framing of Decisions and the Psychology
of Choice,” Science 211 (1981): 453–58. See also Daniel Kahneman and Amos Tversky, eds., Choices,
Values, and Frames (Cambridge: Cambridge University Press, 2000). On informed consent specifically,
see Dennis J. Mazur and Jon F. Merz, “How Age, Outcome Severity, and Scale Influence General
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Medicine Clinic Patients’ Interpretations of Verbal Probability Terms,” Journal of General Internal
Medicine 9 (1994): 268–71.
93. 93. S. E. Eraker and H. C. Sox, “Assessment of Patients’ Preferences for Therapeutic Outcomes,” Medical
Decision Making 1 (1981): 29–39; Barbara McNeil et al., “On the Elicitation of Preferences for
Alternative Therapies,” New England Journal of Medicine 306 (May 27, 1982): 1259–62.
94. 94. See A. M. O’Connor, C. L. Bennett, D. Stacey, et al., “Decision Aids for People Facing Health
Treatment or Screening Decisions,” Cochrane Database of Systematic Reviews, no. 3 (2009), Art. No.
CD001431; Philip J. Candilis and Charles W. Lidz, “Advances in Informed Consent Research,” chap. 13;
and Barton W. Palmer, Nicole M. Lanouette, and Dilip V. Jeste, “Effectiveness of Multimedia Aids to
Enhance Comprehension of Research Consent Information: A Systematic Review,” IRB: Ethics & Human
Research 34 (2012), available at https://www.thehastingscenter.org/wp-content/uploads/nov-dec12irb-
palmer-tables (accessed May 8, 2018).
95. 95. Ruth Faden and Alan Faden, “False Belief and the Refusal of Medical Treatment,” Journal of Medical
Ethics 3 (1977): 133–36.
96. 96. Neil C. Manson and Onora O’Neill interpret all consent as a waiver of rights. This interpretation is in
some respects correct, but it is more illuminating in most cases to describe informed consent as an
exercise of rights rather than a waiver of rights. Also, consent is not a waiver of all rights. For example, a
patient does not waive his or her right to sue a physician who negligently provides a treatment harmful to
the patient. In a truly informed consent, it should be clearly stated which rights, if any, are waived. See
Manson and O’Neill, Rethinking Informed Consent in Bioethics, esp. pp. 72–77, 187–89. For a challenge
to Manson and O’Neill’s thesis, see Emma Bullock, “Informed Consent as Waiver: The Doctrine
Rethought?” Ethical Perspectives 17 (2010): 529–55, available at http://www.ethical-
perspectives.be/viewpic.php?LAN=E&TABLE=EP&ID=1277 (accessed May 8, 2018).
97. 97. On the last three examples, which we will not further pursue, see Alexander M. Capron, “Legal and
Regulatory Standards of Informed Consent in Research,” pp. 620–22.
98. 98. Cobbs v. Grant, 502 P.2d 1, 12 (1972).
99. 99. Baruch Brody, Life and Death Decision Making (New York: Oxford University Press, 1988), p. 22.
The claim that rights to informed consent are always waivable is challenged in Rosemarie D. C. Bernabe
et al., “Informed Consent and Phase IV Non-Interventional Drug Research,” Current Medical Research
and Opinion 27 (2011): 513–18.
100. 100. The Nuremberg Code, in Trials of War Criminals before the Nuremberg Military Tribunals under
Control Council Law no. 10 (Washington, DC: US Government Printing Office, 1949).
101. 101. See Joel Feinberg, Social Philosophy (Englewood Cliffs, NJ: Prentice Hall, 1973), p. 48; Harm to
Self, pp. 112–18. For a notably different view of the concept of voluntariness and its connection to consent
—one heavily influenced by law—see Paul S. Appelbaum, Charles W. Lidz, and Robert Klitzman,
“Voluntariness of Consent to Research: A Conceptual Model,” Hastings Center Report 39 (January–
February 2009): 30–39, esp. 30–31, 33; and a criticism of Appelbaum, Lidz, and Klitzman in Robert M.
Nelson, Tom L. Beauchamp, Victoria A. Miller, et al., “The Concept of Voluntary Consent,” American
Journal of Bioethics 11 (2011): 6–16, esp. 12–13.
102. 102. Our formulation is indebted to Robert Nozick, “Coercion,” in Philosophy, Science and Method:
Essays in Honor of Ernest Nagel, ed. Sidney Morgenbesser, Patrick Suppes, and Morton White (New
York: St. Martin’s, 1969), pp. 440–72; and Bernard Gert, “Coercion and Freedom,” in Coercion: Nomos
XIV, ed. J. Roland Pennock and John W. Chapman (Chicago: Aldine, Atherton, 1972), pp. 36–37. See in
addition Alan Wertheimer, Coercion (Princeton, NJ: Princeton University Press, 1987).
103. 103. Cf. Jennifer S. Hawkins and Ezekiel J. Emanuel, “Clarifying Confusions about Coercion,” Hastings
Center Report 35 (September–October 2005): 16–19.
104. 104. For different views about the concept and ethics of manipulation, see Christian Coons and Michael
Weber, eds., Manipulation: Theory and Practice (New York: Oxford University Press, 2014); Mark D.
White, The Manipulation of Choice: Ethics and Libertarian Paternalism (New York: Palgrave Macmillan,
2013); Robert Noggle, “Manipulation, Salience, and Nudges,” Bioethics 32, no. 3 (2018): 164–70; and
Noggle, “The Ethics of Manipulation,” The Stanford Encyclopedia of Philosophy (Summer 2018 Edition),
ed. Edward N. Zalta, available at https://plato.stanford.edu/archives/sum2018/entries/ethics-manipulation/
(accessed October 8, 2018).
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105. 105. See James H. Jones, Bad Blood, rev. ed. (New York: Free Press, 1993); David J. Rothman, “Were
Tuskegee & Willowbrook ‘Studies in Nature’?” Hastings Center Report 12 (April 1982): 5–7; Susan M.
Reverby, ed., Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study (Chapel Hill: University of North
Carolina Press, 2000); Reverby, Examining Tuskegee: The Infamous Syphilis Study and Its Legacy (Chapel
Hill: University of North Carolina Press, 2009); and Ralph V. Katz and Rueben Warren, eds., The Search
for the Legacy of the USPHS Syphilis Study at Tuskegee: Reflective Essays Based upon Findings from the
Tuskegee Legacy Project (Lanham, MD: Lexington Books, 2011).
106. 106. See Sarah E. Hewlett, “Is Consent to Participate in Research Voluntary,” Arthritis Care and Research
9 (1996): 400–404; Victoria Miller et al., “Challenges in Measuring a New Construct: Perception of
Voluntariness for Research and Treatment Decision Making,” Journal of Empirical Research on Human
Research Ethics 4 (2009): 21–31; and Nancy E. Kass et al., “Trust: The Fragile Foundation of
Contemporary Biomedical Research,” Hastings Center Report 26 (September–October 1996): 25–29.
107. 107. See Charles W. Lidz et al., Informed Consent: A Study of Decision Making in Psychiatry (New York:
Guilford, 1984), chap. 7, esp. pp. 110–11, 117–23.
108. 108. U.S. federal regulations for research involving human subjects require “additional safeguards … to
protect the rights and welfare” of subjects “likely to be vulnerable to coercion or undue influence, such as
children, prisoners, individuals with impaired decision-making capacity, or economically or educationally
disadvantaged persons,” but the key concepts are inadequately analyzed and the list of groups is not
uncontroversial. See Code of Federal Regulations, title 45, Public Welfare, Department of Health and
Human Services, Part 46, Protection of Human Subjects, Subpart A (“Common Rule”), as revised in 2017
with general implementation January 21, 2019. For examinations of possible types of vulnerability in
research involving human subjects, see Kenneth Kipnis, “Vulnerability in Research Subjects: A Bioethical
Taxonomy,” in National Bioethics Advisory Commission, Ethical and Policy Issues in Research Involving
Human Participants, vol. 2 (Bethesda, MD: National Bioethics Advisory Commission, 2001): G1–13; and
James DuBois, “Vulnerability in Research,” in Institutional Review Board: Management and Function,
2nd ed., ed. Robert Amdur and Elizabeth Bankert (Boston: Jones & Bartlett, 2005), pp. 337–40.
109. 109. For the distinction between decisional autonomy and executional autonomy, see Bart J. Collopy,
“Autonomy in Long Term Care,” Gerontologist 28, Supplementary Issue (June 1988): 10–17. On failures
to appreciate both capacity and incapacity, see C. Dennis Barton et al., “Clinicians’ Judgement of Capacity
of Nursing Home Patients to Give Informed Consent,” Psychiatric Services 47 (1996): 956–60; and
Meghan B. Gerety et al., “Medical Treatment Preferences of Nursing Home Residents,” Journal of the
American Geriatrics Society 41 (1993): 953–60.
110. 110. Superintendent of Belchertown State School v. Saikewicz, Mass. 370 N.E. 2d 417 (1977).
111. 111. For a survey of research on substituted judgment, see Daniel P. Sulmasy, “Research in Medical
Ethics: Scholarship in ‘Substituted Judgment,’” in Methods in Medical Ethics, 2nd ed., ed. Jeremy
Sugarman and Daniel P. Sulmasy (Washington, DC: Georgetown University Press, 2010), pp. 295–314.
For recent debates about conceptions and implementation of substituted judgment, see several articles in
the Journal of Medical Ethics 41 (September 2015).
112. 112. See Rohit Devnani, James E. Slaven, Jr., Gabriel T. Bosslet, et al., “How Surrogates Decide: A
Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older
Adults,” Journal of General Internal Medicine 32 (2017): 1285–93.
113. 113. See, for example, In the Matter of the Application of John Evans against Bellevue Hospital, Supreme
Court of the State of New York, Index No. 16536/87 (1987).
114. 114. A. D. Firlik, “Margo’s Logo” (Letter), JAMA: Journal of the American Medical Association 265
(1991): 201.
115. 115. Ronald Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia, and Individual
Freedom (New York: Knopf, 1993), pp. 221–29.
116. 116. President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society
(Washington, DC: President’s Council on Bioethics, September 2005), p. 84. The President’s Council
draws in part on the work of one of its members, Rebecca Dresser, “Dworkin on Dementia: Elegant
Theory, Questionable Policy,” Hastings Center Report 25 (November–December 1995): 32–38.
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5
Nonmaleficence
The principle of nonmaleficence obligates us to abstain from causing harm to others. In medical ethics this
principle has often been treated as effectively identical to the celebrated maxim Primum non nocere: “Above all
[or first] do no harm.” Often proclaimed the fundamental principle in the Hippocratic tradition, this principle
does not appear in the Hippocratic writings, and a venerable statement sometimes confused with it—“at least, do
no harm”—is a strained translation of a single Hippocratic passage.1 Nonetheless, the Hippocratic oath
incorporates both an obligation of nonmaleficence and an obligation of beneficence: “I will use treatment to help
the sick according to my ability and judgment, but I will never use it to injure or wrong them.”
This chapter explores the principle of nonmaleficence and its implications for several areas of biomedical ethics
where harms may occur. We examine distinctions between killing and allowing to die, intending and foreseeing
harmful outcomes, withholding and withdrawing life-sustaining treatments, as well as controversies about the
permissibility of physicians assisting seriously ill patients in bringing about their deaths. The terminally ill and
the critically ill and injured are featured in many of these discussions. The framework for decision making about
life-sustaining procedures and assistance in dying that we defend would alter certain central features in
traditional medical practice for both competent and incompetent patients. Central to our framework is a
commitment to, rather than suppression of, quality-of-life judgments. This chapter also addresses moral
problems in the protection of incompetent patients through advance directives and surrogate decision makers as
well as special issues in decision making about children. Finally, the chapter examines the underprotection and
the overprotection of subjects of research through public and institutional policies; and we also examine harms
that can befall individuals and groups from unduly broad forms of consent in research on stored biological
samples.
THE CONCEPT AND PRINCIPLE OF NONMALEFICENCE
The Distinction between the Principles of Nonmaleficence and Beneficence
Many ethical theories recognize a principle of nonmaleficence.2 Some philosophers combine nonmaleficence
with beneficence to form a single principle. William Frankena, for example, divides the principle of beneficence
into four general obligations, the first of which we identify as the principle and obligation of nonmaleficence and
the other three of which we refer to as principles and obligations of beneficence:
1. 1. One ought not to inflict evil or harm.
2. 2. One ought to prevent evil or harm.
3. 3. One ought to remove evil or harm.
4. 4. One ought to do or promote good.3
If we were to bring these ideas of benefiting others and not injuring them under a single principle, we would be
forced to note, as did Frankena, the several distinct obligations embedded in this general principle. In our view,
conflating nonmaleficence and beneficence into a single principle obscures critical moral distinctions as well as
different types of moral theory. Obligations not to harm others, such as those prohibiting theft, disabling, and
killing, are distinct from obligations to help others, such as those prescribing the provision of benefits, protection
of interests, and promotion of welfare.
Obligations not to harm others are sometimes more stringent than obligations to help them, but the reverse is
also true. If in a particular case a health care provider inflicts a minor injury—swelling from a needlestick, say—
but simultaneously provides a major benefit such as saving the patient’s life, it is justified to conclude that the
obligation of beneficence takes priority over the obligation of nonmaleficence in this case.4 In many situations,
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inflicting surgical harm to improve a patient’s chance of survival, introducing social burdens to protect the
public’s health, and subjecting some research subjects to risks to generate valuable knowledge can all be
justified by the intended benefits.
One might try to reformulate the common (but ultimately flawed) idea of nonmaleficence’s increased stringency
as follows: Obligations of nonmaleficence are usually more stringent than obligations of beneficence, and
nonmaleficence may override beneficence, even if the best utilitarian outcome would be obtained by acting
beneficently. If a surgeon, for example, could save two innocent lives by killing a prisoner on death row to
retrieve his heart and liver for transplantation, this outcome of saving two lives would have the highest net utility
under the circumstances, but the surgeon’s action would be morally indefensible.
This formulation of stringency with respect to nonmaleficence has an initial ring of plausibility, but we need to
be especially cautious about constructing axioms of priority. Nonmaleficence does sometimes override other
principles, but the weights of these moral principles vary in different circumstances. In our view, no rule in
ethics favors avoiding harm over providing benefit in every circumstance, and claims that an order of priority
exists among elements 1 through 4 in Frankena’s scheme is unsustainable.
Rather than attempting to structure a hierarchical ordering, we group the principles of nonmaleficence and
beneficence into four norms that do not have an a priori rank order:
Nonmaleficence
1. 1. One ought not to inflict evil or harm.
Beneficence
1. 2. One ought to prevent evil or harm.
2. 3. One ought to remove evil or harm.
3. 4. One ought to do or promote good.
Each of the three principles of beneficence requires taking action by helping—preventing harm, removing harm,
and promoting good—whereas nonmaleficence requires only intentional avoidance of actions that cause harm.
Rules of nonmaleficence therefore take the form “Do not do X.” Some philosophers accept only principles or
rules that take this proscriptive form. They even limit rules of respect for autonomy to rules of the form “Do not
interfere with a person’s autonomous choices.” These philosophers reject all principles or rules that require
helping, assisting, or rescuing other persons, although they recognize these norms as legitimate moral ideals.5
However, the mainstream of moral philosophy does not accept this sharp distinction between moral obligations
of refraining and moral ideals of helping. Instead, it recognizes and preserves the relevant distinctions by
distinguishing obligations of refraining from inflicting harm and obligations of helping. We take the same view,
and in Chapter 6 (pp. 218–24), we explain further the nature of the distinction.
Legitimate disagreements arise about how to classify actions under categories 1 through 4 as well as about the
nature and stringency of the obligations that arise from them. Consider the following case: Robert McFall was
dying of aplastic anemia, and his physicians recommended a bone marrow transplant from a genetically
compatible donor to increase his chances of living one additional year from 25% to a range of 40% to 60%. The
patient’s cousin, David Shimp, agreed to undergo tests to determine his suitability as a donor. After completing
the test for tissue compatibility, he refused to undergo the test for genetic compatibility. He had changed his
mind about donation. Robert McFall’s lawyer asked a court to compel Shimp to undergo the second test and
donate his bone marrow if the test indicated a good match.6
Public discussion focused on whether Shimp had an obligation of beneficence toward McFall in the form of an
obligation to prevent harm, to remove harm, or to promote McFall’s welfare. Though ultimately unsuccessful,
McFall’s lawyer contended that even if Shimp did not have a legal obligation of beneficence to rescue his
cousin, he did have a legal obligation of nonmaleficence, which required that he not make McFall’s situation
worse. The lawyer argued that when Shimp agreed to undergo the first test and then backed out, he caused a
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“delay of critical proportions” that constituted a violation of the obligation of nonmaleficence. The judge ruled
that Shimp did not violate any legal obligation but also held that his actions were “morally indefensible.”7
This case illustrates difficulties of identifying specific obligations under the principles of beneficence and
nonmaleficence and shows the importance of specifying these principles (as discussed in our Chapters 1 and 10)
to handle circumstances such as those of donating organs or tissues, withholding life-sustaining treatments,
hastening the death of a dying patient, and biomedical research involving both human and animal subjects.
The Concept of Harm
The concept of nonmaleficence has been explicated by the concepts of harm and injury, but we will confine our
analysis to harm. This term has both a normative and a nonnormative use. “X harmed Y” sometimes means that
X wronged Y or treated Y unjustly, but it sometimes only means that X’s action had an adverse effect on Y’s
interests. As we use these notions, wronging involves violating someone’s rights, but harming need not signify
such a violation. People are harmed without being wronged through attacks by disease, natural disasters, bad
luck, and acts of others to which the harmed person has consented.8 People can also be wronged without being
harmed. For example, if an insurance company improperly refuses to pay a patient’s hospital bill and the hospital
shoulders the full bill, the insurance company wrongs the patient without harming him or her.
We construe harm as follows: A harm is a thwarting, defeating, or setting back of some party’s interests, but a
harmful action is not always wrong or unjustified.9 Harmful actions that involve justifiable setbacks to another’s
interests are not wrong—for example, justified amputation of a consenting patient’s leg, justified punishment of
physicians for incompetence or negligence, justified demotion of employees for poor performance, and some
forms of research involving animals. Nevertheless, the principle of nonmaleficence is a prima facie principle that
requires the justification of harmful actions. This justification may come from showing that the harmful actions
do not infringe specific obligations of nonmaleficence or that the infringements are outweighed by other ethical
principles and rules.
Some definitions of harm are so broad that they include setbacks to interests in reputation, property, privacy, and
liberty or, in some writings, discomfort, humiliation, and annoyance. Such broad conceptions can still
distinguish trivial harms from serious harms by the magnitude of the interests affected. Other accounts with a
narrower focus view harms exclusively as setbacks to physical and psychological interests, such as those in
health and survival.
Whether a broad or a narrow construal is preferable is not a matter we need to decide here. Although harm is a
contested concept, significant bodily harms and setbacks to other significant interests are paradigm instances of
harm. We concentrate on physical and mental harms, especially pain, disability, suffering, and death, while
recognizing other setbacks to interests. Intending, causing, and permitting death or the risk of death are
especially important subjects.
Rules Specifying the Principle of Nonmaleficence
The principle of nonmaleficence supports several more specific moral rules (although principles other than
nonmaleficence help justify some of these rules).10 Examples of more specific rules include the following:11
1. 1. Do not kill.
2. 2. Do not cause pain or suffering.
3. 3. Do not incapacitate.
4. 4. Do not cause offense.
5. 5. Do not deprive others of the goods of life.
Both the principle of nonmaleficence and its specifications into these moral rules are prima facie binding, not
absolute.
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Negligence and the Standard of Due Care
Obligations of nonmaleficence include not only obligations not to inflict harms, but also obligations not to
impose risks of harm. A person can harm or place another person at risk without malicious or harmful intent, and
the agent of harm may or may not be morally or legally responsible for the harms. In some cases agents are
causally responsible for a harm that they did not intend or know about. For example, if cancer rates are elevated
at a chemical plant as the result of exposure to a chemical not previously suspected as a carcinogen, the
employer has placed its workers at risk by its decisions or actions, even though the employer did not
intentionally or knowingly cause the harm.
In cases of risk imposition, both law and morality recognize a standard of due care that determines whether the
agent who is causally responsible for the risk is legally or morally responsible as well. This standard is a
specification of the principle of nonmaleficence. Due care is taking appropriate care to avoid causing harm, as
the circumstances demand of a reasonable and prudent person. This standard requires that the goals pursued
justify the risks that must be imposed to achieve those goals. Grave risks require commensurately momentous
goals for their justification. Serious emergencies justify risks that many nonemergency situations do not justify.
For example, attempting to save lives after a major accident justifies, within limits, dangers created by rapidly
moving emergency vehicles. A person who takes due care in this context does not violate moral or legal rules
even if significant risk for other parties is inherent in the attempted rescue.
Negligence falls short of due care. In professions, negligence involves a departure from the professional
standards that determine due care in given circumstances. The term negligence covers two types of situations:
(1) intentionally imposing unreasonable risks of harm (advertent negligence or recklessness) and (2)
unintentionally but carelessly imposing risks of harm (inadvertent negligence). In the first type, an agent
knowingly imposes an unwarranted risk: For example, a nurse knowingly fails to change a bandage as
scheduled, creating an increased risk of infection. In the second type, an agent unknowingly performs a harmful
act that he or she should have known to avoid: For example, a physician acts negligently if he or she knows but
forgets that a patient does not want to receive certain types of information and discloses that information,
causing fear and shame in the patient. Both types of negligence are morally blameworthy, although some
conditions may mitigate blameworthiness.12
In treating negligence, we will concentrate on conduct that falls below a standard of due care that law or
morality establishes to protect others from the careless imposition of risks. Courts must determine responsibility
and liability for harm, when a patient, client, or consumer seeks compensation for setbacks to interests or
punishment of a responsible party, or both. We will not concentrate on legal liability and instead will adapt parts
of the legal model of responsibility for harmful action to formulate moral responsibility for harm caused by
health care professionals. The following are essential elements in this professional model of due care:
1. 1. The professional must have a duty to the affected party.
2. 2. The professional must breach that duty.
3. 3. The affected party must experience a harm.
4. 4. The harm must be caused by the breach of duty.
Professional malpractice is an instance of negligence that involves failure to follow professional standards of
care.13 By entering into the profession of medicine, physicians accept a responsibility to observe the standards
specific to their profession. When a therapeutic relationship proves harmful or unhelpful, malpractice occurs if
and only if physicians do not meet professional standards of care. For example, in Adkins v. Ropp the Supreme
Court of Indiana considered a patient’s claim that a physician acted negligently in removing foreign matter from
the patient’s eye:
When a physician and surgeon assumes to treat and care for a patient, in the absence of a special
agreement, he is held in law to have impliedly contracted that he possesses the reasonable and
ordinary qualifications of his profession and that he will exercise at least reasonable skill, care, and
diligence in his treatment of him. This implied contract on the part of the physician does not include
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a promise to effect a cure and negligence cannot be imputed because a cure is not effected, but he
does impliedly promise that he will use due diligence and ordinary skill in his treatment of the
patient so that a cure may follow such care and skill. This degree of care and skill is required of
him, not only in performing an operation or administering first treatments, but he is held to the same
degree of care and skill in the necessary subsequent treatments unless he is excused from further
service by the patient himself, or the physician or surgeon upon due notice refuses to further treat
the case.14
The line between due care and inadequate care is sometimes difficult to draw. Increased safety measures in
epidemiological and toxicological studies, educational and health promotional programs, and other training
programs can sometimes reduce health risks. However, a substantial question remains about the lengths to which
physicians, employers, and others must go to avoid or to lower risks—a moral problem of determining the scope
of obligations of nonmaleficence.
DISTINCTIONS AND RULES GOVERNING NONTREATMENT DECISIONS
Religious traditions, philosophical discourse, professional codes, public policy, and law have developed many
guidelines to specify the requirements of nonmaleficence in health care, particularly with regard to treatment and
nontreatment decisions. Some of these guidelines are helpful, but others need revision or replacement. Many
draw heavily on at least one of the following distinctions:
1. 1. Withholding and withdrawing life-sustaining treatment
2. 2. Medical treatments and artificial nutrition and hydration
3. 3. Intended effects and merely foreseen effects
Although at times influential in medicine and law, these distinctions, we will argue, are outmoded and need to be
replaced. The venerable position that these traditional distinctions have occupied in professional codes,
institutional policies, and writings in biomedical ethics by itself provides no warrant for retaining them when
they are obsolete, no longer helpful, and sometimes even morally dangerous.
Withholding and Withdrawing Treatments
Debate about the principle of nonmaleficence and forgoing life-sustaining treatments has centered on the
omission-commission distinction, especially the distinction between withholding (not starting) and withdrawing
(stopping) treatments. Many professionals and family members feel justified in withholding treatments they
never started, but not in withdrawing treatments already initiated. They sense that decisions to stop treatments
are more momentous, consequential, and morally fraught than decisions not to start them. Stopping a respirator,
for example, seems to many to cause a person’s death, whereas not starting the respirator does not seem to have
this same causal role.15
In one case, an elderly man suffered from several major medical problems with no reasonable chance of
recovery. He was comatose and unable to communicate. Antibiotics to fight infection and an intravenous (IV)
line to provide nutrition and hydration kept him alive. No evidence indicated that he had expressed his wishes
about life-sustaining treatments while competent, and he had no family member to serve as a surrogate decision
maker. Physicians and staff quickly agreed on a “no code” or “do not resuscitate” (DNR) order, a signed order
not to attempt cardiopulmonary resuscitation if a cardiac or respiratory arrest occurred. In the event of such an
arrest, the patient would be allowed to die. The staff felt comfortable with this decision because of the patient’s
overall condition and prognosis, and because they could view not resuscitating the patient as withholding rather
than withdrawing treatment.
Questions arose about whether to continue the interventions in place. Some members of the health care team
thought that they should stop all medical treatments, including antibiotics and artificial nutrition and hydration,
because, in their language, these treatments were “extraordinary” or “heroic.”16 Others thought it wrong to stop
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these treatments once they had been started. A disagreement erupted about whether it would be permissible not
to insert the IV line again if it became infiltrated—that is, if it broke through the blood vessel and began leaking
fluid into surrounding tissue. Some who had opposed stopping treatments were comfortable with not inserting
the IV line again, because they viewed the action as withholding rather than withdrawing. They emphatically
opposed reinsertion if it required a cutdown (an incision to gain access to the deep large blood vessels) or a
central line. Others viewed the provision of artificial nutrition and hydration as a single process and felt that
inserting the IV line again was simply continuing what had been interrupted. For them, not restarting was
equivalent to withdrawing and thus, unlike withholding, morally wrong.17
In many similar cases caregivers’ discomfort about withdrawing life-sustaining treatments appears to reflect the
view that such actions render them causally responsible and morally or legally culpable for a patient’s death,
whereas they are not responsible if they never initiate a life-sustaining treatment. The conviction that starting a
treatment often creates valid claims or expectations for its continuation is another source of caregiver
discomfort. Only if patients waive the claim for continued treatment does it seem legitimate to many caregivers
to stop procedures. Otherwise, stopping procedures appears to breach expectations, promises, or contractual
obligations to the patient, family, or surrogate decision maker. Patients for whom physicians have not initiated
treatment seem to hold no parallel claim.18
Feelings of reluctance about withdrawing treatments are understandable, but the distinction between
withdrawing and withholding treatments is morally irrelevant and potentially dangerous. The distinction is
unclear, inasmuch as withdrawing can happen through an omission (withholding) such as not recharging
batteries that power respirators or not putting the infusion into a feeding tube. In multi-staged treatments,
decisions not to start the next stage of a treatment plan can be tantamount to stopping treatment, even if the early
phases of the treatment continue.
Both not starting and stopping can be justified, depending on the circumstances. Both can be instances of
allowing to die, and both can be instances of killing. Courts recognize that individuals can commit a crime by
omission if they have an obligation to act, just as physicians can commit a wrong by omission in medical
practice. Such judgments depend on whether a physician has an obligation either not to withhold or not to
withdraw treatment. In these cases if a physician has a duty to treat, omission of treatment breaches this duty,
whether or not withholding or withdrawing is involved. However, if a physician does not have a duty to treat or
has a duty not to treat, omission of either type involves no moral violation. Indeed, if the physician has a duty
not to treat, it would be morally wrong to start the treatment or to continue the treatment if it has already begun.
In a classic case (to be discussed further later in this chapter), a court raised the following legal problem about
continuing kidney dialysis for Earle Spring, an elderly patient with numerous medical problems: “The question
presented by … modern technology is, once undertaken, at what point does it cease to perform its intended
function?” The court held that “a physician has no duty to continue treatment, once it has proven to be
ineffective.” The court emphasized the need to balance benefits and burdens to determine overall
effectiveness.19 Although legal responsibility cannot be equated with moral responsibility in such cases, the
court’s conclusion is consistent with the moral conclusions about justified withdrawal for which we are presently
arguing. Approximately one in four deaths of patients with end-stage renal disease in the United States occurs
after a decision to withdraw dialysis.20 The practice is common, and the decisions are often justified.21
Giving priority to withholding over withdrawing treatment can lead to overtreatment in some cases, that is, the
continuation of no longer beneficial or desirable treatment for the patient. Less obviously, the distinction can
lead to undertreatment. Patients and families may worry about being trapped by biomedical technology that,
once begun, cannot be stopped. To circumvent this problem, they may become reluctant to authorize the
technology even when it could possibly benefit the patient. Health care professionals sometimes display the
same reluctance. In one case, a seriously ill newborn died after several months of treatment, much of it against
the parents’ wishes, because a physician was unwilling to stop the respirator once it had been connected. Later
this physician reportedly felt “less eager to attach babies to respirators now.”22
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The moral burden of proof is often heavier when the decision is to withhold rather than to withdraw treatments.
Only after starting treatments will it be possible, in many cases, to make a proper diagnosis and prognosis as
well as to balance prospective benefits and burdens. This trial period can reduce uncertainty about outcomes.
Patients and surrogates often feel less stress and more in control if they can reverse or otherwise change a
decision to treat after the treatment has started. Accordingly, responsible health care may involve a trial with
periodic reevaluation. Caregivers then have time to judge the effectiveness of the treatment, and the patient or
surrogate has time to evaluate its benefits and burdens. Not to propose or allow the trial is morally worse than
not trying, and withholding may be worse than withdrawing in these cases.
To a great extent, the withholding-withdrawing distinction has shaped an intense debate about cardiovascular
implantable electronic devices (CIEDs), which include pacemakers and implantable cardioverter-defibrillators
(ICDs). These devices are increasingly common and often helpful and necessary. While clinicians have generally
been comfortable in not implanting these devices when patients or their surrogates do not want them, they have
often been uncomfortable discontinuing them, particularly pacemakers, even though each one can be stopped
noninvasively, without surgery. Horror stories abound. In one case, a woman described the struggle to have her
elderly, severely demented, significantly incapacitated father’s battery-powered pacemaker turned off. The
pacemaker had been inserted because, without it, a cardiologist would not clear her father for surgery to correct a
painful intestinal hernia. The family later realized that a temporary version would have sufficed. When her
father’s health problems worsened, and her mother requested deactivation of the pacemaker, the physician
refused because “it would have been like putting a pillow over [his] head.”23
Many physicians, over 60% in one study,24 see an ethical distinction between deactivating a pacemaker and
deactivating an ICD. For some, deactivation of pacemakers is tantamount to active euthanasia. This morally
dubious judgment is rooted in the fact that pacemakers provide continuous rather than intermittent treatment and
their removal may lead to immediate death, thereby increasing the professional’s sense of causal and moral
responsibility.25 A consensus statement in 2010, involving several professional groups, rightly dismissed any
ethical and legal distinctions among CIEDs, viewing all of them as life-sustaining treatments that patients and
their surrogates may legitimately request to be withdrawn in order to allow the underlying disease to take its
course.26 The consensus statement recognized clinicians’ rights not to participate in the withdrawal while, at the
same time, emphasizing their responsibility to refer patients to clinicians or others who would deactivate the
devices. As it happens, industry representatives deactivate the pacemaker about half the time and the ICD about
60% of the time.27
We conclude that the distinction between withholding and withdrawing is morally untenable and can be morally
dangerous. If a clinician makes decisions about treatment using this irrelevant distinction, or allows a surrogate
(without efforts at dissuasion) to make such a decision, the clinician is morally blameworthy for negative
outcomes. The felt importance of the distinction between not starting and stopping procedures undoubtedly
accounts for, but does not justify, the speed and ease with which hospitals and health care professionals decades
ago accepted no code or DNR orders and formed hospital policies regarding cardiopulmonary resuscitation
(CPR). Policies regarding CPR often stand independent of other policies governing life-sustaining technologies,
such as respirators, in part because many health care professionals view not providing CPR as withholding rather
than withdrawing treatment. Clinicians’ decisions to withhold CPR, through “do-not-attempt resuscitation”
(DNAR) or “do-not-resuscitate” (DNR) orders, are ethically problematic when made unilaterally without
advance consultation with patients and/or their families or, generally but not always, against their requests.28
(See further our discussion of futile interventions below and in Chapter 6.)
Medical Treatments and Artificial Nutrition and Hydration
Widespread debate has occurred about whether the distinction between medical technologies and artificial
nutrition and hydration (AN&H), which might be called sustenance technologies, can be used to differentiate
between justified and unjustified forgoing of life-sustaining treatments. Some argue that technologies for
supplying nutrition and hydration using needles, tubes, catheters, and the like should be sharply distinguished
from medical life-sustaining technologies, such as respirators and dialysis machines. Others dispute this
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distinction, contending that the technologies for AN&H are relevantly similar to other medical technologies29
and therefore should be subject to the same framework of ethical analysis and assessment.30
To help determine whether this distinction is defensible and useful, we examine some cases, beginning with the
case of a seventy-nine-year-old widow who had resided in a nursing home for several years, frequently visited
by her daughter and grandchildren, who loved her deeply. In the past she experienced repeated transient
ischemic attacks caused by reductions or stoppages of blood flow to the brain. Because of progressive organic
brain syndrome, she had lost most of her mental abilities and had become disoriented. She also had
thrombophlebitis (inflammation of a vein associated with clotting) and congestive heart failure. One day she
suffered a massive stroke. She made no recovery, remained nonverbal, manifested a withdrawal reaction to
painful stimuli, and exhibited a limited range of purposeful behaviors. She strongly resisted a nasogastric tube
being placed into her stomach to introduce nutritional formulas and water. At each attempt she thrashed about
violently and pushed the tube away. When the tube was finally placed, she managed to remove it. After several
days the staff could not find new sites for inserting IV lines, and debated whether to take further measures to
maintain fluid and nutritional intake for this elderly patient, who did not improve and was largely unaware and
unresponsive. After lengthy discussions with nurses on the floor and with the patient’s family, the physicians in
charge concluded that they should not provide further IVs, cutdowns, or a feeding tube. The patient had minimal
oral intake and died quietly the following week.31
Second, in a groundbreaking case in 1976, the New Jersey Supreme Court ruled it permissible for a guardian to
disconnect Karen Ann Quinlan’s respirator and allow her to die.32 After the respirator was removed, Quinlan
lived for almost ten years, protected by antibiotics and sustained by nutrition and hydration provided through a
nasogastric tube. Unable to communicate, she lay comatose in a fetal position, with increasing respiratory
problems, bedsores, and weight loss from 115 to 70 pounds. A moral issue developed over those ten years. If it
is permissible to remove the respirator, is it permissible to remove the feeding tube? Several Roman Catholic
moral theologians advised the parents that they were not morally required to continue medically administered
nutrition and hydration or antibiotics to fight infections. Nevertheless, the Quinlans continued AN&H because
they believed that the feeding tube did not cause pain, whereas the respirator did.33
US courts have since generally placed AN&H under the same substantive and procedural standards as other
medical treatments such as the respirator.34 In the much-discussed Terri Schiavo case, the husband and parents
of a woman who was in a persistent vegetative state (PVS) were in conflict over whether it was justifiable to
withdraw her feeding tube. Despite legal challenges and political conflicts, the court applying Florida’s laws
allowed the husband, expressing what he represented as Terri Schiavo’s wishes, to withdraw AN&H to allow her
to die, approximately fifteen years after she entered the PVS.35
It is understandable that some familial and professional caregivers find cultural, religious, symbolic, or
emotional barriers to withholding or withdrawing AN&H from patients.36 They sometimes describe withholding
or withdrawing AN&H as “starving” or letting a patient “starve” to death.37 And some state laws and public and
institutional policies also express this sentiment, particularly for patients in PVS. However, in our judgment,
caregivers may justifiably forgo AN&H for patients in some circumstances, as holds true for other life-
sustaining technologies. No morally relevant difference exists between the various life-sustaining technologies,
and the right to refuse medical treatment for oneself or others is not contingent on the type of treatment. There is
no reason to believe that AN&H is always an essential part of palliative care or that it necessarily constitutes a
beneficial medical treatment in all cases. Available evidence indicates that many terminally ill patients, including
those with advanced dementia, die more comfortably without AN&H, which, of course, should always be
provided when needed for comfort.38
Intended Effects and Merely Foreseen Effects: The Rule of Double Effect
Another venerable attempt to specify the principle of nonmaleficence appears in the rule of double effect (RDE),
also called the principle or doctrine of double effect. This rule incorporates an influential distinction between
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intended effects and merely foreseen effects.
Functions and conditions of the RDE. The RDE is invoked to justify claims that a single act, which has one or
more good effects and one or more harmful effects (such as death), is not always morally prohibited.39 As an
example of the use of the RDE, consider a patient experiencing terrible pain and suffering who asks a physician
for help in ending his life. Suppose the physician injects the patient with a chemical to intentionally cause the
patient’s death as a means to end the patient’s pain and suffering. The physician’s action is wrong, under the
RDE, because it involves the intention and direct means to cause the patient’s death. In contrast, suppose the
physician could provide medication to relieve the patient’s pain and suffering at a substantial risk that the patient
would die as a result of the medication. If the physician refuses to administer the medication, the patient will
endure continuing pain and suffering; if the physician provides the medication, it may hasten the patient’s death.
If the physician intended, through the provision of medication, to relieve grave pain and suffering and did not
intend to cause death, then the act of indirectly hastening death is not wrong, according to the mainline
interpretation of the RDE.
Classical formulations of the RDE identify four conditions or elements that must be satisfied for an act with a
double effect to be justified. Each is a necessary condition, and together they form sufficient conditions of
morally permissible action:40
1. 1. The nature of the act. The act must be good, or at least morally neutral, independent of its
consequences.
2. 2. The agent’s intention. The agent intends only the good effect, not the bad effect. The bad effect can be
foreseen, tolerated, and permitted, but it must not be intended.
3. 3. The distinction between means and effects. The bad effect must not be a means to the good effect. If the
good effect were the causal result of the bad effect, the agent would intend the bad effect in his or her
pursuit of the good effect.
4. 4. Proportionality between the good effect and the bad effect. The good effect must outweigh the bad
effect. That is, the bad effect is permissible only if a proportionate reason compensates for permitting the
foreseen bad effect.
All four conditions are controversial. We begin to investigate the cogency of the RDE by considering four cases
of what many call therapeutic abortion (limited to protecting maternal life in these examples): (1) A pregnant
woman has cervical cancer; she needs a hysterectomy to save her life, but this procedure will result in the death
of the fetus. (2) A pregnant woman has an ectopic pregnancy—the nonviable fetus is in the fallopian tube—and
physicians must remove the tube to prevent hemorrhage, which will result in the death of the fetus. (3) A
pregnant woman has a serious heart disease that probably will result in her death if she attempts to carry the
pregnancy to term. (4) A pregnant woman in difficult labor will die unless the physician performs a craniotomy
(crushing the head of the unborn fetus). Some interpretations of Roman Catholic teachings, where the RDE has
been prominent, hold that the actions that produce fetal death in the first two cases sometimes satisfy the four
conditions of the RDE and therefore can be morally acceptable, whereas the actions that produce fetal death in
the latter two cases never meet the conditions of the RDE and therefore are always morally unacceptable.41
In the first two cases, according to proponents of the RDE, a physician undertakes a legitimate medical
procedure aimed at saving the pregnant woman’s life with the foreseen but unintended result of fetal death.
When viewed as unintended side effects (rather than as ends or means), these fetal deaths are said to be justified
by the proportionately grave reason of saving the pregnant woman’s life. In both of the latter two cases, the
action of terminating fetal life is a means to save the pregnant woman’s life. As such, it requires intending the
fetus’s death even if the death is not desired. Therefore, in those cases, criteria 2 and 3 are violated and the act
cannot be justified by proportionality (criterion 4).
However, it is not likely that a morally relevant difference can be established between cases such as a
hysterectomy or a craniotomy in terms of the abstract conditions that comprise the RDE. In neither case does the
agent want or desire the death of the fetus, and the descriptions of the acts in these cases do not indicate morally
relevant differences between intending, on the one hand, and foreseeing but not intending, on the other. It is
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unclear why advocates of RDE conceptualize craniotomy as killing the fetus rather than as the act of crushing
the skull of the fetus with the unintended result that the fetus dies. Similarly, it remains unclear why in the
hysterectomy case the death of the fetus is foreseen but not intended. Proponents of the RDE must have a
practicable way to distinguish the intended from the merely foreseen, but they face major difficulties in
providing a theory of intention precise enough to draw defensible moral lines between the hysterectomy and
craniotomy cases.
A problematic conception of intention. Adherents of the RDE need an account of intentional actions and
intended effects of action to distinguish them from nonintentional actions and unintended effects. The literature
on intentional action is itself controversial and focuses on diverse conditions such as volition, deliberation,
willing, reasoning, and planning. One of the few widely shared views in this literature is that intentional actions
require that an agent have a plan—a blueprint, map, or representation of the means and ends proposed for the
execution of an action.42 For an action to be intentional, it must correspond to the agent’s plan for its
performance.
Alvin Goldman uses the following example in an attempt to prove that agents do not intend merely foreseen
effects.43 Imagine that Mr. G takes a driver’s test to prove competence. He comes to an intersection that requires
a right turn and extends his arm to signal for a turn, although he knows it is raining and that he will get his hand
wet. According to Goldman, Mr. G’s signaling for a turn is an intentional act. By contrast, his getting a wet hand
is an unintended effect or “incidental by-product” of his hand-signaling. A defender of the RDE must elect a
similarly narrow conception of what is intended to avoid the conclusion that an agent intentionally brings about
all the consequences of an action that the agent foresees. The defender distinguishes between acts and effects,
and then between effects that are desired or wanted and effects that are foreseen but not desired or wanted. The
RDE views the latter effects as foreseen, but not intended.
It is better, we suggest, to discard the language of “wanting” and to say that foreseen, undesired effects are
“tolerated.”44 These effects are not so undesirable that the actor would avoid performing the act that results in
them; the actor includes them as a part of his or her plan of intentional action. To account for this point, we use a
model of intentionality based on what is willed rather than what is wanted. On this model, intentional actions
and intentional effects include any action and any effect specifically willed in accordance with a plan, including
tolerated as well as wanted effects.45 In this conception a physician can desire not to do what he intends to do, in
the same way that one can be willing to do something but, at the same time, reluctant to do it or even detest
doing it.
Under this conception of intentional acts and intended effects, the distinction between what agents intend and
what they merely foresee in a planned action is not viable.46 For example, if a man enters a room and flips a
switch that he knows turns on both a light and a fan, but desires only to activate the light, he cannot say that he
activates the fan unintentionally. Even if the fan made an obnoxious whirring sound that he is aware of and
wants to avoid, it would be mistaken to say that he unintentionally brought about the obnoxious noise by
flipping the switch. More generally, a person who knowingly and voluntarily acts to bring about an effect brings
about that effect intentionally. The person intends the effect, but does not desire it, does not will it for its own
sake, and does not intend it as the goal of the action.
The moral relevance of the RDE and its distinctions can be evaluated in light of this model of intention. Is it
plausible to distinguish morally between intentionally causing the death of a fetus by craniotomy and
intentionally removing a cancerous uterus that causes the death of a fetus? In both actions the intention is to save
the woman’s life with knowledge that the fetus will die as a result of the action. No agent in either scenario
desires the negative result (the fetus’s death) for its own sake, and none would have tolerated the negative result
if its avoidance were morally preferable to the alternative outcome. All parties accept the bad effect only because
they cannot eliminate it without sacrificing the good effect.
In the standard interpretation of the RDE, the fetus’s death is a means to saving a woman’s life in the
unacceptable case but merely a side effect in the acceptable case. That is, an agent intends a means but does not
intend a side effect. This approach seems to allow persons to foresee almost anything as a side effect rather than
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as an intended means. It does not follow, however, that people can create or direct intentions as they please. For
example, in the craniotomy case, the surgeon might not intend the death of the fetus but only intend to remove it
from the birth canal. The fetus will die, but is this outcome more than an unwanted and, in double effect theory,
unintended consequence?47 We consider the outcome to be an unwanted but tolerated and intended
consequence.
The RDE might appear to fare better in handling problems in the care of dying patients where there is no conflict
between different parties. It is often invoked to justify a physician’s administration of medication to relieve pain
and suffering (the primary intention and effect) even when it will probably hasten the patient’s death (the
unintended, secondary effect). A related practice, terminal sedation, challenges the boundaries and use of the
RDE. In terminal sedation, physicians induce a deep sleep or unconsciousness to relieve pain and suffering in
the expectation that this state will continue until the patient dies. Some commentators contend that some cases of
terminal sedation can be justified under the RDE, whereas others argue that terminal sedation directly, although
slowly, kills the patient and thus is a form of euthanasia.48 Much depends on the description of terminal sedation
in a particular set of circumstances, including the patient’s overall condition, the proximity of death, and the
availability of alternative means to relieve pain and suffering, as well as the intention of the physician and other
parties. Interpretations of the RDE to cover some cases of terminal sedation allow compassionate acts of
relieving pain, suffering, and discomfort that will foreseeably hasten death.
Often in dispute is whether death is good or bad for a particular person, and nothing in the RDE settles this
dispute. The RDE applies only in cases with both a bad and a good effect, but determining the goodness and
badness of different effects is a separate judgment. Accordingly, the goodness or badness of death for a
particular person, whether it occurs directly or indirectly, must be determined and defended on independent
grounds.49
Defenders of the RDE eventually may solve the puzzles and problems that critics like us have identified, but
they have not succeeded thus far. However, we suggest that one constructive effort to retain an emphasis on
intention without entirely abandoning the larger point of the RDE would focus on the way actions display a
person’s motives and character.50 In the case of performing a craniotomy to save a pregnant woman’s life, a
physician may not want or desire the death of the fetus and may regret performing a craniotomy just as much as
he or she would in the case of removing a cancerous uterus. Such facts about the physician’s motives and
character can make a decisive difference to a moral assessment of the action and the agent, but this moral
conclusion also can be reached independently of the RDE.
OPTIONAL TREATMENTS AND OBLIGATORY TREATMENTS
We have now rejected some common distinctions and rules about forgoing life-sustaining treatment and causing
death that are accepted in some traditions of medical ethics. To replace them we propose a basic distinction
between obligatory and optional treatments. Our replacement analysis relies heavily on quality-of-life
considerations that are clearly incompatible with some of the distinctions and rules we have already rejected.
The following categories are central to our arguments:
1. 1. Obligatory to Treat (Wrong Not to Treat)
2. 2. Obligatory Not to Treat (Wrong to Treat)
3. 3. Optional Whether to Treat (Neither Required nor Prohibited to Treat)
Under 3, the question is whether it is morally neutral and therefore optional to provide or not to provide a
treatment.
The principles of nonmaleficence and beneficence have often been specified to establish a presumption in favor
of providing life-sustaining treatments for sick and injured patients. However, this presumption has rarely been
thought to entail that it is always obligatory to provide the treatments. The use of life-sustaining treatments
sometimes violates patients’ interests. For example, pain can be so severe and physical restraints so burdensome
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that these factors outweigh anticipated benefits, such as brief prolongation of life. Providing the treatment may
even be inhumane or cruel. In the case of some severely incompetent and suffering patients, the burdens can so
outweigh the benefits that the treatment is wrong, not merely optional.
Conditions for Overriding the Prima Facie Obligation to Treat
Several conditions justify decisions by patients, surrogates, or health care professionals to withhold or withdraw
treatment. We examine these conditions (in addition to valid refusal of treatment) in this section.
Futile or pointless interventions. Physicians have no obligation to provide pointless, futile, or contraindicated
treatment. In an extreme example, if a patient has died but remains on a respirator, cessation of treatment cannot
harm him or her, and a physician has no obligation to continue to treat. However, some religious and personal
belief systems do not consider a patient dead according to the same criteria many health care institutions
recognize. For example, if there is heart and lung function, even when only maintained by technology, some
religious traditions hold that the person is not dead and that the treatment is not futile even if health care
professionals deem it futile, useless, or wasteful. This example is the tip of an iceberg of controversies about
futility.
Typically the term futile refers to a situation in which irreversibly dying patients have reached a point at which
further treatment provides no medical benefit or is hopeless, and therefore is optional from a medical and moral
point of view. Palliative interventions may and generally should be continued to relieve pain, suffering, and
discomfort. This model of futility covers only some treatments that have been deemed futile. Less typically in
the literature on futility all of the following have been labeled futile: (1) whatever will not produce a sought
physiological effect (e.g., antibiotics for a viral infection), (2) whatever proposed intervention is completely
speculative because it is an untried “treatment,” (3) whatever is highly unlikely to have a good effect, (4)
whatever probably will produce only a low-grade, insignificant outcome (i.e., the results are expected to be
exceedingly poor), (5) whatever is highly likely to be more burdensome than beneficial, and (6) whatever—after
balancing effectiveness, potential benefit, and potential risk or burden—warrants withdrawing or withholding
treatment.51 Accordingly, the term futility is used to cover various situations of improbable effects, improbable
success, and unacceptable benefit-burden ratios. In our view, the first three and even the fourth could plausibly
be labeled judgments of futility, while five and six are better understood as judgments of utility or
proportionality, because they involving balancing benefits, burdens, and risks to the patient.
The plethora of competing conceptions and uncertain meanings in discussions of futility suggests that we should,
wherever possible, avoid the term in favor of more precise language in deliberations and communications
between the health care team and patients and families. Judgments of futility presuppose an accepted goal in
relation to which an intervention is deemed to be useless. Because of a lack of consensus about “medical
futility,” the language of “inappropriate” or “potentially inappropriate” has gained traction and wider
acceptance.52 Recommendations by key organizations of critical care specialists in the United States and Europe
have played a significant role in these changes.53 An American statement proposes that the term “potentially
inappropriate” be used in place of “futile” when interventions have at a minimum some chance of accomplishing
the patient-sought goal “but clinicians believe that competing ethical considerations justify not providing them.”
This proposal does not altogether eliminate the term futile. Rather, its meaning and use are restricted narrowly to
“the rare situations” in which patients or surrogates “request interventions that simply cannot accomplish their
intended physiologic goal.” In these situations, clinicians should not provide the futile interventions as a matter
of good ethics and good clinical judgment.54 This use of the term futile is narrower than ours, but that fact is less
problematic than its invocation of the vague and unhelpful language of “inappropriate” to cover situations in
which interventions can achieve some patient-sought goals but are outweighed by competing ethical
considerations. Without greater clarity and precision, it is implausible to think that one can successfully describe,
in deliberations or communications within a medical team or with a patient or family, what makes a particular
intervention “inappropriate.”55 If the competing ethical considerations involve an unfavorable balance of
probable benefits and probable burdens and harms to the patient, then this judgment needs to be articulated and
defended with precision. It is not adequately captured by the nebulous language of “inappropriate” or
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“potentially inappropriate.” If one judges that these considerations involve competing claims of just and fair
access to resources, that judgment also needs to be articulated and defended.
Ideally, in reaching judgments of futility in our sense, health care providers will focus on objective medical
factors in their decisions involving the dead and the irreversibly dying. Realistically, however, this ideal is
difficult to satisfy. Disagreement often exists among health professionals, and conflicts may arise from a
family’s belief in a possible miracle, a religious tradition’s insistence on doing everything possible in such
circumstances, and the like. It is sometimes difficult to know whether a judgment of futility is based on a
probabilistic prediction of failure or on something closer to medical certainty. If an elderly patient has a 1%
chance of surviving an arduous and painful regimen, one physician may call the procedure futile while another
may view survival as unlikely, but a possibility meriting consideration. At stake is a value judgment about what
is worth the effort, as well as scientific knowledge and evidence. The term futility typically expresses a
combined value judgment (such as “the proposed intervention is useless relative to the goal that is sought”) and
scientific judgment (such as “available data show that …”).
A physician is not morally required to provide a genuinely futile or contraindicated intervention and in some
cases may be required not to provide the intervention. The physician may not even be required to mention an
intervention that would be genuinely futile. These circumstances often involve incompetent patients, especially
patients in a PVS, where physicians or hospital policies sometimes impose on patients or surrogates decisions to
forgo life support. Hospitals are increasingly adopting policies aimed at denying interventions that physicians
knowledgeably judge to be futile, especially after trying them for a reasonable period of time. However, the
possibility of judgmental error by physicians should lead to caution in formulating these policies. Unreasonable
demands by patients and families should not be given priority over reasonable policies and assessments in health
care institutions. Respect for the autonomy of patients or authorized surrogates is not a trump that allows
patients or families to determine, without medical assistance and agreement, that a treatment is or is not futile.
The right to refuse a proposed intervention does not translate into a right to request or demand a particular
intervention.
We conclude that a genuinely futile medical intervention—one that has no chance of being successful in light of
acceptable medical goals—is morally optional and in many cases ought not be introduced or continued.
However, undertaking a futile intervention, such as CPR, may be an act of compassion and care toward the grief-
stricken family of a critically ill patient, and could be justified, within limits, to achieve a goal such as allowing
time for additional family members to arrive to have a little time with the patient prior to death.56 Legitimate
disagreements about whether a medical intervention is futile in particular circumstances may be best resolved
through institutional procedures such as mediation, ethics consultations, or ethics committee review, or,
occasionally, judicial review.57
Burdens of treatment outweigh its benefits. Medical codes and institutional policies often mistakenly assume
that physicians may legitimately terminate life-sustaining treatments for persons not able to consent to or refuse
the treatments only if the patient is terminally ill. Even if the patient is not terminally ill, life-sustaining medical
treatment is not obligatory if its overall burdens outweigh its benefits to the patient. Medical treatment for those
not terminally ill is sometimes optional even if the treatment could prolong life indefinitely, the patient is
incompetent, and no advance directive exists. Moral considerations of nonmaleficence do not demand the
maintenance of biological life and do not require the initiation or continuation of treatment without regard to the
patient’s pain, suffering, and discomfort.
As an example, consider the case we mentioned earlier of seventy-eight-year-old Earle Spring who developed
numerous medical problems, including chronic organic brain syndrome and kidney failure. Hemodialysis
controlled the latter problem. Although several aspects of this case were never resolved—such as whether
Spring was aware of his surroundings and able to express his wishes—a plausible argument existed that the
family and health care professionals were not morally obligated to continue hemodialysis because of the balance
of benefits and burdens to a patient whose compromised mental condition and kidney function would gradually
worsen regardless of what was done. However, in this case, as in many others, a family conflict of interest
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complicated the situation: The financially strapped family had to pay the mounting health care costs while
attempting to make judgments in the patient’s best interests.
We return later in this chapter in the subsection “Surrogate Decision Making without Advance Directives” to
procedures designed to protect such incompetent patients in difficult situations.
Quality-of-Life Judgments
Controversies about quality-of-life judgments. Our arguments thus far give considerable weight to quality-of-
life judgments in determining whether treatments are optional or obligatory. We have relied on the premise that
when quality of life is sufficiently low and an intervention produces more harm than benefit for the patient,
caregivers may justifiably withhold or withdraw treatment. However, these judgments require defensible criteria
of benefits and burdens that avoid reducing quality-of-life judgments to arbitrary personal preferences or to the
patient’s social worth.
In a landmark legal and bioethics case involving quality-of-life judgments, sixty-eight-year-old Joseph
Saikewicz, who had an IQ of 10 and a mental age of approximately two years and eight months, suffered from
acute myeloblastic monocytic leukemia. Chemotherapy would have produced extensive suffering and possibly
serious side effects. Remission under chemotherapy occurs in only 30% to 50% of such cases and typically only
for two to thirteen months. Without chemotherapy, doctors expected Saikewicz to live for several weeks or
perhaps several months, during which he would not experience severe pain or suffering. In not ordering
treatment, a lower court considered “the quality of life available to him [Saikewicz] even if the treatment does
bring about remission.”
The Supreme Judicial Court of Massachusetts rejected the lower court’s judgment that the value of life could be
equated with one measure of the quality of life, namely, Saikewicz’s lower quality of life because of mental
retardation. Instead, the Supreme Judicial Court interpreted “the vague, and perhaps ill-chosen, term ‘quality of
life’ … as a reference to the continuing state of pain and disorientation precipitated by the chemotherapy
treatment.”58 It balanced prospective benefit against pain and suffering to reach the conclusion that the patient’s
interests supported a decision not to provide chemotherapy.
From a moral standpoint, we agree with the court’s conclusion in this legal opinion, but the concept of “quality
of life” needs further analysis. Some writers have argued that we should reject moral or otherwise evaluative
judgments about quality of life and rely exclusively on medical indications for treatment decisions. For example,
Paul Ramsey argues that for incompetent patients we need only determine which treatment is medically
indicated to know which treatment is obligatory and which is optional. For imminently dying patients,
responsibilities are not fixed by obligations to provide treatments that serve only to extend the dying process;
they are fixed by obligations to provide appropriate care in dying. Ramsey predicts that unless we use these
medical guidelines, we will gradually move toward a policy of active, involuntary euthanasia for unconscious or
incompetent, nondying patients, based on arbitrary and inappropriate quality-of-life judgments.59
However, putatively objective medical factors, such as criteria used to determine medical indications for
treatment, do not provide the objectivity that Ramsey seeks. These criteria undermine his fundamental
distinction between the medical and the moral (or evaluative). It is impossible to determine what will benefit a
patient without presupposing some quality-of-life standard and some conception of the life the patient will live
after a medical intervention. Accurate medical diagnosis and prognosis are indispensable. But a judgment about
whether to use life-prolonging measures rests unavoidably on the anticipated quality of life of the patient and
cannot be reduced to vague and contestable standards of what is medically indicated.60
Ramsey maintains that a quality-of-life approach improperly shifts the focus from whether treatments benefit
patients to whether patients’ lives are beneficial to them—a shift that opens the door to active, involuntary
euthanasia.61 The underlying issue is whether we can state criteria of quality of life with sufficient precision and
cogency to avoid such dangers. We think we often can, although the vagueness surrounding terms such as
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dignity and meaningful life is a cause for concern, and cases in which seriously ill or disabled newborn infants
have been “allowed to die” under questionable justifications also provide a reason for caution.
We should exclude several conditions of patients from consideration. For example, intellectual disability is
irrelevant in determining whether treatment is in the patient’s best interest. Furthermore, proxies should not
confuse quality of life for the patient with the value of the patient’s life for others. Instead, criteria focused on
the incompetent patient’s best interests should be decisive for a proxy, even if the patient’s interests conflict with
familial or societal interests in avoiding burdens or costs.
This position contrasts with that of the US President’s Commission for the Study of Ethical Problems in
Medicine and Biomedical and Behavioral Research, which recognized a broader conception of “best interests”
that includes the welfare of the family: “The impact of a decision on an incapacitated patient’s loved ones may
be taken into account in determining someone’s best interests, for most people do have an important interest in
the well-being of their families or close associates.”62 Patients often do have an interest in their family’s welfare,
but it is a long step from this premise to a conclusion about whose interests should be overriding unless a
competent patient explicitly so states. When the incompetent patient has never been competent or has never
expressed his or her wishes while competent, it is improper to impute altruism or any other motive to that patient
against his or her medical best interest.
Children with serious illnesses or disabilities. Endangered near-term fetuses and critically ill newborns or young
children often pose difficult questions about medical treatment, particularly because of prognostic uncertainties
concerning survival or quality of life. Prenatal obstetric management and neonatal intensive care can salvage the
lives of many anomalous fetuses, premature babies, and newborns with physical conditions that would have
been fatal a few decades ago. The reduction in infant mortality in the United States has been amazing, moving
from an infant mortality rate of 25 deaths per 1,000 live births in 1960 to 5.74 deaths per 1,000 in 2014.63
Celebrations of this success have been somewhat muted by serious concerns about the quality of life that some
survivors face. Because the resultant quality of life is sometimes remarkably low, questions arise in some cases
about whether aggressive obstetric management or intensive care will produce more harms and burdens than
benefits for young patients.
As we argued at the end of Chapter 4 (pp. 141–42), the most appropriate standard in treatment decisions for
never-competent patients, including critically ill newborns and young children, is that of best interests, as judged
by the best estimate of what reasonable persons would consider the highest net benefit, in view of the probable
benefits of different treatments balanced against their probable harms and burdens to the patients. Parents or
other surrogates for these never-competent patients can legitimately use predictions about survival and about
quality of life, evaluated according to the patients’ interests, to determine whether treatments are obligatory,
optional, or even, in extreme cases, wrong.
When a newborn or young child can be predicted to have such an extremely low quality of life following
intensive care that the treatment can justifiably be judged to produce more harm than benefit, parents and the
medical team are warranted in withholding or withdrawing treatment. Some conditions that arguably lead to a
sufficiently poor quality of life to meet this standard include severe brain damage caused by birth asphyxia; Tay-
Sachs disease, which involves increasing spasticity and dementia and usually results in death by age three or
four; Lesch-Nyhan disease, which involves uncontrollable spasms, mental disability, compulsive self-mutilation,
and early death; severe dystrophic epidermolysis bullosa, in which the child’s skin inexorably peels off, resulting
in excruciating pain and causing major infections that often kill the child in the first year of life, even with
medical treatments. In some of these cases, particularly the last, it may even be wrong to treat because the
anticipated short life with its abysmal quality could be reasonably assessed as caused by human intervention and
as “intolerable.”64 A decision not to treat is also justifiable in severe cases of neural tube defects in which
newborns lack all or most of the brain and will inevitably die. Premature babies at different gestational stages
raise similar issues. One book in neonatal ethics maps these different stages by combining the best-interest
standard with classificatory categories such as ours: obligatory to treat, optional, and obligatory not to treat.65
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The best-interest standard, as a specification of principles of nonmaleficence and beneficence, focuses
caregivers’ attention on the interests of the newborn or young child, against other interests, including familial or
societal interests. However, this approach does not preclude attention to these other interests in making ethical
judgments. In the end, ethical judgments must take into account and balance the full range of important ethical
considerations, including, for example, justice in the use of scarce resources as well as the overall best interests
of the patient. Nevertheless, the best-interest standard serves as a guidance standard for the decisions of parents,
who are the presumptive decision makers, and for the physicians and others who must provide information about
possible options and their probable outcomes and must counsel parents.
The best-interest standard does not presuppose that there is always a single best plan for the newborn or young
child. Where significant uncertainties are present about prognoses for survival or for quality of life—or where
legitimate and reasonable differences exist in the values used to determine, weigh, and balance the patient’s
different interests, particularly as related to quality of life—different parents faced with the same situation may
reasonably make different decisions. Parents usually have fairly wide latitude and discretion in making decisions
about their children, for instance, regarding how to educate them, whether to allow them to engage in risky
sports, and the like. The best-interest standard not only provides guidance in terms of the target (the child) and
substance of the decision (the child’s interests), but it also leaves room for parental discretion in many cases.
Some writers in bioethics argue that a “harm standard” is needed to supplant or supplement the best-interests
standard for decision making about treatment for incapable patients such as newborns or infants.66 In our
judgment, this debate is misplaced, because the best-interests standard essentially incorporates the harm
standard.67 If an intervention is deemed to be in the patient’s best interests, it is expected to provide a net
benefit, considering the patient’s interests in prolonged life, avoidance of pain and suffering, having a sufficient
quality of life, and the like. This judgment rests on a probabilistic prediction of outcomes along with an
evaluation of these outcomes through balancing or weighing different interests. If the intervention is not in the
patient’s best interests, providing it would often harm the patient and not merely fail to benefit him or her. An
intervention against or contrary to the patient’s overall interests sets back the patient’s interests and thereby is
harmful. When it is argued that avoidance of harm (including iatrogenic harm) is the most suitable guide to
decisions on behalf of near-term fetuses and infants in neonatal care,68 the assessment generally should be
understood as avoiding a net harm. Most interventions inflict some harms, burdens, and the like on the patient
but may still be in the patient’s overall best interest.
The harm standard, as a subset of the best-interests standard, mainly provides a threshold for state intervention
rather than a comprehensive guide for caregivers in their deliberations. This standard is and should be invoked
when parents refuse treatments that are deemed by caregivers to be in an infant’s best interests and caregivers
seek a court order to override the parents’ refusal. In these cases, the parental refusal to authorize a treatment in
the infant’s best interest is a setback to the patient’s overall interests and therefore a net harm. Similar
conclusions are in order for parental demands for treatments that are not in the patient’s best interests. The harm
standard does not supplant, replace, or supplement the best-interest standard. The best-interest standard, properly
understood, incorporates the harm standard. (Later in this chapter we consider when it is justifiable to seek to
disqualify parental or other surrogate decision makers.)
Debates about a newborn’s or infant’s best interest often surround parental refusals of treatments. The following
case illustrates some complexities, ambiguities, uncertainties, and difficulties in the use of the best-interest
standard.69 Prenatal diagnosis detected fetal tricuspid atresia (TA), which is characterized by the absence of a
tricuspid heart valve or the presence of an abnormal one; both conditions prevent blood flow from the right
atrium to the right ventricle. In this particular case, the diagnosis of TA was made too late in the pregnancy for
termination to be an option. The discussion centered on what to do after delivery. The cardiologist explained to
the couple the nature of this condition—which can be relieved, but not cured, through immediate and long-term
surgical and medical interventions—and the long-term prognosis. The cardiologist also discussed possible and
probable morbidities and impacts on quality of life. The pregnant woman and her husband indicated that they
wanted only end-of-life care after their baby’s birth. Their decision was based in part on what they had learned
from Internet searches, which showed that many parents refuse surgery for their infants under these
circumstances.
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A condition similar to TA is hypoplastic left heart syndrome (HLHS). In both situations the interventions are not
curative. At the institution where this case occurred (as is true at most institutions in the United States), parents
of newborns with HLHS may choose between surgery (the treatment also requires additional subsequent
surgeries) and end-of-life care (data indicate that within the United States, parents are divided on this choice).
Accordingly, the neonatologist argued that in order to treat equally situated patients equally, parents of infants
with TA should also be able to choose between surgery and palliative care. The ethics debate was complicated
because as many as 50% of infants with TA who do not receive early surgery live past the first year of life and
some may even survive for several years, with the prospect of a long dying process together with significant
distress and suffering. This risk of harm has led some to judge that it is justifiable to seek a court order for
treatment against the parental refusal in this case.70 An alternative approach allows the parents to refuse surgery,
with full counseling about the possible outcomes, to be followed by a reevaluation of what to do if the infant
survives for six months.71
Parental requests of treatments for infants also can be against their best interests, if the proposed treatments are
(a) futile (as discussed earlier) or (b) have a low probability of benefit and a high probability of harm, including
pain and suffering. The widely discussed case of Charlie Gard in the United Kingdom is an example of (a) and,
according to a court opinion, (b) as well. As an eleven-month-old child, Charlie Gard had a rare condition,
mitochondrial DNA depletion syndrome, which is uniformly fatal. He suffered epileptic seizures as well as
discomfort related to intensive care, including ventilation, tube feeding, suctioning, and the like, all managed
medically through treatments such as sedation and analgesia. It is unclear, and perhaps impossible to know,
whether he experienced pain or pleasure or meaningful social interactions. Charlie Gard’s parents wanted to try a
highly experimental procedure—one never tried on his particular variant of the condition—in the United States,
and they raised enough money to cover the costs. Nevertheless, the High Court in London ruled against them,
holding that it was in their son’s best interest for treatment to stop so he could die.72
In opposing this court decision, Julian Savulescu does not argue that this experimental treatment was in Charlie
Gard’s best interest, but only that it “is enough to say we don’t know whether life will turn out to be in his
interests and worth living.”73 Even though the odds of success were considered quite low, Savulescu does not
see any acceptable grounds for denying him this chance at a decent life. By contrast, Dominic Wilkinson argues
that the parents’ request for treatment should not be allowed if no appropriately trained health professionals
consider the experimental treatment worth pursuing. In this case, even the physician who was willing to provide
the experimental treatment in the United States considered a benefit “unlikely.”74 Savulescu and Wilkinson
agree, as do we, that there also might be grounds of distributive justice for denying this treatment option if
public resources were required.
The fact that the court misapplied or overapplied the best-interest standard in this case should not be taken as an
argument against the standard itself. Some critics construe this misapplication or overapplication as decisive
evidence of the high susceptibility of the best-interest standard to value judgments and subjectivity.75
Undeniably, this standard involves value judgments—notions of interests, best interests, harms, burdens, and the
like often do—and subjectivity should be controlled or contained by imposing a requirement of reasonableness
in those judgments. As vague and seemingly unwieldly as it sometimes appears, the best-interest standard
remains the best standard for focusing parental and clinical deliberations about decisions to treat or to withhold
or withdraw treatment from critically ill newborns and children. This standard also functions in some difficult
and unresolvable conflicts to justify seeking a court order to override parental decisions that are sufficiently
contrary to the newborn’s or child’s overall interests that they constitute a net harm.
Because the best-interest standard captures only one prima facie set of moral considerations connected to
nonmaleficence and beneficence, other considerations such as distributive justice also enter into deliberations
about the right course of action—a problem we consider in Chapter 7.
KILLING AND LETTING DIE
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The distinction between killing and letting die (or allowing to die) is the most difficult and the most important of
all of the distinctions that have been used to determine acceptable decisions about treatment and acceptable
forms of professional conduct with seriously ill or injured patients. This distinction has long been invoked in
public discourse, law, medicine, and moral philosophy to distinguish appropriate and inappropriate ways for
death to occur. Killing has been widely viewed as morally wrong and letting die as morally acceptable. A large
body of distinctions and rules about life-sustaining treatments derives from the killing-letting die distinction,
which in turn draws on the act-omission and active-passive distinctions.76 For instance, the killing-letting die
distinction has affected distinctions between suicide (including assisted suicide) and forgoing treatment and
between homicide and natural death.77
In considering whether this distinction is coherent, defensible, and useful for moral guidance, this section
addresses three types of questions. (1) Conceptual questions: What conceptually is the difference between
killing and letting die? (2) Moral questions: Is killing in itself morally wrong, whereas allowing to die is not in
itself morally wrong? (3) Combined conceptual and causal questions: Is forgoing life-sustaining treatment
sometimes a form of killing? If so, is it sometimes suicide and sometimes homicide?
Conceptual Questions about Killing and Letting Die
Can we define killing and letting die so that they are conceptually distinct and do not overlap? The following
two cases suggest that we cannot: (1) A newborn with Down syndrome needed an operation to correct a
tracheoesophageal fistula (a congenital deformity in which a connection exists between the trachea and the
esophagus that allows food and milk to get into the lungs). The parents and physicians judged that survival was
not in this infant’s best interests and decided to let the infant die rather than undergo the operation. However,
during a public outcry that erupted over this case, critics charged that the parents and physicians had killed the
child by negligently allowing the child to die. (2) Dr. Gregory Messenger, a dermatologist, was charged with
manslaughter after he unilaterally disconnected his fifteen-weeks premature (one-pound, 11-ounce) son’s life-
support system in a Lansing, Michigan, neonatal intensive care unit. Messenger thought he had merely acted
compassionately in letting his son die after a neonatologist failed to fulfill a promise not to resuscitate the
infant.78
Can we legitimately describe actions that involve intentionally not treating a patient as “allowing to die” or
“letting die,” rather than “killing”? Do at least some of these actions involve both killing and allowing to die? Is
“allowing to die” a euphemism in some cases for “acceptable killing” or “acceptable ending of life”? These
conceptual questions all have moral implications. Unfortunately, both ordinary discourse and legal concepts are
vague and equivocal. In ordinary language, killing is a causal action that brings about death, whereas letting die
is an intentional avoidance of causal intervention so that disease, system failure, or injury causes death. Killing
extends to animal and plant life. Neither in ordinary language nor in law does the word killing entail a wrongful
act or a crime, or even an intentional action. For example, we can say properly that in automobile accidents, one
driver killed another even when no awareness, intent, or negligence was present.
Hence, conventional definitions are unsatisfactory for drawing a sharp distinction between killing and letting
die. They allow many acts of letting die to count as killing, thereby defeating the point of the distinction. For
example, under these definitions, health professionals kill patients when they intentionally let them die in
circumstances in which they have a duty to keep the patients alive. It is unclear in literature on the subject how
to distinguish killing from letting die so as to avoid even simple cases that satisfy the conditions of both killing
and letting die. The meanings of “killing” and “letting die” are so vague and inherently contestable that attempts
to refine their meanings likely will produce controversy without closure. We use these terms because they are
prominent in mainstream literature, but we avoid a heavy reliance on them insofar as possible in the discussion
below.
Connecting Judgments of Right and Wrong to Killing and Letting Die
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“Letting die” is prima facie acceptable in medicine under one of two conditions: (1) a medical technology is
useless in the strict sense of medical futility, as discussed earlier in this chapter, or (2) patients or their authorized
surrogates have validly refused a medical technology. That is, letting a patient die is acceptable if and only if it
satisfies the condition of futility or the condition of a valid refusal of treatment. If neither of these two conditions
is satisfied, then letting a patient die constitutes killing (perhaps by negligence).
In medicine and health care, “killing” has traditionally been conceptually and morally linked to unacceptable
acts. The conditions of medical practice make this connection understandable, but killing’s absolute
unacceptability is not assumed outside of specific settings such as traditional medical circles. The term killing
does not necessarily entail a wrongful act or a crime, and the rule “Do not kill” is not an absolute rule. Standard
justifications of killing, such as killing in self-defense, killing to rescue a person endangered by other persons’
wrongful acts, and killing by misadventure (accidental, nonnegligent killing while engaged in a lawful act)
prevent us from prejudging an action as wrong merely because it is a killing. Correctly applying the label
“killing” or the label “letting die” to a set of events (outside of traditional assumptions in medicine) will
therefore fail to determine whether an action is acceptable or unacceptable. There are both acceptable and
unacceptable killings and both acceptable and unacceptable cases of allowing to die.79
It may be that killing is usually wrong and letting die only rarely wrong, but, if so, this conclusion is contingent
on the features of particular cases. The general wrongness of killing and the general rightness of letting die are
not surprising features of the moral world inasmuch as killings are rarely authorized by appropriate parties
(excepting contexts such as warfare and capital punishment) and cases of letting die generally are validly
authorized. Be that as it may, the frequency with which one kind of act is justified, in contrast to the other kind of
act, cannot determine whether either kind of act is legally or morally justified in particular cases. Forgoing
treatment to allow patients to die can be both as intentional and as immoral as actions that in some more direct
manner take their lives, and both can be forms of killing.
In short, the labels “killing” and “letting die,” even when correctly applied, do not determine that one form of
action is better or worse, or more or less justified, than the other. Some particular instance of killing, such as a
brutal murder, may be worse than some particular instance of allowing to die, such as forgoing treatment for a
PVS patient; but some particular instance of letting die, such as not resuscitating a patient whom physicians
could potentially save, also may be worse than some particular instance of killing, such as mercy killing at the
patient’s request. Nothing about either killing or allowing to die entails judgments about actual wrongness or
rightness. Rightness and wrongness depend on the merit of the justification underlying the action, not on
whether it is an instance of killing or of letting die. Neither killing nor letting die is per se wrongful, which
distinguishes them from murder, which is per se wrongful.
Accordingly, judging whether an act of either killing or letting die is justified or unjustified requires that we
know something else about the act besides these characteristics. We need to know about the circumstances, the
actor’s motive (e.g., whether it is benevolent or malicious), the patient’s preferences, and the act’s consequences.
These additional factors will allow us to place the act on a moral map and make an informed normative
judgment about whether it is justifiable.
Forgoing Life-Sustaining Treatment: Killing or Allowing to Die?
Many writers in medicine, law, and ethics have construed a physician’s intentional forgoing of a medical
technology as letting die if and only if an underlying disease or injury causes death. When physicians withhold
or withdraw medical technology, according to this interpretation, a natural death occurs, because natural
conditions do what they would have done if the physicians had never initiated the technology. By contrast,
killings occur when acts of persons rather than natural conditions cause death. From this perspective, one acts
nonmaleficently in allowing to die and maleficently in killing (whatever one’s motives may be).
Although this view is influential in law and medicine, it is flawed. To attain a satisfactory account, we must add
that the forgoing of the medical technology is validly authorized and for this reason justified. If the physician’s
forgoing of technology were unjustified and a person died from “natural” causes of injury or disease, the result
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would be unjustified killing, not justified allowing to die. The validity of the authorization—not some
independent assessment of the causation of death—determines the moral acceptability of the action. For
example, withdrawing treatment from a competent patient is not morally justifiable unless the patient has made
an informed decision authorizing this withdrawal. If a physician removes a respirator from a competent patient
who needs it and wants to continue its use, the action is wrong, even though the physician has only removed
artificial life support and let nature take its course. The lack of authorization by the patient is the relevant
consideration in assessing the act as unacceptable, not the distinction between letting die and killing.
Even from a legal perspective, we can provide a better causal account than “the preexisting disease caused the
death.” The better account is that legal liability should not be imposed on physicians and surrogates unless they
have an obligation to provide or continue the treatment. If no obligation to treat exists, then questions of
causation and liability do not arise. If the categories of obligatory and optional are primary, we have a reason for
avoiding discussions about killing and letting die altogether and for focusing instead on health care
professionals’ obligations and problems of moral and legal responsibility.
In conclusion, the distinction between killing and letting die suffers from vagueness and moral confusion.
Specifically, the language of killing and its use in much of the literature of biomedical ethics is sufficiently
confusing—causally, legally, and morally—that it provides little, if any, help in discussions of assistance in
dying. In the next section we further support this conclusion.
INTENTIONALLY ARRANGED DEATHS: WHEN, IF EVER, ARE THEY
JUSTIFIED?
We now address a set of moral questions about the causation of death that are largely free of the language of
“killing.” The general question is, “Under which conditions, if any, is it permissible for a patient and a health
professional to arrange for the health professional’s assistance in intentionally ending the patient’s life?”
Withholding or withdrawing treatment will hasten death only for individuals who could be or are being sustained
by a technology. Many other individuals, including some patients with cancer, face a protracted period of dying
when respirators and other life-preserving technology are not being utilized. Great improvements in and
extensions of palliative care can adequately address the needs of many, perhaps most, of these patients.80
However, for many others, palliative care and the refusal of particular treatments do not adequately address their
concerns. During their prolonged period of dying, they may endure a loss of functional capacity, unremitting
pain and suffering, an inability to experience the simplest of pleasures, and long hours aware of the hopelessness
of their condition. Some patients find this prospect, or its actuality, unbearable and desire a painless means to
hasten their deaths.
In addition to withholding or withdrawing treatments or technologies, and prescribing medications that may
relieve pain and suffering while indirectly hastening death (see our discussion at pp. 167 and 170 of the rule of
double effect), physicians sometimes use what is viewed as a more active means to bring about a patient’s death.
Some argue that the use of an active means in medicine to bring about death always constitutes an inappropriate
killing, but there are problems in the idea that we can determine appropriate and inappropriate conduct by
considering whether an active means was involved.
An example is the Oregon Death with Dignity Act (ODWDA),81 where the distinction between “letting die” and
“killing” is not used and, in any event, would not be helpful in addressing particular cases under this act.
Physicians who act under the terms of ODWDA do not “kill” when acting as permitted under the law; rather,
they write prescriptions for a lethal medication at a patient’s request. The patient must make a conscious
decision whether to use the drug. As many as one-third of the patients who receive a written prescription never
ingest the lethal drug. For those who take the drug, the physician’s writing of the prescription is a necessary step
in the process that leads to some patients’ deaths, but it is not the determinative or even the final step, and so is
not the cause of a patient’s death. Under any reasonable interpretation of the term, the Oregon physician does not
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“kill” the patient, nor does a physician “let the patient die.” Here the terms letting die and killing do not
illuminate or help evaluate what happens when a physician helps a person escape the ravages of a fatal illness.
Some literature in bioethics treats issues about active physician assistance under the umbrella of the legal
protection of a “right to die.”82 Underlying the legal issues is a powerful struggle in law, medicine, and ethics
over the nature, scope, and foundations of the right to choose the manner of one’s death. Below we discuss
legalization, public policy, and institutional policy, but we are primarily interested in whether acts of assistance
by health professionals are morally justified. We begin with an important distinction between acts and policies.
From there we work back to some foundational moral issues.
Acts, Practices, and Slippery Slopes
Justifying an act is distinct from justifying a practice or a policy that permits or even legitimates the act’s
performance. A rule of practice or a public policy or a law that prohibits various forms of assistance in dying in
medicine may be justified even if it excludes some acts of causing a person’s death that in themselves, as acts,
are morally justified. For example, sufficient reasons may justify a law in a particular jurisdiction that prohibits
physicians from prescribing a lethal drug. However, in a particular case in that jurisdiction, it could be ethically
justifiable to provide the drug to a patient who suffers from terrible pain, who will probably die within a few
weeks, and who requests a merciful assisted death. In short, a valid and ethically justified law might forbid an
action that is morally justified in some individual cases.
A much-discussed problem is that a practice or policy that allows physicians to intervene to cause deaths or to
prescribe lethal drugs runs risks of abuse and might cause more harm than benefit. The argument is not that
serious abuses will occur immediately, but that they will grow incrementally over time. Society could start by
severely restricting the number of patients who qualify for assistance in dying, but later loosen these restrictions
so that cases of unjustified killing begin to occur. Unscrupulous persons would learn how to abuse the system,
just as they do now with methods of tax evasion on the margins of the system of legitimate tax avoidance. In
short, the argument is that the slope of the trail toward the unjustified taking of life could be so slippery and
precipitous that we ought never to embark on it.
Many dismiss such slippery-slope, or wedge, arguments because of a lack of empirical evidence to support the
claims involved, as well as because of their heavily metaphorical character (“the thin edge of the wedge,” “the
first step on the slippery slope,” “the foot in the door,” and “the camel’s nose under the tent”). However, some
slippery-slope arguments should be taken seriously in certain contexts.83 They force us to think about whether
unacceptable harms or wrongs may result from attractive, and apparently innocent, first steps. If society removes
certain restraints against interventions that cause death, various psychological and social forces could make it
more difficult to maintain the relevant distinctions in practice.
Opponents of the legalization of physician-assisted dying have often maintained that the practice inevitably
would be expanded to include euthanasia, that the quality of palliative care for all patients would deteriorate, that
patients would be manipulated or coerced into requesting assistance in hastening death, that patients with
impaired judgment would be allowed to request such assistance, and that members of possibly vulnerable groups
(people with disabilities, the economically disadvantaged, the elderly, immigrants, members of racial and ethnic
minorities, etc.) would be adversely affected in disproportionate numbers. These slippery-slope claims are
credible in light of the effects of social discrimination based on disability, cost-cutting measures in the funding
of health care, and the growing number of elderly persons with medical problems that require larger and larger
proportions of a family’s or the public’s financial resources. If rules allowing physician-assisted dying became
public policy, the risk would increase that persons in these populations will be neglected or otherwise abused.
For example, the risk would increase that some families and health professionals would abandon treatments for
disabled newborns and adults with severe brain damage to avoid social and familial burdens. If decision makers
reach judgments that some newborns and adults have overly burdensome conditions or lives with no value, the
same logic can be extended to populations of feeble, debilitated, and seriously ill patients who are financial and
emotional burdens on families and society.
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These fears are understandable. Rules in a moral code against passively or actively causing the death of another
person are not isolated fragments. They are threads in a fabric of rules that uphold respect for human life. The
more threads we remove, the weaker the fabric might become. If we focus on the modification of attitudes and
beliefs, not merely on rules, shifts in public policy may also erode the general attitude of respect for life.
Prohibitions are often both instrumentally and symbolically important, and their removal could weaken critical
attitudes, practices, and restraints.
Rules against bringing about another’s death also provide a basis of trust between patients and health care
professionals. We expect health care professionals to protect and promote our welfare under all circumstances.
We may risk a loss of public trust if physicians become agents of intentionally causing death in addition to being
healers and caregivers. On the other side, however, we may also risk a loss of trust if patients and families
believe that physicians abandon them in their suffering because the physicians lack the courage to offer the
assistance needed in the darkest hours of their lives.84
Slippery-slope arguments ultimately depend on speculative predictions of a progressive erosion of moral
restraints. If dire consequences will probably flow from the legalization of physician-assisted dying in a
jurisdiction, then these arguments are cogent and it is justifiable to prohibit such practices in that jurisdiction.
But how good is the evidence that dire consequences will occur? Does the evidence indicate that we cannot
maintain firm distinctions in public policies between, for example, patient-requested death and involuntary
euthanasia?85
Scant evidence supports the many answers that have been given to these questions. Those of us, including the
authors of this book, who take seriously the cautions presented in some versions of the slippery-slope argument
should admit that it requires a premise on the order of a precautionary principle, such as “better safe than sorry.”
(See our discussion of a precautionary approach and process in Chapter 6.) The likelihood of the projected moral
erosion is not something we presently can assess by appeal to good evidence. Arguments on every side are
speculative and analogical, and different assessors of the same evidence reach different conclusions. Intractable
controversy likely will persist over what counts as good and sufficient evidence. How Oregon’s procedural
safeguards work, or fail to work, will continue to be carefully watched. That state’s experience has influenced
subsequent steps taken in other states and countries. Failure of the ODWDA would be a major setback for
proponents of the right to die by use of prescribed drugs.
However, two decades after the enactment of the Oregon law, none of the abuses some had predicted
materialized in Oregon.86 The Oregon statute’s restrictions have been neither loosened nor broadened. There is
no evidence that any patient has died other than in accordance with his or her own wishes. While the number of
patients receiving prescriptions under the statute has increased significantly (from 24 in 1998 to 88 in 2008 to
218 in 2017), the law has not been used primarily by individuals who might be thought vulnerable to
intimidation or abuse. Those choosing assisted death have had, on average, a higher level of education and better
medical coverage than terminally ill Oregonians who did not seek assistance in dying. Women, people with
disabilities, and members of disadvantaged racial minorities have not sought assistance in dying in
disproportionate numbers. The overwhelming number of persons requesting assistance in dying are Caucasian,
and the gender of the requesters reflects the general population. Meanwhile, reports indicate that the quality of
palliative care has improved in Oregon. In 2017 approximately 20% of the 218 patients receiving a prescription
for a lethal medication decided not to use the prescribed drug (at least during 2017); data were not confirmed
about use or nonuse for an additional 20% (at the time of the annual report).87
Oregon’s experiment in physician-assisted death is instructive and reassuring in many respects, but questions
inevitably arise about its generalizability as a model for the whole of the United States and for other countries,
just as they arise about experiments with assisted dying in countries such as the Netherlands, Belgium, Canada,
and Switzerland.88
Valid Requests for Aid-in-Dying
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We now go to the central question of whether some acts of assisting another in dying are morally justified and
others unjustified. The frontier of expanded rights to control one’s death shifted, roughly at the point of the
transition from the twentieth to the twenty-first century, from refusal of treatment to requests for aid-in-dying.89
Assuming that the principles of respect for autonomy and nonmaleficence justify forgoing treatment, the same
justification, coupled with the principle of beneficence, might be extended to physicians prescribing barbiturates
or providing other forms of help requested by seriously ill patients. This strategy relies on the premise that
professional ethics and legal rules should avoid the apparent inconsistency between (1) the strong rights of
autonomous choice that allow persons in grim circumstances to refuse treatment in order to bring about their
deaths and (2) the denial of a similar autonomy right for persons under equally grim circumstances to arrange for
death by mutual agreement with a physician. The argument for reform is compelling when a condition
overwhelmingly burdens a patient, pain management fails to adequately comfort the patient, and only a
physician can and is willing to bring relief. At present, medicine and law in most jurisdictions in the United
States are in the awkward position of having to say to such patients, “If you were on life-sustaining treatment,
you would have a right to withdraw the treatment and then we could let you die. But since you are not, we can
only allow you to refuse nutrition and hydration or give you palliative care until you die a natural death,
however painful, undignified, and costly.”90
The two types of autonomous action—refusal of treatment and request for aid-in-dying—are not perfectly
analogous. A health professional is firmly obligated to honor an autonomous refusal of a life-prolonging
technology, but he or she is not obligated under ordinary circumstances to honor an autonomous request for aid-
in-dying. The key issue is not whether physicians are morally obligated to lend assistance in dying, but whether
valid requests render it morally permissible for a physician (or possibly some person other than a physician) to
lend aid-in-dying. Refusals in medical settings generally have a moral force not found in requests, but requests
do not lack all power to confer on another person a right to perform the requested act.
A physician’s precise responsibilities to a patient may depend on the nature of the request made as well as on the
preestablished patient-physician relationship. In some cases of physician compliance with requests, the patient
and the physician pursue the patient’s best interest under an agreement that the physician will not abandon the
patient and will undertake to serve what they jointly determine to be the patient’s best interests. In some cases,
patients in a close relationship with a physician both refuse a medical technology and request a hastened death to
lessen pain or suffering. Refusal and request may be two parts of a single inclusive plan. If the physician accepts
the plan, some form of assistance grows out of the preestablished relationship. From this perspective, a valid
request for aid-in-dying frees a responder of moral culpability for the death, just as a valid refusal precludes
culpability.
These arguments suggest that causing a person’s death is morally wrong, when it is wrong, because an
unauthorized intervention thwarts or sets back a person’s interests. It is an unjustified act when it deprives the
person who dies of opportunities and goods.91 However, if a person freely authorizes his or her death by making
an autonomous judgment that ending life because of a need to diminish pain and suffering, an inability to engage
in activities making life enjoyable, a reduced autonomy or dignity, a loss of control of bodily functions, or being
a burden on one’s family constitutes a personal benefit rather than a setback to interests, then active aid-in-dying
at the person’s request involves neither harming nor wronging.92 Aiding an autonomous person at his or her
request for assistance in dying is, from this perspective, a way of showing respect for the person’s autonomous
choices. Similarly, denying the person access to individuals who are willing and qualified to comply with the
request can show a fundamental disrespect for the person’s autonomous choice.
Unjustified Physician Assistance in Dying
The fact that the autonomous requests of patients for aid-in-dying should be respected in some circumstances
does not entail that all cases of physician-assisted death at the patient’s request are justifiable. Jack Kevorkian’s
widely reported practices provide an important historical example of the kind of unjustified physician assistance
that society should discourage and even prohibit. In his first case of assisting in suicide, Janet Adkins, an Oregon
grandmother with Alzheimer’s disease, had reached a decision that she wanted to take her life rather than lose
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her cognitive capacities, which she was convinced were slowly deteriorating. After Adkins read in news reports
that Kevorkian had invented a “death machine,” she communicated with him by phone and then flew from
Oregon to Michigan to meet with him. Following brief discussions, she and Kevorkian drove to a park in
northern Oakland County. He inserted a tube in her arm and started saline flow. His machine was constructed so
that Adkins could then press a button to inject other drugs, culminating in potassium chloride, which would
physically cause her death. She then pressed the button.93
This case raises several concerns. Janet Adkins was in the fairly early stages of Alzheimer’s and was not yet
debilitated. At fifty-four years of age, she was still capable of enjoying a full schedule of activities with her
husband and playing tennis with her son, and she might have been able to live a meaningful life for several more
years. A slight possibility existed that the Alzheimer’s diagnosis was incorrect, and she might have been more
psychologically depressed than Kevorkian appreciated. She had limited contact with him before they
collaborated in her death, and he did not administer examinations to confirm either her diagnosis or her level of
competence to commit suicide. Moreover, he lacked the professional expertise to evaluate her medically or
psychologically. The glare of media attention also raises the question whether Kevorkian acted imprudently to
generate publicity for his social goals and for his forthcoming book.
Lawyers, physicians, and writers in bioethics have almost universally condemned Kevorkian’s actions. The case
raises all the fears present in the arguments mentioned previously about physician-assisted dying: lack of social
control, inadequate medical knowledge, unconfirmed medical diagnoses and prognoses, no serious and qualified
assessment of the patient’s mental and emotional state, absence of accountability, and unverifiable circumstances
of a patient’s death. Although Kevorkian’s approach to assisted suicide was deplorable, some of his “patients”
raised distressing questions about the lack of a support system in health care for handling their problems. Having
thought for over a year about her future, Janet Adkins decided that the suffering of continued existence exceeded
its benefits. Her family supported her decision. She faced a bleak future from the perspective of a person who
had lived an unusually vigorous life, both physically and mentally. She believed that her brain would slowly
deteriorate, with progressive and devastating cognitive loss and confusion, fading memory, immense frustration,
and loss of all capacity to take care of herself. She also believed that the full burden of responsibility for her care
would fall on her family. From her perspective, Kevorkian’s offer was preferable to what other physicians had
offered, which was a flat refusal to help her die as she wished.
Justified Physician Assistance in Dying
Kevorkian’s strategy is an example of unjustified assisted suicide. By contrast, consider the actions of physician
Timothy Quill in prescribing the barbiturates desired by a forty-five-year-old patient who had refused a risky,
painful, and often unsuccessful treatment for leukemia. She had been his patient for many years and she and
members of her family had, as a group, come to this decision with his counsel. She was competent and had
already discussed and rejected all available alternatives for the relief of suffering. This case satisfied the general
conditions that are sufficient for justified physician assistance in ending life. These conditions, we propose,
include
1. 1. A voluntary request by a competent patient
2. 2. An ongoing patient-physician relationship
3. 3. Mutual and informed decision making by patient and physician
4. 4. A supportive yet critical and probing environment of decision making
5. 5. A patient’s considered rejection of alternatives
6. 6. Structured consultation with other parties in medicine
7. 7. A patient’s expression of a durable preference for death
8. 8. Unacceptable suffering by the patient
9. 9. Use of a means that is as painless and comfortable as possible
Quill’s actions satisfied all of these conditions, but critics found his involvement as a physician unsettling and
unjustified. Several critics invoked slippery-slope arguments, because acts like Quill’s, if legalized, could
potentially affect many patients, especially the elderly. Others were troubled by the fact that Quill apparently
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violated a New York state law against assisted suicide. Furthermore, to reduce the risks of criminal liability,
Quill apparently lied to the medical examiner by informing him that a hospice patient had died of acute
leukemia.94
Despite these problems, we do not criticize Quill’s basic intentions in responding to the patient, the patient’s
decision, or their relationship. Suffering and loss of cognitive capacity can ravage and dehumanize patients so
severely that death is in their best interests. In these tragic situations—or in anticipation of them, as in this case
—physicians such as Quill do not act wrongly in assisting competent patients, at their request, to bring about
their deaths. Public policy issues regarding how to avoid abuses and discourage and prevent unjustified acts
should be a central part of our discussion of forms of appropriate physician assistance, but these problems do not
finally determine the moral justifiability of the physician’s act of assisting in the patient’s death when caring for
the patient.
Such caring physician assistance in hastening death is best viewed as part of a continuum of medical care. A
physician who encounters a sick patient should initially seek, if possible, to rid the patient’s body of its ills.
Restoration of health is a morally mandatory goal if a reasonable prospect of success exists and the patient
supports the means necessary to this end. However, to confine the practice of medicine to measures designed to
cure diseases or heal injuries is an unduly narrow way of thinking about what the physician has to offer the
patient. When, in the patient’s assessment, the burdens of continued attempts to cure outweigh their probable
benefits, a physician should be able to redirect the course of treatment so that its primary focus is the relief of
pain and suffering. For many patients, palliative care with aggressive use of analgesics will prove sufficient to
accomplish this goal. For other patients, relief of intolerable suffering will come only with death, which some
will seek to hasten.
A favorable response by a physician to a request for assistance in facilitating death by hastening it through
prescribing lethal medication is not relevantly different from a favorable response to requests for assistance in
facilitating death by easing it through removal of life-prolonging technology or use of coma-inducing
medications. The two acts of physician assistance are morally equivalent as long as no other morally relevant
differences are present in the cases. That is, if in both cases the diseases are relevantly similar, the requests by
the patient are relevantly similar, and the desperateness of the patients’ circumstance is relevantly similar,
responding to a request to provide the means to hasten death is morally equivalent to responding to a request to
ease death by withdrawing treatment, sedating to coma, and the like.
With due caution, we should be able to devise social policies and laws that maintain a bright line between
justified and unjustified physician assistance in dying. Principles of respect for autonomy and beneficence and
virtues of care and compassion all offer strong reasons for recognizing the legitimacy of physician-assisted
death. Major opposition stems from interpretations of the principle of nonmaleficence and its specifications in
various distinctions and rules. We have argued that the most critical distinctions and rules often break down on
closer examination. In arguing for changes in laws and policies to allow physician-assisted dying in certain
contexts, we do not maintain that these changes will handle all important issues in the care of dying and
seriously ill patients. The changes we recommend mainly address last-resort situations, which can often be
avoided by better social policies and practices, including improved palliative care, which we also strongly
recommend.
In presenting a case involving the disconnection of a ventilator maintaining the life of a patient with
amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) at an international conference on “Ethical Issues in
Disability and Rehabilitation,” some clinicians framed it as an “end-of-life case,” in which the “patient” decided
to discontinue the ventilator. They were surprised when the audience, many of whom had disabilities and had
themselves experienced long-term ventilator use, disputed this classification and argued instead that this was a
“disability” case in which the clinicians should have provided better care, fuller information, and more options
to the “consumer,” particularly to help him overcome his felt isolation after the recent death of his spouse:
“What to the clinicians was a textbook case of ‘end-of-life’ decision making was, for their audience, a story in
which a life was ended as a result of failures of information and assistance by the presenters themselves.”95
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Few doubt that we need further improvements in supporting people who suffer from serious medical problems.
Control of pain and suffering is a moral imperative. However, significant progress in control of pain and
suffering will not obviate last-resort situations in which individuals reasonably seek to control their dying in
ways that have often been denied to patients.
PROTECTING INCOMPETENT PATIENTS FROM HARM
Laws that authorize physician-assistance in dying should apply only to competent persons who are able to make
autonomous choices. There is vigorous debate about whether comparable laws should be extended to previously
competent persons who have provided a clear and relevant advance directive. Apart from physician aid-in-dying,
we have noted other possible decisions that may apply to incompetent persons, including newborns and children.
In Chapter 4 (pp. 139–41), we examined standards of surrogate decision making for incompetent patients. We
now consider who should decide for the incompetent patient. Determining the best system for protecting patients
from harm is the central problem.96 In the absence of advance directives executed by previously competent
individuals, we think first of families as the proper decision makers because they usually have the deepest
interest in protecting their incompetent members. However, we also need a system that will shield incompetent
individuals from family members who care little or are caught in conflicts of interest, while at the same time
protecting residents of nursing homes, psychiatric hospitals, and facilities for the disabled and mentally
handicapped, many of whom rarely, if ever, see a family member. The appropriate roles of families, courts,
guardians, conservators, hospital committees, and health professionals all merit consideration.
Advance Directives
In an increasingly popular procedure rooted as much in respect for autonomy as in obligations of
nonmaleficence, a person, while competent, either writes a directive for health care professionals or selects a
surrogate to make decisions about life-sustaining treatments during periods of incompetence.97 Two types of
advance directive aim at governing future decisions: (1) living wills, which are substantive or instructional
directives regarding medical procedures in specific circumstances, and (2) durable power of attorney (DPA) for
health care, which is a legal document that allows persons to assign a specific agent (a proxy or surrogate) to
make their health care decisions when they have lost capacity. The power is “durable” because, unlike the usual
power of attorney, it continues in effect when the signer becomes incompetent.
However, these documents generate practical and moral problems.98 First, relatively few persons compose them,
and many who do fail to leave sufficiently explicit instructions. Second, a designated decision maker might be
unavailable when needed, might be incompetent to make good decisions for the patient, or might have a conflict
of interest such as a prospective inheritance or a better position in a family-owned business. Third, some patients
who change their preferences about treatment fail to change their directives, and a few legally incompetent
patients protest a surrogate’s decision. Fourth, laws in some legal jurisdictions severely restrict the use of
advance directives. For example, advance directives may have legal effect if and only if the patient is terminally
ill and death is imminent. However, difficult decisions often must be made when the patient is not imminently
dying or does not have a medical condition appropriately described as a terminal illness. Fifth, living wills
provide no basis for health professionals to overturn a patient’s instructions; yet prior decisions by the patient
could turn out not to be in the patient’s best medical interest. Patients while competent often could not have
reasonably anticipated the precise circumstances they actually encountered when they became incompetent.
Surrogate decision makers also sometimes make decisions with which physicians sharply disagree, in some
cases asking the physician to act against his or her conscience or against medical practice standards.
Despite these problems, the advance directive is a valid way for competent persons to exercise their autonomy,
and implementing the procedures for informed consent discussed in Chapter 4 can overcome many of the
practical problems. As in informed consent situations, we should distinguish the process from the product (here,
the advance directive). Efforts are under way to enhance the entire process of advance care planning, for
instance, through in-depth dialogue, improved communication, values histories, and the use of a variety of
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scenarios and decision aids.99 In contrast to earlier studies that found little if any impact of advance directives on
subsequent decisions and care,100 later research indicates that elderly patients who lose their capacity to make
decisions but who have advance directives tend to receive care that is strongly aligned with their previously
stated preferences. However, some studies indicate that advance directives have not significantly enhanced
physician-patient communication and decision making about subjects such as resuscitation.101
Surrogate Decision Making without Advance Directives
When an incompetent patient lacks an advance directive, who should make which decisions, and with whom
should the decision maker consult?
Qualifications of surrogate decision makers. We propose the following list of qualifications for decision makers
for incompetent patients (including newborns):
1. 1. Ability to make reasoned judgments (competence)
2. 2. Adequate knowledge and information
3. 3. Emotional stability
4. 4. A commitment to the incompetent patient’s interests, free of conflicts of interest and free of controlling
influence by those who might not act in the patient’s best interests
The first three conditions follow from our discussions of informed consent and competence in Chapter 4. The
only potentially controversial condition is the fourth. Here we endorse a criterion of partiality—acting as an
advocate in the incompetent patient’s best interests—rather than impartiality, which requires neutrality when
considering the interests of the various affected parties. Impartial consideration of the interests of all parties is
not appropriate to the role of being an advocate for the patient.
Four classes of decision makers have been proposed and used in cases of withholding and terminating treatment
for incompetent patients: families, physicians and other health care professionals, institutional committees, and
courts. If a court-appointed guardian exists, that person will act as the primary responsible party. The following
analysis is meant to provide a defensible structure of decision-making authority that places the caring family as
the presumptive authority when the patient cannot make the decision and has not previously designated a
decision maker.
The role of the family. Wide agreement exists that the patient’s closest family member is the first choice as a
surrogate. Many patients strongly prefer family members to interact with physicians as the decision-making
authorities about their medical fate.102 The family’s role should be presumptively primary because of its
presumed identification with the patient’s interests, depth of concern about the patient, and intimate knowledge
of his or her wishes, as well as its traditional position in society.
Unfortunately, the term family is imprecise, especially if it includes the extended family. The reasons that
support assigning presumptive priority to the patient’s closest family member(s) also support assigning relative
priority to other family members. However, even the patient’s closest family members sometimes make
unacceptable decisions, and the authority of the family is not final or ultimate.103 The closest family member
can have a conflict of interest, can be poorly informed, or can be too distant personally and even estranged from
the patient.104
Consider an illustrative case: Mr. Lazarus was a fifty-seven-year-old male patient brought into the hospital after
suffering a heart attack while playing touch football. He lapsed into a coma and became ventilator-dependent.
After twenty-four hours his wife requested that the ventilator be withdrawn and dialysis stopped to allow him to
die. The attending physician was uncomfortable with this request because he thought that Mr. Lazarus had a
good chance of full recovery. Mrs. Lazarus insisted that treatment be withdrawn, and she had a DPA for health
care that designated her the surrogate. She became angry when the health care team expressed its reluctance to
withdraw care, and she threatened to sue the hospital if her decision was not honored. An ethics consult was
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called because the attending and staff remained unwilling to carry out her wishes. The ethics consultant read the
DPA and discovered that Mr. Lazarus had designated his wife as surrogate only if he was deemed to be in a
PVS. Furthermore, Mr. Lazarus had stipulated on the DPA that if he was not in a PVS, he wanted “everything
done.” He awoke after three days and immediately revoked his DPA when told of his wife’s demand.105
Health care professionals should seek to disqualify any decision makers who are significantly incompetent or
ignorant, are acting in bad faith, or have a conflict of interest. Serious conflicts of interest in the family may be
more common than either physicians or the courts have generally appreciated.106 Health care professionals also
should be alert to and help address the burdens of decision making for familial and other surrogates. According
to one review of the relevant research, at least one-third of the surrogates involved in decision making about
treatment for incapacitated adults experienced emotional burdens, such as stress, guilt, and doubt about whether
they had made the best decisions in the circumstances. However, when surrogates were confident that the
treatment decision accorded with the patient’s own preferences, their emotional burden was reduced.107
The role of health care professionals. Physicians and other health care professionals can help family members
become more adequate decision makers and can safeguard the patient’s interests and preferences, where known,
by monitoring the quality of surrogate decision making. Physicians sometimes best serve both the family and the
patient by helping surrogates see that rapid functional decline has set in and the time has come to shift from life-
prolonging measures to palliative care centered on increasing comfort and reducing the burdens of
treatments.108 Such a reorientation can be wrenchingly difficult and emotionally challenging for physicians,
nurses, and family members.
In the comparatively rare situation in which physicians contest a surrogate’s decision and disagreements persist,
an independent source of review, such as a hospital ethics committee or the judicial system, is advisable. In the
event that a surrogate, a member of the health care team, or an independent reviewer asks a caregiver to perform
an act the caregiver regards as contraindicated, futile, or unconscionable, the caregiver is not obligated to
perform the act but may still be obligated to help the surrogate or patient make other arrangements for care.
Institutional ethics committees. Surrogate decision makers sometimes refuse treatments that would serve the
interests of those they should protect, and physicians sometimes too readily acquiesce in their preferences. In
other cases, surrogates need advice or help in reaching difficult decisions. The involved parties then may need a
mechanism or procedure to help make a decision or to break a private circle of refusal and acquiescence. A
similar need exists for assistance in decisions regarding residents of nursing homes and hospices, psychiatric
hospitals, and residential facilities in which families often play only a small role, if any.
Institutional ethics committees can help in these situations, though they differ widely in their composition,
function, and responsibilities. Many committees create or recommend explicit policies to govern actions such as
withholding and withdrawing treatment, and many serve educational functions in hospitals or other institutions.
Controversy centers on various additional functions, such as whether committees should make, facilitate, or
monitor decisions about patients in particular cases. The decisions of committees on occasion need to be
reviewed or criticized, perhaps by an auditor or impartial party.
Nonetheless, the benefits of good committee review generally outweigh its risks, and these committees have a
robust role to play in circumstances in which physicians acquiesce too readily to parental, familial, or guardian
choices that prove contrary to a patient’s best interests.
The judicial system. Courts are sometimes unduly intrusive as final decision makers, but in many cases they
represent the last and perhaps the fairest recourse. When good reasons exist to appoint guardians or to disqualify
familial decision makers or health care professionals to protect an incompetent patient’s interests, the courts may
legitimately be involved. The courts also sometimes need to intervene in nontreatment decisions for incompetent
patients in mental institutions, nursing homes, and the like. If no family members are available or willing to be
involved, and if the patient is confined to a state mental institution or a nursing home, it may be appropriate to
establish safeguards beyond the health care team and the institutional ethics committee.109
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WHOSE RISKS AND WHOSE BENEFITS? PROBLEMS OF
UNDERPROTECTION AND OVERPROTECTION IN RESEARCH
We have thus far concentrated on harm in clinical care. We now turn to ethical issues of harm in research.
Historical Problems of Underprotection
Historically, the risks of harm to human subjects in medical research have often been placed heavily on the
economically disadvantaged, the very sick, and the vulnerable, owing to their ready availability. The unjustified
overutilization of members of these populations has been a matter of deep moral concern in biomedical ethics.
Even though there is general agreement that we need a system of research ethics with sufficient internal controls
to protect subjects from exploitation, disagreement surrounds questions about the conditions under which
protections are needed and how best to ensure those protections. In the last three decades of the twentieth
century the predominant concern was that we were underprotecting human subjects, especially vulnerable
groups such as children, the mentally handicapped, and the institutionalized. The harms caused by the
underprotection of research subjects have been well documented and carefully examined in the biomedical
ethics literature, and they have often been addressed in public policy and regulation as well.110 However, the
harms caused by the overprotection of subjects have received far less attention, even though they can create
serious delays in the progress of research, thereby causing harm to those who do not receive the medical benefits
of the research in a timely fashion. We emphasize this problem in the following subsection.
Recent Problems of Overprotection
An eye-opening case of such problems starts with an allegation of inappropriate human-subjects research on
catheter-related bloodstream infections, which can cause thousands of deaths each year in intensive care units
(ICUs).111 Dr. Peter Pronovost, then at The Johns Hopkins University, was working with 103 ICUs in 67
Michigan hospitals to implement and evaluate what Johns Hopkins and other ICUs had established to be a
successful infection-control measure. The work was halted by federal regulators in the Office for Human
Research Protections (OHRP) after receiving a complaint that Pronovost and the hospitals were using patients in
human-subjects research without their informed consent.
Pronovost’s activities were part of a study to improve medical care sponsored by the Michigan Hospital
Association. The aim was to control infections in ICUs by strictly implementing preventive procedures that had
already been recommended by the Centers for Disease Control and Prevention, such as washing hands, using
infection control precautions, and the like. The team studied the effect on infection rates of a careful
implementation in practice of all the recommended procedures, following a checklist. They found that infection
rates fall substantially when the checklist is scrupulously followed.
A published report of the study led to a complaint to the OHRP that the research violated US federal regulations.
After investigating, the OHRP demanded that Johns Hopkins and the Michigan hospitals correct their “mistake”
and undertake a full ethics review of the study. The Johns Hopkins institutional review board (IRB) had already
examined the project and found that full IRB review and informed consent were not required in this case. This
IRB had a different understanding of federal regulations and research ethics than did the OHRP—a result most
likely explained by vague and unspecific regulatory requirements. One example is the lack of clarity
surrounding the concept of “research involving human subjects.” If an IRB has one interpretation and a
regulatory office another, both research and advances in practice can be held up and can even lead to disastrous
federal penalties if the wrong judgment is made.
In the Pronovost case, the activities involved no new interventions and posed no risk for patients. Research was
fully integrated with practice, and physicians were following the safest practices known to exist—without
introducing new research activities. OHRP officials made the judgment that because infection rates were being
studied in patients, the study called for full committee review and for the informed consent of subjects. But this
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research was by its design an attempt to improve medical care. The invocation of regulations intended to protect
research subjects led to a delay in the use of effective preventive measures in hospitals that may have caused
multiple patient deaths and could have eventuated in unjustified penalties to the medical research institutions and
hospitals involved.
Eventually the OHRP issued a statement that in effect admitted that it had been wrong. It acknowledged that the
work was “being used … solely for clinical purposes, not medical research or experimentation.” The OHRP
further acknowledged that the activity, from the start, “would likely have been eligible for both expedited IRB
review and a waiver of the informed consent requirement.”112 While laudable, this acknowledgment of error is
puzzling. Pronovost’s work was an empirical study and therefore research. Perhaps the OHRP means that the
study is research, though not “research involving human subjects.” This estimate is probably the correct
judgment, but it also indicates that the notion of research involving human subjects is systematically unclear,
which can lead to overprotection, as in this case, thus causing harm.
Government regulations usually need some form of interpretation, but we should not tolerate a system in which
lives might be lost because of an obsolete conception of human-subjects research that obstructs riskless studies
aimed at improving medical practice. When research investigations are unduly restricted through requirements
of regulation and review, the requirements should be adjusted. In the case of Pronovost’s research, the initial
IRB review was correct when it concluded that the study did not need full IRB review and patients’ informed
consent, but later the system of oversight worked more to present risks to current and future patients than to
protect them.
Problems of Group Harm in Research
In Chapter 4 (pp. 119–23), we presented a theory of valid informed consent. In addition to the paradigmatic case
of specific, explicit informed consent, we also examined the place of other varieties of consent, including
general, implicit, tacit, and presumed consent. We now turn to a version of “general consent,” often called
“broad consent,” “global consent,” or “blanket consent,” in the context of research using biological samples.
Under this form of consent, harms may occur for individuals and groups as a result of inadequate information
and understanding. The problems can be acute when biological samples are banked and subsequently used in
unanticipated ways that may harm individuals or groups. Valid informed consent is one protective measure, but
it is insufficient by itself. Improved forms of governance of banks of biological specimens are also needed.113
Research on stored biological specimens. Advances in science have introduced confusion about how we can
efficiently promote research while protecting the rights of donors of samples. Samples collected for future
research may not be adequately described in a protocol or consent form when the collection occurs. The wording
in the form may be dictated by shadowy anticipated future uses of samples, with little explanation of possible
harmful outcomes. The challenge is not to cause harm to personal and group interests and not to violate privacy
and confidentiality. The moral problem is whether it is possible to meet this challenge and, if so, how.114
Samples and data frequently descend from sources external to a research setting, including industry, government,
and university sources, and it may be difficult to determine both whether adequately informed consent was
obtained for use of the samples and data and whose interests might be at risk. Using samples or data to achieve
goals other than those initially disclosed to subjects negates even an originally valid consent process and
threatens the trust between subjects and investigators. Even anonymized samples can harm some personal and
group interests and may violate the investigator-subject relationship. Furthermore, secure anonymization is
notoriously difficult to achieve, as various breaches of privacy have shown.
We will not try to resolve all of these complicated issues. We will instead present a paradigm case that
exemplifies the pitfalls and risks of harm in research that permits broad consents.
Diabetes research on Havasupai Indians. This case involves research conducted at Arizona State University
using as research subjects the Havasupai Indians of the Grand Canyon. Investigators used a broad consent,
which was not as carefully scrutinized by university ethics committee review as it should have been. The story
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starts in 1990 when members of the fast-disappearing Havasupai tribe gave DNA samples to university
researchers with the goal of providing genetic information about the tribe’s distressing, indeed alarming, rate of
diabetes. Beginning in the 1960s, the Havasupai had experienced a high incidence of type 2 diabetes that led to
amputations and forced many tribal members to leave their village in the Grand Canyon to live closer to dialysis
centers.
From 1990 to 1994, approximately one hundred members of the tribe signed an Arizona State University broad
consent that stated the research was to “study the causes of behavioral/medical disorders.” The consent form was
intentionally confined to clear, simply written, basic information, because English is a second language for many
Havasupai, and few of the tribe’s remaining 650 members had graduated from high school. From the
researchers’ perspective, tribe members had consented to collection of blood and to its use in genetic research
well beyond the research on their particular disease. The Havasupai subjects, by contrast, denied that they gave
permission for any nondiabetes research and insisted that they received inadequate information about and had an
inadequate understanding of the risks of the research before they agreed to participate.
In the course of the research, diabetes was investigated, but the roughly two hundred blood samples were also
put to several additional uses in genetics research having nothing to do with diabetes. One use was to study
mental illness, especially schizophrenia, and another was to examine inbreeding in the tribe. Approximately two
dozen scholarly articles were published on the basis of research on the samples. To the Havasupai, some of this
research was offensive, insulting, stigmatizing, and harmful, and also a provocative examination of taboo
subjects. They filed a lawsuit charging research investigators with a failure to obtain informed consent,
unapproved use of data, infliction of emotional distress, and violation of medical confidentiality. Charges
included fraud, breach of fiduciary duty, negligence, violation of civil rights, and trespass.115
Both the researchers and the review committee at the university apparently did not notice the serious risks of
harm, disrespect, and abuse inherent in the research they conducted subsequent to the broad consent. One article
eventually published by investigators theorized that the tribe’s ancestors had crossed the frozen Bering Sea to
arrive in North America. This thesis directly contradicted the tribe’s traditional stories and cosmology, which
have quasi-religious significance for the tribe. According to its tradition, the tribe originated in the Grand
Canyon and was assigned to be the canyon’s guardian. It was to them disorienting and abhorrent to be told that
the tribe was instead probably of Asian origin and that this hypothesis was developed from studies of their
blood, which also has a special significance to the Havasupai. The thesis also set off legal alarms in the
community, because the Havasupai had previously argued that their origin in the Grand Canyon was the legal
basis of their entitlement to the land. The National Congress of American Indians has pointed out that many
native American tribes are in conditions of vulnerability similar to those of the Havasupai.116
This case presents paradigmatic problems of risk of harm, inadequate consent, and violations of human rights. In
particular, it underlines the need to attend to group, as well as individual, harms, and to a richer conception of
harms in research than often occurs. Research on samples, especially genetics research, can create psychosocial
risks in the absence of physical risks to individual sources of the samples. In this case the tribe was harmed by
the damage to its traditional self-understanding. This case also raises questions about whether scientists took
advantage of a vulnerable population by exploiting its members’ lack of understanding.
In the end, the university made a compensatory payment of $700,000 to the affected tribal members, provided
funds for a school and clinic, and returned the DNA samples. The university acknowledged that the total
compensation package was to “remedy the wrong that was done.”117 The university had worked for years to
establish good relationships with Native American tribes in Arizona, but this reservoir of trust was profoundly
damaged by these events.
CONCLUSION
We have concentrated in this chapter on the principle of nonmaleficence and its implications for refusals of
treatment and requests for assistance in dying when the patient’s death is highly probable or certain or when the
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patient’s quality of life is very poor, and on its implications for the protection of individuals and groups from
harm in the clinic and in research. From the principle that we should avoid causing harm to persons, there is no
direct step to the conclusion that a positive obligation exists to provide benefits such as health care and various
forms of assistance. We have not entered this territory in this chapter on nonmaleficence because obligations to
provide positive benefits are the territory of beneficence and justice. We treat these principles in Chapters 6 and
7.
NOTES
1. 1. W. H. S. Jones, Hippocrates, vol. I (Cambridge, MA: Harvard University Press, 1923), p. 165. See also
Albert R. Jonsen, “Do No Harm: Axiom of Medical Ethics,” in Philosophical and Medical Ethics: Its
Nature and Significance, ed. Stuart F. Spicker and H. Tristram Engelhardt, Jr. (Dordrecht, Netherlands: D.
Reidel, 1977), pp. 27–41; and Steven H. Miles, The Hippocratic Oath and the Ethics of Medicine (New
York: Oxford University Press, 2004).
2. 2. W. D. Ross, The Right and the Good (Oxford: Clarendon, 1930), pp. 21–26; John Rawls, A Theory of
Justice (Cambridge, MA: Harvard University Press, 1971; rev. ed., 1999), p. 114 (1999: p. 98).
3. 3. William Frankena, Ethics, 2nd ed. (Englewood Cliffs, NJ: Prentice Hall, 1973), p. 47.
4. 4. On the idea that there is a priority of avoiding harm, see criticisms by N. Ann Davis, “The Priority of
Avoiding Harm,” in Killing and Letting Die, 2nd ed., ed. Bonnie Steinbock and Alastair Norcross (New
York: Fordham University Press, 1999), pp. 298–354.
5. 5. Bernard Gert presents a theory of this sort. He accepts numerous obligations of nonmaleficence while
holding that beneficence is entirely in the realm of moral ideals, not the realm of obligations. See our
interpretation and critique of his theory in Chapter 10, pp. 428–32.
6. 6. McFall v. Shimp, no. 78-1771 in Equity (C. P. Allegheny County, PA, July 26, 1978); Barbara J.
Culliton, “Court Upholds Refusal to Be Medical Good Samaritan,” Science 201 (August 18, 1978): 596–
97; Mark F. Anderson, “Encouraging Bone Marrow Transplants from Unrelated Donors,” University of
Pittsburgh Law Review 54 (1993): 477ff.
7. 7. Alan Meisel and Loren H. Roth, “Must a Man Be His Cousin’s Keeper?” Hastings Center Report 8
(October 1978): 5–6. For further analysis of this case, see Guido Calabresi, “Do We Own Our Bodies?”
Health Matrix 1 (1991): 5-18, available at Faculty Scholarship Series. Paper 2011, Yale Law School Legal
Scholarship Repository, available at http://digitalcommons.law.yale.edu/fss_papers/2011 (accessed
September 4, 2018).
8. 8. Joel Feinberg, Harm to Others, vol. I of The Moral Limits of the Criminal Law (New York: Oxford
University Press, 1984), pp. 32–36, and also 51–55, 77–78.
9. 9. The best definition of harm is philosophically controversial. For different accounts that would modify
our definition (which is indebted to Feinberg), see Elizabeth Harman, “Harming as Causing Harm,” in
Harming Future Persons, ed. Melinda Roberts and David Wasserman (New York: Springer, 2009), pp.
137–54; Seana Shiffrin, “Wrongful Life, Procreative Responsibility, and the Significance of Harm,” Legal
Theory 5 (1999): 117–48; and Alastair Norcross, “Harming in Context,” Philosophical Studies 123
(2005): 149–73.
10. 10. On some of the many roles of harm and nonmaleficence in bioethics, see Bettina Schöne-Seifert,
“Harm,” in Bioethics (formerly Encyclopedia of Bioethics), 4th ed., ed. Bruce Jennings (Farmington Hills,
MI: Gale, Cengage Learning, 2014), vol. 3, pp. 1381–86.
11. 11. For an interesting account of the central rules of nonmaleficence and their role in bioethics, see
Bernard Gert, Morality: Its Nature and Justification (New York: Oxford University Press, 2005); and
Gert, Charles M. Culver, and K. Danner Clouser, Bioethics: A Systematic Approach (New York: Oxford
University Press, 2006).
12. 12. H. L. A. Hart, Punishment and Responsibility (Oxford: Clarendon, 1968), esp. pp. 136–57; Joel
Feinberg, Doing and Deserving (Princeton, NJ: Princeton University Press, 1970), esp. pp. 187–221; Eric
D’Arcy, Human Acts: An Essay in Their Moral Evaluation (Oxford: Clarendon, 1963), esp. p. 121. For a
revealing empirical study useful for biomedical ethics, see A. Russell Localio, Ann G. Lawthers, Troyen
A. Brennan, et al., “Relation between Malpractice Claims and Adverse Events Due to Negligence—
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Results of the Harvard Medical Practice Study III,” New England Journal of Medicine 325 (1991): 245–
51.
13. 13. On medical negligence, medical error, physician-caused harm, and their connection to medical ethics,
see Virginia A. Sharpe and Alan I. Faden, Medical Harm: Historical, Conceptual, and Ethical Dimensions
of Iatrogenic Illness (New York: Cambridge University Press, 1998); and Milos Jenicek, Medical Error
and Harm: Understanding, Prevention, and Control (New York: CRC Press/Productivity Press of Taylor
& Francis, 2011). See also R. C. Solomon, “Ethical Issues in Medical Malpractice,” Emergency Medicine
Clinics of North America 24, no. 3 (2006): 733–47.
14. 14. As quoted in Angela Roddy Holder, Medical Malpractice Law (New York: Wiley, 1975), p. 42.
15. 15. Cf. the conclusions about physicians’ reservations in Arthur R. Derse, “Limitation of Treatment at the
End-of-Life: Withholding and Withdrawal,” Clinics in Geriatric Medicine 21 (2005): 223–38; Neil J.
Farber et al., “Physicians’ Decisions to Withhold and Withdraw Life-Sustaining Treatments,” Archives of
Internal Medicine 166 (2006): 560–65; and Sharon Reynolds, Andrew B. Cooper, and Martin McKneally,
“Withdrawing Life-Sustaining Treatment: Ethical Considerations,” Surgical Clinics of North America 87
(2007): 919–36, esp. 920–23. For a comprehensive examination of medical ethics issues that have arisen
about this distinction in the British context, see Medical Ethics Department, British Medical Association,
Withholding and Withdrawing Life-prolonging Medical Treatment: Guidance for Decision Making, 3rd ed.
(Oxford: BMJ Books, Blackwell, John Wiley, 2007).
16. 16. The long-standing distinction between “extraordinary” or “heroic” and “ordinary” means of treatment
still sometimes appears in popular discourse, as in this case. It has had a long history, particularly in
Roman Catholic moral theology and philosophy where refusing “ordinary” treatment constituted a suicide
and withholding or withdrawing “ordinary” treatment constituted a homicide. By contrast, refusing or
withholding/withdrawing “extraordinary” treatment could be morally justified in various circumstances.
This distinction has now been largely abandoned because the terms became attached to usual and unusual
or customary and uncustomary treatments, without regard to the balance of benefits and burdens for the
patients receiving those treatments, and proponents of the distinction developed a variety of other morally
irrelevant criteria, such as simple and complex, to explicate these notions. In Roman Catholic thought, the
common replacement terms are “proportionate” and “disproportionate.” See, for example, the United
States Conference of Catholic Bishops (USCB), Ethical and Religious Directives for Catholic Health
Services, 6th ed. (Washington, DC: USCB, issued June 2018), Part 5, available at
http://www.usccb.org/about/doctrine/ethical-and-religious-directives/upload/ethical-religious-directives-
catholic-health-service-sixth-edition-2016-06 (accessed September 11, 2018). On the nature and
evolution of the doctrine in Roman Catholic thought, see Scott M. Sullivan, “The Development and
Nature of the Ordinary/Extraordinary Means Distinction in the Roman Catholic Tradition,” Bioethics 21
(2007): 386–97; Donald E. Henke, “A History of Ordinary and Extraordinary Means,” National Catholic
Bioethics Quarterly 5 (2005): 555–75; and Kevin W. Wildes, “Ordinary and Extraordinary Means and the
Quality of Life,” Theological Studies 57 (1996): 500–512. See also Jos V. M. Welie, “When Medical
Treatment Is No Longer in Order: Toward a New Interpretation of the Ordinary-Extraordinary
Distinction,” National Catholic Bioethics Quarterly 5 (2005): 517–36.
17. 17. This case was presented to one of the authors during a consultation.
18. 18. For defenses of the distinction along these or similar lines, see Daniel P. Sulmasy and Jeremy
Sugarman, “Are Withholding and Withdrawing Therapy Always Morally Equivalent?” Journal of Medical
Ethics 20 (1994): 218–22 (commented on by John Harris, pp. 223–24); and Kenneth V. Iserson,
“Withholding and Withdrawing Medical Treatment: An Emergency Medicine Perspective,” Annals of
Emergency Medicine 28 (1996): 51–54. For opposing positions on the moral equivalence of withholding
and withdrawing, see Lars Øystein Ursin, “Withholding and Withdrawing Life-Sustaining Treatment:
Ethically Equivalent?” American Journal of Bioethics 19 (2019): 10–20; and Dominic Wilkinson, Ella
Butcherine, and Julian Savulescu, “Withdrawal Aversion and the Equivalence Test,” American Journal of
Bioethics 19 (2019): 21–28, followed by several commentaries.
19. 19. In the matter of Spring, Mass. 405 N.E. 2d 115 (1980), at 488–89.
20. 20. Lewis Cohen, Michael Germain, and David Poppel, “Practical Considerations in Dialysis
Withdrawal,” JAMA: Journal of the American Medical Association 289 (2003): 2113–19. A study of a
French population receiving dialysis found that 20.4% of patients “died following withdrawal from
dialysis”: Béatrice Birmelé, Maud François, Josette Pengloan, et al., “Death after Withdrawal from
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Dialysis: The Most Common Cause of Death in a French Dialysis Population,” Nephrology Dialysis
Transplantation 19 (2004): 686–91. The authors hold that discontinuation of dialysis is a more common
cause of death in patients in North America and the United Kingdom than in “the rest of Europe.” A
retrospective study in Australia and New Zealand found that dialysis withdrawal accounted for more than
one in four deaths among patients with end-stage renal disease in the period 1999–2008. See Hoi Wong
Chan et al., “Risk Factors for Dialysis Withdrawal: An Analysis of the Australia and New Zealand
Transplant (ANZDATA) Registry, 1999–2008),” Clinical Journal of the American Society of Nephrology
7, no. 5 (May 7, 2012): 775–81. Some studies, but not all, distinguish death caused by dialysis withdrawal
and death caused by the illness that led to the dialysis withdrawal. See Milagros Ortiz et al., “Dialysis
Withdrawal: Cause of Mortality along a Decade (2004–2014),” Nephrology, Dialysis, Transplantation 32,
issue supplement 3 (May 26, 2017): iii358–iii359.
21. 21. See Rebecca J. Schmidt and Alvin H. Moss, “Dying on Dialysis: The Case for a Dignified
Withdrawal,” Clinical Journal of the American Society of Nephrology 9, no. 1 (2014): 174–80.
22. 22. Robert Stinson and Peggy Stinson, The Long Dying of Baby Andrew (Boston: Little, Brown, 1983), p.
355.
23. 23. Katy Butler, “What Broke My Father’s Heart,” New York Times Magazine, June 18, 2010, available at
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?pagewanted=all (accessed July 4,
2018). A fuller version of the story appears in Butler, Knocking on Heaven’s Door: The Path to a Better
Way of Death (New York: Scribner, 2013). For clinicians’ views and ethical analyses, see Michael B.
Bevins, “The Ethics of Pacemaker Deactivation in Terminally Ill Patients,” Journal of Pain and Symptom
Management 41 (June 2011): 1106–10; T. C. Braun et al., “Cardiac Pacemakers and Implantable
Defibrillators in Terminal Care,” Journal of Pain and Symptom Management 18 (1999): 126–31; Daniel
B. Kramer, Susan L. Mitchell, and Dan W. Brock, “Deactivation of Pacemakers and Implantable
Cardioverter-Defibrillators,” Progress in Cardiovascular Diseases 55, no. 3 (November–December 2012):
290–99; and K. E. Karches and D. P. Sulmasy, “Ethical Considerations for Turning Off Pacemakers and
Defibrillators,” Cardiac Electrophysiology Clinics 7, no. 3 (September 2015): 547–55.
24. 24. Paul Mueller et al., “Deactivating Implanted Cardiac Devices in Terminally Ill Patients: Practices and
Attitudes,” Pacing and Clinical Electrophysiology 31, no. 5 (2008): 560–68. See also the study reported
by Daniel B. Kramer, Aaron S. Kesselheim, Dan W. Brock, and William H. Maisel, “Ethical and Legal
Views of Physicians Regarding Deactivation of Cardiac Implantable Electric Devices: A Quantitative
Assessment,” Heart Rhythm 7, no. 11 (November 2010): 1537–42; and A. S. Kelley et al., “Implantable
Cardioverter-Defibrillator Deactivation at End-of-Life: A Physician Survey,” American Heart Journal 157
(2009): 702–8. For nurses’ concerns and general support for deactivation of cardiovascular implantable
electronic devices, see D. B. Kramer et al., “‘Just Because We Can Doesn’t Mean We Should’: Views of
Nurses on Deactivation of Pacemakers and Implantable Cardioverter-Defibrillators,” Journal of
Interventional Cardiac Electrophysiology 32, no. 3 (December 2011): 243–52.
25. 25. Rachel Lampert et al., “HRS Expert Consensus Statement on the Management of Cardiovascular
Implantable Electronic Devices (CIEDs) in Patients Nearing End of Life or Requesting Withdrawal of
Therapy,” Heart Rhythm 7, no. 7 (July 2010): 1008–25, available at
https://www.heartrhythmjournal.com/article/S1547-5271(10)00408-X/abstract (accessed July 4, 2018).
26. 26. Lampert et al., “HRS Expert Consensus Statement on the Management of Cardiovascular Implantable
Electronic Devices (CIEDs).”
27. 27. Mueller et al., “Deactivating Implanted Cardiac Devices in Terminally Ill Patients: Practices and
Attitudes,” p. 560. More attention needs to be paid to the role and responsibility of the industry
representative in deactivating these devices.
28. 28. See Jeffrey P. Burns and Robert D. Truog, “The DNR Order after 40 Years,” New England Journal of
Medicine 375 (August 11, 2016): 504–6; Susanna E. Bedell and Thomas L. Delbanco, “Choices about
Cardiopulmonary Resuscitation in the Hospital: When Do Physicians Talk with Patients?” New England
Journal of Medicine 310 (April 26, 1984): 1089–93; and Marcia Angell, “Respecting the Autonomy of
Competent Patients,” New England Journal of Medicine 310 (April 26, 1984): 1115–16. In one survey,
50% of the physicians responding opposed unilateral DNR orders; physicians supporting such orders were
more likely to be in pulmonary/critical care medicine. See Michael S. Putnam et al., “Unilateral Do Not
Resuscitate Orders: Physician Attitudes and Practices,” Chest 152, no. 1 (July 2017): 224–25.
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?pagewanted=all
https://www.heartrhythmjournal.com/article/S1547-5271(10)00408-X/abstract
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29. 29. See Evie G. Marcolini, Andrew T. Putnam, and Ani Aydin, “History and Perspectives on Nutrition and
Hydration at the End of Life,” Yale Journal of Biology and Medicine 91, no. 2 (June 2018): 173–76. They
write: “ANH are defined as a group of medical treatments provided to patients who cannot meet their
daily requirements orally, with resultant malnutrition, electrolyte abnormalities, and/or metabolic
derangements. The various modalities to deliver ANH include intravenous hydration and intravenous
parenteral nutrition, nasogastric feeding, and placement of surgical feeding devices to deliver the required
hydration and nourishment.”
30. 30. See Joanne Lynn and James F. Childress, “Must Patients Always Be Given Food and Water?” Hastings
Center Report 13 (October 1983): 17–21; reprinted in By No Extraordinary Means: The Choice to Forgo
Life-Sustaining Food and Water, ed. Joanne Lynn (Bloomington: Indiana University Press, 1986,
expanded edition, 1989), pp. 47–60; and Childress, “When Is It Morally Justifiable to Discontinue
Medical Nutrition and Hydration?” in By No Extraordinary Means, ed. Lynn, pp. 67–83.
31. 31. This case has been adapted with permission from a case presented by Dr. Martin P. Albert of
Charlottesville, Virginia. On problems in nursing homes, see Alan Meisel, “Barriers to Forgoing Nutrition
and Hydration in Nursing Homes,” American Journal of Law and Medicine 21 (1995): 335–82; and Sylvia
Kuo et al., “Natural History of Feeding-Tube Use in Nursing Home Residents with Advanced Dementia,”
Journal of the American Medical Directors Association 10 (2009): 264–70, which concludes that most
feeding tubes are inserted during an acute care hospitalization and are associated with poor survival and
subsequent heavy use of health care. O’Brien and colleagues determined that close to 70% of nursing
home residents prefer not to have a feeding tube placed in cases of permanent brain damage, and many
others shared that preference when they learned that physical restraints might be required: Linda A.
O’Brien et al., “Tube Feeding Preferences among Nursing Home Residents,” Journal of General Internal
Medicine 12 (1997): 364–71. In line with research that has indicated little benefit coupled with
unnecessary suffering, the insertion of feeding tubes in US nursing home residents with advanced
dementia declined substantially from 2000 to 2014: from 12% to 6%, with higher rates of use by black
than white residents. See Susan L. Mitchell et al., “Tube Feeding in US Nursing Home Residents with
Advanced Dementia, 2000–2014,” JAMA: Journal of the American Medical Association 316, no. 7
(2016): 769–70.
32. 32. In the matter of Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied, 429 U.S. 922 (1976). The New Jersey
Supreme Court ruled that the Quinlans could disconnect the mechanical ventilator so that the patient could
“die with dignity.”
33. 33. See Joseph Quinlan, Julia Quinlan, and Phyllis Battell, Karen Ann: The Quinlans Tell Their Story
(Garden City, NY: Doubleday, 1977).
34. 34. In Cruzan v. Director, Missouri Dep’t of Health, 497 U.S. 261 (1990), the US Supreme Court
concluded that a competent person has a constitutionally protected right to refuse lifesaving hydration and
nutrition. Its dicta reflected no distinction between medical and sustenance treatments.
35. 35. See Lois Shepherd, If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo
(Chapel Hill: University of North Carolina Press, 2009); Timothy E. Quill, “Terri Schiavo—A Tragedy
Compounded,” New England Journal of Medicine 352, no. 16 (2005): 1630–33; George J. Annas,
“‘Culture of Life’ Politics at the Bedside—The Case of Terri Schiavo,” New England Journal of Medicine
352, no. 16 (2005): 1710–15; and Tom Koch, “The Challenge of Terri Schiavo: Lessons for Bioethics,”
Journal of Medical Ethics 31 (2005): 376–78). See further Thomas S. Shannon, “Nutrition and Hydration:
An Analysis of the Recent Papal Statement in the Light of the Roman Catholic Bioethical Tradition,”
Christian Bioethics 12 (2006): 29–41.
36. 36. M. I. Del Rio et al., “Hydration and Nutrition at the End of Life: A Systematic Review of Emotional
Impact, Perceptions, and Decision-Making among Patients, Family, and Health Care Staff,” Psycho-
oncology 21, no. 9 (September 2012): 913–21.
37. 37. See C. M. Callahan et al., “Decision-making for Percutaneous Endoscopic Gastrotomy among Older
Adults in a Community Setting,” Journal of the American Geriatrics Society 47 (1999): 1105–9.
38. 38. For a summary of the available evidence, see Howard Brody et al., “Artificial Nutrition and
Hydration: The Evolution of Ethics, Evidence, and Policy,” Journal of General Internal Medicine 26, no.
9 (2011): 1053–58.
39. 39. The RDE has rough precedents that predate the writings of St. Thomas Aquinas (e.g., in St. Augustine
and Abelard). However, the history primarily flows from St. Thomas. See Anthony Kenny, “The History
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of Intention in Ethics,” in Anatomy of the Soul (Oxford: Basil Blackwell, 1973), Appendix; Joseph T.
Mangan, “An Historical Analysis of the Principle of Double Effect,” Theological Studies 10 (1949): 41–
61; and T. A. Cavanaugh, Double-Effect Reasoning: Doing Good and Avoiding Evil (New York: Oxford
University Press, 2006), chap. 1.
40. 40. For an overview of the doctrine of double effect, see Alison McIntyre, “Doctrine of Double Effect,”
The Stanford Encyclopedia of Philosophy (Winter 2014 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/win2014/entries/double-effect/ (accessed June 28, 2018); Suzanne
Uniacke, “The Doctrine of Double Effect,” in Principles of Health Care Ethics, 2nd ed., ed. Richard E.
Ashcroft et al. (Chichester, England: John Wiley, 2007), pp. 263–68. For several representative
philosophical positions, see P. A. Woodward, ed., The Doctrine of Double Effect: Philosophers Debate a
Controversial Moral Principle (Notre Dame, IN: Notre Dame University Press, 2001). In an influential
interpretation, Joseph Boyle reduces the RDE to two conditions: intention and proportionality. “Who Is
Entitled to Double Effect?” Journal of Medicine and Philosophy 16 (1991): 475–94; and “Toward
Understanding the Principle of Double Effect,” Ethics 90 (1980): 527–38.
For criticisms of intention-weighted views, see Timothy E. Quill, Rebecca Dresser, and Dan Brock, “The
Rule of Double Effect—A Critique of Its Role in End-of-Life Decision Making,” New England Journal of
Medicine 337 (1997): 1768–71; Alison MacIntyre, “Doing Away with Double Effect,” Ethics 111, no. 2
(2001): 219–55; and Sophie Botros, “An Error about the Doctrine of Double Effect,” Philosophy 74
(1999): 71–83. T. M. Scanlon rejects the RDE on the grounds that it is not clear how an agent’s intentions
determine the permissibility of an agent’s actions, as the doctrine claims; however, it may still be
appropriate in assessing the reasons an agent saw as bearing on his actions. Scanlon, Moral Dimensions:
Permissibility, Meaning, Blame (Cambridge, MA: Harvard University Press, 2008), esp. Introduction and
chaps. 1–2.
41. 41. For assessments, see Daniel Sulmasy, “Reinventing the Rule of Double Effect,” in The Oxford
Handbook of Bioethics, ed. Bonnie Steinbock (New York: Oxford University Press, 2010), pp. 114–49;
David Granfield, The Abortion Decision (Garden City, NY: Image Books, 1971); and Susan Nicholson,
Abortion and the Roman Catholic Church (Knoxville, TN: Religious Ethics, 1978). See also the criticisms
of the RDE in Donald Marquis, “Four Versions of Double Effect,” Journal of Medicine and Philosophy 16
(1991): 515–44, reprinted in The Doctrine of Double Effect, ed. Woodward, pp. 156–85.
42. 42. See Michael Bratman, Intention, Plans, and Practical Reason (Cambridge, MA: Harvard University
Press, 1987).
43. 43. Alvin I. Goldman, A Theory of Human Action (Englewood Cliffs, NJ: Prentice Hall, 1970), pp. 49–85.
44. 44. See the analysis in Hector-Neri Castañeda, “Intensionality and Identity in Human Action and
Philosophical Method,” Nous 13 (1979): 235–60, esp. 255.
45. 45. Our analysis here draws from Ruth R. Faden and Tom L. Beauchamp, A History and Theory of
Informed Consent (New York: Oxford University Press, 1986), chap. 7.
46. 46. We also follow John Searle in thinking that we cannot reliably distinguish, in many situations, between
acts, effects, consequences, and events. Searle, “The Intentionality of Intention and Action,” Cognitive
Science 4 (1980): 65.
47. 47. This interpretation of double effect is defended by Boyle, “Who Is Entitled to Double Effect?”
48. 48. See the arguments in Joseph Boyle, “Medical Ethics and Double Effect: The Case of Terminal
Sedation,” Theoretical Medicine 25 (2004): 51–60; Boyle, “The Relevance of Double Effect to Decisions
about Sedation at the End of Life,” in Sedation at the End-of-Life: An Interdisciplinary Approach, ed.
Paulina Taboada (Dordrecht: Springer Science+Business Media, 2015), pp. 55–72; Alejandro Miranda,
“The Field of Application of the Principle of the Double Effect and the Problem of Palliative Sedation,” in
Sedation at the End-of-Life, ed. Taboada, pp. 73–90; Kasper Raus, Sigrid Sterckx, and Freddy Mortier,
“Can the Doctrine of Double Effect Justify Continuous Deep Sedation at the End of Life?” in Continuous
Sedation at the End of Life: Ethical, Clinical and Legal Perspectives, ed. Sigrid Sterckx and Kasper Raus
(Cambridge: Cambridge University Press, 2017), pp. 177–201; Alison McIntyre, “The Double Life of
Double Effect,” Theoretical Medicine and Bioethics 25 (2004): 61–74; Daniel P. Sulmasy and Edmund D.
Pellegrino, “The Rule of Double Effect: Clearing Up the Double Talk,” Archives of Internal Medicine 159
(1999): 545–50; Lynn A. Jansen and Daniel Sulmasy, “Sedation, Alimentation, Hydration, and
https://plato.stanford.edu/archives/win2014/entries/double-effect/
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Equivocation: Careful Conversation about Care at the End of Life,” Annals of Internal Medicine 136 (June
4, 2002): 845–49; and Johannes J. M. van Delden, “Terminal Sedation: Source of a Restless Ethical
Debate,” Journal of Medical Ethics 33 (2007): 187–88.
49. 49. See Quill, Dresser, and Brock, “The Rule of Double Effect”; and McIntyre, “The Double Life of
Double Effect.”
50. 50. Lawrence Masek, “Intention, Motives, and the Doctrine of Double Effect,” Philosophical Quarterly
60, no. 240 (July 2010): 567–85, which argues that “the moral permissibility of an action depends at least
partly on how it forms an agent’s character.” See also Masek, Intention, Character, and Double Effect
(Notre Dame, IN: University of Notre Dame Press, 2018).
51. 51. Debates about the proper analysis of the concept of medical futility have been vigorous over the last
few decades. See Dominic James Wilkinson and Julian Savulescu, “Knowing When to Stop: Futility in the
Intensive Care Unit,” Current Opinion in Anesthesiology 24 (April 2011): 160–65; Ben White, Lindy
Willmott, Eliana Close, et al., “What Does ‘Futility’ Mean? An Empirical Study of Doctors’ Perceptions,”
Medical Journal of Australia 204 (2016), available online at
https://www.mja.com.au/journal/2016/204/8/what-does-futility-mean-empirical-study-doctors-perceptions
(accessed June 29, 2018); James L. Bernat, “Medical Futility: Definition, Determination, and Disputes in
Critical Care,” Neurocritical Care 2 (2005): 198–205; D. K. Sokol, “The Slipperiness of Futility,” BMJ:
British Medical Journal 338 (June 5, 2009); E. Chwang, “Futility Clarified,” Journal of Law, Medicine, &
Ethics 37 (2009): 487–95; Baruch A. Brody and Amir Halevy, “Is Futility a Futile Concept?” Journal of
Medicine and Philosophy 20 (1995): 123–44; R. Lofmark and T. Nilstun, “Conditions and Consequences
of Medical Futility,” Journal of Medical Ethics 28 (2002): 115–19; and Loretta M. Kopelman,
“Conceptual and Moral Disputes about Futile and Useful Treatments,” Journal of Medicine and
Philosophy 20 (1995): 109–21. Important books in the debate include Susan B. Rubin, When Doctors Say
No: The Battleground of Medical Futility (Bloomington: Indiana University Press, 1998); and Lawrence J.
Schneiderman and Nancy S. Jecker, Wrong Medicine: Doctors, Patients, and Futile Treatment, 2nd ed.
(Baltimore: Johns Hopkins University Press, 2011). A cross-national view of values, policies, and
practices appears in Alireza Bagheri, ed., Medical Futility: A Cross-National Study (London: Imperial
College Press, 2013)
52. 52. See Wilkinson and Savulescu, “Knowing When to Stop,” which proposes the language of “medically
inappropriate” to highlight that medical professionals are making value judgments and that an intervention
is appropriate or inappropriate for realizing some goal of treatment. For a discussion of the limits of
providing requested “nonbeneficial interventions,” see Allan S. Brett and Laurence B. McCullough,
“Addressing Requests by Patients for Nonbeneficial Interventions,” JAMA: Journal of the American
Medical Association 307 (January 11, 2012): 149–50.
53. 53. G. T. Bosslet et al., “An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to
Requests for Potentially Inappropriate Treatments in Intensive Care Units,” American Journal of
Respiratory Critical Care Medicine 191, no. 11 (2015): 1318–30; J. L. Nates et al., “ICU Admission,
Discharge, and Triage Guidelines: A Framework to Enhance Clinical Operations, Development of
Institutional Policies, and Further Research,”Critical Care Medicine 44, no. 8 (2016): 1553–1602.
54. 54. Bosslett et al., “An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to
Requests for Potentially Inappropriate Treatments in Intensive Care Units,” p. 1318.
55. 55. In a special issue of Perspectives in Biology and Medicine 60, no. 3 (Summer 2017) devoted to futility,
Lawrence J. Schneiderman, Nancy S. Jecker, and Albert R. Jonsen’s “The Abuse of Futility,” responds to
critiques of medical futility and to efforts to develop conceptions of “inappropriate” treatment. In response
to this lead article, twenty-one additional articles address these issues.
56. 56. For a defense of an occasional compassionate futile intervention, see Robert D. Truog, “Is It Always
Wrong to Perform Futile CPR?” New England Journal of Medicine 362 (2010): 477–79. A
counterargument, based on the individual’s right to die with dignity, appears in J. J. Paris, P. Angelos, and
M. D. Schreiber, “Does Compassion for a Family Justify Providing Futile CPR?” Journal of Perinatology
30 (December 2010): 770–72.
57. 57. See further John Luce, “A History of Resolving Conflicts over End-of-Life Care in Intensive Care
Units in the United States,” Critical Care Medicine 38 (August 2010): 1623–29. For constructive
proposals that take account of legitimate disagreement, see Amir Halevy and Baruch A. Brody, “A Multi-
Institution Collaborative Policy on Medical Futility,” JAMA: Journal of the American Medical Association
https://www.mja.com.au/journal/2016/204/8/what-does-futility-mean-empirical-study-doctors-perceptions
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276 (1996): 571–75; and Carolyn Standley and Bryan A. Liang, “Addressing Inappropriate Care Provision
at the End-of-Life: A Policy Proposal for Hospitals,” Michigan State University Journal of Medicine and
Law 15 (Winter 2011): 137–76. Since 1999, the Texas Advance Directives Act, sometimes erroneously
referred to as the “Texas Futile Care Law,” has allowed physicians under certain conditions to unilaterally
discontinue life-sustaining treatments deemed futile, after giving notice and waiting ten days. See the
following discussions: Robert L. Fine, “Point: The Texas Advance Directives Act Effectively and
Ethically Resolves Disputes about Medical Futility,” Chest 136 (2009): 963–67; Robert D. Truog,
“Counterpoint: The Texas Advance Directives Act Is Ethically Flawed: Medical Futility Disputes Must Be
Resolved by a Fair Process,” Chest 136 (2009): 968–71, followed by discussion 971–73; Wilkinson and
Savulescu, “Knowing When to Stop”; and Robert M. Veatch, “So-Called Futile Care: The Experience of
the United States,” in Medical Futility: A Cross-National Study, ed. Bagheri, pp. 24–28. For a proposal to
retain the option in “futility” cases of appeal to the courts because of its benefits at the societal level, see
Douglas B. White and Thaddeus M. Pope, “The Courts, Futility, and the Ends of Medicine,” JAMA:
Journal of the American Medical Association 307 (2012): 151–52.
58. 58. Superintendent of Belchertown State School v. Saikewicz, Mass., 370 N.E. 2d 417 (1977), at 428.
59. 59. Paul Ramsey, Ethics at the Edges of Life: Medical and Legal Intersections (New Haven, CT: Yale
University Press, 1978), p. 155.
60. 60. See President’s Commission for the Study of Ethical Problems in Medicine and Behavioral Research,
Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment Decisions
(Washington, DC: US Government Printing Office, March 1983), chap. 5; and the articles on “The
Persistent Problem of PVS” in Hastings Center Report 18 (February–March 1988): 26–47.
61. 61. Ramsey, Ethics at the Edges of Life, p. 172.
62. 62. President’s Commission, Deciding to Forego Life-Sustaining Treatment.
63. 63. See John D. Lantos and Diane S. Lauderdale, Preterm Babies, Fetal Patients, and Childbearing
Choices (Cambridge, MA: MIT Press, 2015), p. 150. For overviews of ethical issues in neonatal care, see
Lantos, The Lazarus Case: Life-and-Death Issues in Neonatal Care (Baltimore, MD: Johns Hopkins
University Press, 2001); Lantos and William L. Meadow, Neonatal Bioethics: The Moral Challenges of
Medical Innovation (Baltimore, MD: Johns Hopkins University Press, 2006); Alan R. Fleischman,
Pediatric Ethics: Protecting the Interests of Children (New York: Oxford University Press, 2016), chap. 4;
and Dominic Wilkinson, Death or Disability? The ‘Carmentis Machine’ and Decision-Making for
Critically Ill Children (Oxford: Oxford University Press, 2013).
64. 64. For a discussion of a version of this condition, see E. G. Yan et al., “Treatment Decision-making for
Patients with the Herlitz Subtype of Junctional Epidermolysis Bullosa,” Journal of Perinatology 27
(2007): 307–11. According to Julian Savulescu, this is the “best example” of a condition that renders a life
“intolerable and not worth living.” See Savulescu, “Is It in Charlie Gard’s Best Interest to Die?” Lancet
389 (May 13, 2017): 1868–69. The Nuffield Council on Bioethics uses the concept of “intolerability” to
describe situations where life-sustaining treatment would not be in the baby’s “best interests” because of
the burdens imposed by “irremediable suffering.” Critical Care Decisions in Fetal and Neonatal
Medicine: Ethical Issues (London: Nuffield Council on Bioethics, 2006).
65. 65. Lantos and Meadow, Neonatal Bioethics, pp. 16–17.
66. 66. Much of the support for the harm standard, as a replacement of, or as a supplement to, the best interest
standard, builds on the work of Douglas S. Diekema, “Parental Refusals of Medical Treatment: The Harm
Principle as Threshold for State Intervention,” Theoretical Medicine and Bioethics 25, no. 4 (2004): 243–
64; and Diekema, “Revisiting the Best Interest Standard: Uses and Misuses,” Journal of Clinical Ethics
22, no. 2 (2011): 128–33. He argues, and we agree, that the harm standard functions primarily to warrant
state intervention rather than to guide deliberations.
67. 67. For several defenses of the best interest standard, close to ours in many respects, see the following in
the American Journal of Bioethics 18, no. 8 (2018), which is largely devoted to the best interest standard,
the harm standard, and other competing approaches: Johan Christiaan Bester, “The Harm Principle Cannot
Replace the Best Interest Standard: Problems with Using the Harm Principle for Medical Decision Making
for Children,” pp. 9–19; Loretta M. Kopelman, “Why the Best Interest Standard Is Not Self-Defeating,
Too Individualistic, Unknowable, Vague or Subjective,” pp. 34–37; Thaddeus Mason Pope, “The Best
Interest Standard for Health Care Decision Making: Definition and Defense,” pp. 36–38; Peta Coulson-
Smith, Angela Fenwick, and Anneke Lucassen, “In Defense of Best Interests: When Parents and
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Clinicians Disagree,” pp. 67–69. Among the several defenses of the harm standard in this issue is D.
Micah Hester, Kellie R. Lang, Nanibaa’ A. Garrison, and Douglas S. Diekema, “Agreed: The Harm
Principle Cannot Replace the Best Interest Standard … but the Best Interest Standard Cannot Replace the
Harm Principle Either,” pp. 38–41. See also the Diekema articles in the previous note.
68. 68. See Frank A. Chervenak and Laurence B. McCullough, “Nonaggressive Obstetric Management,”
JAMA: Journal of the American Medical Association 261 (June 16, 1989): 3439–40; and their article “The
Fetus as Patient: Implications for Directive versus Nondirective Counseling for Fetal Benefit,” Fetal
Diagnosis and Therapy 6 (1991): 93–100.
69. 69. This case and the accompanying commentaries appear in Alexander A. Kon, Angira Patel, Steven
Leuthner, and John D. Lantos, “Parental Refusal of Surgery in an Infant with Tricuspid Atresia,”
Pediatrics 138, no. 5 (2016): e20161730.
70. 70. See Kon’s comments in Kon, Patel, Leuthner, and Lantos, “Parental Refusal of Surgery in an Infant
with Trisucpid Atresia.”
71. 71. See Patel’s comments in Kon, Patel, Leuthner, and Lantos, “Parental Refusal of Surgery in an Infant
with Tricuspid Atresia.”
72. 72. For a review of this case, see John D. Lantos, “The Tragic Case of Charlie Gard,” JAMA Pediatrics
171, no. 10 (2017): 935–36.
73. 73. Savalescu, “Is It in Charlie Gard’s Best Interest to Die?” 1868–69.
74. 74. Dominic Wilkinson, “Beyond Resources: Denying Parental Requests for Futile Treatment,” Lancet
389 (May 13, 2017): 1866–67. Wilkinson and Savulescu feature the Charlie Gard case in their coauthored
book, Ethics, Conflict and Medical Treatment for Children: From Disagreement to Dissensus (London:
Elsevier, 2018).
75. 75. This is the tack taken by Seema K. Shah, Abby R. Rosenberg, and Douglas S. Diekema, “Charlie Gard
and the Limits of Best Interests,” JAMA Pediatrics 171, no. 10 (October 2017): 937–38. However, the
harm standard, which they defend in place of the best-interest standard, at least in matters of state
intervention, cannot escape value judgments.
76. 76. See Jeff McMahan, “Killing, Letting Die, and Withdrawing Aid,” Ethics 103 (1993): 250–79; James
Rachels, “Killing, Letting Die, and the Value of Life,” in his Can Ethics Provide Answers? And Other
Essays in Moral Philosophy (Lanham, MD: Rowman & Littlefield, 1997), pp. 69–79; Tom L. Beauchamp,
“When Hastened Death Is Neither Killing nor Letting-Die,” in Physician-Assisted Dying, ed. Timothy E.
Quill and Margaret P. Battin (Baltimore: Johns Hopkins University Press, 2004), pp. 118–29; Joachim
Asscher, “The Moral Distinction between Killing and Letting Die in Medical Cases,” Bioethics 22 (2008):
278–85; David Orentlicher, “The Alleged Distinction between Euthanasia and the Withdrawal of Life-
Sustaining Treatment: Conceptually Incoherent and Impossible to Maintain,” University of Illinois Law
Review (1998): 837–59; and various articles in Steinbock and Norcross, eds., Killing and Letting Die, 2nd
ed.
77. 77. Although the term assisted suicide is often used, we use it only when unavoidable. We prefer broader
language, such as “physician-assisted dying” or “physician-arranged dying,” not because of a desire to
find euphemisms but because the broader language provides a more accurate description. Although the
term suicide has the advantage of indicating that the one whose death is brought about authorizes or
performs the final act, other conditions such as prescribing and transporting fatal substances may be as
causally relevant as the “final act” itself. For related conceptual problems, see Franklin G. Miller, Robert
D. Truog, and Dan W. Brock, “Moral Fictions and Medical Ethics,” Bioethics 24 (2010): 453–60; and
Helene Starks, Denise Dudzinski, and Nicole White (from original text written by Clarence H. Braddock
III with Mark R. Tonelli), “Physician Aid-in-Dying,” Ethics in Medicine, University of Washington
School of Medicine (2013), available at https://depts.washington.edu/bioethx/topics/pad.html (accessed
July 2, 2018).
78. 78. Howard Brody, “Messenger Case: Lessons and Reflections,” Ethics-in-Formation 5 (1995): 8–9;
Associated Press, “Father Acquitted in Death of His Premature Baby,” New York Times, Archives 1995,
available at https://www.nytimes.com/1995/02/03/us/father-acquitted-in-death-of-his-premature-baby.html
(accessed July 3, 2018); and John Roberts, “Doctor Charged for Switching Off His Baby’s Ventilator,”
British Medical Journal 309 (August 13, 1994): 430. Subsequent to this case similar cases have arisen in
several countries.
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79. 79. Cf. the diverse array of arguments and conclusions in James Rachels, “Active and Passive
Euthanasia,” New England Journal of Medicine 292 (January 9, 1975): 78–80; Miller, Truog, and Brock,
“Moral Fictions and Medical Ethics”; Roy W. Perrett, “Killing, Letting Die and the Bare Difference
Argument,” Bioethics 10 (1996): 131–39; Dan W. Brock, “Voluntary Active Euthanasia,” Hastings Center
Report 22 (March–April 1992): 10–22; and Tom L. Beauchamp, “The Medical Ethics of Physician-
assisted Suicide,” Journal of Medical Ethics 15 (1999): 437–39 (editorial). Many, perhaps most, of the
books opposed to the legalization of physician-assisted death operate from the premise that the act of
physician-assisted death is wrong because of the inviolability of human life or intrinsic evil of aiming at
death, etc. See, for example, Keown, Euthanasia, Ethics and Public Policy; Neal M. Gorsuch, The Future
of Assisted Suicide and Euthanasia (Princeton, NJ: Princeton University Press, 2006); and Nigel Biggar,
Aiming to Kill: The Ethics of Euthanasia and Assisted Suicide (Cleveland, OH: Pilgrim Press, 2004). By
contrast, see Kevin Yuill, Assisted Suicide: The Liberal, Humanist Case against Legalization
(Houndsmills, Basingstoke, Hampshire, UK: Palgrave Macmillan, 2013), which is particularly concerned
about the “coercive implications” of the legalization of physician-assisted death. For a pro-con debate, see
Emily Jackson and John Keown, Debating Euthanasia (Portland, OR: Hart, 2012).
80. 80. See Joseph J. Fins, A Palliative Ethic of Care: Clinical Wisdom at Life’s End (Sudbury, MA: Jones &
Bartlett, 2006); and Joanne Lynn et al., Improving Care for the End of Life: A Sourcebook for Health Care
Managers and Clinicians (New York: Oxford University Press, 2007).
81. 81. Oregon Death with Dignity Act, Ore. Rev. Stat. § 127.800, available at
https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEA
THWITHDIGNITYACT/Pages/ors.aspx (accessed July 3, 2018). This act explicitly rejects the language
of “physician-assisted suicide.” It prefers the language of a right patients have to make a “request for
medication to end one’s life in a humane and dignified manner.”
82. 82. See Lawrence O. Gostin, “Deciding Life and Death in the Courtroom: From Quinlan to Cruzan,
Glucksberg, and Vacco—A Brief History and Analysis of Constitutional Protection of the ‘Right to Die,’”
JAMA: Journal of the American Medical Association 278 (November 12, 1997): 1523–28; and Yale
Kamisar, “When Is There a Constitutional Right to Die? When Is There No Constitutional Right to Live?”
Georgia Law Review 25 (1991): 1203–42.
83. 83. For discussions, see Douglas Walton, Slippery Slope Arguments (Oxford: Clarendon, 1992); Govert
den Hartogh, “The Slippery Slope Argument,” in A Companion to Bioethics, 2nd ed., ed. Helga Kuhse and
Peter Singer (Malden, MA: Wiley-Blackwell, 2009), pp. 321–31; Christopher James Ryan, “Pulling Up
the Runaway: The Effect of New Evidence on Euthanasia’s Slippery Slope,” Journal of Medical Ethics 24
(1998): 341–44; Bernard Williams, “Which Slopes Are Slippery?” in Moral Dilemmas in Modern
Medicine, ed. Michael Lockwood (Oxford: Oxford University Press, 1985), pp. 126–37; James Rachels,
The End of Life: Euthanasia and Morality (Oxford: Oxford University Press, 1986), chap. 10; and Penney
Lewis, “The Empirical Slippery Slope from Voluntary to Non-Voluntary Euthanasia,” Journal of Law,
Medicine & Ethics 35 (March 1, 2007): 197–210.
84. 84. See Timothy E. Quill and Christine K. Cassel, “Nonabandonment: A Central Obligation for
Physicians,” in Physician-Assisted Dying: The Case for Palliative Care and Patient Choice, ed. Quill and
Battin, chap. 2.
85. 85. See Franklin G. Miller, Howard Brody, and Timothy E. Quill, “Can Physician-Assisted Suicide Be
Regulated Effectively?” Journal of Law, Medicine & Ethics 24 (1996): 225–32. Defenders of slippery-
slope arguments in this context include John Keown, Euthanasia, Ethics and Public Policy: An Argument
Against Legislation (Cambridge: Cambridge University Press, lst ed., 2002, 2nd ed., 2018), which
contends that experience in countries that have legalized either physician-assisted dying or voluntary
euthanasia show the effects of both “logical” and “empirical” slippery slopes; J. Pereira, “Legalizing
Euthanasia or Assisted Suicide: The Illusion of Safeguards and Controls,” Current Oncology 18 (April
2011): e38–45; and David Albert Jones, “Is There a Logical Slippery Slope from Voluntary to
Nonvoluntary Euthanasia?” Kennedy Institute of Ethics Journal 21 (2011): 379–404; B. H. Lerner and A.
L. Caplan, “Euthanasia in Belgium and the Netherlands: On a Slippery Slope?” JAMA Internal Medicine
175 (2015): 1640–41; William G. Kussmaul III, “The Slippery Slope of Legalization of Physician-
Assisted Suicide,” Annals of Internal Medicine 167, no. 8 (October 17, 2017): 595–96.
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Critics of slippery-slope arguments include L. W. Sumner, Assisted Death: A Study in Ethics and Law
(New York: Oxford University Press, 2011); Stephen W. Smith, “Fallacies of the Logical Slippery Slope
in the Debate on Physician-Assisted Suicide and Euthanasia,” Medical Law Review 13, no. 2 (July 1,
2005): 224–43; and Report of the Royal Society of Canada Expert Panel, End-of-Life Decision Making
(Ottawa, ON: Royal Society of Canada, December 2011), available at http://rsc.ca/en/expert-panels/rsc-
reports/end-life-decision-making (accessed July 4, 2018). After examining the laws and practical
experience of jurisdictions around the world that authorize assisted dying in some cases, the latter
concludes: “Despite the fears of opponents, it is … clear that the much-feared slippery slope has not
emerged following decriminalization, at least not in those jurisdictions for which evidence is available” (p.
90).
86. 86. See, for example, Timothy E. Quill, “Legal Regulation of Physician-Assisted Death—The Latest
Report Cards,” New England Journal of Medicine 356 (May 10, 2007): 1911–13; Susan Okie, “Physician-
Assisted Suicide—Oregon and Beyond,” New England Journal of Medicine 352 (April 21, 2005): 1627–
30; Courtney Campbell, “Ten Years of ‘Death with Dignity,’” New Atlantis (Fall 2008): 33–46; and
National Academies of Sciences, Engineering, and Medicine, Physician-Assisted Death: Scanning the
Landscape: Proceedings of a Workshop (Washington, DC: National Academies Press, 2018).
87. 87. The information in this paragraph appears in the annual reports by the Oregon Health Authority. The
Oregon Death with Dignity Act requires the Oregon Health Authority to publish information about
patients and physicians who participate under the act, including the publication of an annual statistical
report. See Oregon Health Authority, Oregon Death with Dignity Act 2017 Data Summary, as published in
February 2018, available at
https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEA
THWITHDIGNITYACT/Documents/year20 (accessed June 29, 2018). See also The Oregon Death
with Dignity Act: A Guidebook for Health Care Professionals Developed by the Task Force to Improve the
Care of Terminally-Ill Oregonians, convened by The Center for Ethics in Health Care, Oregon Health &
Science University, 1st ed. (print), March 1998; current ed. (2008 online), available at
http://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-
Death-with-Dignity-Act-Guidebook (accessed June 29, 2018). Many Oregonians are opposed to the
Oregon law, but many others believe that it does not go far enough because it in effect excludes many
persons with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and various other degenerative
diseases, at least until their deaths are predicted to occur within six months.
88. 88. See Udo Schüklenk et al., “End-of-Life Decision-making in Canada: The Report by the Royal Society
of Canada Expert Panel on End-of-life Decision-making,” Bioethics 25 (2011) Suppl 1:1–73. This Expert
Panel examines the international experience with laws authorizing assisted dying; Guenter Lewy, Assisted
Death in Europe and America: Four Regimes and Their Lessons (New York: Oxford University Press,
2011); and the often updated information on various national policies at the UK site, My Death–My
Decision, “Assisted Dying in Other Countries,” available at https://www.mydeath-
mydecision.org.uk/info/assisted-dying-in-other-countries/ (accessed July 3, 2018).
89. 89. See Bernard Gert, James L. Bernat, and R. Peter Mogielnicki, “Distinguishing between Patients’
Refusals and Requests,” Hastings Center Report 24 (July–August 1994): 13–15; Leigh C. Bishop et al.,
“Refusals Involving Requests” (Letters and Responses), Hastings Center Report 25 (July–August 1995):
4; Diane E. Meier et al., “On the Frequency of Requests for Physician Assisted Suicide in American
Medicine,” New England Journal of Medicine 338 (April 23, 1998): 1193–201; and Gerald Dworkin,
Raymond G. Frey, and Sissela Bok, Euthanasia and Physician-Assisted Suicide: For and Against (New
York: Cambridge University Press, 1998).
90. 90. As of July, 2018, physician-assisted death had been legalized in eight legal jurisdictions in the United
States, whether through legislation, referendum, or a state supreme court decision: Oregon, Washington,
Montana, Vermont, California, Colorado, District of Columbia, and Hawaii. For an overview, see Ezekiel
J. Emanuel et al., “Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United
States, Canada, and Europe,” JAMA: Journal of the American Medical Association 316, no. 1 (2016): 79–
90. For another overview, from a variety of perspectives, see National Academies of Sciences,
Engineering, and Medicine, Physician-Assisted Death: Scanning the Landscape: Proceedings of a
Workshop.
http://rsc.ca/en/expert-panels/rsc-reports/end-life-decision-making
https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20
http://www.ohsu.edu/xd/education/continuing-education/center-for-ethics/ethics-outreach/upload/Oregon-Death-with-Dignity-Act-Guidebook
https://www.mydeath-mydecision.org.uk/info/assisted-dying-in-other-countries/
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91. 91. Cf. Allen Buchanan, “Intending Death: The Structure of the Problem and Proposed Solutions,” in
Intending Death, ed. Beauchamp, esp. pp. 34–38; Frances M. Kamm, “Physician-Assisted Suicide, the
Doctrine of Double Effect, and the Ground of Value,” Ethics 109 (1999): 586–605; and Matthew Hanser,
“Why Are Killing and Letting Die Wrong?” Philosophy and Public Affairs 24 (1995): 175–201.
92. 92. Many moral arguments for justified physician-aid-in-dying focus on the relief of pain and suffering.
However the “end of life concerns” most frequently listed by persons in Oregon who used their prescribed
medication to end their lives were the following: diminished ability to engage in activities making life
enjoyable (88.1%), loss of autonomy (87.4%), loss of dignity (67.1%), burden on family, friends, or
caregivers (55.2%), and loss of control of bodily functions (37.1%). Only 21% listed inadequate pain
control or concern about it. Oregon Health Authority, Oregon Death with Dignity Act 2017 Data
Summary.
93. 93. New York Times, June 6, 1990, pp. A1, B6; June 7, 1990, pp. A1, D22; June 9, 1990, p. A6; June 12,
1990, p. C3; Newsweek, June 18, 1990, p. 46. Kevorkian’s own description is in his Prescription:
Medicide (Buffalo, NY: Prometheus Books, 1991), pp. 221–31. He was later convicted and served time in
prison not for his more than one hundred acts of assisting in a person’s suicide but for a single case of
actively killing a patient (voluntary euthanasia). See Michael DeCesare, Death on Demand: Jack
Kevorkian and the Right-to-Die Movement (Lanham, MD: Rowman & Littlefield, 2015).
94. 94. Timothy E. Quill, “Death and Dignity: A Case of Individualized Decision Making,” New England
Journal of Medicine 324 (March 7, 1991): 691–94, reprinted with additional analysis in Quill, Death and
Dignity (New York: Norton, 1993); and Timothy Quill, Caring for Patients at the End of Life: Facing an
Uncertain Future Together (Oxford: Oxford University Press, 2001).
95. 95. J. K. Kaufert and T. Koch, “Disability or End-of-Life: Competing Narratives in Bioethics,”
Theoretical Medicine 24 (2003): 459–69. See also Kristi L. Kirschner, Carol J. Gill, and Christine K.
Cassel, “Physician-Assisted Death in the Context of Disability,” in Physician-Assisted Suicide, ed. Robert
F. Weir (Bloomington: Indiana University Press, 1997), pp. 155–66.
96. 96. For an examination of relevant US law, see Norman L. Cantor, Making Medical Decisions for the
Profoundly Mentally Disabled (Cambridge, MA: MIT Press, 2005).
97. 97. See Hans-Martin Sass, Robert M. Veatch, and Rihito Kimura, eds., Advance Directives and Surrogate
Decision Making in Health Care: United States, Germany, and Japan (Baltimore: Johns Hopkins
University Press, 1998); Nancy M. P. King, Making Sense of Advance Directives (Dordrecht, Netherlands:
Kluwer Academic, 1991; rev. ed. 1996); Peter Lack, Nikola Biller-Andorno, and Susanne Brauer, eds.,
Advance Directives (New York: Springer, 2014); and American Bar Association, “State Health Care
Power of Attorney Statutes: Selected Characteristics January 2018,” available at
https://www.americanbar.org/content/dam/aba/administrative/law_aging/state-health-care-power-of-
attorney-statutes.authcheckdam (accessed July 4, 2018).
98. 98. See, for example, the President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging
Society (Washington, DC: President’s Council on Bioethics, 2005), chap. 2; Alasdair R. MacLean,
“Advance Directives, Future Selves and Decision-Making,” Medical Law Review 14 (2006): 291–320; A.
Fagerlin and C. E. Schneider, “Enough: The Failure of the Living Will,” Hastings Center Report 34, no. 2
(2004): 30–42; Dan W. Brock, “Advance Directives: What Is It Reasonable to Expect from Them?”
Journal of Clinical Ethics 5 (1994): 57–60; Mark R. Tonelli, “Pulling the Plug on Living Wills: A Critical
Analysis of Advance Directives,” Chest 110 (1996): 816–22; David I. Shalowitz, Elizabeth Garrett-Mayer,
and David Wendler, “The Accuracy of Surrogate Decision Makers: A Systematic Review,” Archives of
Internal Medicine 165 (2006): 493–97; Marcia Sokolowski, Dementia and the Advance Directive: Lessons
from the Bedside (New York: Springer, 2018); and Lesley S. Castillo, Brie A. Williams, Sarah M. Hooper,
et al., “Lost in Translation: The Unintended Consequences of Advance Directive Law on Clinical Care,”
Annals of Internal Medicine 154 (January 2011), available at http://annals.org/aim/article-
abstract/746727/lost-translation-unintended-consequences-advance-directive-law-clinical-care (accessed
July 4, 2018).
99. 99. See, for instance, Karen Detering and Maria J. Silveira (and Section Editor, Robert M. Arnold),
“Advance Care Planning and Advance Directives,” UpToDate (online), Wolters Kluwer, 2018, available at
https://www.uptodate.com/contents/advance-care-planning-and-advance-directives (accessed July 4,
2018); Benjamin H. Levi and Michael J. Green, “Too Soon to Give Up: Re-Examining the Value of
Advance Directives,” American Journal of Bioethics 10 (April 2010): 3–22 (and responses thereafter);
https://www.americanbar.org/content/dam/aba/administrative/law_aging/state-health-care-power-of-attorney-statutes.authcheckdam
http://annals.org/aim/article-abstract/746727/lost-translation-unintended-consequences-advance-directive-law-clinical-care
https://www.uptodate.com/contents/advance-care-planning-and-advance-directives
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Bernard Lo and Robert Steinbrook, “Resuscitating Advance Directives,” Archives of Internal Medicine
164 (2004): 1501–6; Robert S. Olick, Taking Advance Directives Seriously: Prospective Autonomy and
Decisions near the End of Life (Washington, DC: Georgetown University Press, 2001); and Joanne Lynn
and N. E. Goldstein, “Advance Care Planning for Fatal Chronic Illness: Avoiding Commonplace Errors
and Unwarranted Suffering,” Annals of Internal Medicine 138 (2003): 812–18.
100. 100. See, for example, Joan M. Teno, Joanne Lynn, R. S. Phillips, et al., “Do Formal Advance Directives
Affect Resuscitation Decisions and the Use of Resources for Seriously Ill Patients?” SUPPORT
Investigators: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments,
Journal of Clinical Ethics 5 (1994): 23–30.
101. 101. Maria J. Silveira, Scott Y. H. Kim, and Kenneth M. Langa, “Advance Directives and Outcomes of
Surrogate Decision Making before Death,” New England Journal of Medicine 362 (April 1, 2010): 1211–
18; Joan Teno, Joanne Lynn, Neil Wenger, et al., “Advance Directives for Seriously Ill Hospitalized
Patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention,” Journal
of the American Geriatrics Society, published April 2015, available at
“https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1532-5415.1997.tb05178.x (accessed July 4, 2018); and
Karen M. Detering, Andrew D. Hancock, Michael C. Reade, and William Silvester, “The Impact of
Advance Care Planning on End of Life Care in Elderly Patients: Randomised Controlled Trial,” BMJ:
British Medical Journal 340 (2010): c1345, available at
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2844949/ (accessed June 30, 2018). Debate continues
about whether advance directives have—or for that matter, should have—an impact on health care costs.
See Douglas B. White and Robert M. Arnold, “The Evolution of Advance Directives,” JAMA: Journal of
the American Medical Association 306 (October 5, 2011): 1485–86.
102. 102. Su Hyun Kim and Diane Kjervik, “Deferred Decision Making: Patients’ Reliance on Family and
Physicians for CPR Decisions in Critical Care,” Nursing Ethics 12 (2005): 493–506. For a fuller
examination of the family in bioethical matters, see Hilde Lindemann Nelson and James Lindemann
Nelson, The Patient in the Family: An Ethic of Medicine and Families, Reflective Bioethics (New York:
Routledge, 1995).
103. 103. See Judith Areen, “The Legal Status of Consent Obtained from Families of Adult Patients to
Withhold or Withdraw Treatment,” JAMA: Journal of the American Medical Association 258 (July 10,
1987): 229–35; Charles B. Sabatino, “The Evolution of Health Care Advance Planning Law and Policy,”
Milbank Quarterly 88 (2010): 211–38; and American Bar Association, Commission on Law and Aging,
“Health Care Decision Making”; see the relevant publications on surrogate decision making, available at
https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html (accessed
July 4, 2018).
104. 104. Patricia King, “The Authority of Families to Make Medical Decisions for Incompetent Patients after
the Cruzan Decision,” Law, Medicine & Health Care 19 (1991): 76–79.
105. 105. Mark P. Aulisio, “Standards for Ethical Decision Making at the End of Life,” in Advance Directives
and Surrogate Decision Making in Illinois, ed. Thomas May and Paul Tudico (Springfield, IL: Human
Services Press, 1999), pp. 25–26.
106. 106. For some significant subtleties, see Susan P. Shapiro, “Conflict of Interest at the Bedside,” in Conflict
of Interest in Global, Public and Corporate Governance, ed. Anne Peters and Lukas Handschin
(Cambridge: Cambridge University Press, 2012), pp. 334–54.
107. 107. David Wendler, “The Effect on Surrogates of Making Treatment Decisions for Others,” Annals of
Internal Medicine 154 (March 1, 2011): 336–46.
108. 108. David E. Weissman, “Decision Making at a Time of Crisis Near the End of Life,” JAMA: Journal of
the American Medical Association 292 (2004): 1738–43.
109. 109. For an analysis of the role of courts and the connection to valid consent, see M. Strätling, V. E.
Scharf, and P. Schmucker, “Mental Competence and Surrogate Decision-Making towards the End of
Life,” Medicine, Health Care and Philosophy 7 (2004): 209–15.
110. 110. See our discussions in Chapter 3, pp. 89–92, and Chapter 7, pp. 286–89.
111. 111. The facts of the case and observations about it are found in Peter Pronovost, Dale Needham, Sean
Berenholtz, et al., “An Intervention to Decrease Catheter-Related Bloodstream Infections in the ICU,”
New England Journal of Medicine 355 (2006): 2725–32; and Mary Ann Baily, “Harming through
Protection?” New England Journal of Medicine 358 (2008): 768–69.
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1532-5415.1997.tb05178.x
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2844949/
https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making.html
file:///C:/Users/dgsan/Downloads/Chap3.xhtml#ct3
file:///C:/Users/dgsan/Downloads/Chap3.xhtml#Page_89
file:///C:/Users/dgsan/Downloads/Chap3.xhtml#Page_92
file:///C:/Users/dgsan/Downloads/Chap7.xhtml#ct7
file:///C:/Users/dgsan/Downloads/Chap7.xhtml#Page_286
file:///C:/Users/dgsan/Downloads/Chap7.xhtml#Page_289
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112. 112. US Department of Health and Human Services, Office for Human Research Protections, OHRP
Statement Regarding the New York Times Op-Ed Entitled “A Lifesaving Checklist,” News, January 15,
2008, available at http://www.hhs.gov/ohrp/news/recentnews.html#20080215 (accessed December 5,
2011).
113. 113. See Holly Fernandez Lynch, Barbara E. Bierer, I. Glenn Cohen, and Suzanne M. Rivera, eds.,
Specimen Science: Ethics and Policy Implications, Basic Bioethics (Cambridge, MA: MIT Press, 2017).
114. 114. Allen Buchanan, “An Ethical Framework for Biological Samples Policy,” in National Bioethics
Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy
Guidance, vol. 2 (Rockville, MD: National Bioethics Advisory Commission, January 2000); Christine
Grady et al., “Broad Consent for Research with Biological Samples: Workshop Conclusions,” American
Journal of Bioethics 15 (2015): 34–42; Teddy D. Warner et al., “Broad Consent for Research on
Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers,” Journal of Empirical
Research on Human Research Ethics (February 2018), available at
http://journals.sagepub.com/doi/abs/10.1177/1556264617751204 (accessed July 5, 2018); Karen J.
Maschke, “Wanted: Human Biospecimens,” Hastings Center Report 40, no. 5 (2010): 21–23; and Rebecca
D. Pentz, Laurent Billot, and David Wendler, “Research on Stored Biological Samples: Views of African
American and White American Cancer Patients,” American Journal of Medical Genetics, published online
March 7, 2006, http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.31154/full. For a thorough examination,
from various perspectives, of broad consent as well as other ethical issues in research on biospecimens,
such as privacy, justice, and governance, see Lynch, Bierer, Cohen, and Rivera, eds., Specimen Science:
Ethics and Policy Implications, which includes an adapted version of Grady et al., “Broad Consent for
Research with Biological Samples,” pp. 167–84.
115. 115. Havasupai Tribe of Havasupai Reservation v. Arizona Bd. of Regents, 204 P.3d 1063 (Ariz. Ct. App.
2008); Dan Vorhaus, “The Havasupai Indians and the Challenge of Informed Consent for Genomic
Research,” The Privacy Report, available at
http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-
informed-consent-for-genomic-research/ (accessed June 30, 2018); Amy Harmon, “Indian Tribe Wins
Fight to Limit Research of Its DNA,” New York Times, April 21, 2010, p. A1, available at
http://www.nytimes.com/2010/04/22/us/22dna.html (accessed June 30, 2018); and Amy Harmon,
“Havasupai Case Highlights Risks in DNA Research,” New York Times, April 22, 2010, available at
http://www.nytimes.com/2010/04/22/us/22dnaside.html (accessed June 30, 2018).
116. 116. See Michelle M. Mello and Leslie E. Wolf, “The Havasupai Indian Tribe Case—Lessons for
Research Involving Stored Biological Samples,” New England Journal of Medicine 363 (July 15, 2010):
204–7; American Indian and Alaska Native Genetics Resources, National Congress of American Indians,
“Havasupai Tribe and the Lawsuit Settlement Aftermath,” available at http://genetics.ncai.org/case-
study/havasupai-Tribe.cfm (accessed July 4, 2018); and Nanibaa’ A. Garrison and Mildred K. Cho,
“Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit,” AJOB
Primary Research 4 (2013): 55–63.
117. 117. Amy Harmon, “Where’d You Go with My DNA?” New York Times, April 25, 2010, available at
http://www.nytimes.com/2010/04/25/weekinreview/25harmon.html?ref=us (accessed June 30, 2018).
http://www.hhs.gov/ohrp/news/recentnews.html#20080215
http://journals.sagepub.com/doi/abs/10.1177/1556264617751204
http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.31154/full
http://www.genomicslawreport.com/index.php/2010/04/21/the-havasupai-indians-and-the-challenge-of-informed-consent-for-genomic-research/
http://www.nytimes.com/2010/04/22/us/22dna.html
http://www.nytimes.com/2010/04/22/us/22dnaside.html
http://genetics.ncai.org/case-study/havasupai-Tribe.cfm
http://www.nytimes.com/2010/04/25/weekinreview/25harmon.html?ref=us
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6
Beneficence
We have seen in the last two chapters that morality requires that we treat persons autonomously and refrain from
harming them, but morality also requires that we contribute to their welfare. Principles of beneficence
potentially demand more than the principle of nonmaleficence, because agents must take positive steps to help
others, not merely refrain from harmful acts. An implicit assumption of beneficence undergirds all medical and
health care professions and their institutional settings. For example, attending to the welfare of patients—not
merely avoiding harm—is at the heart of medicine’s goal, rationale, and justification. Likewise, preventive
medicine, public health, and biomedical research embrace values of public beneficence.
We examine two principles of beneficence in this chapter: positive beneficence and utility. The principle of
positive beneficence requires agents to provide benefits to others. The principle of utility requires agents to
balance benefits, risks, and costs to produce the best overall results. We also explore the virtue of benevolence,
obligatory beneficence, and nonobligatory ideals of beneficence. We then show how to handle conflicts between
beneficence and respect for autonomy that occur in paternalistic refusals to accept a patient’s wishes and in
public policies designed to protect or improve individuals’ health. Thereafter, this chapter focuses on proposals
to balance benefits, risks, and costs through analytical methods designed to implement the principle of utility in
both health policy and clinical care. We conclude that these analytical methods have a useful, albeit limited, role
as aids in decision making.
THE CONCEPT OF BENEFICENCE AND PRINCIPLES OF BENEFICENCE
In ordinary English, the term beneficence connotes acts or qualities of mercy, kindness, friendship, generosity,
charity, and the like. We use the term in this chapter to cover beneficent action in a broad sense to include all
norms, dispositions, and actions with the goal of benefiting or promoting the well-being of other persons.
Benevolence refers to the character trait, or virtue, of being disposed to act for the benefit of others. Principle of
beneficence refers to a statement of a general moral obligation to act for the benefit of others. Many morally
commendable acts of beneficence are not obligatory, but some are obligatory.
Beneficence and benevolence have played central roles in certain ethical theories. Utilitarianism, for example, is
built on the single principle of beneficence referred to as the principle of utility. During the Scottish
Enlightenment, major figures, including Francis Hutcheson and David Hume, made benevolence the centerpiece
of their common-morality theories. Some of these theories closely associate benefiting others with the goal of
morality itself. We concur that obligations to confer benefits, to prevent and remove harms, and to weigh an
action’s possible goods against its costs and possible harms are central to the moral life. However, principles of
beneficence are not sufficiently foundational to ground all other moral principles and rules in the way many
utilitarians have maintained. (See further our discussion of utilitarian theory in Chapter 9, pp. 389–94.)
The principle of utility in our account in this chapter is therefore not identical to the classic utilitarian principle
of utility. Whereas utilitarians view utility as a fundamental, absolute principle of ethics, we treat it as one
among a number of equally important prima facie principles. The principle of utility that we defend is
legitimately overridden by other moral principles in a variety of circumstances, and likewise it can override
other prima facie principles under various conditions.
OBLIGATORY BENEFICENCE AND IDEAL BENEFICENCE
Some deny that morality imposes positive obligations of beneficence. They hold that beneficence is purely a
virtuous ideal or an act of charity, and thus that persons do not violate obligations of beneficence if they fail to
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act beneficently.1 These views rightly indicate a need to clarify insofar as possible the points at which
beneficence is optional and the points at which it is obligatory.
An instructive and classic example of this problem appears in the New Testament parable of the Good
Samaritan, which illustrates several problems in interpreting beneficence. In this parable, robbers beat and
abandon a “half-dead” man traveling from Jerusalem to Jericho. After two travelers pass by the injured man
without rendering help, a Samaritan sees him, feels compassion, binds up his wounds, and brings him to an inn
to take care of him. In having compassion and showing mercy, the Good Samaritan expressed an attitude of
caring about the injured man and he also took care of him. Both the Samaritan’s motives and his actions were
beneficent. Common interpretations of the parable suggest that positive beneficence is here an ideal rather than
an obligation, because the Samaritan’s act seems to exceed ordinary morality. But even if the case of the
Samaritan does present an ideal of conduct, there are some obligations of beneficence.
Virtually everyone agrees that the common morality does not contain a principle of beneficence that requires
severe sacrifice and extreme altruism—for example, putting one’s life in grave danger to provide medical care or
donating both of one’s kidneys for transplantation. Only ideals of beneficence incorporate such extreme
generosity. Likewise, we are not morally required to benefit persons on all occasions, even if we are in a position
to do so. For example, we are not morally required to perform all possible acts of generosity or charity that
would benefit others. Much beneficent conduct constitutes ideal, rather than obligatory, action; and the line
between an obligation of beneficence and a moral ideal of beneficence is often unclear. (See our treatment of this
subject in the section on supererogation in Chapter 2, pp. 46–48.)
The principle of positive beneficence supports an array of prima facie rules of obligation, including the
following:
1. 1. Protect and defend the rights of others.
2. 2. Prevent harm from occurring to others.
3. 3. Remove conditions that will cause harm to others.
4. 4. Help persons with disabilities.
5. 5. Rescue persons in danger.
Distinguishing Rules of Beneficence from Rules of Nonmaleficence
Rules of beneficence differ in several ways from those of nonmaleficence. In Chapter 5 we argued that rules of
nonmaleficence (1) are negative prohibitions of action, (2) must be followed impartially, and (3) provide moral
reasons for legal prohibitions of certain forms of conduct. By contrast, rules of beneficence (1) present positive
requirements of action, (2) need not always be followed impartially, and (3) generally do not provide reasons for
legal punishment when agents fail to abide by them.
The second condition of impartial adherence asserts that we are morally prohibited by rules of nonmaleficence
from causing harm to anyone. We are obligated to act nonmaleficently toward all persons at all times (although
the principle of nonmaleficence is sometimes justifiably overridden when it comes into conflict with other
principles). By contrast, obligations of beneficence often permit us to help or benefit those with whom we have
special relationships when we are not required to help or benefit those with whom we have no such relationship.
With family, friends, and others of our choice, morality ordinarily allows us to practice beneficence with
partiality. Nonetheless, we will show that we are obligated to follow impartially some rules of beneficence, such
as those requiring efforts to rescue strangers when rescue efforts pose little risk to the prospective rescuer.
General and Specific Beneficence
A distinction between specific and general beneficence dispels some of the confusion surrounding the distinction
between obligatory beneficence and nonobligatory moral ideals of beneficence. Specific beneficence usually
rests on moral relations, contracts, or special commitments and is directed at particular parties, such as children,
friends, contractors, or patients. For instance, many specific obligations of beneficence in health care—often
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referred to as duties—rest on a health professional’s assumption of obligations through entering a profession and
taking on professional roles. By contrast, general beneficence is directed beyond special relationships to all
persons.
Virtually everyone agrees that all persons are obligated to act in the interests of their children, friends, and other
parties in special relationships. The role responsibilities of health professionals to take care of patients and
subjects provide many examples. However, the idea of a general obligation of beneficence is more controversial.
W. D. Ross suggests that obligations of general beneficence “rest on the mere fact that there are other beings in
the world whose condition we can make better.”2 From this perspective, general beneficence obligates us to
benefit persons whom we do not know or with whose views we are not sympathetic. The notion that we have the
same impartial obligations of beneficence to innumerable persons we do not know as we have to our families is
overly demanding and impractical. It is also perilous because this standard may divert attention from our
obligations to those with whom we have special moral relationships, and to whom our responsibilities are clear
rather than indefinite. The more widely we generalize obligations of beneficence, the less likely we will be to
meet our primary responsibilities. For this reason, among others, the common morality recognizes significant
limits to the scope of general obligations of beneficence.
Some writers try to set these limits by distinguishing between the removal of harm, the prevention of harm, and
the promotion of benefit. In developing a principle of “the obligation to assist,” Peter Singer has throughout his
career been interested in how to reduce the evils of global harm and suffering in the most effective manner. He
distinguishes preventing evil from promoting good, and contends that “if it is in our power to prevent something
bad from happening, without thereby sacrificing anything of comparable moral importance, we ought, morally,
to do it.”3 His major argument is that serious shortages of food, shelter, and health care threaten human life and
welfare but are preventable. If any given person has some capacity to act to prevent these evils—for example, by
donation to aid agencies—without loss of goods of comparable importance, this person acts unethically by not
contributing to alleviate these shortages. Singer’s key point is that in the face of preventable disease and poverty
we are morally obligated to donate time or resources toward their eradication until we reach a level at which, by
giving more, we would cause as much suffering to ourselves as we would relieve through our gift. This highly
demanding principle of beneficence requires all of us with the power to do so to invest in rescuing needy persons
globally.
Singer’s criterion of comparable importance sets a limit on sacrifice: We ought to donate time and resources
until we reach a level at which, by giving more, we would sacrifice something of comparable moral importance.
At this level of sacrifice we might cause as much suffering to ourselves as we would relieve through our gift.
While Singer leaves open the question of what counts as comparably morally important, his argument implies
that morality sometimes requires us to make large personal sacrifices to rescue needy persons around the world.
As judged by common-morality standards, this account is overdemanding, even though it sets forth an admirable
moral ideal. The requirement that persons seriously disrupt reasonable life plans in order to benefit the sick,
undereducated, or starving exceeds the limits of basic obligations. In short, Singer’s principle expresses a
commendable moral ideal of beneficence, but it is doubtful that the principle can be justifiably claimed to be a
general obligation of beneficence.
Singer resists this assessment. He regards ordinary morality as endorsing a demanding harm prevention
principle. He assesses the almost universal lack of a commitment to contribute to poverty relief as a failure to
draw the correct implications from the moral principle(s) of beneficence that all moral persons accept. We
respond, constructively, to this line of argument in the next section, where we treat the limits of obligations of
rescue. The claim that Singer-type beneficence makes excessively strong demands is, we will argue, best tested
by these rescue cases. We offer a five-condition analysis of beneficence that we judge more satisfactory than
Singer’s principle.
Singer has countered objections that his principle sets an overly demanding standard. Although he still adheres
to his exacting principle of beneficence, he acknowledges that it may be maximally productive to publicly
advocate a less demanding principle. He has suggested a percentage of income such as 10%, which is more than
a small donation, but not so large as to be at the elevated level of a saint.4 This revised thesis more appropriately
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sets limits on the scope of the obligation of beneficence—limits that reduce required costs and impacts on the
agent’s life plans and that make meeting one’s obligations a realistic possibility.
Singer also has offered more complicated formulas about how much one should donate and has sought to
identify the social conditions that motivate people to give.5 He responds to critics6 by conceding that the limit of
what we should publicly advocate as a level of giving is a person’s “fair share” of what is needed to relieve
poverty and other problems. A fair share may be more or may be less than his earlier formulations suggested, but
Singer seems to view the fair-share conception as a realistic goal. His attention to motivation to contribute to
others illuminates one dimension of the nature and limits of beneficence. Of course, obligation and motivation
are distinguishable, and, as Singer appreciates, it will prove difficult in many circumstances to motivate people
to live up to their obligations (as Singer conceives them) to rescue individuals in need.
The Duty of Rescue as Obligatory Beneficence
Some circumstances eliminate discretionary choice regarding beneficiaries of our beneficence. Consider the
stock example of a passerby who observes someone drowning but stands in no special moral relationship to the
drowning person. The obligation of beneficence is not sufficiently robust to require a passerby who is a poor
swimmer to risk his or her life by trying to swim a hundred yards to rescue someone drowning in deep water.
Nonetheless, the passerby who is well-placed to help the victim in some way, without incurring a significant risk
to himself or herself, has a moral obligation to do so. If the passerby does nothing—for example, fails to alert a
nearby lifeguard or fails to call out for help—the failure is morally culpable as a failure of obligation. The
obligation to help here, in the absence of significant risk or cost to the agent, eliminates the agent’s discretionary
choice.
Apart from close moral relationships, such as contracts or the ties of family or friendship, we propose that a
person X has a prima facie obligation of beneficence, in the form of a duty of rescue, toward a person Y if and
only if each of the following conditions is satisfied (assuming that X is aware of the relevant facts):7
1. 1. Y is at risk of significant loss of or damage to life, health, or some other basic interest.
2. 2. X’s action is necessary (singly or in concert with others) to prevent this loss or damage.
3. 3. X’s action (singly or in concert with others) will probably prevent this loss or damage.8
4. 4. X’s action would not present significant risks, costs, or burdens to X.
5. 5. The benefit that Y can be expected to gain outweighs any harms, costs, or burdens that X is likely to
incur.
Although it is difficult to state the precise meaning of “significant risks, costs, or burdens” in the fourth
condition, reasonable thresholds can be set, and this condition, like the other four, is essential to render the
action obligatory on grounds of beneficence (by contrast to a nonobligatory act of beneficence).
We can now investigate the merit of these five conditions of obligatory beneficence by using three test cases.
The first is a borderline case of specific obligatory beneficence, involving rescue, whereas the second presents a
clear-cut case of specific obligatory beneficence. The third, a hypothetical case, directs our attention to
obligations of beneficence when it is possible to help only some members of a group at risk in an epidemic.
After addressing these cases, we consider the possibility of a duty to rescue in the context of research.
In the first case, which we introduced in Chapter 5 (pp. 157–58), Robert McFall was diagnosed as having
aplastic anemia, which is often fatal, but his physician believed that a bone marrow transplant from a genetically
compatible donor could increase his chances of surviving. David Shimp, McFall’s cousin, was the only relative
willing to undergo the first test, which established tissue compatibility. Shimp then unexpectedly refused to
undergo the second test for genetic compatibility. When McFall sued to force his cousin to undergo the second
test and to donate bone marrow if he turned out to be compatible, the judge ruled that the law did not allow him
to force Shimp to engage in such acts of positive beneficence. However, the judge also stated his view that
Shimp’s refusal was “morally indefensible.”
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The judge’s moral assessment is questionable because it is unclear that Shimp shirked an obligation. Conditions
1 and 2 listed previously were met for an obligation of specific beneficence in this case, but condition 3 was not
satisfied. McFall’s chance of surviving one year (at the time) would have increased only from 25% to between
40% and 60%. These contingencies make it difficult to determine whether a principle of beneficence can be
validly specified so that it demands a particular course of action in this case. Although most medical
commentators agreed that the risks to the donor were minimal in this case, Shimp was concerned about
condition 4. Bone marrow transplants, he was told, require 100 to 150 punctures of the pelvic bone. These
punctures can be painlessly performed under anesthesia, and the major risk at the time was a 1 in 10,000 chance
of death from anesthesia. Shimp, however, believed that the risks were greater (“What if I become a cripple?” he
asked) and that they outweighed the probability and magnitude of benefit to McFall. This case, all things
considered, seems to be a borderline case of obligatory beneficence.
In the Tarasoff case, discussed in Chapter 1 (pp. 10–11), a therapist, on learning of his patient’s intention to kill
an identified woman, notified the police but did not warn the intended victim because of constraints of
confidentiality. Suppose we modify the actual circumstances in the Tarasoff case to create the following
hypothetical situation: A psychiatrist informs all of his patients that he may not keep information confidential if
serious threats to other persons are disclosed by the patient. The patient agrees to treatment under these
conditions and subsequently reveals an unmistakable intention to kill an identified woman. The psychiatrist may
now either remain aloof and maintain confidentiality or take measures to protect the woman by notifying her or
the police, or both. What does morality—and specifically beneficence—demand of the psychiatrist in this case?
Only a remarkably narrow account of moral obligation would assert that the psychiatrist is under no obligation
to protect the woman by contacting her or the police or both. The psychiatrist is not at significant risk and will
suffer virtually no inconvenience or interference with his life plans. If morality does not demand this much
beneficence, it is difficult to see how morality imposes any positive obligations at all. Even if a competing
obligation exists, such as protection of confidentiality, requirements of beneficence will, in the hypothetical case
we have constructed, override the obligation of confidentiality. In similar situations, health care professionals
may have an overriding moral obligation to warn spouses or lovers of HIV-infected patients who refuse to
disclose their status to their partners and who refuse to engage in safer sex practices.
What is the morally relevant difference between these rescue cases involving individuals and those discussed in
the previous section? We there suggested that rescuing a drowning person involves a specific obligation not
present with global poverty, because the rescuer is “well-placed at that moment to help the victim.” However,
many of us are well placed to help people in poverty by giving modest sums of money. We can do so at little risk
to ourselves and with some chance of limited benefit to others. One response is that in the drowning case there is
a specific individual toward whom we have an obligation, whereas in the poverty cases we have obligations
toward entire populations of people, only a few of whom we can possibly hope to help through a gift.
It is tempting to suppose that we are obligated to act only when we can help specific, identifiable individuals, not
when we can help only some of the members of a larger group. However, this line of argument has implausible
implications, particularly when the size of groups is smaller in scale. Consider a situation in which an epidemic
breaks out in a reasonably small community, calling for immediate quarantine, and hundreds of persons who are
not infected cannot return to their homes if infected persons are in the home. They are also not allowed to leave
the city limits, and all hotel rooms are filled. Authorities project that you could prevent the deaths of
approximately twenty noninfected persons by offering them portable beds (supplied by the city) in your house.
Conditions would become unsanitary if more than twenty persons were housed in one home, but there are
enough homes to house every stranded person if each house in the community takes twenty persons. It seems
implausible to say that no person is morally obligated to open his or her house to these people for the weeks
needed to control the epidemic, even though no one person has a specific obligation to any one of the stranded
individuals. The hypothesis might be offered that this obligation arises only because they are all members of the
community, but this hypothesis is implausible because it would arbitrarily exclude visitors who were stranded.
It is doubtful that ethical theory and practical deliberation can establish precise, determinate limits on the scope
of obligations of beneficence. Attempts to do so will involve setting a revisionary line in the sense that they will
draw a sharper boundary for our obligations than the common morality recognizes. Although the limits of
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beneficence are certainly not precise, we have argued in this section that we can still appropriately fix or specify
obligations of beneficence in some situations.
We will now connect these conclusions about the duty to rescue to a difficult ethical problem in policies and
programs in research.
Expanded Access and Continued Access in Research
An excellent test for our analysis of obligations of beneficence and the duty of rescue is found in programs and
policies of expanded access and continued access to investigational (experimental) products such as drugs and
medical devices.
Expanded access to investigational products. In the absence of effective ways to treat serious medical
conditions, many patients and their families are keenly interested in gaining access to promising drugs or devices
that are in clinical trials but have not yet been approved. Societal perceptions of clinical research have shifted
significantly over the last few decades. Beginning in the 1980s, especially as a result of the efforts of AIDs
activists, increasing access to clinical trials became a major goal.9 But not everyone with a particular medical
condition meets the criteria for eligibility to participate in a clinical trial on treatments for their condition. In the
United States, the Food and Drug Administration (FDA) undertook several initiatives to expedite the process of
making new drugs available to treat serious conditions that lack effective alternative treatments. These initiatives
use designations such as “fast track,” “breakthrough therapy,” “accelerated approval,” and “priority review.”10
The main moral question is whether it is sometimes either morally acceptable or morally obligatory to provide
an investigational product to seriously ill patients such as persons with life-threatening conditions who cannot
enroll in a clinical trial and who cannot wait until a promising product receives approval. Policies that do so are
commonly called either “expanded access” or “compassionate use” programs. The two terms are not
synonymous, but they both identify the same type of program, namely, one that authorizes access to an
investigational product that does not yet have regulatory approval but that has passed basic safety tests (Phase I)
and remains within the approval process.11
In a positive response to complaints that its program of “expanded access” is too cumbersome and too slow, the
FDA has streamlined its procedures for application and access. Complaints and related concerns led to the
passage of a federal “right to try” law in 2018 (similar to several state laws).12 This legislation, which provides
an option beyond a clinical trial or the FDA’s explicit “expanded access” program, is expected to increase the
number of terminally ill patients who are able to access investigational treatments. However, critics charge that
this legislation often creates false hopes and threatens to delay or undermine the process of clinical research
needed to determine both the safety and efficacy of investigational treatments. Some critics also charge that this
legislation is part of a broader effort to subvert government regulation of the pharmaceutical industry.13
The primary goal of clinical research is scientific understanding that can lead to sound clinical interventions.
Research is generally aimed at ensuring that potential treatments are safe and efficacious, not at immediately
providing treatments. Research on new products therefore does not carry clinical obligations of health care, and
clinical investigators and research sponsors are not morally obligated to provide access to an investigational
product outside of a clinical trial. Sometimes, however, the following circumstances occur: A program of
expanded access, based on available data, is reasonably safe and could possibly benefit some patients; no
alternative therapies are available; and therapeutic use of the product does not threaten the scheduled completion
or the results of a clinical trial. In these cases, it is morally permissible to adopt a program of expanded access,
and in some cases investigational treatments have worked for patients enrolled in these programs. The use of the
drug AZT in the treatment of AIDS is a classic case in which compassionate use would have been justified had
there been an adequate supply of the drug available at the time. (See our discussion of this case in Chapter 8, pp.
366–67.)
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Part of the reason for the virtue-grounded language of “compassionate use” is that though it is clearly
compassionate and justified to provide some investigational products for therapeutic use, it is generally not
obligatory to do so. In some cases, it is even obligatory not to provide access either because the risks are too
high for patients or because access might seriously endanger clinical trial goals. Most investigational products
do not survive clinical trials to achieve regulatory approval, and many turn out to have harmful side effects. If it
is justified to proceed with a “compassionate use” program, the justification will likely appeal to a moral ideal,
as analyzed in Chapter 2, rather than a moral obligation. It would be obligatory to undertake an expanded access
program only if the situation conformed to all five conditions in the analysis of a duty of rescue that we
discussed in the previous section.
In the normal course of investigational products, the prospect that all five conditions will be satisfied in any
given new case is unlikely. In most potential compassionate use programs, condition 3 (will probably prevent a
loss), condition 4 (will not present significant risks, costs, or burdens), or condition 5 (potential benefit can be
expected to outweigh harms, costs, or burdens likely to be incurred) will not be satisfied. Often predictions and
hopes about innovative treatments are not met. An apt illustration comes from the experimental treatment of
breast cancer with high-dose chemotherapy followed by bone marrow transplantation. Perceptible initial
improvement using aggressive applications in early-phase trials led to requests for expanded access from many
patients. Approximately 40,000 women were given expanded access to this investigational approach—despite
weak evidence of efficacy—and only 1,000 women participated in the independent clinical trial. The completed
clinical trial established that this investigational strategy provided no benefits over standard therapies and
actually elevated the risk of mortality. In short, this expanded access program increased risks for thousands of
patients without additional benefits.14
Condition 3 can involve notably complicated decision making. However, we can easily imagine an extraordinary
circumstance, such as a public health emergency, in which all of these conditions are satisfied and create an
ethical obligation, not merely a moral ideal, of rescue through expanded access. The unusual case of the antiviral
drug ganciclovir represents an interesting clinical situation of compassionate use because it satisfies all five
conditions of the duty of rescue independently of a clinical trial and yet only questionably created an obligation
on the part of the pharmaceutical company to provide the product. Ganciclovir had been shown to work in the
laboratory against a previously untreatable viral infection, but a clinical trial was still years away. Authorization
was given for first use of the drug in a few emergency compassionate use cases. The drug was demonstrated to
be efficacious by evidence of a different nature than the information collected in a clinical trial. For example,
retinal photographs showed changes in eye infections after treatment.15 Although the provision of ganciclovir in
this compassionate use program was controversial from the beginning, the program in retrospect clearly was
justified, even though it cannot be said to have been morally obligatory when initiated. Syntex, the
pharmaceutical company that developed the drug, created what would become a five-year expanded access
program. The company was trapped into continuing the program, which it had planned to be only short term,
because the US FDA would not approve ganciclovir in the absence of a scientific trial.
In sum, expanding patients’ access to investigational products can sometimes be permissible beneficence, and it
can occasionally be obligatory beneficence (when our listed conditions are met). By contrast, continued access
to investigational products, a related but notably different practice, is more likely to be an obligation of specific
beneficence, as we will now see.
Continued access to investigational products. The moral problem of continued access is how to identify the
conditions under which it is morally obligatory, after a clinical trial has ended, to continue to provide an
investigational product to research subjects who favorably responded to the product during the trial. Continued
access may occur in several ways. The former subjects in the trial might continue as subjects in an extension of
the trial on the same product or they might simply be given the product by the research sponsor. When subjects
have responded favorably to an investigational product during the course of a trial and their welfare interests will
be set back if the effective intervention is no longer available to them, two moral considerations distinguish this
situation from that of expanded access. First, our analysis of the principle of nonmaleficence in Chapter 5
suggests that sponsors and investigators would be causing harm to research subjects by denying them further
access to a product that is helping them address serious health problems or avoid death. Second, obligations of
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reciprocity (a moral notion treated in the next section in the present chapter) suggest that research subjects are
owed access to an apparently successful treatment at the end of their service in a clinical trial because they
undertook risks to help produce knowledge about that product to help patients, which is also knowledge that
advances science and benefits sponsors and investigators involved in the research.
These two moral considerations differentiate continued access from expanded access. They warrant the
conclusion that there can be—and we think frequently are—moral obligations to provide continued access to
investigational products for former research subjects. These obligations are independent of those created by our
five-condition analysis of the duty of rescue. Although most of these five conditions are satisfied in many cases
of continued access, condition 3 (will probably prevent loss or damage) often is not satisfied. Our view is that
even if condition 3 is not satisfied, there still can be sufficient moral grounds to create an obligation to provide a
continued access program because of demands of reciprocity and nonmaleficence. These moral grounds apply
when there is good evidence that the research subject is currently benefiting even if there is inconclusive
evidence that he or she will benefit in the long run.
Unlike the ordinary expanded access situation, it is unethical to withdraw an effective investigational product
from a research subject who has a serious disorder or faces a significant risk of death and who has responded
favorably to the investigational product. Sponsors and investigators should make conscientious efforts before a
trial begins to ensure that a program of continued access is in place for all subjects for whom an investigational
product proves effective. They also have obligations to state the conditions of continued access in the research
protocol and to inform all potential subjects as part of the consent process what will happen if they respond
favorably to the investigational products. Disclosures should be made regarding both the nature and duration of
the continued access program, as well as the source of financing. If a protocol and consent form lack such
information, the review committee should require investigators to justify the omission.16
However, these conclusions need a proviso. In some cases, a product under study may be in such an early stage
of development that information about efficacy and safety is inadequate to assess risk and potential benefits. In
other cases it may be unclear whether subjects have genuinely responded favorably to interventions. Under these
conditions, continued access programs may not be obligatory for some early-stage studies. In some difficult
cases the provision of an investigational drug that has been shown to be seriously unsafe for most patients—that
is, to carry an unreasonably high level of risk—can justifiably be discontinued altogether, even if some patients
have responded favorably. However, because risk and safety indexes vary significantly in subjects, what is
unsafe for one group of patients may not be unduly risky for another group. A high level of risk in general
therefore may not be a sufficient reason to discontinue availability to particular subjects who have responded
favorably.
A Reciprocity-Based Justification of Obligations of Beneficence
Obligations of general and specific beneficence can be justified in several ways. In addition to our observations
about obligations of specific beneficence based on special moral relations and roles and about the duty of rescue
in particular circumstances, another justification is based on reciprocity. This approach is well suited to some
areas of biomedical ethics, as we saw earlier in the discussion of expanded access. David Hume argued that the
obligation to benefit others in society arises from social interactions: “All our obligations to do good to society
seem to imply something reciprocal. I receive the benefits of society, and therefore ought to promote its
interests.”17 Reciprocity is the act or practice of making an appropriate, often proportional, return—for example,
returning benefit with proportional benefit, countering harm-causing activities with proportional criminal
sentencing, and reciprocating friendly and generous actions with gratitude. Hume’s reciprocity account rightly
maintains that we incur obligations to help or benefit others, in part because we have received, will receive, or
stand to receive beneficial assistance from them.
Reciprocity pervades social life. It is implausible to maintain that we are largely free of, or can free ourselves
from, indebtedness to our parents, researchers in medicine and public health, and teachers. The claim that we
make our way independent of our benefactors is as unrealistic as the idea that we can always act autonomously
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without affecting others.18 Codes of medical ethics have sometimes inappropriately viewed physicians as
independent, self-sufficient philanthropists whose beneficence is analogous to generous acts of giving. The
Hippocratic Oath states that physicians’ obligations to patients represent philanthropic service, whereas
obligations to their teachers represent debts incurred in the course of becoming physicians. Today many
physicians and health care professionals owe a large debt to society for their formal education, training in
hospitals, and the like. Many are also indebted to their patients, past and present, for learning gained from both
research and practice. Because of this indebtedness, the medical profession’s role of beneficent care of patients
is misconstrued if modeled on philanthropy, altruism, and personal commitment. This care is rooted in a moral
reciprocity of the interface of receiving and giving in return.19
A compelling instance of reciprocity, and one with a promising future in medicine, occurs in what the US
National Academy of Medicine (NAM) calls “a learning healthcare system.” A NAM report defines this type of
system as “one in which knowledge generation is so embedded into the core of the practice of medicine that it is
a natural outgrowth and product of the healthcare delivery process and leads to continual improvement in
care.”20 A true learning health system is structured so that professionals have obligations of care to patients, and
patients have specific obligations of reciprocity to facilitate learning in the health system so that care for all
patients can be improved. In this institutional structure—which seems destined in the near future to increasingly
become an integral part of the design of health care institutions all over the world—patients are on the receiving
end of informational benefits in which the quality of their health care depends on a rapid and regular flow of
information received from other patients and from other health care systems. Obligations of reciprocity call for
all patients to supply information by participating in the same sort of learning activities and burdens that others
have shouldered in the past to benefit them. Under these conditions, research and practice are merged in a
constantly updated environment of learning designed to benefit everyone involved in the institution.
A reciprocity-based approach to beneficence has also emerged as a possible way to overcome the chronic
shortage of deceased donor organs for transplantation. Appeals to obligatory or ideal beneficence to strangers
have fallen far short of generating the number of organs needed to save the lives and enhance the quality of lives
of patients with end-stage organ failure, many of whom die while awaiting a transplant. A reciprocity-based
system would give preferential access to patients in need who previously agreed, perhaps years earlier, to donate
their organs after their deaths. Declared donors’ immediate family members would also be included in some
proposals. In 2012, Israel became the first country to implement a reciprocity-based system.
Two models have been proposed for such programs: (1) a model of pure reciprocity restricts the pool of potential
organ recipients to declared donors; (2) a model of preferential access or preferred status gives declared donors
additional points toward access in an allocation point system. Both models encounter difficult questions of
fairness to persons in need who were not eligible to declare their status as donors because of age or disqualifying
medical conditions, but the second, nonexclusionary, preferred-status model, which Israel adopted, can handle
these questions more easily. However, other justice-based moral concerns focus on how a policy might
disadvantage those who are uninformed about organ donation and on how much weight should be given to the
standard of declared donor status and how much to the standard of medical need.21
PATERNALISM: CONFLICTS BETWEEN BENEFICENCE AND RESPECT
FOR AUTONOMY
The thesis that beneficence expresses a primary obligation in health care is ancient. A venerable expression
appears in the Hippocratic work Epidemics: “As to disease, make a habit of two things—to help, or at least to do
no harm.”22 Traditionally, physicians relied almost exclusively on their own judgments about their patients’
needs for information and treatment. However, medicine in the modern world has increasingly encountered
claims of patients’ rights to receive information and to make independent judgments. As assertions of autonomy
rights increased, moral problems of paternalism became clearer and more prominent.
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Whether respect for the autonomy of patients should have priority over beneficence directed at those patients,
that is, paternalistic beneficence, remains a central problem in clinical ethics. We will now begin to work on this
problem by considering key conceptual issues.
The Nature of Paternalism
In recent biomedical ethics, paternalism has been both defended and attacked when addressing problems in
clinical medicine, public health, health policy, and government policy. It is unclear in much of this literature
what writers think paternalism is. The reason, we suggest, is that the notion of paternalism is a complicated and
inherently contestable concept. The Oxford English Dictionary (OED) dates the term paternalism to the 1880s,
giving its root meaning as “the principle and practice of paternal administration; government as by a father; the
claim or attempt to supply the needs or to regulate the life of a nation or community in the same way a father
does those of his children.” This definition relies on an analogy with the father and presupposes two features of
the paternal role: that the father acts beneficently (i.e., in accordance with his conception of his children’s
welfare interests) and that he makes all or at least some of the decisions relating to his children’s welfare, rather
than letting them make the decisions. In health care relationships, the analogy is that a professional has superior
training, knowledge, and insight and is thus in an authoritative position to determine the patient’s best interests.
Examples of paternalism in medicine include the provision of blood transfusions when patients have refused
them, involuntary commitment to institutions for treatment, intervention to stop suicides, resuscitation of
patients who have asked not to be resuscitated, withholding of medical information that patients have requested,
denial of an innovative therapy to someone who wishes to try it, and some governmental efforts to promote
health.
Paternalistic acts sometimes use forms of influence such as deception, lying, manipulation of information,
nondisclosure of information, or coercion, but they may also simply involve a refusal to carry out another’s
wishes. According to some definitions in the literature, paternalistic actions restrict only autonomous choices;
hence, restricting nonautonomous conduct for beneficent reasons is not paternalistic. Although one author of this
book prefers this autonomy-restricted conception,23 we here accept and refine the broader definition suggested
by the OED: Paternalism involves an intentional nonacquiescence or intervention in another person’s
preferences, desires, or actions with the intention of either preventing or reducing harm to or benefiting that
person. Even if a person’s desires, intentional actions, and the like are not substantially autonomous, overriding
them can be paternalistic under this definition.24 For example, if a man ignorant of his fragile, life-threatening
condition and sick with a raging fever attempts to leave a hospital, it is paternalistic to detain him, even if his
attempt to leave does not derive from a substantially autonomous choice.
Accordingly, we define “paternalism” as “the intentional overriding of one person’s preferences or actions by
another person, where the person who overrides justifies the action by appeal to the goal of benefiting or of
preventing or mitigating harm to the person whose preferences or actions are overridden.” This definition is
normatively neutral because it does not presume that paternalism is either justified or unjustified. Although the
definition assumes an act of beneficence analogous to parental beneficence, it does not prejudge whether the
beneficent act is justified, obligatory, misplaced, or wrong.
Problems of Medical Paternalism
Throughout the history of medical ethics, the principles of nonmaleficence and beneficence have both been
invoked as a basis for paternalistic actions. For example, physicians have traditionally held that disclosing
certain kinds of information can cause harm to patients under their care and that medical ethics obligates them
not to cause such harm. Here is a typical case: A man brings his father, who is in his late sixties, to his physician
because he suspects that his father’s problems in interpreting and responding to daily events may indicate
Alzheimer’s disease. The man also makes an “impassioned plea” that the physician not tell his father if the tests
suggest Alzheimer’s. Tests subsequently indicate that the father probably does have this disease, which is a
progressive brain disorder that gradually destroys memory, thinking, and abilities to carry out even simple tasks.
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The physician now faces a dilemma, because of the conflict between demands of respect for autonomy,
assuming that the father still has substantial autonomy and is competent at least some of the time, and demands
of beneficence. The physician first considers the now recognized obligation to inform patients of a diagnosis of
cancer. This obligation typically presupposes accuracy in the diagnosis, a relatively clear course of the disease,
and a competent patient—none of which is clearly present in this case. The physician also notes that disclosure
of Alzheimer’s disease sometimes adversely affects patients’ coping mechanisms, which could harm the patient,
particularly by causing further decline, depression, agitation, and paranoia.25 (See also our discussion of veracity
in Chapter 8, pp. 328–34.)
Other patients—for example, those depressed or addicted to potentially harmful drugs—are unlikely to reach
adequately reasoned decisions. Still other patients who are competent and deliberative may make poor choices,
as judged by their physicians. When patients of either type choose harmful courses of action, some health care
professionals respect autonomy by not interfering beyond attempts at persuasion, whereas others act
beneficently by attempting to protect patients against the potentially harmful consequences of their own stated
preferences and actions. Discussions of medical paternalism focus on how to specify or balance these principles,
which principle to follow under which conditions, and how to intervene in the decisions and affairs of such
patients when intervention is warranted.
Soft and Hard Paternalism
A crucial distinction exists between soft and hard paternalism.26 In soft paternalism, an agent intervenes in the
life of another person on grounds of beneficence or nonmaleficence with the goal of preventing substantially
nonvoluntary conduct. Substantially nonvoluntary actions include poorly informed consent or refusal, severe
depression that precludes rational deliberation, and addiction that prevents free choice and action. Hard
paternalism, by contrast, involves interventions intended to prevent or mitigate harm to, or to benefit, a person,
even though the person’s risky choices and actions are informed, voluntary, and autonomous.
Hard paternalism usurps autonomy by either restricting the information available to a person or overriding the
person’s informed and voluntary choices. For example, it is an act of hard paternalism to refuse to release a
competent hospital patient who will probably die outside the hospital but who requests the release in full
awareness of the probable consequences. It is also an act of hard paternalism to prevent a patient capable of
making reasoned judgments from receiving diagnostic information if the information would lead the patient to a
state of depression. For the interventions to qualify as hard paternalism, the intended beneficiary’s choices need
not be fully informed or voluntary, but they must be substantially autonomous.
Soft paternalistic actions are sometimes morally complicated because of the difficulty of determining whether a
person’s actions are substantially nonautonomous and of determining appropriate means of protection. That we
should protect persons from harm caused to them by conditions beyond their control is not controversial. Soft
paternalism therefore does not involve a deep conflict between the principles of respect for autonomy and
beneficence. Soft paternalism only tries to prevent the harmful consequences of a patient’s actions that the
patient did not choose with substantial autonomy.
This conclusion is not inconsistent with our earlier definition of paternalism as involving an intentional
overriding of one person’s known preferences or actions by another person. The critical matter is that some
behaviors that express preferences are not autonomous. For example, some patients on medication or recovering
from surgery insist that they do not want a certain physician to touch or examine them. They may be
experiencing temporary hallucinations around the time of the statement. A day later they may have no idea why
they stated this preference. A person’s preferences can be motivated by many states and desires.
Paternalistic policies. Debates about paternalism have emerged in health policy as well as clinical ethics. Often
health policies—for example, requiring a doctor’s prescription for a person to acquire a type of medical device
—have the goal of avoiding a harm or providing a benefit in a population in which most affected parties are not
consulted about whether they agree with the policy. Policymakers understand that some percentage of the
population would oppose the policy on grounds that it is autonomy depriving (by not giving them a choice),
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whereas others would support the policy. In effect, the policy is intended to benefit all members of a population
without consulting the autonomous preferences of all individuals, and with the knowledge that some individuals
would reject the control that the policy exerts over their lives.
So-called neopaternalists or libertarian paternalists, principally coauthors Cass Sunstein and Richard Thaler,
have argued for government and private institutional policies intended to protect or benefit individuals through
shaping, steering, or nudging their choices in a manner that falls short of disallowing or coercing those
choices.27 In clinical care, similar arguments have supported the physician’s manipulation of some patients to
get them to select proper goals of care.28 Some soft paternalists recommend policies and actions that pursue
values that an intended beneficiary already, at least implicitly, holds but cannot realize because of limited
capacities or limited self-control.29 The individual’s own stated preferences, choices, and actions are deemed
unreasonable in light of other standards the person accepts.
By contrast, in hard paternalism the intended beneficiary does not accept the values paternalists use to determine
his or her own best interests. Hard paternalism requires that the benefactor’s conception of best interests prevail,
and it may ban, prescribe, or regulate conduct in ways that manipulate individuals’ actions to secure the
benefactor’s intended result. Soft paternalism, by contrast, reflects the beneficiary’s conception of his or her best
interests, even if the beneficiary fails to adequately understand or recognize those interests or to fully pursue
them because of inadequate voluntariness, commitment, or self-control.
This conception of soft paternalism faces difficulties. Our knowledge of what an informed and competent person
chooses to do is generally the best evidence we have of what his or her values are. For example, if a deeply
religious man fails to follow the dietary restrictions of his religion, although, in the abstract, he is strongly
committed to all aspects of the religion, his departures from dietary laws may be the best evidence we have of
his true values on the particular matter of dietary restrictions. Because it seems correct—short of
counterevidence in particular cases—that competent informed choice is the best evidence of a person’s values, a
justified paternalism must have adequate evidence that this assumption is misguided in a particular case.
Some prominent proponents of soft paternalism reach the conclusion that it is compatible with, rather than
contrary to, autonomous choice. Sunstein and Thaler maintain that even though the idea of “libertarian
paternalism” might appear to be an oxymoron, “it is both possible and desirable for private and public
institutions to influence behavior while also respecting freedom of choice.”30 “Libertarian paternalism” is
indeed counterintuitive, but some sense can be made of it. Suppose that available evidence were to establish that
smokers psychologically discount the risks of smoking because of an “optimism bias” (among other factors). It
does not follow that a government would violate their autonomy through programs intended to correct their
biases—for example, through television advertisements that graphically present the suffering that often results
from smoking.31
Libertarian paternalism builds on evidence from the cognitive sciences indicating that people have limited
rationality or limited self-control that reduces their capacity to choose and act autonomously. A critical
assumption is that all autonomous persons would value health over the ill health caused by smoking, and in this
sense a person’s deepest autonomous commitment is to be a nonsmoker. The thesis is that we are justified on
autonomy grounds in arranging their choice situation in a way that likely will correct their cognitive biases and
bounded rationality. However, if this position in effect holds that we should use our knowledge of cognitive
biases not only to correct for failures of rationality but also to manipulate substantially autonomous people into
doing what is good for them, then this position is hard paternalism. In short, depending on the nature of the
manipulation and the nature of the affected choices, the account could turn out to be either a hard or a soft
paternalism.
There is good reason for caution about libertarian paternalism.32 The theory’s supposed advantage may actually
be an ethical disadvantage. This paternalism relies heavily on the thesis that there are many values that
individuals would recognize or realize themselves if they did not encounter internal limits of rationality and
control. The means employed, whether by health care professionals, private institutions, or governments, shape
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and steer persons without thwarting their free choice. These prima facie appealing paternalistic policies and
practices may face little opposition and be implemented without the transparency and publicity essential for
public assessment. Paternalistic governmental policies or health care practices are susceptible to abuse if they
lack transparency, public visibility, and vigorous public scrutiny.
Social norms and stigmatization. Soft paternalistic policies sometimes stigmatize conduct such as smoking.
While stigmatization can change bad behavior in some contexts, it often has psychosocial costs. Proponents
insist that they target acts, not persons. However, in practice, stigmatizing conduct may slide into stigmatizing
people who engage in that conduct. For example, antismoking measures such as prohibitive “sin taxes” levied on
cigarettes often have paternalistic goals of forcing changes in unhealthy behavior. Nevertheless, they sometimes
slide from stigmatization of acts (smoking) to stigmatization of people (smokers), leading to hostility and
antipathy directed at population subgroups.33 Because smoking is now more common among lower
socioeconomic groups in some countries, stigmatization thus affects socially vulnerable members of society and
may involve discrimination—a matter of moral concern from the standpoint of both beneficence and justice.34
Soft paternalistic interventions may promote social values that eventually pave the way for hard paternalistic
interventions. The history of the campaign against cigarette smoking is again instructive. It moved from
disclosure of information, to sharp warnings, to soft paternalistic measures to reduce addiction-controlled
unhealthy behavior, to harder paternalistic measures such as significantly increasing taxes on cigarettes.35 In this
example, paternalistic interventions remain beneficent, but they increasingly lose touch with and may even
violate the principle of respect for autonomy.
The Justification of Paternalism and Antipaternalism
Three general positions appear in literature on the justification of paternalism: (1) antipaternalism, (2)
paternalism that appeals to the principle of respect for autonomy as expressed through some form of consent,
and (3) paternalism that appeals to the principle of beneficence. All three positions agree that some acts of soft
paternalism are justified, such as preventing a man under the influence of a hallucinogenic drug from killing
himself. Antipaternalists do not object to such interventions because substantially autonomous actions are not at
stake.
Antipaternalism. Antipaternalists oppose hard paternalistic interventions for several reasons. One motivating
concern focuses on the potential adverse consequences of giving paternalistic authority to the state or to a group
such as physicians. Antipaternalists regard rightful authority as residing in the individual. The argument for this
position rests on the principle of respect for autonomy as discussed in Chapter 4 (pp. 99–106): Hard paternalistic
interventions display disrespect toward autonomous agents and fail to treat them as moral equals, treating them
instead as less-than-independent determiners of their own good. If others impose their conception of the good on
us, they deny us the respect they owe us, even if they have a better conception of our needs than we do.36
Antipaternalists also hold that paternalistic standards are too broad and authorize and institutionalize too much
intervention when made the basis of policies. If this charge is correct, paternalism allows an unacceptable
latitude of judgment. Consider the example of a sixty-five-year-old man who has donated a kidney to one of his
sons and now volunteers to donate his second kidney when another son needs a transplant, an act most would
think not in his best interests even though he contends that he could survive on dialysis. Are we to commend
him, ignore him, or deny his request? Hard paternalism suggests that it would be permissible and perhaps
obligatory to stop him or at least to refuse to carry out his request, a judgment that could easily be made a matter
of institutional or public policy. If so, antipaternalists argue, the state or an institution is permitted, in principle,
to prevent its morally heroic citizens from acting in a manner “harmful” to themselves.
However, some interventions that are paternalistic (in our broad understanding of paternalism) can be accepted
by antipaternalists. A medical example with an extensive antipaternalistic literature is the involuntary
hospitalization of persons who have neither been harmed by others nor actually harmed themselves, but who
have been assessed as at risk of such harm because of a documented disorder that substantially compromises
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their autonomous choices. In this case, a double paternalism is common—a paternalistic justification for both
commitment and forced therapy. Antipaternalists could regard this kind of intervention as justified by the intent
to benefit, emphasizing that beneficence does not here conflict with respect for autonomy because the intended
beneficiary lacks substantial autonomy.
Paternalism justified by consent. Some appeal to consent to justify paternalistic interventions—be it rational
consent, subsequent consent, hypothetical consent, or some other type of consent. As Gerald Dworkin states it,
“The basic notion of consent is important and seems to me the only acceptable way to try to delimit an area of
justified paternalism.” Paternalism, he maintains, is a “social insurance policy” to which fully rational persons
would subscribe in order to protect themselves.37 They would know, for example, that they might be tempted at
times to make decisions that are far-reaching, potentially dangerous, and irreversible. At other times, they might
suffer irresistible psychological or social pressures to take actions that are unreasonably risky. In still other cases,
persons might not sufficiently understand the dangers of their actions, such as medical facts about the effects of
smoking, although they might believe that they have a sufficient understanding. Those who use consent as a
justification conclude that, as fully rational persons, we would consent to a limited authorization for others to
control our actions if our autonomy becomes defective or we are unable to make the prudent decision that we
otherwise would make.38
A theory that appeals to rational consent to justify paternalistic interventions has attractive features, particularly
its attempt to harmonize principles of beneficence and respect for autonomy. However, this approach does not
incorporate an individual’s actual consent and is therefore not truly consent based. It is best to keep autonomy-
based justifications at arm’s length from both paternalism and hypothetical, rational-persons arguments.
Beneficence alone justifies truly paternalistic actions, exactly as it justifies parental actions that override
children’s preferences.39 Children are controlled not because we believe they will subsequently consent to or
rationally approve our interventions. We control them because we believe they will have better, or at least less
dangerous, lives.
Paternalism justified by prospective benefit. Accordingly, the justification of paternalistic actions that we
recommend places benefit on a scale with autonomy interests and balances both: As a person’s interests in
autonomy increase and the benefits for that person decrease, the justification of paternalistic action becomes less
plausible; conversely, as the benefits for a person increase and that person’s autonomy interests decrease, the
justification of paternalistic action becomes more plausible. Preventing minor harms or providing minor benefits
while deeply disrespecting autonomy lacks plausible justification, but actions that prevent major harms or
provide major benefits while negatively affecting (or “disrespecting”) autonomy in only minor ways have a
plausible paternalistic rationale. As we will now argue, even hard paternalistic actions can under some
conditions be justified on these grounds.40
Justified hard paternalism. An illustrative (and actual) case provides a good starting point for reflection on the
conditions of justified hard paternalism: A physician obtains the results of a myelogram (a graph of the spinal
region) following examination of a patient. The test yields inconclusive results and needs to be repeated, but it
also suggests a serious pathology. When the patient asks about the test results, the physician decides on grounds
of beneficence to withhold potentially negative information, knowing that, on disclosure, the patient will be
distressed and anxious. Based on her experience with other patients and her ten-year knowledge of this particular
patient, the physician is confident that the information would not affect the patient’s decision to consent to
another myelogram. Her sole motivation in withholding the information is to spare the patient the emotional
distress of processing negative but not fully confirmed information, which, at this time, seems premature and
unnecessary. However, the physician intends to be completely truthful with the patient about the results of the
second test and intends to disclose the information well before the patient would need to decide about surgery.
This physician’s act of temporary nondisclosure is morally justified because she has determined that beneficence
has temporary priority over respect for autonomy.41 Such minor hard paternalistic actions are common in
medical practice and in our view are sometimes warranted.
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To consolidate the discussion thus far, hard paternalism involving a health professional’s intervention is justified
only if the following conditions are satisfied (see further our conditions for constrained balancing in Chapter 1,
pp. 22–24):
1. 1. A patient is at risk of a significant, preventable harm or failure to receive a benefit.
2. 2. The paternalistic action will probably prevent the harm or secure the benefit.
3. 3. The intervention to prevent harm to or to secure a benefit for the patient probably outweighs the risks to
the patient of the action taken.
4. 4. There is no morally better alternative to the limitation of autonomy that will occur.
5. 5. The least autonomy-restrictive alternative that will prevent the harm or secure the benefit is adopted.
A sixth condition could be added requiring that a paternalistic action not damage substantial autonomy interests,
as would occur if one were to override the decision of a Jehovah’s Witness patient who, from deep conviction,
refuses a blood transfusion. To intervene forcefully by providing the transfusion would substantially infringe the
patient’s autonomy and could not be justified under this additional condition. However, some cases of justified
hard paternalism do cross the line of minimal infringement. In general, as the risk to a patient’s welfare increases
or the likelihood of an irreversible harm increases, the likelihood of a justified paternalistic intervention
correspondingly increases.
The following case plausibly supports a hard paternalistic intervention despite the fact that it involves more than
minimal infringement of respect for autonomy: A psychiatrist is treating a patient who is sane but who acts in
what appear to be bizarre ways. He is acting conscientiously on his unique religious views. He asks a
psychiatrist a question about his condition, a question that has a definite answer but which, if answered, would
lead the patient to engage in seriously self-maiming behavior such as plucking out his right eye to fulfill what he
believes to be his religion’s demands. Here the doctor acts paternalistically, and justifiably, by concealing
information from this patient, who is rational and otherwise informed. Because the infringement of the principle
of respect for autonomy is more than minimal in this case (the stated religious views being central to this
patient’s life plan), a sixth condition requiring no substantial infringement of autonomy is not a necessary
condition of all cases of justified hard paternalism.
Problems of Suicide Intervention
The tenth leading cause of death in the United States as this book goes to press is suicide. In 2016, nearly 45,000
persons committed suicide, an increase of roughly 30% since 1999. Data available from about half of the US
states indicate that over 50% of persons committing suicide were not known to have mental health problems.42
These striking figures suggest that improvements in beneficence-based suicide prevention programs have not
been as effective as planners of these programs anticipated.
We will focus on suicide intervention, that is, interventions with the intent to prevent suicides. The state,
religious institutions, and health care professionals have traditionally asserted jurisdiction to intervene in suicide
attempts. Those who intervene do not always justify their actions on paternalistic grounds, but paternalism has
been a common justification.
However, several conceptual questions about the term suicide make it difficult to categorize some acts as
suicides.43 A classic example of these difficulties involves Barney Clark, who became the first human to receive
an artificial heart. He was given a key to use to turn off the compressor if he decided he wanted to die. As Dr.
Willem Kolff noted, perhaps from an antipaternalistic perspective, if the patient “suffers and feels it isn’t worth
it any more, he has a key that he can apply. … I think it is entirely legitimate that this man whose life has been
extended should have the right to cut it off if he doesn’t want it, if [his] life ceases to be enjoyable.”44
Would Clark’s use of the key to turn off the artificial heart have been an act of suicide? If he had refused to
accept the artificial heart in the first place, few would have labeled his act a suicide. His overall condition was
extremely poor, the artificial heart was experimental, and no suicidal intention was evident. If, on the other hand,
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Clark had intentionally shot himself with a pistol while on the artificial heart, his act would have been classified
as suicide.
Our main concern is paternalistic intervention in acts of attempted suicide. The primary moral issue is that if
autonomous suicide is a protected moral right, then the state, health professionals, and others have no legitimate
grounds for intervention in autonomous suicide attempts. No one doubts that we should intervene to prevent
suicide by substantially nonautonomous persons, and few wish to return to the days when suicide was a criminal
act. However, if there is an autonomy right to commit suicide, then we could not legitimately attempt to prevent
an autonomous but imprudent individual from committing suicide.
A clear and relevant example of attempted suicide appears in the following case, involving John K., a thirty-two-
year-old lawyer. Two neurologists independently confirmed that his facial twitching, which had been evident for
three months, was an early sign of Huntington’s disease, a neurological disorder that progressively worsens,
leads to irreversible dementia, and is uniformly fatal in approximately ten years. His mother suffered a horrible
death from the same disease, and John K. had often said that he would prefer to die than to suffer the way his
mother had suffered. Over several years he was anxious, drank heavily, and sought psychiatric help for
intermittent depression. After he received this diagnosis, he told his psychiatrist about his situation and asked for
help in committing suicide. After the psychiatrist refused to help, John K. attempted to take his own life by
ingesting his antidepressant medication, leaving a note of explanation to his wife and child.45
Several interventions occurred or could have occurred in this case. First, the psychiatrist refused to assist John
K.’s suicide and would have sought involuntary commitment had John K. not insisted, convincingly, that he did
not plan to kill himself anytime soon. The psychiatrist appears to have thought that he could provide appropriate
psychotherapy over time. Second, John K.’s wife found him unconscious and rushed him to the emergency
room. Third, the emergency room staff decided to treat him despite the suicide note. The question is which, if
any, of these possible or actual interventions is justifiable.
A widely accepted account of our obligations relies on a strategy of temporary intervention devised by John
Stuart Mill. On this account, provisional intervention is justified to ascertain whether a person is acting
autonomously, but further intervention is unjustified once it is clear that the person’s actions are substantially
autonomous. Glanville Williams used this strategy in a classic statement of the position:
If one suddenly comes upon another person attempting suicide, the natural and humane thing to do
is to try to stop him, for the purpose of ascertaining the cause of his distress and attempting to
remedy it, or else of attempting moral dissuasion if it seems that the act of suicide shows lack of
consideration for others, or else again from the purpose of trying to persuade him to accept
psychiatric help if this seems to be called for. … But nothing longer than a temporary restraint could
be defended. I would gravely doubt whether a suicide attempt should be a factor leading to a
diagnosis of psychosis or to compulsory admission to a hospital. Psychiatrists are too ready to
assume that an attempt to commit suicide is the act of mentally sick persons.46
This strong antipaternalist stance might be challenged on two grounds. First, failure to intervene in a more
forceful manner than Williams allows symbolically communicates to potentially suicidal persons a lack of
communal concern and seems to diminish communal responsibility. Second, many persons who commit or
attempt to commit suicide are mentally ill, clinically depressed, or destabilized by a crisis and are, therefore, not
acting autonomously. Many mental health professionals believe that suicides generally result from maladaptive
attitudes or illnesses needing therapeutic attention and social support. In a typical circumstance the suicidal
person plans how to end life while simultaneously holding fantasies about how rescue will occur, including
rescue from the negative circumstances prompting the suicide as well as rescue from the suicide itself. If the
suicide springs from clinical depression for which the patient has sought treatment or constitutes a call for help,
a failure to intervene shows disrespect for the person’s deepest autonomous wishes, including his or her hopes
for the future.
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Nonetheless, caution is needed in any such account of communal beneficence, which may be expressed
paternalistically through unjustifiably forceful interventions. Although suicide has been decriminalized in most
countries, a suicide attempt, irrespective of motive, almost universally provides a legal basis for public officers
to intervene, as well as grounds for at least temporary involuntary hospitalization.47 Still, the burden of proof
falls on those who claim that the patient’s judgment is insufficiently autonomous.
Consider the following instructive example involving Ida Rollin, seventy-four years old and suffering from
ovarian cancer. Her physicians truthfully told her that she had only a few months to live and that her dying
would be painful and upsetting. Rollin indicated to her daughter that she wanted to end her life and requested
assistance. The daughter secured some pills and conveyed a doctor’s instructions about how they should be
taken. When the daughter later expressed reservations about these plans, her husband reminded her that they
“weren’t driving, she [Ida Rollin] was,” and that they were only “navigators.”48
This metaphor-laden reference to rightful authority is a reminder that those who propose suicide intervention to
prevent such persons from control over their lives need a moral justification that fits the context. Occasions arise
in health care and beyond when it is appropriate to step aside and allow a person to bring his or her life to an
end, and perhaps even to assist in facilitating the death, just as occasions exist when it is appropriate to
intervene. (See Chapter 5 on physician-assisted forms of ending life, pp. 184–93.)
Denying Requests for Nonbeneficial Procedures
Patients and surrogates sometimes request medical procedures that the clinician is convinced will not be
beneficial and will perhaps be harmful. Sometimes denials of such requests are paternalistic.
Passive paternalism. A passive paternalistic act occurs when professionals refuse, for reasons of beneficence, to
carry out a patient’s positive preferences for an intervention.49 The following is a case in point: Elizabeth
Stanley, a sexually active twenty-six-year-old intern, requests a tubal ligation, insisting that she has thought
about this request for months, dislikes available contraceptives, does not want children, and understands that
tubal ligation is irreversible. When the gynecologist suggests that she might someday want to get married and
have children, she responds that she would either find a husband who did not want children or adopt children.
She thinks that she will not change her mind and wants the tubal ligation to make it impossible for her to
reconsider. She has scheduled vacation time from work in two weeks and wants the surgery then.50
If a physician refuses to perform the tubal ligation on grounds of the patient’s benefit, the decision is
paternalistic. However, if the physician refuses purely on grounds of conscience (“I won’t do such procedures as
a matter of personal moral convictions”), the refusal may not rest on any type of paternalistic motive.
Passive paternalism is usually easier to justify than active paternalism, because physicians generally do not have
a moral obligation to carry out their patients’ wishes when they are incompatible with accepted standards of
medical practice, conflict with their physician’s judgment about medical benefit or harm, or are against the
physician’s conscience. Each type of passive paternalism may be justified in some cases, but not in others.
Medical futility. Passive paternalism appears in decisions not to provide patient-requested procedures that are
deemed medically futile. (We treated the topic of medical futility in Chapter 5, pp. 171–74). Consider the classic
case of eighty-five-year-old Helga Wanglie, who was maintained on a respirator in a persistent vegetative state.
The hospital sought to stop the respirator on grounds that it was nonbeneficial in that it could not heal her lungs,
palliate her suffering, or enable her to experience the benefits of life. Surrogate decision makers—her husband, a
son, and a daughter—wanted life support continued on grounds that Mrs. Wanglie would not be better off dead,
that a miracle could occur, that physicians should not play God, and that efforts to remove her life support
epitomize “moral decay in our civilization.”51 (Because the request for continued treatment came from the
family rather than the patient, it can be viewed as a case of passive paternalism only on the assumption that the
family is asserting what it takes to be Mrs. Wanglie’s wishes.)
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If life support for such patients truly is futile, denying patients’ or surrogates’ requests for treatment is
warranted. In these circumstances “clinically nonbeneficial interventions” may be preferable to the term
futility.52 Typically a claim of futility is not that an intervention will harm the patient in violation of the principle
of nonmaleficence but that it will not produce the benefit the patient or the surrogate seeks. A justified belief in
futility cancels a professional’s obligation to provide a medical procedure. However, it is not clear that the
language of futility illuminates the range of relevant ethical issues in passive paternalism, in part because of its
vague uses, which we discussed in Chapter 5 (where we argued that, for all its problems, “futile” is still superior
to a recently proposed substitution of the even vaguer term “inappropriate.” See pp. 172–73.)53
BALANCING BENEFITS, COSTS, AND RISKS
Thus far we have concentrated on the role of the principle of beneficence in clinical medicine, health care, and
public policy. We will now consider how principles of beneficence, particularly the principle of utility in our
sense of the term (see pp. 217–18) can be applied to health policies through tools that analyze and assess
benefits relative to costs and risks. Because formal analysis has assumed a critical role in policy decision
making, the importance of ethical assessment of these methods has increased. These tools often are morally
unobjectionable and may even be morally required in some circumstances, but problems do attend their use.
Physicians routinely base judgments about the most suitable medical treatments on the balance of probable
benefits and probable harms for patients. This criterion is also used in judgments about the ethical acceptability
of research involving human subjects. These judgments consider whether the probable overall benefits—for
society as well as subjects—outweigh the risks to subjects. In submitting a research protocol involving human
subjects to an institutional review board (IRB) for approval, an investigator is expected to array the risks to
subjects and probable benefits to both subjects and society, and then to explain why the probable benefits
outweigh the risks. When IRBs array risks and benefits, determine their respective weights, and reach decisions,
they typically use informal techniques such as expert judgments based on reliable data and analogical reasoning
based on precedents. We focus here on techniques that employ formal, quantitative analysis of costs, risks, and
benefits and offer an ethical assessment of their use as ways of applying principles of beneficence.
The Nature of Costs, Risks, and Benefits
We start with some basic conceptual questions about costs, risks, and benefits. Costs include the resources
required to bring about a benefit as well as the negative effects of pursuing and realizing that benefit. We
concentrate on costs expressed in monetary terms—the primary interpretation of costs in cost-benefit and cost-
effectiveness analysis. The term risk, by contrast, refers to a possible future harm, where harm is defined as a
setback to interests, particularly in life, health, or welfare. Expressions such as minimal risk, reasonable risk, and
high risk usually refer to the chance of a harm’s occurrence—its probability—but often also to the severity of the
harm if it occurs—its magnitude.54
Statements of risk are descriptive inasmuch as they state the probability that harmful events will occur. They are
evaluative inasmuch as they attach a value to the occurrence or prevention of these events. Statements of risk
presume a prior negative evaluation of some condition. At its core, a circumstance of risk involves a possible
occurrence of something that has been evaluated as harmful along with an uncertainty about its actual
occurrence that can be expressed in terms of its probability. Several types of risk exist, including physical,
psychological, financial, and legal risks.
The term benefit sometimes refers to cost avoidance and risk reduction, but more commonly in biomedicine it
refers to something of positive value, such as life or improvement in health. Unlike risk, benefit is not itself a
probabilistic term. Probable benefit is the proper contrast to risk, and benefits are comparable to harms rather
than to risks of harm. Accordingly, risk-benefit relations are best understood in terms of a ratio between the
probability and magnitude of an anticipated benefit and the probability and magnitude of an anticipated harm.
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Risk Assessment and Values in Conflict
Risk assessment involves the analysis and evaluation of probabilities of negative outcomes, especially harms.
Risk identification seeks to locate a hazard. Risk estimation determines the probability and magnitude of harm
from that hazard. Risk evaluation determines the acceptability of the identified and estimated risks, often in
relation to other objectives. Evaluation of risk in relation to probable benefits is often labeled risk-benefit
analysis (RBA), which may be formulated in terms of a ratio of expected benefits to risks and may lead to a
judgment about the acceptability of the risk under assessment. Risk identification, estimation, and evaluation are
all stages in risk assessment. The next stage in the process is risk management—the set of individual,
institutional, or policy responses to the analysis and assessment of risk, including decisions to reduce or control
risks.55 For example, risk management in hospitals includes setting policies to reduce the risk of medical
malpractice suits as well as the risk of accidents, injuries, and medical errors.
Risk assessment informs technology assessment, environmental impact statements, and public policies
protecting health and safety. The following schema of magnitude and probability of harm captures important
features of risk assessment:
Magnitude of Harm
Major Minor
High 1 2
Probability of
Harm
Low 3 4
Under category 4, questions arise about whether some risks are so insignificant, in terms of either probability or
magnitude of harm or both, as not to merit attention. So-called de minimis risks are acceptable risks because they
can be interpreted as effectively zero. According to the FDA, a risk of less than one cancer per million persons
exposed is de minimis. However, using this quantitative threshold or cutoff point in a de minimis approach may
be problematic. For instance, an annual risk of one cancer per million persons for the US population would
produce the same number of fatalities (i.e., 300) as a risk of one per one hundred in a town with a population of
30,000. In focusing on the annual risk of cancer or death to one individual per million, the de minimis approach
may neglect the cumulative, overall level of risk created for individuals over their lifetimes by the addition of
several one-per-million risks.56
Risk assessment also focuses on the acceptability of risks relative to the benefits sought. With the possible
exception of de minimis risks, most risks will be considered acceptable or unacceptable in relation to the
probable benefits of the actions that carry those risks—for example, the benefits of radiation, hormone therapy,
or a surgical procedure in managing prostate cancer or the benefits of nuclear power or toxic chemicals in the
workplace.57 Vigorous disputes sometimes emerge over competing risk-benefit analyses. Consider, for instance,
the judgments about newborn male circumcision by two well-informed medical societies: The Canadian
Pediatrics Society concluded that the benefits of circumcision do not in most situations exceed its risks, whereas
the American Society of Pediatrics (as well as the US Centers for Disease Control) held that its benefits exceed
its risks, resulting in divergent recommendations to parents.58
Risk-benefit analyses in the regulation of drugs and medical devices. Some of the conceptual, normative, and
empirical issues in risk assessment and in RBA are evident in governmental regulation of drugs and medical
devices.
The US FDA requires three phases of human trials of drugs prior to regulatory approval. Each stage involves
RBA to determine whether to proceed to the next stage and whether to approve a drug for wider use. As noted
above, patients, physicians, and other health care professionals have often criticized the process of drug approval
because of the length of time required. Some critics contend that the standard of evidence for a favorable risk-
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benefit ratio is too high and thus severely limits patients’ access to promising new drugs, often in times of dire
need created by serious, even fatal, medical conditions. (See the discussion of expanded access earlier in this
chapter, pp 225–27.) Other critics charge that the process is not rigorous enough in view of the problems that
sometimes appear after drug approval.59 A related and morally important criticism is that approved drugs that
turn out to be inefficacious or unsafe in wider use are sometimes not removed from the market quickly enough,
if at all. FDA policy is that drugs are removed from the market whenever their risks outweigh their benefits. For
example, a drug might be removed from the market because of an uncorrectable safety issue that was unknown
at the point of approval. However, removal from the market may not occur for many years after it becomes
reasonably clear that risks outweigh benefits.
An example involving medical devices presents a classic case of difficult and controversial RBAs and
assessments undertaken by the FDA in its regulatory decisions. For more than thirty years, thousands of women
used silicone gel-filled breast implants to augment their breast sizes, to reshape their breasts, or to reconstruct
their breasts following mastectomies for cancer or other surgery. (Saline-filled implants were also used. Both
types have a silicone outer shell, but the silicone gel-filled implants generated greater concern.) These implants
were already on the market when legislation in 1976 required that manufacturers provide data about safety and
efficacy for certain medical devices. Implant manufacturers were not required to provide these data unless
questions arose. The health and safety concerns that subsequently emerged centered on the silicone gel-filled
implants’ longevity, rate of rupture, and link with various diseases.
Defenders of the complete prohibition of these implants contended that no woman should be allowed to take a
risk of unknown but potentially serious magnitude because her consent might not be adequately informed. FDA
Commissioner David Kessler and others defended a restrictive policy, which was implemented in 1992. Kessler
argued that for “patients with cancer and others with a need for breast reconstruction,” a favorable risk-benefit
ratio could exist in carefully controlled circumstances.60 Sharply distinguishing candidates for reconstruction
following surgery from candidates for augmentation, he held that a favorable risk-benefit ratio existed only for
candidates for reconstruction.
Because candidates for augmentation still had breast tissue, they were considered to be at “higher risk” from
these implants. In the presence of an implant, the argument went, mammography might not detect breast cancer,
and the use of mammography could create a risk of radiation exposure in healthy young women with breast
tissue who have silent ruptures of the silicone gel-filled implant without symptoms. Kessler wrote: “In our
opinion the risk-benefit ratio does not at this time favor the unrestricted use of silicone gel breast implants in
healthy women.”
Kessler denied that this decision involved “any judgment about values,” but critics rightly charged that, in fact, it
was based on contested values and was inappropriately paternalistic. There is evidence that the FDA gave an
unduly heavy weight to unknown risks largely because the agency discounted the self-perceived benefits of
breast implants for women except in cases of reconstruction. The agency then held these implants to a high
standard of safety instead of allowing women to decide for themselves whether to accept the risks for their own
subjective benefits.61
If the evidence had indicated high risk relative to benefit, as well as unreasonable risk-taking by women, a
different conclusion might have been warranted, but evidence available at the time and since points in the other
direction. The FDA policy was unjustifiably paternalistic, noticeably so when compared to the less restrictive
public decisions reached in European countries.62 A more defensible, nonpaternalistic policy would have
permitted the continued use of silicone gel-filled breast implants, regardless of the users’ biological conditions
and aims, while requiring adequate disclosure of information about risks. Raising the level of disclosure
standards, as the FDA has done in some cases, would have been more appropriate than restraining choice.
In 2006, based on new data from manufacturers and assessments by its advisory committees, the FDA approved
the marketing of two companies’ silicone gel-filled breast implants to women of all ages for breast
reconstruction and to women twenty-two years old and older for breast augmentation.63 Even though these
breast implants have “frequent local complications and adverse outcomes,” the FDA determined that their
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benefits and risks are “sufficiently well understood for women to make informed decisions about their use,”64 a
conclusion that allows the FDA to escape the problems of paternalism that plagued earlier policies. The FDA
has since continued to monitor data about implants and communicate new safety information. It has also called
for manufacturers and physicians to provide current and balanced information to help inform women’s decisions.
Another concern is that the RBA used in the approval and regulation of drugs or devices is sometimes too
narrow or limited. For example, as this edition of our book goes to press, the United States faces a devastating
opioid epidemic that is much worse than in most other countries. At least two million people in the United States
have an opioid use disorder (OUD), including dependence and abuse, that involves prescribed medications. Six
hundred thousand more have an OUD that involves heroin. Approximately ninety people die each day from an
opioid overdose. This epidemic has resulted in part from important, badly needed, and overdue beneficent efforts
to treat patients’ pain more effectively. In light of the epidemic’s wide-ranging individual and societal harms and
costs, a consensus committee of the US National Academies called on the FDA to use a broader analysis of risks
and benefits in approving and monitoring prescription opioids for pain management.65 This analysis is broader
than usual in at least two ways: It involves a comprehensive, systematic public health evaluation and a more
thorough post-approval monitoring and oversight that attends to patterns of prescription and use.
The FDA’s approach to drug approval usually focuses specifically on the product, the drug, in light of the data
that the manufacturer generates and provides on that drug. Then the FDA balances the probable benefits
indicated by these data against the risks that are known, or unknown, at the time of the analysis. However, this
approach may fail to balance adequately the individual and societal benefits and risks of opioid drugs as they are
actually prescribed and used in practice, where they produce a variety of effects on households and society
generally. It is important, but insufficient, to evaluate the probable benefits (including relief of pain and
improvement of function) and risks (including respiratory depression and death as well as opioid use disorder)
for individual patients. It is also necessary to evaluate the benefits and risks to others in a patient’s household
and in the community, such as effects on crime and unemployment, along with the drug’s potential impact on
legal and illegal markets for opioids, diversion of prescription opioids, transition to illicit opioids, and injection-
related harms such as HIV and hepatitis C virus. Moreover, the consensus committee’s report called for attention
to distinctive benefit-risk profiles of different subpopulations and geographic areas—a concern of equity.66 In
short, broad public health considerations need to be incorporated thoroughly and systematically into regulatory
decisions about opioid approval.
Because this task is so broad, incorporates so many factors and variables, and requires data that are difficult to
obtain in high quality, a formal, comprehensive, systematic RBA will be difficult and perhaps impossible to
achieve. More likely the FDA along with other involved public and private bodies will need to balance, in
formal and informal ways, the benefits and risks to both patients needing pain relief and others exposed to the
wide-ranging risks in order to determine appropriate policies. This balancing should occur in a transparent,
public, deliberative context, with input from all affected stakeholders.
We reach two general conclusions: First, it is morally legitimate and often obligatory for society to act
beneficently through the government and its agencies to protect citizens from medical drugs and devices that are
harmful or that have not been established to be safe and efficacious. Hence, the FDA and comparable agencies
play a justifiable regulatory role. Our conclusion that the FDA should not have severely restricted or prohibited
the use of silicone gel-filled breast implants should not be interpreted as an argument against the agency’s
indispensable social role. As the opioid epidemic indicates, the conduct and use of RBA in drug and device
approval and monitoring may need to be broader than often thought even though it may inevitably be less formal
and less systematic than desired because of the wide range of potentially relevant factors. Second, RBAs are not
value-free. Values are evident in various RBA-based decisions, including those made in the breast implant case
and in the evaluation of opioid drugs.
Risk perception. Perceptions of risk vary in different human communities, and an individual’s perception of
risks in any of these communities may differ from an expert’s assessment. Variations may reflect different goals
and “risk budgets,” as well as different qualitative assessments of particular risks, including whether the risks in
question are voluntary, controllable, highly salient, novel, or dreaded.67
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Differences in risk perception suggest some limits of attempts to use quantitative statements of probability and
magnitude in reaching conclusions about the acceptability of different risks. The public’s informed but
subjectively interpreted perception of a possible or probable harm should be considered and given substantial
weight when public policy is formulated, but the appropriate weighting will vary with each case. The public
sometimes holds factually mistaken or only partially informed views about risks that experts can identify. These
mistaken or underinformed public views can and should be corrected through a fair public policy process.68
Precaution: principle or process? Sometimes a new technology such as nanotechnology or a novel activity such
as injecting bovine growth hormone into dairy cows appears to pose a health threat or create a hazard, thereby
evoking public concern. Scientists may lack evidence to determine the magnitude of the possible negative
outcome or the probabilities of its occurrence, perhaps because of uncertain cause-effect relations. The risks
cannot be quantified and an appropriate benefit-risk-cost analysis is not constructible. At best, beneficence can
be implemented through precautionary measures. Which actions, if any, are justifiable in the face of uncertain
risks?
Several common maxims come to mind: Better safe than sorry; look before you leap; and an ounce of prevention
is worth a pound of cure. As rough guides for decision making, these maxims are unobjectionable. A so-called
precautionary principle has been implemented in some international treaties as well as in laws and regulations in
several countries to protect the environment and public health.69 It is misleading to speak, as some
commentators and policies do, about the precautionary principle because there are so many different versions of
the concept of precaution in law and policy and of proposed normative principles that have different strengths
and weaknesses. One analysis identifies as many as nineteen different formulations,70 and views expressed
about particular precautionary measures are rarely expressed in a form that is truly a principle.
A precautionary principle, in its most demanding versions, could be a recipe for paralysis; it may be too abstract
to give substantive, practical guidance, and appeals to it may lead parties to carefully examine only one narrow
set of risks while ignoring other risks and potential benefits.71 For example, appealing to this principle to
prevent scientific research using human cells and animal chimeras, because of a perceived but vague risk of
adverse consequences, may neglect significant potential health benefits that could result from the research.
Precaution often has a price.72 Perils created by some formulations and uses of a precautionary principle include
distortion of public policy as a result of speculative and theoretical threats that divert attention from real, albeit
less dramatic, threats.
However, if properly formulated, some precautionary approaches, processes, and measures are meaningful and
justified.73 Depending on what is valued and what is at risk, it may be ethically justifiable and even obligatory to
take steps, in the absence of conclusive scientific evidence, to avoid a hazard where the harm would be both
serious and irreversible—that is, a catastrophe.74 Triggering conditions for these measures include plausible
evidence of potential major harm where it is not possible to adequately characterize and quantify risk because of
scientific uncertainty and ignorance. The process of developing precautionary norms should not be viewed as an
alternative to risk analysis and scientific research. It should instead be viewed as a way to supplement risk
appraisals when the available scientific evidence does not permit firm characterizations of the probability or
magnitude of plausible risks.
Prudent use of precaution is more an approach or a process than an action based on a genuine principle, and it
needs to be justified by a rigorous interpretation of the principles of beneficence and nonmaleficence. “We do
not need a precautionary principle,” Christian Munthe writes; “we need a policy that expresses a proper degree
of precaution.”75 Measures commonly associated with a precautionary process include transparency,
involvement of the public, and consultation with experts about possible responses to threats marked by
ignorance or uncertainty about probabilities and magnitudes. Although transparency sometimes heightens fears,
the public good is best served by risk-avoidance or risk-reduction policies that are generally consistent with the
society’s basic values and the public’s reflective preferences. The acceptance or rejection of any particular
precautionary approach will depend on a careful weighing of ethical, social, cultural, and psychological
considerations.76
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It is easy to oversimplify and unduly magnify cultural differences by suggesting, for instance, that Europe is
more precaution-oriented than the United States. Even if precautionary approaches may have more traction in
laws, regulations, and discourse in Europe than in the United States, both adopt a variety of precautionary
measures in response to the same and to different perceived threats or hazards.77
Cost-Effectiveness and Cost-Benefit Analyses
Cost-effectiveness analysis (CEA) and cost-benefit analysis (CBA) are widely used, but sometimes
controversial, tools of formal analysis underlying public policies regarding health, safety, and medical
technologies.78 Some policies are directed at burgeoning demands for expensive medical care and the need to
contain costs. In assessing such policies, CEA and CBA appear precise and helpful because they present trade-
offs in quantified terms.79 Yet they are not unproblematic.
Defenders of these techniques praise them as ways to reduce the intuitive weighing of options and to avoid
subjective and political decisions. Critics claim that these methods of analysis are not sufficiently
comprehensive, that they fail to include all relevant values and options, that they frequently conflict with
principles of justice, and that they are often themselves subjective and biased. Critics also charge that these
techniques concentrate decision-making authority in the hands of narrow, technical professionals (e.g., some
health economists) who often fail to understand moral, social, legal, and political constraints that legitimately
limit use of these methods.
CEA and CBA use different terms to state the value of outcomes. CBA measures both the benefits and the costs
in monetary terms, whereas CEA measures the benefits in nonmonetary terms, such as years of life, quality-
adjusted life-years, or cases of disease. CEA offers a bottom line such as “cost per year of life saved,” whereas
CBA offers a bottom line of a benefit-cost ratio stated in monetary figures that express the common
measurement. Although CBA often begins by measuring different quantitative units (such as number of
accidents, statistical deaths, and number of persons treated), it attempts to convert and express these seemingly
incommensurable units of measurement into a common figure.
Because it uses the common metric of money, CBA in theory permits a comparison of programs that save lives
with, for example, programs that reduce disability or accomplish other goals, such as public education. By
contrast, CEA does not permit an evaluation of the inherent worth of programs or a comparative evaluation of
programs with different aims. Instead, CEA functions best to compare and evaluate different programs that share
an identical aim, such as saving years of life.
Many CEAs involve comparing alternative courses of action that have similar health benefits to determine which
is the most cost-effective. A simple and now classic example is the use of the guaiac test, an inexpensive test for
detecting minute amounts of blood in the stool. Such blood may result from several problems, including
hemorrhoids, benign intestinal polyps, or colonic cancer. A guaiac test cannot identify the cause of the bleeding,
but if there is a positive stool guaiac and no other obvious cause for the bleeding, physicians undertake other
tests. In the mid-1970s, the American Cancer Society proposed using six sequential stool guaiac tests to screen
for colorectal cancers. Two analysts prepared a careful CEA of the six stool guaiac tests. They assumed that the
initial test costs four dollars, that each additional test costs one dollar, and that each successive test detects many
fewer cases of cancer. They then determined that the marginal cost per case of detected cancer increased
dramatically: $1,175 for one test; $5,492 for two tests; $49,150 for three tests; $469,534 for four tests; $4.7
million for five tests; and $47 million for the full six-test screen.80 Such findings do not dictate a conclusion, but
the analysis provides relevant data for a society needing to allocate resources, for insurance companies and
hospitals setting policies, for physicians making recommendations to patients, and for patients considering
diagnostic procedures.
However, confusion can mar the conduct and uses of CEA. In some cases, when two programs are compared,
the cost savings of one may be sufficient to view it as more cost-effective than the other; but we should not
confuse CEA with either reduced costs or increased effectiveness, because the best conclusions often depend on
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both together. A program may be more cost-effective than another even if (1) it costs more, because it may
increase medical effectiveness, or (2) it leads to an overall decrease in medical effectiveness, because it may
greatly reduce the costs. No form of analysis has the moral power to dictate the use of a particular medical
procedure simply because that procedure has the lowest cost-effectiveness ratio. To assign priority to the
alternative with the lowest cost-effectiveness ratio is to view medical diagnosis and therapy in unjustifiably
narrow terms.
THE VALUE AND QUALITY OF LIFE
We turn now to controversies regarding how to place a value on a human life, which have centered on CBAs,
and to controversies over the value of quality-adjusted life-years (QALYs), which have centered on CEAs.
Valuing Lives
We begin by considering indicators of appropriate social beneficence that involve assigning an economic value
to human life. A society may spend amount x to save a life in one setting (e.g., by reducing the risk of death
from cancer) but only spend amount y to save a life in another setting (e.g., by reducing the risk of death from
mining accidents). One objective in determining the value of a life is to develop consistency across practices and
policies.
Analysts have developed several methods to determine the value of human life. These include discounted future
earnings (DFE) and willingness to pay (WTP). According to DFE, we can determine the monetary value of lives
by considering what people at risk of some disease or accident could be expected to earn if they survived.
Although this approach can help measure the costs of diseases, accidents, and death, it risks reducing people’s
value to their potential economic worth and gives an unfair priority to those who would be expected to have
greater future earnings.
WTP, which is now more commonly used, considers how much individuals would be willing to pay to reduce
the risks of death, either through their revealed preferences—that is, decisions people actually make in their
lives, such as decisions about their work or their retirement plans—or through their expressed preferences—that
is, what people say in response to hypothetical questions about their preferences. For revealed preferences to be
meaningful, individuals must understand the risks in their lives and voluntarily assume those risks—two
conditions of autonomous choice that often are not met. For expressed preferences, individuals’ answers to
hypothetical questions may not accurately indicate how much they would be willing to spend on actual programs
to reduce their (and others’) risk of death. Individuals’ financial situations (including their household income,
real estate, and financial solvency) are also likely to have an impact on their expressed willingness to pay.81
Even if we rarely put an explicit monetary value on a human life, proponents of CBA often urge such a strategy,
notably so in the context of “a statistical life.”82 However, qualitative factors, such as how deaths occur, are
often more important to people than purely economic considerations. Moreover, beneficence is often expressed
in policies such as rescuing trapped coal miners that symbolize societal benevolence and affirm the value of
victims even when these policies would not be supported by a CBA focused on the economic value of life,
determined by WTP.
In our judgment, data gained from CBA and other analytic techniques can be made relevant to the formulation
and assessment of public policies and can provide valuable information and insights if appropriate qualifications
and limits are articulated, but they provide only one set of indicators of appropriate social beneficence. It is often
not necessary to put a specific economic value on human life to evaluate different possible risk-reduction
policies and to compare their costs. Evaluation may reasonably focus on the lives or the life-years saved, without
attempting to convert them into monetary terms. In health care, CBA has now, appropriately, declined in use and
importance by comparison to CEA, which often promotes the goal of maximizing QALYs, a topic to which we
now turn.83
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Valuing Quality-Adjusted Life-Years
Quality of life and QALYs. Quality of life is as important as saving lives and years of life in several areas of
health policy and health care. Many individuals, when contemplating different treatments for a particular
condition, are willing to trade some life-years for improved quality of life during their remaining years.
Accordingly, researchers and policymakers have sought measures, called health-adjusted life-years (HALYs),
that combine longevity with health status. QALYs are the most widely used type of HALY.84 The National
Institute for Health and Clinical Excellence (NICE), a public body of the Department of Health in the United
Kingdom, uses QALYs in evaluations designed for the British system of resource allocation. NICE defines a
QALY as “a measure of health outcome which looks at both length of life and quality of life. QALYS are
calculated by estimating the years of life remaining for a patient following a particular care pathway and
weighting each year with a quality of life score.”85 In short, a QALY is a calculation that takes into account both
the quantity and the quality of life produced by medical interventions.
An influential premise underlying use of QALYs is that “if an extra year of healthy (i.e., good quality) life-
expectancy is worth one, then an extra year of unhealthy (i.e., poor quality) life-expectancy must be worth less
than one (for why otherwise do people seek to be healthy?).”86 On this scale, the value of the condition of death
is zero. Various states of illness or disability better than death but short of full health receive a value between
zero and one. Health conditions assessed as worse than death receive a negative value. The value of particular
health outcomes depends on the increase in the utility of the health state and the number of years it lasts.87
The goal of QALY analysis is to bring length of life and quality of life into a single framework of evaluation.88
QALYs can be used to monitor the effects of treatments on patients in clinical practice or in clinical trials, to
determine what to recommend to patients, to provide information to patients about the effects of different
treatments, and to assist in resource allocation in health care. The goal is to make this basis for choices between
options as clear and rational as possible.
In an influential case study, British health economist Alan Williams used QALYs to examine the cost-
effectiveness of coronary artery bypass graft surgery. In his analysis, bypass grafting compares favorably with
pacemakers for heart block. It is superior to heart transplantation and the treatment of end-stage renal failure. He
also found that bypass grafting for severe angina and extensive coronary artery disease is more cost-effective
than for less severe cases. The rate of survival by itself can be misleading for coronary artery bypass grafting
and many other therapeutic procedures that also have a major impact on quality of life. Ultimately, Williams
recommended that resources “be redeployed at the margin to procedures for which the benefits to patients are
high in relation to the costs.”89
Nonetheless, the methods for determining quality of life pose many difficulties. Analysts often start with rough
measures, such as physical mobility, freedom from pain and distress, and the capacity to perform the activities of
daily life and to engage in social interactions. Quality-of-life measures are theoretically attractive as a way to
provide information about the ingredients of a good life, but practically difficult to implement. However, some
instruments can and should be developed and refined to present meaningful and accurate measures of health-
related quality of life. Without such instruments, we are likely to operate with implicit and unexamined views
about trade-offs between quantity and quality of life in relation to cost.
Still, these instruments can be misleading because of their built-in ethical assumptions, a problem to which we
turn next.
Ethical assumptions of QALYs. Many ethical assumptions are incorporated into QALY-based CEA.
Utilitarianism is CEA’s philosophical parent, and some of its problems carry over to its offspring, even though
there are differences.90 Implicit in QALY-based CEA is the idea that health maximization is the only relevant
objective of health services. But some nonhealth benefits or utilities of health services also contribute to quality
of life. As our discussion of silicone gel-filled breast implants noted earlier in this chapter, conditions such as
asymmetrical breasts may affect a person’s subjective estimate of quality of life and may constitute a source of
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distress. The problem is that QALY-based CEAs attach utility only to selected outcomes while neglecting values
such as how care is provided (e.g., whether it is personal care) and how it is distributed (e.g., whether universal
access is provided).91
Related issues arise about whether the use of QALYs in CEA is adequately egalitarian. Proponents of QALY-
based CEA hold that each healthy life-year is equally valuable for everyone. A QALY is a QALY, regardless of
who possesses it.92 However, QALY-based CEA may in effect discriminate against older people, because,
conditions being equal, saving the life of a younger person is likely to produce more QALYs than saving the life
of an older person.93
QALY-based CEA also fails to attend adequately to other problems of justice, including the needs of people with
disabilities and the needs of the worst off in terms of the severity of their current illness and their health over a
lifetime.94 It does not consider how life-years are distributed among patients, and it may not include efforts to
reduce the number of individual victims in its attempts to increase the number of life-years. From this
standpoint, no difference exists between saving one person who can be expected to have forty QALYs and
saving two people who can be expected to have twenty QALYs each. In principle, CEA will give priority to
saving one person with forty expected QALYs over saving two persons with only nineteen expected QALYs
each. Hence, QALY-based CEA favors life-years over individual lives, and the number of life-years over the
number of individual lives, while failing to recognize that societal and professional obligations of beneficence
sometimes require rescuing endangered individual lives.95
A tension can easily emerge between QALY-based CEA and the duty to rescue, even though both are ultimately
grounded in obligations of beneficence. This tension appeared in a classic effort by the Oregon Health Services
Commission to develop a prioritized list of health services so that the state of Oregon could expand its Medicaid
coverage to all of its poor citizens. (See our examination of this policy in Chapter 7, pp. 301–2.) A draft priority
list ranked some life-saving procedures (e.g., appendectomy for acute appendicitis) below more routine
procedures (e.g., capping teeth). About this kind of priority listing, David Hadorn observed: “The cost-
effectiveness analysis approach used to create the initial list conflicted directly with the powerful ‘Rule of
Rescue’—people’s perceived duty to save endangered life whenever possible.”96 If unqualified by further
ethical considerations, QALY-based CEA’s methodological assignment of priority to life-years over individual
lives implies that beneficence-based rescue (especially life-saving) is less significant than cost utility, that the
distribution of life-years is unimportant, that saving more lives is less important than maximizing the number of
life-years, and that quality of life is more important than quantity of life. Each of these priorities needs careful
scrutiny in each context in which QALYs are used.
Important questions of justice, fairness, and equity, as well as beneficence challenge both the conduct and the
use of QALY-based CEAs. Some of these challenges can be addressed by modifying underlying assumptions,
such as those related to disability and age. However, absent such modifications, it is unclear how far QALY-
based CEAs can incorporate relevant concerns of justice, fairness, and equity that reflect social values, beyond
individuals’ willingness to pay. Equity-weighted CEAs have been proposed that seem attractive,97 but the
combination of QALY and equity in a single CEA is problematic, on grounds of feasibility as well as potential
distortion. It seems more reasonable for decision makers to accept QALY-based CEAs, with their assumptions
properly examined and modified or corrected, as one major source of input for deliberations. The use of this
tentatively accepted input can then be limited and constrained by considerations of justice—a major topic
explored further in Chapter 7.
CONCLUSION
In this chapter we have distinguished two principles of beneficence—positive beneficence and utility—and
defended the theoretical and practical importance of the distinction between obligatory beneficence and ideal
beneficence. We have developed an account of paternalism that makes it possible to justify a restricted range of
both soft and hard paternalistic actions. We have nonetheless acknowledged that, in addition to its potential for
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disrespect of personal autonomy, a policy or rule in law and institutions permitting hard paternalistic actions in
professional practice will be dangerous because of the risk of abuse it invites. The fact that physicians are
situated to make sound and caring decisions from a position of professional expertise should be one factor, but
only one factor, in the on-balance consideration of whether paternalistic interventions in medicine are morally
justified.
Finally, we examined formal techniques of analysis—RBA, CBA, and CEA—and concluded that, with suitable
qualifications, they are morally unobjectionable ways to explicate the principle of utility, as a principle of
beneficence, but that principles of respect for autonomy and justice often should be used to set limits on the uses
of these techniques. Chapter 7 develops an account of some principles of justice that began to surface in the final
parts of this chapter.
NOTES
1. 1. Bernard Gert presents an aggressive and impressive theory of this sort. He regards beneficence as in the
realm of moral ideals, not the realm of moral obligations. See our exegesis and critical evaluation of his
theory in Chapter 10, pp. 428–32.
2. 2. W. D. Ross, The Right and the Good (Oxford: Clarendon, 1930), p. 21.
3. 3. Peter Singer, “Famine, Affluence, and Morality,” Philosophy & Public Affairs 1 (1972): 229–43.
Richard Arneson generally agrees with Singer but holds that while distance does not change rightness or
wrongness of action or inaction, it can, in an act-consequentialist framework, affect an agent’s
blameworthiness and morally appropriate guilt. See Arneson, “Moral Limits on the Demands of
Beneficence?” in The Ethics of Assistance: Morality and the Distant Needy, ed. Deen K. Chatterjee
(Cambridge: Cambridge University Press, 2004), pp. 33–58.
4. 4. Peter Singer, Practical Ethics, 3rd ed. (Cambridge: Cambridge University Press, 2011), chap. 8.
5. 5. Peter Singer, The Life You Can Save: Acting Now to End World Poverty (New York: Random House,
2009), especially chaps. 9–10.
6. 6. For assessments of overdemanding theories, see, among others, Liam B. Murphy, “The Demands of
Beneficence,” Philosophy & Public Affairs 22 (1993): 267–92; Murphy, Moral Demands in Nonideal
Theory (New York: Oxford University Press, 2000); Richard W. Miller, “Beneficence, Duty and
Distance,” Philosophy & Public Affairs 32 (2004): 357–83; Miller, Globalizing Justice: The Ethics of
Poverty and Power (Oxford: Oxford University Press, 2010); and Brad Hooker, “The Demandingness
Objection,” in The Problem of Moral Demandingness, ed. Timothy Chappell (Basingstoke, UK: Palgrave
Macmillan 2009), pp. 148–62.
7. 7. Our formulations are indebted to Eric D’Arcy, Human Acts: An Essay in Their Moral Evaluation
(Oxford: Clarendon, 1963), pp. 56–57. We added the fourth condition and altered others in his
formulation. Our reconstruction profited from Joel Feinberg, Harm to Others, vol. 1 of The Moral Limits
of the Criminal Law (New York: Oxford University Press, 1984), chap. 4.
8. 8. This third condition will need a finer-grained analysis to avoid some problems of what is required if
there is a small (but not insignificant) probability of saving millions of lives at minimal cost to a person. It
is not plausible to hold that a person has no obligation to so act. Condition 3 here could be refined to show
that there must be some appropriate proportionality between probability of success, the value of outcome
to be achieved, and the sacrifice that the agent would incur. Perhaps the formulation should be “a high
ratio of probable benefit relative to the sacrifice made.”
9. 9. On the significant role of AIDS activists, see Steven Epstein, Impure Science: AIDS, Activism, and the
Politics of Knowledge (Berkeley: University of California Press, 1996); and Robert J. Levine, “The Impact
of HIV Infection on Society’s Perception of Clinical Trials,” Kennedy Institute of Ethics Journal 4 (1994):
93–98. For some controversies at the time regarding the AIDS activists’ goals, see Institute of Medicine
(later National Academy of Medicine), Expanding Access to Investigational Therapies for HIV Infection
and AIDS (Washington, DC: National Academies Press, 1991).
10. 10. US Food and Drug Administration, “Fast Track, Breakthrough Therapy, Accelerated Approval, and
Priority Review” (information updated February 23, 2018), available at
https://www.fda.gov/forpatients/approvals/fast/ucm20041766.htm (accessed June 9, 2018).
file:///C:/Users/dgsan/Downloads/Chap7.xhtml#ct7
file:///C:/Users/dgsan/Downloads/Chap10.xhtml#ct10
file:///C:/Users/dgsan/Downloads/Chap10.xhtml#Page_428
file:///C:/Users/dgsan/Downloads/Chap10.xhtml#Page_432
https://www.fda.gov/forpatients/approvals/fast/ucm20041766.htm
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11. 11. Our discussion of these issues is intended to cover a variety of actual and possible expanded access
programs. It is not limited to programs that fall under the policies of the US Food and Drug
Administration. For the latter, see “Learn about Expanded Access and Other Treatment Options,” updated
January 4, 2018, available at
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm1
76098.htm (accessed June 7, 2018). In addition, the FDA has a “Parallel Track” policy that “permits wider
access to promising new drugs for AIDS/HIV related diseases under a separate ‘expanded access’ protocol
that ‘parallels’ the controlled clinical trials that are essential to establish the safety and effectiveness of
new drugs.” See US Food and Drug Administration, “Treatment Use of Investigational Drugs—
Information Sheet,” available at https://www.fda.gov/RegulatoryInformation/Guidances/ucm126495.htm,
as updated March 29, 2018 (accessed June 10, 2018).
12. 12. See Laurie McGinley, “Are Right-to-Try Laws a Last Hope for Dying Patients—or a False Hope?”
Washington Post, March 26, 2017, available at https://www.washingtonpost.com/national/health-
science/are-right-to-try-laws-a-last-hope-for-dying-patients–or-a-cruel-sham/2017/03/26/1aa49c7c-10a2-
11e7-ab07-07d9f521f6b5_story.html?utm_term=.061a38dbb205 (accessed June 4, 2018).
13. 13. Lisa Kearns and Alison Bateman-House, “Who Stands to Benefit? Right to Try Law Provisions and
Implications,” Therapeutic Innovation & Regulatory Science 51, no. 2 (2017): 170–76, available at
https://med.nyu.edu/pophealth/sites/default/files/pophealth/Kearns%20BatemanHouse%20RTT%20variati
ons%20in%20TIRS (accessed June 4, 2018); and Elena Fountzilas, Rabih Said, and Apostolia M.
Tsimberidou, “Expanded Access to Investigational Drugs: Balancing Patient Safety with Potential
Therapeutic Benefits,” Expert Opinion on Investigational Drugs 27, no. 2 (2018): 155–62, available at
https://www.tandfonline.com/doi/full/10.1080/13543784.2018.1430137 (accessed June 4, 2018).
14. 14. Michelle M. Mello and Troyen A. Brennan, “The Controversy over High-Dose Chemotherapy with
Autologous Bone Marrow Transplant for Breast Cancer,” Health Affairs 20 (2001): 101–17; Edward A.
Stadtmauer et al., “Conventional-Dose Chemotherapy Compared with High-Dose Chemotherapy Plus
Autologous Hematopoietic Stem-Cell Transplantation for Metastatic Breast Cancer,” New England
Journal of Medicine 342 (2000): 1069–76; and Rabiya A. Tuma, “Expanded-Access Programs: Little
Heard Views from Industry,” Oncology Times 30 (August 10, 2008): 19, 22–23. For a thorough review of
this history, see Richard A. Rettig, Peter D. Jacobson, Cynthia M. Faquhar, and Wade M. Aubry, False
Hope: Bone Marrow Transplantation for Breast Cancer (New York: Oxford University Press, 2007).
15. 15. William C. Buhles, “Compassionate Use: A Story of Ethics and Science in the Development of a New
Drug,” Perspectives in Biology and Medicine 54 (2011): 304–15. The case is far more complicated than
we report here.
16. 16. Cf. conclusions about post-trial access in National Bioethics Advisory Commission (NBAC), Ethical
and Policy Issues in International Research: Clinical Trials in Developing Countries (Bethesda, MD:
NBAC, April 2001), vol. 1, pp. 64–65, 74, especially Recommendation 4.1, available at
https://bioethicsarchive.georgetown.edu/nbac/clinical/Vol1 (accessed August 23, 2018). See also
Nuffield Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries
(London: Nuffield Council on Bioethics, 2002), chap. 9, “What Happens Once Research Is Over?” sects.
9.21–31, available at http://nuffieldbioethics.org/wp-content/uploads/2014/07/Ethics-of-research-related-
to-healthcare-in-developing-countries-I (accessed June 7, 2018).
17. 17. David Hume, “Of Suicide,” in Essays Moral, Political, and Literary, ed. Eugene Miller (Indianapolis,
IN: Liberty Classics, 1985), pp. 577–89.
18. 18. See David A. J. Richards, A Theory of Reasons for Action (Oxford: Clarendon, 1971), p. 186; Allen
Buchanan, “Justice as Reciprocity vs. Subject-Centered Justice,” Philosophy & Public Affairs 19 (1990):
227–52; Lawrence Becker, Reciprocity (Chicago: University of Chicago Press, 1990); and Aristotle,
Nicomachean Ethics, bks. 8–9.
19. 19. See William F. May, “Code and Covenant or Philanthropy and Contract?” in Ethics in Medicine, ed.
Stanley Reiser, Arthur Dyck, and William Curran (Cambridge, MA: MIT Press, 1977), pp. 65–76; and
May, The Healer’s Covenant: Images of the Healer in Medical Ethics, 2nd ed. (Louisville, KY:
Westminster-John Knox Press, 2000).
20. 20. Institute of Medicine (later National Academy of Medicine) of the National Academies, Roundtable
on Evidence-Based Medicine, The Learning Healthcare System: Workshop Summary, ed. LeighAnne
Olsen, Dara Aisner, and J. Michael McGinnis (Washington, DC: National Academies Press, 2007), esp.
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm176098.htm
https://www.fda.gov/RegulatoryInformation/Guidances/ucm126495.htm
https://www.washingtonpost.com/national/health-science/are-right-to-try-laws-a-last-hope-for-dying-patients%E2%80%93or-a-cruel-sham/2017/03/26/1aa49c7c-10a2-11e7-ab07-07d9f521f6b5_story.html?utm_term=.061a38dbb205
https://med.nyu.edu/pophealth/sites/default/files/pophealth/Kearns%20BatemanHouse%20RTT%20variations%20in%20TIRS
https://www.tandfonline.com/doi/full/10.1080/13543784.2018.1430137
https://bioethicsarchive.georgetown.edu/nbac/clinical/Vol1
http://nuffieldbioethics.org/wp-content/uploads/2014/07/Ethics-of-research-related-to-healthcare-in-developing-countries-I
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chap. 3, available at http://www.nap.edu/catalog/11903.html (accessed June 7, 2018); Ruth R. Faden,
Nancy E. Kass, Steven N. Goodman, Peter Pronovost, Sean Tunis, and Tom L. Beauchamp, “An Ethics
Framework for a Learning Healthcare System,” Hastings Center Report (Special Report) 43 (2013): S16–
S27; and Committee on the Learning Health Care System in America, Institute of Medicine (now National
Academy of Medicine) of the National Academies, Best Care at Lower Cost: The Path to Continuously
Learning Health Care in America, ed. Mark Smith, Robert Saunders, Leigh Stuckhardt, and J. Michael
McGinnis (Washington, DC: National Academies Press, 2013), available at
https://www.nap.edu/read/13444/chapter/1 (accessed June 25, 2018).
21. 21. For an ethical evaluation of Israel’s policy, see Jacob Lavee and Dan W. Brock, “Prioritizing
Registered Donors in Organ Allocation: An Ethical Appraisal of the Israeli Organ Transplant Law,”
Current Opinion in Critical Care 18, no. 6 (2012): 707–11. They assess the law to be basically sound but
in need of modification (especially priority for first-degree relatives). A defense of prioritizing registered
donors in allocation appears in Gil Siegal and Richard Bonnie, “Closing the Organ Donation Gap: A
Reciprocity-Based Social Contract Approach,” Journal of Law, Medicine & Ethics 34 (2006): 415–23. For
an analysis and assessment of the two models we have identified, see James F. Childress and Catharyn T.
Liverman, eds., Organ Donation: Opportunities for Action (Washington, DC: National Academies Press,
2006), pp. 253–59, which argues against both models “because of insuperable practical problems in
implementing them fairly” (p. 253).
22. 22. Epidemics, 1:11, in Hippocrates, vol. 1, ed. W. H. S. Jones (Cambridge, MA: Harvard University
Press, 1923), p. 165.
23. 23. See Tom L. Beauchamp, “The Concept of Paternalism in Biomedical Ethics,” Jahrbuch für
Wissenschaft und Ethik 14 (2010): 77–92, which presents the following alternative definition:
“Paternalism is the intentional overriding of one person’s autonomous choices or actions by another
person, where the person who overrides justifies the action by appeal to the goal of benefiting or of
preventing or mitigating harm to the person whose choices or actions are overridden.” Under this
definition, a person’s choices or actions must be substantially autonomous for an intervention to qualify as
paternalistic.
24. 24. See Donald VanDeVeer, Paternalistic Intervention: The Moral Bounds on Benevolence (Princeton, NJ:
Princeton University Press, 1986), pp. 16–40; John Kleinig, Paternalism (Totowa, NJ: Rowman &
Allanheld, 1983), pp. 6–14; and James F. Childress, Who Should Decide? Paternalism in Health Care
(New York: Oxford University Press, 1982). See also Childress, “Paternalism and Autonomy in Medical
Decision-Making,” in Frontiers in Medical Ethics: Applications in a Medical Setting, ed. Virginia
Abernethy (Cambridge, MA: Ballinger, 1980), pp. 27–41; and Childress, “Paternalism in Health Care and
Public Policy,” in Principles of Health Care Ethics, 2nd ed., ed., Richard E. Ashcroft, Angus Dawson,
Heather Draper, and John McMillan (Chichester, UK: John Wiley, 2007), pp. 223–31.
25. 25. This case is formulated on the basis of, and incorporates language from, Margaret A. Drickamer and
Mark S. Lachs, “Should Patients with Alzheimer’s Be Told Their Diagnosis?” New England Journal of
Medicine 326 (April 2, 1992): 947–51. For diagnostic guidelines for Alzheimer’s disease (updated in
January 2011), see the information provided by the National Institute of Aging at
https://www.nia.nih.gov/health/alzheimers-disease-diagnostic-guidelines (accessed June 7, 2018). Only an
autopsy after the patient’s death can provide a definitive diagnosis of Alzheimer’s disease.
26. 26. First introduced as the distinction between strong and weak paternalism by Joel Feinberg, “Legal
Paternalism,” Canadian Journal of Philosophy 1 (1971): 105–24, esp. pp. 113, 116. See, further, Feinberg,
Harm to Self, vol. 3 of The Moral Limits of the Criminal Law (New York: Oxford University Press, 1986),
esp. pp. 12ff.
27. 27. See Cass R. Sunstein and Richard H. Thaler, “Libertarian Paternalism Is Not an Oxymoron,”
University of Chicago Law Review 70 (Fall 2003): 1159–202; Thaler and Sunstein, Nudge: Improving
Decisions about Health, Wealth, and Happiness (New Haven, CT: Yale University Press, 2008); and
Sunstein, Why Nudge? The Politics of Libertarian Paternalism (New Haven, CT: Yale University Press,
2014).
28. 28. Erich H. Loewy, “In Defense of Paternalism,” Theoretical Medicine and Bioethics 26 (2005): 445–68.
29. 29. Childress, Who Should Decide? Paternalism in Health Care, p. 18.
30. 30. Sunstein and Thaler, “Libertarian Paternalism Is Not an Oxymoron,” p. 1159. See also Thaler and
Sunstein, “Libertarian Paternalism,” American Economics Review 93 (2003): 175–79.
http://www.nap.edu/catalog/11903.html
https://www.nap.edu/read/13444/chapter/1
https://www.nia.nih.gov/health/alzheimers-disease-diagnostic-guidelines
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31. 31. Christine Jolls and Cass R. Sunstein, “Debiasing through Law,” Journal of Legal Studies 33 (January
2006): 232.
32. 32. See Edward L. Glaeser, “Symposium: Homo Economicus, Homo Myopicus, and the Law and
Economics of Consumer Choice: Paternalism and Autonomy,” University of Chicago Law Review 73
(Winter 2006): 133–57. The work of Thaler and Sunstein has spawned a large body of both critical and
supportive literature. For a libertarian critique of their views on libertarian paternalism, see Richard A.
Epstein, “Libertarian Paternalism Is a Nice Phrase for Controlling People,” Federalist, 2018, available at
http://thefederalist.com/2018/04/26/libertarian-paternalism-nice-phrase-controlling-people/ (accessed
August 18, 2018). For criticisms of soft as well as hard paternalism, see Christopher Snowdon, Killjoys: A
Critique of Paternalism (London: Institute of Economic Affairs, 2017); Mark D. White, The Manipulation
of Choice: Ethics and Libertarian Paternalism (London: Palgrave Macmillan, 2013), which argues
“vehemently” against libertarian paternalism and nudges; and Sherzod Abdukadirov, ed., Nudge Theory in
Action: Behavioral Design in Policy and Markets (London: Palgrave Macmillan, 2016), which includes
several critical essays. Proponents include, in addition to the literature cited in other notes, Sigal R. Ben-
Porath, Tough Choices: Structured Paternalism and the Landscape of Choice (Princeton, NJ: Princeton
University Press, 2010); and Sarah Conly, Against Autonomy: Justifying Coercive Paternalism
(Cambridge: Cambridge University Press, 2013). Some collections of essays include both critics and
defenders: See Christian Coons and Michael Weber, eds., Paternalism: Theory and Practice (Cambridge:
Cambridge University Press, 2013); and I. Glenn Cohen, Holly Fernandez Lynch, and Christopher T.
Robertson, eds., Nudging Health: Health Law and Behavioral Economics (Baltimore, MD: Johns Hopkins
University Press, 2016).
33. 33. Ronald Bayer and Jennifer Stuber, “Tobacco Control, Stigma, and Public Health: Rethinking the
Relations,” American Journal of Public Health 96 (January 2006): 47–50; and Glaeser, “Symposium:
Homo Economicus, Homo Myopicus, and the Law and Economics of Consumer Choice,” pp. 152–53.
Stigmatization has emerged in efforts to reduce obesity, opioid abuse, and other harmful behaviors. For a
recognition of the legitimate role, within limits, of stigmatization in public health, see A. Courtwright,
“Stigmatization and Public Health Ethics,” Bioethics 27 (2013): 74–80; and Daniel Callahan, “Obesity:
Chasing an Elusive Epidemic,” Hastings Center Report 43, no. 1 (January–February 2013): 34–40. For a
rejection of stigmatization in campaigns against obesity because of its several negative impacts, see C. J.
Pausé, “Borderline: The Ethics of Fat Stigma in Public Health,” Journal of Law, Medicine & Ethics 45
(2017): 510–17.
34. 34. Bayer and Stuber, “Tobacco Control, Stigma, and Public Health: Rethinking the Relations,” p. 49.
35. 35. W. Kip Vicusi, “The New Cigarette Paternalism,” Regulation (Winter 2002–3): 58–64.
36. 36. For interpretations of (hard) paternalism as insult, disrespect, and treatment of individuals as unequals,
see Ronald Dworkin, Taking Rights Seriously (Cambridge, MA: Harvard University Press, 1978), pp.
262–63; and Childress, Who Should Decide? chap. 3.
37. 37. Gerald Dworkin, “Paternalism,” Monist 56 (1972): 65. See also Gerald Dworkin, “Paternalism,” in
The Stanford Encyclopedia of Philosophy (Winter 2017 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/win2017/entries/paternalism/ (accessed June 9, 2018).
38. 38. See Gerald Dworkin, “Paternalism,” Monist 56 (1972); and John Rawls, A Theory of Justice
(Cambridge, MA: Harvard University Press, 1971; rev. ed., 1999), pp. 209, 248–49 (1999: pp. 183–84,
218–20).
39. 39. Gerald Dworkin says, “The reasons which support paternalism are those which support any altruistic
action—the welfare of another person.” “Paternalism,” in Encyclopedia of Ethics, ed. Lawrence Becker
(New York: Garland, 1992), p. 940. For a variety of consent and nonconsent defenses of paternalism, see
Kleinig, Paternalism, pp. 38–73; and John Kultgen, Autonomy and Intervention: Paternalism in the
Caring Life: (New York: Oxford University Press, 1995), esp. chaps. 9, 11, 15.
40. 40. We take a constrained-balancing approach to the conflict between respect for autonomy and
beneficence to a particular person. Another approach could develop a specification of beneficence and
respect for autonomy that would rule out all hard paternalistic interventions. The specification could take
the following form: “When a person’s actions are substantially autonomous and create the risk of harm to
himself or herself, without imposing significant harms or burdens on others or the society, we should not
act paternalistically beyond the use of modest means such as persuasion.” Determining whether such a
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specification could be rendered coherent with our overall approach would require more attention than we
can devote here.
41. 41. See further our discussion of staged disclosure of information in Chapter 8, pp. 330–34.
42. 42. Deborah M. Stone, Thomas R. Simon, Katherine A. Fowler, et al., “Vital Signs: Trends in State
Suicide Rates—United States, 1999–2016 and Circumstances Contributing to Suicide—27 States, 2015,”
Morbidity and Mortality Weekly Report 67 (2018): 617–24, available at
http://dx.doi.org/10.15585/mmwr.mm6722a1 (accessed June 6, 2018).
43. 43. We do not here address philosophical problems surrounding the definition of suicide. On this matter,
see Tom L. Beauchamp, “Suicide,” in Matters of Life and Death, 3rd ed., ed. Tom Regan (New York:
Random House, 1993), esp. part 1; John Donnelly, ed., Suicide: Right or Wrong? (Buffalo, NY:
Prometheus Books, 1991), part 1; and Michael Cholbi, Suicide: The Philosophical Dimensions (Toronto:
Broadview Press, 2011), chap. 1. In Chapter 5 we examined reasons for not labeling physician-assisted
death, in which the patient performs the final act, as physician-assisted “suicide.”
44. 44. See James Rachels, “Barney Clark’s Key,” Hastings Center Report 13 (April 1983): 17–19, esp. 17.
45. 45. This case is presented in Marc Basson, ed., Rights and Responsibilities in Modern Medicine (New
York: Alan R. Liss, 1981), pp. 183–84.
46. 46. Glanville Williams, “Euthanasia,” Medico-Legal Journal 41 (1973): 27.
47. 47. See President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues
in Treatment Decisions (Washington, DC: US Government Printing Office, March 1983), p. 37.
48. 48. Betty Rollin, Last Wish (New York: Linden Press Simon & Schuster, 1985).
49. 49. Childress, Who Should Decide? chap. 1. See also Timothy E. Quill and Howard Brody, “Physician
Recommendations and Patient Autonomy: Finding a Balance between Physician Power and Patient
Choice,” Annals of Internal Medicine 125 (1996): 763–69; Allan S. Brett and Laurence B. McCullough,
“When Patients Request Specific Interventions: Defining the Limits of the Physician’s Obligation,” New
England Journal of Medicine 315 (November 20, 1986): 1347–51; and Brett and McCullough,
“Addressing Requests by Patients for Nonbeneficial Interventions,” JAMA: Journal of the American
Medical Association 307 (January 11, 2012): 149–50.
50. 50. We have adapted this case from “The Refusal to Sterilize: A Paternalistic Decision,” in Rights and
Responsibilities in Modern Medicine, ed. Basson, pp. 135–36.
51. 51. See Steven H. Miles, “Informed Demand for Non-Beneficial Medical Treatment,” New England
Journal of Medicine 325 (August 15, 1991): 512–15; and Ronald E. Cranford, “Helga Wanglie’s
Ventilator,” Hastings Center Report 21 (July–August 1991): 23–24.
52. 52. Catherine A. Marco and Gregory L. Larkin, “Case Studies in ‘Futility’—Challenges for Academic
Emergency Medicine,” Academic Emergency Medicine 7 (2000): 1147–51.
53. 53. See further Lawrence J. Schneiderman, Nancy S. Jecker, and Albert R. Jonsen, “The Abuse of
Futility,” Perspectives in Biology and Medicine 60 (2017): 295–313. For a rich international exploration
of concepts of and practices related to medical futility, see Alireza Bagheri, ed., Medical Futility: A Cross-
National Study (London: Imperial College Press, 2013).
54. 54. For a helpful introduction to risk, see Baruch Fischhoff and John Kadvany, Risk: A Very Short
Introduction (Oxford: Oxford University Press, 2011).
55. 55. See, for example, Charles Yoe, Primer on Risk Analysis: Decision Making under Uncertainty (Boca
Raton, FL: CRC Press, 2012). A fuller discussion appears in Yoe, Principles of Risk Analysis: Decision
Making under Uncertainty (Boca Raton, FL: CRC Press, 2012).
56. 56. See Sheila Jasanoff, “Acceptable Evidence in a Pluralistic Society,” in Acceptable Evidence: Science
and Values in Risk Management, ed. Deborah G. Mayo and Rachelle D. Hollander (New York: Oxford
University Press, 1991).
57. 57. See Richard Wilson and E. A. C. Crouch, “Risk Assessment and Comparisons: An Introduction,”
Science 236 (April 17, 1987): 267–70; Wilson and Crouch, Risk-Benefit Analysis (Cambridge, MA:
Harvard University Center for Risk Analysis, 2001); and Baruch Fischoff, “The Realities of Risk-Cost-
Benefit Analysis,” Science 350 (6260) (October 2015): 527, aaa6516-aaa651, available at
https://www.researchgate.net/publication/283330070_The_realities_of_risk-cost-benefit_analysis
(accessed July 14, 2018).
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58. 58. For a summary of this dispute—and a strongly stated argument in favor of the American Society
position—see Brian J. Morris, Jeffrey D. Klausner, John N. Krieger, et al., “Canadian Pediatrics Society
Position Statement on Newborn Circumcision: A Risk-Benefit Analysis Revisited,” Canadian Journal of
Urology 23, no. 5 (October 2016): 8495–502. This study performs its own risk-benefit analysis and claims
to be “more inclusive” than the Canadian Society study of 2015, which is assessed as “at odds with the
evidence” and as suffering from serious “errors in its risk-benefit analysis.” Of the six authors of this
study, two are from Canada and three from the United States. The first author is from Australia.
59. 59. Curt D. Burberg, Arthur A. Levin, Peter A. Gross, et al., “The FDA and Drug Safety,” Archives of
Internal Medicine 166 (October 9, 2006): 1938–42; and Alina Baciu, Kathleen Stratton, and Sheila P.
Burke, eds., The Future of Drug Safety: Promoting and Protecting the Health of the Public (Washington,
DC: National Academies Press, 2006).
60. 60. David A. Kessler, “Special Report: The Basis of the FDA’s Decision on Breast Implants,” New
England Journal of Medicine 326 (June 18, 1992): 1713–15. All references to Kessler’s views are to this
article.
61. 61. See Marcia Angell, “Breast Implants—Protection or Paternalism?” New England Journal of Medicine
326 (June 18, 1992): 1695–96. Angell’s criticisms also appear in her Science on Trial: The Clash of
Medical Evidence and the Law in the Breast Implant Case (New York: Norton, 1996). See also Jack C.
Fisher, Silicone on Trial: Breast Implants and the Politics of Risk (New York: Sager Group LLC, 2015),
which is sharply critical of the FDA’s early decisions.
62. 62. For reviews and evaluations of the scientific data, see E. C. Janowsky, L. L. Kupper, and B. S. Hulka,
“Meta-Analyses of the Relation between Silicone Breast Implants and the Risk of Connective Tissue
Diseases,” New England Journal of Medicine 342 (2000): 781–90; Silicone Gel Breast Implants: Report
of the Independent Review Group (Cambridge, MA: Jill Rogers Associates, 1998); and S. Bondurant, V.
Ernster, and R. Herdman, eds., Safety of Silicone Breast Implants (Washington, DC: National Academies
Press, 2000).
63. 63. “FDA Approves Silicone Gel-Filled Breast Implants after In-Depth Evaluation,” FDA News,
November 17, 2006. Since that time, the FDA has approved five silicone gel-filled breast implants. See
US Food and Drug Administration, Silicone Gel-Filled Breast Implants (with several links), updated
March 26, 2018, available at
https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/BreastImpla
nts/ucm063871.htm (accessed June 4, 2018).
64. 64. Center for Devices and Radiological Health, US Food and Drug Administration, FDA Update on the
Safety of Silicone Gel-Filled Breast Implants (June 2011), available at
http://www.fda.gov/downloads/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/B
reastImplants/UCM260090 (accessed June 4, 2018). Further controversy erupted in late 2018, when a
study of long-term outcomes in close to 100,000 women with breast implants found an association
between the implants and four health problems (melanoma and three auto-immune disorders). See
Christopher J. Coroneos, Jesse C. Selber, Anaeze C. Offodile et al., “US FDA Breast Implant
Postapproval Studies: Long-term Outcomes in 99,993 Patients,” Annals of Surgery 269, no. 1 (January
2019). See also Binita S. Ashar, “Assessing the Risks of Breast Implants and FDA’s Vision for the
National Breast Implant Registry,” Annals of Surgery 269, no. 1 (January 2019). While noting the study’s
methodological limitations, the FDA decided to convene a public meeting of its Medical Devices
Advisory Committee to address the issues. After this meeting in March 2019, the FDA decided not to ban
any breast implants but to ensure that more information about risks is available to prospective users,
including about the increased risk of breast implant-associated anaplastic large cell lymphoma, especially
in users of textured implants. Statement from FDA Principal Deputy Commissioner Amy Abernethy, M.D.,
Ph.D., and Jeff Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health on
FDA’s new efforts to protect women’s health and help to ensure the safety of breast implants, May 02,
2019. Available at https://www.fda.gov/news-events/press-announcements/statement-fda-principal-
deputy-commissioner-amy-abernethy-md-phd-and-jeff-shuren-md-jd-director-fdas (accessed May 15,
2019).
65. 65. National Academies of Sciences, Engineering, and Medicine, Pain Management and the Opioid
Epidemic: Balancing Societal and Individual Benefits and Risks of Prescription Opioid Use (Washington,
DC: National Academies Press, 2017). Our paragraphs on this subject draw heavily on this report. See
https://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/BreastImplants/ucm063871.htm
http://www.fda.gov/downloads/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/BreastImplants/UCM260090
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also National Institute on Drug Abuse, “Opioid Overdose Crisis,” as revised March 2018, available at
https://www.drugabuse.gov/drugs-abuse/opioids/opioid-overdose-crisis (accessed July 14, 2018); and
Owen Amos, “Why Opioids Are Such an American Problem,” BBC News, Washington DC, October 25,
2017, available at https://www.bbc.com/news/world-us-canada-41701718 (accessed July 14, 2018).
66. 66. National Academies of Sciences, Engineering, and Medicine, Pain Management and the Opioid
Epidemic, esp. chap. 6.
67. 67. See Paul Slovic, “Perception of Risk,” Science 236 (April 17, 1987): 280–85; and Slovic, The
Perception of Risk (London: Earthscan, 2000).
68. 68. See Cass Sunstein, Laws of Fear: Beyond the Precautionary Principle (Cambridge: Cambridge
University Press, 2005) and his Risk and Reason (Cambridge: Cambridge University Press, 2002).
69. 69. For defenses of the precautionary principle, see United Nations Educational, Scientific and Cultural
Organization (UNESCO), The Precautionary Principle (2005), available at
http://unesdoc.unesco.org/images/0013/001395/139578e (accessed June 4, 2018); Poul Harremoës,
David Gee, Malcolm MacGarvin, et al., The Precautionary Principle in the 20th Century: Late Lessons
from Early Warnings (London: Earthscan, 2002); Tim O’Riordan, James Cameron, and Andrew Jordan,
eds., Reinterpreting the Precautionary Principle (London: Earthscan, 2001); Carl Cranor, “Toward
Understanding Aspects of the Precautionary Principle,” Journal of Medicine and Philosophy 29 (June
2004): 259–79; and Elizabeth Fisher, Judith Jones, and René von Schomberg, eds., Implementing the
Precautionary Principle: Perspectives and Prospects (Northampton, MA: Edward Elgar, 2006). For
critical perspectives on the precautionary principle, see Sunstein, Laws of Fear: Beyond the Precautionary
Principle; H. Tristram Engelhardt, Jr., and Fabrice Jotterand, “The Precautionary Principle: A Dialectical
Reconsideration,” Journal of Medicine and Philosophy 29 (June 2004): 301–12; and Russell Powell,
“What’s the Harm? An Evolutionary Theoretical Critique of the Precautionary Principle,” Kennedy
Institute of Ethics Journal 20 (2010): 181–206.
70. 70. See P. Sandin, “Dimensions of the Precautionary Principle,” Human and Ecological Risk Assessment 5
(1999): 889–907.
71. 71. Sunstein, Laws of Fear: Beyond the Precautionary Principle. See also Engelhardt and Jotterand, “The
Precautionary Principle: A Dialectical Reconsideration”; and Søren Holm and John Harris, “Precautionary
Principle Stifles Discovery” (correspondence), Nature 400 (July 1999): 398.
72. 72. See Christian Munthe, The Price of Precaution and the Ethics of Risk (New York: Springer, 2011).
73. 73. Lauren Hartzell-Nichols proposes a variety of precautionary principles rather than the precautionary
principle. See “From ‘the’ Precautionary Principle to Precautionary Principles,” Ethics, Policy &
Environment 16 (2013): 308–20. We find the language of precautionary approach or precautionary process
more fruitful.
74. 74. Cf. Cass Sunstein, Laws of Fear: Beyond the Precautionary Principle; and Richard A. Posner,
Catastrophe: Risk and Response (New York: Oxford University Press, 2004).
75. 75. Christian Munthe, The Price of Precaution and the Ethics of Risk, p. 164. See also the review of this
book by Lauren Hartzell-Nichols, “The Price of Precaution and the Ethics of Risk,” Ethics, Policy &
Environment 17 (2014): 116–18. While holding onto the precautionary principle as a normative principle
for disproportionate threats (in contrast to manageable risks), Alan Randall incorporates the principle into
a responsible strategy of risk management. See Randall, Risk and Precaution (Cambridge: Cambridge
University Press, 2011), esp. chaps. 12 and 13.
76. 76. See several chapters in O’Riordan, Cameron, and Jordan, eds., Reinterpreting the Precautionary
Principle. See also the recent debate about blood transfusion risks in the American Journal of Bioethics
(AJOB) 17, no. 3 (March, 2017): 32–59. The target article by Koen Kramer, Hans L. Zaaijer, and Marcel
F. Verweij, “The Precautionary Principle and the Tolerability of Blood Transfusion Risks” (pp. 32–43)
develops three constraints on any precautionary principle: consistency, avoiding counterproductivity, and
proportionality. Among the several responses, Anthony Vernillo’s “The Precautionary Petard: Who Should
Tolerate Blood Transfusion Risks?” (pp. 54–55) takes a perspective similar to ours.
77. 77. See Jonathan Zander, The Application of the Precautionary Principle in Practice: Comparative
Dimensions (New York: Cambridge University Press, 2010), which notes variations in the application of
the precautionary principle in Europe, as well as in the United States. The Reality of Precaution:
Comparing Risk Regulation in the United States and Europe, ed. Jonathan B. Wiener et al. (New York:
Routledge, 2010) also challenges the claim that Europe is more precautionary than the United States.
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78. 78. Some examinations of analytic methods include cost-utility analysis (CUA), as distinguished from
CEA, while other discussions, particularly in the United States, treat CUA as a variant of CEA, as we do.
Both of the following books follow the latter convention: Michael F. Drummond, Mark J. Sculpher, Karl
Claxton, Greg L. Stoddart, and George W. Torrance, Methods for the Economic Evaluation of Health Care
Programmes, 4th ed. (New York: Oxford University Press, 2015); and Peter J. Neumann, Gillian D.
Sanders, Louise B. Russell, Joanna E. Siegel, and Theodore G. Ganiats, eds., Cost-Effectiveness in Health
and Medicine, 2nd ed. (New York: Oxford University Press, 2017).
79. 79. Our description of these analytic techniques draws on Neumann, Sanders, Russell, Siegel, and Ganiats,
eds., Cost-Effectiveness in Health and Medicine, 2nd ed. (and the earlier edition); and Wilhelmine Miller,
Lisa A. Robinson, and Robert S. Lawrence, eds., Valuing Health for Regulatory Effectiveness Analysis
(Washington, DC: National Academies Press, 2006). See also Peter J. Neumann, Using Cost-Effectiveness
Analysis to Improve Health Care: Opportunities and Barriers (New York: Oxford University Press, 2005).
Attention to comparative effectiveness analysis in the United States appears, in part, to be an attempt to
avoid facing the trade-offs between costs, on the one hand, and effectiveness and benefits, on the other.
See Uwe E. Reinhardt, “‘Cost-Effectiveness Analysis’ and U.S. Health Care,” New York Times, March 13,
2009, available at https://economix.blogs.nytimes.com/2009/03/13/cost-effectiveness-analysis-and-us-
health-care/ (accessed July 14, 2018).
80. 80. On this now classic example, see Duncan Neuhauser and Ann M. Lewicki, “What Do We Gain from
the Sixth Stool Guaiac?” New England Journal of Medicine 293 (July 31, 1975): 226–28. See also
“American Cancer Society Report on the Cancer-Related Checkup,” CA—A Cancer Journal for Clinicians
30 (1980): 193–240, which recommended the full set of six guaiac tests.
81. 81. See Emma McIntosh et al., “Applied Cost-Benefit Analysis in Health Care: An Empirical Application
in Spinal Surgery,” in Applied Methods of Cost-Benefit Analysis in Health Care, ed. Emma McIntosh et al.
(New York: Oxford University Press, 2010), pp. 139–57, esp. 153–54, which focuses on one type of
willingness to pay in the context of spinal surgery.
82. 82. For an illuminating analysis and defense of valuing life (or valuing statistical life), properly qualified,
in public regulation, see Cass R. Sunstein, Valuing Life: Humanizing the Regulatory State (Chicago:
University of Chicago Press, 2014), esp. chaps. 4 and 5.
83. 83. For a philosophical critique of CBA, see Elizabeth Anderson, Values in Ethics and Economics
(Cambridge, MA: Harvard University Press, 1993), esp. chap. 9; Matthew D. Adler, Well-Being and Fair
Distribution: Beyond Cost-Benefit Analysis (New York: Oxford University Press, 2012), esp. pp. 88–114;
and Peter A. Ubel, Pricing Life: Why It’s Time for Health Care Rationing (Cambridge, MA: MIT Press,
2000), esp. p. 68.
84. 84. See Miller, Robinson, and Lawrence, eds., Valuing Health for Regulatory Cost-Effectiveness Analysis.
For an examination and a call for further clarification of different types of measures, see Marthe R. Gold,
David Stevenson, and Dennis G. Fryback, “HALYs and QALYs and DALYs, Oh My: Similarities and
Differences in Summary Measures of Population Health,” Annual Review of Public Health 23 (2002):
115–34. For a critical examination of disability-adjusted life years (DALYs), see Sudhir Anand and Kara
Hanson, “Disability-Adjusted Life Years: A Critical Review,” in Public Health, Ethics, and Equity, ed.
Sudhir Anand, Fabienne Peter, and Amartya Sen (Oxford: Oxford University Press, 2004), chap. 9.
85. 85. National Institute for Health and Clinical Excellence, Social Value Judgements: Principles for the
Development of NICE Guidance, 2nd ed. (2008), p. 35, available at
https://www.nice.org.uk/media/default/about/what-we-do/research-and-development/social-value-
judgements-principles-for-the-development-of-nice-guidance (accessed June 7, 2018).
86. 86. Alan Williams, “The Importance of Quality of Life in Policy Decisions,” in Quality of Life:
Assessment and Application, ed. Stuart R. Walker and Rachel M. Rosser (Boston: MTP Press, 1988), p.
285.
87. 87. See Erik Nord, Cost-Value Analysis in Health Care: Making Sense out of QALYs (Cambridge:
Cambridge University Press, 1999), passim; and Neumann, Sanders, Russell, Siegel, and Ganiats, eds.,
Cost-Effectiveness in Health and Medicine, 2nd ed., passim.
88. 88. See David Eddy, “Cost-Effectiveness Analysis: Is It Up to the Task?” Journal of the American
Medical Association 267 (June 24, 1992): 3344. On “conventional” QALYs, see Milton C. Weinstein,
George Torrance, and Alastair McGuire, “QALYs: The Basics,” Value in Health 12, Supplement 1 (2009):
S5–S9.
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89. 89. Alan Williams, “Economics of Coronary Artery Bypass Grafting,” British Medical Journal 291
(August 3, 1985): 326–29. See also M. C. Weinstein and W. B. Stason, “Cost-Effectiveness of Coronary
Artery Bypass Surgery,” Circulation 66, Suppl. 5, pt. 2 (1982): III, 56–66. On the nature of and guidelines
for coronary artery bypass graft surgery, see Kim A. Eagle, Robert A. Guyton, Ravin Davidoff, et al.,
“ACC/AHA 2004 Guideline Update for Coronary Artery Bypass Graft Surgery: A Report of the American
College of Cardiology/American Heart Association Task Force on Practice Guidelines,” Circulation 110
(2004), available at http://circ.ahajournals.org/content/circulationaha/110/14/e340.full (accessed July
13, 2018).
90. 90. See Paul Menzel, Marthe R. Gold, Erik Nord, et al., “Toward a Broader View of Values in Cost-
Effectiveness Analysis of Health,” Hastings Center Report 29 (May–June 1999): 7–15. For a defense of
the utilitarian perspective of CEA and QALYs, see John McKie, Jeff Richardson, and Helga Kuhse, The
Allocation of Health Care Resources: An Ethical Evaluation of the ‘QALY’ Approach (Aldershot,
England: Ashgate, 1998). See also Joshua Cohen, “Preferences, Needs and QALYs,” Journal of Medical
Ethics 22 (1996): 267–72; Dan W. Brock, “Ethical Issues in the Use of Cost Effectiveness Analysis for the
Prioritisation of Health Care Resources,” in Public Health, Ethics, and Equity, ed. Peter Anand and
Amartya Sen, chap. 10; Madison Powers and Ruth Faden, Social Justice: The Moral Foundations of
Public Health and Health Policy (New York: Oxford University Press, 2006), chap. 6; and Powers and
Faden, Structural Injustice: Power, Advantage, and Human Rights (New York: Oxford University Press,
2019).
91. 91. Gavin Mooney, “QALYs: Are They Enough? A Health Economist’s Perspective,” Journal of Medical
Ethics 15 (1989): 148–52.
92. 92. Alan Williams, “The Importance of Quality of Life in Policy Decisions,” in Quality of Life, ed. Walker
and Rosser, p. 286; and Williams, “Economics, QALYs and Medical Ethics—A Health Economist’s
Perspective,” Health Care Analysis 3 (1995): 221–26.
93. 93. Some proposals to modify or limit QALY-based CEA by societal values would require even a lower
weighting for the elderly, in line with dominant critical social values. See, for example, Nord, Cost-Value
Analysis in Health Care; Menzel et al., “Toward a Broader View of Values in Cost-Effectiveness Analysis
of Health”; and Ubel, Pricing Life.
94. 94. For these and other equity concerns, see Dan W. Brock, Norman Daniels, Peter J. Neumann, and
Joanna E. Siegel, “Ethical and Distributive Considerations,” in Cost-Effectiveness in Health and Medicine,
2nd ed., ed. Neumann, Sanders, Russell, Siegel, and Ganiats, pp. 319–341; Erik Nord, Norman Daniels,
and Mark Kamlet, “QALYs: Some Challenges,” Value in Health 12, Supplement 1 (2009): S10–15; Erik
Nord, “Some Ethical Corrections to Valuing Health Programs in Terms of Quality-Adjusted Life Years
(QALYs),” AMA Journal of Ethics, Virtual Mentor, 7, no. 2 (February 2005). For an effort to calibrate
QALYs to ensure the equality of persons with disabilities, see Donald Franklin, “Calibrating QALYs to
Respect Equality of Persons,” Utilitas 29, no. 1 (March 2017): 65–87.
95. 95. See the careful and qualified framework surrounding the use of QALYs by NICE, Social Value
Judgements, sections 3–4, 7–8, esp. 4.2. John Harris argues that QALYs are a “life-threatening device,”
because they suggest that life-years rather than individual lives are valuable. “QALYfying the Value of
Life,” Journal of Medical Ethics 13 (1987): 117–23. See also Peter Singer, John McKie, Helga Kuhse, and
Jeff Richardson, “Double Jeopardy and the Use of QALYs in Health Care Allocation,” Journal of Medical
Ethics 21 (1995): 144–50; John Harris, “Double Jeopardy and the Veil of Ignorance—A Reply,” Journal
of Medical Ethics 21 (1995): 151–57; John McKie, Helga Kuhse, Jeff Richardson, and Peter Singer,
“Double Jeopardy, the Equal Value of Lives and the Veil of Ignorance: A Rejoinder to Harris,” Journal of
Medical Ethics 22 (1996): 204–8.
96. 96. David C. Hadorn, “Setting Health Care Priorities in Oregon: Cost-Effectiveness Meets the Rule of
Rescue,” Journal of the American Medical Association 265 (May 1, 1991): 2218; and David C. Hadorn,
“The Oregon Priority-setting Exercise: Cost-Effectiveness and the Rule of Rescue, Revisited,” Medical
Decision Making 16 (1996): 117–19. See, further, Peter Ubel, George Loewenstein, Dennis Scanlon, and
Mark Kamlet, “Individual Utilities Are Inconsistent with Rationing Choices: A Partial Explanation of
Why Oregon’s Cost-Effectiveness List Failed,” Medical Decision Making 16 (1996): 108–16; and John
McKie and Jeff Richardson, “The Rule of Rescue,” Social Science & Medicine 56 (2003): 2407–19. We
return to the Oregon experiment in Chapter 7, pp. 301–2.
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97. 97. See Erik Nord, “Cost-Value Analysis of Health Interventions: Introduction and Update on Methods
and Preference Data,” PharmacoEconomics 33 (2015): 89–95; and Brock, Daniels, Neumann, and Siegel,
“Ethical and Distributive Considerations.”
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7
Justice
In “The Lottery in Babylon,” Jorge Luis Borges depicts a society that distributes all social benefits and burdens
solely on the basis of a periodic lottery. Each person is assigned a social role such as slave, factory owner, priest,
or executioner, purely by the lottery. This random selection system disregards criteria of distribution such as
achievement, education, merit, experience, contribution, need, deprivation, and effort. The ethical and political
oddity of the system described in Borges’s story is jolting because assigning positions in this way fails to cohere
with conventional conceptions and principles of justice. Borges’s system appears capricious and unfair, because
we expect valid moral principles to determine how social burdens, benefits, opportunities, and positions ought to
be distributed.1
However, attempts to specify principles of justice for the many contexts of the distribution of health care and
public health measures have often proved as inconclusive as the lottery method seems capricious. The
construction of a unified theory of justice that captures our diverse conceptions and principles of justice in
biomedical ethics continues to be controversial and difficult to pin down.
We start to work on these problems in this chapter by analyzing the terms justice and distributive justice. We
then examine several general theories of justice pertinent to the distribution of health care. Later we examine
problems of national and international health policy and consider enduring problems of social justice, including
the nature of fair opportunity and unfair discrimination in health care, issues of vulnerability and exploitation of
human subjects in research, the defensibility of the claim that we have both a right to health care and a right to
health, several problems of global justice, the place of allocation and priority setting in health policy, and proper
criteria of rationing health care in circumstances of scarcity.
THE CONCEPT OF JUSTICE AND PRINCIPLES OF JUSTICE
The terms fairness, desert (what is deserved), and entitlement have been used by philosophers as a basis on
which to explicate the term justice. These accounts interpret justice as fair, equitable, and appropriate treatment
in light of what is due or owed to affected individuals and groups. The term distributive justice refers to fair,
equitable, and appropriate distribution of benefits and burdens determined by norms that structure the terms of
social cooperation.2 Its scope includes policies that allot benefits and burdens such as property, resources,
taxation, privileges, opportunities, food distribution, jury service, and service as a research subject.
A compelling example of difficulties in determining the scope of distributive justice appears in the recent history
of research involving human subjects. Until the 1990s, the paradigm problem in ethical assessment of research
was the risks and burdens of research and the need to protect subjects from harm, abuse, and exploitation,
especially when research offers no prospect of direct therapeutic benefit to the subjects and unfairly burdens a
specific class of subjects. However, a paradigm shift occurred in the 1990s, in part because of the interest of
patients with HIV/AIDS in gaining expanded access to new, experimental drugs both within and outside of
clinical trials. The focus shifted to the possible benefits of clinical trials. As a result, justice as fair access to
research—both participation in research and access to the results of research—became as important as protection
from harm and exploitation.3 (See further our discussion of programs and policies of expanded access and
continued access to investigational [experimental] products such as drugs and medical devices in Chapter 6, pp.
224–27.)
No single moral principle is capable of addressing all problems of justice. Accordingly, in this chapter we
discuss several principles of justice and consider how they can be balanced and specified in contexts of health
care and public health. We argue that conditions of scarcity sometimes force a society to make tragic choices,
and in the process, even valid principles of justice may be justifiably infringed, compromised, or sacrificed.4
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We start first with a basic formal principle and then turn to principles that have been proposed as material
principles, that is, substantive principles of justice.
The Formal Principle of Justice
Common to all theories of justice is a minimal requirement traditionally attributed to Aristotle: Equals must be
treated equally, and unequals must be treated unequally. This principle of formal justice—sometimes called the
principle of formal equality—is “formal” because it identifies no particular respects in which equals ought to be
treated equally and provides no criteria for determining whether two or more individuals are in fact equals. It
merely asserts that persons equal in whichever respects are relevant should be treated equally.
This formal principle lacks all substance. That equals ought to be treated equally provokes no debate, but
significant problems surround judgments about what constitutes an equal and which differences are relevant in
comparing individuals or groups. As a matter of human rights (see our account of rights in Chapter 9, pp. 400–
9), all citizens in a political state should have equal political rights, equal access to public services, and equal
treatment under the law, but how far do such principles of equality extend? Consider the following situation:
Virtually all accounts of justice in health care hold that delivery programs and services designed to assist persons
of a certain class, such as the poor, the elderly, pregnant women, children, and the disabled, should be made
available to all members of that class. To deny benefits to some when others in the same class receive benefits is
unjust, but is it also unjust to deny access to equally needy persons outside the delineated class, such as workers
with no health insurance? How do we determine which classes, if any, should be designated? Answers require
material principles of justice.
Material Principles of Justice and Morally Relevant Properties of Persons
Principles that specify the relevant characteristics for equal treatment are material because they identify the
substantive properties for distribution. A relatively simple example is the principle of need, which dictates that
essential social resources, including health care, should be distributed according to need. To say that a person
needs something is to say that, without it, that person will suffer a harm, or at least be detrimentally affected.
However, we are not required to distribute all goods and services to satisfy all needs, such as needs for athletic
equipment and cell phones. Presumably our obligations are limited to fundamental needs for essential resources.
To say that someone has a fundamental need is to say that the person will be harmed or detrimentally affected in
a fundamental way if the need is not met. For example, the person might be harmed through malnutrition, bodily
injury, or nondisclosure of critical information. (See our discussion of harm in Chapter 5, pp. 158–59.)
If we were to analyze the notion of fundamental needs further, we could progressively specify and shape the
material principle of need into a public policy for purposes of distribution—for example, a public policy
regarding who has a right of access to emergency rooms in hospitals, who may and who may not be on a list for
an organ transplant, and the like. For the moment, however, we are emphasizing only the significance of
accepting a principle of need as a valid material principle of justice. This principle is only one among several
plausible material principles of justice. If, by contrast, one were to accept only a principle of free-market
distribution as a valid principle of justice, then one would oppose a principle of need as a basis for public policy.
All public and institutional policies based on distributive justice ultimately derive from the acceptance or
rejection of some set of material principles and some procedures for specifying, refining, or balancing them; but
determining precisely which principles are valid in which contexts continues to be a major problem for both
theories of justice and public policy.
Material principles identify morally relevant properties that persons must possess to qualify for particular
distributions, but theoretical and practical difficulties confront the justification of allegedly relevant properties.
Tradition, convention, and moral and legal principles point to relevant properties in some cases, but it is often
appropriate either to institute a new policy that establishes relevant properties where none previously existed or
to revise entrenched criteria. For example, nation-states need to establish a policy about whether residents who
are noncitizens will be allowed on waiting lists for transplants of deceased donor organs. The government must
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decide whether citizenship is a relevant property and, if so, on which basis, in which ways, and with which
exceptions.
Courts have sometimes mandated policies that revise entrenched notions about morally relevant properties. For
example, the United States Supreme Court decided in the case of Auto Workers v. Johnson Controls, Inc.5 that
employers cannot legally adopt “fetal protection policies” that specifically exclude women of childbearing age
from a hazardous workplace, because these policies unfairly discriminate based on the morally irrelevant
property of gender. Under the policy that was challenged, fertile men could choose whether they wished to
assume reproductive risks, whereas fertile women could not. The majority of justices held that this policy used
the irrelevant property of gender despite the fact that mutagenic substances affect sperm as well as eggs.
Material Principles in Theories of Justice
Material principles are essential components of general theories of justice. We will introduce problems of
distributive justice using this approach, turning first to what we call four traditional theories. We then consider
two theories that attend closely to the value of health and health care in a theory of justice. Our main interest in
examining these six theories is to call attention to various general principles that help us think through problems
of justice in different contexts of biomedical ethics.
The four traditional theories are (1) Utilitarian theories, which emphasize a mixture of criteria for the purpose of
increasing or maximizing human welfare and public utility; (2) libertarian theories, which emphasize individual
rights to social and economic liberty, while invoking fair procedures as the basis of justice rather than
substantive outcomes such as increases of welfare; (3) communitarian theories, which underscore principles of
justice derived from conceptions of the good developed in moral communities; and (4) egalitarian theories,
which emphasize equal access to the goods in life that every rational person values, often invoking material
criteria of need and equality. The two theories specifically concerned with the value of health in the theory of
justice are (5) capability theories, which identify capabilities such as the capability to be healthy that are
essential for a flourishing life and identify ways social institutions can and should protect and promote
capabilities; and (6) well-being theories, which emphasize core dimensions of human welfare and what is
required nationally and globally to realize them.
Each of these six theories articulates a general, notably abstract, material principle of distributive justice:
1. 1. To each person according to rules and actions that maximize social utility (utilitarianism)
2. 2. To each person a maximum of liberty and property resulting from the exercise of liberty rights and
participation in fair free-market exchanges (libertarianism)
3. 3. To each person according to principles of fair distribution derived from conceptions of the good
developed in moral communities (communitarianism)
4. 4. To each person an equal measure of liberty and equal access to the goods in life that every rational
person values (egalitarianism)
5. 5. To each person the means necessary for the exercise of capabilities essential for a flourishing life
(capability theories)
6. 6. To each person the means necessary for the realization of core elements of well-being (well-being
theories)
No obvious barrier prevents acceptance of more than one of these principles as valid—perhaps all six—in a
pluralistic theory of justice. However, these principles are considered competitive in much of the literature on
general theories of justice. To retain all six, one would have to argue that each of these material principles
identifies a prima facie obligation whose weight cannot be assessed independently of particular goods and
domains in which they are applicable, and then one would have to show how these principles can be rendered
coherent in a pluralistic theory of justice.
Many and perhaps most societies invoke more than one of these material principles in framing public policies
for different contexts. For example, the resources available for public health programs and for women’s and
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children’s health programs are often distributed on the basis of either social utility or individual need to have a
state of health protected or restored. Salaries and the higher incomes of some persons are sometimes allowed and
even encouraged on grounds of free-market wage exchanges and competition. The resources needed for a basic
education, for overcoming poverty, and for a decent level of health care are often distributed either equally to all
citizens or as needed for citizens to achieve a basic level of well-being; and jobs and promotions in many sectors
are awarded on the basis of demonstrated achievement and merit, as assessed by criteria in particular
communities.
TRADITIONAL THEORIES OF JUSTICE
Theories of distributive justice link the morally relevant properties of persons to morally justifiable distributions
of social benefits and burdens. By the last quarter of the twentieth century it became clear that the four
traditional theories we will now examine had emerged as the most widely discussed theories of justice. We do
not suggest that these theories are of equal importance, and we make no attempt to rank one over the others. In
referring to them as “traditional,” we are not signaling that they have a lower status, as if they were merely a
matter of tradition and not currently defensible. Egalitarianism—the third theory—has been widely discussed
and has probably become the most influential type of theory in philosophy over the last few decades. It remains
the starting point for a great many writers on distributive justice. Egalitarianism is also the logical transition
point from “traditional” theories to the more recent theories that we treat in the following section, because the
commitment to proper distributions of health care and health programs in these recent theories show a
significant egalitarian influence.
Utilitarian Theories
Utilitarian theories, which rose to prominence in the nineteenth century at the hands of John Stuart Mill and
Jeremy Bentham, are treated as general moral theories in Chapter 9 (pp. 388–94). Principles of distributive
justice, in particular, are presented in utilitarian theories as among several principles and rules that maximize
utility or welfare. In this theory, any standard or rule of justice must be grounded in the principle of utility, which
requires that we seek to produce the maximal balance of positive value over disvalue—or the least possible
disvalue, if only undesirable results can be achieved.
Mill maintained that justice is the name for the paramount and most stringent forms of obligation fixed by the
principle of utility.6 However, the idea of maximizing utility is imprecise and has led to issues regarding which
welfare functions should be maximized. In effect, all health benefits stand to improve welfare—for example,
nutritious foods, clean water, hygiene, annual medical physical examinations, and public health measures. A
utilitarian with a practical account of justice will explain how welfare is to be understood and how to weight
conditions of welfare in the system.
Typically, utilitarian obligations of justice establish correlative rights for individuals that should be enforced by
law (see our account of the correlativity of rights and obligations in Chapter 9, pp. 405–6). These rights are
strictly contingent upon social arrangements that maximize net social utility. Human rights and principles of
obligation have no other basis in this theory than utility maximization. Disputes abound among utilitarians as to
whether rights have a meaningful place in utilitarian theory, but if a system of rights such as an international
code of the rights of research subjects is justified entirely on the grounds that its existence will maximize social
utility, utilitarians have no clear way to object to this defense of the rights.
However, as even many utilitarians point out, moral problems surround the use of utilitarian principles to justify
rights such as the right to health care and the rights of human subjects. Rights grounded in justice could be
viewed as having a tenuous foundation when they rest on overall utility maximization, because the balance of
social utility could change at any time, and then the rights would also change. One coherent utilitarian outlook is
that as conditions of social utility change, so the range of protected rights may change. For example, legal rights
to health care in the United States have been limited to a few populations, notably the poor, the elderly, and
military veterans; but conditions of social utility could shift so that a society has an obligation—flowing from
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the principle of utility—to provide every citizen with a decent level of health care, which would be tantamount
to conferring a right to health care for utilitarian reasons.
Although utilitarian theories face serious challenges as general theories of justice, the goal of maximizing social
utility can be helpful in formulating just health policies in publicly supported institutions, especially when the
policies are formulated using sensible cost-benefit or risk-benefit analysis, as we note later in this chapter and
also in Chapter 6 (see pp. 243–52).
Libertarian Theories
Libertarian theories, as moral theories, date at least to early modern conceptions of natural rights, perhaps most
notably to passages in John Locke’s philosophy, which recognizes “just and natural rights” to liberty.7 These
theories are both general moral accounts and accounts of justice because they state the general duties that all
members of society owe to one another, usually conceived as duties to respect liberty and to enforce individual
liberty rights by coercive power when necessary. A libertarian interpretation of justice focuses not on public
utility or on acting to meet the health and welfare needs of citizens, but on the unfettered operation of fair
procedures and transactions under conditions of law and order.
Robert Nozick’s work has for several decades been the most sophisticated and influential libertarian
philosophical theory. He argues for a theory of justice in which government action is justified if and only if it
protects citizens’ liberty and property rights.8 This theory of justice affirms individual liberty rights rather than a
system that creates patterns of distribution in which governments collect taxes and redistribute the wealth
originally acquired by persons in the free market. Governments act coercively and unjustly when they tax the
wealthy at a progressively higher rate than the rate imposed on those who are less wealthy and then use the
proceeds to underwrite state support of the indigent through welfare payments and unemployment
compensation.
Nozick proposes three and only three principles of justice, all centered on private property rights: justice in
acquisition, justice in transfer, and justice in rectification. No pattern of just distribution exists independent of
free-market procedures of acquiring property, legitimately transferring that property, and providing rectification
for those whose property was illegitimately taken or who otherwise were illegitimately obstructed in the free
market. In this theory justice consists in the operation of just procedures, not in the production of just outcomes
such as an equal distribution of health resources. The theory recognizes no fundamental welfare rights, and
therefore no rights or justified claims to health or to health care can be based on justice. However, libertarians do
not oppose utilitarian or egalitarian patterns of distribution if these patterns are freely chosen by all participants
affected. Any distribution of goods, including public health measures and health care, is just and justified if and
only if individuals in the relevant community freely choose it as public policy.
United States public policy has traditionally accepted a system that approximates a libertarian ideal according to
which distributions of health insurance and health care are best left to a material principle of ability to pay for
insurance and medical care, supplemented by voluntary charitable acts, institutions such as charitable hospitals,
and employer-funded health insurance. Under this conception, a just society protects rights of property and
liberty, allowing all persons the freedom to improve their circumstances and protect their health on their own
initiative. Health care is not a right, the ideal system of health insurance is privatized, and charitable care
institutions are nonprofit and untaxed.
Egalitarian Theories
Egalitarian theories have a history at least as old as religious traditions holding that all humans must be treated
as equals because they are created as equals and have equal moral status. In moral and political philosophy, at
least since Locke and other seventeenth-century writers, egalitarian thought has had a large presence. These
theories explicate the idea of equality in terms of treating persons as equals in certain respects. No prominent
egalitarian theory has contained a distributive principle that requires equal sharing of all social benefits and
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burdens to all persons. The dominant egalitarian theories identify basic equalities for all persons while
permitting some inequalities.
Rawls’s celebrated egalitarian theory holds that “what justifies a conception of justice is not its being true to an
order antecedent and given to us, but its congruence with our deeper understanding of ourselves and our
aspirations.”9 In Rawls’s account a theory of justice starts with considered judgments of equal respect for
persons and fairness, which are specified in the theory to establish principles of justice. He argues that impartial
persons would agree on two fundamental principles. The first principle requires that each person be permitted
the maximum amount of basic liberty compatible with a similar measure of liberty for others. The second
principle requires that social inequalities allowed in a theory must satisfy two conditions: (1) the first condition
stipulates that inequalities in social primary goods (including, for example, inequalities in income, rights, and
opportunities) are allowable, but only if allowing these inequalities benefits everyone (“the difference
principle”); (2) the second condition requires that social offices and positions be open to all under circumstances
of fair equality of opportunity (a fair opportunity principle, as we treat it later in this chapter on pp. 282–86).10
Rawls considers nations and social institutions just (in liberal nation-states) if and only if they conform to each
of these basic principles. He neither states how large the inequalities in income, rights, and opportunities might
be nor speculates about how much better off the least advantaged must be under the difference principle. This
position leaves uncertain how far the difference principle pushes in the direction of allowing inequalities, a
tricky challenge for Rawlsians.
Although Rawls never pursued the implications of his theory for health policy in particular, others have done so.
In an influential interpretation and extension, Norman Daniels argues for a just health care system based
primarily on these principles, with a special emphasis on what Rawls called “fair equality of opportunity.”
Daniels sees health care needs as special and maintains that fair opportunity is central to any acceptable theory
of justice. Social institutions affecting health care distribution should be arranged, insofar as possible, to allow
each person to achieve a fair share of the normal range of opportunities present in that society.
Daniels’s theory, like Rawls’s, recognizes a positive societal obligation to reduce or eliminate barriers that
prevent or reduce fair equality of opportunity, an obligation that extends to programs to correct or compensate
for disadvantages. Daniels views disease and disability as undeserved restrictions on persons’ opportunities to
realize basic goals. Health care is needed to achieve, maintain, or restore adequate or “species-typical” levels of
functioning so that individuals can realize basic goals. A health care system designed to meet these needs should
be structured to prevent disease, illness, or injury from reducing the range of opportunity open to individuals;
and the allocation of health care resources should be structured to ensure justice through fair equality of
opportunity.11
This Rawls-inspired theory has far-reaching egalitarian implications for national health policies and perhaps for
international health policies as well: Each member of society, irrespective of wealth or position, has equal access
to an adequate, although not maximal, level of health care—the exact level of access being contingent on
available social resources and public processes of decision making.
Communitarian Theories
So-called communitarian theories of justice can and have laid claim to traditions traceable to Aristotle and
possibly to philosophers as different as Georg Wilhelm Friedrich Hegel and David Hume. However, only a small
number of philosophers have self-identified as “communitarian,” a label that collects a variety of theories
focused on the relationship between individuals and their social embeddedness in communities, especially in the
way communities shape individuals and construct their roles. What unites these theories under the somewhat
artificial label of “communitarianism” (artificial since several leading “proponents” of this theory typically do
not use, and some even reject, this label in their writings12) is the respect for and high value placed on the moral
and political commitments found in communities and their traditions and practices. Individualism and individual
rights that disrupt community goals have no place—or at least a radically reduced place—in these theories.
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In recent forms, these theories critically react to “liberal theories of justice” such as those of Mill and Rawls,
and, somewhat secondarily, to the libertarian theories of Nozick and others. Rawls’s so-called political liberalism
has been a special target of communitarian writers, who see societies constructed on these liberal foundations as
lacking in a commitment to the general welfare, to common purposes, and to education in citizenship. Social
conventions, traditions, loyalties, and the social nature of life and institutions figure prominently in many
communitarian theories.13 These theories particularly reject claims of the priority of the individual over the
common good. Charles Taylor’s challenge is straightforward: He argues that claims of the priority of individual
rights over communal decision making are premised on a conception of the human good (e.g., the good of
autonomous moral agency), as if individuals are isolated atoms existing independently of communities. Any
theory of the place of autonomy that suggests a strong sense of independence, Taylor argues, is unacceptable if
developed in the absence of the family and other community structures and interests.14
Communitarians see principles of justice as pluralistic, deriving from as many different conceptions of the good
as there are diverse moral communities. What is owed to individuals and groups depends on community-derived
standards.15 As an example of communitarians’ promotion of the common good in biomedical ethics, consider
their difference from libertarians and others about policies for obtaining organs for transplantation from
deceased persons. Based on principles of individual rights, all states in the United States adopted the Uniform
Anatomical Gift Act in the late 1960s and early 1970s. This act gives individuals the right to donate their organs
after death or to oppose donation, thereby blocking any possible familial decision to donate. However, if the
decedent did not explicitly say “no” to donation, the next of kin then has the right to donate the decedent’s
organs.
Some communitarians challenge whether the individual’s right to donate voluntarily is the primary
consideration. A robust communitarian policy supports the routine removal of organs in the absence of
registered objections by a donor. Arguments for this policy stress either the individual’s obligation to donate to
help others or society’s ownership of organs of deceased individuals. Some communitarians argue for this policy
on grounds that members of a society should be willing to provide others with objects of lifesaving value when
they can do so at no cost to themselves. Other even more robust accounts recommend policies of routine
removal that assume communal, rather than individual or familial, ownership of body parts of deceased
persons.16
An emphasis on the community and the common good also appears in recommended policies for the allocation
of health care. According to Daniel Callahan’s avowedly communitarian account, we should enact public policy
from a shared consensus about the good of society rather than on the basis of individual rights. Liberal
assumptions about government neutrality should be reduced, and society should be free to implement a
substantive concept of the good. For Callahan, the basic question is “What is most conducive to a good society?”
The basic question is not, as he thinks many in bioethics assume, “Is it harmful, or does it violate autonomy?”17
TWO THEORIES CLOSELY CONNECTED TO THE VALUE OF HEALTH
Since roughly the end of the twentieth century, two innovative theories have reoriented discussions about justice
in health policy and biomedical ethics. Both theories are inspired by Rawls and can be described as egalitarian,
but they cannot be accurately described as fundamentally Rawlsian. They have also been deeply influenced by
Aristotle’s moral theory, especially his views about the role and importance of states of human flourishing.18
This section examines these two theories.
Capability Theories
An approach known as capability theory presents an account of justice that starts from the premise that the
opportunity for individuals to reach states of proper functioning and well-being is of basic moral significance
and that the freedom to achieve these states should be analyzed in terms of the capabilities of individuals—that
is, persons’ powers or abilities to act and become what they value. In this theory, the quality of their lives is
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contingent on what they are able to achieve, and lives well lived are those in which individuals sustain and
exercise a group of identifiable core capabilities.19
This theory was pioneered by Amartya Sen as a way to address problems of welfare, justice, and human rights.
For him, an individual’s welfare is not determined by traditions that look to intrinsic goods or primary goods—
as in utilitarian theory and in Rawls’s theory of social primary goods, which holds that these goods are the ones
that any rational person would want irrespective of anything else they might want.20 Rather, Sen looks to actual
opportunities for living well so that individuals can carry out or be what they value. “In contrast with the utility-
based or resource-based lines of thinking,” Sen writes, “individual advantage is judged in the capability
approach by a person’s capability to do things he or she has reason to value.” In this account, the major way we
assess the aggregate moral progress of human societies is by the expansion of human capabilities and the
reduction of inequalities through the development of capabilities in those societies.21
This capability approach has been developed with an Aristotelian touch—and often with direct relevance to
biomedical ethics—by Martha Nussbaum.22 She uses the theory to address “social justice” and the “frontiers of
justice”—the latter including justice for the disabled, the global poor, and nonhuman animals. Nussbaum’s
theory holds that a minimal level of social justice requires making available “to all citizens … the following ten
core ‘capabilities,’” which she calls “the central human capabilities”:23
1. 1. Life. Being able to live a normal life without dying prematurely or existing in a reduced state making
life not worth living
2. 2. Bodily health. Being able to have good health, nutrition, and shelter
3. 3. Bodily integrity. Being able to move freely, to be secure against violence, and to have opportunities for
sexual satisfaction and reproductive choice
4. 4. Senses, imagination, and thought. Being able to use these capacities in an informed and human way
aided by an adequate and diverse education and in a context of freedom of expression
5. 5. Emotions. Being able to have emotional attachments to persons and things so that one can love, grieve,
and feel gratitude without having one’s emotional development blunted by fear, anxiety, and the like
6. 6. Practical reason. Being able to form a conception of the good and to critically reflect in planning one’s
life
7. 7. Affiliation. Being able to live meaningfully in the company of others, with self-respect and without
undue humiliation
8. 8. Other species. Being able to live with concern for animals, plants, and nature generally
9. 9. Play. Being able to play and enjoy recreational activities
10. 10. Control over one’s environment. Being able to participate as an active citizen in political choices
pertaining to one’s life and property
Each capability is essential for a human life not to be impoverished below the level of the dignity of a person,
and each capability forms the basis of a human right or entitlement. Our natural basic capabilities should be
developed, in this theory, in a manner that generates trained capabilities. For example, we innately have
capacities for speech, learning, and free action, which can then be developed into more advanced capabilities
such as literacy, job skills, and knowledge about how to avoid poverty and disease.
In Nussbaum’s account, these capabilities are essential to flourishing and must, as a matter of justice, be socially
sustained and protected. She claims that “all ten of these plural and diverse ends are minimum requirements of
justice, at least up to [a] threshold level.”24 Justice requires that we, as a society, see to it that all ten capabilities
are secured for all citizens to the designated threshold level; and we must ensure that actors and conditions in the
world do not interfere with individuals’ development of their core capabilities or block political participation in
a way that stunts or harms them.
Society also sometimes must equip persons with capabilities that include provision of the resources necessary
for living appropriately, such as food, education, nondiscriminatory institutions, and health care. This approach
focuses on putting persons in circumstances in which they are enabled to set their own goals and live as they
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choose, thereby bringing the theory close to theories of individual, social, and political freedom. Nussbaum also
brings an egalitarian dimension to her theory by insisting that “the political entitlements of all citizens are equal
and the same.”25
In addressing what Nussbaum calls the “frontiers of justice,” her theory is remarkably broad, covering not only
human capabilities and functioning for disabled and socially oppressed persons but also for nonhuman animals.
Treating an individual—human or nonhuman—justly requires, negatively, not obstructing the individual’s
attempts at flourishing through acts of coercion, violence, or cruelty and also requires, positively, support of
efforts to flourish.26 The inclusion of nonhumans renders this theory of justice extremely demanding, perhaps as
bold and ambitious as any theory of justice ever devised. It is also what we will later discuss as a global theory
that extends “justice to all world citizens, showing theoretically how we might realize a world that is just as a
whole” by providing the “necessary conditions for a decently just society.”27
Well-Being Theories
Capability theories are centered on the abilities, opportunities, and forms of freedom requisite for well-being, but
a recent general theory that is closely aligned with biomedical ethics focuses on well-being itself, rather than on
capabilities for well-being. In this account the focus is not on individuals being able to pursue states of affairs if
they so choose. The focus is on ensuring that everyone experiences well-being in ways commensurate with a
decent life. Utilitarianism could be read as this type of well-being or welfare theory, but in this subsection we
concentrate on the rare case of a theory—a theory originally devised by Madison Powers and Ruth Faden—that
is explicitly directed at public health and health policy.
They start with a basic premise: “Social justice is concerned with human well-being.” It is concerned not merely
with capabilities for well-being or with a single form of well-being such as health. They argue that a theory of
social justice should be concerned centrally with six core elements of well-being:28
1. 1. Health
2. 2. Personal Security
3. 3. Knowledge and Understanding
4. 4. Equal Respect
5. 5. Personal Attachments
6. 6. Self-determination
This list of core elements, or dimensions, of well-being may seem similar to Nussbaum’s list of capabilities—for
example, “personal attachment” resembles Nussbaum’s “affiliation”—but Powers and Faden emphatically reject
the language of capabilities as the best way to express the basic notions in a theory of justice.29 They regard
being healthy, being secure, and being respected as desirable states of being. We want not merely the capability
to be secure and healthy, but to be secure and healthy. Justice in this theory is concerned with society’s
achievement of well-being for its members, not solely with securing basic capabilities that enable us to pursue
states of well-being. In the case of the core element of health, the major goal is instantiation of both the right to
health and the right to health care.
The “job of justice”30 is to secure the core elements of well-being in all of the six dimensions for each person in
every society, including the global society. Each of the six dimensions is an independent concern of justice, but
they also interact with each other. The justice of health policies in both particular societies and the global order
can be judged not only by how well they serve to secure health, but also by their effects on the other core
elements of well-being.
Powers and Faden regard the goal of justice as that of securing well-being and human rights and also ensuring
against unfair relations of power and advantage. Theirs is a structural theory of justice—a notion they elaborate
in detail in their second book, Structural Injustice: Power, Advantage and Human Rights. Their focus on the
relationship between well-being and human-rights norms and fairness norms highlights the role that poverty and
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unfair disparities in power and advantage play in causing and perpetuating poor health and injustice in countries
around the globe.
Powers and Faden see the goal of egalitarian justice as the reduction of inequality in the world as we encounter it
—a world characterized by profound inequalities in well-being, resources, power, and advantage. Although
health is only the first of the six core elements of well-being, Powers and Faden argue that the moral justification
for health policies depends as much on the other five dimensions of well-being as it does on health—a critical
feature of their theory. They argue that the absence of any of the other five core elements can be destructive to
health. A constellation of inequalities can systemically magnify and reinforce initial conditions of ill health,
creating ripple effects that impact other dimensions of well-being. The interactive effects include poor education
and lack of respect, which can affect core forms of reasoning and health status. Social structures can compound
these adverse effects. The result is a mixture of interactive and cascading effects that requires urgent attention
from the point of view of justice.31 The job of justice is to correct these defects by making the six core elements
of well-being embedded values in social policy.
Conclusion
The six theories of justice we have considered can be expected to succeed only partially in bringing coherence
and comprehensiveness to our multilayered and sometimes fragmented conceptions of social justice. Policies
governing health care access and distribution in many nations provide excellent cases of the problems that
confront these theories. Many countries seek to make available high-quality health care for all citizens while
protecting public resources through cost-containment programs and respecting the choices of patients and
clinicians. Their policies promote the ideal of equal access to health care and good health for everyone,
including the indigent, while maintaining aspects of a competitive, free-market environment. These goals of
quality health care, equal access, free choice, social efficiency, and good health are all laudable (we here
presume without argument), but they are also difficult to render coherent in a social system and in a theory of
justice. Pursuing one goal may function to undercut another.
It is likely that there has never been a political state or a world order fashioned entirely on one and only one of
the six theories of justice that we have now discussed. Some commentators see these theories as having the
weakness of Plato’s ideal state in the Republic: They provide models but not truly practical instruments. This
skeptical caution is prudent, but it can lead to an underevaluation of the moral implications and force of the six
theories of justice we have considered. Intelligent use of the principles of justice in these theories has practical
significance for biomedical ethics as well as for health and health care in political states and the global
community, as we show in the remainder of this chapter. We will not attempt to assess the relative merits of
these theories. Rather, we use them as resources, with special attention to recent egalitarian thinking and
proposals about the distribution of health care and public health resources.
FAIR OPPORTUNITY AND UNFAIR DISCRIMINATION
The rule of fair opportunity is among the most influential features of egalitarian thinking in bioethics. We begin
this section with the question, “What kind of fair opportunity does justice require?” We consider first the
properties that have often served, unjustly, as bases of social distribution. These properties include gender, race,
IQ, linguistic accent, ethnicity, national origin, and social status. In anomalous contexts, such as casting for film
or theater, these typically irrelevant properties may become relevant and acceptable, though still challengeable
even in these domains. However, general rules such as “To each according to gender” and “To each according to
IQ” are unacceptable as prima facie material principles of justice. These properties are irrelevant and based on
differences for which the affected individual is not responsible. Basing actions or policies on them is
emphatically discriminatory.
The Fair-Opportunity Rule
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The fair-opportunity rule descends from Rawls’s conditions of fair equality of opportunity. The rule asserts that
individuals should not receive social benefits on the basis of undeserved advantageous properties and should not
be denied social benefits on the basis of undeserved disadvantageous properties, because these individuals are
not responsible for these properties. Properties distributed by the lotteries of social, psychological, and biological
life do not provide grounds for morally acceptable discrimination between persons in social allocations if people
do not have a fair chance to acquire advantaging properties or overcome disadvantaging properties.
The goal of supplying all citizens with a basic education raises moral problems analogous to these problems of
justice in health care. Imagine a community that offers a high-quality education to all students with basic
abilities, regardless of gender or race, but does not offer a comparable educational opportunity to students with
reading difficulties or mental deficiencies. This system is unjust. The students with disabilities lack basic skills
and require special training to overcome their problems to the extent they can. They should receive an education
suitable to their needs and opportunities, even if it costs more. The fair-opportunity rule requires that they
receive benefits that will ameliorate the unfortunate effects of life’s lottery. By analogy, persons with functional
disabilities lack critical capacities and need health care to reach a suitable level of function and have a fair
opportunity in life. When persons are not responsible for their disabilities, the fair-opportunity rule demands that
they receive help to reduce or overcome the unfortunate effects of life’s lottery of health.
Fair Opportunity as a Rule of Redress: Mitigating the Negative Effects of Life’s Lotteries
Numerous properties might be disadvantageous and undeserved—for example, a squeaky voice, an ugly face,
inarticulate or halting speech, an inadequate early education, malnutrition, and disease. But which undeserved
properties create a right in justice to some form of assistance in ameliorating their disadvantaging conditions?
A strong claim is that virtually all abilities and disabilities are functions of what Rawls calls the natural lottery
and the social lottery. “Natural lottery” refers to the distribution of advantageous and disadvantageous genetic
properties, and “social lottery” refers to the distribution of assets or deficits through family property, school
systems, tribal affiliation, government agencies, and the like. It is conceivable that all talents, disabilities, and
disadvantaging properties result from sources such as heredity, natural environment, family upbringing,
education, and inheritance. Even the ability to work long hours, the ability to compete, and a warm smile may be
biologically, environmentally, and socially engendered. If so, talents, abilities, and successes are not to our
credit, just as genetic disease is acquired through no fault of the afflicted person.
Rawls uses fair opportunity as a rule of redress, as do we. To overcome undeserved disadvantaging conditions,
whether they derive from the natural lottery or the social lottery, the rule of fair opportunity demands
compensation for disadvantages. The full set of implications of this theory have never been made entirely clear,
but Rawls’s conclusions are demanding:
[A free-market arrangement] permits the distribution of wealth and income to be determined by the
natural distribution of abilities and talents. Within the limits allowed by the background
arrangements, distributive shares are decided by the outcome of the natural lottery; and this outcome
is arbitrary from a moral perspective. There is no more reason to permit the distribution of income
and wealth to be settled by the distribution of natural assets than by historical and social fortune.
Furthermore, the principle of fair opportunity can be only imperfectly carried out, at least as long as
the institution of the family exists. The extent to which natural capacities develop and reach fruition
is affected by all kinds of social conditions and class attitudes. Even the willingness to make an
effort, to try, and so to be deserving in the ordinary sense is itself dependent upon happy family and
social circumstances.32
Current social systems of distributing benefits and burdens would undergo massive revision if this approach
were accepted and applied in social policy. Instead of permitting broad inequalities in access to health care and
quality of care—based on employer contributions, wealth, celebrity status, and the like—justice would be
achieved only if opportunity-reducing inequalities are first addressed. At some point processes of reducing the
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inequalities created by life’s lotteries must end because of social limits of resources.33 From this perspective, a
strict fair-opportunity rule will be overly demanding unless it is carefully qualified.
Redressing Racial, Ethnic, Gender, and Social Status Disparities in Health Care
Many disparities in health care and research are based on race, ethnicity, gender, and social status and thus
undermine fair opportunity. Health care goods and research risks have often been covertly distributed on the
basis of these properties, resulting in a differential impact in many countries on the health of racial and ethnic
minorities, women, and the poor.34 Various studies in the United States indicate that African Americans, other
minorities, women, and the economically disadvantaged have poorer access to various forms of health care and
to valued research in comparison to white males. For example, gender and racial inequities in employment
situations have an impact on job-based health insurance, and serving as research subjects often falls
disproportionately on socially and economically disadvantaged individuals, who have low incomes or are
homeless. Similarly, some forms of health care and research disproportionately benefit patients who are already
socially and economically advantaged.
Numerous efforts have emerged to identify and address racial, ethnic, gender, and social-status disparities.35 One
controversy centers on disparities in rates of coronary artery bypass grafting (CABG) between white and black
Medicare patients, as well as between male and female Medicare patients. Differences in use, which have been
evident since the 1980s, cannot be entirely accounted for by differential need, and it remains unclear to what
extent the rates can be explained by conditions such as physician supply, poverty, awareness of health care
opportunities, reluctance among blacks and women to undergo surgery, and racial prejudice. One study found
that, after controlling for age, payer, and appropriateness and necessity for CABG, African American patients in
New York State still had significant access problems unrelated to patient refusals.36 Moreover, racial disparities
persist in outcomes of CABG, probably reflecting complex factors that may be difficult to identify and correct.37
Disparities have persisted in other areas as well, including the management of acute myocardial infarction and
acute coronary syndromes,38 in cholesterol control among patients with cardiovascular diseases, in cancer
screening,39 in the diagnosis and treatment of conditions such as colorectal cancer and glucose control for
patients with diabetes,40 and in pain care.41 These disparities are among the unacceptable racial and ethnic
differences across a range of medical conditions and health care services that lead to worse health outcomes and
that were identified in the Institute of Medicine (now National Academy of Medicine) report on unequal access
Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.42 Disparities in use do not
always amount to injustices, but they require close scrutiny to determine their causes and to guard against
injustice.43
Several complex factors are associated with disparities in health care, not to mention disparities in health, which
raise even more challenging questions about causes and corrective measures. Some disparities in health care
may result from implicit biases, even though the causal links may not be as direct as sometimes supposed.
Consider disparities in pain care, for example. The history of the differential treatment of pain in the United
States displays a variety of social and cultural beliefs and values, including some that lead to systematic
undertreatment of African Americans for pain.44 One study found that false beliefs about biological differences
between whites and blacks (e.g., regarding the thickness of blacks’ skin) correlated with assessments of the level
of pain experienced by whites and blacks. These beliefs were not held only by laypeople but also by half of a
sample of medical students and residents at a major medical center. Medical participants with these beliefs rated
black patients’ pain lower than white patients’ pain and proposed less correct or less appropriate treatments.45
This study and others indicate the importance of attention to both explicit and implicit bias as possible causal
factors in disparities in health care that must be addressed along with culture, social structures, and policies. For
instance, one vignette study found that implicit racial bias (as measured by Implicit Association Tests) predicted
physicians’ differential assessments and recommendations of white and black patients for thrombolysis to treat
myocardial infarction.46
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Renal transplantation provides an illuminating example of racial disparities and vigorous—and somewhat
successful—efforts to achieve fairer policies and practices. In United States policy financial barriers play a less
significant role in kidney transplantation than in most areas of health care. The reason is that the federal End-
Stage Renal Disease (ESRD) Program ensures coverage for kidney dialysis and transplantation for virtually
every citizen who needs them if their private insurance does not provide the coverage. However, concerns about
costs are still a factor because immunosuppressant medications needed to maintain a transplanted kidney
throughout the recipient’s life are covered under the ESRD program for only three years. Evidence suggests that
discrimination against blacks, other minorities, women, and the poor occurs leading up to and including referral
to transplantation centers, where criteria for admission to waiting lists may vary considerably. For instance,
black Americans are much less likely than white Americans to be referred for evaluation at transplant centers
and to be placed on a waiting list or to receive a transplant.47 Factors include delayed or limited access to health
care, inadequate care and guidance through the system by health care professionals, and minorities’ distrust of
the system.
Once patients are admitted to the waiting list, the criteria for selecting recipients of deceased donor organs are
public and are represented through point systems. Disputes continue regarding how much weight to give to
different factors in the distribution of kidneys for transplantation, with particular attention to human lymphocyte
antigen (HLA) matching. The degree of HLA match between a donor and a recipient affects the long-term
survival of the transplanted kidney. However, assigning priority to tissue matching—and giving less weight to
time on the waiting list and other factors—has been shown to produce disparate effects for minorities. Most
organ donors are white; certain HLA phenotypes are different in white, black, and Hispanic populations; and the
identification of HLA phenotypes is less complete for blacks and Hispanics. Yet nonwhites have a higher rate of
end-stage renal disease and are also disproportionately represented on dialysis rolls. Blacks on the waiting list,
on average, wait longer than whites to receive a first kidney transplant, if they receive one at all.
After extensive discussion and deliberation, including professional and public input, the United Network for
Organ Sharing in 2003 changed its kidney allocation criteria to eliminate the priority given to HLA-B matching,
a subset of HLA phenotypes, with the goal of reducing the disparity in deceased donor kidney transplants
between African Americans and whites. The revised policy was defended on the grounds that it would resolve
“the tension inherent in the current allocation policy by improving equity without sacrificing utility.”48 It
succeeded in reducing the disparity: Before the policy change, African Americans had 37% lower rates of
deceased donor kidney transplants, but after the change they had 23% lower rates.49 Although the disparity was
significantly reduced, it was not fully eliminated, perhaps because of unaddressed or unknown factors.
Further studies of renal transplantation have found reduced racial disparity in the outcomes of kidney
transplantation in the United States, particularly in regard to three-year and five-year graft loss among African
Americans following a transplant.50 Others caution that racial disparities persist in kidney transplantation,
emphasizing that in addition to transplant outcomes—the focus of many studies—major disparities remain in
access to care, particularly as seen in delays in referral for transplant evaluation, in access to the national waiting
list, and in receiving a kidney transplant. Another recent policy initiative that may help is a rule that allows time
on the waitlist to begin when the patient’s kidney function declines to a certain level even before the patient has
started dialysis or been referred for a transplant.51
It is not clear whether, or to what extent, the policy change in HLA-B matching decreased the number of years
of transplant function. Normatively, however, the common tension between maximizing utility and providing
fair opportunity persists in this area as in many others. Critics have charged that organ allocation policies should
seek to maximize the number of quality-adjusted life-years per transplanted organ instead of using disparate
impact tests of policies to try to increase the access of racial or ethnic groups to transplantation.52
We conclude that developing an equitable policy of organ distribution and allocation is challenging and requires
attending to and monitoring disparities, considering the disparate impact of different policies as well as their
overall medical utility (producing the most overall patient welfare), and finding the best available ways to
balance medical utility and fair opportunity.
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VULNERABILITY, EXPLOITATION, AND DISCRIMINATION IN
RESEARCH
We now turn to a different, yet related, set of moral and social problems about fair opportunity that derive from
the vulnerability of human research subjects at risk of exploitation. We concentrate on the recruitment and
enrollment in clinical research—primarily in pharmaceutical trials—of the economically disadvantaged.
By “economically disadvantaged,” we mean persons who are impoverished, may lack significant access to
health care, may be homeless, or may be malnourished, and yet possess the mental capacity to volunteer to
participate in, for example, safety and toxicity (phase 1) drug studies. We consider in this section only persons
who possess a basic competence to reason, deliberate, decide, and consent. Somewhere between 50% and 100%
of research subjects who are healthy volunteers self-report that financial need or financial reward is their
primary motive for volunteering.53 We know little about the full extent of their involvement in research, just as
we do not know the scope of the use of poor persons as research subjects.54
Vulnerability and Vulnerable Groups
The relevant literature has sometimes viewed the class of the economically disadvantaged and vulnerable as
narrow, at other times as broad. The persons so classified may or may not include individuals living on the
streets, low-income persons who are the sole financial support of a large family, persons desperately lacking
access to health care, persons whose income falls below a certain threshold level, and so forth.
The notion of a “vulnerable group” was a major category in bioethics and health policy between the 1970s and
the 1990s.55 In the years thereafter it suffered from overexpansion because so many groups were declared
vulnerable—from the infirm elderly, to the undereducated, to those with inadequate resources, to whole
countries whose members lack rights or are subject to exploitation.56 The language of “vulnerable groups”
suggests that all members of a vulnerable group—for example, all prisoners and all poor people—are by
category vulnerable, but for many groups a label covering all members of the group serves to overprotect,
stereotype, and even disqualify members capable of making their own decisions.57 “Vulnerable” is an
inappropriate label for any class of persons when some members of the class are not vulnerable in the relevant
respects. For example, pregnant women as a class are not vulnerable, although some pregnant women are.
Accordingly, we will not here speak of the economically disadvantaged as a vulnerable group. Instead, we will
concentrate on vulnerabilities.58
A tempting strategy to protect the interests of economically disadvantaged persons is to exclude them
categorically from participation in research even if they are not categorically vulnerable. This remedy would
eliminate the problem of unjust exploitation but also would deprive these individuals of the freedom to choose
and would often be harmful to their financial interests. Nothing about economically disadvantaged persons
justifies their exclusion, as a group, from participation in research, just as it does not follow from their status as
disadvantaged that they should be excluded from any legal activity they wish to pursue. Despite the increased
risks of exploitation experienced by the economically distressed, to exclude them categorically would be an
unjust and paternalistic form of discrimination that might serve to further marginalize, deprive, or stigmatize
them.
Undue Inducement, Undue Profit, and Exploitation
Other moral problems about enrolling the economically disadvantaged in research include undue inducement,
undue profit, and exploitation. Some persons report feeling heavily pressured to enroll in clinical trials, even
though their enrollment is classified as voluntary.59 These individuals may be in desperate need of money.
Attractive offers of money and other goods can leave a person with a sense of being constrained and having no
meaningful choice but to accept research participation.
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Constraining situations. These constraining situations are sometimes misleadingly termed coercive situations.60
Here a person feels controlled by the constraints of a situation, such as severe illness or lack of food or shelter,
rather than by the design or threat of another person. No coercion has occurred because no one has intentionally
issued a threat to gain compliance or forced a person to consent. Still, persons feel “threatened” by their
situations and sometimes feel compelled to prevent or ameliorate perceived harms of illness, powerlessness, or
lack of resources. The prospect of another night of homelessness on the streets or another day without food can
compel a person to accept an offer of research participation, just as such conditions can compel a person to
accept an unpleasant or risky job that the person would otherwise not accept.
Undue inducement. In constraining situations, monetary payments and related offers such as shelter or food
generate problems of justice commonly referred to as undue inducement, on the one hand, and undue profit, on
the other. The “Common Rule” in the United States requires investigators to “minimize the possibility of
coercion or undue influence,” but it does not define, analyze, or explain these notions.61 The bioethics and
public policy literatures also do not adequately handle the problems.
Monetary payments seem unproblematic if the payments are offers that persons find welcome and do not want to
refuse and the risks are at the level of everyday activities.62 But inducements become increasingly problematic
as (1) risks are increased, (2) highly attractive inducements are offered, and (3) the subjects’ economic
disadvantage is elevated. The problem of exploitation centers on whether solicited persons are situationally
disadvantaged and lack viable alternatives, feel forced or compelled to accept offers that they otherwise would
not accept, and assume increased risk in their lives. As these conditions are mitigated, problems of exploitation
diminish and may vanish altogether. As these conditions are increased, problems of exploitation loom larger.
The presence of an irresistibly attractive offer is a necessary condition of “undue inducement,” but this condition
is not by itself sufficient to make an inducement undue. A situation of undue inducement must also involve a
person’s assumption of a serious risk of harm that he or she would not ordinarily assume. Pinpointing a precise
threshold level of risk is difficult, but the level would have to be above the level of common job risks such as
those of unskilled construction work. Inducements are not undue unless they are both above the level of standard
risk (hence excessive in risk) and irresistibly attractive (hence excessive in payment) for persons in a
constraining situation.
Undue profit. Undue inducements should be distinguished from undue profits, which occur from a distributive
injustice of too small a payment to subjects by contrast to an irresistibly attractive, large payment. In the undue-
profit situation, the subjects in research receive an unfairly low payment, while the sponsor of research garners
more than is justified. Often, this state of affairs seems to be what critics of pharmaceutical research claim to be
the case: Researchers approach potential subjects who are in a weak to nonexistent bargaining situation,
constrained by their poverty, and offered an unjustly small amount of money and an unjustly low share of the
benefits, while companies reap unseemly profits. If this description captures the moral concern, the basic moral
problem is how to determine a nonexploitative, fair payment for service as a research subject, which might
include benefits of successful research such as free provision of an experimental drug after the end of a clinical
trial.
How should we handle these two moral problems of exploitation—undue inducement (unduly large and
irresistible payments) and undue profit (unduly small and unfair payments)? One approach is to prohibit research
that involves excessive risk, even if a good oversight system is in place. This answer is appealing, but we would
still need to determine in each case what constitutes excessive risk, irresistibly attractive payment, unjust
underpayment, and constraining situations—difficult and unresolved problems.
These problems resist a tidy solution. To avoid undue inducement, payment schedules must be kept reasonably
low, perhaps approximating an unskilled labor wage. Even at this low level, payment might still be sufficiently
large to constitute an undue inducement for some research subjects. As payments are lowered to avoid undue
inducement, research subjects in some circumstances will be recruited largely or entirely from the ranks of the
economically disadvantaged. Somewhere on this continuum the amount of money paid will be so little that it is
exploitative by virtue of undue profits yielded by taking advantage of a person’s misfortune. If payment scales
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were increased to avoid undue profit, they would at some point become high enough to attract persons from the
middle class. At or around this point, the offers would be excessively attractive, undue inducements for
impoverished persons interested in the payments.63 Addressing this dilemma generates deep social injustice if
the pool of research subjects is composed more or less exclusively of the economically disadvantaged.
Finally, an important reason for caution about prohibiting research or about encouraging pharmaceutical
companies to pull out of communities with a significant percentage of poor people is that payments for studies
may be a vital source of needed funds for the economically disadvantaged and a way to build an infrastructure
and create jobs in communities. Among the few readily available sources of money for some economically
distressed persons are jobs such as day labor that may expose them to more risk and produce less money than the
payments generated by participation in phase 1 clinical trials.64 To deny these persons the right to participate in
clinical research on grounds of potential exploitation can be paternalistic and demeaning, as well as
economically detrimental. In many circumstances such treatment would be unjust, but in other circumstances it
would not involve unjust practices.
NATIONAL HEALTH POLICY AND THE RIGHT TO HEALTH CARE
Problems of justice in access to health care differ substantially in many parts of the world, but questions about
who shall receive which share of a society’s resources are at the center of the discussion almost everywhere. In
this and later sections we examine controversies about appropriate national health policies, inequalities in
distributions of care, rationing of health-related goods and services, and problems of global justice.
The primary economic barrier to health care access in many countries is the lack of adequate insurance or
funding for care. In the United States in 2016, the percentage of people without health insurance coverage for the
entire calendar year was 8.8%, or 28.1 million; the percentage of people with some form of health insurance
coverage for all or part of 2016 was 91.2%.65 Inadequate insurance can profoundly affect persons who are
uninsured, uninsurable, underinsured, or only occasionally insured. Some problems of unfairness arise in the
United States because of the system’s reliance on employers for financing a huge portion of health insurance.
Persons employed by medium- to large-sized employers are generally covered better and may be subsidized by
tax breaks. When employed persons who are not covered become ill, taxpayers (and not free-riding employers)
may pick up the cost. The financing of health care is also regressive. Low-income families pay premiums
comparable to and often higher than the premiums paid by high-income families, and many individuals who do
not qualify for group coverage pay dramatically more for the same coverage than those who qualify in a group.
A dark cloud of injustice hangs over these circumstances.
A social consensus appears to exist in the United States that all citizens should be able to secure equitable access
to health care, including insurance coverage. However, this consensus is content-thin regarding the role of
government, methods of financing insurance and health care, how much insurance is sufficient, and the meaning
of “equitable access.” It remains unclear whether such a fragile consensus can generate a secondary consensus
about how to implement a system of equitable access. Similar issues appear in many nations.
Arguments Supporting Rights to Health Care
Whether there is a right to health care has long been debated in public discourse around the world. Some
countries maintain the more or less libertarian view that citizens have a right to purchase health insurance,
whereas no government obligation exists to supply health care. By contrast, some countries with roughly
utilitarian, egalitarian, or communitarian commitments hold that citizens have a right to health care that is
government-guaranteed. Many countries adopt elements of rights to health care based on pieces of these several
theories of justice. In this section, we explore which position is the most morally defensible.
Two influential arguments support a moral right to government-funded health care (but other good arguments
may also be available): (1) an argument from collective social protection and (2) an argument from fair
opportunity. Even if these are good arguments, as we think they are, how much in the way of health care and
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public health should be funded by the government? This question about sufficiency of government support may
be the most important practical question in all of biomedical ethics.
The first argument focuses on the similarities between individuals’ health needs and other needs that
governments have traditionally met. Threats to health are often relevantly similar to threats presented by crime,
fire, and pollution. Collective actions and resources have conventionally been used to resist such threats, and
many collective schemes to protect health exist in virtually all societies, including extensive programs of public
health and environmental protection. Consistency suggests that critical health care assistance in response to
threats to health should likewise be a collective responsibility. This argument by analogy appeals to coherence:
If the government has an obligation to provide one type of essential service, then it must have an obligation to
provide another relevantly similar essential service.
This argument has been criticized on grounds that government responsibilities are neither obligatory nor
essential. However, this perspective is favored by few beyond those committed to a strong libertarianism. On
each of the nonlibertarian theories of justice previously explicated, the argument from other comparable
government services generates a public obligation to provide some level of goods and services to protect health.
Nevertheless, relevant dissimilarities exist between the good of health care for individuals and programs that
protect the general public through social goods such as public health measures. The argument from collective
social protection therefore might seem to fail or at least to be incomplete.
However, additional premises supporting the right to health care are found in society’s right to expect a decent
return on the investment it has made in physicians’ education, funding for biomedical research, and funding for
various parts of the medical system that pertain to health care. This supplementary argument appeals to
reciprocity: Society should give a proportional return on benefits received from individuals, with all alike
sharing the burdens of taxation necessary to produce these benefits. A return to be expected on individuals’
investments in a well funded health system based on taxes is protection of their personal health. The scope of
protection extends beyond public health measures to access to physicians and the products of research.
This argument based on reciprocity has merit, but we cannot reasonably expect a direct individual return on all
of our collective investments in a health system. Some investments are only for the purpose of discovering
treatments, not for the provision or distribution of treatments once discovered. Even if a government funds drug
research and regulates the drug industry, these activities may not justify the expectation that the government will
subsidize or reimburse individuals’ drug purchases. Accordingly, this first argument in support of a moral right
to health care may secure only a right to a decent return to individuals on their contribution to society’s
investment, not a full return.
A second argument buttresses this first argument by appeal to the previously discussed fair-opportunity rule,
according to which the justice of social institutions should be assessed by their tendency to counteract lack of
opportunity caused by unpredictable misfortune over which the person has no meaningful control. The need for
health care is greater among the seriously diseased and injured, because the costs of health care for them can be
uncontrollable and overwhelming, increasingly so as their health status worsens. Insofar as injuries, diseases, or
disabilities create profound disadvantages and reduce agents’ capacity to function properly, justice as the
provision of a fair opportunity requires that we use societal health care resources to counter these effects and
give persons a fair chance to develop, maintain, restore, and use their capacities.66
The Right to a Decent Minimum of Health Care
One problem about the right to health-related goods and services is how to specify the entitlements the right
requires us to recognize. One egalitarian approach proposes a right of equal access to health resources. At a
minimum, this goal entails that all persons have a right not to be prevented from obtaining health care, but this
thin right of access does not entail that others must provide anything in the way of goods, services, or resources.
Some libertarians favor not providing anything from public funds, but their proposal is not supported by the
other general theories of justice we have examined. A meaningful right of access to health care includes the right
to obtain goods and services to which every entitled person has an equal claim. A demanding interpretation of
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this right appears in the global-justice claim that everyone everywhere should have equal access to all goods and
services available to anyone. Unless the world’s economic systems are radically revised and economic resources
are abundantly available, this conception of a human right that applies globally will remain a utopian ideal that is
unlikely to be fully realized. Rights to health-related resources will likely always have severe limits (see our
discussions below of “Setting Priorities” and “Rationing,” pp. 300–13). But this conclusion does not diminish
the importance of practical pursuits of a human right in various areas of public health and health care.
The right to a decent minimum of health care presents a more attractive goal—and, realistically, probably the
only goal that can be achieved in most societies seeking to implement a right to health care.67 This egalitarian
goal is one of universal accessibility in a political community to fundamental health care and basic health-related
resources. The standard conception is a two-tiered system of health care: enforced social coverage for basic and
catastrophic health needs (tier 1), together with voluntary private coverage for other health needs and desires
(tier 2). At the second tier, better services, such as luxury hospital rooms and optional, cosmetic dental work, are
available for purchase at personal expense through private health insurance or direct payment. The first tier
meets needs by universal access to basic services. This tier presumably covers at least public health protections
and preventive care, primary care, acute care, and special social services for those with disabilities. This model
of a safety net that protects everyone acknowledges that society’s obligations are demanding, but not limitless.
The decent minimum offers a possible compromise among the theories of justice discussed previously, because
it incorporates some moral premises that most theories stress or at least find acceptable. It guarantees basic
health care for all on a premise of equal access while allowing unequal additional purchases by individual
initiative, thereby mixing private and public forms of distribution. An egalitarian should see an opportunity to
use an equal access principle and to embed fair opportunity in the distributional system. Utilitarians should find
the decent-minimum proposal attractive because it serves to minimize public dissatisfaction, to promote social
utility, and to permit allocation decisions based on cost-effectiveness analysis. Similarly, supporters of a
capability theory or a well-being theory can appreciate the likelihood of increases in the capability of many to
afford better quality care and achieve higher levels of health. The libertarian may dislike these outcome-oriented
approaches but still should see a substantial opportunity for free-market production and distribution since the
second tier is left entirely up to free choice and private insurance.
A health care system that finds pockets of support from each of these accounts could also turn out to be the
fairest approach to democratic reform of a system of health-care distribution.68 We do not now have—and are
not likely ever to have—a single viable theory of justice, and therefore compromises of this sort should be
attractive as an approach to public policy.
The decent-minimum proposal is attractive theoretically, but it will be difficult to specify in social policy and to
implement politically. The plan raises questions about whether society can fairly, consistently, and
unambiguously devise a public policy that recognizes a right to health care for primary needs without creating a
right to expansive and expensive forms of treatment such as liver transplantation that reduce the resources that
could be put to broader use elsewhere. Nonetheless, in light of the current flux in national health systems,
constructing viable systems is the major task confronting the ethics of health policy in many, and perhaps all,
countries. We include in this domain the problem of setting priorities in the distribution and use of health
resources, a problem handled in a later section of this chapter.
Fair public participation is indispensable in a process of setting the threshold of a decent minimum and in fixing
the precise content of the package of goods and services to be offered (and those to be withheld). Issues of
allocating, rationing, and setting priorities, as discussed later in this chapter, must be confronted in the process of
public participation. When substantive standards are contested regarding a decent or sufficient level of health
care, fair procedures for reaching agreement and implementing a social policy may be our only recourse.
Ronald Dworkin has proposed a hypothetical test of what “ideal prudent insurers” would choose.69 He criticizes
an undue use of the “rescue principle,” which asserts that it is intolerable for a society to allow people to die who
could have been saved by spending more money on health care. He argues that the “rescue principle” grows out
of an “insulation model” that treats health care as different from and superior to all other goods. In its place,
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Dworkin envisions a “prudent insurance” ideal involving “a free and unsubsidized market.” This ideal market
presupposes a fair distribution of wealth and income; full information about the benefits, costs, and risks of
various medical procedures; and ignorance about the likelihood that any particular person will experience
morbidity, either life-threatening or non-life-threatening, from diseases and accidents. Under these
circumstances, whatever aggregate amount a well-informed community decides to spend on health care is just,
as is the distribution pattern it chooses.
Dworkin’s strategy will be difficult to implement, but it provides a good model for testing hypotheses about how
much justice requires in the way of a decent minimum.
Forfeiting the Right to Health Care
If we assume that all citizens enjoy a right to a decent minimum of health care, can particular individuals forfeit
the right even though they wish to retain it? The question is whether a person forfeits the right to certain forms
of socially supported health care through avoidable and voluntary risky actions that result in personal ill health
and that generate health care needs. Examples include patients who acquire AIDS as a result of unsafe sexual
activities or intravenous drug use, smokers who develop lung cancer, workers who fail to use protective
equipment in the workplace, motorcycle riders who refuse to wear helmets, and people who develop liver
disease after years of excessive consumption of alcohol. Some regard it as unfair to ask all individuals who
participate in insurance programs to pay higher premiums or higher taxes to support those individuals in the
program who voluntarily engage in risky actions.70 This conclusion does not conflict with the rule of fair
opportunity, they argue, because risk-takers’ voluntary actions reduce their opportunity.
However, can society fairly exclude risk-takers from coverage in even paradigmatic cases such as smoking? In
answering this question, a society would first have to identify and differentiate the various causal factors in
morbidity, such as natural causes, the social environment, and personal actions. Once these factors have been
identified, solid evidence must establish that a particular disease or illness resulted from voluntary activities
rather than from some other causal condition. Second, the personal actions in question must have been
autonomous. If the risks are unknown at the time of action, or the action is not voluntary, individuals cannot be
justly held responsible for their choices.
A fundamental problem is that it is virtually impossible to isolate causal factors in many cases of ill health
because of complex causal links and limited knowledge. Medical needs often result from the conjunction of
genetic predispositions, voluntary actions, effects of prior disease, and environmental and social conditions. The
respective roles of these different factors are often not established, as in attempts to determine whether a
particular individual’s lung cancer resulted from personal cigarette smoking, passive smoking, environmental
pollution, occupational conditions, or heredity (or some combination of these causal conditions).
Despite these problems, it would be fair in some circumstances to require individuals to pay higher premiums or
taxes if they accept well-documented risks that may result in costly medical attention. Risk-takers could be
required to contribute more to particular pools, such as insurance plans, or to pay a tax on their risky conduct,
such as an increased tax on cigarettes.71
A more difficult question is whether it is justifiable to deny individual risk-takers equal access to scarce health
care treatments that they need in part as a result of their own actions. One widely debated issue concerns patients
with alcohol-related end-stage liver failure (ESLF) who need liver transplants. Donated livers are scarce, and
many patients suffering from ESLF die before they can obtain transplants. In the United States in 2016,
approximately 14,000 patients were awaiting a liver transplant at any one time, but only 7,841 patients received
a liver transplant that year.72 A major cause of ESLF is excessive alcohol intake that produces cirrhosis and
other liver diseases. Hence, the question arises whether patients who have alcohol-related ESLF should be
excluded from waiting lists for liver transplants or, if admitted to waiting lists, should be given lower priority
scores. Arguments for their total exclusion or lower priority generally appeal to the risk that they will resume a
pattern of alcohol abuse and again experience ESLF, thereby wasting the transplanted liver. However, studies
indicate that patients with alcohol-related ESLF who receive a liver transplant and abstain from alcohol do as
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well as patients whose ESLF resulted from other causes (although conditions such as a long smoking history
complicate this generalization).73 Accordingly, a good case can be made, on grounds of medical utility and
fairness, for not excluding alcohol-related ESLF patients altogether and instead for requiring demonstrated and
extended abstention from alcohol prior to admission to the wait list or to receiving a liver transplant.74
It is appropriate to exclude any patient who is consuming alcohol while seeking a liver transplant. Although it is
not a national policy, most transplant centers in the United States require a six-month period of alcohol
abstinence and counseling before a patient with alcohol-related ESLF can be admitted to the liver transplant
waiting list. This judgment about admission to the waiting list generally requires an assessment by a
multidisciplinary team that considers medical, psychological, and social factors, including those that would
affect compliance, abstinence, and post-transplant success. Once on the waiting list, all patients are treated
equally with other candidates for transplantation, according to scores on the Model for End-stage Liver Disease
(MELD), which indicate the probability that the patient will die within three months without a transplant.
However, poignant stories depict the difficulties patients with alcohol-related liver disease face when seeking to
be admitted to the wait list in the first place.75 For patients with one specific alcohol-related cause of ESLF—
acute alcohol-related hepatitis—survival for a six-month period of abstinence and counseling is often
impossible, and transplant centers are now successfully transplanting them early—that is, sooner than six
months.76
In a controversial proposal, Alvin Moss and Mark Siegler argue that patients with alcohol-related ESLF should
automatically receive a lower priority ranking in the allocation of donated livers than patients who develop
ESLF through no fault of their own.77 Moss and Siegler appeal to fairness, fair opportunity, and utility in
support of their proposal. Stressing that it is fair to hold people responsible for their decisions, they argue that it
is “fairer to give a child dying of biliary atresia an opportunity for a first normal liver than it is to give a patient
with [alcohol-related ESLF] who was born with a normal liver a second one.”78
Even if it were established that alcoholism is a chronic disease for which individuals are not responsible, Moss
and Siegler contend that individuals who have this disease have the responsibility to seek and use available and
effective treatments to control their alcoholism and prevent late-stage complications, including liver failure. In
this account it is fair—that is, just—to hold them responsible for their failure to do so by assigning them a lower
priority for a liver transplant.
In our assessment, by contrast to the Moss-Siegler conclusion, all patients should be evaluated on a case-by-case
basis, considering their medical need and probability of successful transplantation, rather than being excluded
altogether or automatically assigned a lower priority. An individual can then receive a lower priority rating, as
warranted.79 There are clear examples of conditions under which personal responsibility should affect priorities.
For instance, a transplant recipient who, through personal negligence, rather than inability to pay, does not take
regular and sufficient immunosuppressant medication, causing the transplant to fail, should not be accepted for a
second transplant or should receive lower priority for it.80 By wasting the donated organ he or she received, the
patient forfeits the opportunity for yet another chance at a normal organ.
Moss and Siegler also have a utilitarian concern about providing liver transplants to patients with alcohol-related
liver diseases: They believe that the public will be less willing to donate livers if many go to patients with
alcohol-related ESLF. This concern is not trivial, in light of the persistent shortage of donated livers and
evidence that some people believe that these patients are less deserving of transplants because of their
responsibility for their liver disease.81 However, this concern about consequences should not replace or
outweigh a fair allocation procedure. This problem underlines the need to educate the public about fair organ
allocation, which includes rigorous assessment of the patient’s likelihood of resuming harmful drinking and
wasting a transplanted liver.
GLOBAL HEALTH POLICY AND THE RIGHT TO HEALTH
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Some of the theories of justice examined early in this chapter could be presented either as global theories
(principles of justice operate globally, not merely locally) or as statist theories (principles operate locally, not
globally). A statist theory holds that normative requirements of justice apply only within the political state,
whereas a global theory sees moral norms as applicable irrespective of political boundaries.82 The capability
theory and the well-being theory examined earlier are explicitly global theories of justice. Communitarianism
and libertarianism are primarily statist theories in their typical forms. Utilitarian and many egalitarian theories
could be fashioned as either global or statist.
The issues here concern (1) whether the territory in which theories, principles, and rules of justice operate should
be restricted to independent political units such as nation-states or should be understood as applying globally and
(2) whether traditional theories of justice have failed to provide the central concepts and principles that could be
used to develop global theories of justice and global institutions. Reaction to Rawls’s egalitarianism (and some
say to statism) has guided much of this literature, but global theories are not primarily erected on Rawls’s model.
Statist Theories and Global Theories
Rawls’s theory and, until recently, many other approaches to justice in health care and health policy have been
conceived in terms of the rules and policies of nation-states, where governments have historically formulated
and implemented laws and policies that affect the distribution of opportunities and use of economic resources.
Taxation and the use of money garnered from taxation are largely local matters of distributive justice, but some
policies of states, including the expenditure of funds, are global. For example, a policy of expending state funds
to help eliminate malaria from the world is a global policy.
In an eighteenth-century theory of justice that deeply affected Rawls’s ideas about the circumstances of
justice,83 David Hume argued that rules of justice are inherently local, but that the reasons why rules of justice
are needed (in effect required) in all nation-states apply globally. He also suggested that rules of impartiality in
the formulation and application of rules of justice apply universally.84 Rawls argued that there are universal
principles of justice, even though many specific rules of justice such as those found in national health policies
are not universal. The dominant conception in both Hume and Rawls is statist, yet both see the need across all
nation-states for a set of impartially formulated norms of justice suitable for those states.
The idea of a right to goods and services such as a decent minimum of health (by contrast to a decent minimum
of health care) through public health measures, sanitation, supply of clean drinking water, and the like can and,
many argue, should be modeled on the global order that reaches beyond national health systems. A globalized
world has brought a realization that projects of protecting health and maintaining healthy conditions are often
international in nature and require a justice-based restructuring of the global order to be effective. One model of
global justice is found in a statement of the United Nations:
The right of everyone to the enjoyment of the highest attainable standard of physical and mental
health is a human right. … [F]or millions of people throughout the world, the full realization of
th[is] right … still remains a distant goal and … especially for those living in poverty, this goal is
becoming increasingly remote. … [P]hysical and mental health is a most important worldwide
social goal, the realization of which requires action by many other social and economic sectors in
addition to the health sector.85
Ethical and political theories that explicitly address questions of global justice are sometimes referred to as
“cosmopolitan theories,” although “global theories” now seems the preferred term. In bioethics, this approach,
which has deeply influenced the authors of this volume, takes as its starting point large and often catastrophic
social conditions—in particular, the devastating health consequences of famine, poverty, and epidemic disease.
The theory then attempts to delineate which obligations extend across national borders to address these
problems. The obligations advanced are similar to those traditionally found in moral and political theory, but
now globalized in scope and application.
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An early influence on global theories came from Peter Singer’s utilitarian theory, as discussed in Chapter 6 (pp.
220–21, and see also the discussion of utilitarian theory in Chapter 9, pp. 388–94). One reason for Singer’s
influence in turning philosophers’ attention in a global direction was his trenchant way of pointing to the gap
between the demands of fundamental principles of morality, such as those we treat in this book, and the practice
of those principles at the international level. Singer succeeded in convincing many philosophers and health
professionals that despite the highly demanding nature of his moral conclusions, morality requires more of us
than many had thought, especially in addressing global poverty and consequent ill health.86
Singer’s theory, which is grounded in utilitarian beneficence, is oriented toward the obligations of agents such as
individuals and government officials. By contrast, the perspective of egalitarian social justice proposes that we
orient theory around the moral evaluation of social institutions and their responsibilities, legitimacy, and
weaknesses. The focus is not on the morality of individual choices but on the morality of the basic structure of
society within which moral choices are made. The most influential global theories attempt to use a theory of
justice as a model for global institutional reform—for example, reform in the structure and commitments of the
World Health Organization, the World Trade Organization, and pharmaceutical pricing and marketing.
Some defenders of a global theory, including Singer, argue that Rawls unduly restricts the scope of the theory of
justice. In a consistent moral theory that embraces universal principles one would expect the theory to be applied
everywhere, not merely within the boundaries of particular nation-states. If the worst-off in society are a focal
point of concern, as they are in Rawls’s theory, the situation of the truly worst-off—the global poor—would
presumably have to be addressed. The basic structure of society lies in the scattered norms and institutions of
commerce, education, and public policy that affect almost everyone, and there is no clear way to, or good reason
to, separate citizens from foreigners. The criterion of national citizenship, from the point of view of global
theories of justice, is morally arbitrary much as race, class, and gender are. Applying rules of justice exclusively
within nation-states also will have the effect of increasing disparities in wealth and well-being rather than
alleviating the fundamental problems.87
Global theory in bioethics is motivated by problems of poor health and inequalities that are the result of many
interactive effects in society. It would be bizarre for a theory of justice to look only at the distribution of health
care, while ignoring the many causes of poor health and poor delivery of care, and what can and should be done
about these causes. Deprivations of education cause deprivations of health, just as ill health can make it difficult
to obtain a good education. A deficiency of well-being can affect the other dimensions of well-being, and all can
make for poor health. In many societies a constantly compounding body of deprivations exists.
Inequalities that result from this compounding are among the most urgent for a theory of justice to address,
regardless of the nation in which they occur.88 Inequalities are not merely a matter of bad luck or personal
failings. They are often a consequence of unfair social institutions that can be restructured explicitly to reduce
the inequalities. If, for example, lower-quality public schools result in woeful educational inequalities, which in
turn contribute to poor diet and poor health, it is within our power to alter this situation. Rawls is right to point to
the pervasive effects of these institutions and their place in the theory of justice. In some theories previously
discussed, especially those of Powers and Faden, and Sen and Nussbaum, the authors sensibly argue that
inequalities in health and well-being brought about by severe poverty have a moral urgency at the global level.
Beyond radical inequalities in health care, somewhere around twenty million people in the developing world die
each year, including approximately eight million young children, from malnutrition and diseases that can be
inexpensively prevented or treated by cheap and available means. If the reach of social justice is global, such
inequalities from disadvantaging conditions would be at the top of the list of conditions to be remedied.89 The
best strategies for attacking these problems remain unclear, but we can again hold out the model of a decent
minimum as the goal. As noted earlier the goal in global justice is likely to be a decent minimum standard of
health, not merely health care. It would be a massive gain in global justice if all persons could have a fair
opportunity to achieve a reasonably good level of health and general welfare.
ALLOCATING, SETTING PRIORITIES, AND RATIONING
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Policies about rights to health and health care encounter countless theoretical and practical difficulties of
allocating, rationing, and setting priorities. We begin to work on these problems of justice in this section by
treating basic conceptual and structural matters, with primary attention to intrastate and institutional decisions,
with some attention later to issues of global justice.
Allocation
Decisions about allocation of particular goods and services can have far-reaching effects on other allocations.
For example, funds allocated for medical and biological research may affect the availability of training programs
for physicians. Allocation decisions commonly involve selection among desirable programs. Four distinct but
interrelated types of allocation can be identified. The third and fourth are of particular importance for the
discussion of health care rationing later in this chapter.
1. 1. Partitioning the comprehensive social budget. Every large government operates with a comprehensive
budget, which includes allocations for health and for other social goods, such as housing, education,
culture, defense, and recreation. Health is not our only value or goal, and expenditures for other goods
inevitably compete for limited resources with health-targeted expenditures. However, if a well-off society
fails to allocate sufficient funds to provide adequate public health measures and access to a decent
minimum of health care, its allocation system is likely to be unjust.
2. 2. Allocating within the health budget. Health allocation decisions must be made from within the budget
portion devoted to health-related budgets. We protect and promote health in many ways besides the
provision of medical care. Health policies and programs for public health, disaster relief, poverty aid,
occupational safety, environmental protection, injury prevention, consumer protection, and food and drug
control are all parts of society’s effort to protect and promote the health of its citizens and often citizens of
other nations as well.
3. 3. Allocating within targeted budgets. Once society has determined its budget for sectors such as public
health and health care, it still must allocate its resources within each sector by selecting projects and
procedures for funding. For example, determining which categories of injury, illness, or disease should
receive a priority ranking is a major part of allocating health care resources. Policymakers will examine
various diseases in terms of their communicability, frequency, cost, associated pain and suffering, and
impact on length of life and quality of life, among other factors. Under some circumstances, for example,
it might be justified, as a matter of priority ranking, to concentrate less on fatal diseases, such as some
forms of cancer, and more on widespread disabling diseases, such as arthritis.
4. 4. Allocating scarce treatments for patients. Because health needs and desires are virtually limitless, every
health care system faces some form of scarcity, and not everyone in need of a particular form of health
care can gain adequate access to it. At various times and in various places, medical resources and supplies
such as penicillin, insulin, kidney dialysis, cardiac transplantation, and space in intensive care units have
been allocated for specific patients or classes of patients. These decisions are more difficult when an
illness is life-threatening and the scarce resource potentially lifesaving. The question can become, “Who
shall live when not everyone can live?”90
Allocation decisions of type 3 and type 4 interact. Type 3 decisions partially determine the necessity and extent
of patient selection by determining the availability and supply of a particular resource. Distress in making
difficult choices through explicit decisions of type 4 sometimes leads a society to modify its allocation policies
at the level of type 3 to increase the supply of a particular resource. For example, in part because of
controversies about criteria of access to a limited supply of dialysis machines, the US Congress passed
legislation in 1972 that provides funds to ensure near-universal access to kidney dialysis and kidney
transplantation for its citizens without regard to their ability to pay.91
Setting Priorities
Setting priorities, both in health care and in public health, is an urgent topic about just health policy.92
Structuring clear priorities in type 3 allocation decisions has been difficult in many countries, and costs continue
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to rise dramatically as a result of several factors—in particular, insurance costs, new technologies, and longer
life expectancy. The difficulty in setting priorities comes in determining what ought to be done when resources
are inadequate to provide all of the health benefits that it is technically possible to provide. A classic example of
the problem in health policy comes from the state of Oregon.
Lessons from the Oregon plan. Legislators and citizens in Oregon engaged in a pioneering effort to set priorities
in allocating health care in order to extend health insurance coverage to uninsured state residents below the
poverty line. Oregon’s Basic Health Services Act became a focal point for debates about justice and setting
limits in health policy in the United States, including issues about access to care, cost-effectiveness, rationing,
and a decent minimum. This act attempted to put into practice in Oregon what has typically been discussed only
at the level of theory. Many believed that the Oregon plan would mark the beginning of a new era in coming to
grips with problems of rationing in the United States, but despite this ambitious plan’s important impact and
influence, many moral issues regarding rationing continue to be problems for health policy.93
The Oregon Health Services Commission (OHSC) was charged with producing a ranked priority list of services
that would define a decent minimum of coverage by Medicaid, the state and federal program that provides funds
to cover medical needs for financially impoverished citizens. The goal was to expand coverage to those below
the poverty level and to fund as many top priority-ranked services as possible. In 1990, the OHSC listed 1,600
ranked medical procedures ranging “from the most important to the least important” services, based in part on
data about quality of well-being after treatment and cost-effectiveness analysis.
This ranking was widely criticized as unjust and arbitrary. Critics pointed to the state’s ranking of tooth-capping
above appendectomies as a particularly egregious example. Later Oregon reduced the list to 709 ranked services,
while abandoning cost-effectiveness analysis and broadening citizen participation. The goal became to rank
items on the prioritized list by clinical effectiveness and social value. These spare categories need specificity,
and much ingenuity went into these efforts in Oregon.
Within the state, there was initially a strong endorsement of the list of covered services, because the plan
succeeded in expanding access. However, many procedures, such as incapacitating hernias, tonsillectomy, and
adenoidectomy, fell below the cutoff line of the priority list.94 Oregon has modified the plan over the years, with
the consequence of high rates of coverage loss and disenrollment from the plan, difficulty in meeting the needs
of the chronically ill, increased unmet health needs, reduced access to health care services, and financial strain.95
Oregon’s priority list also had trouble managing recurring budget shortfalls.
Just strategies for setting priorities. Even before the Oregon experiment, an influential literature on setting
priorities emerged from health economics, as we discussed in Chapter 6.96 This literature urged use of cost-
effectiveness analysis (CEA), the most important version being cost-utility analysis (CUA). In this strategy,
health benefits are measured in terms of anticipated health gains, and costs are measured in terms of
expenditures of resources. The goal is basically utilitarian: the greatest health benefits for the money expended.
Health benefits are quantified, and an attempt is made to incorporate the outcome directly into public policy by
measuring the impact of interventions on both the length and quality of life.
Representatives of almost all types of theory of justice other than utilitarian-oriented accounts have been
invoked to raise objections to this strategy for setting limits. Charges of discrimination against infants, the
elderly, and people with disabilities (especially those with permanent incapacitation and the terminally ill), as
well as uncertainties about how to judge gains in quality of life, have led many to conclude that the forms of cost
analysis used in Oregon allow unjust and impermissible trade-offs in setting priorities. One major problem is
whether lifesaving interventions such as heart transplantation should lose out altogether in the competition for
priority if other interventions such as arthritis medication provide a greater improvement in quality of life.
To address these questions fairly, numerous decisions must be made, including whether priority should go to
prevention or treatment and whether lifesaving procedures take priority over other interventions. Policymakers
commonly labor to set priorities in the absence of a precise or powerful decision-making instrument and in the
absence of significant systems of accountability.97 Expenditures for treatment, rather than prevention, are far
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higher in the current health care systems of most industrialized nations, and government officials might
justifiably choose, for example, to concentrate on preventing heart disease rather than providing individuals with
heart transplants or artificial hearts. Preventive care is often more effective and more efficient in saving lives,
reducing suffering, raising levels of health, and lowering costs, but preventive care typically reduces morbidity
and premature mortality for unknown “statistical lives,” whereas critical interventions often concentrate on
known “identifiable lives.” Statistical lives are more difficult for legislators and the public to understand and
appreciate than are identifiable lives, which can lead to the neglect of statistical lives.
Many societies have favored identified persons and therefore have allocated resources for critical care, but good
evidence shows that public health expenditures targeted at poorer communities for preventive measures, such as
prenatal care, save in expenditures for future care many times the amount spent for critical care. Accordingly,
moral intuitions, complex concepts, and institutional commitments may distort our thinking about the moral
dilemma of whether to allocate more to rescue persons in medical need or to allocate more to prevent persons
from falling into such need.
No consensus has yet been found on a way to resolve these problems in health policy and biomedical ethics, but
many discussants are now open to the use of various utility-driven strategies to generate data that the public and
policymakers can weigh jointly with other considerations. Public preferences, sound arguments for various
policy options, and knowledge of the literature of ethics and health policy could help replace or constrain
morally objectionable trade-offs indicated by economic analysis.98
Perhaps the major problem, as we noted in Chapter 6 (pp. 254–56), is how to establish constraints that follow
from principles of justice. For example, it is unfair and unacceptable to allow forms of cost-effective rationing
that adversely affect or ignore levels of health among the most disadvantaged populations, in effect worsening
their condition. This generalization is obvious, but it has proved and will continue to prove extremely difficult to
implement at the national level and even more so at the global level.
Rationing
We now address the types of allocation decisions categorized as types 3 and 4 in the above subsection on
“Allocation” (see pp. 300–1). Both are often discussed under the topic of rationing and related terms, such as
triage.99 The choice of terms makes a difference, because each term has a different history in which changes in
meaning have occurred, and each has somewhat different implications.100 Rationing originally did not suggest
harshness or an emergency. It meant a form of allowance, share, or portion, as when food is divided into rations
in the military. Only recently has the term rationing been linked to limited resources and the setting of priorities
in health care budgets.
Rationing has at least three relevant meanings or types. The first is related to “denial of X to individuals from
lack of resources.” Used with this meaning, “rationing” sometimes carries a negative connotation, especially in
public debates where it is used to condemn putatively unwarranted activities of limiting health care. In a market
economy, all types of goods—including health care—are to some extent rationed in this first sense by ability to
pay either directly or indirectly through insurance.
A second sense of rationing derives not from market limits but from social policy limits: The government
determines an allowance or allotment, and individuals are denied access beyond the allotted amount. Rationing
gasoline and types of food during a war is a well-known example, but national health systems that do not allow
purchases of goods or insurance beyond an allotted amount are equally good examples.
Finally, in a third sense of rationing, an allowance or allotment is distributed equitably, but those who can afford
to pay for additional goods are not denied access beyond the allotted amount. In this third sense, rationing
involves elements of each of the first two forms: Public policy fixes an allowance, and those who cannot afford
or cannot arrange for additional units are thereby effectively denied access beyond the allowance.
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We will occasionally use “rationing” in each of the three senses, while concentrating on the third; but we start
with two case studies of rationing. The initial case focuses on rationing by age and the second on rationing
highly expensive treatments, using heart transplantation as an example.
Rationing by age. Policies sometimes exclude or assign a lower priority to persons in a particular age group and
also sometimes provide advantages to a group such as the elderly, as in Medicare entitlements in the United
States. In the United Kingdom implicit rationing policies have excluded elderly, end-stage kidney patients from
kidney dialysis and transplantation because of their age or expected quality of life.101 In another example,
policies for allocating transplantable kidneys in the United States give priority to young patients by assigning
them additional points in the allocation formula.
Various arguments have been proposed to justify the use of age in allocation policies. Some rest on judgments
about the probability of successful treatment; these arguments are usually a matter of medical utility. For
instance, age may be an indicator of the probability of surviving a major operation and also a factor in the likely
success of the procedure. Judgments of the probability of success may include the length of time the recipient of
an organ is expected to survive, a period usually shorter for an older patient than for a younger patient. If one
criterion is quality-adjusted life-years (QALYs, as discussed in Chapter 6, pp. 254–56), younger patients will
typically fare better than older patients in the allocation. An example is found in a policy of the US Organ
Procurement and Transplantation Network, operated by the United Network for Organ Sharing, that focuses on
predicted life years from transplantation as a criterion for allocating kidneys to patients. Critics charge that use
of this assessment unfairly disadvantages older patients by reducing their opportunities to receive kidney
transplants.102
Norman Daniels has offered an influential argument for viewing age as different from properties of race and
gender for purposes of fair health care allocation.103 He appeals to prudential individual decisions about health
care from the perspective of an entire lifetime. Each age group can be conceived as representing a stage in a
person’s life span. The goal is to allocate resources prudently throughout all stages of life within a social system
that provides a fair lifetime share of health care for each citizen. As prudent deliberators, he argues, impartial
persons would choose under conditions of scarcity to distribute health care over a lifetime in a way that
improves their chances of attaining at least a normal life span. Daniels maintains that an impartial person would
reject a pattern that reduces their chances of reaching a normal life span but that increases their chances of living
beyond a normal life span if they do become elderly. Daniels maintains that an impartial person would choose to
shift resources that might otherwise be consumed in prolonging the lives of the elderly to the treatment of
younger persons. This policy increases each person’s chance of living at least a normal life span.
Another and related theory uses a “fair-innings” argument. It considers a person’s whole lifetime experience in
the context of efforts to achieve equality in the distribution of health care. This argument requires that everyone
have an equal chance to get fair innings (a fair period or amount of time) up to a threshold amount, but having
reached the threshold (for example, seventy years of age), one is no longer entitled to receive socially supported
health care. Alan Williams, a fair-innings proponent, stresses that this conception of intergenerational equity
would require, not merely permit, “greater discrimination against the elderly than would be dictated simply by
efficiency objectives.”104 This fair-innings argument claims to offer a justification for denying scarce health care
resources to elderly patients in competition with younger patients.
All policies of age-based rationing face challenges.105 Such rationing runs the risk of perpetuating injustice by
stereotyping the elderly, treating them as scapegoats because of increased health care costs, and creating
unnecessary conflicts between generations. Elderly persons in each generation will complain that, when they
were younger, they did not have access to innovative technologies that were later developed, while using their
taxed money for funding; and they will claim that it would be unfair to deny them beneficial technologies now.
Nonetheless, to protect the health of children and many vulnerable parties, it is likely that societies will have to
set a threshold age beyond which public funding for certain specified conditions is not available. This choice
may be perceived as tragic, yet it may be an entirely just and justifiable policy. Indeed, it may be unjust to adopt
any other policy.
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Still, even if age-based allocations of health care do not necessarily violate the fair-opportunity rule, they have
often been implemented in unjust ways in many countries. These allocations are a prime indicator that societies
need to take systematic, publicly engaged, and closely scrutinized approaches to decisions about rationing by
age and more generally about policies of equitable access.
Rationing heart transplantation. Controversies about rationing heart transplantation began shortly after it
became effective in the 1980s. The number of heart transplants performed is small (3,244 in the United States in
2017), but the cost of each one is large. The current US average billed charge per heart transplant is
approximately $1,382,400 and $2,564,000 for heart-lung transplants.106 Evolving medical and political
circumstances over the years have led to alterations of policy that close one gap in equity only to open other
equity issues. The process that led to the Oregon Health Act in part arose from concerns about the soaring
expense of organ transplants.
Despite the high cost of coverage for heart transplants, arguments have been offered for publicly funding them.
The US federal Task Force on Organ Transplantation, appointed by the US Department of Health and Human
Services, recommended that “a public program should be set up to cover the costs of people who are medically
eligible for organ transplants but who are not covered by private insurance, Medicare, or Medicaid and who are
unable to obtain an organ transplant due to the lack of funds.”107 The task force grounded its recommendation
on two arguments from justice.
The first argument emphasizes the continuity between heart and liver transplants and other forms of medical
care, including kidney transplants, that are already widely accepted as part of the decent minimum of health care
that should be provided in a country as well off as the United States: Heart and liver transplants are comparable
to other funded or fundable procedures in terms of their effectiveness in saving lives and enhancing the quality
of life. In response to the claim that heart and liver transplants are too expensive, the task force argued that any
burdens created by saving public funds for health should be distributed equitably rather than imposed on
particular groups of patients, such as those suffering from end-stage heart or liver failure. It would be an
arbitrary and incoherent policy to exclude one lifesaving procedure while funding others of comparable
lifesaving potential and cost.
The second argument for equitable access focuses on practices of organ donation and procurement. Public
officials often participate in efforts to increase the supply of donated organs by appealing to all citizens and
residents to donate organs. It would be unfair and perhaps exploitative to solicit people, rich and poor alike, to
donate organs if the organs are then distributed on the basis of ability to pay.108 Yet, in practice in the United
States, people who do not have health insurance are approximately twenty times more likely to be postmortem
organ donors than they are to receive an organ transplant.109 Arguably, it is morally inconsistent to prohibit the
sale of organs while distributing donated organs according to ability to pay, and it is morally problematic to
distinguish buying an organ for transplantation from buying an organ transplant procedure when a donated organ
is used in the procedure; yet policies and actions that involve buying an organ for transplantation are often
morally condemned without also condemning the systems that allow buying an organ transplant procedure.
These arguments are attractive appeals to coherence, but they do not establish the conclusion that justice requires
expensive health care irrespective of its cost or that it is arbitrary to use a reasonably structured system of
rationing that involves tough choices in setting priorities. Once a society has achieved a fair threshold
determination of funding at the decent-minimum level, it legitimately may select some procedures while
excluding others even when they have equal lifesaving potential and equal cost, as long as it identifies relevant
differences through a fair procedure. Substantial public participation along the way will help legitimate such
determinations. In the end, we should situate recommendations about funding heart transplants and all other
expensive treatments in the larger context of a just social policy of allocation that will require systematic and fair
setting of priorities and limits.
Rationing Scarce Treatments to Patients
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Health care professionals and policymakers often must decide who will receive an available but scarce medical
resource that cannot be provided to all needy people.
We concentrate here on priority methods for selecting recipients in urgent circumstances. Two broad approaches
vie for primacy: (1) a utilitarian strategy that emphasizes overall maximum benefit for both patients and society,
and (2) an egalitarian strategy that emphasizes the equal worth of persons and fair opportunity. We argue that
these two broad approaches can justifiably and coherently be combined in many policies and practices of
distribution and allocation, often through a process of specification.
We defend a system that uses two sets of substantive standards and procedural rules for rationing scarce medical
resources: (1) criteria and procedures to determine an initial qualifying pool of potential recipients, such as
patients eligible for heart transplantation; and (2) criteria and procedures for final selection of the recipients of
particular treatments such as a heart donated for transplantation.110 For purposes of simplicity—and because we
have previously focused on the relevance and irrelevance of ability to pay for care, whether directly or indirectly
through insurance—we are not here including a so-called green screen, that is, a financial screen used to
determine the eligible pool of candidates.
Screening candidates for treatment. Criteria for screening potential recipients of care fall into three basic
categories: constituency, progress of science, and prospect of success.111
Constituency factor. The first criterion uses social rather than medical factors. It is determined by clientele
boundaries, such as veterans served by medical centers established for veterans; geographic or jurisdictional
boundaries, such as being citizens of a legal jurisdiction served by a publicly funded hospital; and ability to pay,
such as the wealthy and the highly insured. These criteria are entirely nonmedical, and they involve moral
judgments that often are partial, not impartial, as in policies that exclude noncitizens or include only veterans.
Each of these clientele boundaries is sometimes acceptable, but their past use has often been dubious.
For example, the Task Force on Organ Transplantation in the United States proposed that donated organs be
considered national, public resources to be distributed primarily according to both the needs of patients and the
probability of their successful transplantation.112 The task force judged that foreign nationals do not have the
same moral claim on organs donated in the United States as do its own citizens and residents. Its position
apparently is that citizenship and residency are morally relevant properties for determining distribution.
However, the task force also determined that compassion and fairness support the admission of some nonresident
aliens. In a split vote, it recommended that nonresident aliens comprise no more than 10% of the waiting list for
deceased donor kidneys and that all patients on the waiting list, including nonresident aliens, have access to
organs according to the same criteria of need, probability of success, and time on the waiting list.113
Progress of science. A second criterion for screening potential recipients of care, that of scientific progress, is
research oriented and is relevant during an experimental phase in the development of a treatment. For example,
physician-investigators may justifiably exclude patients who also suffer from other diseases that might obscure
the research result. The objective is to determine whether an experimental treatment is effective and how it can
be improved. This criterion rests on moral and prudential judgments about the efficient and proper use of
resources. The factors used to include or to exclude patients from participation in such research can be
controversial, especially if persons who potentially could benefit are excluded for reasons of scientific efficiency
or persons who are unlikely to benefit are continued in a clinical trial to make results of the trial acceptable to
the scientific community. However, achieving scientific validity is critically important in research, and progress
of science is a relevant screening criterion.
Prospect of success. Whether a treatment is experimental or routine, the likelihood of success in treating the
patient is a relevant criterion because scarce medical resources should be distributed only to patients who have a
reasonable chance of benefit. Ignoring this factor is unjust if it wastes resources, as in the case of organs that can
be transplanted only once. Heart transplant surgeons, for example, might be tempted to list their patients as
urgent priority candidates for an available heart because the patients will soon die if they do not receive a
transplant, even though some of these patients may be virtually certain to die even if they do receive the heart.
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Good candidates could be passed over in this process. A classification and queuing system that permits the
urgency of a situation alone to determine priority is as unjust as it is inefficient. For these reasons, accountability
for judgments of urgency should be sought through oversight mechanisms that either scrutinize listing criteria
before they are used or review the outcomes after their use—or both.
Selecting recipients. We turn now to standards for final selection of recipients of particular scarce treatments.
Controversy centers on the use of judgments of medical utility and social utility and impersonal mechanisms
such as lotteries and queuing.
Medical utility. We here assume the generally accepted rule that judgments about medical utility should figure
into decisions to ration scarce medical resources. Differences in patients’ prospects for successful treatment are
relevant considerations, as is maximizing the number of lives saved.
Rationing based on medical utility does not necessarily violate the requirements of egalitarian justice. For
example, judgments of medical utility and of egalitarian justice, as exemplified in the fair-innings argument
discussed earlier in this chapter, converge around priority for younger patients over older ones. Other things
being equal, medical utility favors younger patients because they can generally be expected to have more
quality-adjusted life-years ahead of them than older patients, and, other things being equal, egalitarian justice
assigns them priority because they have not yet had their “fair innings” or their chances to move through stages
in the life cycle.114
However, both medical need and probability of success, as components of medical utility, are value-laden
concepts, and uncertainty often exists about likely outcomes and about the factors that contribute to success. For
example, many kidney transplant surgeons dispute the importance of having a good tissue match, because minor
tissue mismatches can be managed by immunosuppressant medications that reduce the body’s tendency to reject
transplanted organs. Insisting on the seemingly objective criterion of tissue match in distributing kidneys also
can disadvantage members of racial minorities and persons with a rare tissue type, as we saw earlier in this
chapter.
Criteria of medical need and probability of success sometimes come into conflict. In intensive care units,
attempts to save a patient whose need is medically urgent sometimes inappropriately consume resources that
could be used to save other people who will die without those resources.115 A rule of giving priority to the
sickest patients or those with the most urgent medical needs will produce unfairness when it will lead to
inefficient uses of resources. Rationing schemes that either minimize or altogether exclude considerations of
medical utility are indefensible, but judgments of medical utility are not always sufficient by themselves. This
problem leads to questions about whether chance and queuing may legitimately be used in limited ways when
selecting recipients.
Impersonal mechanisms of chance and queuing. We began this chapter by noting the oddity and unacceptability
of using a lottery to distribute all social positions. However, a lottery or another system of chance is not always
odd and unacceptable.116 If medical resources are scarce and not divisible into portions, and if no major
disparities exist in medical utility for patients (particularly when selection determines life or death), then
considerations of fair opportunity and equal respect may justify a lottery, randomization, or queuing—depending
on which procedure is the most appropriate and feasible in the circumstances.
Similar judgments have supported the use of lotteries to determine who would gain access to new drugs
available only in limited supply, either because the drugs had only recently been approved or because they
remained experimental. For instance, Berlex Laboratories held a lottery to distribute Betaseron, a new
genetically engineered drug that appeared to slow the deterioration caused by multiple sclerosis, and several
drug companies held lotteries to distribute new classes of compounds to patients with AIDS. The symbolic value
of such lotteries is morally significant if they send the message that all persons deserve and will receive an equal
chance at social goods.117 These methods also determine selections with little investment of time and financial
resources and can create less stress for all involved, including patients.118 Even bypassed candidates may feel
less distress at being rejected by chance than by judgments of comparative merit.
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However, some impersonal selection procedures present both theoretical and practical problems. For example,
the rule “first come, first served” carries the potential for injustice. Under some conditions a patient already
receiving a particular treatment has a severely limited chance of survival, virtually to the point of futility,
whereas other patients who need the treatment have a far better chance of survival. The question also arises
whether a rule of “first come, first served” implies that those already receiving treatment have absolute priority
over those who arrive later but have either more urgent needs or better prospects of success. Such a system may
eventuate in injustices and should be avoided unless demonstrated to be justified in the context in which it is
used.
Intensive care units (ICUs) provide a good example. Although admission to the ICU establishes a presumption
in favor of continued treatment, it does not give a person an absolute claim. In decisions in neonatal intensive
care about the use of extracorporeal membrane oxygenation (ECMO), a form of cardiopulmonary bypass used to
support newborns with life-threatening respiratory failure, a truly scarce resource is being provided, because it is
not widely available and requires the full-time presence of well-trained personnel. Robert Truog argues, rightly
in our judgment, that ECMO should be withdrawn from a newborn with a poor prognosis in favor of another
with a good prognosis if the latter is far more likely to survive, requires the therapy, and cannot be safely
transferred to another facility.119 Such displacement of a child from the ICU requires justification, but it need
not constitute abandonment or injustice if other forms of care are provided.
Whether queuing or chance is preferable will depend largely on practical considerations, but queuing appears to
be feasible and acceptable in many health care settings, including emergency medicine, ICUs, and organ
transplant lists. A complicating factor is that some people do not enter the queue or a lottery in time because of
factors such as slowness in seeking help, inadequate or incompetent medical attention, delay in referral, or overt
discrimination. A system is probably unfair if some people can gain an advantage in access over others because
they are better educated, better connected, or better situated to pay for frequent visits to physicians.
Social utility. Although criteria of social utility are suspect and controversial, the comparative social value of
potential recipients is sometimes a relevant and even decisive consideration. An analogy comes from World War
II, when, according to some reports, the scarce resource of penicillin was distributed to US soldiers suffering
from venereal disease rather than to those suffering from battle wounds. The rationale was military need: The
soldiers suffering from venereal disease could be restored to battle more quickly.120
An argument in favor of social-utilitarian selection is that medical institutions and personnel are trustees of
society and must consider the probable future contributions of patients. We argue just below that, in rare and
exceptional cases involving persons of critical social importance, criteria of social value—narrow and specific as
opposed to broad and general social utility—are appropriately overriding. However, in general we need to
protect the relationship of personal care and trust that would be threatened if physicians and other health care
professionals regularly looked beyond their patients’ needs to society’s needs.
Triage: medical utility and narrow social utility. Some have invoked the model of triage, a French term meaning
“sorting,” “picking,” or “choosing.” It has been applied to sorting items such as wool and coffee beans according
to their quality. In the delivery of health care, triage is a process of developing and using criteria for
prioritization. It has been used in war, in community disasters, and in emergency rooms where injured persons
have been sorted for medical treatment according to their needs and prospects. Decisions to admit and to
discharge patients from ICUs sometimes involve triage. The objective is to use available medical resources as
effectively and as efficiently as possible, a utilitarian rationale.121
Triage decisions usually appeal to medical utility rather than social utility. For example, disaster victims are
generally sorted according to medical need. Those who have major injuries and will die without immediate help,
but who can be salvaged, are ranked first; those whose treatment can be delayed without immediate danger are
ranked second; those with minor injuries are ranked third; and those for whom no treatment will be efficacious
are ranked fourth. This priority scheme is fair and does not involve judgments about individuals’ comparative
social worth.
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However, narrow or specific judgments of comparative social worth are both inescapable and acceptable in some
situations.122 Consider, for example, an earthquake disaster in which some injured survivors are medical
personnel who suffer only minor injuries. These medical personnel can justifiably receive priority for treatments
if they are needed to help others. Similarly, in an outbreak of pandemic influenza, it is justifiable to inoculate
physicians and nurses first to enable them to care for others. Under such conditions, a person may receive
priority for treatment on grounds of narrow social utility if and only if his or her contribution is indispensable to
attaining a major social goal.
It is generally legitimate to invoke medical utility followed by the use of chance or queuing for scarce resources
when medical utility is roughly equal for eligible patients. It is also sometimes legitimate to invoke narrow
considerations of social utility to give priority to individuals who fill social roles that are essential in achieving a
better overall societal outcome. This nexus of standards should prove to be both coherent and stable, despite the
mixture of appeals to egalitarian justice and utilitarian justice.
In certain contexts, such as allocation in a public health emergency resulting from pandemic influenza or a
bioterrorist attack and in the allocation of organs donated by the public, it is valuable, perhaps indispensable, to
engage the public when setting the allocation criteria.123 No set of criteria is the only acceptable set, and public
trust and support are essential, particularly when the public’s cooperation is needed in widespread health crises
and in organ donation. In most situations, the set of allocation criteria must be generally accepted as morally
justified norms of justice to secure public cooperation.
CONCLUSION
We have examined an array of approaches to justice, including six different theories of justice. Although we
have often most closely examined egalitarian and utilitarian approaches, we have stayed in touch with features
of all six of the theories of justice analyzed early in this chapter. We have maintained that no single theory of
justice or system of distributing health care is solely sufficient for constructive reflection on health policy.
However, we have noted that two recent theories are especially important for their connections to the value we
place on health, public health, and health care.
The richness of our moral practices and beliefs helps explain why diverse theories of justice have received
skillful defenses. Absent a clear social consensus about these theories of justice, we can expect that public
policies will sometimes emphasize elements of one theory and at other times elements of another theory. We
have done so ourselves in this chapter. However, the existence of these several theories does not justify the
tragically piecemeal approach that many countries have taken to their health care systems.
Countries lacking a comprehensive and coherent system of health care financing and delivery are destined to
continue on the trail of higher costs and larger numbers of unprotected citizens. They need to improve both
utility (efficiency) and justice (fairness and equality). Although justice and utility may appear to be opposing
values, and have often been presented as such in moral theory, both values are indispensable in shaping a health
care system. Creating a more efficient system by cutting costs and providing appropriate incentives can conflict
with the goal of universal access to health care, and justice-based goals of universal coverage also may make the
system less efficient. Inevitably, trade-offs between equality and efficiency will occur in almost all social
systems.
Policies of just access to health care, strategies of efficiency in health care institutions, and global needs for the
reduction of health-impairing conditions dwarf in social importance every other issue considered in this book.
Global justice and just national health care systems are distant goals for the many millions of individuals who
encounter entrenched barriers to access to health care and to better health. Every society must ration its
resources, but many societies can close gaps in fair rationing more conscientiously than they have to date.
We have supported a general moral perspective from which to approach these problems. In particular, we have
proposed recognition of global rights to health and enforceable rights to a decent minimum of health care in
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nation-states, while recognizing that adequately securing these rights in political states and globally is an
exceedingly ambitious and difficult path to pursue even when the goals of policy are strongly supported by
principles and theories of justice.
Our accounts in this chapter often recognize the legitimacy of trade-offs between efficiency and justice, a
position that mirrors our insistence throughout this book on the possibility of contingent conflicts between
principles such as beneficence and justice and the need for trade-offs between them when conflicts occur.
NOTES
1. 1. Jorge Luis Borges, Labyrinths (New York: New Directions, 1962), pp. 30–35. A lottery may be a
justifiable mechanism in some systems of distribution, as we note later in this chapter.
2. 2. Compare the analysis in Samuel Fleishacker, A Short History of Distributive Justice (Cambridge, MA:
Harvard University Press, 2005).
3. 3. On the efforts of AIDS activists, see our Chapter 6, at the beginning of the subsection “Expanded access
to investigational products,” including references in notes (pp. 224–27). See also Carol Levine, “Changing
Views of Justice after Belmont: AIDS and the Inclusion of ‘Vulnerable’ Subjects,” in The Ethics of
Research Involving Human Subjects: Facing the 21st Century, ed. Harold Y. Vanderpool (Frederick, MD:
University Publishing Group, 1996); and Leslie Meltzer and James F. Childress, “What Is Fair Subject
Selection?” in The Oxford Textbook of Clinical Research Ethics, ed. Ezekiel J. Emanuel et al. (New York:
Oxford University Press, 2008), pp. 377–85.
4. 4. See further Guido Calabresi and Philip Bobbitt, Tragic Choices (New York: Norton, 1978).
5. 5. International Union … UAW v. Johnson Controls, 499 U.S. 187 (1991) 111 S.Ct. 1196.
6. 6. John Stuart Mill, Utilitarianism, in vol. 10 of the Collected Works of John Stuart Mill (Toronto:
University of Toronto Press, 1969), chap. 5.
7. 7. Locke, Two Treatises of Government, ed. Peter Laslett (Cambridge: Cambridge University Press, 1960),
preface, bk. 1.6.67 and bk. 2.7.87. On classical libertarianism generally, see Eric Mack and Gerald F.
Gaus, “Classical Liberalism and Libertarianism: The Liberty Tradition,” in Handbook of Political Theory,
ed. Gaus and Chandran Kukathas (London: Sage, 2004), pp. 115–30.
8. 8. Robert Nozick, Anarchy, State, and Utopia (New York: Basic Books, 1974), esp. pp. 149–82.
9. 9. Rawls, “Kantian Constructivism in Moral Theory” (The Dewey Lectures), Journal of Philosophy 77
(1980): 519.
10. 10. Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971; rev. ed., 1999), pp. 60–
67, 302–3 (1999: 52–58). Rawls later instructively restated, and partially reordered, these principles,
giving reasons for their revision, in Justice as Fairness: A Restatement, ed. Erin Kelly (Cambridge, MA:
Harvard University Press, 2001), pp. 42–43. This work has influenced the presentations made here. For an
interesting handling of egalitarianism and the difference principle almost forty years after Rawls published
his book, see G. A. Cohen, Rescuing Justice and Equality (Cambridge MA: Harvard University Press,
2008), especially pp. 68–86 and 151–65.
11. 11. Daniels, Just Health: Meeting Health Needs Fairly (New York: Cambridge University Press, 2008),
especially pp. 29–63; and see also Daniels, Just Health Care (New York: Cambridge University Press,
1985), pp. 34–58. For subsequent investigations of relevant problems of egalitarianism, see Shlomi Segall,
Why Inequality Matters: Luck Egalitarianism, Its Meaning and Value (Cambridge: Cambridge University
Press, 2016).
12. 12. Leading so-called “communitarian” theorists avoid use of the label, including Alasdair MacIntyre,
Charles Taylor, Michael Walzer, and Michael Sandel.
13. 13. See, for example, Michael Sandel, Democracy’s Discontent: America in Search of a Public Philosophy
(Cambridge, MA: Harvard University Press, 1996); Sandel, Public Philosophy: Essays on Morality in
Politics (Cambridge, MA: Harvard University Press, 2005); Alasdair MacIntyre, After Virtue, 3rd ed.
(Notre Dame, IN: University of Notre Dame Press, 2007); Michael Walzer, “The Communitarian Critique
of Liberalism,” Political Theory 18 (1990): 6–23; and Shlomo Avineri and Avner de-Shalit, eds.,
Communitarianism and Individualism (Oxford: Oxford University Press, 1992).
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14. 14. Charles Taylor, “Atomism,” in Powers, Possessions, and Freedom, ed. Alkis Kontos (Toronto:
University of Toronto Press, 1979): 39–62; and, for his later views, Taylor, A Secular Age (Cambridge:
Belknap Press of Harvard University Press, 2007, and paperback edition, 2018).
15. 15. Two instructive theories are Alasdair MacIntyre, Whose Justice? Which Rationality? (Notre Dame, IN:
University of Notre Dame Press, 1988), esp. pp. 1, 390–403; and Michael Walzer, Spheres of Justice: A
Defense of Pluralism and Equality (New York: Basic Books, 1983), esp. pp. 86–94. For other instructive
communitarian theories in bioethics, see Daniel Callahan, “Individual Good and Common Good: A
Communitarian Approach to Bioethics,” Perspectives in Biology and Medicine 46 (2003): 496–507, esp.
500ff; Callahan, “Principlism and Communitarianism,” Journal of Medical Ethics 29 (2003): 287–91;
Mark G. Kuczewski, Fragmentation and Consensus: Communitarian and Casuist Bioethics (Washington:
Georgetown University Press, 1997); and the wide-ranging “liberal communitarianism” in Ezekiel
Emanuel, The Ends of Human Life: Medical Ethics in a Liberal Polity (Cambridge, MA: Harvard
University Press, 1991).
16. 16. See James L. Nelson, “The Rights and Responsibilities of Potential Organ Donors: A Communitarian
Approach,” Communitarian Position Paper (Washington, DC: Communitarian Network, 1992); James
Muyskens, “Procurement and Allocation Policies,” Mount Sinai Journal of Medicine 56 (1989): 202–6;
and Pradeep Kumar Prabhu, “Is Presumed Consent An Ethically Acceptable Way of Obtaining Organs for
Transplant?” Journal of the Intensive Care Society (as published May 21, 2018), available at
http://journals.sagepub.com/doi/full/10.1177/1751143718777171 (accessed August 4, 2018).
17. 17. Daniel Callahan, What Kind of Life (New York: Simon & Schuster, 1990), ch. 4, esp. pp. 105–13; and
Callahan, Setting Limits (New York: Simon & Schuster, 1987), esp. pp. 106–14. Downplaying autonomy
in the context of public health, Callahan argues for social pressure, including stigmatization and shaming,
as legitimate efforts to change patterns of obesity, combined with government actions. See his “Obesity:
Chasing an Elusive Epidemic,” Hastings Center Report 43, no. 1 (January–February 2013): 34–40.
18. 18. See our discussion of Aristotelian theories of virtue and moral excellence in Chapter 2, pp. 49–52, and
the modest extension of our account in Chapter 9, pp. 409–16.
19. 19. For an orientation to capability theories and their connection to theories of justice, see Ingrid Robeyns,
“The Capability Approach,” in The Stanford Encyclopedia of Philosophy (Winter 2016 Edition), ed.
Edward N. Zalta, available at https://plato.stanford.edu/archives/win2016/entries/capability-approach/
(accessed July 22, 2018); Martha Nussbaum, Women and Human Development: The Capabilities
Approach (Cambridge: Cambridge University Press, 2000); Harry Brighouse and Ingrid Robeyns, eds.,
Measuring Justice: Primary Goods and Capabilities (Cambridge: Cambridge University Press, 2010),
especially the concluding essay by Amartya Sen, “The Place of Capability in a Theory of Justice”; Henry
S. Richardson, “The Social Background of Capabilities for Freedoms,” Journal of Human Development 8
(2007): 389–414; and Jennifer Prah Ruger, Health and Social Justice (New York: Oxford University
Press, 2009).
20. 20. Rawls, Justice as Fairness: A Restatement (Cambridge, MA: Harvard University Press, 2001), pp. 58–
61.
21. 21. Amartya Sen, The Idea of Justice (Cambridge, MA: Belknap Press of Harvard University Press, 2009),
pp. 231–33. See also Sen, “Capability and Well-Being,” in The Quality of Life, ed. Martha C. Nussbaum
and Amartya K. Sen (Oxford: Clarendon Press, 1993), pp. 30–53; Sen, “Elements of a Theory of Human
Rights,” Philosophy & Public Affairs 32 (2004): 315–56; Sen, “Human Rights and Capabilities,” Journal
of Human Development, 6 (2005): 151–66; and Sen, Commodities and Capabilities (Oxford: Oxford
University Press, 1999). See further Wiebke Kuklys, Amartya Sen’s Capability Theory: Theoretical
Insights and Empirical Applications, with a Foreword by Amartya Sen (Berlin: Springer, 2005).
22. 22. Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Cambridge, MA:
Harvard University Press, 2006), esp. pp. 81–95, 155–223, 281–90, 346–52, 366–79; and, on her
connection to Sen, Nussbaum, “Capabilities as Fundamental Entitlements: Sen and Social Justice,”
Feminist Economics 9 (2003): 33–59.
23. 23. Nussbaum, Frontiers of Justice, pp. 76–81, 392–401; and Nussbaum, “Human Dignity and Political
Entitlements,” in President’s Council on Bioethics, Human Dignity and Bioethics: Essays Commissioned
by the President’s Council on Bioethics (Washington, DC: President’s Council, March 2008), pp. 351,
377–78. See further Nussbaum, Creating Capabilities (Cambridge, MA: Harvard University Press, 2011).
24. 24. Nussbaum, Frontiers of Justice, p. 175.
http://journals.sagepub.com/doi/full/10.1177/1751143718777171
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25. 25. Nussbaum, “Human Dignity and Political Entitlements,” pp. 357–59, 363.
26. 26. Nussbaum, “The Capabilities Approach and Animal Entitlements,” in Oxford Handbook of Animal
Ethics, ed. Tom L. Beauchamp and R. G. Frey (New York: Oxford University Press, 2011), pp. 237–38.
See also her earlier statement in Frontiers of Justice, chap. 6.
27. 27. Nussbaum, Frontiers of Justice, pp. 2, 155, 166. Sridhar Venkatapuram presents another demanding
capability theory dealing with important problems of bioethics. In his account, all humans have a right to
“the capability to be healthy.” Health Justice (Cambridge: Polity Press, 2011); for the general theory in
this book, see the “Introduction” (pp. 1–38) and “Conclusion” (pp. 233–38).
28. 28. Madison Powers and Ruth R. Faden, Social Justice: The Moral Foundations of Public Health and
Health Policy (New York: Oxford University Press, 2006), pp. 16–29. In their second book on justice,
Structural Injustice: Power, Advantage, and Human Rights (New York: Oxford University Press, 2019),
these authors deepen their theory of injustice and what morally must be done about it. This second book is
heavily philosophical but still responsive to and inspired by everyday structural injustices and social
movements; chapter 2 is a detailed extension of their theory of the core elements of well-being, including
a revision of the names of the elements. We here followed their second book.
29. 29. Powers and Faden, Social Justice, pp. 37–41.
30. 30. The title of the first chapter in the first Powers-Faden book—and a major topic in their treatment of
justice.
31. 31. Powers and Faden, Social Justice, esp. pp. 62–79, 90–95, 194–95.
32. 32. Rawls, A Theory of Justice, pp. 73–74 (1999: 63–65) (italics added).
33. 33. See Bernard Williams, “The Idea of Equality,” in Justice and Equality, ed. Hugo Bedau (Englewood
Cliffs, NJ: Prentice Hall, 1971), p. 135; Jeff McMahan, “Cognitive Disability, Misfortune, and Justice,”
Philosophy & Public Affairs 25 (1996): 3–35; and Janet Radcliffe Richards, “Equality of Opportunity,”
Ratio 10 (1997): 253–79.
34. 34. Pertinent to the United States, see Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, eds., for
the Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, Institute
of Medicine (now National Academy of Medicine), Unequal Treatment: Confronting Racial and Ethnic
Disparities in Health Care (Washington, DC: National Academies Press, 2003); and Donald A. Barr,
Health Disparities in the United States: Social Class, Race, Ethnicity, and Health, 2nd ed. (Baltimore,
MD: Johns Hopkins University Press, 2014).
35. 35. Ivor L. Livingston, ed., Praeger Handbook of Black American Health: Policies and Issues behind
Disparities in Health, 2nd ed. (Westport, CT: Praeger, 2004), 2 vols.; Kathryn S. Ratcliff, Women and
Health: Power, Technology, Inequality, and Conflict in a Gendered World (Boston: Allyn & Bacon, 2002);
and Nicole Lurie, “Health Disparities—Less Talk, More Action,” New England Journal of Medicine 353
(August 18, 2005): 727–28.
36. 36. See Edward L. Hannan et al., “Access to Coronary Artery Bypass Surgery by Race/Ethnicity and
Gender among Patients Who Are Appropriate for Surgery,” Medical Care 37 (1999): 68–77; Ashish K.
Jha et al., “Racial Trends in the Use of Major Procedures among the Elderly,” New England Journal of
Medicine 353 (August 18, 2005): 683–91; and T. M. Connolly, R. S. White, D. L. Sastow, et al., “The
Disparities of Coronary Artery Bypass Grafting Surgery Outcomes by Insurance Status: A Retrospective
Cohort Study, 2007–2014,” World Journal of Surgery 42, no. 10 (October 1, 2018): 3240–49.
37. 37. R. H. Mehta et al., “Association of Hospital and Physician Characteristics and Care Processes with
Racial Disparities in Procedural Outcomes among Contemporary Patients Undergoing Coronary Artery
Bypass Grafting Surgery,” Circulation 133, no. 2 (January 12, 2016): 124–30.
38. 38. Viola Vaccarino et al., “Sex and Racial Differences in the Management of Acute Myocardial
Infarction, 1994 through 2002,” New England Journal of Medicine 353 (August 18, 2005): 671–82; and
Karen M. Freund et al., “Disparities by Race, Ethnicity, and Sex in Treating Acute Coronary Syndromes,”
Journal of Women’s Health 21 (2012): 126–32. A review of Medicare data from 1992 to 2010 determined
that disparities in treating acute myocardial infarction “have declined modestly but remain a problem,
particularly with respect to patient sex.” See Jasvinder A. Singh, Xin Lu, Said Ibrahim, and Peter Cram,
“Trends in and Disparities for Acute Myocardial Infarction: An Analysis of Medicare Claims Data from
1992 to 2010,” BMC Medicine 12 (2014): 190.
39. 39. “Cancer Screening—United States, 2010,” Morbidity and Mortality Weekly Report 61 (January 27,
2012): 41–45; Ingrid J. Hall, Florence K. L. Tangka, Susan A. Sabatino, et al., “Patterns and Trends in
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Cancer Screening in the United States,” Preventing Chronic Disease 15 (July 26, 2018): 170465; and
Tamryn F. Gray, Joycelyn Cudjoe, Jeanne Murphy, et al., “Disparities in Cancer Screening Practices
among Minority and Underrepresented Populations,” Seminars in Oncology Nursing 33, no. 2 (May
2017): 184–98. For data about cancer disparities, see National Cancer Institute, “Cancer Disparities,”
updated March 29, 2018, available at https://www.cancer.gov/about-cancer/understanding/disparities
(accessed November 17, 2018).
40. 40. See A. O. Laiyemo et al., “Race and Colorectal Cancer Disparities,” Journal of the National Cancer
Institute 102 (April 21, 2010): 538–46; John Z. Ayanian, “Racial Disparities in Outcomes of Colorectal
Cancer Screening: Biology or Barriers to Optimal Care?” Journal of the National Cancer Institute 102
(April 21, 2010): 511–13; and Venkata S. Tammana and Adeyinka O. Laiyemo, “Colorectal Cancer
Disparities: Issues, Controversies and Solutions,” World Journal of Gastroenterology 20, no. 4 (January
28, 2014): 869–76. For some positive signs of decreasing disparities regarding colorectal cancer, see
Folasade P. May, Beth A. Glenn, Catherine M. Crespi, et al., “Decreasing Black-White Disparities in
Colorectal Cancer Incidence and Stage at Presentation in the United States,” Cancer Epidemiology,
Biomarkers & Prevention 26, no. 5 (May 2017): 762–68.
41. 41. Salimah H. Meghani et al., “Advancing a National Agenda to Eliminate Disparities in Pain Care:
Directions for Health Policy, Education, Practice, and Research,” Pain Medicine 13 (January 2012): 5–28.
42. 42. Smedley, Stith, and Nelson, eds., Unequal Treatment: Confronting Racial and Ethnic Disparities in
Health Care. For critical analyses of this report, see the special issue of Perspectives in Biology and
Medicine 48, no. 1 suppl. (Winter 2005).
43. 43. Nakela Cook et al., “Racial and Gender Disparities in Implantable Cardioverter-Defibrillator
Placement: Are They Due to Overuse or Underuse?” Medical Care Research and Review 68 (April 2011):
226–46. For a focus on underuse, see Paul L. Hess, Adrian F. Hernandez, Deepak L. Bhatt, et al., “Sex and
Race/Ethnicity Differences in Implantable Cardioverter-Defibrillator Counseling and Use among Patients
Hospitalized with Heart Failure: Findings from the Get With The Guidelines-Heart Failure Program,”
Circulation 134 (2016): 517–26; and Quinn Capers IV and Zarina Sharalaya, “Racial Disparities in
Cardiovascular Care: A Review of Culprits and Potential Solutions,” Journal of Racial and Ethnic Health
Disparities 1, no. 3 (2014): 171–80.
44. 44. Keith Wailoo, Pain: A Political History (Baltimore, MD: Johns Hopkins University Press, 2014).
45. 45. Kelly M. Hoffman, Sophie Trawalter, Jordan R. Axt, and M. Norman Oliver, “Racial Bias in Pain
Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between
Blacks and Whites,” PNAS 113, no. 16 (2016): 4296–301.
46. 46. Alexander R. Green, Dana R. Carney, Daniel J. Pallin, et al., “Implicit Bias among Physicians and Its
Prediction of Thrombolysis Decisions for Black and White Patients,” Journal of General Internal
Medicine 22, no. 9 (September 2007): 1231–38. On implicit bias among health care professionals and in
the health care system and its possible impact on disparities, see Dayna Bowen Matthew, Just Medicine: A
Cure for Racial Inequality in American Health Care (New York: New York University Press, 2015), esp.
chaps. 2–7; William J. Hall, Mimi V. Chapman, Kent M. Lee, et al., “Implicit Racial/Ethnic Bias among
Health Care Professionals and Its Influence on Health Care Outcomes: A Systematic Review,” American
Journal of Public Health 105, no. 12 (December 2015): e60–e76; Irene V. Blair, John F. Steiner, and
Edward P. Havranek, “Unconscious (Implicit) Bias and Health Disparities: Where Do We Go from Here?”
Permanente Journal 15, no. 2 (Spring 2011): 71–78; Erin Dehon, Nicole Weiss, Jonathan Jones et al., “A
Systematic Review of the Impact of Implicit Racial Bias on Clinical Decision Making,” Academic
Emergency Medicine 24, no. 8 (2017): 895–904.
47. 47. Katrina Armstrong, Chanita Hughes-Halbert, and David A. Asch, “Patient Preferences Can Be
Misleading as Explanations for Racial Disparities in Health Care,” Archives of Internal Medicine 166
(May 8, 2006): 950–54; Norman G. Levinsky, “Quality and Equity in Dialysis and Renal
Transplantation,” New England Journal of Medicine 341 (November 25, 1999): 1691–93.
48. 48. John P. Roberts et al., “Effect of Changing the Priority for HLA Matching on the Rates and Outcomes
of Kidney Transplantation in Minority Groups,” New England Journal of Medicine 350 (February 5,
2004): 545–51, at 551. See also Jon J. van Rood, “Weighing Optimal Graft Survival through HLA
Matching against the Equitable Distribution of Kidney Allografts,” New England Journal of Medicine 350
(February 5, 2004): 535–36.
https://www.cancer.gov/about-cancer/understanding/disparities
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49. 49. Erin Hall et al., “Effect of Eliminating Priority Points for HLA-B Matching on Racial Disparities in
Kidney Transplant Rates,” American Journal of Kidney Diseases 58 (2011): 813–16. See also John S. Gill,
“Achieving Fairness in Access to Kidney Transplant: A Work in Progress,” American Journal of Kidney
Diseases 58 (2011): 697–99.
50. 50. See David J. Taber, Mulugeta Gebregziabher, Kelly J. Hunt, et al., “Twenty Years of Evolving Trends
in Racial Disparities for Adult Kidney Transplant Recipients,” Kidney International 90, no. 4 (October
2016): 878–87; and Tanjala S. Purnell, Xun Luo, Lauren M. Kucirka, et al., “Reduced Racial Disparity in
Kidney Transplant Outcomes in the United States from 1990 to 2012,” Journal of the American Society of
Nephrology 27 (2016): 2511–18.
51. 51. Winfred W. Williams and Francis L. Delmonico, “The End of Racial Disparities in Kidney
Transplantation? Not So Fast!,” Journal of the American Society of Nephrology 27, no. 8 (2016): 2224-26.
52. 52. Robert Bornholz and James J. Heckman, “Measuring Disparate Impacts and Extending Disparate
Impact Doctrine to Organ Transplantation,” Perspectives in Biology and Medicine 48, no. 1 suppl. (Winter
2005): S95–122.
53. 53. Carl Tishler and Suzanne Bartholomae, “The Recruitment of Normal Healthy Volunteers,” Journal of
Clinical Pharmacology 42 (2002): 365–75.
54. 54. Tom L. Beauchamp, Bruce Jennings, Eleanor Kinney, and Robert Levine, “Pharmaceutical Research
Involving the Homeless,” Journal of Medicine and Philosophy 27 (2002): 547–64; Toby L. Schonfeld,
Joseph S. Brown, Meaghann Weniger, and Bruce Gordon, “Research Involving the Homeless,” IRB 25
(September–October 2003): 17–20; and, more broadly on the use of at-risk persons as volunteers in
research, Ezekiel J. Emanuel et al., “Quantifying the Risks of Non-Oncology Phase 1 Research in Healthy
Volunteers: Meta-Analysis of Phase 1 Studies,” BMJ 350 (2015), available at
https://www.researchgate.net/publication/280151725_Quantifying_the_Risks_of_Non-
Oncology_Phase_I_Research_in_Healthy_Volunteers_Meta-Analysis_of_Phase_I_Studies (accessed
August 4, 2018).
55. 55. See the seventeen volumes published by the National Commission for the Protection of Human
Subjects of Biomedical and Behavioral Research between 1975 and 1978 (published by the US
Government Printing Office). The Commission studied various vulnerable populations and made
recommendations for additions to, or reform of, federal policies in the United States; and many of these
reports created or otherwise influenced public policy. The Commission’s work was critical in turning
attention to moral problems of using vulnerable populations in research. The Commission’s publications
and transcripts are all available at the Kennedy Institute of Ethics Library, Georgetown University,
Washington, DC. See
https://repository.library.georgetown.edu/bitstream/handle/10822/559326/A%20Guide%20to%20the%20
National%20Commission%20of%20the%20Protection%20of%20Human%20Subjects%20of%20Biomedi
cal%20and%20Behavioral%20Research ;sequence=5.
56. 56. For analysis of the concept of exploitation, see Alan Wertheimer, Exploitation (Princeton, NJ:
Princeton University Press, 1996); Matt Zwolinski and Alan Wertheimer, “Exploitation,” The Stanford
Encyclopedia of Philosophy (Summer 2017 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/sum2017/entries/exploitation/ (accessed July 24, 2018); and Jennifer S.
Hawkins and Ezekiel J. Emanuel, eds., Exploitation and Developing Countries: The Ethics of Clinical
Research (Princeton, NJ: Princeton University Press, 2008).
57. 57. See Carol Levine, Ruth R. Faden, Christine Grady, et al. (for the Consortium to Examine Clinical
Research Ethics), “The Limitations of ‘Vulnerability’ as a Protection for Human Research Participants,”
American Journal of Bioethics 4 (2004): 44–49; Samia A. Hurst, “Vulnerability in Research and Health
Care: Describing the Elephant in the Room?” Bioethics 22 (2008): 191–202; and Ruth Macklin,
“Bioethics, Vulnerability, and Protection,” Bioethics 17 (2003): 472–86.
58. 58. See Debra A. DeBruin, “Looking beyond the Limitations of ‘Vulnerability’: Reforming Safeguards in
Research,” American Journal of Bioethics 4 (2004): 76–78; and National Bioethics Advisory
Commission, Ethical and Policy Issues in Research Involving Human Participants, vol. 1 (Bethesda, MD:
Government Printing Office, 2001).
59. 59. See Sarah E. Hewlett, “Is Consent to Participate in Research Voluntary?” Arthritis Care and Research
9 (1996): 400–404; Robert M. Nelson, Tom L. Beauchamp, Victoria A. Miller, et al., “The Concept of
Voluntary Consent,” American Journal of Bioethics 11 (2011): 6–16; and Robert M. Nelson and Jon F.
https://www.researchgate.net/publication/280151725_Quantifying_the_Risks_of_Non-Oncology_Phase_I_Research_in_Healthy_Volunteers_Meta-Analysis_of_Phase_I_Studies
https://repository.library.georgetown.edu/bitstream/handle/10822/559326/A%20Guide%20to%20the%20National%20Commission%20of%20the%20Protection%20of%20Human%20Subjects%20of%20Biomedical%20and%20Behavioral%20Research ;sequence=5
https://plato.stanford.edu/archives/sum2017/entries/exploitation/
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Merz, “Voluntariness of Consent for Research: An Empirical and Conceptual Review,” Medical Care 40
(2002), Suppl. V69–80.
60. 60. See Beauchamp, Jennings, Kinney, and Levine, “Pharmaceutical Research Involving the Homeless,”
547–64; and Jennifer S. Hawkins and Ezekiel J. Emanuel, “Clarifying Confusions about Coercion,”
Hastings Center Report 35 (September–October 2005): 16–19.
61. 61. Common Rule for the Protection of Human Subjects, US Code of Federal Regulations, 45 CFR
46.116(a)(2) (implementation, January 21, 2019) https://www.ecfr.gov/cgi-bin/retrieveECFR?
gp=&SID=83cd09e1c0f5c6937cd9d7513160fc3f&pitd=20180719&n=pt45.1.46&r=PART&ty=HTML
(accessed May 21, 2019); and see also Ezekiel Emanuel, “Ending Concerns about Undue Inducement,”
Journal of Law, Medicine, & Ethics 32 (2004): 100–105, esp. 101.
62. 62. The justification of monetary inducement in terms of mutual benefit is defended by Martin Wilkinson
and Andrew Moore, “Inducement in Research,” Bioethics 11 (1997), 373–89; and Wilkinson and Moore,
“Inducements Revisited,” Bioethics 13 (1999): 114–30.
63. 63. See Neal Dickert and Christine Grady, “What’s the Price of a Research Subject? Approaches to
Payment for Research Participation,” New England Journal of Medicine 341 (1999): 198–203; Margaret
L. Russell, Donna G. Moralejo, and Ellen D. Burgess, “Paying Research Subjects: Participants’
Perspectives,” Journal of Medical Ethics 26 (2000): 126–30; and David Resnick, “Research Participation
and Financial Inducements,” American Journal of Bioethics 1 (2001): 54–56.
64. 64. See Abel Valenzuela, Jr., Nik Theodore, Edwin Meléndez, and Ana Luz Gonzalez, “On the Corner:
Day Labor in the United States” (UCLA Center for the Study of Urban Poverty, January 2006), available
at http://portlandvoz.org/wp-content/uploads/images/2009/04/national-study (accessed July 25, 2018).
65. 65. United States Census Bureau, “Health Insurance Coverage in the United States: 2016,” available at
https://www.census.gov/library/publications/2017/demo/p60-260.html (accessed July 25, 2018).
66. 66. See Daniels, Just Health Care, chaps. 3 and 4; and Just Health: Meeting Health Needs Fairly, pp. 46–
60. See further on the right to health care Allen Buchanan and Kristen Hessler, “Specifying the Content of
the Human Right to Health Care,” and Buchanan and Matthew DeCamp, “Responsibility for Global
Health,” both published in Allen Buchanan, Justice and Health Care: Selected Essays (New York: Oxford
University Press, 2009), as chaps. 9–10.
67. 67. Cf. Allen Buchanan, “The Right to a Decent Minimum of Health Care,” Philosophy & Public Affairs
13 (Winter 1984): 55–78; and Buchanan, “Health-Care Delivery and Resource Allocation,” in Medical
Ethics, 2nd ed., ed. Robert M. Veatch (Boston: Jones & Bartlett, 1997), esp. pp. 337–59. Both are
reprinted in Buchanan, Justice and Health Care, as chaps. 1–2. See also Julian Savulescu, “Justice and
Healthcare: The Right to a Decent Minimum, Not Equality of Opportunity,” American Journal of
Bioethics 1 (2001), published online December 2010, available at
https://www.tandfonline.com/doi/abs/10.1162/152651601300168988?journalCode=uajb20 (accessed
August 5, 2018).
68. 68. Compare Peter A. Ubel et al., “Cost-Effectiveness Analysis in a Setting of Budget Constraints—Is It
Equitable?” New England Journal of Medicine 334 (May 2, 1996): 1174–77; and Paul T. Menzel, “Justice,
Liberty, and the Choice of Health System Structure,” in Medicine and Social Justice, 2nd ed., ed.
Rosamond Rhodes, Margaret P. Battin, and Anita Silvers (New York: Oxford University Press, 2012), pp.
35–46.
69. 69. This discussion of Dworkin’s position is based on his Sovereign Virtue: The Theory and Practice of
Equality (Cambridge, MA: Harvard University Press, 2000), chap. 8.
70. 70. Robert M. Veatch, “Voluntary Risks to Health: The Ethical Issues,” JAMA: Journal of the American
Medical Association 243 (January 4, 1980): 50–55; and Justin Giovannelli, Kevin Lucia, and Sabrina
Corlette, “Insurance Premium Surcharges for Smokers May Jeopardize Access to Coverage,” To the Point
(A Commonwealth Fund Publication), January 2015, available at
https://www.commonwealthfund.org/blog/2015/insurance-premium-surcharges-smokers-may-jeopardize-
access-coverage.
71. 71. For an instructive debate about taxing unhealthy choices, see Alexander W. Cappelen and Ole Frithjof
Norheim, “Responsibility, Fairness and Rationing in Health Care,” Health Policy 76 (2006): 312–19; and,
in response, Andreas Albertsen, “Taxing Unhealthy Choices: The Complex Idea of Liberal Egalitarianism
in Health,” Health Policy 120, no. 5 (2016): 561–66. For another useful debate on personal responsibility
in health policy, see Phoebe Friesen, “Personal Responsibility within Health Policy: Unethical and
https://www.ecfr.gov/cgi-bin/retrieveECFR?gp=&SID=83cd09e1c0f5c6937cd9d7513160fc3f&pitd=20180719&n=pt45.1.46&r=PART&ty=HTML
http://portlandvoz.org/wp-content/uploads/images/2009/04/national-study
https://www.census.gov/library/publications/2017/demo/p60-260.html
https://www.tandfonline.com/doi/abs/10.1162/152651601300168988?journalCode=uajb20
https://www.commonwealthfund.org/blog/2015/insurance-premium-surcharges-smokers-may-jeopardize-access-coverage
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Ineffective,” Journal of Medical Ethics 44, no. 1 (2018): 53–58; and, in response, Julian Savulescu,
“Golden Opportunity, Reasonable Risk and Personal Responsibility for Health,” Journal of Medical
Ethics 44, no. 1 (2018): 59–61.
72. 72. For data about liver transplants, see the Organ Procurement and Transplantation Network, National
Data, available at https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/# (accessed
November 12, 2018). Many patients die from ESLF without seeking a transplant, being referred for
evaluation, or being admitted to the transplant waiting list.
73. 73. See, for example, R. Adam, V. Karam, and V. Delvart, “Evolution of Indications and Results of Liver
Transplantation in Europe: A Report from the European Liver Transplant Registry (ELTR),” Journal of
Hepatology 57 (2012): 675–88; and Claudio Augusto Marroni, Alfeu de Medeiros Fleck, Jr., Sabrina
Alves Fernandes, et al., “Liver Transplantation and Alcoholic Liver Disease: History, Controversies, and
Considerations,” World Journal of Gastroenterology 24, no. 26 (2018): 2785–805.
74. 74. Arguments opposed to the total exclusion of patients with alcohol-related liver disease from liver
transplantation, based on arguments from justice, appear in Carl Cohen, Martin Benjamin, and the Ethics
and Social Impact Committee of the [Michigan] Transplant and Health Policy Center, “Alcoholics and
Liver Transplantation,” JAMA: Journal of the American Medical Association 265 (March 13, 1991):
1299–301; and Alexander Zambrano, “Why Alcoholics Ought to Compete Equally for Liver Transplants,”
Bioethics 30, no. 9 (2016): 689–97.
75. 75. Alexandra Rockey Fleming, “When Drinkers Suffer Liver Disease, Should Getting a Transplant Be So
Hard?” Washington Post, January 29, 2017, available at https://www.washingtonpost.com/national/health-
science/when-drinking-ruins-someones-liver-should-they-qualify-for-a-transplant/2017/01/27/7ededff0-
d1c7-11e6-9cb0-54ab630851e8_story.html?utm_term=.3b5207cef8a2 (accessed November 8, 2018).
76. 76. See B. P. Lee, N. Mehta, L. Platt, et al., “Outcomes of Early Liver Transplantation for Patients with
Severe Alcoholic Hepatitis,” Gastroenterology 155, no. 2 (2018): 422–30; A. Marot, M. Dubois, E. Trépo,
et al., “Liver Transplantation for Alcoholic Hepatitis: A Systematic Review with Meta-analysis,” PLOS
One 13, no. 1 (2018): e0190823; Jessica L. Mellinger and Michael L. Volk, “Transplantation for Alcohol-
related Liver Disease: Is It Fair?” Alcohol and Alcoholism 53, no. 2 (2018): 173–77; and Eric F. Martin,
“Liver Transplantation for Alcoholic Liver Disease,” Gastroenterology & Hepatology 14, no. 9
(September 2018): 532–35.
77. 77. Alvin H. Moss and Mark Siegler, “Should Alcoholics Compete Equally for Liver Transplantation?”
JAMA: Journal of the American Medical Association 265 (March 13, 1991): 1295–98. See also Robert M.
Veatch and Lainie F. Ross, Transplantation Ethics, 2nd ed. (Washington, DC: Georgetown University
Press, 2015), chap. 18, “Voluntary Risks and Allocation: Does the Alcoholic Deserve a New Liver?”;
Walter Glannon, “Responsibility, Alcoholism, and Liver Transplantation,” Journal of Medicine and
Philosophy 23 (1998): 31–49; and James Neuberger, Karl-Heinz Schulz, Christopher Day, et al.,
“Transplantation for Alcoholic Liver Disease,” Journal of Hepatology 36 (2002): 130–37. Andreas
Albertsen shows how luck egalitarianism supports taking account of personal responsibility in allocating
scarce liver transplants; see his “Drinking in the Last Chance Saloon: Luck Egalitarianism, Alcohol
Consumption, and the Organ Transplant Waiting List,” Medicine, Health Care and Philosophy 19 (2016):
325–38.
In 2016, 24% of the liver transplants in the United States went to patients with alcohol liver disease, which
replaced hepatitis C virus infection as the leading condition for patients receiving liver transplant. See G.
Cholankeril and A. Ahmed, “Alcoholic Liver Disease Replaces Hepatitis C Virus Infection as the Leading
Indication for Liver Transplantation in the United States,” Clinical Gastroenterology and Hepatology 16,
no. 8 (2018): 1356–58. On trends over time, see also Catherine E. Kling, James D. Perkins, Robert L.
Carithers, et al., “Recent Trends in Liver Transplantation for Alcoholic Liver Disease in the United
States,” World Journal of Hepatology 9, no. 36 (December 28, 2017): 1315–21.
78. 78. Italics in the original. On this distinction and egalitarian justice, see John E. Roemer, Equality of
Opportunity (Cambridge, MA: Harvard University Press, 1998).
79. 79. Some recommend using personal responsibility in modest ways. For instance, V. Thornton proposes
using it as a tie-breaker in “Who Gets the Liver Transplant? The Use of Responsibility as the Tie
Breaker,” Journal of Medical Ethics 35, no. 12 (2009): 739–42. Robert Veatch concurs, proposing that we
https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#
https://www.washingtonpost.com/national/health-science/when-drinking-ruins-someones-liver-should-they-qualify-for-a-transplant/2017/01/27/7ededff0-d1c7-11e6-9cb0-54ab630851e8_story.html?utm_term=.3b5207cef8a2
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view personal responsibility as a “small factor” that warrants deducting “a point or two” from the patient’s
point total for a particular transplant. See Veatch and Ross, Transplantation Ethics, 2nd ed., pp. 306–20.
Veatch’s coauthor, Lainie Ross, rejects this view, calling instead for fair access without regard to how the
patients’ needs came about; see pp. 306–20. From our standpoint, it is fair to treat all patients on the liver
transplant waiting list equally by balancing medical needs and probability of successful outcomes, with
time on the waiting list providing a tie breaker. For an overview, see James F. Childress, “Putting Patients
First in Organ Allocation: An Ethical Analysis of the U.S. Debate,” Cambridge Quarterly of Healthcare
Ethics 10, no 4 (October 2001): 365–76.
80. 80. For a discussion of issues regarding fair treatment for noncompliant patients, see Nir Eyal, “Why Treat
Noncompliant Patients? Beyond the Decent Minimum Account,” Journal of Medicine and Philosophy 36
(2011): 572–88.
81. 81. See Peter A. Ubel, Jonathan Baron, and David A. Asch, “Social Acceptability, Personal Responsibility,
and Prognosis in Public Judgments about Transplant Allocation,” Bioethics 13, no. 1 (1999): 57–68, which
found that people’s stated unwillingness to provide scarce transplantable organs to patients who had
engaged in undesirable behaviors was explained by their view that those patients were “simply less worthy
of scarce transplantable organs,” rather than totally by personal responsibility for organ failure or worse
probable transplant outcomes. See also Ubel, “Transplantation in Alcoholics: Separating Prognosis and
Responsibility from Social Biases,” Liver Transplantation and Surgery 3, no. 3 (1997): 1–5; and Ubel,
Christopher Jepson, Jonathan Baron, et al., “Allocation of Transplantable Organs: Do People Want to
Punish Patients for Causing Their Illness?, Liver Transplantation 7, no. 7 (2001): 600–607. Another study
found less negative public attitudes toward early liver transplantation for patients with acute alcoholic
hepatitis and little potential impact on probable donation. G. Stroh, T. Roseli, F. Dong, and J. Forster,
“Early Liver Transplantation for Patients with Acute Alcoholic Hepatitis: Public Views and the Effects on
Organ Donation,” American Journal of Transplantation 15 (2015): 1598–604.
82. 82. On this distinction and its importance, see the well-honed controversy in the following two articles:
Thomas Nagel, “The Problem of Global Justice,” Philosophy & Public Affairs 33 (2005): 113–47; and
Joshua Cohen and Charles Sabel, “Extra Rempublicam Nulla Justitia?” Philosophy & Public Affairs 34
(2006): 147–75, esp. 148, 150ff on the nature of statist theories. See further Onora O’Neill, Justice across
Boundaries: Whose Obligations? (Cambridge: Cambridge University Press, 2016); Nicole Hassoun,
Globalization and Global Justice: Shrinking Distance, Expanding Obligations (Cambridge: Cambridge
University Press, 2012); and Gillian Brock, Global Justice: A Cosmopolitan Account (Oxford: Oxford
University Press, 2009).
83. 83. As Rawls notes in A Theory of Justice, chap. 3, § 22. See n. 3.
84. 84. Hume, A Treatise of Human Nature, ed. David Fate Norton and Mary Norton (Oxford: Clarendon
Press, 2007), 3.2.2; and Hume, An Enquiry concerning the Principles of Morals, ed. Tom L. Beauchamp
(Oxford: Clarendon Press, 2000), sect. 3. Public utility is a critical moral consideration in Hume’s account,
but overall his theory of justice is not an instance of utilitarian moral theory.
85. 85. United Nations, Office of the High Commissioner for Human Rights, Human Rights Council, “Special
Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and
Mental Health,” publication undated, but available at
https://www.ohchr.org/en/issues/health/pages/srrighthealthindex.aspx (accessed July 25, 2018).
86. 86. See Singer’s One World: The Ethics of Globalization (New Haven, CT: Yale University Press, 2002),
especially chap. 5. This book tries to show the narrowness of strictly nationalist views of justice, policy,
and world leadership. See also Peter Unger’s similarly directed, Living High and Letting Die: Our Illusion
of Innocence (New York: Oxford University Press, 1996).
87. 87. For an introduction to global justice theories and their general principles, see Gillian Brock, “Global
Justice,” The Stanford Encyclopedia of Philosophy (Spring 2017 Edition), ed. Edward N. Zalta, available
at https://plato.stanford.edu/archives/spr2017/entries/justice-global/ (accessed August 2, 2108). For
globalist accounts that directly pertain to bioethics, see Powers and Faden, Social Justice, esp. chaps. 1
and 4–7; and the contributors to Global Health and Global Health Ethics, ed. Solomon Benatar and
Gillian Brock (Cambridge: Cambridge University Press, 2011); Joseph Millum and Ezekiel J. Emanuel,
eds., Global Justice and Bioethics (New York: Oxford University Press, 2012); Thomas Pogge, “Human
Rights and Global Health: A Research Program,” Metaphilosophy 36 (2005): 182–209.
https://www.ohchr.org/en/issues/health/pages/srrighthealthindex.aspx
https://plato.stanford.edu/archives/spr2017/entries/justice-global/
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88. 88. See further Powers and Faden, Social Justice, especially pp. 69–71, and the deepening of this account
in their second book, Structural Injustice: Power, Advantage, and Human Rights.
89. 89. UNICEF (United Nations International Children’s Emergency Fund), UNICEF for Every Child, The
State of the World’s Children Reports, The State of the World’s Children 2016, available at
https://www.unicef.org/sowc/ (accessed August 4, 2018); Susan Lang, “Millions of Third World Children
Die Needlessly Each Year Due to Mild to Moderate Malnutrition,” Cornell Chronicle (2003), available at
http://news.cornell.edu/stories/2003/06/moderate-malnutrition-kills-millions-children-needlessly; and
Claire Conway, UCSF News Center, Poor Health: When Poverty Becomes Disease, University of
California San Francisco, January 6, 2016, available at https://www.ucsf.edu/news/2016/01/401251/poor-
health (accessed August 2, 2018).
90. 90. See James F. Childress, “Who Shall Live When Not All Can Live?” Soundings: An Interdisciplinary
Journal 53, no. 4 (Winter 1970): 339–55, reprinted in Soundings 96, no. 3 (2013): 237–53, published with
several responses.
91. 91. For the precipitating history and later developments in the United States, including ethical issues, see
C. R. Blagg, “The Early History of Dialysis for Chronic Renal Failure in the United States: A View from
Seattle,” American Journal of Kidney Disease 49 (2007): 482–96; and US Institute of Medicine (now
National Academy of Medicine), Committee for the Study of the Medicare End-Stage Renal Disease
Program, Kidney Failure and the Federal Government, ed. Richard A. Rettig and Norman G. Levinsky
(Washington, DC: National Academy Press, 1991).
92. 92. See Powers and Faden, Social Justice, chap. 6, “Setting Limits”; Norman Daniels, “Resource
Allocation and Priority Setting,” in Public Health Ethics: Cases Spanning the Globe, ed. Drue H. Barrett,
Leonard W. Ortmann, Angus Dawson, et al. (New York: Singer, 2016), chap. 3; Daniels, Just Health:
Meeting Health Needs Fairly, pp. 313–32; and Norman Daniels and James Sabin, Setting Limits Fairly:
Can We Learn to Share Medical Resources? (New York: Oxford University Press, 2002).
93. 93. Oregon Legislature, Senate Bill 27, Or. Rev. Stat. §§ 414.025-414.750 (March 31, 1989); and Oregon
Health Services Commission, Prioritization of Health Services: A Report to the Governor and the 73rd
Oregon Legislative Assembly (March 2005), available at https://www.oregon.gov/oha/HPA/CSI-
HERC/Documents/2005-Biennial-Report-to-Governor-and-Legislature (accessed July 25, 2018). See
also Lawrence Jacobs, Theodore Marmor, and Jonathan Oberlander, “The Oregon Health Plan and the
Political Paradox of Rationing: What Advocates and Critics Have Claimed and What Oregon Did,”
Journal of Health Politics, Policy and Law 24 (1999): 161–80; and Daniel M. Fox and Howard M.
Leichter, “Rationing Care in Oregon: The New Accountability,” Health Affairs (Summer 1991), available
at https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.10.2.7 (accessed July 25, 2018).
94. 94. Health Economics Research, Inc., for the Health Care Financing Administration, Evolution of the
Oregon Plan (Washington, DC: NTIS No. PB98–135916 INZ, December 12, 1997, as updated January 19,
1999); Oregon Department of Administrative Services, Assessment of the Oregon Health Plan Medicaid
Demonstration (Salem: Office for Oregon Health Plan Policy and Research, 1999); and see further Oregon
Health Authority, “Background on Oregon’s 1115 Medicaid Demonstration Waiver,” available at
https://www.oregon.gov/oha/HPA/HP-Medicaid-1115-Waiver/Pages/Background.aspx (accessed August
4, 2018).
95. 95. Jonathan Oberlander, “Health Reform Interrupted: The Unraveling of the Oregon Health Plan,” Health
Affairs 26 (January–February 2007): w96–105; Rachel Solotaroff et al., “Medicaid Programme Changes
and the Chronically Ill: Early Results from a Prospective Cohort Study of the Oregon Health Plan,”
Chronic Illness 1 (2005): 191–205; Matthew J. Carlson, Jennifer DeVoe, and Bill J. Wright, “Short-Term
Impacts of Coverage Loss in a Medicaid Population: Early Results from a Prospective Cohort Study of the
Oregon Health Plan,” Annals of Family Medicine 4 (2006): 391–98; and Oregon Health & Science
University, Center for Health Systems Effectiveness, Evaluation of Oregon’s 2012–2017 Medicaid Waiver
(December 29, 2017), available at
https://www.oregon.gov/oha/HPA/ANALYTICS/Evaluation%20docs/Summative%20Medicaid%20Waive
r%20Evaluation%20-%20Final%20Report (accessed July 26, 2018). See also Ronald Stock and Bruce
W. Goldberg, eds., Health Reform Policy to Practice: Oregon’s Path to a Sustainable Health System: A
Study in Innovation (London: Academic Press, 2017), esp. chap. 1, Mike Bonetto, “The Oregon Narrative:
History of Health Reform,” and chap. 19, Thomas Daschle and Piper Nieter Su, “Leading by Example:
Why Oregon Matters in the National Health Reform Discussion.”
https://www.unicef.org/sowc/
http://news.cornell.edu/stories/2003/06/moderate-malnutrition-kills-millions-children-needlessly
https://www.ucsf.edu/news/2016/01/401251/poor-health
https://www.oregon.gov/oha/HPA/CSI-HERC/Documents/2005-Biennial-Report-to-Governor-and-Legislature
https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.10.2.7
https://www.oregon.gov/oha/HPA/HP-Medicaid-1115-Waiver/Pages/Background.aspx
https://www.oregon.gov/oha/HPA/ANALYTICS/Evaluation%20docs/Summative%20Medicaid%20Waiver%20Evaluation%20-%20Final%20Report
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96. 96. This subsection is indebted to Powers and Faden, Social Justice, chap. 6.
97. 97. See Paul T. Menzel, Medical Costs, Moral Choices (New Haven, CT: Yale University Press, 1983),
chap. 7; Peter J. Pronovost and Ruth R. Faden, “Setting Priorities for Patient Safety,” JAMA: Journal of
the American Medical Association 302 (August 26, 2009): 890–91; Akc Bergmark, Marti G. Parker, and
Mats Thorslund, “Priorities in Care and Services for Elderly People: A Path without Guidelines?” Journal
of Medical Ethics 26 (2000): 312–18; and Jennifer L. Gibson, Douglas K. Martin, and Peter A. Singer,
“Setting Priorities in Health Care Organizations: Criteria, Processes, and Parameters of Success,” BMC
Health Services Research 4 (2004), available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC518972/
(accessed July 26, 2018).
98. 98. L. B. Russell et al., “The Role of Cost-Effectiveness Analysis in Health and Medicine,” JAMA:
Journal of the American Medical Association 276 (1996): 1172–77; Dan Brock, “Ethical Issues in the Use
of Cost-Effectiveness Analysis,” in Public Health, Ethics, and Equity, ed. Sudhir Anand, Fabienne Peter,
and Amartya Sen (Oxford: Oxford University Press, 2004), pp. 201–23.
99. 99. For a general introduction to moral problems of health care rationing, see Greg Bognar and Iwao
Hirose, The Ethics of Health Care Rationing: An Introduction (New York: Routledge/Taylor & Francis,
2014). For a defense of a broad use of rationing, see Peter A. Ubel, Pricing Life: Why It’s Time for Health
Care Rationing (Cambridge, MA: MIT Press, 2000).
100. 100. See Peter A. Ubel and Susan D. Goold, “‘Rationing’ Health Care: Not all Definitions Are Created
Equal,” Archives of Internal Medicine 158 (1998): 209–14; and Beatrix Hoffman, Health Care for Some:
Rights and Rationing in the United States since 1930 (Chicago: University of Chicago Press, 2012).
101. 101. Rowena Mason, “Charities Call for NHS to Stop Rationing Critical Care,” Guardian, February 18,
2017, available at https://www.theguardian.com/society/2017/feb/18/charities-stop-nhs-rationing-critical-
care (accessed July 26, 2018); John McKenzie et al., “Dialysis Decision Making in Canada, the United
Kingdom, and the United States,” American Journal of Kidney Diseases 31 (1998): 12–18; Adrian
Furnham and Abigail Ofstein, “Ethical Ideology and the Allocation of Scarce Medical Resources,” British
Journal of Medical Psychology 70 (1997): 51–63; and Denis Campbell and Pamela Duncan, “Patients
Suffering as Direct Result of NHS Wait-Time Failures,” Guardian (US Edition), February 8, 2018,
available at https://www.theguardian.com/society/2018/feb/08/patients-suffering-direct-result-nhs-wait-
time-failures (accessed July 25, 2018).
102. 102. See Peter P. Reese, Arthur L. Caplan, Roy D. Bloom, et al., “How Should We Use Age to Ration
Health Care? Lessons from the Case of Kidney Transplantation,” Journal of the American Geriatric
Society 58 (2010): 1980–86; B. E. Hippen, J. R. Thistlethwaite, Jr., and L. F. Ross, “Risk, Prognosis, and
Unintended Consequences in Kidney Allocation,” New England Journal of Medicine 364 (2011): 1285–
87; Leslie P. Scheunemann and Douglas B. White, “The Ethics and Reality of Rationing in Medicine,”
Chest 140 (2011): 1625–32; and M. R. Moosa and M. Kidd, “The Dangers of Rationing Dialysis
Treatment: The Dilemma Facing a Developing Country,” Kidney International 70 (September 2006):
1107–14.
103. 103. Daniels, Just Health: Meeting Health Needs Fairly, pp. 171–85, esp. 177–81; and Daniels, Am I My
Parents’ Keeper? (New York: Oxford University Press, 1988). For a communitarian approach to setting
limits on health care for the elderly, see Daniel Callahan, What Kind of Life, and Setting Limits.
104. 104. Alan Williams, “Intergenerational Equity: An Exploration of the ‘Fair Innings’ Argument,” Health
Economics 6 (1997): 117–32. See also John Harris, The Value of Life (London: Routledge, 1985), chap. 5;
and Anthony Farrant, “The Fair Innings Argument and Increasing Life Spans,” Journal of Medical Ethics
35 (2009): 53–56.
105. 105. For criticism, see Dan W. Brock, “Justice, Health Care, and the Elderly,” Philosophy & Public Affairs
18 (1989): 297–312; and Michael M. Rivlin, “Why the Fair Innings Argument Is Not Persuasive,” BMC
Medical Ethics 1 (2000), available at https://bmcmedethics.biomedcentral.com/articles/10.1186/1472-
6939-1-1 (accessed July 24, 2018).
106. 106. National Kidney Foundation, “Financing a Transplant,” Transplant Living,
http://www.transplantliving.org/beforethetransplant/finance/costs.aspx (accessed January 26, 2012); and
see also Nicholas G. Smedira, “Allocating Hearts,” Journal of Thoracic and Cardiovascular Surgery 131
(2006): 775–76.
107. 107. US Department of Health and Human Services, Report of Task Force on Organ Transplantation,
Organ Transplantation: Issues and Recommendations (Washington, DC: DHHS, 1986), pp. 105, 111.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC518972/
https://www.theguardian.com/society/2017/feb/18/charities-stop-nhs-rationing-critical-care
https://www.theguardian.com/society/2018/feb/08/patients-suffering-direct-result-nhs-wait-time-failures
https://bmcmedethics.biomedcentral.com/articles/10.1186/1472-6939-1-1
http://www.transplantliving.org/beforethetransplant/finance/costs.aspx
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108. 108. By contrast to these views, see Norman Daniels, “Comment: Ability to Pay and Access to
Transplantation,” Transplantation Proceedings 21 (June 1989): 3434; and also Frances M. Kamm, “The
Report of the U.S. Task Force on Organ Transplantation: Criticisms and Alternatives,” Mount Sinai
Journal of Medicine 56 (May 1989): 207–20.
109. 109. Andrew A. Herring, Steffie Woolhandler, and David U. Himmelstein, “Insurance Status of U.S.
Organ Donors and Transplant Recipients: The Uninsured Give, but Rarely Receive,” International
Journal of Health Services 38, no. 4 (2008): 641–52.
110. 110. Although the distinction between these two stages is analytically useful and practical in some
situations, such as organ transplantation, the two stages may collapse into one in a public health crisis or in
disaster medicine.
111. 111. Originally proposed by Nicholas Rescher, “The Allocation of Exotic Medical Lifesaving Therapy,”
Ethics 79 (1969): 173–86.
112. 112. United States Task Force on Organ Transplantation, Organ Transplantation: Issues and
Recommendations: Report of the Task Force on Organ Transplantation, Public Health Service, Health
Resources and Services Administration, Office of Organ Transplantation (Washington, DC: Department of
Health and Human Services, 1987). On the evolution of US organ transplant policies, see Jeffrey Prottas,
The Most Useful Gift: Altruism and the Public Policy of Organ Transplants (San Francisco: Jossey-Bass,
1994); and David L. Weimer, Medical Governance: Values, Expertise, and Interests in Organ
Transplantation (Washington, DC: Georgetown University Press, 2010).
113. 113. United States Task Force on Organ Transplantation, Organ Transplantation, p. 95. A long-time
policy in the US Organ Procurement and Transplantation Network (OPTN) authorized the OPTN’s Ad
Hoc International Relations Committee to review any transplant center in which more than 5% of its
deceased donor transplants went to recipients who were nonresident aliens. This percentage was not an
absolute limit but a trigger for review. In 2012 a new policy dropped this provision and called for review
of all residency and citizenship data and the preparation of an annual report to ensure accountability. For a
positive evaluation of the policy’s transparency and accountability, see A. K. Glazier, G. M. Danovitch,
and F. L. Delmonico, “Organ Transplantation for Nonresidents of the United States: A Policy for
Transparency,” American Journal of Transplantation 14 (2014): 1740–43. Many countries are concerned
about “transplant tourism.”
114. 114. See, for example, Govind Persad, Alan Wertheimer, and Ezekiel J. Emanuel, “Principles for
Allocation of Scarce Medical Interventions,” Lancet 373 (January 31, 2009): 423–31. These authors argue
for a “complete lives” allocation system, which gives priority to “younger people who have not yet lived a
complete life.” See also Douglas B. White et al., “Who Should Receive Life Support during a Public
Health Emergency? Using Ethical Principles to Improve Allocation Decisions,” Annals of Internal
Medicine 150 (January 20, 2009): 132–38, which proposes an allocation strategy that builds in and
balances several morally relevant considerations, including “saving the most lives, maximizing the
number of ‘life-years’ saved, and prioritizing patients who have had the least chance to live through life’s
stages.”
115. 115. Compare and contrast Robert M. Veatch, “The Ethics of Resource Allocation in Critical Care,”
Critical Care Clinics 2 (January 1986): 73–89; Richard Wenstone, “Resource Allocation in Critical Care,”
in Ethics in Anaesthesia and Intensive Care, ed. Heather Draper and Wendy E. Scott (Oxford:
Butterworth-Heinemann, 2003), pp. 145–62; Gerald R. Winslow, Triage and Justice: The Ethics of
Rationing Life-Saving Medical Resources (Berkeley: University of California Press, 1982); and John
Kilner, Who Lives? Who Dies? Ethical Criteria in Patient Selection (New Haven, CT: Yale University
Press, 1990).
116. 116. See Duff R. Waring, Medical Benefit and the Human Lottery (Dordrecht, Netherlands: Springer,
2004). For broader examinations of lotteries in decision making, with particular attention to justice, see
Barbara Goodwin, Justice by Lottery (Chicago: University of Chicago Press, 1992); and Peter Stone, The
Luck of the Draw: The Role of Lotteries in Decision Making (New York: Oxford University Press, 2011).
117. 117. See the comment by Evan DeRenzo in Diane Naughton, “Drug Lotteries Raise Questions: Some
Experts Say System of Distribution May Be Unfair,” Washington Post, Health Section, September 26,
1995, pp. 14–15; and Childress, “Who Shall Live When Not All Can Live?”
118. 118. In Seattle, members of a closely watched committee that selected patients for dialysis when it was in
limited supply felt intense pressure and stress, often accompanied by feelings of guilt. See John Broome,
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“Selecting People Randomly,” Ethics 95 (1984): 38–55, at 41; and Shana Alexander, “They Decide Who
Lives, Who Dies?” Life Magazine, November 9, 1962, pp. 102–25.
119. 119. Robert D. Truog, “Triage in the ICU,” Hastings Center Report 22 (May–June 1992): 13–17. See also
John D. Lantos and Joel Frader, “Extracorporeal Membrane Oxygenation and the Ethics of Clinical
Research in Pediatrics,” New England Journal of Medicine 323 (August 9, 1990): 409–13; and Jonathan
W. Byrnes, “A New Benchmark for Pediatric Extracorporeal Membrane Oxygenation Research,”
Pediatric Critical Care Medicine 18 (November 2017): 1072–73. For discussion of the development, early
use, and eventually declining use of ECMO in neonates, see John D. Lantos, Neonatal Bioethics: The
Moral Challenges of Medical Innovation (Baltimore, MD: Johns Hopkins University Press, 2006), pp. 52–
62.
120. 120. See Ramsey, The Patient as Person (New Haven, CT: Yale University Press, 1970), pp. 257–58. For
controversy about this example, see Robert Baker and Martin Strosberg, “Triage and Equality: An
Historical Reassessment of Utilitarian Analyses of Triage,” Kennedy Institute of Ethics Journal 2 (1992):
101–23.
121. 121. Winslow, Triage and Justice. But contrast Baker and Strosberg, “Triage and Equality: An Historical
Reassessment.” On triage, see further Robert A. Gatter and John C. Moskop, “From Futility to Triage,”
Journal of Medicine and Philosophy 20 (1995): 191–205; Michael D. Christian, Charles L. Sprung, Mary
A. King, et al., on behalf of the Task Force for Mass Critical Care, “Triage: Care of the Critically Ill and
Injured during Pandemics and Disasters: CHEST Consensus Statement,” Chest 146, no. 4, Supplement
(October 2014): e61S–e74S: and the report of a task force for the Society of Critical Care Medicine:
Joseph L. Nates (Chair), Mark Nunnally, Ruth Kleinpell, et al., “ICU Admission, Discharge, and Triage
Guidelines: A Framework to Enhance Clinical Operations, Development of Institutional Policies, and
Further Research,” Critical Care Medicine 44, no. 8 (August 2016): 1553–1602.
122. 122. See James F. Childress, “Triage in Response to a Bioterrorist Attack,” in In the Wake of Terror:
Medicine and Morality in a Time of Crisis, ed. Jonathan D. Moreno (Cambridge, MA: MIT Press, 2003),
pp. 77–93.
123. 123. See T. M. Bailey, C. Haines, R. J. Rosychuk et al., “Public Engagement on Ethical Principles in
Allocating Scarce Resources during an Influenza Pandemic,” Vaccine 29 (2011): 3111–17. For a pilot
effort using a deliberative democracy method to solicit community values for allocation during disasters,
see Elizabeth L. Daugherty Biddison, Howard Gwon, Monica Schoch-Spana, et al., “The Community
Speaks: Understanding Ethical Values in Allocation of Scarce Lifesaving Resources during Disasters,”
Annals of the American Thoracic Society 11, no. 5 (2014): 777–83; and Biddison, Gwon, Schoch-Spana,
et al., “Scarce Resource Allocation during Disasters: A Mixed-Method Community Engagement Study,”
Chest 153, no. 1 (January 2018): 187–95.
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8
Professional–Patient Relationships
The previous four chapters identify moral principles that underlie many judgments in biomedical ethics. This
chapter uses these principles as well as the virtues discussed in Chapter 2 to interpret and specify rules and
virtues of veracity, privacy, confidentiality, and fidelity, with particular attention to relationships in clinical
practice, research involving human subjects, and public health.1 The rules and virtues discussed in this chapter
provide additional content to the principles and virtues elsewhere examined.
VERACITY
Codes of medical ethics have traditionally ignored obligations and virtues of veracity. The Hippocratic oath does
not recommend veracity, nor does the Declaration of Geneva of the World Medical Association. The
introduction to the original 1847 Code of Medical Ethics of the American Medical Association (AMA) offers
flowery praise of veracity, as “a jewel of inestimable value in medical description and narrative,” but the code
does not mention an obligation or virtue of veracity and allows physicians virtually unlimited discretion about
what to divulge to patients. The AMA’s 1980 Principles of Medical Ethics recommends, without elaboration,
that physicians “deal honestly with patients and colleagues,” and the current version requires physicians to “be
honest in all professional interactions.”2
Despite the rather brief mention of obligations of veracity in the historical documents of medical ethics, the
virtues of honesty, truthfulness, and candor are among the often deservedly praised character traits of health
professionals and researchers. Nevertheless, as Annette Baier notes, honesty “is not just a hard virtue to exhibit
but also a hard one to design.”3 There are many conceptual disputes, and the ground and weight of norms and
virtues of veracity have also long been disputed. Henry Sidgwick’s nineteenth-century observation still holds: “It
does not seem clearly agreed whether Veracity is an absolute and independent obligation, or a special application
of some higher principle.”4 After Sidgwick, G. J. Warnock claimed that veracity is an independent principle and
virtue that ranks in importance with other general norms such as those in our framework of respect for
autonomy, beneficence, nonmaleficence, and justice.5 Our view is that rules expressing obligations of veracity
are specifications of one or more of these basic general principles and that various virtues of veracity are less
basic than respectfulness for the autonomy of individuals.
Obligations of Veracity
Veracity in health care refers both to timely, accurate, objective, and comprehensive transmission of information
and to the way the professional fosters the patient’s or subject’s understanding. Hence, veracity is intimately
connected to respect for autonomy. However, three primary arguments support obligations of veracity, and these
arguments call on more than respect for autonomy. The first argument is based on the wide-ranging respect owed
to persons in many contexts including informed-consent situations, contexts of negotiating political settlements,
giving interviews to a journalist, selling a product, and the like. The second argument connects to obligations of
fidelity, promise-keeping, and contract.6 When we communicate with others, we implicitly promise that we will
speak truthfully and that we will not deceive listeners. By entering into a relationship in health care or research,
the patient or subject effectively enters into a contract that includes a right to receive truthful information
regarding diagnosis, prognosis, procedures, and the like, just as the professional gains a right to truthful
disclosures from patients and subjects. The third argument is based on the role of trust in relationships between
health professionals and patients and subjects: Adherence to rules of veracity is essential to the development and
maintenance of trust in these relationships.7
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Like all other obligations discussed in this volume, veracity is prima facie binding, not an absolute obligation.
Careful management of medical information—including limited disclosure, staged disclosure, nondisclosure,
deception, and even lying—is occasionally justified when veracity conflicts with other obligations such as those
of medical beneficence. As contexts change, the moral weights of veracity and beneficence will be heavier or
lighter, and no rule is available to determine that one outweighs the other when we have to decide whether to
disclose or withhold information. Accordingly, it is difficult to determine the weight of various obligations of
veracity outside of specific contexts.
Nevertheless, two generalizations may be tendered: (1) Certain kinds of deception that do not involve lying are
usually less difficult to justify than lying, in part because they do not threaten as deeply the relationship of trust
in many contexts of health care; and (2) underdisclosure and nondisclosure of information are also less difficult
to justify than lying in various circumstances now to be examined.8
The Disclosure of Bad News to Patients
An example of these problems is intentional nondisclosure to patients of a diagnosis of cancer or a similarly
serious medical condition and a prognosis of imminent death. Different cultural traditions and philosophical
accounts offer different views of the circumstances under which nondisclosure or partial disclosure is justified.9
From our standpoint, the physician’s or nurse’s fundamental obligation throughout the process of disclosure is to
reassure the patient while engaging sympathetically with the patient’s feelings and being present as a caring,
knowledgeable professional. In certain contexts, some information can be delayed and spread over a period of
time, and some may justifiably never be mentioned. The physician or nurse will still have a weighty obligation
to attend to proper forms of disclosure. In the case of patients who might be devastated by additional bad news
beyond that already received, the primary concern of doctors and nurses should not necessarily be the disclosure
of all available relevant information.
However, poor judgments about what and to whom to disclose can result in the mishandling of complex
situations. In a striking case, Mr. X, a fifty-four-year-old male patient, consented to surgery for probable
malignancy in his thyroid gland. After the surgery, the physician informed him that the diagnosis had been
confirmed and that the tumor had been successfully removed but did not inform him of the likelihood of lung
metastases and death within a few months. The physician did inform Mr. X’s wife, son, and daughter-in-law
about this fuller diagnosis and about the prognosis for Mr. X. All parties agreed to conceal the diagnosis and
prognosis from Mr. X. The physician told Mr. X only that he needed “preventive” treatment, and Mr. X
consented to irradiation and chemotherapy. The physician did not inform Mr. X of the probable causes of his
subsequent shortness of breath and back pain. Unaware of his impending death, Mr. X died three months later.10
The physician and family alike made poor judgments about withholding information, but, as we will show
below, limited or staged disclosure is sometimes appropriate and virtuous.
Shifts in policies of disclosure. In recent decades, a dramatic shift has occurred in many countries in physicians’
stated policies of disclosure of the diagnosis of cancer to patients. In the United States, in 1961, 88% of
physicians surveyed indicated that they sought to avoid disclosing a diagnosis of cancer to patients, whereas by
1979, 98% of those surveyed reported a policy of disclosure to cancer patients.11 A notably similar, though later
(1993–98), pattern of rapid change occurred in Japan.12 In the 1979 US survey, physicians indicated that they
most frequently considered the following four factors in deciding what to disclose: age (56% of respondents), a
relative’s wishes regarding disclosure to the patient (51%), emotional stability (47%), and intelligence (44%).
Although veracity in the disclosure of bad news—and in disclosure throughout clinical practice—has continued
to increase, some oncologists remain reluctant to disclose bad news and choose to withhold certain types of
information.13 It is unfortunate that, as in the case of Mr. X (and as reported in the 1979 survey), familial
preferences sometimes unduly influence clinicians’ decisions about disclosure of diagnosis and prognosis to
patients. Some physicians take the view that the family can help the physician determine whether the patient is
autonomous and capable of receiving information about serious risk. Although well-intended and in some cases
acceptable, this approach runs the risk of begging a critical question: By what right does a physician initially
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disclose information to a family without the patient’s acceptance of this arrangement? Families provide
important care and support for many patients, but an autonomous patient has the right to veto familial
involvement. Lacking careful justification, it is unethical for a physician to first disclose information to a
patient’s family without the patient’s authorization. The best policy is to ask the patient both at the outset and as
the illness progresses about the extent to which he or she wants to involve others, if at all. This generalization
holds irrespective of the patient’s cultural background, which can serve as a convenient, but inappropriate,
excuse for bypassing the patient by turning to another party.
Arguments for noncommunication and limited or staged communication of bad news. In some medical
communities, the pendulum may have swung too far from nondisclosure to disclosure, thereby viewing
physician responsibility wholly in terms of patients’ rights to information and the wrongness of withholding or
delaying any sort of relevant information. We argue in this subsection both that patients do not have an absolute
right to be told the truth and that under some conditions, physicians should not provide, particularly all at once,
full information about their patient’s medical circumstances. Disclosure of pertinent information is essential as
part of the process of obtaining informed consent, but the legitimate and appropriate management of information
in medical care goes well beyond informed consent. We maintain that health care professionals have an
obligation to manage information responsibly, sometimes limiting information and staging disclosures over time.
Here virtues may guide professional conduct better than obligations or rights.
Especially dangerous is the model of a one-time delivery of all relevant information by contrast to a staged
delivery. A more precautious, and justifiable, approach balances all of the patient’s relevant welfare interests and
the patient’s informational interests and rights. This process of balancing will sometimes lead to the judgment
that the physician is morally justified in withholding or postponing (or both) certain types of information. Three
arguments support some degree of nondisclosure, limited disclosure, staged disclosure, and the like in health
care, especially when there is “bad news,” but in other cases as well.
The first argument rests on what Henry Sidgwick and others have called “benevolent deception.” Such deception
has long been a part of medical tradition and practice. Its defenders hold that disclosure, particularly of a
prognosis of death, can violate obligations of beneficence or nonmaleficence by causing the patient anxiety, by
destroying the patient’s hope, by retarding or erasing a therapeutic outcome, by leading the patient to consider
suicide, and the like. This line of argument—“What you don’t know can’t hurt and may help you”—is
consequence-based. One objection to this argument rests largely on the uncertainty and unreliability of
predicting consequences. A second objection rests on the moral wrongness of appealing to such consequences in
these circumstances. Both objections appear in Samuel Johnson’s overstatement that “I deny the lawfulness of
telling a lie to a sick man for fear of alarming him. You have no business with consequences; you are to tell the
truth. Besides, you are not sure what effects your telling him that he is in danger may have.”14
Staged disclosure and cautious language about prognosis can be justified in some circumstances, despite the risk
to trust between clinicians and patients. Professional norms generally support the frank and direct sharing of
information about diagnosis and about therapeutic options, but they also may function to discourage these same
qualities in sharing prognostic information.15 Professional norms of disclosure should incorporate the
therapeutic value of hope for patients, along with the virtues of compassion, gentleness, and sensitivity, which
are often morally more important than comprehensive disclosures.
Staged disclosure and cautious language are illustrated in the following case from rehabilitation medicine.16 For
close to a month, a physician in a stroke rehabilitation unit carefully managed information in his interactions
with a patient who had suffered a stroke and who asked during the first session how long it would take for his
arm to improve. From the beginning the doctor knew that the patient was unlikely to recover significant use of
his arm, and he offered caveats and uncertainty that did not fully match what he believed or felt. He stressed the
limitations of prognostication, the unpredictability of recovery, and the need to give the brain a chance to heal.
The patient received these answers well at the time, apparently preferring the physician’s “ambiguous statements
about the future to the alternative judgment of the permanent paralysis he fears.” This indefinite, but caring and
supportive, exchange continued, with the physician praising the patient’s progress in walking and performing
daily activities, despite residual weakness. After two weeks, the patient was enthusiastic about his progress and
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asked, “How about my arm?” The physician responded, “The arm may not recover as much as the leg.”
Although this statement confirmed his fears, the patient still focused on his overall progress. He had a strong
hope that the physician might be mistaken, since he had repeatedly stressed his inability to prognosticate in
accurate detail.
Commenting on this case later, the physician noted that having been trained in the era of “patient autonomy,” he
had once felt that he “should share all available information [he] could provide about prognosis as early as
possible,” trying to temper unfavorable news, for instance, about arm recovery, with positive predictions of
restored walking and independent living. However, he had found both that his patients hoped for a return to their
earlier lives and that bad news at any early stage tended to overwhelm good news or signs of hope. Thus, he
became convinced that most of his “patients were not ready for the cold hard facts the minute they arrived at the
rehabilitation hospital. They needed time to come to terms with the reality of their disabilities, while
simultaneously regaining lost function.” He therefore deemed staged disclosures appropriate to sustain patients’
hopes—an understandable strategy under the circumstances. In our judgment, this physician’s decision to use
staged disclosures was justified and appropriate.
The second argument is that even if professionals know all relevant information, many patients are not able to
understand and appreciate the scope and implications of the information provided. Communication can be
complex, especially if the patient has limited capacity to understand, and sometimes, as in the following case,
intentional verbal inaccuracy can be justified: Over the years, a ninety-year-old patient, who as a young man had
been decorated for courageous actions in battle, had become fearful that he would develop cancer, which he
understood to be a shameful, painful, and fatal disease that would spread inexorably. He was referred for an
ulcer on his lip; a biopsy established the diagnosis of squamous cell carcinoma, which would require only a short
course of radiotherapy to cure, without any need for surgery or admission to a hospital. The elderly patient, tears
in his eyes, asked, “It’s not cancer, is it?” The physician emphatically denied that it was cancer.17
The physician justified his action on several grounds. First, he pointed to the patient’s deep need for “effective
reassurance.” Second, he argued that it was “more truthful” to tell this patient that he did not have cancer than to
tell him that he did, because it would have been impossible to inform him that he had a curable cancer “without
leaving him with a false and untrue impression” given his enduring and unchangeable beliefs. Third, addressing
this patient and his concerns in his own language expressed respect rather than paternalistic arrogance. Implicit
in these justifications is the conviction that, because of his apparently unalterable false beliefs, this patient
lacked the capacity to adequately process the diagnosis of cancer, which, for him, entailed a prognosis of death.
The physician’s decision may have been warranted in light of this patient’s condition and the depth of his false
beliefs, as well as the availability of effective treatment.
A third argument is that some patients, particularly the very sick and the dying, do not want to know the truth
about their condition. Despite surveys in the United States that almost universally indicate that the majority of
patients want to know, some physicians maintain that patients frequently indicate by various signals, if not actual
words, that they do not want the truth. This judgment may be warranted in a limited range of cases, but claims
about what patients genuinely want are inherently dubious when they contradict the patients’ own reports, and
this third argument sets dangerous precedents for patently paternalistic actions that masquerade as respect for
autonomy.
Relying heavily on the family’s judgment that the patient would not want to receive “bad news” also sets
dangerous precedents. An Italian oncologist reports that she tries to tell her patients “the complete truth,” but
sometimes the patient’s family asks her not to use the word “cancer.”18 She then relies on nonverbal
communication to establish truthful therapeutic relationships with patients in line with what she views as a
traditionally accepted form of Italian medical beneficence. She tries to listen carefully and assess both the verbal
and nonverbal interactions, while respecting the patients’ specific needs for information.
Such practices are not without their dangers, but they need not fail to respect individual autonomy, particularly if
the patient authorizes the clinician’s independent disclosure to the family. The ways in which patients exercise
their autonomy will reflect their self-understandings, including sociocultural expectations and religious or other
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beliefs. A choice not to know can be as autonomous and as worthy of respect as a choice to know. Accordingly,
a physician needs a keen sensitivity to grasp a particular patient’s preferences and to respect that patient when
dispensing information according to those preferences.
Nevertheless, attending to a particular patient’s expressed desire for information about prognosis is often as
difficult as it is delicate, and it may be unclear in the course of decision making whether a moral mistake is being
made. In one case, a twenty-six-year-old mother of two young children, had an aggressive adenocarcinoma.
Following radiation therapy and two different chemotherapeutic regimens, she was fragile, but stable.19 She was
on oxygen continuously and took long-acting morphine (60 mg) three times a day. Yet, she was energetic and
life-affirming. She told the new hematology/oncology fellow that she had “a feeling” based on her increased hip
pain and enlarged nodules that “things aren’t going as well as people tell me they are” and hoped he had some
new “tricks” up his sleeve. She promptly consented to a new drug after he explained its administration, its
potential adverse effects, and the ways they would try to prevent those effects, as well as his “hope that we
would begin to see the long-sought-for response that might begin to heal her.”
On the way to the chemotherapy unit, she said that she had heard about a woman dying of leukemia who had
written several stories for her children so that they would remember her. She continued, “My girlfriend said I
should do the same thing for my kids, but I don’t think I’m that far gone, am I, Doctor Dan?” Her physician
reports his “stunned silence.” Unprepared for the question, he was unsure how to respond in the hall of a busy
clinic, hardly an ideal setting for breaking bad news. Faced with her radiant smile, he replied: “No, Lisa, I don’t
think you’re at that point. I’m hopeful that this new treatment will work and that you will be able to spend a lot
more time with your kids.” “That’s what I thought, Doctor Dan,” she responded. “Thanks. Now on to round
three.” Fourteen days later, she died, without having written her stories for her children. Years later, the
physician continued to hear the echo of his last words to her, wondering whether conveying a different message,
with its depressing news, would have allowed her to pen a few words or poems or to record thoughts or
messages that would provide her children a living memory of their dynamic, carefree mother.
Disclosure of medical errors. “Preventable adverse events are a leading cause of death” in US hospitals,
according to a report from the Institute of Medicine (now the National Academy of Medicine), which claimed in
2000 that “at least 44,000, and perhaps as many as 98,000, Americans die in hospitals each year as a result of
medical errors.”20 There are disputes about the classification of preventable adverse events in health care, their
numbers, their causes, and possible solutions. For instance, not all preventable adverse events—whether lethal or
nonlethal, in the hospital or in other settings—are the result of medical errors or mistakes.21 One moral
responsibility is to develop systems, including training programs, to reduce medical errors and other causes of
preventable adverse events. A motto in the patient safety movement holds that “errors are caused by bad
systems, not by bad people.”22 Nevertheless, it is important to remove professionals deficient in personal
character, knowledge, or skills who make or are likely to make medical errors.
Another moral responsibility is to disclose promptly with specificity harmful medical errors to patients and their
families. Adequate disclosure often does not occur and is rarely documented when it does.23 Evasive
formulations, including the use of passive voice, ambiguous language, and euphemisms, frequently mark
disclosures that are documented.24 In one national survey of physicians, across several specialties, more than
one-third of the respondents did not entirely agree with disclosing to patients all serious medical errors, and
almost one-fifth admitted that because of their fear of a lawsuit they sometimes failed to fully disclose mistakes
to patients.25 The disclosure of medical error is a subset of the provision of bad news, but it is more difficult to
make these disclosures because clinicians or institutions caused the harms and subsequently fear malpractice
suits. These fears are understandable, but nondisclosure is almost always morally indefensible. Available
evidence indicates that these fears are often overblown, and some evidence shows that disclosure may be the
best policy for reducing the likelihood of malpractice suits.26
Other reasons for nondisclosure or limited disclosure of medical errors include concerns about harming patients
and damaging patient and public trust, as well as facing staff opposition. In one case, a young boy’s parents took
him to a medical center for treatment of a respiratory problem. After being placed in the adult intensive care
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unit, he received ten times the normal dosage of muscle relaxant, and the respirator tube slipped and pumped
oxygen into his stomach for several minutes. He suffered cardiac arrest and permanent brain damage. His
parents accidentally overheard a conversation that mentioned the overdose. The physician involved had decided
not to inform the parents of the mistake because they “had enough on [their] minds already,” but, in all
likelihood, the parents justifiably felt that their tragedy was compounded by the self-protective nondisclosure
and duplicity of the physician, whom they had, until this point, apparently trusted.27
Ethical questions arise about not only whether to disclose but how to disclose, how much to disclose, when to
disclose, and so forth. The language of “disclosure” may inappropriately suggest a one-off provision of
information, but this interpretation neglects the importance of interactive conversation between patients and
clinicians. In Talking with Patients and Families about Medical Error, Robert Truog and colleagues
appropriately focus less on specific communication skills and more on the values and attitudes that should
underlie conversations between patients and clinicians regarding medical errors.28 They emphasize five core
relational values in the interactions of patients and clinicians about medical errors: transparency, respect,
accountability, continuity, and kindness. These values can be understood as virtues of physicians that should be
operative in conversations between clinicians and patients.
For Truog and colleagues, and for us, balancing obligations is also required. In the context of medical error, and
with a firm commitment to meeting patients’ and families’ needs while rebuilding trust, clinicians must
“recognize, weigh, and balance” competing ethical considerations such as transparency and kindness in
determining what to say about medical error. A sincere apology will often be obligatory, and in some institutions
an early offer of compensation is required as a matter of justice, not merely as an expression of compassion or
generosity.
A key question is whether all medical errors should be disclosed to patients. Most of the discussion in the
literature and in this section focuses on harmful medical errors. There is widespread agreement that all medical
errors or “near misses” should be reported through appropriate institutional and other mechanisms in order to
ensure accountability and improve medical care. However, less agreement exists about whether nonharmful
medical errors should be disclosed to patients. The boundaries of “harm,” which we analyzed in Chapter 5 (pp.
158–59) as a “setback to interests,”29 are not always clear. Some proponents of disclosure of apparently
nonharmful medical errors argue that “even errors that result in no physiological harm may still induce pain,
psychological harm, and anxiety for the patient.”30 The overall effects of such errors may not be known for
some time. Hence, these authors recommend “immediate disclosure of all medical errors” to the patient. They
argue that this disclosure should be timely, clear, and concise, with an explanation of potential outcomes, a
statement that the error is otherwise being appropriately reported to authorities, an apology, and an invitation for
the patient to ask questions. They further suggest that this policy can strengthen the patient-physician
relationship without a major risk from lawsuits. In our view, the ethical obligation to disclose harmful medical
errors is more firmly established than the ethical obligation to disclose all medical errors. Nevertheless,
clinicians should start from a presumption in favor of disclosing all medical errors and then exclude those that,
in their considered judgment, after close analysis, are not material to the patient’s well-being or decision
making.31
In conclusion, the wall of almost collusive silence that has commonly surrounded medical mistakes is an
unjustified and troublesome feature of medical cultures—as is its connection to what we below refer to as
fidelity to one’s professional colleagues.32 It is important to build what many now call a just culture in medicine.
Deception of Third-Party Payers
Vigorous efforts to contain the costs of health care have led some physicians to use and to attempt to justify
deception to secure third-party coverage. A physician in obstetrics and gynecology presented the following
example: A forty-year-old woman underwent a diagnostic laparoscopy for primary infertility. Because the
woman’s private insurance policy did not cover this procedure for this indication, the attending surgeon
instructed the resident not to write anything about infertility in the operative notes and instead to stress the two
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or three fine adhesions found in the pelvic area; if these pelvic adhesions were the indication for the procedure,
the patient’s insurance would then cover it. When the resident refused, the attending prepared the operative
note.33
Several studies have attempted to determine the extent to which physicians use, or would be willing to use,
deception on behalf of their patients. According to one study, close to 50% of the physicians surveyed admitted
that they had exaggerated the severity of their patients’ medical condition so that those patients would be
covered for the medical care the physicians believed they needed.34 In another survey, 54% of the physicians
surveyed acknowledged that they had deceived third-party payers in order to obtain coverage benefits for their
patients’ medical condition, and 39% indicated that they had exaggerated the severity of patients’ conditions,
altered patients’ diagnoses, or reported signs or symptoms that patients did not have, with the intent to help
patients obtain coverage for needed care.35 Several of these studies indicate that a significant percentage of
physicians lie or otherwise compromise truthfulness. For these physicians, fidelity to patients trumps veracity,
but their actions are also sometimes motivated by their self-interest in reimbursement.36
Other studies have used hypothetical vignettes to determine the extent to which physicians are willing to deceive
or allow deception of a third-party payer to secure approval for procedures for patients. In one study, over half of
the internists surveyed sanctioned the use of deception in cases in which the patients were at immediate risk and
needed coronary bypass surgery or arterial revascularization.37 A survey of physicians and the general public
found that “the public was more than twice as likely as physicians to sanction deception (26% versus 11%) and
half as likely to believe that physicians have adequate time to appeal coverage decisions (22% versus 59%).”38
Physicians often confront a tension between their roles as patient advocates and their roles within institutional
structures related to third-party payers. As before, we do not maintain that deception can never be justified in
such conflicts, but physicians should place a premium on seeking alternative, nondeceptive courses of action,
such as formal appeals, and should challenge unduly restrictive systems.39 The understandable temptations of
deception in these systems pose threats to physician integrity, to the moral climate in organizations, and to the
fair distribution of benefits and burdens in these systems. Fidelity to patients, including strong advocacy on their
behalf, is in itself virtuous, but it should not cross the boundary of the disclosure of truthful clinical information
to which an impartial reviewer is entitled.
To conclude, we have argued in this section on veracity that rules of truthfulness and disclosure are profoundly
important in health care. Our conclusion is not merely, as one philosopher puts it, “a strong moral presumption
against lying and deception when they cause harm.”40 This approach would reduce the moral significance of
lying and deception to prohibitions derived from the principle of nonmaleficence and would fail to address other
reasons for disclosure in health care, including respect for autonomy. Nevertheless, many clinical contexts call
for good judgment that balances all relevant ethical considerations, rather than inflexible rules about the
necessity of full disclosure. No a priori decision rule is available to prioritize instant and abrupt truth-telling over
staged disclosure, limited disclosure, or even nondisclosure in some contexts. This perspective follows our
framework of multiple prima facie principles and our discussion of justified paternalism in Chapter 6 (pp. 234–
39).
Physicians today are generally aware of how tangled and difficult lines of decision making and communication
can be in medical practice. They appreciate what law and morality require in the way of honest disclosures to
and understanding by patients, as well as the dangers of underdisclosure. They also know that there are many
ways to respect the autonomy of patients. What we should ask of physicians is an educated and caring sensitivity
to the patient’s informational and therapeutic needs and preferences while carefully managing the quantity and
quality of information disclosed and the pace of the disclosure. Attending to a particular patient’s needs and
desires for information is complicated, a fact that will endure in health care.
PRIVACY
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Concerns about privacy and confidentiality pervade much of medical practice, health care administration, public
health, and research. Privacy became a major concern more recently than confidentiality, which has a long
history in medical ethics, but we will first discuss privacy because confidentiality is arguably a way to protect
privacy in certain relationships.
Privacy in Law and Legal Theory
In the 1920s, the US Supreme Court employed an expansive “liberty” interest to protect family decision making
about child-rearing, education, and the like. It later adopted the term privacy and expanded the individual’s and
the family’s interests in family life, child-rearing, and other areas of personal choice. Griswold v. Connecticut
(1965), a contraception case, set a precedent that the right to privacy not only shields information from others
but also protects a sphere of individual and familial decision making and action from governmental interference.
The Court’s decision overturned state legislation that prohibited the use or dissemination of contraceptives. The
Court determined that the right to privacy protects liberty by exempting a zone of private life from public
invasion.41
It may seem odd and possibly inappropriate to construe a right that protects individual or familial interests as
one of privacy rather than liberty or autonomy, but the right to privacy in laws often encompasses rights of
limited physical and informational access as well as rights of decisional freedom. Reducing this right to a right
to be free to do something or a right to act autonomously can create confusion, for reasons we will now explore.
The Concept of Privacy
Some definitions of “privacy” focus on an agent’s control over access to himself or herself. These definitions
mistakenly confuse privacy, which is a state or condition of limited access, with an agent’s control over privacy
or a right to privacy, which authorizes or empowers the agent to restrict or grant access. In short, these
definitions focus on either rights or powers rather than privacy itself.42 A person can have privacy without
having a right or any other form of control over access by others. Privacy exists, for example, in long-term care
facilities that render patients inaccessible or in settings where others are indifferent to or uninterested in persons.
Control, whether through rights or some other mechanism, is neither necessary nor sufficient for privacy as a
state or condition.43
Anita Allen has discerningly identified four forms of privacy that involve limited access to the person:
informational privacy, which biomedical ethics often emphasizes; physical privacy, which focuses on persons
and their personal spaces (the latter of which is sometimes called locational privacy); decisional privacy, which
concerns personal choices; and proprietary privacy, which highlights property interests in the human person, for
example, in a person’s image or biological materials.44 We propose, in addition, a fifth form of privacy—
relational or associational privacy. It includes the family and similarly intimate relations, within which
individuals make decisions in conjunction with others. As these different forms of privacy suggest, definitions of
privacy are too narrow if they focus entirely on limited access to information about a person. Privacy, as limited
access, extends to bodily products and objects or materials intimately associated with the person, as well as to
the person’s intimate relationships with friends, lovers, spouses, physicians, and others.
In some contexts, it is desirable to provide a tighter, more specific account of “privacy,” especially when
developing policies about which forms of access to which aspects of persons will constitute losses and violations
of privacy. We are, however, reluctant to tinker in this way with the concept to make it more serviceable for
certain types of policy. Instead, we recommend that policymakers who construct privacy policies carefully
specify the conditions of access that will and will not count as a loss of privacy or as a violation of the right to
privacy. The policy should demarcate the zones that are considered private and not to be invaded and should
identify interests that legitimately may be balanced against privacy interests. Often the focus will be on
informational privacy, but the strategy we recommend applies to a broad range of privacy interests.
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The value we place on a condition of limited access or nonaccess helps explain how it comes to be categorized
as private.45 Concerns about a loss of privacy may depend not only on the kind and extent of access but also on
who has access, through which means, and to which aspect of the person. As Charles Fried notes, “We may not
mind that a person knows a general fact about us, and yet feel our privacy invaded if he knows the details. For
instance, a casual acquaintance may comfortably know that I am sick, but it would violate my privacy if he knew
the nature of the illness.”46
Justifications of the Right to Privacy
In a highly influential 1890 article “The Right to Privacy,” Samuel Warren and Louis Brandeis argued that a
legal right to privacy flows from fundamental rights to life, liberty, and property.47 They derived it largely from
“the right to enjoy life—the right to be let alone.” But this near-vacuous right needs more content to amount to a
right to privacy. In recent discussions, several justifications of the right to privacy have been proposed, three of
which deserve attention here.
One approach derives the right to privacy from a cluster of other rights. Judith Thomson argues that this cluster
of personal and property rights includes rights not to be looked at; not to be caused distress (e.g., by the
publication of certain information); not to be harmed, hurt, or tortured (in an effort to obtain certain information,
say); and so on.48 However, her argument relies on several allegedly foundational rights that themselves have an
uncertain status, such as the right not to be looked at. We are not convinced that all of these alleged rights are
rights, and some of these rights may have the right to privacy as their basis, rather than the converse.
A second justification emphasizes the instrumental value of privacy and the right to privacy: Consequentialist
approaches justify rules of privacy according to their instrumental value for such ends as personal development,
creating and maintaining intimate social relations, and expressing personal freedom.49 For example, privacy
may be a necessary condition for intimate relationships of love, friendship, and trust.50
Although we build and maintain various relationships by granting some persons and denying others certain kinds
of access to ourselves, we question whether the instrumental value of privacy is the primary justification of
rights to privacy. The primary justification seems to be closer to the domain of the principle of respect for
autonomy, which underlies a third justification.51 We owe respect in the sense of deference to persons’
autonomous wishes not to be observed, touched, intruded on, and the like. The right to authorize or decline
access is the basic right. On this basis, the justification of the right to privacy parallels the justification of the
right to give an informed consent that we developed in Chapter 4 (pp. 118–23).
Joel Feinberg has observed that, historically, the language of autonomy has functioned as a political metaphor
for a domain or territory in which a state is sovereign. Personal autonomy carries over the idea of a region of
sovereignty for the self and a right to protect it by restricting access.52 Other common metaphors expressing
privacy in the personal domain include zones and spheres of privacy that protect autonomy.
Specifying and Balancing Rules of Privacy for Public Health Surveillance
We now consider how to specify rules and rights of privacy while allowing for justified intrusions on privacy
that balance privacy interests against other interests such as the public good and the progress of medical science.
We use surveillance for public health purposes as a prime example.53
Our goal is to find the conditions under which access to a person, and to information about a person, is
warranted. Surveillance generates data that can be used for epidemiological purposes to map the incidence and
prevalence of disease and for taking effective actions to protect and promote public health—for instance, to
impose quarantine after exposure to communicable diseases or to notify partners that a person has a sexually
transmitted disease. Epidemiological data may be anonymous, but effective actions often need personal
identifiers, typically names. We will concentrate on personally identified information.
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Common metaphors suggest surveillance’s risk to privacy: Surveillance serves as “the eyes of public health,”
even the “searching or prying eyes of public health,” or serves as a way to keep a “finger on the pulse of the
health of a community.” Each metaphor implies access to individuals and to information about them, and each
indicates that surveillance entails some loss of privacy. Public health surveillance sometimes infringes on the
right to privacy. Rarely do individuals consent to the collection, analysis, use, storage, and transfer of personal
information for public health purposes. Hence, for the most part, identifier-based surveillance in public health
without individual consent differs sharply from the collection of information in clinical care and in research.54
In many cases the public health rationale—based on beneficence and justice in the prevention of harm to others
—provides a sufficient justification for surveillance without consent. However, public health is not a single or
monolithic goal, and specificity is required to determine whether, on balance, a particular public health goal will
warrant the infringement of privacy rights, as is often the case for communicable diseases such as tuberculosis
and sexually transmitted diseases.55 The justification for public health surveillance hinges on the proposed use
of the data—the data by themselves will not have an impact on public health—and how effective that use is
likely to be. Depending on the disease being targeted, uses of the information could include partner notification,
quarantine, and isolation, or case management such as directly observed therapy for tuberculosis.
New York City’s program to address uncontrolled or poorly controlled diabetes raises major questions about
surveillance, in part because it targets a chronic disease rather than a communicable disease. Diabetes is a major
health problem, and it is the fourth leading cause of death in New York City, where approximately 9% of the
population is affected, for a total of about half a million persons with diabetes. Public health officials call
diabetes an “epidemic,” a technically correct term but one that also has the rhetorical advantage of evoking an
image that can support the expansion of public health authority and actions. Inadequately controlled diabetes
causes serious health problems, such as kidney disease, heart disease, and stroke. Beyond its tremendous health
burdens for patients, it has social and economic impacts, including heavy costs to the general public.
The Department of Health and Mental Hygiene in New York City initiated a program in 2006 to require
laboratories with electronic reporting capabilities to report to the department the blood sugar levels of persons
with diabetes in order to determine how well their diabetes is being controlled. Interventions later added to the
program include regularly notifying facilities and treating providers of their patients’ blood sugar levels and
sending letters to patients if they are overdue for a test or if their test results indicate that their blood sugar levels
are too high.56
New York City public health officials hoped to develop a parallel program for HIV infection but were stymied
by laws protecting privacy and confidentiality. The rationale for the program arguably became stronger as
evidence accumulated that anti-retroviral therapy increases the survival and improves the quality of life of
infected individuals, and also significantly reduces their risk of transmitting HIV infection to others by lowering
their viral load. Here therapy serves also as prevention. Surveillance data about cell counts and viral loads could
provide valuable information for both clinicians and patients and could have important public health effects.57
Significant ethical and policy obstacles for both the diabetes surveillance program and the proposed HIV
surveillance program arise from unconsented-to infringements of the right to privacy, but even in the absence of
appropriate consents, the right to privacy is not absolute and must be balanced against other ethical principles
and rules. As we discussed in Chapter 1 (pp. 22–24), where we proposed a model of constrained balancing,
relevant factors include the importance of the goal being sought (public health or population health, along with
the avoidance or reduction of social and economic burdens); whether the surveillance program would probably
realize the goal; whether the infringement of privacy rights is necessary, proportionate, and the least intrusive
means consistent with realizing the goal; whether adequate security measures are in place to protect personal
information (which would minimize the negative effects of overriding the right to privacy); and so forth.
Cautionary notes about the diabetes program are that it does not identify persons with undiagnosed diabetes or
prediabetes and that it is solely informational because it involves report and notification without additional
resources for prevention and treatment services.
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Proponents of privacy rights emphasize that rules protecting privacy, at least within limits, can facilitate the
cooperation needed for public health programs. In this regard, there are good reasons for vigorous public
engagement, with all relevant stakeholders—both professionals and members of the public—involved in the
development of surveillance policies. However, apprehension is still justified that public health programs such as
the diabetes program, with increased scrutiny of both patients and health care providers, may wind up alienating
the communities and health professionals involved, reducing their motivation to seek or provide health care
services.58 Another concern is that the New York City diabetes program represents so-called mission creep in
public health and, more dramatically, may open the way for additional and more extensive registries of sensitive
data, without adequate justification, thereby compromising rights of privacy.
CONFIDENTIALITY
We surrender some privacy when we grant others access to our personal information or our bodies, but we
usually retain a significant level of control over information generated about us in diagnostic and therapeutic
contexts and in research. For example, physicians are obligated not to grant an insurance company or a
prospective employer access to information about patients unless the patients authorize its release. When others
gain access to protected information without authorization, they infringe the right to confidentiality, the right to
privacy, or both.
Confidentiality could be considered a branch or subset of informational privacy. It prevents redisclosure of
information originally disclosed or generated within a confidential relationship, that is, a relationship in which
the confider has a reasonable and legitimate expectation that the confidant will not further disclose the
information to anyone without the confider’s authorization.59 The basic difference between the right to privacy
and the right to confidentiality is that an infringement of a person’s right to confidentiality occurs only if the
person or institution to whom the information was disclosed in confidence fails to protect the information or
deliberately discloses it to someone without first-party consent. By contrast, a person who, without
authorization, obtains a hospital record or gains access to a computer database violates rights of privacy but does
not violate rights of confidentiality. Only the person or institution that obtains information in a confidential
relationship can be charged with violating rights of confidentiality.
Traditional Rules and Evolving Practices
Rules of confidentiality appear as early as the Hippocratic Oath and continue today in national and international
codes. They are arguably the most widespread rules in medical ethics across time and cultures. Nevertheless,
strong rules of medical secrecy have been challenged, particularly in light of public health concerns.60 Some
commentators depict traditional confidentiality rules as little more than a convenient fiction, publicly
acknowledged by health care professionals and their professional organizations but widely ignored and violated
in practice. We agree that the rules are today largely ceremonial unless an underlying medical culture deeply
values the protection of personal health information.
Mark Siegler argues, in an influential article, that confidentiality in medicine is a decrepit concept, because what
both physicians and patients have traditionally understood as medical confidentiality no longer exists. It is
“compromised systematically in the course of routine medical care.” To make his point graphic, Siegler presents
the case of a patient who became concerned about the number of people in the hospital with apparent access to
his record and threatened to leave prematurely unless the hospital would guarantee confidentiality. Upon inquiry,
Siegler discovered that many more people than he suspected had responsibilities to examine the patient’s chart.
When he informed the patient of the number—approximately seventy-five—he assured the patient that “these
people were all involved in providing or supporting his health care services.” The patient retorted, “I always
believed that medical confidentiality was part of doctors’ code of ethics. Perhaps you should tell me just what
you people mean by ‘confidentiality.’”61
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This reaction is understandable and raises questions about the seriousness of many putative institutional and
professional protections. When William Behringer tested positive for HIV at a medical center in Princeton, New
Jersey, where he worked as an otolaryngologist and plastic surgeon, he received numerous phone calls of
sympathy within just a few hours from members of the medical staff. Within a few days, he received similar
calls from his patients, and, shortly thereafter, his surgical privileges at the medical center were suspended and
his practice ruined. Despite his expectation of and request for confidentiality, the medical center took no
significant precautions to protect his medical records.62
According to one survey of patients, medical students, and house staff about expectations and practices of
confidentiality, “patients expect a more rigorous standard of confidentiality than actually exists.” Virtually all
patients (96%) recognized the common practice of informally discussing patients’ cases for second opinions.
Most (69%) expected cases to be discussed openly in professional settings to receive other opinions. A majority
(51%) expected cases to be discussed in professional settings simply because they were medically interesting,
and half of the patients expected cases to be discussed with office nursing staff. However, they did not expect
cases to be discussed in other contexts, such as in medical journals, at parties, or with spouses or friends. By
contrast, house staff and medical students reported that cases are frequently discussed with physicians’ spouses
(57%) and at parties (70%).63
Threats to confidentiality emerge in many institutions with a capacity to store and disseminate confidential
medical information such as medical records, drugs prescribed, medical tests administered, and reimbursement
records. In occupational medicine, computer records in corporations are growing rapidly, and data in these
records can be searched. If the company routinely offers medical examinations by a corporate physician, records
can be computerized and merged with claims filed by an employee’s private physician for reimbursement under
corporate insurance policies. Many employees are concerned that this extensive, two-track medical history will
be used against them if a question of continued employment arises.
It may be possible to alter current health care practices to approximate more closely the traditional ideal of
confidentiality, but a gap will remain and probably will expand in many institutions because of the need for
efficient access to information in medicine. In this respect, confidentiality is indeed a decrepit practice in many
settings and improving the security of information through technological measures may not adequately protect
all of the interests traditionally protected by rules of confidentiality. In light of some patients’ weakly informed
but expansive expectations, health care professionals should communicate clearly and accurately with patients
about reasonable expectations for confidentiality, as well as privacy, in different health care contexts.64
The Nature of Medical Confidentiality
Confidentiality is present when one person discloses information to another, whether through words or other
means, and the person to whom the information is disclosed pledges, implicitly or explicitly, not to divulge that
information to a third party without the confider’s permission. Confidential information is private and
voluntarily imparted in confidence and trust. If a patient or research subject authorizes release of the information
to others, then no violation of rights of confidentiality occurs, although a loss of confidentiality and privacy
occurs. In an institution in which several professionals are appropriately involved in caring for the patient,
sharing the patient’s information could be warranted not only by medical beneficence but also by the patient’s
implied consent in accepting care at that institution.65
There exist acknowledged and justifiable exceptions or limits to the kind of information that can be considered
confidential in policy and practice. For example, legal rules may set limits to confidentiality, as when they
require practitioners to report gunshot wounds and venereal diseases to public health and other officials. Some
unwanted disclosures of apparently confidential information to third parties may not breach confidentiality
because of the context in which the information was originally gathered. For example, IBM physician Martha
Nugent informed her employer of her belief that an employee, Robert Bratt, had a problem of paranoia that
affected his behavior on the job.66 Bratt knew that Nugent had been retained by IBM to examine him but
expected conventional medical confidentiality. The company held that the facts disclosed by Nugent were
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necessary for evaluating Bratt’s request for a job transfer and, under law, were a legitimate business
communication. In our view, it is a reasonable conclusion that such information is not confidential by the
standards of medical confidentiality relevant to this kind of case and that Nugent was not bound by obligations
of confidentiality in the same way a private physician would have been. However, as a moral—by contrast to a
legal—matter, Nugent arguably should have disclosed to Bratt that conventional standards of medical
confidentiality did not apply in their relationship because of her contractual obligations to IBM.
Contracts calling for limited disclosures are legitimate as long as employees are aware of, or should be aware of,
provisions in the contract. A similar point applies to military physicians who have a dual responsibility to the
soldier as patient and to the military. Nevertheless, the company and the military, along with the physicians in
each context, have a moral responsibility to ensure that employees and soldiers understand, at the outset, the
conditions under which rules of confidentiality and protections of privacy do and do not apply. This moral
responsibility also extends to incarcerated persons who face complicated institutional rules and forms of
infringement of confidentiality in prisons.67 More broadly, patients and research subjects in any setting should
be informed about the operative rules of confidentiality, including exceptions to those rules. This standard is
particularly important in view of the public’s widespread, but often incorrect, assumptions about confidential
relations with health care professionals.
The Justification of Obligations of Confidentiality
Many of the goods of medicine and research could be realized without rules of confidentiality. On what basis,
then, can we justify a system of extensive, often expensive and inefficient, protections of confidentiality? Two
types of argument justify rules to protect confidentiality: (1) consequence-based arguments and (2) arguments
from autonomy and privacy rights. These arguments also help us determine legitimate exceptions to rules of
confidentiality.
Consequence-based arguments. Patients would be reluctant to disclose full and forthright information or
authorize a complete examination and a full battery of tests if they could not trust physicians to conceal some
information from third parties. Without such information, physicians would not be able to make accurate
diagnoses and prognoses or recommend the best course of treatment.
In the precedential Tarasoff case, a patient told his therapist that he wanted to kill a young woman who had
spurned his attention. The therapist alerted the university police but did not warn the intended victim. After the
patient killed the young woman, the family brought a suit alleging that the therapist should have warned the
intended victim. In this case, the California Supreme Court examined the basis and limits of confidentiality.68
Both the majority opinion, which affirmed that therapists have an obligation to warn third parties of their
patients’ threatened violence, and the dissenting opinion, which denied such an obligation, used consequentialist
arguments. Their debate hinged on different predictions and assessments of the consequences of a rule that
requires therapists to breach confidentiality by warning intended victims of a client’s threatened violence by
contrast to a rule that allows therapists to breach confidentiality when a member of the public is endangered.
The majority opinion pointed to the victims who would be saved, such as the young woman who had been killed
in this case, and contended that a professional’s obligation to disclose information to third parties could be
justified by the need to protect such potential victims. By contrast, the minority opinion contended that if it were
common practice in such cases to override obligations of confidentiality, the fiduciary relation between the
patient and the doctor would soon erode and collapse. Patients would lose confidence in psychotherapists and
would refrain from disclosing information crucial to effective therapy. As a result, violent assaults would
increase because dangerous persons would refuse to seek psychotherapeutic or psychiatric aid or to disclose
relevant information, such as their violent fantasies. These claims about rules of confidentiality hinge
significantly on empirical claims about which rule more effectively protects the interests of other persons along
with the interests of patients.
In cases of other legally accepted and mandated exceptions to confidentiality—such as requirements to report
contagious diseases, child abuse, and gunshot wounds—no substantial evidence exists that these requirements
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have either reduced prospective patients’ willingness to seek treatment and to cooperate with physicians or
significantly impaired the physician-patient relationship.69 However, one study did find that state laws that
impose an enforceable legal duty to warn intended victims of a patient’s threatened violence increase the rate of
homicides by 5%.70
In a consequence-oriented framework, nonabsolute rules of confidentiality are attractive and acceptable as long
as it is understood that when physicians or other health professionals breach confidentiality, they infringe their
patients’ rights. Such an infringement will almost always have negative effects for confiders. A physician who
breaks confidence cannot ignore the potential for eroding the system of medical confidentiality, trust, and
fidelity. In short, an acceptable consequentialist justification for breaching confidentiality must take into account
all probable consequences, and policymakers must balance the probable benefits and risks of different rules of
confidentiality in light of the best available evidence.
Arguments from autonomy and privacy rights. A second set of arguments to justify rules and rights of
confidentiality derives from both the principle of respect for autonomy and rules of privacy. The claim is that
rights of both autonomous choice and privacy jointly justify rights of confidentiality. Like the first argument, this
second argument does not support absolute rules or absolute rights of confidentiality. When rules and rights of
confidentiality are used as absolute shields, they can eventuate in outrageous and preventable injuries and
harms.71 (We have treated the claim that there are no absolute principles, rules, or rights in several previous
chapters.)
Justified Infringements of Rules of Confidentiality
Infringements of prima facie rules and rights of confidentiality can be justified in some circumstances in which
third parties face serious harms. We here concentrate on these situations, while noting that paternalistic breaches
of confidentiality to remove or prevent harms to the patient are also sometimes ethically justifiable. (See further
our discussion of paternalism in Chapter 6, pp. 237–39.)
Debates about when, if ever, breaches of doctor-patient confidentiality can be justified to protect the public
interest intensified in bioethics and beyond after March 25, 2015, when a Germanwings co-pilot, Andreas
Lubitz, appeared to intentionally crash an Airbus 320 in the French Alps, killing all 150 passengers and crew. An
investigation determined that the crash was deliberately caused—indeed premeditated—by the co-pilot, who
suffered from serious, long-term mental health problems, including severe depression and suicidal ideation. In
addition to out-patient treatment, he underwent a short-term hospitalization for these problems, and his doctors
deemed him mentally unfit to fly.72 However, his doctors were also subject to article 9 governing doctor-patient
confidentiality in the German Medical Association’s professional code: “Physicians are obliged to maintain
confidentiality regarding everything confided in them, or becoming known to them, in their capacity as a
physician, including after the death of the patient.”73 This code recognizes valid exceptions to this rule only
when patients release physicians from the obligation to maintain confidentiality or “insofar as disclosure is
necessary in order to safeguard a higher-ranking legally protected interest.” In the Airbus 320 case the doctors
did not disclose the information to third parties who were positioned to stop their patient from flying a
commercial aircraft.
Assessing and reducing risks to others. In assessing which risks to third parties outweigh rules or rights of
confidentiality, the probability that a harm will materialize and the magnitude of that harm must be balanced
against the moral weight of norms of confidentiality and the possible harms that might occur by breaching those
norms. The chart of risk assessment introduced on p. 245 supplies the basic categories:
Magnitude of Harm
Major Minor
High 1 2
Probability of
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Harm
Low 3 4
As a health professional’s reasoned assessment of a situation approaches a high probability of a major harm
(category 1) to a third party, the weight of the obligation to breach confidentiality increases. As the situation
approaches category 4, breaching confidentiality will likely not be justified. Many particularities of the case will
determine whether the professional is justified in breaching confidentiality in categories 2 and 3. These
particularities include the foreseeability of a harm’s occurrence, the preventability of that harm through a health
professional’s intervention, the harm that will be caused to the patient, and the potential impact of disclosure on
laws and policies regarding confidentiality. However, these abstract conditions are difficult to operationalize, and
measurements of probability and magnitude of harm are often not precise.
As a result of these difficulties, efforts have been made to limit the scope of an obligation that requires a breach
of confidentiality. Often substituted is a permissive approach that allows the clinician to breach confidentiality
under some circumstances but does not obligate him or her to do so. However, a permissive approach still faces
issues about foreseeability and prediction of harms. Enacting statutes to require physicians, psychotherapists,
and others to protect third parties from a patient’s or client’s possible violence, have often limited a Tarasoff-like
protective duty, including the duty to warn, to patient-identified or reasonably identifiable third parties.
However, the supreme court in the state of Washington has broadened the protective duty beyond specific threats
by including more indefinite, ill-defined, and vague threats.74
Notification of partners of HIV-positive persons. We will now consider how to specify and balance protections
of confidentiality with the protection of third parties in deliberations about whether to disclose a patient’s HIV
status or genetic information to third parties who might use the information to avoid or mitigate harm.
Physicians and medical institutions must report cases of HIV-infection to public health departments in most legal
jurisdictions in the United States. Notably controversial since the beginning of the HIV/AIDS epidemic in the
early 1980s is whether physicians and other health care professionals may or should notify at-risk persons that a
patient has tested positive for HIV infection and therefore has the potential to infect others. In one case, after
several weeks of dry, persistent coughing and night sweats, a bisexual man visited his family physician, who
arranged for a test to determine whether he had antibodies to HIV. The physician informed the patient of a
positive test, of the risk of infection for his wife, and of the risk that their children might lose both parents. The
patient refused to tell his wife and insisted that the physician maintain strict confidentiality. The physician
reluctantly agreed. Only in the last few weeks of his life did the patient allow the physician to inform his wife of
the nature of her husband’s illness, and a test then showed that she too was antibody-positive for HIV. When
symptoms appeared a year later, she angrily—but appropriately—accused the physician of violating his moral
responsibilities to her and to her children.75 In this case there was a high probability, under conditions of
unprotected sexual intercourse, of a major harm to an identified individual, which is the paradigm case of
conditions that justify a breach of confidentiality.
Many well-grounded reasons support notifying spouses and sexual partners—in some cases—that a person has
tested positive for HIV. For example, if people are at risk of serious harms, and the disclosure is necessary to
prevent and probably would prevent the harms (to their spouses or lovers), then disclosure that breaks
confidentiality is warranted. Variations on these conditions appear in several statements of professional ethics by
medical associations, but ambiguities and gaps in their statements indicate some difficulties in precisely
specifying the nature, scope, and strength of a clinician’s moral obligations to protect third parties. Guidelines
often do not oblige the physician to determine whether the patient has, in fact, carried out a promise to terminate
risky conduct or to warn those endangered, and it is not clear how far the physician or other health care
providers should go in monitoring compliance, particularly without the patient’s consent.
According to one study, leaving partner notification to patients, sometimes called “passive notification” or
“passive referral,” is ineffective.76 However, other studies have found it to be beneficial in getting partners
tested and identifying HIV-positive partners, though less effective in linking them with treatment.77 The
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generally preferred and recommended approach, based on several studies, is “assisted partner notification,” in
which the health care provider assists the patient/client in a disclosure to or anonymous notification of the
partner(s) or, with the patient’s consent, contacts the partner(s) directly. In one version of “assisted partner
notification,” called “contract referral,” the HIV-positive person establishes a contract with a health care
provider to inform his or her sexual or drug-injecting partners directly or anonymously of their probable
exposure to HIV. If the partner or partners fail to contact the health care provider within a predetermined period,
the health care provider has the right and obligation to make the contact.78
Rules of partner notification, whether undertaken by public health officials or other health professionals,
changed from their earlier versions in part because (1) HIV/AIDS is now considered a chronic disease rather
than a death sentence, (2) there are powerful and effective anti-retroviral therapies that greatly reduce patient
mortality, morbidity, and risk to others, as well as other treatments for associated problems, and (3) the stigma of
HIV infection and AIDS has declined. HIV partner notification is often incorporated into or operates in close
parallel with partner notification for other sexually transmitted infections. Given that as many as 40% of people
with HIV infection around the world are undiagnosed, HIV partner notification aims at informing at-risk
individuals, inviting them for testing, starting medical therapy for those who test positive for the virus, and
educating them as well as those who test negative about practices to reduce the risk of HIV infection. Effective
anti-retroviral therapy is also a form of prevention of the spread of HIV infection. Identifying those who have
undiagnosed HIV infection is a way to link them to treatment and care and to reduce their risk of infecting
others.
The AMA’s Council on Ethical and Judicial Affairs has proposed a strategy for dealing with patients with HIV
who are putting their partners at risk: Physicians should “attempt to persuade patients who are identified as HIV
positive to cease endangering others” and should “be aware of and adhere to state and local guidelines regarding
public health reporting and disclosure of HIV status when a patient who is identified as HIV positive poses
significant risk of infecting an identifiable third party. The doctor may, if permitted [by state law], notify the
endangered third party without revealing the identity of the source person.”79 This strategy limits the obligation
to an identifiable third party and permits, but does not require, notification of the third party, without,
technically, breaching confidentiality by disclosing “the identity of the source person.” Unfortunately, in many
cases informing a person that he or she is at risk is sufficient for him or her to identify the “source person.”
In contrast, World Health Organization (WHO) guidelines stress that “partner notification services should
always be voluntary.”80 A reason for emphasizing voluntariness is that the index patient’s cooperation is needed
to identify partners who should be notified. The main barriers to effective partner notification services include
the index patient who declines to provide information or share partners’ names or whose partners were
anonymous.81
As we have seen, some recommendations and guidelines stress the ethical permissibility of the physician’s
disclosure, whereas others focus on its obligatoriness. We need not choose between these two approaches
because they can be rendered coherent. There are circumstances in which it is obligatory to so act, centered on
our category 1 in the previous chart, whereas other circumstances render it either permissible to so act or
permissible not to so act. These are likely cases that fall in categories 2 and 3 that also border on category 1.
Assessments of probability and magnitude of harm often do not explicitly indicate whether unconsented-to
partner notification is obligatory even when permitted. The justification for disclosure is the same in both sorts
of case, namely, reduction of a risk of grave injury or death; but levels of risk and the possibility of a physician’s
effective action will vary from case to case. (These justificatory conditions are discussed in our requirements of
constrained balancing introduced in Chapter 1, pp. 22–24.)
In conclusion, disclosure to an at-risk third party is a morally worrisome act that challenges a central, long-
standing professional obligation of confidentiality,82 though historically this obligation has often not been
considered absolute within the medical profession.83 As a matter of public policy, officials must consider both
the critical need to protect endangered third parties and the impact of flexible or rigid societal rules of
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confidentiality—including which rules of confidentiality will save more lives in the long run, given that effective
protection depends on an individual’s provision of information about contacts.
Disclosure of genetic information to third parties. Another ethical problem about notifying at-risk parties arises
when physicians, genetic counselors, and others have genetic information about a particular individual that
stands to reveal important information about other family members. Individuals who learn that they have a
serious genetic condition may have a moral obligation to share that information with at-risk relatives, who may
then be able to take actions to reduce risks to themselves or their offspring or to seek treatment. Health care
providers should stress this obligation to their patients or clients. Genetic counselors, in particular, may have to
overcome their understandable proclivity for nondirective counseling and seek to persuade counselees to
disclose relevant information, even though in some ways it would be preferable for the counselors to make the
disclosure to ensure that adequate information is transmitted about risks and preventive or therapeutic options.
However, directive counseling differs from disclosure of the information to relatives against the counselee’s
explicit directive. We concur with the recommendation of the US Institute of Medicine Committee on Assessing
Genetic Risks that “confidentiality should be breached and relatives informed about genetic risks only when (1)
attempts to elicit voluntary disclosure fail, (2) there is a high probability of irreversible or fatal harm to the
relative, (3) the disclosure of the information will [likely] prevent the harm, (4) the disclosure is limited to the
information necessary for diagnosis or treatment of the relative, and (5) there is no other reasonable way to avert
the harm.”84
This recommendation closely matches our general approach of constrained balancing. Health care professionals
have a prima facie obligation to respect the confidentiality of an individual’s personal genetic information, but in
certain circumstances they have a right and sometimes an obligation to disclose that information to protect
others from harm even if the first party objects. As a general rule, when there is no appropriate consent, the
default is nondisclosure to family members at risk.
Some critics of this approach propose that we take more seriously the familial nature of genetic information.85
By analogy with a bank account, they recommend a model of genetic information as a joint account, whereas we
regard it as a personal account. The personal account model fits well with respect for autonomy, confidentiality,
maintenance of trust in health care relationships, and good practice in most of health care.86 In the joint account
or relational model, the default is the availability of genetic information to everyone on the account. The default
is followed unless there are good reasons not to do so, such as the probability of serious harm to the individual
from whom the genetic information was generated. In this approach, disclosure of genetic information to
relatives would not necessarily be a breach of confidentiality in a strict sense even if the source individual
opposed it, because the genetic information belongs to the relatives too. In some cases, it would be possible and
preferable to alert an at-risk relative, for instance, of the need to test for Huntington’s disease because of a family
history without specific reference to the index case.87
A justification of the joint account can be grounded in considerations of justice and reciprocity-based
beneficence. Its premise is that one family member should not be able to benefit from jointly valuable
information while excluding others from that information and its benefits. Relevant empirical research indicates
that many patients view genetic information, such as a genetic mutation, as familial, but consider other aspects
of genetic conditions, such as their effect on every-day health, as personal.88 Patients are usually willing to
disclose or to allow disclosure of narrowly shaped genetic information, especially to close relatives.
Nevertheless, if a joint account model, with a default of disclosure, is adopted, it is morally obligatory to inform
users of genetic services, at the point of entry, about the nature and limits of confidentiality, so they can choose
whether to proceed. The principle of respect for autonomy remains central to any ethically justified use of the
joint account model. Rather than changing the default about sharing of information with family members, it
would be wiser to further educate individuals about their responsibilities to the family members who could
benefit or avoid harm by obtaining this genetic information and then to help facilitate communication of the
information.89
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To reach beyond this example of genetic information: Informing and educating prospective and current patients
about the limits of confidentiality of the information generated in health care and about the conditions under
which such information may or will be disclosed to others is a vital service, even if patients occasionally object.
Given our knowledge that many patients have robust expectations about confidentiality, they should be informed
by mental health professionals and others about so-called conditional confidentiality.90
FIDELITY
According to Paul Ramsey, the fundamental ethical question in health care and research is, “What is the meaning
of the faithfulness of one human being to another?”91 Few today would agree that fidelity is the fundamental
moral norm in health care and research, but it remains a central and often underappreciated moral norm.
The Nature and Place of Fidelity
Obligations of fidelity arise whenever a physician or other health care professional establishes a significant
fiduciary relationship with a patient. For our purposes fiduciary obligation entails that the professional is
morally obligated to act faithfully for another’s benefit. To establish a fiduciary relationship is to give an explicit
or implicit promise to faithfully carry out or refrain from carrying out an activity. Abandonment of a patient is an
example of a breach of fidelity that amounts to disloyalty. Obligations and virtues of fidelity are important at the
intersection of research ethics and clinical ethics, where conflicts involving divided loyalties can arise, and we
begin with these conflicts.
Conflicts of fidelity and divided loyalties. Professional fidelity, or loyalty, has been traditionally conceived as
prioritizing the patient’s interests in two respects: (1) the professional effaces self-interest in any conflict with
the patient’s interests, and (2) the professional favors the patient’s interests over third-party interests. In practice,
however, fidelity has rarely, if ever, been so pristine. For instance, caring for patients in epidemics has often
been considered praiseworthy and virtuous rather than an obligatory enactment of fidelity, and physicians have
never been expected to care for a great many patients without compensation. Health care professionals also
regularly use their clinical skills to serve social purposes beyond the individual patient’s interests, including the
protection of public health. They may, for instance, recommend vaccination when, in a context of high rates of
immunization, its risks would outweigh its benefits to certain patients. Clinical skills also sometimes serve non-
health-related social activities, such as criminal justice and war, as well as religious and cultural practices such
as infant male circumcision. Finally, physicians sometimes serve as gatekeepers in society, and in this role
divided loyalties are troublesome even when unavoidable. Examples include providing psychiatric evaluation as
part of a criminal trial, performing employee reviews for an employer (as in the Bratt case examined earlier),
and conducting a medical review of a person’s disability insurance claims.92
Divided loyalties typically occur when fidelity to patients, subjects, or clients conflicts with allegiance to
colleagues, institutions, funding agencies, corporations, or the state. Conflicts in dual roles are intensely felt in
fields such as forensic medicine and military medicine. In these conflicts, two or more roles and their coupled
loyalties and obligations are sometimes incompatible and irreconcilable, forcing a moral choice.93
Third-party interests. Physicians, nurses, and hospital administrators sometimes find aspects of their role
obligations in conflict with their obligations to patients. In some cases, they have a therapeutic contract with a
party other than the patient. For instance, when parents bring a child to a physician for treatment, the physician’s
primary responsibility is to serve the child’s interests, even though the parents made the contract and the
physician has obligations of fidelity to the parents. The latter obligations are sometimes validly overridden, as
occurs when physicians go to court to oppose parents’ decisions that seriously threaten their children. Courts
have allowed adult Jehovah’s Witnesses, for example, to reject blood transfusions for themselves as competent
adults while disallowing parental rejections of medically necessary blood transfusions for their children. Parents
are sometimes appropriately charged legally with child neglect when they fail to seek or permit potentially
beneficial medical treatment recommended by physicians.94
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Institutional interests. In some conflicts, it is unclear what the health care professional owes the “patient.” The
institutions involved may not be health care institutions, but, in discharging their functions, they may need
medical information about individuals and may even provide some care for those individuals. Examples include
a physician’s contract to provide medical examinations of applicants for positions in a company or to determine
whether applicants for insurance policies are safe risks. In some circumstances the health care professional may
rightly not regard the person examined as his or her patient, but, even so, the professional has moral
responsibilities of due care including disclosure of serious risks ascertained through the medical examination.
In some jurisdictions the health care professional does not have a legal obligation to disclose the discovery of a
risk or of a disease to the examinee, but nondisclosure may be a morally dubious practice. At a minimum, health
care professionals have a moral responsibility to oppose, avoid, and withdraw from contracts that would require
them to withhold vital health information from examinees. Physicians often have “due care” obligations to
individuals who become their patients under a third-party contract in an institutional arrangement. Examples
include industries, prisons, the armed services, and professional sports teams.
Nevertheless, when care of an individual conflicts with institutional objectives and policies to which a health
professional is also committed, the individual’s needs do not always take precedence. For example, a military
physician must accept a different set of obligations than those of a nonmilitary physician to place the military’s
interests above both the patient’s and the physician’s interests. A moral dilemma may emerge for the military
physician in determining whether to certify a soldier suffering from a closed-head injury, resulting from an
improvised explosive device, as fit to return to the front lines. On the one hand, the soldier, while medically
stable and functional, continues to experience fatigue, problems in sleeping, and daily headaches and would be
at increased risk of worse impairments and post-traumatic stress syndrome if a similar incident occurred again.
On the other hand, his commanding officers have indicated their critical need for his particular expertise and
experience.95 Apart from such dilemmas, some actions so grossly violate canons of medical ethics that they
warrant disobedience of orders and defiance of superiors rather than loyalty and compliance. An example is a
commander’s order for a physician to help torture a prisoner of war.96
Medical assistance in prisons also presents moral challenges, in part because of the institutional mandate to
punish the criminal, which limits the obligations of fidelity to the criminal as patient. Medical values are
sometimes subordinated to the correctional institution’s functions, but the physician is expected to be loyal to
both. The correctional institution may expect physicians and other health care professionals to participate in the
administration of justice and punishment. Examples include surgical removal of a bullet for evidence when the
bullet is not a hazard to the inmate and can be safely left in place, forced examinations of inmates’ body cavities
for evidence of contraband drugs, and participation in corporal or capital punishment—for instance, by
administering a lethal injection.97 Moral questions also arise both about medical assessments of prisoners’
physical conditions in order to determine whether they can endure punishments and about medical monitoring of
prisoners during punishment. Such medical assessments and supervision can reduce the likelihood of extreme or
unintended injury, but participation in the actual administration of punishment, whether corporal or capital, is a
compromise of fidelity.98
Nursing. Nursing may be the area of health care with the most pervasive range of conflicts. In the latter part of
the twentieth century, codes of nursing ethics began to frame nurses’ moral responsibility in ways different from
earlier codes, which functioned to discourage nurses from making their own moral judgments. In 1950, the first
code of the American Nurses Association stressed the nurse’s obligation to carry out the physician’s orders,
whereas the 1976 revision stressed the nurse’s obligations to the patient. The current version emphasizes that the
nurse’s “primary commitment is to the patient, whether an individual, family, group, community, or population”
and that the nurse “promotes, advocates for, and protects the rights, health, and safety of the patient.”99 (See our
discussion in Chapter 2, pp. 34–35, of virtues associated with different conceptions of nursing.)
Moral conflicts can be expected wherever one group of professionals makes the decisions and orders their
implementation by other professionals who have not participated in the decision making. In one study of
relationships in health care, investigators examined different perceptions of ethical problems by nurses and
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doctors in acute care units. In structured interviews, both nurses and physicians said they frequently encountered
ethical problems. Most physicians (twenty-one of twenty-four) and most nurses (twenty-five of twenty-six)
recognized ethical conflicts within the health care team. In twenty-one of the twenty-five cases reported by
nurses, the ethical conflict was between a nurse and a physician, whereas only one physician reported a conflict
with a nurse rather than with another physician. The authors of the study conclude that it is likely that conflicts
with nurses occurred, but that the physicians “were not aware of them, or did not see conflict with a nurse as
forming an ethical problem.”100 Several features of the working relationship between physicians and nurses help
to explain these findings. Physicians commonly write orders and nurses execute them. Through their close
relationships with patients, nurses often experience, more immediately than physicians, problems that arise from
medical decisions.
According to another study of physicians and registered nurses caring for dying patients in intensive care units
(ICUs), the nurses experienced greater moral distress, perceived the moral climate in their ICU more negatively,
expressed less satisfaction with the quality of care, and experienced less collaboration than the physicians
reported. As a solution, the researchers appropriately proposed not only improving collaboration but also paying
explicit attention to situations that generate moral distress and to differences in role perspectives.101 Other
studies find a need to recognize and engage legitimate moral disagreement among different health care
professionals, including physicians, nurses, and administrators within a respectful moral community, before
moral conflicts arise that may compromise patient care.102
Problems of Conflict of Interest
In recent years, traditional rules of fidelity have often been threatened or weakened by conflicts of interest, a
fairly recent concern in medicine (and in biomedical ethics) in contrast to other professions such as law. A
conflict of interest exists when an impartial observer would determine that a professional’s judgments, decisions,
or actions are at risk of being unduly influenced by his or her personal interests, such as financial interests or
friendship.103 The risk is that the professional’s personal interests will create temptations, biases, and the like
that will lead to a betrayal of role responsibilities through judgments, decisions, and actions other than those
reasonably expected of a person in the role. The reasonable expectation is that clinicians will seek the patient’s
welfare and respect his or her rights, that researchers will pursue objective and valid results, and so forth. A
conflict of interest creates a risk that the professional in question will compromise these expectations and
thereby damage patients’ interests and rights, distort research, or teach trainees in a biased way.
The analysis and assessment of risks of different types of conflict of interest follow the risk chart introduced
earlier. The degree or level of risk depends on (1) the probability that the professional’s personal interests will
have an undue influence on his or her judgments, decisions, or actions, and (2) the magnitude of harm that may
occur as a result. Even if the circumstance of conflict does not in fact bias the individual’s judgment, and even if
no wrong is committed, it is still a conflict-of-interest situation that makes it reasonable to suppose that tainted
judgments might occur and to require that they be disclosed, mitigated, managed, or avoided altogether.
Conflicts of interest occur in medicine, health care, biomedical research, the development of clinical practice
standards, and the review of grant proposals and articles submitted for publication in all of these fields. Although
the medical profession has not paid adequate attention to nonfinancial conflicts, such as professional
advancement or friendship, which are no less important, numerous efforts are under way to address various
financial conflicts, including fee splitting, self-referring, accepting gifts, accepting fees for recruiting patients for
a research protocol, outside consulting with a regulated industry by government-employed physicians,
appointing industry-based physicians to government regulatory agencies, and industry-paid lecturing on an
industry product.
One issue is the referral of patients to medical facilities or services physicians own or in which they have a
financial investment. Self-referral threatens fidelity to patients’ interests by enlarging the temptation inherent in
fee-for-service to provide pointless, optional, or excessively expensive care. Physicians create these financial
conflicts of interest by owning or investing in medical facilities or services, such as diagnostic imaging centers,
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laboratories, or physical therapy services, to which they then refer patients. Physician ownership of radiation
therapy and physical therapy services, for instance, can increase use and costs, without compensatory benefits to
patients such as increased access.104 Self-referral is usually more problematic than fee-for-service because the
patient typically cannot identify the physician’s potential economic gain—unless it is explicitly disclosed—in
ordering additional procedures and thus cannot proceed cautiously, perhaps by seeking a second opinion.
In our judgment, physicians have an ethical obligation to disclose both financial and nonfinancial conflicts of
interest, but disclosures are not as widespread as they should be. According to a 2009 national survey, nearly
two-fifths of the responding physicians, across several medical specialties, did not entirely agree that they should
disclose to patients their financial relationships with drug or device companies.105 Fidelity and honesty require
such disclosure as an ethical minimum, though disclosure is rarely sufficient. For instance, it is unclear how a
vulnerable patient can effectively use disclosed information in the context of physician self-referral. Moreover,
legal or professional prohibition of self-referral is warranted in many types of cases.106
Third-party payers and institutional providers have imposed many constraints on medical decisions about
diagnostic and therapeutic procedures through mechanisms designed to control costs. These mechanisms
sometimes limit and constrict the physician’s ability to maintain fidelity to the patient because of incentives and
disincentives that can place the physician’s self-interest in conflict with the patient’s best medical interest. For
example, health maintenance organizations (HMOs) may withhold a substantial part of the primary physician’s
income. At the end of the year, they return part or all, depending on the overall financial condition of the HMO
and, in some cases, the physician’s productivity and frugality. This arrangement creates an incentive for
physicians to severely limit expensive procedures—a worrisome conflict of interest. The patient is in a markedly
different position when the physician has a conflict because of incentives to limit needed treatment than when
the physician has a conflict because of incentives to provide unnecessary treatment. In the latter situation,
patients often can obtain another opinion. In the former situation, patients may not be aware of a needed
treatment that is omitted.107 Both are ethically unacceptable, at least when the incentives are likely to influence
treatment decisions, and both require corrective measures.
Financial incentive structures such as those used in many diagnostic laboratories also create a motive for
physicians to limit both their time and expensive procedures. Physicians are paid by measurable output, and
annual payments are tied to productivity measures such as the number of slides read. But a rapid reading of data
compounds the risk of error, increasing risks of false-negative results and misdiagnosis. Pathologists who read
hundreds of slides per day looking for the presence of carcinoma will boost their salary in these arrangements
but also will increase the likelihood of failing to detect a carcinoma. Every physician will occasionally make a
mistake or follow an incorrect, yet excusable, strategy; but it is not morally excusable to make mistakes where
there is an inherent conflict of interest encouraging behavior that falls below an appropriate standard of due care.
Another set of conflicts of interest arises from gifts from pharmaceutical and medical device manufacturers. In
contrast to a widespread assumption that only large gifts create conflicts of interest, there is evidence that even
small gifts, such as pens, note pads, and lunches, intended to build and maintain relationships influence
physicians’ prescribing behavior.108 Moreover, gift relationships, however small, create a variety of temptations,
dependencies, friendships, and forms of indebtedness—all of which stand to create conflicts of interest with the
physician’s primary obligation to act in the best interest of the patients.109 Although disclosure to patients may
help to reduce the negative impact of several forms of conflict of interest, it appears to be relatively useless for
conflicts of interest created by industry gifts to physicians. More stringent regulations by institutions, including
academic medical centers, are needed to eliminate, curtail, or modify these common practices in the interactions
between, for example, industries and physicians. Institutional rules could include banning gifts, not accepting
funds for lunches at educational programs, and reducing the practice of accepting free samples.110
Conflicts of interest reach beyond practice to research. Interactions and partnerships involving industry,
government, and the academy are vitally important in the development, support, and conduct of biomedical
research to benefit human health, and yet they frequently harbor conflicts of interest.111 For instance, clinical
trials of pharmaceutical products are often funded by companies willing to assume the financial risk because the
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returns from successful trials are the lifeblood of the company. The joint financial advantages for physician-
investigators and corporations promote a relationship that may ensure a steady and reliable funding stream. But
this relationship also risks creating a motive for physician-investigators to find positive results or downplay
negative results, thereby compromising scientific objectivity. It is vital to control the process of interpretation
and assessment through objective procedures, backup checks, and independent controls such as data safety and
monitoring boards.112
Journals too should require researchers to provide information about sources of funds for the research.
Furthermore, as an Institute of Medicine (later the National Academy of Medicine) report recommended,
researchers should not conduct research involving human subjects if they have a significant financial stake in the
outcome of that research. For example, a researcher might hold a patent on a product being tested in a clinical
trial. However, there are good reasons to make exceptions in rare circumstances such as when an institutional
conflict-of-interest committee determines that an individual’s participation is essential for the safety or validity
of the research (perhaps because of the complexity of the procedure or device that the researcher developed) and
that it is possible to manage the conflict and ensure the integrity of the research.113
Deliberative assessments need to be made regarding ways to address these various types of conflict of interest.
For example, we might eliminate them, manage or mitigate them, or require disclosure of conflicts to parties at
risk. Each strategy is justifiable in some contexts, and each is preferable to the traditional practice of relying on
professional judgment or personal character to determine whether a conflict is actual, potential, or merely
apparent—a dubious set of distinctions since the potential, or so-called apparent, conflict often constitutes an
actual conflict of interest. Professionals sometimes view attempts to address conflicts of interest as negative
judgments on their and their colleagues’ character, as though they might be corrupt and might act against the
reasonable expectations of their professional roles in the pursuit of personal self-interest, but this assessment
misses the point of conflict-of-interest rules. Unconscious and unintentional distortions of professional
judgments, decisions, and actions are at least as important. It is difficult to perform individualized assessments
of the likelihood that a particular professional’s conflicts of interest will lead to a breach of professional
expectations. Accordingly, general rules, regulations, and impartial oversight are essential.
THE DISTINCTION BETWEEN CLINICAL ETHICS AND RESEARCH
ETHICS
Now that we have completed our examination of rules and virtues of veracity, privacy, confidentiality, and
fidelity, we turn to other dimensions of relationships between professionals and their patients or subjects, starting
with a basic distinction between clinical research and clinical medicine and how this distinction affects our
thinking about professional biomedical ethics.
Biomedical ethics has long drawn a line between clinical (medical and nursing) ethics and research ethics. This
line rests on a distinction between clinical practice and clinical research, a distinction that still deeply influences
how we conceptualize areas of medicine and biomedical science and how we understand the ethical rules
appropriate to them. The research-practice distinction also affects how we think about activities that are subject
to governmental regulation. Research has been heavily regulated in many countries because it has been thought
to place subjects at risk for the benefit of others and to investigate unconfirmed hypotheses about diagnoses and
treatments. By contrast, medical practice is far less regulated on grounds that it focuses on the patient’s best
interests and relies on interventions of proven benefit and acceptable risk.
This distinction also determines which activities must undergo review by an ethics committee. The general
conception has long been that if a component of research introduces risk in an activity involving a human
person, the component must undergo review to protect subjects. Nothing comparable exists at the national level
in most countries for medical practice. But the question is whether such a sharp distinction between research and
practice, as well as the parallel differences in ethical and regulatory frameworks, are truly warranted. Why,
morally, should practice be treated so differently from research when it comes to the oversight and protection of
clinical patients and research subjects?
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The Place and Significance of “Generalizable Knowledge”
The conventional assessment has been that research lacks a focus on personalized care. Its distinctive objective
is scientifically designed testing of a hypothesis aimed at developing or contributing to what US regulations—
and the bioethics literature generally—refer to as “generalizable knowledge.”114 By contrast, medical practice
interventions are aimed at diagnosis, preventive treatment, or therapy that stands to provide optimal therapeutic
benefit to each patient. In clinical medicine, risks are justified by an intervention’s potential benefit to the
individual patient, whereas in clinical research, risks are usually justified by the potential social benefit of the
research (sometimes combined with a possible benefit to the patient). In this conception, risk allocation sharply
differs in the clinic and in research. This idea has supported the view that clinical research and clinical practice
require different ethical rules, in accordance with the different objectives, roles, and relationships that
characterize each. Accordingly, there are distinct particular moralities—clinical ethics and research ethics—each
with its own system of moral norms and review.115
This entrenched distinction between research and practice is puzzling and morally questionable. First, the
boundaries between research and practice are often porous, especially when the two occur together in the same
health care institution(s), and each contributes to the other. A good example is pediatric oncology and its
remarkable practical successes in treatment in recent decades. In this field of medicine, research is intimately
intertwined with practice, and practice is often not divorced from new infusions of data from research. Second,
some areas of medicine use innovative techniques or practices that have never been scientifically validated
through research and lack regulatory approval for these uses. These practices are often regarded, rightly, as
experimental, which suggests that patients so treated are subjects of “research,” even if no effort is made to
produce generalizable knowledge, but only an effort to benefit the patient.116
Innovative treatments, including off-label uses of treatments (e.g., uses of prescription drugs to treat conditions
for which the drug has not been officially approved), fall short of the high validation standards set by
randomized clinical trials. Although the range of acceptable methods of obtaining knowledge in medicine is
controversial, it is morally unsatisfactory to allow physicians to use treatments that are either unapproved or new
on grounds that the patient-physician relationship is a private transaction immune from regulatory interference
and unaccountable to external oversight, such as a review committee. Many parts of medical practice conform to
this model, but, in general, there is no reason to think that well-designed clinical research is riskier than standard
forms of clinical practice based on innovative therapies.
Is Our Ethical Oversight of Research and Practice Coherent?
Accordingly, we need to examine whether we have a coherent moral conception of the ethical oversight of
research and practice. The central ethical issue is whether research projects require the higher level of scrutiny
that now occurs and whether clinical encounters need a lower level of scrutiny. If the risks are similar and the
need for consent to interventions is similar, arguably the oversight system should be relevantly similar,
regardless of the conventional categorizations of research and clinical practice. The time is now ripe for a closer
and more thorough examination of these categories and distinctions in biomedical ethics and public policy.117
Whatever the appropriate level of scrutiny and oversight of each of these activities, the dual roles of clinician
and investigator generate possible conflicts of obligation and of interest that require attention, as we will now
argue.
The Dual Roles of Clinician and Investigator
The “Declaration of Geneva, Physician’s Pledge” of the World Medical Association, as revised in 2017, affirms
that “the health and well-being of my patient will be my first consideration.”118 But can research involving
patients and other subjects or participants consistently honor this obligation? The dual roles of research scientist
and clinical practitioner pull in different directions, potentially creating significant conflicts of obligation and of
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interest. As an investigator, the physician acts to generate scientific knowledge to benefit individual patients and
populations, usually in the future. As a clinician, the physician has the responsibility to act in the best interests of
present patients. Accordingly, responsibilities to future generations may conflict with due care for current
patients who become research subjects.
Research involving human subjects is a vital social enterprise to advance science, but to be ethically justified it
must satisfy several conditions, including (1) a goal of valuable knowledge, (2) a reasonable prospect that the
research will generate the knowledge that is sought, (3) the necessity of using human subjects, (4) a favorable
balance of potential benefits over risks to the subjects, (5) fair selection of subjects, and (6) measures to protect
privacy and confidentiality. Only if these conditions have been met is it appropriate to invite potential subjects
(or their surrogates) to give their informed consent or refusal to participate. Consent can therefore be considered
a seventh condition that must be met.119
These conditions apply to both research that offers no prospect of direct medical benefit to the subject and
research that offers some prospect of direct medical benefit to the patient-subject and that may be conducted
during the course of the care of the patient. The term therapeutic research is potentially misleading because,
when misunderstood, it can draw attention away from the fact that research is being conducted. Clinical research
is distinguishable from both routine therapy and experimental or innovative therapy, which are directed at
particular patients. Attaching the term therapeutic to research may create a “therapeutic misconception,” in
which participants construe the protocol design as therapy directed at the individual rather than as research
designed to generate generalizable knowledge. (See further the discussion of therapeutic misconception in
Chapter 4, pp. 132–33.)
Because society encourages and supports extensive research and because investigators and subjects are unequal
in knowledge and vulnerability, public policy and review committees are responsible for ensuring that the
research meets the several conditions noted above. Some cases warrant a straightforward paternalistic decision.
For example, if healthy persons free of heart disease volunteer to participate in a research protocol to test an
artificial heart, as once happened,120 an institutional review board (IRB) should declare that the risk relative to
benefit for a healthy subject is too substantial to permit the research to enroll such subjects, whereas the risk
relative to benefit for a patient with a seriously diseased heart may be acceptable.
Conflicts in Clinical Trials
Controlled clinical trials are often essential to establish or confirm that an observed effect, such as reduced
mortality from a disease, results from a particular intervention rather than from an unknown variable in the
patient population. The evidence supporting many available treatments is tenuous, and some may have never
been adequately tested for either safety or efficacy. Even if adequate testing occurred at one time, the treatments
may no longer be as safe or as efficacious as new treatments—a matter of their comparative effectiveness. If
doubt surrounds the efficacy or safety of a treatment, or its relative merits in comparison to another treatment,
scientific research to resolve the doubt is in order.121
Controlled trials are scientific instruments intended to protect current and future patients against medical
enthusiasm, hunches, and outdated procedures and products. In these trials, one group receives the
investigational (or experimental) therapy, while a “control group” receives either a standard therapy or a placebo
(an inert preparation that resembles a drug in appearance) so that investigators can determine whether an
investigational therapy is more effective and safer than a standard therapy, placebo, or no treatment. Commonly,
subjects are randomly assigned to either control or investigational groups to avoid intentional or unintentional
bias. Randomization is designed to keep variables other than the treatments under examination from distorting
study results.
Blinding certain persons to some information about the randomized controlled trial (RCT) provides additional
protection against bias. An RCT may be single-blind (the subject does not know whether he or she is in the
control group or the experimental group), double-blind (neither the subject nor the investigator knows), or
unblinded (all parties know). Double-blind studies are designed to reduce bias in observations and
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interpretations by subjects, physicians, and investigators. Blinding the physician-investigator also serves an
ethical function, because it partially obviates the conflicts of obligation and of interest that arise for physicians
who are simultaneously engaged in clinical practice and research with the same patient(s).
Problems of consent. By design, subjects in RCTs usually do not know which treatment or placebo they will
receive. However, no justification exists for not disclosing to potential subjects the full set of methods,
treatments, and placebos (if any) that will be used, their known risks and probable benefits, and any known
uncertainties. Likewise, no justification exists for failing to disclose the rationale for the study, the fact of
randomization, how the trial differs from clinical practice, and available alternatives to participation. A
physician-researcher with dual responsibilities also has a fiduciary obligation to inform patient-subjects of any
relevant conflicts of interest.122 With this information, potential subjects will almost always have an adequate
basis for deciding whether to participate.
In conventional RCTs, investigators screen patients for eligibility and then provide the information just
discussed. If a patient consents to participate, he or she is then randomized to one arm of the study. However,
even when scientific evidence indicates that two proposed interventions are roughly equal in safety and efficacy,
patients may have a strong preference for one arm over another. Consider a situation in which two surgical
procedures for treating the same disease appear to have the same survival rate (say, an average of fifteen years)
and we want to test their effectiveness by an RCT. A patient might have a preference if treatment A has little risk
of death during the operation but a high rate of death after ten years, and treatment B has a high risk of death
during the operation or post-operative recovery but a low rate of death after recovery for thirty years. Factors
such as a patient’s age, family responsibilities, and other circumstances might lead to a preference for one over
the other. Accordingly, some patients may choose not to enter a particular RCT even though, from the standpoint
of safety and efficacy, the different arms are in clinical equipoise—our next topic of discussion.
The problem of clinical equipoise. Serving the patient’s best interests is intuitively inconsistent with assigning a
treatment randomly in order to promote social goals of accumulating knowledge and benefiting future patients.
It seems inconceivable that optimal medical care occurs by random assignment to an intervention or no
intervention. No two patients are alike, and ordinarily a physician should be able to select and modify the course
of therapy, as needed, to promote the patient’s best interests. The question is whether this traditional axiom of
medical ethics is consistent with RCTs.
Proponents argue that RCTs do not violate moral obligations to patients because they are used only in
circumstances in which justifiable doubt exists about the relative merits of existing, standard, and new therapies.
No one knows, prior to conducting the research, whether it is more advantageous to be in the control group or in
the experimental group. The community of reasonable physicians is therefore in a state of “clinical
equipoise.”123 On the basis of the available evidence, members of the relevant expert medical community are
uncertain or disagree about which intervention is superior and so are equally poised between the treatment
strategies under examination in the RCT. That is, they are equally uncertain or disagree about the known
advantages and disadvantages of the investigational treatment to be tested and the current treatment, placebo, or
no treatment the control group will receive. In this model, no patient will receive something known to be less
effective or to have a higher risk than an available alternative.
When patients are not asked to forgo a superior treatment, the use of RCTs is justifiable, especially in light of the
promise of benefit to future patients. In the absence of scientific grounds before the trial for preferring to be in
one group rather than another, a patient may prefer one over the other on the basis of hunches or intuitions about
effectiveness and safety or on the basis of factors not being studied in the trial. If two treatments for breast
cancer, for example, are in veritable clinical equipoise from the standpoint of survival, a woman still may prefer
the less disfiguring treatment.
Some critics of appeals to clinical equipoise as a way to establish the moral legitimacy of clinical trials are
concerned about an excessively narrow focus on the ethics of the clinical physician’s role, chiefly on whether
RCTs are consistent with physician duties in the physician-patient relationship. This approach, some critics
maintain, neglects society’s considerable interest in evidence-based health policy and advances in scientific
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understanding needed for drug approval and coverage decisions.124 This concern about the general justification
of RCTs offers a fair warning about the need to avoid an unduly narrow focus, but it does not negate the need to
investigate ethical conflicts in clinical trials, which is our focus in this section. Clinical equipoise is an important
threshold condition that must be met in the conduct of RCTs. However, it is not a sufficient condition of the
moral legitimacy of RCTs and does not by itself adequately guide social policy. Whether particular RCTs in fact
satisfy this threshold condition is understandably debated, as is appropriate governance of the research through
social policies.125
Finally, if a cooperating physician strongly believes prior to a trial that, based on available evidence, one therapy
is more beneficial or safer, he or she must decide whether to suspend this belief in the interests of scientific
objectivity and in deference to the views of the community of experts, who find themselves in clinical equipoise.
In this circumstance, as part of the informed consent process, the physician is morally obligated to disclose both
his or her personal conviction and that of the relevant community of experts to patients who are potential
candidates for the trial.126
The problem of placebo controls. Conducting placebo-controlled and no-treatment trials is controversial,
especially when an established and effective treatment exists for the condition under investigation. Critics argue
that the use of placebo controls is unethical because placebo-controlled trials may not be methodologically
superior and may deny patients treatment when treatment controls (a group that receives an established effective
intervention, called active controls in the literature) could be used.127 By contrast, defenders of placebo-
controlled trials contend that they are methodologically superior to active controlled trials and are frequently
essential in the process of scientific validation.128 Fortunately, all parties agree that use of a placebo is ethically
acceptable only if there is a reasonable prospect of producing scientifically valid information by this method. As
best we can determine, placebo-controlled trials are often methodologically superior to, more efficient than, and
less costly than active controlled trials. They can even be necessary to distinguish treatment effects. Nonetheless,
there are moral problems with their use.
The best strategy in addressing this controversy is to locate the conditions under which placebo use is ethically
acceptable and the conditions under which it is unacceptable. As a start, if an established effective intervention is
available for use in the population to be studied, using a placebo control is unethical if withholding the effective
intervention from subjects has a significant probability of being life-threatening, of causing permanent damage,
of causing irreversible disease progression, or of causing an unacceptable level of pain or suffering. Placebo use
is impermissible under these conditions because the risks of the research to subjects are too high, exceeding a
threshold, or the overall benefits do not outweigh the risks to subjects.
By contrast, if no established safe and effective intervention exists to treat the medical problem under study, the
use of a placebo is permissible in research on a new investigational therapy. In some cases, the relevant expert
community may have significant doubts about the benefits provided by approved available treatments or many
patients may not be able to use the available treatment(s) because of their medical condition. Ethical
acceptability may also be contingent on other conditions. For example, patients may have refused an established
effective treatment under conditions in which withholding that treatment will not cause serious or irreversible
harm. Here again use of a placebo may be justified.
In a now classic case of a questionable use of placebo, a conflict erupted over placebo-controlled trials of AZT
(azidothymidine) in the treatment of AIDS. Promising laboratory tests led to a trial (phase I) to determine the
safety of AZT among patients with AIDS. Several patients showed clinical improvement. Because AIDS was
then considered invariably fatal, many people argued that compassion dictated making it immediately available
to all patients with AIDS and, perhaps, to those who were antibody-positive to the AIDS virus. However, the
pharmaceutical company (Burroughs Wellcome Company, later GlaxoSmithKline Pharmaceuticals) did not have
an adequate supply of the drug to satisfy this plan, and, as required by federal regulations, it used a placebo-
controlled trial of AZT to determine its effectiveness for certain groups of patients with AIDS. A computer
randomly assigned some patients to AZT and others to a placebo. For several months, no major differences
emerged in effectiveness, but then patients receiving the placebo began to die at a significantly higher rate. Of
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the 137 patients on the placebo, 16 died. Of the 145 patients on AZT, only 1 died.129 Many moral problems
surround starting such a placebo-controlled trial when a disease appears to be universally fatal and no promising
alternative to the new treatment exists, and related questions arise about when to stop a trial as well as how to
distribute a new treatment.
A second example comes from RCTs in surgery, which are rare, particularly when placebos are used. There are
concerns that surgical procedures are too easily introduced without sufficiently rigorous evidence of their
efficacy or safety. In one case, surgical researchers sought a clinical trial to determine whether transplanting fetal
neural tissue into the brains of patients with Parkinson’s disease (a disorder of motor function, marked by
tremor, rigidity, unsteady walking, and unstable posture) would be safe and effective. Standard medical
treatment consisted of levodopa, which might not restore lost motor function, might have adverse effects over a
long period, and might not adequately control new manifestations of the disease. Researchers argued that
surgical therapy using cells is more like the administration of pharmaceutical agents than like conventional
surgical procedures. In proposing a randomized, double-blind, placebo-controlled trial, they maintained that a
placebo control was scientifically preferable to the use of standard medical treatment as the control because
surgery itself may have some effects, such as evoking patients’ favorable subjective responses. The placebo
consisted of sham surgery, that is, the administration of general anesthesia followed by bilateral surgery, which
involves a skin incision with a partial burr hole that does not penetrate the skull’s inner cortex. This sham
surgery was to be compared to two other procedures that differed from each other only in the amount of fetal
tissue transplanted. All participants received antibiotics and immunosuppression medication for six months. The
thirty-six subjects in this study all knew that twelve of them would undergo sham surgery and researchers
promised all of them free access to the real surgery if the trial demonstrated its net benefits.130
The main argument against the use of sham surgery as a placebo control in this research focuses on the
substantial risks from the procedure and the anesthesia. The best research design, from the standpoints of both
the investigators involved and future patients, conflicted with investigators’ obligations of beneficence and
nonmaleficence to current patients invited to serve as research subjects. Among several ethical questions, one is
whether the patient-subjects’ informed consent131 was sufficient to justify proceeding with the research.132 It is
doubtful that informed consent is sufficient by itself in such cases. Consent should be considered together with
the level of risk involved, the need to reduce bias by blinding participants, the alternatives that might obviate the
need for sham surgery, and the like.
Nonetheless, if we assume that other conditions for ethically justified research are met, genuinely informed
consents go a long way toward justifying the conduct of placebo-controlled trials when prospective subjects are
informed about the following: A placebo will be used, subjects could be randomized to a placebo arm, the
reasons that using a placebo is part of the design, the benefits and risks of already available treatments, the risks
of refusing those treatments, the option of receiving the treatment if symptoms worsen, and the right to withdraw
for any reason and at any time from the study. Understanding these elements of the research is a necessary
condition of an adequately informed consent in this context, but even an elevated informed consent does not by
itself justify use of placebo-controlled trials.
Early Termination of and Withdrawal from Clinical Trials
Physician-researchers sometimes face difficult questions about whether to stop a clinical trial before its planned
end—particularly whether to withdraw patient-subjects from the trial before sufficient scientific data are
available to support definitive conclusions. Access to data is limited during clinical trials to protect the integrity
of the research. Consequently, physicians may be excluded from access to critical information about trends. If
they became aware of trends prior to the point of statistical significance, they might pull their patients from the
trial, and numerous withdrawals might invalidate the research.
However, if a physician determines that a particular patient’s condition is deteriorating and that this patient’s
best interests are served by withdrawal from the research, the physician morally must be free to act on behalf of
the patient and recommend withdrawal. In an RCT, it may be agonizingly difficult to determine whether the
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research as a whole should be stopped, even if some physician-researchers are satisfied by what they have
observed. One procedural solution is to differentiate roles, distinguishing between the responsibilities of
individual physicians who must make decisions regarding their own patients and those of a data and safety
monitoring board (DSMB) established to determine whether to continue or stop a trial. Unlike patients’
physicians, the DSMB is charged to consider the impact of its decision on future patients as well as on current
patient-subjects. One of its functions is to stop or recommend stopping a trial if accumulated scientific data
indicate that uncertainty has been reduced and equipoise no longer prevails,133 as happened in the original AZT
trial for AIDS. In order to ensure the integrity of the clinical trial, the DSMB must be independent of the
investigators and sponsors and able to make objective, impartial analyses, judgments, and recommendations.134
This differentiation of roles by using a DSMB is procedurally sound, but it relocates, rather than resolves, some
ethical questions. The DSMB must determine whether it is legitimate to impose or to continue to impose risks on
current patient-subjects in order to establish a higher degree of probability of the superiority of one treatment
over another. It should determine whether clinical equipoise has been disturbed (i.e., eradicated) from the
perspective of impartial observers in the expert medical community.135 However, the individual physician and
his or her patient will be primarily concerned with whether clinical uncertainty (and equipoise) has been
eliminated or substantially reduced for them.
Many questions are relevant to a patient-subject’s decision to withdraw from an RCT based on such information,
including questions about interim data and early trends. Trends are often misleading and sometimes prove to be
temporary aberrations, but they might be relevant at a given point to a patient-subject’s decision about whether
to continue to participate even if the evidence does not satisfy statisticians or the expert medical community. If
information about trends is not to be released prior to the completion or early termination of the RCT, potential
subjects need to be informed of this rule and accept it in the informed consent process as a condition of
participation.
Justifying Conditions for Randomized Clinical Trials
Despite the several problems we have identified, RCTs are justified—including those involving placebo controls
—if they satisfy the following seven substantive and procedural conditions (in addition to the general conditions
of justified research previously identified):136
1. 1. Clinical equipoise genuinely exists in the community of relevant and impartial medical experts.
2. 2. The trial is designed as a crucial experiment to determine whether an investigational therapeutic
alternative is superior to available alternatives and shows scientific promise of achieving this result.
3. 3. An IRB or its functional equivalent has approved the protocol and certified that no physician-
investigator has a conflict of interest or incentive that would threaten either the patient-physician
relationship or impartiality in the conduct of research.
4. 4. Patient-subjects have given a genuinely informed consent (as we analyze this concept in Chapter 4).
5. 5. Placebos and no-treatment options cannot be used if an effective treatment exists for the condition being
studied and that condition threatens death, grave injury, or serious morbidity in the absence of the
treatment.
6. 6. A data and safety monitoring board either will end the trial if statistically significant data disrupt
clinical equipoise or will supply physicians and patients with substantive safety and therapeutic
information that has emerged and shown to be relevant to a reasonable person’s decision to remain in or to
withdraw from the trial.
7. 7. Physicians have the right to recommend withdrawal and patients have the right to withdraw at any time.
CONCLUSION
In this chapter we have interpreted and specified the principles and virtues of respect for autonomy,
nonmaleficence, beneficence, and justice, as analyzed in the previous four chapters. We have concentrated on
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obligations and virtues of veracity, privacy, confidentiality, and fidelity, and we have explored the basis,
meaning, limits, and stringency of the obligations that govern contexts of professional–patient and professional–
subject relationships—and in some cases professional–professional relationships, such as those between
physicians and nurses. Similarly, we have shown that moral virtues are often as important as moral obligations
for health professionals grappling with these moral problems. These virtues include care, compassion, and
discernment as well as the specific virtues examined in this chapter of truthfulness, respect for privacy,
confidentiality, and fidelity, each of which we linked to moral obligations (a correspondence discussed in
Chapter 8, pp. 414–15).
We have now completed our discussion in Part II of this volume of the four clusters of principles of biomedical
ethics, their corresponding virtues, the rules derivative from these principles, and their implications for
professional ethics. In the final two chapters, in Part III, we will examine the place of ethical theory and method
in biomedical ethics.
NOTES
1. 1. We use the term patient in the title of this chapter although, in many of the relationships we discuss,
patient is not the most accurate term. We make clarifications and qualifications as the chapter proceeds.
For human beings who are being studied in research we use the label human subjects, in line with tradition
and federal regulations. However, in recent bioethical discourse, the term participant has become widely
used in order to highlight voluntary partnership and cooperation in research. No term is perfect. To many,
“subject” suggests being subjected to or under the control of others, while “participant” neglects that many
are enrolled in research by others, such as parents, rather than being voluntary participants. See the
discussion of this problem in National Bioethics Advisory Commission (NBAC), Ethical and Policy
Issues in Research Involving Human Participants, vol. 1: Report and Recommendations (Bethesda, MD:
NBAC, August, 2001), chap. 1, fn 1.
2. 2. Code of Medical Ethics of the American Medical Association, 2016–2017 Edition (Chicago: AMA,
2017), p. 1—the Principles of Medical Ethics being “the primary component of the Code”; and Current
Opinions of the Judicial Council of the American Medical Association (Chicago: AMA, 1981), p. ix. For
the original 1847 code, see American Medical Association, Code of Medical Ethics (Chicago: AMA,
1847), p. 88, available at https://www.bioethicscourse.info/codesite/1847code (accessed August 11,
2018).
3. 3. Annette C. Baier, “Why Honesty Is a Hard Virtue,” Reflections on How We Live (Oxford: Oxford
University Press, 2010), p. 109.
4. 4. Henry Sidgwick, The Methods of Ethics, 7th ed. (Indianapolis, IN: Hackett, 1907), pp. 315–16. Baier
examines honesty constructively from a background of Hume’s thought, and Alasdair MacIntyre examines
lying in reaction to Kant’s and Mill’s thought. See Baier, “Why Honesty Is a Hard Virtue”; and MacIntyre,
Ethics and Politics, Selected Essays, vol. 2 (Cambridge: Cambridge University Press, 2006), chap. 6 (on
Mill) and chap. 7 (on Kant).
5. 5. G. J. Warnock, The Object of Morality (London: Methuen, 1971), p. 85.
6. 6. See, for example, W. D. Ross, The Right and the Good (Oxford: Clarendon, 1930), chap. 2.
7. 7. For a trust-based approach to medicine and nursing, as well as other professional roles, see Terrence M.
Kelly, Professional Ethics: A Trust-Based Approach (Lanham, MD: Lexington Books, 2018). For a study
of the “essential role that trust plays in effective doctor–patient relationships,” despite its frequent neglect,
see Nicola Brennan, Rebecca Barnes, Mike Calnan, et al., “Trust in the Health-Care Provider–Patient
Relationship: A Systematic Mapping Review of The Evidence Base,” International Journal for Quality in
Health Care 25 (2013): 682–88.
8. 8. Cf. Raanan Gillon, “Is There an Important Moral Distinction for Medical Ethics Between Lying and
Other Forms of Deception?” Journal of Medical Ethics 19 (1993): 131–32; and Jennifer Jackson, Truth,
Trust, and Medicine (London: Routledge, 2001). A survey of public attitudes toward deception in
medicine also found that “while the majority of … respondents opposed outright lying in medical
contexts, they were prepared to accept partial disclosure and the use of placebos when it is in the patient’s
interests or when it is what the person would want.” See Jonathan Pugh, Guy Kahane, Hannah Maslen,
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and Julian Savulescu, “Lay Attitudes toward Deception in Medicine: Theoretical Considerations and
Empirical Evidence,” AJOB Empirical Bioethics 7, no 1 (2016): 31–38.
9. 9. On different sociocultural contexts of nondisclosure and the need in health care for what is often called
“cultural competence,” see Antonella Surbone, “Telling the Truth to Patients with Cancer: What Is the
Truth?” Lancet Oncology 7 (2006): 944–50. See further Loretta M. Kopelman, “Multiculturalism and
Truthfulness: Negotiating Difference by Finding Similarities,” South African Journal of Philosophy 19
(2000): 51–55.
10. 10. Bettina Schöne-Seifert and James F. Childress, “How Much Should the Cancer Patient Know and
Decide?” CA—A Cancer Journal for Physicians 36 (1986): 85–94.
11. 11. See Donald Oken, “What to Tell Cancer Patients: A Study of Medical Attitudes,” JAMA: Journal of
the American Medical Association 175 (1961): 1120–28; and Dennis H. Novack et al., “Changes in
Physicians’ Attitudes toward Telling the Cancer Patient,” JAMA: Journal of the American Medical
Association 241 (March 2, 1979): 897–900.
12. 12. N. Horikawa, T. Yamazaki, M. Sagawa, and T. Nagata, “Changes in Disclosure of Information to
Cancer Patients in a General Hospital in Japan,” General Hospital Psychiatry 22 (2000): 37–42. See
similar results in T. S. Elwyn, M. D. Fetters, W. Gorenflo, and T. Tsuda, “Cancer Disclosure in Japan:
Historical Comparisons, Current Practices,” Social Science and Medicine 46 (May 1998): 1151–63; and a
follow-up study by N. Horikawa, T. Yamazaki, M. Sagawa, and T. Nagata, “The Disclosure of Information
to Cancer Patients and Its Relationship to Their Mental State in a Consultation-Liaison Psychiatry Setting
in Japan,” General Hospital Psychiatry 21 (September–October 1999): 368–73.
13. 13. Elisa J. Gordon and Christopher K. Daugherty, “‘Hitting You over the Head’: Oncologists’ Disclosure
of Prognosis to Advanced Cancer Patients,” Bioethics 17 (2003): 142–68; Andrea C. Enzinger, Baohui
Zhang, Deborah Schrag, and Holly G. Prigerson, “Outcomes of Prognostic Disclosure: Associations with
Prognostic Understanding, Distress, and Relationship with Physician among Patients with Advanced
Cancer,” Journal of Clinical Oncology 33 (2015): 3809–16; Rebecca G. Hagerty, Phyllis N. Butow, Peter
M. Ellis, et al., “Communicating with Realism and Hope: Incurable Cancer Patients’ Views on the
Disclosure of Prognosis,” Journal of Clinical Oncology 23 (2005): 1278–88.
14. 14. James Boswell, Life of Johnson, as quoted in Alan Donagan, The Theory of Morality (Chicago:
University of Chicago Press, 1997), p. 89.
15. 15. Nicholas A. Christakis, Death Foretold: Prophecy and Prognosis in Medical Care (Chicago:
University of Chicago Press, 1999), esp. chap. 5. See also G. G. Palmboom, D. L. Willems, N. B. A. T.
Janssen, and J. C. J. M. de Haes, “Doctor’s Views on Disclosing or Withholding Information on Low
Risks of Complication,” Journal of Medical Ethics 33 (2007): 67–70.
16. 16. Joel Stein, “A Fragile Commodity,” JAMA: Journal of the American Medical Association 283
(January 19, 2000): 305–6.
17. 17. Thurstan B. Brewin, “Telling the Truth” (Letter), Lancet 343 (June 11, 1994): 1512.
18. 18. Antonella Surbone, “Truth Telling to the Patient,” JAMA: Journal of the American Medical
Association 268 (October 7, 1992): 1661–62; and Surbone, Claudia Ritossa, and Antonio G. Spagnolo,
“Evolution of Truth-Telling Attitudes and Practices in Italy,” Critical Reviews in Oncology-Hematology
52 (December 2004): 165–72. See also Baback B. Gabbay et al., “Negotiating End-of-Life Decision
Making: A Comparison of Japanese and U. S. Residents’ Approaches,” Academic Medicine 80 (2005):
617–21.
19. 19. Daniel Rayson, “Lisa’s Stories,” JAMA: Journal of the American Medical Association 282 (November
3, 1999): 1605–6.
20. 20. Linda T. Kohn, Janet M. Corrigan, and Molla S. Donaldson, for the Institute of Medicine Committee
on Quality of Health Care in America, To Err Is Human: Building a Safer Health System (Washington,
DC: National Academies Press, 2000). This influential report defines a medical error as “the failure of a
planned action to be completed as intended (i.e., error of execution) or the use of a wrong plan to achieve
an aim (i.e., error of planning),” p. 45.
21. 21. For a critical analysis of “medical harm” and “iatrogenic illness” (literally, illness induced by the
physician), see Virginia A. Sharpe and Alan I. Faden, Medical Harm: Historical, Conceptual, and Ethical
Dimensions of Iatrogenic Illness (Cambridge: Cambridge University Press, 1998).
22. 22. See Robert D. Truog, David M. Browning, Judith A. Johnson, and Thomas H. Gallagher, Talking with
Patients and Families about Medical Error (Baltimore: Johns Hopkins University Press, 2011), p. vii. The
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quotation is from the Foreword by Lucian L. Leape.
23. 23. See Rae M. Lamb et al., “Hospital Disclosure Practices: Results of a National Survey,” Health Affairs
22 (2003): 73–83; Lamb, “Open Disclosure: The Only Approach to Medical Error,” Quality and Safety in
Health Care 13 (2004): 3–5; Lisa Lehmann et al., “Iatrogenic Events Resulting in Intensive Care
Admission: Frequency, Cause, and Disclosure to Patients and Institutions,” American Journal of Medicine
118 (2005): 409–13; and Allen Kachalia, “Improving Patient Safety through Transparency,” New England
Journal of Medicine 369 (2013): 1677–79.
24. 24. See Thomas H. Gallagher et al., “Patients’ and Physicians’ Attitudes Regarding the Disclosure of
Medical Errors,” JAMA: Journal of the American Medical Association 289, no. 8 (February 26, 2003):
1001–7; and Gallagher et al., “Choosing Your Words Carefully: How Physicians Would Disclose Harmful
Medical Errors to Patients,” Archives of Internal Medicine 166 (2006): 1585–93. See also David K. Chan
et al., “How Surgeons Disclose Medical Errors to Patients: A Study Using Standardized Patients,” Surgery
138 (November 2005): 851–58.
25. 25. Lisa Iezzoni et al., “Survey Shows That at Least Some Physicians Are Not Always Open or Honest
with Patients,” Health Affairs 31, no. 2 (2012): 383–91.
26. 26. See Steve S. Kraman and Ginny Hamm, “Risk Management: Extreme Honesty May Be the Best
Policy,” Annals of Internal Medicine 131 (December 21, 1999): 963–67; Allen Kachalia et al., “Liability
and Costs before and after the Implementation of a Medical Error Disclosure Program,” Annals of Internal
Medicine 153 (2010): 213–21; and Susan D. Moffatt-Bruce, Francis D. Ferdinand, and James I. Fann,
“Patient Safety: Disclosure of Medical Errors and Risk Mitigation,” Annals of Thoracic Surgery 102
(2016): 358–62. See also Nancy Berlinger, After Harm: Medical Error and the Ethics of Forgiveness
(Baltimore: Johns Hopkins University Press, 2005).
27. 27. Joan Vogel and Richard Delgado, “To Tell the Truth: Physicians’ Duty to Disclose Medical Mistakes,”
UCLA Law Review 28 (1980): 55.
28. 28. Truog et al., Talking with Patients and Families about Medical Error.
29. 29. The quoted phrase is Joel Feinberg’s.
30. 30. Catherine J. Chamberlain et al., “Disclosure of ‘Nonharmful’ Medical Errors and Other Events: Duty
to Disclose,” Archives of Surgery 147, no. 3 (March 2012): 282–86. Most discussions specifically focus on
or assume “harmful medical errors,” even if they simply entitle their discussions “medical errors.” See, for
example, the important study by Thomas H. Gallagher et al., “Patients’ and Physicians’ Attitudes
Regarding the Disclosure of Medical Errors.”
31. 31. The Ethics Manual of the American College of Physicians calls on physicians to “disclose to patients
information about procedural or judgment errors made in the course of care if such information is material
to the patient’s well-being.” American College of Physicians, American College of Physicians Ethics
Manual, 6th ed., published in the Annals of Internal Medicine 156 (2012): 73–104, and available at
https://www.acponline.org/clinical-information/ethics-and-professionalism/acp-ethics-manual-sixth-
edition/acp-ethics-manual-sixth-edition (accessed August 15, 2018).
32. 32. In some circumstances, clinicians may have an ethical obligation not only to report colleagues’
medical mistakes through appropriate institutional mechanisms but also to disclose these mistakes to
patients. See Thomas H. Gallagher, Michelle M. Mello, Wendy Levinson, et al., “Talking with Patients
about Other Clinicians’ Errors,” Sounding Board, New England Journal of Medicine 369 (2013): 1752–
57.
33. 33. Joanna M. Cain, “Is Deception for Reimbursement in Obstetrics and Gynecology Justified?”
Obstetrics & Gynecology 82 (September 1993): 475–78.
34. 34. Kaiser Family Foundation, “Survey of Physicians and Nurses,” available at
http://www.kff.org/1999/1503 (accessed August 20, 2007).
35. 35. Matthew K. Wynia et al., “Physician Manipulation of Reimbursement Rules for Patients: Between a
Rock and a Hard Place,” JAMA: Journal of the American Medical Association 283 (April 12, 2000):
1858–65; and the editorial commentary by M. Gregg Bloche, “Fidelity and Deceit at the Bedside,” in the
same issue, pp. 1881–84.
36. 36. The case for this assessment is made by Bloche, “Fidelity and Deceit at the Bedside,” p. 1883.
37. 37. Victor G. Freeman et al., “Lying for Patients: Physician Deception of Third-Party Payers,” Archives of
Internal Medicine 159 (October 25, 1999): 2263–70.
https://www.acponline.org/clinical-information/ethics-and-professionalism/acp-ethics-manual-sixth-edition/acp-ethics-manual-sixth-edition
http://www.kff.org/1999/1503
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38. 38. Rachel M. Werner et al., “Lying to Insurance Companies: The Desire to Deceive among Physicians
and the Public,” American Journal of Bioethics 4 (Fall 2004): 53–59, with eleven commentaries on pp.
60–80. See also Dennis H. Novack et al., “Physicians’ Attitudes toward Using Deception to Resolve
Difficult Ethical Problems,” JAMA: Journal of the American Medical Association 261 (May 26, 1989):
2980–85. We discuss this study in Chapter 1 (pp. 18–19), where we consider debates about the meaning,
range, and scope of deception and lying.
39. 39. Another example comes from restrictive criteria (unchanged for decades) for third-party
reimbursement for home nutrition support. See Karen Martin and Carol McGinnis, “Home Nutrition
Support: Ethics and Reimbursement,” Nutrition in Clinical Practice 31, no. 3 (June 2016): 325–33.
Beyond possible deception of third-party payers, patients’ requests for false or misleading medical
diagnoses or certificates arise in many contexts, such as medical excuses from work or school. One ethical
analysis focuses on the challenges of “fake diagnoses” or “false or misleading certificates” to benefit
patients/clients in four scenarios in Swedish health care: sterilization, asylum, virginity (a cultural
requirement for marriage in certain communities), and adoption (from another country). When
considerable caution is exercised, some of these measures can be justified in some circumstances. See G.
Helgesson and N. Lynöe, “Should Physicians Fake Diagnoses to Help Their Patients?” Journal of Medical
Ethics 34 (2008): 133–36. In the United States, medical teams have often given a “medical excuse” to
reluctant potential living kidney donors, sometimes by providing a false excuse, sometimes by a more
general statement about the lack of suitability to be a living donor. Lainie F. Ross defends the latter in
“What the Medical Excuse Teaches Us about the Potential Living Donor as Patient,” American Journal of
Transplantation 10, no. 4 (2010): 731–36. In Chapter 9 we discuss such a case in light of different ethical
theories.
40. 40. Thomas L. Carson, Lying and Deception: Theory and Practice (New York: Oxford University Press,
2010), p. 2.
41. 41. Griswold v. Connecticut, 381 U.S. 479 (1965), at 486. On the deep influence of Griswold on the
development of the right to privacy, see Joanna L. Grossman, “Griswold v. Connecticut: The Start of the
Revolution,” Verdict, June 8, 2015, available at https://verdict.justia.com/2015/06/08/griswold-v-
connecticut-the-start-of-the-revolution (accessed August 30, 2018).
42. 42. See, for example, Adam D. Moore, Privacy Rights: Moral and Legal Foundations (University Park:
Pennsylvania State University Press, 2010), p. 5; Michael Katell and Adam D. Moore, “Introduction: The
Value of Privacy, Security and Accountability,” in Privacy, Security and Accountability: Ethics, Law and
Policy, ed. Adam D. Moore (London: Rowman & Littlefield International, 2016), p. 3.
43. 43. See Jeffrey M. Skopek, “Reasonable Expectations of Anonymity,” Virginia Law Review 101 (2015):
691–762.
44. 44. Anita L. Allen, “Genetic Privacy: Emerging Concepts and Values,” in Genetic Secrets: Protecting
Privacy and Confidentiality in the Genetic Era, ed. Mark A. Rothstein (New Haven, CT: Yale University
Press, 1997), pp. 31–59. For a wide-ranging account of the meanings and types of “privacies” and their
moral and political value, see Allen, Unpopular Privacy: What Must We Hide (New York: Oxford
University Press, 2011), which includes a defense of “paternalistic privacy” policies. For other
examinations of privacy, see Daniel J. Solove, Understanding Privacy (Cambridge, MA: Harvard
University Press, 2008), which argues that there are multiple forms of privacy, related by virtue of family
resemblances; and Helen Nissenbaum, Privacy in Context: Technology, Policy, and the Integrity of Social
Life (Stanford, CA: Stanford University Press, 2010), which develops an omnibus principle of “contextual
integrity” and derives context-relative rights from it on a sector-by-sector basis (see esp. p. 238).
45. 45. In an illuminating historical study, Sarah E. Igo examines “privacy’s significance as a cultural
sensibility and public value” and shows that it has served as a “catch-all” for a variety of concerns about
modern life, social organization, and technology. Igo, The Known Citizen: A History of Privacy in Modern
America (Cambridge, MA: Harvard University Press, 2018).
46. 46. Charles Fried, “Privacy: A Rational Context,” Yale Law Journal 77 (1968): 475–93.
47. 47. Warren and Brandeis, “The Right to Privacy,” Harvard Law Review 4 (1890): 193–220.
48. 48. Thomson, “The Right to Privacy,” Philosophy & Public Affairs 4, no. 4 (Summer 1975): 295–314, as
reprinted in Philosophical Dimensions of Privacy: An Anthology, ed. Ferdinand David Schoeman (New
York: Cambridge University Press, 1984), pp. 272–89, esp. 280–87. By contrast, Judith Wagner DeCew
views privacy as “a multifaceted cluster concept” without deriving it completely from other interests. See
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DeCew, In Pursuit of Privacy: Law, Ethics, and the Rise of Technology (Ithaca, NY: Cornell University
Press, 1997). For a critique of Thomson’s theory, see Thomas Scanlon, “Thomson on Privacy,” Philosophy
& Public Affairs 4, no. 4 (Summer 1975): 315–22.
49. 49. James Rachels, “Why Privacy Is Important,” p. 292; and Edward Bloustein, “Privacy as an Aspect of
Human Dignity,” both in Philosophical Dimensions of Privacy, ed. Schoeman.
50. 50. See Fried, “Privacy: A Rational Context.”
51. 51. Although we consider this argument primary, the consequentialist argument also has considerable
merit. These arguments are not mutually exclusive.
52. 52. Joel Feinberg, Harm to Self, vol. 3 in The Moral Limits of the Criminal Law (New York: Oxford
University Press, 1986), chap. 19.
53. 53. On issues in public health ethics, see James F. Childress, Ruth R. Faden, Ruth D. Gaare, et al., “Public
Health Ethics: Mapping the Terrain,” Journal of Law, Medicine & Ethics 30 (2002): 170–78; Madison
Powers and Ruth Faden, Social Justice: The Moral Foundations of Public Health and Health Policy (New
York: Oxford University Press, 2006), especially pp. 80–99; Ronald Bayer, Lawrence O. Gostin, Bruce
Jennings, and Bonnie Steinbock, Public Health Ethics: Theory, Policy, and Practice (New York: Oxford
University Press, 2006); and Ruth Gaare Bernheim, James F. Childress, Richard J. Bonnie, and Alan L.
Melnick, Essentials of Public Health Ethics (Burlington, MA; Jones and Bartlett Learning, 2015).
54. 54. See James F. Childress, “Surveillance and Public Health Data: The Foundation and Eyes of Public
Health,” in Bernheim, Childress, Bonnie, and Melnick, Essentials of Public Health Ethics, chap. 5; and
Lisa M. Lee, Charles M. Heilig, and Angela White, “Ethical Justification for Conducting Public Health
Surveillance without Patient Consent,” American Journal of Public Health 102 (January 2012): 38–44.
For thorough and historically grounded analyses of and strong support for public health surveillance, see
Amy L. Fairchild, Ronald Bayer, and James Colgrove, Searching Eyes: Privacy, the State, and Disease
Surveillance (Berkeley: University of California Press, 2007); and Fairchild, Bayer, and Colgrove,
“Privacy, Democracy and the Politics of Disease Surveillance,” Public Health Ethics 1, no. 1 (2008): 30–
38.
55. 55. See Wendy K. Mariner, “Mission Creep: Public Health Surveillance and Medical Privacy,” Boston
University Law Review 87 (2007): 347–95.
56. 56. The diabetes program nods to patients’ autonomy by allowing them to opt out of all aspects of the
program except the registry. See Shadi Chamany et al., “Tracking Diabetes: New York City’s A1C
Registry,” Milbank Quarterly 87, no. 3 (2009): 547–70, with responses; and Clarissa G. Barnes, Frederick
L. Brancati, and Tiffany L. Gary, “Mandatory Reporting of Noncommunicable Diseases: The Example of
the New York City A1C Registry (NYCAR),” Virtual Mentor, American Medical Association Journal of
Ethics 9 (December 2007): 827–31. For analysis and criticism, see Janlori Goldman et al., “New York
City’s Initiatives on Diabetes and HIV/AIDS: Implications for Patient Care, Public Health, and Medical
Professionalism,” American Journal of Public Health 98 (May 2008): 16–22.
57. 57. See Lucian V. Torian et al., “Striving toward Comprehensive HIV/AIDS Surveillance: The View from
New York City,” Public Health Reports 122 (2007 Supplement 1): 4–6; and Amy L. Fairchild and Ronald
Bayer, “HIV Surveillance, Public Health, and Clinical Medicine: Will the Walls Come Tumbling Down?”
New England Journal of Medicine 365 (August 25, 2011): 685–87.
58. 58. On the latter point, see Goldman et al., “New York City’s Initiatives on Diabetes and HIV/AIDS,” p.
17.
59. 59. See Mark A. Rothstein, “Genetic Secrets: A Policy Framework,” in Genetic Secrets, ed. Rothstein,
chap. 23.
60. 60. See Andreas-Holger Maehle, Contesting Medical Confidentiality: Origins of the Debate in the United
States, Britain, and Germany (Chicago: University of Chicago Press, 2016), which looks at the contested
journeys of medical confidentiality in these three countries in the late nineteenth and early twentieth
centuries. See also Philip Rieder, Micheline Louis-Courvoisier, and Philippe Huber, “The End of Medical
Confidentiality? Patients, Physicians and the State in History,” Medical Humanities 42 (2016): 149–54,
which argues “that medical practices of secrecy were regularly attacked in the past, and that the nature of
medical confidentiality evolved through time depending on physicians’ values and judgements” and
societal pressures.
61. 61. Mark Siegler, “Confidentiality in Medicine—A Decrepit Concept,” New England Journal of Medicine
307 (1982): 1518–21. See also Bernard Friedland, “Physician–Patient Confidentiality: Time to Re-
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examine a Venerable Concept in Light of Contemporary Society and Advances in Medicine,” Journal of
Legal Medicine 15 (1994): 249–77; and, on continued erosion of the concept, Beverly Woodward,
“Confidentiality, Consent and Autonomy in the Physician-Patient Relationship,” Health Care Analysis 9
(2001): 337–51.
62. 62. Estate of William Behringer v. Medical Center at Princeton, 249 N.J. Super. 597, 592 A.2d 1251
(1991).
63. 63. Barry D. Weiss, “Confidentiality Expectations of Patients, Physicians, and Medical Students,” JAMA:
Journal of the American Medical Association 247 (1982): 2695–97. According to a later study in the
United Kingdom, respondents “believe that few professionals have access to their records but indicated
that other people should have access if required.” Bolton Research Group, “Patients’ Knowledge and
Expectations of Confidentiality in Primary Health Care: A Quantitative Study,” British Journal of General
Practice 50 (2000): 901–2.
64. 64. George L. Anesi, “The ‘Decrepit Concept’ of Confidentiality, 30 Years Later,” Virtual Mentor 14, no.
9 (2012): 708–11.
65. 65. See the UK General Medical Council, Confidentiality: Good Practice in Handling Patient Information
(January 2017), 9a and 13–15, available at https://www.gmc-uk.org/-/media/documents/confidentiality-
good-practice-in-handling-patient-information—english-0417_pdf-70080105 (accessed August 12,
2018). Based on extensive consultations with the public and practitioners, the process for developing this
guidance, which took effect April 25, 2017, offers an excellent model for medical-public engagement on
standards for confidentiality. See Ipsos MORI Social Research Institute, Exploring Patient and Public
Attitudes towards Medical Confidentiality: Findings from Discussion Groups and In-depth Interviews,
prepared for the General Medical Council (GMC), April 2016, available at https://www.gmc-
uk.org/-/media/documents/Exploring_patient_and_public_attitudes_towards_medical_confidentiality_FIN
AL_270416 _65939141 (accessed August 12, 2018).
66. 66. Bratt v. IBM, 467 N.E.2d 126 (1984); Bratt, et al. v. IBM, 785 F.2d 352 (1986).
67. 67. American Psychiatric Association, Psychiatric Services in Correctional Facilities, 3rd ed.
(Washington, DC: American Psychiatric Association, 2016); Emil R. Pinta, “Decisions to Breach
Confidentiality When Prisoners Report Violations of Institutional Rules,” Journal of the American
Academy of Psychiatry and the Law 37 (2009): 150–54.
68. 68. Tarasoff v. Regents of the University of California, 17 Cal. 3d 425 (1976); 131 California Reporter 14
(1976). The majority opinion was written by Justice Tobriner; the dissenting opinion was written by
Justice Clark.
69. 69. See Kenneth Appelbaum and Paul S. Appelbaum, “The HIV Antibody-Positive Patient,” in
Confidentiality versus the Duty to Protect: Foreseeable Harm in the Practice of Psychiatry, ed. James C.
Beck (Washington, DC: American Psychiatry Press, 1990), pp. 127–28.
70. 70. Griffin Sims Edwards, “Doing Their Duty: An Empirical Analysis of the Unintended Effect of
Tarasoff v. Regents on Homicidal Activity,” Journal of Law and Economics 57, no. 2 (May 2014): 321–48.
He argues, “The original intention of the [Tarasoff-style duty-to-warn] law was to deter dangerous patients
from committing heinous crimes, but what may actually have happened was that the law changed the
incentives to the patient and the doctor such that the patient has an incentive to withhold homicidal
tendencies, and the doctor has an incentive to not explore homicidal tendencies. … The policy
implications are simple and fairly easily employed. A change in law to no duty or discretionary duty
should decrease homicides” (p. 344). Edwards also provides a chart of duty-to-warn laws in different
states in the United States (p. 325).
71. 71. For views to the contrary, see Michael H. Kottow, “Medical Confidentiality: An Intransigent and
Absolute Obligation,” Journal of Medical Ethics 12 (1986): 117–22; and Kenneth Kipnis, “A Defense of
Unqualified Medical Confidentiality,” American Journal of Bioethics 6 (2006): 7–18 (followed by critical
commentaries, pp. 19–41).
72. 72. Jean-Pierre Soubrier, “Self-Crash Murder–Suicide: Psychological Autopsy Essay and Questions about
the Germanwings Crash,” Crisis: The Journal of Crisis Intervention and Suicide Prevention 37, no. 6
(2016): 399–401; Romeo Vitelli, “After the Germanwings Crash: Why Did Andreas Lubitz Crash Flight
9525?” Psychology Today, February 16, 2017, available at
https://www.psychologytoday.com/us/blog/media-spotlight/201702/after-the-germanwings-crash
(accessed August 11, 2018).
https://www.gmc-uk.org/-/media/documents/confidentiality-good-practice-in-handling-patient-information%E2%80%94english-0417_pdf-70080105
https://www.gmc-uk.org/-/media/documents/Exploring_patient_and_public_attitudes_towards_medical_confidentiality_FINAL_270416 _65939141
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73. 73. (Model) Professional Code for Physicians in Germany—MBO-Ä 1997, article 9, as published in
Resolutions of the 121st German Medical Assembly 2018 in Erfurt, available at
https://www.bundesaerztekammer.de/fileadmin/user_upload/downloads/pdf-Ordner/MBO/MBO-
AE_EN_2018 (accessed August 12, 2018). The official, authorized version of this document is the
German original.
74. 74. Volk v. DeMeerleer, 386 P.3d 254 (Wa. 2016). On the potential conflicts between this decision and the
guidance of the AMA Code of Medical Ethics and the annotations by the American Psychiatric
Association, see Jennifer L. Piel and Rejoice Opara, “Does Volk v DeMeerleer Conflict with the AMA
Code of Medical Ethics on Breaching Patient Confidentiality to Protect Third Parties?” AMA Journal of
Ethics 20, no. 1 (2018): 10–18, available at https://journalofethics.ama-assn.org/article/does-volk-v-
demeerleer-conflict-ama-code-medical-ethics-breaching-patient-confidentiality (accessed August 13,
2018).
75. 75. Grant Gillett, “AIDS and Confidentiality,” Journal of Applied Philosophy 4 (1987): 15–20, from
which this case study has been adapted.
76. 76. See Suzanne E. Landis, Victor J. Schoenbach, David J. Weber, et al., “Results of a Randomized Trial
of Partner Notification in Cases of HIV Infection in North Carolina,” New England Journal of Medicine
326 (January 9, 1992): 101–6. See also Michael D. Stein et al., “Sexual Ethics: Disclosure of HIV-Positive
Status to Partners,” Archives of Internal Medicine 158 (February 1998): 253–57.
77. 77. Shona Dalai, Cheryl Johnson, Virginia Fonner, et al., “Improving HIV Test Uptake and Case Finding
with Assisted Partner Notification Services,” AIDS 31, no. 13 (August 24, 2017): 1867-76.
78. 78. These provisions are drawn, with some modifications, from World Health Organization, Guidelines on
HIV Self-Testing and Partner Notification: Supplement to Consolidated Guidelines on HIV Testing
Services (Geneva: WHO, December 2016), available at
http://apps.who.int/iris/bitstream/handle/10665/251655/9789241549868-eng ?
sequence=1&TSPD_101_R0=5b1daef969957fc81e5694e365c2019bv6300000000000000026877ab49ffff0
0000000000000000000000000005b72ff58002d7d6933 (accessed August 14, 2018).
79. 79. AMA Code of Medical Ethics 2016–2017 Edition, 8:1, p. 125. This provision was adopted in June
2008, updated in 2010 and again in 2016 (copyright 2018); while its wording has changed somewhat, its
content has remained reasonably constant in recent years.
80. 80. World Health Organization, Guidelines on HIV Self-Testing and Partner Notification.
81. 81. Sarah Magaziner, Madeline C. Montgomery, Thomas Bertrand, et al., “Public Health Opportunities
and Challenges in the Provision of Partner Notification Services: The New England Experience,” BMC
Health Services Research 18, no. 1 (January 31, 2018): 75, available at
https://bmchealthservres.biomedcentral.com/track/pdf/10.1186/s12913-018-2890-7 (accessed August 14,
2018).
82. 82. See discussion of this problem, using an absolutist, rule-oriented solution notably different from our
on-balance strategy, in Kipnis, “A Defense of Unqualified Medical Confidentiality” (and responses to his
claim in the same journal issue).
83. 83. Robert Baker, “Confidentiality in Professional Medical Ethics,” American Journal of Bioethics 6
(2006): 39–41.
84. 84. Lori B. Andrews et al., eds. (for the Committee on Assessing Genetic Risks, Institute of Medicine),
Assessing Genetic Risks: Implications for Health and Social Policy (Washington, DC: National
Academies Press, 1994), p. 278, and see 264–73. For an argument that medical examiners and forensic
pathologists have an ethical (but not a legal) duty to warn a deceased person’s relatives about genetics-
related risks, such as sudden cardiac death, or about risks from environmental exposure that could affect
them too, see Bernice Elger, Katarzyna Michaud, and Patrice Mangin, “When Information Can Save
Lives: The Duty to Warn Relatives about Sudden Cardiac Death and Environmental Risks,” Hastings
Center Report 40 (May–June 2010): 39–45.
85. 85. Michael Parker and Anneke Lucassen, “Genetic Information: A Joint Account?” British Medical
Journal 329 (July 17, 2004): 165–67.
86. 86. This personal-account model is the primary model internationally. See Sandi Dheensa et al., “Health-
care Professionals’ Responsibility to Patients’ Relatives in Genetic Medicine: A Systematic Review and
Synthesis of Empirical Research,” Genetics in Medicine 18 (2016): 290–301.
https://www.bundesaerztekammer.de/fileadmin/user_upload/downloads/pdf-Ordner/MBO/MBO-AE_EN_2018
https://journalofethics.ama-assn.org/article/does-volk-v-demeerleer-conflict-ama-code-medical-ethics-breaching-patient-confidentiality
http://apps.who.int/iris/bitstream/handle/10665/251655/9789241549868-eng ?sequence=1&TSPD_101_R0=5b1daef969957fc81e5694e365c2019bv6300000000000000026877ab49ffff00000000000000000000000000005b72ff58002d7d6933
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87. 87. Anneke Lucassen and Roy Gilbar, “Alerting Relatives about Heritable Risks: The Limits of
Confidentiality,” BMJ 361 (April 5, 2018). Available at https://www.bmj.com/content/361/bmj.k1409.full
and also at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5885756/ (accessed August 12 and 31, 2018).
88. 88. Sandi Dheensa, Angela Fenwick, and Anneke Lucassen, “‘Is This Knowledge Mine and Nobody
Else’s? I Don’t Feel That.’ Patient Views about Consent, Confidentiality and Information-Sharing in
Genetic Medicine,” Journal of Medical Ethics 42 (2016): 174–79. A philosophical view of the relational
or connected self that could support this position appears in Heather Widdows, The Connected Self: The
Ethics and Governance of the Genetic Individual, Cambridge Bioethics and Law (Cambridge: Cambridge
University Press, 2013), esp. pp. 81–84. Rather than emphasizing the familial nature of genetic
information or special familial obligations, Madison K. Kilbride bases the duty to share potentially helpful
genetic information with family members on the general principle of rescue—that is, to help others in
need (as we discuss in Chapter 6); by contrast, S. Matthew Liao and Joran MacKenzie stress special
obligations in familial relationships. See Kilbride, “Genetic Privacy, Disease Prevention, and the Principle
of Rescue”; and Liao and MacKenzie, “Genetic Information, the Principle of Rescue, and Special
Obligations,” both in the Hastings Center Report 48, no. 3 (2018): 10–17, and 18–19, respectively.
89. 89. Agatha M. Gallo, Denise B. Angst, and Kathleen A. Knafl, “Disclosure of Genetic Information within
Families: How Nurses Can Facilitate Family Communication,” American Journal of Nursing 109, no. 4
(2009): 65–69.
90. 90. See Mary Alice Fisher, The Ethics of Conditional Confidentiality: A Practice Model for Mental Health
Professionals (New York: Oxford University Press, 2013).
91. 91. Paul Ramsey, The Patient as Person (New Haven, CT: Yale University Press, 1970), p. xii.
92. 92. See M. Gregg Bloche, “Clinical Loyalties and the Social Purposes of Medicine,” JAMA: Journal of
the American Medical Association 281 (January 20, 1999): 268–74; and Bloche, The Hippocratic Myth:
Why Doctors Are under Pressure to Ration Care, Practice Politics, and Compromise Their Promise to
Heal (New York: Palgrave Macmillan, 2011).
93. 93. See Stephen Toulmin, “Divided Loyalties and Ambiguous Relationships,” Social Science and
Medicine 23 (1986): 784; and Michael D. Robertson and Garry Walter, “Many Faces of the Dual-Role
Dilemma in Psychiatric Ethics,” Australian and New Zealand Journal of Psychiatry 42 (2008): 228–35.
94. 94. See In re Sampson, 317 N.Y.S.2d (1970); and In re McCauley, 409 Mass. 134, 565 N.E.2d 411 (1991).
95. 95. See broader questions of dual loyalties in military contexts, in comparison with sports medicine,
occupational health, and health care in prisons, in Institute of Medicine (now National Academy of
Medicine), Military Medical Ethics: Issues Regarding Dual Loyalties: Workshop Summary (Washington,
DC: National Academies Press, 2009). See also Solomon R. Benatar and Ross E. G. Upshur, “Dual
Loyalty of Physicians in the Military and in Civilian Life,” American Journal of Public Health 98
(December 2008): 2161–67; and Laura Sessums et al., “Ethical Practice under Fire: Deployed Physicians
in the Global War on Terrorism,” Military Medicine 174 (2009): 441–47.
96. 96. In Oath Betrayed: Torture, Medical Complicity, and the War on Terror (New York: Random House,
2006), Steven H. Miles asks, “Where were the doctors and nurses at Abu Ghraib?” and challenges medical
and health professionals to recognize their responsibilities to disarmed captives and detainees. See also M.
Gregg Bloche and Jonathan H. Marks, “When Doctors Go to War,” New England Journal of Medicine
352, no. 1 (2005): 3–6; Bloche, The Hippocratic Myth, chaps. 7 and 8; Michael L. Gross, Bioethics and
Armed Conflict: Moral Dilemmas of Medicine and War (Cambridge, MA: MIT Press, 2006); and Chiara
Lepora and Joseph Millum, “The Tortured Patient: A Medical Dilemma,” Hastings Center Report 41
(May–June 2011): 38–47.
97. 97. See Curtis Prout and Robert N. Ross, Care and Punishment: The Dilemmas of Prison Medicine
(Pittsburgh, PA: University of Pittsburgh Press, 1988); Michael Puisis, ed., Clinical Practice in
Correctional Medicine, 2nd ed. (New York: Mosby, 2006); and Kenneth Kipnis, “Ethical Conflict in
Correctional Health Services,” in Conflict of Interest in the Professions, ed. Michael Davis and Andrew
Stark (Oxford: Oxford University Press, 2001), pp. 302–15.
98. 98. In contrast to virtually all of the developed world, the United States maintains capital punishment and
has increasingly medicalized it through adoption of lethal injection. The AMA code bans physician
participation in executions but does not count some actions as participation, including testifying on the
prisoner’s medical history, diagnoses, or mental state related to competence to stand trial or on the
prisoner’s medical diagnoses related to the legal assessment of competence for execution; relieving the
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condemned prisoner’s acute suffering while awaiting execution; or certifying death after someone else has
declared it. See Code of Medical Ethics of the American Medical Association, 2016–2017 Edition, 9.7.3,
pp. 166–76. The Principles of Medical Ethics and the Opinions of the AMA Council on Ethical and
Judicial Affairs make up the AMA Code of Medical Ethics. See also Lee Black and Robert M. Sade,
“Lethal Injection and Physicians: State Law vs Medical Ethics,” JAMA: Journal of the American Medical
Association 298 (December 19, 2007). For challenges to the AMA’s ban, see Lawrence Nelson and
Brandon Ashby, “Rethinking the Ethics of Physician Participation in Lethal Injection Execution,”
Hastings Center Report 41 (May–June 2011): 28–37.
99. 99. Code of Ethics for Nurses with Interpretive Statements (Silver Spring, MD: American Nurses
Association, 2015), p. v.
100. 100. Gregory F. Gramelspacher, Joel D. Howell, and Mark J. Young, “Perceptions of Ethical Problems by
Nurses and Doctors,” Archives of Internal Medicine 146 (March 1986): 577–78. See also R. Walker, S.
Miles, C. Stocking, and M. Siegler, “Physicians’ and Nurses’ Perceptions of Ethics Problems on General
Medical Services,” Journal of General Internal Medicine 6 (1991): 424–29. Similar themes emerged in a
Canadian study by Alice Gaudine, Sandra M. LeFort, Marianne Lamb, and Linda Thorne, “Clinical
Ethical Conflicts of Nurses and Physicians,” Nursing Ethics 18 (2011): 9–19.
101. 101. Ann B. Hamric and Leslie J. Blackhall, “Nurse-Physician Perspectives on the Care of Dying Patients
in Intensive Care Units: Collaboration, Moral Distress, and Ethical Climate,” Critical Care Medicine 35
(2007): 422–29. A Canadian study stresses similarities between physicians and nurses in moral
commitments and reasoning related to end-of-life care and finds that differences are often a function of
hierarchical structures and assigned roles. It concludes that the moral distress experienced by each group
could be reduced by “cross disciplinary discussion and mutual recognition of the burden carried by the
other.” See Kathleen Oberle and Dorothy Hughes, “Doctors’ and Nurses’ Perceptions of Ethical Problems
in End-of-Life Decisions,” Journal of Advanced Nursing 33, no. 6 (2001): 707–15.
102. 102. See Carol Pavlish, Katherine Brown-Saltzman, Patricia Jakel, and Alyssa Fine, “The Nature of
Ethical Conflicts and the Meaning of Moral Community in Oncology Practice,” Oncology Nursing Forum
41, no. 2 (March 2014): 130–40.
103. 103. Compare our definition with that of a recent report from the Institute of Medicine: A conflict of
interest is “a set of circumstances that create a risk that professional judgments or actions regarding a
primary interest [such as patient welfare or objective research results] will be unduly influenced by a
secondary interest [such as financial gain or a personal relationship].” Institute of Medicine (now National
Academy of Medicine), Conflict of Interest in Medical Research, Education, and Practice, ed. Bernard Lo
and Marilyn J. Field (Washington, DC: National Academies Press, 2009), pp. 45–46, passim. Marc A.
Rodwin argues, unpersuasively in our view, that, in contrast to traditional legal concepts of conflict of
interest, these definitions create conceptual confusion and will lead to policies that cannot be implemented
effectively; Rodwin, “Attempts to Redefine Conflicts of Interest,” Accountability in Research: Policies in
Quality Assurance (December 6, 2017), available at
http://www.tandfonline.com/doi/full/10.1080/08989621.2017.1405728 (accessed August 15, 2018).
104. 104. Jean M. Mitchell and T. R. Sass, “Physician Ownership of Ancillary Services: Indirect Demand
Inducement or Quality Assurance?” Journal of Health Economics 14 (August 1995): 263–89; and, for a
study, see Jean M. Mitchell and Jonathan Sunshine, “Consequences of Physicians’ Ownership of Health
Care Facilities—Joint Ventures in Radiation Therapy,” New England Journal of Medicine 327 (November
19, 1992): 1497–501; AMA Council on Ethical and Judicial Affairs, “AMA Code of Medical Ethics’
Opinions on the Physician as Businessperson,” 2013 version, available at https://journalofethics.ama-
assn.org/article/ama-code-medical-ethics-opinions-physician-businessperson/2013-02 (accessed August
31, 2018). See, more broadly, the Institute of Medicine, Committee on Conflict of Interest in Medical
Research, Education, and Practice, Conflict of Interest in Medical Research, Education, and Practice.
Chapter 6 focuses on financial interests in physician self-referral and in medical companies whose
products physicians prescribe, use, or recommend. This report covers many forms of conflict of interest in
medical practice, research, and education discussed in this section.
105. 105. Iezzoni et al., “Survey Shows That at Least Some Physicians Are Not Always Open or Honest with
Patients,” p. 383.
106. 106. For an examination of efforts in the United States (and Japan and France) to address self-referral, see
Marc A. Rodwin, Conflicts of Interest and the Future of Medicine (New York: Oxford University Press,
http://www.tandfonline.com/doi/full/10.1080/08989621.2017.1405728
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2011), esp. pp. 117–21, 145–47. See also Bruce J. Hillman, “Trying to Regulate Imaging Self-Referral Is
Like Playing Whack-A-Mole,” American Journal of Roentgenology 189 (2007): 267–68.
107. 107. See E. Haavi Morreim, Balancing Act: The New Medical Ethics of Medicine’s New Economics
(Boston: Kluwer Academic, 1991), which has influenced our discussion.
108. 108. Adriane Fugh-Berman and Shahram Ahari, “Following the Script: How Drug Reps Make Friends and
Influence Doctors,” PLOS Medicine 4 (April 2007): 621–25; Jason Dana and George Loewenstein, “A
Social Science Perspective on Gifts to Physicians from Industry,” JAMA: Journal of the American
Medical Association 290 (July 9, 2003): 252–55; and Richard F. Adair and Leah R. Holmgren, “Do Drug
Samples Influence Resident Prescribing Behavior? A Randomized Trial,” American Journal of Medicine
118 (2005): 881–84.
109. 109. Dana Katz et al., “All Gifts Large and Small: Toward an Understanding of the Ethics of
Pharmaceutical Industry Gift-Giving,” American Journal of Bioethics 3 (Summer 2003): 39–45,
accompanied by commentaries. A summary and analysis of the relevant psychological research appears in
Jason Dana, “How Psychological Research Can Inform Policies for Dealing with Conflicts of Interest in
Medicine,” in Institute of Medicine, Conflict of Interest in Medical Research, Education, and Practice,
Appendix D, pp. 358–74. The amount of money some parts of industry put into promotion in these ways
indicates their conviction that such promotional activities are effective.
110. 110. For several proposals, see Troyen A. Brennan et al., “Health Industry Practices That Create Conflicts
of Interest: A Policy Proposal for Academic Medical Centers,” JAMA: Journal of the American Medical
Association 295 (January 25, 2006): 429–33. See also Institute of Medicine, Conflict of Interest in Medical
Research, Education, and Practice, esp. chaps. 5 and 6.
111. 111. See AAMC Task Force on Financial Conflicts of Interest in Clinical Research, “Protecting Subjects,
Preserving Trust, Promoting Progress: Principles and Recommendations for Oversight of an Institution’s
Financial Interests in Human Subjects Research (I–II),” Academic Medicine 78 (2003): 225–45; and
Teddy D. Warner and John P. Gluck, “What Do We Really Know about Conflicts of Interest in Biomedical
Research?” Psychopharmacology 171 (2003): 36–46.
112. 112. See several chapters in part 4, “Clinical Research,” in Conflicts of Interest in Clinical Practice and
Research, ed. Roy G. Spece, Jr., David S. Shimm, and Allen E. Buchanan (New York: Oxford University
Press, 1996).
113. 113. See further Institute of Medicine, Conflict of Interest in Medical Research, Education, and Practice,
chap. 4.
114. 114. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research,
The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research
(Washington, DC: DHEW Publication OS 78–0012), pp. 2–3; Tom L. Beauchamp and Yashar Saghai,
“The Historical Foundations of the Research-Practice Distinction in Bioethics,” Theoretical Medicine and
Bioethics 33 (2012): 45–56; and Code of Federal Regulations, Title 45 (Public Welfare), Part 46
(Protection of Human Subjects), sec. 102 (2005),
http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html (accessed July 15, 2011).
115. 115. Cf. Franklin G. Miller, “Revisiting the Belmont Report: The Ethical Significance of the Distinction
between Clinical Research and Medical Care,” APA Newsletter on Philosophy and Medicine 5 (Spring
2006): 10–14; and Miller and Howard Brody, “The Clinician-Investigator: Unavoidable but Manageable
Tension,” Kennedy Institute of Ethics Journal 13 (2003): 329–46.
116. 116. Nancy E. Kass, Ruth R. Faden, Steven N. Goodman, Peter Pronovost, Sean Tunis, and Tom L.
Beauchamp, “The Research-Treatment Distinction: A Problematic Approach for Determining Which
Activities Should Have Ethical Oversight,” Hastings Center Report (Special Report) 43 (2013): S4–S15.
117. 117. Ruth R. Faden, Nancy E. Kass, Steven N. Goodman, Peter Pronovost, Sean Tunis, and Tom L.
Beauchamp, “An Ethics Framework for Learning Healthcare Systems: A Departure from Traditional
Research Ethics and Clinical Ethics,” Hastings Center Report (Special Report) 43 (2013): S16–S27.
118. 118. This pledge was formerly known as the “Declaration of Geneva, Physician’s Oath,” adopted by the
General Assembly of the World Medical Association, Geneva, Switzerland, 1948 (when the wording in
this particular passage was slightly different) and most recently amended October 2017, available at
https://www.wma.net/policies-post/wma-declaration-of-geneva/ (accessed August 14, 2018).
119. 119. As discussed in Chapter 7, pp. 286–90, the research must not exploit populations or participants.
Versions of several of these conditions appear in the Nuremberg Code and the US Department of Health
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and Human Services, Protection of Human Subjects, 45 CFR 46, HHS regulations, which include four
subparts: subpart A, also known as the Federal Policy or the “Common Rule”; subpart B, additional
protections for pregnant women, human fetuses, and neonates; subpart C, additional protections for
prisoners; and subpart D, additional protections for children, as revised in 2017 with general
implementation January 21, 2019. See also Ezekiel J. Emanuel, David Wendler, and Christine Grady,
“What Makes Clinical Research Ethical?” JAMA: Journal of the American Medical Association 283 (May
24/31, 2000): 2701–11; and James F. Childress, Priorities in Biomedical Ethics (Philadelphia:
Westminster Press, 1981), chap. 3.
120. 120. Disclosed by surgeon William DeVries at the University of Utah; see Denise Grady, “Summary of
Discussion on Ethical Perspectives,” in After Barney Clark: Reflections on the Utah Artificial Heart
Program, ed. Margery W. Shaw (Austin: University of Texas Press, 1984), p. 49.
121. 121. On some basic ethical issues about comparative effectiveness research, see Ruth R. Faden, Tom L.
Beauchamp, and Nancy Kass, “Informed Consent, Comparative Effectiveness Research, and Learning
Healthcare,” New England Journal of Medicine 370 (February 20, 2014): 766–68. Although we mainly
use the terms treatment and therapy, our discussion in this section also applies to diagnostic and
preventive procedures, among others.
122. 122. See Gunnel Elander and Göran Hermerén, “Placebo Effect and Randomized Clinical Trials,”
Theoretical Medicine 16 (1995): 171–82; and Gerald Logue and Stephen Wear, “A Desperate Solution:
Individual Autonomy and the Double-Blind Controlled Experiment,” Journal of Medicine and Philosophy
20 (1995): 57–64.
123. 123. See Benjamin Freedman, “Equipoise and the Ethics of Clinical Research,” New England Journal of
Medicine 317 (July 16, 1987): 141–45; and Eugene Passamani, “Clinical Trials—Are They Ethical?” New
England Journal of Medicine 324 (May 30, 1991): 1590–91. Thirty years after Freedman’s influential
article appeared, the debate about “clinical equipoise” continues. See, for example, the contrasting
arguments under the topic “Head to Head: Is the Concept of Clinical Equipoise Still Relevant to
Research?” in BMJ 359 (December 28, 2017). Spencer Phillips Hey, Alex John London, and Charles
Weijer argue that we have no better framework for justifying research involving patient participation.
Annette Rid and Franklin Miller argue that it is a mistake to use “clinical equipoise” to try to align the
ethics of clinical research with the ethics of clinical practice; they instead propose that clinical research
protocols be evaluated according to whether the risks to participants are acceptable in light of the
anticipated benefits to them and/or to the society.
124. 124. Franklin G. Miller and Steven Joffe, “Equipoise and the Dilemma of Randomized Clinical Trials,”
New England Journal of Medicine 364 (February 3, 2011): 476–80. These authors argue that “equipoise is
fundamentally flawed as a criterion for determining whether a randomized clinical trial is justified,” but
their argument only supports the claim that equipoise is flawed if interpreted as a sufficient condition of
the justification of RCTs; the proper claim is that equipoise is only a necessary condition. This latter claim
is warranted and not fundamentally flawed.
125. 125. Fred Gifford, “So-Called ‘Clinical Equipoise’ and the Argument from Design,” Journal of Medicine
and Philosophy 32 (2007): 135–50; and Ezekiel Emanuel, W. Bradford Patterson, and Samuel Hellman,
“Ethics of Randomized Clinical Trials,” Journal of Clinical Oncology 16 (1998): 365–71. Some suggest
that the fact that patients with advanced cancer have benefited from novel agents that have minimal
toxicity raises a challenge for ethical randomized clinical trials. However, rather than abandon the clinical
equipoise standard for clinical trials, others argue that “it would be useful to develop new study designs
that prove efficacy rapidly, and consensus criteria that determine threshold values for salutary effects
beyond which a randomized trial is not necessary,” as in Razelle Kurzrock and David J. Stewart,
“Equipoise Abandoned? Randomization and Clinical Trials,” Annals of Oncology 24, no. 10 (October
2013): 2471–74.
126. 126. Don Marquis, “How to Resolve an Ethical Dilemma Concerning Randomized Clinical Trials,” New
England Journal of Medicine 341 (August 26, 1999): 691–93.
127. 127. Jeremy Howick, “Questioning the Methodologic Superiority of ‘Placebo’ over ‘Active’ Controlled
Trials,” American Journal of Bioethics 9 (2009): 34–48. See also articles by his critics in this issue and his
reply in “Reviewing the Unsubstantiated Claims for the Methodological Superiority of ‘Placebo’ over
‘Active’ Controlled Trials: Reply to Open Peer Commentaries,” American Journal of Bioethics 9 (2009):
5–7. See also Benjamin Freedman, Kathleen Glass, and Charles Weijer, “Placebo Orthodoxy in Clinical
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Research II: Ethical, Legal, and Regulatory Myths,” Journal of Law, Medicine & Ethics 24 (1996): 252–
59.
128. 128. Franklin G. Miller, “The Ethics of Placebo-Controlled Trials,” in The Oxford Textbook of Clinical
Research Ethics, ed. Ezekiel Emanuel et al. (New York: Oxford University Press, 2008), pp. 261–72. See
also Robert Temple and Susan S. Ellenberg, “Placebo-Controlled Trials and Active-Control Trials in the
Evaluation of New Treatments. Part 1: Ethical and Scientific Issues,” Annals of Internal Medicine 133
(2000): 455–63; and Ellenberg and Temple, “Placebo-Controlled Trials and Active-Control Trials in the
Evaluation of New Treatments. Part 2: Practical Issues and Specific Cases,” Annals of Internal Medicine
133 (2000): 464–70.
129. 129. See M. A. Fischl et al., “The Efficacy of Azidothymidine (AZT) in the Treatment of Patients with
AIDS-Related Complex: A Double-Blind, Placebo-Controlled Trial,” New England Journal of Medicine
317 (1987): 185–91; and D. D. Richman et al., “The Toxicity of Azidothymidine (AZT) in the Treatment
of Patients with AIDS and AIDS-Related Complex: A Double-Blind, Placebo-Controlled Trial,” New
England Journal of Medicine 317 (1987): 192–97.
130. 130. This summary is drawn from Thomas B. Freeman et al., “Use of Placebo Surgery in Controlled Trials
of a Cellular-Based Therapy for Parkinson’s Disease,” New England Journal of Medicine 341 (September
23, 1999): 988–92.
131. 131. Years later, Scott Y. H. Kim and colleagues conducted semi-structured interviews with a number of
participants from three trials for Parkinson’s disease that used sham surgery as a control arm. They found
that the participants met the standards for informed consent in terms of their understanding of the trial’s
special features, the rationale for this design, their decision to participate, etc. Hence, they concluded that
concerns about informed consent should not be considered “a special ethical barrier to such studies.” See
Kim et al., “Sham Surgery Controls in Parkinson Disease Clinical Trials: Views of Participants,”
Movement Disorders 27, no. 11 (September 15, 2012): 1461–65.
132. 132. For a variety of ethical views, see Freeman et al., “Use of Placebo Surgery in Controlled Trials of a
Cellular-Based Therapy for Parkinson’s Disease”; Ruth Macklin, “The Ethical Problems with Sham
Surgery in Clinical Research,” New England Journal of Medicine 341 (September 23, 1999): 992–96; and
Franklin G. Miller, “Sham Surgery: An Ethical Analysis,” American Journal of Bioethics 3 (2003): 41–48,
with several commentaries (pp. 50–71). Two decades later, similar clinical trials continued, and some
commentators believe that the ethical debate is settled in favor of sham surgery trials for Parkinson’s
disease as long as certain conditions are met, while others stress the “ethical complexities” that remain.
For the former view, see Sophie L. Niemansburg et al., “Reconsidering the Ethics of Sham Interventions
in an Era of Emerging Technologies,” Surgery 157 (2015): 801–10; for the latter view, see Teresa Swift
and Richard Huxtable, “The Ethics of Sham Surgery in Parkinson’s Disease: Back to the Future?”
Bioethics 27, no. 4 (2013): 175–85. One survey indicates that the Parkinson disease clinical research
community will probably not be convinced of the efficacy of future neurosurgical interventions for this
condition unless clinical trials use a sham control. See Scott Y. H. Kim et al., “Science and Ethics of Sham
Surgery: A Survey of Parkinson Disease Clinical Researchers,” Archives of Neurology 62 (September
2005): 1357–60.
133. 133. See Greg Ball, Linda B. Piller, and Michael H. Silverman, “Continuous Safety Monitoring for
Randomized Controlled Clinical Trials with Blinded Treatment Information: Part 1: Ethical
Considerations,” Contemporary Clinical Trials 32, Supplement 1 (September 2011): S2–4.
134. 134. For vigorous calls for the independence and integrity of the DSMB, in light of charges of breaches of
the “wall” between DSMBs and sponsors, see Jeffrey M. Drazen and Alastair J. J. Wood, “Don’t Mess
with the DSMB,” New England Journal of Medicine 363 (July 29, 2010): 477–78; and Catherine D.
DeAngelis and Phil B. Fontanarosa, “Ensuring Integrity in Industry-Sponsored Research: Primum Non
Nocere, Revisited,” JAMA: Journal of the American Medical Association 303 (2010): 1196–98.
135. 135. This is Freedman’s proposal in “Equipoise and the Ethics of Clinical Research.”
136. 136. These conditions and our arguments throughout this section can profitably be compared to the
following influential sources: Council for International Organizations of Medical Sciences, International
Ethical Guidelines for Health-Related Research Involving Humans (Geneva: CIOMS, 2016), available at
http://www.cioms.ch (accessed September 3, 2018); National Bioethics Advisory Commission (NBAC),
Ethical and Policy Issues in International Research: Clinical Trials in Developing Countries, vol. 1
(Bethesda, MD: National Bioethics Advisory Commission, 2001), available at
http://www.cioms.ch/
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https://bioethicsarchive.georgetown.edu/nbac/clinical/Vol1 (accessed September 3, 2018); Nuffield
Council on Bioethics, The Ethics of Research Related to Healthcare in Developing Countries (London:
Nuffield Council, 2008), available at http://nuffieldbioethics.org/wp-content/uploads/2014/07/Ethics-of-
research-related-to-healthcare-in-developing-countries-I (accessed September 2, 2018); US
Department of Health and Human Services, Food and Drug Administration, Title 21, Code of Federal
Regulations, Part 314 (current as of April 1, 2017), available at
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/cfrsearch.cfm (accessed September 2, 2018);
International Conference on Harmonisation; Choice of Control Group and Related Issues in Clinical
Trials, Federal Register 66, no. 93, May 14, 2001, 24390–91.
https://bioethicsarchive.georgetown.edu/nbac/clinical/Vol1
http://nuffieldbioethics.org/wp-content/uploads/2014/07/Ethics-of-research-related-to-healthcare-in-developing-countries-I
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9
Moral Theories
We have mentioned several types of moral theory in earlier chapters without discussing their nature and their
value for biomedical ethics. In this chapter we explicate four influential theories: utilitarianism, Kantianism,
rights theory, and virtue ethics. Knowledge of these theories is indispensable for reflective study in biomedical
ethics because much of the field’s literature presumes familiarity with them. Each theory casts light on important
aspects of moral thinking in the biological sciences, medicine, nursing, and public health.
Many textbook approaches to moral theory explicate several competing theories and then proceed to criticize
them. The criticisms are sometimes so severe that each theory seems fatally wounded, and readers become
skeptical about the value of ethical theory in general. Defects and excesses can be found in all major theories,
but the theories discussed in this chapter all contain insights and arguments that deserve careful and constructive
study. Our goal is to criticize what is questionable or limited in each type of theory and to appropriate what
stands to make a contribution to practical ethics. All four types of theory embody significant insights and
deserve careful study even though none can justifiably claim to be the only defensible theory.
We sometimes refer to our own account of ethics as a theory, but a word of caution is in order about this term.
“Ethical theory” and “moral theory” are commonly used to refer to (1) abstract moral reflection and argument,
(2) systematic presentation of the basic components of ethics, (3) an integrated body of moral norms, and (4) a
systematic justification of basic moral norms. We attempt to construct a coherent body of virtues, rights,
principles, and rules for biomedical ethics. We do not claim to have developed a comprehensive ethical theory in
ways suggested by the combination of (3) and (4). We present an organized system of principles and engage in
systematic reflection and argument; but we present only some elements of a general moral theory.
Each section of the present chapter (except the first and the last) is divided into subsections structured by (1) an
overview of the type of theory under consideration, (2) presentation of how the theory’s proponents might
approach a difficult case in biomedical ethics, (3) examination of criticisms of the theory’s limitations and
problems, and (4) a constructive evaluation of the theory’s contribution to moral reflection. We recognize the
value of various aspects of all four theories discussed in this chapter. We do not, however, hold that the goal of
philosophical ethics is to identify the single best theory and give it moral priority. There is no reason to rank one
of these four types of theory above the others because much can be learned from each.1
CRITERIA FOR ASSESSING MORAL THEORIES
We begin with eight conditions of adequacy for a moral theory. These criteria for theory construction set forth
ideal conditions for theories, but not such demanding conditions that no theory could satisfy them. The extent to
which all available theories only partially satisfy these conditions will not be our concern. Moreover, some
theories may be well suited to some area of the moral life but not to all of it. For example, utilitarianism is often
an excellent model for public policy, and rights theory is often the best model for protecting the interests of
individuals and groups against unjust demands that serve dominant community interests.
Eight conditions provide the basic criteria for assessing ethical theories:2
1. 1. Clarity. Taken as a whole or in its parts, a theory should be as clear as possible. Although, as Aristotle
suggested, we can expect only as much clarity and precision of language as the subject matter allows,
more obscurity and vagueness currently exist in various parts of ethical theory relevant to biomedical
ethics than ideally should be present.
2. 2. Coherence. An ethical theory should be internally coherent. There should be neither conceptual
inconsistencies (e.g., “hard medical paternalism is justified only by consent of the patient”) nor apparently
contradictory statements (e.g., “being virtuous is a moral obligation, but virtuous acts are not obligatory”).
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If an account contains implications that are incoherent with other parts of the account, some aspect of the
theory must be changed in a way that does not produce further incoherence. In Chapter 10 we argue that a
major goal of a theory should be to bring into coherence all of its normative elements (principles, virtues,
rights, considered judgments, and the like).
3. 3. Comprehensiveness. A theory should be as comprehensive as possible. It would be fully comprehensive
if it could account for all justifiable moral norms and judgments. Although the principles presented in this
book under the headings of respect for autonomy, nonmaleficence, beneficence, and justice are far from a
complete system for general normative ethics, they provide a comprehensive general framework for the
domain of biomedical ethics. We do not need additional general principles for this purpose, but we do
specify these four principles to generate rules such as promise-keeping, truthfulness, privacy, and
confidentiality (see Chapter 8). Specified rules stand to increase a theory’s comprehensiveness.
4. 4. Simplicity. A theory that distills the demands of morality to a few basic norms is preferable to a theory
with more norms but no additional and needed content. A theory should have no more norms than are
necessary (simplicity in the sense of theoretical parsimony), and also no more norms than people can use
without confusion (practical simplicity). However, morality is complicated both theoretically and
practically, and a comprehensive moral theory is certain to be complex. If the inherent complexity of
morality demands a theory of morality too difficult for practical use, the theory cannot be faulted for this
reason alone.
5. 5. Explanatory power. A theory has explanatory power when it provides enough insight to help us
understand morality: its purpose, its objective or subjective status, how rights are related to obligations,
and the like. For the sake of clarity, we should distinguish between normative theories and metaethical
theories. A general normative theory should not be held to the task of shedding light on metaethical
questions, but the ideal theory is one that seamlessly constructs a normative system while addressing
relevant metaethical questions.
6. 6. Justificatory power. A theory should provide grounds for justified belief, not merely a reformulation of
beliefs we already possess. For example, the distinction between acts and omissions underlies several
traditional beliefs in biomedical ethics, such as the belief that killing is impermissible and allowing to die
permissible. But a moral theory would be impoverished if it only incorporated this distinction without
determining whether and, if so, when the distinction is justifiable. A good theory also should have the
power to criticize defective beliefs, no matter how widely accepted the beliefs are.
7. 7. Output power. A theory has output power when it produces judgments that were not in the original
database of considered moral judgments on which the theory was constructed. If a normative theory
merely repeats the judgments regarded as sound prior to the construction of the theory, it would have
accomplished nothing. For example, if the parts of a theory pertaining to obligations of beneficence do not
yield new judgments about role obligations of care in medicine beyond those assumed in constructing the
theory, the theory will amount to no more than a classification scheme. A theory, then, must generate more
than a list of axioms present in pretheoretic belief.
8. 8. Practicability. A moral theory is unacceptable if its practical requirements are so demanding that they
cannot be satisfied or could be satisfied by only a few extraordinary persons or communities. A theory that
presents utopian ideals or unfeasible recommendations fails the criterion of practicability. For example, if
a theory proposed such high requirements for personal autonomy (see Chapter 4) or such lofty standards
of social justice (see Chapter 7) that no person could be autonomous or no society just, the proposed
theory would be problematic.
Other criteria of theory construction could be mentioned, but the eight we have identified are the most important
for our purposes. A theory can receive a high score on the basis of one or more of these criteria and a low score
on the basis of other criteria. For example, utilitarianism is arguably an internally coherent, simple, and
comprehensive theory with exceptional output power, but it may not be coherent with some vital considered
judgments, especially with certain judgments about justice, human rights, and the importance of personal
projects. By contrast, Kantian theories are consistent with many of our considered judgments, but their
simplicity and output power may be limited.
UTILITARIAN THEORY
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Consequentialism is a label affixed to theories holding that actions are right or wrong according to the balance of
their good and bad consequences. This term denotes theories that use the promotion of value to determine the
rightness or wrongness of actions.
The most prominent consequentialist theory, utilitarianism, concentrates on the value of well-being, which has
been analyzed in terms of pleasure, happiness, welfare, preference satisfaction, and the like. Utilitarianism
accepts one, and only one, basic principle of ethics: the principle of utility. This principle asserts that we ought
always to produce the maximal balance of positive value over disvalue—or the least possible disvalue, if only
undesirable results can be achieved. This principle is often formulated as a requirement to do the greatest good
for the greatest number, as determined from an impartial perspective that gives equal weight to the legitimate
interests of each affected party. The classical origins of this theory are found in the writings of Jeremy Bentham
(1748–1832) and John Stuart Mill (1806–1873).
The model bequeathed to philosophy by these authors, principally by Mill, renders utilitarian theory
consequentialist, welfarist, aggregative, maximizing, and impartial. It is consequentialist because the moral
rightness and obligatoriness of actions are established by their results, and it is welfarist because the rightness of
actions is determined by good welfare outcomes. It is impersonal and aggregative because a judgment about
right or obligatory action depends on an impartial appraisal that sums up the effects of different possible actions
on the welfare of all affected parties.
The Concept of Utility
Utilitarians share the conviction that we should morally assess human actions in terms of their production of
maximal value, but they often disagree about which values should be maximized. Many utilitarians maintain that
we ought to produce agent-neutral or intrinsic goods, that is, goods such as happiness, freedom, and health that
every rational person values.3 These goods are valuable in themselves, without reference to their further
consequences or to the particular preferences of individuals.
Bentham and Mill are hedonistic utilitarians because they conceive utility in terms of happiness or pleasure, two
broad terms they treat as synonymous.4 They acknowledge that many human actions do not appear to be
performed for the sake of happiness. For example, when highly motivated professionals, such as research
scientists, work themselves to the point of exhaustion in search of new knowledge, they do not appear to be
seeking personal happiness. Mill argues that persons of this description are initially motivated by success,
recognition, or money, which all promise happiness. Along the way, either the pursuit of knowledge provides
happiness or such persons never stop associating their hard work with the success, recognition, or money that
they hope to gain.
Various recent utilitarians, by contrast to Mill, argue that a diverse set of values beyond happiness contribute to
well-being. Examples are beauty, knowledge, health, success, understanding, enjoyment, and deep personal
relationships.5 Even when their lists differ, these utilitarians concur that we should assess the greatest good of an
act in terms of the total intrinsic value it produces. Other utilitarians hold that the concept of utility does not refer
to intrinsic goods but to individuals’ preferences—that is, the maximization of the overall satisfaction of the
preferences of the individuals affected.
A Case of Risk and Truthfulness
Our analysis of each type of ethical theory considers how its proponents might approach the same case. This
case centers on a five-year-old girl who has progressive renal failure and is not responding well on chronic renal
dialysis. The medical staff is considering a renal transplant, but its effectiveness is judged questionable.
Nevertheless, a “clear possibility” exists that a transplanted kidney will not be affected by the disease process.
The parents concur with the plan to try a transplant, but an additional obstacle emerges. The tissue typing
indicates that it would be difficult to find a match for the girl. The staff excludes her two siblings, ages two and
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four, as too young to provide a kidney. The mother is not histocompatible, but the father is compatible and has
“anatomically favorable circulation for transplantation.”
While meeting in private with the father, the nephrologist presents the results and indicates that the prognosis for
his daughter is “quite uncertain.” After reflection, the father decides that he will not donate a kidney to his
daughter. His several reasons include his fear of the surgery and lack of “courage,” the uncertain prognosis for
his daughter even with a transplant, the slight prospect of a cadaver kidney, and the suffering his daughter has
already sustained. The father then requests that the physician tell all members of the family that he is not
histocompatible. He is afraid that if family members know the truth, they will accuse him of failing to save his
daughter when he could do so. He argues that telling the truth would have the effect of wrecking the family. The
physician feels “very uncomfortable” with this request but agrees to tell the man’s wife that the father should not
donate a kidney “for medical reasons.”6
Utilitarians would evaluate this case primarily in terms of the probable consequences of the different courses of
action open to the father and the physician. The goal is to realize the greatest good by balancing the interests of
all affected persons. This evaluation depends on judgments concerning probable outcomes. Whether the father
ought to donate his kidney depends on the probability of successful transplantation as well as the risks and other
costs to him and indirectly to other dependent members of the family. The potential effectiveness of
transplantation is questionable and the prognosis for the daughter uncertain, although a possibility exists that a
transplanted kidney would not undergo the same disease process. There is only a slight possibility that a cadaver
kidney could be obtained.
The girl will probably die without a transplant from either a deceased or a living donor, but the transplant also
offers only a small chance of survival. The risk of death to the father from anesthesia during kidney removal is 1
in 10,000 to 15,000 (at the time this case was published). The chance of success with a transplant is likely
greater than the probability that the father will suffer a significant harm. Under these circumstances a utilitarian
might hold that the father or anyone else similarly situated is obligated to undertake what others might consider
a heroic act that surpasses obligation. Given the balance of probable benefits and risks, an uncompromising
utilitarian might suggest tissue typing the patient’s two siblings and then removing a kidney from one if there
were a good match and parental approval. However, utilitarians frequently disagree among themselves about
which judgment to make in specific cases because of their different theories of value and their different
predictions and assessments of probable outcomes.
Probabilistic judgments would likewise play a role in a physician’s utilitarian calculation of the right action in
response to the father’s request. The physician would take into account a variety of considerations, including
whether full disclosure would wreck the family, whether lying to the family would have serious negative effects,
and whether the father would subsequently experience serious guilt as a result of his refusal to donate.
Utilitarians would argue that the physician is obligated to consider the whole range of facts and possible
consequences in light of the best available information.
Act and Rule Utilitarianism
The principle of utility is the ultimate standard of right and wrong for all utilitarians. The influence of this
principle in bioethics has been deep and abiding.7 Controversy has arisen, however, over whether this principle
justifies particular acts in particular circumstances or instead justifies general rules that determine which acts are
right and wrong. The rule utilitarian holds that particular acts and judgments are morally justified by impartially
formulated rules that maximize value in a society that adopts them, whereas the act utilitarian disregards the
level of rules and justifies actions by appealing directly to the principle of utility, as the following chart
indicates:
Rule Utilitarianism Act Utilitarianism
Principle of Utility Principle of Utility
↑
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Moral Rules ↑
↑
Particular Judgments Particular Judgments
The act utilitarian asks, “Which good and bad consequences will probably result from this action in this
circumstance?” Although moral rules are useful in guiding human actions, they are also expendable if they do
not maximally promote utility in a particular context. For a rule utilitarian, by contrast, an act’s conformity to a
rule that is justified by utility makes the act right, and the rule is not expendable in a particular context even if
following the rule does not maximize utility in that context. Each theory of rule utilitarianism can justify not
only basic moral rules, but also moral rights, professional duties, and the like.8
Physician Worthington Hooker, a prominent nineteenth-century figure in academic medicine and medical ethics,
was an incipient rule utilitarian who attended to rules of truth-telling in medicine as follows:
The good, which may be done by deception in a few cases, is almost as nothing, compared with the
evil which it does in many, when the prospect of its doing good was just as promising as it was in
those in which it succeeded. And when we add to this the evil which would result from a general
adoption of a system of deception, the importance of a strict adherence to the truth in our
intercourse with the sick, even on the ground of expediency, becomes incalculably great.9
Hooker argued that widespread deception and other compromises with truth-telling in medicine will have an
increasingly negative effect over time and will eventually produce more harm than good.
Act utilitarians, by contrast, argue that observing a rule such as truth-telling does not always maximize the
general good, and that such rules are only rough guidelines. They regard rule utilitarians as unfaithful to the
fundamental demand of the principle of utility, which is to “maximize value.”10 From this perspective,
physicians are not obligated to always tell the truth to their patients or their families. For example, sometimes
physicians should lie to instill hope and should appreciate that selective adherence to rules rarely erodes moral
rules or general respect for medical morality.
Because of the benefits to society of the general observance of morally justified rules, the rule utilitarian does
not abandon rules, even in difficult situations. Abandonment threatens the integrity and existence of both the
particular rules and the whole system of rules.11 The act utilitarian’s reply is that although rules such as promise-
keeping usually should be faithfully observed to maintain trust, they may be set aside when doing so would
maximize overall good.12
An Absolute Principle and Its Nonabsolute Rules
From the utilitarian’s perspective, the principle of utility is the sole and absolute principle of ethics, but no rule
derived from this principle is absolute or unrevisable. For example, rules in medicine against actively ending a
patient’s life may be overturned or substantially revised, depending on the consequences of having or not having
the rules. In Chapter 5 we assessed current debates about whether seriously suffering patients should, at their
request, be actively assisted in dying rather than merely allowed to die. The rule utilitarian view is that we
should support rules that permit physicians to hasten death if and only if those rules would produce the most
utility. Likewise, there should be rules against physician-assisted death if and only if those rules would
maximize utility. Utilitarians often point out that many people do not currently support allowing physicians to
actively bring about a patient’s death because of the adverse social consequences they believe would follow for
those directly and indirectly affected. If, however, under a different set of social conditions, legalization of
physician-assisted death would maximize overall social welfare, the utilitarian would not prohibit the practice
and would find good reason to support it. Utilitarians regard their theory as ever responsive in constructive ways
to the need for changes in social practices.
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A Critical Evaluation of Utilitarianism
Utilitarianism is an attractive moral theory for the formation of public and institutional policies. However, it is
not a fully adequate moral theory even for those areas, much less for all areas of the moral life, for the reasons
discussed in this section.
Problems about immoral preferences and actions. Problems arise for utilitarians who are concerned about the
maximization of individual preferences when some of these individuals have what our considered moral
judgments (see Chapter 10, pp. 439–45) tell us are morally unacceptable preferences. For example, if a research
investigator derives great satisfaction from inflicting pain on animals in research or on human subjects in
experiments, we would condemn this preference and would seek to prevent it from being satisfied. A theory
based on subjective preferences is a plausible theory only if we can formulate a range of acceptable preferences
and determine acceptability independently of the particular preferences agents happen to have. This task is
inconsistent with a pure preference approach to utility, because there is no pure utilitarian way to elevate one set
of preferences over another.13
A related problem arises from the utility of immoral actions. Suppose the only way to achieve the maximal
utilitarian outcome is to perform an immoral act such as killing terminally ill persons to distribute their organs to
several others who will die without them. Act utilitarian theory suggests not only that such killing is permissible,
but that it is morally obligatory if the killing would in fact achieve an overall maximization of utility.
Overdemandingness: Does utilitarianism require too much? Some forms of utilitarianism demand too much in
the moral life, because the principle of utility requires maximizing value. Utilitarians therefore have a difficult
time maintaining the distinction between morally obligatory actions and supererogatory actions (see Chapter 2,
pp. 46–48). Alan Donagan presents a variety of situations in which utilitarian theory regards an action as
obligatory even though the action is ideal and praiseworthy rather than obligatory.14 For example, Donagan
would regard the “voluntary” suicide of frail elderly persons who suffer from severe disabilities and are no
longer useful to society as an example of acts that cannot rightly be considered obligatory, regardless of the
consequences. The same holds for gifts of bodily parts, such as kidneys and hearts, to save another person’s life.
If utilitarianism makes such actions obligatory, it is a defective theory.
Bernard Williams and John Mackie offer extensions of this thesis that utilitarianism demands too much.
Williams argues that utilitarianism abrades personal integrity by making persons morally responsible for
consequences that they fail to prevent as much as for those outcomes they directly cause, even when the
consequences are not of their doing. Mackie argues that the utilitarian’s test of right actions is so distant from our
moral experience that it is “the ethics of fantasy,” because it demands that people strip themselves of goals and
relationships they greatly value in order to maximize outcomes for others.15
Problems of unjust distributions. Some utilitarian theories in principle permit the interests of the majority in
society to override the rights of minorities and do not have the resources to adequately guard against unjust
social distributions. The problem is that utilitarians assign no independent weight to rights and justice and their
arguments seem indifferent to unjust distributions because they distribute value according to net aggregate
satisfaction.16 Accordingly, if an already prosperous group of persons could have more value added to their lives
than could be added to the lives of the indigent in society, the utilitarian must recommend that the added value
go to the prosperous group.
An example of problematic, although on balance perhaps justified, distribution appears in the following case.
Two researchers set out to determine the most cost-effective way to control hypertension in the American
population. They discovered that it is more cost-effective to target patients already being treated for hypertension
than to identify new cases of hypertension among persons without regular access to medical care. They
concluded that “a community with limited resources would probably do better to concentrate its efforts on
improving adherence of known hypertensives (that is, those already identified as sufferers of hypertension), even
at a sacrifice in terms of the numbers screened.” No other policy would work as efficiently to maximize social
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utility as targeting known hypertensives already in contact with physicians. However, this recommendation
would exclude the poorest sector of the population with the most pressing need for medical attention from the
benefits of publicly funded high blood pressure education and management.17 (See further our discussion of
cost-effectiveness analysis in Chapter 6, pp. 251–52.)
A Constructive Evaluation of Utilitarianism
Despite these criticisms, utilitarianism has many strengths, two of which we have mentioned in other chapters.
The first is the significant role the principle of utility can play in formulating public and institutional policies.
The utilitarian’s requirements for an objective assessment of everyone’s interests and an impartial choice to
maximize good outcomes for all affected parties are acceptable, indeed, worthy, norms of public policy, except
when they might lead to unjust distributions and the like. Second, in our formulation of principles of beneficence
in Chapter 6 (esp. pp. 217–24), utility plays an important role. In the present chapter we have characterized
utilitarianism as primarily a consequence-based theory, but it is also beneficence based. That is, the theory sees
morality primarily in terms of the legitimate goal of promoting welfare and takes that role with appropriate
seriousness. As argued previously, nonmaleficence and beneficence are among the most basic of moral
principles in biomedical ethics, and utilitarianism is erected at its foundations on these principles.18
KANTIAN THEORY
A second type of theory denies much that utilitarian theories affirm. Often called deontological19 and
nonconsequentialist20 (that is, a theory of duty holding that some features of actions other than or in addition to
consequences make actions right or wrong), this type of theory is now frequently called Kantian, because the
philosophy of Immanuel Kant (1724–1804) has most penetratingly shaped many of its contemporary
formulations.
Consider how a Kantian might approach the previously mentioned case of the five-year-old in need of a kidney.
A Kantian presumably would maintain that we should rest our moral judgments on reasons that apply to all
persons who are similarly situated. If the father has no generalizable moral obligation to his daughter, then no
basis is available for morally criticizing him for not donating a kidney. The strict Kantian maintains that if the
father chooses to donate out of affection, compassion, or concern for his dying daughter, his act would lack
moral worth, because it would not be based on a generalizable obligation; but the donation would have moral
worth if done from the duty (or obligation) of beneficence. Using one of the girl’s younger siblings as a source
of a kidney would be morally prohibited because this recourse to children who are too young to consent to
donation involves using persons merely as means to others’ ends. This principle also precludes coercing the
father to donate against his will.
Regarding the father’s request for the physician to deceive the family, a strict Kantian views lying as an act that
cannot consistently be universalized as a moral norm. The physician should not lie to the man’s wife or to other
members of the family even if it would help keep the family intact (a consequentialist appeal). Although the
physician’s statement that the father should not donate a kidney “for medical reasons” is not, on one
interpretation, a lie, the physician still is intentionally concealing relevant facts from the wife, an act a Kantian
would typically view as morally unacceptable.
A Kantian will also consider whether the rule of confidentiality has independent moral weight, whether the tests
the father underwent with the nephrologist established a relationship of confidentiality, and whether the rule of
confidentiality protects information about the father’s histocompatibility and his reasons for not donating. If
confidentiality prohibits the nephrologist from letting the family know that the father is histocompatible, then the
Kantian must face an apparent conflict of obligations: truthful disclosure in conflict with confidentiality.
We need to have the rudiments of Kantian theory before us in order to address this conflict.
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Obligation Generated by Categorical Rules
In Kant’s theory, morality is grounded in reason, rather than mere tradition, intuition, or attitudes such as
sympathy. Human beings are creatures with rational powers that motivate them morally, that help them resist
tempting desires, and that allow them to prescribe moral rules to themselves. Kant claims that the moral worth of
an individual’s action depends exclusively on the moral acceptability of the “maxim” (i.e., the general rule of
conduct) on which the person is acting. True moral obligation is based on a universally valid rule that determines
the individual’s will and justifies the action.21
For Kant, one must act not only in accordance with, but also for the sake of, the obligation stated in the rule.
That is, to have moral worth, a person’s motive for acting must come from a recognition that he or she intends
that which is morally required. For example, if an employer discloses a health hazard to an employee only
because the employer fears a lawsuit, and not because of the importance of truth-telling, the employer has
performed the right action but deserves no moral credit for performing it. If agents do what is morally right
simply because they are scared, because they derive pleasure from doing that kind of act, or because they seek
recognition, they lack the right kind of motive, which is acting for the sake of obligation.
Kant presents the case of a man who desperately needs money and knows that he will not be able to borrow it
unless he promises repayment in a definite time, but also knows that he will not be able to repay it within this
period. He decides to make a promise that he knows he will break. Kant asks us to examine the man’s reason,
that is, maxim: “When I think myself in want of money, I will borrow money and promise to pay it back,
although I know that I cannot do so.” Kant maintains that this maxim cannot pass a test he calls the categorical
imperative. This imperative tells us what must be done irrespective of our personal desires or goals. In its major
formulation, Kant states the categorical imperative as, “I ought never to act except in such a way that I can also
will that my maxim become a universal law.” Kant says that this general principle justifies all particular
imperatives of obligation (all “ought” statements that morally obligate).22
The categorical imperative is a canon of the acceptability of moral rules, that is, a criterion for judging the
acceptability of the maxims on which we act. This imperative adds nothing to a maxim’s content. It simply
determines which maxims are objective and valid. The categorical imperative functions by testing what Kant
calls the “consistency of maxims”: A maxim must be capable of being conceived and willed without
contradiction. When we examine the maxim of the person who deceitfully promises, we discover, Kant
maintains, that this maxim is incapable of being conceived and willed universally without yielding a
contradiction. It is inconsistent with what it presupposes, as if to say, “My promise can be deceitful, though
promising cannot be deceitful.” The universalized maxim that a deceitful promise is permissible is inconsistent
with the institution of promising it presupposes, and this universalized maxim would be undermined if everyone
acted on it. Lying, too, works only if the person to whom the lie is told expects or presupposes that people are
truthful, but, if universalized, a maxim approving lying would make the purpose of truth-telling impossible, and
no one would believe the person who told a lie.23
Kant has more than one version or formulation of the categorical imperative. His second formulation is widely
cited in biomedical ethics and is far more influential in this field than the first: “One must act to treat every
person as an end and never as a means only.”24 It is often stated that this principle categorically requires that we
should never treat another as a means to our ends, but this interpretation misrepresents Kant’s views. He argues
only that we must not treat another merely or exclusively as a means to our ends. When human research subjects
volunteer to test new drugs, they are treated as a means to others’ ends, but they have a choice in the matter and
retain control over their lives. Kant does not prohibit such uses of consenting persons. He insists only that they
be treated with the respect and moral dignity to which every person is entitled.
Autonomy and Heteronomy
We saw in Chapter 4 that the word autonomy typically refers to what makes judgments and actions one’s own.
Kant’s theory of autonomy is significantly different: Persons have “autonomy of the will” if and only if they
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knowingly act in accordance with the universally valid moral principles that pass the requirements of the
categorical imperative. Kant contrasts this moral autonomy with “heteronomy,” which refers to any
determinative influence over the will other than motivation by valid moral principles.25 If, for example, people
act from passion, desire, personal ambition, or self-interest, they act heteronomously. Only a rational will acting
morally chooses autonomously. Kant regards acting from fear, pity, impulse, personal projects, and habit as
heteronomous, as are actions manipulated or coerced by others.
To say that an individual must accept a moral principle to qualify as autonomous does not mean that the
principle is subjective or that individuals must create (author or originate) their moral principles. Kant requires
only that each individual will the acceptance of valid moral principles. If a person freely accepts objective moral
principles, that person is a moral lawgiver unto himself or herself. In a bold account, Kant extends beyond the
nature of autonomy to its value: “The principle of autonomy” is “the sole principle of morals” and autonomy
gives people respect, value, and proper motivation. A person’s dignity—indeed, “sublimity”—comes from being
morally autonomous.26
Kant’s theory of autonomy is not about respect for the self-determination of agents who make judgments and set
personal goals. It is exclusively about moral self-determination. Nonetheless, Kant’s second formulation of the
categorical imperative is close in important respects to the normative commitments in the principle of respect for
autonomy we developed in Chapter 4.
Contemporary Kantian Ethics
Several writers in ethical theory have accepted and developed influential Kantian moral theories, broadly
construed.
An example is The Theory of Morality by Alan Donagan. He seeks the “philosophical core” of the morality
expressed in the Hebrew-Christian tradition, which he interprets in secular rather than religious terms.
Donagan’s account relies heavily on Kant’s theory of persons as ends in themselves, especially the imperative
that one must treat humanity as an end and never as a means only. Donagan expresses the fundamental principle
of the Hebrew-Christian tradition as a Kantian principle grounded in rationality: “It is impermissible not to
respect every human being, oneself or any other, as a rational creature.”27
A second Kantian theory derives from the work of John Rawls, who challenged utilitarian theories by
developing Kantian themes of reason, autonomy, individual worth, self-respect, and equality.28 His book A
Theory of Justice uses Kant’s moral theory to construct the foundation of a theory of justice (which we treat in
Chapter 7, pp. 274–76). For Rawls, the right to individual autonomy of an agent (as discussed in Chapter 4, pp.
99–106) does not outweigh what rational moral principles demand. Even conscientious acts of individual
autonomy do not merit respect unless they are in accord with moral principles.29
Several philosophers, including Bernard Williams and Thomas Nagel, present views about “deontological
constraints” that are related to Kant’s injunction never to use another person merely as a means.30 They interpret
Kant as correctly maintaining that certain actions are impermissible regardless of the consequences. For
example, in research involving human subjects, even if achieving great breakthroughs would have good
consequences for millions of people, researchers would be treating their subjects unethically if they violated
fundamental ethical constraints such as failing to obtain subjects’ (or their surrogates’) voluntary, informed
consent.
Another influential Kantian, Christine Korsgaard, warns that we stand to misconstrue Kant if we interpret his
moral theory through the lens of such constraints. She argues that when philosophers contrast utilitarian and
Kantian theories, they often miss the fact that these two types of moral theory take strikingly different views
about the subject matter of ethics. Whereas utilitarians take the subject matter to be the outcomes of actions,
Kantians see the subject matter as the quality of relationships, what we owe to others, and the like. Utilitarians
hold that one should be just and beneficent in relationships to others because it maximizes the good, but in
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Kantian theory the norm that one should produce good outcomes derives from norms of proper relationships.
Korsgaard argues that it is a mistake to present Kantian theory as defending deontological constraints as if they
were constraints on the goal of promoting the good. In her interpretation, Kant does not support the claim that
there is a general duty to promote the good that then must be constrained.31
Another Kantian philosopher, Onora O’Neill, has extended Kantian thought into several areas of biomedical
ethics, public health, and global justice. Her themes focus heavily on “principled autonomy,” public reason, a
robust interpretation of universalizability, and the importance of creating conditions of trust.32 O’Neill’s Kantian
views are discussed in Chapter 4 (p. 119).
A Critical Evaluation of Kantian Theory
Like utilitarianism, Kant’s theory and modern reformulations do not provide a fully convincing or adequately
comprehensive theory of the moral life.
The problem of conflicting obligations. Kant construes moral requirements as categorical imperatives, but this
theory is inadequate to handle the problem of conflicting obligations. Suppose we have promised to take our
children on a long-anticipated trip, but now find that if we do so, we cannot assist our sick mother in the
hospital. A rule of promise-keeping in conflict with an obligation of care generates this conflict. Conflict can
also arise from a single moral rule rather than from two different rules, as, for example, when two promises
come into conflict, although the promisor could not have anticipated the conflict when making the promises.
Because moral rules are categorical imperatives in Kant’s theory, he is committed to the view that we are
obligated to perform both actions. Any ethical theory that winds up with this conclusion is unsatisfactory.33
Overemphasizing law while underemphasizing relationships. Kant’s arguments concentrate on obligations from
moral law, and some recent Kantian theories feature a contractual basis for obligations. But whether contract,
moral law, and related staples of Kantianism deserve to occupy this central position in a moral theory is
questionable. These visions of the moral life fail to capture much that is morally important in personal
relationships. For example, we rarely think or act in terms of law, contract, or absolute rules in relationships
among friends and family.34 This feature of the moral life suggests that Kant’s theory (like utilitarianism) is
better suited for relationships among strangers than for relationships among friends or other intimates, including
patients and research subjects.
Virtue, emotion, and moral worth. Kant maintains that actions done from sympathy, emotion, and the like have
no moral worth; only actions performed from duty (i.e., the motive of duty) have moral worth. Kant does not
disallow or even discourage sympathy and moral emotions, but these motives count for nothing morally. Yet, as
we argued in Chapter 2 (pp. 31–33), actions done from sympathy, emotion, and the like do often have moral
worth, at least under some conditions. Persons with appropriate feelings and concern about their friends, for
example, are morally worthier than persons who discharge obligations of friendship entirely from a sense of
duty. Of course, we want people to be attentive to and to discharge their obligations, and there is nothing wrong
with a motive of duty; but motivation from deep care and concern can also be meritorious.35
A Constructive Evaluation of Kantian Theory
Kant argues that when good reasons support a moral judgment, those reasons are good for all relevantly similar
circumstances. Most moral theories now accept roughly this claim, and Kant must be credited for a compelling
and far-reaching theoretical account. For example, if we are required to obtain valid consent from all human
subjects of biomedical research, we cannot make exceptions of certain persons merely because we could
advance science by doing so. We cannot use institutionalized populations without consent any more than we can
use people who are not in institutions without their consent. Kant and many Kantians have discerningly driven
home the point that persons cannot privilege or exempt themselves, their co-workers, or their favored group and
still act morally.
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Kant and contemporary Kantians have worked diligently on perhaps the single most important issue in recent
moral philosophy: Are some actions wrong not because of their good or bad consequences, but because of the
inherent wrongness of either the actions or the rules from which the action is performed? Also, Kant’s second
formulation of the categorical imperative—that persons must be treated as ends and not means only—can be,
and often has been, interpreted as the substantive basis of the principle of respect for autonomy. Among the most
defensible implications of his philosophy is that we have a basic, nonutilitarian obligation to respect the
reasoned choices of others as well as their inherent capacities of reason and choice. Kant’s formulation of this
claim has deeply and justifiably influenced contemporary biomedical ethics.
RIGHTS THEORY
Utilitarian and Kantian theories are committed to the language of moral obligations, but the language of moral
rights is no less important. Since at least the seventeenth century,36 statements and theories of rights have been
considered vital sources of the protection of life, liberty, expression, and property. They protect against
oppression, unequal treatment, intolerance, insecurity, invasion of privacy, and the like. Many philosophers,
political activists, lawyers, and framers of political declarations now regard rights theory as the most important
type of moral theory.
An ethical analysis of the case of the five-year-old in need of a kidney transplant would, from the perspective of
rights theory, focus on the rights of all parties in an effort to determine their meaning and scope as well as their
weight and strength. The father could be considered to have rights of autonomy, privacy, and confidentiality that
protect his bodily integrity and sphere of decision making from interference by others. In addition, he has a right
to information, which he apparently received, about the risks, benefits, and alternatives of living kidney
donation. The father’s decision not to donate is within his rights, as long as it does not violate another’s rights.
No apparent grounds support a general right to assistance that could permit someone, including his daughter, to
demand a kidney based on a moral right. However, there are various rights to assistance, and it could be argued
that the daughter has a right to receive a kidney from her family on the basis of either parental obligations or
medical need. If such a right exists, which is doubtful, it would be circumscribed. For example, it is implausible
to suppose that such a right could be enforced against the interests of the girl’s two young siblings. They are
shielded from conscription of a kidney by their right of noninterference when the procedure is not for their direct
benefit and carries risks.
The father has exercised his rights of autonomy and privacy in allowing the physician to run tests. He then seeks
protection under his right of confidentiality, which he believes allows him to control third-party access to
information generated in his relationship with the physician. However, the precise scope and limits of his rights
and the competing rights of others need to be approached cautiously, as is the case with most presentations of
abstract rights, especially in wide-ranging documents such as the United Nations’ Universal Declaration of
Human Rights.37 For example, in the present case, does the mother herself have a right to the information
generated in the relationship between the father and the nephrologist, particularly information bearing on the fate
of her daughter? Another issue is whether the physician has a right of conscientious refusal. Even if the
physician has a right to protect his personal integrity and to resist becoming an instrument of the father’s desire
to keep others from knowing why he is not donating, does this right trump the father’s right of confidentiality?
Rights as Justified Claims
A right gives its holder a justified claim to something (an entitlement) and a justified claim against another
party. Claiming is a mode of action that appeals to moral norms that allow persons to demand, affirm, or insist
upon what is due to them. “Rights,” then, are justified claims to something that individuals or groups can
legitimately assert against other individuals, groups, or institutions. A right positions an individual or group to
determine by one’s choices what others morally must or must not do.38
The language of rights has served, on numerous occasions, as a means to oppose the status quo, to demand
recognition and respect, and to promote social reforms that aim to secure legal protections for individuals. The
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legitimate role of civil, political, and legal rights in protecting the individual from societal intrusions is
undeniable, but the proposition that individual rights provide the fountainhead for moral and political theory has
been resisted—for example, by many utilitarians and communitarians. They maintain that individual interests
said to be protected by rights are often at odds with communal and institutional interests and also produce
bizarre situations in which two or more rights claims are in direct conflict. In discussions of health care delivery,
for example, proponents of a broad availability and distribution of medical services often appeal to the “right to
health care,” whereas opponents sometimes appeal to the “rights of the medical profession.”
Many participants in moral, political, and legal discussions presuppose that arguments cannot be persuasive
unless stated in the language of rights, a position we find unconvincing. Others find the language of rights
excessively confrontational, adversarial, and unsuitable to address the moral problems that require attention.
Although we also reject this position, we recognize that rights language is not well suited to handle all conflicts,
and that not all claims to have a right have an adequate philosophical or legal basis.
Are Rights Trumps? Absolute and Prima Facie Rights
Rights are neither as strong nor as confrontational as many critics appear to claim. Some rights may be absolute
or close to absolute39 such as the moral right to consent to surgery or to choose one’s religion or to reject all
religion; but, typically, rights are not absolute claims. Like principles of obligation, rights assert only prima facie
claims (in the sense of “prima facie,” or, alternatively, “pro tanto”40 as presented in Chapter 1, pp. 15–16).
Many writers in rights theory seem to dispute this claim. They regularly appeal to Ronald Dworkin’s suggestive
language that critical interests of individuals (chiefly when in conflict with the interests of political states) are
firmly protected by rights that have the force of trump cards.41 This trump metaphor is not well suited for
situations in which one moral right conflicts with another moral right; and when individual rights conflict with
the public interest these rights are not always trumps against the state. If the state needs to protect the rights of
citizens—for example, the state needs to prevent the spread of a catastrophic disease—it may legitimately
override some individual rights such as the right to refuse vaccination or to travel freely.
Dworkin gives a notably narrow account of rights as trumps: “Rights are best understood as trumps over some
background justification for political decisions that states a goal for the community as a whole.”42 A right in this
relatively narrow context is a claim persons can make regarding certain political actions or inactions. A trump
right leaves one in a position to assert that governments cannot override rights for utilitarian or communitarian
reasons, even if the action would maximally promote the public interest. In effect, Dworkin regards rights as
stronger—much stronger—than the moral claims created by community goals and preferences that threaten
these rights, especially as the claims have been developed in utilitarian theories. So understood, rights are
instruments that function to guarantee that individuals cannot be sacrificed to government interests or mere
majority interests, but they are not absolute trumps in any broader respect.
Interpreting rights as trumps is appealing in contexts in which individuals are vulnerable to serious harms and in
which minority populations might be oppressed by majority preferences. The trump metaphor reminds us that
rights powerfully protect individuals from having their interests balanced or traded off and that proposals to
override them in the public interest need the most careful inspection and justification. However, models of rights
based on trumps, absolute shields, and uninfringeable deontological protections can be more misleading than
instructive and can be morally dangerous.
All rights, like all principles and rules of obligation, are prima facie, that is, presumptively valid claims that
sometimes must yield to other claims. In light of this need to balance claims, we should distinguish a violation of
a right from an infringement of a right.43 “Violation” refers to an unjustified and wrong action against an interest
that is protected by a right, whereas “infringement” refers to an action that may or may not legitimately override
a right.
The Rights of Incompetent, Disadvantaged, and Unidentified Members of Populations
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Possession of a right is independent of being in a position to assert the right or to exercise the right. A right-
holder need not be the claimant in a particular case in order to have a justified claim. The fact that persons do not
know that they have a right is no basis for asserting that they do not have it. Infants, the severely mentally
handicapped, and oppressed ethnic and racial minority populations may not know, assert, or be able to claim
their rights, but they still possess them, and claims can be made on their behalf by appropriate representatives.
Likewise, many dependent humans and dependent laboratory animals may have rights whether or not they have
an authorized representative, such as a surrogate, who can exercise the rights.
When problems about the rights of minority populations arise, it is sometimes difficult to tell whether the rights
at stake are rights of individual members of the minority population or of the group itself—a distinction between
group rights and individual rights that we encountered previously in the case of diabetes research on the
Havasupai Indians (in Chapter 5, pp. 200–02).44 In some circumstances obligations exist to protect rights even if
no specific individuals and no specific group can be identified as being vulnerable to violations of their rights.
For example, professionals in veterinary public health have obligations to protect both animals and people
against communicable diseases, even though no specific animal or human is identifiable in many
circumstances.45 These right-holders are unidentified members of populations.
Similarly, it is sometimes difficult to impossible to determine which individuals have obligations to protect the
welfare rights (rights to a decent minimum of well-being) of persons in situations of deprivation; and it is also
difficult to determine which individuals have a right to relief from their circumstance of deprivation. Here
persons lack claim-rights that can have any practical effect. These problems are immense in scope and
profoundly real, especially in the situations of global injustice discussed in Chapter 7 (pp. 297–300). We have
seen that when some party has a right, then someone else has a correlative obligation. But if the person with the
obligation cannot be located by an applicable theory, law, or principle, it is doubtful under that theory, law, or
principle that someone truly has a right.
These problems illustrate the importance of the specification of rights whenever specification can occur, usually
through the offices of an institution with authority and resources.
Positive Rights and Negative Rights
The distinction between positive rights and negative rights has long been central in rights theory, but it achieved
real prominence and salience in moral philosophy and in many nation-states only in the last quarter of the
twentieth century. A major influence on both philosophical theory and politics was Henry Shue’s 1980 book
Basic Rights: Subsistence, Affluence, and U.S. Foreign Policy. Shue distinguishes between rights that protect
individuals’ security and “subsistence rights” such as the right to ample food and the right to adequate shelter.
He argues that subsistence rights (which are positive rights) are as basic as security rights (which are negative
rights). He also argues that no significant difference exists in their moral importance because both are basic
rights.46
Shue’s book is not a work in biomedical ethics, but it nicely illustrates what is at stake in the discussion of
whether positive rights are as important and basic as negative rights in many areas of practical ethics. It also is a
rich source of reflection on the distinction between positive obligations (to provide goods or services) and
negative obligations (to refrain from harming). The value of these distinctions for both applied theory and public
policy cannot be overstated, and, arguably, Shue’s work has also made a major contribution to thinking about the
place of basic rights in any adequate theory of global justice (see Chapter 7, pp. 297–300).
To move now to biomedical ethics, a positive right is a right to receive a particular good or service from others,
for example, a right to health care and a right to public health protective services, whereas a negative right is a
right to be free from some intervention by others, for example, a right of privacy and a right not to be forced to
undergo involuntary institutionalization for psychiatric treatment. A person’s positive right entails another’s
obligation to do something for that person; a negative right entails another’s obligation to refrain from doing
something.47
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Some negative rights such as the right to refuse a recommended medical procedure or involvement in research
are arguably grounded in the principle of respect for autonomy, whereas positive rights such as the right to
health care are arguably grounded in principles of beneficence and justice. Although rights theorists have
historically found it easier to justify negative rights, the modern recognition of welfare or entitlement rights has
expanded the scope of positive rights in many nation-states and these rights are now widely discussed in
analyses of justice in biomedical ethics. However, debates persist about which particular claims of positive and
negative rights are morally justified and also about whether either is a basic human right.
The Correlativity of Rights and Obligations
How are rights related to the moral obligations that were prominently featured in the previous two moral theories
treated in this chapter?
To answer this question, consider the meaning of the abstract statement “X has a right to do or have Y.”
Following from the earlier analysis of the nature of a right as a valid claim, X’s right entails that some party has
an obligation either not to interfere if X does Y or to provide X with Y. In all contexts of rights, a system of
norms imposes an obligation either to act or to refrain from acting so that X can do or have Y. In this way, the
language of rights is translatable into the language of obligations: A right entails an obligation, and an obligation
entails a right. If, for example, a physician agrees to take John Doe as a patient and commences treatment, the
physician incurs an obligation to Doe, and Doe gains a correlative right to treatment. Likewise, if a state has an
obligation to provide goods such as food or health care to needy citizens, any citizen who meets the relevant
criteria of need is entitled to an allotment of the food or health care. Here a strong connection exists between
making demands and using rights to justify the demands. As Shue puts it, a “right provides the rational basis for
a justified demand.”48
The correlativity of obligations and rights is generally accepted in both philosophical ethics and legal theory,
though the precise rights and obligations involved have been difficult to pin down. Here is a brief schema, using
some basic rights and obligations, to illustrate the nature of correlativity:
Obligations Rights
1. Do not kill. 1. The right to not be killed
2. Do not cause pain or suffering to others. 2. The right to not be caused pain or suffering by
others
3. Prevent harm from occurring. 3. The right to have harms prevented from
occurring
4. Rescue persons in danger. 4. The right to be rescued when in danger
5. Tell the truth. 5. The right to be told the truth
6. Nurture the young and dependent. 6. The right to be nurtured when young and
dependent
7. Keep your promises. 7. The right to have promises kept
8. Do not steal. 8. The right to not have one’s property stolen
9. Do not punish the innocent. 9. The right to not be punished when one is
innocent
10. Obey the law. 10. The right to have others obey the law
Is the correlativity thesis flawed? The correlativity thesis has been challenged on grounds that the correlativity
between obligations and rights is untidy49 in that (1) only some obligations entail rights and (2) only some rights
entail obligations.50 We find these two challenges to correlativity unconvincing, but we will discuss only the
first of the two challenges because many critics of the correlativity thesis now concede that all genuine rights (by
contrast to merely proclaimed rights and aspirational rights) do carry correlative obligations. Also, the first
challenge is the only crucial one for the theory that rights follow directly from obligations.
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The objection is that various appropriate uses of the term obligation, as well as the related terms requirement and
duty, show that some obligations do not imply correlative rights. Alleged examples come from the fact that we
refer to obligations of charity, and yet no person can claim another person’s charity as a matter of a right.
Obligations of love and obligations of conscience are also put forward as examples of obligations without
correlative rights.
The problem with these objections and counterexamples is that although it is correct to say that putative norms
of “obligation” such as charity express what we “ought to do” or are “required to do” in some sense, these norms
do not constitute genuine moral obligations. Rather, they obligate individuals who are committed to admirable
moral ideals that exceed moral obligation. They are self-imposed rules of “obligation” that at bottom express
widely admired and endorsed moral ideals rather than obligations imposed by morality. (See the discussion of
moral ideals in Chapter 2, pp. 45–52.) The critical point is that all genuine (by contrast to putative) moral
obligations do have correlative rights and that all genuine moral rights have correlative obligations.51
However, the line at which an action is obligatory rather than ideal is not always clear. Consider a circumstance
in which a fire has broken out in a hospital. A child needs help to escape from a smoke-filled room. A physician
sees the problem and takes the child from the room. The physician is not endangered in doing so and can easily
carry the child to safety. Clearly this physician has a moral obligation to rescue the child—as would any
passerby in the hall. However, if we alter the facts of this situation, it becomes questionable whether this moral
obligation remains. Suppose the walls and floor of the hospital room are ablaze all around the child and collapse
of the room will almost certainly occur at any second. The original obligation of beneficence now turns into a
risky rescue mission that can be described as a moral “requirement” only in the misleading sense previously
mentioned. In this circumstance, the physician has no obligation of rescue and the child has no right of rescue.
As risks increase in circumstances of fires, epidemics, raging rivers, and other exceedingly dangerous
circumstances, it becomes increasingly less likely that a genuine obligation exists, and a rescuer at some point in
the risk index becomes a hero rather than a discharger of an obligation.
Are rights primary? The correlativity thesis does not determine whether rights or obligations, if either, is the
more fundamental or primary category in moral theory. Proposals of a “rights-based” moral theory spring from a
particular conception of the function and justification of morality.52 If the objective of morality is to protect
individuals’ interests (rather than communal interests), and if rights (rather than obligations) are our primary
instruments to this end, then moral action guides are fundamentally rights-based. In this philosophical account,
rights precede and ground obligations.
A theory we encountered in Chapter 7 illustrates this position: Robert Nozick maintains that “individuals have
rights, and there are things no person or group may do to them” without violating their rights.53 He takes the
following rule to be basic in the moral life: All persons have a right to be left free to do as they choose. The
obligation not to interfere with this right follows from the right, rather than the right following from the
obligation. That it follows in this way indicates the priority of a moral right over a rule of moral obligation; the
obligation is entailed by the right.
Alan Gewirth has proposed a rights-based argument that recognizes positive or benefit rights that Nozick does
not accept:
Rights are to obligations as benefits are to burdens. For rights are justified claims to certain benefits,
the support of certain interests of the subject or right-holder. Obligations, on the other hand, are
justified burdens on the part of the respondent or duty-bearer; they restrict his freedom by requiring
that he conduct himself in ways that directly benefit not himself but rather the right-holder. But
burdens are for the sake of benefits, and not vice versa. Hence obligations, which are burdens, are
for the sake of rights, whose objects are benefits. Rights, then, are prior to obligations in the order of
justifying purpose … in that respondents have correlative obligations because subjects have certain
rights.54
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Such rights-based theories accept the correlativity of rights and obligations, but only when joined to a priority
thesis that obligations follow from rights, rather than the converse. Rights form the justificatory basis of
obligations because they best capture the objective of morality, which is to secure liberties or welfare benefits
for a rights-holder.
Although we enthusiastically accept the correlativity thesis, we do not accept a priority thesis that renders rights,
obligations, or virtues primary because we see no basis on which to sustain this philosophical conclusion.
The specification of rights. James Griffin rightly points out that we are sometimes satisfied that a basic right
exists and that there are correlative obligations, yet we are uncertain precisely what the term “human rights”
means and what a basic right gives us a right to.55 Basic rights are abstract moral notions that do not fix how to
formulate specific policies or resolve practical moral problems. We agree and also agree with Dworkin’s
assessment that “abstract rights … provide arguments for concrete rights, but the claim of a concrete right is
more definitive [in political contexts] than any claim of abstract right that supports it.”56
These problems should be handled through what we describe in several chapters as specification: the process of
reducing the indeterminate character of abstract norms and giving them specific action-guiding content.
Specifying rights to make them practical guidelines is just as important as specifying obligations.
A Critical Evaluation of Rights Theory
Problems in various rights theories will now be addressed.
Problems about the scope of morality. Pure rights-based accounts that aspire to be comprehensive moral theories
run the risk of truncating our understanding of the richness of morality, because rights cannot account for the
moral significance of motives, supererogatory actions, virtues, and the like. A moral theory premised exclusively
on rights would fare poorly under the criteria of comprehensiveness and explanatory and justificatory power
proposed at the beginning of this chapter. Accordingly, it is undesirable to limit the foundations of morality or
moral theory to a rights-based model.
Problems about whether to exercise rights. Often a moral problem turns not on whether someone has a right, but
on whether rights-holders should or should not exercise their rights. If a person says, “I know you have the right
to do X, but you should not do it,” this moral claim goes beyond a statement of a right. One’s obligation or one’s
character, not one’s right, is in question. This problem shows why rights theory needs to be buttressed by
theories of obligation and virtue.
The neglect of communal goods. Rights theorists sometimes write as if social morality’s major concern is to
protect individual rights against governmental or other forms of communal intrusion. This vision is too limited
for an ethical theory, however it may fare as a political theory. It excludes not only group interests but also
communal values, such as public health, biomedical research, and the protection of animals used in research.
The better perspective is that social ideals, principles of obligation, and communal interests are as central to
morality as rights, and that none is dispensable.
A Constructive Evaluation of Rights Theory
We have offered a sympathetic interpretation of the use of rights language to express critically important, and
universally valid, moral norms. We have also offered a defense of both the correlativity of rights and obligations
and the moral and social purposes served by a theory of basic rights. No part of our moral vocabulary does more
to protect the legitimate interests of citizens in political states than the language of rights. Predictably, injustice
and inhumane treatment occur most frequently in political states that fail to recognize human rights in their
rhetoric, documents, and actions. As much as any part of moral discourse, human rights language crosses
national boundaries and enters into international law and statements by international agencies and associations.
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Being a rights-bearer in a society that enforces rights is both a source of personal protection and a source of
dignity and self-respect. By contrast, to maintain that someone has an obligation to protect another’s interest
may leave the beneficiary in a passive position, dependent on the other’s goodwill in fulfilling the obligation.
When persons possess enforceable rights correlative to obligations, they are enabled to be independent agents,
pursuing their projects and making legitimate claims.
We value rights because, when enforced, they provide protections against unscrupulous behavior, promote
orderly change and cohesiveness in communities, and allow diverse communities to coexist peacefully within a
single political state.57 A weighty reason for giving prominence to rights in moral and political theory is that in
contexts of moral practice, such as health care institutions, rights demand a robust form of respect and better
shield individuals against unjust or unwarranted communal intrusion, control, or neglect than does any other
moral and legal category.
VIRTUE THEORY
In Chapter 2, we defended a theory of moral character that is delineated in terms of moral virtues. We now return
to this domain to examine virtue theory as a major type of moral theory.
Virtue theory is independent of utilitarian, Kantian, and rights theories. Whatever their differences, utilitarians
and deontologists similarly conceive of moral philosophy and the demands of morality: Ethics begins with the
question, “What morally ought we to do?” and then provides general rules of obligation as guides to action. In
classical Greek philosophy of the virtues, represented by Aristotle’s powerful account, the cultivation of virtuous
traits of character is conceived as one of morality’s primary functions; and in the commanding eighteenth-
century virtue theory of David Hume, even moral judgments of human actions are at bottom judgments of
whether certain motives and character traits are virtuous or vicious.
Some defenders of virtue ethics deny that it is a theory at all, preferring to use terms such as account or
perspective that can highlight virtue ethics’ wide-ranging and all-embracing features. Others argue that placing
virtue ethics together with the three theories thus far examined in this chapter loses sight of its radical critique of
the other three approaches (and of contemporary culture).58 Nevertheless, we regard virtue ethics as an
alternative type of theory even if it does not address exactly the same questions as utilitarian, Kantian, or rights
theories.59
We begin by considering how a proponent of virtue ethics might approach the case of the father who is reluctant
to donate a kidney to his dying daughter and requests that the physician deceive his family about his reasons.
The father’s confessed lack of courage to donate one of his kidneys is relevant to an evaluation of him and his
refusal to donate, but he had other reasons as well, some possibly involving self-deception. He points to his
daughter’s “degree of suffering,” which suggests that he believes she might be better off without a transplant.
Hence, his motives may be partially other-directed, not purely self-centered, and may involve compassion for his
ill daughter. We could also investigate whether the father was compassionate and caring about her welfare and
whether his apparent failure of courage may have overwhelmed his compassion, faithfulness, and other virtues,
if they were present at all.
Several other judgments of character are relevant in assessing this case. We lack a full description of his wife,
but the father was apparently worried that she would be unforgiving in accusing him of “allowing his daughter to
die.” This belief underlies his request that the physician tell a lie. In responding to the father’s request, the
physician focused on how the act of deception might compromise his integrity, and he “felt very uncomfortable”
about the request. This feeling suggests an ongoing concern not to compromise his truthfulness and moral
integrity. The physician presumably thought he could avoid a serious compromise of both truthfulness, in the
sense of not directly lying, and integrity by saying that “for medical reasons” the father should not donate a
kidney. However, questions arise about whether the physician acted on an unstable distinction between a direct
lie (for instance, “he cannot donate because he is not histocompatible”) and a deliberately misleading statement
(for example, he should not donate “for medical reasons”).
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In the remainder of this section, we will first consider the critical distinction between right action and virtuous
action, and then turn to the special status of virtues. We will later consider how moral virtues are related to the
sorts of action guides presented in the previous three theories in this chapter.
Right Action and Proper Motive
Aristotle drew an important distinction between right action and proper motive, which he analyzed in terms of
the distinction between external performance and internal state. An action can be right without being virtuous,
he maintained, but an action can be virtuous only if performed in the right state of mind. Both right action and
right motive are present in a truly virtuous action: “The agent must … be in the right state when he does [the
actions]. First, he must know [that he is performing virtuous actions]; second, he must decide on them, and
decide on them for themselves; and third, he must also do them from a firm and unchanging state,” including the
right state of emotion and desire. “The just and temperate person is not the one who [merely] does these actions,
but the one who also does them in the way in which just or temperate people do them.”60
Aristotle has it right. In addition to being properly motivated, a virtuous person experiences appropriate feelings,
such as sympathy and regret, even when the feelings are not motives and no action results from the feelings.
Virtuous persons also do not act from mere inclination or for personal advantage. They act under a conception of
what is morally right and worthy. However, not all virtues have a transparent link to motives, feelings, or a
conception of good and worthy reasons. Moral discernment and moral integrity, two virtues treated in Chapter 2,
are examples. In these two virtues, psychological properties other than feelings are paramount, and they involve
morally good states of mind in addition to having a conception of what is right and worthy.61
The terms virtue and vice are today less common in our everyday moral vocabulary than obligation, human
rights, and the like, but the virtues have figured prominently in the history of both ethical theory and medical
ethics. Appeals to virtue are intuitive and sensible: We commend and deeply respect persons who are honest,
fair, respectful, just, or caring, or have various other admirable qualities. Likewise, we condemn and disrespect
persons who are dishonest, malevolent, uncaring, unjust, or dishonorable, or have other vices. A comprehensive
catalogue of the virtues and the vices, as proposed in some classic moral theories and religious traditions, is a
large project, because there are dozens of vices and virtues.62 Some are merely proclaimed virtues that are
controversial, but many have been accepted in the common morality and by the major moral theorists who have
developed accounts of virtue and vice.
The Definition of “Virtue”
The definition of “virtue” was briefly addressed in Chapter 2, where we stated that “A virtue is a dispositional
trait of character that is socially valuable and reliably present in a person, and a moral virtue is a dispositional
trait of character that is morally valuable and reliably present.” This definition builds on, but moves beyond, a
prominent definition of virtue offered by Hume, who wrote, “It is the nature, and, indeed, the definition of
virtue, that it is a quality of the mind agreeable to or approved of by every one, who considers or contemplates
it.”63 So understood, a virtue is a fusion of two components: (1) an objective mental quality in a person (a
feeling, motive, or character trait), and (2) a general approval of this mental quality by all impartial persons who
contemplate it. “General approval” here means social approval of a type of mental trait such as benevolence,
friendliness, gratitude, honesty, compassion, and public spiritedness. In Hume’s theory, impartial moral judges
(hence “every one” in his definition) are the sources of approval. A mental quality is a moral virtue if and only if
it evokes the universal moral approval of impartial persons; and a mental quality is a vice if and only if the
quality evokes universal condemnation in impartial persons. All morally decent persons have the capacity to see
certain mental traits as estimable, agreeable, and amiable—to use Hume’s terms.
Hume’s definition provides the skeletal beginnings of an adequate analysis of “virtue.” To generalize now
beyond Hume’s and Aristotle’s immensely influential theories, a virtue is a deeply entrenched, morally good and
socially commended trait of character that makes persons morally reliable, whereas a vice is the converse. We do
not always think of virtue theory in terms of character traits, because parts of our vocabulary include “virtuous
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action” and “virtuous person.” Nonetheless, a moral virtue is itself a character trait. These traits dispose persons
to perform right actions, but virtue theory proposes that we not start with right actions as if the virtues were
derivative from judgments of action. The idea is to construct a moral theory from character traits that enable and
dispose a person to identify and perform right actions.64
The Special Status of the Virtues
Some who write about virtue and character see the language of obligation as derivative from the language of
virtue. They regard a person disposed by character to have good motives and desires as the model of the morally
good person. This model determines our expectations of persons, which are then expressed in terms of their
obligations.65 They regard the virtue model as morally more basic and important than a model of action
performed from obligation, because right motives and character tell us more about the moral worth of a person
than do right actions goaded by obligation.
We are often more concerned about the character and motives of persons than about whether their acts conform
to rules. When friends perform acts of “friendship,” we expect the acts not to be motivated entirely from a sense
of obligation to us, but to be motivated by a desire to be friendly accompanied by a sense of valuing our
friendship. The friend who acts only from obligation lacks the virtue of friendliness, and in the absence of this
virtue, the relationship lacks the moral quality of friendship.66 Similar points hold for parents who play with
their small children only because of a felt obligation.
Virtue theorists argue that the attempt in obligation-oriented theories to replace the virtuous judgments of health
care professionals with rules, codes, and procedures—as has recently occurred in many professional codes—will
not produce better decisions and actions.67 For example, rather than relying on institutional rules and
government regulations to protect human research subjects, the most reliable protection is the presence of an
“informed, conscientious, compassionate, responsible researcher.”68 If so, character is more important and
consequential than conformity to rules, and a premium should be placed on inculcating and cultivating the
virtues through educational interactions and guidance by role models. Persons who are respectful, benevolent,
and just are those who reliably perform right actions.
In his chronicle of life under the Nazi SS in the Jewish ghetto in Cracow, Poland, Thomas Keneally describes a
physician faced with a moral dilemma: either inject cyanide into four immobile patients or abandon them to the
SS, who were at that moment emptying the ghetto and had already demonstrated that they would torture and kill
captives and patients. This physician, Keneally observes, “suffered painfully from a set of ethics as intimate to
him as the organs of his own body.”69 Here is a person of the highest moral character and virtue, motivated to
act rightly and even heroically, despite having no idea about the morally right action in this dilemmatic
circumstance (given the lack of guidance found in traditional rules of medical ethics). Ultimately, with
uncertainty and reluctance, the physician elected euthanasia, using forty drops of hydrocyanic acid, without the
consent or knowledge of the four doomed patients—an act almost universally denounced by the canons of
professional medical ethics. Even if one thinks that the physician’s actions of killing were wrong and
blameworthy—a judgment we would not defend—no reasonable person would make a judgment of blame or
demerit directed at the physician’s motives or character. Having already risked death by choosing to remain at
his patients’ beds in the hospital rather than take an available escape route, this physician is a moral hero who
displayed an extraordinary moral character.
Action Guidance Based on Moral Virtues
What do virtuous moral agents do? Some virtue theorists maintain that virtues enable persons to discern what
they should do and be motivated to do it in particular circumstances without need for preexisting rules.
According to Rosalind Hursthouse:
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Virtue ethics provides a specification of “right actions”—as “what a virtuous agent would,
characteristically, do in the circumstances”—and such a specification can be regarded as generating
a number of moral rules or principles (contrary to the usual claim that virtue ethics does not come
up with rules or principles). Each virtue generates an instruction—“Do what is honest,” “Do what is
charitable,” and each vice a prohibition—“Do not … do what is dishonest, uncharitable.”70
In this theory, what is right to do is what a virtuous agent would do, and the virtuous agent reliably does what
conforms to a “virtue-rule.” When moral conflicts and moral dilemmas of the sort explored in Chapter 1 emerge,
they can be handled through additional specifications. Virtue ethics therefore resembles other normative ethical
theories in seeking to identify the morally relevant features of a situation that justify doing action X rather than
action Y.
Many proponents of virtue ethics do not lament that their approach lacks a clear and precise decision procedure
for conflicts and dilemmas. They maintain that theories based on principles, rules, and rights have no advantage
over virtue theory in resolving moral dilemmas; and they claim that, in irresolvable and tragic dilemmas, the
virtues help direct agents to appropriate responses, including appropriate attitudes and emotions such as moral
distress.71
Specification of the actual “instruction” or “virtue-rule” will often not be as straightforward as Hursthouse’s
examples may suggest (e.g., consider the virtue of moral integrity), and there is no reason to think that all
specifications will rely exclusively on underlying notions of virtue. For example, rules of informed consent may
rely on values of autonomy beyond the virtue of respectfulness for autonomy. Specification in virtue ethics is
likely to be similar in its commitments to the theory of moral norms and specification that we proposed in
Chapter 1. Virtue theory, from this perspective, does not prove that virtues have advantages over principles and
rules of obligation as guides to action.
The moral life is a constant process of acquiring skills and making judgments. Over time a person gains
increased understanding and becomes more skilled in specifying general guidelines, becoming morally virtuous,
and sticking to one’s moral ideals. In the case of virtues and moral ideals, one learns better how to be truthful,
honest, discreet, friendly, charitable, and polite by bringing those virtues to bear in a variety of situations. This
way of learning involves the acquisition of skills roughly analogous to the process of learning how to use a
language.72
The correspondence of moral virtues and moral obligations. There is a rough, although imperfect,
correspondence between some virtues and moral principles, rules, and ideals. This relationship is less uniform
and more complicated than the correlativity of rights and obligations discussed in the previous section of this
chapter. The following (noncomprehensive) list illustrates the correspondence between a few select virtues and
norms that are prominent in our account of the common morality.
Principles Virtues
Respect for autonomy Respectfulness for autonomy
Nonmaleficence Nonmalevolence
Beneficence Benevolence
Justice Justice
Rules Virtues
Veracity Truthfulness
Confidentiality Respectfulness for confidentiality
Privacy Respectfulness for privacy
Fidelity Faithfulness
Ideals of Action Ideals of Virtue
Exceptional forgiveness Exceptional forgivingness
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Exceptional generosity Exceptional generousness
Exceptional compassion Exceptional compassionateness
Exceptional kindness Exceptional kindliness
This list could be expanded to include an extensive array of additional norms and virtues, but no table can be
constructed that presents a perfect, comprehensive schema of correspondence and noncorrespondence.
Moreover, many virtues do not have a direct, one-to-one correspondence to a principle. For example, caring,
concern, compassion, sympathy, courage, modesty, and patience are virtues that do not correspond well to
principles and rules of obligation. Other examples are cautiousness, integrity, cheerfulness, unpretentiousness,
sincerity, appreciativeness, cooperativeness, and commitment.73 Some virtues that lack corresponding norms of
obligation nonetheless have corresponding moral ideals, as the above list indicates. And all are important for
morality as a whole.
A Critical Evaluation of Virtue Theory
Several problems merit consideration in assessing virtue theory.
How independent and comprehensive is virtue theory? Various virtues seem to be character traits compatible
with the performance of morally wrong actions. For example, courage, wisdom, and loyalty can enable unethical
activities. As discussed in Chapter 8, the virtues of loyalty, friendship, and solidarity can foster inadequate
reporting by physicians of unethical or incompetent behavior by other physicians. In speaking of generally
admirable character traits as moral virtues, virtue theory cannot merely list good, commendable, and useful
mental traits.
In the tradition descending from Aristotle, a moral virtue is exclusively a moral excellence of a person. But is
moral excellence or moral worthiness determined exclusively by virtue standards? The notion of a morally
worthy pursuit is not analyzable entirely in terms of a virtue theory because it will often rely on nonvirtue
premises regarding what constitutes a morally good life and morally good conduct, which in turn may require
reference to action guides and the basic objectives of morality.
When strangers meet. Virtue and character are likely to be prized and emphasized in many human relationships
where a climate of trust prevails. Principles or rules that express the obligations of health professionals in codes
of conduct and statements of patients’ rights may, in these intimate contexts, be intrusions rather than essential
elements. However, virtue theory works less well for certain forms of moral encounter, especially where trust,
intimacy, familiarity, and the like have not been established. When strangers meet, character often plays a less
significant role than principles, rules, and institutional policies. For example, when a patient first encounters a
physician, the physician’s conformity to rules may be essential in situations of obtaining consent, disclosing a
conflict of interest, proposing “do not resuscitate” orders for incompetent patients, explaining surrogate mother
arrangements, and so on. Likewise, physicians may welcome explicit and mutually agreed-upon rules of
informed consent, advance directives, codes of ethics, and similar structures and arrangements. Here rights,
rules, and guidelines are welcome and are entirely acceptable parts of the moral landscape.
A Constructive Evaluation of Virtue Theory
Virtues come to the fore in contexts in which trust, intimacy, and dependence are present. Virtue theory is
particularly well suited to help us navigate circumstances of caregiving and the delivery of information in health
care. For example, “consenting a patient” (a common but problematic expression)74 by merely conforming to
institutional rules of informed consent is generally far less important than having a caring and discerning
physician, nurse, or other health professional who appreciates the importance of dialogue, reassurance, and
honesty in the process of obtaining an informed consent.
Virtue theory is the most venerable type of moral theory, with a grand tradition descending from the ancient to
the modern world. Throughout the history of moral theory, leading writers on the virtues have agreed on most of
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the moral virtues and on the importance of virtue theory. Aristotle’s emphasis on excellences of character and
David Hume’s emphasis on virtues as the basis of personal moral merit are jewels in the history of virtue theory
and moral philosophy. Though 2,000 years separated them, their philosophies display a considerable agreement
about the central virtues as well as about the centrality of virtue theory in moral philosophy. These theories
deserve a status and recognition no less prominent than Mill’s utilitarian views of social beneficence, Kant’s
deontological views about the categorical demands of respect for all persons, and the views of celebrated writers
in the history of rights theory.
THE CONVERGENCE OF THEORIES ON PRINCIPLES
When competing theories, systems, or general depictions of some phenomenon are available, we usually seek
out the best account. However, affiliation with a single type of ethical theory is precarious, especially in
biomedical ethics. If the two authors of this book were forced to rank the types of theory examined in this
chapter, we would differ. Nevertheless, for both of us, the most satisfactory type of theory—if we could find one
to be most satisfactory—would be only slightly preferable, and no theory would fully satisfy all of the criteria
for assessing theories presented in the first section of this chapter.
Differences among types of theory should not be exaggerated because these theories are not analogous to
warring armies locked in combat. Many and perhaps most moral theories lead to the acceptance of the same
general action guides that we have presented in several chapters as elements in the common morality. This thesis
may work less well for act-based theories (notably for act utilitarianism), but it generally holds for theories
committed to principles, rules, rights, and virtues. These different theories often defend roughly the same
principles, obligations, rights, responsibilities, virtues, and the like. For example, rule utilitarianism may appear
to be starkly different from, and even hostile to, nonconsequentialist theories, but rule-utilitarian Richard Brandt
rightly notes that his theory is similar, at the level of principle and obligation, to W. D. Ross’s nonutilitarian
theory (discussed in Chapter 1):
[The best code] would contain rules giving directions for recurrent situations which involve
conflicts of human interests. Presumably, then, it would contain rules rather similar to W. D. Ross’s
list of prima facie obligations: rules about the keeping of promises and contracts, rules about debts
of gratitude such as we may owe to our parents, and, of course, rules about not injuring other
persons and about promoting the welfare of others where this does not work a comparable hardship
on us.75
That Brandt appeals to utility and Ross to deontological considerations to justify similar sets of rules is a
significant difference at the level of moral theory and justification. Brandt and Ross also might interpret, specify,
and balance their rules differently as a result of their theoretical commitments, but their lists of primary
obligations display no major differences. Their convergence on general principles is not unusual in moral theory.
Agreement derives from an initial shared database, namely, the norms of the common morality. The proponents
of the different types of theory examined in this chapter all accept the principles of common morality before they
devise their theory—as we believe is also true of Aristotle, Locke, Hume, Kant, Mill, and other giants in the
history of moral philosophy we have mentioned. This claim does not ignore the important differences that may
appear in their interpretation and weighting of those principles.
Convergence on a basic set of norms is also common in assessing cases and framing policies, even if theoretical
differences divide the discussants. As bioethics commissions and committees have long appreciated, in making
practical judgments and creating public policies, we need only agreement on a set of basic action-guides—not an
agreement on either their theoretical foundations or where they should and should not be applied. Nonetheless,
convergence to agreement on general norms should not be confused with questions about whether a theory
adequately justifies its principles. Theoretical inquiry is worthwhile even if practical agreement and serious
moral progress in biomedical ethics can often be achieved without resolving deep theoretical differences.
CONCLUSION
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Competition exists among the four types of normative theory explored in this chapter, and conflicting
conceptions continue regarding what these theories imply for biomedical practice. However, each of these
theories is instructive and makes a contribution to our thinking about the moral life. We have maintained that no
reason exists to consider one type of theory inferior to or derivative from another, and there is good reason to
believe that these types of theory all show considerable insight into our common moral heritage and how it can
be mined to help us develop contemporary biomedical ethics.
Every general theory risks clashing at some point with considered moral convictions, but each of the four
theories examined in this chapter articulates a point of view that we should be reluctant to relinquish. This
approach to theories allows us to focus on their remarkable insights without being forced to choose one theory to
the exclusion of the others or to judge one theory as primary at the foundations of ethics.
NOTES
1. 1. Our views on pluralism are influenced by Thomas Nagel, “The Fragmentation of Value,” in Mortal
Questions (Cambridge: Cambridge University Press, 1979), pp. 128–37; and Baruch Brody’s treatment in
Life and Death Decision Making (New York: Oxford University Press, 1988), especially p. 9.
2. 2. Our presentation has profited from Shelly Kagan, The Limits of Morality (Oxford: Clarendon Press,
1989), esp. pp. 11–15, and from criticisms of our views privately presented by David DeGrazia and Avi
Craimer.
3. 3. For analysis of this utilitarian thesis, see Samuel Scheffler, Consequentialism and Its Critics (Oxford:
Clarendon Press, 1988).
4. 4. Jeremy Bentham, An Introduction to the Principles of Morals and Legislation, ed. J. H. Burns and H. L.
A. Hart (Oxford: Clarendon Press, 1970), pp. 11–14, 31, 34; and John Stuart Mill, Utilitarianism, in vol.
10 of the Collected Works of John Stuart Mill (Toronto: University of Toronto Press, 1969), chap. 1, p.
207; chap. 2, pp. 210, 214; chap. 4, pp. 234–35.
5. 5. See a representative theory in James Griffin, Well-Being: Its Meaning, Measurement and Moral
Importance (Oxford: Clarendon, 1986), especially p. 67. The most influential early twentieth-century
theory of this sort was G. E. Moore, Principia Ethica; see the revised edition, ed. Thomas Baldwin
(Cambridge: Cambridge University Press, 1993).
6. 6. This case is based on Melvin D. Levine, Lee Scott, and William J. Curran, “Ethics Rounds in a
Children’s Medical Center: Evaluation of a Hospital-Based Program for Continuing Education in Medical
Ethics,” Pediatrics 60 (August 1977): 205.
7. 7. Influential utilitarian works in bioethics include Peter Singer, Practical Ethics, 2nd ed. (Cambridge:
Cambridge University Press, 1993); R. M. Hare, Moral Thinking: Its Levels, Method, and Point (Oxford:
Oxford University Press, 1981); Hare, Essays on Bioethics (Oxford: Oxford University Press, 1993); Hare,
“A Utilitarian Approach to Ethics,” in A Companion to Bioethics, ed. Helga Kuhse and Peter Singer, 2nd
ed. (Oxford: Wiley-Blackwell, 2009), pp. 85–90; and Brad Hooker, Ideal Code, Real World: A Rule-
Consequentialist Theory of Morality (Oxford: Oxford University Press, 2002). John Harris’s influential
work tends in a consequentialist and utilitarian direction; see Harris, The Value of Life: An Introduction to
Medical Ethics (New York: Routledge, 1985), among other publications. Jonathan Baron, under the
influence of Hare (among others) and decision theory, argues for a utilitarian approach to bioethics and
against principlism. See Baron, Against Bioethics (Cambridge, MA: MIT Press, 2006).
8. 8. Cf. L. W. Sumner, The Moral Foundation of Rights (Oxford: Clarendon Press, 1987); and Hooker, Ideal
Code, Real World.
9. 9. Worthington Hooker, Physician and Patient (New York: Baker & Scribner, 1849), pp. 357ff, 375–81.
10. 10. J. J. C. Smart, An Outline of a System of Utilitarian Ethics (Melbourne: Melbourne University Press,
1961); and Smart, “Extreme and Restricted Utilitarianism,” in Contemporary Utilitarianism, ed. Michael
D. Bayles (Garden City, NY: Doubleday, 1968), esp. pp. 104–7, 113–15.
11. 11. Richard B. Brandt, “Toward a Credible Form of Utilitarianism,” in Contemporary Utilitarianism, ed.
Bayles, pp. 143–86; and Brandt’s Morality, Utilitarianism, and Rights (Cambridge: Cambridge University
Press, 1992). For a rule-utilitarian alternative to Brandt’s rule-utilitarian formulations, see Hooker, Ideal
World, Real World.
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12. 12. For wide-reaching analyses of utilitarianism, including critical assessments, see Tim Mulgan,
Understanding Utilitarianism (Abingdon, UK: Routledge, 2014); and Walter Sinnott-Armstrong,
“Consequentialism,” The Stanford Encyclopedia of Philosophy (Winter 2015 Edition), ed. Edward N.
Zalta, available at https://plato.stanford.edu/archives/win2015/entries/consequentialism/ (accessed April 8,
2018).
13. 13. This question is discussed in Madison Powers, “Repugnant Desires and the Two-Tier Conception of
Utility,” Utilitas 6 (1994): 171–76.
14. 14. Alan Donagan, “Is There a Credible Form of Utilitarianism?” in Contemporary Utilitarianism, ed.
Bayles, pp. 187–202. See also the attempt to develop a consequentialist theory that reduces or eliminates
the “demandingness” problem in Tim Mulgan, The Demands of Consequentialism (Oxford: Clarendon
Press, 2005), which offers a “moderately demanding” theory of mixed consequentialism.
15. 15. Williams, “A Critique of Utilitarianism,” in Utilitarianism: For and Against, ed. J. J. C. Smart and
Bernard Williams (Cambridge: Cambridge University Press, 1973), pp. 116–17; and J. L. Mackie, Ethics:
Inventing Right and Wrong (New York: Penguin, 1977), pp. 129, 133. For an extension, see Edward
Harcourt, “Integrity, Practical Deliberation and Utilitarianism,” Philosophical Quarterly 48 (1998): 189–
98.
16. 16. For a defense of utilitarianism (set against egalitarianism) in forming just policies toward people with
disabilities, see Mark S. Stein, Distributive Justice and Disability: Utilitarianism against Egalitarianism
(New Haven, CT: Yale University Press, 2006).
17. 17. Milton C. Weinstein and William B. Stason, Hypertension (Cambridge, MA: Harvard University
Press, 1977); “Public Health Rounds at the Harvard School of Public Health: Allocation of Resources to
Manage Hypertension,” New England Journal of Medicine 296 (1977): 732–39; and “Allocating
Resources: The Case of Hypertension,” Hastings Center Report 7 (October 1977): 24–29.
18. 18. We agree with Amartya Sen that “consequentialist reasoning may be fruitfully used even when
consequentialism as such is not accepted. To ignore consequences is to leave an ethical story half told.”
On Ethics and Economics (Oxford: Basil Blackwell, 1987), p. 75.
19. 19. See Stephen Darwall, ed., Deontology (Oxford: Blackwell, 2003), for a representative collection of
works; and Larry Alexander and Michael Moore, “Deontological Ethics,” The Stanford Encyclopedia of
Philosophy (Winter 2016 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/win2016/entries/ethics-deontological/ (accessed April 8, 2018).
20. 20. See, for example, the writings of F. M. Kamm, especially Intricate Ethics: Rights, Responsibilities,
and Permissible Harm (New York: Oxford University Press, 2007). Rather than taking a specifically
Kantian approach, she indicates that contemporary nonconsequentialism has “its spiritual roots in the
work of Immanuel Kant and W. D. Ross” (p. 10). Her rigorous writings often focus on issues in or
important for bioethics, as in her Bioethical Prescriptions: To Create, End, Choose, and Improve Lives
(New York: Oxford University Press, 2013). Some nonconsequentialists or deontologists operate from
Jewish, Christian, Islamic, or other religious perspectives, which we do not examine in this book.
21. 21. Kant sought to show that what we should do morally is determined by what we would do “if reason
completely determined the will.” The Critique of Practical Reason, trans. Lewis White Beck (New York:
Macmillan, 1985), pp. 18–19; Ak. 20. “Ak.” designates the page-reference system of the twenty-two-
volume Preussische Akademie edition conventionally cited in Kant scholarship.
22. 22. Kant, Foundations of the Metaphysics of Morals, trans. Lewis White Beck (Indianapolis, IN: Bobbs-
Merrill, 1959), pp. 37–42; Ak. 421–24.
23. 23. For interpretations of Kant’s idea of contradiction in maxims, see Christine Korsgaard, “Kant’s
Formula of Universal Law,” Pacific Philosophical Quarterly 66 (1985): 24–47, and “Kant’s Formula of
Humanity,” Kant-Studien 77 (1986): 183–202, both reprinted with other essays in her Creating the
Kingdom of Ends (Cambridge: Cambridge University Press, 1996); and Barbara Herman, The Practice of
Moral Judgment (Cambridge, MA: Harvard University Press, 1993), pp. 132–58.
24. 24. Kant, Foundations, p. 47; Ak. 429.
25. 25. Kant, Foundations, pp. 51, 58–63; Ak. 432, 439–44.
26. 26. Kant, Foundations, p. 58; Ak. 439–40.
27. 27. Alan Donagan, The Theory of Morality (Chicago: University of Chicago Press, 1977), pp. 63–66.
28. 28. See A Theory of Justice (Cambridge, MA: Harvard University Press, 1971; rev. ed., 1999), pp. 3–4,
27–31 (1999: pp. 3–4, 24–28). For an approach to Kant influenced by Rawls, see Thomas Hill, Jr., Human
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Welfare and Moral Worth: Kantian Perspectives (Oxford: Clarendon, 2002).
29. 29. Rawls, A Theory of Justice, pp. 252, 256, 515–20 (1999 ed.: pp. 221–22, 226–27, 452–56). See also
his “A Kantian Conception of Equality,” Cambridge Review (February 1975): 97ff.
30. 30. See, for example, Thomas Nagel, “Personal Rights and Public Space,” Philosophy & Public Affairs 24
(1995): 83–107, and his The View from Nowhere (New York: Oxford University Press, 1986); Bernard
Williams, Ethics and the Limits of Philosophy (Cambridge, MA: Harvard University Press, 1985), and his
Moral Luck: Philosophical Papers, 1973–1980 (Cambridge: Cambridge University Press, 1981).
31. 31. Christine M. Korsgaard, “Interacting with Animals: A Kantian Account,” in Oxford Handbook of
Animal Ethics, ed. Tom L. Beauchamp and R. G. Frey (New York: Oxford University Press, 2011), p. 97.
32. 32. Onora O’Neill, Towards Justice and Virtue: A Constructive Account of Practical Reasoning
(Cambridge: Cambridge University Press, 1996), pp. 5–6; and Constructions of Reason: Explorations of
Kant’s Practical Philosophy (Cambridge: Cambridge University Press, 1989). Her Kantian work in
bioethics includes Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002), and,
with Neil C. Manson, Rethinking Informed Consent in Bioethics (Cambridge: Cambridge University Press,
2007).
33. 33. For innovative interpretations that respond to this objection by giving more flexibility to Kant, see
Herman, The Practice of Moral Judgment, pp. 132–58; Nancy Sherman, Making a Necessity of Virtue
(Cambridge: Cambridge University Press, 1997); and Tamar Schapiro, “Kantian Rigorism and Mitigating
Circumstances,” Ethics 117 (2006): 32–57. These writings respond to forms of the third objection we
mention in this section, especially regarding the place of virtue in Kant’s theory.
34. 34. Cf. Annette Baier, “The Need for More than Justice,” in her Moral Prejudices (Cambridge, MA:
Harvard University Press, 1994).
35. 35. We are indebted to the analysis in Karen Stohr, “Virtue Ethics and Kant’s Cold-Hearted Benefactor,”
Journal of Value Inquiry 36 (2002): 187–204.
36. 36. Pioneering theories of international rights and natural rights—now often restyled as human rights—
first prospered in philosophy through the social and political theories of Hugo Grotius, Thomas Hobbes,
John Locke, and their near successors, which were often contractarian theories. On the history of human
rights, see Anthony Pagden, “Human Rights, Natural Rights, and Europe’s Imperial Legacy,” Political
Theory 31 (2003): 171–99; the wide-ranging historical, anthropological, and philosophical theory in Ian
Shapiro, The Evolution of Rights in Liberal Theory (Cambridge: Cambridge University Press, as reissued
in 2008); and James Nickel, “Human Rights,” The Stanford Encyclopedia of Philosophy (Spring 2017
Edition), ed. Edward N. Zalta, available at https://plato.stanford.edu/archives/spr2017/entries/rights-
human (accessed April 10, 2018). For an exploration of human rights in relation to global bioethical
issues, see Wanda Teays, John-Stewart Gordon, and Alison Dundes Renteln, eds., Global Bioethics and
Human Rights: Contemporary Issues (Lanham, MD: Rowman & Littlefield, 2014). For an account of
human rights closely connected to theories of justice and sometimes to bioethics, see Madison Powers and
Ruth R. Faden, Structural Injustice: Power, Advantage, and Human Rights (New York: Oxford University
Press, 2019). For a critique of appeals to human rights in bioethics, see two articles by John D. Arras and
Elizabeth M. Fenton: “Bioethics and Human Rights: Access to Health-Related Goods,” Hastings Center
Report 39 (2009): 27–38; and “Bioethics and Human Rights: Curb Your Enthusiasm,” Cambridge
Quarterly of Healthcare Ethics 19 (2010): 127–33.
37. 37. United Nations, Universal Declaration of Human Rights, 2015 online edition, available at
http://www.un.org/en/udhrbook/pdf/udhr_booklet_en_web.pd (accessed July 29, 2018).
38. 38. Our representations on this point are indebted to the theory of rights in Joel Feinberg’s Rights, Justice,
and the Bounds of Liberty (Princeton, NJ: Princeton University Press, 1980), esp. pp. 139–41, 143–55,
159–60, 187; and Feinberg, Social Philosophy (Englewood Cliffs, NJ: Prentice-Hall, 1973), chaps. 4–6.
See also Alan Gewirth, The Community of Rights (Chicago: University of Chicago Press, 1996), pp. 8–9;
H. L. A. Hart, “Bentham on Legal Rights,” in Oxford Essays in Jurisprudence, 2nd series, ed. A. W. B.
Simpson (Oxford: Oxford University Press, 1973), pp. 171–98; and Christian Reus-Smit, “On Rights and
Institutions,” in Global Basic Rights, ed. Charles Beitz and Robert E. Goodin (New York: Oxford
University Press, 2009), esp. pp. 27–29.
39. 39. A clever and atypical attempt to defend an absolute right is Alan Gewirth, “Are There Any Absolute
Rights?” Philosophical Quarterly 31 (1981): 1–16; reprinted in Gewirth’s Human Rights (Chicago:
University of Chicago Press, 1982), Chapter 9.
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40. 40. On the distinction between absolute and prima facie rights, see Danny Frederick, “Pro-Tanto versus
Absolute Rights,” Philosophical Forum 45 (2014): 375–94.
41. 41. Ronald Dworkin, Taking Rights Seriously (Cambridge, MA: Harvard University Press, 1977), pp. xi,
xv, 92 (and, as reissued with an “Appendix: A Reply to Critics,” in 2002, pp. 364–66); and Law’s Empire
(Cambridge, MA: Harvard University Press, 1986), p. 160.
42. 42. Ronald Dworkin, “Rights as Trumps,” in Theories of Rights, ed. Jeremy Waldron (Oxford: Oxford
University Press, 1984), pp. 153–67; the quote is on p. 153 (italics added).
43. 43. See Judith Jarvis Thomson, The Realm of Rights (Cambridge, MA: Harvard University Press, 1990),
pp. 122–24, and also 106–17, 149–53, 164–75; and Feinberg, Rights, Justice, and the Bounds of Liberty,
pp. 229–32.
44. 44. On problems of minority rights, see James Nickel, Making Sense of Human Rights, 2nd ed. (Malden,
MA: Blackwell, 2007), chap. 10. For the case for group rights, see James Griffin, On Human Rights
(Oxford: Oxford University Press, 2008), chap. 15.
45. 45. World Health Organization, “Zoonoses: Managing Public Health Risks at the Human-Animal-
Environment Interface,” available at http://www.who.int/zoonoses/en/ (accessed April 10, 2018).
46. 46. Shue’s first edition was published in 1980, and a second edition in 1996 (Princeton, NJ: Princeton
University Press). The second is used here. The first edition was highly influential in several disciplines.
The nature and importance of Shue’s work is carefully explored by several authors in Global Basic Rights,
ed. Beitz and Goodin.
47. 47. See Feinberg, Social Philosophy, p. 59; Eric Mack, ed., Positive and Negative Duties (New Orleans,
LA: Tulane University Press, 1985); and Judith Lichtenberg, “Are There Any Basic Rights,” in Global
Basic Rights, ed. Beitz and Goodin, esp. pp. 81–91.
48. 48. Shue, Basic Rights, p. 13.
49. 49. See David Braybrooke, “The Firm but Untidy Correlativity of Rights and Obligations,” Canadian
Journal of Philosophy 1 (1972): 351–63; Feinberg, Rights, Justice, and the Bounds of Liberty, pp. 135–39,
143–44; Feinberg, Harm to Others, vol. 1 of The Moral Limits of the Criminal Law (New York: Oxford
University Press, 1984), pp. 148–49; Griffin, On Human Rights, pp. 51, 96, 107–9; and Joseph Raz, The
Morality of Freedom (New York: Oxford University Press, 1986), pp. 170–72. Probing discussions of
correlativity are found in Gewirth’s The Community of Rights. See also Feinberg’s insightful explanation
of the confusions that enter moral discourse owing to the ambiguity of the words duty, obligation, and
requirement, in his Doing and Deserving: Essays in the Theory of Responsibility (Princeton, NJ: Princeton
University Press, 1970), pp. 3–8.
50. 50. See some objections presented by David Lyons, “The Correlativity of Rights and Duties,” Nous 4
(1970): 45–55; Theodore M. Benditt, Rights (Totowa, NJ: Rowman & Littlefield, 1982), pp. 6–7, 23–25,
77; Alan R. White, Rights (Oxford: Clarendon Press, 1984), pp. 60–66; and Richard Brandt, Ethical
Theory (Englewood Cliffs, NJ: Prentice Hall, 1959), pp. 439–40.
51. 51. This difference is sometimes marked by saying that perfect obligations have correlative rights,
whereas imperfect obligations do not. We prefer the tidier approach that only perfect obligations are
genuinely moral obligations. So-called imperfect obligations are moral ideals that allow for discretion. Cf.
Feinberg, Rights, Justice, and the Bounds of Liberty, pp. 138–39, 143–44, 148–49. For an interesting
argument for a right to be loved, see S. Matthew Liao, The Right to Be Loved (New York: Oxford
University Press, 2015).
52. 52. Ronald Dworkin argues that political morality is rights-based in Taking Rights Seriously, pp. 169–77,
esp. p. 171. J. L. Mackie’s theory develops a similar thesis applied to morality in general in “Can There Be
a Right-Based Moral Theory?” Midwest Studies in Philosophy 3 (1978), esp. p. 350.
53. 53. Robert Nozick, Anarchy, State, and Utopia (New York: Basic Books, 1974), pp. ix, 149–82.
54. 54. Alan Gewirth, “Why Rights Are Indispensable,” Mind 95 (1986): 329–44, quote from p. 333. See
Gewirth’s later book, The Community of Rights (Chicago: University of Chicago Press, 1996).
55. 55. James Griffin, On Human Rights (Oxford: Oxford University Press, 2008), pp. 14–19, 97, 110. Griffin
maintains that “the term ‘human right’ is nearly ‘criterionless’” (p. 14). See, for a different view, Joseph
Raz, The Morality of Freedom (Oxford: Clarendon Press, 1986), chap. 7.1.
56. 56. Ronald Dworkin, Taking Rights Seriously, pp. 93–94.
57. 57. See William R. Lund, “Politics, Virtue, and the Right to Do Wrong: Assessing the Communitarian
Critique of Rights,” Journal of Social Philosophy 28 (1997): 101–22; Allen Buchanan, “Assessing the
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Communitarian Critique of Liberalism,” Ethics 99 (July 1989): 852–82, esp. 862–65; and William A.
Galston, Liberal Purposes (Cambridge: Cambridge University Press, 1991).
58. 58. See Talbot Brewer, The Retrieval of Ethics (Oxford: Oxford University Press, 2009), pp. 1–11, passim.
59. 59. For an introduction, see Heather Battaly, Virtue (Cambridge: Polity Press, 2015). Several volumes
provide a range of illuminating views: see, for example, Lorraine Besser-Jones and Michael Slote, eds.,
The Routledge Companion to Virtue Ethics (London: Routledge, 2015); and Daniel C. Russell, ed., The
Cambridge Companion to Virtue Ethics (Cambridge: Cambridge University Press, 2013).
60. 60. Aristotle, Nicomachean Ethics, trans. Terence Irwin (Indianapolis, IN: Hackett, 1985), 1105a17–33,
1106b21–23; cf. also 1144a14–20.
61. 61. Robert Adams distinguishes “motivational virtues” (such as benevolence) from “structural virtues”
(such as courage and self-control). The latter are structural features of the agent’s organization and
management of his or her motives. A Theory of Virtue: Excellence in Being for the Good (Oxford:
Clarendon Press, 2006), pp. 33–34, passim.
62. 62. Categorization has centuries of tradition behind it in ethical theory. Although there are variations in the
proposed lists of virtues (and vices), much is also held in common across these traditions—enough to
speak of a common morality of the virtues. See David Hume’s comments on the catalogue of the virtues in
his An Enquiry concerning the Principles of Morals, ed. Tom L. Beauchamp (Oxford: Clarendon Press,
1998), beginning at 1.10 (sect. 1, par. 10); see also 6.21, 9.3, 9.12. Although Hume was influenced by
Aristotle, he reported that he was most deeply influenced by the catalogue of virtues in Cicero’s De
officiis. For a description of positive character traits interpreted as virtues, see Christopher Peterson and
Martin E. P. Seligman, eds., Character Strengths and Virtues: A Handbook and Classification
(Washington, DC: American Psychological Association; and New York: Oxford University Press, 2004).
Their chapters identify twenty-four specific character strengths under six broad virtues.
63. 63. Hume, An Enquiry concerning the Principles of Morals, sect. 8, footnote to the section title; and
appendix 1, par. 10.
64. 64. For further analysis of the nature and definition of virtue, see Julia Annas, Intelligent Virtue (New
York: Oxford University Press, 2011), esp. chaps. 2–5.
65. 65. See Philippa Foot, Virtues and Vices (Oxford: Basil Blackwell, 1978); Gregory Trianosky,
“Supererogation, Wrongdoing, and Vice,” Journal of Philosophy 83 (1986): 26–40; Jorge L. Garcia, “The
Primacy of the Virtuous,” Philosophia 20 (1990): 69–91; and criticisms of this perspective in Lynn A.
Jansen, “The Virtues in Their Place: Virtue Ethics in Medicine,” Theoretical Medicine 21 (2000): 261–76.
66. 66. See Diane Jeske, “Friendship, Virtue, and Impartiality,” Philosophy and Phenomenological Research
57 (1997): 51–72; and Michael Stocker, “The Schizophrenia of Modern Ethical Theories,” Journal of
Philosophy 73 (1976): 453–66. On the history and central role of friendship in virtue theory dating from
Aristotle, see Bennett Helm, “Friendship,” The Stanford Encyclopedia of Philosophy (Fall 2017 Edition),
ed. Edward N. Zalta, available at https://plato.stanford.edu/archives/fall2017/entries/friendship/ (accessed
April 4, 2018); and Sandra Lynch, Philosophy and Friendship (Edinburgh: Edinburgh University Press,
2005).
67. 67. Cf. Gregory Pence, Ethical Options in Medicine (Oradell, NJ: Medical Economics, 1980), p. 177.
68. 68. The quotation is from Henry K. Beecher, “Ethics and Clinical Research,” New England Journal of
Medicine 274 (1966): 1354–60. On the interpretation of Beecher as a proponent of a virtue account in the
literature of medical ethics, see the brief statement in Mark Israel, Research Ethics and Integrity for Social
Scientists: Beyond Regulatory Compliance, 2nd ed. (Los Angeles: Sage, 2015), p. 15.
69. 69. Thomas Keneally, Schindler’s List (New York: Penguin Books, 1983), pp. 176–80.
70. 70. Rosalind Hursthouse, On Virtue Ethics (Oxford: Oxford University Press, 2001), p. 17. Other
proponents of virtue ethics also stress that and how the virtues can guide action. See, for example, Julia
Annas, “Why Virtue Ethics Does Not Have a Problem with Right Action,” Oxford Studies in Normative
Ethics 4 (2014): 13–33, and Annas, “Learning Virtue Rules: The Issue of Thick Concepts,” in Developing
the Virtues: Integrating Perspectives, ed. Annas, Darcia Narvaez, and Nancy E. Snow (New York: Oxford
University Press, 2016), pp. 224–34. For an analysis of major positions in virtue ethics on this matter, see
Liezl van Zyl, “Virtue Ethics and Right Action,” in The Cambridge Companion to Virtue Ethics, ed.
Russell, pp. 171–96.
71. 71. See Rosalind Hursthouse, “Virtue Ethics and the Treatment of Animals,” in Oxford Handbook of
Animal Ethics, ed. Beauchamp and Frey (2011), pp. 126–27; and Hursthouse, “Virtue Ethics,” in The
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Stanford Encyclopedia of Philosophy (Winter 2016 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/entries/ethics-virtue/ (accessed April 11, 2018). See also Christine Swanton,
Virtue Ethics: A Pluralistic View (New York: Oxford University Press, 2003), part 4; and Rebecca L.
Walker and Philip J. Ivanhoe, eds., Working Virtue: Virtue Ethics and Contemporary Moral Problems
(New York: Oxford University Press, 2009).
72. 72. See related reflections on the virtues, to which we are indebted, in Annas, Intelligent Virtue, chap. 3,
esp. pp. 32–40.
73. 73. For a notably different analysis of “the link between virtues, principles, and duties” in biomedical
ethics, see Edmund Pellegrino and David Thomasma, The Virtues in Medical Practice (New York: Oxford
University Press, 1993), chap. 2. See also Pellegrino, “Professing Medicine, Virtue Based Ethics, and the
Retrieval of Professionalism,” in Working Virtue, ed. Walker and Ivanhoe, pp. 61–85. Other examinations
of virtue ethics specifically in the context of health care include Rebecca L. Walker’s “Virtue Ethics and
Medicine,” in The Routledge Companion to Virtue Ethics, ed. Besser-Jones and Slote, pp. 515–28; Justin
Oakley, “Virtue Ethics and Bioethics,” in The Cambridge Companion to Virtue Ethics, ed. Russell, pp.
197–220; Alan E. Armstrong, Nursing Ethics: A Virtue-based Approach (Houndmills, UK: Palgrave
Macmillan, 2007); and literature discussed and cited in Chapter 2 of this volume.
74. 74. While widespread, the language of “consenting a patient” or “consenting a research subject” is
objectionable because only the patient or subject can consent—health professionals and investigators do
not “consent” patients or subjects; they provide the opportunity for and enable patients’ and subjects’
consent, for example, by providing relevant information. See our discussion of informed consent in
Chapter 4, pp. 188–23.
75. 75. Brandt, “Toward a Credible Form of Utilitarianism,” p. 166.
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10
Method and Moral Justification
Can we justify moral conclusions in biomedical ethics? If we can, which methods can we legitimately and
effectively use? The literature of the field offers numerous answers to these questions. In this chapter we step
back from the first-order problems of normative and biomedical ethics that have largely preoccupied us to this
point and reflect on second-order problems of method and justification. We assess the leading methods and
forms of justification and defend an account that descends from John Rawls’s justly celebrated theory of
reflective equilibrium.
The first three sections of this chapter explicate and evaluate three models of method and justification. We then
assess the arguments of critics of our methods and framework of principles. Finally, we connect our account of
method and justification to the theory of common morality introduced in Chapter 1, the account of moral
character developed in Chapter 2, and the analysis of moral status in Chapter 3.
JUSTIFICATION IN ETHICS
Justification has several meanings, some specific to disciplines. In law, justification is a demonstration in court
that one has legally sufficient reasons and evidence for one’s claim or for what one has been called to answer. In
ethical discourse, the objective is to establish one’s case by presenting morally sufficient reasons for it. A mere
listing of reasons will not suffice because those reasons may not adequately support the conclusion that needs to
be justified. Not all reasons are good reasons, and not all good reasons are sufficient for justification. We need to
distinguish a reason’s relevance to a moral judgment from its sufficiency to support that judgment and also to
distinguish an attempted justification from a successful justification. For example, chemical companies in the
United States at one time argued that the presence of toxic chemicals in a work environment provides a legally
and morally sound reason to exclude women of childbearing age from a hazardous workplace, but the US
Supreme Court overturned these policies on grounds that they discriminate against women.1 The dangers to
health and life presented by hazardous chemicals constitute a good reason for protecting employees from a
workplace, but this reason is not a sufficient reason for a ban that impacts only women.
Several models of method and justification operate in normative ethical theory and contemporary biomedical
ethics. We will analyze three models. The first approaches justification and method from a top-down perspective
that emphasizes moral norms, as discussed in Chapter 1, and ethical theory, as discussed in Chapter 9. The
second model approaches justification and method from a bottom-up perspective that emphasizes precedent
cases, moral traditions, experience, and particular circumstances. The third does not assign priority to either a
top-down or a bottom-up strategy. It emphasizes considered moral judgments and the overall coherence of facts,
moral norms, and moral beliefs in a general moral framework. We defend a version of the third.
TOP-DOWN MODELS: THEORY AND APPLICATION
A top-down model holds that we reach justified moral judgments through a structure of general normative
precepts that support the judgments. This model is inspired by disciplines such as mathematics, in which a claim
follows logically (deductively) from a credible set of premises. Justification occurs if and only if general
principles or rules, together with the relevant facts of a situation, support an inference to a justified judgment.
This model conforms to the way many people have been raised to think morally: It involves applying a general
norm (principle, rule, ideal, right, etc.) to a clear case falling under the norm. The deductive form is sometimes
considered an application of general precepts to particular cases, a conception that has encouraged use of the
term applied ethics, a term we challenged but also used in Chapter 1.
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The following is the deductive form involved in “applying” a norm (here using what is obligatory, rather than
what is permitted or prohibited, although the deductive model can be fashioned for all three):
1. 1. Every act of description A is obligatory.
2. 2. Act b is of description A.
Therefore,
1. 3. Act b is obligatory.
A simple example is this:
1. 1x. Every act in a patient’s overall best interest is obligatory for the patient’s doctor.
2. 2x. Act of resuscitation b is in this patient’s overall best interest.
Therefore,
1. 3x. Act of resuscitation b is obligatory for this patient’s doctor.
Covering precepts, such as 1 and 1x, occur at various levels of generality, but they are always universal in their
logical form. The level of generality varies according to the specificity of the description A, while the
statement’s universal form is ensured by the claim that every act of such a description is obligatory. Particular
judgments or beliefs are justified by bringing them under the scope of one or more moral rules; and the rules
may be justified by bringing them under general principles, which in turn might be justified by appeal to a
normative ethical theory. Consider a nurse who refuses to assist in an abortion procedure. The nurse might
attempt to justify the act of refusal by the rule that it is wrong to kill a human being intentionally. If pressed, the
nurse may justify this moral rule by reference to a principle of the sanctity of human life. Finally, the particular
judgment, rule, and principle might all find support in an ethical theory of the sort discussed in Chapter 9 and in
a theory of moral status of the sort discussed in Chapter 3.
This model functions smoothly in the straightforward case of a judgment brought directly and unambiguously
under a rule or a principle—for example, “You must tell Mr. Sanford that he has cancer and will probably die
soon, because a clinician must observe rules of truthfulness in order to properly respect the autonomy of
patients.” The top-down model proposes that the judgment, “You should not lie to Mr. Sanford,” descends in
moral content directly from the covering principle, “You should respect the autonomy of patients,” from which
we derive the covering rule, “You should not lie to patients.”
Problems in the Model
This model suggests an ordering in which general theories, principles, rules, and rights enjoy moral priority over
traditional practices, institutional rules, and case judgments. Although much in the moral life conforms roughly
to this covering-norm conception, much does not. Particular moral judgments in difficult cases almost always
require that we specify and balance norms (as discussed in Chapter 1), not merely that we bring a particular
instance under a preexisting covering rule or principle. The abstract rules and principles in moral theories are
extensively indeterminate. That is, the content of these rules and principles is too abstract in many situations to
determine the specific acts that we should and should not perform. In the process of specifying and balancing
norms and in making particular judgments, we often must take into account facts, cultural expectations,
anticipated outcomes, and precedents to help assign relative weights to rules, principles, and theories.
The moral life often requires much more than general and specified norms. No general or specified norm
(principle or rule) may clearly apply in a situation. The facts of cases are usually complex, and the different
moral norms that can be brought to bear on the facts may yield inconclusive, or even contradictory, results. For
example, in the controversy over whether it is permissible to destroy a human embryo in a petri dish for
purposes of scientific research, embryo destruction does not clearly violate rules against killing or murder, nor
does the rule that a person has a right to protect his or her bodily integrity and property clearly apply to the
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destruction of extracorporeal human embryos. Even if all relevant facts are available, our selection of pertinent
facts and pertinent rules may generate a judgment that is incompatible with another person’s selection of facts
and rules. Selecting the correct set of facts and bringing the right set of rules to bear on these facts is not
reducible to a straightforward process of deduction.
The top-down model also creates a potentially infinite regress of justification—a never-ending demand for final
justification—because each level of appeal to a covering precept requires a higher level to justify that precept. In
theory, this problem could be handled by presenting a principle that is self-justifying or irrational not to hold, but
proving that some principles occupy this status and that they justify all other principles or rules is an arduous
demand that current ethical theory cannot meet. If all standards are unjustified until brought under a justified
covering precept, it would appear, on the assumptions of this approach, that there are no justified principles or
judgments.
A Theory of “Morality as a Public System”
One important version of top-down theory, and the most thoroughly examined in biomedical ethics (though it is
not a pure deductivism), is the theory of Bernard Gert, as developed in bioethics with coauthors Danner Clouser
and Charles Culver. Gert refers to his basic ethical theory as a theory of “morality as a public system.” The
public moral system is the institution of morality at work in our daily lives—that is, lived, pretheoretical
morality—whereas a moral theory that describes and defends the norms of morality is a philosophical account.
This theory can be thought of as top-down in the sense that the major elements of the theory are general moral
rules, moral ideals, the morally relevant features of situations, and procedures for dealing with conflicts and
assessing whether certain violations of moral rules are justified. Morality is envisaged in this theory as a public
system of norms that are applicable to all persons in all places and times.2
When challenges arose to our framework of principles in the 1980s, the challengers who were grounded in
Gert’s moral theory emerged as our most unsparing critics in several articles and parts of books that expressed
grave concerns about our prima facie principles. They coined the label “principlism” to refer to any account of
ethics comprising a plurality of potentially conflicting prima facie principles. In our view, Gert and colleagues
are not as distant from the views we defend in this book as they suppose. Like us, they understand the common
morality as universal morality that is not relative to cultures, individuals, religions, or professional associations.
However, Gert and colleagues reject both the language and the substance of our account of principles, while
putting forward their account of impartial rules, moral ideals, and the definition of morality as a superior,
alternative framework in biomedical ethics. We concentrate in the present section more on their criticisms of our
principles and methods than on the nature and limits of top-down theories in general.3
First, Gert and colleagues charge that principles function as little more than names, checklists, or headings for
values morally worth remembering while lacking deep moral substance and capacity to guide action. That is,
principles do little more than point to moral themes that merit consideration by grouping those themes under
broad headings of important moral notions. A second criticism is that because moral agents confronted with
bioethical problems receive no specific, directive guidance from abstract principles, they are left free to deal
with the problems in their own way, virtually as they wish. They may give a principle whatever interpretation
and weight they wish, or even no weight at all. From this perspective, our account is insubstantial and
permissive, largely because it lacks a controlling, comprehensive, tight theory. A third criticism is that the prima
facie principles and other action guides in our framework often conflict, and our account is too indeterminate to
provide a decision procedure to adjudicate the conflicts.
Clouser and Gert find these deficiencies especially obvious in the idea of principles of justice, as we examine
accounts of justice in Chapter 7. They maintain that no specific guide to action derives from these principles and
that all of the principles of justice we mention merely instruct persons to attend to matters of justice and think
about justice, but they give no specific normative guidance about how to pursue the demands of justice. Because
vagueness and generality underdetermine solutions to problems of justice, agents are free to decide what is just
and unjust as they see fit.
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Gert and Clouser also criticize our theory for giving status to beneficence as a principle of obligation. In a
striking part of their theory, they maintain that there are no moral obligations of beneficence, although they hold
that moral ideals of beneficence are vital parts of morality and should be encouraged. In their system, the only
obligations in the moral life, apart from duties encountered in professional roles and specific stations of duty, are
captured by moral rules that prohibit causing harm or evil—that is, rules of nonmaleficence. For Gert and
colleagues, the general goal of morality is to minimize evil or harm, not to promote good. Rational persons can
act impartially at all times in regard to all persons with the aim of not causing evil, but rational persons cannot
impartially promote the good for all persons at all times.4 This account ranks nonmaleficence as far more
important than beneficence in the core dimensions of morality—a thesis we have rejected in previous chapters
on grounds that the common morality accepts both of these as principles of obligation and does not prioritize
either over the other.
The Limitations of “Morality as a Public System”
We agree that the problems Gert, Clouser, and Culver raise deserve sustained reflection, but we reject the key
criticisms they direct at our account, some of which can be turned back on their theory. In particular, their
criticism that our principles lack directive moral substance (as unspecified principles) applies to their rules in a
near-identical way, because their rules are simply one level less abstract than our principles in the order of
abstraction. Any norm, principle, or rule will have this problem if it is underspecified for the task at hand. All
general norms, including Gert’s moral rules, are designed to cover a broad range of circumstances. If general
rules are not specified in biomedical ethics, they are almost always too general and will fail to provide adequate
normative guidance. Like our principles, Clouser and Gert’s rules (e.g., “Don’t cheat,” “Don’t deceive,” and “Do
your duty”) lack specificity in their original general form. One tier less abstract than our principles, their rules
are in effect at the level of partially specified principles, which explains why their rules do, we agree, have a
more directive and specific content than our more general principles. Our account of principles and rules does,
however, include a set of moral rules similar to the rules embraced by Gert and his colleagues.5 As discussed
below, some of their rules presuppose or require our principles of respect for autonomy and beneficence, which
they reject as basic moral norms of obligation.
Regarding their criticism that our principles are checklists or headings without deep moral substance, we agree
that principles order, classify, and group moral norms that require additional content and specificity. However,
until principles are analyzed and interpreted (as we do in every first section of Chapters 4–7) and then specified
and connected to other norms (as we do in later sections of each of these chapters), it is unreasonable to expect
more than a classification scheme that organizes the normative content and provides general rather than specific
moral guidance.6 Moreover, the balancing that is often required can occur only in concrete situations.
Regarding the Gert-Clouser criticism that principles conflict with other principles in ways that our account
cannot handle, we acknowledge that moral frameworks of principles do not themselves resolve conflicts among
principles and derivative rules. No framework of general guidelines could reasonably anticipate the full range of
conflicts, but the Gert and Clouser system does no more to settle this problem than our framework does. In
Chapter 1 we maintain that our theory handles this problem through both balancing and specification, whereas
their account assumes that its “more concrete” rules escape the need for specification. Only a theory that could
put enough content in its norms to escape conflicts and dilemmas in all contexts could live up to the Clouser-
Gert demand. In our judgment, no general moral theory has ever achieved the goal of a fully specified system of
norms for health care ethics.7
Experience and sound judgment are indispensable allies in resolving these problems. Thomas Nagel has
forcefully argued that an unconnected heap of obligations and values is an ineradicable feature of morality, and
W. D. Ross rightly argued that many philosophers have forced an architectonic of unwarranted simplicity on
ethics.8 Some critics of Ross’s account and ours charge that we fail to achieve systematic unity in moral theory,
but we regard some measure of disunity, conflict, and ambiguity as pervasive features of the moral life that are
unlikely to be entirely eliminated by a moral theory. Moral theory offers suitable and effective methods such as
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specification, balancing, and ways of adjusting norms to achieve consistency, but theories should not be
expected to eliminate all untidiness, complexity, and conflict.
We accept the criticism that our principle-based analysis fails to provide a general ethical theory, but we do not
consider it a telling objection. We do not claim to have constructed either a general ethical theory or a
comprehensive theory of the common morality, and we do not claim that our principles and methods are
analogous to or substitute for the principles and methods of justification in leading classical theories, such as
utilitarianism, with its principle of utility, and Kantianism, with its categorical imperative. We express some
skepticism about these general theories in Chapter 9 on grounds that the goal of a unified foundation for ethics is
likely to misrepresent some vital aspects of the moral life.9
In response to the Gert-Clouser criticism that the principle of beneficence expresses a moral ideal, not a moral
obligation, our claim is that their thesis distorts the common morality. Their theory holds that one is never
morally required (except by role, professional, or community duties) to prevent or remove harm or evil, but only
to avoid causing harm or evil. They recognize no requirement to do anything that confers a benefit or prevents a
harm—only to avoid causing harms or harmful events and conditions.10 Their thesis makes beneficence merely
a moral ideal, and thereby misreads the commitments of the common morality, which requires some beneficent
actions while recommending beneficent moral ideals.
The claim that beneficence is never morally required is not supported even within the heart of Gert’s account of
moral obligations, despite his statements to the contrary. In his book Morality: Its Nature and Justification, Gert
relies in several places on the premise that one is morally obligated to act beneficently. For example, he
interprets one of his ten basic moral rules, “Do your duty,” to incorporate obligations of beneficence. Gert
explains his system and its commitments as follows:
Although duties, in general, go with offices, jobs, roles, etc., there are some duties that seem more
general. … In any civilized society, if a child collapses in your arms, you have a duty to seek help.
You cannot simply lay him out on the ground and walk away. In most civilized societies one has a
duty to help when (1) one is in physical proximity to someone in need of help to avoid a serious
evil, usually death or serious injury, (2) one is in a unique or close to unique position to provide that
help, and (3) it would be relatively cost-free for one to provide that help.11
Gert maintains that all such requirements are supported “in any civilized society” by the foundational moral rule
“Do your duty.” These requirements are identical to the obligations that follow from beneficence, a term in wide
use in ethical theory since at least the eighteenth century. Gert’s duty to help is best understood as a specification
of the general principle(s) of beneficence. In both his moral theory and ours this duty is not merely relative to the
conditions of a “civilized society.” It therefore is not the case that Gert’s system lacks obligations of beneficence
in our sense of the term.12 To generalize, much in principlism that Clouser and Gert appear to reject is
incorporated into or presupposed by their last unspecified rule, “Do your duty.” Their theory of the moral system
therefore does not provide an alternative to our substantive claims regarding the nature and scope of obligations.
Numerous substantive requirements of the common morality are also better expressed in the language of
principles than in the language of rules. Consider the principle of respect for autonomy, which Gert and his
colleagues find as problematic as principles of justice and beneficence. Their disregard of this principle renders
their assessments of some cases convoluted and puzzling. Here is one such case: Following a serious accident, a
patient, while still conscious, refuses a blood transfusion on religious grounds; he then falls unconscious, and his
physicians believe that he will die unless he receives a transfusion. Gert and Culver argue that the provision of a
blood transfusion under these circumstances is paternalistic and wrong because, after the patient regains
consciousness following the transfusion, the physicians must then violate either the moral rule against deception
or the moral rule against causing pain: If they did not tell the patient about the transfusion, they would violate
the rule against deception; if they did tell him, they would cause him pain.13
Gert and Culver’s rejection of the principle of respect for autonomy forces them through this convoluted process
of reasoning to this problematic conclusion. Early on, their theory lacked the normative resources to argue that
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the transfusion in this case is paternalistic and prima facie wrong because it violates the competent patient’s
expressed wishes and choices.14 Initially, Gert’s moral rule “Do not deprive of freedom” was narrowly construed
to prohibit blocking a person’s opportunities to take action. In order to address problems that arise from the
blood transfusion case, and similar cases, Gert and his colleagues later interpreted this moral rule more broadly
to also include the “freedom from being acted upon.”15 This expanded interpretation is reasonable, but their rule,
so interpreted, then approximates the principle of respect for autonomy as we analyze it—a principle they say
they reject.
We conclude that the top-down theory of moral rules developed by Gert and colleagues encounters several
problems and lacks sufficient power to show that it is preferable to our principlist account. Nonetheless, it offers
important insights into the moral life, to which we return later in this chapter.
BOTTOM-UP MODELS: CASES AND ANALOGICAL REASONING
Some writers in biomedical ethics concentrate on practical decision making without regard to general principles
and theories. They believe that moral justification proceeds bottom up (inductively) by contrast to top-down
(deductively). Inductivists, as we will refer to them, argue that we reason from particular instances to general
statements or positions. For example, we use existing social practices, insight-producing novel cases, and
comparative case analysis as the starting points from which to make decisions in particular cases and then to
generalize to important moral norms. Inductivists emphasize an evolving moral life that reflects experience with
difficult cases, analogy from prior practice, and exemplary lives and narratives of the sort we discussed in
Chapter 2. “Inductivism” and “bottom-up models” are broad categories containing several methodologies that
are wary of top-down theories. Pragmatism,16 particularism,17 and narrative approaches,18 as well as some
forms of feminism and virtue theory (as discussed in Chapter 2), arguably qualify as bottom-up accounts.
Inductivists propose that particular judgments in concrete cases provide warrants to accept moral conclusions
independently of general norms. They see rules and principles as derivative, rather than primary, in the order of
knowledge and of justification. Hence, the meaning, function, and weight of a principle derive from previous
moral struggles and reflection. For example, physicians once regarded withdrawing lifesaving medical
technologies from patients as an act of impermissible killing. After confronting agonizing cases, they and society
came to frame many of these acts as cases of permissible allowing to die and sometimes as morally required acts
of acknowledging treatment refusals by patients. This change resulted from extensive experience with cases of
both withdrawing and declining to withdraw treatment. From this perspective, all specific moral norms arise and
are refined over time; they never become more than provisionally secure points in a cultural matrix of
guidelines.
Consider an example from the explosion of interest in surrogate decision making starting in the last quarter of
the twentieth century. A series of cases, beginning with the influential case of Karen Ann Quinlan (1976),19
challenged medical ethics and the courts to develop a new framework of substantive rules for responsible
surrogate decision making about life-sustaining treatments, as well as authority rules regarding who should make
those decisions. This approach involved a laborious examination of analogous cases, and testing new hypotheses
against preexisting norms. Cases subsequent to Quinlan were addressed by appealing to similarities and
dissimilarities to Quinlan and related cases. A string of cases with some similar features established the terms of
the ethics of surrogate decision making over a course of several years.
Casuistry: Case-Based Reasoning
Proponents of casuistry, an influential version of bottom-up thinking in biomedical ethics, have revived a model
that enjoyed an impressive influence in medieval and early modern philosophy and have refashioned it for
modern biomedical ethics.20 The term casuistry (from the Latin casus, meaning “case”) refers to the use of case
comparison and analogy to reach moral conclusions.21
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Albert Jonsen and Stephen Toulmin, the two most prominent proponents of this approach, have expressed
reservations about our framework of principles.22 In general, casuists are skeptical of rules, rights, and general
theories that are divorced from or developed independently of cases, history, precedents, and circumstances.
Appropriate moral judgments occur, they argue, through an intimate acquaintance with particular situations and
the historical record of moral judgments about similar cases. Casuists disavow the goal of a tidy, unified theory
containing inflexible universal principles.23
However, casuists do not entirely exclude rules and principles from moral thinking, and they welcome them
when they are consistent with their form of case analysis. Because we do not in this book accept inflexible,
unbending principles, Jonsen and Toulmin are open to our interpretation and use of principles even though they
think it does not penetrate to the core territory of moral thinking. As casuists, they insist that moral judgments
are often made when no appeal to principles is available. For example, we make moral judgments when
principles, rules, or rights conflict and no further recourse to a higher principle, rule, or right is available.
Furthermore, when principles are interpreted inflexibly, irrespective of the nuances of the case, casuists see a
“tyranny of principles”24 in which attempts to resolve moral problems suffer from a gridlock of conflicting
principles, and moral debate becomes both intemperate and interminable.
This impasse can be avoided, Jonsen and Toulmin argue, by focusing on points of shared agreement about cases
rather than on shared principles. The following is their prime example, drawn from their experiences with the
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research:
The one thing [individual commissioners] could not agree on was why they agreed. … Instead of
securely established universal principles, … giving them intellectual grounding for particular
judgments about specific kinds of cases, it was the other way around.
The locus of certitude in the commissioners’ discussions … lay in a shared perception of what was
specifically at stake in particular kinds of human situations. … That could never have been derived
from the supposed theoretical certainty of the principles to which individual commissioners
appealed in their personal accounts.25
In this account, casuistical reasoning rather than universal principles or rules forged agreement, even though
commissioners accepted and explicitly stated that they reasoned from “established universal principles.”
According to Jonsen and Toulmin, the commissioners functioned successfully by appealing to paradigms and
families of cases, despite the diverse principles and theoretical perspectives held by individual commissioners.
Although commissioners cited moral principles to justify their collective conclusions—and unanimously
endorsed several general principles in their Belmont Report26—Jonsen and Toulmin argue that these principles
were in the end less important in the commission’s moral deliberation than were judgments about cases.27 They
note specifically that the principlist approach endorsed in the Belmont Report came late in the work of the
commission after it had deliberated about various types of cases, such as research involving prisoners and
research on children.
A simple example illustrates the Jonsen-Toulmin claim that moral certitude resides in case judgments rather than
principles or theory: We know that it is generally morally wrong to introduce significant risks to children in
biomedical research that does not offer them the prospect of direct medical benefit. We are confident in the
statement, “We should not give this healthy baby the flu in order to test a new decongestant,” even though we
may be unsure which principle controls this judgment or whether some viable theory sanctions it. The casuist’s
assessment is that we are almost always more secure in such particular moral conclusions than we are about the
theory or principles that purport to show why these conclusions are correct. Practical knowledge about cases
takes priority over theoretical knowledge. For example, if a principle or a theory instructed us to give the flu to
children in order to test drugs, as some versions of utilitarianism seem to propose, this instruction would provide
us with a good reason for rejecting that principle or theory. Moral certitude, then, is found at the bottom—that is,
in judgments about particular cases, precedent cases, and practical reasoning—not at the top in theories,
principles, or theoretical reasoning.
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When confronting new cases, casuists compare them to paradigmatically right and wrong actions and to similar
and acceptable cases, as well as to similar and unacceptable cases. Precedent cases and analogical reasoning are
paramount in this method of moral thinking. If a new case arises involving a problem of medical confidentiality,
casuists consider analogous cases in which breaches of confidentiality were justified or unjustified to see
whether such a breach is justified in the new case. Paradigm cases become the enduring and authoritative
sources of appeal. For example, the literature of biomedical ethics frequently invokes cases such as the Karen
Ann Quinlan case and the Tuskegee syphilis experiments as sources of authority for new judgments. Decisions
reached about moral rights and wrongs in pivotal cases become authoritative for new cases, and they profoundly
affect prevailing standards of fairness, negligence, paternalistic interventions, and the like.28
A similar method appears in case law through the doctrine of precedent. When an appellate court decides a
particular case, its judgment is positioned to become authoritative for other courts hearing cases with relevantly
similar facts. Casuists argue that moral authority likewise develops from a social consensus about proper
conduct that has been formed around cases. This consensus is then extended to new cases by analogy to the past
cases around which the consensus was formed. As similar cases and similar conclusions evolve, a society
becomes increasingly confident in its moral conclusions and acknowledges firm generalizations in the form of
principles, rules, and rights in its evolving tradition of ethical reflection. These generalizations are interpreted as
summary statements of a society’s previously developed moral insights about cases.
The Limits of Casuistry
Casuists have sometimes overstated the power of their account of the nature of moral judgments and justification
and have understated the value of competing accounts, but a balanced assessment of the role of cases in moral
reasoning can remedy these problems. Some leading casuistical writers have already qualified their positions in
ways that make them allies of, rather than competitors to, approaches that feature general principles.29
Casuists sometimes seem to suggest that paradigm cases speak for themselves or inform moral judgment by their
facts alone, which is an implausible thesis. For the casuist to move constructively from case to case, a
recognized and morally relevant norm must connect the cases. The norm is not part of the facts or narrative of
the cases involved; it is a way of interpreting, evaluating, and linking cases. All analogical reasoning in casuistry
requires a connecting norm to indicate that one sequence of events is morally like or unlike another sequence in
relevant respects. The creation or discovery of these norms is not achieved merely by analogy. In addition to
showing that one case is similar to another, casuists must show (1) that the two cases are similar in morally
relevant respects, and (2) that the putatively paradigm cases, whether positive or negative, have moral authority.
Jonsen addresses this problem by distinguishing descriptive elements in a case from moral maxims embedded in
the case: “These maxims provide the ‘morals’ of the story. For most cases of interest, there are several morals,
because several maxims seem to conflict. The work of casuistry is to determine which maxim should rule the
case and to what extent.”30 This thesis fits well with our views about prima facie principles and rules. Casuistry
presupposes principles, rules, or maxims as essential moral elements in paradigm cases and in the assessment of
new cases. As Jonsen concisely puts it, “The principles are, in the casuist’s view, embedded in the [paradigm]
case”31 even though the principles are not reducible to the facts of the cases. Accordingly, the paradigm case
must be understood as very different from the facts in that case. It is an amalgam of the facts and the morally
relevant norms.
Basically, the casuists’ paradigm cases combine both facts that can be generalized to other cases (e.g., “The
patient refused the recommended treatment”) and settled values that are generalized (e.g., “Competent patients
have a right to refuse treatment”). These settled values are analytically distinct from the facts of particular cases.
In casuistical appeals, values and facts are bound together in paradigm cases, and the central values are
preserved from one case to the next. The more general the central values—the connecting norms—the closer
they come in status to prima facie principles.
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Casuists maintain that cases point beyond themselves and evolve into generalizations, but a key problem for
casuists is that the cases can evolve in the wrong way if improperly handled from the outset. This problem of
justification is worrisome because casuists have no methodological resource to prevent a biased development of
case-based judgments or a neglect of morally relevant features of cases. A tyranny of the paradigm case can
result, just as there can be a tyranny of unyielding principles or dogmas.
The casuists’ approach to identifying and labeling cases often seems more intuitive than reasoned, with
insufficient attention to the process of narrating cases. An obvious but fundamental point, emphasized by literary
critics, is that a case is itself a mini-narrative. Presenting a case is telling a story, with context, circumstances,
characters, conflicts, conduct, consequences, and so forth. Narration inevitably involves framing the story,
selecting the details, and constructing the narrative. Accordingly, it is important to critically investigate the kind
of evaluative and other assumptions that often, perhaps unwittingly, structure cases in particular ways and may
lead to both classifications and conclusions that are not adequately examined or ultimately justified.32
Consider now the evaluative descriptions of two different cases. In a case reported in the Journal of the
American Medical Association under the title “It’s Over, Debbie,”33 a medical resident injects a terminally ill
woman with enough morphine to end her life in response to her request, uttered in their first encounter: “Let’s
get this over with.” Jonsen classifies this case as one of killing—bringing it under a taxonomy of cases of killing,
governed by various maxims—and then he reasons analogically from paradigm cases in this taxonomy.34
While Jonsen’s case description, classification, and analysis are straightforward in this case, conflicts often arise
about the evaluative judgments that are reached about cases because of the type and classification chosen. This
problem is evident in another example, which we introduced in Chapter 5: the disconnection of a ventilator
maintaining the life of a patient with amyotrophic lateral sclerosis (Lou Gehrig’s disease). At a conference,
physicians presented and described this as an end-of-life case, in which the “patient” decided to discontinue the
ventilator.35 However, the audience—many of whom were experienced in the long-term use of ventilators—
challenged this description and classification. For them this was a “disability” case in which the patient needed
better care, more complete information, and increased options, particularly to help him deal with the isolation he
felt following his wife’s recent death.
These disputes over narration and classification show the importance of examining the assumptions,
perspectives, and evaluations that enter into the description of cases. The clinicians presenting this case thought
it was a “textbook case” of decision making at the end of life, but the audience considered it “a story in which a
life was ended as a result of failures of information and assistance by the presenters themselves.”36
This example underlines the importance of attending to what John Arras categorizes as “moral diagnosis,” that
is, the process of determining what a case is centrally about. This analysis is required because “real life does not
announce the nature of problems in advance.”37 In the absence of reliable pre-assigned categories and labels, it
is essential to attend with imagination and discernment to the diagnostic process in cases in medical ethics just
as in cases in medical care. This diagnostic process requires recognizing and reducing bias in the “describing,
framing, selecting and comparing of cases and paradigms.”38 Bias-reduction strategies should include describing
cases in fuller detail and narrating them from different perspectives, to be followed by careful analysis.
Because the casuistical method works only from the bottom up, it may lack the necessary critical distance from
cultural blindness, rash analogy, and tyrannical popular opinion.39 How is the casuist to identify unjust practices,
predisposing bias, and prejudicial use of analogy to avoid one-sided judgments? Identification of the morally
relevant features of a particular case depends on those who make judgments about cases, and these individuals
may operate from unduly partial perspectives. In this regard, the ethics of casuistry contrasts sharply with a
stable system of principles, human rights, and virtuous agents. Even if we are confident that morally mature
cultures maintain resources for critical distancing and self-evaluation, these resources do not emerge from the
methods of casuistry itself.
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The root of the problem is that casuistry is a method that lacks and fails to provide content. As a vital instrument
of thought, it displays the fundamental importance of case comparison and analogy in moral thinking, but it
lacks initial moral premises, tools of criticism, and adequate forms of justification. It also lacks a substantive
ground of “certitude,” in Jonsen and Toulmin’s language.40
Casuistry works best in showing that we appropriately reason by analogy and are often confident in the
conclusions we reach. For example, if we feel better after using a certain medicine, we feel comfortable in
recommending it to other persons, in the expectation that they too will feel better. A logical form is present in all
uses of analogy: If some person or thing has one property associated with a second property, and another person
or thing also has the first property, it is justified to infer that the second person or thing also has the second
property. However, such analogies often fail: Our friends may not feel better after they take our favored
medicine. Analogies never warrant a claim of truth, and we often do not know something by analogy that we
think we know. The method of casuistry leaves us with this problem: No matter how many properties one case
and a similar case share, our inference to another property in the second case may mislead or produce false
statements.
These concerns do not amount to sufficient reasons for rejecting either the casuistical method or the use of
analogy in moral reasoning. Both are helpful as long as we have a solid knowledge base that allows their proper
use. However, to obtain that knowledge base, the casuistical method must be supplemented by norms of moral
relevance that incorporate prior judgments of right and wrong conduct.41 We will return to this problem of a
proper knowledge base when we come to the subject of “considered judgments” later in this chapter.
Casuists sometimes confuse the fact that we may have no need for a general ethical theory for purposes of
practical ethics with the lack of a need for practical principles and their specification. They also sometimes
conflate certitude about principles with certitude about theory. One of our most important claims later in this
chapter is that the general public and the mainstream of moral philosophy have found a “locus of certitude” in
considered judgments about universal moral norms, without finding certitude in a particular moral theory about
the foundation of these principles. We agree with casuists that in practical deliberation we often have a higher
level of confidence in our judgments about particular cases than we have in appeals to moral theories, but the
principles and rules that are central to the common morality enjoy the highest level of certitude.
In a major methodological statement, Jonsen describes connections between principles and casuistry:
Principles, such as respect, beneficence, veracity, and so forth, are invoked necessarily and
spontaneously in any serious moral discourse. … Moral terms and arguments are imbedded in every
case, usually in the form of maxims or enthymemes. The more general principles are never far from
these maxims and enthymemes and are often explicitly invoked. Thus, casuistry is not an alternative
to principles, in the sense that one might be able to perform good casuistry without principles. In
another sense, casuistry is an alternative to principles: they are alternative scholarly activities.42
While it is doubtful that alternative scholarly activities are at work, the two methods are different and
complementary. The prima facie principles we propose are not vulnerable to the casuists’ critique of rigid
principles and are not excluded by their methodology. The movement from principles to specified rules is similar
to Jonsen’s account of casuistical method, which involves tailoring maxims to fit a case through progressive
interactions with other relevant cases that are governed by maxims. Casuists and principlists should be able to
agree that when they reflect on cases and policies, they rarely have in hand principles that were formulated
without reference to experience with cases, or paradigm cases that lack embedded general principles.
AN INTEGRATED MODEL: REFLECTIVE EQUILIBRIUM
Accounts from “the top” (theories, principles, rules) and “the bottom” (cases, analogies, particular judgments)
must be either supplemented or replaced in order to be practically useful in biomedical ethics. Neither general
principles nor paradigm cases adequately guide the formation of justified moral judgments in many situations.
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Instead of these models, we support a version of a third model of method, justification, and theory construction
that is sometimes characterized as a coherence theory or coherentism. However, strict coherentists hold that
there is no identifiable group of initial norms that are warranted beliefs, a thesis we reject. We hold that the
framework of basic principles, their specifications, and balancing judgments provide critically important support
beyond mere coherence.
Our account is heavily indebted to John Rawls’s theory of reflective equilibrium, a term he coined to depict a
way of bringing considered judgments, principles, and background theories into a state of equilibrium or
harmony, that is, coherence.43 Considered judgments are those least likely to be affected by conflicts of interest
and other distorting influences and therefore appear at least provisionally acceptable on their own without
argumentative support. We follow Rawls’s lead by making the principles in our framework the main considered
judgments at the roots of medical morality.
Method in ethics, in this account, begins with the considered judgments in which we have the highest confidence
and believe to have the least bias. They are “judgments in which our moral capacities are most likely to be
displayed without distortion.” Examples are judgments about the wrongness of racial discrimination, religious
intolerance, and political repression.44 “Without distortion” does not refer to intuitively certain judgments. On
what basis, then, can we be confident that our considered judgments are sufficiently free of bias and constitute
acceptable starting points?
This problem is best handled by a delineation of the epistemic and moral qualities of persons or institutions that
participate in the selection of considered judgments. Moral judges are entitled to claims to have reached
considered judgments only if those judgments have been framed from a perspective that reins in conflicts of
interest and other temptations of self-interest. And evaluators must exhibit absence of prejudice, relevant
knowledge, and honesty, as well as attitudes of sympathy and compassion for the welfare of others. Evaluators
must also display these attitudes in a consistent and sustained way. The point of appealing to these epistemic and
moral virtues is to identify the conditions under which it is justified to claim that a judgment qualifies as
“considered.” Mere pervasiveness of some set of moral beliefs is not sufficient. Convergence reached by
individuals qualified to reach the considered judgments is the essential condition.
Whenever some normative feature in a person’s or a group’s prevailing structure of moral views conflicts with
one or more of their considered judgments (a contingent conflict), they must modify something in their
viewpoint and strive to achieve equilibrium and overall coherence. Even the considered judgments that we
accept as central in the web of our moral beliefs are subject to revision once a conflict occurs. The goal of
reflective equilibrium is to match, prune, and adjust considered judgments, their specifications, and other
relevant beliefs to render them coherent. We then must test the resultant guides to see if they yield incoherent
results. If coherence proves impossible to achieve, we must readjust some points in the system of beliefs in a
renewed search for coherence.
Many particular codes of ethics at work in medical institutions are coherent, but they also can be expected to
produce problems of incoherence or incompleteness as the code is specified or modified. Our theory does not
ask more than that agents faithfully specify and balance principles and then monitor the structure of norms with
careful attention to overall coherence. Persons involved in rendering norms coherent should not expect an end to
this process of revision that provides a complete normative account. Establishing policies and specifying norms
in new directions using reflective equilibrium is a continuous work in progress—a relentless process of
improving moral norms and increasing coherence.
Consider, as an example in medical morality, the place of the traditional moral axiom, “Put the patient’s interests
first.” To hold together a system of beliefs in which this rule plays a critical role, we should seek to make the
rule as coherent as possible with other considered judgments about responsibilities in clinical teaching, to
subjects in the conduct of research, to patients’ families, to sponsors in clinical trials, to health care insurance
companies, to health care institutions such as hospitals, in public health, and so forth. The requirement to bring
these diverse moral responsibilities into coherence and then test the results against other moral commitments is
complex and daunting at times. It is difficult, if not impossible, to hold the intuitively attractive rule “Put the
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patient’s interests first” as absolute when we confront the many possible conflicts this rule can have with other
commitments, including public and institutional policies. The rule is an acceptable starting premise—a
considered judgment—but not an absolute principle. Accordingly, we are left with a range of options about how
to specify this rule and then balance it against other norms to create an overall coherence of norms.45
A relatively simple example from the ethics of the distribution of organs for transplantation illustrates this moral
problem. Policymakers have been attracted to each of the following options: (1) distribute organs by expected
number of years of survival of transplant candidates in order to maximize the beneficial outcome of the
procedure, and (2) distribute organs by using a waiting list to give every candidate an equal opportunity. As they
stand, these two distributive rules are inconsistent. However, elements of both can be retained in devising a
coherent policy by setting limits on these rules and specifying them into consistency. The outcome of this
process must then be made coherent with all other relevant principles and rules, such as norms of
nondiscrimination against the elderly and the role of patients’ ability to pay in the allocation of expensive
medical procedures.
The goal of bringing the overall set of considered judgments and related moral and factual beliefs into coherence
is best understood as one version of “wide reflective equilibrium.”46 The goal of wide reflective equilibrium in
our account is to identify the relevant particular judgments, rules, concepts, data, and theories as resources for
moral reflection and to bring them into equilibrium or to modify or reject some of them as incoherent with the
belief system. Moral views included are beliefs about particular cases, about rules and principles, about virtue
and character, about consequentialist and nonconsequentialist forms of justification, about the role of moral
sentiments, and the like.
Achieving a state of reflective equilibrium in which all beliefs fit together coherently, with no residual conflicts
or incoherence, is an ideal that will be realized only partially. The trimming, repair, and reshaping of beliefs will
need to occur repeatedly in response to new situations of conflicting norms. However, this ideal is not a utopian
vision toward which no progress can be made. Particular moralities are works continuously under development,
not finished products.47
As an example of the threat of incoherence in the search for reflective equilibrium, consider our limited support
in Chapter 5 of physician-assisted death at a patient’s request. We there take seriously slippery-slope arguments
in opposition to physician-assisted dying, yet we support various forms of physician assistance. David DeGrazia
has questioned our assertion that these two claims can be rendered consistent. He views our position as a
“compromise [that] apparently leads to contradiction,” and so to incoherence.48 To see how the two views are
consistent, not contradictory, we return to the distinction we introduced in Chapter 1 between the justification of
policies and the justification of acts. Public laws sometimes justifiably prohibit conduct that might be morally
justified in individual cases. In the instant case, two moral questions about physician-assisted hastening of death
need to be distinguished: (1) Are physicians ever morally justified in complying with patients’ requests for
assistance in acts of hastened death? (2) Is there an adequate moral basis to justify the legalization of physician-
assisted hastening of death? We argue in Chapter 5 that there are morally justified acts of assisting patients in
hastening their deaths, but that once public considerations and consequences external to the private relationship
between a physician and a patient are the issue—including the implications of legalized physician-assisted
hastening of death for medical education and medical practice in hospitals and nursing homes—these external
considerations may (but also may not) provide sufficient moral reasons for prohibiting physicians from engaging
in such actions as a matter of public law. Accordingly, policies that legalize physician assistance are morally
unacceptable under some circumstances, but acceptable under others. There is no inconsistency or incoherence
in this position on physician-assisted hastening of death.
Justification is a matter of reflective equilibrium in our model, and it is never a matter of bare coherence because
the body of substantive judgments and principles that cohere could be morally unsatisfactory. Bare coherence
could be nothing more than a system of prejudices and therefore must be constrained by substantive norms. An
example of this problem is the “Pirates’ Creed of Ethics or Custom of the Brothers of the Coast.”49 Formed as a
contract between marauders circa 1640, this creed is a coherent set of rules governing mutual assistance in
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emergencies, penalties for prohibited acts, the distribution of spoils, modes of communication, compensation for
injury, and “courts of honour” that resolve disputes. All crew members had to swear an oath of allegiance,
commonly taken on a Bible. This body of substantive rules and principles, although coherent, is a moral outrage.
Its requirement to bear arms for purpose of theft, acceptance of a distributive scheme of spoils, and provision of
slaves as compensation for injury involve immoral practices. But what justifies us in saying that this code is a
morally unacceptable code of ethics even if it is entirely coherent?
This question points to the importance of starting with considered judgments that are our most thoroughly
examined moral beliefs. Once this collection is assembled, we need to cast the net more broadly in interpreting,
specifying, and generalizing these beliefs. Certain normative views are unacceptable not merely because of
incoherence. They are wrong because there is no way when starting from considered moral judgments that,
through reflective equilibrium, we could wind up with anything approximating the provisions in the Pirates’
Creed.
In this book we start in the process of reflective equilibrium with a set of considered judgments that are
acceptable initially without argumentative support—in particular with the set of four principles as a framework
for biomedical ethics. This kind of approach is commonly associated with foundationalist moral theories,
whereas we have given a central role to coherence achieved through the process of reflective equilibrium.
Coherence theory is widely considered anti-foundationalist, whereas our common-morality theory may seem to
be inherently foundationalist. This is one reason we do not classify our account as a pure coherence theory, and
instead present it as reaching for coherence after starting with considered judgments as the basic building blocks.
Some philosophers will insist that “basic building blocks” entails a foundationalist account, but our theory is an
attempt to retain the best from both foundationalist theory and coherentist theory.
We cannot here engage the many tangled issues about whether coherentism is philosophically preferable to
foundationalism. Our path around these problems is to present an appropriately adjusted version of reflective
equilibrium and to join it with our common-morality approach to considered judgments. In this way, coherence
serves as a key constraint on the formulation, specification, and balancing of the norms that guide actions. This
constraint cannot be compromised or avoided in the attempt to achieve justification when engaged in
specification and balancing.
To avoid an unduly conservative or parochial set of beliefs, a wide body of moral experience should be
consulted to discover points of convergence. Consider an analogy to eyewitnesses in a courtroom. If sufficient
numbers of independent witnesses converge to agreement in recounting the facts of a story, the story gains
credibility beyond the credibility of any one individual who tells it. This process helps eliminate biases or
misperceptions found in some accounts and helps eradicate stories that do not converge and cannot be made
consistent with the main lines of testimony. The greater the coherence in a story that descends from initially
credible premises and convergent testimony, the more likely we are to believe it and accept the story as correct.
As we increase the number of accounts, establish convergence, eliminate biased observations, and increase
coherence, we become increasingly confident that our beliefs are justified and should be accepted. When we find
wider and wider confirmation of hypotheses about what should be believed morally, the best explanation is that
these hypotheses are the right ones, although other considerations will often be at work in determining whether
moral beliefs held by the various parties truly have epistemic legitimacy.
In conclusion, we note some unresolved problems about the method of reflective equilibrium that we are not
able to address here.50 First, some ambiguity surrounds the precise aim of this method. It might be used in
reflecting on public policies, constructing a moral philosophy, or strengthening an individual’s set of moral
beliefs. The focus might be on judgments, on policies, on cases, or on finding moral truth. Second, it can be
difficult to determine when an effort to achieve reflective equilibrium is going well and to know when one has
succeeded. Explicit uses of the method (by contrast to claims to be using it) are difficult to locate in the
biomedical ethics literature.51 Most discussions are theoretical and distant from contexts of practice. We are still
learning how well or how poorly the method has served or can be improved to serve practical ethics. Third, the
far-ranging objectives of truly wide reflective equilibrium are intimidating and may be unattainable ideals of
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both comprehensiveness and coherence. The goal of bringing into coherence widely diverse sets of beliefs in
wide reflective equilibrium has not yet been achieved.
COMMON-MORALITY THEORY
We return now to the section of Chapter 1 in which we first sketched our account of common morality as a
source of considered judgments.52 One of our assumptions is that no more central moral content exists as a
starting point for biomedical ethics than the norms from which we have formulated our four clusters of
principles. “No more central” should not be understood as an assertion that the principles provide the sole moral
content. We do not claim that principles and derivative rules as we have formulated them establish the basic
content of the common morality. We do not present the principles—or the principles together with the focal
virtues and the human rights that we discuss—as alone constituting the common morality. The set of principles
featured in Chapter 4 through Chapter 7 and our discussion of the moral virtues are drawn from the territory of
common morality, however small or large it may be. Our thesis is merely that the principles are a reasonable
formulation of some vital norms of the common morality and that the principles are well suited as a framework
for biomedical ethics. We agree with some of our commentators that there is much more to the common morality
than we capture in this book.53
All common-morality theories share several features: First, they rely on ordinary, shared moral beliefs for their
starting content. Second, they hold that an ethical theory that cannot be made consistent with these pretheoretical
moral values falls under suspicion. Third, all common-morality theories are pluralistic: They contain two or
more nonabsolute (prima facie) moral norms.
Our common-morality theory does not view customary moralities as part of the common morality even though
they may embody elements of the common morality. Our theory is committed to a global bioethics in the sense
that the principles are universally applicable, not merely local, customary, or cultural rules. The general norms in
the common morality provide a basis for evaluating and criticizing customary moral viewpoints when they are
deficient. Our particular account of the common morality also unites it with the method of reflective equilibrium
delineated earlier.
Some writers in ethical theory and applied ethics seem to think that we would justifiably have more confidence
in our principles and considered judgments if we could justify them on the basis of a comprehensive ethical
theory. However, this outlook has the cart pulling the donkey: We should have more confidence in an ethical
theory if it could be shown coherent in a comprehensive way with the considered judgments including a variety
of norms comprising the common morality. If an ethical theory were to reject the various central principles,
rights, and virtues we have discussed, we would have a sound reason for skepticism about the theory rather than
skepticism about these principles, rights, and virtues. Our presentation of principles, virtues, and rights, together
with our attempts to show their consistency with other aspects of the moral life such as moral emotions,
constitutes the normative account in this volume, but we do not claim that another common-morality theory
could not be superior to our account.54
Moral Change
It is a matter of fact that particular moralities, customary practices, and so-called consensus moralities can and
do change. They may even change by a complete reversal of position on some issues. For example, a code of
research ethics might at one time endorse placebo-controlled trials only to condemn such trials at a later time.
Our defense of the method of reflective equilibrium invites related questions about moral change. Considered
judgments occupy a central position and are the root of many inferred beliefs, but even considered judgments
are, in principle, revisable. It follows that no norm can, in the method we have defended, claim the privileged
status of being immune to revision even though considered judgments are the central starting points.
However, both the method of reflective equilibrium and the fact of change in specified norms and particular
moralities leave unresolved whether the common morality, which is a universal morality, can itself change by a
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process of subtraction, addition, or substantive emendation. Moral change entails that what was not previously
morally required (or prohibited) at a later time becomes morally required (or prohibited). Could it come to be the
case, morally, that we no longer have to keep our promises, that we can lie and deceive, or that a vice can
become a virtue? If such norms are not fixed, then they could evolve into different norms and alter the normative
content of the domain of morality.
In Gert’s theory, by contrast, change cannot occur in the norms of the common morality because the basic moral
rules are essential and timeless: “A general moral rule concerns actions open to all rational persons in all
societies at all times. … A general moral rule is unchanging and unchangeable; discovered rather than invented.
… Since general moral rules apply to all rational persons at all times, obviously they cannot be invented, or
changed, or subject to the will of anyone.”55 Gert’s position is clear but overstated. To the extent we can
envisage circumstances in which human society is better served by substantively changing or abandoning a norm
in the common morality, change could occur and could conceivably be justified. For example, it is conceivable,
however unlikely, that the rule that we must tell the truth could become so severely dangerous that we might
therefore abandon the rule altogether. The possibility of such change, however unlikely, weakens the claim that
there is a common morality with essential conditions and normative authority for all moral agents in all times
and places.
It would be dogmatic to assert without argument that the basic norms of the common morality cannot change,
but it is also difficult to construct a historical example of a central moral norm that has been or might be valid for
a limited duration before being abandoned because a good moral reason supported its displacement. No evidence
known to us suggests that societies have handled moral problems by either rejecting or altering basic norms in
the common morality. As circumstances change, we find moral reasons for saying that a norm has new
specifications or valid exceptions or can be outweighed by other norms. These adjustments are not reasons to
discard the norm. To the contrary, they show the lengths we often go to retain basic norms.
Clear-cut exceptions exist to even the most indispensable rules, such as the rule against killing. Particular
moralities have carefully constructed exceptions in cases of war, self-defense, criminal punishment, martyrdom,
misadventure, and the like. There is no reason to think that we cannot continue to handle social change by
allowing exceptions to one or more stable norms in the common morality. These exceptions can be made explicit
through new specifications of principles or rules.
In at least one notable respect moral change in the application of norms in the common morality has occurred
and will continue to occur. Even if abstract norms do not change, the scope of their application does change.
That is, the set of individuals to whom many or all of these principles and rules are deemed to apply changes,
and we may anticipate such changes to continue. Our arguments in Chapter 3 regarding moral status anticipate
this problem: “Who qualifies as belonging to the moral community?” may be the same question as, “Who
qualifies for moral status?” It is possible that we might radically alter our understanding of who or what qualifies
for moral status, who should receive moral respect, and who qualifies for protection by the full range of basic
rights. It is a matter of historical fact about the practice of slavery and the denial of rights to women that norms
about scope have rightly changed in many societies.
We also can envision a situation in which corresponding rules would be added to the common morality, by
contrast to rules being abandoned or swapped out. For example, the common morality could be expanded to
include a rule of equal moral consideration of persons fashioned as a strict rule of nondiscrimination. Depending
on the formulation of this rule, it could prohibit, for example, the various forms of discrimination that are now
widely regarded in many customary moralities as tolerable and perhaps even thoroughly justified. Current
examples are found in contexts that disallow women from serving as religious leaders; that allow discrimination
against gay, lesbian, and transgender individuals; that allow small businesses to discriminate in hiring by
choosing only persons of a preferred sex (e.g., an ethnic restaurant that hires only male servers); and so forth.
Inclusion of a basic moral rule of equal consideration of persons that challenged such practices would constitute
a substantial change in the common morality because no such rule now prevails.
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This kind of change may currently seem unlikely to occur, but we can conceive of the conditions under which
such changes would occur. Some might argue that the common morality has already been refined in a
conspicuously similar manner by changes in the way enslaved people, women, people of differing ethnicities,
people with disabilities, and persons from many groups who were once denied basic human rights have come to
be acknowledged as owed equal moral consideration. These changes in the scope of the application of norms
constitute major and actual, rather than hypothetical or merely conceivable, changes in moral beliefs and
practices.
But are such historical changes, which have upgraded the moral status of various classes of individuals, truly
changes in the common morality? The changes that have occurred in the way various classes of individuals such
as racial groups, ethnic groups, and women are morally regarded seem to be changes in a recognition of moral
status, changes in particular moralities, or changes in ethical and political theories, rather than changes in the
common morality. It is plausible to hold that the common morality does not now, and has never, included a
specific principle or provision of equal moral consideration for all individuals, whatever such a provision might
entail. We are confident that empirical investigation of rules determining who should receive equal consideration
would reveal pervasive differences across individuals and societies that are firmly committed to proper moral
conduct. A theory of the common morality therefore should remain open to the possibility that the common
morality could and should include rules of equal moral consideration for groups such as women, people of every
race and ethnicity, people with disabilities, the great apes, and other parties now excluded. On the matter of
equal moral consideration, the common morality is not where it should be, for reasons we provide in the
following section.56
Finally, can we confidently assert that norms prohibiting practices such as owning slaves are justified by the
common morality, even though these norms cannot be said to be themselves included in the common morality?
It might be argued that the common morality has no explicit standards that prohibit slavery, even though such
prohibitions are common in many societies as a specification of the common morality. From this perspective the
common morality has the capacity to be mined by particular moralities to justify rules that prohibit slavery. The
explicit commitments of the common morality to respect for autonomy, nonmaleficence, and the like contain
implicit commitments to norms that, when coherently assembled, would prohibit practices such as slave-owning.
However, this position is conceptually unsatisfactory as an account of common morality because it leaves space
for particular moralities not to specify in this way, which would leave these moralities open to the
accommodation of practices of slavery. So understood, this position holds that slavery is not prohibited by the
common morality. This interpretation of the principles in common morality fails to appreciate their conceptual
and moral depth. Slave-owning clearly violates respect for autonomy and nonmaleficence, and introduction of a
rule allowing this practice would leave the common morality in a state of moral incoherence, whether or not
slave-owning societies recognize this fact. Given our theory that considered judgments provide the starting
points for an account of common morality, an acceptance of respect for autonomy as a basic principle rules out
owning another person, thoroughly controlling that person’s actions, and the like. To think otherwise is to fail to
understand the concept and principle of respect for autonomy. An antislavery provision is not merely a matter of
specification of this principle. Rather, the prohibition of slavery is part of what it is to respect autonomy—and
arguably to accept the principle of nonmaleficence as well. Slavery is not coherent with these principles and
cannot be specified to be coherent with them. If slavery were allowed, there would always be an internal
incoherence in the principles of the common morality. In short, enslaving human beings is ineradicably
prohibited by basic commitments of common morality.
We will not further pursue this line of argument about the normative conceptual content of common morality,
but we stress its importance. Changes in the scope of individuals or groups protected by the norms of the
common morality are among the most momentous changes to occur in the history of moral practices. A theory of
the common morality that denies our capacity to criticize and even condemn traditions, communities, groups, or
individuals whose viewpoints are morally unacceptable would be an ineffectual and indefensible theory that
misunderstands the moral depth of common morality. We discuss the philosophical basis of this claim in treating
the second of three types of justification to be discussed in the following section.
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Three Types of Justification of Claims about a Common Morality
Three methods of justification are available to justify claims about the common morality: (1) empirical
justification, (2) normative theoretical justification, and (3) conceptual justification.57 These three methods and
their objectives have often been confused. Each type stands to justify a different conclusion or set of conclusions
about the common morality. We do not present a justification that actually uses one or more of the three
strategies—an immense project in the case of each of the three. Our sole aim in this section is to identify three
available types of justification and what they would justify in a fully developed account.
Empirical justification. In Chapter 1 we stated that the existence of the common morality might be
demonstrated empirically, although some skepticism exists about the prospects for achieving this goal. Some
commentators have interpreted us as holding (in previous editions) that common-morality theory is empirical in
nature and requires empirical proof.58 This interpretation misses a range of diverse approaches we recommend
to justify claims about the common morality; some of these approaches are empirical and some normative. We
first consider what would be entailed in an empirical investigation into whether a common morality exists.
If an empirical investigation were to show that universally accepted norms are in fact discoverable in the moral
beliefs of individuals, institutions, practices, and cultures, the claim that a common morality exists would be
empirically justified by such a discovery. However, we have previously noted that multiple particular moralities
exist and that similarities and differences between them are empirically confirmable. This claim about
differences in particular moralities is noncontroversial. But we have hypothesized that some central norms of
morality are held universally in common among morally committed persons. No available empirical studies
throw into question whether some particular moralities accept, whereas other particular moralities reject, the
norms of the common morality. Existing empirical data about moral beliefs generally descend from studies of
particular moralities that were never designed to determine whether a universally accepted morality exists. These
empirical investigations have usually studied cultural differences in the way moral rules have become embedded
and applied in cultures and organizations, but they have not investigated whether a common morality exists.
These studies succeed in showing cultural differences in the interpretation, specification, and balancing of moral
norms, but they do not study or show that cultures accept, ignore, abandon, or reject the standards of the
common morality. For example, empirical studies do not test whether a cultural morality rejects rules against
theft, promise-breaking, or killing. Rather, investigators study what particular societies consider to be theft,
promise-breaking, and killing; how they handle exceptive cases; and the like.
Some critics of our common-morality thesis claim that anthropological and historical evidence already speaks
against the empirical hypothesis that is assumed in the claim that a universal morality exists.59 However, these
critics seem not to appreciate the nuances that surround the design of empirical research that would test
hypotheses about the common morality. In principle, scientific research could either confirm or falsify the
hypothesis that there exist a number of universal principles and rules of common morality. Such research would
state which hypotheses are to be tested, how to formulate inclusion/exclusion criteria for study subjects, and why
these hypotheses and criteria were selected. To date, critics who argue that available empirical studies falsify
common-morality claims have not attended to the possibility that the common morality can be scientifically
investigated, including by a testing of hypotheses.
The primary hypothesis that we propose for empirical testing is this: All persons committed to morality in their
moral assessments accept at least the norms that we have claimed to be central to the common morality. The
persons to be selected for inclusion in a study that investigates this hypothesis are (1) persons who pass a
rigorous test of whether their beliefs include one identified considered moral judgment (to be stated in the study
protocol), and (2) persons who are determined to take the moral point of view.60
We acknowledge that it would be difficult to design this empirical inquiry, but the goal is achievable despite
problems of either missing the target (namely, the general moral beliefs of all and only those committed to
morality) or begging the question by insisting on studying only persons known to accept what we have said
about the common morality. The question could be begged either by (1) designing the study so that the only
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persons tested are those who already have the commitments and beliefs the investigator is testing for (e.g., by
presupposing our four clusters of principles) or (2) designing the study so that all persons are tested whether or
not they are committed to moral norms. The first design risks biasing the study in favor of the hypothesis that a
common morality exists. The second design risks biasing the study against this hypothesis.
These problems in research design are formidable, but not insurmountable. We have defined the common
morality in terms of “the set of norms shared by all persons committed to morality.” Some persons are
committed to morality but do not always behave in accordance with their commitments; other persons are not
committed to morality at all.61 Persons who are not committed to morality do not fall within the scope of our
claims and could not appropriately be included as subjects in an empirical study. Some might conclude that we
have constructed a circular and self-justifying position. They might say that we are defining the common
morality in terms of a certain moral commitment and then allowing only those who accept the norms we have
identified to qualify as persons committed to morality. We appreciate that our position risks stipulating the
content of “morality,” but this risk should be manageable through careful research design. Here we provide only
a basic outline of one design that would manage this risk and would allow the research to support or to falsify
our hypothesis.
In a proper methodology, an investigation would include only persons who have already been screened to ensure
that they are committed to some one norm of morality that is reasonable to expect all morally committed persons
to accept. We suggest that a reasonable such principle is the principle of nonmaleficence, as it is unimaginable
that any morally committed person would reject this general principle. Acceptance of this principle could serve
as an inclusion criterion, and nonacceptance as an exclusion criterion. This choice of a single general norm does
not bias the study because it does not preselect study subjects for their beliefs in any of the several other norms
we have hypothesized to be central to the common morality. The group of persons to be tested would not be
screened by presupposing any norm other than nonmaleficence. Persons not committed to the principle of
nonmaleficence would be excluded from the group of study subjects.
The purpose of this study is to determine whether cultural or individual differences emerge in the included group
over the acceptance of moral norms concerned with respect for autonomy, beneficence, justice, and other
hypothesized norms in the common morality including promise-keeping, truth-telling, helping incompetent
persons, respecting confidentiality, protecting severely vulnerable persons, and so forth. The research design
could also test whether various norms are universally held that we have not even considered to be universal.
Should it turn out that the persons studied do not share the norms we hypothesize to be in the common morality,
the research would show that there is no common morality of the sort we have envisioned, and our hypothesis
would be falsified, or at least would require significant revision.62 If norms other than the ones we have
mentioned were demonstrated to be shared across the subjects tested, this finding would yield insights about the
breadth of the common morality beyond our formulation.
Regarding the threat of circularity in our structuring of this research, we propose the following way to avoid it. If
we limit the participants in the research to persons who have a moral commitment to the principle of
nonmaleficence, then we could not assert that this empirical study could validly reach the conclusion that no
moral norms whatever were found in common across cultures; the presupposed commitment to nonmaleficence
ensures that this one norm is held in common among research participants. However, the methodology would
not be fatally flawed by this finding. If no moral norms were found in this research to be held in common across
cultures—other than the principle of nonmaleficence, which was presumed in the selection of subjects—then the
general hypothesis that a common morality of the sort we have postulated would be thrown into serious doubt.
To boldly generalize, what this study might validly show is either (1) that there is no common morality of the
sort we have envisaged or (2) that some set of identifiable moral norms is held in common in addition to the
assumed principle of nonmaleficence. If (2) were demonstrated, the identified set of norms would presumably
constitute at least some part of the common morality (although perhaps not its complete set of norms).
We do not claim that empirical confirmation of the hypothesis that such a set of norms of common morality
exists constitutes a normative justification of these norms of the common morality. Exclusively empirical
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findings do not yield a normative justification. However, empirical findings can assist us in using the method of
reflective equilibrium defended earlier in this chapter—in particular, “wide reflective equilibrium.” There we
were concerned with how to control for bias and lack of objectivity in the choice of considered judgments. One
way to control for bias is to collect information about what is widely, preferably universally, agreed to be
correct. This information could then be appropriately employed in attempts to reach reflective equilibrium.
Disputed or unshared judgments are not well-positioned to qualify as considered judgments, whereas widely
shared agreement is a relevant consideration. Shared agreement helps sustain claims about what qualifies as a
body of considered judgments. Findings of universally shared agreement can, in this regard, be made integral to
the justificatory process even though the collected information is empirical rather than normative.
Empirical information about commonly held norms can in this way contribute to the process of normative
justification. With this caveat, we turn to nonempirical methods of normative theoretical justification.
Normative theoretical justification. Neither historical facts, such as facts about the history and traditions of
medical ethics, nor social science facts of the sort envisaged in the previous section serve directly to justify
moral norms. In Chapter 9 we discussed criteria of normative theories and the approach to justification taken by
four different types of theory. Utilitarian theories, Kantian theories, rights theories, and virtue theories, among
others, could be employed to provide a theoretical justification of the norms of the common morality. We argued
that the norms supported in these theories tend to converge to the acceptance of the norms of the common
morality, but, at the same time, that establishing this convergence does not amount to a moral justification.
Establishing convergence in types of philosophical theories is an empirical demonstration, not a normative one.
What, then, can be said in support of a normative justification of common morality theory? Earlier in the present
chapter we discussed Bernard Gert’s attempts to justify the common morality in his books Morality: Its Nature
and Justification and Common Morality: Deciding What to Do. Gert has shown that there is no reason why the
norms in the common morality cannot be justified by a general ethical theory. We do not suggest that he has
conclusively demonstrated that his particular ethical theory is correct; we claim only that he has shown that a
normative ethical theory can be put to the work of justifying the norms of the common morality. Gert rightly
says that his account of ethics does not make “empirical claims about morality,” but rather provides justification
of the substantive norms that constitute the common morality.63
In Gert’s theory, common morality is justified on the basis of rationality. He regards it as clear to all rational
persons that we should not act irrationally because irrational actions are those that should not be performed:
Rational persons want to avoid death, pain, disability, loss of freedom, and loss of pleasure, and they
know not only that they are fallible and vulnerable but that they can be deceived and harmed by
other people. They know that if people do not act morally with regard to them, they will be at
significantly increased risk of suffering some harm. If they use only rationally required beliefs, it
would be irrational not to endorse common morality as the system to be adopted to govern the
behavior of all moral agents.64
Acting irrationally bears a close relationship to acting in ways that will increase the likelihood of certain basic
harms, and Gert argues that the goal of the moral rules is to prohibit causing these harms or contributing to
conditions that cause them.65
Ethical theories other than Gert’s and other than the four types discussed in Chapter 9 also might be employed to
justify the common morality. For example, pragmatism is a type of theory that could be adapted to this
purpose.66 Pragmatic justification holds that moral norms are justified by their effectiveness in achieving the
object of morality. Once we identify an operative purpose or objective of an institution or system of thought (in
this case, the institution of morality), we can vindicate a set of standards if it is better for reaching the identified
objectives than any alternative set of standards. For example, a pragmatist could hold that the goal or object of
morality is to promote human flourishing by counteracting conditions that worsen the quality of people’s lives
and might argue that the norms of the common morality are the best instrument to combat these conditions. A set
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of norms is pragmatically justified if and only if this set is the best way to promote human flourishing when all
factors—including human limitations, shortcomings, and vulnerabilities—are taken into consideration.67
We will not here attempt a justification of the pertinent moral norms of the common morality by appeal to a
particular type of general ethical theory such as Gert’s or, alternatively, pragmatism, but we encourage these
theoretical endeavors. Our aim in this brief subsection is modest. We have shown only that such theories have
been and can be constructed and, if successful, they would normatively justify the norms of the common
morality.
Conceptual justification.68 In Chapter 1 we discussed the importance in metaethics of conceptual analyses of
normative notions such as right, obligation, virtue, justification, and responsibility. The concept of morality is
clearly connected to normative notions. We will here defend the view that the concept of morality contains
normativity not only in the sense that this concept requires some action-guiding norms but also in the sense that
it contains certain specific moral norms—that is, a body of norms in morality in the normative sense. No system
of belief lacking these specific norms counts as morality, and if someone claimed that a system without these
common-morality norms counts as morality, the claim should be rejected as conceptually mistaken.
Philippa Foot defends such a claim in a celebrated essay:
A moral system seems necessarily to be one aimed at removing particular dangers and securing
certain benefits, and it would follow that some things do and some do not count as objections to a
line of conduct from a moral point of view. … [T]here are starting-points … fixed by the concept of
morality. We might call them “definitional criteria” of moral good and evil, so long as it is clear that
they belong to the concept of morality—to the definition and not to some definition which a man
can choose for himself. What we say about such definitional criteria will be objectively true or false.
…
[I]t does not follow that we can settle all moral questions in this [definitional] way. … [T]he concept
of morality while it fixes a great deal also leaves quite a lot open.69
We agree with Foot’s position that certain norms are essential to the concept of morality and are starting-points,
fixed by the concept, that state what is objectively correct. Critical principles, rules, rights, and virtues should be
included as “fixing a great deal.” These norms are essential to any system of moral norms. By contrast, some
norms that are referred to as “moral,” such as norms that reject human rights, are external to, and their content
excluded by, the normative concept of morality, even though “morality” is commonly used in this way in both
metaethics and the social and behavioral sciences. In the purely descriptive sense, “morality” refers to a group’s
codes of conduct or to individuals’ important beliefs and attitudes about their conduct. There are plural
descriptive “moralities,” and their content and standards can differ greatly. However, accurate reports of morality
in the descriptive sense have no implications for how all persons should behave, whereas in a normative sense of
“morality” some actions are universally immoral and others universally morally required.70
The norms internal to morality in the normative sense are indispensable points of reference without which we
could not get our moral bearings. As we have occasionally said about the four clusters of principles that provide
the framework of norms in this book, they are starting points having a secure place in the common morality. One
way of understanding this claim (and also a way of understanding our agreement with both Foot and Gert) is that
these anchoring norms are crucial elements of the concept of morality, whereas the distinctive norms in
particular moralities are not essential even though they might be entirely coherent with the common morality. By
contrast, some “moralities” depicted in historical and social scientific literature may contain practices that
contradict norms of morality in the normative sense—for example, a so-called medical morality of not reporting
harmful medical errors to hospital administrators or patients. Such a “morality” is no more than a body of
indefensible customs.
We do not claim that our four clusters of principles form the conceptual heart of the common morality in a way
that other principles, rules, rights, and virtues do not. Our claim is merely that we draw from the common
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morality to formulate the principles of biomedical ethics in our book. The two italicized parts of this sentence are
critical: Unlike Gert, we do not claim to have removed the veil from the full set of norms that constitute the
common morality. The norms in the common morality undoubtedly reach out beyond the principles and rules on
which we concentrate. Put another way, we do not claim that our principles and rules exhaust the norms in the
common morality. For instance, what we said in Chapters 1 and 2 about the virtues recognizes their secure place
in the common morality.71 Second, we claim for our framework of four clusters of principles only that these
principles are well suited as a general framework of starting points for biomedical ethics. We do not claim more.
If this line of argument is cogent, it is a conceptual mistake, when using “morality” in the normative sense, to
assert that morality allows persons to trade in slaves, coerce persons to be subjects in high-risk biomedical
experimentation, or conceal harmful medical errors. The proposition that such practices are permissible might
correctly characterize the beliefs of certain groups when “morality” is used in a descriptive sense, but it is
conceptually incorrect of “morality” in the normative sense. Likewise, the proposition that “lying is always
morally permissible” is an unacceptable general norm, even though “lying is not permissible” is only a prima
facie rule that can sometimes be justifiably overridden. The fact that lying is sometimes justified does not entail
that the rule “Lying is not permissible” is not a conceptually central norm of morality in the normative sense.
An example of these problems appears in the moral vices briefly mentioned in Chapters 1, 2, and 9, such as
malevolence, dishonesty, lack of integrity, and cruelty. In morality in the normative sense these character traits
are excluded from the domain of the morally acceptable, even though they too are not absolute vices. There may
be rare circumstances in which dishonesty is appropriate, as with lying. Similarly, rules that disallow causing
suffering to others are excluded. Each of these norms is prima facie rather than unconditionally wrong.
Adequate defense of these claims would require more extensive analysis of the concept of morality than we can
undertake here. It would not be enough to argue that morality is the social institution that functions to ameliorate
or counteract the tendency for things to go badly in human relationships. Morality would also have to be shown
to be more than taking what some philosophers have called “the moral point of view”—that is, taking a view
with a certain moral attitude such as compassion. These approaches have often not adequately been captured in
the concept of morality in the normative sense.72
Moral pluralists may claim that there are multiple concepts of morality in the normative sense, but moral
pluralism is a group-relative notion best interpreted as a version of “morality” in the descriptive sense. It would
be incoherent to formulate the normative meaning of the term morality as consisting of the norms of multiple
moralities, because contradictory advice would be given. One could deny that the term morality is univocal and
then formulate two or more normative senses of morality (ns1, ns2, etc.), each with a different set of substantive
norms, just as we can distinguish descriptive and normative senses. However, this maneuver is the functional
equivalent of analyzing “morality” descriptively, not normatively.
In line with our arguments in Chapter 9 about convergence in moral theory, we caution against a vision of
differences in moral theories as amounting to a pluralism of theory. These theoretical disagreements are usually
about the foundations of morality. Theorists tend to assume the acceptability of, rather than disagree about, core
moral norms such as not breaking promises, not harming others, and respecting autonomous choice.73 Put
another way, philosophers with different conceptions of the theoretical justification of universal morality tend
not to disagree significantly on the substantive norms that comprise morality in the normative sense, despite
their disagreements about theoretical foundations.
Problems for Common-Morality Theory
Our account of the common morality leaves unsettled problems that would have to be addressed to provide a
complete account. Three questions deserve more attention than they can receive here.
Specification and judgment. First, do specified principles enable us to reach practical judgments, or are they too
indeterminate to generate such judgments? Our theory requires that we specify to escape abstract
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indeterminateness and reduce conflicts in order to provide more precise action-guiding content, but a danger
exists of overspecifying a principle or rule, thereby leaving insufficient room for deliberation, judgment, and
balancing of norms in some circumstances. Balancing judgments in concrete circumstances can be as important
for moral thinking as specification.
However, without tighter controls on both permissible balancing and permissible specification, critics will say
that too much room remains for moral judgments that are not adequately justified and yet are sanctioned or
permitted by the theory. Questions that remain include, “Can the conditions intended to structure and constrain
balancing that we presented in Chapter 1 reduce raw intuition to an acceptable level?” and “Can the constraints
of our proposals about justification be tightened to respond to these concerns?”
Coherence in the common morality? We have linked reflective equilibrium to a common-morality theory and
have attempted to integrate them as an approach to method and justification in ethics. But is it reasonable to
expect that the common morality itself is coherent? If one argues, as we do, that a heap of obligations and values
unconnected by a single first principle comprises the common morality, is it possible to show that morality is
coherent (or is there a way of recasting it into coherence) without radically reconstructing norms so that they
only vaguely resemble the norms that we claim in this book to be drawn from the common morality?
Theory construction. The language of “common-morality theory” suggests that an ethical theory can be
constructed that is based only on norms drawn from the common morality. Is there good reason to believe that a
theory—not merely a loosely connected collection of principles and rules—is possible? Perhaps general
principles and rules, standards of moral virtues, and statements of human rights are all that we should aspire to,
rather than a theory that conforms to the criteria of theories delineated at the beginning of Chapter 9. Perhaps
“ethical theory” has been so diluted in meaning in the case of “common-morality theories” that we should
abandon the goal of a theory.
In part, these problems turn on different expectations for a “theory.” Gert and Clouser expect a strong measure of
unity and systematic connection among rules and moral ideals, a clear pattern of justification, and a practical
decision procedure that flows from a theory, whereas other philosophers are skeptical of one or more of these
conditions, and even of the language of “theory.”74 We have encouraged moral theory in this chapter, as in
Chapters 1, 2, and 9; but we have cautioned against expecting too much from ethical theories in the way of
systematic tidiness and action guidance. No available ethical theory will eliminate the importance of
specification, balancing, and reaching for reflective equilibrium as aids in practical ethics.
CONCLUSION
The model of working “down” by applying theories or principles to cases has attracted many who work in
biomedical ethics, but we have argued that this model needs to be replaced or at least buttressed by the method
of reflective equilibrium. We have also argued that we have reason to trust norms in the common morality more
than the abstract norms often found in general theories. Ethical theories should not be expected to yield specific
rules or judgments capable of resolving all contingent moral conflicts. No theory has such power. Nonetheless,
we have not defended a so-called antitheoretical position. We have encouraged moral reflection of several types,
including the development of moral theories as ways to discover and analyze the common morality and to
determine the place of principles, rules, rights, and virtues in biomedical ethics.
Our theory of a framework of principles is committed to a global bioethics by presenting universally binding
norms that constitute ineliminable starting points for determining what is ethically acceptable in all societies.
This theory rejects the hypothesis that morality is ultimately reducible to local, customary, or cultural rules. It
nonetheless remains sensitive to the need for particular moralities to be fashioned for groups with legitimate
reasons for having their own specific rules for research and practice in medicine, health care, and public health.
NOTES
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1. 1. U.S. Supreme Court, United Automobile Workers v. Johnson Controls, Inc., 499 U.S. 187 (1991);
argued October 10, 1990; decided March 20, 1991.
2. 2. K. Danner Clouser and Bernard Gert, “A Critique of Principlism,” Journal of Medicine and Philosophy
15 (April 1990): 219–36. This article, and others that followed it, defend Gert’s ethical theory as presented
in his book Morality: Its Nature and Justification, 2nd rev. ed. (New York: Oxford University Press,
2005). See also Gert’s Common Morality: Deciding What to Do (New York: Oxford University Press,
2004); and Gert, Charles M. Culver, and Clouser, Bioethics: A Return to Fundamentals (New York:
Oxford University Press, 1997), and the second edition, retitled Bioethics: A Systematic Approach (New
York: Oxford University Press, 2006). Both contain sustained criticisms of our views. However, Gert,
Culver, and Clouser accept, in our judgment, both the language of the common morality and a conception
of it less dissimilar to ours than might appear at first glance, even though the remaining differences are
substantial. Their first publication specifically mentioning the subject of “common morality” was Clouser,
“Common Morality as an Alternative to Principlism,” Kennedy Institute of Ethics Journal 5 (1995): 219–
36. See further Tom L. Beauchamp, “Principlism and Its Alleged Competitors,” Kennedy Institute of
Ethics Journal 5 (1995): 181–98; and Gert, Culver, and Clouser, “Common Morality versus Specified
Principlism: Reply to Richardson,” Journal of Medicine and Philosophy 25 (2000): 308–22. For critical
assessments of Gert’s moral theory, see Robert Audi and Walter Sinnott-Armstrong, eds., Rationality,
Rules, and Ideals: Critical Essays on Bernard Gert’s Moral Theory (Lanham, MD: Rowman & Littlefield,
2002); and Carson Strong, “Gert’s Theory of Common Morality,” Metaphilosophy 38 (2007): 535–45.
3. 3. By limiting our assessments we are unable to present the full dimensions of the top-down ethical theory
developed by Gert, which he and his colleagues refer to as “morality as a public system.” Gert’s books
present clear expositions of this theory. Gert has told us in private conversation that he takes “the whole
public system” to constitute morality, and so to be within the scope of his moral theory. He emphasizes
that he does not want his theory to be interpreted as reducible to normative statements of obligation (the
moral rules) or top-down rules.
For Gert and his colleagues’ several discussions of principlism, see Clouser and Gert, “A Critique of
Principlism”; Gert and Clouser, “Morality vs. Principlism,” in Principles of Health Care Ethics, ed.
Raanan Gillon and Ann Lloyd (Chichester, England: Wiley, 1994), pp. 251–66; Gert, Culver, and Clouser,
Bioethics: A Systematic Approach, chap. 5; and Clouser and Gert, “Concerning Principlism and Its
Defenders: Reply to Beauchamp and Veatch,” in Building Bioethics: Conversations with Clouser and
Friends on Medical Ethics, ed. Loretta M. Kopelman (Boston: Kluwer, 2002), pp. 183–99.
For our view of the best way to understand the term “Principlism,” see Tom L. Beauchamp and Oliver
Rauprich, “Principlism,” in Encyclopedia of Global Bioethics, ed. Henk ten Have (Switzerland: Springer
Reference Series, 2016).
4. 4. Gert, Culver, and Clouser, Bioethics: A Systematic Approach, pp. 11–14, 32ff, passim.
5. 5. Gert and associates, like us, appeal to a relatively small number of norms drawn from the common
morality. See Gert, Culver, and Clouser, Bioethics: A Systematic Approach, pp. 22–23, 34–36. We find
their 9th and 10th rules to be too vague, general, and difficult to specify—roughly the problems they
report they find about the principles in our theory.
6. 6. Gert has maintained in private conversation with us that once our principles are interpreted as normative
headings under which rules fall, they become unobjectionable, but they also become expendable as mere
classification systems. His published view is that “if specified principlism develops properly, it will
become our account.” See Gert, Culver, and Clouser, Bioethics: A Return to Fundamentals, p. 90. See also
a clarification and partial retraction of their earlier criticisms of our position, in Clouser and Gert,
“Concerning Principlism and Its Defenders: Reply to Beauchamp and Veatch,” pp. 190–91.
7. 7. For a proposed method to handle this problem, see Gert, Culver, and Clouser, Bioethics: A Systematic
Approach, pp. 27–32, 38–42, 83–87; and “Morality vs. Principlism,” pp. 261–63. For relevant criticism of
their claims, see Henry Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,”
Journal of Medicine and Philosophy 25 (2000): 285–307, esp. 293–97, which also appears in a revised
version in Belmont Revisited: Ethical Principles for Research with Human Subjects, ed. James F.
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Childress, Eric M. Meslin, and Harold T. Shapiro (Washington, DC: Georgetown University Press, 2005),
pp. 205–27.
8. 8. Thomas Nagel, Mortal Questions (Cambridge: Cambridge University Press, 1979), pp. 128–37; and W.
D. Ross, The Right and the Good (Oxford: Clarendon, 1930; reprinted Indianapolis, IN: Hackett, 1988).
For a discussion of Ross’s position, see David McNaughton, “An Unconnected Heap of Duties?” The
Philosophical Quarterly 46, no. 185 (October 1996): 434–47.
9. 9. See, further, Michael Quante and Andreas Vieth, “Defending Principlism Well Understood,” Journal of
Medicine and Philosophy 27 (2002): 621–49.
10. 10. Gert, Culver, and Clouser, Bioethics: A Systematic Approach, pp. 11–13.
11. 11. Gert, Morality: A New Justification of the Moral Rules (New York: Oxford University Press, 1988),
pp. 154–55.
12. 12. Cf. Gert, Culver, and Clouser, Bioethics: A Systematic Approach, pp. 89–93; and the formulation in
Clouser and Gert, “Concerning Principlism and Its Defenders: Reply to Beauchamp and Veatch,” pp. 190–
91.
13. 13. See Gert and Culver, “The Justification of Paternalism,” Ethics 89 (1979): 199–210; for additional
critique, see James F. Childress, Who Should Decide? Paternalism in Health Care (New York: Oxford
University Press, 1982), pp. 237–41. See also the later statements of their position on paternalism in Gert,
Culver, and Clouser, Bioethics: A Return to Fundamentals, chap. 10, “Paternalism,” and Bioethics, A
Systematic Approach, chap. 10, “Paternalism and its Justification.” These chapters differ in several
respects.
14. 14. There are good reasons to believe that this paternalistic provision of a blood transfusion against a
patient’s oral directive, made while competent (if, indeed, he was competent), was wrong, but we set this
complicated problem aside here. (See our discussion of paternalism in Chapter 6.)
15. 15. See, for example, Gert, Culver, and Clouser, Bioethics: A Systematic Approach, p. 36. A discussion of
this shift in their interpretation of the rule not to deprive others of freedom, in part to address the
Jehovah’s Witness case and other cases, appears in their Bioethics: A Return to Fundamentals, p. 210,
where they write: “In our previous discussion of the blood transfusion case … we did not realize that the
doctor violated the patient’s freedom, for we limited depriving of freedom to attempting to control
behavior. We now realize that someone can deprive another of freedom by taking away control of what
touches or goes into his body.”
16. 16. See the comments, formulations, and frameworks in John D. Arras, “Pragmatism in Bioethics: Been
There, Done That,” Social Philosophy and Policy 19 (2002): 29–58; Arras, “Freestanding Pragmatism in
Law and Bioethics,” Theoretical Medicine 22 (2001): 69–85; these two essays by Arras have been
incorporated with revisions into Arras, Methods in Bioethics: The Way We Reason Now, edited by James
Childress and Matthew Adams (New York: Oxford University Press, 2017), chaps. 5 and 6; Henry
Richardson, “Beyond Good and Right: Toward a Constructive Ethical Pragmatism,” Philosophy & Public
Affairs 24 (1995): 108–41; Joseph J. Fins, Franklin G. Miller, and Matthew D. Bacchetta, “Clinical
Pragmatism: A Method of Moral Problem Solving,” Kennedy Institute of Ethics Journal 7 (1997): 129–45;
and Heike Schmidt-Felzmann, “Pragmatic Principles—Methodological Pragmatism in the Principle-Based
Approach to Bioethics,” Journal of Medicine and Philosophy 28 (2003): 581–96.
17. 17. See Alisa L. Carse, “Impartial Principle and Moral Context: Securing a Place for the Particular in
Ethical Theory,” Journal of Medicine and Philosophy 23 (1998): 153–69; Daniel Callahan, “Universalism
& Particularism: Fighting to a Draw,” Hastings Center Report 30 (2000): 37–44; and Earl Winkler,
“Moral Philosophy and Bioethics: Contextualism vs. the Paradigm Theory,” in Philosophical Perspectives
on Bioethics, ed. L. W. Sumner and Joseph Boyle (Toronto: University of Toronto Press, 1996), pp. 50–78.
18. 18. For interpretations, defenses, and critiques of narrative approaches used in bioethics, see Rita Charon,
“Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust,” JAMA: Journal of the
American Medical Association 286 (2001): 1897–1902; Charon, Narrative Medicine: Honoring the
Stories of Illness (New York: Oxford University Press, 2006); Charon et al., The Principles and Practice
of Narrative Medicine (New York: Oxford University Press, 2017), esp. chap. 5, “Deliver Us from
Certainty: Training for Narrative Ethics” by Craig Irving and Rita Charon; Charon and Martha Montello,
Stories Matter: The Role of Narrative in Medical Ethics (New York: Routledge, 2002); Hilde Lindemann
Nelson, ed., Stories and Their Limits: Narrative Approaches to Bioethics (New York: Routledge, 1997),
which includes Howard Brody, “Who Gets to Tell the Story? Narrative in Postmodern Bioethics,” chap. 2,
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and John Arras, “Nice Story, but So What? Narrative and Justification in Ethics,” chap. 5, the latter of
which appears in revised form in Arras, Methods in Bioethics, ed. Childress and Adams, chap. 4; Joan
McCarthy, “Principlism or Narrative Ethics: Must We Choose between Them?,” Medical Humanities 29
(2004): 65–71; and Anne Hudson Jones, “Narrative in Medical Ethics,” British Medical Journal 318
(January 23, 1999): 253–56.
19. 19. In the matter of Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied, 429 U.S. 922 (1976).
20. 20. See Albert R. Jonsen and Stephen Toulmin, The Abuse of Casuistry: A History of Moral Reasoning
(Berkeley: University of California Press, 1988); Baruch A. Brody, “A Historical Introduction to Jewish
Casuistry on Suicide and Euthanasia,” in Brody, ed., Suicide and Euthanasia: Historical and
Contemporary Themes (Netherlands: Spring, 1989); John D. Arras, “Getting Down to Cases: The Revival
of Casuistry in Bioethics,” Journal of Medicine and Philosophy 16 (1991): 29–51, reprinted in revised
form in Arras, Methods in Bioethics, ed. Childress and Adams, chap. 3; Carson Strong, “Specified
Principlism: What Is It, and Does It Really Resolve Cases Better than Casuistry?” Journal of Medicine
and Philosophy 25 (2000): 323–41; and Strong, “Critiques of Casuistry and Why They Are Mistaken,”
Theoretical Medicine and Bioethics 20 (1999): 395–411.
21. 21. Casuists have had relatively little to say about the nature or definition of a “case,” or about the precise
meaning of the term casuistry, but see Albert R. Jonsen, “Casuistry and Clinical Ethics,” in Methods in
Medical Ethics, 2nd ed., ed. Jeremy Sugarman and Daniel P. Sulmasy (Washington, DC: Georgetown
University Press, 2010), pp. 110–11, 119; and Albert R. Jonsen, Mark Siegler, and William J. Winslade,
Clinical Ethics, 8th ed. (New York: McGraw-Hill, 2015). The latter does not claim to be a work of
casuistry, but its use of cases in clinical ethics is instructive.
22. 22. See, for example, the important statement by Jonsen in “Casuistry: An Alternative or Complement to
Principles?” Journal of the Kennedy Institute of Ethics 5 (1995), esp. 246–47; see further Jonsen, “Strong
on Specification,” Journal of Medicine and Philosophy 25 (2000): 348–60, and Jonsen, “Morally
Appreciated Circumstances: A Theoretical Problem for Casuistry,” in Philosophical Perspectives on
Bioethics, ed. Sumner and Boyle, pp. 37–49. See also the analysis and assessment of casuistry in James F.
Childress, Practical Reasoning in Bioethics (Bloomington: Indiana University Press, 1997), chap. 2,
“Ethical Theories, Principles, and Casuistry in Bioethics: An Interpretation and Defense of Principlism.”
23. 23. The following are two major sources of claims in ethical theory to have a unified theory of the sort
casuists presumably would disparage (these examples are ours, not ones selected by casuists): (1) Jeremy
Bentham: “From utility then we may denominate a principle, that may serve to preside over and govern …
several institutions or combinations of institutions that compose the matter of this science.” A Fragment
on Government, ed. J. H. Burns and H. L. A. Hart (London: Athlone Press, 1977), p. 416. (2) Henry
Sidgwick: “Utilitarianism may be presented as [a] scientifically complete and systematically reflective
form of th[e] regulation of conduct.” Methods of Ethics (Indianapolis, IN: Hackett, 1981), bk. 4, chap. 3, §
1, p. 425.
24. 24. Stephen Toulmin, “The Tyranny of Principles,” Hastings Center Report 11 (December 1981): 31–39.
See further Toulmin’s articles “How Medicine Saved the Life of Ethics,” Perspectives in Biology and
Medicine 25 (1982): 736–50; and “The Recovery of Practical Philosophy,” American Scholar 57 (1988):
337–52. See additionally, at a high level of theory, F. M. (Frances Myrna) Kamm, Bioethical
Prescriptions: To Create, End, Choose, and Improve Lives (Oxford: Oxford University Press, 2013).
25. 25. Jonsen and Toulmin, Abuse of Casuistry, pp. 16–19.
26. 26. See National Commission for the Protection of Human Subjects of Biomedical and Behavioral
Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of
Research (Washington, DC: DHEW Publication OS 78–0012, 1978); Childress, Meslin, and Shapiro, eds.,
Belmont Revisited: Ethical Principles for Research with Human Subjects; and Tom L. Beauchamp,
Standing on Principles: Collected Essays (New York: Oxford University Press, 2010), chaps. 1–2.
27. 27. In addition to Abuse of Casuistry, see Jonsen’s views on principles in “Casuistry and Clinical Ethics,”
pp. 112–18; and Toulmin, “The National Commission on Human Experimentation: Procedures and
Outcomes,” in Scientific Controversies: Case Studies in the Resolution and Closure of Disputes in Science
and Technology, ed. H. Tristram Engelhardt, Jr., and Arthur Caplan (New York: Cambridge University
Press, 1987), pp. 599–613.
28. 28. See Arras, “Getting Down to Cases: The Revival of Casuistry in Bioethics,” pp. 31–33, reprinted in
revised form in Arras, Methods in Bioethics, ed. Childress and Adams, pp. 45–51; and Jonsen and
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Toulmin, Abuse of Casuistry, pp. 16–19, 66–67.
29. 29. Carson Strong is a striking example, beginning with his “Specified Principlism” in 2000, esp. p. 337.
His theses now incorporate both principles and common morality; see especially his “Theoretical and
Practical Problems with Wide Reflective Equilibrium in Bioethics,” Theoretical Medicine and Bioethics
31 (2010): 123–40. Also notably accommodating to principles is Jonsen’s “Casuistry and Clinical Ethics,”
esp. p. 120, where he says that casuistry “does not deny that certain methodological moves in moral theory
might be quite relevant to casuistic thinking, such as the reflective equilibrium and specification
methods.” This accommodating, sometimes integrative, approach to casuistry and principles arguably
began as early as Arras’s 1991 article “Getting Down to Cases: The Revival of Casuistry in Bioethics,”
and was solidified in Jonsen’s 1995 article, “Casuistry: An Alternative or Complement to Principles?” esp.
pp. 248–49.
30. 30. Jonsen, “Casuistry as Methodology in Clinical Ethics,” p. 298.
31. 31. Jonsen, “Casuistry and Clinical Ethics,” p. 119.
32. 32. See, particularly, Tod Chambers, The Fiction of Bioethics: Cases as Literary Texts (New York:
Routledge, 1999); and Chambers, “The Fiction of Bioethics: A Precís,” American Journal of Bioethics 1,
no. 1 (2001): 40–43, which focuses on and criticizes the ways many cases are used in bioethics. See, in
response, James F. Childress, “Case Narratives and Moral Perspectives: An Appreciative Response to
Chambers,” American Journal of Bioethics 1, no. 1 (2001): 57–59, as well as responses by a number of
other scholars in the same issue. See also Childress, “Narratives versus Norms: A Misplaced Debate in
Bioethics?” in Stories and Their Limits: Narrative Approaches to Bioethics, ed. Nelson, chap. 17. For
related problems of paradigm cases and ways to make casuistry effective in practice, see Annette
Braunack-Meyer, “Casuistry as Bioethical Method: An Alternative Perspective,” Social Science and
Medicine 53 (2001): 71–81.
33. 33. Anonymous, “It’s Over, Debbie,” Journal of the American Medical Association 259, no. 2 (1988):
272.
34. 34. Jonsen, “Casuistry as Methodology in Clinical Ethics.”
35. 35. J. K. Kaufert and T. Koch, “Disability or End-of-Life: Competing Narratives in Bioethics,”
Theoretical Medicine and Bioethics 24 (2003): 459–69.
36. 36. Kaufert and Koch, “Disability or End-of-Life,” p. 462.
37. 37. Arras, “Getting Down to Cases.”
38. 38. Loretta Kopelman, “Case Method and Casuistry: The Problem of Bias,” Theoretical Medicine 15
(1994): 21–37, at 21.
39. 39. See Cass Sunstein, “On Analogical Reasoning,” Harvard Law Review 106 (1993): 741–91, esp. 767–
78; Kopelman, “Case Method and Casuistry”; Arras, “Getting Down to Cases”; Kevin Wildes, Moral
Acquaintances: Methodology in Bioethics (Notre Dame, IN: University of Notre Dame, 2000), chaps. 3–4;
and Mark G. Kuczewski, Fragmentation and Consensus: Communitarian and Casuistic Bioethics
(Washington, DC: Georgetown University Press, 1997).
40. 40. For additional criticisms of casuistry, see Tom Tomlinson, Methods in Medical Ethics: Critical
Perspectives (New York, Oxford University Press, 2012), chap. 4 (“Casuistry: Ruled by Cases”); and John
Arras, “Theory and Bioethics,” Stanford Encyclopedia of Philosophy (Winter 2016 Edition; first published
2010), ed. Edward N. Zalta, available at https://plato.stanford.edu/archives/win2016/entries/theory-
bioethics/ (retrieved April 27, 2018).
41. 41. See John Arras, “A Case Approach,” in A Companion to Bioethics, ed. Helga Kuhse and Peter Singer
(Oxford: Blackwell, 1998), pp. 106–13, esp. 112–13.
42. 42. Jonsen, “Casuistry: An Alternative or Complement to Principles?” pp. 246–47.
43. 43. John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 1971; rev. ed., 1999),
esp. pp. 20ff, 46–50, 579–80 (1999: 17ff, 40–45, 508–9). See also Rawls’s comments on reflective
equilibrium in Political Liberalism (New York: Columbia University Press, 1996), esp. pp. 8, 381, 384,
and 399.
44. 44. Rawls, “The Independence of Moral Theory,” Proceedings and Addresses of the American
Philosophical Association 48 (1974–75): 8; and, more generally, Rawls, “Outline of a Decision Procedure
for Ethics,” Philosophical Review 60 (1951): 177–97.
45. 45. Compare the conclusions in Richardson, “Specifying, Balancing, and Interpreting Bioethical
Principles,” p. 302.
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46. 46. Norman Daniels, “Wide Reflective Equilibrium in Practice,” in Philosophical Perspectives on
Bioethics, ed. Sumner and Boyle, pp. 96–114; Daniels, Justice and Justification: Reflective Equilibrium in
Theory and Practice (New York: Cambridge University Press, 1996); Daniels, “Reflective Equilibrium,”
Stanford Encyclopedia of Philosophy, section 3, revision of October 2016 (first published April 28, 2003),
available at https://plato.stanford.edu/entries/reflective-equilibrium/ (accessed March 21, 2018); Jeffrey
Brand-Ballard, “Consistency, Common Morality, and Reflective Equilibrium,” Kennedy Institute of Ethics
Journal 13 (2003): 231–58; and Owen J. Flanagan, The Geography of Morals: Varieties of Moral
Possibility (New York: Oxford University Press, 2017), pp. 123–27 (on “superwide reflective
equilibrium”).
47. 47. Rawls, A Theory of Justice, pp. 195–201 (rev. ed., 1999: 171–76).
48. 48. DeGrazia, “Common Morality, Coherence, and the Principles of Biomedical Ethics,” Kennedy
Institute of Ethics Journal 13 (2003): 219–30, esp. 226.
49. 49. Circa 1640. Published 1974 by Historical Documents Co., available at
http://www.jollyrogercayman.com/web%20pages/pirates_creed.htm (accessed August 17, 2007).
50. 50. For these and related problems, see John D. Arras, “The Way We Reason Now: Reflective Equilibrium
in Bioethics,” in The Oxford Handbook of Bioethics, ed. Bonnie Steinbock (Oxford: Oxford University
Press, 2007), pp. 46–71, reprinted with revisions as “One Method to Rule Them All? Reflective
Equilibrium in Bioethics,” in Arras, Methods in Bioethics, ed. Childress and Adams, chap. 8; Daniels,
“Reflective Equilibrium” (2016 revision), section 4; Strong, “Theoretical and Practical Problems with
Wide Reflective Equilibrium in Bioethics”; Michael R. DePaul, Balance and Refinement: Beyond
Coherence Models of Moral Inquiry (London: Routledge, 1993); Kai Nielsen, “Relativism and Wide
Reflective Equilibrium,” Monist 76 (1993): 316–32; and David DeGrazia and Tom L. Beauchamp,
“Philosophical Methods,” in Methods of Bioethics, 2nd ed., ed. Sugarman and Sulmasy, pp. 37–53.
51. 51. For a work in biomedical ethics that makes a reasonable claim to be using the method of reflective
equilibrium throughout the book, see Allen Buchanan, Dan W. Brock, Norman Daniels, and Daniel
Wikler, From Chance to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2000).
52. 52. Revisions of our theory across the eight editions of this book have benefited along the way from the
criticisms and constructive suggestions of Ruth Faden, Oliver Rauprich, John Arras, Allen Buchanan,
Norman Daniels, Bernard Gert, Dan Clouser, Rebecca Kukla, Carson Strong, Albert Jonsen, Earl Winkler,
Frank Chessa, Robert Veatch, David DeGrazia, Ronald Lindsay, Avi Craimer, Henry Richardson, Marta
Dias Marcelos, Bettina Schöne-Seifert, and Michael Quante.
53. 53. See especially Rebecca Kukla, “Living with Pirates: Common Morality and Embodied Practice,”
Cambridge Quarterly of Healthcare Ethics 23 (2014): 75–85; and Oliver Rauprich, “Common Morality:
Comment on Beauchamp and Childress,” Theoretical Medicine and Bioethics 29 (2008): 43–71.
54. 54. We were criticized for an incautious formulation of this point by Jan Reinert Karlsen and Jan Helge
Solbakk, “A Waste of Time: The Problem of Common Morality in Principles of Biomedical Ethics,”
Journal of Medical Ethics 37 (2011): 588–91.
55. 55. Gert, Morality: Its Nature and Justification, pp. 114–15; and Gert, Culver, and Clouser, Bioethics: A
Systematic Approach, p. 104. See also the gloss in Gert, Culver, and Clouser, “Common Morality versus
Specified Principlism: Reply to Richardson,” pp. 310, 316.
56. 56. We are indebted in this formulation to Ronald A. Lindsay, “Slaves, Embryos, and Nonhuman Animals:
Moral Status and the Limitations of Common Morality Theory,” Kennedy Institute of Ethics Journal 15
(December 2005): 323–46.
57. 57. The ideas in this section draw on Beauchamp, Standing on Principles: Collected Essays, chapter 11.
58. 58. For sources that make such claims and the unlikely character of the claims, see Peter Herissone-Kelly,
“The Principlist Approach to Bioethics, and Its Stormy Journey Overseas,” in Scratching the Surface of
Bioethics, ed. Matti Häyry and Tuija Takala (Amsterdam: Rodopi, 2003), pp. 65–77, esp. 66; Herissone-
Kelly, “Determining the Common Morality’s Norms in the sixth edition of Principles of Biomedical
Ethics,” Journal of Medical Ethics 37 (2011): 584–87; Ronald A. Lindsay, “Bioethics Policies and the
Compass of Common Morality,” Theoretical Medicine and Bioethics 30 (2009): 31–43, first section;
Rebecca Kukla, “Living with Pirates”; and William T. Branch, “Is Rorty’s Neopragmatism the ‘Real’
Foundation of Medical Ethics: A Search for Foundational Principles,” Transactions of the American
Clinical and Climatological Association 117 (2006): 257–71. We profited from these criticisms and have
attempted to remove some of the unclarities in our previous editions.
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59. 59. See Leigh Turner, “Zones of Consensus and Zones of Conflict: Questioning the ‘Common Morality’
Presumption in Bioethics,” Kennedy Institute of Ethics Journal 13 (2003), 193–218; Donald C. Ainslie,
“Bioethics and the Problem of Pluralism,” Social Philosophy and Policy 19 (2002): 1–28; Carson Strong,
“Exploring Questions about Common Morality,” Theoretical Medicine and Bioethics 30 (2009): 1–9; and
DeGrazia, “Common Morality, Coherence, and the Principles of Biomedical Ethics.”
60. 60. “The moral point of view” is a designation that descends from a number of moral theories first
developed in the 1950s. The theory presents an ideal of moral judgment; the core of the idea is that the
moral point of view is the one that would be taken by impartial, dispassionate, and disinterested judges.
The most detailed work on the subject is Kurt Baier, The Moral Point of View (Ithaca, NY: Cornell
University Press, 1958). On the history, scope, and influence of the theory, see Kai Nielsen, “Moral Point
of View Theories,” Crítica: Revista Hispanoamericana de Filosofía 31 (1999): 105–16.
61. 61. In saying that some persons are not committed to morality, we do not mean that they are not dedicated
to a way of life that they consider a moral way of life or that anthropologists would say they are not
committed to morality. Extreme religious fanatics and political zealots have this self-conception even as
they act against or neglect the demands of the common morality.
62. 62. If the selected group shares the norms, this fact supports the idea of a common morality, but it is not
conclusive. For a conclusive confirmation one would need to investigate all persons committed to a moral
way of life, which is not feasible. Thus, there remains an issue of what constitutes sufficient evidence.
63. 63. Bernard Gert (and subsequently revised by Joshua Gert), “The Definition of Morality,” The Stanford
Encyclopedia of Philosophy (Fall 2017 Edition), ed. Edward N. Zalta, available at
https://plato.stanford.edu/archives/fall2017/entries/morality-definition/ (accessed April 20, 2018) (italics
added).
64. 64. Gert, Common Morality: Deciding What to Do, p. 84.
65. 65. Gert, Morality: Its Nature and Justification, pp. 29–33, 39–41, 181.
66. 66. For a pragmatic account with direct relevance to biomedical ethics and our claim about pragmatic
justification, see Henry S. Richardson, Articulating the Moral Community: Toward a Constructive Ethical
Pragmatism (New York: Oxford University Press, 2018).
67. 67. See further Tom L. Beauchamp, “A Defense of the Common Morality,” Kennedy Institute of Ethics
Journal 13 (2003): 259–74; Oliver Rauprich, “Common Morality: Comment on Beauchamp and
Childress,” pp. 43–71, at 68; Rauprich, “Specification and Other Methods for Determining Morally
Relevant Facts,” Journal of Medical Ethics 37 (2011): 592–96; and K. A. Wallace, “Common Morality
and Moral Reform,” Theoretical Medicine and Bioethics 30 (2009): 55–68.
68. 68. Revision of the account in this section has benefited from published criticisms by and private
conversations with Peter Herissone-Kelly, Bernard Gert, Oliver Rauprich, and Rebecca Kukla. Herissone-
Kelly appropriately, and constructively, criticized us in his original work on the subject, “The Principlist
Approach to Bioethics.”
69. 69. Foot, Moral Dilemmas (Oxford: Oxford University Press, 2002), pp. 6–7. Peter Herissone-Kelly
directed us to this passage; see his use of it in “Determining the Common Morality’s Norms in the Sixth
Edition of Principles of Biomedical Ethics,” Journal of Medical Ethics 37 (2011): 584–87, at 584.
70. 70. For a superb explication and defense of this distinction between the descriptive and the normative, see
Gert’s “The Definition of Morality.”
71. 71. See Chapter 1, pp. 3–4, on central virtues (“ten examples of moral character traits, or virtues”
recognized in the common morality).
72. 72. Philosophers who attempt to analyze the concept of morality exhaustively in terms of descriptive
conditions miss what is morally most important in the concept. These theories often describe morality as
composed of (1) norms that are regarded as supremely authoritative and of overriding social importance,
or (2) norms that are prescriptive in form (i.e., action-guiding imperatives that do not describe states of
affairs), or (3) norms that are universalizable, or (4) norms that harmonize pro and con interests, or (5)
norms that require other regarding conduct, or (6) a combination of some of these five. By design, these
accounts do not address whether there is a specific normative content that is privileged and constitutive of
morality. Proponents of this form of theory, which is often concerned to distinguish moral judgments and
norms from nonmoral ones, include John Hartland-Swann, An Analysis of Morals (London: George Allen
& Unwin, 1960); William K. Frankena, “What Is Morality?” in his Thinking about Morality (Ann Arbor:
University of Michigan Press, 1980), chap. 1; and Gerald Wallace and A. D. M. Walker, The Definition of
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Morality (London: Methuen, 1970). See also the discussion in James F. Childress, “The Identification of
Ethical Principles,” Journal of Religious Ethics 5, no. 1 (1977): 39–68; the original version of this essay
appears in the Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of
Research, by the National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, DHEW Publication No. (OS) 78-0013, 1977, Appendix, vol. I.
73. 73. Gert defends a somewhat similar view in “The Definition of Morality.”
74. 74. A relevant example of theory skepticism is Annette Baier, Postures of the Mind (Minneapolis:
University of Minnesota Press, 1985), pp. 139–41, 206–17, 223–26, 232–37.
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INDEX
Abandonment of patients, 107, 137, 187, 189, 310, 353, 411
Abortion, 65, 85–86, 103–4. See also Embryos; Fetuses; Moral status
conscientious refusals and, 45, 427
moral dilemmas of, 11
moral status and, 90
rule of double effect and the justification of, 167–71
Access
confidentiality of information to control, 344, 376n63
continued access to research subjects of investigational products, 227–28
disparities in, 283–84
expanded access to investigational products, 224–27
to health care, 281–84, 290–300
to health insurance, disparities in, 283–84, 290
to individual and group information. See Confidentiality
to organ and tissue donations, 230
privacy and, 338–39
Acquired immunodeficiency syndrome (AIDS), 53, 110–11, 225–26, 268, 294, 311, 366–67, 369. See also HIV
infection
Active euthanasia, 164. See also Euthanasia; Killing and letting die; Physician-assisted hastening of death
Act utilitarianism, 391–92. See also Utilitarian theory
Adkins v. Ropp, 160–61
Advance directives. See also Surrogate decision making
absence of, 174, 195–97
conscientious refusal and, 43–44
nonmaleficence and, 193–94
overriding of, 117, 141–42
professional–patient relationships and, 194
the pure autonomy standard and, 140–41
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respect for autonomy and, 193–94
specifications regarding, 14, 17, 20
types of, 194
Advocacy, 35, 40, 195, 221, 337, 456
Affiliation, in capability theories, 278
Age, rationing by, 305–6, 325n114. See also Elderly persons
Agency, 74–75, 86–87, 100. See also Autonomy; Moral agency
Aid-in-dying. See Physician-assisted hastening of death
AIDS. See Acquired immunodeficiency syndrome.
Albertsen, Andreas, 321n77
Albuterol, 127
Alcohol-related end-stage liver failure (ESLF), 295–97, 321n77, 322n81
Allen, Anita, 337–38, 374n44
Allocation. See also Access; Justice; Rationing
in communities, 277, 303, 326n123
complete-lives system of, 325n114
fair opportunity and, 294
of health care resources, 252, 254, 275, 300–12
justice in, 300–1, 325n114
moral dilemmas of, 303
Oregon’s Basic Health Services Act and, 302
in organ transplantation, 230, 286, 296–97
in a public health emergency, 313
rationing and, 304–13, 325n113, 325n114
Allowing to die, killing compared to, 155, 181–84, 433
ALS. See Amyotrophic lateral sclerosis
Altruism, 52, 56, 218–19. See also Beneficence; Organ and tissue donation
Alzheimer’s disease, 73, 79, 95n28, 142, 190–91, 232
American Cancer Society, 252
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American Medical Association (AMA), 8, 13, 34–35, 49, 128, 327, 350, 379n98
American Nurses’ Association, 355–56
American Pediatrics Society, 245
Amyotrophic lateral sclerosis (ALS), 192–93, 437
Analogy, 132, 231, 243, 432–39
Anencephalic individuals, 85
Anesthesia, 23, 108–9, 367–68, 390
AN&H. See Artificial nutrition and hydration
Animals. See also Cognitive capacity; Pain; Research; Suffering; Vulnerable individuals and groups
animal–human hybrids, 69–70
balancing moral norms in the care of, 23
brains and cognition of humans compared to other, 74
chimeric animals in research, 69–70
cognitive capacities of, 72–74, 86
human relationships with, 79–80
moral agency and, 75, 86–87
moral status of, 65–67, 69–80, 82, 86–88, 92
pain, distress, and suffering of, 23, 76–77
research involving, 69–70, 76–80, 82, 86–92
sentience in, 76–78, 86
transgenic, 69
Anscombe, Elizabeth, 58n5
Antipaternalism, 236–37, 241
Anti-retroviral therapies (ARTs), 110, 350
Aplastic anemia, 222–23
Appelbaum, Paul, 116
Applied ethics, 2, 26n3, 426, 445. See also Practical ethics
Aristotle, 39–40, 46, 49–52, 91, 268, 275, 277, 386, 409–11, 415–16, 423n62. See also Moral excellence;
Virtues
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Arras, John, 438
Artificial hearts, 239–40, 363
Artificial nutrition and hydration (AN&H), 162, 165–66, 205n29
ARTs. See Anti-retroviral therapies
Aspiration in ethics, moral excellence and, 51
Assisted suicide. See Physician-assisted hastening of death
Associational privacy, 338. See also Privacy
Authority
autonomy and, 103–4, 120–21
killing–letting die distinction and, 183–84, 433
for physician-assisted dying, 189
Autonomy. See also Capacities; Choice; Competence; Consent; Informed consent; Liberty; Paternalism
agency in acts of, 100
antipaternalism and, 236–37
authority and, 103–4, 120–21
beneficence and, 105–6, 261n40. See also Paternalism
best interests standard and, 141–42
choice in acts of, 35, 100–8, 112–18, 139, 188–89
competence and capacity for, 99, 114
complexities in respecting, 108–12
the concept of, 99–103, 119
confidentiality and, 347
criteria of, 114–15
dignity and, 397
diminished, 72–73, 99, 105
disclosure of information and, 123–25. See also Disclosure
in elderly persons, 106, 139
express consent as an act of, 108–9
family-centered models of, 106–8
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in formal analysis that balances benefits, costs, and risks, 243–44
and futile medical interventions, 173–74
historical understandings of, 99
implicit consent as a form of, 108
informed consent rules grounded in, 18, 108–12, 118–23
intention as a condition of, 102–3
Kantian theory of, 395–96
the limitation of, 104
nonautonomous patients, surrogate decision makers for, 139–42
noncontrol as a condition of, 102–3
paternalism in conflict with, 230–43, 261n40
physician-assisted hastening of death and, 188–89, 192
precedent, 140
presumed consent as a form of, 108, 111
priority of the principle denied, 99, 104–6, 143
privacy and, 340
pure autonomy standard and, 140–41
relational, 104, 106–8, 144nn9–10.
respect for, as principle protecting, 13, 17–20, 23–24, 40, 74, 99–112, 119, 192–94, 237, 328, 332–33
slavery and, 448–49
split-level theories of, 100–2
staged disclosure as consistent with, 111–12, 332
substituted judgment standard and, 139–40
theories of, 72–73, 99–103, 119
understanding as a condition of, 102–3, 130–36
veracity and respect for, 327–37
voluntariness (and noncontrol) as a condition of, 102–3, 105, 122–23, 136–39
Auto Workers v. Johnson Controls, Inc., 270
AZT. See Azidothymidine
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Azidothymidine (AZT), 226, 366–67, 369. See also Acquired immunodeficiency syndrome (AIDS); HIV
infection
Bad news, disclosure of, 106–7, 122–30, 329–36, 351–53. See also Disclosure; Informed consent
Baier, Annette, 40, 327
Balancing of moral norms. See also Paternalism; Prima facie obligations and rights
as affecting privacy rules and public health surveillance, 340–42
in animal care and use, 23
of benefits and harms in medicine, 22
compassion and detachment in, 21–22
constrained, 22–24, 238, 261n40, 342, 351–52, 443, 457
deliberation and judgment in, 20, 22
intuitive, 20
justification in, 20, 126
laws and, 23
moral status and, 82, 84–5
of prima facie principles and rights, 15–16, 22, 84, 337, 402–3
respect for autonomy involved in, 23–24
specification and, 10, 19–20, 22, 430–31, 456–57
in the Warnock Committee report, 82
Bang v. Miller Hospital, 131
Basic capabilities. See Capacities; Capability theories
Basic Health Services Act, of Oregon, 302
Basic Rights: Subsistence, Affluence, and U.S. Foreign Policy (Shue), 404
Behringer, William, 343
Belief, false, 134–35. See also Benevolent deception; Deception; Paternalism
Belmont Report, 434–35, 148n57, 461n26
Beneficence. See also Autonomy; Benevolence; Justice; Nonmaleficence; Paternalism; Utilitarian theories
autonomy and, 105–6, 261n40
best interests and, 141–42, 234
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children controlled for, 237
codes that include a principle of, 6–8, 34–35, 49, 299, 327
common morality as including, 218, 220
the concept of, 217–19, 244
continued access to pharmaceuticals and, 227–28
cost-effectiveness and cost-benefit analyses, 251–53, 255–56, 303
costs and risks balanced with, 174, 243–51
duty of rescue as an instance of, 221–24, 256
and expanded access to investigational products, 224–27
in the experimental breast cancer clinical trial, 226
futility and appeals to, 242–43
general and specific forms of, 219–21, 228–29
good Samaritan parable and, 218
ideals of, 218–19, 221, 230
in learning healthcare systems, 229–30
limits on the scope of obligatory, 221, 224
nonmaleficence compared to, 156–58, 219
obligations of, 48, 156–58, 217–30, 256, 257n9, 406, 429, 431–32
partiality permitted in acts and rules of, 219
paternalism grounded in, 230–43, 261n40, 263n64
physician-assisted hastening of death and, 188, 192
and policies to increase donor organs, 230
positive, 217, 219, 223
precautionary measures based on, 249–51
principle of utility and, 217–18
principles of, 13, 23–24, 156–57, 171, 217–18
QALY analysis and, 252–56, 305
reciprocity-based justifications of obligatory, 228–30
risk assessment and, 244–49
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Singer’s theory of, 220–21, 298–99
in suicide prevention, 239–42
supererogation and, 48
in the Tarasoff case, 223
therapeutic privilege and, 127, 149n65
utilitarian theories as relying on, 218, 255, 394
in valuing lives, 252–56
in valuing quality-adjusted life years (QALYs), 254–56, 305
veracity and, 328, 330–31
Benevolence, 52, 218, 253, 330–31. See also Beneficence; Moral excellence; Moral ideals; Virtues
Benevolent deception, 330–31
Bentham, Jeremy, 31–32, 77, 272, 388–89, 461n23
Berger, John, 52–53
Berlex Laboratories, 310–11
Best interests. See also Beneficence; Nonmaleficence; Surrogate decision making
beneficence and, 141–42, 234
Charlie Gard case involving, 180, 210n74
of children, 177–80, 220
the harm standard and, 178–79
laws and, 180
nonmaleficence and, 177–80
paternalism and, 234
patient’s values as defining, 101
quality-of-life judgments and, 177–80
as a surrogate decision-maker standard, 141–42
Betaseron, as distributed by lottery, 310–11
Bias. See also Conflict of Interest; Discrimination; Impartiality; Justice
casuistry and, 437–38. See also Casuistry
cognitive, 235
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conflicts of interest involving, 357
implicit and visceral racial, 285
judgments and, 440, 452
moral excellence and, 91–92
randomized trials as protecting against, 364, 368
Biological specimens (stored) and broad consent, 200–2. See also Broad, or blanket, consent
Biomedical ethics
codes of, 8, 48–49, 327
common morality as a foundation of, 5, 444–49
frameworks of principles in, 13, 25, 29n33, 99, 416, 440, 443–45, 455
Blame, 32, 34, 45, 75, 413
Blameworthiness, 34, 160, 257, 413
Blood transfusions, 103–4, 112, 135–36, 231, 239, 354, 432, 459n15
Blum, Lawrence, 63n61
Bone marrow donation, 55, 222–23
Borges, Jorge Luis, 267
Bosk, Charles L., 34
Bottom-up models of method and justification, 426, 432–39. See also Casuistry; Justification
Brains. See also Cognitive capacity
of animals compared to humans, 74
of brain-damaged individuals, 68, 73, 77, 177
brain death, 66, 85, 93n7
of chimeras, 69–70
progressive organic brain syndrome, 165–66
sentience and, 76–78
Brandeis, Louis, 339
Brandt, Richard, 417
Bratt, Robert, 345
Breast implants, silicone, 246–49, 263n64
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Broad, or blanket, consent, 200–2
Brock, Dan, 117–18
Buchanan, Allen, 117–18
Burdens. See also Harm
to families, 111, 187, 189
their role in balancing moral norms, 21
to surrogate decision makers, 196
of treatments, 164, 174
Bypass grafting, 254, 284
CABG. See Coronary artery bypass grafting
California Supreme Court, 10–11, 123
Callahan, Daniel, 277, 315n17
Camus, Albert, 46
Canadian Pediatrics Society, 245
Cancer
de minimis risk of, 245
diagnoses of, 332–33, 358
disclosure of bad news on, 329
false belief about, 134–35
guaiac tests for detection of, 252
palliative care for patients with, 184–85
principle of respect for autonomy and, 105
quality-of-life judgments and, 175
RCTs for, 382n125
screening for, disparities in, 284
staged disclosure of, 330–32
Capability theories of justice, 270–71, 277–79, 293
Capacities. See also Autonomy; Cognitive capacity
for autonomous choice, 112–18
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and balancing moral norms, 22
of brain-dead pregnant women, 66, 93n7
degrees of, 83
loss of, 78
for moral agency, 87
in moral status determinations, 68, 72–78, 86–87
for pain and suffering, sentience and, 76–77
personhood and, 70–72
self-governance, 100
for sentience, 77
for sympathy, 90–91
Capital punishment, 379n98
Cardiopulmonary bypass, 311
Cardiopulmonary resuscitation (CPR), 165, 174
Cardiovascular implantable electronic devices (CIEDs), 164
Care. See also Compassion; Health care; Nursing; Virtues.
compassionate use programs and, 225–27
due care obligations in roles of, 159–61, 353–55, 358, 362
ethics of, 35–37, 58n12
futile interventions and, 171–74, 179–80
learning system of, 229–30
obligations in, 49
palliative, 166, 172, 184–85, 186
preventive, 303
reciprocity and, 229
voice of, 36
Caring, virtues of and theory of, 35–37
Carrion, Daniel, 53
Case-based accounts of ethics. See Casuistry; Justification
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Casuistry, 6, 433–39, 460n21, 461n23, 461n29
Categorical imperatives, 395–97. See also Kant, Immanuel; Kantian theory
CBA. See Cost-benefit analysis
CDC. See Centers for Disease Control and Prevention
CEA. See Cost-effectiveness analysis
Centers for Disease Control and Prevention (CDC), 109–11, 198, 245
Certitude, moral, 434–35, 438–39. See also Considered moral judgments and moral theory
Chance, as a method of rationing health care, 310–11
Character. See also Moral excellence; Moral ideals; Virtues
Aristotelian ideals of, 50–52
compassion as a focal virtue in, 38–39
conscientiousness as a focal virtue in, 42–45
discernment as a focal virtue in, 39–40
integrity as a focal virtue in, 41–42
moral, 3–4, 31–57, 409–16
moral errors and, 34, 58n8
moral excellence and, 49–57, 63n67
moral ideals and, 45–49
obligations and, 50–51
trustworthiness as focal virtue for, 40
virtues and, 31–45, 412–13, 415. See also Virtues
Charity, 4, 6, 218–19, 274, 406. See also Beneficence; Gift-giving; Organ and tissue donation
Chemotherapy, 175, 329, 333
Chief Medical Officer’s Expert Group, 82
Childbearing. See Children; Pregnant women
Children. See also Families; Vulnerable individuals and groups
abuse of, 91
best interests of, 177–80, 220
control of, 103, 237
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harm standard and, 178–79
moral status of, 66, 73, 75, 80, 88
quality-of-life judgments about, 176–80
rationing and, 306
in research, 66, 88–89, 435
specific beneficence and, 220
Chimeras and their moral importance, 69–70
Choice, autonomous, 35, 100–8, 112–18, 139, 188–89. See also Autonomy
CIEDs. See Cardiovascular implantable electronic devices
Cigarette taxes, 235
Citizenship and health care rights, 270, 299, 308–9, 325n113. See also Justice
Clarity, in moral theories, 386
Clark, Barney, and heart experimentation, 239–40
Clinical depression and suicide, 239–42
Clinical equipoise, 364–66, 369, 382n123, 382n124
Clinical ethics, 360–70
Clinically nonbeneficial treatment, 242–43
Clinical trials. See also Research
clinical equipoise in, 364–66, 369, 382n123, 382n124
compassionate use programs and, 225–27
conflicts in, 363–68
continued access in, 227–28
disclosure in, 364
early termination of and withdrawal from, 368–69
expanded access to, 224–27
goals of, 225
for HIV/AIDS treatment, 268, 367
justifying conditions for, 369
placebo-controlled, 366–68, 383n131, 383n132
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problems of consent in, 364–65, 368
randomized, 125–26, 130, 363–70, 382n125
Clouser, Danner, 428–32, 457
Cocaine, 129–30
Codes of ethics. See also Percival; Professional–patient relationships
on assumption of risk by physicians, 6
in biomedical ethics, 8, 48–49, 327
on confidentiality breaches, 347–48
moral change in, 445–46
on obligatory beneficence, 229
and professional moralities, 6–8, 49, 327
and public health, 8
the virtues in, 34–35
Coercion, 102, 119, 136–38, 288. See also Autonomy; Constraining situations; Manipulation
Cognitive biases, 235. See also Bias; Understanding
Cognitive capacity. See also Brains; Moral status
autonomy and, 99
in moral status determinations, 68, 72–74, 86
of nonhuman animals, 73–74, 86
personhood and, 70–72
sentience and 77. See also Sentience
Coherence of moral beliefs, 13, 386, 439–44, 457
Coherentism in ethical theory, 440, 443
Comatose patients, 39, 162, 166, 192, 196. See also Persistent vegetative state
Committee of Inquiry into Human Fertilisation and Embryology (Warnock Committee), 82
Common morality
beneficence in, 218, 220
conceptual justifications of, 454–56
and considered moral judgments, 445–46
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criteria and major features of, 445
customary moralities not included in, 445, 458
empirical justifications in studying, 5, 449–52
harm prevention and, 453
human rights and, 4
hypotheses about, 5
methods of examining, 4–5, 444–57
moral change in, 445–49
moral ideals and, 4
moral status and, 92
nature of, 3–5
nonnormative and normative ethics and, 1–2, 4–5, 454–56
normative theoretical justification of, 452–54
particular moralities contrasted to, 5–7
pluralism in, 4–6, 445, 456
pragmatic justification of, 453–54
problems for theories of, 456–57
research on, 450–52
rules of, 14, 444–45, 447–48, 455
slavery as inconsistent with, 447–49, 455
specification and judgment in, 456–57
supererogation and, 46
theories of, 3–5, 26n5, 26n7, 452–54, 457, 458
types of justification of, 444–57
as universal morality, 3–5, 428, 446, 450–51, 456
virtues in, 3–4, 26n6
Common Morality: Deciding What to Do (Gert), 453
Communitarian theories of justice, 270–71, 275–77, 297
Communities. See also Public health
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allocations in, 277, 303, 326n123
autonomy of, 103–4
and common morality, 4, 49
crises in, 224, 312
moral, 68, 79, 96n35, 143, 447
Compassion, 31, 37–39. See also Care; Moral ideals; Sympathy; Virtues
AIDS treatment with AZT and, 367
balancing of detachment and, 21–22, 39
empathy compared to, 38, 59n25
ethics of care and, 37
as a focal virtue, 38–39
futile medical interventions and, 174
impartiality potentially conflicting with, 39
for patients needing unapproved drugs, 45
sympathy and, 38
Compassionate use programs, 225–27. See also Expanded access to experimental therapies
Competence. See also Autonomy; Incompetence; Informed consent; Moral status; Surrogate decision making
autonomy, decisional capacity, and, 112–18, 147n42
concept of, 113–15
criteria and standards of, 113, 115–18
gatekeeping function of judgments of, 112–13
informed consent and, 122
and judgments of general incompetence, 114
quality-of-life judgments and, 175
sliding-scale strategy for determining, 116–18
standards of, 115–18
as temporary and varying, 113–15
Compliance, 136–37, 288, 349
Comprehension studies, 132–33
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Comprehensiveness as a criterion of moral theories, 386–87
Compromise, 15, 42, 133–34, 139, 237, 293, 355, 392, 410
Conceptual normative justification, 454–56. See also Justification
Confidential information, disclosure of, 15–16, 223
Confidentiality. See also Autonomy; Disclosure; Privacy
and access to individual and group information, 342–44, 376n63
autonomy and, 347
codes of ethics on breaches of, 347–48
consequence-based arguments for, 346–47
and disclosure of genetic information to third parties, 351–53, 378n88
evolving practices and standards of, 344
HIV infection notification and, 349–51
justification of infringements of, 347–53
justification of obligations of, 345–47
Kantian theory and, 395–96
lax standards of, 344–45
limits to, 345, 353
of medical records, 342–44, 376n63
moral dilemmas and, 10–11, 346
nature of medical, 344–45
notification requirements and, 349–51
paternalistic breaches of, 347
practices of criticized as a ceremonial fiction, 343
prima facie obligations and, 15–16, 328, 351–52
of prisoners, 345
privacy and, 337, 342–43, 347
in professional–patient relationships, 342–53, 376n63
in research ethics, 200, 345
rights to, 11, 342–43, 401
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and risks of harm, 346, 348
the Tarasoff case of overriding, 10–11, 223, 346, 377n70
traditional rules of, 343–44
violations and infringements of, 342–43, 346–48
Conflict of interest, 353–54, 356–60, 369, 374n39, 380n103. See also Self-interest
Congestive heart failure, 165
Conrad, Joseph, 52
Conscience, 17, 42–43, 194, 242
Conscientiousness, 34, 42–45, 228, 239, 313, 398, 427
Conscientious objections and refusals in health care, 43–45, 401, 427
Consensus, 111, 164, 172, 248, 277, 290, 435, 445
Consent. See also Informed consent
autonomous, 18, 108–12, 118–23
broad, or blanket, 200–2
in clinical trials, problems with, 364
express or explicit, 108–11
general and specific, 108–9, 201
implicit or implied, 108–10
informed. See Informed consent
paternalism justified by, 237
physician-assisted hastening of death and, 189
presumed, 108, 111
privacy and, 109
in professional–patient relationships, 108–9
rights to, 107–11, 119–20, 152n96
tacit, 108, 111
Consequence-based arguments regarding confidentiality, 346–47
Consequentialism, 388. See also Utilitarian theories
Considered moral judgments and moral theory, 13, 426, 439–46, 448, 450, 452
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Consistency of maxims, 396
Constituency factors, in screening, 308–9
Constrained balancing, 22–24, 238, 261n40, 342–43, 351–52, 457
Constraining situations, 288. See also Coercion; Voluntariness
Continued access to experimental therapies, 227–28
Contraception, 338
Contracts. See also Roles, responsibilities, and practices
disclosure in, 345
fidelity and, 354–55
informed consent and, 120
obligations based on, 399
relationships created by, 220, 222, 328
Controlling influences, 100–4, 136–39. See also Autonomy; Coercion; Informed consent; Manipulation;
Voluntariness
Convergence of ethical theories on principles, 416–17
Coronary artery bypass grafting (CABG), 254, 284
Correlativity of rights and obligations, 405–8, 414, 422n51. See also Rights
Cost-benefit analysis (CBA), 251–53, 257, 265n83
Cost-effectiveness analysis (CEA), 251–53, 255–56, 303. See also Allocation; Cost-benefit analysis; Oregon
plan; Utilitarian theories
Costs, benefits, and risks balanced, 243–52
Cost-utility analysis (CUA), 303
Council on Ethical and Judicial Affairs, AMA, 350
Counseling, directive and genetic, 351–52
CPR. See Cardiopulmonary resuscitation
Craniotomy, 168–69, 171
CUA. See Cost-utility analysis
Culpability, 162, 189, 222
Cultural and customary moralities, 32, 445, 450
Cultures of trust, 40
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Culver, Charles, 428–32
Customs, 8, 49, 124, 455. See also Common morality; Pluralism
Daniels, Norman, 275, 305–6
Data and safety monitoring board (DSMB), 367–69
Decent minimum of health care, 292–94. See also Allocation; Justice; Right to health care
Deception. See also Disclosure; Informed consent; Paternalism; Veracity
to avoid communicating bad news, 330–33
benevolent, 127, 330–31
and informed consent, 119, 127, 329
justification of, 130, 328
paternalistic acts of, 231, 432
and placebos, 127–28
promises and, 396
of research subjects, 129–30, 138, 435
rule utilitarianism and, 391–92
of third-party payers for health insurance, 18–19, 336–37, 358
veracity and, 328–31, 410
Decision aids for informed consent, 134
Decisional authority, 14. See also Informed Consent
Decisional privacy, 338. See also Privacy
Declaration of Geneva of World Medical Association, 327, 362
Deductivism, 426–32. See also Top-down theories
DeGrazia, David, 442
Degrees of moral status, 78, 81–85, 87, 92. See also Moral status
Deliberation, 20, 22, 125, 172–73, 178, 180, 224, 233, 285, 349, 439. See also Informed consent; Institutional
review board; Justification
Dementia, 74, 75, 114, 116, 134, 166, 177, 240
De minimis risk, 245. See also Risk
Deontological theory, 394–95. See also Kantian theory
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Department of Health and Human Services, 307
Department of Health and Mental Hygiene, New York City, 341
Depression, clinical, 232–33, 240–41, 248
Descriptive ethics, 2, 436, 454–56, 464n70
Detachment. See also Bias; Conflict of interest; Impartiality
balancing of compassion and, 21–22
and partiality and impartiality, 36
DFE. See Discounted future earnings
Diabetes, 111–12, 200–2, 341–42
Diagnoses. See also Disclosure
of cancer and terminal illness, 106–7, 232, 329–33
conflicts of interest and errors in, 358, 374n39
disclosure of, 106–7, 128, 331–32
honesty and truthfulness in, 332, 336
moral, 438
the patient’s right to receive, 328
prenatal, 179
quality-of-life judgments and, 155, 175–80
Dialysis, 111–12, 163, 174, 305. See also Kidneys
Dickert, Neal, 118
Dignity
autonomy and, 109, 397
death with, 185, 189
Kantian account of, 75, 397
quality-of-life judgments and, 176
as a rights-bearer, 409
vagueness of the term, 67, 176
Dilemmas, moral, 10–12, 223–24, 232, 303, 355, 412–13
Disability
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brain damage and, 187
children with a, 176, 187
discrimination based on, 186, 303, 437, 448
fair opportunity for those with, 193, 282, 292–93
intellectual, 176–77
quality-of-life judgments about, 175–80, 254–56
reduction of, 251, 275, 278
Disagreement, moral, 24–25, 356
Discernment (virtue of), 39–40, 51, 411, 438
Disclosure. See also Confidentiality; Informed consent; Privacy; Veracity
of bad news, 106–7, 122–30, 329–36, 351–53
benevolent deception and, 330–31
in clinical trials, 364
of confidential information, 10–11, 15–16, 223, 346
in continued access programs, 228
and deception of third–party payers, 18–19, 336–37
familial protective approaches to, 330, 333
of genetic information to third parties, 351–53, 378n88
historical shifts in policies of, 329–30
of HIV infection to third parties, 349–51
informed consent and, 111, 118, 123–30, 332
of medical errors, 34, 334–36, 358, 373n30, 373n31
paternalism in. See Paternalism
about use of placebos, 127–29, 364
professional practice standard of, 124
reasonable person standard of, 124–25
in research on human subjects, 123
staged forms of, 330–32
subjective standard of, 125, 148n62
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therapeutic privilege exception to, 126–27, 149n65
withholding information and, 129–30
Discounted future earnings (DFE), 253
Discrimination, 7, 235, 281–90, 303, 306, 425–26, 440, 447. See also Bias; Conflict of interest
Disparities in health care, 280, 283–85. See also Access; Allocation; Justice; Impartiality
Distributive justice. See Justice
Diversity, moral, 24–25. See also Ethnicity; Pluralism
Divided loyalties and fidelity, 353–54
DNR. See Do not resuscitate (DNR) orders
Donagan, Alan, 393, 398
Donation. See Charity; Organ and tissue donation
Do not resuscitate (DNR) orders, 162, 165
Double effect, rule of (RDE), 167–71
Down syndrome, 181
DPA. See Durable power of attorney
DSMB. See Data and safety monitoring board
Dual roles in research of clinician and researcher, 362–63. See also Conflict of interest
Due care, 159–61, 354–55
Durable power of attorney (DPA), 194, 196
Duties. See Obligations; Supererogation; Virtues
Dworkin, Gerald, 100, 237
Dworkin, Ronald, 142, 294, 402, 407–8
Ebola, 49
ECMO. See Extracorporeal membrane oxygenation
Economically disadvantaged persons. See Vulnerable individuals and groups
Ectopic pregnancy, 168
Egalitarian theories of justice, 255, 272, 274–75, 279, 281, 291–94, 310. See also Equality rights; Justice
Elderly persons. See also Disability; Families; Vulnerable individuals and groups
autonomy in, 106, 139
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neglect of, 91
pacemakers in, 164
quality-of-life judgments about, 255
rationing involving, 305–6
with a severe disability, 73, 88
stereotyping of, 306
withholding and withdrawing life-sustaining procedures from, 162–65, 173
Embryos. See also Fetuses; Moral status
animal-human hybrids and, 69–70
moral status of, 24, 65–71, 79, 82–86, 89–90, 92, 427–28
sentience and, 77, 85–86
Emotions
in Aristotle’s theory, 410
as a basis of moral status, 71, 76
ethics of care and, 37
influence by others on, 137–38
in Kantian theory, 399
in Nussbaum’s capability theory, 278
in professional–patient relationships, 31
sentience and, 76
as valuable in assessing moral worth, 399, 445
Empathy, 36, 38, 59n25. See also Sympathy
Empirical studies and justification, 5, 449–52
End-stage liver failure (ESLF), 295–97, 321n77, 322n81
End-stage renal disease (ESRD), 163, 285
Entitlements. See Rights and rights theory
Epidemics (Hippocrates), 230
Epilepsy, 114
Equality rights, 268–69, 274, 292–94. See also Egalitarian theories; Justice
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Equipoise, clinical, 364–66, 369, 382n123, 382n124. See also Research
Equitable access, 290
Equity-weighted CEAs, 256
Errors. See Medical errors
ESLF. See End-stage liver failure
ESRD. See End-stage renal disease
Ethics. See also Common morality; Moral theories; Morality; Professional ethics
applied and practical, 2, 26n3, 426, 445
of care, 35–37, 58n12
character-based, 31. See also Character; Virtues
criteria for assessing moral theories of, 386–88
justification in. See Justification
Kantian theories of, 394–400
the nature of theories of 385
nonnormative and descriptive, 1–2, 454–56
normative, 1–2, 26n4, 387
rights-based theories of, 400–409. See also Rights and rights theory
types of moral theories, 385–88, 394, 400, 409
utilitarian theories of, 388–94. See also Utilitarian theories; Justice
virtue theories of, 31, 35, 58n12, 409–10, 413. See also Virtue
Ethnicity, 106–7, 280, 283–86, 447–48
Euthanasia, 164, 170, 175–76. See also Killing–letting die distinction; Physician-assisted hastening of death
Excellence. See Moral excellence
Expanded access to experimental therapies, 224–27
Experiments. See also Expanded access; Research
on animals, 69–70, 76–77, 79, 82, 86–87, 89–90
continued access to experimental therapies, 227–28
expanded access to experimental therapies, 224–27
Nazi 118
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self-experimentation, 48
Tuskegee syphilis, 138, 435
Explanatory power, in moral theories, 387
Exploitation of subjects in research, 139, 286–90, 381n119. See also Children; Disability; Elderly persons;
Vulnerable individuals and groups
Express (or explicit) consent, 108–11
Extensive sympathy, 91–92. See also Empathy; Sympathy
Extracorporeal membrane oxygenation (ECMO), 311
Extraordinary treatment, 162, 204n16
Faden, Ruth, 279–80, 300
Fair-innings arguments about rationing, 306
Fairness, 267–68, 274
Fair opportunity (the rule of), 275, 281–86, 294–95
Fair transaction model of informed consent, 121
False belief, 134–35, 284, 332
Families. See also Children; Disclosure; Elderly persons
burdens to, 111, 176, 187–88, 189
conflicts of interest in, 193–97
disagreements within, 24
disclosure of genetic information to, 351–53, 378n88
futile interventions, decisions in, 179–80
harm standards and, 126, 178–79
quality-of-life judgments made by, 176–80
and privacy problems, 338, 351–53
refusal of treatment by, 178–79
surrogate decision makers in, 111, 139–42, 172–74, 195–97, 276, 330
withholding and withdrawing life-sustaining procedures and, 155, 161–66, 171–74, 183–84
FDA. See Food and Drug Administration
Feeding tubes, in nursing homes, 206n31. See also Artificial nutrition and hydration
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Feinberg, Joel, 48, 340
Feminist thought, 36, 58n12, 104, 144nn9–10, 433
Fetuses. See also Embryos
of brain-dead women, 66, 93n7
death of, justification for, 168–71
and maternal–fetal relations, 79
moral status of, 66, 68–71, 77, 79, 82–86, 89–90
quality-of-life judgments about, 176–80
in research, 89–90
rule of double effect (RDE) and, 167–71
sentience of, 77, 85–86
Fidelity. See also Confidentiality; Privacy
conflict of interest and, 353–54, 356–60, 374n39, 380n103
contracts and, 354–55
divided loyalties and conflicts of, 353–54
fiduciary duty and relationships, 11, 201, 346, 353, 364
honesty and, 358
and interests of institutions, 354–55
military physicians and, 355
nursing and conflicts of, 35, 355–56
prison physicians and, 355
in professional–patient relationships, 353–60
promises and, 353
self-referral as threatening to, 357
third-party interests and, 354–55
Food and Drug Administration (FDA), 225–26, 245–49, 263n64
Foot, Philippa, 454–55
Forensic evaluations and informed consent, 18–19, 29n34
Forfeiting health care rights, 294–97
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Forgive and Remember: Managing Medical Failure (Bosk), 34
Forssman, Werner, 53
Foundationalism in ethical theory, 443
Frameworks of moral principles, 13, 25, 29n33, 99, 416, 440, 443, 455, 458
Framing effects, human understanding and, 133–34
Frankena, William, 156–57
Fraud, 51, 136, 201
Friendship, 37, 50, 217, 222, 340, 357, 399, 412, 415
Frontiers of Justice (Nussbaum), 96n43, 278–79, 303
Futility (medical), 171–74, 179–80, 242–43
Ganciclovir case, 226–27
Gard, Charlie (case of), 180
Gender, 36, 270, 283–84, 425–26
General beneficence, 219–21, 228–29. See also Beneficence
Generalizable knowledge, 361–63
Generosity, 6, 35, 45, 91, 217, 219, 414
Genetic counseling, 351–52
Genetic information, disclosure to third parties of, 351–53, 378n88
Gert, Bernard, 26n5, 203n5, 257n1, 428–32, 446, 453–55, 457, 458n3
Gewirth, Alan, 407
Gift-giving. See also Charity; Organ and tissue donation
conflicts of interest in, 358–59
harm from, 220–21
motivation for, 32–33
supererogation and, 46
Gilligan, Carol, 36
Goldman, Alvin, on intention, 169
Good Samaritan parable, 218
Goods and services, positive rights to, 298, 404
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Grady, Christine, 133
Gratitude, 3, 229, 278, 410–11, 417
Griffin, James, 407
Griswold v. Connecticut, 338
Group harm, in research, 200–2. See also Vulnerable individuals and groups
Guaiac tests, 252
Guilt, 43, 46, 54, 196, 391
Hadorn, David, 256
HALYs. See Health-adjusted life-years
Handicapped persons. See Disability
Happiness, 389
Hard paternalism, 233–36, 238–39. See also Paternalism
Harm. See also Nonmaleficence; Pain; Risk; Suffering
balancing benefits of treatment with, 22, 82
beneficence and, 156–57, 220
the concept, definition, and types of, 158–59, 269
common morality’s goal of preventing, 453
due care and, 159–61, 354–55
from gift-giving, 220–21
to groups, in research, 200–2
Hippocratic tradition and oath regarding, 1, 155, 229–30, 327, 343
to incompetent patients, 193–97
justification of, 158
the killing–letting die distinction and, 155, 181–84
loss of confidentiality and risk of, 348
medical errors that cause, 58n8, 334–36, 358, 373n31, 374n39
minimization of, 429, 431
negligence resulting in, 159–61
nonmaleficence and, 155–59, 178–79
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obligations not to, 156, 248–49
Opioid use disorder (OUD) and, 247–48
from overprotection, 198–99
paternalism and, 230–33, 238–39, 242–43
from placebo-controlled trials, 366–67
the precautionary principle and, 249–51
preventable, 220, 224, 248–49, 334
prima facie obligations and, 15
public perceptions of, 249
rule of double effect and, 167–71
refusal of treatment causing, 178–79
in research, 80, 199–202
slippery-slope arguments and, 185–88
standard of, in quality-of-life judgments, 178–79
from underprotection of subjects in research, 199
wronging and harming compared, 158
Havasupai Indians and harms in research, 200–2, 403
Hazards and hazardous conditions. See Harms; Risks
Healing the Wounds (Hilfiker), 64n69
Health-adjusted life-years (HALYs), 254
Health care. See also Care; Justice
access to, 290, 292
allocation of resources in, 252, 254, 275, 300–1, 304
decent minimum of, 292–94, 298
for disabled persons, needs for, 292
disparities in, 283–86
egalitarian theories of distributive justice of, 255, 272, 274–75, 279, 281, 291–94
forfeiting rights to, 294–97
government-funded, arguments supporting, 290–92
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inequalities in the distribution of, 300
libertarian theories of, 290–91, 293
Oregon’s Basic Health Services Act and, 302
rationing and, 304–13
rights to, 267, 272–73, 275, 280–82, 290–300, 401
setting priorities in, 301–4
two-tiered system of, 293
Health insurance
access to, 224–28, 283–84, 290, 292
and deception of third-party payers, 18–19, 336–37, 358
disparities in access to, 283–84
fair opportunity and, 294–95
libertarian theories of, 290–91
privatized, 274, 293
risk in, 294–95
Health maintenance organizations (HMOs), 358
Hearts, artificial, 239–40, 363
Heart transplantation, rationing and, 306–8
Hedonistic utilitarian theories, 389
Hegel, Georg Wilhelm Friedrich, 275
Heroes. See also Moral excellence; Saints
criteria of, 53–54
examples of, 53–54
extensive sympathy in, 91–92
in living organ donation cases, 55–57
as moral excellence models, 52–55
moral ideals of, 6, 52–53
saints and, combined in individuals, 63n67
saints compared to, 52, 54
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self-sacrifice of, 47–48
supererogatory action in, 46–47
Heroin, 248
Heteronomy, 396
Hilfiker, David, 54, 64n69
Hippocrates, 34, 230
Hippocratic tradition and oath, 1, 34–35, 155, 229–30, 327, 343
History of health care ethics, 1, 8, 25n1, 27n14, 29n25, 230. See also Hippocratic tradition and oath; Percival
HIV infection. See Human immunodeficiency virus infection
HLA. See human lymphocyte antigen matching
HLHS. See Hypoplastic left heart syndrome
HMOs. See Health maintenance organizations
Honesty, 327, 332, 358. See also Truthfulness; Veracity
Hooker, Worthington, 391–92
Horng, Sam, 133
Human Fertilisation and Embryology Act of 1990 (UK), 82
Human immunodeficiency virus (HIV) infection, 109–11, 225–26, 248, 268, 341–43, 349–51. See also Acquired
immunodeficiency syndrome.
Human lymphocyte antigen (HLA) matching, 285–86
Human rights, 4, 16, 202, 268–69, 272, 407–9, 420n36. See also Rights
Hume, David, 38, 90–91, 218, 229, 275, 298, 409, 411, 416, 423n62. See also Virtues
Hursthouse, Rosalind, 413
Hutcheson, Francis, 218
Hybrids, animal-human, 69–70
Hydration, artificial, 162, 165–66, 205n29
Hypoplastic left heart syndrome, 179
ICUs. See Intensive care units
Ideals. See Moral ideals
Illicit drug use, 129–30
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Immoral preferences and actions and utilitarian theories, 393
Impartiality, 36–37, 39, 89–92, 195. See also Detachment
Incompetence. See also Advance directives; Autonomy; Competence; Disability; Informed consent; Moral
status; Surrogate decision making
criteria of and testing for, 112–13, 116
gatekeeping function in declarations of, 112–15
harm prevention and, 193–97
law on, 114–15, 126, 197
in moral status assessment, 66, 84
quality-of-life judgments and, 155, 171, 174–77
rights of, 403–4
sliding-scale strategy for determining, 116–18
standards of, 115–16
surrogate decision making for, 14, 66, 139–42, 176
temporary and over time, 113–14
therapeutic privilege and, 127, 149n65
Inducement, undue, 287–88
Inductivism, 432–39. See also Bottom-up models of method and justification
Inequalities, 274–75, 278, 280, 283, 299–300
Infant mortality, 177
Influences that control persons, 100–4, 136–39
Informational privacy, 338
Information processing, problems of, 133–34
Informed consent. See also Autonomy; Consent; Deception; Disclosure; Law; Veracity; Voluntariness
as autonomous authorization, 120–21
autonomy as the basis of requirements of, 108–11, 118–23
civil litigation over and liability, 123
competence and, 122. See also Competence
definition and concept of, 119–23
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disclosure and, 111, 118, 123–30, 332
the elements of, 122–23
fair transaction model of, 121
forensic evaluations and, 18–19, 29n34
framing effects and, 133–34
the functions of, 118–19, 147n48
informed refusals and, 111–12, 122
institutional rules of, 118, 120–21
interpreted as mutual decision making, 119–20
justification of, 118–19
laws on, 110–11, 118–21, 123, 126
nonacceptance and false belief impacting, 134–35
piggy-back studies and, 129
placebos and, 127–29, 364
professional practice standard of, 124
in randomized clinical trials, 125–26, 130, 364–65
reasonable person standard of, 124
rights of, 107–11, 119, 152n96
shared decision making compared to, 119–20, 148n52
specification and, 18
staged disclosure and consent, 330–32
the subjective standard of, 125
surrogate decision makers and, 66, 111, 195–97
therapeutic privilege exception to, 126–27, 149n65
therapeutic prescription of placebos and, 127–29, 364
two meanings and senses of, 120–21
understanding in patients and subjects and, 130–36
virtue theory and, 416
voluntariness and, 136–39
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waivers of, 126, 135–36, 152n96
withholding information and, 129–30
Injury. See Harm; Risks
Injustice, 280, 284, 289, 290, 316n28. See also Justice
Institutional review boards (IRBs), 199, 243, 363, 369
Institutions. See also Informed consent; Institutional review boards; Public policies
conflict of interest rules in, 359
correctional, 345, 355, 379n98
culture of trust in, 40
informed consent rules in, 118, 120–21
IRBs (institutional review boards) in, 199, 243, 363, 369
paternalism in the policies of, 233–35
refusal of treatment in, 44–45
role obligations and the rules of, 33
surrogate decision makers in, 111, 195–97
Integrity as a moral virtue, 32, 35, 41–42, 118, 278, 337, 401, 410–11. See also Virtues
Intensive Care Units (ICUs), 39, 198, 311, 356
Intentional nondisclosure, 125–30, 238
Intentions and the concept of intention, 33, 102–3, 167–71, 184, 231–32. See also Motives; Rule of double effect
Intrinsic goods, 276, 389
Investigational (experimental) products
continued access to, 227–28
expanded access to, 224–27
withdrawing from, 228
IRBs. See Institutional review boards
Islamic beliefs, 6
Israel, reciprocity-based organ donation system in, 230
Jaworska, Agnieszka, 101
Jehovah’s Witnesses, beliefs of, 103–4, 112, 135–36, 239, 354, 459n15
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Joint account model, for genetic information, 352
Jonsen, Albert, 434–39, 461n29
Justice. See also Access; Allocation; Bias; Rationing; Rights
in acquisition, 273–74
in allocation of goods and services, 300–1, 304, 325n114
arguments from, in support of rights to health care, 290–92
capability theories of, 270–71, 277–79, 293
communitarian theories of, 270–71, 275–77, 297
concepts of, 267–68
discrimination and, 270, 281–90, 303–6. See also Bias
distributive, 267–68, 271–72, 274, 289, 297–98
economically disadvantaged populations and, 286–90
egalitarian theories of, 255, 270–72, 274–75, 279, 281, 291–94, 310
fair opportunity and, 275, 281–86, 294–95
and the forfeiture of a right to health care, 294–97
the formal principle of, 268–69
fundamental needs and, 269
global health policies and theories of, 279, 280, 290, 292, 297–300
and the goal of a decent minimum of health care, 292–94, 298
injustices and their elimination, 284, 289, 290, 316n28
libertarian theories of, 270–71, 273–74, 290–91, 293
lotteries and, 267, 282–83, 310–11
material principles of, 269–71
morally relevant properties and distributive justice, 269
for noncitizens in national policies of healthcare, 270
and the Oregon plan of setting priorities, 302
in organ transplantation, 55–56, 295–97, 321n77, 322n81
pluralistic conceptions of, 271, 276
political liberalism and, 276
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priority of basic principles and, 99, 126, 143, 156–57
quality-adjusted life years (QALYs) and, 255–56, 305
rationing and, 304–13, 325n113, 325n114
rights to health and health care based on, 273, 290–300
scarcity of resources and tragic choices, 268
the scope of distributive, 268
setting priorities in health policies and, 301–4
Singer’s global theory of, 220–21, 298–99
specification of principles of, 267
statist contrasted to global theories of, 297–300
sufficiency of government support of, 291
in taxation, 297–98
theories of, 270–81, 313
in transfers of goods, 273–74
undue inducement in research and, 287–88
undue profit in research and, 287, 289–90
utilitarian theories of, 270–73, 220–21, 297, 388–94
vulnerable groups and, 89–92, 198, 286–90, 319n55
well-being theories of, 270–71, 279–80
Justification
of antipaternalism, 236–37, 241
balancing moral norms to achieve, 20–24, 82, 126
bottom-up models and casuistry on, 426, 432–39, 461n23
in common morality accounts, 425, 428–32, 439, 443–58
of compassionate use programs, 226
the concept of, 425–26, 454–56
and confidentiality problems, 345–53
conscience as a source of, 42
of controlling influences, 138
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criteria of coherence for achieving, 439–44, 457
empirical, 5, 449–52
Gert’s theory of, 428–32, 453, 455, 457, 458n2
of hard paternalism, 238–39
of harm, 158
the infinite-regress problem of, 428
of informed consent requirements, 118–19
and killing–letting die arguments, 155, 182–84
in law, 185–88, 425, 442
normative theoretical, 452–54
of paternalism, 236–39, 242. See also Paternalism
of physician-assisted hastening of death, 184–93, 213n92, 442
pragmatic, 433, 453–54
and problems of moral change, 445–49
in randomized clinical trials (RCTs), 125–26, 130, 364–70
Rawls’s theory of, 425, 440, 462nn43–44
reciprocity-based accounts of, 228–30
reflective equilibrium as a model of, 439–44, 452
of the right to privacy, 339–40
of risks, 159–60, 202
specification and. See Specification
of staged disclosure, 330–32
of surveillance, 341
three models of method and, 425
top-down models of, 426–32, 458n3
of uses of embryos in research, 427–28
for withholding and withdrawing life-sustaining procedures, 161–66, 171–74
Kamm, Frances M., 419n20
Kant, Immanuel, 75, 395. See also Kantian theories
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Kantian theories, 12, 105
of autonomy, 396–99. See also Autonomy
the categorical imperative in, 396–97
categorical rules in, 395–97
confidentiality and, 395
a constructive evaluation of, 400
contemporary Kantian theories, 397–99
critical evaluations of, 399
on emotion, 399
of heteronomy, 396–97
moral agency and moral status in, 75
moral law in, 399
on moral status, 73, 75
of moral worth, 395, 399
as nonconsequentialist, 394–95, 398, 400, 419n20
obligations in, 395–97, 399
problems of conflicting obligations in, 399
problems of moral narrowness in, 399
prohibition of lying in, 395
reason as central to, 397–98
of virtues, 399
Katz, Jay, 8–9
Keneally, Thomas, 412–13
Kessler, David, 246–47
Kevorkian, Jack, 190–91
Kidneys. See also Organ and tissue donation; Organ transplantation
dialysis of, 111–12, 163, 174, 285, 301, 305
donor gifts of, 55–57, 64n73, 309, 389–91
transplantation of, racial disparities in, 285–86
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transplantation of, risk and truthfulness in, 389–91, 395, 400–1, 409–10
Killing and letting die
conceptual questions about the distinction between, 181–82
forgoing life-sustaining treatment and, 183–84
intentionally arranged deaths and, 184–85
and judgments of rightness and wrongness, 182–83, 185
and the Oregon Death with Dignity Act, 185
as two different ways of causing death, 185–86
Kindness, 35, 37, 46–47
Kleinman, Arthur, 54–55
Kolff, Willem, 239–40
Korsgaard, Christine, 73, 398
Law. See also Public policies
balancing moral norms in, 23
best interests in, 180
citizenship requirements in, 270
common morality and, 9
confidentiality and, 10–11
courts as final decision makers, 197
disclosure requirements in, 123
equality rights and, 269
about incompetence, 114, 115
on informed consent, 110–11, 118–21, 123
justification in, 185–88, 425, 442
Kantian theory’s emphasis on moral, 395–97, 399
negligence and the due care standard in, 159–61
paradigm cases and, 435–36
on physician-assisted hastening of death, 185–88, 212n87, 442
precautionary principle and, 187, 249–51
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privacy and, 338
therapeutic privilege in, 126–27, 149n65
Learning healthcare systems, 229–30
Lesch-Nyhan disease, 177
Lethal drugs, 186, 188, 192, 379n98
Leukemia, 175, 191–92, 333
Levodopa, 367
Libertarian paternalism, 234–35
Libertarian theories of justice, 270–71, 273–74, 290–91, 293
Liberty. See Autonomy; Justice; Rights
Life, value of, 252–56
Life-sustaining procedures, withholding and withdrawing of, 155, 161–66, 171–74, 183–84, 192, 228, 242–43,
433, 437–38
Limited sympathy and extensive sympathy, 90–92
Living organ and tissue donation, 55–57, 64n73, 389–91, 395
Living wills, 194
Locke, John, 273–74
Lotteries, 6, 15, 267, 282–83, 310–11
“The Lottery in Babylon” (Borges), 267
Lou Gehrig’s disease (ALS), 192–93, 437. See also Amyotrophic lateral sclerosis
Loyalty, 35, 353–54, 415. See also Fidelity
Lubitz, Andreas, 347
Lying, 231, 328, 336–37, 396, 427, 455–56. See also Deception; Disclosure
Mackie, John, 393
Malpractice, 160. See also Harm; Medical errors; Nonmaleficence; Negligence
Mammography, 247
Manipulation, 102, 119, 129–30, 137–38, 231. See also Coercion, Persuasion
Marginal cases, the argument from, 73
Material principles of justice, 269–71
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McFall, Robert, 157–58, 222–23
Medical device regulation, 246–49
Medical errors, 34, 58n8, 334–36, 358, 373n31, 374n39. See also Disclosure; Malpractice; Professional–Patient
Relationships
Medical ethics, history of, 1, 8, 25n1, 27n14, 29n25, 35, 230, 232. See also Hippocratic tradition and oath;
Percival
Medical Ethics (Percival), 13, 35
Medical records, confidentiality of, 344, 376n63. See also Confidentiality
Mentally disabled persons. See Disability
Messenger, Gregory, 181
Metaethics, 2, 26n4, 387
Method and moral justification. See Justification
Military orders, conscientious refusal of, 43
Military physicians, obligations of, 355
Mill, John Stuart, 240–41, 272, 276, 388–89
Miller, Franklin, 121, 382n123
Minorities. See Bias; Vulnerable individuals and groups
Minors. See Children
Misconduct, reporting of, 35. See also Medical Errors
Mitochondrial DNA depletion syndrome, 180
Model for End-stage Liver Disease (MELD), 296–97
Mohr v. Williams, 120
Moral agency, 74–75, 86–87
Moral certitude, 434–35, 438–39
Moral change, 445–49
Moral character, 3–4, 31–57. See also Character
Moral diagnosis, 438
Moral dilemmas, 10–12, 223–24, 232, 303, 355, 412–13
Moral disagreement, 24–25
Moral diversity and disagreement, 24–25
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Moral epistemology, 2
Moral excellence, 31, 46. See also Moral ideals; Supererogation; Virtues
Aristotelian foundations of, 49–52
bias, impartiality, and, 91–92
of character, 49–57
in communities, 52–53
criteria of, 53–54
the cultivation of, 50–51
exceptional, in saints and heroes, 52–54
extensive sympathy and, 91–92
frustrations in achieving, 54–55
goals of, 51
importance of this subject, 50–52
living organ and tissue donation and, 55–57
models of, 52–55, 63n67
motivations of, 50
virtues and, 415
Moral ideals, 31. See also Heroes; Moral excellence; Saints; Virtues
actions performed from, 45
common morality and, 4
the continuum from obligation to ideals, 47–48
good character from, 45–49
obligations compared to, 6, 45–47, 157–58
particular moralities and, 6
their place in biomedical ethics, 45, 48–49
saintly and heroic, 52–53
supererogation based on, 46–48
Moral justification. See Justification
Moral knowledge, theory of, 2. See also Moral theories
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Moral point of view, 450, 454, 456, 464n60
Moral rules. See Rules
Moral status. See also Abortion; Animals; Elderly persons; Embryos; Fetuses; Vulnerable individuals and
groups
abortion and, 65, 90
advance directives and, 66, 195
of animal research subjects, 65, 67–79, 87
and the argument from marginal cases, 73
Bentham’s thesis about, 77
and biological differences in species, 68–70
of brain-dead pregnant women, 66, 93n7
capacities that determine, 68, 72–78, 86–87
character and, 90–92
of children, 65–6, 73, 75, 79–80, 88
of chimeras and hybrids, 69–70
cognitive properties as a basis of, 68, 72–74, 86
common morality and problems of, 92
and the concept of persons, 70–72
criteria of, 81–92
degrees and levels of, 78, 81–85, 87, 92
of embryos and fetuses, 66, 68–71, 79, 82–83, 85–86, 89–90
incompetence and assessment of, 66
loss of, 78, 83
moral agency as a basis of, 74–75, 86–87
moral change and the recognition of, 445–49
its moral significance, 88–89
multicriterial accounts of, 81
and natural kinds, 68
obligations based on, 65, 79–80
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practical guidelines governing, 84–88
the properties that confer, 67–78, 83, 85
relationships as a basis of, 78–80, 83, 87–88
rights and, 65–66, 80–90
the role of sympathy in assessing, 90–92
sentience as a basis of, 76–78, 80, 82–83, 85–87
specification and guidelines for, 84–88
surrogate decision makers and, 66, 111, 195–97
theories of, 67–80
of vulnerable individuals and groups, 65–66, 89–92
Moral theories. See also Ethics; Justice; Kantian theories; Moral status; Morality; Rights theories; Utilitarian
theories; Virtues
bottom-up models of method in, 432–39
common morality as a form of. See Common morality
communitarian theories of justice, 270–71, 275–77, 297
convergence of moral theories on basic norms, 416–17, 456
criteria for assessing, 386–88
explanatory power in, 387
egalitarian theories of justice, 255, 272, 274–75, 279, 281, 291–94, 310
foundationalism and, 443
Gert’s public moral system as an example of, 428–32, 446, 453–57, 458n3
justificatory power in, 387, 425–26
Jonsen and Toulmin’s theory of casuistry as an example of, 433–39, 461n23
Kantian, 394–400
of moral status, 67–80
output power in, 387
practicability in, 387–88
Rawls’s theory as an example of, 50, 274–77, 282–83, 297–300, 398, 425, 440
rights theory as an example of, 400–9
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top-down models of method in, 426–32
utilitarian, 388–94. See also Utilitarian theories.
virtue theories, 31, 35, 58n12, 409–16. See also Virtues; Character
Moral virtues. See Virtues
Moral worth
Kantian theory of, 75, 395, 399
virtue theories of, 412, 415
Morality. See also Common morality; Particular moralities
definition and nature of, 1–4
harm minimization in, 429, 431
as a normative and nonnormative concept, 1–2, 4–5, 454–56, 465n72
particular. See Particular moralities
as a public system, 3, 428–32, 458n3
universal, 3–6, 298–99, 434, 446, 450, 456
Morality: Its Nature and Justification (Gert), 431, 453
Moss, Alvin, 296–97
Motives and motivation. See also Intentions and the concept of intention; Virtues
in gift-giving, 32–33
and moral excellence, 50
virtues and, 32–33, 50, 410–13
Munthe, Christian, 250
Myelograms, 238
Nagel, Thomas, 398, 430
National Academy of Medicine (NAM), 229
National Bioethics Advisory Commission (NBAC), 117–18
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 319n55,
433–34
National health policies and the right to health care, 290–97
National Institute for Health and Clinical Excellence (NICE), 254
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Natural lottery (Rawls), 282–83. See also Lotteries
Natural rights, 420n36
Navajo traditional beliefs, 107
Nazi experimentation, 118. See also Nuremberg Trials
NBAC. See National Bioethics Advisory Commission
Need, principle of, 269
Negative rights. See Rights
Negligence, 159–61. See also Harm; Medical Errors; Nonmaleficence
New Jersey Supreme Court, 166
NICE (National Institute for Health and Clinical Excellence), 254
Nonbeneficial treatments, denial of, 242–43. See also Futililty (medical)
Nonconsequentialism, 394–95, 419n20
Nondisclosure, intentional, 125–30, 238. See also Disclosure; Informed consent
Nonmaleficence. See also Beneficence; Harm; Risks
advance directives and, 193–97
artificial nutrition and hydration (AN&H) and, 162, 165–66, 205n29
beneficence distinguished from, 156–58, 219
best interests and, 177–80
burden of treatments and, 174
controversial cases about removing life-sustaining treatment, 166
concept and definition of, 155–57
the concept of harm in the principle of, 158–59
futile interventions and, 171–74, 179–80
group harm in research and, 200–2
harm as a concept in the principle of, 155–59, 178–79, 193–97, 199–202. See also Harm; Risk; Suffering
in the Havasupai Indian case, 200–2, 403
killing and letting die as problems of, 155, 181–90
laws and public policy governing, 9–10, 157–58, 185–89
negligence and obligations of, 159–61
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nontreatment decisions and, 161–66
obligations of, 156–59, 161, 171–80, 189, 429
organ and tissue donation and, 157–58
overprotection in research and, 198–99
palliative care and, 166, 172, 184–85, 186
paternalism. See Paternalism
physician-assisted hastening of death and, 155, 167, 170, 181, 184–93, 213n92
the principle of, stated, 156–57
quality-of-life judgments and, 155, 175–80
research on stored biological samples and, 200–2
rule of double effect and, 167–71
Saikewicz case and, 175
slavery and, 448
slippery-slope arguments about hastened death and, 185–9
specifications of the principle of, 10, 158–59, 192
the standard of due care and, 159
surrogate decision making and, 111, 139–42, 195–97
underprotection of subjects in research and, 198–202
withholding and withdrawing life-sustaining procedures and, 155, 161–66, 171–74, 183–84, 192, 228, 242–43,
433, 437–38
Nonmalevolence, 3, 32, 34, 414
Nontreatment decisions, rules governing, 161–66
Normative judgments in testing for incompetence, 116
Normative theoretical justification in ethics, 452–54. See also Justification
Not All of Us Are Saints (Hilfiker), 54
Notification of HIV infection, 349–51
Novack, Dennis H., 18
Nozick, Robert, 273–74, 407
Nugent, Martha, 345
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Nuremberg trials, 118, 136
Nursing. See also Care; Professional–patient relationships; Roles, responsibilities, and practices
compassion as a focal virtue in, 38–39
conscientious refusals in, 43–45, 427
duties in, 47–49
ethics of care and, 35–37
fidelity conflicts and, 355–56
maintaining integrity in, 41
supererogation in, 47
virtues in, 35
Nursing homes, feeding tubes and, 206n31
Nussbaum, Martha, 278–79, 300
Nutrition, artificial, 162, 165–66, 205n29
Obligations. See also Codes; Communities; Disclosure; Duties; Families; Informed consent; Roles,
responsibilities, and practices
of beneficence, 48, 156–58, 217–19, 221–30, 256, 406, 429, 431–32
of care, 49
character and, 50–51
codes containing, 7–8, 229
of confidentiality, 342–47. See also Confidentiality
of continued access to investigational products, 227–28
correlativity of rights and, 405–8, 414, 422n51
of due care, 354–55
and duties of rescue, 221–24, 256
of expanded access to investigational products, 224–27
fiduciary, 11, 201, 346, 353, 364
impartiality and, 36. See also Impartiality
of justice. See Justice
Kantian theory of, 395–400
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language of, 405
limits of, 221
of military physicians, 355
moral dilemmas and, 10–12
moral ideals as not obligatory, 6, 45, 157–58
moral status and, 65, 79–80
of nonmaleficence, 156–58
in nursing, 35, 47
of partner notification of HIV infection, 350–51
their prima facie nature, 15–16, 29n27, 105
principle of respect for autonomy and, 105
in professional ethics, 7–8, 47
reciprocity-based justification of, 228–30
relationships establishing, 78–79
supererogation and, 46–48
of surrogate decision makers, 66, 111, 195–97, 242–43
of veracity, 327–28
virtues as corresponding to 413–15
ODWDA. See Oregon Death with Dignity Act
Office for Human Research Protections (OHRP), 198–99
O’Neill, Onora, 119, 398–99
Opioid use disorder (OUD), 247–48
Optimism, therapeutic, 133
Optional treatments compared to obligatory treatments, 171–80
Organ Procurement and Transplantation Network (OPTN), 325n113
Ordinary treatment, 204n16
Oregon Death with Dignity Act (ODWDA), 185, 187–88, 212n87
Oregon Health Services Commission (OHSC), 302
Oregon’s Basic Health Services Act, 302
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Organ and tissue donations
access to, 230
alcohol-related ESLF and, 295–97, 321n77, 322n81
communitarian theory of, 276–77
express or explicit consent for, 111
families as decision makers about, 111
ideal and obligatory forms of beneficence in, 55–56, 219, 222–23, 230
living, genetically unrelated, 55–57, 389–91, 395
nonmaleficence and, 157–58
public policies intended to increase, 276–77, 307
reciprocity-based approaches to, 230
Uniform Anatomical Gift Act (UAGA) for, 276
utilitarian theories about, 297
Organ transplantation
allocation of organs in, 230, 285–86, 296–97
citizenship and screening for, 308–9, 325n113
costs and funding of, 307
ideal beneficence and, 55–56, 219
justice and, 295–97, 321n77, 322n81
living donors for, 55–57, 389–91, 395
medical utility in selection for, 310
procedural rules in the ethics of, 14
racial disparities in assigning organs, 285–86
rationing and, 306–8
reflective equilibrium and distribution in, 441–42
risks in, 389–91, 395, 400–1, 409–10
screening for, 308–9
OUD. See Opioid use disorder
Output power, in moral theories, 387
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Overprotection of research subjects, 197–99
Overriding obligations in treating patients, 171–74
Overtreatment and undertreatment problems, 163–64
Pacemakers, 164, 254
Pain. See also Harm; Risk; Suffering
in animals in research, 23, 76–77
compassion for those experiencing, 38
cruelty as infliction of unnecessary, 19
harm standard for avoiding, 178
physician-assisted death to relieve, 170, 189, 191
sentience and the capacity for, 76–77
suffering distinguished from, 96n37
uncontrollable, 10
Palliative care, 166, 172, 184–85, 186
Paradigm cases, 435–37
Parents. See Children; Families
Parkinson’s disease, 367, 383n131, 383n132
Parsons, Talcott, 7, 27n12
Partiality, 36–37, 195. See also Bias; Impartiality
Particularism, 433
Particular moralities
common morality compared to, 5
development of, 442
empirical studies of, 449–50
moral change and, 445–49
moral ideals in, 6
the nature of, 5–10
professional moralities as, 6–9
Partner notification of HIV infection, 349–51
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Paternalism. See also Autonomy; Beneficence
antipaternalism and, 236–37, 241
autonomy in conflict with, 230–43, 261n40
beneficence-based justifications of, 105–6, 230–43
best interests and, 176–77, 234
blood transfusion and, 231
confidentiality breaches and, 347
consent to, 237
deception, lying, or manipulation as, 231, 432
definition of, 231–32, 259n23
denying nonbeneficial treatment as, 242–43
disclosure and, 238
harm caused by, 242–43
for harm reduction, 230–33, 238–39
interventions to prevent suicide as a form of, 239–42
justifications of, 234, 236–39, 242, 257
libertarian, 234–35
in medical ethics, 232
in medical futility cases, 171–74, 242–43
moral dilemmas of, 232
nonmaleficence and, 232
passive, 242
in policies, 233–36
prescription opioid abuse and, 248
religion and, 234, 239, 432
in research, 363
silicone breast implant policy as an example of, 246–47, 263n64
social norms and, 235–36
soft and hard types of, 233–39
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stigmatization and, 235–36
in surrogate decision making, 242–43
Patients’ rights, 11. See also Rights and rights theory
PCI. See Percutaneous coronary intervention
Pediatric oncology, 361
Pellegrino, Edmund, 38
Pelvic exams, 108–9
Penicillin, social utility in rationing of, 311–12
Percival, Thomas, 13, 35
Percutaneous coronary intervention (PCI), 132
Permission. See Consent; Informed consent
Persistent vegetative state (PVS), 11, 68, 81, 166, 183, 196, 242–43
Personal account model for genetic information, 352
Personhood, 70–72. See also Moral status
Persuasion, as a form of influence, 137. See also Coercion; Manipulation
Pharmacists and pharmaceutical companies, 44, 225–27, 286, 289, 299, 358–59, 367
Philanthropy, 32–33. See also Gift-giving; Moral excellence; Moral ideals
Phronesis (in Aristotle), 39
Physician-assisted hastening of death. See also Killing and letting die; Withholding and withdrawing life-
sustaining procedures
authority for, 189
autonomy of patients and, 188–89, 192
beneficence as a reason for, 188, 192
criminal liability in, 191
disabled persons and, 192–93
justification of, 184–93, 213n92, 442
laws and, 185–88, 212n87, 442
obligations and, 189
Organ Death with Dignity Act (ODWDA) and, 185
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to provide relief from pain or suffering, 189, 191
public policy risks of, 185–87
rule of double effect and, 170
refusal of treatment compared to, 188–89
slippery-slope arguments about, 185–88
the terminology of, 211n77
unjustified forms of, 190–91
utilitarian theory and, 392
valid requests by patients for, 188–90
withdrawing life-sustaining procedures compared to, 192
“Pirates’ Creed of Ethics or Custom of the Brothers of the Coast,” 443
Placebos
deception in using, 127–29
disclosure of the use of, 127–29, 364
placebo-controlled clinical trials, 366–68, 383n131, 383n132
therapeutic use of, 127–29, 364
The Plague (Camus), 46
Plato, 281
Play as a basic value in capability theories, 278
Pleasure, 76
Pluralism. See also Common morality
in common morality, 445
and diversity, 24–25, 456
justice and, 271, 276
in particular moralities, 4, 10
theories of, 456
Pointless interventions. See Futility (medical)
Positive rights and negative rights, 404
Potentiality, 83
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Poverty, 12, 52, 220, 223–24, 271, 280, 299–302. See also Justice
Powers, Madison, 279–80, 300
Practicability, in moral theories, 387–88
Practical ethics, 2. See also Applied ethics
Practical reason, in capability theories, 278
Practical wisdom, discernment and, in virtue theory, 39
Practice (medical) distinguished from research, 360–62
Pragmatism, 433, 453–54
Precaution and the precautionary principle, 187, 249–51, 264n75
Pregnant women, 66, 83, 85–86, 93n7, 167–71, 179, 427. See also Abortion; Embryos; Fetuses
Premature babies, 177
Prenatal diagnoses, 179
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research, 176
President’s Council on Bioethics, 68, 70, 142
Presumed consent, 108, 111
Preventable harm, 220, 224, 248–49, 334
Preventive care and statistical lives, 303
Prima facie obligations and rights. See also Obligations
and balancing moral norms, 15–16, 22, 82, 84, 126, 337, 352, 402–3
of beneficence, 219
conditions for overriding, 171–74
confidentiality and, 15–16, 352
duty of rescue and, 222
harm and, 15
killing–letting die distinction and, 182–83
principle of respect for autonomy and, 105
Ross on actual obligations compared to, 15–16
of veracity and staged disclosure, 327–33
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Primum non nocere, 9, 155
Principlism. See also Common morality
criticism of, 429, 432, 458n2, 464n68
ethics of care and, 37
origin of the term, 25, 428–29, 435
Priorities, setting, 301–4. See also Justice
Prisons and prisoners, 345, 355, 379n98. See also Vulnerable individuals and groups
Privacy. See also Access; Autonomy; Confidentiality; Law
access to persons’, 338–39
Anita Allen’s analysis of, 338, 374n44
associational and relational, 338
concept of, 338–39
confidentiality compared to, 337, 342–43, 347
consent and, 109
consequentialist approaches to, 339–40
decisional and informational forms of, 338
instrumental value of, 339
Judith Thomson’s analysis of, 339
in law, 338–40, 342
liberty protected by, 338
in professional–patient relationships, 337–42
proprietary, 338
public health surveillance balanced with rules protecting, 340–42
research subjects’, 200
respect for autonomy and, 340
rights of, 339–40, 342
Warren and Brandeis on, 339
zones and spheres of, 339–40
Privatized health insurance, 274, 293
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Procedural rules, 14–15, 29n26
Professional associations, 428
roles, practices, and virtues in, 33–35
violations of rules in, 41
Professional authority, rules of, 14
Professional ethics. See also Particular moralities
conflicts in, 8
as a form of particular moralities, 1, 6–9
moral dilemmas in, 11
obligations in, 7–8, 47
virtue of caring in, 35–37
Professional–patient relationships. See also Detachment; Disclosure; Dual roles in research of clinician and
researcher; Informed consent; Paternalism; Privacy; Roles, responsibilities, and practices; Virtues
advance directives and, 193–94, 141–42
benevolent deception in, 330–31
clinical ethics compared to research ethics in, 360–70
compassion as a focal virtue in, 38–39
confidentiality in, 342–53, 376n63
conflicts of interest in, 353–54, 356–60, 374n39, 380n103
conscientiousness as a focal virtue in, 42–45
consent in, 108–9. See also Informed consent
deception of third–party payers in, 336–37, 358
discernment as a focal virtue in, 39–40
disclosure of bad news in, 329–36
disclosure of genetic information in, 351–53, 378n88
disclosure of medical errors in, 34, 334–36, 358, 373n31, 374n39
due care obligations in, 159–61, 353–55, 358, 362
ethics of care in, 35–37
fidelity in, 353–60
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HIV infection notification and, 349–51
integrity as a focal virtue in, 41–42
physician-assisted hastening of death and, 155, 167, 170, 181, 184–93, 192
privacy in, 337–42
in randomized clinical trials (RCTs), 363–70
respect for autonomy in, 105–7, 332–33
role obligations and responsibilities in. See Roles, responsibilities, and practices
trustworthiness as a focal virtue in, 40
veracity and staged disclosure in, 327–37
virtues needed in, 33–35, 415–16
Profit, undue, 287, 289–90
Progressive organic brain syndrome, 165–66
Promises
breaching of, 17, 20, 162, 181
conflicting obligations and, 399
deception in, 396
fidelity and, 353
keeping, 3, 328, 392, 405, 446
sham surgery and, 367
veracity and, 328
Pronovost, Peter, 198–99
Property rights, 273–74
Pro tanto obligations, 15, 29n27. See also Prima facie obligations and rights
Proxy. See Surrogate decision making
Public health
allocation of resources for, 252, 254, 275, 300–1
autonomous choices that endanger, 105
diabetes surveillance programs in, 341–42
epidemics and, 341,
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global policy of, 297–300
HIV/AIDS protections in, 110, 341–42, 349–51
national policies of, 290–97
privacy rights and programs of, 340–42
veterinary, 403
Public moral system, 3, 428–32, 458n3. See also Common morality; Morality
Public policies. See also Law
definition of, 9
on disclosure, 329–30
on harm in research, 199
justification of, 185–88
on organ and tissue donation, 56–57, 307
moral norms underlying, 10
paternalism in, 233–35
on the right to health (globally), 297–300
on the right to health care (nationally), 290–97
on the right to privacy, 339
risk assessment underlying, 245
on silicone gel breast implants, 246–49
Public trust. See Trust; Trustworthiness
PVS. See Persistent vegetative state
Quality-adjusted life-years (QALYs), 252–56, 305
Quality-of-life judgments, 78, 155, 175–80, 252–56, 301–305, 341
Quarantine, 23–24
Queuing and procedural rules, 15
Queuing, in rationing policies, 310–11
Quill, Timothy, 21, 191–92
Quinlan, Karen Ann, case of, 166, 433, 435
Race, discrimination based on, 7, 283–86, 440. See also Bias; Discrimination
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Ramsey, Paul, 175–76, 353
Randomized clinical trials (RCTs), 125–26, 130, 363–70, 382n125
Rationality, 73, 235, 398, 453
Rationing. See also Allocation; Justice
by ability to pay, 274, 301, 304, 307, 308
by age, 305–6, 325n114
“fair-innings” argument and, 306
and heart transplantation, 306–8
justice in, 304–13
the language and definition of, 304–5
medical and social-utility criteria for, 309–13
organ transplantation and, 306–8
queuing mechanisms in 310–11
of scarce treatments, 308–13
screening candidates for, 308–9, 325n113
triage in systems of, 304, 312–13
types of, 304–5
Rawls, John, 50, 274–77, 282–83, 297–300, 398, 425, 440
RBA. See Risk-benefit analysis
RCTs. See Randomized clinical trials
RDE. See Rule of double effect
Reasonable person standard, of disclosure, 124–25
Reciprocity-based justification, 228–30. See also Beneficence; Justification
Rectal exams, 108–9
Rectification, justice in, 273–74
Redress, acts and rules of, 283–86
Reflective equilibrium and justification, 439–44, 452
Refusal of treatment, 43–45, 111–12, 122, 134–35, 178–79, 182–83, 188–89, 197, 240, 404
Regret, moral, 16–17
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Rehabilitative medicine, staged disclosure in, 331–32
Relational autonomy, 104, 106–8, 144nn9–10
Relational privacy, 338
Relationships, moral status based on, 78–80, 83, 87–88. See also Professional–patient relationships
Religion
bizarre actions based on, 115, 239
commitments to the sanctity of life in, 42
criteria of saints found in, 52–53
and conflicts with professional integrity, 42
the diversity of traditions of, 6, 201
freedom of, 402, 432, 459n15
Islamic beliefs, 6
Jehovah’s Witnesses beliefs, 103–4, 112, 135–36, 239, 354, 459n15
paternalism and, 234, 239, 432
prohibitions of discrimination against, 7
Roman Catholic. See Roman Catholic beliefs and casuistry; Rule of double effect
suicide attempts and, 239
Renal transplantation, 285–86
Republic (Plato), 281
Requirements, 406. See also Obligations
Rescue, duty of, 221–24, 256
Research. See also Autonomy; Clinical trials; Experimentation; Roles, responsibilities, and practices; Vulnerable
individuals and groups
abuses of subjects in, 88–89, 138
animal subjects in, 69–70, 76–80, 82, 86–92
children in, 65–6, 88–89, 435
chimeras in, 69–70
compassionate use programs in, 225–27
confidentiality in, 200, 345
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conflicts of interest in, 356–60, 362–63, 369
consent problems in, 125–29, 130, 200–2, 364–65. See also Informed consent
continued access to experimental drugs in, 227–28
disclosure in, 123, 364,
discrimination in, 286–90
as distinguished from practice, 360–62
dual roles of clinician and researcher in, 362–63
economically disadvantaged populations in, 286–90
embryos in, 427–28
expanded access to, for patients, 224–27
exploitation problems in, 139, 286–90, 381n119
fetuses in, 89–90
generalizable knowledge, its role in, 361–62
harm in, 199–202
human-subject conditions in, 362–63
laws governing, 225
overprotection of subjects in, 199–200
oversight and regulation of, 9–10, 360, 362
privacy and, 200
research ethics distinguished from clinical ethics, 360–70
risk in, 87, 130
stem cell, 69–70, 82–83, 93n12
on stored biological specimens, 200
Tuskegee syphilis study, 138
underprotection of subjects in, 199
undue inducement in, 287–88
undue profit in, 287, 289–90
vulnerable individuals and groups in, 89–90
withholding information from subjects of, 129–30. See also Informed consent
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Residual obligations, 16–17
Respect for autonomy, principle of, 13, 17–20, 23–24, 40, 74, 99–112, 119, 192–94, 237, 328, 332–33. See also
Autonomy
Respirators, stopping of, 162, 166, 242–43
Rewards and offers, 55–56, 138, 286, 288–89, 334
Richardson, Henry, 17, 19
Rights and rights theory. See also Autonomy; Justice; Law; Prima facie obligations and rights
claims of the primacy of rights, 407
communal values in conflict with, 402, 408. See also Communitarianism
the concept of rights, as justified claims, 400–2, 406
confidentiality rights, 11, 342–43, 401. See also Confidentiality
a constructive evaluation of, 408–9
the correlativity of obligations and rights, 405–8, 414, 422n51
a critical evaluation of, 408
Dworkin’s theory of, 402–3
equality and, 268–69, 274
forfeiting of, 294–97
health care rights, 267–68, 272–75, 280–82, 290–300, 401, 404
human rights, 4, 16, 202, 268–69, 272, 407–9, 420n36
of incompetent, disadvantaged, and unidentified populations, 403–4
informed consent as a matter of, 152n96. See also Informed consent
infringements of, 403
the language of, 401–2, 405
liberty rights, 15, 17, 24, 81, 273, 274, 407. See also Autonomy; Liberty; Voluntariness
moral status and the conferral of, 65–66, 79–90
as a type of moral theory, 400–9
natural, 420n36
Nozick’s account of, 407
in organ transplantation, 400–1
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positive and negative rights, 404, 407
as prima facie, not absolute, 15–16, 84, 347, 402–3
priority of, 16, 407
privacy rights, 339–40
property rights, 273–74
the right to die, 185
Shue’s theory of, 404
specification of, 404, 407–8
trumps as a model for, 402–3
United Nations declaration of universal rights, 401
of vulnerable individuals and populations, 403–4
welfare rights, 403–4
women’s rights, 447
Risk-benefit analysis (RBA), 244–49
Risk(s). See also Disclosure; Harm; Nonmaleficence; Pain; Suffering
acceptable, 245
assessment of, 244–51, 348
benefits and costs balanced with, 243–56
in compassionate use programs, 226
in competence determinations, 117–18
conflicts of interest and their, 357
in continued access programs, 228
de minimis, 245
duty of rescue and levels of, 222
estimation and evaluation of, 244–45
in health insurance, 294–95
IRBs’ weighing of, 243
management of, 244–45
the nature and concept of, 244
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negligence and, 159–61
in organ and tissue donation, 56, 389–91, 395
in organ transplantation, 389–91, 395, 400–1, 409–10
of physician-assisted dying policies, 186–87
of placebo-controlled trials, 368
precaution, the precautionary principle, and, 187, 249–51, 264n75
public perception of, 249
in research, 87, 130, 202
saints taking of, 53
unacceptable, 245
of undue inducements, 288
Roles, responsibilities, and practices. See also Codes; Professional–patient relationships; Virtues
conception of, in an ethics of care, 37
in professional codes, 6–8
in professional–patient relationships, 337
standards of, in biomedical fields, 33–35
virtues as important in, 33–35, 415–16
Rollin, Ida, 241
Roman Catholic beliefs and casuistry, 6, 103–4, 168, 204n16
Ross, W. D., 15–16, 29n27, 220, 417, 430–31
Rule of double effect (RDE), 167–71
Rules. See also Codes; Law
of authority, 14
of beneficence compared to nonmaleficence, 156–58, 219
coherence of principles and rules, 440–43
of common morality, 444–45, 447–48, 455
of confidentiality, 343–44
on conflicts of interest, 359
of informed consent in institutions, 118, 120–21
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moral change in, 446–47
about nontreatment decisions, 161–66
of privacy, public health surveillance and, 340–42
procedural, 14–15, 29n26
of professional associations, violations of, 41
specification of, 17–19, 430
types of, 14–15, 17–19
for surrogate decision making, 139–42, 433
Rule utilitarianism, 391–92
Sacrifice, 41–42, 47, 218–21, 257n9
Saikewicz, Joseph, 175
Saints. See also Heroes; Moral excellence; Virtues
criteria of, 53–54
examples of, 53
extensive sympathy in, 91
heroes compared to, 52, 54
as models of moral excellence, 52–55
the moral ideals of, 52–53
risks taken by, 53
supererogation in, 45–49
SARS. See Severe acquired respiratory syndrome
Sassall, John, 52–53, 63n61
Savulescu, Julian, 70–71, 180
Scarce treatments, rationing of, 308–13
Schiavo case, 166
Schneider, Carl, 106
Screening, 109–11, 284, 308–9, 325n113
Self-awareness, self-consciousness, and self-recognition, 72–74
Self-deception, 410
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Self-experimentation, 48
Self-governance, 100
Self-interest, 12, 49, 53, 336, 353, 357, 359, 440. See also Conflict of interest
Self-referral and fidelity to patients, 357
Self-sacrifice, 47–48
Sen, Amartya, 277–78, 300
Sentience and moral status, 76–87
Setting priorities in health care, 301–4
Severe acquired respiratory syndrome (SARS), 23–24, 49
Severe dystrophic epidermolysis bullosa, 177
Sexually transmitted diseases (STDs), 129, 341
Sham surgery, in placebo-controlled trials, 367–68
Shared decision making, informed consent contrasted to, 119–20, 148n52
Shimp, David, 157–58, 222–23
Shue, Henry, 404, 421n46
Sidgwick, Henry, 327, 330, 461n23
Siegler, Mark, 296–97, 343
Silicone breast implants, 246–49, 263n64
Simplicity in moral theories, 387
Singer, Peter, 220–21, 298–99
Skepticism about theories, 16, 50, 431, 445, 449, 465n74
Slavery, 88, 447–49
Slippery-slope arguments, 185–88
Smoking, 235
Social justice, 8, 278–79. See also Justice
Social lotteries, 282–83
Social norms, paternalism and, 235–36
Social utility, for purposes of rationing, 311–13
Social worth, judgments of, 312
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Soft paternalism. See Paternalism
Specification. See also Justification
advance directives and, 14, 17, 20
and balancing moral norms and, 10, 15–20, 21–23, 82, 430–31, 456–57
common morality and, 456–57
conflict resolution and, 18–19
informed consent and, 18
justification of, 19, 22–24, 427, 456–57
of moral norms, 17–19
moral status and, 84–88
regarding the patient’s priority in clinical care, 18
of rights, 407–8
Specific beneficence, 219–21, 228–29. See also Beneficence
Specific consent, 108–9, 200
Split-level theories of autonomy, 100–2
Spring, Earle, 163, 174
Staged disclosure, 330–32
Statements of risk, 244
Statist theories of justice, 297–300
STDs. See Sexually transmitted diseases
Stem cells, in research, 69–70, 82–83, 93n12
Sterilization, 131
Stigmatization, paternalism and, 235–36
Stored biological specimens for future research, 200
Structural Injustice: Power, Advantage and Human Rights (Powers and Faden), 280
Subjective standard of disclosure, 125
Substantive rules, 14
Substituted judgment standard, 139–40
Suffering. See also Harm; Pain; Risk
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of animals in research, 23, 76–77
compassion and sympathy for, 37–39
cruelty as infliction of unnecessary, 19
harm standard for avoiding, 178
pain distinguished from, 96n37
palliative care to alleviate, 166, 172, 184–85, 186
physician-assisted death to end, 170, 189, 191
sentience and the capacity for, 76–77
suicide intervention and, 241–42
Suicide, 181, 190–91, 211n77, 239–42. See also Killing and letting die; Physician-assisted hastening of death
Suicide prevention, 239–42
Sunstein, Cass, 234
Supererogation, 46–48. See also Moral ideals
Surgery, placebo-controlled trials in, 367
Surgical errors, 34. See also Malpractice; Medical errors
Surrogate decision making. See also Advance directives
authority rules for, 14
best interests standard for, 141–42, 176–77, 234
burdens of, 196
conflicts of interest in, 195–96
do not resuscitate (DNR) orders and, 162, 165
families and, 195–96
futile interventions and, 173–74, 179–80
informed consent and, 66
nonmaleficence and, 195–97
obligations of, 66, 139–42, 242–43
partiality and impartiality in, 195
paternalism and, 242–43
professionals and, 196–97
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pure autonomy standard for, 140–41
substituted judgment standard for, 139–40
withholding and withdrawing life-sustaining procedures and, 155, 161–65
Surveillance, 340–42
Sustenance technologies, 162, 165–66
Sympathy. See also Compassion; Empathy; Moral status
capacity for, 37, 90–91, 410
compassion and, 38
extensive, compared to limited, 89–92
impartiality and, 90–92, 98n66
moral value of, 31–32, 37–39, 90–92, 220, 399
for vulnerable individuals and groups, 90–92
Tacit consent, 108, 111. See also Informed consent
Talking with Patients and Families about Medical Error (Truog), 335
Tarasoff v. Regents of the University of California, 10–11, 223, 346, 377n70
Task Force on Organ Transplantation, 307–8
Taxes
justice and, 297–98
“sin,” 235
Taylor, Charles, 276
Tay-Sachs disease, 177
Terminal sedation, 170
Thaler, Richard, 234
Theoretical justification, normative. See Justification
A Theory of Justice (Rawls), 398
The Theory of Morality (Donagan), 398
Therapeutic misconception, 132–33, 151nn89–90, 363
Therapeutic privilege, 126–27, 149n65
Therapeutic research, 363
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Thomson, Judith, 339
TIA. See Transient ischemic attack (TIA)
Top-down models of method and justification, 426–32. See also Justification
Toulmin, Stephen, 434–35, 438
Transgenic animals, 69
Transient ischemic attack (TIA), 165
Triage, for rationing of health care, 312–13
Tricuspid atresia (TA), 179
Trumps, rights as, 402–3
Truog, Robert, 311, 335
Trust
concept of, 40
culture of, 40
fostering and maintaining, 21, 128, 328, 352, 392
inordinate, 136
loss of, 11, 40, 128, 187, 202, 334, 347
in norms in common morality, 458
in patients and subjects, 21, 200
in health professionals, 35, 38, 40, 100, 128, 187, 328, 334–35, 344
public, 24, 53, 117, 187, 313, 334
vulnerable individuals and, 40
Trustworthiness, as a focal virtue, 40
Truthfulness, 336–37, 389–92, 395, 400–1, 409–10, 427, 438. See also Disclosure; Honesty; Informed consent;
Veracity
Tubal ligation, 242
Tuskegee syphilis study, 138, 435
Unapproved drugs, the need for access to, 45, 224–28
Understanding. See also Autonomy; Informed consent
autonomy and, 102–3, 130–36
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decision aids for, 134
framing effects and, 133–34
information processing problems and, 133–34
informed consent and, 130–36
nature of adequate and inadequate, 130–34
of novel or specialized information, 131–32
and problems of information processing, 133
and problems of nonacceptance and false belief, 134–35
and problems of waivers of informed consent, 135–36, 152n96
in professional–patient relationships, 130–32
of subjects in randomized clinical trials, 130, 363–64
of risks, 131–34
studies of, 132–33
therapeutic misconception and, 132–33, 151n90
therapeutic optimism by patients, 132
Undertreatment, 163
Undue inducement in research, 287–88
Undue profit in research, 287, 289–90
Uniform Anatomical Gift Act (UAGA), 276
United Nations, 298, 401
United States Supreme Court, 270, 338, 425–26
Universal Declaration of Human Rights of United Nations, 401
Universalizability, 399. See also Generalizable knowledge
Universal morality, 3–6, 298–99, 428, 434, 446, 450, 456. See also Common morality
Unresponsive wakefulness syndrome, 81. See also Persistent vegetative state
Utilitarian theories. See also Allocation; Beneficence; Justice
absolutism in the basic principle of, 392
act and rule types of, 391–92
balancing of competing considerations in, 392
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beneficence as central to, 218, 255, 394
the concept of utility in, 389
consequentialism in, 388
a constructive evaluation of, 394
a critical evaluation of, 392–94
goal of maximizing good in, 388–90
hedonistic, 389
immoral preferences and actions as problems for, 393
its impersonal and impartial nature, 388
intrinsic goods and, 389
of justice, 270–73, 297
Mill and Bentham as classical sources of, 388–89
organ donations distributed by, 297, 389–91
physician-assisted death and, 392
principle of utility in, 217–18, 388, 389, 392
problems of overdemandingness in, 393
problems of unjust distributions in, 393–94
Singer’s account of, 220–21, 298–99
social utility and rationing, 311–13
value theory in, 389
value of the theory for public policy, 394
welfare and, 272, 388, 394
Worthington Hooker’s commitments to, 391–92
Utility, principle of, 217–18, 388–89, 392
Vaccines and Vaccination, 53, 135, 353, 402
Value of life, 252–56
Values, settled, 436–37
Vegetative state. See Persistent vegetative state (PVS)
Ventilators, disconnection of, 192–93, 437–38
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Veracity in professional practice, 8, 327–37. See also Disclosure; Truthfulness
Veterinary public health, 403
Vices and virtues, 4, 33, 411, 446, 455
Virtues. See also Character; Heroes; Moral excellence; Moral ideals; Saints
Aristotle’s philosophy of, 39–40, 46, 409–10, 415–16
of caring and care ethics, 35–37
character and, 32–45, 412–13, 415
codes centered on, 34–35
common morality as embracing, 3–4, 32, 411
compassion as a focal virtue, 38–39
the concept and definition of virtue, 32–33, 411–12, 57n3
conscientiousness as a focal virtue, 42–45
the correspondence between virtues and obligations, 414
constructive evaluations of virtue theory, 416
critical evaluations of virtue theory, 415
discernment as a focal virtue, 39–40
ethics as grounded in, 31, 58n12, 409–10, 413
friendship as a virtue, 399, 412
Hume’s philosophy of, 409, 411, 416
integrity as a focal virtue, 41–42
moral, 31–33, 411–15
moral excellence and, 91–92, 415
motives as central to, 32–33, 410–12, 413
obligations and right action as related to, 32, 46–48, 410–15
in organ donation and transplantation, 55–57, 409–10
Percival’s Medical Ethics, a classic work on, 13, 35
in professional roles and practices, 33–35, 415–16
the rejection of rules in some accounts of, 413–14
right action and proper motive in theories of the, 410–11
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the special status of, 412–13
supererogation and, 46–47
trustworthiness as a focal virtue, 40
as a type of moral theory, 31, 57, 409–16
vices and, 4, 33, 411, 446, 455
Voice of care in the ethics of care, 36
Voluntariness, 55–56, 102–3, 136–39, 350. See also Autonomy; Liberty
Vulnerable individuals and groups. See also Animals; Children; Disability; Elderly persons; Ethnicity
animals in research as an example of, 69–70, 76–77, 79, 86–90
categorical exclusions of, in research, 287
discrimination against, 286–90, 303
economically disadvantaged populations in research, 286–90
exploitation of, in research, 139, 153n108, 286–90, 381n119
fetuses in research as an example, 89–90
group harm in research, 200–2
impartiality in judgments about 16, 90–92
justice for, 286–90, 319n55
manipulation of, 138–39
moral status questions about, 65–66, 89–92
protection of, 66, 73, 79, 89–90, 287
research guidelines for, 89–90
rights of, 403–4
sympathy for, 90–92
unclarity in the language of, 287
undue inducement of, 287–90
Waivers of informed consent, 126, 135–36, 152n96
Wanglie, Helga, 242–43
Warnock, G. J., 328
Warnock Committee (Committee of Inquiry into Human Fertilisation and Embryology), 82
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Warren, Samuel, 339
Weighing. See Balancing moral norms
Welfare
capability theories and, 277
rights of, 403–4
utilitarian theories and, 272, 388, 394
in well-being theories of justice, 270–71, 279–80
Wertheimer, Alan, 121
What Really Matters (Kleinman), 54–55
White, Byron, 126
WHO. See World Health Organization
Wilkinson, Dominic, 180
Williams, Alan, 254–55, 306
Williams, Bernard, 42, 393, 398
Williams, Glanville, 241
Willingness to pay (WTP), 253
Withholding and withdrawing life-sustaining procedures, 155, 161–66, 171–74, 183–84, 192, 228, 242–43, 433,
437–38
Women’s rights, 447. See also Equality; Feminist thought; Rights
World Health Organization (WHO), 299, 350
World Medical Association, “Declaration of Geneva,” 327, 362
World Trade Organization, 299
Wronging and harming compared, 158
WTP. See Willingness to pay
Zagury, Daniel, 53
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The Way of Medicine
NOTRE DAME STUDIES IN MEDICAL ETHICS AND BIOETHICS
O. Carter Snead, series editor
The purpose of the Notre Dame Studies in Medical Ethics and Bioethics
series, sponsored by the de Nicola Center for Ethics and Culture, is to
publish works that explore the ethical, cultural, and public questions arising
from advances in biomedical technology, the practice of medicine, and the
biosciences.
The Way of Medicine
Ethics and the Healing Profession
FARR CURLIN
and
CHRISTOPHER TOLLEFSEN
University of Notre Dame Press
Notre Dame, Indiana
Copyright © 2021 by the University of Notre Dame
Notre Dame, Indiana 46556
undpress.nd.edu
All Rights Reserved
Published in the United States of America
Library of Congress Control Number: 2021942665
ISBN: 978-0-268-20085-5 (Hardback)
ISBN: 978-0-268-20086-2 (Paperback)
ISBN: 978-0-268-20084-8 (WebPDF)
ISBN: 978-0-268-20087-9 (Epub)
This e-Book was converted from the original source file by a third-party
vendor. Readers who notice any formatting, textual, or readability issues are
encouraged to contact the publisher at undpress@nd.edu
mailto:undpress@nd.edu
To our spouses, Kimberly Curlin and Laurie Tollefsen,
who merit more thanks and praise
than we can possibly give here
CONTENTS
Preface: A Perplexed Physician
Acknowledgments
Introduction: A Profession in Crisis
ONE The Way of Medicine
TWO The Requirements of Practical Reason
THREE The Doctor-Patient Relationship
FOUR Autonomy and Authority
FIVE The Rule of Double Effect
SIX Sexuality and Reproduction
SEVEN Abortion and Unborn Human Life
EIGHT Medicine at the End of Life
NINE Last-Resort Options
TEN Conscientious Medicine
Notes
Index
PREFACE
A Perplexed Physician
I sensed early in my medical training that something had gone wrong at the
heart of our profession. I came to medical training confident that caring for
those who are sick would readily fit into my vocation as a Christian, not
because Christians have a lock on healing—by no means. Rather, because
everyone—whether Jew, Christian, Muslim, atheist, or other—knows that
healing is good work, even “God’s work.” I knew that modern physicians
had gotten involved in a few practices—elective abortion and assisted
suicide in particular—opposed both by traditional Christianity and by
traditional medical ethics. But these practices were on the margins, I
thought, exceptions to medicine’s otherwise consistent orientation toward
healing. It did not take long for me to realize that I was mistaken—that
these overtly controversial practices expressed deeper changes at the heart
of the medical profession. Having come over the second half of the
twentieth century to “provide” all kinds of interventions that were not so
obviously a part of healing those who are sick, physicians could no longer
say what it meant to heal. In seven years of medical school and residency
training, I do not recall a medical educator ever encouraging me or my
fellow trainees to consider what medicine is for.
How could we clinicians-in-training find our way if our teachers could not
tell us where that way leads? We learned to take our bearings by setting
aside the question of what medicine is for and instead focusing on getting
where we were asked to go as efficiently and effectively as possible. Those
were the heady days of evidence-based medicine. Medical educators
advocated “the conscientious, explicit, and judicious use of current best
evidence in making decisions about the care of individual patients.”¹
Unfortunately, our teachers had much less to say about what norms we
should conscientiously uphold and by what standards we should evaluate
whether our use of evidence had been judicious. The resulting vacuum was
filled with the default norm of contemporary medicine: support the
autonomous choices of patients as long as doing so is not illegal, infeasible,
or unequivocally harmful.
Indeed, the language of conscience and judgment proved to be the residue
of a tradition of practice that the profession of medicine seemed determined
to leave behind—a tradition associated with paternalism, patriarchy, and
other specters of a repressive past. To avoid recapitulating the injustices of
that past, we learned to ask not what ought to be done but who decides what
ought to be done. After all, what would give a physician the authority to
judge what is good for someone else? Shouldn’t patients decide what
happens to their bodies? We were taught various ethical principles we might
invoke to describe a clinical decision, but we also learned that in the end
only the patient could decide which of these principles should govern in
their particular case. Being “patient-centered,” we discovered, meant
respecting patients’ right to judge what is good for them. So we made
patient preferences our guide, and we resisted the temptation to impose our
own values under the pretense of conscience and clinical judgment. The
safest route was to separate the personal from the professional, keeping the
former from intruding on the latter.
I have never made peace with this notion of separating the personal from
the professional. I had set out to practice medicine because caring for the
sick seemed to fit into the Christian vocation to love God and one’s
neighbor. In training, however, Christian commitments largely were
construed as “personal values” that must be kept from interfering with my
professional obligations. While I puzzled over how that could be so, I
observed that separating the personal from the professional reified the
sterility and detachment of clinical encounters that left patients dissatisfied
and physicians dispirited.
How did we end up with this idea that medicine requires
compartmentalizing the personal away from the professional? How did
medical educators end up teaching that good physicians must be willing to
be bad Christians, Jews, or Muslims?
I did not find satisfying answers to these questions, but who was I to
challenge the status quo? This ancient profession went on before me and
will go on after me, whether I like it or not. Perhaps in time I would see that
by keeping my personal and professional lives separate, focusing on
scientific data, and deferring to others to tell me what to pursue, I would
become a better physician than I had imagined. I would find that to love my
neighbors means to do what they ask me to do even when that goes against
my better judgment. And if I could not reconcile my personal moral
sensibilities with the standards of the profession, I could find a different line
of work. I had not been conscripted, after all.
But further experience only confirmed my misgivings that the medical
profession had lost its way. Indeed, in the name of respect for patient
autonomy, the profession seemed to have given up any claim to know
where that way should lead. The medical profession trains its members to
defer to patients regarding what goals physicians are to pursue, reserving to
the clinician the authority only to insist that those ends be pursued in a
scientifically informed and effective manner. So, for example, a physician
cannot know whether he should sterilize a patient or offer her assisted
reproductive technologies until and unless the patient tells him what she
wants. The physician can decide, however, which surgical technique is most
effective for sterilization and which exogenous hormones will effectively
hyperstimulate the ovaries. Many medical ethicists likewise have
abandoned any claim to know what medicine is for. As a member of the
clinical ethics faculty at a premier academic medical center, I joined
colleagues in spirited debates about who was authorized to make a
particular clinical decision, but we almost never discussed what that person
should decide, or why. We had learned to police ourselves to avoid the
presumption of claiming to know what good medicine required for this or
that patient.
Meanwhile, in the hospital I watched countless physicians bend over
backward to give patients and their family members all the options for their
cases and to avoid “imposing” any judgment regarding what was best for
the patients. Physicians routinely would tell family members of critically ill
patients that the decision to continue or discontinue life-sustaining
technology was not the physicians’ to make, or even the family’s to make.
Rather, all were obligated to set aside their judgment about what would be
good for the patient and instead choose what the patient would choose if the
patient could choose for himself. When families did not choose as the
physicians hoped they would, the physicians would retreat to their
workrooms to grumble about unrealistic family members who were in
denial. Doctors resent continuing unreasonable efforts to keep patients
alive, but they do not see any other option. They have internalized the
axiom that only patients, or their surrogates, can say what is good for them.
The same demoralized ethos carried over into the outpatient setting, where,
for example, physicians were long taught that the patient’s pain was what
the patient said it was, and the physician was obligated to treat that pain
until the patient said it was relieved. Those of us who practice hospice and
palliative medicine have been taught that relieving pain and other
symptoms is not enough; we are also to maximize quality of life and to
minimize suffering. No one but the patient can say whether we have
achieved that goal, so we must follow patients’ preferences closely,
including their preferences regarding how and when to die.
Physicians have become particularly reticent to say what medicine is for in
the domain of sexuality and reproduction. A patient once asked me to
prescribe Viagra because he was having difficulty sustaining an erection
when having sex with his wife, though he had no such problems when with
his mistress. My colleagues were ambivalent as to how I should respond.
On one hand, it seemed strange to facilitate this man’s infidelity to his wife.
On the other, the drug was safe, legal, and permitted by the profession; who
was I to judge? A homosexual man whom I had treated for high blood
pressure asked me to help him and his partner figure out how to get a baby
through in vitro fertilization (IVF) using an anonymous egg donor and a
gestational surrogate. My colleagues were agreed that I should
accommodate his request, at least by referring the patient to the assisted
reproductive technology clinic. For a few years, I took night calls for my
university’s student health service, and some nights more students called to
ask for prescriptions for “emergency contraceptives” than called because
they were sick. I found myself asking, “What does giving people all of
these things they want have to do with practicing medicine?”
One might think that deferring to patients about the goals of medicine
would lead to greater patient satisfaction, but that is not what I have
observed. Instead, by relinquishing their professional authority, physicians
seem to have given third parties a free hand to intrude on and govern the
physicians’ experiences and their patients’, to the chagrin of both. Today,
patients and clinicians alike are harried by impersonal forces along paths
they hardly understand. Patients ask for whatever the latest pharmaceutical
commercial, or the latest social fashion or anxiety, recommends.
Meanwhile, doctors submit to the demands of Medicare and other insurers,
bean counters tracking relative value units (RVUs), and, most of all, the
electronic medical record. Practitioners may start by asking a patient, “How
can I help you today?,” but they soon turn their attention to the invisible
social engineer standing in the corner of every exam room, armed with a
checklist the doctor must follow in order to ensure that she provides quality
care that is safe and “value-based.” Neither patients nor physicians call the
shots, and both feel helpless to change the system.
Helplessness leads both to demoralization and to detachment. Why would
anyone want to practice medicine if doing so meant setting aside their
religious aspirations, their ethical judgment, and their longing to connect
with patients on a human level? Why would anyone aspire to serve as an
efficient cog in a vast, bureaucratically structured healthcare industry? In
this situation, physicians and other healthcare practitioners give up the quest
to find—much less pursue—what medicine is for. The work to which
medical practitioners thought they were called becomes a job to tolerate.
Their patients present them not with the privilege of cooperating in pursuit
of healing but with the burden of satisfying demands that clinicians
frequently resent. Medical practitioners, then, need self-care and work-life
balance to mitigate the threat of medicine to their integrity and their
flourishing and to keep them from walking away from the practice of
medicine altogether. That, at least, is how it has seemed to me.
If you are a physician and this account resonates at all with your own
experience, this book is for you. Moreover, if you long to recover a way of
practicing medicine that can truly be seen as a “calling,” intrinsically
rewarding work to which you can happily commit the best of your time,
attention, and energy, then read on. We hope you will learn to better see and
to say what you know, and so be equipped to continue the worthy adventure
of practicing medicine.
THIS BOOK HAS been written by a practicing physician, Farr Curlin, and
a philosophy professor, Christopher Tollefsen. It grew out of a seminar we
have taught together for almost ten years, but it is inspired by what I have
experienced and observed in my training and practice as a clinician and
medical ethicist. Some readers may recognize in my account their own
unease and uncertainty about what medicine has become.
Farr Curlin, MD
ACKNOWLEDGMENTS
This book originated in an annual week-long seminar in medical ethics that
we have taught since 2011, initially sponsored by the Witherspoon Institute
in Princeton, New Jersey, and now by the Arete Initiative at Duke
University. We are indebted to those whose vision and leadership have
made the seminar possible, especially Robby George and Luis Tellez, as
well as those who have given hospitality to the scores of clinician trainees
who have joined us over the years, including Patrick Hough, Felix Miller,
Phil Braun, and John Rose. And we are indebted to our students in those
seminars, who have committed their lives to the practice of medicine and
whose sincere questions, contentions, and arguments made invaluable
contributions to this book.
Medicine, as we argue here, is a practice, as is the doing and teaching of
philosophy. We could never have gotten started in understanding either
practice without the help of our teachers, among whom Farr notes
particularly Drs. Carl Kraus, Mark Siegler, Daniel Sulmasy, and Leon Kass;
Chris acknowledges with gratitude three philosophers who have died since
our work on this book began: Joseph Boyle, Germain Grisez, and H.
Tristram Engelhardt.
As this book has taken shape over the past several years, a number of
colleagues have gifted us with their critiques of our arguments. We thank
Jason Amaral, Ryan Anderson, Jeff Baker, Jeffrey Bishop, Chip Denton,
Lydia Dugdale, H. Tristram Engelhardt, Nick Epley, Margaret Houck, Ana
Iltis, Lauris Kaldjian, Daniel Kim, Scott Kim, Warren Kinghorn, Brett
McCarty, Abraham Nussbaum, Brian Quaranta, Jon Tilburt, John Yoon, and
anonymous reviewers of the University of Notre Dame Press. None of these
agree with us on every point, and some disagree with us on major points.
The deficiencies of the book are our own, but these share credit for any of
the book’s merits, as do those who have helped us in the editing process,
including Judith Heyhoe, Luke Olsen, and Bob Land.
Farr is particularly grateful to colleagues at the Trent Center for Bioethics,
Humanities, and History of Medicine at Duke University and those in Duke
Divinity School’s Initiative on Theology, Medicine, and Culture (TMC).
Both of these institutional spaces foster unusually fertile environments for
inquiring about the moral and theological dimensions of the practice of
medicine. Chris thanks the James Madison Program at Princeton University,
the Eudaimonia Institute at Wake Forest University, and his own University
of South Carolina. Each has been home to some of the drafting of this book,
and colleagues and friends at each deserve much thanks.
We have written about many of the ideas in this book in other places. A
number of the arguments and examples appear elsewhere, in particular the
following, which are listed in the order in which they were published:
Farr Curlin, “Hospice and Palliative Medicine’s Attempt at an Art of
Dying,” in Lydia S. Dudgale, ed., Dying in the Twenty-First Century:
Toward a New Ethical Framework for the Art of Dying Well (Cambridge,
MA: MIT Press, 2015), 47–66.
Y. Tony Yang and Farr A. Curlin, “Why Physicians Should Oppose Assisted
Suicide,” Journal of the American Medical Association 315, no. 3 (2016):
247–248.
Christopher Tollefsen, “Abortion,” in Bob Fisher, Ethics, Left and Right:
The Moral Issues that Divide Us (New York: Oxford University Press,
2020), 340–48.
Farr A. Curlin and Christopher O. Tollefsen, “Medicine against Suicide:
Sustaining Solidarity with those Diminished by Illness and Debility,” in
Christian Bioethics, forthcoming.
Christopher Tollefsen and Farr Curlin, “Solidarity, Trust, and Christian
Faith in the Doctor-Patient Relationship,” Christian Bioethics, forthcoming.
In addition, an earlier version of chapter 10 was published as
Farr A. Curlin and Christopher O. Tollefsen, “Conscience and the Way of
Medicine,” Perspectives in Biology and Medicine 62, no. 3 (2019): 560–75,
reprinted with permission.
Introduction
A Profession in Crisis
Medical practitioners and those who want to become such practitioners face
basic questions: What is medicine? What is medicine for? What does it
mean to be a good doctor? Their answers seem essential to the practice of
medicine and to understanding its moral norms. The absence of answers to
these questions—or incoherent or incorrect answers—would seem to
prefigure a crisis for both medicine and medical ethics. For without correct
and coherent answers, practitioners of medicine cannot properly orient
themselves within their profession, nor even think of their practice as a
profession at all. And without some account of what the medical profession
professes—without an account of medicine’s purpose or end—ethicists rely
on norms that bear only contingent relationships to the activities of medical
professionals. Ethicists fail, in other words, to articulate an ethics of
medicine in the proper sense.
We believe that medicine, and hence medical ethics, is in precisely this sort
of crisis. Medicine has lost its way because it lacks clarity about where the
way should lead. We no longer have a shared public understanding of what
medicine is for, of what the end of medicine is or should be. Rather,
medicine has substituted for its once clearly recognized purpose something
amorphous, subjective, and shadowy. As a consequence, the norms that
medical professionals and professional ethicists bring to medical practice
are devoid of objective content and radically deficient for guiding doctors
and protecting patients.
THE PROVIDER OF SERVICES MODEL FOR MEDICINE
In answer to the question “What is medicine?,” according to the provider of
services model, medicine comprises a set of technical skills that are to be
put to work to satisfy patient-client preferences. Healthcare workers are
providers of services, and these services are undertaken for the sake of
patient well-being, understood principally in terms of satisfying the
patient’s wishes.¹
Every culture gets the medical practice it deserves, and in our culture
medical practice is dominated by a consumerist understanding, where well-
being is understood in terms of the patient’s desires being satisfied. Efforts
to identify an ethical framework capable of guiding practitioners and
patients in our time have resulted in consequentialism, contractarianism,
and, most prominently, principlism—the framework that gives us the
familiar “four principles” of medical ethics.² In the context of an
individualist and consumerist environment, however, these efforts all tend
to default to three norms: what the law permits, what is technologically
possible, and what the patient wants.
Thus, according to the provider of services model, if an intervention is
permitted by law, is technologically possible, and is autonomously desired
by the patient, medical practitioners should provide the intervention.
Indeed, they may be professionally obligated to do so.³ After all, these
norms fit our expectations of other providers of services. The good folks
who provide us with Wi-Fi or who make our double soy lattes do not bring
further considerations to bear on whether to give us what we want. They do
not consider the appropriateness of our desire for a double soy latte; they do
not ask what websites we’ll be visiting. We expect them to obey ordinary
norms of law and not defraud or deceive, but beyond that we expect them to
do as we wish (provided that they can perform the service, and we can pay).
There is no distinctive professional ethic for these practices because there is
no profession, no deep orientation to a good or set of goods, that gives
meaning and purpose to what they do.
Thus, in the provider of services model, the work of physicians becomes
demoralized, and its ethic becomes what the philosopher H. Tristram
Engelhardt has identified as a “morality of strangers.”⁴ One does not
knowingly do violence to the unconsenting innocent, to be sure. But within
the boundaries of law and consent, what is technically possible is ethically
permissible. That which is permissible and also desired may even be
ethically obligatory. Medical ethics reduces to a set of procedures for
negotiating noninterference with patients’ wishes to the greatest possible
extent. Medicine itself devolves into a powerful set of means to be used to
satisfy the preferences and desires of those who are authorized, legally and
procedurally, to choose.
Among the many consequences of the provider of services model, the
following three loom. First, professional authority has steadily eroded. If
there is no objective standard or end for medicine, physician expertise is
merely technical. Thus, instead of exercising the authority of expertise
within a sphere constituted by their professional commitments, physicians
become increasingly subject to the exercise of power by lobbyists and
political advocacy groups. Medical professionals come to work in a highly
regulated domain in which the exercise of clinical judgment and prudence is
neither possible nor desirable.
It’s no surprise, then, that declining professional authority is followed by a
second consequence: a crisis of medical morale. Insofar as medicine merely
provides desired services, its pretense of moral seriousness is a charade, and
its attempts at professionalism are a façade. The practice of medicine is
characteristically grueling, with long hours spent under taxing
circumstances. Is it surprising that physicians who experience themselves
largely as mere functionaries—asked to set aside traditional medical norms,
religious convictions, and their best judgment—suffer high rates of
burnout?⁵
Finally, when medicine is understood as the provision of healthcare
services, the physician’s judgment—and particularly the physician’s claims
of conscience—come to be seen in competition with the fundamental, but
minimal, norms of the profession. The exercise of physician conscience is
treated as the intrusion of “private” or “personal” concerns into transactions
that should be governed by physicians’ professional commitment to provide
legally permitted services to patients who request those services. Michael
and Tracy Balboni note that this artificial separation of the personal and
professional leads patients and clinicians to suppress and ignore their moral
and spiritual concerns, to the detriments of both.⁶ As a result, the medical
profession and society at large appear increasingly ready to abandon the
idea of the conscientious physician and to use the coercive powers of the
profession and the state to compel physicians to participate in practices that
violate norms that have guided medical practitioners for millennia.
THE WAY OF MEDICINE
What is our alternative vision for medicine? We call it the Way of
Medicine. The Way of Medicine offers physicians both a path out of the
provider of services model (PSM) and the resources necessary to resist the
various political, institutional, and cultural forces that constantly push
practitioners and patients to think of their relationship in terms of an
economic exchange. We attempt in this book to articulate and defend this
Way of Medicine.
Medicine as a Practice
We begin by arguing that medicine is a paradigmatic practice, elevated to a
profession because of its social importance, that aims at human health.
Health is an objective natural norm for any organism: the well-functioning
of that organism as a whole. Human health is also an objective human good:
our organic well-functioning is an aspect of our human flourishing.
Understood in this twofold way, health gives singular purpose to the
practice of medicine.
The PSM also concerns itself with health; no one, to our knowledge, denies
the importance of health to the practice of medicine. But under the PSM,
health is only a subjective and socially constructed concept. Therefore, the
norm of “health” is sufficiently malleable to justify pursuing almost any
desired bodily condition. In addition, many see health, however defined, as
only one among a number of goals toward which medicine might
reasonably be aimed. For the PSM, pursuing health is optional.⁷
In contrast, in the Way of Medicine, the good physician orients her practice
centrally around the good of health. Physicians need only pursue those aims
related to health, and the profession as a whole should, to the extent
possible, avoid entanglement with goods other than health—except when
necessary to understand and address patients’ health-related needs. In
detaching from the objective demands of health in favor of a broader and
more subjective mandate, the medical profession makes a grave mistake of
prudence. Such detachment erodes the grounds for treating medicine as a
profession rather than as a technical trade; the professional commitments of
medicine are watered down, and physicians find themselves lacking the
excellence that is made possible by sustained focus on a single good.
Physicians and other members of the medical profession must also,
according to the practice of medicine, resist inducements to act in ways that
contradict the good of health. This commitment dates back to Hippocrates
and the promise the physician makes in the Hippocratic Oath to “give no
deadly potion” nor “cause an abortion” no matter how much the physician
is implored to do so.⁸ In the Way of Medicine, physicians are always
justified in refusing to intentionally damage or destroy the good of health.
But this is very different from saying that physicians should avoid any
action that even indirectly injures health; the rule of double effect has for
centuries helped clinicians practicing the Way of Medicine to discern when
they can accept as side effects of health-oriented interventions harms that
they should never intend.⁹
The Way of Medicine obviously requires that physicians do more than
refuse to damage the good of health. Physicians must devote themselves to
that good, not in the abstract but as it bears on their patients’ concrete
needs. Medical practice is neither a pastime nor merely a career; it is a
profession, whose members make life-shaping commitments to care for
particular vulnerable persons. The patient necessarily occupies a privileged
position in the physician’s life, as a focal point of his concern and care. At
the same time, the physician who practices the Way of Medicine pursues
the health of his particular patients while mindful that health is not the only
good, nor are his patients the only ones in need.
The Requirements of Practical Reason
The Way of Medicine starts with attention to the kind of practice medicine
is and the good toward which medicine aims, but it does not stop there.
People who pursue the health of patients must do so in ways that respect the
broader demands of ethics. (We use the terms “ethics,” “morality,” and
“practical reason” interchangeably.) Put differently, the practice of medicine
has its own integrity, but that integrity depends on and is accountable to the
requirements of practical reason.
The requirements of practical reason have been known under a number of
names. One is natural law. Natural law is not law inscribed in the heavens
but rather the practical reason that directs persons to act. C. S. Lewis
identified another name, the Tao, as a synonym for practical reason and
natural law, which he describes as the “source of all value judgments.”¹⁰
These various names point to the same reality: practical reason’s
identification of that which is genuinely good for human beings—that is,
conducive to human flourishing—and the corollary implications as to what
we should do and how we should live.
What goods contribute to human flourishing? Practical reason identifies
several goods as giving human persons fundamental and basic reasons for
action: friendship, knowledge, and play are three examples. Human life and
health constitute another such good: we are better off, as individuals and in
community, if we are alive and healthy. Health is not good only in order to
achieve some other purpose; its goodness is what philosophers call basic.
We can reasonably preserve a life for its own sake; we can reasonably
pursue health simply in order to be healthy.
So practical reason gives us the principle that health should be valued and
pursued. What are the implications of that principle for the Way of
Medicine? Here we find that the internal norms of the practice of medicine
are strongly confirmed by what practical reason requires, unlike, say, the
internal norms of the practice of torture. Practical reason forbids us to
intentionally damage or destroy any basic human goods, including the good
of health. Practical reason thus adds to and deepens the norms internal to
medical practice, but it does not contradict those norms. In the Way of
Medicine, a practitioner focuses on the patient’s health but does so while
respecting and being guided by the fuller requirements of practical reason.
AN OPEN INVITATION
In this book we invite the reader to join us on a quest to investigate the Way
of Medicine. While we write primarily for those who are dissatisfied with
the PSM, we welcome any readers with an interest in contemporary
healthcare.
We do not intend to divide the medical profession into two starkly distinct
camps. We recognize that our description of the PSM may seem like a
caricature to some practitioners, who find themselves agreeing fully neither
with the PSM nor with our account of the Way of Medicine. These readers
may call themselves “providers,” but they are devoted to providing quality
healthcare and they take seriously the duty to do no harm to their patients’
health. Yet they also see much value in respecting patients’ choices and
providing healthcare services that align with what the patient believes is
good for him or her.
In fact, the PSM and the Way of Medicine both operate in the practices of
most clinicians—to different extents in different contexts. Few physicians
practice consistently within only one or the other, and the two accounts
coexist amicably so long as what patients want is for their practitioners to
use their best judgment to pursue the patients’ health. Most patients do want
just that most of the time. But ultimately, as we will show, the two accounts
are irreconcilable and the future of medicine will be determined by which
one governs the profession.
What might readers who deeply value what the PSM offers gain from
learning about the Way of Medicine? At a minimum, they will come to
understand what still attracts some of their colleagues to this once regnant,
but now contested, vision of medicine as an honorable profession. Even if
we fail to win over such readers, we can at least contribute to the promotion
of civility and mutual respect among those who disagree.
Still, in this book we speak primarily to those who are disposed to
recognize and affirm that human health is a good that medical practitioners
can know objectively and pursue conscientiously. The book is primarily for
people convinced that some real moral boundaries should never be
traversed—for example, physicians should never kill or deliberately harm
their patients, even when patients request it. These convictions still run deep
in the medical community, but those so convinced inhabit a culture and a
profession that have lost the language (and the arguments) to make sense of
these eminently reasonable propositions. Without such language, it can be
hard for physicians, ethicists, and even patients to find their way. In this
state of affairs, for example, we observe physicians who know that they
should never kill their patients and are deeply unsettled by medical and
societal pressures to the contrary but who have lost the language to talk
about how that commitment to life and health is integral to medicine. With
respect to such physicians and others, our task is to reintroduce a more
fitting vocabulary to make sense of what they already know.
If we succeed, our physician readers will leave this book with tools,
concepts, and arguments that help them practice medicine well while
enabling them to account for what they are up to as physicians. If our
argument is sound, such readers’ practice of medicine will have a coherence
and goodness that others will both admire and want to emulate. Professional
bioethicists and healthcare policymakers will also find resources to address
some of the most contested ethical issues of our day. Finally, those whom
the profession of medicine serves have something to gain, for our book
helps identify what patients can reasonably expect of medicine.
THE PROVIDER OF SERVICES MODEL IN HISTORICAL CONTEXT
A full history of what we call the provider of services model goes beyond
the scope of this book, but Gerald McKenney, in his book To Relieve the
Human Condition, traces the PSM’s roots to the writings of René Descartes
and Francis Bacon. Bacon saw in modern science the means to “relieve and
benefit the condition of man” by reducing suffering and expanding the
realm of human choice, ostensibly noble goals.¹¹ Unfortunately, as
McKenney observes, this imperative to relieve suffering and expand choice
finds in contemporary culture no larger framework of meaning in which to
discern which suffering should be relieved and which choices should be
accommodated. In the resulting moral vacuum, medicine comes to relieve
any condition that an individual experiences as a burden; maximizing
choice becomes the default.
What McKenney calls “the Baconian project” takes the human body to be
without any given purpose or end (telos)—without what Aristotle called a
final cause. Jeffrey Bishop, in The Anticipatory Corpse, traces out how
modern medicine was birthed historically and argues that the loss of a
teleological understanding of the body produced a medicine that treats the
body as so much matter in motion and death as simply the terminus of that
motion.¹² In Bishop’s account, contemporary medicine has come to have no
purpose except that which is given to it, post hoc, through the choices of
those socially empowered to do so—in our era, autonomous individuals. If
an individual chooses to use medicine in a certain way—to manipulate their
body in some way or even to cause their own death—the choosing itself is
taken to make that use of medical technology ethical.
Although McKenney, Bishop, and other critics of contemporary medicine
such as H. T. Englehardt and Stanley Hauerwas all have different points of
emphasis, each finds this turn toward maximizing choice and minimizing
suffering according to the wishes of the patient to impoverish medicine. All
urge, in different ways, the restoration of final causality (purpose) to our
understanding of life, death, and medical practice. All call for medicine to
be situated within an ethical framework in which illness and suffering, and
the practices of medicine, are understood against a vision of humans
flourishing as the mortal, rational animals that they are. The arguments we
make in this book intersect with, diverge from, and are indebted to the work
of these and other critics of contemporary medicine. However, our primary
task is to articulate and defend our own account, and so we do not trace
these intersections, divergences, or debts here at any length.
THE WAY OF MEDICINE AS A TRADITION
We have suggested that what we call the “the Way of Medicine” constitutes
the practice of medicine, deepened, corrected, and shaped by the
requirements of practical reason. Some readers may be suspicious of this
language because they doubt the existence of the Way of Medicine. Such
skepticism is likely to be heightened insofar as our account invokes the
Hippocratic “tradition” of medicine. As Bishop puts the point, “It is indeed
odd to think that there has been real continuity between Hippocrates and the
medicine of today.”¹³
The objection can be extended. Has not medicine always—the skeptic
might ask—encompassed arguments, exceptions, contradictions, and
confusions? When, if ever, has medicine been characterized by sufficient
uniformity—“hegemony,” the dubious might say—to justify speaking of the
Way of Medicine? We take this objection seriously, as uniformity rarely
exists with regard to any human activity. Consider a parallel problem with
designating something as “traditional.” Traditional marriage—for example,
a man and woman joined in a permanent and exclusive union—is found at
least as often in the breach as in the observance.
Nevertheless, just as the phrase “traditional marriage” identifies a core set
of beliefs and practices, adopted by many and constituting a “social
imaginary” that could be found deeply embedded within Western culture,¹⁴
so does the “Way of Medicine” designate a core set of beliefs and practices
adopted by many and constituting a social imaginary within which doctors
and patients have understood much of what has been expected of medicine
and its practitioners.
So while the Way of Medicine (like “Hippocratic Medicine”) has a
somewhat idealized quality to it, it identifies a discernible tradition with
characteristic practices along with ideas that make sense of those practices.
More important, this tradition gives rise to what thinkers such as Edmund
Pellegrino have called the “internal morality of medicine,”¹⁵ whereby the
norms that govern physicians as physicians emerge from the particular
needs to which the practice of medicine responds and the goods toward
which the practice aims. The Way of Medicine identifies the “traditional
practice” that, as McKenney writes, emphasized health as a “standard of
bodily excellence.”¹⁶
Moreover, we do not claim that the internal morality of medicine is self-
vindicating. As the example of torture reveals, practices can be
unreasonable in themselves—intrinsically contrary to human good and
human flourishing. Or, as we observe with respect to medicine, an
otherwise reasonable practice can grow corrupt, unreflective, or shallow. So
one must engage in critical reflection to discern whether, to what extent,
and in what dimensions a practice is in fact reasonable. Such reflection,
however, is simply a form of attending to the requirements of practical
reason, the natural law, or the Tao.
This task, albeit difficult, is incumbent on us all. We need not, however,
attempt the task on our own. Just as the practice of medicine has been
deeply shaped by healers such as Hippocrates, Jesus, Maimonides,
Avicenna, Hildegard von Bingen, Galen, Thomas Percival, and Dame
Cicely Saunders, so have a host of philosophers, theologians, legal scholars,
and clinicians given deep consideration to the requirements of practical
reason in the medical context. The list would begin with Plato, Aristotle,
Augustine, Aquinas, and several of the healers mentioned above, but it
would include, and not end with, twentieth-century thinkers such as
Edmund Pellegrino, Leon Kass, Alasdair MacIntyre, and John Finnis.¹⁷
The Way of Medicine does identify a tradition, not understood as an
unbroken continuity between the past and the present, but in the sense
articulated by MacIntyre, as a “historically extended, socially embodied
argument.”¹⁸ To our own development of that argument we now turn.
CHAPTER ONE
The Way of Medicine
To help us investigate the Way of Medicine and to clarify how it differs
from the provider of services model, we now introduce three patients whose
clinical cases we follow throughout the remainder of the book:
Cindy Parker is a twenty-year-old undergraduate student who presents to
the student health clinic.
Abe Anderson is a fifty-year-old carpenter who makes an appointment to
see a local primary care physician.
Nora Garcia is an eighty-year-old widow with multiple chronic diseases
who presents for her quarterly appointment with her geriatrician.
With these patients in mind, we return to our fundamental questions: What
is medicine, and what is it for? What can Cindy Parker, Abe Anderson, and
Nora Garcia reasonably expect of their physicians? What goods or ends
give purpose to the practice of medicine? What does it mean to call
medicine a “profession,” and how should its nature as a profession structure
the life of the one who enters it? Oddly enough, physicians rarely ask
themselves these questions, nor do medical educators ask them of their
students. But the answers to these questions are central to the Way of
Medicine.
By contrast, the provider of services model (PSM) either ignores these
questions or denies that they can be answered. The PSM denies that
medicine has an end or a purpose that can be known. In the absence of a
rational purpose for medicine, the “morality of strangers” stands in:
physicians must at least gain consent before intervening upon the body of
another. But the morality of strangers declines to take up the question that
the Way of Medicine poses as central: what actions are, and what actions
are not, essential to, acceptable for, or incompatible with the fundamental
purposes of medicine and hence with the profession of the physician?
Principlism, the most prominent ethical framework guiding the PSM,
explicitly circumvents the question of what medicine is for. Tom
Beauchamp and James Childress chose four principles—beneficence,
nonmaleficence, justice, and autonomy—that seemed relevant to the kinds
of practices in which medical practitioners typically engage, yet their
framework neither specifies nor depends on an account of what those
practices are supposed to do. Principlism encourages medical practitioners
to apply the principles, and one principle, beneficence, tells practitioners to
do what benefits their patients. But principlism does not specify what, in
fact, benefits patients and so leaves open what benefits medicine should
seek.
The PSM seems to lack something that should be at the root of medical
practice and ethics. We can hardly ask medical practitioners to make an
open-ended commitment to use the powers at their disposal to achieve
whatever their patients want, much less whatever the state or another third
party demands. In so doing we would ask medical practitioners to divest
themselves of their moral agency and responsibility. To practice good
medicine, one must first understand what kind of practice medicine is, what
it is for, and what difference that makes.
MEDICINE IS A PRACTICE
Medicine, we propose, is a practice. A practice, Alasdair MacIntyre writes,
is “any coherent and complex form of socially established cooperative
human activity through which goods internal to that form of activity are
realized in the course of trying to achieve those standards of excellence
which are appropriate to, and partially definitive of, that form of activity,
with the result that human powers to achieve excellence, and human
conceptions of the ends and goods involved, are systematically extended.”¹
A practice is found wherever human persons cooperate in the pursuit of a
good, grow in excellence at that pursuit over time, and extend their shared
wisdom of the good and excellence in pursuing that good across
generations. So described, medicine seems like a paradigmatic practice.
To identify which goods are realized internal to this practice, consider
MacIntyre’s distinction between internal and external goods. MacIntyre
gives the example of a child learning to play chess. He notes that we might
encourage a child to play chess by offering the child money, and more
money if the child wins. In this way, the child might learn to play chess
with some skill. But that would not mean that chess could be described
adequately as a skilled activity of a particular sort through which one
obtains money. Money is external to chess—it has nothing intrinsically to
do with it. Indeed, insofar as the child plays for money (or other goods
external to chess), the child, MacIntyre notes, will be motivated to cheat—
to contradict “those standards of excellence which are appropriate to, and
partially definitive of” chess. In contrast, insofar as the child comes to
appreciate and pursue the goods internal to chess, the child will both be
motivated to respect those standards and realize the goods found in playing
chess to an extent otherwise impossible.
The same is true for many human practices, including farming, music, and
medicine. Those who practice medicine can do so with a variety of goods in
view, but many of these goods—for example, money and social prestige—
have nothing intrinsically to do with the practice. One can readily imagine a
physician practicing medicine without pay and in a context in which she
gains no social prestige. Moreover, insofar as a physician practices
medicine for money or prestige, the physician is motivated to ignore
medicine’s “standards of excellence” if by doing so he gains more of these
external benefits. We see this whenever a physician recommends medical
interventions because those interventions increase the physician’s income.
In contrast, insofar as a physician comes to appreciate and pursue the goods
internal to medicine, the physician will respect the standards, rules, and
norms that make medicine possible, and he will also join other practitioners
in developing and extending the practice to realize its internal goods to an
ever greater depth. In this way, the practice of medicine has been
dramatically developed and extended over time.
The distinction between internal and external goods helps to explain why so
many physicians and nurses today are dissatisfied with their work.² A
physician who practices medicine merely as a job does so for its external,
extrinsic benefits. If he can obtain such benefits in a different, less
burdensome way, he will. In contrast, the physician who practices medicine
as a calling works for the benefits or goods that are realized in the work
itself—its internal or intrinsic rewards. We suggest that physicians today are
burning out and becoming alienated from their work in substantial part
because they do not experience their activity as sufficiently aligned with
and successful in bringing about the goods internal to medicine.
Several features of medicine follow from the fact that it involves active
pursuit of genuine human goods in a cooperative manner through time. For
example, medicine requires extensive effort and sustained focus from its
practitioners. As a parallel, consider the good realized in professional
soccer (football, for our non-American readers). To have any prospect of
playing professional soccer, players must train and discipline themselves for
many years. Similarly, to have any prospect of becoming an excellent
physician, medical trainees must study, train, and discipline themselves for
many years. Professional soccer players and physicians both pursue the
goods instantiated in their practices with such all-in commitment that they
must inevitably forgo other opportunities for human goods. This is not
because they believe soccer or medicine is the only activity worth pursuing
but because pursuing soccer or medicine is central to their particular
vocations.
In soccer and medicine alike, sustained effort and commitment make
possible constellations and expressions of the goods that would otherwise
remain out of reach—those available to a master but not to a dilettante (and
those available to a tradition, but not to a here-todaybut-gone-tomorrow
pastime). Most of us can enjoy the delights of recreational soccer with a
few cooperating friends, a patch of lawn, a ball, and a small window of
time. Little commitment is required. But the beautiful game of professional
soccer is achieved only because numerous people make extensive
commitments in cooperation with one another. Similarly, most of us can
bandage a minor wound or nurse a cold, but the commitments of those who
cooperate to bring about the practice of medicine make possible entirely
different levels of healing. No one who is sick wants a physician who plays
at medicine in the way that a physician might play at soccer with his
children.
Medicine requires commitments to particular goods, and also to particular
persons. Medicine requires, first, commitments to that community of
persons whose cooperation makes this social practice possible. The
comparison with professional soccer may help again: players, coaches,
trainers, owners, managers, referees, and fans all cooperate to bring about
professional soccer. They form a community constituted around a shared
good and a shared will or commitment toward that good. The members of
this community cooperate to mobilize diverse resources and to create
structures and institutions that facilitate their further cooperation—FIFA
(Fédération Internationale de Football Association), the World Cup, and so
on—so that the particular instances of goods brought about by professional
soccer might be realized.
Similarly, medicine requires a great deal of cooperation among physicians,
nurses, pharmacists, other healthcare practitioners, administrators,
educators, and of course, patients. Together they form a community
constituted around the goods that medicine seeks and a shared commitment
to pursue those goods together. The members of the community of medicine
cooperate to mobilize resources and to create structures and institutions that
facilitate their further cooperation—through hospitals, clinics, operating
rooms, professional schools, and so forth—so that the particular goods
brought about by medicine might be realized. Even a minor surgery, to
succeed, requires major commitments and cooperation.
Of course, anyone familiar with the institutions of soccer such as FIFA also
knows that those institutions can become corrupt, focused on the external
rather than the internal goods of the game. When that happens, the
institutions become not aids but threats to the practice.
Similarly, the institutions of medicine, from medical schools and hospitals
to insurance companies and regulatory bodies, can become obstacles to the
practice of medicine and its internal goods. Many of the pressures pushing
clinicians to embrace the PSM come from these institutions, which threaten
to withhold external goods and even to inflict institutional sanctions against
those practitioners who, for example, refuse to cooperate in interventions
that they believe contradict the purposes of medicine. We investigate the
Way of Medicine not least because doing so is an essential first step toward
revitalizing medicine’s institutional world.
Within the community of persons whose cooperation makes medicine
possible, patients occupy the place of honor, and the most fundamental
commitment of practitioners as practitioners is to their particular patients.
Although the term “profession” is now used widely to refer to any
specialized practice requiring study and training, classically the term
referred to medicine, the law, and the clergy. Each of these practices
responds to a profound human vulnerability, and each entails a singular
commitment to and solidarity with those who experience that vulnerability.
In the case of the clergy, the vulnerability is that of being estranged or
separated from God and the community of the faithful. In the case of the
law, the vulnerability is that of being exposed to threats posed by
adversaries and the power of the state. And in the case of medicine, the
vulnerability is that of being at risk for disease, injury, and death.
In the grip of such vulnerabilities, people need trustworthy advocates to
whom they can turn for help. These advocates must be trustworthy, first,
because the stakes are high. If a soccer player makes a mistake, his team
may lose the game. But if an attorney makes a mistake, his client may
spend years behind bars. And if a doctor makes a mistake, her patient may
die. Because the stakes are high, those who aspire to the clergy, the law, or
medicine typically must undergo long periods of training and
apprenticeship before they are authorized as practitioners of their
profession.
These advocates must be trustworthy, too, because in order to receive their
help, the one in need must entrust himself to the advocate’s care, and doing
so makes the one in need profoundly vulnerable to the professional herself.
The supplicant must entrust herself to the priest by confessing truthfully and
submitting to the priest’s ministrations. She makes herself vulnerable to the
possibility that the priest will divulge what she confesses or use her
information for personal gain. The accused must entrust himself to the
attorney by permitting her to represent him before the power of the state.
He makes himself vulnerable to the possibility that the attorney will collude
with the prosecutor to settle the case in a way that minimizes the attorney’s
work while miscarrying justice. The patient must entrust himself to the
physician by submitting to interventions with substantial side effects and
risks. He makes himself vulnerable to the possibility that the physician will
recommend the intervention that fattens the physician’s wallet rather than
the one most likely to bring healing to the patient. In all of these cases, the
one in need stands in an acute relationship of vulnerability with respect to
the professional.
Because of this vulnerability, those who practice one of these three
professions must internalize and reliably display the moral commitments
that govern that profession. These commitments become, in MacIntyre’s
terms, rules and standards of excellence without which the practice cannot
long continue. The word “profession” initially referred to taking religious
vows or otherwise publicly declaring particular beliefs or commitments. At
the heart of the professions of the clergy, the law, and medicine is a
commitment to the good of the vulnerable. In medicine, this entails a
particular kind of solidarity with one’s patients—a commitment to them that
prescinds from all judgments about a patient’s merit and engenders
distinctive and substantial obligations toward the patient.
To the question of what kind of activity medicine is, we can now say that it
is a paradigmatic practice—and to the question of what kind of practice it
is, we can say that medicine is a paradigmatic profession. Medicine arises
not from a need to bring about the greatest good for the greatest number nor
in order to satisfy an array of desires, but rather in response to the threats
that disease, injury, and death pose to the flourishing of every human being.
Medicine’s practitioners devote sustained effort and commitment to
preserve and restore those goods that are threatened. They do so in
cooperation with and commitment to a community of others who also are
concerned to preserve and restore these goods and in solidarity with those
individuals who need the goods that medicine exists to seek, preserve, and
restore.
This gives us a starting place on the Way of Medicine, but we need more.
To know what Cindy Parker, Abe Anderson, and Nora Garcia can
reasonably expect from their physicians, we still need to know which goods
medicine is for.
MEDICINE IS FOR HEALTH
Accordingly, we now make a modest proposal: medicine is for health. That
health is a human good we consider evident; health gives all human beings
a reason for action because it offers all human beings something that
contributes to their flourishing. So health is an end for everyone in their
day-to-day life, a point to which we return in chapter 2.
We acknowledge disagreements regarding both what health is and whether
health is the end of medicine, and we will address these disagreements
below. Nevertheless, we take the claim that medicine is for health to be
modest because it is so strongly supported by the evidence of authority, is
so implicitly affirmed by the practices and commitments of physicians and
patients across moral communities, and so aptly addresses the vulnerability
that patients experience, thereby undergirding the solidarity and trust that
make medicine possible. Let us address each of these points in turn; in so
doing, we identify and describe the Way of Medicine.
First, that health is the end of medicine is a proposal supported by the
evidence of authority—the considered opinions of wise practitioners of the
art for thousands of years. Though not himself a physician, Aristotle
thought it axiomatic that medicine is for health. He wrote, “Now, as there
are many actions, arts, and sciences, their ends also are many; the end of the
medical art is health, that of shipbuilding a vessel, that of strategy victory,
that of economics wealth.”³ Aristotle took these claims as starting points for
practical reason, as things known immediately by both “the many and the
wise.” Similarly, the Hippocratic Oath includes a promise to enter homes
only “on behalf of the sick,” implying that medicine’s fundamental aim is to
restore the health that is imperiled in the sick. Countless practitioners of
medicine, before and after, have made the patients’ health their goal.
Second, the proposal is implicitly affirmed by the practices and
commitments of physicians and patients across diverse moral communities,
including those who might deny that medicine has any intrinsic purpose.
Indeed, implicit agreement that medicine is (at least) for health seems to be
a necessary condition for the practice’s existence. One could not mobilize
the massive social cooperation necessary to sustain a coherent medical
profession in the absence of some shared end. Today, medical technologies
can be applied toward many different goals—something we consider in
more detail throughout the book. For the moment, we note that with respect
to many of these goals (e.g., family planning or a timely death), different
religious and other moral traditions have long disagreed. If medicine were
understood as a practice of pursuing such goals, there would be no shared
medical profession any more than there is a shared clergy profession.
Different moral communities simply would not cooperate to bring such a
profession about.
Virtually everyone agrees, however, that it is good to care for the sick so as
to preserve and restore their health. That commitment is central to Judaism,
Christianity, Islam, and other world religions, and it is championed equally
by those who do not consider themselves religious at all. That commitment
resonates with and makes sense of students’ longing to be physicians and of
physicians’ longing to become more fully the physicians they are not yet.
Indeed, though physicians, patients, and bioethicists disagree about many
things, we have yet to meet colleagues who challenge the notion that one of
physicians’ central concerns is their patients’ health.
Third, the proposal responds aptly to the particular vulnerability that
patients face and evokes the specific form of solidarity and commitment
that makes medicine the profession it is. Put another way, medicine as
oriented toward patients’ health addresses a real and significant need of
human persons. Edmund Pellegrino and David Thomasma, among others,
have argued that the particular form of vulnerability that sickness brings
gives us clear direction regarding the internal morality of medicine,⁴ or
what we are calling the Way of Medicine. If we pay attention to the
experiences of those who are sick, we find that they need a skilled helper
habituated by a resolute commitment to their good insofar as that good
involves health. The commitment to seek their patients’ health, and to do so
in solidarity with the patient as a person, allows those who are sick to
entrust themselves to their physicians. Without such trust, physicians cannot
do their work. The ethic of medicine—the Way of Medicine—is grounded
in these truths.
“WHY ONLY HEALTH?”
Health may be good, and there may be good reasons to make health a
primary focus of medicine, but why only health? Why not also direct
medicine toward any number of other goals, to bring about other states that
otherwise reasonable people also desire? It may seem nothing more than
incantation to say that medicine by its nature aims at health. Surely
medicine, a social construct, has no nature in any deep sense.
We concede a limited point: there is nothing magical about medicine as a
social practice that gives it a lock on the good of health and only that good.
The particular way in which goods are realized in a practice depends on the
structure and history of that practice. Had medicine been organized and
pursued in a different fashion, had its history and traditions been different, it
might have become a different practice with a different internal good.
However, a certain practice did develop whose primary, and even singular,
internal good was health. The question now is this: is there a reason to
maintain that traditional practice, the practice identified by the Way of
Medicine?
We think the answer is Yes but make a further concession: our argument is,
in certain respects, a prudential one. We could imagine, in theory, a
profession in which physicians aimed at all kinds of goods while also
maintaining excellence in preserving and restoring health, and did so while
respecting the further requirements of practical reason. We have not,
however, seen such a profession realized in fact. Indeed, bringing one about
seems prohibitively difficult.
The first problem is one we have already described: without a clear focus
on a common recognized good, it is not possible to engender the social
commitments and cooperation necessary for an appropriately capacious
practice of medicine. Suppose that doctors were thought to be merely
powerful wielders of technology, serving the desires of the highest bidder or
the demands of the most powerful institution. What reason could we have
for trusting such doctors? Indeed, would it not be more reasonable for those
who are sick to hold back from entrusting themselves to such “physicians”?
Without trust spread broadly across a variety of moral communities, a
public profession of medicine will steadily disintegrate into rival camps that
use the powers at their disposal to pursue different and ultimately
irreconcilable goals.
That is not to say that the Way of Medicine is monolithic; it allows for
diverse practices as long as those practices share the pursuit of health. The
good of health allows for complexities and ambiguities, and different moral
communities will disagree about how and how much to pursue health
relative to other goods. They may even disagree on the margins about what
health is. A focus on their patients’ health, however, allows clinicians and
patients even from diverse moral communities to trust one another in
pursuing this limited but crucially important shared goal.
Another problem is that of focus and differentiation. Consider again a
professional soccer player. If he begins to use his remarkable foot dexterity
to kick field goals in US football, and then to dance rumba, and then to
compete in mixed martial arts, at some point he becomes not a professional
soccer player but a highly skilled user of his feet. As the scope of his
footwork expands, the excellence of his soccer playing will likely diminish,
and some uses of foot dexterity may come to contradict his commitment to
soccer. (For example, kicking another player would conflict with the
internal norms of soccer, and kickboxing might result in injuries that cripple
his soccer play.) As a result, professional soccer players generally focus on
soccer, not on making things happen with their feet. Similarly, insofar as
physicians use the technological powers at their disposal to pursue a wide
array of outcomes, they necessarily become less expert and skilled at
pursuing their patients’ health.
Moreover, as we further consider throughout the book, some uses of
medical technology not only distract practitioners from their pursuit of their
patients’ health but come to contradict that pursuit or otherwise violate the
requirements of practical reason. Some alleged healthcare services directly
destroy health or other basic human goods. Some satisfy wishes for that
which is not good. Some undermine the conditions necessary for patients to
entrust themselves to clinicians when they are sick. Some services are
simply unfair. By detaching from medicine’s orientation to health, the PSM
sets aside the internal resources practitioners need in order to resist
temptations to abuse their medical powers.
History is punctuated with episodes in which medical powers were abused.
Tellingly, in each case the commitment to the patient’s health was either set
aside or directly transgressed. Many readers are familiar with the Tuskegee
experiments, in which physicians tracked African American men suffering
from syphilis for years without treating them. In that case, doctors set aside
concern for the health of their patients in order to use the patients to pursue
scientific knowledge. We could similarly consider the medicine of National
Socialist Germany, which was in its time the most scientifically
accomplished medical system in the world. There, by trading the health of
the patient for the “health” of the “Volk” (the nation), German medicine
became the instrument of mass torture and murder.⁵ Or again, we could
look at the eugenics movement in the United States, in which physicians
forcibly sterilized thousands of women to realize a dubious vision of
“population health.”⁶ Wherever medicine as a social institution has gone
badly wrong, it has ignored or abandoned its commitment to the patient’s
health in order to harness medicine’s powers to achieve other social goals.
Keeping the health of the patient as the end of medicine shores up a wall of
defense against such abuses.
WHAT IS HEALTH?
Even if you agree that medicine has a purpose and that the purpose is
health, it remains necessary to define “health” further, which poses
difficulties. Health is a reality of such breadth and depth that it cannot be
known with the same precision as mathematical algorithms. Any definition
of health will necessarily be incomplete and will allow, at least on the
margins, for uncertainty and ambiguity. For some, perhaps particularly for
those conditioned to regard scientific knowledge as the highest form of
understanding, that health cannot be defined with precision will be deeply
unsatisfying. If health cannot be defined with clear margins, of what use is
the concept in specifying the purposes of medicine?
We can still know much about health, because it and its absence are
intrinsic to human experience, as they are also to the lives of nonhuman
animals. Indeed, the fact that diverse and plural cultures all give rise to
healing professions testifies to the way health and the absence of health
make themselves known as facts of human experience and are accessible to
the inquiry of reasonable people. However, in light of the kind of reality
health is, we do well to heed Aristotle’s admonition that we not demand of a
subject matter more certainty than it allows.⁷ In that spirit, we start with
what seems obvious regarding health, and we draw distinctions where
necessary for clarity.
In this task we are deeply indebted to the work of Leon Kass. In the
following paragraphs, we articulate and extend certain aspects of Kass’s
inquiry into the nature of health.⁸ Throughout the rest of the book, we
consider further what health is by examining health in particular clinical
contexts, and we show that the way one defines health dramatically shapes
the way one understands physicians’ responsibilities.
The Way of Medicine makes two claims about health and objectivity. First,
health is an objective bodily norm for all living organisms. “Norm” here
does not mean a moral norm; rather, living beings have characteristic bodily
activities and tendencies, and these activities and tendencies determine what
is appropriate—the norm—for them in regard to the well-working of their
organic bodies. Hence, there are objective facts about what health is for any
organism, and being right or wrong is possible with respect to questions
about an organism’s health. When organisms display the health-related
norm(s) for members of their kind, we can say that they are healthy.
Second, human health is an objective human good; health is grasped by
human agents as worth pursuing. Likewise, such agents grasp that not
valuing health would be unreasonable and that states of ill health are to be
avoided. Health as a bodily norm and health as good are related, of course:
health could not be objectively good if there were no facts about what
health is. But the two forms of objectivity differ: the health of nonhuman
organisms is, like human health, an objective bodily norm for those
organisms, yet it is not a human good.
The Way of Medicine takes human health to be objective in both senses:
knowable in fact and genuinely good. Denial of either claim leads directly
to the PSM, for if health either is not real or is not good, patients have no
intrinsic reason to choose health rather than other desired states; nor do
physicians have any intrinsic reason to make health central to their practice
and profession.
Our claim here should not be misunderstood by reference to a particular
dispute that characterizes the current philosophy of medicine. Philosophers
disagree about whether health is an objective or an evaluative concept;
philosophers advocating the former are attracted to naturalistic accounts of
health, often based on the notion of statistically normal function.⁹ Those
who advocate for the latter hold that what we value determines what we
consider to be healthy.¹⁰
Our view differs from both accounts. Against the former, we hold that
living beings are genuinely teleologically ordered. As we will discuss
below, organisms have characteristic activities that serve their biological
life form, and that life form establishes the objective norm for the
organisms’ healthy functioning, not mere statistical regularities. Against the
evaluative view of health, we distinguish between health’s being an
objective bodily norm and health’s being objectively desirable or valuable.
Whether an organism is healthy does not depend on whether health is
desired or valued. Hence, one can recognize a squirrel’s health, as we do
below, without incorporating any judgment that the squirrel’s health should
be pursued or protected.
What, then, does it mean to say that a living being is healthy? What is the
health that the medical profession serves? Here we make four points about
what health is, then clarify in certain respects what health is not.
First, the domain of health, in its primary meaning, is not that of parts but of
wholes. When people speak analogically of healthy marriages or healthy
communities, they are concerned with those realities as wholes, and the
same is true of health in its paradigmatic sense. Health is a matter of what is
true of an organism, the living biological whole that in fact precedes,
metaphysically and temporally, the healthy differentiation, growth, and
development of its parts.
The term “health” can obviously also be applied to parts of the organism, as
to a “healthy liver” or a “healthy heart.” But such descriptions are still
clearly dependent on our understanding of the health of the whole. A liver
or heart is recognized as healthy when it is in a state that serves the health
of the whole organism. Likewise, the health of the whole organism is more
than the sum of the health of its parts. An organism may have all its parts in
apparent working order and yet be in ill health. We see this in patients with
syndromes of medically unexplained symptoms.¹¹ Or an organism may have
a deficient or absent part and still be in good health, as we see in many
patients who have lost a kidney or spleen, even a limb or an eye. Finally, we
know from experience that physicians readily sacrifice a part for the health
of the whole, as they do when removing a crushed finger or an infected
gallbladder. All these truths testify to the primacy of the organism as a
whole in thinking about health.
Second, health is associated importantly with activity. Kass describes health
aptly as the “well-working” of the organism as a whole. This emphasis on
activity militates against the forms of reductionism that equate health with
static conditions and abstractions, such as lab values in the expected range,
clear radiographic studies, and unremarkable physical exams. In being
characterized by activity, health resembles courage or strength, which
would not exist unless manifest in action—and it is unlike beauty or stature.
Activity does not imply constant movement, of course; thinking, resting,
and sleeping are all activities that require and display health. For humans,
each is an essential aspect of the well-working of the whole.
Third, the health of an organism and its health activity must be judged, to a
certain extent, with sensitivity to the organism’s context and state of
development. The health of a thirty-year-old woman differs from the health
of a thirty-year-old man, and the health of both differs from the health of a
ten-year-old of either sex. A healthy ninety-year-old experiences extensive
diminishments of health relative to a typical twenty-year-old, yet we can
still distinguish between a healthy and an unhealthy ninety-year-old.
Similarly, what it means for a person who has a conspicuous disability to be
healthy differs from the perception of health of a person who does not.¹²
These differences, present within the population of a species, are more
pronounced between species. Hence, our fourth point is that health is
species-specific. The health of a dolphin differs markedly from that of a
squirrel. The health of both is manifest in the activities they perform as the
sorts of organisms they are. Being different kinds of organisms, with
different natures, their health is different, but in each case we can still speak
of the well-working of the organism as a whole. Thus, no one would
suspect a squirrel to be in ill health simply because it cannot swim at high
speeds under water. And no one would suspect that a dolphin is ill because
it cannot climb trees. The signs, expressions, and realizations of health vary
from species to species. Human health is more complex because the
characteristic activities of healthy human beings are more varied and
diverse than those of other organisms. This complexity makes it difficult in
some cases to make judgments about health and how to pursue it, as
subsequent chapters show.
Do all of these complexities indicate that health is merely a subjective
notion, merely a socially constructed concept? They do not. Something can
be relative in certain respects while still being objective. Health is objective
if there are matters of fact concerning whether some individual organism is
healthy, but to discern such matters of fact, one must recognize truths that
are relative to that organism’s species, stage of life, and particular
circumstances. Indeed, health can be subjective in certain respects while
still being objective: a clinician may be unable to find anything objectively
wrong, but we believe (with Kass) that if the individual sincerely believes
she is unhealthy, then to that extent she is. More investigation may be called
for in order to determine, if possible, what has gone wrong, but individuals
do have a certain epistemic authority in determining whether they are
unhealthy.
Health can easily be confused with proximate or related concepts. Health is
not the same, for example, as having the least possible risk of future injury,
illness, or death. Playing soccer professionally requires a high degree of
health but also risks injuries that could be avoided by refusing to play
soccer. It does not follow that standing on the sidelines displays greater
health than does playing in the game. Similarly, health makes pregnancy
possible, while pregnancy also poses risks to health. One who is sterile does
not display greater health, however, than one who is capable of pregnancy.
Nor is health the absence of suffering. It is true that physicians have always
prioritized relief of suffering. “To cure sometimes, to relieve often, to
comfort always,” the maxim goes. Poor health is, of course, suffered, and
many conditions that diminish health also induce pain and other symptoms
that elicit suffering. Yet we also could draw up a long list of conditions
people suffer that may affect their health but are not themselves signs of the
absence of health. Those who are poor suffer want of finances, and those
who lose loved ones suffer heartbreak, to give just two examples.
Distinguishing suffering from health has decisive implications for medical
ethics, as we note throughout the book. To foreshadow a bit, we observe
that some people today, insofar as their experience goes, suffer the
conditions of having male genitals, small breasts, or short height, or even
being alive. If physicians equate health with the absence of suffering, they
will try to relieve these and other conditions. This hubristic aspiration leads
physicians, in the words of McKenny, “to relieve the human condition.”¹³
The distinction between suffering and ill health raises an important
question: what about mental health?¹⁴ The challenge is to define “mental
health” so that it includes the well-working of an organism’s mental and
psychological capacities, but it does not expand to require the absence of
suffering we just described, nor happiness, nor the satisfaction of every
desire. On one end of a spectrum are conditions that seem clearly to
represent deficits in mental health: schizophrenia or catatonic depression, to
give two examples. On the other end of this spectrum we find sadness,
anxiety, grief, or rambunctiousness that are often described as mental and
behavioral illnesses but do not clearly display a deficiency of one’s health.
Often it is not possible to draw a bright line between conditions that display
ill health and those that do not. Making these distinctions requires both
good clinical judgment and the humility to recognize the limits of such
judgment. What medicine should pursue is the mental capacity that makes it
possible to experience happiness, sadness, and other emotions in the way
that humans experience them when they are well-working, and to make
choices and behave in ways that humans are capable of when they are well-
working. Medicine oriented to health will not seek to bring about a
particular emotional state or a particular set of choices and behaviors as
such. By analogy, medicine would seek to preserve or restore the capacity
that makes it possible to play a musical instrument, not to determine which
notes are played or to ensure that the music remains in a major key.
Finally, although we have noted that the state of health is also objectively
desirable, and hence an aspect of human flourishing, the state of being
healthy does not encompass all that goes into human flourishing. The World
Health Organization errs when it defines health as “a state of complete
physical, mental, and social well-being.”¹⁵ A related error is made by the
agrarian poet and social critic Wendell Berry, whose work emphasizes that
human beings flourish only in community. Berry defines health as
membership and argues that the smallest unit of health should be the
community; thus, “to speak of the health of an isolated individual is a
contradiction in terms.”¹⁶ Such accounts, though admirable as critiques of
reductionism and individualism, problematically raise health above other
human goods, making health not merely one human good but the state of
human flourishing that encapsulates all human goods. If the end of
medicine is health so understood—if medicine’s purpose is to bring about
the fullness of life, the Hebrew concept of “shalom,”¹⁷ the World Health
Organization’s vision of complete well-being, or even Berry’s vision of
membership—it seems that physicians have a wide-open mandate. All is
their responsibility, all their domain.
Health so understood is not useful for guiding medical practice. Imagine a
man who says that he is going to see his physician because he recognizes
that he has an unhealthy relationship with his neighbor or he wants to work
on getting his finances into better shape. When terms for health are
expanded to encompass all aspects of human well-being, the term may
inspire but it no longer proves useful, especially not for naming the thing
that medicine is for.
According to the Way of Medicine, health is the end or purpose of
medicine, the principal goal that medicine seeks, the principal good that is
realized internal to medicine’s practice. But “health” here is meant in a
limited, circumscribed, and embodied sense: what Kass describes as “the
well-working of the organism as a whole,” realized and manifested in the
characteristic activities of the living body in accordance with its species-
specific life-form.¹⁸ We believe this account captures the primary meaning
of health. Health so understood is also a good that can be pursued for its
own sake as one—but only one—constitutive aspect of human flourishing.
It is additionally, of course, a condition for the possibility of pursuing other
human goods. According to the Way of Medicine, human health understood
in these two dimensions—as an objective bodily norm and as an objective
human good—grounds medical practice and the medical profession: it is the
end that takes precedence over others in the practice of medicine, one that is
not to be abandoned or violated by those who profess a vocational
commitment to it.
Their health, therefore, is what Cindy, Abe, and Nora can reasonably expect
will form the center of their relationships with all healthcare professionals
through all stages of their lives.
CHAPTER TWO
The Requirements of Practical Reason
Having argued that medicine is for a patient’s health, we now consider how
medicine’s pursuit of the patient’s health depends on and is accountable to
ethics: the broader requirements of practical reason. The questions that
concern us throughout this book are practical. They concern action—not
action considered impersonally from a spectator’s point of view but action
considered personally from the standpoint of one who must decide what to
do. Practical reason considers questions about particular actions as well as
lives as a whole. Humans rightly ask not only “What should I do?” but also
“How should I live?” And “What kind of person should I be?”
Members of the medical profession clearly need to ask both kinds of
practical questions. With respect to particular actions, the questions include
the following:
•Should I inform this patient of the terminal condition she has, even though
it might seem to do no good and might even distress her and cause her
suffering?
•Is it permissible to counsel or provide contraceptives or abortion to those
who seek to avoid or end unwanted pregnancies?
•Must I respect this patient’s wishes that I not provide further nutrition or
hydration, that I provide sedation to the point of unconsciousness to
alleviate her anxiety, or . . . ?
The medical professional’s life is filled with such questions, and the
medical practitioner needs an adequate framework for thinking about how
best to answer them.
With respect to questions about lives as a whole, the questions include
these:
•What sort of doctor [or nurse or therapist] should I be?
•What are the fundamental commitments of my profession around which I
must orient my life?
•What sorts of virtues must I have, and how must I discipline my mind,
will, and emotions in order to become and remain a good practitioner of
medicine?
•How does being a health-care practitioner fit into my other life-shaping
commitments, including my commitments to family, to neighbor, and to
God? Are these parts of my life walled off from one another? If not, which
should take priority, and how should conflicts be negotiated when they
arise?
These questions involve how a person should live, and they cannot be
answered solely by thinking about the practice of medicine and its internal
good, for they concern the relationship of that practice and its good to the
other practices, goods, and values in a person’s life.
The practice of thinking critically about all of these questions and
subjecting the possible answers to reflection and scrutiny is that part of
philosophy that can be called ethics, or practical ethics. Aristotle kept the
practical nature of ethics squarely in focus when he composed his
Nicomachean Ethics.¹ Engaging in ethics, he wrote, is for the sake of taking
action. Some philosophers focus primarily on theoretical questions
regarding ethics—for example, questions about the meaning of moral
language—but in this book we approach ethics practically, as Aristotle did.
Our understanding of practical ethics is deeply shaped by the tradition of
natural law ethics. There are many distortions and abuses of natural law
reasoning, particularly those that have defended an unjust arrangement of
institutional and social power as “natural” or as expressing the “law of
nature.” These are not what we mean by a natural law ethics. Rather, a
natural law ethics is an attempt to discover the deepest practical principles
of human flourishing and to work out the implications of those principles in
norms for concrete action. These principles and norms are what we identify
as the requirements of practical reason—that which practical reason
prescribes when functioning properly. We will argue that this natural law
approach to ethics is superior to consequentialist, deontological, and
principlist approaches with respect to both moral decision-making in
general and medical decision-making in particular.
HUMAN ACTION AND HUMAN GOODS
Let us start with questions about action: Why do we ever act at all? Why
not simply be, resting in our own personal existence without strain or
effort? Surely part of the answer is that human beings in many important
respects exist as beings who are “not yet fully formed,” who can and must
shape themselves by choice and action in order to become more fully what
they are capable of being.
No one comes into existence already married, for example, and no one
comes into existence already a doctor. Even upon reaching these states, no
one is “all done” being either married or a doctor. Rather, being married or
being a doctor requires choices and actions that build up our existence as
married persons or doctors, fulfilling potentials that we had. But potentials
for what? To what does reason direct us? Practical reason’s most
fundamental principles direct us toward human flourishing.
What does “flourishing” mean? Sometimes people talk about “happiness”
or “joy” as synonyms for flourishing, but these words can mislead:
happiness can be taken as a state of simply feeling good, and joy can be
thought of as experienced only momentarily (even if frequently). In
contrast, by “flourishing” we mean a state of being truly well off as human
beings, and sometimes what feels good does not makes us truly well off.
Moreover, being well off as a human being is something that characterizes a
life over time, not just isolated moments. So neither “happiness” nor “joy”
captures fully the notion of flourishing, though happiness and joy
accompany flourishing in some measure.
Nor is flourishing a self-centered notion, as happiness sometimes is. Human
beings are well off and flourish only in community, in relationships with
one another, as Wendell Berry reminds us. This point is central in
considering the doctor-patient relationship and the importance of patients’
relationships to their families. In this way and others, the conception of
flourishing we advance differs significantly from what some thinkers have
called the self-expressive individualist model of happiness. At its worst, the
latter model urges, “If it feels good, do it,” reducing human action to
expressions of undisciplined self-interest.
In contrast, practical reason begins with human goods. Human action is
always oriented toward something perceived as beneficial or good, even
when that perception is mistaken. We act for the sake of bringing about
something that promises us or others like us some benefit, and this is where
we find the foundations of all practical thought: in basic goods that are
intrinsic aspects of human well-being or flourishing.
By using “basic” and “intrinsic,” we are distinguishing the goods at the
foundations of ethics from others that are only instrumental and derivative.
Consider the goods of money and medicine. These goods are good only
insofar as they promise to bring about something else that is desired. But
practical reason starts with those goods that are desirable in themselves for
their own sake, because they themselves make all human beings better off
and contribute to their flourishing. Basic goods include life and health,²
knowledge, aesthetic experience, friendship, integrity, religion, and
marriage.³ Each of these particular goods benefits people in unique and
irreducible ways. The way we flourish as human beings in attaining
knowledge differs from the way we flourish in attaining health. Human
flourishing is not reducible to one of these goods, and so, as we will see, a
life characterized by flourishing requires some ordering principle within it.
Even bad decisions and lives guided by evil are typically directed at real
and basic human goods. Consider again the Tuskegee scandal. This
decades-long experiment was a terrible failure of medical morality, yet it
was driven by interest in two goods we consider basic: knowledge and
health. This presents an essential concern of ethics: how do we get from
awareness of the basic goods of human action to making moral decisions in
pursuing those goods?
CONSEQUENTIALISM
One answer that many philosophers have defended is that we should
maximize goods when making moral decisions.⁴ In maximizing, one
accounts for all the beings who will be affected by an action, and, as Jeremy
Bentham asserted, one promotes the greatest good for the greatest number.
Bentham was the founder of the view called utilitarianism; utilitarians
thought that the good to be maximized was pleasure. Other utilitarian
thinkers take different views of what is to be maximized, but we refer to all
views of this sort as consequentialist, for they all take the goodness or
badness of consequences as the primary consideration in making moral
judgments.
We have argued elsewhere, at greater length, against consequentialism, and
so a few remarks will suffice here.⁵ First, consequentialism has at least
surface problems with the concepts of justice and rights. Justice and rights
seem to be “trumps” against attempts to maximize goodness when that
maximization would be unfair to some or would violate basic human rights
—for example, threatening persons with enslavement or torture. Second,
consequentialism presents significant problems in its demand that we
consider all of the consequences that follow from our actions. Our
knowledge of such consequences is limited, and that which would fail to
maximize consequences in the short term might bear unforeseen but
beneficial fruits over time.
The third and most important point to make about consequentialism, and
specifically about maximization, is that it cannot work even if consequences
could be foreseen reliably, because instances of the goods that are
fundamental aspects of human well-being and flourishing cannot
themselves be weighed against one another rationally. For example, what
do person A’s long-term health and person B’s longterm knowledge have in
common that would provide a metric by which we could say that there is
greater goodness in A’s health or B’s knowledge? Health and knowledge are
different goods, and these persons are different persons. The options at
stake in a decision to, for example, pursue an experiment at the cost of A’s
health or desist at the cost of B’s knowledge seem incommensurable—they
do not have a common measure of goodness between them that would make
maximization possible. Nor are the values of persons’ lives
commensurable: each person’s life is uniquely and immeasurably valuable.
We cannot say without qualification, therefore, that this one person should
be sacrificed in order to save those two, three, or twelve.
Indeed, even options that a single good generates do not seem genuinely
commensurable. Medical professionals and patients regularly face options
in which different health benefits are offered, usually accompanied by
differing health burdens. A proposed course of surgery plus radiation
treatment might offer a patient hope of a longer life, albeit with
considerable side effects such as nausea, pain, and reduced energy. A
proposed watchful waiting approach might offer hope of preserved energy,
appetite, and freedom from disabling pain, albeit with considerable risk of
dying sooner. Does one of these options offer all the good of the other plus
more? If it did, there would be no need for choice; we would be irrational
not to take the greater good. But choice is required. The benefits and
burdens of each option differ, and they allow for no common scale of
goodness or value through which to resolve one’s deliberation.
THE FIRST MORAL PRINCIPLE
What, then, should characterize our relationship to those goods that are
basic aspects of all human beings’ flourishing? How can we make upright
choices when faced with options that involve incommensurable goods and
persons? The basic norm would seem to be as follows: in acting and
willing, always be fully open to the goodness of the goods and to the
persons for whom those goods are good. This seems to be a demand of
reason, and hence a requirement of practical reason. Practical reason orients
us to the goods as we consider what to do, and reason recognizes those
goods as giving a point to what we do. Reason, then, requires that we not
close ourselves off to goods and persons.
First, let’s consider how emotion or prejudice might lead us to be less than
fully open to human goods or persons. Consider a situation in which we
very much want to experience the benefits of a particular good. This good
especially appeals to us or plays an important role in our own or our loved
ones’ lives. All humans respond more immediately, on some occasions, to
some goods rather than others. For example, a particular opportunity to
obtain knowledge (say, by reading a book) may seem tedious by
comparison with a desirable opportunity for play. On some occasions,
options are not merely tedious but painful—going through surgery, working
through a difficult rehabilitation, or telling a patient an unpleasant truth. On
still other occasions, the good at stake seems of overwhelming importance
because it is under threat: our life, for instance—or our career, our family,
our religion, and so on.
These responses are understandable, but under the influence of emotion, we
sometimes make choices that are not fully open to all goods but instead
privilege one or another in an unreasonable way. We might simply choose
directly against one good for the sake of another: we deliberately inflict
harm on one person for the sake of benefiting someone else, or we
deliberately damage one instance of a basic good for the sake of another.
Such actions make sense only if goods and good options are weighable.
Harming or destroying a good for the sake of some other good makes sense
only if that other good is a greater good. Yet the notion of “greater good” is
out of place in speaking of basic goods.
Thus, a norm emerges from consideration of the rational requirement of
openness to all goods: one should never directly damage or destroy one
instance of a basic good for the sake of some other or “greater” good. Of
course, one should not damage or destroy an instance of a basic good out of
hostility, either, whether hostility toward that good or toward the person
experiencing the good. So this norm can be broadened: one should never,
for any reason, directly damage or destroy an instance of a basic human
good. This norm is echoed in the Way of Medicine’s millennia-old
commitment to do no (intentional) harm. We might say that practitioners of
the Way have seen in the domain of medicine and the basic good of human
health a genuine requirement of practical reason, and they have sought to
respect that requirement in the norms of their practice.
Another requirement of reason has a justification similar to the previous
one. Suppose we are attached not just to some good but to some person.
Such attachment is often quite reasonable: we have attachments to our
children, spouse, and parents, as well as to our neighborhood, workplace,
and church. These attachments play a legitimate role in our moral
deliberations. Sometimes, however, our emotions lead us to privilege some
persons over others in ways that are unreasonable. For example, we allow
our daughter to take a greater share of something than the other children,
because she is ours; maybe we cheat in our effort to get into medical school,
thus privileging ourselves over others who are more qualified. How can we
test for this kind of arbitrary privileging in our personal attachments?
One traditional test is the Golden Rule: do unto others as you would have
them do unto you. When our privileging diminishes others in such a way
that we would resent such privileging were we on the receiving end, we
have reason to think that we are acting unreasonably, arbitrarily, and
unfairly. Similarly, when we treat others less well than we would expect our
loved ones to be treated, we are again acting unfairly. A norm of fairness,
clearly violated in the Tuskegee experiments, emerges from the requirement
to be open to the goods in all persons.
Of course, sometimes our commitments require that we give some people
special treatment: physicians’ commitments to their patients, for example,
create a special space in their lives for those patients and their needs. But
this seems clearly fair: everyone has reason to accept the possibility of such
special commitments, for without them, there could be no medical
profession, no doctor-patient relationships, none of the benefits that come
from a doctor’s special knowledge and even her friendship with her
patients.
At the same time, the Golden Rule—the norm of fairness—does chasten
even such commitments to patients. Physicians will find some patients more
pleasant or attractive than others, as does any teacher with respect to her
students. When those feelings are allowed to unduly shape medical practice
or teaching, a key requirement of practical reason has been violated. To
choose one visible example, consider the case of Jahi McMath, an African
American teenager in Oakland who was diagnosed as brain dead following
a terrible complication of a minor surgery. As described in the New Yorker,
biases of race and class appear to have affected how medical professionals
and professional ethicists treated Jahi and her family.⁶ Insofar as that is true,
such treatment was unfair and did not adequately meet the requirements of
practical reason.
PRINCIPLISM AND KANTIAN ETHICS
Medical ethics as a field emerged in the twentieth century partially in
response to abuses and scandals in the medical profession and partially
because the profession seemed insufficiently self-critical with respect to its
ethical commitments. The emergence of new medical technologies added
fuel to the fire by generating dilemmas that seemed to call for new forms of
deliberation. “The Belmont Report,” issued by the National Commission for
the Protection of Human Subjects of Biomedical and Behavioral Research,
identified three principles to govern moral action in biomedical research:
respect for persons, beneficence, and justice.⁷ Within a few years, Thomas
Beauchamp, a philosopher and original member of the commission, and
James Childress, a theologian, had revised and expanded these to four
principles to govern the practice of medicine: autonomy, beneficence,
nonmaleficence, and justice.⁸
Beauchamp argued that what has come to be called principlism marked an
important advance in bioethics. Doctors, he explained, had been attending
only to beneficence and nonmaleficence—to doing good and avoiding evil
—and so had come to overlook abuses of patient autonomy, as when
patients were treated without their consent, and abuses of justice, as when
vulnerable populations such as disabled children or poor black
sharecroppers were exploited as research subjects. Principlism not only
responded to insufficient self-reflection, expanding medical technologies,
and abuses of medical ethics; it also seemed to overcome an intractable
dispute between two competing schools of ethical thought:
consequentialism (discussed above) and Kantian deontology (discussed
below). Consequentialists and Kantians espouse different and irreconcilable
first principles, but Beauchamp and Childress discovered that even persons
with radically different moral foundations could agree on so-called mid-
level principles. Principlism appeared to advance bioethics by providing a
common approach, even if it eschewed moral foundations.
Interestingly, a number of competing approaches arising in response to
principlism also avoided first principles. Bernard Gert and K. Danner
Clouser put forward a rule-based approach similar in many respects to
principlism, and Albert Jonsen and Stephen Toulmin advocated an approach
based on casuistry that looked at paradigm cases and worked by analogy
from there to uncertain cases. Theorists including Edmund Pellegrino and
David Thomasma defended approaches centered on the virtues that medical
professionals should have.⁹
These approaches have varying strengths and weaknesses, but all (with the
possible exception of Pellegrino and Thomasma’s) share an opposition to
foundationalism, to beginning from first principles from which norms (or
rules, principles, or even virtues) are derived. Instead, these approaches
typically work with the concept of reflective equilibrium, which involves
moving back and forth between general and abstract norms and concepts,
on the one hand, and the features of particular cases, on the other. Many
people, especially those engaging in actual clinical practice and not
operating “by theory,” have found these reflective equilibrium-based
approaches refreshingly practical. Notwithstanding their flexibility and
practicality, in our view these approaches fail insofar as they lack moral
absolutes.
Note that we are not claiming that one right answer always exists for
everyone and everybody. In very many circumstances, various options are
all morally permissible. In many other circumstances, one cannot determine
what should be done without taking into account the personal character,
choices, commitments, and features of the agents in the situation. No
impersonal algorithm can churn out the right answer for everyone in a
similar situation. Accordingly, one needs the virtue of prudence, along with
a willingness and ability to reflect on one’s particular situation, in order to
arrive at reasonable decisions.
So in speaking of moral absolutes, we do not claim that some onesize-fits-
all model should settle all moral questions, but we do claim that some
actions never should be performed, regardless of the circumstances.
Historically, the medical profession has acknowledged such moral
absolutes. The Hippocratic tradition, for example, held that physicians
should never kill, and this norm that arose in a pagan society has been
affirmed in Jewish, Christian, and Muslim cultures. It is hard to see how
ethical approaches that have no foundations can support this or other
absolute norms. Rather, nonfoundationalist approaches, particularly
principlism, commit to balancing or weighing competing principles in
different circumstances based on the features of each individual case. But if
all principles (or rules, cases, or virtues) may be weighed against one
another, and if all are subject to possible revision in light of a particular
circumstance, none are absolute. Nothing, that is, can be ruled out
altogether before considering the circumstances.¹⁰ Thus the seemingly
absolute demands of human rights—against acts such as rape, torture, and
killing the innocent—cannot be absolute after all within a framework like
principlism. In contrast, our approach leaves room for these and other moral
absolutes.
A related difficulty with principlism and many of its descendants is that
they give no account of what is good.¹¹ Consider autonomy, the first of the
four principles. Respect for autonomy is essential in medicine, but why?
What good or goods does respect for autonomy serve? Similar questions
arise with respect to beneficence and nonmaleficence. If we are to do good
and avoid doing evil, we must know what is good. Even justice requires an
account of what is good, insofar as justice often involves rightly distributing
goods and is premised on concern for the good of others.
In this light, we need to unearth the foundations of ethics and seek an
account of what is truly good. In our proposal regarding the basic goods, we
attempt to provide the deeper content necessary to make sense of
Beauchamp’s and Childress’s midlevel principles, the casuistry of Jonsen
and Toulmin, and so on. Moreover, these basic goods allow us to identify
moral absolutes, actions that should never be taken precisely because they
involve acting contrary to a basic good. Such actions violate the principles
of beneficence and nonmaleficence by contradicting genuine goods and
thereby human flourishing. They violate justice because they disregard the
good of another.
Similar points can be made about Kantian ethics. In his attempt to drill
down to the foundations of morality, Immanuel Kant held that a
“categorical imperative” was an absolute prescription of reason and that the
categorical imperative could be formulated as follows: “Act in such a way
that you treat humanity, whether in your own person or in the person of
another, always at the same time as an end and never simply as a means.”¹²
Put another way, Kant saw the foundation of ethics as resting on a principle
of respect for persons. Human beings are never to be treated as mere things
—disposable or usable for others’ purposes—but rather must be treated as
beings of noncontingent, immeasurable worth. Kant’s approach has obvious
merits when we consider experiments performed on the unconsenting and
unsuspecting not for their own benefit but to serve others’ interests. But
Kant also left out of consideration, quite deliberately, concern for human
good. In Kant we find a prototype of what later came to be described as
prioritizing the right over the good, a feature of Kantianism that prevents
one from determining the content of what respect for persons requires.
This content-thin feature of Kantianism is especially conspicuous in the
work of thinkers who reduce respect for persons to respect for persons’
autonomy. What does respect for another as a person mean? It means, on
one account, respecting another’s capacity to respond to human reasons. In
that construal, we violate the categorical imperative when we act toward
another without giving reasons and obtaining acquiescence in those reasons
—in other words, when we act without the other’s informed consent.
But this account of respect also seems thin, reduced to respecting what the
other happens to want. Without an account of what is genuinely good for
human beings, we have no objective standard against which to judge
whether a reason is good—whether, for example, what a patient wants
aligns with or contradicts her genuine welfare or flourishing. We are not
here advocating overriding a patient’s refusal; there are good reasons to
respect and insist on patient consent. Nevertheless, if the doctor is to give
good reasons, and if the patient is to consider and make an autonomous
decision on the basis of those reasons, both parties must have access to
some standard for good reason. That standard, we argue, is found in the
basic goods and in openness to all such goods in all persons.
The inheritors of the right-is-prior-to-the-good maxim have played another
important role in the emergence of the provider of services model (PSM),
specifically in its development as a matter of politics. Followers of the
political philosopher John Rawls have used that maxim, as well as Kantian
thought about reasons and respect for persons more broadly, to argue that
only “public” reasons are legitimate for public deliberations and debate.¹³
That view has radical consequences for the role of religion in bioethics,
especially in bioethics as it plays itself out in political debate, deliberation,
legislation, and adjudication. The Rawlsian emphasis on public reason
threatens to push religious considerations out of the public sphere—with
respect not only to politics but also to the public practice of medicine.
Medical professionals, in a Rawlsian model, must resist the influence of
religious reasons on their professional deliberations and clinical practices.
We assess and criticize this claim in our final chapter, when we take up
conscience and medical ethics. But in this chapter the topic of religion
raises a somewhat different though ultimately related issue. Religion clearly
plays an ordering role in some agents’ lives, a role that could be described
as vocational; medicine also seems to play such a role.
VOCATION
At the foundation of ethics we find basic human goods that are never to be
violated. But any ethic concerned with human flourishing needs more than
prohibitions; it also needs an ethic of pursuing human goods.
According to practical reason, how should this pursuit of human goods be
organized? Why organize at all? Why not simply pursue human goods
serially, acting for the sake of this good now, of that good then, in
accordance with whatever seems appropriate and desirable in each
situation? This question almost answers itself. A life characterized by
pursuing goods in such a serial manner, without organization or structure,
will inevitably be shallow and chaotic in ways detrimental to human
flourishing.
Consider, for example, the following sorts of difficulties. First, such a life
could not achieve excellence at anything. Many instances of basic goods
can be realized only through sustained effort and commitment. Although
one can learn new things from social media and play at the guitar in one’s
spare time, one cannot realize the good of knowledge available to a first-
rate scholar without years of study or the goods of play and aesthetic
experience available to a professional guitarist without years of practice.
Similarly, a physician cannot bring about her patients’ health without first
committing to decades of study, practice, and work. Sustained commitments
are necessary to realize basic goods in any depth.
Second, achieving basic goods often requires making commitments to other
persons. In many cases, pursuit of a good is best organized socially. One
cannot become a doctor or a philosopher, for example, without cooperating
with other persons. Moreover, some goods are social by nature: no one
flourishes, for example, without the good of friendship, yet friendship
involves committed relationships with other persons. Achieving basic goods
requires a settled will to work with and for others.
Third, once one starts to make commitments—to a profession, a spouse, a
church, and so on—one quickly encounters apparent conflicts between
these commitments. Therefore, one must put one’s commitments in order to
be genuinely oriented to human flourishing. We need something like a
rational life plan for our actions and lives.
Even so, the idea of a rational life plan fails to capture adequately what we
are addressing. First, the language “rational life plan” seems to suggest that
we have the power, through a firm will and expert planning, to author our
lives as we see fit, but this surely is an error. In some sense, humans are the
authors of their own lives through their choices, commitments, and actions.
Yet people face in life much more than what we choose or will. Things
happen to us, and a good life depends on responding well to such
happenings and integrating what has happened into the order of our lives.
Rarely can we do so without revising our assumptions about that order.
The notion of a rational life plan is less than satisfying for a second reason:
it fails to capture the way in which many people believe themselves to have
been called to the particular shape of their lives in a manner beyond their
control. The concept of calling—a synonym of “vocation”—has roots in
traditional Christianity, in which God calls human persons to various and
distinct lives of good works, marking out their good deeds in advance for
them. In this understanding, one may be called to be a doctor, rather than
simply deciding to be one, and in accepting the call, one is constituting
oneself in the deepest way not simply as a doctor but also as a person
responsive to and responsible before God.
Interestingly, although the concept of calling has roots in Christianity, today
most US physicians, regardless of their religious affiliations, use the term to
describe their practice of medicine. Indeed, even among physicians who say
they have no religion, and among those who say they never attend religious
services, more than half agree with the statement “For me, the practice of
medicine is a calling.”¹⁴
This result should not surprise us in light of the kind of good that health is.
Like knowledge or friendship, health transcends any one person’s desires or
capacities. Health is good for all human beings, regardless of whether they
want it. Moreover, health is a good of such breadth and depth that one can
pursue it in countless different ways and explore its meaning and potential
for all time. What’s more, while it is incommensurable with all other goods,
health nevertheless serves as a necessary condition for the pursuit of all
other goods. And so, faced with such a good, even nonreligious persons
may find that this good calls out to them, inviting them to a lifetime of
service. In this sense, physicians might rightly describe their practice of
medicine as part of their calling or vocation.
Vocations shape the lives of individuals in at least two important ways.
First, vocational commitments generate new obligations. When spouses
marry, they commit to one another and to a form of life that generates new
obligations for each of them: toward one another as well as toward any
children who might result from their marriage. When a student freely makes
a vocational commitment to practice medicine rather than teaching
philosophy, that commitment requires an array of further commitments and
obligations (e.g., to complete premedical courses, take the MCAT, and
apply to medical school). A vocational commitment serves in some ways as
a promissory obligation, binding an agent voluntarily in a way that she
would not otherwise have been bound.
But vocational commitments also free agents from other obligations. A
person’s vocational commitments to his own children create obligations to
care for them that result in having lesser obligations to care for other
people’s children. A physician’s obligations to her profession and to the
persons to whom she has obligations within that profession (especially her
patients) similarly require her to dedicate her time and effort to meet the
needs of those persons, not just any person or every person. Here again,
vocational commitments are like promises that, by creating specific
obligations, free persons up from more general and unspecified demands
that might have been placed on them.
How does one discern one’s vocation? Obviously, many people are drawn
to the prospect of being a doctor. Equally obvious, however, is that among
these many are not “called” per se. How should a person think about
whether she is called to this profession or not?
In one way, the answer to this question depends on everything we say
through the rest of this book. If we correctly assess what being a doctor
means, what the practice of medicine is for, and what moral norms
healthcare professionals should abide by, a person should not commit to the
medical profession unless she can willingly and enthusiastically embrace
and internalize the Way of Medicine. More specifically, she shouldn’t
become a doctor unless she is willing to embrace the norm of never
intending to damage the health of any person. In our approach, one who
thinks of her mission as primarily to minimize suffering, even by killing if
necessary, does not understand the vocation of medicine and so cannot be
called to it in this case.
More generally, though, one can say that vocational commitments should be
guided by ability, interest, opportunity, and need. Ability is obvious. No one
can become a good surgeon without developing some requisite skills, and
some lack the capacity, realistically, to develop those skills. Moreover,
“skills” are not enough; they must be joined to dispositions that some
people will struggle to develop. A physician in training who dislikes people
is in the wrong line of work. The same is true of a pediatrician who finds
children tedious, an aspiring surgeon who recoils at the sight of blood, or
any medical student or physician motivated primarily by money. The
medical profession rightly plays gatekeeper with regard to these skills and
dispositions, rejecting many applications to medical school or residency
training. But the profession’s gatekeeping role cannot substitute entirely for
the scrutiny that an individual should give to her own deliberations about
whether she has the ability to fulfill the requirements of particular line of
work. If she does not, she has reason to believe that she is not called to that
line of work.
What about interest? Is it possible to devote one’s life to a practice or
profession in which one has little interest? Yes, clearly. Some have no
option but to do work in which they have little interest. But other things
being equal, one’s interests and passions serve as helpful guides as to what
one is called to do. Suppose an individual has gifts that make him capable
of becoming either a fine surgeon or a fine musician, and he is passionate
about music but indifferent to medicine. Then, it seems to us, despite some
obvious economic trade-offs, that a life in music might be more appropriate
for that individual. Passion, however, is not enough. In our culture we
frequently hear outrageously talented athletes or other performers say, “You
can do anything you put your mind to.” No, you cannot. That caveat
notwithstanding, human beings are not simply rational; we are also
emotional, and the basic good of integrity is enriched in our lives when
reason, choice, action, and emotion all harmonize with one another. So
attending to one’s emotions, passions, likes, and dislikes is an important
part of discerning one’s vocation.
Third comes opportunity. Recall that the order of our life is never entirely
of our own making. Rather, our lives are structured to a great extent by
what happens to us, most of which we cannot control. Similarly, the call to
be a doctor depends on many circumstances beyond one’s control. Many
people around the world would make terrific physicians but never have the
opportunity to even consider that possibility. Many others, despite ability
and interest, will never be offered a spot in a medical school. Such persons,
upon realizing that an opportunity to become a physician will not open up
for them, must acknowledge that they are not called to the work. They must
then think creatively and act energetically to discern a new course—one
that may or may not intersect with the world of medicine.
Finally there is need. As is perhaps obvious with respect to medicine, our
vocational commitments should respond to needs that we can meet. A life
of pursuing human goods is not a self-serving life but a life of self-giving.
Here again, we find helpful confirmation in the reflections of some
religious traditions. Consider, for example, this claim of the Second Vatican
Council: “It follows, then, that if human beings are the only creatures on
earth that God has wanted for their own sake, they can fully discover their
true selves only in sincere self-giving.”¹⁵ In discerning vocation, a person
must give special attention to the question of what needs he can address
through his ability, opportunity, and interest.
The domain of vocation illustrates a claim we made earlier in this chapter.
Although our natural law approach to understanding the requirements of
practical reason asserts moral absolutes, it does not assert a one-size-fits-all
picture of the moral life. Vocations are personal, requiring that an individual
discern both that to which she is called and also that which is therefore
required of her (and no longer required of her) in terms of her vocation.¹⁶
The need for such discernment highlights the importance of autonomy in
the moral life, including the moral lives of patients and physicians.
CONCLUSION
In chapter 1 we began to articulate the Way of Medicine’s understanding of
the practice of medicine. In this chapter we have supplemented that inquiry
with reflection on the broader requirements of practical reason, which arise
from recognizing basic human goods that give us reasons to act for the sake
of human flourishing. Recognizing the nature of those goods has led, in
turn, to the articulation of three requirements of practical reason: (1) basic
goods should never be intentionally damaged or destroyed, (2) we should
be fair in our distribution of benefits and burdens as regards other persons,
and (3) we should organize our lives around vocational commitments. How
does all of this bear on the clinical encounter and the doctor-patient
relationship? We now turn to that question.
CHAPTER THREE
The Doctor-Patient Relationship
Let’s return to the patients we introduced you to in chapter 1, presenting a
bit more information about their specific health concerns:
Cindy Parker goes to student health seeking a prescription for
contraceptives.
Abe Anderson asks his physician for antibiotics to treat a respiratory
infection.
Nora Garcia wonders if she should have a do-not-resuscitate order.
How should a clinician respond in each of these clinical encounters? What
norms guide good medical practice? What kind of relationship should
physicians cultivate with their patients, and for what virtues should they
strive? The above cases reflect routine encounters between patients and
their clinicians, and here in the everyday practice of medicine, we begin to
see how the Way of Medicine makes a difference for clinicians in
understanding their professional ethical obligations.
Clinicians’ approach to their obligations to patients has shifted over the past
half-century, contemporaneous with the rise and subsequent evolution of
the provider of services model (PSM). Modern bioethics emerged in part
because of physicians’ abusing their power, both by conducting unethical
research on patients and by paying insufficient regard to patients’ proper
authority to decide how medicine would be deployed on their behalf. In the
1960s and early 1970s, the patients’ rights movement contended that
traditional medicine gave physicians too much authority, making patients
unjustifiably vulnerable to their physicians’ whims.
From many quarters came critiques of what came to be called paternalism
(pater is Latin for father), a model of the doctor-patient relationship in
which the physician, like a parent, has the authority to tell the patient what
to do. The physician orders; the patient obeys. In strong paternalism, the
good physician would tell Cindy Parker whether to use birth control and
which birth control technology to use. He (prior to 1970, almost all
physicians were men) would also tell Abe Anderson what to do about his
upper respiratory infection and decide whether Nora Garcia would be
resuscitated. The physician would make all of these decisions and give the
relevant orders based on his superior knowledge of medical science and
health. Cindy, Abe, and Nora, as good patients, would obey the physician’s
orders.
This image of the doctor-patient relationship in bygone days is something
of a caricature, of course. Physicians would not stay in business long
without cultivating patients’ trust and accommodating their concerns. But
this image of strong paternalism helpfully marks one end of an ideological
spectrum regarding the doctor-patient relationship and the distribution of
authority and responsibility within it. It provides a view of what the modern
medical ethics movement reacted against: unchecked power, unexamined
professional authority, male privilege, and unjustified control over patients.
We do not defend strong paternalism. But we note that shortly after the
patients’ rights movement successfully established patient autonomy as the
driving principle of medical practice, prominent practitioners and critics
began to worry that in its retreat from paternalism, the pendulum had swung
too far,¹ toward a normative vision of the doctor-patient relationship in
which the good patient chooses and the good physician provides. We see
here the essence of the PSM.
The shift from strong physician paternalism to strong patient autonomy
depended on and contributed to the growing moral confusion regarding the
ends of medicine that Kass described in 1974.² That confusion also was
described in a seminal 1981 paper written by physician and ethicist Mark
Siegler: “Searching for Moral Certainty in Medicine: A Proposal for a New
Model of the Doctor-Patient Encounter.”³ As the title suggests, Dr. Siegler
was searching for a solid ethical foundation for clinical decisions that
doctors and patients would make, and he was doing so at a time in which all
such foundations appeared suspect. “What duties, obligations, and
responsibilities,” he asks, “does the physician incur, voluntarily and
autonomously, when he chooses to become a physician?”⁴
Siegler’s paper was cited extensively in a 1982 report by the President’s
Commission for the Study of Ethical Problems in Medicine and Biomedical
and Behavioral Research. The Commission wrote:
The role of the health care professional . . . appears to be in a “phase of
incomplete redefinition,” . . . “judgments of conscientious persons have
become divergent and perplexed” and societal consensus does not exist. No
longer are the proper ends and limits of health care commonly understood
and broadly accepted; a new concept of health care, characterized by
changing expectations and uncertain understanding between patient and
practitioner, is evolving. The need to find an appropriate balance of the
rights and responsibilities of patients and health care professionals in this
time of change has been called “the critical challenge facing medicine in the
coming decades.⁵
Almost four decades later, judgments of conscientious persons remain
divergent regarding a number of clinical practices, and societal consensus
regarding the ends of medicine remains elusive. As we noted with respect to
balancing principles, clinicians and ethicists have no way to balance
different moral claims without a shared standard regarding the purpose of
medicine. What one party (e.g., the patient) judges to be morally and
medically necessary, another party (e.g., the physician) may judge to be
illicit and unprofessional; benefits and harms depend on perspective.
Without a shared standard, then, beneficence defaults to providing what the
patient values, and nonmaleficence defaults to refraining from actions the
patient does not value. Justice defaults to requiring the clinician to
accommodate the patient’s right to choose. As a result, bioethics reduces to
a proceduralist approach in which being ethical means determining who has
the authority to make a choice and facilitating that choice insofar as
possible.
Moreover, the notion of balancing rights and responsibilities suggests that
clinicians and patients relate to one another as rivals expecting conflict. The
language of balance reflects a focus on defending the rights of one party
against those of another rather than on cultivating trust and cooperation
around a shared pursuit. In the absence of some objective standard to guide
medicine, our culture understandably situates authority with the more
vulnerable individual: the patient whose rights are threatened by the
physician’s power. The responsibility of the physician, then, is not to pursue
the patient’s health according to the physician’s best judgment. Rather, the
physician’s responsibility is to respect the patient’s right to make informed
choices regarding which healthcare services the patient will receive, as long
as the patient does not request something that breaks the law. By default
and prescription, autonomy becomes the overarching principle.
As we noted in the introduction to this book, few physicians consistently
follow the PSM. Few physicians would agree, for example, to prescribe
antibiotics just because a patient really wants them or to prescribe Adderall
for a patient who simply wants to study more effectively. In medical
practice, autonomy does not do the work that PSM theory suggests it
should. Many physicians implicitly adhere, at least partially, to the Way of
Medicine.
We return to our clinical cases to see the difference it makes to understand
medicine as the PSM does versus understanding medicine as the Way of
Medicine does—as a practice oriented toward the patient’s health as one
basic human good.
CINDY’S CHOICE
Cindy Parker is a twenty-year-old undergraduate student. She presents to
the student health clinic to see a family medicine physician. The physician
asks, “What brings you to see me today?” Cindy responds, “I just need a
prescription for birth control.”
How should the physician in this case respond? Under the PSM, the answer
is obvious: prescribe what the patient requests. Why? Because the
intervention is lawful and the patient has autonomously requested it.
Respect for Ms. Parker’s autonomy requires the physician to prescribe the
medication unless some unusual condition is present. Moreover, Ms. Parker,
like millions of other women, values contraceptives. So prescribing
contraceptives satisfies the principle of beneficence—it provides something
good for her from her perspective. In addition, contraceptives are relatively
safe; they increase the risks of some injuries to a woman’s health, such as
blood clots in patients who smoke, but such risks remain relatively small
and can be mitigated with proper education and triage. Nonmaleficence,
therefore, is satisfied. Finally, this is also a matter of justice. Women who
take contraceptives are thereby empowered to complete their educational
and vocational trajectories and to bear children at times that align with their
personal and family needs. It would be arbitrary and unjust for Ms. Parker’s
physician to refuse to prescribe contraceptives, given that physicians
prescribe all kinds of medications that are riskier and achieve goals that
patients value much less.
In contrast, the Way of Medicine urges us to ask a different set of questions.
The first question is: What do contraceptives have to do with health? In this
case, how is prescribing contraceptives consistent with the physician’s
vocational commitment to preserve and restore the health of Cindy Parker?
As we’ll see in chapter 6, the answers to these questions are not as
straightforward as physicians’ customary practices suggest. For the
moment, though, suffice it to note that the Way of Medicine suggests it
would not be arbitrary for Ms. Parker’s physician to decline to prescribe
contraceptives if, in the physician’s reasoned judgment, the contraceptives
either contradict or are beside the point with respect to the patient’s health.
ABE’S REQUEST
Abe Anderson is a fifty-year-old carpenter. He has smoked two packs of
cigarettes each day for thirty years. Mr. Anderson has a particularly
bothersome respiratory infection, with fever, fatigue, and a hacking cough
that is productive of thick yellow sputum. His wife has persuaded him to see
a physician. Mr. Anderson asks for antibiotics.
This seemingly anodyne case of routine primary care medicine exposes
inconsistencies in how physicians understand their obligations, and it opens
up critical distinctions between the Way of Medicine and the PSM. Should
Abe’s physician prescribe the requested antibiotics? If so, why? If not, how
can she justify the refusal?
To experienced clinicians it may seem obvious that the physician should
judge whether she thinks the respiratory infection is viral rather than
bacterial and, if it is viral, she should refuse to prescribe antibiotics. This
refusal would be justified because physicians are not obligated to prescribe
treatments that do not work (e.g., antibiotics for viral infections), because
the principle of justice requires considering the downstream effects of
antibiotics on future patients (namely, greater bacterial resistance to
antibiotics in the community), and because the principle of nonmaleficence
would encourage the physician to avoid the adverse side effects of the
antibiotics for Abe, including potential allergic reactions and loose stools.
In this case, it might be argued, the physician has strong medical reasons for
refusing what the patient requests.
But reality is more complicated. The risk of significant harm to Mr.
Anderson from a course of antibiotics is quite low, likely lower than the risk
of harm to Ms. Parker posed by long-term use of hormonal contraceptives.
Moreover, there is some nonzero probability that Mr. Anderson’s physician
will mistake the diagnosis, failing to see that Mr. Anderson does in fact
have a bacterial infection and would recover more quickly with antibiotic
treatment. Doesn’t Mr. Anderson have a right to accept the risks of the
antibiotics and make an informed choice about whether to take them?
Doesn’t respect for his autonomy require accommodating his choice?
Apart from the ambiguities posed by probability and uncertainty, we have
already noted that the PSM eschews any shared standard against which to
judge requirements for beneficence and nonmaleficence. Mr. Anderson
might say, “Doc, I value having the antibiotic, even if you do not think it is
likely to benefit me. I think it will be good for me, and after all, it is my
body and my health we are talking about, right?” He might note that the
remote possibility of harm caused by the antibiotics is outweighed by the
certain harm of him worrying for days that he might develop bacterial
pneumonia, not to mention the cost (another harm) of having to come back
to see the physician again if he does.
It turns out that in the PSM, even the claim of having medical reasons to
refuse Mr. Anderson’s request starts to break down in light of the fact that
the profession allows physicians to prescribe antibiotics in such cases, and
many physicians do. In the absence of a reasonable standard—say, health
objectively defined—the physician’s medical reasons appear to be arbitrary
impositions of power over the patient, unjustly curtailing the patient’s right
to make informed autonomous choices regarding his medical care.
As both Abe’s and Cindy’s cases display, invoking midlevel principles does
not lead to moral clarity without an account of what medicine is for that
might help to specify those principles. Principles can be balanced ad
nauseam, but the balancing itself appears arbitrary and determined by
power relations unless we presume that medicine is oriented toward a real
good that can be known and to which the clinician is reasonably committed.
For the Way of Medicine, Mr. Anderson’s case remains complex, but the
complexities shift. The physician begins with a commitment to the good of
Mr. Anderson’s health. Her actions are reasonable insofar as they are
conducive to Mr. Anderson’s health, and they are unreasonable insofar as
they contradict his health. This does not mean that Abe’s request has only
one ethical response. Medicine is beset by uncertainties and probabilities,
after all, and one physician might judge that antibiotics are worth
prescribing despite the low probability of benefiting Mr. Anderson’s health,
because the corollary risk of harm is so low. Another might judge that
antibiotics should be avoided despite the low risk of harm because the
likelihood of benefiting Mr. Anderson is also low.
According to the Way of Medicine, the physician has the authority to decide
which interventions to offer, based on her threshold judgment regarding
whether the interventions in question will preserve or restore the patient’s
health (and there is proportionate reason to accept their side effects; more
on that in chapter 5). A good physician will not insist that a patient follow
the one route the physician believes is best. The physician may advocate
one strategy, but she will allow the patient to choose a different course as
long as she determines that the patient-suggested course sufficiently
addresses a health-related need and does not violate other moral
requirements. Making such determinations is ultimately the work of clinical
judgment. Physicians attain clinical judgment, which in turn should be
guided by the virtue of prudence, only through a combination of experience,
reflection, and commitment to the true end of medicine.
NORA’S LIMITS
Nora Garcia is an eighty-year-old widow who in recent years has grown
frail. Mrs. Garcia comes for her usual quarterly appointment with her
geriatrician. She notes, “I feel like I don’t have long to live. I am getting
tired. I don’t want to be put on all of those machines my husband was put
on. Should I have a do-not-resuscitate order?”
What is the doctor’s role with respect to Nora? Should he encourage her to
make the decision that he believes is best or simply give her the facts? What
would characterize good counsel about limiting the use of medical
interventions that might otherwise extend Mrs. Garcia’s life?
Once again, under the PSM, Mrs. Garcia’s physician should seek to help her
make the decision that fits what Mrs. Garcia values. The physician should
ask her what she cares about and offer her strategies that align with her
values, including, perhaps, a do-not-resuscitate order.
The PSM does not encourage the physician to ask what would be a good
decision for Mrs. Garcia to make. As long as Mrs. Garcia’s choice is
permitted by current law and policy, her choosing alone makes the choice
ethical. The physician’s role is to give accurate information to help her
make an informed choice.
By contrast, in the Way of Medicine the physician encounters Mrs. Garcia
with a preestablished orientation toward her health. That does not mean that
the physician is determined to do everything possible to preserve any
measure of health. Indeed, the wise physician acknowledges that health is a
good that can be possessed only in part, and only for a time. The wise
physician also recognizes that health is not the only good the patient should
consider. The physician, then, respects Mrs. Garcia’s authority to make
judgments about the extent to which efforts to preserve her health fit her
vocation, all things considered.
Unlike under the PSM, however, a physician practicing according to the
Way of Medicine does not seek a decision that aligns with Mrs. Garcia’s
wishes. Rather, he seeks a decision that makes wise use of medicine
(including by putting some limits on medical interventions) to preserve and
restore Mrs. Garcia’s health, given her vocation and what she will consent
to. The physician takes into account the fact that Mrs. Garcia’s health is
limited, her mortality bears down on her, and other goods might be more
important to her than her health. He counsels her to make the decision that,
all things considered, he believes is best, and he respects her authority to
decline his recommendations. He might readily encourage the patient to
have a do-not-resuscitate order. He might encourage her not to. But through
it all, he remains committed to serving the health needs of his patient, Mrs.
Garcia.
SOLIDARITY AND TRUST
A particular virtue is essential for manifesting and maintaining the
commitment to serving patients’ health needs: the virtue of solidarity. The
relationship between the physician and Mrs. Garcia must be characterized
by trust and trustworthiness. In the remainder of this chapter, we address the
roles of solidarity and trust in the Way of Medicine.
Solidarity and trust are features of any flourishing community, and also of
the community formed between doctor and patient. Recall that physicians’
constitutive vocational commitment—the commitment that distinguishes
them from philosophers, priests, and dancers—is to health. But physicians
do not commit to health in the abstract or even to the health of populations;
rather, they commit to the health of their patients—that is, health as
instantiated in the particular persons to whom they attend.
Put another way, a doctor is vocationally committed to a specific kind of
community with a particular kind of common good. A common good is a
good mutually willed by participants in a cooperative, mutually giving
relationship. The common good of friends is their friendship, plus whatever
other goods they pursue together as friends. The friendship example
highlights something that applies universally: one cannot will the common
good of a community without also willing the good of the community
members. Some group members may be in it for themselves, and if so, they
frustrate the possibility of the group’s forming a genuine community.
Humans can reach their fulfillment only in community, and genuine
community, including that formed between a doctor and her patient,
requires its members to will and act for each other’s good.
Solidarity
Solidarity is the name for this stance without which there can be no
common good, no genuine community, and ultimately no human fulfillment.
Solidarity is a firm and enduring commitment to the good of other persons
and thus to the common goods of one’s communities. Solidarity is not
simply a concern for the collective, humanity in the abstract, or goods in
the abstract. It requires concrete relationships in particular communities,
including the relationships that form communities between physicians and
patients. The Way of Medicine requires physicians to show solidarity with
their individual patients—to be firmly and concretely committed to their
patients’ good.
But how can a patient have solidarity with his doctor, since the purpose of
the doctor-patient relationship is to pursue the patient’s good? Do doctors
and patients not have a rather one-sided community? The answer is simple
but important: patients should will the doctor’s good in the way that patients
can, which is to will their doctor to be a good doctor in all the relevant and
necessary ways. The patient wills this not simply so that she will be cured
(she might not be, even with the best doctoring) but also because being a
good doctor is good for the doctor; through practicing good medicine the
doctor flourishes and finds fulfillment as a person. Thus, when a patient
treats the doctor as a functionary or lies to or seeks to manipulate the doctor,
the patient fails to show solidarity. Such failures of solidarity rupture the
community of the doctor-patient relationship as much as do failures of
solidarity on the part of the physician.
Physicians can and do fail in solidarity toward their patients. Some doctors
are in medicine for themselves, regularly putting a patient’s good behind
other concerns, such as financial gain, time at the golf course, or the
demands of an insurance company. These failures are obvious, but
physicians are also prone to two less obvious failures of solidarity.
(1) Physicians can be concerned with medicine and health without being
concerned for their patients. Perhaps a physician sees health as a goal and
treats his patients as opportunities to achieve health. This detached
approach makes some methodological sense. In the surgical operating
room, efficiency and effectiveness are often served by treating the patient as
an object subject to scientific investigation and technical control. The
problem emerges when such treatment is not governed by an overarching
commitment to this patient’s good. Such patients often report that they were
treated “like an object.” Insofar as a surgeon sees a patient as a technical
problem, for example, he fails to see that patient as a person. Medical
subspecialization exacerbates this tendency, habituating physicians to focus
only on the diseased or defective parts of a patient rather than on the patient
as a whole. Patients also often report that they were treated “like a number,”
reflecting a tendency for physicians to service as many bodies as possible in
the allotted time, often in order to maximize efficiency and profit.
Physicians with each of these tendencies, while overtly pursuing health, fail
to show the solidarity physicians owe to their patients.⁶
Perhaps a physician is concerned with his professional integrity, but that
concern is detached from an orientation toward the good of the patient’s
health. The doctor may be drawn to an ascetic, unsullied lifestyle as a
physician who practices with professional integrity and purity, but his desire
to remain above the fray also leads him to detach from human concern for
his patients. This condition may seem unusual, but describing it makes the
point that a physician’s concern for his integrity can become self-centered if
that concern is divorced from the patient’s health as the end of medicine and
if it is not accompanied by the virtue of solidarity. Further, it isn’t adequate
for a physician to participate only in the community of physicians; in such
cases a doctor’s allegiance to the guild becomes primary. Allegiance to
one’s guild can be important, but such allegiance contradicts itself when it
displaces the solidarity with patients to which the guild professes and on
which the guild’s practice depends.
(2) The second failing of physicians is that which most characterizes the
PSM: being concerned for the patient’s good while denying the possibility
of knowing what that good is and what concern for it requires. Such
concern reduces to providing patients with what they desire and
autonomously choose. In such an approach, there can be no solidarity, for
no actual common good exists between the physician and the patient. In
practice, many—perhaps even most—physicians and patients break through
the constraints of the PSM to form genuine communities with one another,
but in doing so they run against and expose the inadequacies of the PSM’s
logic. Ideas have consequences: if there is no genuine good, there is no
good in common; if patients and physicians have no good in common, no
genuine solidarity and community are created between them. The logic of
the PSM undermines the doctor-patient relationship.
This portrait of the doctor-patient relationship as a community, however,
raises a different worry: that the portrait fails to respect boundaries
appropriate to the kind of relationship that physicians and patients share.
Yes, physicians are concerned for and have solidarity with their patients as
whole persons, not as objects or as collections of parts, but surely the whole
person includes much that is not the doctor’s concern and perhaps none of
the doctor’s business. Indeed, on the Way of Medicine, the physician’s
concern is the patient’s health, not the entire array of goods that have a
place in the patient’s life.
We think a middle path exists between the detached posture that treats the
patient as an object with whom the physician has no solidarity and the
enmeshed mode that, in service to being holistic, makes it the physician’s
business to care about everything that matters to the patient. Patients are
living bodily beings, and so the physician who attends to a patient’s health
—a characteristic of the body as a whole—thereby attends to the patient as
a person, even if the physician focuses only on this one dimension of the
patient’s personal existence. The same is true in other social contexts.
Teachers’ concern for their students, for example, does not typically extend
to the students’ home lives, but good teachers nonetheless are concerned for
the good of their students as persons. (Think of how odd it would be for a
teacher to simply want there to be more knowledge in the world, and to
think of students as the objects in which this knowledge was to be realized.)
The challenge for physicians and for teachers is to be concerned in the right
way.
The right way displays the hallmarks of solidarity. Think, for example,
about the importance of listening and communicating in relations between
persons. Think also of the virtues that go with listening and communicating
well: honesty, tact, patience, and silence, as well as politeness, respect, and
humility. These virtues all manifest solidarity: goodwill toward another as a
person for whom one has a special care and concern. Such solidarity also
requires acknowledging and respecting the patient’s authority. The doctor is
concerned for the whole person but not by seeking to influence all aspects
of the person’s life. Rather, respecting the patient’s authority, the physician
enables the patient to make decisions in the domain of health that fit the
patient’s vocation as a whole person.
Because the physician ultimately cares for the patient, occasionally that care
cannot be confined merely to the good of health (a parallel statement can be
made regarding teachers and the good of knowledge). Sometimes
physicians can reasonably meet a patient’s request for prayer, marital
advice, or urgent assistance in some other domain. Physicians need
prudence in discerning when such actions complement the physician’s
vocational purpose—seeking the patient’s health—and when they might
interfere with or problematically distract from that purpose. The PSM,
interestingly, has no way of distinguishing between and ordering the two
kinds of actions because it does not distinguish actions oriented toward
health from actions oriented toward other aspects of patient well-being.⁷
Trust
Classically the professions respond to particular vulnerabilities that
individuals face; such vulnerabilities call for trust on the part of the
vulnerable and trustworthiness on the part of those caring for them.
Solidarity is so important for the practice of medicine because in order for
physicians to help patients, patients and physicians must be able to trust
each other.
Patients often seemingly have no choice but to rely on their physicians.
Patients do not control when and how they come under their physicians’
care, and often they lack the knowledge or wherewithal to evaluate whether
the physician is doing a good job. But trust and reliance are different. We
rely on something when we simply count on it, and sometimes we count on
something when we have no other choice in the matter. Moreover, reliance
does not require a personal relationship: you probably rely on your car, but
you don’t trust it. You don’t feel betrayed when it conks out, although you
might feel other unpleasant emotions.
Trust, by contrast, entails having faith in someone, having confidence that
the person will act toward you in ways governed by genuine concern.
Children trust their parents once they become old enough to understand the
nature of their parents’ relationship to them. When older children merely
rely on their parents—as providers of food, clothes, and shelter—that
evidences a breakdown in the child-parent relationship. Patients certainly
rely on doctors—on their technical skills, their showing up during clinic
hours, and their billing tools. Yet doctors can prove reliable in all of these
and other respects without ever caring about their patients as persons. Such
doctors cannot be called trustworthy, as they have no genuine community
with their patients. Absence of trust undermines the doctor-patient
relationship. The practice of medicine requires a relationship of solidarity,
at least according to the Way of Medicine.
CHAPTER FOUR
Autonomy and Authority
In our effort to identify a more adequate framework for medicine, we return
to the crucial concept of autonomy. The provider of services model (PSM),
in its opposition to the overly paternalistic bioethics of the first half of the
twentieth century, has made autonomy its cornerstone concept,
overemphasizing it, we believe, to a detrimental degree. That being said, the
Way of Medicine also values autonomy, properly understood. In the present
chapter, we aim to clarify what good autonomy is and how it relates to the
practice of medicine. We also introduce another concept, authority, that is
essential to understanding the Way of Medicine.
AUTONOMY
Medical practice is shaped by the philosophies of the age. If nothing else,
the philosophies of our age emphasize the importance of individuals’
directing their own authentic self-expression and self-development. This
cultural emphasis has profoundly shaped public expectations of medicine,
making autonomy the central feature of contemporary medical ethics.
Unfortunately, medical practitioners have come to misunderstand autonomy
along the way, and medical ethicists have come to overstate its importance
greatly, leading to distortions in contemporary medicine and medical ethics.
Contemporary medical ethics came to focus on autonomy in response to
what were obviously violations of autonomy, particularly cases in which
medical researchers and practitioners withheld or subjected patients to
interventions without the patients’ consent. The Tuskegee syphilis
experiments are among the most infamous of such cases. Apart from
infamous cases, however, physicians often failed to adequately inform
patients about their conditions and the courses of action available to them.
Physicians also failed at times to obtain consent from patients before
enacting the treatment that the physician deemed best. This pattern came to
be described as medical paternalism, by which physicians assume they
know what is best for patients and presume that they have the obligation or
right to act for that presumed best. As the Tuskegee experiments show,
assuming physicians’ benevolence leaves patients unprotected when
medical researchers are more interested in societal benefits than in benefits
to individual patients. Even when physicians genuinely care about their
patients, something important is missing if the patient does not have the
opportunity to understand and at least implicitly consent to the physician-
proposed treatment.
A move toward autonomy-based medical ethics sought to correct the errors
of medical paternalism, but it also dovetailed with intellectual currents that
date back to the origins of contemporary liberalism. These intellectual
currents hold that our social and political life should recognize and foster
people’s freedom, equality, and independence. How, people reasonably
asked, are freedom and independence upheld when researchers or
physicians act on patients without their knowledge or consent? Where is the
equality between patient and doctor when the doctor can decide on a course
of action unilaterally? Drawing on classical liberal sources such as
Immanuel Kant and John Stuart Mill, twentieth-century ethicists argued that
the virtues of liberal society could be realized in medicine only through the
practice of obtaining informed consent whenever a physician or researcher
proposed to do something with, to, or on a patient.¹
Misunderstandings about Autonomy
Twentieth-century ethicists understandably emphasized informed consent,
but on the heels of this emphasis two misunderstandings regarding
autonomy have come to distort medical practice.
Misunderstanding 1: An autonomous choice is a right choice. In one view,
autonomy is singularly important because what makes a choice right is the
autonomy itself. We call this the radical autonomy view. By “radical” we do
not mean that its advocates operate outside the political mainstream;
rather, we mean that in this view the exercise of autonomy itself
fundamentally (radical means “at root”) affects the nature of the choice,
making the choice right.
The radical autonomy view has its origins in the work of Immanuel Kant,
for whom autonomy was present only in a choice made in accordance with
the categorical imperative: act only according to that maxim whereby you
can at the same time will that it should become a universal law.² A will
acting in accordance with such a maxim, argued Kant, was not determined
by any incentive such as might be provided by a mere desire; that will was,
accordingly, free and autonomous.³
More recently, the idea that an autonomous choice is an ethical choice has
become detached from the categorical imperative and transformed into
something that Kant would not recognize but that some thinkers have
dubbed “expressive individualism.”⁴ According to expressive
individualism, the rightness of a choice is a function of its authenticity,⁵ a
conceptual cousin of autonomy. One is authentic if one is one’s own person
—that is, self-governing and autonomous. A famous expression of this view
is found in Supreme Court Justice Anthony Kennedy’s decision in Planned
Parenthood v. Casey, a case involving abortion rights. Kennedy wrote, “At
the heart of liberty is the right to define one’s own concept of existence, of
meaning, of the universe, and of the mystery of human life.”⁶
In Kantian ethical theory, respect for another person’s autonomy can lead
directly to an obligation to obtain that person’s consent before engaging in
any medical intervention. But as cultural assumptions about autonomy have
drifted further from Kant, the view that respect for autonomy requires
obtaining informed consent has been supplanted by the view that we owe
positive respect to any way in which others “define [their] own concept of
existence, of meaning, of the universe, and of the mystery of human life.”
Stephen Darwall has called this sort of respect “appraisal respect.”⁷ In the
domain of medicine, the radical autonomy view expects medical
practitioners not merely to tolerate autonomous choices with which they
may disagree; increasingly, this view expects physicians to honor and
facilitate such choices.
This expectation of radical autonomy, and the underlying influence of
expressive individualism, pop up around many of medicine’s most vexing
issues. For example, in the realm of death and dying, much of our culture,
including important parts of our medical culture, has moved from requiring
physicians to respect a dying patient’s refusal of further life-sustaining
interventions to the view that the dying patient has a positive right to a
physician’s assistance in dying. Brittany Maynard put it plainly in her
online manifesto: “I want to die on my own terms. . . . My question is: Who
has the right to tell me that I don’t deserve this choice?”⁸ Following Ms.
Maynard’s view, undergirded implicitly by expressive individualism,
doctors who care for patients like her must provide death, or the means to
death, if that is what the patient autonomously chooses.
For a second example, consider the emphasis on choice that pervades
discussions of abortion, contraception, and reproductive questions more
generally. As with dying, those who invoke the importance of autonomy
increasingly claim not merely that practitioners must abstain from
interfering with patients’ choices in reproductive matters but also that
practitioners must positively respect those choices and help patients carry
them out. In this way, medical practitioners’ objections to providing
abortion or contraception are overruled in favor of what a person has
autonomously chosen.
To take up a final issue receiving attention currently, consider the growing
movement for transgender rights and equality. We hold that all human
persons are equal and equally deserving of basic human rights, whether
they are trans- or cisgendered. But many in the transgender movement also
hold that an individual’s autonomous desire to change gender should be
normative for the medical profession. In some states practitioners are
legally prohibited from counseling practices that seek to help adolescents
sustain a gender identity that matches their biological sex.⁹ Medical
practitioners are increasingly expected to support and assist those wishing
to have their secondary sex characteristics changed through medical and
surgical interventions. We discuss the medicalization of gender identity and
expression at length in chapter 6.
In these areas and others, the radical autonomy view expects patient
autonomy to set the template for what physicians and other medical
professionals may, must, and must not do. This misconstrual of autonomy
and what it requires, however, undermines the practice of medicine and
proves inherently unstable. First, the radical autonomy view reduces the
medical practitioner to a kind of functionary whose job is to provide desired
services to the patient, regardless of the practitioner’s considered judgment
about the wisdom or morality of doing so. What matters is patient choice,
the central concern of the provider of services model (PSM). This reduction
contradicts the Way of Medicine’s understanding of medicine as a
profession in which practitioners are characterized both by a commitment to
the good of health for the patient and by a practical wisdom or clinical
expertise related to that good. Under the PSM, practitioners are
distinguished not by their wisdom but by technical skills that allow them to
accomplish what few others can, and perhaps also by participation in a
social contract according to which they may exercise those skills on others
if in service to these others’ authentic wishes. Lost here is any sense of the
physician’s calling to serve persons by seeking an authentic and objective
good for them.
The radical autonomy view similarly reduces the doctor-patient
relationship. In the Way of Medicine, doctor and patient work together to
understand, pursue, and achieve what is genuinely good for the patient.
Their relationship forms a community of solidarity and trust. The doctor
serves the patient, but not in a way disjoined from her own good; indeed, in
pursuing the patient’s good, the doctor achieves her own good as a doctor.
In contrast, if the physician must be in thrall to the patient’s desires and
choices even when those choices contradict the physician’s best judgment,
the physician loses the basis for thinking that the practice of medicine
coheres with a good life, and the patient loses the basis for trusting the
physician to act only for the patient’s good.
Moreover, the radical autonomy view proves inherently unstable, for in
granting radical autonomy rights to patients, the view unjustifiably
eliminates physicians’ autonomy. Consider the physician who
conscientiously objects to participating in assisted suicide, believing that
the practice contradicts the physician’s profession to heal and never to
harm. In the face of a patient’s autonomous demand, the radical autonomy
view expects the physician to set her convictions aside or leave the medical
profession altogether.¹⁰ But how does this expectation respect the autonomy
of the physician? What warrants such an incursion on the physician’s
capacity for self-government? The radical autonomy position has no good
answer.
Misunderstanding 2: Autonomy is the greatest human good. Aside from the
claim that an autonomous choice by its nature is a correct choice, a related
but different view treats autonomy as the greatest of the human goods—the
one that is singularly important for making our lives go well. We call this
the autonomy-first view.
Those who emphasize autonomy recognize correctly that autonomy and
human flourishing are connected, but the autonomy-first view
misunderstands the connection. Unlike goods such as health, knowledge,
friendship, or religion, which in themselves make a person better off,
autonomy makes a person better off only insofar as it is directed toward
instances of these and other basic goods.¹¹ Put differently, an autonomous
choice is a good choice only when it is a choice for a good; this can be seen
whenever someone makes a self-destructive choice.
Indeed, even a choice for a good can go wrong if the choice is not guided
fully by reason. For example, a person who pursues her own health (a
genuine good) but does so in a way that disregards foreseeable downstream
effects on others (thereby failing to be fair to those others) not only makes a
bad choice but also contradicts her own good insofar as her flourishing
depends on acting with integrity.
The Importance of Autonomy
Still, autonomy is important to a good and upright life. In the most intuitive
sense, autonomy involves a person’s freedom to be self-governing. This
intuitive understanding reflects the etymology of the word: nomos is Greek
for “law,” and auto means “self.” So an autonomous person is in some way
a law unto himself, or self-governing.
But why should people care about being self-governing—deciding for
themselves how to live and act? Recall that a good life is lived in pursuit of
basic goods, individually and socially. Moreover, a good life is shaped by
concern for that life as a whole. We suggested understanding this concern in
the sense of a rational life plan, and even more adequately in the sense of
vocation: a life of pursuing basic goods for human persons to which one is
called and in which one makes good use of one’s talents, interests,
sympathies, and opportunities.
Such a life clearly requires commitments to goods as well as persons, for at
least two reasons. First, some goods—such as friendship, marriage, and
religion—are fully realized only by persons who have made commitments,
such as to a friend, a spouse, or God. Moreover, these commitments are real
only if they are a person’s own commitments, if she has really made them
for herself. This insight, central to arguments for religious liberty, brings
into view an initial reason for the importance of autonomy: some human
goods cannot be realized at all unless individuals are free to make and
follow through on their own commitments.
A flourishing life requires commitments for a second reason that bears even
on those goods that can be realized without commitment. Consider, for
example, the good of human life. Every baby participates in this good
despite not yet making any commitments. But many babies could not enjoy
this good were it not for commitments many other people make: doctors
and nurses to care for them, researchers who discover new ways of
maintaining and fostering human life under adverse circumstances, and
family members on whose love and concern the babies depend from the
outset of their existence. Commitments help human beings in community
realize goods to a greater degree, in themselves and one another.
Such commitments are often social: researchers in any field collaborate and
engage with predecessors and successors in pursuing the knowledge they
seek. They inherit a body of knowledge and skill with which to work, and
they pass new and improved knowledge and skill to future generations. The
Way of Medicine itself has built up over centuries through this kind of
collaboration.
These commitments, in turn, go better if they are the agents’ own
commitments. Imagine a world in which people are chosen to be doctors
and have little say in the matter. In such a world, doctors’ flourishing would
be stunted by their failure to do what they are called to do, and patients
would suffer insofar as their physicians fail to be intrinsically motivated for
and invested in their work.
Moreover, not everyone is cut out to be a physician, just as not everyone is
meant to be a philosopher. Judiciously discerning whether one should
commit to one line of work or the other (or both or neither) seems to require
taking honest account of one’s abilities, dispositions, and opportunities.
And who is best situated to take all of these into account if not the person
himself, the one who must eventually make the commitment? Again, we
need autonomy to deliberate practically about what commitments we should
make.
What is true in making commitments is mirrored in their upshot: the
obligations that commitments generate. Marital commitments bring marital
obligations. The commitment to practice surgery brings obligations for the
surgeon. An individual who is best situated to know to what she has
committed is likewise best situated to know what obligations follow from
that commitment. Individuals aren’t free, of course, to make up the
obligations that follow from their commitments. A married person cannot
reasonably say, “Well, for me, the marriage commitment includes openness
to other sexual partners.” A surgeon cannot reasonably say, “Well, for me, a
commitment to surgery means I get to recommend the surgery for which I
get paid the most.” Our argument does imply, however, that married persons
and surgeons both need the space to make judgments about what their
vocational commitments require. Does my marriage commitment mean
quitting the job I enjoy so that my wife can pursue the job for which she
seems particularly well suited? Does my commitment to surgery mean
operating on a patient who is dying even though the odds of success are
small? Giving people the space to engage in such discernment and to act on
their judgments seems reasonable—more reasonable than deciding for
another person what she must do.
For all of these reasons, autonomy, properly understood, contributes a great
deal to human flourishing,¹² and physicians go astray if they treat it as
unimportant.
AUTHORITY
By deploying the concept of authority, practitioners and ethicists can affirm
what is true and important about autonomy while avoiding the false
implications of the radical autonomy and autonomy-first views.
Medical decisions are made in a social space that includes multiple parties:
the patient, the patient’s family and friends, the medical professionals
involved, and others, such as institutional decision-makers, insurance
providers, and clergy. All decisions involving more than one party have a
similar problem: given that the various persons involved have different
reasons for acting, how do they reach a final decision?
John Finnis has pointed out that there are only two possible ways:
unanimity or authority.¹³ No further options are available, for unless there is
unanimity, every way of making a decision involves some form of
authority. Even a vote in which the majority wins substitutes the authority
of the majority for the decision of all.
At least two different forms of authority at work in the medical context
must be distinguished in order to respect their nature and limits. The doctor
typically has the authority of expertise. She knows what health is and what
interventions will preserve or restore health, as well as in what ways and
with what costs and side effects. She also may have the authority of
expertise with regard to what the healthiest outcome would be. Sometimes
there is clearly such an outcome, and the doctor will speak authoritatively
about that outcome to the patient.
But the authority of expertise has its limits. The physician must recognize
that the best health outcome (the one most congruent with the patient’s
medical best interests) is not always the best outcome overall and that often
no best health outcome exists anyway. This second, more limited claim
implies the first, so let’s consider it up front.
In his essay “Searching for Moral Certainty in Medicine,” Mark Siegler
writes of a professional dancer with asthma.¹⁴ When she begins to seek
treatment, the dancer first finds a doctor whose treatment plan allows her to
dance but also allows her to suffer some breathing problems, and then a
doctor who refuses to offer any treatment plan that does not maximally
alleviate her impaired breathing, which requires that she not dance. What
seems best to the first doctor—and, importantly, to the patient—is that the
dancer be able to dance, even if the treatment that secures that outcome
carries risks of impaired breathing. What seems best to the second doctor is
that the dancer be able to breathe freely, even though the side effects of
effective treatment will leave her no longer able to dance. Is one of these
doctors obviously right about the best health outcome? On the contrary: we
submit that no doctor can say for sure which outcome is the more healthy.
Each outcome preserves certain aspects of the dancer’s health while leaving
other aspects untouched or even impaired.
Moving now to the stronger claim, no doctor can say how important these
aspects of health should be relative to the other goods that the patient might
seek given her vocation. Being able to dance and being able to breathe seem
genuinely incommensurable. So do the risk of death brought on by
incompletely controlled asthma and the certainty of not being able to dance
brought on by effective asthma medications. The overall outcomes—the
health-related outcomes plus the various other benefits and burdens
incurred in pursuing those outcomes—are likewise incommensurable. No
authority of expertise can discern the best course of action for this dancer in
her particular context.
We need a second form of authority. Consider again the claim that even if
we focus just on health considerations, sometimes there is no best medical
course of action. All medical interventions offer not only benefits but also
burdens—side effects that are not chosen but that inevitably accompany the
benefits promised. Sometimes, different interventions present very different
health benefits, and to pursue one set of benefits often means forgoing the
other. In such cases, not achieving one set of benefits is a side effect of
seeking to achieve another set. Because the options are incommensurable,
the patient may not have the option of choosing a best health-related
outcome.
As the dancer’s story indicates, health outcomes are not the only ones
implicated in medical decisions: medical decisions have consequences for
other goods, basic and instrumental. One intervention might keep a patient
alive longer but also keep him from fulfilling certain responsibilities. For
example, a patient might be offered a special lung transplant that is
available only if the patient relocates across the country, away from all
family and friends. The patient must factor in such burdens in order to make
a wise choice about pursuing the intervention. More generally, an
intervention might involve procedures repugnant or immensely painful to
the patient, or the intervention might be time-consuming and expensive. In
such cases, even where a best possible health outcome seems apparent, the
patient still faces a decision about whether, all things considered, pursuing
the best health outcome makes sense given the burdens that will follow.
The question is, Who should decide and why? Our answer here plays an
important role throughout the rest of this book. The provider of services
model (PSM) of medicine, with its singular emphasis on autonomy, sees the
answer as straightforward: the patient should decide. The patient should
decide either because the right decision is de facto the decision the patient
makes (radical autonomy) or because freedom to decide is the most
important aspect of human flourishing (autonomy-first). We agree that the
patient should decide, but for different reasons. From the perspective of the
Way of Medicine, the patient should decide because the patient possesses
the authority to decide.
Let’s step back. Someone or some group must have authority to make that
decision. The decision-makers should take into account the various benefits
and burdens that follow from different courses of action, but those benefits
and burdens are often incommensurable. What standards, then, can be
brought to bear to discern a reasonable medical decision?¹⁵ One obvious
standard is the patient’s health. What can be done that offers a reasonable
hope of benefiting the patient’s health? The physician, as we suggested
above, has the authority of expertise regarding this standard, and therefore
the physician has authority with respect to what medical interventions the
physician will offer. This genuine form of authority should not be abused or
disrespected—not by the physician, who might try to extend this authority
beyond its reasonable limits, and not by the patient, who might demand
from the physician something the physician believes does not offer
reasonable hope of benefiting the patient’s health. The physician’s authority,
which derives from his vocational commitments, thus establishes an initial
framework for the choices that the patient must make.
But once courses of action that the physician believes reasonably pursue the
patient’s health are in view, what standard can be brought to bear to discern
the best overall option? This standard should be the patient’s vocation.
Think again of Siegler’s dancer. The dancer clearly has shaped and will
continue to shape her life in terms of those basic goods to which she has
made vocational commitments. She pursues her art, and the goods of
aesthetic experience and work, with devotion and craft. Perhaps, as for
many persons, these commitments are ordered and integrated by other
commitments, such as marital or religious commitments. All of these
vocational commitments provide a framework within which the dancer
reasonably considers the various burdens and benefits her physician offers,
and these burdens and benefits together determine what decisions are
reasonable for the dancer in this situation.
Note how differently thinking about one’s vocation works compared to a
bare appeal to autonomy. In the Way of Medicine, the patient can make an
apparently autonomous choice and still go wrong. She must be courageous,
not allowing unreasonable fear to sway her; she must be prudent, not
allowing unreflective desires to lead her away from a reasoned assessment;
and she must be just, taking account of her responsibilities and the way that
different choices will impact her ability to fulfill her obligations. If our
dancer has a small child, for example, it might be both unjust and imprudent
for her to pursue dance at the cost of a higher risk of dying. Alternatively, if
the risk of death is very low even with suboptimal management of her
asthma, she might be cowardly to give up her work and art for the sake of
reducing a risk that is already so small.
The patient can go wrong in assessing what her vocational commitments
require, but still she has the best epistemic access to what those
commitments are and what they imply for this medical decision. The
dancer’s personal vocation provides the necessary standard for her to
reasonably weigh the various incommensurable benefits and burdens of
each option and decide which to pursue.¹⁶ She might need advice from
someone else to help her consider her options, but even such advice serves
primarily to help her take the measure of her own vocation and its
implications for her life.
The concept of authority has another feature that autonomy lacks. It helps
medical practitioners discern how to respond when a patient chooses a
course of action that the physician believes is foolish or even unethical. As
everyone knows, authority is no guarantee of its own wise exercise, yet lack
of wisdom does not vitiate legitimate authority. Sometimes physicians have
good reasons to follow the courses of action that patients choose, even
when the physicians are convinced that their patients should have made
better choices.
In such cases a physician might reason with a patient and attempt to
persuade him that he is exercising his authority in a less than fully
reasonable way. Quill and Brody, in a critique of the PSM’s tendency to set
physicians at odds with their patients, argue that such efforts by physicians
to counsel and persuade patients, rather than violating autonomy, actually
support “enhanced autonomy.”¹⁷ Such efforts do so by giving patients more
information to consider in making their decisions. Quill and Brody’s
critique shines light on deficiencies in autonomy as popularly understood,
and we believe their critique would be expressed more adequately in terms
of patient authority. After all, if an autonomous choice is self-ratifying, a
physician has no reason to argue with or even give more information to
someone who has made an autonomous decision. By contrast, prudent
exercise of authority often requires consultation with others. Parents have
authority over their children, but to exercise that authority wisely they often
need to take account of their children’s judgments and preferences.
Similarly, patients have authority to decide which medical proposals to
follow, but to exercise that authority wisely they often need to take account
of their physicians’ recommendations as well as the input of family and
friends and even other healthcare practitioners.
Unlike in the case of autonomy, the concept of authority carries with it
limits to that authority. Everyone knows that when political authority is
exceeded, the governed have reason to resist illegitimate directives. For
example, we commend US Army physicians who have refused to
participate in waterboarding and other forms of torture. Their refusals have
been justified insofar as orders to participate in torture exceeded the
legitimate authority of the ones ordering. Note that we would not commend
the same physicians for refusing to obey an order to take care of those
prisoners’ health needs or even for refusing an order to march into danger
with other soldiers, because such orders are within the scope of the
legitimate authority of military commanders. Those in power always exceed
the scope of their legitimate authority when they pressure the governed to
do something that is always and everywhere wrong.
This point about the limits of authority proves important in the medical
context. Recall that one complaint against the PSM, with its overemphasis
on autonomy, is that it reduces doctors to functionaries who must provide
whatever a patient requests. The motto of the PSM is not simply that
patients decide (choose), but also that physicians provide (obey). In
contrast, focusing on authority makes it clear that sometimes patients will
decide, autonomously, that they want something they do not have the
authority to demand. This situation arises whenever patients demand that
physicians act in ways that contradict physicians’ professional
commitments.
According to the Way of Medicine, a doctor’s professional commitments
and expertise give her the authority to decide what she is willing to do
within the framework set by her own vocation as a healer. The patient’s
authority is limited to requesting and then consenting to or rejecting the
options made available by the doctor; it does not extend to positive
entitlements justified by autonomous choices. Thus, if a patient requests
assistance in dying from a physician who, because of moral—including
professional—objections, does not offer that option, the patient is well
within her authority to seek another physician; but she is well outside the
scope of her authority to insist that her doctor provide assistance in dying in
the face of the doctor’s principled objections.
CONCLUSION
Autonomy matters for human flourishing and to the Way of Medicine. No
doubt in the past many physicians claimed a greater scope of authority than
was warranted. “The physician decides, the patient obeys” is not an
appropriate ethos for the doctor-patient relationship. Respect for autonomy,
however, does not mean embracing the radical autonomy and autonomy-
first views that undergird the PSM. “The patient chooses, the physician
provides” likewise fails as an ethos for the doctor-patient relationship. The
Way of Medicine respects the space practitioners and patients need to
exercise autonomy, but it recognizes that they have reasonable grounds to
do so only within the scope of their proper authority.
CHAPTER FIVE
The Rule of Double Effect
In this chapter we address a final foundational issue before turning to
explore the difference the Way of Medicine makes with respect to a number
of ethically disputed clinical practices. Our purpose here is to articulate and
defend the so-called rule of double effect. This rule plays an essential role
in the Way of Medicine. Indeed, as we will show, abandoning the rule of
double effect leads directly toward the provider of services model (PSM).
Our framework is robustly pluralistic about basic goods and about the
diverse ways that good lives can pursue these many goods. We have argued,
however, that some actions are never permissible for anyone. Moral
absolutes typically flow from the general norm: basic goods are never to be
directly (that is, intentionally) damaged or destroyed, whether out of
hostility or for the sake of some further good. That norm makes sense,
recall, because the basic goods are always good; therefore, hostility toward
them is always unreasonable. Basic goods are also incommensurable; it can
never be reasonable to destroy one good as a means to achieve a greater
good.
The Way of Medicine internalizes this requirement of practical reason,
particularly in its understanding of the physician’s central vocational norm:
never directly (that is, intentionally—as end or means) damage or destroy a
patient’s health and life. This norm starkly distinguishes the Way of
Medicine from the PSM, and it has obvious implications where issues such
as abortion and euthanasia are concerned, as we discuss in later chapters.
But the norm also raises a question: why are moral absolutes, including
those of the Way of Medicine, framed in terms of intention?
To explore this question, consider the options that patients typically face:
one set of health benefits is linked to one set of health burdens, and another
set of health benefits is linked to a different set of health burdens. The
options exclude one another. For example, a patient who chooses
chemotherapy may have prospects of longer life but will also face
significant burdens, including nausea, fatigue, mouth sores, and anemia, all
of which diminish the patient’s health. Similarly, a patient who declines
chemotherapy can expect to avoid these burdens but faces the prospect of
dying sooner, a result obviously contrary to the good of life and health.
Patients typically cannot avoid making choices that have negative
consequences for their health. Insofar as that is true, medicine’s chief norm
cannot be that physicians must avoid anything that causes damage or
destruction to the patient’s health. In many situations, physicians cannot
possibly comply with such a norm.
Note, however, that in the situation just described, the patient’s relationship
to the benefits sought or the burdens avoided differs from the patient’s
relationship to the benefits lost or burdens accepted. A patient who chooses
chemotherapy selects a set of health-related benefits and accepts a set of
health-related burdens as side effects. Such choices clearly differ from
intentionally choosing to damage one’s health or choosing to die.
Although a patient cannot always avoid choices that will result in damage
to her health, she can, always and everywhere, avoid choosing to damage or
destroy her health. She can avoid the latter choices even if in no other way
than by simply doing nothing. For even if she suffers injury to her health by
doing nothing, the injury is, again, a side effect of her (in)action. Thus,
moral absolutes speak to what one must never do intentionally. This focus
on intention is important to just warfare—where injury to civilians may be
accepted under some circumstances, but never intended. It is also important
to the risking of one’s life in pursuit of good ends—for example, in fighting
forest fires or seeking to rescue someone drowning, and, of course, to the
practice of medicine, which inescapably involves accepting the adverse side
effects of treatments. Thus, the norm is formulated: never intend damage or
destruction to a basic good.
ASSESSING SIDE EFFECTS
The rule of double effect can be put quite simply: sometimes an effect that
one should never intend can be accepted as a side effect as long as there are
proportionate reasons for doing so. (More traditional formulations of the
rule are more complex; we address them below when discussing intention.)
What is proportionate is one of the most important practical questions in
medicine. The answer provides the standard by which to judge many of the
most difficult questions physicians and patients face: whether to withdraw
or remove treatment when death is not intended but will follow as a
consequence, when the death of an unborn child can be accepted as a
consequence of actions taken to preserve the mother’s life, and many more.
Here we provide two general answers to the question about proportionate
reason, and we amplify those answers in context in subsequent chapters.
Before saying what a proportionate reason is, however, we should say what
it is not. It is not a reason that follows from weighing different goods to find
if the “greatest good” will be achieved as a result of the proposed action. If
it were possible to take the goods and harms of a proposed clinical
intervention and identify which proportion will bring about the greatest
good, consequentialism would seem to be a reasonable response. We would
want to maximize goods. But if, as we argue, such maximization is not
possible, “proportionate reason” cannot refer simply to the balance of good
over bad in an option.
Rather, proportionate reason must be understood by considering the goods
and harms of an option against a reasonable standard. Two standards are of
special importance: fairness and vocation.¹
Fairness
Recall that emotions and preferences, if not integrated by reason, can distort
our choices and blind us to the fact that the basic goods are good for all
human beings. Thus, a student might lie on his medical school application,
knowing that by doing so he is improving his chances of being selected
while hurting the chances of other, more highly qualified, applicants. He
might think, “I do not know those other applicants, and anyway I need to
look out for me.” Such thinking, like his act of lying, is manifestly unfair, as
the Golden Rule suggests. If six months later we told the student that he did
not get into the school of his choice because another student lied on her
application, this student would resent the other student’s lie.
In this example the effect of one student’s lie on another applicant is a side
effect. The student does not lie in order to hurt the other’s chances of
admission. He lies in order to gain admission for himself. He probably
recognizes that his action will disadvantage someone else, but that is not his
purpose. What makes his action recognizably unfair is that he seeks benefits
to which there are burdens attached, and he knowingly takes the benefits
entirely for himself while unjustifiably allowing the burdens to fall entirely
on someone else. This unfairness is a separate wrong from the wrong of
lying.
Similarly, in the case of the Tuskegee experiments, in all likelihood the
researchers did not intend the negative effects caused by not treating the
subjects in their study. Indeed, they may have rationalized their actions by
insisting that, unlike the researchers running some Nazi experiments, they
did not directly make their subjects sick. Nevertheless, we can see, and the
researchers should have seen, that in not treating their subjects, the
researchers sought the benefits of their scientific research and medical
knowledge for themselves and others while allowing the attached burdens
of the research—sickness and death—to fall entirely on those subjects. The
Tuskegee study was therefore manifestly unfair.
Principlists would say that the Tuskegee experiments were failures of
justice. Indeed they were, precisely because they were unfair. In general,
when principlists and others have drawn attention to abuses of vulnerable
populations as subjects of human research, they have pointed out that it is
manifestly unfair (and therefore unjust) to take advantage of such
populations in order to pursue benefits that those subjects likely will never
see while imposing burdens that the eventual beneficiaries will never
experience.
Fairness thus provides one standard for judging whether there is a
proportionate reason to accept negative side effects. The benefits of an
action might be quite significant and the burdens relatively minor, but the
action may still fail the test of proportionality precisely because the benefits
are distributed to one person or group and the burdens to another. Such an
action is unfair unless the person or group receiving all or most of the
burdens consents to do so, perhaps out of charity for others whom they wish
to benefit, as we see in the case of living organ donors.
As the Tuskegee case illustrates, the standard of fairness in accepting side
effects is especially important for the ethical conduct of human subjects
research. (Although this book does not focus on it, the norms of the Way of
Medicine clearly bear on human subjects research.) Fairness is important
for the ethical practice of clinical medicine as well. Physicians can unfairly
benefit some patients at the expense of others, can unfairly seek resources
for their patients at the expense of their colleagues’ patients, or can unfairly
privilege their own good over their patients’ good. Physicians who
begrudge the time they give to a patient because of prejudice, distaste, or
dislike for the patient are being unfair, even if they intend no harm.
Fairness does not prohibit physicians from privileging their patients in
certain ways. Physicians’ commitments to their patients release them from
some obligations toward others. In attending to their particular patients,
physicians do not attend to those who are not their patients. Indeed, medical
practitioners could genuinely care for patients only by privileging their
patients in this way. Therefore, this kind of privileging seems to meet the
standard of fairness even if, at a given moment, someone is being
disadvantaged by it—for example, when a physician sees regularly
scheduled patients before patients who arrive without appointments. This
kind of privileging seems consistent with the Golden Rule.
Vocation
As we have seen, individuals have good reasons to bring order into their
lives by making commitments that orient them toward some goods rather
than others. Because human goods are typically sought and obtained in
cooperation with other persons, an individual must make commitments to
particular persons. Because the goods cannot be sought all at once or all in
the same measure, the individual must give priority to some commitments
over others.²
The individual’s vocation names the overall shape of his life—the order
brought about by his most important commitments. As we have seen,
vocations also generate obligations that require further action. So, for
example, a person whose vocation includes a marriage commitment will
typically eventually have children, and when that happens his vocational
obligations expand to encompass care and concern not just for his spouse
but for his children also.
We have made use of this account of vocation to argue for patient authority
in healthcare decision-making. Patients have the authority to accept or
refuse proposed interventions because they are in the best position to judge
whether the benefits and burdens being offered to them are proportionate
for them in light of their particular vocational commitments. The patient’s
vocation provides the standard against which proportionality is judged.
We can see how vocation bears as much on our assessment of side effects as
it does on our assessment of what is chosen. Patients make healthcare
decisions with benefits and burdens in view, and typically the consequences
of their decisions ramify beyond the scope of health. On the one hand, a
patient may choose an intervention in hopes of staying alive to spend more
time with his family, but as a consequence of the intervention he may
experience discomfort, insomnia, and irritability that make it hard for him
to be present to his family, do his work, or pray. On the other hand, the
patient may choose to decline treatment to avoid the associated burdens,
knowing that, as a consequence, he is likely to cut short the time he has to
be with his family or engage in other worthy activities. Either decision
results in a range of negative side effects, and the patient must judge
whether the negative effects to be accepted are proportionate to the goods to
be pursued. Vocation provides the standard for that judgment.
DETERMINING WHAT IS INTENDED AND WHAT IS A SIDE EFFECT
Now we return to an overarching question: on what grounds do we
discriminate between what is intended and what is merely a side effect?
All action aims at some good. More precisely, all action aims at some state
of affairs in which one expects to realize a good. Consider the request for
antibiotics by Abe, whom we met in chapter 3. He did not wish merely to
possess antibiotics, nor even merely to ingest them. He aimed at a state of
affairs in which, the antibiotics having done their work, his health would be
restored. So we may say that Abe had a goal or end in mind, and that he
hoped to realize the basic good of health in achieving that goal.
To reach this end, of course, Abe had to avail himself of means to that end.
He needed a plan, as is true of most of our pursuits of ends. Abe wanted to
be healthy; in order to achieve that, he aimed first to take antibiotics; in
order to take antibiotics, he first had to obtain a prescription; in order to
obtain a prescription, he first had to see a physician; and so on. Put
differently, Abe saw a physician in order to receive a prescription, in order
to obtain antibiotics, in order to ingest the antibiotics, in order to restore his
health. In thinking about Abe and each step in this series of actions, we
could describe his thinking and his choosing in terms of his plan or proposal
for action.
Abe might have considered other proposals; indeed, his physician
encouraged him to do so. In the physician’s judgment, antibiotics were not a
sound means toward health; rest and a tincture of time would be more
conducive to health. But at the end of the day, Abe made a choice, adopting
one proposal rather than another. The proposal included the end sought—in
his case, that state of affairs in which his respiratory infection was healed—
and the means to be pursued toward that end. All of this made up Abe’s
proposal for action, and so all of it was part of Abe’s intention.
In contrast, whatever was not part of this proposal—not, that is, either the
end Abe sought or the means he chose to achieve that end—can be
described as a side effect; it was not part of Abe’s intention. Perhaps Abe
knew that antibiotics typically upset his stomach and gave him diarrhea. He
was not terribly happy about that fact, but he went about seeking and taking
the antibiotics anyway. He foresaw that he would feel queasy and have
diarrhea for several days, but neither of these consequences was part of his
proposal; neither was intended. Although foreseen (more on that below), an
upset stomach and diarrhea were neither his goals nor the means he chose to
achieve his goal. Falling outside the scope of his proposal, these bad
consequences were side effects only.
Even though they were side effects, Abe still bore responsibility for them.
He could have chosen a different plan, such as the one his physician
recommended, and avoided these side effects altogether. Insofar as Abe was
able to choose between different proposals for action, he was responsible
for what he accepted as side effects. This is why it was necessary to identify
standards—fairness and vocation—by which Abe and others could judge
whether there was a proportionate reason for him to accept a particular set
of side effects in a particular situation. If we supposed that Abe would in
fact benefit from antibiotics and that the digestive issues would not
seriously incapacitate him, from the point of vocation, taking antibiotics
seems reasonable. But insofar as Abe’s expectation of benefit decreased
(e.g., as his physician explained that his infection was probably caused by a
virus), and his expectation of burdens increased (e.g., if he learned that he
was prone to more problematic forms of antibiotics-associated diarrhea),
Abe’s reasons for accepting these side effects diminished. If they
diminished enough, Abe should not have chosen to take antibiotics, even if
his doctor was willing to prescribe them. In addition, the doctor in this case
had her own decisions to make and her own judgments about
proportionality. The doctor had to judge whether the health benefits to be
obtained by writing the prescription were proportionate to the side effects of
doing so, and she had to consider whether it was unfair to other patients to
contribute to antibiotic resistance in the community while pursuing only
minor expected benefits for her patient.
Let’s return to the question of what Abe intended and a matter of some
controversy among philosophers of human action. We have claimed that
Abe’s intention encompassed all that was included in his proposal or plan—
his end as well as all the means he adopted to bring about that end.³ This
claim is controversial insofar as it identifies what was intended from the
agent’s perspective or point of view. What did Abe seek to obtain, and what
means did he choose to bring that about? Abe could choose only by his own
lights, but many thinkers, who agree about the importance of intention and
the rule of double effect, think that the agent’s perspective is too subjective.
Motivated in part by some hard cases, they are inclined to argue that one
must take a more objective view and that, in some cases, doing so will lead
to different conclusions about what Abe chose and whether he chose rightly.
What hard cases do they have in mind, and how do those cases bear on how
we think about intention? The body of writing about intention is enormous,
but here we focus on a case famously presented by philosopher Philippa
Foot. Foot described a case involving cave explorers trapped by a landslide
that had left one of their number blocking the only way out of the cave.
Water in the cave was rising fast, and the only way to move the man and the
rocks that were pinning him was to use a single stick of dynamite to blow
open a hole through which the explorers could escape—all the explorers
except, of course, the one who was stuck, whom the explosion would kill.
Would it be homicide to blow open the hole? Would those who blew open
the hole necessarily intend the man’s death? By our account, as described
above, it does not seem that the explorers’ proposal included the man’s
death. Their end was to save their lives. The means they chose included
blowing open a hole in order to escape. On our account of their intention,
the explorers would not be guilty of intentionally killing the man stuck in
the hole. (Whether it would be permissible to accept his death as a side
effect is a separate question, which would clearly require a consideration of
fairness and vocation.⁴)
But many find this conclusion appalling. Surely one cannot blow a hole
open by setting off a stick of dynamite right next to a living human being
and not intend that person’s death! The action of setting off the dynamite
and causing the death of the trapped explorer seems, as philosophers say,
“too close.” Thus, on some theorists’ account, if the bad effect is too close
to the action, it should be considered part of what is intended, even if the
bad effect is not part of the agents’ proposal. The challenge in such
accounts is not only to distinguish that which is part of a person’s proposal
from that which is not, but also to discern whether bad effects are
sufficiently close to the action to be considered part of what is intended,
thus making the action unreasonable.
One of the authors of this book has addressed the problem of closeness at
great length elsewhere,⁵ and we do not propose to wade further into that
topic here. But we mention these different accounts of intention here
because they return in chapter 7 when we discuss some disputed questions
related to the beginning of life.
ARTICULATING THE RULE OF DOUBLE EFFECT
We are now in a position to compare our formulation of the rule of double
effect with the more common and somewhat more complicated
formulations.
Above we presented the rule as follows: sometimes an effect that one
should never intend can be accepted as a side effect as long as there are
proportionate reasons for doing so. This formulation is relatively simple,
and it leads to a relatively simple way of applying the rule: only intend (i.e.,
will or choose) the good, and only accept the bad side effects of an action
when there are proportionate reasons for doing so (with proportionality
judged against the standards of fairness and vocation).
A more traditional formulation of the rule is somewhat more complicated.
According to that formulation, one may accept the bad effects of an action
if the following four conditions are met:
1. The act is good in itself (sometimes stated as the act is not intrinsically
wrong).
2. The bad effect is not intended.
3. The good effect is not achieved by means of the bad effect.
4. There is proportionate reason for accepting the bad effect.⁶
We prefer our simpler formulation, because we believe it encompasses
these four conditions. Only intend the good encompasses conditions 1
through 3. An action that intends only the good is good in itself. Because,
on our account, one’s intention includes both the end one seeks and the
means one chooses to bring about that end, conditions 2 and 3 are
redundant and can be stated simply as never intend the bad (the logical
corollary of only intend the good). Finally, our formulation includes the
requirement of proportionality (condition 4).
RECOGNIZING THE CLINICAL IMPORTANCE OF THE RULE OF
DOUBLE EFFECT
We conclude this chapter by pointing to the pervasive role that the rule of
double effect plays in medicine and medical ethics. Physicians lean on the
rule of double effect in their everyday reasoning about whether the adverse
side effects (the language physicians have long used) of a treatment should
be accepted in light of the benefits that the treatment promises. Physicians
cannot possibly honor the ancient medical commitment to do no harm
except by either doing nothing, and so failing to be physicians, or by
deploying the rule of double effect—intending only the good to be brought
about by an intervention and accepting the bad side effects only when there
is proportionate reason to do so. Physicians thus tacitly deploy the rule of
double effect whether or not they explicitly embrace it or the Way of
Medicine. Therefore, we might say that those who critique the rule of
double effect find themselves critiquing their own everyday clinical
practices.
The rule plays a more visible and equally foundational role when we turn
from every-day, uncontroversial practices to ethically controversial
interventions. Without the rule, one cannot, in many cases, respect all
persons by not violating their goods—goods that moral absolutes protect—
and still act to preserve and restore the health of one’s patients. Application
of the rule of double effect is essential, for example, in showing how an
intervention to save the life of a pregnant woman need not violate the norm
against intentional killing, even when the intervention will result in the
death of an unborn human person. The rule is equally essential for
understanding the difference between the practices of withholding or
withdrawing medical treatment and the practices of assisted suicide and
euthanasia.
Finally, the rule of double effect plays a critical role in the question of
cooperation, a central question wherever physicians are pressured to act
against their conscience. Medical practitioners cooperate in unethical
practices whenever they do something that makes it easier for another
person to do something bad. For example, suppose a patient asks for a
referral to an unscrupulous pain physician because the patient intends to get
opioid medications in order to abuse them. If the practitioner intends to
make the bad action easier to take—that is, makes the referral so that the
patient will be able to abuse opioid medications—the practitioner formally
cooperates, and formal cooperation is always unethical; it is always wrong
to intend what is bad. But if the practitioner does not intend to make the bad
action easier, the physician only materially cooperates, and the question
then becomes, Is there a proportionate reason to accept the unintended bad
as a side effect? So put, the question of cooperation clearly requires
application of the rule of double effect.
CONCLUSION
The rule of double effect plays a pervasive and foundational role in the Way
of Medicine. The rule undergirds physicians’ routine practices of assessing
side effects, and it protects them from violating the moral commitments that
have guided physicians for centuries in the Way of Medicine. Therefore, we
encourage the reader to be wary of those who dismiss the rule because it
was first articulated formally in a religious community (Roman Catholic, to
be precise) or because intentions are often hard to judge from the vantage
point of a third party (they are indeed sometimes hard to judge, but that
does not make intentions less important) or because the rule seems to limit
the scope of a patient’s right to self-determination (it does, which is why
medicine requires the concept of authority).⁷ The profession of medicine
detaches from the rule of double effect to its peril.
CHAPTER SIX
Sexuality and Reproduction
The clinical terrain involving sexuality and reproduction includes an
expansive array of ethically controversial topics. With respect to sexuality,
these topics range from gender and sex transition to sexual performance to
the prevention of pregnancy. With respect to reproduction, they range from
genetic counseling and assisted reproductive technologies prior to
pregnancy to prenatal genetic diagnosis and abortion during pregnancy to
resuscitation of neonates and surgical sterilization after pregnancy.
In no other domain do the provider of services model (PSM) and the Way of
Medicine diverge more starkly. According to the Way of Medicine, the
constitutive end or purpose of medicine is the patient’s health. No one
should intentionally damage or destroy basic goods, and health and other
goods should be pursued by physicians only in ways that are fair to others
and that respect one’s vocational commitments. The domain of sexuality
and reproduction gives a clear picture of what the practice of medicine
looks like when it abandons these principles in favor of elevating patient
autonomy, choice, and subjective well-being.
To organize our approach to this domain, in this chapter we follow two of
our previous cases and add another in order to focus on three prominent
topics: contraception, assisted reproduction, and gender and sex transition.
In chapter 7 we turn to the issue of abortion.
Before going further, we note a looming difficulty. Clinical ethical
controversies regarding sexuality and reproduction disproportionately focus
on and have consequences for women. Moreover, the approach we advance,
in which medicine is oriented to health as one among several basic human
goods, leads to conclusions that many will see as contradicting women’s
“reproductive rights and freedoms” and women’s well-being more broadly
conceived. If that were not enough, both of us are men, a fact that to some
readers makes us unqualified to address questions that bear more heavily on
women. For all of these reasons, we proceed with caution, but we proceed
nonetheless.
THE PILL AND THE NEW MEDICINE
Whether the advent and subsequent dissemination of contraceptives should
be celebrated or lamented (a topic we address below), “the pill” profoundly
altered what patients expect of physicians and what physicians expect of
themselves. We noted earlier that as biomedical science has expanded, it
has made possible many uses of medical technology that are not obviously
directed toward preserving and restoring health. The paradigmatic example
of such interventions, and perhaps the most consequential for medical
ethics, is the contraceptive.
In 1979, roughly twenty years after the US Food and Drug Administration
(FDA) approved the first oral contraceptive,¹ Mark Siegler and Anne
Dudley Goldblatt wrote,
The oral contraceptive medication was the first prescription drug that was
(and is) in effect, a self-prescribed “treatment.” Patients—i.e., medical
consumers desiring elective medication—demanded that physicians
prescribe the contraceptive pill. Other popularly self-prescribed medications
soon followed . . . [and] came to be seen as appropriate solutions or
treatments for problems previously considered individual or social
concerns, but in any case not biological abnormalities or specific diseases.²
Siegler and Goldblatt, neither of whom had any moral objections to
contraceptives as such, nevertheless worried that the widespread
prescription of contraceptives by physicians established a problematic
pattern in which patients pursue and receive interventions that have
biological and physiological consequences—and so are sought from
physicians who are licensed under US law to “provide” such interventions
—and yet are not clearly required by physicians’ traditional orientation to
the health of their patients. They worried that this widespread pattern was
leading to the phenomenon of the “demanding patient” and was teaching
patients and physicians alike to think of the physician as a mere provider of
healthcare resources.
Public perceptions and expectations regarding physicians have continued to
shift in the directions Siegler and Goldblatt worried they would. As we
discuss below, prescribing contraceptives is not obviously congruent with
an orientation to the patient’s health, yet prescribing contraceptives has
come to be seen as obviously part of a physician’s task. To support this
shift, health, objectively defined, has steadily been displaced by a much
more expansive notion of women’s health (a version of well-being) that
includes sexual and reproductive autonomy and reliable family planning.
This shift leads physicians to detach from practicing medicine under the
Way of Medicine’s orientation to their patients’ health in favor of
“providing healthcare services” according to the wishes of their patients. In
the former, the physicians’ judgment is essential. In the latter, that judgment
is either irrelevant or an impediment to their patients’ achieving well-being.
There is a logical progression to these shifts:
1. People desire a state of affairs (e.g., temporary sterility) that doctors can
bring about.
2. The desired state of affairs is not obviously related to health.
3. The aims of medicine, therefore, are broadened, either by adding to
health other aims (e.g., reproductive autonomy) or by expanding the
definition of health (e.g., to well-being) so that it includes these additional
aims.
4. Physicians cannot, as a result, have the authority that comes with
expertise regarding the aims of medicine since they have no authority of
expertise regarding this expanded set of concerns (e.g., whether and when
women should be open to pregnancy).
5. Physicians should be nondirective in their counsel to patients, giving
accurate information but letting patients decide how and when their
physicians will cooperate to bring about the states of affairs that the patients
desire (whether sterility, pregnancy, or something else altogether).
These shifts in public and professional understandings put pressure on
physicians to either go along or leave the profession, and they underpin the
swing of the pendulum from paternalistic medicine to the patient-as-client
model undergirding the PSM. The pendulum received a decisive push when
family planning was incorporated into the domain of medicine.
CONTRACEPTIVES IN THE CLINICAL SETTING
Cindy Parker, the twenty-year-old undergraduate student we met in chapter
1, presents to the student health clinic to see a physician. The physician
asks, “What brings you to see me today?” She responds, “I just need a
prescription for birth control.”
In the context of the PSM, it is hard to see anything ethically interesting
about this interaction. Ms. Parker requests contraceptives, as the great
majority of American women do at some point in their lives. Indeed,
prescribing contraceptives is one of the most common and routine practices
of obstetrician-gynecologists, family physicians, and others who care for
women of child-bearing age.
The Provider of Services Model
According to the PSM, prescribing the pill to Ms. Parker is uncontroversial,
if not ethically obligatory. First, contraceptives meet the criteria of being
legal, technically feasible, and readily available in the present context. The
physician needs only to write a few words on a prescription pad, something
that physicians are eminently competent and qualified to do. Meeting these
criteria implies that the intervention (contraception) is among those options
that a physician must offer to a patient in order to duly respect the patient’s
autonomy. The physician might ask Ms. Parker questions and share
information with her about the actions and side effects of different
contraceptives in order to make sure her request is free and informed, but
after doing so the physician must honor Ms. Parker’s choice.
Notably, in the principlist framework favored by the PSM, the principle of
beneficence also moves the physician to prescribe the contraceptive, insofar
as only Ms. Parker is in a position to decide what is good for her—that is,
whether a contraceptive will contribute to her well-being or not. Only she is
in a position to consider the various states of affairs that she values, such as
finishing her degree and advancing in her career, as well as enjoying sexual
intimacy when that seems right to her. She may hope to have children one
day, but pregnancy now would substantially disrupt her life plan.
Contraceptive technology allows her to pursue her goals without the fear of
becoming pregnant.
To this basic structure of reasoning, PSM proponents may add other
considerations. They may note that contraceptives are relatively safe.
Although the PSM is often willing to set aside the health of the patient in
order to achieve other patient goals, to date most ethicists have supported
physicians who declined to provide interventions that threaten imminent
substantial bodily harm to the patient (some exceptions are addressed
below). So, for example, surgeons are supported in refusing operations that
will cause significant harm and have little prospect of restoring health.
Contraceptives, by contrast, do not seem to reach that threshold.
Contraception-associated risks of major harms such as blood clots and
stroke remain small. Moreover, pregnancy brings its own health-related
risks, so that a harms-reduction model appears to support using
contraceptives to minimize bad health outcomes downstream.
Then there is the question of justice. Access to effective contraception has
made it possible for millions of women like Ms. Parker to pursue vocational
pathways that early motherhood might foreclose. As such, many would
argue that Ms. Parker has a justice claim that the physician must respect.
Ultimately, only Ms. Parker is in a position to weigh all of the desired and
undesired consequences of using or not using contraceptives in order to
make an informed choice about whether a contraceptive is right for her. In
light of all this, it seems obvious under the PSM that the physician should
prescribe what Ms. Parker requests.
The Way of Medicine
On the Way of Medicine, this same case becomes problematic. Our
framework starts not with the question of whether prescribing
contraceptives is legal, feasible, and available but instead with the question
of whether prescribing a contraceptive is congruent with the physician’s
commitment to her patient’s health. The answer to that question is not
obvious in this most common of cases, insofar as being capable of
pregnancy is a sign of health for a woman of Ms. Parker’s age. Prescribing
a contraceptive thus fits awkwardly with a commitment to health, if it does
not indeed contradict that commitment.
We can imagine cases in which our framework might straightforwardly
affirm the prescription of drugs that in most cases are used as
contraceptives. For example, hormonal contraceptives are often prescribed
to treat medical conditions such as endometriosis or bleeding fibroids, or
even to restore healthy menstrual patterns. In such cases, the physician who
prescribes the drug seems to do so for the patient’s health. Temporary
sterility is foreseen as a side effect in such cases, but it need not be and
often is not intended, and there is often a proportionate reason to accept the
side effect.
In the usual case, however, as in Ms. Parker’s, physicians prescribe
contraceptives not to preserve and restore health but rather to make the
patient temporarily sterile. That action not only departs from the physician’s
commitment to patient health but also seems to contradict that commitment.
Pregnancy is a sign of health for a young woman who engages regularly in
sexual intercourse. Indeed, if Ms. Parker were to tell her physician that over
the previous three years, she and her boyfriend have had sex regularly
without using condoms or other contraceptives, the physician then would
have good reason to think that something is wrong with the health of Ms.
Parker or her boyfriend. So when a physician directly diminishes a patient’s
fertility—by prescribing a contraceptive or conducting a sterilization
procedure—she thereby directly diminishes her patient’s health.
Does this argument define health too narrowly? Contraceptives may
diminish one dimension of health, but what about the proper working of the
organism as a whole? How can the health of Ms. Parker on a contraceptive
be considered deficient relative to the health she would have if she were
thirty-six weeks pregnant, with swollen legs, elevated heart rate, and a
reduced capacity for exercise? Moreover, what about those risks of injuries
to health that pregnancy brings: bleeding, infections, a ruptured uterus, even
death? These questions have force, particularly when a woman has a
condition, such as a congenital heart defect, that puts her at markedly
elevated risk of harms to health during pregnancy. Within the framework
we propose, it is along such lines—orientation to a patient’s health—that a
physician should ask himself whether prescribing a contraceptive in a
particular case coheres with or contradicts his profession.
In this respect, the case of being called on to prescribe a contraceptive
might seem similar to other instances in which a physician seems to engage
negatively with one dimension of a patient’s health for the sake of others.
Thus, amputation of a limb removes a part of the organism for the sake of
the whole; surgery involves cutting into healthy tissue to get at the
unhealthy. Is the provision of a contraceptive similar to either of these
instances?
We think not. Effecting temporary sterility is at least a suppression of a
patient’s healthy functioning in a way that removal of a gangrenous limb is
not. Once a limb or organ is gangrenous, there is no state of health available
to the organism except one in which the diseased part is removed. That new
state—without the diseased part—is clearly a state of improved health
relative to the state in which the diseased part remains intact. A parallel
situation occurs when a dying patient is suffering terminal agitated
delirium; then “cutting off” the diseased state of consciousness using
sedatives may restore the only measure of health available to a person in
that condition—one clearly reduced relative to a healthy organism but
improved relative to that particular state of agitated delirium. We discuss
this further in chapter 9. Intentionally causing temporary sterility in a case
like Ms. Parker’s differs from these cases. Fertility is not like gangrene or
delirium; rather, causing temporary sterility in this case seems to involve
reducing the health of the whole for the sake of preserving some dimension
of health, or at least being hostile toward one dimension of health (that
dimension which makes reproduction possible) for the sake of other
dimensions.
Contracepting also differs from accepting the incidental damage to health
that inevitably occurs as a side effect of medical interventions. In
Hippocrates’ Oath and Asclepius’ Snake, Thomas Cavanaugh notes that
these “wounds of treatment” inevitably accompany all medical efforts to
restore order to a dis-ordered body, but the wounds are not intended.
Indeed, medical progress is measured in part by mitigating the wounds that
accompany medical interventions. In the case of contraception, however,
the physician intentionally suppresses healthy function as a means to some
other goal—even a health-related goal. Doing so seems to contradict the
physician’s professed and fundamental orientation to health and thus to be
an instance of what Cavanaugh calls “role-conflation” harm—harm that is
intended by the physician contrary to the demands of her profession.³
To summarize, prescribing contraceptives, at least in Ms. Parker’s
representative case, contradicts the physician’s commitment to the patient’s
health; contracepting is not, to put the point more strongly, medicine at all,
even if it has many of the trappings of medicine.
This verdict of the Way of Medicine is supported by reflection on the
requirements of practical reason. Practical reason converges with the Way
of Medicine in an argument against contraception that turns on the way that
using a contraceptive seems sometimes to involve hostility toward the child
who might otherwise come into existence as the fulfillment of sexual
intercourse. We argued in chapter 5 that one intends what one adopts in
one’s proposal for action, encompassing both the end one is pursuing and
the means one chooses to bring about that end. In contraception, one
anticipates an action—engaging in sexual intercourse—that could result in a
child as a consequence, and one wishes to prevent that consequence. So one
chooses a contraceptive as the means to prevent a child’s coming into
existence. This action seems contrary to the good of human life.
Some thinkers have gone as far as to argue that the choice to contracept is
structurally similar to the choice to abort. Contraception and abortion are
not the same wrongs, for there is no actual child in the case of
contraception, but a culture in which the great majority of people
intentionally prevent the existence of innumerable possible children would
not surprisingly extend its efforts to prevent children from being born by
also supporting the practice of abortion. Indeed, if children are expected to
follow from sexual intercourse only when their existence is wanted,
abortion becomes a critical backup strategy for dealing with unwanted
pregnancy. In the Supreme Court case Planned Parenthood vs. Casey, the
Court noted, “For two decades of economic and social developments,
people have organized intimate relationships and made choices that define
their views of themselves and their places in society, in reliance on the
availability of abortion in the event that contraception should fail.”⁴
Contraception turns out to be not so much a bulwark against abortion as a
gateway to it.⁵ Of course, if abortion is not morally problematic, this
suggestion will bring no disquiet. As we will show in chapter 7, however,
abortion itself gravely violates the good of human life.
ASSISTED REPRODUCTION
Abe Anderson remarried three years ago. His wife is now forty-three years
old and has not gotten pregnant despite their deep hopes to have children.
Mr. Anderson and his wife present to her ob/gyn asking for help in
achieving pregnancy
The Provider of Services Model
The PSM approach to this clinical moment can be summarized briefly, as
prior themes are repeated here. Respect for patient autonomy gives us a
reason to do what the Andersons ask. In contrast to Ms. Parker, Ms.
Anderson wants to be pregnant, so the state of pregnancy is good for her;
beneficence compels clinicians to pursue that goal. The law, particularly in
the United States, where regulations are few, permits quite a range of
technological interventions to bring about pregnancy, and many physicians
make those interventions available; physicians are also compelled by what
is customary and standard. Moreover, most assisted reproductive
technologies involve pharmaceuticals or surgical interventions that only
physicians are licensed to provide, so Ms. Anderson seems to have a justice
claim—that her physician should make available that which is legal, which
others readily obtain, and to which she has access only with a physician’s
help.
The principle of nonmaleficence seems to countervail these imperatives to
some extent, insofar as many assisted reproductive technologies pose risks
to the woman’s health. For example, in vitro fertilization (IVF) involves the
risks posed by ovarian hyperstimulation and surgical retrieval of oocytes.
As noted above, the state of pregnancy itself brings risks to health that tend
to increase with age. But unless these risks reach the threshold of directly
and imminently causing major bodily injury, physicians must defer to their
patients to weigh the risks and benefits, broadly construed, and make the
choice that is best for each individual patient—that is, the choice that
maximizes all of the goods, as she defines them, available to her.
Curiously, in the domain of sexual and reproductive healthcare, the PSM
leads us to treat the same state of affairs as good and to be sought for one
patient and as bad and to be avoided for another patient; the only difference
is whether the patient wants the state of affairs. Unlike the Way of
Medicine, which focuses consistently on objective human goods, the PSM
detaches from the question of whether a possible state of affairs brings
about genuine good, considering only whether that state of affairs is
wanted.
The Way of Medicine
Assisted reproduction becomes problematic on the Way of Medicine. The
physician again asks, in the first instance, what accommodating the
Andersons’ request has to do with her commitment to preserve and restore
Ms. Anderson’s health, but here the answer is a bit more complicated. If
Ms. Parker had regular sexual intercourse without contraceptive measures
from ages eighteen to twenty-one and did not become pregnant, that would
be evidence of something wrong with her health or the health of the man
with whom she had regular intercourse. Is the same not true for Ms.
Anderson?
Yes, it is, although Ms. Anderson’s case highlights that health is always
relative to a person’s sex and age. To state the obvious, no physician to our
knowledge would consider it a medical problem that Mr. Anderson has not
achieved pregnancy, because the health of men does not include child-
bearing capacity. Similarly, physicians would not at this time consider it a
medical problem that Ms. Anderson had not achieved pregnancy if Ms.
Anderson were eighty years old. The health of eighty-year-old women
simply does not include the capacity to bear children. Ms. Anderson, forty-
three years old and premenopausal, is at a point in life in which the capacity
for pregnancy is characteristically diminished relative to, say, that of a
twenty-three-year-old woman, but some healthy forty-three-year-old
women do become pregnant. Therefore, in the Way of Medicine, the fact
that Ms. Anderson has not become pregnant does give the physician a
reason to get involved—but in what manner, and why?
First, what is the physician’s goal in this case? The initial reaction might be,
“A baby, of course.” After all, the only reason Ms. Anderson wants to be
pregnant is that she wants a baby—presumably a baby that is genetically
hers and her husband’s. If the physician had a reliable way to bring about
pregnancies, but such pregnancies would inevitably end in spontaneous
abortion, Ms. Anderson would not be interested in the physician’s help. Yet
we have already said that health is the proper goal of medicine, and a baby
is not health, so although the physician might reasonably join the
Andersons in hoping that their sexual union will result in a baby’s being
conceived and born to them, the baby—however good and however
strongly desired by the Andersons—lies outside the proper scope of the
physician’s practice.
To give a parallel example, Ms. Anderson might suffer from minor arthritis
that many people would ignore but that keeps her from an activity that she
highly values—say, a form of dance to which she has devoted much of her
life. In such a case, as the physician attends to her arthritis, the physician
might join her in hoping that she will dance again and might readily
understand why this condition that others consider trivial concerns her so
much. Yet the physician’s goal is not dance but the health that makes dance
possible. Similarly, the physician’s aim with respect to Ms. Anderson’s
desire to have a child is the health that makes pregnancy and subsequent
childbirth possible.
Within the Way of Medicine’s approach to Ms. Anderson’s health, much
can be done. Physicians might seek to restore healthy patterns of ovulation,
sometimes through attention to nutrition and exercise and sometimes
through pharmacological interventions—including medications typically
used as contraceptives—such as exogenous hormones to replace or return to
normal levels those that are disrupted in one way or another. Physicians
might intervene via hysteroscopy or laparoscopic surgery to restore patency
to the woman’s fallopian tubes. In parallel, a physician might work to
improve any deficiencies in Mr. Anderson’s capacity to produce healthy
semen, including viable sperm; to achieve and sustain an erection; and to
reach ejaculation. All of these interventions might be reasonably carried out
on the Way of Medicine. These practices are standard for doctors who focus
on responding to infertility, and today a minority of such physicians
explicitly limit themselves to such practices. The latter include those who
put themselves forward as practitioners of NaPro Technology (natural
procreative technology).⁶ These physicians aim at health, hoping that such
health will be followed by pregnancy and childbirth, much as physicians
treating arthritis aim at health, hoping that such health will enable dancing
and other activities that display health.
As we have noted, the PSM is willing to circumvent health altogether in
order to produce a baby. Indeed, this willingness characterizes the entire
terrain of contemporary reproductive medicine in the United States, rightly
characterized by many as a kind of Wild West in which all things are
permitted. Physicians practicing in this area engage in artificial
insemination, in vitro fertilization, surrogacy, and other interventions
intended not to restore or preserve health but instead to use technology and
the remaining health-related capacities available to bring about the birth of
a wanted baby.
PSM-focused physicians will readily subject a woman to substantial risks to
her health if she is willing to undergo such risks in order to conceive a baby.
Gonadal hyperstimulation, for example, is known to cause ovarian
hyperstimulation syndrome, which brings an array of health problems and
in severe cases can be life-threatening.⁷ In the case of oocyte donors,
physicians subject the women to these risks while also treating them
instrumentally, as means to satisfy someone else’s desires. In gestational
surrogacy, physicians likewise treat the surrogate mothers as instruments to
satisfy another’s desires while they impose on the gestating woman all of
the risks that accompany pregnancy. The problem is not so much that
physicians tolerate side effects but that they tolerate side effects that
damage health in order to obtain states of affairs that have nothing to do
with the physicians’ commitment to this good. For these reasons, simply on
the basis of their constitutive commitment to the patients’ health, physicians
have reasons to avoid many assisted reproductive technologies.
As with contraception, the requirements of practical reason converge with
the Way of Medicine’s judgments on these types of interventions. Consider
the argument against those assisted reproductive technologies that separate
procreation from sexual intercourse. In brief, interventions such as IVF seek
to make a baby, exerting mastery over the raw materials of nature (gametes)
by using the technologies available to bring into being a desired product, in
this case, a living human being. As with other instances of making, the
product comes into existence at the pleasure of the makers, who accept the
product on the condition that it satisfies the desires that led them to engage
in the productive process. This feature of conditional acceptance is
manifested in the widespread practices of grading embryos, discarding
suboptimal embryos, selectively reducing embryos when an undesired
number have implanted, and cryopreserving, and perhaps donating to
science, “spare” embryos.
We develop the argument further in chapter 7, but here we note that human
beings at the embryonic stage are still human beings and therefore deserve
the basic respect that we accord to other human beings—especially the
respect of not being killed. Nor should we treat any human being, including
a human embryo, as merely a product or a thing to be brought into existence
at will, for doing so radically contradicts the demands of equality that are
central to the good of friendship even in its thinnest and most extended
sense.
In this sense, human beings are called to a kind of friendship with all other
human beings, in virtue of recognizing that all other human beings also are
fulfilled by basic human goods. This minimal friendship requires us to treat
all human beings with equal respect. Thicker forms of friendship build on
this basic form: even when children cannot yet reciprocate, parents act for
the good of their children as part of their good as parents. In the full
paradigmatic form of friendship, each friend treats the good of the other as
his own good.
IVF and related practices undermine the good of friendship by treating
another human being as a product—as something whose existence is
subject to one’s own will and mastery. These practices undermine
friendship even in its thinnest form, for no human being wishes to be
treated as a thing by another. Moreover, these practices are deeply at odds
with the form of friendship parents characteristically demonstrate toward
their children, in which they neither make their children the objects of their
will nor make their love contingent on the childrens’ satisfying the parents’
desires. One who accepts you only on the condition that you satisfy their
desires cannot be called your friend. With respect to conjugal intercourse,
the attitude appropriate to friendship is fully open to, if not also hopeful for,
that act’s finding its fullest realization in a new life over which the woman
and the man ultimately have little control.
Thus, in vitro fertilization, human cloning (if and when it arrives), and even
more limited technologies such as artificial insemination all seem morally
impermissible. Once again, we have only sketched the argument, which has
been presented elsewhere at greater length and with attention to objections.⁸
But our overall aim here has been to show that the Way of Medicine and the
requirements of practical reason converge in their conclusion that the Wild
West of assisted reproductive technology needs reform. At present, its
modes of practice are deeply at odds with the purposes of medicine and the
demands of practical reason.
SEX AND GENDER IN TRANSITION
Jules Baker, an otherwise healthy thirteen-year-old boy we haven’t
introduced you to before, suffers from gender dysphoria. He identifies as
female and wishes to take hormone-blocking supplements that will delay
puberty until he is old enough to undergo a full sexual transition: sexual
reassignment surgery to remove his male sex organs and provide female
facsimiles by means of plastic surgery.
The Provider of Services Model
The cases of Ms. Parker and Ms. Anderson make plain that physicians
practicing in accordance with the PSM will often set aside the norm of the
healthy organism if doing so accommodates the autonomous choices of
patients. So, under the PSM, whether the physician works to induce sterility
or enhance fertility, to get rid of pregnancy or produce it, often depends
entirely on the patient’s choice. Physicians respectfully refrain from
drawing conclusions about the signs of a “healthy” human organism until
they know what a particular human being wants with respect to his or her
body.
The case of Jules indicates how far this logic extends in contemporary
medicine. If the signs of health with respect to sexual intercourse and
pregnancy depend on the wishes of the patient, why not also the signs of
health with respect to secondary sex characteristics? If the goals of
medicine are rightly determined by the informed choices of autonomous
patients—by what patients determine is good for them—perhaps the form
of “healthy” secondary sex characteristics should also be determined by the
informed choices of patients—by what patients decide are the right
secondary sex characteristics for them.
We now see a burgeoning practice of what have come to be called gender
transition and gender-affirming services—the use of exogenous hormones
and surgical treatments to block puberty and to fashion, as closely as
possible, secondary sex characteristics that appear to match patients’
“gender identity” or “gender preference.”
Changing the secondary sex characteristics of people like Jules takes the
PSM’s rationale one step further, treating the patients’ sexual organs and
underlying sexual physiology as either a good to be preserved or a harm to
be remedied, strictly on the basis of the patient’s self-perception. In the
PSM framework, in the case of Jules, who does not want male secondary
sex characteristics, those characteristics are harms to him, which the
physician has an obligation to remedy insofar as possible. Might the case of
Jules present an opportunity to see the PSM’s inadequacies? If our language
and our framework of analysis lead us to think that we should block a
thirteen-year-old boy’s sexual maturation—often rendering the boy
permanently sterile in the process—perhaps we need a new language and a
new framework.
The Way of Medicine
The Way of Medicine starts with a claim that has been implicated in much
of our discussion thus far. Put simply, humans, like all other animals, are
organisms. Indeed, this fact makes it possible for us to recognize that bodily
health is a real human good rather than an ethereal aspiration.
A corollary claim immediately follows: our existence as human animals is
sexed. We are male or female organisms by virtue of having a root capacity
for reproductive function, even if that capacity is immature or damaged. As
with countless other species, the human reproductive function is performed
jointly by two organisms of opposite sexes; no individual human being
suffices for the performance of reproduction. The two sexes reflect root
capacities for the general structural and behavioral patterns involved in
human reproduction. In male humans, this capacity comprises the structures
necessary for the production of male gametes and the performance of the
male sex act, insemination. In females, the capacity comprises the structures
necessary for the production of oocytes and the performance of the female
sex act, reception of semen in a manner disposed to conception.
Some individuals, due to disorders of sex development, present genuine sex
ambiguity. For example, females with congenital adrenal hyperplasia can be
born with male-appearing external genitalia. To give another example,
disorders with respect to the production and metabolism of testosterone can
cause babies with male chromosomes (X, Y) to develop characteristically
female external genitalia. Some sex and gender theorists have made much
of these and other intersex cases in arguing that the simple binary of male
and female fails to do justice to the diversity of possible sexes. And of
course, opening up the number of “possible sexes” does a certain amount of
work in opening up the possibility of changing one’s secondary sex
characteristics, which is precisely Jules’s desire.⁹
Yet those who deny the sexual binary on the grounds of intersex cases
ignore the distinction between paradigm cases and cases that decline from
the paradigm. This distinction, recognized since Aristotle, applies to many
kinds, including many kinds within the natural order.¹⁰ Organisms, for
example, come in ones: that is part of what it is to be an organism in the
paradigm case. But the Hensel conjoined twins, possessing two arms and
two legs but also two heads between them, are neither precisely one nor
two.¹¹ This distinction between paradigm cases and cases that decline from
the paradigm is necessary to make sense of what physicians do when they
recognize congenital abnormalities, including ambiguous genitalia. Indeed,
the distinction is necessary to make sense of the concept of “intersex”—that
is, not clearly conforming to either the male or the female paradigm. In the
same way that conjoined twins do not refute the claim that organisms are
one, neither do instances of sex ambiguity refute the claim that human
organisms are either male or female.
The Way of Medicine, in its orientation to patients’ health, resists
inducements to interfere with, interrupt, or otherwise revise the healthy
development, maturation, and function of male and female sexual organs
and capacities. Note that the Way of Medicine’s resistance to such
interventions does not depend on conclusions about normative gender
expression, much less about normative sexual practices. Rather, its
resistance follows directly from its orientation to health as an objective
bodily good for and in human animals, male and female. Medicine operates
within the boundaries required by pursuit of this good.
That being said, those who seek to change a person’s sex not only
contradict medicine’s orientation to health but also always and necessarily
fail in what they attempt. Indeed, here the logic of the PSM leads to absurd
contradictions in which some justify changing secondary sex characteristics
by claiming that one’s phenotypic (or genetic) properties can be at odds
with one’s real sex—a feature of some disembodied reality to which only
the individual has access—while others justify such interventions by
claiming that there is no such thing as one’s real sex.
From these mutually incompatible claims, further contradictions follow. To
affirm who Jules is, we are told, physicians must reject Jules’s current form
and refashion his body to look very different from the body of Jules as he is.
Because gender is socially constructed—not dependent on biology and
anatomy—we are to change that biology and anatomy on which gender
does not depend. In order to get beyond the constraints of the sexual binary,
we are to reify it by seeking to produce secondary sex characteristics
determined by that binary. The contradictions in such reasoning would be
comical if they did not result in such tragic consequences for people like
Jules.
Moreover, changes to secondary sex characteristics fall far short of bringing
about a change in sex. The latter would make a male organism capable of
engaging in the female sex act, or vice versa. Sex change (“gender
transition”) interventions do nothing of the sort. Rather, they culminate in
surgeries to remove sexual organs—for example, a penis or a vagina—and
to refashion simulacra of the organs that members of the opposite sex
characteristically possess. But one can neither make a vagina by creating an
orifice nor make a penis by creating something that becomes enlarged on
stimulation. One could genuinely make a penis or a vagina only by re-
creating the entire biological economy of the human being, whose
development as a male or female began at conception.
Within that primordially sexed biological economy, the functions of the
penis and the vagina are discernible in relation to the sexual act to which
they contribute, which culminates when sperm are deposited in the vagina,
where these sperm are capable of processing toward and penetrating the
oocyte. Moreover, the penis and the vagina are linked intrinsically not only
forward to these functions that they might eventually perform but also
backward to processes, such as the production of gametes (all oocytes are
produced in utero), which began many years before sexual intercourse is
even possible. The biological development of male and female human
organisms involves the working out through time of capacities that were
present at the beginning.
Physicians can transplant a penis to a male or fashion a vagina in a female
so that the organ becomes truly part of the person’s biological life.¹² The
situation is similar to that of a heart transplant. The organ is integrated into
an organism whose biological matrix is fundamentally oriented toward that
organ’s presence and for whom the absence of the organ represents a
significant diminishment of health. Redressing such diminishments is
entirely within the scope of medicine’s mandate, even if the redress does
not fully restore the diminished function. For example, if a transplanted
penis allows normal urination but does not result in full erectile function, it
still restores a dimension of health. No surgery, however, can integrate a
male sex organ into the biological life of a being whose root capacities are
female (and vice versa).¹³
Unfortunately, the PSM seems increasingly committed to ignoring the
antinomies and contradictions posed by granting patients the gender
transition or gender affirmation interventions they seek. In doing so, the
PSM makes patients’ wishes and choices determinative of both sex and the
purpose of medicine. Some physicians today use exogenous hormones and
surgical interventions to bring about changes in patients like Jules. These
changes, were they brought about in the absence of the patient’s asking that
they be done (or, in pediatric patients like Jules, the patient’s parent asking
that they be done), would be considered profound mutilations of a healthy
body. So the contradictions in the PSM lead to tragic consequences, as these
interventions irreversibly damage the health of the patient.¹⁴ Yet, because
these interventions are patient-chosen, the PSM and its surrounding social
and legal culture not only permit physicians to conduct these interventions
but also increasingly charge physicians who refuse to participate in them
with abandoning their professional obligations to “put the patient first.”¹⁵
The Way of Medicine cannot but dissent from these increasingly common
judgments. Because the Way takes its bearings from the health of the
patient as a member of the human species, the Way of Medicine sees that
every surgical attempt to change an individual’s sex damages or destroys
some secondary sex characteristic that otherwise displays health and is
necessary for reproductive function, itself a constitutive dimension of
human health. This judgment of the Way of Medicine is only strengthened
by the requirements of practical reason, which add a corollary concern:
since sexual capacities make possible the one-flesh union of marriage,
interventions that damage or destroy those capacities also prevent the
realization of the basic good of marriage.
Thus, the Way of Medicine cannot countenance doing to Jules what he asks,
not because of bigotry or phobia but because, in solidarity with patients like
Jules, medical practitioners should act only in ways that are congruent with
the patient’s health and only in ways that are open to other basic goods,
including marriage and child-bearing. When a young woman with anorexia
sees herself as overweight, she manifests a disorder of perception. The good
physician shows no disrespect to the patient when she refuses to facilitate
further weight loss through surgery or medications. Rather, such refusals
are part and parcel of the physician’s commitment as a physician to care for
the patient. Similarly, Jules deserves our care and attention, but his problem
is not the presence of male secondary sex characteristics. Rather, he suffers
a disorder of perception regarding his nature as a human being, one who is
irrevocably and irreducibly male. The physical harm of bodily mutilation
should not compound the harms of that illusory perception.
To our minds, the willingness of contemporary medicine and society to
embrace such solutions manifests one of the fullest culminations to date of
the PSM to abandon concern for objective goods, to treat medicine as if it
were merely technique, and to put medical technologies in service of
autonomous desire. That culmination is continuous with the PSM’s
approach to contraception, assisted reproduction, and many other questions
surrounding sexuality and reproduction that we cannot address here. It’s no
surprise, then, that our treatment of these issues runs radically counter to
current medical orthodoxy.
Nevertheless, the Way of Medicine’s approach to these issues preserves the
possibility of medicine’s being a profession and of medical professionals’
being more than mere functionaries. The Way of Medicine also—as we
show in the next chapter, on abortion—acknowledges the moral demands
that a common humanity places on all of us, physicians and nonphysicians
alike.
CHAPTER SEVEN
Abortion and Unborn Human Life
Let’s return to the story of Cindy Parker.
Cindy received a prescription for birth control pills and took the pills
consistently until she broke up with her boyfriend. She was not sure when or
if she might have sex again, and one of the nurses at the student health
clinic had told her that if she had unprotected sex, she could buy emergency
contraception at the pharmacy without a prescription. Three months later
she did have sex again, and the following morning she purchased and took
emergency contraception pills. Three weeks after that, she returned to
student health, having noticed that she had missed her period. A pregnancy
test confirmed that she was pregnant. With tears in her eyes but
determination, she asked, “Where can I get an abortion?”
No issue in medical ethics is more consequential and politically divisive
than abortion, and though the legal and ethical lines have been clearly
drawn for decades, political leaders, medical ethicists, clinicians, and the
public alike continue to contest those lines, pushing for or against abortion
restrictions.
Our goal here is not so much to trace out all of the arguments for or against
abortion as to show the differences it makes if we consider Cindy’s request
for an abortion within the framework of the provider of services model
(PSM) versus the Way of Medicine.
THE PROVIDER OF SERVICES MODEL
The PSM approaches a request for abortion more or less as it does a request
for contraception, assisted reproduction, or gender transition. To start, the
fact that abortion is constitutionally protected and is endorsed by the
American College of Obstetricians and Gynecologists (ACOG) as an
essential healthcare service gives Ms. Parker’s request the force of law and
custom.¹ In addition, autonomy again looms large in the ubiquitous
language of choice, while beneficence again asks us to consider all of the
different outcomes that Ms. Parker might have valued, with deference to
Ms. Parker to decide whether abortion was the choice that would bring
about the greatest good for her. The condition of nonmaleficence was
satisfied in that early abortion is safe, arguably carrying less risk to Ms.
Parker’s health than continuing her pregnancy to term. And, once more,
justice asked us to consider whether it was fair for Ms. Parker to be forced
to carry to term a pregnancy that she did not want.
The language of justice has become particularly prominent among those
who advocate for legal abortion. Medical students and
obstetriciangynecology residents today often receive training in
“reproductive justice,” a concept that makes access to the full range of
family planning options an essential part of broader social justice for
women and girls. If Ms. Parker was to have the same prospects that she
would otherwise have had if she were male, she could not be asked to
shoulder consequences that did not fall on the man with whom she had sex.
Unlike him, Ms. Parker would have her life plans radically disrupted if she
did not have access to abortion.
So while the PSM might acknowledge genuine moral concerns regarding
abortion, it will consistently bracket them off as a matter of personal values
that intrude on the clinician’s professional obligation to accommodate, at
least by referral, the patient’s request for abortion. As long as Ms. Parker
was making an apparently free and informed choice of the healthcare
service she believed was best for her, her physician had to either perform
the abortion or direct Ms. Parker to someone who would.
THE WAY OF MEDICINE
The question of abortion is dramatically recast in the Way of Medicine.
Right up front, the Way of Medicine has us ask: what does abortion have to
do with the physician’s commitment to preserve and restore Ms. Parker’s
health? There are cases—for example, of severe preeclampsia or significant
heart conditions—in which the condition of continued pregnancy gravely
threatens the woman’s health, and we return to such cases below. But in the
great majority of cases, as in Ms. Parker’s, abortion is sought not for the
sake of health but for the sake of not having a baby. Abortion is a means of
preserving current and future possibilities for the woman that appear to be
threatened by carrying the pregnancy to term. That abortion concerns
choice, not health, is shown by the fact that a physician will treat two
otherwise identical patients differently based simply on whether their
pregnancies are wanted. With one patient, the physician will celebrate the
fact that she has achieved pregnancy and even promise to use all manner of
medical resources to see that her pregnancy continues to term. With the
other, the physician will perform or refer the patient for an abortion.
So far, then, in the Way of Medicine, physicians have good reason to
decline to participate in elective abortions, quite apart from the question of
what abortions do to the fetuses. In Ms. Parker’s case, the physician might
decline her request simply because his commitment to her as a physician
does not include bringing about a state of affairs in which she is no longer
pregnant.
When the life and health of the fetus are taken into account, however, the
physician’s refusal becomes imperative. From the time that the Hippocratic
Oath was formulated until shifts in some quarters starting in the 1960s,
medical oaths and codes in the West consistently condemned elective
abortion as contradicting physicians’ constitutive professional commitment
to never intentionally damage or destroy the health and life of patients. The
Hippocratic Oath stated, “I will not give to a woman an abortive remedy.”²
The “Hippocratic Oath Insofar as a Christian May Swear It,” which had
much wider circulation in the early centuries of the Christian era, expanded
this prohibition by stating, “I will not give treatment to women to cause
abortion, treatment neither from above nor from below.”³ The World
Medical Association’s 1948 Declaration of Geneva included the promise “I
will maintain the utmost respect for human life from the time of conception,
even under threat.”⁴
Notably, in 1983 the words “from the time of conception, even under
threat” were revised to “from its beginning, even under threat,” and in 2005
these words were removed from the Declaration of Geneva altogether.
These revisions were mirrored by changes in the codes of other professional
associations,⁵ and they reflect the fact that abortion was legalized in many
countries in the later decades of the twentieth century. They also reflect,
however, growing disputes about what the fetus is and whether respect for
human life really rules out abortion.
Surely a fetus is not a human being, some have objected, but instead only a
clump of cells. Or, even if the fetus is a human being, surely we do not owe
to it the same kinds of treatment we owe to the human beings reading and
writing this book. Moreover, what about the hard cases, in which a
woman’s life is in significant jeopardy? What authority do physicians, much
less the state, have to tell women they should not be free to make such
personal, indeed private, choices? We look at each question on the Way of
Medicine.
ANIMAL ORGANISMS
Throughout this book we have presupposed that we are all animal
organisms of a certain sort: human beings. The practice of medicine is
founded on this truth. The vocation of the healing profession starts with a
recognition that, as animal organisms, humans are susceptible to illness,
disability, decline, and death. We would not need medicine if we were only
disembodied souls or minds.
For complicated historical and philosophical reasons, however, modern
human beings have come to think and talk about themselves as if they were
souls or minds who happen to possess, for a time, a living body. Moderns
are accustomed to say, for just one example, that a person suffering
dementia is “not there anymore.” In part, this way of talking reflects the
cultural elevation of humans’ singular capacity for thinking and choosing—
that mindedness that seems to distinguish humans from the other animals.
Notwithstanding its popularity, this form of dualism is misguided. Pay
attention to your direct experience. Right now, as you read these words, you
are engaged in a sensory act, making use of your eyes and your hands, and
you are oriented in space toward the physical realities of words on a page
(paper or electronic); perhaps you are listening with your ears to sound
vibrations in the air as the recorded book is read to you. These acts are
those of a bodily being, specifically the organism who is sitting, reclining,
or walking (with earbuds) here and now. But you are also following an
argument, a train of thought, that makes use of abstract terms such as
“organism” and “abstract” and “thought.” These acts are those of a minded
being, a being capable of intellection. You are both of those beings, as
evidenced by your use of the word “I”: “I am seeing these words on the
page, and I am understanding them.” Thus, the minded being you are is the
same being as your physical, bodily being. One and the same being reads
and understands, sees and cognizes, moves and abstracts. You are that
human being, that living organism.
THE BEGINNING OF THE HUMAN BEING
If we accept the discussion so far as true, you came into existence whenever
the living organism reading this book came into existence. You were not
preceded by another living human organism, as might be possible if you
were a mind (or even a brain); rather, your existence commenced with the
existence of the human animal reading or listening to this book right now.
When did you begin? The answer, if you are not an identical twin or a
human clone, is simple: you began at fertilization, when a human sperm
penetrated an oocyte and both sperm and oocyte ceased to exist, giving rise
instead to a single-celled zygote. This zygote was itself a single, whole,
individual member of the species Homo sapiens, genetically distinct from
its parents and possessed of a developmental program by which it was able
to execute its own growth and development to the next stages of human
existence: the embryonic stage, then the fetal stage, then the infant stage,
and so on.
The best evidence for this claim comes directly from the science of
embryology and the authority of those who study human development and
the development of other organisms, such as mice. Consider the following
representative passage from K. L. Moore, T.V.N. Persaud, and Mark G.
Torchia’s textbook The Developing Human: Clinically Oriented
Embryology:
Human development begins at fertilization when a sperm fuses with an
oocyte to form a single cell, the zygote. This highly specialized, totipotent
cell (capable of giving rise to any cell type) marks the beginning of each of
us as a unique individual. The zygote, just visible to the unaided eye,
contains chromosomes and genes that are derived from the mother and
father. The zygote divides many times and becomes progressively
transformed into a multicellular human being through cell division,
migration, growth, and differentiation.⁶
Two primary arguments are made against the claim that a human organism
comes into existence at fertilization, but neither argument can be sustained.
First, some claim that because the early embryo is capable of twinning, it
therefore cannot be considered one individual organism. What shall we
make of this? Does the possibility of some one thing becoming two mean
that it once was not one thing? No one who has ever snapped a stick in half
could believe that. Nor, in the domain of living things, are microbiologists
tempted to believe that amoebae, which reproduce precisely by splitting,
were not individual organisms prior to splitting. Similarly, the phenomenon
of twinning does not suggest that the zygote or embryo was not a human
organism prior to twinning. Rather, it indicates that some human beings
came to exist later than fertilization—namely, when their embryo divided,
resulting in two embryos where once there was only one.
The second argument holds that the zygote or early embryo does not have
sufficient unity, within itself, to be considered a living whole. This line of
argument sees the early embryo as merely an aggregate (a “clump”) of
cells. Several problems arise with this claim. What could cause this mere
aggregate to become one thing? Indeed, the transition of numerous cells
into a single organism several days later than fertilization must be seen as
an extremely implausible, inexplicable event. Moreover, embryologists find
an enormous amount of activity, much of it coordinated, among the various
parts of the developing embryo, activity oriented toward ensuring the
embryo’s survival and growth. Nor is this coordinated activity the same in
all cells. Rather, embryologists observe division of labor among the cells of
even the very early embryo, and from the first cell division the roles of
some cells can be distinguished from the roles of others. That is, the embryo
does not appear to biologists as a mere clump or aggregate of
undifferentiated cells.⁷
The two claims just made—that humans are animal organisms and that
human organisms begin at fertilization—concern only the way things are.
They are not yet claims about ethics, about how we ought to act in light of
the way things are. Yet we have said enough to demonstrate a foundational
fact: abortions destroy human lives, where “human lives” means precisely
the lives of actual living human beings. If medicine is committed to the
health of human beings, this fact is of the greatest significance. It leads
directly to the ethical claim that medical practitioners should not perform or
facilitate abortions.
FULL MORAL WORTH AND RESPECT
Our discussion should also appeal to the full resources of practical reason
and its requirements. In addressing abortion, we are concerned with
whether killing certain human beings—namely, the unborn—is morally
permissible. Could it be that as a class the unborn are excluded from the
moral protection owed to other human beings? Three brief arguments can
respond to this question; all have been offered in expanded form
elsewhere.⁸
First, the basic human goods, including the goods of health and life, are not
to be damaged or destroyed in unborn human beings any more than in born
human beings. Recall our claim about basic goods: as intrinsically good,
they give us reasons to act, and intending their damage or destruction can
never be reasonable. Therefore, abortion, when it involves intentionally
destroying the life of an unborn human being, is always wrong, ruled out by
the same principle that governs other moral absolutes. (We address below
whether abortion could be something other than intentional killing.)
Next, because the basic goods of human beings are good for all,
intentionally killing the unborn is unfair. As the second general requirement
of practical reason, fairness was formulated with the awareness that all
human beings benefit from realization of the basic goods. Full
reasonableness requires, then, that we not consider the goods to be less
important, or less good, in some persons than they are in others (including
ourselves). Nor should we, in our pursuit of particular instances of these
goods, prioritize some and neglect others on the basis of arbitrary or
contingent motivations. Both of these patterns violate the Golden Rule,
doing to others what we would not have them do to us.
The proponent of elective abortion who acknowledges the humanity of the
unborn—who is not so self-deceived as to think of unborn human beings as
mere clumps of cells—is proposing to treat the good of life and health as of
lesser importance in some human beings, the unborn, than in others, and to
do so on the grounds that the life of the unborn is inconvenient, unwanted,
small, or an obstacle to a woman’s authentic development. None of the
grounds for sacrificing the lives of the unborn to privilege the lives of the
born seem to us any more cogent than the grounds for privileging white
lives over black, male over female, or native-born over immigrant. Fairness
thus forbids us to exclude the unborn from the class of human beings who
have the right not to be killed.
Finally, the right not to be killed intentionally is reasonably considered a
basic or absolute right. We can distinguish between rights and protections
we possess that are based on our particular contingent and sometimes
changing status, condition, or circumstances, and rights we think of as
absolute. The former include rights to vote, to have one’s work graded on
time, to be given a share in the benefits paid into in a pension system, and
so on. The latter include rights not to be enslaved, raped, tortured, or killed.
The second set of rights are thought to be held always and equally by all
who hold them, whomever that class includes. These rights should thus be
predicated on some truth that is likewise not passing and is true equally of
all who hold such rights and protections. That truth is their common
humanity; being human is the characteristic that all beings who have such
rights possess always and possess equally with all others who have those
same rights. If that is true, the rights not to be enslaved, raped, tortured, or
killed should be respected equally and always, with regard to every human
being, including all unborn human beings, who are no less human than they
will be once they are gestated and born.
These three arguments lead to the conclusion that what is true for medical
professionals is true for all: no one should ever intentionally damage or
destroy the life and health of an unborn human being. Abortion, understood
as the intentional killing of an unborn human being, is always and
everywhere morally impermissible.
ABORTION AND PRIVACY
These arguments also make clear that abortion is not merely a private
matter. The last recourse of those who would defend abortion is to claim
that arguments against it are a matter of personal, often religious, beliefs,
not public or professional concern. This claim is almost never argued, but it
has a kind of axiomatic quality in contemporary culture, characterized as
that culture is by its emphasis on what philosopher Charles Taylor calls “the
ethics of authenticity”—the notion that what is most important in life is for
each person to become the self that that person authentically chooses to
become, based on each individual’s own lights and without the censure or
imposition of external standards. This culture gives rise to the PSM.
The key premises that we have drawn upon to assess the practice of
abortion, however—that human beings begin at fertilization and that all
human beings have the right to not be killed at will—are neither esoteric
nor a matter of religious revelation. Rather, these are claims of human
reason that are accessible to all. The first is a claim of science, the second a
claim of the moral law known by practical reason (natural law, the Tao).
That moral law makes it possible for the public to recognize and defend
human rights and to evaluate particular practices, as well as explicit policies
and laws, as to whether they are just or unjust.⁹
Abortion is a public matter in a further crucial sense. When medical
practitioners exclude from the scope of their concern the lives and health of
some human beings, that damages the practitioners’ publicly expressed
commitment to patients’ health. Similarly, when a polity excludes from the
scope of its legal concern the lives of some human beings within its legal
boundaries, that damages any publicly expressed commitment to justice and
equality. These commitments are the foundations of the medical and
political communities, respectively; to damage them is to damage public
trust in these communities. The widespread permission, acceptance, and
practice of abortion are thus public wrongs in the sense that they erode the
fabric of a public, whether that public is the profession of medicine or a
political state pursuing justice.
ABORTION AND INTENTION
We argued in the previous section that abortion, insofar as it involves
intentional killing, is morally wrong. But must abortion always involve
intentional killing? In chapter 5 we explained that it can be permissible to
allow a bad effect if that effect is not intended, provided that proportionate
reason exists for allowing it. This claim is essential for thinking about
several issues surrounding abortion.
In what follows, we briefly address a famous attempt by Judith Jarvis
Thomson to justify abortion by arguing that it need not involve intentional
killing. We argue that in most cases abortion does involve intentional killing
and that abortion for the sorts of reasons Thomson envisaged would be
wrongful even if the death of the unborn were not intended.
We then turn to discuss vital conflict cases, those in which one or both of
the lives of the mother and child are at mortal risk and in which one or both
will surely die unless a medical intervention is performed that results in the
loss of the unborn human being’s life.¹⁰ We look first at some cases in
which natural law theorists exhibit wide agreement, then consider cases in
which the judgment that the child’s death is a side effect remains
controverted.
THOMSON’S VIOLINIST
Philosopher Judith Jarvis Thomson has advanced perhaps the most famous
argument in defense of abortion.¹¹ Thomson begins by noting that much of
the debate surrounding abortion concerns whether the unborn human being
is a person. Those who oppose abortion, she writes, typically “spend most
of their time establishing that the fetus is a person, and hardly any time
explaining the step from there to the impermissibility of abortion.”¹²
Meanwhile, “those who defend abortion rely on the premise that the fetus is
not a person, but only a bit of tissue that will become a person at birth.”¹³ In
contrast, for the purposes of her argument, Thomson grants that the fetus is
a person, then asks whether abortion is indeed impermissible on that
assumption. This is one of the great innovations of her article, and one
reason it has gained such acclaim.
At this point, readers might note that we spent time not on the question of
personhood but rather on the question of whether the fetus is a human being
(a question elided in Thomson’s contrast of “person” with “bit of tissue”).
That the fetus is a human being we take to be a matter of settled science, but
one that also can be defended philosophically. Pro-choice thinkers such as
Peter Singer agree with us on this point, conceding that it is obscurantist to
deny that the fetus is a human being (What else would it be?). Unlike
Singer, however, we hold that it is wrong to intend the death of any human
being, whereas Singer and many others hold that those human beings who
do not possess certain qualities—the qualities of personhood—may be
killed justifiably.
Note, then, that with respect to bioethics, and particularly the question of
abortion, the language of personhood is typically invoked in order to
distinguish which, among all human beings, are those who do not deserve
(because they are not persons) the respect we generally owe to other human
beings, including the respect of not killing them. Our argument, then, unlike
those Thomson was aware of, does not start with the idea of “person” but,
in a sense, ends with it, for it follows from our conclusion that embryos and
fetuses are persons, meaning beings whose lives should not be intentionally
damaged or destroyed.
Thomson presents an argument for abortion that concedes this claim—that
fetuses, as human beings, should not be killed intentionally. To do so, she
presents the reader with the following scenario: You wake up to find you
have been abducted by the Society of Music Lovers and medically attached
to a famous violinist who is unconscious and ill. He needs the use of your
kidneys for nine months to survive his disease; if you detach yourself from
him, he will certainly die.
Thomson believes that the average reader will intuit that it would still be
permissible to detach yourself, and in the situation as described, we agree.
Thomson’s scenario is one in which the rule of double effect applies. Must
you, by detaching yourself, intend the death of the violinist? It seems not.
Rather, you might reasonably intend to avoid the burdens of attachment. Is
detaching yourself unfair? Not necessarily. In Thomson’s scenario, the
violinist has no real moral claim on you—you were abducted, after all—and
so it does not seem unfair for you to detach yourself, thus avoiding a nine-
month involuntary confinement forced on you by someone with no
connection to you.
But the great majority of elective abortions do not resemble this situation at
all. Like Ms. Parker, most women who seek abortions do so because they
do not want, or do not feel ready, to be mothers. However understandable
these desires are, in such cases the woman’s intention clearly includes the
death, not merely the “disconnection,” of the fetus, as the fetus must die in
order to prevent it from developing into a baby to whom the woman is the
mother. Indeed, while Thomson believes that her argument supports only
disconnection from (or, more realistically, expulsion of) the fetus, others
have argued that the constitutional right to abortion in the United States
entails a right to the death of the fetus lest the right to abortion be whittled
away by improvements in technology that make it possible to sustain
fetuses outside the womb at earlier and earlier stages of pregnancy or the
right be forfeited in cases of botched abortions that produce live births.¹⁴
Suppose, however, that some abortions are not like this. Imagine a woman
who would, if it were possible, readily permit her fetus to be removed to an
external form of life support and seeks detachment merely to avoid the
burdens of providing the fetus further “womb room” or sustenance. In such
a case, however uncommon, detaching the fetus would not involve
intentional killing, and the death of the unborn child would be a side effect.
Could such an abortion be morally permissible?
Not, we suggest, in the kinds of cases Thomson has in mind. Note first the
differences in the kind of relationship the reader has to the violinist
compared with the relationship Ms. Parker has to the fetus inside her. In the
former it may make sense to talk only of “the woman” and “the violinist,”
but in the latter it also makes sense to talk of “the mother” and “her child.”
The mother-child relationship is quite unlike the relationship between the
reader and the violinist in Thomson’s example, even when the mother did
not desire the relationship and even, as in the tragic cases of sexual
violence, when the relationship has been forced on her through another
person’s criminal actions. We are animal organisms, and mother and child
share a real biological relationship; because those biological beings are also
persons, the relationship is also personal, even if it is not desired.
We recognize that this claim will strike some as extreme, even offensive,
and we readily concede that a woman who seeks an abortion after suffering
sexual violence is less blameworthy than one who seeks an abortion after
sexual intercourse in which she freely engaged. We also concede that when
abortion is chosen to end a pregnancy that follows consensual sex, the man
often bears as much responsibility for the abortion as the woman—and, in
some cases, more.
The point here is not to assign blame but to clarify that, contrary to what
Thomson’s hypothetical would suggest, biological relationships can create
obligations, even if those obligations have not been accepted voluntarily. If
a young baby turns up on a man’s doorstep and he realizes the baby is his
biological daughter—perhaps the man had had a one-night stand and the
mother has abandoned the baby—biological paternity and the child’s
vulnerability create a real obligation to provide assistance to the baby, one
extending well beyond nine months. If the man knows that his biological
daughter will surely die without the food and shelter he is able to provide, it
seems to us profoundly unjust for him to refuse. The same would hold true
if an elderly man showed up on the doorstep of a young woman and
identified himself as her father, perhaps separated from her years before by
war or another circumstance for which he was not responsible. Children
never choose their biological parents, and yet it seems that children
nevertheless have obligations to their parents that they do not have to
others. Biological relations matter morally, even though they are not
chosen. Indeed, if Thomson’s violinist scenario were changed only a little—
if, say, the reader learns that the violinist is the woman’s long-lost child or
long-lost sibling, we doubt that the reader’s intuitions would be so solidly in
favor of her detaching from him; indeed, they might become solidly in
favor of the opposite.
In a moment, we will consider cases that differ further from Thomson’s
example because in them the mother’s life is in danger. But we conclude
here that, apart from such cases, it is typically unjust because unfair to
refuse life-sustaining aid to one who is closely related to us, particularly
when we can provide such aid and others cannot; and this unfairness is
particularly at odds with a mother’s unchosen vocational responsibilities. If
we would help our child in the doorstep scenario or in the violinist scenario
but not in the abortion scenario, it seems that our refusal to help in the
abortion case is unfair—motivated by an unreasonable prejudice against the
unborn. Thomson’s article, then, does not in fact grant the personhood of
the fetus, for it fails to treat the unborn with the respect we accord to all
those whose deaths we would neither intend nor accept as a side effect
without proportionate reason.
DOUBLE EFFECT AND LIFE-SAVING ABORTION
Having gone so far to critique the vast majority of abortions, we here argue
that in rare cases in which a mother’s life and health are gravely threatened,
medical practitioners sometimes can reasonably intervene to preserve the
mother’s life even when their intervention will inevitably cause the death of
the unborn child as a side effect. Such interventions, as we explain, neither
contradict a physician’s commitment to the patient’s health nor are they
ruled out by practical reason.
One paradigmatic such case concerns a pregnant woman with a cancerous
uterus, whose cancer must be addressed before delivery or the woman will
die and the child also will die. Is it permissible to perform a hysterectomy
on the woman, removing the cancerous uterus and with it the unborn, pre-
viable child, even though this inevitably will result in the child’s death? The
rule of double effect indicates that the answer is yes: the end of the surgery
is preserving the mother’s life; the means is the removal of her diseased
uterus. The bad effect, which it would be immoral to intend, is the death of
the unborn human being. Is there a proportionately good reason to accept
that effect? In this case, yes, clearly: both mother and child will die if the
operation is not performed. Thus no one is being privileged, much less
arbitrarily privileged, over another. The mother’s life is not judged more
important than the child’s; rather, her life is the only life that can be saved.
In this case, the Way of Medicine would approve of the hysterectomy.
What if the life of the mother could be preserved, or that of the child, but
not both? Some argue that the mother’s life should be preserved over the
child’s because the mother is the physician’s primary patient. To us this
conclusion does not seem obvious. A physician charged with caring for a
pregnant woman has, whether he recognizes it or not, two patients—two
vulnerable persons under his care whose health is at stake. Those persons
stand in somewhat different relationships to the physician, for only one can
communicate her wishes and decisions, agree to be the physician’s patient,
and so on. But, as in the case of a traffic accident that a doctor happens
upon, we think that the proximity of the vulnerable child and the exigency
of the child’s health-related needs—not to mention the child’s relatedness to
the physician’s obvious patient—both contribute, in conjunction with the
physician’s vocation, to the physician’s having obligations directly to the
child in addition to the child’s mother.
That being said, the woman, as the child’s mother, has substantial authority
to make decisions both for herself and for her child. She is the one in the
position to evaluate the options in light of her own vocation. Although in
principle either decision could be fair, her vocational commitments and
obligations give her reasons in light of which she can determine which
choice to make in this awful situation.¹⁵ In our view, therefore, the decision
as to whether the physician should strive to preserve her life or the life of
her child is the mother’s to make.
A salpingectomy for an ectopic pregnancy is another paradigmatic scenario
in which the Way of Medicine permits a lethal intervention. In such a case,
the embryo has implanted in the woman’s fallopian tube. Continued
pregnancy will inevitably lead to the death of the embryo, and it also can
threaten the life of the mother if the fallopian tube ruptures. In a
salpingectomy, the surgeon removes the portion of the fallopian tube that
contains the embryo. Again, the physician’s end is to preserve the mother’s
life and health; the means is removing the compromised segment of the
fallopian tube. Negative effects of this intervention include not only the
embryo’s death but also the risk of future infertility in the woman. This case
seems to straightforwardly satisfy the rule of double effect, along the same
lines as the case of the woman with a gravid but cancerous uterus.
Before turning to more contentious cases, let’s consider the definition of
“abortion.” Earlier we argued that it is always impermissible to
intentionally kill an unborn human being. We then, in response to Judith
Jarvis Thomson’s line of reasoning, argued that in the great majority of
cases it is also impermissible, because unfair, to accept the death of the
unborn child as a side effect of an intervention to end the state of
pregnancy. However, the two cases we have just described—those of the
pregnant woman with cancer in her uterus and the woman with an ectopic
pregnancy—both indicate that in some cases a physician can intervene to
preserve the mother’s life and health even when doing so will inevitably
cause the death of an unborn human being.
So we propose to define “abortion” not as any medical intervention that
results in the death of an unborn human being but rather as any act that
either intentionally or unjustly ends the life of an unborn human being. All
abortion so defined is morally impermissible, and likewise, no act is an
abortion that accepts the death of an unborn human being as the justifiable
side effect of an attempt to preserve the mother’s life.
CONTROVERSIAL CONFLICT CASES
In this section we briefly discuss three cases that continue to be
controversial among proponents of the Way of Medicine. Although we
cannot settle these cases definitively, we show how the controversy
surrounding them illustrates the two different approaches to intention that
we described in chapter 5. In each case, the debate concerns whether the
death of the unborn human being is intended or is a side effect.
The Phoenix Case
In 2009 a dispute arose concerning whether an attempt to save a mother’s
life was an abortion or a justified application of the rule of double effect.
The case occurred in Phoenix, Arizona, and the hospital in question
described it thus:
A woman in her 20s with a history of moderate but well-controlled
pulmonary hypertension found out she was pregnant. There was concern for
her health, because pregnancy with pulmonary hypertension carries a
serious risk of mortality. Because of the severity of her disease, the
woman’s risk of mortality was close to 50 percent. In November 2009, the
woman was admitted to St. Joseph’s Hospital and Medical Center with
worsening symptoms. Tests revealed that she now had life-threatening
pulmonary hypertension. The chart notes that she had been informed that
her risk of mortality was close to 100% if she continued the pregnancy. The
medical team contacted the Ethics Consult team for review. The
consultation team talked to several physicians and nurses as well as
reviewed the patient’s record. The patient and her family, her doctors, and
the Ethics Consult team agreed that the pregnancy could be terminated and
that it was appropriate since the goal was not to end the pregnancy but to
save the mother’s life.¹⁶
How does one analyze this case with respect to the intention of the mother
and her doctors? In chapter 5 we distinguished between two accounts of
intention. For one, what matters primarily is what is proposed and
undertaken from the standpoint of the agent who is acting. For the other,
external factors such as closeness bear on what an agent intends. In the first
account, from the standpoint of the mother and the physicians, the fetus’s
death is not the means by which the strain on her heart may be relieved; the
means, rather, is removal of the connection between her child and her body.
The placental connection to the fetus is putting inordinate strain on her
heart, thus gravely threatening her health and life, and removing that
connection is itself the action necessary to preserve her life. So, in this first
account, the death of the fetus is not intended. We still need to consider
whether there was proportionate reason to allow the death of the fetus as a
side effect and, in particular, whether allowing that death was fair given that
the child was going to die no matter what was done. We return to this
question shortly.
But first, consider the following analysis advanced by Fr. Nicanor
Austriaco, which is emblematic of the alternative account of intention:
When the doctors chose to remove the child’s placenta to save his mother’s
life, they necessarily also chose to kill him, because they were choosing to
remove a vital organ of an innocent human being in a manner that would
end his life. They chose to kill him in the same way that a Mayan priest
who chooses to remove a beating heart from a sacrificial victim to placate
the gods also chooses to kill him. Evil was done (the killing of the child) for
the sake of obtaining a good (the restoration of the health of the mother).¹⁷
On Austriaco’s understanding of intention, to choose to “remove a vital
organ” (the placenta) is choosing to kill, regardless of how things are
understood from the agent’s perspective. Accordingly, the question is
settled immediately: intentional killing is always wrong, so the doctors’
actions in the Phoenix case were unethical.
We disagree with Fr. Austriaco’s analysis. The death of the fetus
accomplished nothing for the mother or the physicians. Rather it was
entirely the detachment of the placenta that was sought, and then the
subsequent removal of the placental and fetal remains. We do not think it
accurate to say that “they necessarily also chose to kill [the fetus].” Rather,
they chose to detach the placenta, foreseeing and accepting that the fetus
would be killed as a side effect.
There remains the question of whether this decision was fair, and here we
think the answer is clear. If the death was not intended, the decision to end
the pregnancy was certainly fair, as otherwise both lives would have been
lost. The intervention did not privilege one life over another but merely
preserved one life instead of sacrificing both. We think it evident that the
intervention honored the Golden Rule—that a reasonable person, faced with
a scenario in which both the child and his mother would die soon if nothing
were done, but in which his mother’s life might be preserved by a procedure
that would result in his death, would affirm the intervention to preserve his
mother’s life. This is not unlike an awful scenario in which one rock
climber who has fallen is hanging tethered to another, and both will die
unless the tether is cut. If the agent-centered account of intention is correct,
and if neither the mother nor her doctors intended her baby’s death, the
placentectomy was not an abortion and was instead a properly health-
motivated intervention, albeit one with a tragic consequence.
Ectopic Complications
Among proponents of the Way of Medicine, similar disagreements have
persisted about how to address ectopic pregnancies. As we noted,
salpingectomy is universally supported, but questions have been raised
about two alternate interventions, salpingotomy and administration of the
drug methotrexate.
In a salpingotomy, a longitudinal incision is made in the fallopian tube, and
the embryo is flushed out using a suction-irrigator. Obstetricians have
generally preferred salpingotomy over salpingectomy because it has been
thought that salpingotomy would better preserve the woman’s fertility,
though that intuition has not been born out in clinical studies.¹⁸ Meanwhile,
the direct physical connection between the intervention and the embryo’s
death has convinced some that the latter must be intended as part of the
former. Certainly, the connection to the embryo’s death is not as indirect as
it is in a salpingectomy.
Directness or indirectness, however, has no necessary bearing on whether
an effect is intended or not. Indeed, in the first philosophical treatment of
double effect, Thomas Aquinas argued that lethal force could sometimes be
used in self-defense. To us, the use of a sword to fend off an attacker has a
similarly direct connection to the resulting injury or death the attacker
suffers.
Moreover, it seems clear that the embryo’s death is generally not part of the
mother’s or the physicians’ proposals. Rather, their proposals are to
preserve the mother’s health and life by removing the embryo from a place
where it threatens grave danger to the mother. While the embryo’s death is
indeed an inevitable consequence, it is not needed as a means; presumably,
if the physicians could move the embryo to the uterus without harm, they
would. If that is true, as long as there is a proportionate reason to accept the
death of the embryo, as there seems clearly to be on the same grounds we
discussed with respect to salpingectomy, a salpingotomy is permissible.
Finally, there is the question of treating an ectopic pregnancy with the drug
methotrexate. This drug inhibits cell division in the trophoblast, which is
the precursor to the placenta. In an ectopic pregnancy, the trophoblast cells
burrow into the cells of the fallopian tube, as they would into the
endometrial lining of the uterus in a healthy pregnancy. By preventing cell
division in the trophoblast, methotrexate prevents the embryo from
remaining attached to the fallopian tube; without maintaining this
attachment, the embryo dies.
Again one can see why proponents of a less agent-centered account of
intention conclude that the use of methotrexate involves intentional killing:
the drug inhibits cell division not only in the trophoblast but also in the
embryo as a whole. Moreover, the trophoblast is part of the embryo, so it
seems again that the intervention directly attacks the embryo even if the
agent aims to affect only the trophoblast.
On the other hand, from the agent’s perspective, it seems that the aim is to
preserve the mother’s health and the means is detachment, which is
achieved by inhibiting the trophoblast cells specifically. The overall lethal
effect is not part of the proposal and thus not intended.
We may seem to be splitting hairs, but a question looms here that is hard to
settle: when an intended effect is part of a larger whole that is caused in
order to bring about the effect, is that whole itself intended? Elizabeth
Anscombe raised this question in relation to a case in which the Allies
bombed Dutch dikes to flood the Zeelands and thereby kill German
soldiers. Many Zeelanders were also killed, and the question Anscombe
raised is this: were they killed as side effects of an effort that targeted only
the Germans, or were the Germans killed as part of an effort to kill
everyone by means of the flooding? With respect to the use of methotrexate
for ectopic pregnancy, is the loss of cell division throughout the embryo a
side effect of an effort to block such division only in the trophoblast, or
does the agent intend to inhibit the cell division of the embryo as a whole in
order to inhibit cell division in the trophoblast? If the latter, the agent seems
to make the embryo’s death the means to the embryo’s detachment rather
than accepting it as a side effect of that detachment. Then the use of
methotrexate appears to be an instance of a chemical rather than a surgical
abortion.¹⁹
CONCLUSION
As we noted at the outset of this chapter, we cannot do justice here to all of
the arguments for and against abortion. Instead, we have aimed to show,
first, that abortion not only falls outside the proper scope of the medical
profession but that it contradicts that profession’s commitment to never
intentionally damage or destroy the life and health of any human being. In
addition, we gave reasons for thinking that a stronger conclusion is true:
that no one should ever intend the death of an unborn human being, nor
should they accept such a death as the foreseen side effect of unjustly
refusing to give aid to an unborn human being. Finally, we showed that the
rule of double effect is essential to practical reasoning about hard cases:
cases in which one or both of the lives of a mother and her child will be lost
in the absence of an intervention that itself has lethal effects.
This concludes our treatment of medical ethics at the beginning of life. We
turn now to the practice of medicine and medical ethics at life’s end.
CHAPTER EIGHT
Medicine at the End of Life
Now let’s return to the story of Abe Anderson and look further into that of
Nora Garcia.
Abe has been found to have advanced cancer.
Nora has suffered a devastating stroke.
In this chapter we will examine the ethical questions that arise in caring for
patients with advanced illness or those who are at the end of life. Most
clinical ethics consultations are called to address such questions, which is
natural enough, given the two kinds of limits we face. First, we face the
limits imposed by human mortality. Aging happens; health declines
irrevocably. The health that can be restored is less than it once was. Losses
abound; death looms. These limits raise this question: how does one
appropriately pursue health when health is irreversibly diminishing?
Second, we face the related limits of medicine. Medicine cannot reverse
aging. It cannot overcome the fact that all of us will die, relatively soon. So
medicine’s efforts become more strenuous and burdensome in exchange for
less substantial gains. More is wagered, but less is accomplished. Leon
Kass memorably wrote, “Health is a mortal good, and . . . we are fragile
beings that must snap sooner or later, medicine or no medicine. To keep the
strings in tune, not to stretch them out of shape attempting to make them
last forever, is the doctor’s primary and proper goal.”¹
Since the advent of the mechanical ventilator, however, physicians, patients,
and family members have come to experience the default pathway for dying
in American healthcare precisely as a process of being stretched out of
shape by life-sustaining technology in a vain attempt to postpone death as
long as possible. Unfortunately, out of otherwise reasonable desires that
death and the suffering that accompanies it not be unreasonably prolonged,
some have moved to embrace death itself as one of the ends of medicine, as
if destroying the instrument were the best means of tuning the strings.
What would it look like merely to keep the strings in tune or at least in such
tune as is available? And why is destroying the life of a patient not a
solution to the problem of the patient’s strings being stretched out of shape?
In this chapter we address the first of these questions, and in chapter 9 the
second.
SEEKING THE HEALTH THAT IS POSSIBLE
Abe Anderson and his wife undergo in vitro fertilization, and two years
later they are the proud parents of twin girls. One day Abe’s wife notices
that his eyes look yellow. Abe returns to his doctor. Radiographic imaging
reveals a tumor in his pancreas, with multiple lesions in his liver. A
procedure is done to place a stent in Abe’s bile duct, and biopsies confirm
what everyone fears: he has metastatic pancreatic cancer.
What should the doctor suggest in the face of Abe’s diagnosis? How should
Abe discern a reasonable way forward? We have proposed that the end of
medicine is health; what could it mean to pursue the health of a patient
whose disease is incurable? What health-related options are available to
someone in Abe’s tragic but not uncommon situation?
For simplicity’s sake, suppose that Abe’s physician believes she can present
Abe with two options. We want to ask, first, are these options genuinely
permissible for a doctor vocationally committed to health, and second, how
should Abe deliberate about these options practically?
Option 1 is to undergo a regimen of chemotherapy. Clinical studies indicate
that patients like Abe who receive this regimen live only a month longer, on
average, and many die sooner than they otherwise would have, but about
one in five patients survive at least a year. Major side effects of this regimen
include nausea, vomiting, fatigue, anemia, and immune suppression.
Option 2 is to focus on palliation—treating Abe’s pain and other symptoms
as they arise and working to sustain his remaining health and function using
interventions that are not particularly burdensome, but forgoing further
cancer-directed treatment. Often a palliative approach is structured under
hospice care. Clinical studies indicate that patients like Abe who choose
Option 2 will live about as long, on average, as those who receive
chemotherapy. However, almost all such patients die within a year.
Consider how this decision would be framed under the provider of services
model (PSM). First, physicians and patients would consider the universe of
options that are technically possible, permitted by current law and
professional standards, and available in the patient’s context. The
conventional approach would not hold these options up against a specific
end or norm, such as the patient’s health. The patient and the clinician
would thus not be accountable to an objective standard, although they
would still have resources for discernment. They could apply the four
principles of bioethics—autonomy, beneficence, nonmaleficence, and
justice. Alternatively, they could try to put the known benefits and harms of
the two approaches onto some kind of scale to determine which course of
action would bring about the greatest good for the greatest number, or at
least bring about the greatest good for Abe.
Under the PSM, the resolution of the matter ultimately defaults to the
patient’s wishes. No one but the patient, after all, is in a position to weigh
all of these considerations against the subjective norm of the patient’s well-
being—the state of affairs that the patient judges to be most desirable, that
most aligns with the way the patient authentically chooses to live. In this
light, Abe might reasonably choose Option 1 because it would maximize
the likelihood of his being alive in a year, a state of affairs he highly values,
and because it would align with his identity as a “fighter”—someone who is
not going to roll over and surrender to cancer. His physician might go along
because she believes that treating the cancer aligns with the principle of
beneficence and that doing what Abe requests respects his autonomy.
Abe might choose Option 2 because he believes it would maximize the
likelihood that he could avoid pain and other symptoms or at least they
could be adequately treated. Being without pain is another state of affairs he
highly values, ensuring that he would have a decent quality of life and
could continue for as long as possible to do the things that make him who
he is. His physician might support this approach because it seems to align
with the principle of nonmaleficence and, again, to honor Abe’s autonomy.
Either way, the goal is for Abe to make a choice that is free, informed, and
authentic to his self-perception. A choice that meets these criteria would be
made ethically, irrespective of what is chosen.
To summarize, under the PSM the physician offers the range of legally
permitted and medically available options, and the patient autonomously
chooses the options that comport with his or her own subjective sense of
well-being.
Interestingly, the Way of Medicine offers guidance that seems to overlap
considerably with the PSM approach, although crucial differences
distinguish the two. In the first place, options and choices that seem
unmotivated by anything other than conventional expectations and
subjective preferences under the PSM are given objective guidance in the
Way of Medicine. Second, the objective norms that practitioners of the Way
of Medicine apply here, where the two approaches overlap, result in very
different guidance further down the line when patients are reaching for last-
resort options.
THE PHYSICIAN’S OPTIONS
The Way of Medicine begins with health and with the physician’s
orientation toward the health that still can be preserved and restored in the
patient. Abe’s dire situation calls for some reminders about what health is
and what it is not; practitioners must not lose this orientation. Health is not
the absence of disease. If it were, the good of health would no longer be
available to Abe, and his physician would have nothing more to do. Nor is
health a matter of black-and-white. Clearly Abe’s health will be forever
diminished by pancreatic cancer; speaking colloquially, we might say that
Abe will never again be healthy. Yet much health remains for Abe, and until
his last breath he will enjoy some measure of it, however diminished and
unsatisfactory.
Further, health is complex in its dimensions. Abe’s physician rightly has in
mind Abe’s health as a whole organism, given our definition of health as
“the well-working of the whole.” But the complexity of the whole means
that different dimensions of health are at stake in clinical decisions, and
pursuit of one dimension often has adverse consequences for another
dimension. In addition, health is a basic human good but not the only or
even the highest good. As such, at the outset we know that ignoring health
or certain dimensions of health makes sense under some conditions. Abe’s
physician needs to be mindful of these conditions.
The threshold question for a physician—the one that sets out the universe of
options to consider—is which, among the technically feasible courses of
action, are those plausibly conducive to the patient’s health? In this
framework, Option 1, the regimen of chemotherapy, can reasonably be
offered only insofar as it aims at and has some probability of preserving or
restoring the patient’s health. Does it?
With Option 1, there is no clear answer. If the chemotherapy would increase
by only 1 percent Abe’s probability of living for one year, the answer would
more obviously be no. If it increased that probability to 50 percent, that
answer might obviously be yes. But in the case as it is, Abe’s physician
must make use of her prudential medical judgment: does this regimen offer
a sufficiently realistic possibility of benefit that pursuing it would not be
pointless? If Abe’s physician believes a regimen is pointless, she does her
patient no real service by offering the option. The offer would waste her
patient’s time, money, and energy and would subject him to other negative
effects.
We think Abe’s physician could reasonably judge Option 1 a live option in
terms of its potential health benefits, but what about its harms: anemia and
immune suppression, not to mention nausea, vomiting, and fatigue? How
can Abe’s physician reasonably inflict these harms on Abe? How can she
cause harm to Abe’s health without contradicting her profession, and what
would give her sufficient reason for doing so?
According to the Way of Medicine, the physician should never intentionally
harm or destroy Abe’s health. Certain options are simply off the table. But
the rule of double effect teaches that Abe and his physician might
reasonably accept injuries to health or other goods when those injuries are
foreseen but unintended side effects of pursuing Abe’s health. As such,
Option 1 could be reasonable from the physician’s standpoint insofar as the
anemia, nausea, and so on were not part of her intention. Some observers
would argue that we dissimulate here, that it is nonsense to say that the
physician does not intend the immune suppression, nausea, and so on when
she knows with certainty that such harms result from a course of
chemotherapy. But a good physician might administer Option 1 with the
intention of destroying cancer cells and thereby improving the patient’s
health, not intending to cause nausea or anemia. That the latter are not part
of the physician’s intention is made clear by the observation that, for
example, if the patient does not experience nausea, the physician would not
consider herself to have failed (although she might wonder whether the
drug was administered correctly).
What about Option 2? How could it be reasonable for a physician—whose
commitment is to her patient’s health—to offer or participate in a palliative
approach to illness that seems to be detached from the pursuit of Abe’s
health? How could it be reasonable to forgo treatments that might extend
Abe’s life or, in other cases, even cure the patient? How can one hold, as
does the Way of Medicine, that palliative medicine is oriented toward rather
than abandoning patients’ health?
Thinking of palliation as oriented to health can certainly seem strange. Isn’t
palliative care pursued, after all, precisely when health can no longer be
restored, as in Abe’s case? This way of thinking, however, misidentifies
health as the absence of disease. One cannot capture all the dimensions of
Abe’s health by focusing only on his cancer. Nor is health the only good
that Abe has in view. So while Abe might, as we will see below, reasonably
choose not to pursue aggressive treatment of his cancer—perhaps because
of commitments to other basic goods—his physician can still maintain a
commitment to his health in dimensions other than the fact of his cancer.
Put another way, palliative medicine is indeed good medicine for a patient
like Abe, as we will address in greater detail below.
Authority manifests in Abe’s situation as follows: Under the PSM, authority
is vested, in the guise of patient autonomy, almost exclusively in the patient.
Abe has the authority to choose among the universe of options that are
technically feasible, legal (and not prohibited by professional policy), and
available in his context. The physician’s authority is rather limited. She is
authorized to refuse interventions that are technically infeasible, illegal, or
unavailable, and she retains the authority to refuse interventions that are
futile in relation to the patient’s goals. For example, the physician might
refuse a chemotherapy regimen that clinical trials do not support. By habit
and residual convention, at least to this point, physicians also generally
retain the authority to refuse to participate in interventions that cause major
direct harm to their patients’ health, particularly when the prospects of a
proportionate health benefit are doubtful. If Abe begins to suffer severe
immune suppression, the physician might stop his chemotherapy regimen,
even if Abe wants to continue. Although this authority of refusal continues
at present as a matter of convention, such refusals may not make sense
within the PSM insofar as they suggest an objective standard for harms and
benefits that the framework denies. Physicians’ refusals appear rather to be
a holdover—one of many—from the Way of Medicine that will increasingly
come to seem an arbitrary imposition of the physician’s judgment regarding
what the patient should value.
In the Way of Medicine the physician retains the authority to decide which
courses of action sufficiently conduce to the patient’s health and thereby
cohere with the medical profession. Perhaps Abe has read about an
experimental treatment that his physician believes poses too much risk to
health with too little prospect of benefit. She exercises her authority justly
when she refuses to offer such treatment. Recall, however, that the Way of
Medicine does not limit physicians to one course of action that maximizes
health. Among the options plausibly conducive to the patient’s health, the
physician has good reason to recommend the one that she believes is best,
all things considered, while taking into account the patient’s input.
Typically no one “best” option is available, however, even in terms of
health outcomes, so the patient has the authority to decide among the
physician’s proposals. A physician can be both too accommodating,
cooperating in medical practices that are not congruent with her
commitment to health, and too scrupulous, mandating the course of action
that the physician believes is best rather than offering patients a choice
among reasonable options.
THE PATIENT’S OPTIONS
We can’t forget the patient’s perspective. How should Abe think of the
options his physician has presented? Our answer consolidates much that we
have already discussed and introduces two terms that help us to further
explain the Way of Medicine.
The starting point for Abe’s deliberations is that he should not intentionally
damage or destroy any basic good, including the good of life and health.
Any choice he makes among the options presented to him, however, will
result in some damage to the basic good of health. Option 1 risks an earlier
death and will cause Abe to suffer the negative side effects of
chemotherapy. Option 2 will forego the opportunity to potentially prolong
his life and advance his health, even if only temporarily.
In light of the information available to him, Abe must determine whether he
can reasonably pursue the associated benefits and accept the associated
burdens of these options. He must ask, in other words, whether the benefits
he would seek are proportionate to the burdens he must accept, or,
alternatively, whether the harms he would avoid are proportionate to the
benefits he must forego. This familiar practical scenario requires Abe to
apply the rule of double effect. If Abe chooses uprightly, the negative
consequences of his choices will always be side effects.
In making clinical choices, patients like Abe face burdens that extend
beyond negative effects on health, including losses of time and money, as
well as losses of other opportunities. The patient also may experience
emotional aversions and repugnances toward an intervention, if, for
example, it leads to hair loss, fatigue, incontinence, or impotence. Abe must
consider all of these factors as he weighs his options, but by what standard
is he to evaluate them?
The fitting standard in our view is his vocation. Abe is a husband and a
parent of two small girls. His life situation is considerably different from,
say, that of Mrs. Garcia, an elderly woman whose situation we consider
later in the chapter. Abe has work obligations and debts. Perhaps he is
alienated from certain friends or family members. Maybe he is a religious
man, or perhaps he has let his religious life drift and feels estranged from
God. All these considerations must be brought to bear on his options to
determine which best fit his range of vocational commitments and
responsibilities.
Sometimes a patient will judge all of the treatment options compatible with
his or her station in life. In that case, in a sense, not much hangs on the
patient’s choice. But in many cases, some treatment options are ruled out as
incompatible with the patient’s vocation. Abe might, for example, judge
that for him the benefits of Option 1 are simply not proportionate to its
burdens. If so, we could say, using language traditional to the Way of
Medicine, that for him Option 1 is extraordinary. Those options that he
judges acceptable, in contrast, we can call ordinary. An extraordinary
treatment should not be chosen; an ordinary treatment may be and
sometimes must be chosen—if, for example, it is required by his vocation.
Some proponents of the Way of Medicine might object that our view here
seems like a version of the PSM, with its emphasis on patient choice, well-
being, and authenticity. We disagree. Although patient vocation is a relative
standard, it is not subjective. Presuming that he is clear-thinking and
reasonable, Abe uniquely understands his own vocation, and he forms his
judgments of what is ordinary and extraordinary in relation to that vocation.
Moreover, judging in accordance with one’s vocation is judging
authentically and autonomously, but Abe’s judging autonomously is not
sufficient for moral rightness, for Abe can judge wrongly that some option
is consistent with, called for by, or incompatible with his vocation.
Consider, for example, that the palliative option offers him the most quality
time with his family and the clearest mind with which to face his impending
death. Perhaps it will also be too financially and emotionally taxing for his
young family to accompany Abe on the path of chemotherapy, especially
when the benefits are so tenuous. So let us suppose that Abe, consistent
with his vocation, chooses the palliative care option. Making such a choice
requires some real virtues: wisdom, to recognize that it is the right choice,
and courage, to face the hard truth that he will likely be dead within a short
period of time. Virtue being always in short supply, Abe will face abundant
temptations to choose something that (we are stipulating) offers only a false
hope and only the appearance of fighting. That Abe has the authority to
make such a choice does not make his choice right. Even here, despite
apparent similarities, the Way of Medicine differs fundamentally from the
PSM.
THE RELIEF OF SUFFERING
Before going further, let’s return to a question raised by Option 2, the
prospect of a palliative approach to Abe’s illness. Palliative medicine treats
pain and other symptoms, thereby reducing suffering. What does reducing
suffering have to do with medicine—that is, with the patient’s health?
As mentioned earlier, by forgoing medical interventions that are
burdensome and time-consuming, a palliative approach leaves more room
for a patient to pursue other worthy goods—whether work, play, worship,
or simply putting one’s affairs in order before dying. In this sense, a
palliative approach is justified insofar as it avoids the mistake of treating
health as if it were the only or the highest good. Palliative medicine goes
further, of course, by treating pain and other causes of suffering.
But this key objection remains: the notion that palliative medicine aims at
health seems counterintuitive, because it seems that we deploy palliative
medicine when health can no longer be restored, when diseases are
incurable. This intuitive way of thinking, we propose, misunderstands
health as well as the practices of palliative medicine. Again, health is not
merely the absence of disease. It is, as Leon Kass put it, the “well-working
of the organism as a whole,” manifest in the activity of the body “in
accordance with its specific excellences.” Kass pointed to a squirrel to
illustrate health. A squirrel’s health is displayed in its characteristic
activities of well-working, such as burying nuts, chattering, and climbing
trees. The characteristic activities of humans are more varied, of course, and
so therefore are their expressions of health, but such expressions certainly
include the capacity to eat and digest food without vomiting it up, to move
one’s bowels, to sit or lie or walk without wracking pain, and to stay awake
and fall asleep at the proper times. Palliative medicine cannot return Abe to
the state of health he had before his diagnosis, but if it helps him go from a
state of nausea, constipation, insomnia, and wracking pain to one in which
he is able to tolerate food, move his bowels, sleep six hours at night, and
move around free of debilitating pain, palliative medicine will have
contributed to Abe’s health. These sorts of contributions to health make it
possible for Abe to pursue other goods still available to him.
Here the distinction between the PSM and the Way of Medicine begins to
have practical and not just theoretical consequences. Palliating disabling
symptoms with an eye to preserving and restoring a measure of health
differs fundamentally from palliating symptoms without respect to whether
doing so will restore health. Physicians should respect this distinction,
embracing the former practices of palliation and resisting the latter.
The PSM, however, treats this distinction as clinically and ethically
insignificant, urging pursuit only of that state of affairs that the patient
values or desires. By this standard, only coldhearted and unreasonable
doctors would refuse interventions that would end a patient’s suffering
simply because those interventions might contradict medicine’s traditional
orientation to health. What good does this narrow focus on health do for a
patient dying of cancer?
In the environment of the PSM, “palliative care” has come to be cast as a
broader, more holistic, more comprehensive form of professionalized care
than mere medicine can offer. In effect, rather than being an essential
practice within medicine, palliative care becomes an alternative and rival to
medicine, with more expansive goals. For example, the World Health
Organization defines “palliative care” as “an approach that improves the
quality of life of patients and their families facing the problems associated
with life-threatening illness through the prevention and relief of suffering
by means of early identification and impeccable assessment and treatment
of pain and other problems, physical, psychosocial, and spiritual.”²
This formulation gives palliative care a seemingly boundless scope of
activity. What problems, after all, are excluded from the categories of
physical, psychosocial, and spiritual? In this formulation, the goal is not
restoring health per se, but rather relieving suffering and improving a
patient’s quality of life. That goal is to be achieved through assessment and
treatment—concepts that resonate with the vocabulary of medicine—yet
neither suffering nor quality of life is necessarily related to health.
When efforts to relieve suffering and improve quality of life become
unhinged from the goals of preserving and restoring health, palliative
practitioners begin to see all forms of suffering as conditions that call for
treatment, including existential suffering. Furthermore, because palliative
care is committed to maximizing patient control, and because only the
sufferer can authoritatively assess suffering and quality of life, palliative
care practitioners trade clinical judgment oriented to the patient’s health for
the direction given by patient preferences. Indeed, palliative professionals
are often encouraged to relieve conditions on the basis of the patient’s
considering the condition “unacceptable” or “intolerable,” setting aside the
physician’s judgment regarding how the condition or its treatment is health-
related.³
Ultimately, in order to minimize suffering and maximize quality of life, and
to do so according to patients’ values, physicians come to consider death
itself, albeit a “good death,” as one of their goals. The National Hospice and
Palliative Care Organization describes “hospice” as follows: “Hospice
affirms the concept of palliative care as an intensive program that enhances
comfort and promotes the quality of life for individuals and their families.
When cure is no longer possible, hospice recognizes that a peaceful and
comfortable death is an essential goal of health care.”⁴ In this formulation,
palliative care shifts from relieving disabling symptoms so that patients can
live as well as possible in the face of death to treating unwanted symptoms
so that patients can die comfortably. It shifts from helping patients who are
dying to helping patients to die.
No wonder that recent years have witnessed a groundswell of support for
“last-resort options” in palliative care, including physicians’ helping their
patients to die via suicide and euthanasia. These last-resort options are the
focus of chapter 9.
THE LOSS OF DECISION-MAKING CAPACITY
Nora Garcia is an eighty-year-old woman with a history of diabetes, high
blood pressure, and coronary artery disease. At the encouragement of her
geriatrician, Mrs. Garcia wrote a living will in which she stated that if she
were in an irreversible coma, she would not want to be kept alive. She also
told her physician in a conversation that he documented that she never
wanted to be stuck on a breathing machine. “Just let me go,” she said. One
day Mrs. Garcia develops a fever, chills, cough, breathlessness, and
confusion. By the time an ambulance delivers her to the local emergency
room, she is found to be on the brink of respiratory failure from pneumonia.
Mrs. Garcia’s case brings to light the common phenomenon of patients who
are not able to make medical decisions for themselves. Young children do
not have the capacity to make their own medical decisions, and even older
children, for the most part, lack authority under the law to make medical
decisions. Adults, however, are expected to be self-determining, and as
people age many fear that they will be treated in ways they do not want—
either receiving more medical interventions than they desire in the default
pathway for technological medicine or receiving less medical support than
they believe they deserve. In his best-selling book Being Mortal, physician-
author Atul Gawande lamented the fact that despite handwringing all
around, patients continue to suffer and die in ways that depart from what
they say they would want, and contemporary medicine bears much of the
blame.⁵
The problem is not that patients are receiving medical interventions that
they actively refuse. Rather, the default pathway moves people inexorably
toward life-sustaining technology that, when people are in better health,
many would not imagine wanting. When people lose the capacity to make
decisions for themselves, they often remain on that default pathway,
continuing to receive interventions that they did not desire when healthy,
and still would not desire.
The PSM has sought to address this problem by shoring up patients’
autonomy, ensuring that medical care at the end of life accords more fully
with patients’ wishes. The primary mechanism for bolstering patients’
autonomy, and the one that has received the most public attention and
encouragement, is advance directives. Advance directives permit patients to
specify, in writing, what kinds of medical treatment they would want if they
were to suffer injuries or other health losses in the future. A living will
(which Mrs. Garcia had) sets out in writing what kind of medical treatments
one would want. Increasingly, physician orders for life-sustaining treatment
(POLST) are used to specify these wishes and give them authority within
health care. A durable power of attorney for health care (DPOAHC)
specifies who is authorized to make health care decisions for the patient if
the patient cannot make decisions for himself. Different advance directives
carry different levels of legal authority, depending partly on where the
patient lives, but all of them become active when a patient loses decisional
capacity. In theory, advance directives ensure that patients’ autonomy is
respected when patients cannot exercise that autonomy. In practice, advance
directives help to mitigate the pattern that Gawande and others have
observed, in which patients who lose decisional capacity cannot get off the
train that leads to unwanted and unhelpful medical interventions.
A number of criticisms have been raised regarding advance directives. The
first is that they do not genuinely protect or further autonomy. Mrs. Garcia,
when she wrote her living will, could not have anticipated the particular
situation in which she is now, and now that she is in this situation, she does
not have any autonomy. She still deserves respect, but her autonomy cannot
command our respect when her illness has removed that autonomy.
The emergency room physicians face an urgent question: should they
intubate Ms. Garcia to support her breathing while they give her fluids,
antibiotics, and other ministrations in hopes of restoring her to the health
she had before this infection? Or should they forgo the ventilator in light of
her statement that she would not want to be kept alive on a breathing
machine, knowing that without the ventilator she likely will not survive the
next twenty-four hours?
The PSM emphasizes the subjective norm: what would she have wanted?
The problem is that her physicians cannot know, because Mrs. Garcia
herself could not know, what she would want in this particular situation.
She certainly didn’t envisage this scenario when she wrote her living will.
With an unclear advance directive—and most living wills are similarly
unclear—physicians typically turn to duly authorized surrogate decision-
makers. While we address surrogates in a moment, let’s assume at this point
in the story that no such surrogates are available. In the conventional
approach, in light of uncertainty about what the patient would have wanted,
the physicians might do what most people want them to do in such cases—
that is, what people who have the capacity to choose typically choose: they
would intubate Mrs. Garcia to see if they could turn her illness around.
Such decisions are sometimes justified on the grounds that they restore the
patient to a state in which she can make a more considered, authentically
autonomous, choice. Dying, of course, cuts off all possibilities of future
autonomy.
On the Way of Medicine, Mrs. Garcia’s physicians have good reason to act
expeditiously to maintain the health that can be preserved using reasonable
means. This aligns with the constitutive purpose of medicine—a
predisposition to preserve health when possible. This disposition reasonably
accepts that health is a basic good for an eightyyear-old, just as for a
twenty-five-year-old; age can limit what health is possible but not the
goodness of health itself.
As we have stressed, health is not the only good, and actions available to
restore health have limits. Therefore, physicians need not do everything
possible to keep Mrs. Garcia alive, as if there were no other goods at stake,
and they need not do anything that is clearly either excessively burdensome
or unlikely to preserve or restore a significant measure of health. These
judgments are always context-dependent and require the physicians’
prudence. What would be reasonable in an average US city may not be
reasonable in a remote part of a developing country. And age matters
insofar as the health of an eighty-year-old is more tenuous and attenuated,
all else being equal, than that of a twenty-five-year-old.
We are not claiming that patients lose the authority to refuse medical
interventions—even those interventions that have great promise for
restoring health. If Mrs. Garcia had stated clearly that she was never to be
intubated, period, her physicians should decline to intubate her as a matter
of respect for the patient’s authority to make such decisions prospectively;
her decision-making authority can be respected, even if she has no
autonomy to respect. The patient’s authority is all the more in view if he or
she has taken some legal step to give that refusal force and indicate that the
decision is a considered one.
Because patients cannot anticipate every contingency, however, living wills
are generally less useful than are DPOAHCs. Unlike living wills,
DPOAHCs allow a patient to delegate authority for future decision-making
to a person the patient trusts. Even if the objective is to secure decisions that
the patient would have made if she were able to make them for herself, the
DPOAHC is preferable insofar as the patient can have in-depth discussions
with her authorized surrogate and give the surrogate the flexibility to fit a
future decision to the complexity of the patient’s story and the details of the
specific clinical situation. In any case, if an advance directive does not
unambiguously address the clinical question at stake, physicians are taught
to use the second procedural mechanism: surrogate decision-makers.
SURROGATE DECISION-MAKING
The physicians intubate Nora Garcia. After a rocky course of three days,
she is taken off the ventilator. She is very weak but improving slowly. The
next morning, she is found unresponsive in bed. An urgent CT scan of her
head finds a large hemorrhagic stroke. The doctors go to Mrs. Garcia’s
three grown children, who have now gathered, in order to have an urgent
family conference and decide what to do next.
When a patient is incapacitated, someone must have the authority to make
medical decisions for her. It seems reasonable that such authority resides
with the one to whom the patient has explicitly granted it if the patient has a
durable power of attorney for healthcare or, in the absence of such explicit
declaration, to those closest to the patient: her spouse, adult children, and so
on. But what standard should these surrogate decision-makers use in
exercising their authority on Mrs. Garcia’s behalf?
With its singular emphasis on patient autonomy, the PSM has come to
affirm what is called the substituted judgment standard. Out of respect for
patient autonomy, physicians are taught to approach the legal surrogate or
surrogates—in this case, Mrs. Garcia’s children—to explain the situation
accurately, including the options that are technically feasible, legal, and
available, and to encourage the surrogates to make the choice that the
patient would make if she were able to choose. The physician might say,
“The question is not what you think is best or what we might think is best.
The question is this: what would she have wanted?”
The substituted judgment standard has several problems. First, substituted
judgment, in such cases, seems to sustain a façade of respecting autonomy
that both hides and distracts clinicians and surrogates away from the actual
question faced: all things considered, what is a fitting way to care for this
patient? One cannot respect what does not exist, and Mrs. Garcia does not
possess autonomy in her state. Rather, she is utterly dependent on those
who would care for her. Moreover, to divine what she would have chosen if
she could have chosen for herself is an exercise fraught with uncertainty.
Researchers have found that close family members, including spouses, are
notoriously inaccurate in predicting what their loved ones would want in
prospective clinical situations.⁶
A final problem with the substituted judgment standard is that it divests
physicians of a responsibility that they are obligated to exercise. Because of
the subjectivity of what the patient would have chosen if she could have
chosen for herself, the substituted judgment standard puts physicians in a
passive role of merely giving information and options, deferring to the
surrogates to make an informed choice. The physicians’ primary aim as
healthcare professionals, however, is not to find what the patient would
choose if she could do so. Rather, the physicians’ aim is to find a way to
preserve and restore the health of the patient that still can be reasonably
preserved or restored and to do so in a way that respects the patient’s
authority to give consent only to those proposals that fit her vocation.
Although the patient’s authority has moved to surrogate decisionmakers, the
physicians ought not assume a passive posture. They should listen to and
consider the surrogates’ statements about the patient’s vocation—how she
lived, what her obligations are, what she loved, what they think she would
encourage them to choose if she could—and, as we will see, the surrogates’
statements about their own vocations. The physicians listen in order to
propose courses of action that they believe align with the patient’s health
and vocation in light of this information.
The physicians should not by default encourage the family to “do
everything.” Indeed, in many cases the physicians can state, as the
Hippocratic tradition suggested long ago,⁷ that medicine has little left to
offer other than solidarity and basic care. Health is a good that cannot be
preserved forever, and in Mrs. Garcia’s representative case, the patient’s
surrogates might reasonably focus on other goods. The primary point is that
when a patient cannot exercise her authority to give consent for medical
interventions, that authority shifts to the patient’s surrogates, but the
structure of the physician’s discernment remains the same: the goal is to
find a course of action that aligns with the physicians’ orientation to the
patient’s health while remaining open to other basic human goods and the
relevant truths about the patient’s vocation.
Yet another question arises here: whose vocation is to guide the
surrogate(s)’ decision-making? The answer is that the surrogates’ vocations
now provide the relevant standard. Thus our view not only differs sharply
from the substituted judgment standard but also differs somewhat from the
best-interest standard. According to the latter, surrogates should judge and
act in accordance with what is objectively best (often identified as in the
“medical best interest”) for the patient. That standard is superior to the
substituted judgment standard insofar as it reflects the truth that surrogate
decision-makers are charged to care for the ill and incapacitated patient,
making the patient’s welfare central to their consideration.
But surrogates have other concerns and other vocational commitments.
They may have children or spouses who depend on them. They may have
jobs to do and bills to pay. Surrogates can’t abandon these. Accordingly, the
terms discussed earlier—extraordinary and ordinary burdens and treatments
—become apt for the surrogates’ consideration. They are faced with options
whose benefits and burdens bear not only on the patient but also on the
surrogates themselves. Which interventions are ordinary and which are
extraordinary now has to be determined in light of the surrogates’ vocations
—vocations that include but are not limited to obligations to care for the
loved one in question.
INTENTION AND PROPORTIONALITY: A CASE STUDY
Abe Anderson opts for chemotherapy, planning to receive an infusion
biweekly for three months. Six weeks into this plan, repeat radiographic
imaging reveals that his tumors have grown despite treatment. Meanwhile,
he has lost thirty pounds and is starting to have severe abdominal and back
pain. Vicodin no longer relieves the pain, and Abe’s doctor recommends
scheduled doses of morphine. Abe’s wife worries about his being sedated
and about addiction to opioids.
How can Abe’s physician reasonably prescribe morphine in this case, when
she knows that doing so likely will lead to her patient’s physiological
dependence on morphine? Once again, we must advert to the rule of double
effect. Administering morphine has good effects—relief of pain—and bad
effects: constipation, sedation, dependence, and more. What makes the
physician’s action reasonable, according to that rule, is that she intends only
the good effects—in this case, the relief of Abe’s health-diminishing pain—
and that proportionality rests between the expected goods and harms. This
judgment of proportionality is not a matter of looking for one choice that
maximizes the net goods; no such choice can be known due to the goods’
incommensurability. It is a matter of considering the gravity of the goods
and harms at stake.
For example, if Mr. Anderson’s pain were minor, the physician would have
less reason to administer morphine. Proportionality also governs dosing:
physicians need not be squeamish about giving adequate pain relief, but
they are prevented from giving dosages that far exceed what one might
reasonably expect to relieve Mr. Anderson’s pain.
In this case, however, Abe’s pain is serious. Given that he has relatively
little time left to live, the risk of dependency does not seem as significant as
it might otherwise. So it seems reasonable to prescribe him morphine to
address his pain, provided that the side effects of constipation and sedation
are acceptable to him.
Over the next two weeks, Abe Anderson grows steadily weaker and sleepier,
often remaining in a state of somnolence. His wife wonders if the doctors
are overmedicating him.
Mrs. Anderson’s question points to the difference the Way of Medicine
makes. In the PSM, her concern prompts a question: what does Mr.
Anderson really want, or what would he choose if he could choose for
himself? If Abe’s current experience suggests that the morphine dosing is
not hitting the right balance, his doctors can adjust the medication
according to his desires. In the PSM, whether the physicians are disposed to
increase or decrease the dosing in this case depends entirely on the patient’s
wishes. Indeed, family members often ask that medication doses be
increased to preclude any possibility of the patient’s suffering.
The Way of Medicine, in contrast, returns once more to the norm of Mr.
Anderson’s health, with the rule of double effect helping the physicians stay
on track. Is the morphine achieving the relief of health-diminishing pain,
and is it doing so in a way that is proportionate to the adverse side effects?
Can the former be achieved in a way that does not bring as much of the
latter? These questions require the physicians’ clinical judgment, which
changes when circumstances change. For example, the effects of sedation
that seemed minor when accepted as a consequence of relieving severe pain
may seem more consequential when they are the consequence of moving
from adequately relieved to completely relieved pain. Accepting some level
of discomfort might be reasonable in order for Abe to maintain some degree
of consciousness, if doing so allows him to interact with his family and to
prepare himself for death. On the other hand, the sedation that was a heavy
burden when it kept Mr. Anderson from putting his affairs in order may
become a minor burden when he is actively dying.
Critically, Abe’s physician rightly limits herself to those actions that are
congruent with her commitment to her patient’s health. She would be
reticent, for example, to push the morphine dose high enough to render Mr.
Anderson unconscious, even though by so doing she could prevent any
further suffering. But she would also be reticent to watch her patient writhe
in agony while abstemiously titrating up the dosing in tiny intervals out of
concern for going too high. Finding the right practice here requires
judgment, which is gained through long years of experience in pursuing
patients’ health while respecting the requirements of practical reason.
Nora Garcia’s children were conflicted when her physicians asked them to
decide whether she should be intubated or not. In the context of their
uncertainty, the physicians intubated Mrs. Garcia. Three weeks later, she
coughs when her airway is suctioned, but she still has not recovered enough
to respond meaningfully to voice or touch. She receives ventilator support
via a tracheostomy and nutrition via a feeding tube inserted through her
abdominal wall. At this point, her three children together come to the
physicians, saying, “We had hoped she would recover, but she has not. She
would never have wanted to continue like this.” The children ask that the
ventilator be discontinued. “Just keep her comfortable,” they say.
In the PSM, the physician’s obligations in regard to removing the ventilator
are straightforward. The law allows life-sustaining technology to be
discontinued; the duly appointed surrogates are requesting that it be
discontinued; and, moreover, they are doing so according to the substituted
judgment standard—they are making the request that they believe Mrs.
Garcia would make if she were able. To make sure the surrogates’ choice is
informed, the physicians should tell the surrogates what they expect will
happen as a result of discontinuing the ventilator, but then the physicians
must do what is requested.
An additional issue arises: how to keep Mrs. Garcia comfortable when and
after the ventilator is removed. Should narcotics and sedatives be given
prospectively to reduce the chance that she will experience breathlessness
and subsequent distress in the short time she is expected to live after life
support is withdrawn? If so, what norms guide the dosing of such
medications? Again, the answer is easy in the PSM: the norm is to
minimize suffering and maximize quality of life according to the wishes of
the patient or her surrogates. Therefore, after explaining to the family how
the drugs work, the physicians are obligated to give a dosage that meets the
family’s expectations for their loved one’s comfort. That dosage may be
quite disproportionate to the discomfort the physicians expect their patient
to experience if the surrogate decision-makers’ primary concern is
minimizing the possibility of any suffering.
Here the PSM and the Way of Medicine again overlap somewhat, despite
their different starting points. In the Way of Medicine, the first question is
how can removal of the ventilator be consistent with the physician’s
commitment to the patient’s health? The second is how is removal of the
ventilator consistent with the requirements of practical reason?
Mrs. Garcia’s physicians are confident that she will die shortly after the
ventilator is removed. How can anyone, much less a physician, remove the
ventilator knowing that the patient will die as a result? Once more, guidance
comes from the rule of double effect. The physician’s commitment is to
seek to preserve and restore his patient’s health using reasonable means,
insofar as the patient grants the physician the authority to do so. Keeping
Mrs. Garcia on the ventilator provides at least a modicum of her health
insofar as it maintains her life, and maintaining her life allows for further
steps to be taken to improve her health, even if such steps do not hold much
promise in her case. Thus keeping Mrs. Garcia on the ventilator can be
reasonable as medicine.
But the ventilator’s contribution to Mrs. Garcia’s health, while real, is also
relatively minor. In her case, use of the ventilator does not make possible
further interventions to recover her lost health. Indeed, while medical
technology can keep her alive indefinitely, little to no prospect remains for
further healing. Moreover, the ventilator brings significant burdens: it is
expensive; it requires Mrs. Garcia to stay in an intensive care unit; and it is
relatively intrusive to her body, obstructing certain natural pathways of
human interaction between her caregivers and her.
While Mrs. Garcia’s physicians have some reason to maintain ventilator
support, they should also respect the health-related limits of doing so, and
the fact that her surrogates might reasonably judge that the burdens of
continuing ventilator support are disproportionate to the benefits. Those
surrogates can consistently treat Mrs. Garcia’s life and health as goods
while also judging that the ventilator should be removed in order to avoid
the burdens associated with it—expense, intrusiveness, and so on. They can
and should make that judgment in light of their own vocational
commitments, which might include honoring what they believe their mother
would have wanted—to end her days in the personal company of her loved
ones rather than in the impersonal company of machines.
In choosing to discontinue the ventilator, neither the surrogates nor the
physicians need to aim at the patient’s death. The surrogates can choose to
avoid certain burdens and to pursue a certain kind of human and personal
environment for their remaining time with Mrs. Garcia, aware that death
will likely be hastened as a side effect of seeking those benefits (including
avoiding those burdens). The physicians can accommodate the surrogates’
choice either because they share their intentions or if for some reason they
disagree with the surrogates’ judgment, because they intend to honor the
surrogates’ legitimate authority. In neither case do the physicians intend
Mrs. Garcia’s death either as a means or as an end. The surrogates and the
physicians can act reasonably here in discontinuing the use of Mrs. Garcia’s
ventilator.
Of course, different circumstances would affect our judgment. Imagine, for
example, that with two weeks more mechanical ventilation, Mrs. Garcia
would likely return to the health she enjoyed before she fell ill. Then the
burdens of mechanical ventilation for two weeks would not appear
disproportionate to its anticipated benefits. The ventilator would be seen as
ordinary treatment, and discontinuing it would be unethical. But even these
judgments depend on considerations over which the surrogates have
authority. The Way of Medicine respects that authority, allowing the
physician to cooperate with an action that the physician would not choose
herself.
Furthermore, what is true of the physicians relative to the surrogates is true
of both relative to the patient. If Mrs. Garcia were to recover decisional
capacity, she would have authority to ask that the ventilator be discontinued
even if it was thought that only two weeks more of ventilation were needed
to bridge her movement to a promising new treatment. That decision might
be wrongful, and her family and physicians should voice their concerns, but
the competent patient’s authority to refuse medical interventions is almost
absolute. Surrogates and physicians can intend to honor that authority while
accepting as side effects the consequences of a patient’s wrongful choice.
Surrogates’ authority is more constrained than patients’ authority.
Traditionally, surrogates’ decisions have been required to meet what has
been called a reasonable person standard. If a surrogate makes a request that
no reasonable person would choose (for example, removal of a ventilator
right after a major surgery, before the patient has had a chance for
anesthesia to wear off), the request will exceed the surrogates’ authority and
physicians may refuse it.
Let’s now return to the question of Mrs. Garcia’s comfort when the
ventilator is withdrawn. The physicians’ goals must remain tethered to the
norm of the patient’s health and subject to the questions of intention and
proportionality. That the patient will die soon does not justify setting these
considerations aside, though neither does the physicians’ commitment to
health mean that they must be tentative in administering medications to
relieve breathlessness. Patients who die of respiratory failure often appear
to experience profound distress from breathlessness, gasping for air as if
drowning. Such a state is not one of health. Relieving such a state would
seem to be an act required of healthcare professionals.
So a physician administers medication to mitigate breathlessness. Here we
note a story from the clinical experience of one of the authors. Dr. Curlin
was caring for a patient on a general medical service during training. The
patient, an elderly woman, had suffered a devastating stroke, very much like
the one Mrs. Garcia suffered, but instead of placing a tracheostomy, the
family asked that the ventilator be withdrawn, recognizing that the patient
would die. The patient was moved to a private room on the general medical
floor, where her family could be present while the ventilator was
withdrawn. When evaluating the patient, Dr. Curlin observed no
spontaneous respirations and no response to painful stimuli. He asked the
nurse to have a couple of doses of morphine available should the patient
appear to be suffering breathlessness or distress as she died. After the
ventilator was withdrawn, the patient did not breathe for more than a
minute. Then she began to gasp. She grimaced, and sweat broke out on her
brow. Her chest heaved, as if she was struggling to breathe but could not.
Dr. Curlin called for the morphine to be administered, but in the five
minutes it took for the nurse to access the IV and deliver the medication, the
patient had died.
This was poor medicine. Dr. Curlin should have anticipated the possibility,
even probability, that the patient would have a residual drive to breathe.
Knowing that she would likely not be able to breathe sufficiently to survive,
he should have given a dose of medication in advance that would have
relieved her air hunger, and then had medicine available to be administered
immediately, titrated to signs of such distress. Such an act would have been
medicine truly in service of mercy. An important part of the physician’s
vocational commitment is to be concerned with patient health even in life’s
final moments, and the relief of breathlessness when a ventilator has been
removed is a genuine manifestation of this commitment.
Poor medicine can also involve setting aside proportionality or embracing
impermissible intentions. Physicians sometimes start a morphine infusion
simply because a patient is expected to die, and then the infusion is titrated
for no reason other than that the patient has not died yet. To give an
example, palliative medicine colleagues of Dr. Curlin once were asked to
see a patient in the ICU who had not recovered from a major surgery. The
family asked that life-sustaining technology be withdrawn. The palliative
medicine team left recommendations for medication to relieve distress, with
dosing proportionate to what they expected would be needed. They returned
hours later to find the patient profoundly sedated on doses of narcotics and
sedatives much higher than they had recommended. When they asked about
such high dosing, the surgical team said that the family was distressed that
it was taking so long for the patient to die. This case and others like it
demonstrate physicians detaching from the norm of the patient’s health,
instead beginning to aim at the patient’s death. When medication dosing
becomes disproportionate to what is needed to relieve disabling symptoms,
something has gone wrong.
Unfortunately, the PSM conditions physicians to ignore, or even to
welcome, these departures from proportionality and an orientation to the
patient’s health. After all, the point of the PSM is to relieve, using the tools
at hand, the conditions that the patient or her surrogate suffers. When being
alive comes to be experienced as a burden, the physician’s tools can quickly
become death-dealing, opening the patient up to the expanding domain of
so-called last-resort options.
CHAPTER NINE
Last-Resort Options
In this chapter we meet patients who are not only at the end of life but
seemingly at the end of hope. What should physicians do when patients are
dying and have nothing left to look forward to except pain and misery? We
have already established that physicians have good reasons to treat pain and
other symptoms effectively, and at times to accept substantial side effects of
such treatment, including even the effect of hastening death. But some
patients want more. They want to die on their own terms, not wait for their
illnesses to bring about their death in unwanted ways. In particular, they
experience a state of profound and irreversible debility and dependence as
one that is worse than being dead. What can be done for such patients?
In the provider of services model (PSM), physicians facing such cases are
urged to consider what their proponents call “last-resort options” for
palliative care. These include encouraging the patient to voluntarily stop
eating and drinking, administering palliative sedation to unconsciousness,
and, most prominently, offering assisted suicide and euthanasia. What
makes all of these practices controversial is the question of intention: is the
patient’s death intended in these practices? If so, on the Way of Medicine,
such practices are ruled out from the start.
Not so under the PSM. Rather, clinicians pursue the goals of minimizing
suffering and maximizing quality of life without any absolute prohibitions,
not even the prohibition against killing one’s patient. At the time of this
writing, assisted suicide and euthanasia remain illegal in most US
jurisdictions; for the moment, in most jurisdictions such practices are not in
the universe of options that physicians must offer patients. But when that
changes—as it has changed in several US states, all of Canada, and several
European nations—the PSM not only permits assisted suicide and
euthanasia; it can require physicians to accommodate patients’ requests for
these options, at least by referring them to someone who will provide them.
The PSM approach centers on its commitment to use medical technologies
to bring about well-being. After all, how can a patient be said to have well-
being if he lives when he wants to die, particularly when he obviously
suffers a degraded and steadily diminishing quality of life?
When the goal of medicine shifts from helping patients who are dying to
helping patients to die, practices that hasten death no longer seem like last-
resort options. Indeed, such practices seem to follow ineluctably from
making the relief of suffering—an alternate formulation of well-being—
medicine’s first principle. Medicine aims to minimize suffering and
maximize quality of life according to the patient’s judgment and values.
The patient is suffering and experiences a poor quality of life. The clinician
has the tools to make the suffering go away by making the condition of
being alive and conscious—which makes suffering possible—go away.
Although intentionally bringing about the patient’s death would seem to
contradict the goal of preserving and restoring health, medicine is no longer
constrained by such goals. Therefore, the clinician may, and is perhaps
morally obligated to, offer the patient various means by which the patient
can bring about the end of his life.
Before we get too far ahead of ourselves in discussing “last-resort options,”
let’s consider cases that involve continuing or withdrawing nutrition and
hydration. How would the Way of Medicine approach these practices?
ARTIFICIAL NUTRITION AND HYDRATION
Nora Garcia is moved to a private room for her use of the ventilator to be
discontinued. When that is done, despite the physicians’ expectations, Mrs.
Garcia breathes on her own, so a few days after that she is moved to a long-
term nursing facility. Six weeks later she has developed a bedsore but is
otherwise clinically stable. Her family now asks that tube feeding be
discontinued.
The laws of most nations allow tube feeding, or artificial nutrition and
hydration (ANH) to be discontinued at the request of a patient or the
patient’s surrogates. The reasonable-person standard applies to the latter,
but that standard would allow physicians to remove the feeding tube in Mrs.
Garcia’s case, just as many otherwise reasonable persons elect to
discontinue tube feeding in similar cases.
According to the PSM, the physician’s obligation here is straightforward:
inform the surrogates of what can be expected with continuing or
discontinuing the tube feedings, ask them to imagine what Mrs. Garcia
would choose if she could, and then accommodate the surrogates’ choice. In
such situations, surrogates and clinicians often talk about choosing quality
of life and comfort over degradation and suffering. They might talk about
allowing the patient to die with dignity. The application of such concepts,
along with the four principles guiding the practice of medicine (autonomy,
beneficence, nonmaleficence, and justice), tends to hinge on the ideal of
authentic choice: choosing what the patient would have chosen if she were
able.
Thus, for example, if the surrogates say that Mrs. Garcia would never have
wanted to live like this, they or Mrs. Garcia’s physicians might conclude
that continuing the tube feeding violates the duty not to harm because it
forces her to endure a degraded condition, or poor quality of life. If,
alternatively, the surrogates decide that the patient would have chosen to
continue the tube feeding (believing, perhaps, “She would have wanted
everything done”), discontinuing the feeding would seem to violate the
same duty not to harm, or at least fail to fulfill the principle of beneficence
by withholding something from which the patient benefits. Again,
everything turns on what the patient would have wanted.
Of course, when the patient clearly has refused ANH prospectively, or at
present still has the capacity to refuse, the case is even clearer: the
physicians must accommodate the refusal. But what is notable, and notably
different from the Way of Medicine, is just what surrogates and clinicians
are respecting when accommodating such refusals. If the patient refuses
nutrition and hydration in order to die, then proponents of the PSM
generally suggest that the decision itself is to be honored out of respect for
patient autonomy. The thinking here is straightforward: the patient decides
whether his life is worth living. If he decides it is not, that settles the
question of what should be done, despite what seems a clearly suicidal
intention.
By contrast, the Way of Medicine holds that life is always a good, and the
complex good of life and health is the object of medical commitment.
Accordingly, a patient cannot reasonably refuse artificial nutrition and
hydration—whether by advance directive or in the moment—if his goal in
doing so is to bring about his death. Likewise, a clinician or surrogate who
cooperates in that decision in order to bring about the patient’s death is
doing something wrong—contrary both to practical reason and to the norms
of medicine.
Having said that, cooperation with the patient’s request is not entirely ruled
out. While the Way of Medicine does not ask clinicians to respect an
unreasonable choice, it does ask them to respect patients’ authority to make
such a choice. Thus, doctors are not to refuse a patient’s request to
discontinue ANH, even if the patient’s choice is unreasonable. The doctors
cooperate in order to honor the patient’s legitimate authority, however, not
to bring about the patient’s death.
Moreover, patients can refuse ANH uprightly. A patient might, for example,
decide in advance not to ask certain forms of care of their future caregivers,
out of concern for those caregivers. Or, sensitive to the limits both of health
and of medicine, the very elderly might ask not to be encumbered with
tubes when their time is already short. Both of these reasons for setting
limits to medical interventions are legitimate, and generally where the
possibility of an upright refusal exists, the patient’s legitimate exercise of
authority is to be respected even if one strongly suspects that that authority
is being misused in a particular case.
Thus, when it comes to refusing artificial nutrition and hydration, the Way
of Medicine overlaps with the PSM in acknowledging a patient’s authority
to refuse medical interventions, including ANH, and it contradicts the PSM
in rejecting suicide and any intentional cooperation with it.
Mrs. Garcia’s case differs from the cases just described, however, insofar as
she did not request prospectively that she not receive artificial nutrition and
hydration. What should the physicians do? They and Mrs. Garcia’s
surrogates should deliberate in the same way that they deliberated about
removing the ventilator. The rule of double effect still applies, though
among proponents of the Way of Medicine, some disagree with the notion
that tube feeding in a case like Mrs. Garcia’s can reasonably be considered
to have a burden that is disproportionate to the benefits it provides. Further,
some worry that under the pretense of removing a burdensome intervention,
those who want to discontinue ANH for Mrs. Garcia are actually making
the removal a means of bringing about her death.
Recall that the tube feeding may be discontinued if it is disproportionately
burdensome—that is, extraordinary. This presupposes that real benefits
accrue to continued feeding, for if feeding becomes strictly futile (e.g., if
the patient develops a bowel obstruction), it would be unreasonable for
physicians to even offer to continue it. But in Mrs. Garcia’s case ANH helps
to maintain her life and health (if there is no life, there is no health, and vice
versa). These are genuine goods for all human beings, and Mrs. Garcia
remains a human being.
Of course, some people object that Mrs. Garcia’s life and health are of value
only insofar as they make it possible for Mrs. Garcia to pursue other goods.
If that is true, ANH is no benefit to her, because her life and health are of no
further instrumental value. This claim is incompatible with the requirements
of practical reason, however, for all the basic goods are intrinsically good
for all human beings. It is also incompatible with a straightforward
inference from a basic claim. If we consider ourselves as having intrinsic
value and acknowledge that we are living animal organisms, our biological
lives must be of intrinsic value, for that which constitutes the existence of a
being with intrinsic value must itself have intrinsic value. So we take this
objection to be misconceived: Mrs. Garcia’s life and health remains good in
itself, even if she can realize that good only to a minimal degree.
Feeding Mrs. Garcia also realizes the good of solidarity—a form of
friendship, of being humanly and personally connected to another, willing
his or her good for its own sake, and engaging in care for them when they
are in need. Some actions clearly would violate such solidarity: dressing
Mrs. Garcia up like a clown for the amusement of others, violating her
physical integrity, and the like. Caring for her—and feeding is a primordial
form of caring—realizes the good of friendship even if Mrs. Garcia does
not consciously experience it.¹
Does ANH bring burdens? Yes. Tube feeding brings costs as well as risks of
infection, aspiration, and other clinical complications. Whether Mrs. Garcia
suffers as a result of her feeding tubes is hard to say. The burdens ANH
imposes on her seem relatively light, if not trivial. However, some patients
who are not in Mrs. Garcia’s circumstances face further burdens. Patients
with Alzheimer’s disease, for example, are sometimes distressed by feeding
tubes and tear them out; preventing their doing so can require chemical or
physical restraints, which impose significant burdens of their own. Such
burdens could warrant withdrawing the tubes to avoid these
(disproportionate) burdens. Likewise, if a patient is actively dying or is
otherwise unable to assimilate nutrition, the benefits of feeding will not be
proportionate to the burdens, and feeding may be discontinued. But in Mrs.
Garcia’s case, it seems less clear that continuing ANH brings
disproportionate burdens.
ANH should not be discontinued with the intention of bringing about Mrs.
Garcia’s death, and this principle raises a particular difficulty for one
response to the question of proportionality. In that response, the surrogates
or physicians might note that the burdens of care for Mrs. Garcia are quite
significant: she is in a nursing facility, which is expensive, and watching
and visiting her in this state is emotionally and physically taxing for her
family, while her wound care is tedious for the nurses. Surely these burdens,
one might argue, are disproportionate to the minor benefit of continued life
in a state of radically diminished health.
The practical reasoning advocated in the Way of Medicine looks to the
burdens and benefits of a particular intervention to ask whether there is
proportionality or disproportionality between the good and bad effects of
that intervention. But here, for Mrs. Garcia, the intervention in question is
tube feeding. We have identified the benefits (life and health) and burdens
(cost, risk of infection) of that intervention. Discontinuing tube feeding
removes, in itself, precisely those burdens; it does not, as such, remove the
overall costs of hospital care or the overall emotional and physical burdens
of caring for Mrs. Garcia. What removes those burdens is Mrs. Garcia’s
death. So the choice to withdraw ANH in order to end those burdens seems
to involve intending Mrs. Garcia’s death. Such a choice is impermissible on
the Way of Medicine.
Deliberating reasonably in this case requires focusing on the benefits and
burdens of the tube feeding itself. If the benefits of ANH are proportionate
to the burdens of ANH, the burdens should be accepted. That said, it
remains the case that one of us (Tollefsen) thinks that Mrs. Garcia should
certainly be fed in this case (though she might be brought home if that
would alleviate the other burdens of her care), while the other (Curlin)
believes that the vocational shape of Mrs. Garcia’s life may in some cases
be better honored by keeping her as free from technological interventions,
including feeding tubes, as possible. So Curlin believes one might
reasonably judge that ANH, in Mrs. Garcia’s case, no longer promises
benefits proportionate to the burdens of ANH itself (however minor those
appear to be). Disagreement is not impossible for those committed to the
Way of Medicine.
We return now to the last-resort options, the first of which also involves
nutrition and hydration.
LAST-RESORT OPTIONS
Abe Anderson is declining. His oncologists stop his chemotherapy. He
elects to receive hospice care at home. His pain worsens, requiring steadily
increasing doses of morphine. He manages to stay awake most of the time.
The hospice physician comes to see him at home a few weeks later. In their
conversation, Mr. Anderson notes, “I don’t want to languish, doc. I want to
go out on my own terms. What can I do if I don’t want to go on any
longer?”
Voluntary Cessation of Eating
Abe’s question invites his physician to offer last-resort options. The first
such option is for Abe to voluntarily stop eating (and/or drinking). In that
case, Abe’s remaining days would be few, and with adequate morphine
those days could be made relatively painless. But as we already noted, this
choice includes a lethal intention: Abe would forgo nutrition and hydration
in order to hasten his death, an intention ruled out by the demands of
practical reason. The Way of Medicine likewise rules out recommending or
suggesting such an approach, even if it would be wrong to force nutrition
and hydration on a patient who had given up on eating. So the physician
should not offer Abe the opportunity to starve himself to death, as if that
were a legitimate medical option.
This case must be distinguished from an otherwise similar scenario. Patients
who are dying often begin to withdraw from food and water. As we have
noted, in the final days of a terminal illness, nutrition often cannot be
assimilated, but even somewhat before this point, patients with advanced
illness can find themselves with no desire to eat and even with revulsion at
the thought of food. Turning away from food under such circumstances
does not seem to us a suicidal choice, but rather a choice to avoid
something that no longer seems enjoyable or meaningful in the way it once
did. If death is hastened by this choice, that is a proportionate and morally
permissible side effect.
Sedation to Unconsciousness
A second “last resort option” would be to sedate Abe so that he lives out his
last days free of any conscious suffering. In what has come to be called
palliative sedation to unconsciousness, formerly known as terminal
sedation,² physicians intentionally sedate patients to the point of
unconsciousness and keep them unconscious until they die. This differs
from what is called proportionate palliative sedation, in which sedatives are
used for the purpose of relieving anxiety, agitation, breathlessness, or other
symptoms, and diminished consciousness is foreseen as a side effect but not
intended.
We have written at length elsewhere about the ethics of palliative sedation,³
but we first want to emphasize that the Way of Medicine supports
proportionate palliative sedation. As long as the clinician aims only to
relieve health-diminishing symptoms and has proportionate reason to accept
unconsciousness as a side effect (thus satisfying the rule of double effect),
the sedation is morally permissible, even in cases in which it is expected
that sedation will continue until the patient dies. Indeed, physicians cannot
act to relieve health-diminishing symptoms except by accepting some level
of sedation as a side effect of their efforts. Almost all of the medications
used to relieve pain and other symptoms cause sedation as a side effect.
This is true of narcotics, of course, but also of medications to relieve
anxiety, seizures, delirium, nausea, and itching. To treat sedation as a side
effect aligns with the fact that patients and their families generally do not
want their sensoriums clouded or their capacities to think, talk, and pursue
the goods available to them blunted, but most will accept these losses if
they are side effects of efforts to relieve disabling symptoms, particularly at
the end of life.
We also note that proportionate palliative sedation can relieve disabling and
distressing symptoms in nearly all if not all clinical circumstances. In his
book Dying Well: Peace and Possibilities at the End of Life, Ira Byock, a
seasoned hospice physician, describes a case in which he came finally to
intentionally sedate a dying patient to unconsciousness because the patient’s
severe pain had proven refractory to every other treatment modality.⁴ Those
who advocate for sedation to unconsciousness as a form of physician aid-in-
dying often invoke cases like the one Dr. Byock described, just as advocates
for physician-assisted suicide and euthanasia invoke cases of excruciating
and untreatable pain. But these appeals are red herrings. Dr. Byock noted
that the case he described was the only such case he had experienced in
more than fifteen years of caring for dying patients.⁵ One of the authors of
this book (Curlin) has practiced hospice and palliative medicine for more
than ten years and has never encountered a patient whose pain or other
disabling symptoms could not be relieved under the norms of proportionate
palliative sedation. Last-resort options in general, and palliative sedation to
unconsciousness in particular, are used much more commonly to relieve a
type of suffering that is quite distinct from the pain experienced by Dr.
Byock’s patient. They are used to relieve existential suffering.
Sedation to unconsciousness to relieve existential suffering contradicts the
norms of the Way of Medicine. Consider first the character of existential
suffering, and then how the capacity for wakefulness relates to human
health. Suffering is, to some extent, inevitable in dying, for dying is in its
nature an evil—not a moral evil, but a privation of something always and
everywhere good: namely, human life and, more specifically, the life of a
person. While death is not to be feared above all things, and while we
believe that hope in eternal life should accompany death, nevertheless,
death is not good, and suffering itself is the experience of that which is not
as it should be.⁶ So the experience of illness and the prospect of imminent
death usually bring suffering, whether or not the patient experiences pain or
other symptoms. Pain and other symptoms heighten suffering in their direct,
noxious effects on conscious experience and also insofar as they disrupt our
ability to do what humans otherwise do when they are healthy. Moreover,
patients who are dying often experience alienation from themselves, their
friends and family, and even God. All of these bring suffering.
Existential suffering is the cognitive awareness of that which is not as it
should be. At the end of life, a patient may experience such suffering
through revulsion at the threat of death, regret at missed opportunities and
botched choices, sorrow over failed or ruptured relationships, or fear of the
divine. These are real problems and real forms of suffering. As such, they
require choices, attempts to maintain or restore what harmony is possible at
the end of life: acceptance of death, repentance of sin, reconciliation with
loved ones, and peace with God.
Sedation to unconsciousness cuts short all of these possible responses to
existential suffering. While perhaps not a choice for death as such, it is a
choice for a kind of moral death, putting oneself existentially out of reach
of these and all other possibilities. Such possibilities can be dramatic: those
who have read the novel Brideshead Revisited (or seen the miniseries) can
call to mind Lord Marchmain’s literal deathbed conversion, which restored
him both to his religion and, in various ways, to his family.⁷ Thus he was
restored to the forms of harmony and integrity available to him even at the
very end of life. But integrity and harmony (with reality, with one’s self,
with others, with God) are basic goods, and the opportunity to pursue them
should not be discarded without exceptionally strong reason. Sedation to
unconsciousness to avoid existential suffering, rather than to treat refractory
and crippling pain or other symptoms, thus seems to us incompatible with
being fully open to human goods.
Consider now how the capacity for wakefulness relates to human health.
Making a patient permanently unconscious diminishes the patient’s health;
that seems an uncontroversial point insofar as the capacity for wakefulness
is an expression of health. Here we must distinguish the state of suppressed
consciousness from the state of sleep, in which the individual is capable of
arousal. We also must distinguish keeping a person unconscious until he
dies from sedating him temporarily, as physicians often do as part of their
efforts (e.g., surgery) to preserve or restore health. It seems that in most
cases, and certainly in the case of existential suffering, physicians who
intentionally and permanently sedate patients to unconsciousness thereby
contradict the purposes of medicine.
In a very rare case, however, palliative sedation to unconsciousness would
be permissible. In that scenario, the patient would suffer, or be expected to
imminently suffer, such a severe form of altered—diseased, unhealthy,
disabling—consciousness that it would make sense to cut off this unhealthy
consciousness in the same way it makes sense sometimes to cut off a
severely diseased (say, gangrenous) limb. In such a case, we can say that the
patient’s health is diminished by virtue of losing consciousness or a limb,
but his health is less diminished without the consciousness or the limb than
with it. A part can be sacrificed for the health of a whole. Put differently, to
the extent that suppressing consciousness allows the organism to relax from
a state of high physical and psychic stress, such unconsciousness might be
an expression of health, albeit of a radically diminished sort. Such sedation
could continue until death if a return to consciousness is expected to bring a
return to high levels of distress refractory to proportionate palliative
sedation.
While such cases are exceedingly rare, Dr. Byock’s patient may have met
this criterion, and in Dr. Curlin’s experience, some cases of agitated
delirium (often called terminal delirium) at the end of life also may meet
this criterion. Still, we caution against the tendency to amputate
consciousness too readily, even in such cases. That tendency seems driven
by pressures and temptations—since patients who are unconscious require
less of the physician’s attention—to make the appearance of suffering go
away.⁸
Physician-Assisted Suicide and Voluntary Euthanasia
In the final last-resort options, a physician might prescribe a lethal dose of
some medication in order to help Abe take his own life (physician-assisted
suicide) or, alternatively, perhaps because Abe is too weak to do so himself,
the physician might administer the lethal dose himself (voluntary
euthanasia). We refer to both of these options as physician aid-in-dying.
Let us begin our discussion of physician-assisted suicide and voluntary
euthanasia not with our fictional case studies involving Mr. Anderson or
Mrs. Garcia but with a real case, one of the most influential in making the
public argument for physician aid-in-dying in our time.
Brittany Maynard was diagnosed with brain cancer in January 2014; she
was twenty-nine years old. In the remaining eight months of her life, she
became a prominent public advocate for legalization of physician-assisted
suicide. She moved from California to Oregon and, according to a plan she
had specified in advance, died on November 1 of that year after ingesting a
lethal physician-prescribed drug cocktail. Unquestionably, as a young,
attractive, and tragic face of the right-todie movement, Ms. Maynard, as
Arthur Caplan put it, “shifted the optics of the debate.”⁹
Ms. Maynard’s story illustrates a pattern: those who seek physician aid-in-
dying are rarely driven by the direct experience of refractory pain or other
symptoms.¹⁰ At the time she committed suicide, Ms. Maynard was not
experiencing symptoms beyond the reach of conventional palliative
medicine, nor are such symptoms expected from a brain tumor. Rather, as
she said, she chose to end her life on her own terms in order to avoid the
prospect of further debility and decline, in which she might “suffer
personality changes and verbal, cognitive and motor loss of virtually any
kind.”¹¹
Ms. Maynard’s desire to avoid debility and dependence reflects the pattern
found in official reports from Oregon and Washington State, where nine out
of ten patients requesting assisted suicide have reported being concerned
about “losing autonomy” (91.5 percent) and being “less able to engage in
activities making life enjoyable” (88.7 percent).¹²
The problem to which assisted suicide and euthanasia pose solutions, then,
is not uncontrolled pain. In Oregon, only one in four patients (24.7 percent)
have reported even “concern about” inadequate pain control,¹³ and at no
time in history have physicians and patients had greater access to effective
tools for treating pain and other distressing symptoms, tools that can be
deployed aggressively under ethical norms that have guided medicine for
ages.
Rather, the problem to which aid-in-dying poses a solution is loss of control
—the desire to sustain self-determination and autonomy in the face of
debilitating illness. In a piece in the Journal of the American Medical
Association, Dr. Timothy Quill and colleagues wrote, “Patients with serious
illness wish to have control over their own bodies, their own lives, and
concern about future physical and psychosocial distress.”¹⁴ Brittany
Maynard put the point bluntly in her online manifesto: “I want to die on my
own terms.” Seen in this light, the movement toward physician aid-in-dying
is the culmination of the PSM approach to medicine and medical ethics.
Ms. Maynard then added, “My question is who has the right to tell me that I
don’t deserve this choice?” That is a powerful question in our day. The
former Hemlock Society is now called “Compassion and Choices”
(emphasis ours).¹⁵ The California law legalizing assisted suicide was called
the End of Life Option Act (again, our emphasis).¹⁶ When Governor Jerry
Brown signed it, he said he did not know if he would avail himself of
assisted suicide, but “I wouldn’t deny that right to others.”¹⁷ Choice looms
large.
But what kind of choice is Ms. Maynard and others like her being denied if
physicians refuse to hasten their deaths? Ms. Maynard already had the right
to refuse life-sustaining treatment. She had the right to proportionate
palliation of her symptoms even if death were hastened as a side effect. She
had the means and capacity to cause her death by numerous methods that do
not involve physicians and that are equally if not more efficient and
effective than ingesting an overdose of pharmaceuticals. Why is it so
essential that she and others have physicians, in particular, cooperate in
helping them kill themselves?
That physicians are being asked, or even required, to cooperate shows that
“the right to choose” is, as the late Robert Burt noted, “radically incomplete
as a justification for physician assisted suicide.”¹⁸ The right to choose has
been transformed into a positive entitlement to have others help bring about
what has been chosen—and not just any others, but medical professionals
specifically. The physician aid-in-dying movement portends large-scale
changes for the medical profession that will mark the definitive end of the
Way of Medicine and the advent of a more authoritarian form of the PSM.
We discuss the PSM’s exclusivist and authoritarian tendencies in chapter
10. Here we consider three questions that are central to evaluating the
proposals for physician aid-in-dying. First, and most generally, how do the
requirements of practical reason bear upon the practice of physician aid-in-
dying? Second, how is physician aid-in dying related to the ends of
medicine? And third, what will physician aid-in-dying do to patient trust?
The Requirements of Practical Reason and Killing at the End of Life
Practical reason’s judgment on the question of physician aid-in-dying is in
one sense quite straightforward. All the suggested forms of this practice,
including physician-assisted suicide and voluntary euthanasia, involve
intentional killing: the patient’s death is the means to relieve her suffering
or is the satisfaction of her desire to maintain control. But it is always
wrong to intend the death of an innocent person. So one may not reasonably
kill oneself, kill another, or help another to kill him- or herself. So far, then,
the various forms of aid-in-dying seem little different morally from elective
abortion.
But killing at the end of life differs from abortion in an important way. No
abortion ever takes place with the consent of the unborn child, so except in
vital conflict cases, such killing not only violates the moral norm that basic
goods are not to be intentionally damaged or destroyed, but also the norm
of fairness. (As our discussion of Judith Jarvis Thomson showed, the latter
norm is usually violated even when the former norm is not.) In contrast—
and the aid-in-dying movement makes much of this fact—those who seek
physician assistance in death generally actively want and choose to die.
While physician aid-indying clearly violates the norm against intentional
killing, physician aid-in-dying for competent adults does not obviously
violate the norm requiring fairness.
As a matter of clinical ethics, the norm requiring fairness is irrelevant
insofar as killing the innocent is always wrong, and no morally upright
physician or patient would participate in such killing. But fairness is a
central part of justice, and justice is the paradigmatic social virtue. Political
states and professional institutions are structured around the demands of
justice. Even though an act might be morally wrong, if it is not a matter of
injustice, the state is unlikely to show much concern. People arguing that
the state and the medical profession should forbid physician aid-in-dying
make a stronger case if they show the practice to be not only wrong but
substantively unjust.
We believe this challenge can be met. Legalizing physician aidin-dying is
rightly a matter of political concern and concern for the medical profession,
especially if it threatens to reshape medical practice in ways that portend
harms to many unconsenting patients. Insofar as physician aid-in-dying
poses such a threat, strong reasons persist to maintain vigorous legal and
professional restrictions on the practice and to refuse to give physicians a
right that no other citizen possesses: the right to intentionally cause the
death of an innocent person.
The End of Medicine and Aid-in-Dying
The Way of Medicine also returns a quick answer to the question of
physician aid-in-dying. The end of medicine is health, and the physician
professes to seek health in patients. Physician-assisted suicide and
voluntary euthanasia involve actions that intend the death of the patient, the
first by means of cooperation with the patient’s suicidal intention, the
second by a direct action of the physician intended to end the patient’s life.
Few acts seem more distinctly contrary to the end and the vocational
commitment of medicine, and for this reason alone, they have no place in
the profession. Nor should physicians be expected, much less required, to
aid or facilitate such actions, even by providing referrals.
For a profession in good order, this point would suffice. But the question
remains: how are concerns of justice and fairness implicated here? To
address this question, we turn to a further, deeply related, objection to
physician aid-in-dying: these practices threaten to erode trust and
trustworthiness—central virtues of the physician-patient relationship,
without which the profession cannot long continue.
Trust
Robert Burt, quoted earlier, also noted, “The confident assertion of the self-
determination right leaves unacknowledged and unanswered a crucial
background question: who can be trusted to care for me when I am too
vulnerable and fearful to care for myself?”¹⁹
His point is well taken. For every Abe Anderson and Brittany Maynard who
wants a physician to help them end their lives, physicians are called to care
for numerous other radically diminished patients who, along with their
families, count on physicians to care for them, seeking to preserve and
restore the health that remains insofar as reasonably possible. An example
from Curlin’s practice makes the point:
Dr. Curlin was asked to see a patient in the emergency room.²⁰ The patient,
Mr. Roberts, had advanced dementia; he had not spoken in three years. He
was brought to the hospital by his brother and his niece, who for several
years had cared for him at home. The emergency physician’s initial
evaluation made clear that Mr. Roberts had a serious pneumonia and was
beginning to suffer septic shock and respiratory failure. After Dr. Curlin
spoke briefly with Mr. Roberts’s family members, they agreed with his
proposal to give the patient antibiotics, oxygen, and other supportive
therapy but to forgo mechanical ventilation, even if Mr. Roberts came to the
point of not being able to breathe on his own. Dr. Curlin then asked the
patient’s brother and niece if they had ever considered hospice care for Mr.
Roberts. Both shook their heads and said adamantly, “We are not interested
in hospice.” “Why is that?” Dr. Curlin asked. They responded that what
they had seen indicated that hospice too often forgoes any effort to provide
medical care for patients, instead focusing only on giving potent drugs like
morphine and sedatives, and thereby hastening patients’ death.
Mr. Roberts’s family members’ concern is one that Dr. Curlin has heard
voiced by numerous other patients and family members in Durham, North
Carolina, and on the South Side of Chicago, and it highlights a question that
physicians must consider: with respect to physician aidin-dying, which of
the following should physicians care about most: maintaining the trust of
those who, like Mr. Roberts and his family, already experience the debility,
dependence, and suffering that advanced illness brings or empowering those
who, like Brittany Maynard, seek through assisted suicide to avoid such
debility, dependence, and suffering?
That was not a rhetorical question for Mr. Roberts’s family. Indeed, like too
many others, they had come to the conclusion that some physicians who
wield the tools of palliative medicine are not to be trusted because such
physicians have so prioritized relieving suffering that they fail to do what
patients count on physicians to do: use reasonable means to preserve the
health and lives of the patients. How much less likely would Mr. Roberts’s
family be to entrust him to a physician or group of physicians that is in the
habit of practicing assisted suicide or euthanasia or encouraging people to
stop eating or to stop feeding their loved ones? We doubt their worries
would be assuaged upon hearing that the physicians do so “only for those
who choose” these options.
Physicians cannot practice hastening or causing the deaths of their patients
without undermining the trust on which the practice of medicine depends.
This insight is not new. Physicians who care for patients with advanced
illness have long known that everyone will at times be tempted to do away
with suffering by doing away with the patient. To militate against that
temptation, physicians have for more than two millennia sworn in the
Hippocratic Oath, “I will neither give a deadly drug to anybody who asks
for it, nor will I make a suggestion to this effect.”²¹ The American Medical
Association has maintained since its founding, “Physician assisted suicide
is fundamentally inconsistent with the physician’s professional role.”²² The
World Medical Association has opposed assisted suicide and euthanasia
since the association was formed and issued the Declaration of Geneva just
after the Second World War. Indeed, insofar as physicians enjoy the trust of
patients made vulnerable by illness, it is because, since Hippocrates, at
least, they have maintained solidarity with those who are sick and disabled,
seeking only to heal and refusing to use their skills and powers to do harm.
That is why physicians have refused to participate in capital punishment, to
be active combatants, or to help patients commit suicide.
Importantly, this boundary against intentionally causing a patient’s death
not only gives patients a reason to trust physicians but also gives physicians
the freedom they need to do their work. For example, Dr. Curlin was able to
tell Mr. Roberts’s family members that as a physician he is committed to
never hasten or cause a patient’s death intentionally. This boundary creates
a space in which he and other physicians can act decisively to palliate
distressing symptoms—for example, by using morphine to alleviate the
apparent breathlessness that Mr. Roberts was experiencing or sedatives to
relieve a state of restlessness and agitation in Abe Anderson. Without this
boundary, Mr. Roberts’s family has good reasons to worry that the
morphine that leads to sedation is dosed not in proportion to the pain or
breathlessness of their loved one but in an effort to hurry along the dying
process.
To return to the question we posed above: which should be most important
to physicians—maintaining the trust of those who, like Mr. Roberts and his
family, already experience the debility, dependence, and suffering that
advanced illness brings or empowering those who, like Brittany Maynard,
seek through physician aid-in-dying to avoid such debility, dependence, and
suffering? The witness of physicians and patients through the centuries and
into the present has affirmed that we cannot have it both ways. But the
question is central to determining the practice of medicine into the future.
At the heart of medicine is solidarity with those who are diminished in
health, disabled in body, and therefore most dependent on trustworthy
professionals devoted to their care. Physicians maintain solidarity with
those who, to borrow Ms. Maynard’s terms, suffer “verbal, cognitive and
motor loss of virtually [every] kind,” whether from developmental
disabilities, traumatic injuries, dementia, or other debilitating chronic
conditions. The countless patients who live with such conditions display a
truth that Brittany Maynard could not see and that those suffering advanced
illness may struggle to keep in view: debility and dependence do not render
lives not worth living; human dignity does not require living or dying on
one’s own terms.
In a culture that emphasizes success and productivity, youthfulness and
beauty, autonomy and control, such trust becomes obscured. The public
images of Ms. Maynard made it conspicuously obvious that she possessed
all of those when her disease struck, and her statements made it clear that
she saw a condition in which these were lost as one worse than death. Not
incidentally, those who advocate for and avail themselves of assisted
suicide are overwhelmingly white, well-off, and accustomed to being able-
bodied. According to official reports, of the 1,083 people who died in
Oregon by assisted suicide prior to January 19, 2018, only 1 was African
American (statistically, one would have expected at least 20, as 2.1 percent
of Oregon’s population is African American, according to the US Census).²³
In Washington State’s March 2018 report, fewer than 4 percent of deaths by
assisted suicide (from 2015 to 2017) were nonwhites, whereas 20 percent of
the population was nonwhite.²⁴ Mr. Roberts’s family, like most of Dr.
Curlin’s patients in Chicago and Durham, was African American. A
population that already has experienced itself as vulnerable is more likely to
see the practice of physician aid-in-dying not as a boon but as a threat.²⁵
If “verbal, cognitive, and motor loss” renders life not worth living, you
might think that disability groups would welcome physicians hastening or
causing the deaths of those who so choose. But the opposite is the case.
Disability groups overwhelmingly oppose assisted death. The prominent
advocacy group Not Dead Yet speaks for many in arguing that “it cannot be
seriously maintained” that legalization of assisted suicide will not lead to
“inappropriate pressures from family or society” for people to end their
lives. The group contends that “assisted suicide laws ensure legal immunity
for physicians who already devalue the lives of older and disabled people
and have significant economic incentives to at least agree with their
suicides, if not encourage them, or worse.”²⁶
To summarize, under the approach we propose, assisted death is
impermissible, first because it is never reasonable for anyone to kill the
innocent or to help the innocent kill themselves. Assisted death is
impermissible for physicians a fortiori, because killing contradicts the very
nature of the practice of medicine and its orientation to the patient’s health.
If anyone is to help people take their lives, let it not be physicians. But even
if these time-tested reasons have lost their grasp on our moral imaginations,
it should be clear that it is unjust to purchase yet another choice for those
accustomed to living life on their own terms at the cost of betraying
physicians’ distinctive solidarity with, and thereby undermining the trust of,
those who live under the terms of illness and disability that they have not
chosen, but with respect to which they should be able to count on
physicians’ care.
The question of trust points to the importance—not just for the medical
profession, but also for society and law—of maintaining with strictest
fidelity the norm against permitting doctors intentionally to kill their
patients. The profession of medicine is socially of great value: it ensures
that the good of those whose health is compromised will be pursued based
on the solidarity of the healer and the patient. But that relationship remains
unequal, and that inequality contributes to the patient’s vulnerability.
Clinical ethicist Richard Zaner has gone so far as to wonder what keeps
physicians from acting like Plato’s Gyges. When Gyges discovered a ring
that made him invisible, he immediately killed the king and seduced his
wife, taking advantage of his power in the assurance that he would not be
caught.²⁷
Zaner points to the importance of trust as a constitutive virtue for the
medical profession, one without which there simply would be no such
profession. Given the deep and abiding importance of medicine—we will
all be sick, we will all be vulnerable, and we will all die—it is imperative
that this fundamental virtue be maintained. And that requires, we might say,
a medical-moral ecology that upholds the virtue and makes its continued
existence possible. Such an ecology requires that the norm against
intentionally harming or killing be maintained in the medical profession
with all the strictness suggested by the Way of Medicine. That norm is the
touchstone of medicine.
CHAPTER TEN
Conscientious Medicine
Doctors often refuse patients’ requests—a fact about the practice of
medicine so familiar that it is easy to overlook—even when patients request
interventions that are legal and permitted by the medical profession.
Doctors’ refusals are neither new nor infrequent, and only a small minority
occasion any controversy. Surgeons refuse to operate when they believe a
surgery is unlikely to succeed. Physicians refuse medications when they
believe the medications are unlikely to be helpful. Clinicians refuse
requested interventions because of concerns about safety or efficacy, and
they refuse because of less tangible concerns that are no less real. Some
pediatricians refuse to supplement the growth hormones of boys who are
short because of concerns about crossing a line between treatment and
enhancement. Some primary care physicians at times refuse costly workups
for what they believe are psychosomatic syndromes out of concern for their
colleagues’ time and other medical resources. Obstetrician-gynecologists
who will abort fetuses with lethal congenital anomalies may refuse to abort
those with Down syndrome or cleft palates out of concern about societal
attitudes toward those with disabilities or those who are female out of
concern about sexism. Physicians refuse patients’ requests even when such
requests are informed, even when patients meet some published criteria for
the intervention in question, and even when physicians are aware that some
or even most of their colleagues would disagree with their refusals.
In recent years, however, controversy has erupted over the issue of
physicians’ refusing to provide or facilitate patients’ access to certain
morally contested interventions, such as abortions, physician-assisted
suicides, or surgical modifications of secondary sex characteristics (gender
transition services). When physicians refuse such interventions, many now
argue, they are letting their personal values interfere with their professional
obligations.¹ A recent essay in the New England Journal of Medicine by
Ronit Stahl and Ezekiel Emanuel illustrates the point: Stahl and Emanuel
assert that patients have a right to choose the healthcare services they need
for their own well-being, and physicians have a corollary obligation to
accommodate the patients’ choices, either by providing the requested
interventions directly or by referring the patients to doctors who will.²
Such claims are starting to gain the force of policy in some jurisdictions.
Historically, the medical profession has given wide latitude to physicians’
discretion in areas of disagreement. Professional codes have consistently
stated that physicians are not obligated to satisfy patients’ requests for
interventions that the physicians believe are not in the interest of the
patients’ health. In 2015, however, Ontario’s College of Physicians and
Surgeons issued a rule requiring physicians to “take positive steps” to make
“effective referrals” for all legal interventions that a patient might request,
including euthanasia. The college’s working group concluded that there is
“no qualitative difference” between euthanasia and other “health care
services.”³ In 2016, the Illinois General Assembly revised a decades-old
law that previously had prevented employers from discriminating against
healthcare workers who refused to engage in practices to which they had
principled objections. The new version requires employees to at least make
referrals.⁴ In 2017 Sweden’s Labor Court ruled that clinics can lawfully
refuse work to nurse midwives who refuse to perform abortions.⁵ If
physicians have personal objections to some interventions, the reasoning
goes, they must avoid areas of medicine in which those interventions are
likely to be requested.
Something is right about all of this. After all, as Stahl and Emanuel put it,
physicians are not conscripts. No one is compelled to become a physician,
and in becoming a physician, one willingly takes on responsibilities that go
with the role. Surely the profession and the public can hold physicians to
fulfill their professional responsibilities or, as Stahl and Emanuel put it,
their “role morality.”⁶ We would not countenance teachers who refuse to
grade their students’ work or attorneys who refuse to represent their clients
before the justice system. Why would we allow physicians to refuse what
patients request?
Yet the boundaries of what we accept and what we reject where
professional refusals are concerned clearly center on answers to the
following questions: what is the profession for, and what are the obligations
that come with one’s profession? Teachers are allowed and even expected to
refuse requests of students if those requests are irrelevant or run contrary to
the purposes of teaching. The same is true for lawyers and their clients.
The same is also true for medicine, yet medicine is, as we have argued
throughout this book, in the grip of a conflict between two radically
different ways of answering these questions, and debates about
conscientious refusals indicate that the profession of medicine cannot
continue indefinitely with these two contradictory construals of its purpose.
The issue of conscientious refusals brings the rivalry and tension between
the PSM and the Way of Medicine to a head. Physicians face a choice, and
the stakes are high. Insofar as their profession embraces the PSM,
physicians’ consciences threaten their patients’ well-being and must be
suppressed. Unfortunately, by suppressing conscientious practice, the PSM
reduces medicine to a demoralized job and augurs the end of medicine as a
profession. Therefore, we encourage physicians to reject the PSM and
recover the profession’s orientation to their patients’ health as a genuine
good. This commitment to their patients’ health gives physicians a
reasonable standard for discerning which requests should be accommodated
and which refused.
THE PROVIDER OF SERVICES MODEL AND PHYSICIANS’
REFUSAL
Abe Anderson’s physician refuses to prescribe antibiotics.
Cindy Parker’s physician refuses to refer her for an abortion.
In the PSM, informed consent gives way to informed choice: patients
choose, physicians provide. A physician may refuse to perform
interventions that are technically infeasible, illegal, or unavailable and may
refuse interventions that are futile with respect to the reason for which the
patient seeks the intervention. But if these threshold conditions are met, the
patients’ choices are to be accommodated. Principles can be brought to
bear, of course, and utilities can be measured in an effort to maximize them.
The physician can also advert to “accepted clinical and professional
norms.” Only the patient, however, is in a position to balance and specify
the relevant principles or to weigh the relevant utilities in order to
determine what the patient’s well-being requires. Moreover, according to
the PSM, the central clinical and professional norm is putting patient well-
being first; personal scruples cannot get in the way of a patient’s receiving
what she genuinely believes she needs.
This idea of patient well-being plays a central role in the PSM. When
proponents of the PSM criticize conscientious refusals, they consistently
refer to the patient’s well-being rather than to the patient’s health. “Health
care providers,” write Stahl and Emanuel, “have a primary interest: to
promote the well-being of patients.”⁷ And again: according to the American
Congress of Obstetrics and Gynecology (ACOG), “Providers” have a
“fundamental duty to enable patients to make decisions for themselves.”⁸
Under the PSM, medical professionals are providers whose goal is to do
what is conducive to patients’ well-being. This defines what Stahl and
Emanuel call the physician’s “role morality.” Adhering to that morality
“means offering and providing accepted medical interventions in
accordance with patients’ reasoned decisions.”⁹
Given all of this, we might expect proponents of the PSM to condemn both
of the above refusals. Curiously, that is not what happens. True, Mr.
Anderson and Ms. Parker both request interventions that are feasible, legal,
and available, and neither intervention is futile with respect to the patient’s
goals. Moreover, Abe and Cindy both believe their well-being requires the
interventions they request. Abe understands why the physician does not
recommend antibiotics, but he wants the prescription in order to satisfy his
wife and to reduce the (albeit small) risk of his missing more days of work.
Cindy understands why many find abortion morally problematic, but she
wants the abortion in order to preserve the future that she believes she will
lose if she carries the pregnancy to term. Despite these similarities, only the
physician’s refusal of Cindy’s request typically raises the ire of those who
criticize conscientious refusals.
How can this be? On the Way of Medicine, each refusal may be justified
insofar as it is grounded in a judgment that what is requested does not serve,
or indeed is contrary to, the end of patient health. How, though, can the
PSM distinguish between the two cases? It does so by introducing and
leaning heavily on a new distinction: between refusals based on
professional reasons and refusals based on personal reasons. According to
the PSM, the physician who refuses Abe’s request for antibiotics is justified
because the physician refuses for medical or professional reasons and
thereby upholds the physician’s “role morality.” In contrast, the physician
who refuses Cindy’s request is condemned for allowing personal and
private concerns to intrude on what should be a strictly professional
consideration.
It is difficult to overstate the importance to the PSM of the distinction
between the personal and the professional, whether posed as personal moral
values versus professional ethical obligations, personal conscience versus
professional conscience,¹⁰ personal integrity versus professional integrity,¹¹
or simply personal reasons versus medical reasons. Physicians may believe
what they will “in their private lives,” write Stahl and Emanuel, “but in
their role as health care professionals, they must provide the appropriate
interventions as specified by the medical profession.”¹²
It perhaps goes without saying that judgments of conscience are, for the
PSM, the apotheosis of the personal. To refuse on the basis of conscience is
to allow personal biases to interfere with professional obligations,
particularly with the obligation to respect patients’ autonomy. It may be
difficult, the reasoning goes, but sometimes clinicians have professional
obligations to do what their personal consciences object to doing.
Yet even advocates of the PSM concede that clinicians may refuse patients’
requests when they have strong medical reasons to do so, as presumably
Mr. Anderson’s physician did, judging that antibiotics are not medically
indicated for a viral infection. How does one know whether one’s reasons
are sufficiently medical? The PSM fails to provide any nonarbitrary
standard to guide such judgments (a problem to which we return below),
but proponents of the PSM are clear that medical reasons simply cannot
include traditional norms such as the injunction to never intentionally
damage or destroy the patient’s health. They are equally clear that
physicians who allow personal concerns to influence their professional
practices thereby abuse their power and threaten harm to their patients—not
harm to the patients’ health per se, but harm to “well-being as the patient
perceives it.”¹³
Here we see the final conceptual novelty of the PSM: its standard for harm
emerges from its standard for benefit—patient well-being. In the end, if the
patient desires something in accordance with her conception of her own
well-being, the PSM calls on the physician to provide what the patient
requests or at least refer her to someone who will. To do otherwise is to fail
to obey the principle of nonmaleficence.
This position comes with deep political and professional implications. From
the standpoint of social authorities, including the state and professional
licensing organizations, the PSM implies that a physician is obligated via an
implicit social contract to provide health-care services according to the
patient’s informed choices. Dan Brock, in arguing that physicians are at
least obligated to refer patients for any legal intervention, takes for granted
that the medical profession is obligated by social contract to make available
all legal interventions.¹⁴ Therefore, authorities must scrutinize physicians’
refusals carefully; the burden of proof is on physicians to justify their
refusals and to show that they are not based on personal values.
ACOG proposes further scrutiny to make sure that physicians’ refusals are
not based on prejudice and that they are based on sound science.¹⁵
Physicians may not, for example, refuse to prescribe contraceptives based
on concern about preventing implantation of an embryo, because studies
suggest that the incidence of such effects is low (there is no need to
consider whether the incidence is low enough to make the moral difference,
as long as there is “scientific support” for treating the incidence as trivial).
Some proponents of the PSM ask policymakers to mandate such scrutiny, to
demand alternative service from those who refuse patients’ requests,¹⁶ and
to threaten sanctions that would make conscientious refusals costly.¹⁷
But such demands appear to be merely stopgap measures in anticipation of
the desired end state: the elimination of conscientious refusals from the
professional lives of physicians. As Julian Savulescu put it more than a
decade ago in an essay that seems increasingly prophetic, “If people are not
prepared to offer legally permitted, efficient, and beneficial care to a patient
because it conflicts with their values, they should not be doctors.”¹⁸
THE WAY OF MEDICINE AND PHYSICIAN REFUSAL
The Way of Medicine casts physicians’ refusals in a very different light,
asking first whether a refusal is consistent with, or contradicts, the
physicians’ commitment to the patients’ health. Rather than a prima facie
obligation to provide whatever a patient seeks, the physician instead has an
obligation to pursue what the patient’s health requires (understanding that
there may be several possible avenues of pursuit) and to refuse to act in
ways that are contrary to the patient’s health. Such refusals, rather than
abusing power, properly exercise the physician’s authority.
Note how differently the Way of Medicine treats the categories of personal
and professional. Because the PSM eschews any objective end for
medicine, the professional obligations of the physician must come from
outside the practice of medicine. Those obligations cannot be generated and
justified by commitments to an objective good that provides the purpose for
the profession. Hence the importance of what is legal, what is technically
possible, and what is desired by the patient, none of which is intrinsically
related to an essential purpose of medicine. Thus also, professional
obligations are potentially at odds with the physician’s personal
commitments, which must be left behind or overcome when they conflict
with the “professional.”
By contrast, the Way of Medicine calls on the physician, as a member of the
profession, to personally deepen and specify a commitment that the
physician already has made: attending to those who are sick so as to
preserve and restore their health—to raise that commitment to the level
appropriate to a vocation-defining profession. For practitioners of medicine,
then, the central obligation in each of the above cases is clear: to act
reasonably to preserve and restore the patient’s health, and to refuse to act
otherwise.
As we see from a slightly more philosophical perspective in the next
section, physicians can succeed in this task only if they practice according
to conscience. A physician’s conscience is clinical judgment in action. It is
the capacity used when judging whether an inclination to refuse Abe’s or
Cindy’s request is based on good reason, unreasonable desire, or unjustified
prejudice. Practicing conscientiously may be difficult, but it can never be
reasonable for a clinician to do otherwise.
The Way of Medicine also has implications for those with professional and
political authority. It teaches them that if physicians are to attend to those
who are sick using reasonable means to preserve and restore their health,
they need professional space in which to exercise judgment and to practice
conscientiously. Although the state has grounds to hold physicians
accountable to general norms of justice and the licensing and accrediting
authorities have grounds to hold physicians accountable to meet their
professional obligations, neither the state nor any other authority has
grounds to compel physicians to contradict their professional
responsibilities.
Thus, neither the state nor the profession should be in the business of
coercing physicians into meeting unscrutinized patient demands, any more
than they should coerce patients to accept this rather than that physician
proposal. Patients must be protected from the unscrupulous and the
incompetent, which a profession’s best efforts will never entirely succeed in
weeding out, and a profession must ensure that all its professionals carry
out the constitutive commitments of the profession to seek healing for those
who are sick. But professional responsibility encompasses the obligation,
and hence the right, to make conscientious judgments about what is
required in light of one’s guiding professional and vocational commitments.
This is no less true for physicians than for other professionals.
VIRTUES OF THE WAY OF MEDICINE
One’s approach to conscientious refusals turns on how one defines the
substance of physicians’ professional commitments and obligations, and we
have argued throughout the book that the Way of Medicine specifies those
commitments and obligations more reasonably. The Way of Medicine has
additional virtues that the PSM lacks.
A Better Understanding of Conscience
What makes a refusal conscientious? A judgment of conscience is, in the
paradigm case, a person’s final determination of what is permitted, not
permitted, or obligatory in a particular circumstance. What faculty is
responsible for these judgments? The traditional view is that of Aquinas: it
is practical reason, which knows the first principles of the moral law, and
practical reason, which applies those principles to situations and
circumstances so as to lead to particular moral judgments about how one
ought to act. Thus, the faculty that is responsible for judgments of
conscience, as well as the more general normative judgments presupposed
by conscience, is human reason, which is why we have spoken throughout
this book of the requirements of practical reason.¹⁹
Three points are worth noting here. First, conscience judges a person’s own
actions or motives, not those of others. Second, conscience is not a set of
considerations that a person might weigh in making a moral judgment;
rather, conscience is exercised in the judgment about how one should act in
light of all such considerations. Third, as an act of human reason,
conscience is necessarily limited and fallible; no person sees with absolute
clarity, and no person judges his or her own actions with perfect accuracy.
In light of these three points, we can see that although conscientiousness—
following one’s judgments of conscience—is necessary for ethical action, it
is not sufficient. A malformed or misinformed conscience will err. For
example, a conscientious physician may fail in his duties to relieve a
patient’s debilitating pain because he has not been trained to pay close
attention to or seek to relieve pain. Alternatively, he may fail because he
mistakenly interprets the patients’ behavior as drug-seeking and
malingering. So every physician is obligated to seek to inform his or her
conscience with the best available information, including true moral
principles. Every physician must consider arguments made by patients or
colleagues that call the physician’s initial judgment into question, and
physicians must be willing to change their judgment when they can see that
it was mistaken.
Nevertheless, in the end physicians must act, and however fallible,
physicians can act ethically only if they act according to their consciences.
Errors with respect to conscience obscure this fact. According to ACOG,
“An appeal to conscience would express a sentiment such as ‘If I were to do
“x,” I could not live with myself / I would hate myself / I wouldn’t be able
to sleep at night.’”²⁰ In fact, rarely are conscientious practices so
emotionally momentous. Rather, to practice conscientiously is simply to act
according to one’s best judgment about how one ought to act from situation
to situation, patient to patient.
Others allege that appeals to conscience are disingenuous and hide
unspoken prejudices.²¹ It goes without saying that physicians who act
disingenuously are not acting conscientiously. To act conscientiously is to
act according to what one understands to be the demands of reason. Even
where agreement exists about the purposes of medicine, physicians still
must consider innumerable different factors in order to discern how best to
seek the health of a particular patient in a particular context. This task is
almost always attended by ambiguity and uncertainty, requiring what
Aristotle called phronesis or practical wisdom, the manifestation of which
in the practice of medicine has been called good clinical judgment.²² If
physicians are to exercise clinical judgment in seeking their patients’ health,
they will necessarily refuse some patient requests.
These points illustrate another virtue of the Way of Medicine: its
understanding of conscience is much more adequate than that of the PSM.
The PSM asks us to treat conscience not as a faculty of reason but as a set
of arbitrary and idiosyncratic personal values. Stahl and Emanuel equate
conscience with appeal to “personal religious or moral beliefs.”²³ With
conscience so construed, the physician who acts conscientiously is focused
on himself and his own needs rather than on the good and what is required
of him. ACOG similarly associates conscientiousness with a need to be able
to sleep at night and a defense against moral disintegration. These personal
needs, however important, are in tension with one’s professional
commitments: “By virtue of entering the profession of medicine, physicians
accept a set of moral values—and duties—that are central to medical
practice. Thus, with professional privileges come professional
responsibilities to patients, which must precede a provider’s personal
interests.”²⁴ Stahl and Emanuel similarly aver that, “physicians’ personal
commitments cannot outweigh the interests of patients,” and they contend
that to follow conscience in refusing a patient’s request “violates the central
tenet of professional role morality in the field of medicine: the patient
comes first.”²⁵
These misconstruals of what the conscience is lead critics to make
unsupportable and contradictory claims. Critics claim that a clinician who
refuses a patient’s request thereby allows the clinician’s conscience to
trump the patient’s conscience, when in fact no conscience can trump
another conscience, since conscience judges only one’s own actions. Critics
claim that physicians should distinguish “personal conscience” from
“professional conscience,” or that physicians should balance one or both
against other considerations in deciding what to do in a given case.²⁶ Some
critics also suggest that a physician occasionally has an obligation to act
against conscience.
Such claims can make sense only if the conscience is a set of values. Then
one could have a professional conscience, a personal conscience, and
perhaps others as well. One could weigh up the conscience against other
considerations, or one conscience against another. One might even have
reason to act against conscience. But none of these construals makes sense
in light of what the conscience is: the faculty of reason that renders the final
judgment as regards what one ought to do, all things considered. So
understood, an individual has but one conscience and integrity requires that
her conscience cannot be split into components. She cannot take up her
judgment of conscience as one consideration among others. While a
physician might well have reason to reconsider an initial judgment in light
of new information, it can never be right to act against conscience, for in
doing so one is acting contrary to one’s final judgment about how one ought
to act. That is a paradigm case of acting unreasonably.
A Better Understanding of “Professional Responsibility”
The Way of Medicine not only has a more adequate construal of conscience
and its place in the practice of medicine than the PSM; it also possesses a
nonarbitrary standard for distinguishing refusals that align with the
physician’s vocation from those that contradict that vocation. Unless we are
to say that physicians may never refuse anything patients request,
physicians must have some criteria by which to distinguish between
justified and unjustified refusals.
The PSM turns, for such criterion, to the putative distinction between the
personal and the professional. As we show here, the problem with this
putative distinction is that the term “ personal” has no meaning in these
debates except “not professional,” and “ not professional” has no meaning
unless one can specify the content of the physician’s profession. As Abe’s
case demonstrates, without an objective standard for the medical profession,
saying that a concern is merely personal is not possible. Anything that
relates to the patient’s well-being can be considered a professional concern.
In the end, the category of “personal” distracts from and cloaks the fact that
the PSM cannot say what the physician’s profession requires beyond
accommodating patients’ considered, informed requests for legal and
technically feasible interventions. Without any objective standard to look to,
proponents of the PSM draw idiosyncratic and arbitrary lines between the
personal and the professional. For example, ACOG contends that
physicians must refuse policies that require them to report undocumented
patients to immigration authorities, because such policies conflict with
other professional norms, including the “primary principle of
nonmaleficence.”²⁷ In the same piece, however, ACOG takes it for granted
that physicians must refer patients for abortion, ignoring altogether
arguments that abortion violates the same principle of nonmaleficence.
Stahl and Emanuel claim that physicians might justifiably refuse assisted
suicide—a practice Emanuel has publicly opposed for decades—because
the practice is “currently controversial and subject to debate about whether
[it is] medically appropriate.”²⁸ However, they cannot bring themselves to
imagine that abortion and gender transition surgery are similarly
controversial and subject to similar debate. “Professional” responsibilities
thus emerge as sufficiently malleable to rule out what a writer dislikes and
to require what the writer affirms.
In seeking to say more about the “professional,” proponents of the PSM
often look to public and professional opinion in arbitrary and self-
contradictory ways or appeal to straw men to critique moral judgments in
medicine. On the one hand, they will refer to a “standard of care” and a
“consensus” as establishing the scope of what physicians must do. But in
the next breath they refer to the absence of consensus as the reason
physicians cannot justifiably refuse some intervention (because many
people disagree with the physician’s “personal” opinion). In a particularly
curious turn, Stahl and Emanuel claim that “health care professionals
voluntarily choose their roles and thus become obligated to provide,
perform, and refer patients for interventions according to the standards of
the profession.” Yet they then lament that the organizations that most
authoritatively establish the standards of the profession “all tend to accept
rather than question conscientious objection in health care.”²⁹ ACOG as
well as Stahl and Emanuel acknowledges deep societal disagreement about
whether abortion is permissible, yet both claim that abortion is standard
medical practice. “Although abortion is politically and culturally
contested,” Stahl and Emanuel write, “it is not medically controversial.”³⁰
So again, in the absence of clarity about the professional commitments of
medicine, proponents sometimes rely on and sometimes disavow claims of
consensus and controversy, adopting a whatever-works strategy in an
attempt to force their desired shape of conformity onto the profession.
The Way of Medicine, by contrast, distinguishes not between the
professional and the personal but between that which fulfills the physician’s
profession and that which departs from or contradicts that profession. In an
important sense, this merely distinguishes the reasonable from the
unreasonable, with attention to the particular vocation of practitioners of
medicine.
Critics worry that physicians’ refusals hide invidious discrimination under
the guise of conscience. Stahl and Emanuel say that to refuse to participate
in “gender reassignment surgery, or the use of contraception . . . is to allow
personal moral judgment to masquerade as medical practice.”³¹ ACOG
contends, “Finally, conscientious refusals should be evaluated on the basis
of their potential for discrimination.”³² But the Way of Medicine can
coherently condemn refusals that involve invidious discrimination without
abandoning either the notion of conscience or the physicians’ commitment
to the patient’s health.
The physician who refuses to care for patients with HIV because of
antipathy toward homosexuals or for patients of another race because of
racial prejudice or for criminals because of revulsion at their crimes violates
the constitutive professional obligation to seek the health of patients
precisely because they are sick, without regard to their other characteristics.
After all, the good of health is good for all persons. The professional
obligation to seek the health of patients is to be contrasted not with
conscience or with personal obligations but instead with failures of reason.
The solution to such failures is, in fact, sound exercise of conscience.
A Greater Respect for Pluralism
In contrast with the PSM, the Way of Medicine presents a workable,
peaceable approach to living with disagreement—with the pluralism that
defines our current age. Stahl and Emanuel, speaking for the PSM, write,
“Health care professionals who are unwilling to accept these limits [to
conscientious refusals] have two choices: select an area of medicine, such
as radiology, that will not put them in situations that conflict with their
personal morality or, if there is no such area, leave the profession.”³³
If the profession followed this logic to its conclusion, it would have to drum
out those who have the audacity to refuse interventions because they are not
required by or conducive to the patients’ health. This is a recipe for a
homogenous and authoritarian healthcare profession, one held together by
the forcible imposition of external norms: the norms of the legally
permitted, the technologically feasible, and what patients desire. Physicians
unwilling to work within these constraints would have to go.
Perhaps paradoxically, the Way of Medicine has much more flexibility. Let
us grant the “fact of reasonable pluralism.”³⁴ There is, we concede, no way
to recover (or forge anew) full agreement on the part of all physicians
regarding the moral obligations of medical practitioners. Nevertheless, if we
imagine a profession structured even minimally on a commitment to
patients’ health, the profession should allow conscientious refusals where
reasoned dispute exists about whether an intervention is consistent with that
goal.
In such circumstances, patients may face clinicians who make clear, in so
many words, that they do not believe what the patient seeks is what the
clinician should be doing. Patients in some areas, particularly rural areas,
may struggle to find clinicians who will provide interventions that are
available elsewhere. The profession will sustain in its ranks an ongoing
contention about what good medicine requires. The presence of differences
will push people to consider why they are making the choices they make
rather than taking practices for granted. Physicians will represent the
diversity of moral communities found in a society, and the range of choices
among philosophies of care will reflect the ongoing moral disagreements
among those communities. When people like Stahl and Emanuel insist that
physicians put their professional obligations first, we will insist that they
make an argument to show how physicians’ commitment to their patients’
health, objectively construed, requires them to participate in the
interventions in question.
We are optimistic that such a profession would come to recognize again that
certain practices are simply incompatible with physicians’ commitment to
patients’ health. Abortion, euthanasia, and sex reassignment surgeries, for
example, would be seen as simply not the business of physicians, though
treatment of pregnant mothers and their infant children, the dying, and those
suffering from gender dysphoria would be. There would still be
considerable room for disagreement, given the complexity of health and the
vagueness and indeterminacy around its boundaries—and that is to say
nothing of the scope for disagreement over how best to address the health of
a particular patient, given the inevitable limitations of medical knowledge
and technology.
The Way of Medicine recognizes that a profession must have something
that its practitioners profess in common; that something, for medicine, is the
patient’s health. The PSM gives, by contrast, a merely formal shared end:
the satisfaction of patients’ desires within what the law and medical science
allow, a goal that will frequently lead physicians to pursue contradictory
ends—for example, the life of this fetus, the death of that one. But within
the pursuit of health, the Way of Medicine sees room for professional
comity and amity: comity when the conscientious judgments of other
physicians are respected and amity when the profession is willing to tolerate
diverse moral and religious views if those are not essentially unjust. That is
a far cry from the PSM’s increasingly aggressive intolerance of
disagreement.
THE FUTURE OF MEDICINE
Elevating the PSM over the Way of Medicine will lead to three logical if
unintended consequences. First, any policy that constrains the scope of
conscientious refusals will thereby erode the possibility of conscientious
practice. It seems obvious that patients want their physicians to be
conscientious insofar as possible. Who wants a physician who is in the habit
of doing what he knows he should not do? Fortunately, individuals from
virtually all moral traditions and communities can conscientiously commit
themselves to caring for the sick. That is one reason the profession of
medicine has been able to maintain prestige and a measure of unity in a
society comprising many different moral communities. Yet efforts to reduce
the scope of conscientious refusals will gradually squeeze out or block from
entry all but those who are willing to make available to patients the full
range of legal technological interventions and to set aside their judgments
about which interventions are congruent with patients’ health.
Consider obstetrics and gynecology. If the PSM prevails, the obstetrics and
gynecology practice of the future will be hospitable only to those willing to
engage in elective abortion, sterilization, contraception, IVF, prenatal
genetic diagnosis, surrogate pregnancy, artificial insemination, cosmetic
genital surgery, gender transition surgery, and whatever comes next. Only a
minority of American physicians can cooperate conscientiously in all of
these legal, feasible, and yet morally controversial practices. Paradoxically,
patients’ choices will be reduced insofar as they will not be able to seek out
trained clinicians who share their judgment that such practices contradict
the purposes of medicine. So the process will go. Every time the scope of
conscientious refusal is narrowed, the pool of people who can be
conscientious physicians is reduced.
The second consequence is that by requiring physicians to do what patients
request, policies that constrain the scope of physician refusals will put
physicians and patients at odds with one another. The PSM already treats
the physician’s judgment as a threat to the patient. If physicians cannot
refuse patient requests, they will wonder when their patients might, with the
backing of legal sanction, ask them to act against their own understanding
and do that which they believe is unethical. By making physicians obey
patients, we will make patients a moral threat to their physicians.
The third consequence of reducing the scope of conscientious refusals is
that patients will lose the basis for trusting that their physicians are
committed to their good. Under the old model of paternalism, patients could
trust that physicians had committed themselves to their patients’ best
interests, albeit in a limited way—only insofar as those interests included
restoring and preserving health. The patients’ rights movement and the
doctrine of informed consent rightly qualified and delimited physicians’
commitment to pursue health. Out of respect for the persons they serve,
physicians are to act only with the permission of their patients. Because
health is neither the only nor the highest good, patients are authorized to
situate that good in relation to other concerns such as not being
overburdened by medical technology.
The PSM differs fundamentally: in it, patients not only qualify how their
health will be pursued but also decide what outcomes and states of affairs
their physicians will seek. Patients gain technicians committed to
cooperation and lose healers committed to their good. They gain control
over physicians but thereby divest physicians of responsibility. As a result,
patients will “often navigate treacherous medical terrain without adequate
medical guidance.”³⁵ Physicians can wash their hands of patients’
decisions, as long as they give their patients accurate information and
provide technically proficient “healthcare services.”
By asking physicians to set aside their consciences and detach from their
historical commitment to their patients’ health, the PSM contributes to a
crisis of medical morale, because the PSM quite literally demoralizes
medicine. If medicine merely provides desired services to maximize
patients’ vision of well-being, medicine’s pretense to moral seriousness will
be a charade and its attempts at professionalism a façade. Is it surprising
that today’s physicians, conditioned to think of themselves largely as mere
functionaries, suffer high rates of burnout?³⁶
There is a better way. That way involves conscientiousness and candor on
the part of physicians. Where there is ambiguity or a dispute arises about
whether a particular practice belongs in medicine, physicians and patients
can do their best to negotiate an accommodation that does not require either
to do what they believe is unethical. Rather than feign moral neutrality,
physicians will tell their patients frankly what their options are, which ones
the physician is willing to offer, and why the physician recommends one
over another. The scope of permissible accommodations will have to be set
through the political process, but we echo the conclusion reached by the
President’s Commission way back in 1982: “Considerable flexibility should
be accorded to patients and professionals to define the terms of their own
relationships.”³⁷
In conclusion, unless and until consensus is forged regarding the ends of
medicine, refusals of controversial practices cannot be shown to violate
physicians’ professional obligations. In the meantime, the practice of
medicine should be open to anyone who is willing to unreservedly commit
him- or herself to caring for the sick so as to preserve and restore their
health.
WORKING FOR HEALTH, CONTENDING FOR MEDICINE
We close by calling for healthcare professionals to strive conscientiously for
their patients’ health and in so doing to contend conscientiously for good
medicine. In some contexts, practicing the Way of Medicine will require
courage, even great courage. Trailblazers must sometimes walk alone. As
Martin Luther King Jr. said, “There comes a time when one must take a
position that is neither safe, nor politic, nor popular, but he must take it
because conscience tells him it is right.”³⁸
We do not suggest that everyone who finds the Way of Medicine
compelling should immediately set out to persuade every proponent of the
PSM that they are in error. Some are called to that task, but certainly not all
are. Nor do we recommend that physicians contend for their “rights”; we
are not advocating the antagonism of “rights talk” or pitting physicians’
rights against those of patients.
Rather, our suggestion is to practice medicine according to reason and to be
prepared to give an account of why you do what you do. Be committed to
the central good of medicine: patient health. Do nothing contrary to that
good, and align your practice to be in harmony with that good. Cultivate the
virtues of good medicine. Be a physician and a healer, not merely a
technician or a provider.
In short, be a good physician, practicing good medicine. Doing so will
function to the good of your patients and to your good as a doctor. It may
also persuade your colleagues and patients. As Leon Kass has noted, the
most basic truths often are better demonstrated in practice than in
argument.³⁹ By pursuing their patients’ health in time-tested ways that
respect the moral law, clinicians show others a better way of caring for their
patients—a way that has an integrity and even a beauty that may win over
those who at present are captive to the PSM.
Clinicians are not alone in this endeavor. This has been a book of medical
ethics, and medical ethicists and policymakers also must discern the shape
of the true practice of medicine and recognize its counterfeits. In providing
resources for that task, we hope to have made a modest contribution to the
renewal of medicine—a moral project that is ever worthy and ever
incomplete.
NOTES
PREFACE
1. David L. Sackett, William M. C. Rosenberg, J. A. Muir Gray, R. Brian
Haynes, and W. Scott Richardson, “Evidence-Based Medicine: What It Is
and What It Isn’t,” British Medical Journal 312, no. 7023 (1996): 71–72.
INTRODUCTION
1. It is important for us to clarify our use of “well-being” here. Our own
moral theory has a substantive account of human flourishing at its
foundations, and such flourishing could equally be designated as a form of
well-being. However, throughout this book, when we use the expression in
italics—well-being—we mean to designate the thin, preference- and desire-
satisfaction model that many medical ethicists presently use. We typically
italicize the first use of the expression in a chapter, and then rely on context
to make it clear which sense of “well-being” we mean.
2. As we discuss further in chapter 1, Beauchamp and Childress’s
enormously influential framework focuses on four principles: beneficence,
nonmaleficence, justice, and autonomy. See Tom L. Beauchamp and James
F. Childress, Principles of Biomedical Ethics, 7th ed. (New York: Oxford
University Press, 2013), 13–14.
3. See Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians, Not Conscripts
—Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.
4. H. Tristram Engelhardt, The Foundations of Bioethics, 2nd ed. (New
York: Oxford University Press, 1996), 7.
5. A 2016 U.S. News & World Report article showed that “nearly half of
U.S. physicians—49 percent—meet the definition for overall burnout.” In
addition, physicians’ “satisfaction with work-life balance is far lower than
that of others: 36 percent versus 61 percent.” See Steve Sternberg,
“Diagnosis: Burnout,” U.S. News & World Report, September 8, 2016. See
also Tait D. Shanafelt, Omar Hasan, Lotte N. Dyrbye, Christine Sinsky,
Daniel Satele, Jeff Sloan, and Colin P. West, “Changes in Burnout and
Satisfaction with Work-Life Balance in Physicians and the General US
Working Population between 2011 and 2014,” Mayo Clinic Proceedings 90,
no. 12 (2015): 1600–1613.
6. Michael J. Balboni and Tracy A. Balboni, Hostility to Hospitality:
Spirituality and Professional Socialization within Medicine (New York:
Oxford University Press, 2019).
7. As will become clear, we see two interrelated disagreements about
medicine: one over whether health should be the primary and largely
exclusive purpose of medicine and one over what health is.
8. Edelstein’s translation renders the Greek well: “I will neither give a
deadly drug to anybody if asked for it, nor will I make a suggestion to this
effect. Similarly I will not give to a woman an abortive remedy” (οὐ δώσω
δὲ όυδὲ ϕάπρμακον οὐδενὶ αἰτηθεὶς θανάσιμον οὐδὲ ὑϕηγήσομαι
ξυμβουλίην τοιήδε· ὁμοίως δὲ ούδὲ γυναικὶ πεσσὸν ϕθόριον δώσω).
Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943), 2–3.
9. For discussion of this claim in relation to the oath itself, see T. A.
Cavanaugh, Hippocrates’ Oath and Asclepius’ Snake (New York: Oxford
University Press, 2018).
10. C. S. Lewis, The Abolition of Man, or, Reflections on Education with
Special Reference to the Teaching of English in the Upper Forms of
Schools (San Francisco: HarperSanFrancisco, 2001), 43.
11. Gerald P. McKenney, To Relieve the Human Condition: Bioethics,
Technology, and the Body (Albany, NY: State University of New York
[SUNY] Press, 1997), 16. McKenney himself engages dialectically with a
number of previous critics, such as Hans Jonas Leon Kass and Stanley
Hauerwas, from whom we have also learned much.
12. Jeffrey P. Bishop, The Anticipatory Corpse: Medicine, Power, and the
Care of the Dying (Notre Dame, IN: University of Notre Dame Press,
2011).
13. Ibid., 9.
14. “Social imaginary” is a term that Charles Taylor explores in depth in his
Modern Social Imaginaries (Durham, NC: Duke University Press, 2004),
23.
15. Edmund D. Pellegrino, “The Internal Morality of Clinical Medicine: A
Paradigm for the Ethics of the Helping and Healing Professions,” Journal of
Medicine and Philosophy 26, no. 6 (2001): 559–79.
16. McKenney, To Relieve the Human Condition: Bioethics, 16.
17. See Edmund D. Pellegrino, The Philosophy of Medicine Reborn: A
Pellegrino Reader, ed. H. Tristram Engelhardt Jr. and Fabrice Jotterand
(Notre Dame, IN: University of Notre Dame Press, 2008); Leon R. Kass,
“Regarding the End of Medicine and the Pursuit of Health,” Public Interest
4 (1975): 11– 42; Alasdair MacIntyre, After Virtue: A Study in Moral
Theology, 3rd ed. (Notre Dame, IN: University of Notre Dame Press,
2007), 194. See also John Keown’s assessment of John Finnis: “A New
Father for the Law and Ethics of Medicine,” in Robert P. George and John
Keown, Reason, Morality, and Law: The Philosophy of John Finnis
(Oxford: Oxford University Press, 2014), 290–307.
18. See MacIntyre, After Virtue, 222.
CHAPTER ONEThe Way of Medicine
1. Alasdair MacIntyre, After Virtue: A Study in Moral Theory, 3rd ed.
(Notre Dame, IN: University of Notre Dame Press, 2007), 187.
2. For more on the difference between experiencing one’s work as a job
versus as a calling, see Robert N. Bellah, William M. Sullivan, Richard
Madsen, Ann Swindler, and Steven M. Tipton, Habits of the Heart:
Individualism and Commitment in American Life (Berkeley: University of
California Press, 1985); Amy Wrzesniewski, Clark McCauler, Paul Rozin,
and Barry Schwartz, “Jobs, Careers, and Callings: People’s Relations to
Their Work,” Journal of Research in Personality 31, no. 1 (1997): 21–33;
and Douglas T. Hall and Dawn E. Chandler, “Psychological Success: When
the Career Is a Calling,” Journal of Organizational Behavior 26, no. 2
(2005): 155–76.
3. Aristotle, Nicomachean Ethics, trans. David Ross (New York: Oxford
University Press, 2009), 1094a10.
4. For an introduction to debates about whether medicine has an intrinsic
telos and an internal morality, see the collection of papers on the subject in
the Journal of Medicine and Philosophy 26, no. 6 (2001).
5. See Jean Bethke Elshtain, “Why Science Cannot Stand Alone,”
Theoretical Medicine and Bioethics 29, no. 3 (2008): 161–69.
6. See Paul A. Lombardo, Three Generations, No Imbeciles: Eugenics, the
Supreme Court, and Buck v. Bell (Baltimore, MD: Johns Hopkins
University Press, 2010).
7. Aristotle, Nicomachean Ethics, 1094b25.
8. See, particularly, Leon Kass, “Regarding the End of Medicine and the
Pursuit of Health,” Public Interest 40 (1975): 11–42. See also Luke
Gormally, “The Good of Health and the Ends of Medicine,” in Holder
Zaborowski, Natural Moral Law in Contemporary Society (Washington,
DC: Catholic University of America Press, 2010), 264–84. Gormally argues
for views of both health and medicine very similar to ours.
9. See Christopher Boorse, “Health as a Theoretical Concept,” Philosophy
of Science 44 (1977): 542–73. Some proponents of an objective account,
such as Boorse, further understand health as merely the absence of disease.
In contrast, we claim that health is a positive quality and is, in this
important sense, prior to disease. Disease is knowable because it causes a
diminishment of health, but health is knowable apart from any disease.
What’s more, health can be diminished even in the absence of disease, as
when a person becomes unhealthy as a consequence of inactivity.
Therefore, the opposite of health is not disease but ill health—the privation
or absence of health.
10. For a discussion of evaluative concepts of health and disease see Jacob
Stegenga, Care and Cure: An Introduction to Philosophy of Medicine
(Chicago: University of Chicago Press, 2018), chaps. 1 and 2.
11. These syndromes include conditions such as chronic fatigue and
fibromyalgia. See Jiwon Helen Shin, John D. Yoon, Kenneth A. Rasinski,
Harold G. Koenig, Keith G. Meador, and Farr A. Curlin, “A Spiritual
Problem? Primary Care Physicians’ and Psychiatrists’ Interpretations of
Medically Unexplained Symptoms,” Journal of General Internal Medicine
28, no. 3 (2013): 392–98.
12. Because humans are ever incomplete, to be human is to be disabled and
dependent in significant measure, even if that dependence and disability are
not socially conspicuous.
13. Gerald P. McKenny, To Relieve the Human Condition: Bioethics,
Technology, and the Body (Albany, NY: State University of New York
[SUNY] Press, 1997).
14. Some have interpreted Kass as disregarding mental health. He was at
pains to distinguish pursuit of happiness from pursuit of health, but in our
view, his account of the well-working of the organism as a whole includes
mental health in the way we offer here.
15. Kass, “Regarding the End of Medicine,” 14; “Constitution of WHO:
Principles,” World Health Organization, April 7, 1948,
https://www.who.int/about/mission/en/.
16. Wendell Berry, “Health Is Membership,” in M. Therese Lysaught,
Joseph Kotva, Stephen E. Lammers, and Allen Verhey, ed. On Moral
Medicine (Grand Rapids, MI: Eerdmans, 2012), 420.
17. “Shalom” translates as “peace,” but, much like the term “health,”
“shalom” can be used analogically to refer to wholeness, completeness, and
blessedness. We find it notable that Jewish tradition requires Jews to live in
a community that has a physician, and although rabbis can also be
physicians—and often have been—Jewish tradition distinguishes the two
roles. See Immanuel Jakovovitz, Jewish Medical Ethics: A Comparative
and Historical Study of the Jewish Religious Attitude to Medicine and Its
Practice (New York: Block Publishing, 1975), 204–13.
18. Or, as Kass puts it, “in accordance with its specific excellences,” in
“Regarding the End of Medicine,” 29.
CHAPTER TWOThe Requirements of Practical Reason
1. Aristotle, Nicomachean Ethics, trans. David Ross (New York: Oxford
University Press, 2009).
2. We think of life and health as constituting one (complex) good. When
health is gone, no life remains. When life is present, some health remains.
In this book, wherever we use the term “health,” we mean this complex
basic good of life and health.
3. A commitment to human goods and human flourishing characterizes
much natural law theory, yet different theorists identify different goods as
basic or fundamental. Our list of basic goods is largely drawn from
Germain Grisez, Joseph Boyle, and John Finnis, “Practical Principles,
Moral Truth, and Ultimate Ends,” American Journal of Jurisprudence 32
(1987): 106–8, which, however, omits marriage. That good is present in
Aquinas’s list in Summa Theologiae, 1–2, q. 94, a.2.
4. For a consequentialist approach to some important questions of medical
ethics, see Helga Kuhse and Peter Singer, Should the Baby Live? The
Problem of Handicapped Infants (Oxford: Oxford University Press, 1985).
John Harris is an important defender of a broadly libertarian-
consequentialist approach to bioethics. See, e.g., Harris, The Value of Life
(New York: Routledge, 1995).
5. For further discussion, see Robert P. George and Christopher Tollefsen,
Embryo: A Defense of Human Life (New York: Doubleday, 2008), chap. 4:
“Moral Philosophy and the Early Human Being,” 83–111.
6. See Rachel Aviv, “What Does It Mean to Die?” New Yorker, February 5,
2018, www.newyorker.com.
7. National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research, “The Belmont Report,” Department
of Health, Education, and Welfare, April 18, 1979, www.hhs.gov.
8. Beauchamp and Childress’s first edition of Principles of Biomedical
Ethics was published in 1979. The book is now in its seventh edition and
has for decades been the most widely used medical ethics textbook in the
world.
9. Beauchamp refers to all of these as “alleged competitors” of principlism
in “Principlism and Its Alleged Competitors,” Kennedy Institute of Ethics
Journal 5, no. 3 (1995).
10. Beauchamp is quite explicit that there are no absolutes and that the
prohibition against killing is just the sort of prohibition an ethics needs to be
able to overcome (e.g., through compassionate aid-in-dying). See
Beauchamp, “Principlism and Its Alleged Competitors.”
11. Alfonso Gomez-Lobo also makes, and extends, a similar criticism of
principlism in his (with John Keown), Bioethics and the Human Goods: An
Introduction to Natural Law Bioethics (Washington, DC: Georgetown
University Press, 2015).
12. Immanuel Kant, Grounding for the Metaphysics of Morals., trans.
James W. Ellington, 3rd ed. (Indianapolis: Hackett, 1993 [1785]), 36.
13. John Rawls, “The Idea of Public Reason Revisited,” University of
Chicago Law Review 60, no. 3 (1997): 765–807.
14. A 2003 survey of US physicians from all specialties found that 71
percent agreed (32 percent strongly) with the statement “For me, the
practice of medicine is a calling.” See Farr A. Curlin, Lydia S. Dugdale,
John D. Lantos, and Marshall H. Chin, “Do Religious Physicians
Disproportionately Care for the Underserved?” Annals of Family Medicine
5, no. 4 (2007): 353–60. Among those who indicated that they have no
religion, 52 percent agreed (20 percent strongly), and among those who
indicated that they never attend religious services, 56 percent agreed (22
percent strongly) (data unpublished). A 2010 survey of U.S. primary care
physicians and psychiatrists found that more than 80 percent of both groups
agreed (about 40 percent strongly) with the same statement. See John D.
Yoon, Jiwon H. Shin, Andy L. Nian, and Farr A. Curlin, “Religion, Sense
of Calling, and the Practice of Medicine: Findings from a National Survey
of Primary Care Physicians and Psychiatrists,” Southern Medical Journal
108, no. 3 (2015): 189–95. Again, substantial majorities of the unreligious
agreed (more than 65 percent of physicians who report no religious
affiliation, indicate that they have no religion, and/or indicate that they
never attend religious services) (data unpublished).
15. Gaudium et spes, no. 24. See Vatican Council II: The Basic Sixteen
Documents; Constitutions, Decrees, Declarations, rev. ed., ed. Austin
Flannery (Northport, NY: Costello Publishing, 1996), 190.
16. For an accessible introduction to the idea of personal vocation, see
Germain Grisez and Russell Shaw, Personal Vocation: God Calls Everyone
(Huntington, IN: Our Sunday Visitor, 2003).
CHAPTER THREEThe Doctor-Patient Relationship
1. Here we focus on the contributions of Mark Siegler as well as Timothy E.
Quill and Howard Brody, but there have been many critiques of making
patient autonomy the regulative principle for medical ethics. Prominent
contributions to this literature include Carl Schneider, The Practice of
Autonomy: Patients, Doctors, and Medical Decisions (New York: Oxford
University Press, 1998); Ezekiel J. Emanuel and Linda L. Emanuel, “Four
Models of the Physician-Patient Relationship,” Journal of the American
Medical Association 267, no. 16 (1992): 2221–26; and David Thomasma,
“Beyond Medical Paternalism and Patient Autonomy: A Model of
Physician Conscience for the Physician-Patient Relationship,” Annals of
Internal Medicine 98, no. 2 (1983): 243–48.
2. Leon R. Kass, “Regarding the End of Medicine and the Pursuit of
Health,” Public Interest 4 (1975): 11–42.
3. Mark Siegler, “Searching for Moral Certainty in Medicine: A Proposal
for a New Model of the Doctor-Patient Encounter,” Bulletin of the New
York Academy of Medicine 57, no. 1 (1981): 56–69.
4. Ibid., 58.
5. President’s Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research, “Making Health Care Decisions:
The Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 35,
https://repository.library.georgetown.edu.
6. Some physicians can fail in this way for a long time and still be quite
useful to patients with respect to health, particularly subspecialists whose
work is more reducible to technique and technological production. One
thinks, for example, of the brain surgeon who is exquisitely committed to
doing a technically proficient job—even a job that deserves to be called
“beautiful,” but who could not care less about his patients’ flourishing. A
patient might reasonably seek out such a surgeon, even over the surgeon
who fasts and prays for the healing of the patients he carries in his heart, if
the latter surgeon is not as technically gifted.
7. Somewhat paradoxically, while the PSM embraces physicians’ engaging
in practices that violate traditional boundaries by damaging health, it also
opposes physicians engaging in practices such as praying with patients,
because these practices, while not injuring health, putatively cross
professional boundaries. See Farr A. Curlin and Daniel E. Hall, “Strangers
or Friends? A Proposal for a New Spirituality-in-Medicine Ethic,” Journal
of General Internal Medicine 20, no. 4 (2005): 370–74, for a deeper
analysis of debates about physicians paying attention to the spiritual
concerns of patients.
CHAPTER FOURAutonomy and Authority
1. The 1979 Belmont Report and the 1982 “Making Health Care Decisions”
report both focused on the importance of informed consent—the former
with respect to the research context, the latter with respect to clinical
practice. See National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research, “The Belmont Report,” Department
of Health, Education, and Welfare, April 18, 1979, www.hhs.gov. See also
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, “Making Health Care Decisions: The
Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 35,
https://repository.library.georgetown.edu.
2. Immanuel Kant, Grounding for the Metaphysics of Morals, trans. James
W. Ellington, 3rd ed. (Indianapolis: Hackett, 1993 [1785]), 30.
3. A different formulation of the categorical imperative was cited in chapter
2; Kant believed them to be equivalent despite their apparent differences.
4. For the term “expressive individualism,” see Robert N. Bellah, William
M. Sullivan, Richard Madsen, Ann Swindler, and Steven M. Tipton, Habits
of the Heart: Individualism and Commitment in American Life (Berkeley:
University of California Press, 1985), 27.
5. For an accessible philosophical history of this cultural emphasis on
authentic self-expression and self-development, see Charles Taylor, The
Ethics of Authenticity (Cambridge, MA: Harvard University Press, 1991).
6. Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833
(SCOTUS, 1992), 861.
7. Stephen Darwall, “Two Kinds of Respect,” Ethics 88, no. 1 (1977): 36–
49.
8. Ms. Maynard was a young woman from California who moved to
Oregon to die by physician-assisted suicide. We discuss her case further in
chapter 9. See Britanny Maynard, “My Right to Death with Dignity at 29,”
CNN, November 2, 2014, www.cnn.com.
9. See, for example, Health Occupations—Conversion Therapy for Minors
—Prohibition (Youth Mental Health Protection Act), Annotated Code of
Maryland, Article—Health Occupations, Section 1–212.1.
10. See Ronit Y. Stahl, and Ezekiel J. Emanuel, “Physicians, Not Conscripts
—Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.
11. For further discussion of this point, see Robert P. George, Making Men
Moral: Civil Liberties and Public Morality (Oxford: Oxford University
Press, 1995), chap. 6.
12. Of course, patients’ medical conditions frequently impair their
autonomy, sometimes to the point that they cannot be said to be self-
governing. How physicians should respond to and care for such patients is a
topic we return to in chapter 8.
13. John Finnis, Natural Law and Natural Rights (Oxford: Oxford
University Press, 2011), 232.
14. Mark Siegler, “Searching for Moral Certainty in Medicine: A Proposal
for a New Model of the Doctor-Patient Encounter,” Bulletin of the New
York Academy of Medicine 57, no. 1 (1981): 56–69.
15. For further discussion of this question, see Joseph Boyle, “Personal
Responsibility and Freedom in Health Care: A Natural Law Perspective,” in
Persons and Their Bodies: Rights, Responsibilities, Relationships, ed. Mark
Cherry (Dordrecht, Netherlands: Springer, 1999): 111–41.
16. We return to these ideas in our discussion of medical decisions at the
end of life in chapters 8 and 9.
17. See Timothy E. Quill and Howard Brody, “Physician Recommendations
and Patient Autonomy: Finding a Balance between Physician Power and
Patient Choice,” Annals of Internal Medicine 125, no. 9 (1996): 763–69.
CHAPTER FIVEThe Rule of Double Effect
1. Are there other standards? We think that there are, but that many
standards are in one way or another reducible to fairness or vocation. So,
for example, one’s having promised something bears on what is and is not a
proportionate reason for doing that thing; but the importance of promising
clearly is related to both fairness and vocation.
2. In some cases, prioritizing is built into a good’s nature. Marriage, for
example, requires prioritizing marriage above some other goods, and the
good of religion, as we argue, requires that religion be put before all other
commitments.
3. This way of understanding intention is simpler than that put forth by
some philosophers, who, with Thomas Aquinas, identify an “interior
object” and an “exterior object” of the human act roughly, where we talk
only about “ends” and “means.” Nevertheless, we think that our concept
largely tracks traditional natural law discussions of intention. Aquinas
himself frequently speaks as we do: intention encompasses the end and the
means. This simplicity bears fruit, as we discuss below, in our simple
formulation of the rule of double effect.
4. Fairness may seem obvious. But vocation? We think so, as it may be that
the explorers, recognizing the need for teamwork and trust, have solemnly
promised to one another to “leave no man behind” even if by keeping this
promise they will all die. Our point is not that such a commitment is wise
but that commitments can specify obligations that reasonably prevent us
from doing what we would do if we had not made such commitments.
5. Christopher Tollefsen, “Is a Purely First Person Account of Human
Action Defensible?” Ethical Theory and Moral Practice 9, no. 4 (2006):
441–60, and Tollefsen, “Double Effect and Two Hard Cases in Medical
Ethics,” American Catholic Philosophical Quarterly 89, no. 3 (2015): 407–
20.
6. Sulmasy and Pellegrino describe these four conditions in the following
way: “The traditional rule of double effect specifies that an action with 2
possible effects, one good and one bad, is morally permitted if the action:
(1) is not in itself immoral, (2) is undertaken only with the intention of
achieving the possible good effect, without intending the possible bad effect
even though it may be foreseen, (3) does not bring about the possible good
effect by means of the possible bad effect, and (4) is undertaken for a
proportionately grave reason.” Daniel P. Sulmasy and Edmund D.
Pellegrino, “The Rule of Double Effect: Clearing Up the Double Talk,”
Archives of Internal Medicine 159, no. 6 (1999): 545–50.
7. See, for example, Timothy E. Quill, Rebecca Dresser, and Dan W. Brock,
“The Rule of Double Effect—A Critique of Its Role in End-of-Life
Decision Making,” New England Journal of Medicine 337, no. 24 (1997):
1768–71.
CHAPTER SIXSexuality and Reproduction
1. The FDA approved the first oral contraceptive in 1960. For a history of
the oral contraceptive, see Bernard Asbell, The Pill: A Biography of the
Drug That Changed the World (New York: Random House, 1995).
2. Mark Siegler and Dudley Goldblatt, “Clinical Intuition: A Procedure for
Balancing the Rights of Patients and the Responsibilities of Physicians,” in
The Law—Medicine Relation: A Philosophical Exploration, ed. S. F.
Spicker, J. M. Healey, and H. T. Engelhardt (Dordrecht, Netherlands:
Springer, 1981), 25–26.
3. See T. A. Cavanaugh, Hippocrates’ Oath and Asclepius’ Snake (New
York: Oxford University Press, 2018), chap. 1.
4. Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833
(SCOTUS, 1992), 856.
5. Part of the argument for contraception is that it will reduce the number of
abortions by reducing the number of unplanned pregnancies. That seems
intuitive enough, but evidence suggests that abortion rates decline only
among users of contraception methods that have very low failure rates and
make few demands on users (e.g., intrauterine devices and implantable
contraceptives). More common methods, including the oral contraceptive
pill, do not seem to reduce abortion rates, and in some cases are associated
with higher abortion rates. See William Saletan, “Does Contraception
Reduce Abortions?” Slate, September 1, 2015, www.slate.com.
6. A prominent website for these practitioners states, “Unlike common
suppressive or destructive approaches, NaProTECHNOLOGY works
cooperatively with the procreative and gynecologic systems. When these
systems function abnormally, NaProTECHNOLOGY identifies the
problems and cooperates with the menstrual and fertility cycles that correct
the condition, maintain the human ecology, and sustain the procreative
potential” (emphasis in original). See “NaProTECHNOLOGY,” Pope Paul
VI Institute for the Study of Human Reproduction,
www.naprotechnology.com/.
7. Oliver O’Donovan, Ali Al Chami, and Melanie Davies, “Ovarian
Hyperstimulation Syndrome,” Obstetrics, Gynaecology, and Reproductive
Medicine 25, no. 2 (2015): 43–48.
8. See Christopher Tollefsen, “In Vitro Fertilization Should Not Be an
Option for a Woman,” in Contemporary Debates in Bioethics, ed. Arthur L.
Caplan and Robert Arp (Chichester, UK: John Wiley & Sons, 2014), 451–
59.
9. What Jules and patients like him hope for must be distinguished, of
course, from medical attempts to repair damaged secondary sex
characteristics and sexual capacities, including attempts to resolve sex
ambiguity. More on that below.
10. This distinction has applications outside the natural order also. For
example, Thomas Aquinas gives us an account of law as an ordinance of
reason, given by one with authority, for the common good, and
promulgated. This is the paradigm case, law in good working order. But it is
easy to find examples of law that do not share all these features of the
paradigm. To pick an obvious example, Jim Crow laws that enforced
segregation in the American South did not display these features and as
such do not stand as evidence of the diversity of law, properly understood,
as much as one among many sordid examples of the distortion of law into
something that has the appearance of law but contradicts its purpose. Our
capacity to recognize this distinction makes it possible for us to see how
unjust laws can, in many circumstances, be justly broken.
11. Kenneth Miller, “Together Forever,” LIFE, April 1, 1996, 44–54.
12. Congenital vaginal agenesis is a rare condition (experienced by about 1
in 4,000 females) in which a vagina does not form properly before birth.
Reconstructive surgeries can be performed to fashion a vagina. See G.
Creatsas and E. Deligeoroglou, “Vaginal Aplasia and Reconstruction,” Best
Practice and Research: Clinical Obstetrics and Gynaecology 24, no. 2
(2010): 185–91. In addition, penis transplant patients have successfully
recovered urinary and sexual function. See
https://www.reuters.com/article/us-safrica-transplant/worlds-first-penis-
transplant-patient-to-father-a-child-idUSKBN0OS1HW20150612.
13. For this reason, we believe, with Paul McHugh, that it was an error for
physicians at institutions such as Johns Hopkins to attempt to help males
born with abnormal genitalia by constructing female “genitalia” and
treating these young boys like girls. Such surgeries did not correct a
deficiency in physical health and arguably generated significant mental
health problems for their subjects. See Paul R. McHugh, “Surgical Sex,”
First Things 147 (2004): 34–38.
14. Obviously sex-change surgeries irreversibly damage the reproductive
capacities of patients, but even administering hormones to delay or block
puberty can lead to irreversible damage to patients like Jules. Indeed, at
present there is no reliable way to suppress pubertal development in males
without the risk of rendering the patients permanently sterile.
15. A paradigmatic example of this charge among practitioners of the new
medicine is found in Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians,
Not Conscripts: Conscientious Objection in Health Care,” New England
Journal of Medicine 376, no. 14 (2017): 1382. We discuss Stahl and
Emanuel at length in chapter 10. For the Obama administration’s Health
and Human Services mandate asserting that it is unlawful to categorically
refuse to participate in gender transition services, see Department of Health
and Human Services, “Nondiscrimination in Health Programs and
Activities,” Federal Register 81, no. 96 (2016): 31376–473.
CHAPTER SEVENAbortion and Unborn Human Life
1. The American College of Obstetricians and Gynecologists’ official
policy on abortion says that “induced abortion is an essential component of
women’s health care.” See “Abortion Policy,” July 2011, www.acog.org.
2. Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943), 3.
3. W. H. S. Jones. The Doctor’s Oath: An Essay in the History of Medicine
(New York: Cambridge University Press, 1924), 23.
4. On human rights and the 1948 Geneva Declaration, see Andreas Frewer,
“Human Rights from the Nuremberg Doctors Trial to the Geneva
Declaration: Persons and Institutions in Medical Ethics and History,”
Medical Health Care and Philosophy 13 (2010): 259–68. For a discussion
of the changes made in the most recent revision of the declaration, see
Ramin Walter Parsa-Parsi, “The Revised Declaration of Geneva: A
Modern-Day Physician’s Pledge,” Journal of the American Medical
Association 318, no. 20 (2017): 1971–72. For past versions of the
declaration, see World Medical Association, “Declaration of Geneva,”
www.wma.net.
5. The American Medical Association’s current position on abortion is terse
and noncommittal: “The issue of support of or opposition to abortion is a
matter for members of the AMA to decide individually, based on personal
values or beliefs. The AMA will take no action which may be construed as
an attempt to alter or influence the personal views of individual physicians
regarding abortion procedures.” American Medical Association, “Abortion
H-5.990,” last modified 2009, https://policysearch.ama-assn.org.
6. Keith L. Moore, T. V. N. Persaud, and Mark G. Torchia, The Developing
Human: Clinically Oriented Embryology, 10th ed. (Philadelphia: Elsevier,
2016), 11.
7. For interesting evidence regarding this point, see Helen Pearson, “Your
Destiny, from Day One,” Nature 418, no. 6893 (2002): 14–15.
8. See, in particular, Robert P. George and Christopher Tollefsen, Embryo:
A Defense of Human Life, 2nd ed. (Princeton, NJ: Witherspoon Institute,
2011).
9. On December 10, 1948, the United Nations ratified the Universal
Declaration of Human Rights. See United Nations, “Universal Declaration
of Human Rights,” www.ohchr.org.
10. See Martin Rhonheimer, Vital Conflicts in Medical Ethics: A Virtue
Approach to Craniotomy and Tubal Pregnancies, ed. William F. Murphy
(Washington, DC: Catholic University of America Press, 2009).
11. Judith Jarvis Thomson, “A Defense of Abortion” Philosophy & Public
Affairs 1, no. 1 (1971): 47–66.
12. Ibid., 48.
13. Ibid.
14. See Jeffrey Reiman’s discussion of the constitutional right to abortion in
Critical Moral Liberalism: Theory and Practice (Lanham, MD: Rowman
and Littlefield, 1996). John Finnis criticizes Reiman’s position in “Public
Reason, Abortion, and Cloning,” Valparaiso University Law Review 32
(1998): 361–82.
15. Consider, for example, a mother with no other children, who has a
loving husband, strong family support, and a strong devotion to unborn
human life; she works, let us suppose, for a pro-life counseling group. Such
a mother (but not only such a one) could, we think, reasonably choose in
favor of saving the baby’s life. She would be assured the child would be
loved and well cared for, and her calling to pro-life witness could lead her
reasonably to this choice. But another mother, equally devoted to the
unborn but with several other children in need of maternal care, might, in
her circumstances, choose in favor of saving her own life. The decision, we
stress, is up to her, and she is not without resources for guidance in making
that decision. But we think there are limited external grounds on which a
third party could criticize one or the other choice.
16. St. Joseph’s Hospital and Medical Center, “Bishop Olmsted
Announcement: Frequently Asked Questions,” accessed May 7, 2018,
www.dignityhealth.org.
17. Nicanor Pier Giorgio Austriaco, “Abortion in a Case of Pulmonary
Arterial Hypertension,” National Catholic Bioethics Quarterly 11, no. 3
(2011): 514.
18. For a comparison of the effects on fertility of salpingotomy and
salpingectomy, see Femke Mol, Norah M. van Mello, Annika Strandell,
Karin Strandell, and Davor Jurkovic, “Salpingotomy versus Salpingectomy
in Women with Tubal Pregnancy,” Lancet 383, no. 9927 (2014): 1483–89,
and Xiaolin Cheng, Xiaoyu Tian, Zhen Yan, Mengmeng Jia, Jie Deng, Ying
Wang, and Dongmei Fan, “Comparison of the Fertility Outcome of
Salpingotomy and Salpingectomy in Women with Tubal Pregnancy: A
Systematic Review and Meta-Analysis,” PLoS One 11, no. 3 (2016):
e0152343. For the American College of Obstetricians and Gynecologists’
recommendations, see “ACOG Practice Bulletin: Clinical Management
Guidelines for Obstetrician-Gynecologists, no. 193,” Obstetrics and
Gynecology 131 (2018): 91–103, www.acog.org.
19. For an argument, which seems sound to us, that the use of methotrexate
does not necessarily involve intentional killing, see Christopher Kaczor,
“The Ethics of Ectopic Pregnancy: A Critical Reconsideration of
Salpingotomy and Methotrexate,” Linacre Quarterly: A Journal of the
Philosophy and Ethics of Medical Practice 76 (2009): 265–82.
CHAPTER EIGHTMedicine at the End of Life
1. Leon R. Kass, “Regarding the End of Medicine and the Pursuit of
Health,” Public Interest 4 (1975): 18.
2. World Health Organization, “WHO Definition of Palliative Care,”
www.who.int.
3. See Timothy E. Quill, Bernard Lo, and Dan W. Brock, “Palliative
Options of Last Resort: A Comparison of Voluntarily Stopping Eating and
Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary
Active Euthanasia,” Journal of the American Medical Association 278, no.
23 (1997): 2099–104; Pieter J. J. Sauer and Eduard Verhagen, “The
Groningen Protocol—Euthanasia in Severely Ill Newborns,” New England
Journal of Medicine 352, no. 10 (2005): 959–62.
4. National Hospice and Palliative Care Organization, “Preamble to
NHPCO Standards of Practice,” www.nhpco.org.
5. Atul Gawande, Being Mortal: Medicine and What Matters in the End
(New York: Metropolitan Books, 2014).
6. A 2006 study found that “on average, patient-designated and next-ofkin
surrogates incorrectly predict patients’ end-of-life treatment preferences in
one third of cases” (David I. Shalowitz, Elizabeth Garrett-Mayer, and David
Wendler, “The Accuracy of Surrogate Decision Makers,” Archives of
Internal Medicine 166, no. 5 (2006): 497. In addition, Sharma et al. found
that family members are also highly inaccurate in predicting how their
loved ones want decisions to be made. See Rashmi K. Sharma, Mark T.
Hughes, Mari T. Nolan, Carrie Tudor, Joan Kub, Peter B. Terry, and Daniel
P. Sulmasy, “Family Understanding of Seriously Ill Patient Preferences for
Family Involvement in Healthcare Decision Making,” Journal of General
Internal Medicine 26, no. 8 (2011): 881–86.
7. The Hippocratic tradition affirmed that the physician should
acknowledge and respect the limits of medicine. Consider this statement
attributed to Hippocrates in “The Art”: “For if a man demand from an art a
power over what does not belong to the art, or from nature a power over
what does not belong to nature, his ignorance is more allied to madness
than to lack of knowledge. For in cases where we may have the mastery
through the means afforded by a natural constitution or by an art, there we
may be craftsmen, but nowhere else. Whenever therefore a man suffers
from an ill which is too strong for the means at the disposal of medicine, he
surely must not even expect that it can be overcome by medicine.”
Hippocrates, “The Art,” in Hippocrates, vol. 2, trans.W. H. S. Jones
(Cambridge, MA: Harvard University Press, 1923), 204–5.
CHAPTER NINELast-Resort Options
1. For a discussion of the good of solidarity in this context, see Joseph
Boyle, “A Case for Sometimes Tube-Feeding Patients in Persistent
Vegetative State,” in Euthanasia Examined: Ethical, Clinical, and Legal
Perspectives, ed. John Keown (Cambridge: Cambridge University Press,
1995), 189–99.
2. See Alan Meisel, Bernard Lo, Timothy E. Quill, and Dan W. Brock,
“Last-Resort Options for Palliative Sedation,” Annals of Internal Medicine
151, no. 6 (2009): 421–24, and, from earlier, Timothy E. Quill, Bernard Lo,
and Dan W. Brock, “Palliative Options of Last Resort: A Comparison of
Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-
Assisted Suicide, and Voluntary Active Euthanasia,” Journal of the
American Medical Association 278, no. 23 (1997): 2099–104.
3. See Farr A. Curlin, “Palliative Sedation: Clinical Context and Ethical
Questions,” Theoretical Medicine and Bioethics 39, no. 3 (2018): 197–209.
4. Ira Byock, Dying Well: Peace and Possibilities at the End of Life (New
York: Riverhead Books, 1998), 193–216.
5. Ibid., 215.
6. For an elaboration of this account of suffering, see Christopher Tollefsen,
“Suffering, Enhancement, and Human Goods,” Quaestiones Disputatae 5
(2015): 104–17.
7. Lord Marchmain’s conversion occurs in the final chapter of Evelyn
Waugh’s Brideshead Revisited (New York: Back Bay Books, 1999). The
miniseries, directed by Charles Sturridge, was produced by Granada
Television and released in 1981.
8. See Curlin, “Palliative Sedation.”
9. Arthur Caplan, “Bioethicist Caplan: Brittany Maynard Did Nothing
Unethical,” USA Today, November 4, 2014, www.usatoday.com.
10. See Oregon Public Health Division, “Oregon’s Death with Dignity Act
—2014,” Oregon Health Authority, www.oregon.gov.
11. Brittany Maynard, “My Right to Death with Dignity at 29,” CNN,
November 2, 2014, www.cnn.com.
12. Oregon Public Health Division, “Oregon’s Death with Dignity Act—
2014.”
13. Ibid.
14. Anthony L. Back, Timothy E. Quill, and Susan D. Block, “Responding
to Patients Requesting Physician-Assisted Death: Physician Involvement at
the Very End of Life,” Journal of the American Medical Association 315,
no. 3 (2016): 245–46.
15. See www.compassionandchoices.org.
16. Center for Health Statistics and Informatics, “End of Life Option Act,”
California Department of Public Health, www.cdph.ca.gov.
17. Ian Lovett and Richard Pérez-Peña, “California Governor Signs
Assisted Suicide Bill into Law,” New York Times, October 5, 2015,
www.nytimes.com.
18. Robert A. Burt, “The Suppressed Legacy of Nuremberg,” Hastings
Center Report 26, no. 5 (1996): 33.
19. Ibid.
20. The patient’s name and some details have been altered to preserve
confidentiality.
21. Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943, 3.
22. American Medical Association, “Physician Assisted Suicide H-
140.952,” last modified 2009, https://policysearch.ama-assn.org.
23. Public Health Division, “Oregon Death with Dignity Act, 2017, Data
Summary,” Oregon Health Authority, February 9, 2018, www.oregon.gov.
24. Disease Control and Health Statistics Division, “Washington State
Death with Dignity Act Report,” Washington State Department of Health,
March 2018, www.doh.wa.gov.
25. Black Americans are significantly less likely to use hospice services.
The 2016 “Facts and Figures” published by the National Hospice and
Palliative Care Organization and revised in 2018 shows that 8.2 percent of
Medicare hospice patients were African American, compared to 86.8
percent who were white. See “Facts and Figures: Hospice Care in
America,” National Hospice and Palliative Care Organization, revised April
2018, www.nhpco.org. See also Kimberly S. Johnson, Maragatha
Kuchibhatla, and James A. Tulsky, “What Explains Racial Differences in
the Use of Advance Directives and Attitudes toward Hospice Care?,”
Journal of the American Geriatrics Society 56, no. 10 (2008): 1953–58.
26. Diane Coleman, “Assisted Suicide Laws Create Discriminatory Double
Standard for Who Gets Suicide Prevention and Who Gets Suicide
Assistance: Not Dead Yet Responds to Autonomy, Inc.,” Disability and
Health Journal 3 no. 1 (2010): 39–50.
27. Richard M. Zaner, A Critical Examination of Ethics in Health Care and
Biomedical Research (Dordrecht, Netherlands: Springer, 2015), 30–32.
CHAPTER TENConscientious Medicine
1. These arguments lean heavily on a moral distinction and tension between
the personal and the professional, whether posed as personal moral values
versus professional ethical obligations, personal conscience versus
professional conscience, or duties related to personal versus professional
integrity. For prominent examples of such arguments, see Julian Savulescu,
“Conscientious Objection in Medicine,” British Medical Journal 332
(2006): 294–97; Julian Savulescu and Udo Schuklenk, “Doctors Have No
Right to Refuse Medical Assistance in Dying, Abortion or Contraception,”
Bioethics 31, no. 3 (2017): 162–70; Udo Schuklenk and Ricardo Smalling,
“Why Medical Professionals Have No Moral Claim to Conscientious
Objection Accommodation in Liberal Democracies,” in Journal of Medical
Ethics 43, no. 4 (2017): 234–40; Robert F. Card, “Reasonability and
Conscientious Objection in Medicine: A Reply to Marsh and an Elaboration
of the Reason-Giving Requirement,” Bioethics 28, no. 6 (2014): 320–26;
Eva LaFollette and Hugh LaFollette, “Private Conscience, Public Acts,”
Journal of Medical Ethics 33, no. 5 (2007): 249–54; Howard Brody and
Susan S. Night, “The Pharmacist’s Personal and Professional Integrity,”
American Journal of Bioethics 7, no. 6 (2007): 16–17.
2. Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians, Not Conscripts—
Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.
3. The Professional Obligations and Human Rights policy was issued by the
College of Physicians and Surgeons of Ontario, which has state-sanctioned
authority over medical practitioners. The college published a fact sheet to
explain the policy, www.cpso.on.ca. See The Christian Medical and Dental
Society of Canada v. College of Physicians and Surgeons of Ontario, 2018
ONSC 579, www.canlii.org.
4. Illinois General Assembly, Public Act 099-0690, SB 1564, July 29, 2016,
www.ilga.gov.
5. “Swedish Anti-Abortion Midwife Loses Court Case,” BBC, April 13,
2017.
6. Stahl and Emanuel, “Physicians, Not Conscripts,” 1382.
7. Ibid., emphasis added.
8. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385: The Limits of Conscientious Refusal in
Reproductive Medicine,” Obstetrics & Gynecology 110, no. 5 (2007): 1205,
emphasis added.
9. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.
10. Eva LaFollette and Hugh LaFollette, “Private Conscience, Public Acts,”
Journal of Medical Ethics 33, no. 5 (2007): 249–54.
11. Howard Brody and Susan S. Night, “The Pharmacist’s Personal and
Professional Integrity,” American Journal of Bioethics 7, no. 6 (2007): 16–
17.
12. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.
13. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1205.
14. Dan W. Brock, “Conscientious Refusal by Physicians and Pharmacists:
Who Is Obligated to Do What, and Why?,” Theoretical Medicine and
Bioethics 29, no. 3 (2008): 187–200.
15. On page 1205 of the “ACOG Committee Opinion No. 385,” they write,
“The third criterion for evaluating authentic conscientious refusal is the
scientific integrity of the facts supporting the objector’s claim. Core to the
practice of medicine is a commitment to science and evidence-based
practice.”
16. Stahl and Emanuel argue that those who refuse patient requests should
be treated like conscientious objectors to military service, who “are required
to perform alternative service.” Stahl and Emanuel, “Physicians, Not
Conscripts,” 1383.
17. “The military conscientious objector faced real penalties—fines,
imprisonment, or alternative service—for resisting conscription.” Stahl and
Emanuel, “Physicians, Not Conscripts,” 1384.
18. Julian Savulescu, “Conscientious Objection in Medicine,” British
Medical Journal 332 (2006): 294.
19. Thomas Aquinas, Summa Theologiae, 1-1, q.79, aa12, 13.
20. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1204.
21. In response to pharmacists who refused to fill prescriptions for
emergency contraception, before the FDA made the drug available over the
counter, Brody and Night wrote that they “suspect that what the
‘conscientious’ pharmacist actually objects to, but does not have the nerve
to say outright, is the possibility that a woman can engage in sexual activity
without having to face the ‘moral’ consequences of her potentially illicit
act.” Brody and Night, “Pharmacist’s Personal and Professional Integrity,”
17.
22. Thomasma defines the conscience of the physician as prudential
judgment, adding, “Prudential judgment encompassing medical and value
factors in the physician-patient relation is a hallmark of professional
conduct.” David Thomasma, “Beyond Medical Paternalism and Patient
Autonomy: A Model of Physician Conscience for the Physician-Patient
Relationship,” Annals of Internal Medicine 98, no. 2 (1983): 244.
23. Stahl and Emanuel, “Physicians, Not Conscripts,” 1380.
24. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1205, emphasis added.
25. Stahl and Emanuel, “Physicians, Not Conscripts,” 1384.
26. Consider this statement in “ACOG Committee Opinion No. 385”:
“Although respect for conscience is a value, it is only a prima facie value,
which means it can and should be overridden in the interest of other moral
obligations that outweigh it in a given circumstance” (1207).
27. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1204.
28. Stahl and Emanuel, “Physicians, Not Conscripts,” 1382.
29. Ibid., 1380–81.
30. Ibid, 1383.
31. Ibid.
32. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1206.
33. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.
34. See John Rawls, Political Liberalism (New York: Columbia University
Press, 1993).
35. Timothy E. Quill and Howard Brody, “Physician Recommendations and
Patient Autonomy: Finding a Balance between Physician Power and Patient
Choice,” Annals of Internal Medicine 125, no. 9 (1996): 765.
36. See Steve Sternberg, “Diagnosis: Burnout,” U.S. News & World Report,
September 8, 2016. See also Tait D. Shanafelt, Omar Hasan, Lotte N.
Dyrbye, Christine Sinsky, Daniel Satele, Jeff Sloan, and Colin P. West,
“Changes in Burnout and Satisfaction with Work-Life Balance in
Physicians and the General US Working Population between 2011 and
2014,” Mayo Clinic Proceedings 90, no. 12 (2015): 1600–1613.
37. President’s Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research, “Making Health Care Decisions:
The Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 38,
https://repository.library.georgetown.edu.
38. Martin Luther King Jr., “A Proper Sense of Priorities” (speech),
February 6, 1968, Washington, DC, text available at
http://www.aavw.org/special_features/speeches_speech_king04.html.
39. This was said to one of the authors (Curlin) in conversation.
INDEX
ability, 48–49
abortion
American Medical Association on, 211n5
autonomy and, 67
beginning of human being’s existence and, 115–17
consent and, 172
contraception and, 208n5
contraception vs., 98–99
defining, 126
in ectopic pregnancy, 126, 129–31
embryology and, 116–17
end-of-life killing vs., 172–73
Golden Rule and, 118
Hippocratic Oath and, 113–14
intention and, 120–21, 128, 130
justice and, 112
life-saving, 124–29
personhood and, 121–24
privacy and, 119–20
in provider of services model, 112, 119
as public matter, 119–20
rule of double effect and, 124–29
as self-defense, 129
in Way of Medicine, 113–14
See also contraception
advance directives, 58–59, 146–47. See also end-of-life medicine; last-
resort options
ANH. See artificial nutrition and hydration (ANH)
anorexia, 110
antibiotics, 56–58, 85–87
Anticipatory Corpse, The (Bishop), 9
Aquinas, Thomas, 129, 187, 203n3, 207n3, 209n10
Aristotle, 8, 20–21, 25, 34, 107, 188
artificial nutrition and hydration (ANH), 160–65
assisted reproduction, 99–104
assisted suicide, 69–70, 170–72. See also end-of-life medicine; last-resort
options
Austriaco, Nicanor, 128
authenticity, 67, 119, 141
authority
autonomy vs., 72–73, 76–77
end-of-life medicine and, 139, 150
of expertise, 73
limits of, 77–78
in provider of services model, 3, 75
solidarity and, 63
vocation and, 75–76
in Way of Medicine, 78
autonomy, 205n1
assisted suicide and, 69–70, 170–71
authority vs., 72–73, 76–77
commitments and, 71–72
end-of-life medicine and, 141
as greatest human good, 70
importance of, 70–72
in Kant, 67
in medical ethics, 65–66
misunderstandings about, 66–70
paternalism and, 52
principlism and, 14, 41, 43
in provider of services model, 2, 69
radical, 67–70
respect vs., 44
solidarity and, 62
in Way of Medicine, 69
Bacon, Francis, 8
Beauchamp, Thomas, 14, 41, 43, 199n2, 204nn8–10
Belmont Report, 41, 206n1
beneficence, 14, 41, 43, 55
Bentham, Jeremy, 37
Berry, Wendell, 30
Bishop, Jeffrey, 8–9
Boorse, Christopher, 202n9
Brody, Howard, 77, 205n1, 217n21
Brown, Jerry, 171
Burt, Robert, 171–72, 174
Byock, Ira, 167
calling, 46–47, 204n14
categorical imperative, 43–44, 67, 206n3
Cavanaugh, Thomas, 98
cessation of eating, 165–66
Childress, James, 14, 41, 43, 199n2, 204nn8–9
clinicians. See physician(s)
closeness, intention and, 87–88
Clouser, K. Danner, 42
commitment, 17–20, 46–48, 71–72, 83–84, 89–91, 96, 138–41, 153–57,
185–89
conscience, 3–4, 89, 181, 187–89, 217n22
conscientious medicine
professional responsibility and, 189–92
in provider of services model, 181–85
and refusal of patient requests, 179–87
in Way of Medicine, 185–94
consent, 14, 44, 66, 172, 181, 195, 206n1
consequentialism, 37–38
consumerism, 2
contraception
abortion and, 208n5
abortion vs., 98–99
autonomy and, 54–55
in clinical setting, 94–99
health and, 96–98
justice and, 95
in provider of services model, 55, 94–95
refusal to fill prescriptions for, 217n21
refusal to prescribe, 184
as self-prescribed, 92–93
in Way of Medicine, 96–99
See also abortion
Darwall, Stephen, 67
death. See advance directives; end-of-life medicine
delirium, 97, 167, 169
demoralization, 2–3, 181, 195
Descartes, René, 8
doctor-patient relationship
balance in, 53–54
as community, 62
paternalism in, 52–53
solidarity in, 60–63
trust and, 64
doctors. See physician(s)
do-not-resuscitate (DNR), 58–59. See also advance directives; end-oflife
medicine; last-resort options
double effect. See rule of double effect
DPOAHC. See durable power of attorney for health care (DPOAHC)
durable power of attorney for health care (DPOAHC), 146, 148
dying, autonomy and, 68–70, 206n1. See also end-of-life medicine; last-
resort options
eating, voluntary cessation of, 165–66
ectopic pregnancy, 126, 129–31
Edelstein, Ludwig, 200n8
Emanuel, Ezekiel, 180, 182–83, 190–91, 217n16
embryology, 116–17. See also abortion
end-of-life medicine
advance directives, 58–59
assisted suicide, 69–70
authority and, 139, 150
autonomy and, 141
case study, 151–58
decision-making capacity and, 145–51
health and, 134–36, 142–43
intention and, 151–58
patient options and, 140–42
physician options and, 136–40
proportionality and, 151–58
in provider of services model, 135–36, 143–44, 147, 152
substituted judgment and, 149–50
suffering and, 142–45
in Way of Medicine, 136, 138–40, 147, 152–53, 155–56
See also last-resort options
Engelhardt, H. Tristram, 2, 9
equilibrium, reflective, 42
ethics. See Kantian ethics; medical ethics; practical ethics; practical reason
eugenics, 24
euthanasia, voluntary, 170–72. See also end-of-life medicine; last-resort
options
expertise, authority of, 73
expressive individualism, 67–68
fairness, 40–41, 81–83, 173–74, 207n1
feeding tube. See artificial nutrition and hydration (ANH)
fertility. See contraception; reproduction
Finnis, John, 73
flourishing, 6, 35–36, 71, 199n1, 203n3
Gawande, Atul, 145
gender
autonomy and, 68
transition, 104–10
Gert, Bernard, 42
gestational surrogacy, 102–3
Goldblatt, Anne Dudley, 92–93
Golden Rule, 40–41, 82–83, 118
Gomez-Lobo, Alfonso, 204n11
good(s)
abortion and, 117–18
action and, 35–36
autonomy as, 70
basic, 36, 43, 45
commitments and, 46
common, 60
consequentialism and, 37–38
destruction of, for “greater,” 39–40
in first moral principle, 38–41
internal vs. external, 15–18
practical reason and, 36, 79–80
in provider of services model, 62
rule of double effect and, 79–80
that medicine is for, 20–24
vocation and, 45–50
Hauerwas, Stanely, 9, 200n11
health
absence of suffering vs., 29
activity and, 27
in Aristotle, 20–21
consciousness and, 169
in context of organism, 27–28
contraception and, 96–98
defining, 24–31
end-of-life medicine and, 134–36, 142–43
ethics and, 5–6
as good for which medicine exists, 20–22
as holistic, 26–27
inducements and, 5
mental, 29–30
objectivity and, 25
in provider of services model, 4
risk vs., 28–29
rule of double effect and, 80
wakefulness and, 169
in Way of Medicine, 4–5
women’s, 93
Hippocrates, 213n7
Hippocratic Oath, 5, 21, 42–43, 113–14
holism, 62–63, 143
hospice, 144–45, 215n25. See also end-of-life medicine
humility, 29, 63
hydration, artificial, 160–65
individualism, expressive, 67–68
inducements, 5
informed consent, 181, 195, 206n1
integrity, 61–62
intention, 79–80, 84–88, 120–21, 128, 130, 151–58, 207n3, 208n6
intersex, 106–7
in vitro fertilization (IVF), 100, 103–4
IVF. See in vitro fertilization (IVF)
Jonsen, Albert, 42–43
judgment
in provider of services model, 3–4
substituted, 149–50
justice, 14
abortion and, 112
contraception and, 95
doctor-patient relationship and, 54–55
last-resort options and, 173–74
principlism and, 41
Kant, Immanuel, 66–67
Kantian ethics, 43–45. See also categorical imperative
Kass, Leon, 25, 27, 52, 133–34, 200n11, 202n14
Kennedy, Anthony, 67
King, Martin Luther, Jr., 196
last-resort options
abortion vs., 172–73
and artificial nutrition and hydration, 160–65
fairness and, 173–74
justice and, 173–74
physician-assisted suicide, 170–72
practical reason and, 172–73
in provider of services model, 159–60
sedation to unconsciousness, 166–69
solidarity and, 176
trust and, 174–78
voluntary cessation of eating, 165–66
in Way of Medicine, 159
law, natural, 6, 34–35, 119–20, 203n3, 207n3
Lewis, C. S., 6
life plan, rational, 46–47
living will, 146. See also end-of-life medicine
MacIntyre, Alasdair, 14–15, 19
marriage, 207n2
maximization, 37–38
Maynard, Brittany, 68, 170–71, 176–77, 206n1
McHugh, Paul, 210n13
McKenney, Gerald, 8–9, 200n11, 201n16
McMath, Jahi, 40–41
medical ethics
autonomy in, 65–66
“four principles” of, 2
health and, 5–6
See also practical reason
medicine
as calling, 46–47, 204n14
defined, 2
future of, 194–96
goods for which it exists, 20–24
health as goal of, 20–22
as practice, 4–5, 14–20
provider of services model for, 2–4
Way of Medicine, 4–6
mental health, 29–30, 202n14, 210n13
Mill, John Stuart, 66
Moore, K. L., 116
moral principle, first, 38–41
moral worth, 117–19
NaPro technology, 102
natural law, 6, 34–35, 119–20, 203n3, 207n3
Nazi Germany, 24
Nicomachean Ethics (Aristotle), 34
Night, Susan S., 217n21
nonmaleficence, 14, 41, 43, 53–56, 100, 112, 135–36, 161, 184, 190, 199n2
nutrition, artificial, 160–65
objectivity, 25–26, 202n9
opioids, 89–90, 151
pain medications, 89–90
palliative care, 143–44, 166. See also end-of-life medicine
paternalism, 52–53, 65–66, 94, 195
patients
commitment to, 18
solidarity with, 19, 60–63
vulnerability of, 21–22
See also autonomy; doctor-patient relationship
patients’ rights movement, 51–52
Pellegrino, Edmund, 21, 42, 208n6
Persaud, T. V. N., 116
personhood, 121–24
physician(s)
abortion and, 113–14
authority of, 73
as calling, 47
in end-of-life medicine, 136–40
Golden Rule and, 40
goods received by, for practice, 15–16
paternalism of, 52–53
patients’ rights movement and, 51–52
refusal of patient requests by, 179–87
satisfaction of, with work, 16
solidarity with, 60–63
suffering and, 29
trust of, 22, 64
See also doctor-patient relationship
physician-assisted suicide, 68–70, 170–72, 206n1. See also end-oflife
medicine; last-resort options
physician orders for life-sustaining treatment (POLST), 146
Planned Parenthood v. Casey, 67, 99
pluralism, 79, 192–94
POLST. See physician orders for life-sustaining treatment (POLST)
practical ethics, 34–35
practical reason
conscience and, 187
consequentialism and, 37–38
goods and, 36, 79–80
Kantian ethics and, 43–45
last-resort options and, 172–73
principlism and, 41–45
requirements of, 5–6, 33–50
vocation and, 45–50
practice
defined, 14–15
and internal vs. external goods, 15–18
medicine as, 4–5, 14–20
prayer, 63, 205n7
pregnancy. See abortion; contraception; ectopic pregnancy; reproduction
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, 53, 196
principlism, 14, 41–45, 82, 95
proceduralism, 54
professional responsibility, 180–81, 186, 188–92
proportionality, 88, 151–58, 208n6
provider of services model (PSM), 2–4
abortion in, 112, 119
advance directives in, 58
antibiotics in, 56–57
artificial nutrition and hydration in, 161
assisted reproduction in, 99–100, 102–3
authority in, 75
autonomy in, 69
conscience and, 188–89
contraception in, 55, 94–95
end-of-life medicine in, 135–36, 143–44, 147, 152
goods in, 62
health in, 4
in historical context, 8–9
last-resort options in, 159–60
paternalism and, 52–53
prayer in, 205n7
principlism in, 14
professional responsibility in, 190
and refusal of patient requests, 181–85
right-is-prior-to-the-good maxim and, 44–45
transgender in, 105–6, 109
Way of Medicine vs., 13–14
PSM. See provider of services model (PSM)
Quill, Timothy E., 77, 171, 205n1
race, hospice use and, 215n25
rational life plan, 46–47
Rawls, John, 44–45
reflective equilibrium, 42
reproduction
assisted, 99–104
topics in, 91
transgender and, 210n14
See also contraception
respect, 44, 63, 67, 117–19
responsibility, professional, 180–81, 186, 188–92
right-is-prior-to-the-good, 44–45
role-conflation harm, 98
rule of double effect
abortion and, 124–29
articulation of, 88
clinical importance of, 89–90
closeness and, 87–88
fairness and, 81–83
goods and, 79–80
health and, 80
intention and, 79–80, 84–88, 207n3, 208n6
principlism and, 82
proportionality and, 88, 208n6
side effects and, 81–88
vocation and, 83–84
Second Vatican Council, 50
sedation to unconsciousness, 166–69
self-defense, 129
shalom, 30, 203n17
side effects, 81–88
Siegler, Mark, 53, 73–74, 92–93, 205n1
solidarity, 19, 59–63, 163, 176
Stahl, Ronit, 180, 182–83, 190–91, 217n16
subspecialization, 61, 205n6
substituted judgment, 149–50
suffering
end-of-life medicine and, 142–45
health vs. absence of, 29
last-resort options and, 167–68
suicide, assisted, 68–70, 170–72, 206n1. See also end-of-life medicine; last-
resort options
Sulmasy, Daniel P., 208n6
surrogacy, gestational, 102–3
surrogate decision-making, 148–51
Tao, 6, 10
Thomasma, David, 21, 42, 217n22
Thomson, Judith Jarvis, 120–21
Torchia, Mark, 116
To Relieve the Human Condition (McKenney), 8–9
Toulmin, Stephen, 42–43
transgender, 68, 210nn13–14
transgender rights, 104–10
trust, 22, 52, 59–60, 64, 174–78
trustworthiness, 18–19
Tuskegee experiments, 24, 36, 40, 82–83
unconsciousness, sedation to, 166–69
utilitarianism, 37
vocation, 45–50, 75–76, 83–84, 141, 204n14, 207n1, 207n4
vulnerability, 21–22, 64, 125, 178
Way of Medicine, 4–6
abortion in, 113–14
advance directives in, 59
antibiotics in, 56–57
artificial nutrition and hydration in, 161–62
assisted reproduction in, 100–104
authority in, 78
autonomy in, 69
contraception in, 55, 96–99
end-of-life medicine in, 136, 138–40, 147, 152–53, 155–56
last-resort options in, 159
pluralism and, 192–94
provider of services model vs., 13–14
reason and, 5–6
refusal of patient requests in, 183, 185–87
sedation to unconsciousness in, 167–68
as tradition, 9–11
transgender in, 106–10
virtues of, 186–94
voluntary cessation of eating in, 166
well-being, 2, 37, 91, 93, 160, 180, 199n1. See also flourishing
will, living, 146. See also end-of-life medicine
women, 92. See also abortion; contraception; reproduction
women’s health, 93
Zaner, Richard, 178
FARR CURLIN is Josiah C. Trent Professor of Medical Humanities at
Duke University. He holds appointments in the School of Medicine; the
Trent Center for Bioethics, Humanities and History of Medicine; the
Divinity School; and the Kenan Institute for Ethics. Curlin has
authored more than one hundred and thirty articles and book chapters
on medicine and bioethics.
CHRISTOPHER TOLLEFSEN is the College of Arts and Sciences
Distinguished Professor of Philosophy at the University of South
Carolina. He is the author and editor of numerous books, including
Embryo: A Defense of Human Life and Lying and Christian Ethics.
The Way of Medicine
Title
Copyright
Dedication
Contents
Preface: A Perplexed Physician
Acknowledgments
Introduction: A Profession in Crisis
One The Way of Medicine
Two The Requirements of Practical Reason
Three The Doctor-Patient Relationship
Four Autonomy and Authority
Five The Rule of Double Effect
Six Sexuality and Reproduction
Seven Abortion and Unborn Human Life
Eight Medicine at the End of Life
Nine Last-Resort Options
Ten Conscientious Medicine
Notes
Index
WHAT IT MEANS TO BE
human
THE CASE FOR THE BODY IN PUBLIC BIOETHICS
O. Carter Snead
Cambridge, Massachusetts • London, England
2020
Copyright © 2020 by the President and Fellows of Harvard College
All rights reserved
Jacket design: Lisa Roberts
Jacket illustration: Leonello Calvetti/Science Photo Library
978-0-674-98772-2 (cloth)
978-0-674-25077-2 (EPUB)
978-0-674-25078-9 (MOBI)
978-0-674-25079-6 (PDF)
The Library of Congress has cataloged the printed edition as follows:
Names: Snead, O. Carter, author.
Title: What it means to be human : the case for the body in public bioethics / O. Carter Snead.
Identifiers: LCCN 2020011111
Subjects: LCSH: Human body—Law and legislation—United States. | Bioethics—United States. |
Abortion—Law and legislation—United States. | Human reproductive technology—Law and
legislation—United States. | Terminal care—Law and legislation—United States. | Human
experimentation in medicine—Law and legislation—United States. |Medical laws and legislation—
United States.
Classification: LCC KF390.5.H85 S64 2020 | DDC 174.20973—dc23
LC record available at https://lccn.loc.gov/2020011111
https://lccn.loc.gov/2020011111
for Leigh
CONTENTS
Introduction
1. A Genealogy of American Public Bioethics
2. An Anthropological Solution
3. In Cases of Abortion
4. Assisted Reproduction
5. Death and Dying
Conclusion
NOTES
ACKNOWLEDGMENTS
INDEX
Introduction
In America, law and policy are made through often messy processes of
discourse, deliberation, and democratic forms of decision-making. This
entails grappling with contested matters of deep importance, including
competing and divergent visions of how we should live and what we owe to
one another. This is certainly the case for public bioethics—the governance
of science, medicine, and biotechnology in the name of ethical goods.
In our public bioethics discourse, contending sides frequently invoke
abstract principles or rely on premises that do not reflect the full complexity
of lived reality. This, in turn, leads to the adoption of laws and policies that
fail to address the full range of human needs, often to the severe detriment
of the weakest and most vulnerable. But what if we could create an
alternative governing vision that stems from a shared foundational
understanding of human experience and identity? What if the law and
policy of American public bioethics accurately reflected our lived
experience, shared values, hopes, fears, and needs? What if there was a new
way of governing ourselves on matters touching the most intimate and
defining issues facing humankind? This book aims to offer such a new path
forward for public bioethics, rooted in what it means to be and flourish as a
human being, in light of what and who we really are.
Public bioethics is fundamentally concerned with human vulnerability,
dependence, frailty, and finitude. It is about procreation, pregnancy, babies,
wasting illness, devastating injury, desperate enrollees in clinical trials,
fearful patients, the disabled, the elderly, the dying, and the dead. Public
bioethics is uniquely complex and complicated, dealing with novel and
powerful scientific techniques, clinical practices, and biotechnologies
applied in service of “health” and “wholeness”—concepts that are both
elusive and disputed. Public bioethics is a realm of strong and often bitter
disagreement, touching as it does on intimate and essential matters such as
the meaning of parenthood, obligations to children and our elders, the
claims of the sick and disabled, our freedom, our flourishing, our very
conception of self, as well as the boundaries of the moral and legal
community. It involves literal life and death issues such as the core “vital
conflicts” over the law governing abortion, assisted reproductive
technology, and end of life care. And there are set dichotomies of
conservative versus liberal and secular versus religious that bring us even
further from agreement or a shared understanding. How, then, should we
seek to govern ourselves in this complex, contested, and vital domain?
To govern ourselves wisely and humanely, we must start at the
beginning, namely, the normative foundation for law and policy in this area.
We must begin with what it means to be human.
This book will argue that the current law concerning the core “vital
conflicts” of American public bioethics is grounded in a gravely incomplete
and thus false vision of human identity and flourishing. It is a vision that
defines the human being fundamentally as an atomized and solitary will. It
equates human flourishing solely with the capacity to formulate and pursue
future plans of one’s own invention. By contrast, the law in this domain
views the natural world and even the human body itself as merely inchoate
matter to be harnessed and remade in service of such projects of the will.
But human beings do not live as mere atomized wills and there is more
to life than self-invention and the unencumbered pursuit of a destiny of our
own devising. The truth is that persons are embodied beings, with all the
natural limits and great gifts this entails. We experience our world,
ourselves, and one another as living (and dying) bodies. Because we are
bodies, vulnerability, mutual dependence, and natural limits are inextricable
features of our lived human reality. And, for reasons that will be explored
below, our embodiment situates us in a particular relationship to one
another, from which emerge obligations to come to the aid of vulnerable
others, including especially the disabled, the elderly, and children. But
because the law governing several of the core vital conflicts of American
public bioethics rests on a vision of human identity and flourishing that
does not consider embodiment as essential to its account of the person, it
fails to recognize these obligations, and leaves the weakest and most
vulnerable members of the human community invisible and unprotected.
As is true for all areas of law and policy, if public bioethics is to
effectively protect and promote the flourishing of human beings, it must be
rooted in a conception of human identity that corresponds to embodied,
lived reality. Public bioethics must therefore be grounded in the whole truth
of who we are and how we stand in relation to one another as vulnerable,
mutually dependent, finite, and embodied beings.
Accordingly, this book will reframe and resituate three principal
contemporary issues of public bioethics within what will be termed an
“anthropological” paradigm. Law and public policy are irreducibly
normative, aiming at goods to be pursued and promoted, as well as harms to
be avoided or remediated. Despite efforts to avoid appeals to
“comprehensive” visions of the good in policy debates and lawmaking, all
legislative, regulatory, and judicial authorities, along with the public and
academic discourse that ground and sustain them, unavoidably rely on
contested but mostly undeclared visions of what it means to be and thrive as
a human being. This is, a fortiori, true of public bioethics. For this reason,
the first task at hand is to subject the core disputes of American public
bioethics to a searching, inductive anthropological analysis that will
uncover, illuminate, and critique the conception of human identity and
flourishing that underwrites current law and policy.
To understand why a new framework is needed and how it might be
integrated into law and policy, we must first explore the history and
practicalities of American public bioethics. Accordingly, Chapter 1 traces
the historical trajectory of public bioethics in the United States with special
attention to three signal events at its inception that illustrate the legal,
ethical, and political paradigm that persists to the present day. Chapter 2
reflects on the problem (and solution) of anthropology—offering an account
of the book’s primary mode of inquiry, and an exploration and critique of
“expressive individualism,” the vision of human identity and flourishing
that animates key conflicts of American public bioethics. Following that is
a more in-depth exploration of these perennial vital conflicts of American
public bioethics at the beginning and end of human life, including the
disputes over: the law of abortion (Chapter 3); the regulation of assisted
reproduction (Chapter 4); and issues concerning the law of end-of-life
decision-making, with a special focus on the refusal or termination of life-
sustaining measures, and physician-assisted suicide (Chapter 5).
These critiques will show that American law and policy in these
domains rest on an image of the human being that does not reflect the lived
experience of embodied human reality in all its complexity. Instead, it relies
on a partial and incomplete vision of human identity that closely tracks
what both sociologist Robert Bellah and philosopher Charles Taylor have
identified as “expressive individualism,” in which persons are conceived
merely as atomized individual wills whose highest flourishing consists in
interrogating the interior depths of the self in order to express and freely
follow the original truths discovered therein toward one’s self-invented
destiny.1 Expressive individualism, understood in this sense, equates being
fully human with finding the unique truth within ourselves and freely
constructing our individual lives to reflect it.
As it emerges in American public bioethics, this anthropological frame
decisively privileges cognition and will in defining personal identity,
supplies the content for normative (and legal) concepts such as “health” and
“human dignity,” and dictates the very boundaries of the moral and legal
community. It dualistically distinguishes will and cognition from the body
and treats the body itself as primarily a tool for pursuing one’s own freely
chosen goals. It understands human relationships as transactional, formed
by agreements, promises, and consent for the mutual benefit of the parties
involved.
People thus encounter one another as collaborative or contending wills,
pursuing their own individual goals. Claims of unchosen obligations and
unearned privileges are unintelligible within this framework. In this
paradigm, the goods of autonomy and self-determination enjoy pride of
place among ethical and legal principles. Law and government exist chiefly
to create the conditions of freedom to pursue one’s invented future,
unmolested by others and perhaps even unimpeded by natural limits.
It is a vision that rejects the teleological conception that “natural
givens” are a useful guide to interpreting the world of physical reality and
embraces a more modern and instrumental vision of humankind’s
relationship to the natural world, and indeed, to the human body itself.
Because this regnant anthropology of American public bioethics is, to
borrow the words of Alasdair MacIntyre, “forgetful of the body,” it is
inadequate as a foundation for laws and policies responsive to the lived
realities of vulnerability, mutual dependence, and finitude that comprise the
human context of this domain.2 It is true, of course, that human beings exist
as individuated, free, and particular selves. And there can be great value in
the exploration of the vast interior of the self to discover and express the
authentic and original meaning found there that serves as a guide to one’s
future plans, and even as a transgressive witness against wrongheaded and
repressive customs.
But this is only a partial and incomplete picture of the fullness of lived
human reality. The anthropology of expressive individualism alone cannot
make sense of our fragility, neediness, and natural limits. Worse still, it
cannot offer a coherent, internally consistent account of our obligations to
vulnerable others, including children, the disabled, and the elderly.
What is needed, and what this book offers, is an anthropological
corrective, an augmentation to the foundations of American public
bioethics. To govern ourselves wisely, justly, and humanely, we must begin
by remembering the body and its meaning for the creation and
implementation of law and policy.
To that end, this book articulates and defends a more capacious account
of human identity that embraces not only the truth and reality of human
freedom and particularity, but also the vulnerability, mutual dependence,
and finitude that result from our individual and shared lives as embodied
beings. Building upon this richer anthropological account, the book argues
—following Alasdair MacIntyre—that for both their basic survival and their
flourishing, embodied (vulnerable) human beings depend on networks of
“uncalculated giving and graceful receiving” constituted by other people
who are willing to make the good of others’ their own, regardless of what
this might offer by way of recompense.3 By first depending on these
networks, and then participating in them, individuals become the sort of
people who can care for others in this same way. This transformation of
persons from needy consumers of unconditional care and support to mature
uncalculating caregivers for others, of course, guarantees the sustainability
of these essential networks. But, more importantly, it also helps people to
develop into what an embodied being should become, namely, the kind of
people who make the good of others their own. Put most simply and
directly, by virtue of their embodiment, human beings are made for love
and friendship.
The cultivation of memory and the moral imagination are a crucial
means of understanding ourselves more fully and seeing “the other” to
whom we owe obligations of care and protection. If we remember that we
are embodied, we will better understand ourselves as whole, living
organisms rather than mere wills inhabiting instrumental bodies (“re-
membering” as re-integration of body and mind). If we remember that our
embodiment renders us vulnerable and dependent upon the beneficence of
others for our very lives and self-understanding, we will more clearly grasp
our obligations of just generosity and reciprocal indebtedness to those
others who are likewise vulnerable (“re-membering” as re-binding
ourselves to one another in the body of the community). If we remember
that as living human bodies, we all pass through stages of life when our
will, judgment, strength, and beauty are inchoate, obscured, compromised,
or annihilated, we will be able to more readily recognize others as fellow
members of the human community with claims on us, despite the
sometimes distressing disguises of age, illness, and disability
(“remembering” as an essential tool of recognition).
The pathway to a richer, more human public bioethics requires not only
acknowledging the limits and necessities of embodiment but embracing the
great gifts and opportunities that only embodied human life affords. Thus,
this book proposes a new array of goods, practices, and principles suitable
for governing a polity of relational, needful, finite, and embodied persons.
Drawing upon MacIntyre’s “virtues of acknowledged dependence,” these
include the practices of just generosity, hospitality, misericordia
(accompaniment of others in their suffering), gratitude, humility, Michael
Sandel’s (and William May’s) “openness to the unbidden,” tolerance of
imperfection, solidarity, dignity, and honesty.4 In other words, the practices
of authentic friendship.
After applying this analysis and argument to the current law of
abortion, assisted reproduction, and end-of-life decision-making, the book
concludes by arguing that the proposed anthropological vision rooted in
human embodiment is truer, better, and more beautiful than the alternative
that currently grounds these vital conflicts of American public bioethics.
Unlike the regnant paradigm that undergirds the law, this conception of
human identity and flourishing makes sense of our embodiment,
vulnerability, and complex relationships to vulnerable others, including
especially children, the disabled, and the elderly. It also enables a more
coherent account of both equality and human freedom.
This discussion serves as a first point of entry into the thorny questions
and complexities of how a pluralistic nation can and should integrate
normative concepts regarding the nature of human identity and flourishing
into law and policy. And it will offer general principles and policy goals
that follow from the proposed augmentation of the anthropological
foundations of public bioethics.
Some of these ideas may prove surprising and challenging both for
those who identify themselves as liberal or progressive, as well as for those
who describe themselves as conservative and libertarian. Taking seriously
the meaning of embodiment for public bioethics leads to conclusions that
do not fit easily—or perhaps at all—into current American political
categories. But the hard work of translating the general principles and
prescriptions of a more human public bioethics into concrete, operational
laws and policies must wait for the next phase of inquiry.
Lastly, before proceeding, it is worthwhile to recall that even though it
draws upon works of philosophy, political theory, science, and even
literature, this is, finally, a book about the law. The discussion concerns the
anthropological premises and assumptions on which the law relies as
revealed through an inductive analysis of its doctrine and application. There
are no claims made about the motivations, commitments, or premises of
individual people in their decision-making. Of course, the law shapes and
reflects the goods people hold dear and the harms they seek to avoid, and so
the analysis that follows is relevant to personal decision-making. But the
anthropological premises of the law and that of the individual person are
not necessarily the same. The inquiry and argument of this book is focused
on the former.
Finally, this book is a proposal of an alternative governing vision that
resonates more truly with our lived experience, shared values, hopes, fears,
and needs. Accordingly, the criteria for evaluating the proposal should be
tailored to the standards of the public square, where the aim is political
persuasion rather than apodictic philosophical proof. There are no
demonstrable first principles offered here—only axioms, postulates, and
propositions, to be judged by reason and experience. But this is the way of
law, politics, and public policy. In the end, this book is a proposal offered in
the spirit of friendship, anchored in the firm belief that we can only govern
ourselves wisely, humanly, and justly if we become the kind of people who
can make each other’s goods our own.
1
A Genealogy of American Public Bioethics
The core argument of this book is that the normative grounding of
American public bioethics is a vision of human identity and flourishing that
does not fully reflect the lived reality in which the relevant legal and
political issues arise. American law and policy concerning bioethical
matters are currently animated by a vision of the person as atomized,
solitary, and defined essentially by his capacity to formulate and pursue
future plans of his own invention. The “natural” world and even the human
body are, by contrast, understood as merely inchoate matter to be harnessed
and remade in service of such projects of the will. This incomplete and thus
false picture of life as humanly lived makes a very poor foundation for the
law and policy of bioethics. The truth is that persons live (and die) as
embodied beings, with all the natural limits and great gifts this entails.
Thus, the real human context in which the issues of public bioethics emerge
is characterized by vulnerability, mutual dependence, and finitude. The
asymmetry between the law’s current anthropological premises and the
lived reality that it seeks to govern renders American public bioethics
incapable of responding wisely, justly, and humanely to many of the pitched
vital conflicts that define this domain. Indeed, because of its inadequate
vision of human identity and flourishing, the relevant law and policy cannot
offer a coherent account of our own vulnerability, dependence, and
relationships to vulnerable others, including especially children, the
disabled, and the elderly. What is needed, therefore, is an “anthropological”
corrective to resolve this asymmetry, and to integrate into public bioethics
fitting goods, practices, and virtues suitable to governing a polity of
embodied human beings.
To understand why such a corrective is needed and how it might be
integrated into law and policy, it is necessary first to explore in some depth
the unique field under consideration, namely, American public bioethics.
Accordingly, this chapter will set forth a brief thematic historical narrative
meant to illuminate the procedural, substantive, and human paradigm of
American public bioethics, established at its inception and continuing to the
present day. This genealogy will lay a general framework for the more
granular inductive anthropological analysis and critique of American public
bioethics in the chapters that follow.
WHAT IS PUBLIC BIOETHICS? HISTORY AND HUMAN CONTEXT
The story of American public bioethics is a succession of political and legal
reactions to the reported use, abuse, and exploitation of the weakest and
most vulnerable members of the human population. It is a history of mutual
dependence, neediness, and finitude. It is a story that begins with the
practice of human subjects research.
Why did the practice of human subjects research precipitate the crises
from which American public bioethics emerged in response? The answer
lies in its very definition and purpose, which reveal that despite its
importance for the pursuit of health and wholeness, it is a species of activity
fraught with potentially profound ethical and personal risks to all involved.
Human subjects “research” is a term defined in federal law as
“systematic investigation … designed to develop or contribute to
generalizable knowledge.”1 It is essential for understanding human
biological functioning and the mechanisms of action of drugs, devices, and
medical interventions that may (or may not) offer safe and efficacious
means of preventing or treating diseases and injuries. When directed toward
common lethal diseases, such research can save lives. In the face of
existential public health threats, human subjects research may save
communities or even entire nations. Unsurprisingly, biomedical research
thus enjoys widespread public support, and its most prominent practitioners
are sometimes rightly hailed as genuine heroes for the common good.
However, the primary goal of this research is not for researchers to care
for and cure those who serve as subjects. Instead, researchers use human
subjects as tools to evaluate untested interventions or to understand the
natural progress of disease without treatment. Often the human subjects
involved are profoundly vulnerable—gravely ill and suffering. While both
researcher and subject surely hope that the latter will receive a benefit
through his participation, this is not the fundamental aim of the endeavor.
The goal is to obtain information about the safety and efficacy of possible
medical treatments. The human subjects involved are, by design, means and
instruments to the development of this knowledge.
Accordingly, the aims and metrics for success are not the same for
clinicians and researchers. Clinicians are single-mindedly focused on
restoring their patients to health and wholeness. The interests and goals of
doctor and patient are thus perfectly aligned, even in the application of
experimental therapy. The success of clinical care is measured by healing
or, failing that, diminished suffering. By contrast, the researcher seeks
generalizable knowledge through the rigorous and systematic application of
the scientific method. For the researcher, an experiment definitively
showing that an untested medical intervention is ineffective or even
dangerous is successful in that it produces useful generalizable knowledge.
The challenge for human subjects researchers is to find a way to
conduct this research while remaining faithful to foundational principles of
ethics, justice, and human rights that bind us all. They traditionally do so by
securing informed consent. Providing such consent allows subjects to freely
participate in the research enterprise, knowing and appreciating the risks to
life, limb, and the expectations involved. Thus, by the exercise of their own
autonomy and self-determination, the human subjects themselves transform
the nature of the transaction from objectification to collaboration.
But does this protect human subjects from exploitation and abuse?
What about those who are incapable of informed consent because of
cognitive impairments resulting from immaturity, disability, low
intelligence, or lack of sophistication? What about those subjects whose
capacity to consent is impaired by circumstances such as incarceration,
serving as soldiers bound to strict rules of obedience and chain of
command, or belonging to a community beset by systemic racial injustice?
What about those who are so desperate for a cure that their perceptions and
understanding are compromised? These are serious questions that emerge in
dramatic fashion in the historical narrative of American public bioethics.
Therefore, in its essence, research involving human subjects presents
an ethically fraught and volatile human context, rife with potential peril for
all involved. Even under the best possible circumstances, research involving
human subjects involves management and distribution of serious risks, and
the engagement with potentially profound conflicts involving justice,
human dignity, freedom, and the common good. At its worst, research
involving human subjects can be the occasion for the darkest forms of
exploitation, abuse, and deep violence. It is from this crucible that
American public bioethics emerged.
Scholars and commentators mark the beginning of American public
bioethics in different ways, but there are three signal moments that
particularly illustrate how crucial human embodiment is for wise and just
governance in this domain. Moreover, these events set in motion a cascade
of political and legal responses that laid the foundation for a framework that
endures today. The first was the publication by the New England Journal of
Medicine of Henry K. Beecher’s “Ethics and Clinical Research,” a 1966
article detailing twenty-two examples of unethical experiments involving
human subjects.2 The second was the publication on July 25, 1972, of the
details of the infamous federal “Tuskegee Study of Untreated Syphilis in
the Negro Male” in the Washington Evening Star.3 Third, on April 10, 1973,
an article by Victor Cohn published on the front page of the Washington
Post reported for the first time on debates at the National Institutes of
Health on whether to fund research involving “newly delivered human
fetuses—products of abortions—for medical research before they die.”4
Each of these three episodes began with a public scandal involving the
abuse of vulnerable individuals treated as objects by researchers or
clinicians, followed by a governmental response. This response included
information gathering and debate with discussion of the moral and legal
boundaries of the community, as well as the tensions between scientific
progress and respect for the dignity, autonomy, and bodily integrity of
marginalized and exploited individuals. The governmental response finally
culminated in official action such as passage of a statute, administrative
regulations, judicial decision, or issuance of an advisory report. Solutions
looked primarily to the ethical goods of autonomy and self-determination as
the key safeguards against future abuses.
BEECHER SOUNDS THE ALARM
Henry Knowles Beecher was an eminent practitioner and professor of
anesthesiology at Harvard University, and also an active clinical research
scientist. He had a profound interest in the shocking research abuses
perpetrated by the Nazi “doctors” against more than seven thousand
documented concentration camp captives, including Jews, Gypsies, Soviet
prisoners, Poles, Catholic priests, political prisoners, and homosexuals. He
carefully studied classified U.S. military documents detailing these
atrocities, along with the proceedings of the Nuremberg “Doctor’s Trial”
itself (1946–47), which culminated in the conviction of sixteen defendants,
including seven who were put to death.
During the Nuremberg Doctor’s Trial, the defendants raised the
argument that the United States was not itself a paragon of research ethics
and had its own sordid past. Indeed, on cross-examination a key witness for
the prosecution admitted that until the trial there were no human subjects
protections codified in the United States. In fact, the first such code,
“Principles of Ethics Concerning Human Beings,” was adopted by the
American Medical Association in 1946 precisely in response to the
Doctor’s Trial.
From his study of these documents Beecher was moved to explore the
lack of protections for human subjects of research in the United States as
well as the past exploitation of vulnerable populations in America. On
March 22, 1965, he delivered a lecture at the Brook Lodge Symposium for
Science Writers in Kalamazoo, Michigan (sponsored by the Upjohn
Company), detailing more than a dozen experiments conducted that
presented no therapeutic benefits to the human subjects involved and for
which no consent had been provided. His speech provoked a spirited
response both from the medical research community and the lay public.5
For the next year he continued to write and speak about the issue, as he
worked to compile a carefully documented and illustrative study meant to
demonstrate the scope and gravity of the problem.
On June 16, 1966, the New England Journal of Medicine published the
fruits of Beecher’s painstaking labors in an article with the unremarkable
title “Ethics and Clinical Research.” In the article, Beecher argued that
“unethical or questionably ethical procedures are not uncommon,” and
documented twenty-two published research papers in which human subjects
received no therapeutic benefits.6 In all but two examples, there was no
mention whatsoever of consent. Many of the human subjects were
incapable of meaningful consent due to cognitive incapacity or extenuating
circumstances. Indeed, many of the individuals affected had no idea that
they were enrolled in a biomedical research project at all. The human
subjects involved were profoundly vulnerable. These included soldiers,
indigent patients of a charity hospital, institutionalized children with severe
intellectual disabilities, the elderly, the terminally ill, and chronic alcoholics
suffering from liver disease.
The cases Beecher cited included protocols in which researchers
withheld known effective treatments, resulting in direct and grave harm to
the participants.7 For example, in one study of rheumatic fever,
investigators intentionally withheld penicillin from one hundred and nine
military servicemen with streptococcal infections. They were never
informed that they were part of an experiment. Two of these servicemen
developed acute rheumatic fever and one developed acute nephritis.8 In
another study of relapse rates of Typhoid Fever, efficacious treatment was
withheld from a group of charity hospital patients, twenty-three of whom
died “who would not have been expected to succumb if they had received
specific therapy.”9
Other cases involved the intentional exposure of subjects to infectious
diseases or other dangerous agents. The two most notorious examples
involved the “artificial induction of hepatitis … carried out in an institution
for mentally defective children” (later revealed to be Willowbrook State
School in Staten Island), and the deliberate injection of live cancer cells into
elderly patients of New York’s Jewish Chronic Disease Hospital.10 In the
first case, the parents of the cognitively disabled children acceded to the
administration of the virus, but “nothing is said of what was told them
concerning the appreciable hazards involved.”11 In the second case, the
hospitalized patients were “merely told they would be receiving ‘some
cells’ ” but “the word cancer was entirely omitted.”12
Beecher did not provide any identifying information for the researchers
or institutions involved, but the twenty-two examples cited were drawn
“from leading medical schools, university hospitals, private hospitals,
governmental military departments (the Army, the Navy, and the Air
Force), governmental institutes (the National Institutes of Health), Veterans
Administration hospitals and industry.”13 The institutions hosting the
research included such luminaries as Harvard University and the NIH
Clinical Center. These ethically suspect research projects had passed peer
review and were published in elite journals including both the New England
Journal of Medicine and the Journal of the American Medical Association.
Beecher detailed the powerful institutional and personal pressures that
induce researchers to aggressively pursue their work with human subjects,
including new sources of financial support, requirements for academic
tenure and promotion, hunger for prestige, as well as a genuine passion to
pursue knowledge for the sake of itself or to relieve human suffering.
Even though Beecher’s assessment included the assurance that
“American medicine is sound, and most progress in it soundly attained,”
and his proposed solutions were modest (he thought that calling public
attention to these ethical lapses would be a sufficient corrective), the article
shocked the medical research community and the public.14 The front pages
of major national newspapers covered the scandals and Congress directed
the National Institutes of Health to investigate. And, as will be discussed
below, Beecher’s article (and his testimony) played an essential role in the
Congressional hearings that culminated in the federal statute that led to
American public bioethics.
INJUSTICE IN TUSKEGEE
On July 25, 1972, an article appeared on the front page of the Washington
Evening Star entitled “Human Guinea Pigs: Syphilis Patients Died
Untreated,” by Associated Press reporter Jean Heller.15 The next day, this
shameful story of exploitation, deception, and neglect of hundreds of poor
black men and their families by U.S. Public Health Service researchers
dominated the headlines throughout the country. The details were shocking.
In 1932, researchers from the federal government commenced the “Public
Health Service Study of Untreated Syphilis in the Male Negro in Macon
County, Alabama.” It was to be a “natural history” study of the progression
of the devastating and deadly disease without any significant medical
intervention. The disease was rampant in Macon County, a community of
poor, mostly uneducated black sharecroppers. Indeed, Macon had the
highest syphilis rate in the nation. The researchers lured their subjects—600
men in all—with vague and deceptive advertisements promising testing and
treatment for “bad blood” for “colored people.” Of the 600 men enrolled,
301 had evidence of latent syphilis and 299 served as a control group.
Original records and protocols of the study are scant, but it is clear that the
initial plan was to study the men for six months. Later, however, the
decision was taken to follow the men until they died and perform
investigative autopsies. Ultimately, the study lasted forty years.16
Investigators never made any mention of syphilis to the participants,
nor did they disclose the then-known consequences of failing to treat the
disease. They also failed to inform participants of the known risks of
transmission of infection to sexual partners or children. There was, in fact,
no evidence whatsoever of any attempts to secure meaningful consent of
any sort. The participants were merely told that they were being tested for
“bad blood.” They were subject to invasive testing, including spinal taps.
As an inducement to participate in the study, men were offered rides to the
doctor, free lunches, and stipends to offset the costs of burial following the
investigative autopsy.17
Not only did the investigators deceive the participants and withhold
crucial information about the study and its risks, they actively took steps to
prevent the patients from obtaining needed care. The men were deprived of
effective management of their symptoms, and it has been reported that the
investigators even successfully persuaded local medical care providers
(along with their partners at the Tuskegee Institute) not to diagnose or treat
them so that the natural history of the disease could be observed without
disruption. Most shocking of all, even though penicillin was developed as a
highly effective intervention for syphilis in the 1940s and became widely
available shortly thereafter, the investigators deliberately withheld such
treatment.18
The human toll on these poor men and their families was staggering.
Many had their lives cut short by the disease. Those who survived suffered
its ravages, including severe pain, skin lesions, neurological dysfunction,
bone and joint defects, cardiovascular disease, paralysis, and dementia. Still
others unwittingly passed the disease to their spouses and children.
In 1966, a low-level U.S. Public Health Service venereal disease
researcher, Peter Buxton, learned of the study and reported his alarm to
colleagues, who almost entirely ignored him. When his superiors took no
action, he brought the story to a journalist friend who referred him to AP
reporter Jean Heller who published her findings, described in detail above,
in July 1972. A civil rights class action lawsuit was filed on behalf of
survivors against the government and was later settled for ten million
dollars.19
Alongside the ethical breaches reported by Beecher, the scandalous
injustices of Tuskegee comprise the second major precipitating event from
which American public bioethics emerged. But before turning to the
governmental responses engendered by these events, it is necessary to
consider one final scandal that further catalyzed the development of this
distinctive field of law and policy.
RESEARCH ON JUST-ABORTED, EX UTERO, BUT STILL-LIVING INFANTS
Between April 10 and April 15, 1973, the Washington Post ran three
separate front-page articles detailing a previously unreported debate at the
National Institutes of Health regarding a proposal to fund research
involving the use of “newly-delivered human fetuses—products of abortion
—before they die.”20 The first article (April 10) related that thirteen months
earlier NIH had received an internal recommendation to proceed with such
research, though it had more recently chosen to “consider the ethics of the
matter afresh” in light of the scandal of the Tuskegee syphilis study. Two
years prior, another NIH advisory committee proposed the use of such
newly-delivered aborted children provided they were of a certain age (no
more than twenty weeks), weight (no more than 1.1 pounds), and length (no
more than 9.8 inches, crown to heel). There were reports from Great Britain
and elsewhere that researchers had been “obtaining months-old fetuses for
research and keeping them alive for up to three or four days” ex utero. One
American researcher asserted that U.S. scientists were conducting similar
experiments abroad with NIH funding. This was disputed by other NIH
officials. One federal official, the scientific director for the Child Health
Institute, noted that federal support for such research is controversial
because of “an articulate Catholic minority who disagrees” and “a
substantial and articulate black minority” who oppose abortion.21
This comment proved prescient, as detailed in the second Washington
Post article published three days later (April 13), when more than 200
Catholic high school students gathered in the NIH auditorium to protest and
put pointed questions to federal officials. The protest was organized by a
group from Stone Ridge Country Day School of the Sacred Heart, led by
three students, including 17-year-old Maria Shriver, the daughter of Eunice
and Sargent Shriver, and the niece of Senator Edward Kennedy, and his
deceased brothers, the late Senator Robert and President John F. Kennedy.
(She would, of course, go on to have a distinguished career as a journalist
and serve as First Lady of California.) In response to the students, Dr.
Robert Berliner, NIH Deputy Director for Science, asserted in a written
statement that the agency “does not now support” such research and that
there are “no circumstances at present or in the foreseeable future that
would justify NIH support.”22
Two days later (on April 15), the Washington Post published yet
another article, this time describing the work of two American scientists
who had on separate occasions traveled to Finland to conduct experiments
on newly aborted, ex utero but still-living infants. One scientist, Dr. Jerald
Gaull, stated that he would remove the brain, lungs, liver, and kidneys while
the child’s heart was still beating. The other doctor (chief of Pediatrics at
Cleveland Metropolitan General Hospital) would take a blood sample while
the child was still connected to her mother by the umbilical cord. After the
cord was severed, but before cessation of the heartbeat, he would surgically
remove various organs. These scientists justified their practices first by
appealing to the useful knowledge such experiments might yield in service
of maternal-fetal health, and second, because the just-aborted infants were
too biologically immature (given their under-developed lungs) to survive
outside of the womb for an extended period of time.23
Such scientists would travel abroad to countries where abortions were
performed later in pregnancy by caesarean section, affording ready access
to newly-removed and still-living neonates. Dr. Gaull indicated that he had
traveled to Finland for a period of a month, during which time he could
perform five or six procedures per day. He stated that he and colleagues had
“even studied the whole intact fetus, injecting radioisotopes and following
certain chemical reactions. We have in Europe studied the transfer of amino
acids from mother to fetus while the umbilical cord was still intact.”
Another scientist, Dr. Abraham Rudolph, injected “radioactively labeled
microspheres” into an intact living post-abortion infant still attached to her
mother by the umbilical cord in order to study blood circulation in the fetus.
Another scientist interviewed suggested that dozens of researchers
conducted similar experiments. A 1971 NIH nonfederal study section
recommended that researchers be allowed to artificially maintain the life of
post-abortion neonates for at least three or four hours. This proposal does
not appear to have been accepted as formal NIH policy, though NIH-funded
researchers seem to have engaged in research on still-living aborted
neonates abroad.24
Published articles in scholarly journals likewise confirmed the use and
destruction of living newly aborted babies in research, including
experiments that intentionally extended their lives ex utero solely for the
sake of the investigation. One such experiment was reported in the
American Journal of Obstetrics and Gynecology, and involved efforts to
develop an artificial placenta.25 Another paper published in the Transactions
of the American Pediatric Society described the decapitation of living
newly aborted ex utero infants (at 12–20 weeks gestation) followed by
perfusion of their brains with chemical markers in order to study fetal brain
metabolism.26
Much of the lay public was shocked by the reports of these
experiments, and NIH leaders quickly sought to reassure them that these
were not sponsored projects that enjoyed the support of federal taxpayer
dollars. But as will be detailed below, this was not the end of the story, but
rather only the beginning.
These three public scandals—the ethical abuses reported by Beecher,
the Tuskegee scandal, and controversial experiments on aborted but still-
living ex utero nonviable infants—formed a troika of events that spurred a
governmental response that would lay both the procedural and substantive
groundwork for American public bioethics for years to come.
THE KENNEDY HEARINGS
It began in February of 1973. The U.S. Senate Subcommittee on Health of
the Committee on Labor and Public Welfare, led by Senator Edward
Kennedy, convened a series of hearings in response to practices and
developments in biomedical science and medicine that he believed raised
profound ethical, legal, political, and social challenges. The hearings lasted
eleven days in all, including ten meetings of the subcommittee from
February through July of 1973, and one in July 1974 (one week after the
passage of a significant federal statute—the direct fruit of the previous
year’s hearings).
But these were not the first Congressional hearings on bioethical
issues. Years before, in 1968, Senator Walter Mondale initiated seven days
of hearings aimed at passing a joint resolution creating a federal
“Commission on Health Science and Society” to provide oversight and
guidance on bioethical questions of public import. Mondale was reacting to
reports of the first human heart transplant by Dr. Christiaan Barnard of
South Africa as well as various questions concerning genetic manipulation
that prefigured the current debates over human cloning and gene editing.
But it is also clear that he had in mind the 1966 article of Henry Knowles
Beecher, who provided testimony at the hearing recapitulating his
arguments about the professional and financial pressures motivating
increasingly aggressive forms of human subjects research. But Mondale’s
initiatives foundered until Senator Kennedy commenced his own efforts in
1973.
The Kennedy hearings were formally framed around three legislative
proposals under consideration: Senate Bills 878 and 974, and Joint
Resolution 71. S.B. 878 and S.B. 974, aimed, respectively, to provide
oversight of federally sponsored research involving human subjects and to
provide training in the ethical, legal, social, and policy dimensions of
biomedical research. The third proposal, Senate Joint Resolution 71, was
for the creation of a national bioethics advisory commission in the same
spirit as the 1968 Mondale proposal.
Individual hearings were divided by topic. The first hearings focused
on ethical risks and abuses involving pharmaceutical research using
vulnerable populations, including the controversial “off-label” use of
DepoProvera and DES as experimental contraceptives. A second set of
hearings explored the ethical challenges of research involving the
neurosurgical or pharmacological manipulation of brain and behavior, as
well as research involving genetic screening and engineering. A third set of
hearings focused on research done on vulnerable subjects, including
prisoners, and a discussion of what was termed “outrageous research
abuses.” This included the experimental use of a dangerous midterm
abortion procedure in May of 1972 by Dr. Kermit Gosnell, which led to
serious complications for sixty percent of a group of poor minority women
bused from Chicago to Philadelphia to receive the procedure.27 The fourth
round of hearings focused entirely on the Tuskegee syphilis study scandal.
A fifth hearing, held a year later, was dedicated to examining the
controversial use of living just-aborted ex utero newborns in research.
Despite the wide-ranging subject matter of the first four rounds of
Kennedy hearings in 1973, three recurring elements ran throughout the
discussion: namely, the work of Henry Knowles Beecher, the abuses of
Tuskegee, and to a lesser extent, research involving unborn children during
and after abortion. This last issue resurfaced prominently in the final
Kennedy bioethics hearing dedicated entirely to exploring this controversial
matter.
Beecher was everywhere. His research (especially his 1966 article) was
invoked in nearly every hearing. He testified directly in the third set of
hearings on research abuses of vulnerable human subjects. Symbolically
and substantively, he served as a living prophetic witness warning against
the powerful temptation to use and exploit the vulnerable in biomedical
research to gain prestige, professional advancement, the promise of
funding, as well as the noble pursuit of useful knowledge.
The Tuskegee scandal was a ubiquitous element of the hearings,
anchoring its inception and sustaining its investigative work. In written
testimony submitted for the first hearing, Senator Hubert Humphrey
directly invoked the abuses of Tuskegee and quoted Beecher’s observation
that “[l]ay subjects, sick or well, are not likely to understand the full
implications of complicated procedures, even after careful explanation.”28
In the third round of hearings relating to vulnerable human subjects and
“outrageous” research abuses, numerous witnesses cited Tuskegee as a
constant refrain. Members of the Tuskegee Syphilis Study Ad Hoc
Advisory Committee (created by the Assistant Secretary of Health,
Education, and Welfare) testified about their investigation of the incident.
Fred Gray, a prominent civil rights attorney who had represented Rosa
Parks, testified about his work on behalf of victims of the Tuskegee
experiments, followed by the testimony of two Tuskegee survivors, Lester
Scott and Charles Pollard. A fourth round of hearings lasting four days was
dedicated entirely to investigating the Tuskegee scandal and hearing from
those involved. Throughout all the hearings, the Tuskegee incident served
as a stark and constant reminder that all American institutions—even the
federal government itself—are capable of unspeakable abuse and profound
injustice in the name of biomedical progress.29
Research involving aborted though still-living newborns was also a
feature of the 1973 hearings. In the second round of hearings (held on
February 23 and March 6), nearly sixty pages of written testimony and
supporting materials were submitted describing examples of and raising
grave concerns about such research. Though less prominent during the
Kennedy hearings of 1973, the issue and the public controversy that it
occasioned proved central to the legislative action following those hearings
and prompted a hearing entirely dedicated to live fetal research, held in
1974.
THE BIRTH OF AMERICAN PUBLIC BIOETHICS
While the 1973 Kennedy hearings themselves marked an essential moment
in the inception of public bioethics as a field of law, policy, and politics in
America, the legislative action in which the hearings culminated was even
more momentous. In effect, it constituted the first legal mandate for the
government to identify and implement bioethical principles and regulations
in the name of the state.
The National Research Act was signed into law by Richard Nixon on
July 12, 1974. In part it aimed to facilitate and promote excellence in
biomedical research through federal training and funding programs. But
more significantly, it was the concrete statutory response to the scandals
and concerns that surfaced and were examined during the Kennedy
hearings. Title II of the Act created the National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research. It
was to be an eleven-member advisory council composed of experts drawn
from a variety of disciplines including medicine, law, ethics, theology,
philosophy, health management, government affairs, and the sciences. It
provided that five members (though no more than five of the eleven) should
be actively involved in research with human subjects.30
The National Commission was empowered by the new law “to identify
the basic ethical principles which should underlie the conduct of biomedical
and behavioral research involving human subjects.” The Commission was
tasked with focusing on the question of the contours and meaning of
“informed consent” in the context of research. In a clear response to the
abuses flagged by Beecher, the Commission was charged to articulate
standards for the ethical conduct of research involving “children, prisoners,
and the institutionalized mentally infirm.”31
As a first order of business, the Commission was tasked with exploring
the question of research involving “living fetuses,” and was directed to
provide a report on this topic no later than four months after its members
assumed office.32 It was also instructed to explore the ethics of
psychosurgery, another topic of the Kennedy hearings. Even more broadly,
the Commission was directed to undertake a special “comprehensive study
of the ethical, legal, and social implications of advance in biomedical and
behavioral research and technology.”33 The Commission was empowered to
hold hearings, take testimony, access information from federal agencies,
and provide recommendations to the President, Congress, and the Secretary
of Health, Education, and Welfare. The National Research Act ordered the
Secretary to publish such recommendations, invite public comment, and
either act on them expeditiously or publish his or her reasons for declining
to do so in the Federal Register, the official daily journal of the U.S.
government. In short, the National Research Act created a commission with
the power to make presumptively actionable recommendations to the U.S.
government on the bioethical issues that scandalized the American public
for nearly a decade.
But the act did still more. It added a provision that the Secretary of
HEW must establish regulations requiring that institutions receiving
funding or support under the new law demonstrate that they have
established an Institutional Review Board to review protocols involving
human subjects and provide for their protection. Furthermore, the Secretary
was charged with promulgating regulations that would govern the conduct
of such research. Finally, the National Research Act imposed a moratorium
on federally funded research “on a living human fetus, before or after the
induced abortion of such fetus, unless such research is done for the purpose
of assuring the survival of such fetus.”34 The ban was to remain in place
until Congress received and considered the report of the National
Commission.
Exactly one week after President Nixon signed the National Research
Act, Senator Kennedy convened the fifth and final hearing, focused solely
on the question of fetal research, including aborted but still-living (though
imminently dying) newborns.35 It was meant to provide a forum for wide
ranging public discussion in advance of the National Commission’s work
on the issue. Kennedy aimed to obtain information about the means, ends,
benefits, and harms of such research, and to explore how it related to the
controversial matter of abortion. Roe v. Wade, decided just eighteen months
prior, roiled the public square and disrupted the legal and policy landscape
by announcing a constitutional right to abortion and a new jurisprudential
framework for its regulation that altered the laws of all fifty states.
Testimony and documentary evidence offered at the hearing described
many of the same experiments reported by the Washington Post a year
earlier. There was also discussion of experiments in which unborn children
slated for abortion were deliberately exposed to rubella in order to study its
mechanism of transmission and effects (for purposes of vaccine
development) after the abortion was completed.
Kennedy called witnesses on both sides of the debate. Nobel Laureate
Dr. Frederick Robbins, Dean of Medicine at Case Western Reserve
University, and Dr. Richard Berman, Chairman of Pediatrics at Columbia
University, offered support for the research, citing its benefits for
biomedical science and clinical practice, and noting that the unborn or
aborted but still-living newborns involved were inexorably dying in any
event. On the other side, Dr. Andre Hellegers, Professor of Obstetrics and
Gynecology and Director of the Kennedy Institute of Ethics at Georgetown
(founded by and named for Senator Kennedy’s family), and Patricia
Policastro, a grassroots pro-life activist and advocate for the cognitively
disabled, argued that it was gravely unjust, abusive, and exploitative to
manipulate and inflict additional injuries on living human subjects slated
for abortion (or just aborted) in research that would provide them with no
benefit. In response to the argument that the research was justified because
such children were going to die in any event, Dr. Hellegers replied, “[I]f
you are not going to make it [meaning, survive] anyway, it is not a warranty
to be experimented upon.”36
For her part, Policastro provided testimony and documentary evidence
recounting controversial examples of live fetal experimentation. For
example, she recalled student protests at Stanford University in response to
a university researcher experimenting on living fetuses. She provided a
statement by one of the student protest organizers that “[Dr. Goodlin’s]
experiments have involved cruel acts, such as slicing open the rib cages of
still living aborted fetuses in order to observe their hearts.”37 Her written
testimony also recapitulated some of the documentary evidence submitted a
year before during the second round of Kennedy hearings.
The hearing concluded and the National Commission commenced its
analysis of research on living fetuses immediately after its members were
chosen and seated. Their work and the report in which it culminated relied
on the evidence presented during the Kennedy hearings. It also animated
and influenced the creation of the strict federal regulations on research
involving living fetuses destined for abortion that are detailed further below.
AN ENDURING BLUEPRINT FOR AMERICAN PUBLIC BIOETHICS
The Kennedy hearings, the National Research Act, and the events to which
they were a response set in place a procedural and substantive foundation
that endures to the present day.
Procedurally, from its inception to today, American public bioethics has
been a reactive form of governance. Scandals occur and the political
branches (or occasionally the judiciary, as in the case of abortion) respond.
The initial reaction nearly always includes an attempt at fact-finding, most
frequently by convening a well-familiar cast of characters—eminent
scientists, famous clinicians, patients’ groups, philosophers, theologians,
activists, government officials, and not infrequently, a representative of the
U.S. Conference of Catholic Bishops. The discourse and debate in these
hearings feature a recurring thrust-and-parry over scientific freedom,
biomedical progress, and efforts to relieve suffering on the one hand, and,
on the other, the competing and constraining goods of respect for the
dignity and autonomy of persons, as well as the practice of humility and the
corollary injunction against “playing God.”
Hearings are often followed by formal state action (such as the
National Research Act) that attempts to address public concerns, even if
only temporarily, like the moratorium on research involving aborted but
still-living newborns. Such legislation often provides a broad-strokes
mandate, and delegates authority to the administrative state—executive
branch agencies such as the Department of Health and Human Services or
federal advisory bodies like the National Commission—to flesh out the
details in a more fine-grained manner, usually in the form of promulgated
regulations which bind with the force of law. The events of 1973 and 1974
are thus emblematic of this enduring procedural blueprint.
The events of 1973 and 1974 show that public bioethics is uniquely
complex and complicated. Not only does it concern the rapidly evolving
and multifarious fields of biomedical science and biotechnology, but the
most difficult ethical, legal, and policy questions feature the possibility of
great goods seamlessly interwoven with potentially catastrophic wrongs.
The researchers described by Beecher, the U.S. Public Health officials in
Tuskegee, and the American doctors traveling to Europe to experiment on
newly aborted still-living infants all intended their work to serve
humanitarian ends for precisely the kinds of subjects they exploited and
abused. In their minds, they were trying to salvage some good from a tragic
circumstance that they did not create—the children of Willowbrook were at
severe risk for hepatitis in any event, the men of Tuskegee were infected
with syphilis and unlikely to get effective care because of their
socioeconomic plight and racial injustice, and the ex vivo neonates were
imminently dying (as intended by the abortion) and beyond the reach of
rescue. The data to be gleaned from these research projects would be
valuable. But the deeper truth is that these researchers intentionally
exploited these intellectually disabled children, poor African American
sharecroppers, and just-aborted but still-living newborns, subjecting them to
risks, manipulation, and painful nontherapeutic interventions that would be
regarded as intolerably unethical if performed without consent on able-
bodied adults of sound mind and sophistication. The researchers embraced
the tragic circumstances as a warrant to conscript these unfortunate victims
into yet another extractive project to serve someone else’s ends, with no
benefits to themselves.
More complicated still are the issues posed by enormously powerful
biotechnologies that can be equally used for good or ill. The Kennedy
hearings featured discussion of novel techniques of neurological or genetic
modification. The technologies themselves were (as all are) neutral and
merely instrumental. They could be used, respectively, both for therapies
for mental illness or heritable disease, or they could be used to exert
unprecedented and unjust psychological control over others, or to pursue
eugenic aspirations. This admixture of good intentions and development of
genuinely beneficial biomedical knowledge combined with the possibility
of great harms and even wickedness is characteristic of many of the issues
of public bioethics, making it a distinctively complicated field of law and
policy.
The events at the birth of American public bioethics likewise illustrate
that the core disputes in this domain are vital conflicts, literally presenting
matters of life and death. Conflicts concern the boundaries of the moral and
legal community, inside of which one is protected by the law and enjoys the
care and concern of others, but outside of which one may be objectified and
even destroyed with impunity for the benefit of others. The children of
Willowbrook, the elderly of the New York Jewish Chronic Disease hospital,
and the people of Tuskegee were singled out for abuse and mistreatment
because their marginal social status rendered them largely defenseless in the
face such injustices. They were effectively invisible until their mistreatment
was exposed by the more powerful. For the just-aborted newborns, the
situation was even more dramatic. Their very moral status as human beings
was (and remains) contested. As will be discussed extensively in Chapter 3,
the question of membership in the human community that anchors the
abortion controversy (which, of course, erupted on the national scene in
1973) infuses the perennial conflicts of American public bioethics. Across
the spectrum of public matters concerning those individuals at the margins
of life’s beginning and end (and the liminal moments in between), the
normative questions of “Who counts?” and “Whose good counts as part of
the common good?” are ubiquitous.
The scandals uncovered by Beecher, of Tuskegee, and involving
research on living just-aborted infants (and the state action taken in
response) likewise manifest the final distinctive feature of American public
bioethics: it is bitterly contested and vexed. This should not be surprising,
given that it is fundamentally concerned with the nature, meaning, and
consequences of birth, life, death, procreation, parenthood, childhood, race,
poverty, illness, scientific freedom, autonomy, dignity, equality, and justice.
Public bioethics squarely and unavoidably poses the questions of “Who are
we and what do we owe to one another?”—matters about which people
differ and feel very strongly, to say the least.
In much of American law and policy there may be a “live and let live”
modus vivendi available, where governmental neutrality can simply make
space for different forms of private ordering, each according to the diverse
normative commitments of various members of the polity. But American
public bioethics presents vital conflicts where either through action or
inaction, the state must take sides. Does the search for useful biomedical
knowledge justify intentionally using and harming disabled children, the
senile elderly, stigmatized minorities, and just-aborted newborns? Does the
very moral and legal status of an individual depend on her circumstances
(such as when she will die imminently because of terminal illness or
someone else’s decision to end her life), her condition of dependence, or
how useful or burdensome she is judged to be by others? Put another way,
American public bioethics unavoidably trades in vital conflicts among
“comprehensive” theories of the good. State neutrality is frequently not a
coherent option.
The events of 1973 and 1974 illustrate the singular substantive nature
of American public bioethics. They make clear that public bioethics
emerges in response to the lived realities and consequences of the
individual and shared lives of embodied beings. Human embodiment entails
vulnerability, the finitude of natural limits, and mutual dependence. These
direct effects of embodiment motivate the pursuit of great goods, but also
create the possibility of profound exploitation and abuse, as we have seen in
the proceeding events. The search for biomedical knowledge and the
practice of medicine aim to ameliorate the afflictions of the body—disease,
injury, and senescence. But those very afflictions create the human
vulnerability that exposes the weak to exploitation by researchers. The
intellectually disabled children at Willowbrook, the elderly patients of the
New York Jewish Chronic Disease Hospital, the men suffering from
syphilis in Tuskegee, and the just-aborted but still-living newborns in
Scandinavia were easily conscripted into involuntary, harmful, and
nontherapeutic research projects precisely because their bodily conditions
and diminished social standing impeded their agency and robbed them of
their voices.
And, finally, the events at the birth of American public bioethics also
usefully point toward the most commonly invoked legal or public policy
solution, rooted in a particular vision of the human being as fundamentally
an individual choosing self. Thus, the solution to the problems of abuse and
exploitation was to seek refuge in legal mechanisms nested in the goods of
autonomy and self-determination, designed primarily to secure the informed
exercise of free will by rational, able-minded persons.
THE DECADES THAT FOLLOWED
In the nearly five decades that followed, three particular vital conflicts,
namely, the legal and policy disputes regarding abortion, assisted
reproduction, and end-of-life decision-making, have been persistent features
of the landscape, and have largely defined American public bioethics. These
vital conflicts are the foci of the inductive anthropological analysis that
comprise the heart of this book. It is thus worth briefly sketching out in a
general way the arc of American public bioethics to illustrate the durability
of these vital conflicts across time, and to prepare the way for the
discussion in later chapters of how embodiment is an essential element to
consider when evaluating the current American legal framework.
1970S
For the remainder of the 1970s, in direct reaction to highly publicized
events, the principal issues of American public bioethics included the law
and policy of human subjects protections, fetal research, gene transfer
research, assisted reproduction, abortion, and end-of-life decision-making.
In 1974, the Department of Health, Education, and Welfare (HEW)
promulgated regulations implementing the National Research Act,
including rules relating to pregnant women, fetuses, prisoners, and the work
of Institutional Review Boards in overseeing research with human subjects.
In 1975, the National Commission issued its first report “Research on
the Fetus,” in which it recommended that HEW could ethically support
research involving fetuses slated for abortion “provided such research is
carried out within the guidelines for all other nontherapeutic research
directed toward the fetus in utero” that is intended to be brought to term.38
They additionally recommended that HEW could support research
involving a just-aborted, nonviable but living newborn, so long as certain
criteria were met, including that the newborn was “less than 20 weeks
gestational age, no significant changes are introduced into the abortion
procedure in the interest of research alone, and no intrusion into the fetus is
made which alters the duration of life.”39 Moreover, the Commission
advised that the research protocol should not affect the decision, timing, and
method of abortion. The Commission stated that such newborns are entitled
to the respect owed to “dying subjects,” whose human dignity warranted
appropriate treatment.40 The Commission also recommended the creation of
a national ethical review body to evaluate cases presenting difficult
questions involving these criteria. Accordingly, HEW propounded
regulations by adopting these recommendations and creating an “Ethics
Advisory Board” (EAB), charged with reviewing and approving proposals
seeking federal funding for research in this domain.
Not surprisingly, in the wake of the Supreme Court’s 1973 Roe v. Wade
decision, the issue of abortion dominated the American public bioethical
landscape throughout that decade (and every decade thereafter). In
response, Congress moved quickly to protect the rights of conscientious
objectors. In 1974, Congress passed the so-called “Church Amendments”
(named for their sponsor, Idaho Democratic Senator Frank Church), which
extended conscience protections to those individuals and entities with
religious or moral objections to performing or assisting performance of
abortions and sterilizations. The Church Amendments also prohibited
institutions that receive certain forms of federal support from discriminating
against health care providers because they performed or refused to perform
abortions on conscientious grounds.41 Also, in 1976, Congress passed an
appropriations restriction colloquially known as the “Hyde Amendment,”
forbidding the use of Medicaid funds to pay for most abortions. The law has
changed slightly over time, but in its essence has been reauthorized every
year since.42 In 1977, in Maher v. Roe, the U.S. Supreme Court upheld as
constitutional a state regulation that restricted Medicaid funding for first-
trimester abortions to those procedures deemed “medically necessary.”43
In 1976, end-of-life decision-making emerged as a signal issue in
American public bioethics with the New Jersey Supreme Court decision In
re Quinlan. The case involved a dispute over the proper care for a
profoundly cognitively disabled woman between her father, who wished to
discontinue life-sustaining measures (namely, her ventilator) and her health
care providers, who refused. Ultimately, the Supreme Court of New Jersey
held that Quinlan’s right to privacy entailed the freedom to choose to
discontinue life-sustaining measures, and that this right could be exercised
by her proxy decision-makers.44 Though the ventilator was removed,
Quinlan surprisingly continued to breathe unaided and died nine year later
in 1985.45
In 1978, Louise Brown—the first baby who had been conceived by in
vitro fertilization—was born. That same year, the HEW Ethics Advisory
Board (EAB) agreed to review a research proposal involving in vitro
fertilization. Federal regulations required EAB evaluation prior to
authorization of federal funding by HEW of any project involving IVF. The
EAB deliberated and concluded in a 1979 report that research involving
human in vitro fertilization is “ethically defensible but still legitimately
controverted.”46 It also recommended that human IVF research is acceptable
from an ethical standpoint, subject to certain criteria. It further
recommended that HEW provide support for such research, though the
EAB refrained from addressing the level of funding. This EAB report
(though never implemented) proved to be a crucial development for the
public bioethics matters touching and concerning both assisted reproduction
and research involving human embryos.
The final key development of the 1970s for public bioethics in America
was the publication in 1979 of the “Belmont Report” by the National
Commission. This report constituted the Commission’s response to the
charge in the National Research Act to articulate the “basic ethical
principles that should underlie the conduct of biomedical and behavioral
research involving human subjects.” The Commission identified three such
ethical principles, namely “respect for persons,” “beneficence,” and
“justice.” Respect for persons entails respect for autonomous decision-
making and protection of those incapable of such choices. “Beneficence” is
a principle that imposes the obligations first, to do no harm, and second, to
seek to maximize benefits while minimizing risks. Finally, “justice” is a
norm concerned with fairly allocating the burdens and benefits of scientific
research involving human subjects.47
Much of the report is dedicated to discussing how these principles
might be applied, with special emphasis on informed consent, risk
assessment, and selection of subjects. The report has had enormous
worldwide impact on the discourse and practice of human subjects research,
despite its failure to define and explore in-depth key concepts, most
importantly the meaning of “persons.” Subsequent application of the
Belmont Report by policymakers and commentators alike has shifted
emphasis from respect for persons generally to one narrow aspect discussed
in the report, namely, the good of personal autonomy. This shift both
reflects and reinforces the vision of human identity and flourishing
(expressive individualism) critiqued in the chapters that follow.
As the decade drew to a close, the National Commission’s term
expired, and Congress created by statute a successor entity in the executive
branch entitled The President’s Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research.
1980S
The 1980s saw the continuation of law and policy disputes over abortion,
fetal research, assisted reproduction, and research involving human
subjects, but also witnessed the emergence of new conflicts regarding the
definition of death, end-of-life decision-making on behalf of disabled
newborns, and related matters of organ transplantation policy.
Reacting to developments in medical techniques enabling clinicians to
artificially sustain respiration and circulation—the traditional indicators of
biological life, the absence of which signaled “death”—the President’s
Commission issued a report in 1981 that sought to offer a new uniform
definition of death, faithful to the physiological realities of the phenomenon
and applicable across a wide variety of ethical, legal, and public policy
contexts. Specifically, in its report, succinctly entitled “Defining Death,” the
President’s Commission proposed the Uniform Determination of Death Act,
which provided that “an individual who has sustained either (1) irreversible
cessation of circulatory and respiratory functions, or (2) irreversible
cessation of all functions of the entire brain, including the brain stem, is
dead.”48 This proposal was approved by the National Conference of
Commissioners on Uniform State Laws, the American Bar Association, and
the American Medical Association. It has since been adopted as the law in
nearly every state in the union, thus transforming the American landscape
of criminal law, tort law, estate law, insurance law, and the law and policy
of organ donation.
Around the same time, in 1982 and 1983, a series of reports emerged
about parents refusing consent for life-saving medical treatments for their
disabled newborns that would otherwise be provided to healthy babies. In
one case from Indiana, parents of a newborn (“Baby Doe”) with Down’s
Syndrome refused consent to correct an esophageal atresia and directed that
food and water be withheld. The hospital objected and filed suit, but the
baby died before the Indiana Supreme Court could hear the case. In another
case from New York, a private citizen unsuccessfully tried to intervene on
behalf of a child with spina bifida whose parents had declined a life-
prolonging intervention. Led by President Reagan and his Surgeon General,
the federal government sought to intervene first by administrative rule,
ostensibly implementing a federal statute prohibiting discrimination on the
basis of disability. The rule directed facilities receiving federal funding to
take steps to prevent the neglect of disabled newborns. In 1986, a fractured
Supreme Court held in Bowen v. American Hospital Association that the
federal regulation was invalid because it exceeded the authority of the
underlying disabilities statute it was meant to implement.49 While this case
was being litigated, Congress embedded federal protections for disabled
newborns by amendment of the Child Abuse Prevention and Treatment Act,
which was passed in October of 1984.50
Closely connected to the question of death and dying, the issue of
organ donation and transplantation likewise emerged in the 1980s as a core
issue in American public bioethics. In response to a shortage in donor
organs, a demand for transplantations, and lack of clarity regarding the law
concerning property in human remains, Congress adopted the National
Organ Transplant Act (NOTA) in 1984.51 The law was designed to create a
national procurement framework that would promote donation of organs.
But it also clearly forbade the buying and selling of organs for
transplantation out of ethical concerns regarding commodification of the
body and exploitation of the poor.
Just as in the 1970s, the issues of human subjects protections, fetal
research, and abortion remained active concerns for lawmakers, judges, and
the public at large. The Department of Health and Human Services in 1981
revised federal regulations regarding Institutional Review Boards to
conform to recommendations by the National Commission, and the FDA
followed suite, within the boundaries of their statutory authority. In 1982,
the President’s Science Adviser in the Office of Science and Technology
Policy created a committee tasked with developing a common federal
policy for protection of human subjects. This proposed policy was
published in 1986 and adopted in 1991 by multiple federal agencies as the
“Common Rule.”52
The public struggle over the ethics, law, and policy regarding fetal
research continued. In 1985, Congress passed the Health Research
Extension Act, which reauthorized the National Institutes of Health (the
primary research funding arm of the federal government), prohibiting
federal support for research on nonviable newborns or newborns of
uncertain viability unless the intervention was meant to “enhance the well-
being or meet health needs of the fetus or enhance the probability of its
survival to viability; or will pose no added risk of suffering injury, or death
to the fetus.” Moreover, the law provided that in federal human subjects
regulations the risk standard must “be the same for fetuses which are
intended to be aborted and fetuses which are intended to be carried to
term.” The act also created the “Biomedical Ethics Advisory Committee,”
which was to study the “nature, advisability, and biomedical and ethical
implications” of exercising any waiver of the human subjects protections
applicable to live fetal research.53 The BEAC met only twice and its work
was stymied over abortion politics. Its appropriations were halted and its
term expired in 1990 without making any recommendations.
In 1988, the public question shifted its focus from research on living
fetuses and newborns to research involving cadaveric fetal tissue. Assistant
Secretary for Health and Human Services Robert Windom announced a
moratorium on transplantation research with fetal tissue taken from
abortions until an advisory committee could examine the question and
report back. In December 1988, the NIH Human Fetal Tissue
Transplantation panel issued a report responding to the questions posed by
Windom and recommending that such research receive federal support
subject to certain conditions.
For example, the decision to terminate the pregnancy and consent to
the abortion must be prior to and separate from the decision to donate fetal
tissue for research; the pregnant woman may not designate the transplant-
recipient of the tissue; the pregnant woman should not be induced to
terminate pregnancy for the sake of providing tissue; prior informed
consent of the pregnant woman should be obtained before using the tissue
in research; and the timing and method of abortion should not be influenced
by the potential uses of fetal tissue.
No action was taken on the NIH report until November 1989, when the
Secretary of HHS advised the Director of NIH that he intended to continue
indefinitely the moratorium for federal funding on research involving
transplantation of human fetal tissue derived from induced abortions.
Abortion likewise loomed large in the 1980s, with several important
decisions of the Supreme Court. Two decisions bookending the decade bear
particular mention. First, in Harris v. McRae, the U.S. Supreme Court
affirmed the constitutionality of the Hyde Amendment.54 Second, in 1989,
in a fractured opinion in Webster v. Reproductive Health Services, the Court
affirmed the constitutionality of a Missouri law that, among other things,
banned the use of public employees and facilities for performance or
assistance of elective abortions.55 A plurality of Justices pointedly refused
to overturn Roe v. Wade, to the chagrin of some Justices and to the relief of
others. Thus, Webster signaled that the jurisprudence of abortion was
unstable and remained a source of contention among the justices along
multiple lines of concern.
Finally, assisted reproduction emerged once again as a key locus of
public bioethical controversy at the end of the 1980s, with the high-profile
case of In re Baby M. This case featured a dispute between a surrogate,
Mary Beth Whitehead, and prospective parents including William Stern
(whose sperm was used to impregnate Whitehead) and his wife Elizabeth.
Following the birth of the baby, Whitehead changed her mind and sought
custody of the child. The Sterns, in turn, sued to enforce the surrogacy
contract. The New Jersey Supreme Court held in 1988 that the contract was
invalid on the grounds that such agreements violated public policy. On
remand, the New Jersey Family Court concluded that the “best interests of
the child” would be served by awarding custody to Mr. Stern, with rights of
visitation granted to Whitehead.56
1990S
Into the 1990s American public bioethics was dominated by the issues of
abortion, fetal tissue research, embryo research, assisted reproduction, end-
of-life decision-making, and assisted suicide. The events of this decade will
be unpacked in further detail in the chapters that follow.
The first (and only) federal statute governing the practice of assisted
reproduction—the Fertility Clinic Success Rate and Certification Act—was
passed in 1992. It provided a mostly voluntary consumer protection
framework, requiring clinics to report certain information relevant to
patients (for example, success rates), published annually by the Centers for
Disease Control. It also offered a model laboratory certification program,
which appears never to have been adopted in the United States by
researchers or practitioners of IVF.57 That same year, in the influential case
of Davis v. Davis, the Supreme Court of Tennessee decided that while
frozen IVF embryos are, legally speaking, neither “persons” nor “property,”
in a custody dispute between a former married couple, the husband’s desire
to destroy the embryos in order to avoid procreation should prevail over the
wife’s desire to donate them to another infertile couple.58
The most important Supreme Court precedent in the jurisprudence of
abortion was decided in 1992, in the case of Planned Parenthood v. Casey.
A three-judge plurality affirmed the “core-holding” of Roe v. Wade but
adopted a new and ostensibly more permissive framework for evaluating
state and federal restrictions on abortion. Under the new rule, states could
regulate abortion prior to viability so long as they did not impose an “undue
burden” on a woman’s ultimate right to terminate her pregnancy. After
viability, the state could restrict abortion, so long as such laws had a rational
basis and included exceptions for cases in which a woman’s life or health
were endangered by the continued pregnancy.59 The Court did not specify
what constituted an “undue burden,” but affirmed all but one of the
challenged restrictions of the Pennsylvania Abortion Control Act, including
a 24-hour waiting period, an informed consent provision, and a parental
consent requirement. The framework set forth in Casey endures to the
present day and governs all efforts to regulate abortion at both state and
federal levels.
Congress and the newly elected President Clinton had an immediate
and outsized impact on the long simmering debate over the government’s
role in fetal tissue research.
President Clinton lifted the administrative moratorium on research
involving fetal tissue procured from induced abortions. More importantly,
Congress passed (and Clinton signed) the NIH Revitalization Act of 1993,
which included a number of important provisions. First, it set in place a
framework for the federal support of fetal tissue research, imposing
restrictions that meant to insulate the decision for and manner of providing
an abortion from the choice to donate fetal tissue for research. The new law
included informed consent provisions requiring the pregnant woman to
warrant that she is not permitted to designate (or even know the identity of)
any recipient of transplantations of the procured tissue. Moreover, the
attending physician must sign a statement averring that the woman’s
consent to the abortion was obtained prior to seeking consent for tissue
donation, and that “no alteration of the timing, method, or procedures used
to terminate the pregnancy was made solely for the purposes of obtaining
the tissue.” The act also prohibited any person from buying or selling fetal
tissue for valuable consideration.60
The NIH Revitalization Act likewise had an important impact on the
federal funding of embryo research—an issue that would become the most
hotly-contested question in American public bioethics for two decades. The
act revoked the HHS regulation requiring Ethics Advisory Board approval
for NIH research funding proposals involving IVF embryos. President
Clinton directed NIH Director Harold Varmus to convene an NIH Human
Embryo Research Panel to offer recommendations for federal funding
criteria and procedures. The Panel submitted its recommendations in
September 1994, most of which were accepted by the President. Before
President Clinton’s NIH could authorize funding, however, party control of
Congress changed hands from Democrat to Republican, and the new
majority adopted in 1996 an appropriations rider known as the “Dickey-
Wicker Amendment” (named for its sponsors), forbidding federal funding
for research “in which” embryos are created, destroyed, or subjected to
more than the minimal risks allowed by federal human subjects regulations
for fetuses in utero.61 This new law seemed to foreclose the possibility of
federal funding for research involving IVF embryos.
The next year, the birth of “Dolly the Sheep,” who had been conceived
by cloning (somatic cell nuclear transfer), electrified the scientific
community and captured the imagination of the public worldwide. In
reaction to this event, there was a cascade of proposed legislative activity at
the state, federal, and international levels seeking to ban different
applications of human cloning. While these efforts met some success at the
state and intergovernmental levels, the U.S. Congress was never able to
settle on legislation banning or regulating human cloning.
In 1998, the first published reports of isolating human embryonic stem
cells by researcher James Thomson of the University of Wisconsin
reinvigorated the desire of the scientific community and its allies in
government to find some way to support this work through federal
funding.62 This at first seemed a difficult task, as the Dickey Amendment
forbade funding for research involving the destruction of living human
embryos—a necessary step in procuring embryonic stem cells. In response
to this challenge, President Clinton charged the General Counsel of HHS,
Harriet Rabb, to analyze the precise language of the Amendment in order to
discern whether and how federal funding for embryonic stem cell research
might nevertheless be possible under the relevant law. In 1999, Rabb
submitted a memorandum arguing that because the Dickey Amendment
only prohibited funding for research “in which” embryos are destroyed, the
federal government could nonetheless lawfully provide funding for research
on cultured embryonic stem cell lines, so long as it did not subsidize the
prior embryo-destroying act from which such lines were derived. Satisfied
by her legal analysis, President Clinton began to make arrangements to
provide funding to this new domain of research. However, the 2000 election
of President Bush would frustrate his designs.
The beginning of human life was not the only locus of dispute in
American public bioethics in this decade; there were also momentous
developments concerning the law and policy of death. In 1990, in a case
called Cruzan v. Director, Missouri Department of Health, a bare majority
of the U.S. Supreme Court appeared to recognize a right to decline life-
sustaining measures, but affirmed as constitutional a state law requiring
proof by the exacting standard of clear and convincing evidence of an
incompetent patient’s desire to discontinue life support (in this case,
artificial nutrition and hydration).63
Four years later, the state of Oregon adopted by referendum the
nation’s first law legalizing physician-assisted suicide. The measure was
approved by a 51.3 percent to 48.7 percent vote.64 Implementation of the
law was delayed due to a court injunction, but ultimately went into effect in
1997.
Finally, in 1997, in companion cases Washington v. Glucksberg and
Vacco v. Quill, the Supreme Court unanimously decided that there is no
right to physician-assisted suicide in the U.S. Constitution. Accordingly, the
Court held that state laws banning physician-assisted suicide do not violate
the Constitution’s due process or equal protection clauses.65
2000S
As the calendar turned to the first decade of the new millennium, American
public bioethics was primarily consumed by debates over embryonic stem
cell research. The issues of abortion and end-of-life decision-making were
also prominent matters of public debate and governance. These
developments figure prominently in the discussion in subsequent chapters.
From his inauguration in January 2001, the question of whether and
how to provide federal funding for embryonic stem cell research was
perhaps the most watched and hotly debated policy matter confronting
President Bush’s new administration. On August 9, 2001, President Bush
announced his policy in the first televised address by a U.S. President
entirely devoted to public bioethics.66 President Bush announced a policy
meant to advance the science of stem cell research without facilitating or
creating incentives for the future use and destruction of human embryos.
Concretely, by Executive Order, he would offer funding for research on
stem cells derived from nonembryonic sources (for example, “adult” stem
cells), as well as for research on existing embryonic stem cell lines derived
before the announcement of the new policy. There would be no funding for
any research on embryonic stem cell lines derived after the policy, as this
might create incentives to destroy embryos (a necessary step in creating
such stem cell lines). President Bush would later veto two Congressional
attempts to liberalize the policy.
Meanwhile, states around the country adopted their own laws
concerning embryonic stem cell research and the related matter of human
cloning. Some states moved to ban these practices, whereas others moved to
fund them. Most notably, in 2004, the state of California voted by
referendum to approve Proposition 71, allocating $3 billion for stem cell
research and amending the state Constitution to make cloning for
biomedical research an enumerated right.67
Also in 2004, Congressman Dave Weldon of Florida successfully
attached an appropriations rider that forbade the issuing of any patent “on
claims directed to or encompassing a human organism,” including human
embryos, though it was silent and thus permissive of the issuance of patents
on embryonic stem cell lines.68 This provision was consistent with a
proposal under discussion by President Bush’s Council on Bioethics, later
published in its 2004 report, Reproduction and Responsibility: The
Regulation of New Biotechnologies. This appropriations provision was later
permanently codified in 2011 as part of the America Invents Act.
In 2005, the United States joined a majority of member states at the
United Nations in voting for the Declaration on Human Cloning, a
nonbinding measure calling for the banning of all forms of human cloning.
That same year at UNESCO, member states adopted unanimously the
Universal Declaration on Bioethics and Human Rights.
In 2007, two papers published in the journals Science and Cell
described a revolutionary development for “reprogramming” somatic cells
to a pluripotent state, perhaps rendering them the functional equivalent of
embryonic stem cells. The new cells, dubbed “induced pluripotent stem
cells” (iPSCs), could be created without the controversial step of using and
destroying human embryos.69 One of the researchers involved, Shinya
Yamanaka, would receive the 2012 Nobel Prize in recognition of this work.
President Bush, responding in part to a white paper of his Council on
Bioethics (“Alternative Sources of Human Pluripotent Cells”) issued an
Executive Order in 2007 meant to provide enhanced support for this new
and promising avenue of research.
In March 2009, President Obama revoked all of his predecessor’s
executive orders regarding embryonic stem cell funding, and announced
that he would adopt a policy offering funding to “responsible, scientifically
worthy stem cell research, including embryonic stem cell research, to the
extent permitted by law.”70 The NIH published guidelines in July 2009
implementing this order.
The first decade of the twenty-first century also saw a great deal of
activity in the domain of abortion law and policy. In 2000, the Supreme
Court struck down as unconstitutional dozens of state laws banning intact
dilation and extraction abortions, a controversial procedure known as
“partial birth abortion.”71 In 2003, the U.S. Congress passed and President
Bush signed a more refined federal version of these laws known as the
Partial Birth Abortion Ban Act. During the late 1990s, Congress had passed
similar bills twice, but President Clinton had vetoed them. The 2003 law
was immediately enjoined as it made its way to the Supreme Court, which
affirmed the law as constitutional in Gonzales v. Carhart, announced in
2007.72
In response to reports of newborns surviving abortions and being left to
die without medical aid, Congress passed the Born-Alive Infants Protection
Act of 2002. The act clarified that in federal law and policy the words
“person,” “human being,” “child,” and “individual” include “every infant
member of the species homo sapiens who is born alive at any stage of
development.”73 In this way, the law meant to extend the protections of
federal law (including provisions mandating emergency medical care) even
to infants born alive following an abortion. However, the law did not
provide for any specific mechanisms or enforcement nor penalties for its
violation.
In 2004, responding to the highly publicized case of the murder of Laci
Peterson and her unborn child Conner, Congress enacted the Unborn
Victims of Violence Act (also called Laci and Conner’s Law). The bill
made it a separate crime to cause the death of or bodily injury to an unborn
child at any stage of development in the commission of certain specified
violent federal crimes.74
In 2005, the Hyde-Weldon amendment was added to the HHS
appropriations bill, which provided that no federal funding would be
authorized “for any federal agency or program, or to a state or local
government” if they subject any individual or entity to discrimination on the
grounds that they do not “provide, pay for, provide coverage of, or refer for
abortions.”75 This rider has been attached to every subsequent HHS
appropriations bill to the present day.
In 2006, following a recommendation by the President’s Council on
Bioethics in its 2004 report Reproduction and Responsibility: The
Regulation of New Biotechnologies, Congress passed the Fetus Farming
Prohibition Act, which banned the knowing solicitation or receipt of human
fetal tissue donated following a pregnancy deliberately initiated to provide
research materials, or derived from a human embryo or fetus gestated in the
uterus of a nonhuman animal.76
Once again, in addition to the issues of embryo research and abortion,
end-of-life decision-making resurfaced as a matter of public contention. In
2005, literally every branch of the U.S. and Florida governments were
embroiled in a controversy about the treatment of Theresa Marie Schiavo, a
profoundly cognitively disabled woman. Schiavo’s parents and husband had
been locked in a bitter disagreement over continuing provision of artificial
nutrition and hydration. After the Florida courts ordered life-sustaining
measures to be terminated, the Florida legislature passed a law allowing the
Governor to stay the judicial order to provide time to appoint a guardian for
Schiavo and to investigate the matter. The Florida Courts ultimately
declared this law unconstitutional, after which the U.S. Congress passed
Terri’s Law, granting federal jurisdiction to hear civil rights claims on her
behalf. Ultimately, the federal courts declined to hear any claims and
Schiavo died from dehydration.
In 2008, the state of Washington became the second state to legalize
physician-assisted suicide by referendum. In 2009, the Montana Supreme
Court declared that physician-assisted suicide was not prohibited under
current state law.
2011 TO PRESENT
From 2011 to the present, the dominant public bioethics questions in
America have likewise centered on end-of-life matters, abortion, and
research involving gene modification, including “gene editing” of human
embryos, all of which are highly relevant to the analysis of the “vital
conflicts” of public bioethics in Chapters 3, 4, and 5.
In 2012 Jennifer Doudna and coauthors published “A Programmable
Dual-RNA-Guided Endonuclease in Adaptive Bacterial Immunity” in
Science, describing a technique for “site-specific DNA cleavage” and
“RNA-programmable genome editing.”77 The following year, Feng Zhang
and coauthors published “Genome Engineering Using the CRISPR-Cas9
System” in Nature discussing the use of similar techniques “to facilitate
efficient genome engineering.”78 These papers (and the related patent
disputes among the competing research teams) created a sensation around
the world, raising the possibility of revolutionary targeted medical
treatments and perhaps even ecological interventions at the genomic level.
Intense debate focused on the possibility of modification that would effect
heritable changes—altering the so-called “germ line,” and thus
transforming the genetic constitution of future generations. Alongside the
optimism and curiosity arose deep worries about potential biosafety threats
arising from unintentional or perhaps even intentional applications of these
powerful techniques. In 2015, the journal Protein & Cell published a paper
describing how researchers in China had used CRISPR-Cas9 to edit the
genomes of living human embryos (which were later discarded).79 In
response to these developments, the National Academies of Science
convened an International Summit on Gene Editing in 2015. That same
year, Congressman Robert Aderholt attached an amendment to an
appropriations bill preventing the Food and Drug Administration from
considering or approving any research proposal “in which a human embryo
is intentionally created or modified to include a heritable genetic
modification.”80
Relatedly, the ethical, legal, and policy questions regarding the
creation, modification, and destruction of human embryos were sharpened
further in 2017, when George Church and coauthors published “Addressing
the Ethical Issues Raised by Synthetic Human Entities with Embryo-Life
Features.”81 This same year, researcher Shoukhrat Mitalipov successfully
edited the genomes of human embryos (later discarded) at the Oregon
Health Sciences University.82
In 2019, the first children subject to germline gene editing were born.
Lulu and Nana, twin girls from China, had their embryonic genomes edited
by American-trained scientist, He Jiankui, to modify gene CCR5,
associated with HIV-resistance.83 The announcement was met with
widespread criticism and condemnation.
The second decade of the millennium also featured a flurry of activity
surrounding the question of death and dying. In 2012, the citizens of
Massachusetts defeated a ballot measure to legalize physician-assisted
suicide. A year later, the Vermont Legislature legalized the practice in that
state. This was followed by legalization of physician-assisted suicide in
California and Colorado in 2016, and the District of Columbia in 2017,
Hawaii in 2018, and New Jersey and Maine in 2019.
In 2013, there was a widely publicized dispute between the family of a
disabled thirteen year old named Jahi McMath and the hospital caring for
her about whether she was properly diagnosed as “brain dead” (and thus
legally deceased under relevant law). A judge concluded that she was, but
the hospital released her and the family transferred her to another location
for care. She died at home in 2018.84 Relatedly, in 2015 there was a dispute
between a cancer patient, Chris Dunn, and a Texas hospital over whether
further life-sustaining treatment for him should be withdrawn on the
grounds of futility. The conflict centered on the application of a state law in
Texas which authorizes physicians to discontinue care over the objections
of the patient and his representatives. Dunn pled for continued life-
sustaining measures in response to efforts by his treating physicians who
sought to terminate such care. Though the hospital prevailed in court, it
continued to provide care for him voluntarily until his natural death shortly
thereafter.85
Finally, the second decade of the twenty-first century saw further
developments in the law and jurisprudence of abortion. States passed a
series of laws during this period to regulate and restrict abortion, nearly all
of which were challenged in court immediately upon passage. HB2, passed
by the Texas legislature in 2013, provides an illustrative example. Its fetal
pain law sought to ban abortions after twenty weeks. In response to the
prosecution of Dr. Kermit Gosnell for infanticide, manslaughter, and other
shocking abuses in his unsanitary and illegal abortion practice in
Philadelphia, HB2 sought to impose more stringent regulations on abortion
clinics. Specifically, the law required abortion providers to have hospital
admitting privileges within a certain geographic radius of their practice, and
required abortion clinics to meet extensive standards applicable to
ambulatory surgical centers. Both of these provisions were struck down by
the U.S. Supreme Court as unconstitutional in a 5–3 decision announced in
2016 (Whole Woman’s Health v. Hellerstedt).86
A VISION
Since its inception, the field of public bioethics has captured the attention of
the political and judicial branches of government, and the imaginations of
citizens across the nation. It is an area of law and policy uniquely oriented
to the challenges of human embodiment and public matters involving the
protection of persons who are vulnerable, dependent, or confronted with the
finitude of natural limits. It is a domain of complex, bitterly contested
public questions of great moment concerning the unborn, children, the
disabled, the elderly, the infertile, stigmatized minorities, and the dying.
Despite the manifold human dimensions and complexity of these
disputes, a closer investigation reveals that the legal, political, and
theoretical resources deployed to resolve them are relatively limited and
simplistic, focusing mostly on legal mechanisms and analytic categories
restricted to the ethical framework of autonomy and self-determination.
While these goods and principles are important, and well suited to resolving
conflicts among free and independent individuals operating at the height of
their cognitive powers, they are not adequate for the lived reality of
dependence, vulnerability, and diminished freedom that characterizes the
human context of public bioethics.
At its foundation, American public bioethics has a reductive and
incomplete vision of human flourishing and identity, and because of this it
is unable to respond fully and coherently to the challenges intrinsic to the
individual and shared lives of embodied beings, namely, the experience of
vulnerability, dependence, and natural limits. American public bioethics
falls short as a form of law and policy because it is rooted in a mistaken
anthropology. In other words, American public bioethics is operating from a
flawed anthropological point of departure, which leads in turn to
inadequate legal tools of analysis.
Improving American public bioethics thus requires a revision of its
anthropological foundations. Through an “anthropological” analysis in the
next chapter I will provide a brief discussion of the errors of this field,
along with the beginnings of an augmented account of human identity and
flourishing that provides a better and truer foundation for law and policy in
this domain.
It is to these questions that the next chapter turns.
2
An Anthropological Solution
Everyone has an anthropology. There is no not having one. If a man says he does not,
all he is saying is that his anthropology is implicit, a set of assumptions he has not
thought to call into question.
—WALKER PERCY, “REDISCOVERING A CANTICLE FOR LEIBOWITZ” IN Signposts in a Strange Land
What do law, policy, and politics have to do with “anthropology,” defined in
its original sense as an account of what it means to be human? At the very
deepest level, law and public policy exist for the protection and flourishing
of persons. Thus, all law and public policy are necessarily built upon
presuppositions about what it means to be and thrive as persons.
Accordingly, the pathway to the deepest understanding of the law requires a
searching anthropological inquiry. The wisdom, justice, and intelligibility of
the law’s means and ends are fully graspable only once its underlying vision
of human identity and flourishing is uncovered and assessed.
This is no small task. The question of human identity has bedeviled
humankind since the emergence of the capacity for self-reflection. As
ethicist James Gustafson observed, this question is “probably as old as
critical human self-consciousness.”1 In his 1944 “An Essay on Man,”
German philosopher Ernst Cassirer noted that in the history of philosophy,
the matter of human self-knowledge has been “the Archimedean point, the
fixed and immovable center of all thought.”2 Augustine lamented “I have
become a puzzle to myself and this is my infirmity.”3 And the Psalmist
famously asked the creator of the universe, “What is man that you should
be mindful of him?”4
Even the very definition of “person” is itself perennially vexed. The
word is etymologically connected to the Latin word “persona,” which
referred to the mask worn by ancient Etruscan and Roman stage actors,
through which their voices (and thus their roles) were expressed. As
philosopher Kenneth Schmitz has observed, this connection to speech led
Latin teachers of grammar to adopt the term “person” for the singular and
plural forms of verb conjugation.5 It is also connected to the Greek word
“prosopon,” variously translated as face, mask, stage character, and
eventually person. From Boethius’s famous definition of “person” offered
in the sixth century (“an individual substance of a rational nature”), to
Locke’s (“a thinking intelligent being that has reason and reflection and can
consider itself as itself”), to Joseph Fletcher’s more recent multiple
“indicators of humanhood,” and Mary Anne Warren’s “five traits which are
most central to the concept of personhood,” the substance and even
intelligibility of “person” (and who counts as a person) as a descriptive and
normative matter have been vigorously contested.6 Indeed, German
phenomenologist Max Scheler lamented that the advance of knowledge
across the disciplines has resulted in more rather than less perplexity on this
matter: “We have a scientific, philosophical, and theological anthropology
which know nothing of each other.… The ever growing multiplicity of
sciences studying man has much more confused and obscured than
elucidated our concept of man.”7
And yet, any legal and policy apparatus that aims at the protection of
persons and the promotion of their flourishing necessarily depends upon a
prior, if unstated, vision of who and what persons are. This is, a fortiori,
true of American public bioethics, which regularly engages the “boundary”
question of who counts as a person—as a member of the legal and moral
community whose rights and interests must be respected, whose good must
be considered as an element of the common good. When it enters the law,
the grounding vision of human identity and flourishing can mean the
difference between life and death (or even how these concepts are defined).
Relatedly, as will be discussed further below, sociologist John Evans
has shown empirically that one’s anthropological premises strongly
correlate with one’s view of the scope and substance of human rights.8
Different anthropologies expand or contract the circle of human concern
and protection.
The primary substantive claim of this book emerges from an inductive
legal analysis (that is, taking the law as it currently exists) meant to uncover
the “anthropology”—the premises about human identity and flourishing—
of American public bioethics. That is, when interrogated from an
anthropological perspective, the law and policy in this area are in certain
core matters deeply flawed, especially as evidenced by its response to those
who are vulnerable, dependent, or particularly constrained by natural limits.
These defects in law and policy follow directly from the adoption of a
reduced and incomplete vision of persons that fails to take seriously the
meaning and consequences of human embodiment. To remedy this problem,
the law must expand and augment its grounding conception of human
identity and flourishing and integrate goods, practices, and principles that
are appropriate to the fully lived reality of embodied human beings.
Before turning to the specific case studies that bear out this proposition
(and point a possible way forward), it is necessary to identify and offer a
preliminary discussion and critique of the anthropological conception—the
vision of human identity and flourishing—that will emerge in the inductive
analysis in the chapters that follow as the key anchor and driver of the law
and policy of some of the core vital conflicts in American public bioethics.
Put most succinctly, the dominant anthropology of American public
bioethics in these conflicts most closely resembles what social scientist
Robert Bellah first termed “expressive individualism.”9
EXPRESSIVE INDIVIDUALISM
From 1979 to 1984, sociologist Robert Bellah and colleagues conducted
interviews with 200 individuals, in efforts to identify and understand how
Americans understood themselves as persons and how they derived
meaning for their lives. In the 1985 classic Habits of the Heart, Bellah
detailed his team’s findings and identified a vison of human identity and
flourishing that he dubbed “expressive individualism.” Across a variety of
contexts, both public and private, people interviewed by Bellah affirmed the
view that the individual person considered in isolation is the fundamental
and defining normative reality. Bellah found that human flourishing
consists in the expression of one’s innermost identity through freely
choosing and configuring life in accordance with his or her own distinctive
core intuitions, feelings, and preferences.
This unique anthropology combining individualism and this sense of
“expressivism” has been further explored, deepened, and critiqued in
various ways by contemporary philosophers such as Charles Taylor,
Alasdair MacIntyre, Michael Sandel, and others. As will be shown in the
chapters that follow, this is the anthropology that underwrites some of the
core vital conflicts of American public bioethics. The work of these
thinkers is thus highly valuable for the task of illuminating and critiquing
this domain of law and policy.
But first, it is necessary to more specifically and succinctly summarize
the vision of human identity and human flourishing that will emerge from
the following chapters’ inductive analyses of concrete domains of law and
policy.
The anthropology of American public bioethics begins with the
premise that the fundamental unit of human reality is the individual person,
considered as separate and distinct from the manner in which he is or is not
embedded in a web of social relations. Persons are identified with and
defined by the exercise of their will—their capacity for choosing in
accordance with their wants and desires. Thus, this conception of
personhood decisively privileges cognition as the indispensable criterion for
membership in this category of beings. In this way, it appears to be
dualistic, distinguishing the mind from the body. The mind and will define
the person, whereas the body is treated as a contingent instrument for
pursuing the projects that emerge from cognition and choice. Moreover,
under this anthropological approach, capacity for cognition is not only the
hallmark of individual personhood, it defines the very boundaries of the
world of persons versus nonpersons. (This, of course, becomes of crucial
importance when operationalized in the vital legal and policy conflicts of
American public bioethics.) Thus, given its singular focus on the thinking
and choosing atomized self, the anthropology of American public bioethics
represents a strong form of individualism.
The anthropology of American public bioethics is likewise strongly
expressivist in its conception of human flourishing. As used here,
“expressivism” holds that individuals thrive insofar as they are able to
freely create and pursue the unique projects and future-directed plans that
reflect their deeply held values and self-understanding. These projects and
purposes emerge from within the self; neither nature, “natural givens,” nor
even the species-specific endowments and limits of the human body, dictate
the ends of individual flourishing. Put another way, the anthropology of
American public bioethics is strongly anti-teleological. It does not
recognize natural “ends” that guide understanding of the flourishing of the
individual human.
Within the anthropological framework of American public bioethics, it
seems that human relationships and social arrangements are likewise judged
in light of how well or poorly they serve the self-defining projects of the
individual will. Under this account, individuals encounter one another as
atomized wills. These individuals come together in collaboration to pursue
mutually beneficial ends and separate when such goals are reached or
abandoned. Or perhaps they encounter one another as adversaries, who
must struggle to overbear one another in order to achieve their self-defined
and self-defining objectives.
Accordingly, the anthropology of expressive individualism elevates the
principles of autonomy and self-determination above other competing
values in the hierarchy of ethical goods, such as beneficence, justice,
dignity, and equality. When operationalized in law and policy, the focus
turns to eliminating obstacles, perhaps even including natural limits, that
impede the pursuit of the self-defining projects of the will. As will be seen,
given its history, tradition, and culture, in American public bioethics, the
primary mechanism toward this end is the assertion of “negative” rights.
The concepts of “individualism” and “expressivism” have received a
great deal of attention—both positive and negative—from philosophers,
theologians, writers, and artists from antiquity to the present day. There is a
rich and extensive literature exploring, critiquing, and disputing these
notions. There are, to be sure, many “individualisms,” variously attacked
and defended by theorists across the history of ideas. Philosopher Roderick
Long has offered a fascinating and lengthy taxonomy of individualisms and
individualists stretching from Plato’s rendering of Callicles (in Gorgias),
Glaucon, Adeimantus, and Thrasymachus (in Republic), through the works
of Hobbes, Adam Smith, Locke, up to twentieth-century figures including
economic theorists such as Frederich Hayek.10 Philosopher Tibor Machan
has offered his own detailed historical and analytic account, alongside a
defense of his preferred form of individualism.11 One theater of intellectual
reflection and contestation regarding individualism has been the “libertarian
versus communitarian” debates of the latter part of the twentieth century,
featuring such eminences as Nozick, Taylor, Sandel, Bellah, and MacIntyre.
Still another anthropological counterproposal set forth in opposition to
individualism has been “personalism,” championed in a variety of forms by
such diverse thinkers as Emmanuel Mounier, Gabriel Marcel, Max Scheler,
Paul Ricoeur, Martin Buber, Robert Spaemann, and Pope John Paul II.
It is far beyond the scope of this book to wade into this rich, dense, and
fascinating thicket of debates. It will thus eschew the embrace of any of the
panoply of isms that populate the landscape of these disputes, and it will
certainly not seek to adjudicate the perennial arguments among these
learned discussants. Instead, the analytic posture of this book is inductive.
The goal is to understand and critique the regnant anthropology of
American public bioethics by analyzing the law and policy (and the
academic discourse that undergirds them) as they currently stand.
That said, the forms of individualism and expressivism described and
analyzed by certain participants in the above debates—including especially
Sandel, Taylor, and MacIntyre—are valuable for this inductive project. In
different ways, they describe a vision of human identity and flourishing that
strongly resembles the active, operative anthropology for American public
bioethics that will emerge as foundational in the chapters that follow. As
stated, this book takes no position on whether these thinkers (often referred
to—mostly by others—as “communitarians”) have accurately characterized
and successfully critiqued their opposite numbers in these theoretical
debates (often referred to by others as “individualists,” “libertarians,”
“liberals,” and the like). The particular accounts of individualism and
expressivism offered by Sandel, Taylor, MacIntyre, and others are what
come to the surface when one interrogates some of the key vital conflicts of
American public bioethics, even though these thinkers have not deployed
these concepts in their own reflections on matters of public bioethics; with
the exception of Sandel, most of these thinkers have not addressed this
domain at length. Accordingly, it is worthwhile to briefly discuss these
accounts (and critiques) of individualism and expressivism before pressing
ahead further.
INDIVIDUALISM
The term “individualism” is most often attributed to Alexis de Tocqueville
in the nineteenth century (though Israeli historian Yehoshua Arieli notes
that the word was used a few years before in both an American political
magazine and in Michel Chevalier’s Lettres sur l’Amerique du Nord).12 In
his travels in America, Tocqueville observed with distress the emergence of
a new self-understanding that drew people away from their communal ties
and sense of shared obligations into an isolated focus on a tight circle of
family, friends, and their own limited interests. Individualism did not
merely weaken the ties to the community and the sense of corporate
responsibility for others, it also led people into the view that they “owe no
man anything and hardly expect anything from anybody. They form the
habit of thinking of themselves in isolation and imagine that their whole
destiny is in their hands.”13 Tocqueville worried that this illusion of self-
sufficiency and the abstraction of the individual would even lead people to
“forget their ancestors” as well as their descendants. In the embrace of
individualism, “each man is forever thrown back upon himself alone, and
there is danger that he may be shut up in the solitude of his own heart.”14
Robert Bellah drew upon these same concerns in his analysis of
twentieth-century America. He traced the roots of the phenomenon
identified by Tocqueville to a reaction to the hierarchies and roles imposed
by monarchical, aristocratic, and feudal societies. Bellah, following many
other thinkers, pointed to the Protestant Reformation as a reflection of a
kind of incipient individualism—a rejection of the need for a mediator
between a person and his god. And, with others, Bellah argued that in the
seventeenth century, John Locke’s image of pre-political man living in a
state of nature offers an exemplar of what he calls “ontological
individualism,” namely, “a belief that the individual has a primary reality
whereas society is a second-order, derived or artificial construct.”15 Machan,
Long, and others point to Thomas Hobbes as earlier theorizing man as
naturally and fundamentally atomized and alone, fearful and driven by
desperation to survive a war of all against all. This vision of individualism
served in part as Hobbes’s rationale for the creation of a totalizing state that
provided the only certain protection from lethal private violence. It was the
sole entity capable of providing a peaceful coexistence among people.
Bellah described the individualism of Hobbes and Locke as utilitarian,
in that it was driven by the desire to maximize self-interest in light of the
hoped-for benefits (in the case of Locke) or the promise of protection from
feared threats (in the case of Hobbes) that lead people to consent to form
and join society. Tibor Machan calls Hobbes’s approach “radical
individualism,” which understands human beings as “numerical separate
bare particulars.”16 Subsequent thinkers, including Adam Smith, held that
the aggregated pursuit of individual interests can serve the good of the
general population, so long as the natural liberty of others is respected.17
However, with the advent of twentieth-century developments in
politics, economics, novel corporate forms, and modern psychology, Bellah
suggested that a new category of individualism emerged, with “the
autonomous individual” at its center, “presumed able to choose the roles he
will play and the commitments he will make, not on the basis of higher
truths” (or, one might add, lower fears), “but according to the criterion of
life-effectiveness as the individual judges it.”18 This is what he terms
“expressive individualism.”
In an influential essay entitled Atomism, Canadian philosopher Charles
Taylor described (and criticized) a vision of society, rooted in seventeenth-
century political theories such as those of Hobbes and Locke, composed of
discrete individuals seeking to fulfill individual ends. As the name
“atomism” suggests, this conception rests upon an understanding of human
nature and the human condition as reductively and relentlessly
individualistic. On Taylor’s account, it posits unconditional and inalienable
individual rights and freedoms, but no corresponding obligations or
“principle of belonging” to the community. Atomism rests on the premise
of “the self- sufficiency of man alone, or if you prefer, of the individual.”19
Atomized individualism defines human flourishing as the exercise of
the freedom of the will. Taylor suggested that the proto-Atomist Hobbes
rejected the notion of natural ends or perfections that determine in what
human flourishing consists. Instead, he defined persons fundamentally as
“agents of desire”—defined by the objects of their will: “Whatsoever is the
object of any man’s desire … that is it which he for his part calleth good.”20
Indeed, under this view, a human being’s very attachment for life is driven
by the “desire to go on being agents of desire.”21 In its modern form, Taylor
argued, atomized individualism emphasizes the freedom to “choose life
plans, to dispose of possessions, to form one’s own convictions, and within
reason to act on them, and so on.”22
In his thoughtful taxonomy and genealogy of “individualisms,”
Roderick Long likewise identified “atomistic” individualism, which he
associated with Hobbes and others, as a conception of human beings “as
radically separate selves locked in a struggle for survival or power.”23 This
individualistic vision of human identity only recognizes as binding those
moral demands that cohere with the will, interests, and preferences of the
individual. There are no “unchosen obligations” within this anthropology.
Political philosopher Michael Sandel likewise identified a conception
of the person, which he termed “the unencumbered self,” that closely
resembled the atomized individualism flagged by Taylor and others. The
occasion for Sandel’s observation was his critique of John Rawls, whose
late twentieth century political theory is arguably among the most
influential in modern American politics, law, and public policy. In his essay
entitled The Procedural Republic and the Unencumbered Self, Sandel takes
Rawls to task for building his theory of justice and political liberalism on a
vision of the person that is false and impoverished. According to Sandel,
Rawls seeks to translate and adapt the moral theory of Immanuel Kant, who
famously located the foundation of the moral law not in any discernible
natural ends or externally manifest purposes of human life, but rather from
within the human subject himself, capable of autonomous will—a “subject
of ends.” According to Kant, for the individual autonomous will that is the
source of moral principles and judgment to be truly free, it must not be
conditioned by or responsive to external influences. Thus, in Sandel’s
words, “the rational being must be made the ground for all maxims of
action.”24 In this way, the acting subject—the self—is prior to the moral
ends that he pursues.
Sandel suggested that Rawls sought to adapt this general principle,
abstracted from Kant’s complex philosophy of German Idealism, and
translated it into a form palatable to modern American political sensibilities.
Rawls posited that it was not appropriate to build a set of rules for the
community based on conceptions of normative ends or “the good.” Instead,
for a pluralistic polity whose members strongly disagree about ultimate
goals for and the meaning of life, the “right”—the operational regulative
principles of justice that govern the community—must take precedence
over and be prior to “the good.” In Rawls’s words, “We should therefore
reverse the relation between the right and the good proposed by teleological
doctrines, and view the right as prior.”25 Accordingly, Rawls argued that the
rules adopted by a polity should not be rooted in a particular vision of the
good life, but instead should merely provide background procedures and
conditions that allow individuals to pursue their own purposes and plans.
Rawls envisioned a procedural framework to provide equal liberty for all,
admitting only those inequalities that would benefit the least advantaged
members of the community.
Sandel noted that for Rawls’s procedural vision to work, the individual
self must be understood as prior to and not determined or defined by any
purposes or ends (just as “the right is prior to the good”).26 Thus, the vision
of human identity at the core of Rawls’s political philosophy was an
“unencumbered self.” According to Sandel, Rawls’s vision “ruled out
constitutive ends. No project could be so essential that turning away from it
would call into question the person I am.”27
Having separated the person from defining ends and purposes, the
essence of human identity for Rawls was not to be found in the object of
one’s choices, but rather in the capacity to choose itself. This is an
anthropology of the solitary, free, and independent choosing self. And the
realm of choice extends not only to pathways of action, but also the
construction of ultimate meaning. “Freed from the dictates of nature and the
sanction of social roles, the human subject is installed as sovereign, cast as
the only author of moral meanings there are.”28 Rawls’s person was, in
Sandel’s words, a “self-originating source of valid claims.”29
This vision of the unencumbered self for whom no external purposes or
relationships can be constitutive of identity causes severe problems for a
coherent theory of moral obligation to the community and indebtedness to
others, especially for those others to whom “more than justice is owed.”
The anthropology grounding American public bioethics is not merely
individualism, it is a relatively modern iteration of this conception of
human identity, namely, expressive individualism. This vision of
personhood understands human flourishing as the pursuit of projects of
one’s own invention and choosing—endeavors that express and define our
true selves. To more fully grasp how expressive individualism animates the
law and policy concerning bioethics in America, it is useful to turn once
again to Bellah, Taylor, and briefly to Alasdair MacIntyre.
EXPRESSIVISM
As noted above, Bellah identified “expressive individualism” as a reaction
to the more utilitarian version of individualism that placed a greater
premium on the net social goods that emerge from the aggregated pursuit of
self-interested individuals operating within a well-regulated system of laws.
By contrast, expressive individualism “holds that each person has a unique
core of feeling and intuition that should unfold or be expressed if
individuality is to be realized.”30 Bellah connects this development in self-
understanding to the Romantic literary movement of the eighteenth and
nineteenth centuries as well as the evolution of psychotherapy combined
with new managerial corporate practices and culture in the twentieth
century. He pointed to American poet Walt Whitman as a pristine
representative of expressive individualism whose “Leaves of Grass” is an
anthem of sorts. Whitman wrote “I celebrate myself / I loaf and invite my
soul” (lines 1 & 4). Whitman saw enormous promise in American freedom
and viewed its highest use as facilitating the exploration and expression of
the individual’s inner self. Bellah likewise cites the work of Emerson,
Thoreau, and Hawthorne as emphasizing the “deeper cultivation of the self”
instead of individualism as a vehicle for maximizing utilitarian ends.31
In his Journals, Ralph Waldo Emerson clearly articulates this vision of
an internally generated individual quest for self-expression:
A man contains all that is needful to his government within
himself. He is made a law unto himself.… Good or evil that can
befall him must be from himself.… There is a correspondence in
the human soul and everything that exists in the world; more
properly, everything that is known to man. Instead of studying
things without, the principles of them all may be penetrated into
within him.… The purpose of life seems to be to acquaint a man
with himself.… The highest revelation is that God is in every
man.32
In its modern form, Bellah observed that expressive individualism
reorients the moral life from honoring external normative obligations
toward the quest for self-fulfillment. Bellah worried that this, in fact, leads
to confusion and dislocation: “With the freedom to define oneself anew in a
plethora of identities has also come an attenuation of those common
understandings that enable us to recognize the virtues of the other.”33 The
freedom of the inward turn in expressive individualism, defining the self by
its ability to choose rather than the object of its choice, can be disorienting.
Charles Taylor provided a fascinating intellectual genealogy, both
literary and philosophical, that deepened and extended Bellah’s reflections.
Throughout multiple books, essays, and lectures, Taylor identified a
profound reconfiguration of human self-understanding beginning in the
eighteenth century.34 Born out of a reaction to what Taylor described as an
austere morality, in which people were obliged to behave in ways that
conformed to rigid external standards of right and wrong, a new vision of
human identity and flourishing emerged that turned inward to the interior
self as a source of meaning and guidance. French philosopher Jean-Jacques
Rousseau developed the notion of a voice of nature within—le sentiment de
l’existence—that is the true source of moral authority, rather than the
external standards set or opinions held by others. Indeed, Rousseau worried
that such dependence on the opinion of others was a primary source of
confusion and error. Taylor noted that “in this first transposition of the
morality of sentiment we’re beginning to see emerge the modern form of
individualism.”35 Taylor also drew attention to Rousseau’s innovative
conception of freedom, which though related is not identical to his
conception of the inner voice as authoritative moral source. Rousseau’s
notion of “self-determining freedom,” like the inner voice of sentiment, was
an endogenous or internally generated quality.36 In Taylor’s words, self-
determining freedom “is the idea that I’m free when I determine the
conditions of my own existence from out of myself.”37
Rousseau’s conception of an authoritative and self-defining inner voice
was developed and extended further by writers and artists of the later
eighteenth and nineteenth centuries such as Shelley, Byron, Wordsworth,
and the other Romantic poets (including also non-Romantic literary figures
such as Goethe) who rebelled against the classical emphasis on harmony,
reason, and tradition as unduly confining strictures on artistic expression.
But these artistic and literary developments added a new dimension,
namely, the notion of “originality”—“the notion that each one of us, in
listening to that voice within, is called on to lead a form of life, a way of
being human, which is peculiar to himself or herself.”38
Taylor held up German critic and writer Johann Herder (1744–1803) as
a representative proponent of this new inward-turned truth-seeking,
creativity, and originality. According to Herder, “each human being has his
own measure, as it were an accord peculiar to him of all his feelings to each
other.”39 In this way, expressivism constitutes a radical refinement to pre-
Socratic philosopher Protagoras’s assertion that “man is the measure of all
things.”40 Here, every person constitutes his own measure. From the
realization that one’s unique truth is inside—that it must be discovered by
searching the depths of one’s inner feelings, and that the truths are original
and unique to the subject—there emerges an imperative to live according to
one’s own originality. And living according to one’s originality—following
the path discovered by searching out one’s own inner depths—frequently
requires actions that conflict with the accepted standards and norms of one’s
community. This is what Taylor called the “ethic of authenticity.”41
This striving for one’s own internally generated goals and aspirations,
over and above the norms and traditions of one’s peers, is readily seen in
the literature to which Taylor alluded. Goethe’s Faust harnessed the dark
powers of Mephistopheles and black magic to pursue his passion for
Gretchen, rejecting and violating the religious standards of his community.
Tirso de Molina’s Don Juan (and later Mozart’s Don Giovanni) imposed
their wills on vulnerable others in pursuit of their own desires, against the
mores of the time. Tennyson’s Ulysses left the comfort (and boredom) of
hearth and home in Ithaca to pursue adventure and glory once again (“Made
weak by time and fate, but strong in will / To strive, to seek, to find, and not
to yield”).42 The Byronic hero Manfred failed to harness dark supernatural
powers to alleviate his own suffering at the loss of his beloved, and boldly
embraced death rather than religious redemption (“’Tis not so difficult to
die!”).43 This echoed the earlier boldness and individualism of John
Milton’s Satan from Paradise Lost, who defiantly denies his creaturely
status before God and asserted that he and his fellow fallen angels were
made by their own hands; the power they wield is their own:
That we were formd then sais thou? And the work Of secondarie
hands, by task transferd
From Father to his Son? Strange point and new! When this creation
was? Remembers thou
Thy making, while the Maker gave thee being? We know no time
when we were not as now; Know none before us, self-begot, self-
rais’d
By our own quickening power, when fatal course
Had circled his full Orbe, the birth mature Of this our native Heaven,
Etherial Sons.
Our puissance is our own, our own right hand Shall teach us highest
deeds, by proof to try Who is our equal.44
Taylor noted that this ethic and imperative of authenticity—an
individualism of self-fulfillment—not only requires searching exploration
of one’s inner sentiments for the truth unique to the subject, but also
expression of the truths discovered in this process. To realize the truth of
who we are (and to live it most fully) it is necessary to express our inner
voice and make it concrete. This is a creative act of originality that makes
manifest the unique truths about ourselves and our purpose. This, in turn,
reveals the radical individuation of human beings: we are original and
distinct, and the truth about us can only be fully known by us and revealed
through subsequent expressive actions. The complete truth about the
individual is inaccessible and opaque to others, only made available by
expression. Taylor wrote, “What the voice of nature calls us to cannot be
fully known outside of and prior to our articulation / definition of it.… If
nature is an intrinsic source, then each of us has to follow what is within;
and this may be without precedent.”45
Given its singular focus on excavating the inner depths of the self to
discover (through expression) the truth of who we are and what constitutes
our fulfillment, Taylor worried that this culture of expressive individualism
would lead to the erosion of social and familial ties, and render
unintelligible obligations to others. Even relationships of marriage and
family might be measured and embraced or abandoned strictly according to
whether and how much they contribute to one’s self-fulfillment. Taylor was
also concerned about the possibility of a thoroughgoing relativism, wherein
one does not feel authorized to criticize or even fully grasp the choices of
others. Yet, at the same time, he identified a new category of harm that
emerges in a culture of expressive individualism, namely, the failure to
receive, accept, and appreciate the expression of others’ inner depths.
Taylor wrote, “the notion that everyone has a task to become their own
person—the particular, original person that they are—complementing that is
the belief that in order to do this they need the recognition of others.”46 To
fail to recognize the expression of other selves is a violation and a harm to
them.
Taylor noted that in the second half of the twentieth century, expressive
individualism moved beyond the domain of writers and artists and was
embraced by a substantial segment of the American (and broader Western)
population at large. Sensuality and sexual fulfillment emerged in the latter
part of the twentieth century as particularly important vehicles of self-
realization. He noted the American sexual revolution and the Flower
Generation of the 1960s as illustrative in this regard.
In his groundbreaking work After Virtue, philosopher Alasdair
MacIntyre famously noticed a similar turn in modern moral philosophy, in
the popularity and embrace of the theory of “emotivism,” a philosophical
doctrine that treats statements of moral judgment as merely expressions of
the speaker’s own particular feelings of personal approval or disapproval.
For example, the expression “murder is wrong” would be read as “I
personally disapprove of murder.”47
MacIntyre likewise recognized the rise of an anthropology that closely
resembles what here is termed expressive individualism more broadly,
noting that proponents of this view declare that “I am what I myself choose
to be.”48 MacIntyre noted that as far as moral authority is concerned, “the
individual moral agent, freed from hierarchy and teleology, conceives of
himself and is conceived of by moral philosophers as sovereign.”49
THE ANTHROPOLOGY OF EXPRESSIVE INDIVIDUALISM
Aided by Bellah’s, Taylor’s, Sandel’s, and MacIntyre’s insights, the
anthropology of expressive individualism comes into sharp relief. In its
pristine form, expressive individualism takes the individual, atomized self
to be the fundamental unit of human reality. This self is not defined by its
attachments or network of relations, but rather by its capacity to choose a
future pathway that is revealed by the investigation of its own inner depths
of sentiment. No object of choice—whether property, a particular vocation,
or even the creation of a family—is definitive and constitutive of the self. In
Sandel’s words, it is an “unencumbered self.”50 Because this self is defined
by its capacity to choose, it is associated fundamentally with its will and not
its body. The individual—the person—is thus understood to be identical
with the exercise of this particular type of cognition. Therefore, expressive
individualism is inevitably dualistic—privileging the mind while
subordinating the body in defining the person.
Flourishing is achieved by turning inward to interrogate the self’s own
deepest sentiments to discern the wholly unique and original truths about its
purpose and destiny. This inner voice is morally authoritative and defines
the route forward to realizing the authentic self. The truth about the self is
thus not determined externally, and sometimes must be pursued
counterculturally, over and above the mores of one’s community. As noted
previously, in Sandel’s words, the expressive individual self is a “self-
originating source of valid claims.”51
Relatedly, as Long and Taylor point out, expressive individualism does
not recognize unchosen obligations. The self is bound only to those
commitments freely assumed. And the expressive individual self only
accepts commitments that facilitate the overarching goal of pursuing its
own, original, unique, and freely chosen quest for meaning.
This is the anthropology that will emerge from an inductive analysis of
several of the vital conflicts of American public bioethics. Before
proceeding to that analysis, however, it is important to examine some of the
general criticisms leveled against expressive individualism, as well as some
of the alternative virtues, goods, and practices that can correct the errors of
this anthropology.
FORGETTING THE BODY
What, then, is problematic about the anthropology of expressive
individualism and why might it be an ill-suited vision of human identity and
flourishing for American public bioethics? To put it most succinctly,
expressive individualism fails because it is, to borrow a phrase from
Alasdair MacIntyre, “forgetful of the body.”52 Its vision of the human
person does not reflect and thus cannot make sense of the full lived reality
of human embodiment, with all that it entails. As mentioned previously,
human beings experience themselves and one another as living bodies, not
disembodied wills.
Because human beings live and negotiate the world as bodies, they are
necessarily subject to vulnerability, dependence, and finitude common to all
living embodied beings, with all of the attendant challenges and gifts that
follow. Thus, the anthropology of the atomized, unencumbered, inward-
directed self of expressive individualism falls short because it cannot render
intelligible either the core human realities of embodiment or recognize the
unchosen debts that accrue to all human beings throughout their life spans.
An inexorable reality of embodied human life is dependence. Most
obviously, given the way human beings come into the world, from the very
beginning they depend on the beneficence and support of others for their
very lives. Among mammals, human beings in their infancy and youth have
an unusually long period of dependence for basic survival—infants and
babies require help with nutrition, hygiene, and general protection. Of
course, this dependence on others for basic needs is not merely a transient
feature limited to the beginnings of human life. There are, of course, those
who spend their entire lives in conditions of radical dependency. But
because all human beings exist as corruptible bodies, periods of serious
illness, injury, and senescence create cycles of often-profound dependency
throughout the life span for everyone. Consider, due to the very nature of
living as bodies, in MacIntyre’s words, all human beings exist on a “scale
of disability.”53
Given the role of dependence intrinsic to bodily existence, if human
beings are to flourish, they must “receive and have an expectation of
receiving the attentive care [we] need when [we are] very young, old and
ill, or injured.”54 The care that human beings need must be unconditional
and noncontingent. The weakest and most afflicted among the human
community will, of course, require the most intensive and sustained care.
The paradigm for such caregiving—upon which nearly everyone relies
in his early life—is provided by parents. MacIntyre argued that in its fullest
expression, good parental care makes the object of concern this child; the
commitment is unconditional and does not depend on the child’s
circumstances (such as disability), and the needs of the child are treated as
paramount, over and above those of the parents. MacIntyre pointed to
parents of disabled children as the pristine model of this form of care.55 The
same need for unconditional and noncontingent care arises again, of course,
as human beings move towards the end of life’s spectrum, if not before.
French philosopher Bertrand de Jouvenel similarly noticed the
universal experience of human dependency. He also noted parental love and
care are essential to development and flourishing. In his words, parents
provide a “humanized cosmos” for the growing child who is welcomed and
loved unconditionally.56
The anthropology of expressive individualism misses this basic feature
of human life because it misses its lived realty; dependence is not part of
the picture. Expressive individualism’s image of the human person is one
fully formed, at the height of his cognitive powers, turning inward to learn
the truths that, when expressed, will form his identity and shape his life’s
course. Jouvenel criticized social contract theorists for similarly forgetting
the dependence of life in its early stages of development: “These are the
views of childless men who must have forgotten their childhood.”57 Like
Milton’s Satan and fallen angels, the expressive individual self “know[s] no
time when [it was] not as now; Know none before [it], self-begot, self-
rais’d / By [its] own quickening power.”58 A purely inward-looking and
individualistic anthropology can give no intelligible or justified account of
uncompensated, unconditional, and often self-sacrificial care of others.
There is no warrant to give more than one could ever hope to receive. There
is no imperative to give to those from whom nothing will ever be repaid in
return.
The dependence of embodied human beings is not limited to relying on
others for mere biological survival. The development of the capacities
needed to negotiate and thrive in the world inexorably depend on the
support of others. As Alasdair MacIntyre observed in his book Dependent
Rational Animals, it requires the selfless and sustained work of countless
others to build an individual’s capacities for freedom and flourishing, such
as the abilities to defer gratification, to imagine and choose from alternative
futures, to obtain useful knowledge about the world, to cooperate with and
care for others, and to come to know yourself. These are the qualities
needed to become, in MacIntyre’s words, an “independent practical
reasoner.”59 Development toward this goal requires a family and a
community of persons who are willing to make the good of others their own
good. In this way, individuals can become the kind of people who are
capable of making the good of others their own. Charles Taylor noted that
even the traits required for thriving under the ambit of expressive
individualism depend on social structures and conditions that nurture the
development of such capacities.60 Indeed, even a theory of the “autonomous
self” requires a culture and civilization in which such an idea can emerge
and be transmitted.
A single-minded focus on exploring and expressing the inner depths of
the atomized self does not, within its own normative framework, include
robust categories of community and cooperation for the sake of others. This
is the grounding insight of Sandel’s critique of Rawls: “What the difference
principle requires but cannot provide is some way of identifying those
among whom assets I bear are properly regarded as common, some way of
seeing ourselves as mutually indebted and morally engaged to begin
with.”61 An unencumbered self, without constitutive ties to others, does not
recognize an imperative to share for the sake of the least advantaged when
it is not in its own interest to do so.
Even the development and knowledge of one’s own personal identity—
the touchstone of expressive individualism—requires sustained support
from others. MacIntyre argued that without a narrative context, the
individual “story telling animal” is dislocated and disoriented.62 In After
Virtue, MacIntyre elaborated: “I can only answer the question ‘What am I to
do?’ if I can answer the prior question ‘Of what story or stories do I find
myself a part?’ ”63 Who we are is rendered intelligible by the narratives that
form us—even if one chooses to rebel against the normative direction and
embedded ends of the traditions and communities that have shaped this
story. But the point is that one does not create his or her own narrative ab
initio. Self-identity is in large part shaped by the inheritances, traditions,
and cultures of others—family, community, civilization. Sandel puts it this
way: “I move in a history I neither summon nor command, which carries
consequences nonetheless for my choices and conduct.”64 And this history
is the product of generations who have come before and will be sustained
by those not yet born.
Moreover, human beings come to understand and refine their identities
in conversation with others. Taylor called this the “dialogical” character of
human life.65 We understand ourselves not only by expressing ourselves, but
by virtue of the reactions and responses of others—especially in genuine
friendship with those whose goods we share. In collaboration with and in
struggle against others, we give an account of ourselves as well as hold
others to their own accounts. This results in a process of refinement and
clarification that enhances and deepens self-understanding. Thus, the self-
expression that is key to identity and flourishing in the anthropology of
expressive individualism requires others for recognition and response. This,
too, is a form of human dependence.
The anthropology of expressive individualism is monological and
ahistorical. As MacIntyre wrote, “from the standpoint of individualism I am
what I myself choose to be … a self that can have no history.”66 The
unencumbered self is by definition incapable of constitutive relationships. It
cannot genuinely make the good of another its own good.
Moreover, its good is not fully knowable by others; it is accessible only
in full through self-interrogation and then expression. The unencumbered
self is thus consigned to profound loneliness. Sandel captured this tragic
circumstance in this arresting passage: “However much I might hope for the
good of a friend and stand ready to advance it, only the friend himself can
know what that good is.… Where deliberating about my good means no
more than attending to wants and desires given directly to my awareness, I
must do it on my own; it neither requires nor admits participation of
others.”67
It is clear that the life of embodied human beings is characterized by
vulnerability and natural limits. Dependence is a central fact of human life.
To live as a human is to incur debts—to our families and caregivers, our
friends, our communities, and our civilization. In the words of the late
British philosopher Roger Scruton:
For us humans, who enter a world marked by the joys and
sufferings of those who are making room for us, who enjoy
protection in our early years and opportunities in our maturity, the
field of obligation is wider than the field of choice. We are bound
by ties we never chose, and our world contains values and
challenges that intrude from beyond the comfortable arena of our
agreements.68
An anthropology of expressive individualism lacks the resources to
recognize, much less repay these debts. It cannot give an intelligible
account of the debt owed to those who kept us alive and taught us what we
needed to thrive in the world. It cannot explain the role played by and
obligations incurred to others whose friendship and mutual calling to
account led to the refinement and clarification of our own self-
understanding. A fortiori, as a solely inward-looking anthropology,
expressive individualism does not supply a justification for the payment of
those debts in nonreciprocal and unconditional fashion to others who have
nothing to offer us by way of recompense. It lacks a principle of belonging
or moral obligation sufficient to build a community or civilization that will
not serve one’s interests beyond this life.
The failure of expressive individualism to respond to the reality of
embodied human lives regarding their mutual dependence, integrated
constitutive goods and histories, and shared unchosen obligations to one
another is also associated with an array of social pathologies that are
concerning in themselves, but also loom large for American public
bioethics, as will be seen in the chapters that follow.
First, as Charles Taylor and Robert Bellah have observed (echoing
related concerns raised by Alexis de Tocqueville), a purely inward-directed
atomized self becomes untethered from social ties, including the most
intimate family connections. The inner depths of the self which hold the
sources of meaning and normative orientation are never fully transparent to
others, raising the specter of a thoroughgoing relativism. At the same time,
Bellah observes, the individual experiences alienation and dislocation, as he
longs for community and shared values, but is isolated and enclosed within
his own sentiments.
The conception of human relationships not as a web of mutual
indebtedness and shared concern but rather as merely instrumental and
transactional exacerbates existing inequalities and compromises the
networks of support for the weakest and most vulnerable. Jouvenel
colorfully refers to this as a “legalitarian fiction” that “results in a chartered
libertarianism for the strong.”69
The anthropology of expressive individualism, with its singular focus
on the individual self as the sole source and summit of unique meaning,
creates not only loneliness and alienation, but enhances the fear of death. In
an address to the International Academy of Philosophy in Lichtenstein in
1992, Nobel Laureate novelist, poet, historian, and Russian dissident
Aleksandr Solzhenitsyn elaborated:
Man has lost the sense of himself as a limited point in the universe,
albeit one possessed of free will. He began to deem himself the
center of his surroundings, adapting not himself to the world but
the world to himself. And then, of course, the thought of death
becomes unbearable: It is the extinction of the entire universe at a
stroke.70
This death-haunted existence looms large for the vital conflicts of
public bioethics, as will be seen in subsequent chapters.
A thoroughgoing and singular commitment to expressive individualism
may even result in a lessened commitment to human rights. In his 2016
book, What is a Human?, social scientist John Evans undertook a
fascinating empirical study of the relationship between one’s
anthropological accounts of human identity and flourishing and attitudes
toward “genocide, torture, experimenting on persons against their will,
buying body organs from poor people, committing suicide to save money
for families.”71 He found those who embraced a philosophical anthropology
that privileges the cluster of traits and qualities most connected to
expressive individualism (namely, the active cognitive capacities to invent
and pursue future-directed plans) were “less supportive of human rights.”72
Finally, the erosion of social ties noted by Bellah and Taylor (drawing
again upon Tocqueville) could have deleterious consequences for self-
government more generally. The so-called intermediate associations that
comprise “civil society” are diminished as expressive individualism
advances. People turn away from such shared enterprises, retreating into
their own narrow circle of individual concerns. Without the buffer of civil
society between the state and the individual, Bellah and his coauthors
expressed grave worries of a resulting “mass society of mutually
antagonistic individuals, easy prey to despotism.”73
Given the failure of expressive individualism to account for
fundamental realities of embodied human life, including especially its
uniquely relational and interdependent features, and the potential individual
and shared adverse social consequences that follow, what is to be done?
Here it is useful to turn again to the work of Alasdair MacIntyre for
guidance.
AN ANTHROPOLOGY OF EMBODIMENT
Because the anthropology of expressive individualism is impoverished due
to its forgetfulness—of the body, of human interdependence, of the
consequent gifts received from and debts owed to others—the development
of a fuller and truer vision of human identity and human flourishing can
only be forged by a kind of remembering. In order to develop the virtues
and practices necessary to participate and thrive in what Macintyre calls the
“networks of giving and receiving,” we must remember who we are and
how we got here.74 First, we must remember that we entered the world
profoundly weak and vulnerable, dependent upon others for our very
survival. We needed others to feed us, to protect us, to keep us clean and
warm, and to nurse us back to health when we were sick. We needed others
to teach us how to behave, the habits of forbearance and delayed
gratification, the discipline to restrain our selfish animal impulses to put
ourselves first, and the moral vision to see others as objects of respect and
concern, with goods that we share in common. We needed others to react to
our self-understanding and expression, to help us to define ourselves both in
collaboration and competition with them. We needed a family, a
community, and a civilization to transmit expectations, values, and
standards, which shaped us as we accepted or rejected these sources of
meaning in full or in part.
We need to remember the fact that even in a normal life trajectory, we
will need this care and support again, in periods of illness and senescence.
As MacIntyre writes, it matters “that those who are no longer children
recognize in children what they once were, and those who are not yet
disabled by age recognize in the old what they are moving towards
becoming and that those who are not ill or injured recognize in the ill and
injured what they often have been and will be and always may be.”75
Those who cared for us and who will care for us in our moments of
profound vulnerability, especially when we could not and will not offer
anything by way of recompense, did and will do so unconditionally and
noncontingently. Those who cared for us knew that these efforts would
likely be vastly disproportionate to any reciprocal support that might be
offered back in return in the future. They gave us care even when all we
could do was passively receive it. This was and will be the care required to
sustain and shape us, by virtue of our lives as embodied human beings.
Remembering who we are and where we came from in this way should
awaken in us a profound sense of gratitude and a sense that a fitting
response to such care is to become the kind of person who makes the goods
of others her own—to become one who cares for others without condition
or calculation. When one remembers how he came to be who he is, through
this sustaining network of unconditional care and concern, he becomes alive
to the fact that it is not possible to repay those who supported us; the only
response is to extend the same care and concern to others in need, not
because it satisfies a balanced owed, but because this is what it means to
become one who is responsive to others solely because of their needs,
without calculation or self-interest. We will be able to offer such care and
concern because in having received it, we become people capable of
extending it to others.
Within this framework, one’s gaze is not fixed, limited to her inner self
and its depths. One’s attention instead turns outward, understanding that
flourishing is becoming a participant and steward of the network of giving
and receiving that sustains life as humanly lived. This outward-facing
vision is augmented, strengthened, and sharpened by memory and moral
imagination.
What goods, virtues, and practices are necessary, then, to participate in
and contribute to the network of giving and receiving that is a response to
the interdependence of embodied human life? They are what MacIntyre has
called “the virtues of acknowledged dependence.”76 It is through the
cultivation and practice of these virtues that one becomes a person capable
of the relationships of “uncalculated giving and graceful receiving” that
characterize human flourishing.77 The virtues of uncalculated giving include
just generosity, hospitality, and “misericordia.” Just generosity is manifest
by acting in the aid of another merely on the grounds of her apparent need.
It is just in the sense that it is fitting to return what we have received, and it
is generous in the sense that is offered in genuine regard for the particular
other in need. The measure of the response owed is proportionate to that
need, and not a function of self-interest or rational calculation of likely
return to the caregiver. Hospitality is the duty to render aid to the stranger
simply because he or she is a stranger, ungrudgingly and without condition.
Misericordia is the virtue of taking on the suffering of another as your own,
which can oblige one to provide care and assistance, or if this is not
possible, to accompany the other in his or her suffering.
The principal virtue of graceful receiving is the practice of gratitude.
This is the fitting recognition and response to the care of others, past,
present, and future who support us in our dependence. Again, the fruits of
such gratitude include the desire and disposition to extend the virtues of
uncalculated giving to those in need, because they are in need.
Another good that flows from both retrospective and anticipatory
gratitude for the care and concern of others, as well as the giftedness of life
more generally, is humility. As Michael Sandel pointed out, recognition that
our life and talents are not of our own making can be a powerful
counterweight to prideful self-regard. Moreover, it can temper a disposition
toward rational mastery and a purely extractive attitude toward ourselves,
others, and the natural world. If we did not create ourselves and depend
upon others throughout our lives, the world and those in it are not simply
materials for us to rationally order, harness, and exploit for our own
projects. This “ethic of giftedness,” as Sandel called it, awakens the felt
need to share with others—including especially those who were not as
fortunate in the natural distribution of gifts and benefits.78 Embracing the
gifts of one’s life with gratitude and humility makes one especially alive to
the least advantaged who have not received the gifts they need to flourish
on their own. This might provide the principle of sharing that is missing
from an anthropology of isolated individual wills seeking to realize their
own self-invented dreams.
Moreover, gratitude and the humility that travels with it can give rise to
what Sandel (quoting theologian William F. May) calls “openness to the
unbidden.”79 This is a disposition of welcoming and hospitality towards
others in all their uniqueness and particularity, a toleration of imperfection
and difference. This is the opposite of raw choice, rational mastery, and
control. Sandel notes that this virtue is most clearly demonstrated (and
learned) in a parent’s acceptance of her child as a gift, rather than a project
or vessel into which a parent pours his own hopes and dreams. Openness to
the unbidden is closely tied to MacIntyre’s vision for “the paradigm of good
motherhood and fatherhood” which is seen most clearly and beautifully in
the parents of seriously disabled children.80
Gratitude for the gifts of others’ support and life itself is also fertile
ground for the cultivation of the sense of solidarity—extending one’s field
of concern to encompass those beyond his immediate circle of family,
friends, and community, to encompass the wider circle of humanity. It
grows from the recognition that dependence on the generosity and
uncalculated giving of others is a universal condition of human beings,
owing to their embodied existence.
Another fruit of gratitude and the acknowledgement of human
interdependence is a sense of human dignity. While “dignity” is a famously
contested concept, the sense here is one of the intrinsic equal worth of all
human beings who are alike in vulnerability, neediness, and subject to
natural limits. All human beings stand in the vast and particular networks of
giving and receiving necessary for human flourishing. All human beings are
created and embodied, unrepeatable, precious, and fundamentally equal. All
are equidistant from Pascal’s “two infinities” between which humankind is
situated.81 The equal dignity of all human beings in virtue of their humanity
becomes clear once all of the tests and standards (mostly focused on
cognition and active powers) devised by the strong to measure the ultimate
worth of the weak, according to the former’s interests, are stripped away
and abandoned.
For these fruits to grow from gratitude and the insights that follow from
it, it is necessary to cultivate and practice the virtue of truthfulness. It is
necessary to be honest with and about oneself and his nature as an
embodied and thus interdependent being. And one must be honest with
others as the dialogical nature of our shared life unfolds.
Having considered the many virtues of acknowledged dependence, it is
possible to see one overarching good under which all of these goods and
practices necessary to the flourishing of the individual and shared lives of
embodied beings might be situated. And that is the good of genuine
friendship. Just generosity, hospitality, misericordia, gratitude, humility,
openness to the unbidden, solidarity, dignity, and truthfulness, are all virtues
and goods that cohere within the concept of friendship, understood as a
relationship of persons who make one another’s goods their own.
Friendship, in this sense, is an essential good for the flourishing of
embodied beings. One is supported and sustained throughout his life by
those who make his good their own without calculation or expectation of
return. And by receiving such support, one develops into the kind of person
who can and wants to be just this sort of friend.
What kind of education of affections and inclinations is required to
sustain these goods and practices of virtues of acknowledge dependence?
To remember the body and its meaning for our lives and relationships, it is
necessary to cultivate the moral imagination. One must learn to see himself
in the dependent child, the disabled, and the elderly to remember his origins
and his future. And to feel gratitude to those who have in the past and will
in the future sustain his life and thriving. He must learn to see in those who
need aid the people who provide the opportunity for him to become a friend
through the practice of uncalculated and unconditional giving. These others
become the occasion for the practice of generosity, hospitality, misericordia,
humility, openness to the unbidden, solidarity, honesty, and respect for
dignity.
Alongside these virtues and goods, an additional corrective to the idea
of expressive individualism are practices that draw one’s gaze from inside
toward the outside. These are practices that take one outside of oneself, and
that reveal the reality of interdependence and relationality of life as
humanly lived. The paradigm for such a practice, which becomes directly
relevant to the discussions that follow about public bioethics, is parenthood.
Sandel describes parenthood as a “school of humility,” in which we ideally
accept children as gifts rather than products of rational control and place
their needs and futures above our own.82 The lived reality of dependence,
relationality, and intersubjectivity comes into sharpest relief between
parents and children. Becoming a parent makes it (sometimes painfully)
clear that one’s good is not entirely self-contained to the truth and goals
found solely by interrogating one’s inner depths.
The shift from an expressive individualist anthropology to one of
embodiment owing to parenthood can occasionally be seen in popular
culture. At the conclusion of his film Close Encounters of the Third Kind,
Steven Spielberg’s protagonist leaves his family to join the aliens on their
spacecraft to pursue his lifelong dream and obsession. In a documentary on
the making of the film, Spielberg observed that he wrote this ending before
he became a parent and “would never have made Close Encounters the way
I made it in ’77, because I have a family that I would never leave.”83
The radical reorientation of one’s perspective as a parent is not limited
to drawing his gaze outward only to his children, but it transforms how we
view all other people, within the paradigm of parent and child. In the
American sitcom “The Office,” the lead character Pam Beesley captures
this in her account of how she now views the creepy and villainous bondage
slave known as “The Gimp” in Quentin Tarantino’s dark but comic film
Pulp Fiction: “I used to watch Pulp Fiction and laugh, and now I’m like,
that poor gimp is somebody’s child!”84
Other practices that can shift the inward gaze outward include
participation in what Robert Bellah described as “communities of
memory”—associations with their own stories and traditions that “can
allow us to connect our aspirations for ourselves and those closest to us
with the aspirations of a large whole and see our own efforts as being in
part, contributions to the common good.”85
When Taylor, MacIntyre, Sandel, Bellah, and others focused their
critique of expressive individualism, primarily on the domains of academic
philosophy and the social practices of modern Western culture, they did not
focus on the institutions of the law. But as the subsequent chapters will
illustrate, expressive individualism is manifest there as well. Legal icon and
Dean of Harvard Law School Roscoe Pound (1916–1936) noted in his
magisterial work The Spirit of the Common Law that American law is
deeply animated by a conception of personhood akin to that identified by
Sandel, Taylor, and others. Indeed, Pound described American law as
“characterized by an extreme individualism,” such that “the isolated
individual is the center of many of its most significant legal doctrines,” and
features “an uncompromising insistence upon individual interests and
individual property as the focal point of jurisprudence.”86 Pound sketched
out a multilayered account of how this came to be, including the influences
of eighteenth century political theories, Puritanism, and other factors.
Harvard law professor and former U.S. Ambassador to the Holy See Mary
Ann Glendon likewise observed (and critiqued) the individualism at the
heart of much of American law which embraces as paradigmatic the “free,
self-determining, and self-sufficient individual.”87
Insights from this chapter about expressive individualism and the
anthropological “corrective” of recalling our embodiment and its meaning
will anchor the following analysis of three “vital conflicts” of American
public bioethics—the vexed legal and policy disputes over abortion,
assisted reproduction, and end-of-life matters. Expressive individualism is
the underwriting anthropology of all of these domains. Because this account
of human identity and flourishing omits the lived reality of human
embodiment, with all the consequent gifts and challenges of dependence,
vulnerability, and natural limits, it is not a suitable normative foundation for
the law and policy in this field. It cannot make sense of or respond justly or
humanely to those lives that are characterized by radical dependence, and
who are historically the victims of exploitation and abuse, such as the
victims identified by Beecher, the sharecroppers of Tuskegee, or the just-
aborted newborns discussed in the Kennedy hearings. What is needed is a
new vision and framework. In the chapters that follow I will explore how
the virtues of acknowledged dependence might be integrated into the habits
of thought and even the laws and policies of American public bioethics.
3
In Cases of Abortion
There is no more paradigmatic case in American public bioethics than Roe
v. Wade. This case emerged at the beginning of public bioethics in America
and has roiled law and politics ever since. Abortion involves complex
questions about the meaning and value of human life in its earliest stages,
questions of parenthood and procreation, the nature of killing and letting
die, the ethics of medicine, the definition of “health,” the contours of
freedom and autonomy, the demands of justice and equality, and the
concept of human dignity. It is the pristine exemplar of a “vital conflict”—a
zero sum struggle involving literal life and death decisions. All of these
questions unfold in the sui generis context of human pregnancy—a
circumstance uniting and integrating the bodies and fates of living human
beings like no other. And it remains the most bitterly contested public
question in American life.
It is also ubiquitous; the issue of abortion hovers above and lurks below
nearly every other vital conflict of public bioethics. The concepts of
privacy, liberty, equality, and dignity as articulated in American abortion
jurisprudence are raised in public matters of assisted reproduction. The
notions of personhood underpinning abortion law and policy emerge in
public conversations about the moral status of the living human embryos
that are created in in vitro fertilization and destroyed in embryonic stem cell
research. Judicial precedents of the U.S. Supreme Court on abortion have
been invoked explicitly to justify a constitutional right to assisted suicide
and euthanasia. No matter the public bioethical matter at issue, the
reasoning in abortion law and policy is invariably invoked, and the question
of how resolution of such vital conflicts might affect access to abortion is
raised. Accordingly, abortion law is the first locus of inductive inquiry
aimed at uncovering and critiquing the anthropological grounding of the
vital conflicts of American public bioethics.
Before proceeding, it is important to be clear that the inductive
analyses throughout this book focus on the law and its grounding
conception of human identity and human flourishing. It is not meant as a
diagnosis, commentary, or critique of the motives or anthropological
premises held by the people responding to the law in their individual
choices. It is not a sociological description of or normative judgment about
why people do or do not seek or perform abortions. It is, of course, relevant
to these reasons insofar as the law shapes and reflects the goods people hold
dear or the evils that they seek to avoid. But it would be a mistake to read
the discussion that follows as a direct assessment of decision-making at the
level of individual persons. In the real world, people’s reasons for action are
complicated, messy, and spring from a wide variety of sometimes
conflicting normative commitments, insofar as such choices are rooted in
careful and conscientious reflection at all. People frequently make choices
in response to intuition, social customs, internal or external circumstances,
desires, pressures, and whims. In short, the following analysis and the
conclusions that flow from it are one step removed from individual
decision-making. The discussion concerns whether the law as presently
constituted assumes a conception of persons and flourishing that captures
the fullness of embodied human life, one that remembers the body.
The framework for analysis in this chapter is the model for all that
follow. The primary question is: What vision of human identity and
flourishing anchors the relevant legal doctrines and principles of
enforcement? The law of abortion—like all law—exists to serve persons.
What, then, is its grounding vision of persons, their needs, and their nature?
As noted previously, my approach is inductive, aiming to evaluate the law
as it is, both as written and as applied. Seminal philosophical or policy
sources will be considered insofar as they illuminate the process and
substance of the law. Once the core anthropological foundation is surfaced,
it will be interrogated for its soundness and suitability to the human context
it is meant to govern. Is it a vision of personhood that takes embodiment
seriously and is thus fit for grounding law meant to protect and promote the
flourishing of beings who live, die, and encounter one another as bodies? Is
it a suitable anchoring conception of human identity for an area of law
centrally concerned with the meaning and consequences of human
embodiment, namely, vulnerability, dependence, and natural limits? Does it
allow consideration of the public questions in all their complexity? Or does
the underlying anthropological angle of vision prevent key dimensions from
being seen? If the anthropological foundation is wanting in these ways, how
can it be augmented and how might the law be improved to facilitate and
promote the goods, practices, and virtues necessary to construct and sustain
the networks of uncalculated giving and graceful receiving that are
necessary for the survival and flourishing of embodied beings?
This analysis first offers an overview of the law of abortion in America.
As will be explained, all legal and policy initiatives at the state and federal
level relating to abortion must conform to the narrow framework set forth
by the Supreme Court. Within these confined boundaries, the political
branches can regulate abortion to a limited degree, focusing mainly on
ancillary aspects of its practice. Accordingly, this section focuses its
discussion primarily on this overarching structure as set forth by the
relevant Court precedents, including the substantive and procedural
doctrine, the explicit factual and conceptual premises on which the Justices
have relied, the implicit or assumed axioms and postulates involved, the
sources of constitutional authority invoked, and the normative principles
that drive the Court’s analysis and conclusions.
This inductive analysis of the Court’s jurisprudence reveals that the
conception of human identity and human flourishing anchoring the
American law of abortion is that of expressive individualism, as described
in the previous chapter. A similar anthropological exploration of the key
seminal academic and philosophical works that reflect and inform the
Court’s decisions will offer further confirmation. I argue that because
expressive individualism is “forgetful of the body,” it cannot make sense of
or offer a fitting response to the consequences of embodiment in the context
of abortion, including matters relating to vulnerability, dependence, and
natural limits. In light of this critique, I will then reflect on how the
anthropology of American abortion law might be augmented and rendered
more human by integrating the goods, virtues, and practices needed to
support the individual and shared lives of embodied human beings.
AMERICAN ABORTION LAW
First, a descriptive account of the law of abortion in America. Because of its
unique genesis in Supreme Court jurisprudence, this is a relatively
straightforward task. The external boundaries of permissible abortion
regulation have been narrowly fixed by the Supreme Court itself since
1973. Thus, to understand the law of abortion in America at its most
fundamental level, there are six seminal sources of authority—all Supreme
Court precedents—that must be grasped. They are Roe v. Wade, Doe v.
Bolton, Planned Parenthood v. Casey, Stenberg v. Carhart (Carhart I),
Gonzales v. Carhart (Carhart II), and Whole Woman’s Health v. Hellerstedt.
Each will be taken in turn with the ultimate goal of synthesizing a view of
human identity and flourishing that animates the modern American law of
abortion.
ROE V. WADE AND DOE V. BOLTON
In January of 1973, abortion was outlawed or subject to significant
restrictions in the vast majority of U.S. states. Thirty states banned abortion
except in those instances when the mother’s life was at risk. Sixteen more
states prohibited abortion, subject to various combinations of additional
exceptions, such as when the woman’s health (physical or mental) was
endangered, cases where the pregnancy resulted from rape or incest, or
when the child would likely be born with a physical or mental disability.
Only four states took a broadly permissive approach to abortion, allowing it
for any reason until later gestational stages.1 But in the third week of that
month, in a single opinion, the United States Supreme Court swept aside all
of these laws and replaced them with a new rule and regulatory framework
of its own making, thus fanning into life what remains to this day arguably
the most controversial and bitterly contested issue in modern American law,
politics, and policy.
The case arose in Texas, brought by three parties seeking to challenge
that state’s law, which banned abortion unless the mother’s life was
endangered by the pregnancy. The parties included a doctor who sought
relief from state prosecution for performing unlawful abortions, a childless
couple advised not to have biological children who had stopped using birth
control, and “Jane Roe,” a young single woman from a difficult and
impoverished background seeking to terminate her pregnancy. Pursuant to a
1910 statute (the Three-Judge Court Act, repealed in 1976), the case was
heard by a panel of three federal trial judges in 1970. In a unanimous per
curiam opinion, the court found that the Texas law unconstitutionally
abridged the parties’ rights under the Ninth Amendment to the United State
Constitution, which provides that “the enumeration in the Constitution of
certain rights shall not be construed to deny or disparage others retained by
the people.”2
The Ninth Amendment had been widely viewed by courts and
commentators as an obscure and largely inert source of authority until 1965,
when Justice Goldberg controversially invoked it in his concurring opinion
in Griswold v. Connecticut.3 In that case, the Court struck down a law
forbidding the use of contraception by married couples. The majority
opinion written by Justice William O. Douglas famously identified an
unwritten “right to privacy” in the Constitution, implied by the concrete
language and logic of the First, Third, Fourth, and Ninth Amendments, that
extended to protect the intimacy of marital relations.4 Goldberg concurred
separately to locate the right to privacy in the Ninth and Fourteenth
Amendments.5
Despite finding the Texas law unconstitutional by extending Griswold’s
newly identified right to privacy to the context of abortion, the court
declined to enjoin its enforcement, under a doctrine of federal non-
interference (“abstention”) with state criminal prosecutions.6 But by
operation of the Three-Judge Court Act, the plaintiffs were permitted to
appeal immediately and directly to the U.S. Supreme Court without the
usual first step of seeking review of their claims in the U.S. Court of
Appeals (the intermediate appellate court in the federal system, where 99
percent of cases are finally adjudicated).7
Because of the unique procedural posture of the case, there was no
evidentiary hearing by the three-judge trial court. Instead, it was resolved
by the lower court strictly as a matter of law.8 Thus, when the case arrived
at the U.S. Supreme Court, there were no findings of fact on which the
Justices could rely. Every factual premise of the opinion in Roe v. Wade—
historical, scientific, medical, or sociological—was the product of the
Justices’ own private reflections, untested for reliability or accuracy by the
adversarial process.
The Supreme Court heard oral arguments in the case twice (owing to
Court vacancies) and issued its 7-2 opinion penned by Justice Blackmun on
January 22, 1973.9 It was a near-absolute victory for advocates of abortion
rights. Put most succinctly, the Court held that there is an unenumerated
fundamental right to privacy that included a right to abortion, arising from
the Due Process Clause of the Fourteenth Amendment (“No person shall be
deprived of life, liberty, or property without due process of law”).10
The Constitution nowhere mentions the word “privacy,” though there
are several provisions that clearly protect the good of privacy. For example,
the Fourth Amendment prohibits the government from conducting
unreasonable searches and seizures of persons and their “houses, papers,
and effects.”11 But unlike Justice Douglas, Justice Blackmun did not look to
the “penumbras formed by emanations” of these enumerated rights to
synthesize a broader right to privacy.12 Nor did he, like Justice Goldberg or
the three-judge district court below, look to the Ninth Amendment as its
source of authority. Instead, he invoked the controversial doctrine of
“substantive due process” to locate a right to privacy in the procedural
guarantees of the Fourteenth Amendment.13 The Supreme Court had
previously invoked this doctrine at the dawn of the twentieth century in a
case called Lochner v. New York to discover an unenumerated “freedom of
contract” that it relied on to strike down a state law designed to protect
laborers in bakeries from exploitation by their employers.14 The doctrine
holds that there are unstated substantive rights implied by the explicit
procedural safeguards of the Fourteenth Amendment. The challenge and
source of controversy is how such unstated rights are to be identified and
applied. Some Justices have limited the range of possible unenumerated
rights to those that are deeply rooted in the nation’s law, history, and
traditions. Others have drawn the boundary at those rights that are thought
to be “implicit in the concept of ordered liberty” and essential to any just
system of laws.15 Despite these efforts at cabining the discretion of judges
applying the doctrine of substantive due process, the theory has been
intensely and broadly criticized as unbounded and without meaningful
conceptual limiting principles. More deeply, the doctrine of substantive due
process has been criticized as presenting an irresistible temptation to
unelected and politically unaccountable federal judges to override laws duly
enacted by the political branches of government, and to replace them with
their own naked policy preferences under the false pretense of interpreting
the Constitution.
Despite these concerns, Justice Blackmun and his six colleagues on the
Court declared that the right to privacy was implicit in the Fourteenth
Amendment and included those personal rights that are “fundamental” and
“implicit in the concept of ordered liberty.”16 Citing prior Supreme Court
precedents relating to marriage, procreation, contraception, family
relationships, child-rearing, and education, Justice Blackmun sought to
articulate the contours of the “zone of privacy” shielded from state action.
He then concluded, without a great deal of argument, that the choice for
abortion should be situated within this classification of fundamental privacy
rights.17
“Fundamental Right”
What is a “fundamental right”? Once a right is declared “fundamental,” it
enjoys the strongest protection against state action available in American
constitutional law. The mechanism of this protection is the “standard of
review” applied by federal courts in evaluating state-imposed limitations on
rights deemed fundamental. To survive a challenge to restrictions of
fundamental rights, a state bears the burden of proving to the court that the
constraint serves a “compelling interest”—a term of art denoting the most
significant degree of concern a state can invoke. If the state satisfies this
requirement, it must then prove to the court that the means chosen to
vindicate this compelling interest are the “least restrictive” possible.
This standard of review is referred to as “strict scrutiny,” and in
practice nearly always results in the nullification of the challenged law by
the court. All constitutional rights deemed “fundamental” enjoy this
maximal protection by the federal courts. This is in contrast to rights
designated as mere “liberty interests.” Such liberty interests still receive
protection of the courts, but not nearly to the same degree as fundamental
rights. Instead of “strict scrutiny,” courts review state restrictions on liberty
interests under the highly deferential “rational basis” standard of evaluation.
Under “rational basis,” courts simply ask states to justify their restrictive
laws by citing a “legitimate” state interest (as opposed to a “compelling”
interest), pursued by means that are “rationally related” to that end (as
opposed to “least restrictive”). In practice, states almost always prevail
under rational basis review. Therefore, by declaring the right to abortion to
be “fundamental” (under the aegis of the unenumerated right to privacy),
the Court signaled that states would have virtually no latitude to restrict it.
It is worth pausing a moment to reflect on this. Commentators of all
ideological stripes were struck by the extension of the right to privacy to the
context of abortion. For one thing (as liberal icon Judge Henry Friendly of
the U.S. Court of Appeals for the Second Circuit had observed in a pre-Roe
opinion that was rendered moot and never published because of legislative
action by the state of New York), the practice of abortion is not “private” in
the same sense as marital intimacy, procreation, or child-rearing.18 It
involves multiple third parties—doctors, nurses, health care technicians,
and staff of what are usually for-profit outpatient clinics. Moreover,
abortion is distinguishable from the actions at the heart of the prior privacy
precedents (including Griswold) in that it involves a process aimed at the
intentional destruction of a developing human life in utero. This is,
obviously, the primary source of controversy surrounding the practice, and
the chief animating rationale for state laws restricting it.
Other commentators were (and remain) taken aback by the Court’s
discovering a right to abortion in the Fourteenth Amendment—a provision
of the Constitution ratified in 1868 in the wake of the Civil War aimed at
remediating and responding to the grave and shameful injustice of chattel
slavery. Neither the framers of the Fourteenth Amendment, the states that
ratified it, nor the American public more generally understood or intended
for the Amendment to legalize abortion. To the contrary, in the year the
Fourteenth Amendment was ratified, thirty of thirty-seven states explicitly
criminalized abortion.19 In fact, four months after ratifying the Fourteenth
Amendment, the Ohio state legislature passed a law criminalizing abortion
from the moment of conception. The rationale for the law, as reflected in a
report of the Ohio Senate Committee on Criminal Abortion, was to prevent
the intentional killing of the unborn “at any stage of its existence,” which it
equated with “child-murder.”20 There was no indication that the Ohio
legislature (nor any state legislature) believed that this law or those like it
conflicted with the Fourteenth Amendment’s promises of due process or
equal protection under law.
Thus, to find a fundamental right to abortion under the auspices of
interpreting the Fourteenth Amendment as Justice Blackmun did, it is
necessary to deploy a much more expansive, dynamic, and creative method
of constitutional construction than the more conventional and limited focus
on text, history, and American legal tradition. Many commentators
(including those who support abortion rights) have expressed the view that
Justice Blackmun’s opinion did not do the necessary work to identify,
explain, or defend such an alternative method of interpretation. This failure
of explanation and argument was particularly concerning given the dramatic
(one might even say radical, given the baselines of the day) change in the
law and culture that the decision would abruptly compel. The controversy
regarding Blackmun’s opinion was further aggravated by the fact that none
of his sociological, medical, or historical assertions were tested for accuracy
or reliability by the adversarial process afforded by the usual trial-level
evidentiary hearing. Instead, his arguments relied exclusively on appellate
materials, such as amicus briefs and law review articles authored by
individuals associated with advocacy organizations, as well as his own
research.
CONFLICTING INTERESTS AND THE TRIMESTER FRAMEWORK
Be that as it may, Justice Blackmun and his six colleagues on the Court
declared that the right to privacy announced in Griswold was broad enough
to include a right to abortion. To ground the fundamental right, he
specifically enumerated the burdens on women imposed by laws restricting
abortion.21 He first noted the possibility of medical harms associated with
an unwanted pregnancy. But his list of burdens quickly moved on from the
physical and psychic consequences of unwanted pregnancy, and expanded
to the harms to women (and others) caused by unwanted parenthood
following the child’s birth, including “a distressful life and future,” mental
and physical health “taxed by childcare,” “distress for all concerned
associated with the unwanted child,” the problem of bringing an additional
child into a family unable or unwilling to care for it, and the “stigma of
unwed motherhood.”22
Having identified the protected interests grounded in a woman’s
fundamental right of “personal privacy,” Justice Blackmun next sought to
articulate the countervailing concerns of the state in restricting the practice.
In this way, Blackmun framed the question before the Court as a conflict
between the woman and the state’s competing interests in “health and
potential life.”23 Texas bore the burden of proving that the challenged
abortion law was justified by a “compelling interest,” and that the
regulation at issue constituted the least restrictive means to this end.24 This
was the framework for “strict scrutiny”—the most exacting level of judicial
review of state action, reserved for assessing limits on constitutional rights
deemed by the Court to be “fundamental.”
Texas’s primary argument was that the protection of prenatal human
beings from lethal violence was a compelling interest sufficient to justify
restricting abortion in all cases save for where the mother’s life was
endangered. Texas (and other amici) argued further that prenatal human
beings were “persons” under the Fourteenth Amendment, thus enjoying the
protections of due process and equal protection of the law. In a brief
passage, Justice Blackmun dismissed this constitutional argument on the
grounds that while “person” was not defined by the Constitution, in the
handful of instances in which the term is used, it applies only postnatally.
He thus concluded that the term “person” in the Fourteenth Amendment
excludes human organisms in utero.25
Moving from the constitutional to the more general notion of
“personhood” as a legal concept, Justice Blackmun turned to the state’s
general interest in regulating abortion for the “health of the mother or that
of potential human life.”26 Regarding Texas’s interest in protecting prenatal
human life, Justice Blackmun observed that there is no consensus on the
moral status of the unborn, and that the Court would not seek to adjudicate
this question.27 After offering a very brief historical narrative on the debate
over “when life begins” and the moral and legal status of prenatal human
life (none of which was presented or subject to evaluation at the trial
phase), Justice Blackmun concluded that Texas was not entitled to embrace
“one theory of life,” and “override the rights of the pregnant woman that are
at stake.”28 Thus, the Court declared implicitly that the question of the
meaning and value of nascent human life was a matter for private judgment
and private ordering. In the Court’s judgment, the state’s interest in shaping
opinions about the meaning and value of human life in its earliest stages
paled in contrast to a woman’s interests in avoiding the burdens of an
unwanted pregnancy and parenthood. (This proposition would return in an
even more potent and explicit form nineteen years later in Planned
Parenthood v. Casey.)
Justice Blackmun’s evaluation of the state’s interest in preserving a
woman’s health (as weighed against her interest in choosing abortion) took
a somewhat different turn. Here, Justice Blackmun concluded that the
state’s interest might become compelling at the stage of pregnancy where
the abortion procedure would be equally or more dangerous for the woman
than continuing the pregnancy to term. Justice Blackmun asserted that it
was a matter of proven medical fact that abortions in the first trimester are
generally safer than carrying a pregnancy to term. Accordingly, he
concluded that the state does not have a compelling interest in regulating
abortion for the sake of women’s health during these first twelve weeks.
Thus, the first holding of Roe v. Wade is that the state may not limit the
right to abortion for any reason during the first trimester.29
The Court held that in the second trimester of pregnancy the state’s
interest in regulating abortion for the sake of women’s health becomes
compelling, and therefore laws that are reasonably related to this goal are
permissible. But this is the only legitimate grounds for abortion laws at this
stage of pregnancy. No other state interest (including its interest in
preserving prenatal life) is sufficiently weighty to warrant restricting access
to abortion. Therefore, the Court held that the state may not limit abortion
in the second trimester of pregnancy except for purposes of protecting
women’s health.30
As for the third trimester of pregnancy, the Court returned to the
question of the state’s interest in unborn life (referred to throughout the
opinion as “potential life”). Justice Blackmun associated this stage of
pregnancy with “viability,” namely, the presumed capability of the child in
utero for “meaningful life outside the mother’s womb.”31 The Court held
that at this gestational stage the state was free to ban abortion, so long as
any restriction made exceptions when necessary to save a woman’s life or
to preserve her health.32
Thus emerged the famous and controversial trimester framework of
Roe v. Wade. Interestingly, at no point in the briefs, oral arguments, or
proceedings in the lower court had any party argued for a shifting legal
standard according to stage of pregnancy. This was entirely an invention of
Justice Blackmun as he drafted the opinion. The elaborate and detailed
nature of the legal standard has struck many commentators as statute-like,
amplifying the critique that the Court was acting more as a political branch
of government, straying far from its limited role of judicial interpretation. It
struck many observers as implausible that the Fourteenth Amendment
required not just a right to abortion but prescribed this complex tripartite
regulatory apparatus. Others have noted that Justice Blackmun’s empirical
claim about the relative risks of abortion and pregnancy that became an
essential premise of the Court’s reasoning was never presented, discussed,
or evaluated as scientific evidence at trial. Still others on both sides of the
abortion conflict have taken issue with the notion that either a woman’s
fundamental rights or the right to life of the unborn (the same organism
throughout gestational development) should fluctuate with something as
contingent and unstable as the concept of “viability”—which is a standard
that changes with access to technology, skill of medical care, and even the
race and sex of the fetus.
In sum, Roe v. Wade held that the Due Process Clause of the Fourteenth
Amendment implied a fundamental right to privacy that includes the
freedom of a woman to seek an abortion. Any proposed state restriction
must satisfy “strict scrutiny,” meaning that the law must serve a
“compelling” interest, pursuant to the “least restrictive means.” In the first
trimester of pregnancy, there is no such state interest. In the second
trimester of pregnancy, the only compelling state interest is the preservation
of a pregnant woman’s health. In the third trimester, the state’s interest in
prenatal life is sufficiently compelling that abortion can be proscribed, so
long as the law provided an exception to preserve the life or health of the
mother.
Doe v. Bolton and the Meaning of “Health”
Other than articulating the harms to women’s well-being imposed by
abortion restrictions, the Court in Roe did not specify what constitutes
“health,” nor what types of health interests would be sufficiently weighty to
warrant an exception to a general law banning abortion in the third
trimester. For this, it is necessary to consider the most important abortion
case that most people have never heard of, decided on the same day as Roe.
That case was Doe v. Bolton.33
Doe involved a challenge to a suite of abortion regulations in Georgia.
The state law banned abortion except by licensed physicians whose “best
clinical judgment” was that the pregnancy threatened the life or health of
the mother, the “fetus would likely be born with a serious defect,” or that
the pregnancy resulted from rape.34 Moreover, the challenged regulatory
scheme required that abortions be performed only in accredited hospitals,
that the procedure be approved by a hospital staff abortion committee, and
that the abortion provider’s judgment be confirmed by two independent
physicians. Finally, the law limited abortions to Georgia residents.35
The Court struck the following down as unconstitutional: the hospital
requirement (while noting that this rule might be permissible as applied to
the second and third trimesters of pregnancy), the abortion committee
approval provision, the two-physician confirmation rule, and the residency
clause. The Court declared all of these provisions to be unduly restrictive of
the fundamental right to abortion.36
For this discussion, the most important part of the Doe opinion is the
meaning and legitimacy of the term “best medical judgment” as provided in
the statute. The plaintiffs stated that the requirement for doctors to exercise
judgment when evaluating the risks associated with carrying the pregnancy
to term was unconstitutionally vague.37 That is, they claimed that the law
did not set forth its requirements with sufficient clarity and precision to put
physicians on notice of what conduct was criminally prohibited, or to cabin
the discretion of prosecutors. The Court concluded that the phrase “best
clinical judgment” was clear enough for constitutional standards of due
process. To explain, the Court elaborated on the factors relevant to health,
to be weighed and considered by the physician in determining if the
abortion was warranted. Such factors included: “physical, emotional,
psychological, familial, and the woman’s age.” All of these factors,
according to the Court, related to the definition of “health.”38
In this way, the Court made clear what had only been implied in Roe v.
Wade, namely, that “health” is a capacious concept that incorporates all
aspects of well-being. It is not limited to physical or even psychological
health. It likewise relates to “familial” health. Perhaps this is what Justice
Blackmun had in mind in Roe, when he declared that the fundamental right
to privacy protects women from abortion limits that impose the burdens of
unchosen parenthood, such as a distressful life and future “for all
concerned” caused by the need to rear an unwanted child. By defining the
meaning of health in such a broad fashion, the Court in Doe v. Bolton
appeared to make it clear that the “health exception” that Roe mandated for
all restrictions on abortion (even post-viability) could be invoked by the
abortion provider in service of nearly any aspect of his patient’s well-being.
Critics of the opinion worried that this expansive notion of “health” could
allow any abortion provider to circumvent any limit on abortion, simply by
invoking such broadly framed interests (including “familial” concerns) to
justify the procedure. (This worry would resurface in dramatic fashion
twenty-seven years later in Stenberg v. Carhart.)
Unanswered Questions from Roe and Doe
Both the Court’s opinions in Roe and Doe leave essential questions
unaddressed, including who or what is destroyed in an abortion? Why
should the stage of development of the human organism in utero matter to
the scope of a woman’s right to bodily autonomy, self-determination, and
privacy? Why should the state be involved in this decision at all? In short,
what is the Court’s underlying normative theory justifying its decision? To
explore these questions and consider answers, it is useful to turn briefly to
highly influential contemporaneous philosophical work advocating for
abortion rights. Without invoking this body of scholarship by name, the Roe
and Doe opinions appear to echo the principles and arguments advanced
therein.
In the early 1970s several prominent philosophy journals dedicated
space to the discussion of the right to abortion. The publication of these
volumes marked the birth of “public philosophy” as a field of inquiry and
influence. In the articles therein, two primary philosophical justifications
for the right to abortion emerged that persist to this day as the fundamental
anchors of pro-choice public advocacy, deployed both singly and in
combination. First, philosophers (and advocates) ground the right to
abortion in the freedom to reject the unchosen and unwanted bodily burdens
of pregnancy. This has been called the “bodily dependence” argument for
abortion rights. The second philosophical justification for abortion rights—
termed the “personhood” argument—argues that the prenatal human
organism does not merit the legal protections against private lethal violence
owed to post-natal human beings until he or she satisfies various
predetermined criteria. Different criteria for personhood have been
proposed, including cognition, self-awareness, the capacity to have desires,
the development of a mature and familiar human morphology, and suchlike.
Until it attains the moral status of “person,” the interests of the fetus in
avoiding destruction by abortion cannot override the right of the pregnant
woman to choose the procedure. As will become evident in the discussion
that follows, the bodily dependence and personhood arguments for abortion,
while technically distinct, tend to depend on and intersect with one another,
at least implicitly.
The most famous philosophical defense of the “bodily dependence”
argument was advanced by Judith Jarvis Thomson in the first volume of the
journal Philosophy and Public Affairs (Autumn 1971).39 Her article, “A
Defense of Abortion,” is one of the most widely cited and republished
pieces in all of academic philosophy. In it, she purports to assume for the
sake of argument that the fetus is a person from the moment of conception,
and proceeds to argue for the morality (and legality) of abortion
nevertheless. (Thomson herself does not regard the fetus to be a person
early in development, but suggests, without elaborating, that “we should
probably have to agree that the fetus becomes a person well before birth.”40)
Thomson makes her argument by way of a series of colorful analogies
involving the bodily impositions of one person upon another, in an effort to
demonstrate that it is no injustice to reject such impositions, even when the
other person will die as a result. She proffers a hypothetical case in which a
woman is abducted by the “Society for Music Lovers,” who sedate her, and
surgically attach an unconscious famous violinist to her circulatory system.
She is thus conscripted into the medical care of the violinist, whose blood
her own kidneys will now clean for the nine months it takes for him to
recover. The Director of the Hospital advises her that he is sorry for this
imposition, but he cannot “unplug” her from the violinist, as this would
result in his certain death.
Thomson’s analogy is meant to appeal to the intuition that it is not
murder or the violation of the violinist’s right to life to disconnect from the
violinist, even though it is sure to cause his death. This lethal action is
justifiable because the violinist is not entitled to use the woman’s body to
survive without her consent: “[N]obody has any right to use your kidneys
unless you give him such a right.”41
Thomson deploys other similar analogies in an effort to justify
rejection of nonconsensual bodily impositions including a woman trapped
in a small house with a baby who is rapidly growing to fill the entirety of
the home’s interior, and two men fighting over a coat (belonging to one of
them) to avoid freezing to death.
Of course, these analogies appear only to relate to the circumstances of
forced impregnation, such as through rape. Thomson thus expands her
argument to the context of unwanted pregnancy arising from consensual sex
with further analogies. These involve the invasion of property interests by
individuals despite the owner’s best efforts to prevent them. A burglar who
comes into one’s home through an open window.42 “People seeds” that take
root inside one’s home despite efforts by the owner to prevent this by
installing fine mesh screens.43 In each case, Thomson seeks to elicit the
intuition that one is justified in evicting the unwanted intruder or parasite,
even if their presence follows foreseeably from some consensual action,
like leaving a window open or using potentially defective screens. These
analogies are meant to persuade the reader that a woman is similarly
justified to evict the unwanted fetus conceived due to contraceptive failure
or unprotected sex, even if such actions cause its death.
As a concise summary of her core proposition, Thomson states: “I have
been arguing that no person is morally required to make large sacrifices to
sustain the life of another who has not the right to demand them, and this
even where the sacrifices do not include life itself.”44
She dismisses the notion that one’s child has such a right to sacrificial
care and support merely by virtue of her relationship to her mother or
father. She elaborates that the only possible grounds for such an entitlement
is the consent of the mother, which cannot be assumed simply by virtue of
the relationship of parenthood. If parents “have taken all reasonable
precautions against having a child, they do not simply by virtue of their
biological relationship to the child who comes into existence have a special
responsibility for it. They may wish to assume responsibility for it, or they
may not wish to. And I am suggesting that if assuming responsibility for it
would require large sacrifices, then they may refuse.”45
Thomson concludes her essay with two clarifications. First, she
suggests that some abortions later in pregnancy may not be justifiable, if
pursued for what she regards to be frivolous reasons (she gives the example
of an abortion in the seventh month of pregnancy for the sake of a
vacation).46 Second, she distinguishes the right to abortion from the right to
ensure the demise of one’s prenatal offspring. If it is possible to terminate a
pregnancy without killing the fetus, she suggests that one should opt for this
pathway.47
At roughly the same time that Thomson published her defense of
abortion based on a woman’s freedom to reject the fetus in utero, two other
philosophers published articles defending abortion rights on “personhood”
grounds. Michael Tooley published “Abortion and Infanticide” one year
after Thomson’s piece in the second volume of the same journal,
Philosophy and Public Affairs (Autumn 1972).48 A few months later, Mary
Anne Warren published “On the Moral and Legal Status of Abortion” in
The Monist (January 1973).49 Whereas Thomson argued that abortion is a
justifiable response to evict an unwanted bodily intruder (even where such
eviction will result in her demise), Tooley and Warren both argue that the
prenatal human organism is not a “person,” and thus its interests are
subordinate to those of a woman seeking an abortion.
Tooley asserted that a living being must satisfy specific criteria to be
deemed a “person,” with the attendant rights and interests, including
especially the right to life. He begins with the proposition that a “right” is a
claim “about the prima facie obligations of other individuals to act, or
refrain from acting.”50 But the presence of a right is conditional on the
desire of the bearer of that right. Tooley puts it this way: “ ‘A has a right to
X’ is roughly synonymous with ‘If A desires X, then others are under a
prima facie obligation to refrain from actions that would deprive him of it.’
”51 Accordingly, there can be no right to life without someone capable of
having the desire for life. To have such a desire, a being must “possess the
concept of self as a continuing subject of experiences, and … believe that it
is itself such an entity.”52 In other words, only those human beings who
have self-awareness and desires have a right to life. Until and unless a
human being’s brain is sufficiently developed to support this form of
cognition, she does not have a right to life. This, according to Tooley, is the
case for the human organism at early stages of development, both in utero
and even ex utero. That is, Tooley’s definition of “person” excludes the
preborn, the newly born, as well as human beings who irreversibly lose
their capacity for self-awareness and desire formation. In other words, as
the title of his article suggests, Tooley’s principles lead to the acceptance of
infanticide. Merely having the potential for self-awareness is not sufficient
under Tooley’s approach to qualify as a “person.” (Interestingly, Tooley
criticizes Thomson both for suggesting that the fetus becomes a person at
some point before birth and for suggesting that bodily dependence alone
can warrant the right to abortion of a being that qualifies as a person.53)
In “On the Moral and Legal Status of Abortion,” Mary Anne Warren
undertakes a similar project. She begins with the observation that it is not
possible to produce a persuasive defense of the right to abortion “without
showing that a fetus is not a human being, in the morally relevant sense of
that term.”54 Contra Thomson, Warren believes that if one grants the full
moral personhood of the unborn child, it is not possible to establish
conclusively that abortion is morally permissible. Like Tooley, she rejects
Thomson’s assertion that one has the moral right to expel an innocent
person from her property (or body) when it will inexorably lead to his
death. This echoes Justice Blackmun’s statement in Roe that “if this
suggestion of personhood [within the meaning of the 14th Amendment]
could be established, the appellants’ case, of course, collapses, for the fetus’
right to life would then be guaranteed specifically by the Amendment.”55
Warren asserts that Thomson’s analogy only holds for cases of coerced
pregnancy such as rape.56 Nevertheless, Warren believes that maximal
abortion rights are justified morally and legally because the fetus is not a
person at all.
In order to make the case for abortion rights, Warren proposes that even
though the fetus is, biologically speaking, a living member of the human
species, it is not a “person” entitled to full and equal moral rights. In her
view, “it is personhood, not genetic humanity” that defines the boundaries
of the moral and legal community.57 The balance of the article is dedicated
to demonstrating that “a fetus is not a person, hence not the sort of entity to
which it is proper to ascribe full moral rights.”58
Warren believes that the criteria for personhood and the grounds for
moral rights are “perfectly obvious,” and the article represents her effort to
articulate such criteria in service of a defense of the moral and legal
permissibility of abortion.59
Warren frames the question thus: “What sort of entity, exactly, has the
inalienable right to life, liberty and the pursuit of happiness?” She then
seeks to develop a set of criteria and a rough sense of how many must be
satisfied for a being to qualify as a “person.” One who satisfies the requisite
number of criteria is a person, with human rights.
The five traits “most central to the concept of personhood” are: (1)
consciousness and the capacity to feel pain; (2) reasoning (“the developed
capacity to solve new and relatively complex problems”); (3) “self-
motivated activity”; (4) the ability to communicate information “on
indefinitely many possible topics”; and (5) “the presence of self-concepts,
and self-awareness, either individual or racial, or both.”60
Warren then seeks to discern how many of these elements must be
present for a human being to warrant the status of personhood. She suggests
that criteria (1) and (2) alone might be sufficient, and “quite probably (1)–
(3)” if “activity” includes reasoning.61 But, most importantly, she posits that
a human being that has none of these traits does not have the status of
personhood. Since the unborn child lacks all five traits, it is clear to Warren
that human beings at this stage of development cannot reasonably be
considered persons.
Warren thus observes that it is both overbroad and underinclusive to
use the classification “human being” as a proxy for personhood. By her
standard, she suggests that there are multiple types of human beings who
are not persons, including men and women who have permanently lost their
capacity for consciousness (no longer persons), “defective human beings”
who never had the capacity for consciousness (these never were and never
will be persons), and, of course, prenatal human beings in utero (not yet
persons).62 Moreover, in the future it may be discovered that intelligent
alien life forms and perhaps even self-aware robots or computers possess a
sufficient number of her criteria to count as persons.
Warren furthermore rejects the notion that as “potential persons,” the
unborn possess a right to life sufficient to outweigh a woman’s right to
abortion, since she is an actual person. Thus, Warren concludes that any
restriction on abortion (absent “any overwhelming social need for every
possible child”) violates a woman’s fundamental moral and constitutional
rights.63
Unlike Tooley, however, Warren does not appear to be willing to
embrace fully the practice of infanticide, even though her definition of
personhood would rule out not only the unborn, but also newborns (as well
as cognitively disabled children, adolescents, and adults). She resists
endorsing infanticide in part because she believes that society appears to
value the life of infants, and at the moment “can afford to provide care for
infants which are unwanted or which have special needs.”64 Moreover, “the
needless destruction of a viable infant inevitably deprives some person or
persons of a source of great pleasure and satisfaction, perhaps severely
impoverishing their lives.”65 She later points out, however, that she does not
regard the killing of newborns as murder, because of their sub-personal
status.
She likewise rejects restrictions on late term abortions, because the
prenatal human beings involved may pose a risk to the mother’s life or
health. Warren does not address those cases where late term fetuses do not
pose such a threat. But in any event, it is interesting to note that at the
extremes of her argument, to avoid fully embracing infanticide, she must
combine her argument from personhood with a discussion of the burdens of
bodily dependence.
Thomson, Tooley, and Warren represent the philosophical defenses of
abortion rights nested in arguments from bodily dependence and
personhood. While there have been many other philosophers (such as David
Boonin, Peter Singer, Alberto Giubilini, and Francesca Minerva) who have
proposed variants and refinements of these arguments, both alone and in
combination, the claims are quite similar: laws restricting abortion are
unjustifiable because they improperly interfere with a woman’s right to free
herself from the burdens of unwanted pregnancy, and / or the fetus is not a
being with the right to life sufficient to override the wishes of a woman
seeking an abortion.66
While these philosophical principles are not outright mentioned in
Justice Blackmun’s opinions in Roe and Doe, they reflect his implicit
reasoning. To justify the right to abortion (grounded in privacy), Justice
Blackmun invokes the burdens of unwanted pregnancy. He includes, of
course, the physical and emotional consequences of pregnancy, but seems
to go even further than Thomson by invoking the burdens of unwanted
parenthood—not just on the mother, but on the family and the community
into which the unwanted child comes.
According to Roe and Doe, the fundamental right to abortion emerges
from the unique bodily encumbrance that pregnancy represents, along with
the impositions of postnatal childcare. Justice Blackmun does not raise the
possibility that the woman might be obliged to endure the burdens of
unwanted pregnancy and parenthood by virtue of her relationship of
biological parenthood or the fact she is the only one capable of sustaining
the life of the fetus, at least until viability. In all these ways, Blackmun’s
opinion follows implicitly the logic of Thomson’s bodily dependence
argument for abortion rights.
Blackmun also seems to have a personhood argument for abortion in
mind as well. While he claims to be neutral and agnostic on the moral status
of the fetus, he abandons this posture when he seeks to frame the state’s
interests that conflict with those of the woman seeking an abortion. His
analysis of what the word “person” means as applied to the Due Process
(and Equal Protection) clauses of the Fourteenth Amendment or in other
areas of American law is cursory and truncated. He does not remand the
case for factfinding on this question. He thus concludes that the dispute is
between one who is without doubt both a moral and constitutional person
(the pregnant woman) and the state’s interest in protecting a constitutional
nonperson, who is defined throughout much of the opinion as “potential
life.” This “potential life” has no meaningful interests that counterbalance
those of the mother seeking an abortion until the third trimester of
pregnancy. And even then, the mother’s well-being, broadly defined to
include interests such as “familial health” and the future burdens of rearing
an unwanted child override any claim the fetus has to a right to life.
Most importantly, despite claims to neutrality, Justice Blackmun’s
opinion implicitly finds the human fetus to be sub-personal, when he
declares its moral status to be strictly a matter for private decision-making.
The Court in Roe explicitly forbade Texas from “adopting one theory of
life” in its laws on abortion.67 By contrast, after a human being is born,
private individuals in Texas are not permitted to decide by their own lights
whether she is a person under the state’s criminal statutes. One of the
hallmarks of personhood is that moral status and basic legal protections are
not contingent upon the private opinions of others. By denying the state the
capacity to extend such protected status to prenatal human beings, the Court
effectively placed them outside the boundaries of the community of
persons. This result closely tracks the reasoning of Tooley and Warren’s
defense of abortion in the name of a limited conception of “personhood.”
Application of Roe and Doe
In the nearly two decades following Roe and Doe, the Court vigorously
defended the fundamental right to abortion, and wielded the “strict
scrutiny” standard of review to nullify a wide array of state laws meant to
regulate and curtail the practice. From 1973 until 1992, under the auspices
of applying Roe and Doe, the Court invalidated laws requiring second-
trimester abortions to be performed only in hospitals, informed consent
requirements (including a regulation requiring that only doctors convey
such information), twenty-four hour waiting periods between informed
consent and the abortion procedure itself, certain recordkeeping
requirements regarding patient demographics and abortion procedures, and
even parental notification laws. The Court also struck down as
unconstitutional laws that sought to govern the determination of viability,
and laws that required the use of an abortion technique most likely to
preserve the life of the post-viable fetus. The Court nullified a law requiring
the humane and sanitary disposition of fetal remains. The Court’s persistent
interventions invalidating state laws on abortion prompted Justice White in
a 1986 dissent to complain that the Court was engaged in the “unrestrained
imposition of its own extraconstitutional value preferences.”68 Few, if any,
constraints on abortion rights were tolerated by the Court during this period.
The Anthropology of Roe and Doe
Before proceeding to consider the additional Supreme Court precedents that
combine to constitute the law of abortion in America, we must discuss the
anthropological premises that ground Roe and Doe, as written and as
applied. The image of human identity and flourishing that emerges from the
Court’s reasoning (and the philosophical discourse it reflects) is that of the
atomized individual, defined by the cognitive capacity for choice, striving
to pursue, express, and live according to those original truths discovered
from self-interrogation, unbound by unchosen obligations and relationships,
natural limits, and the concept of natural ends. In short, the law’s vision of
the person undergirding Roe and Doe is that of expressive individualism.
We see this in the language about the source and substance of the right
to abortion, the nature of prenatal human life, and the framing (and
resolution) of the problem of unwanted pregnancy and parenthood. The
overarching frame for these opinions is privacy—a good associated with
solitude and separation, often described as a “right to be left alone.” In this
case, privacy is a value that extends to the right to shed unwanted burdens
—to reject unchosen obligations to others, including those with whom one
stands in the biological relation of parent. The burdens cited by Justice
Blackmun go beyond the physical and psychological impositions of
unwanted pregnancy and extend to the encumbrances of unwanted
parenthood. In fact, the undeniable weight of these burdens is what
convinces Justice Blackmun that a pregnant woman must have the freedom
—the fundamental right—to seek relief through abortion, without serious
constraints from the state.
Just as in the anthropology of expressive individualism, in Roe and
Doe, there is no natural relationship, no claim arising from the maternal-
fetal connection or any plea of kinship that can impose an obligation on the
woman to carry her in utero offspring to term. For both Blackmun and
Thomson, the fetus has no enforceable demands on her mother for
continued life support. Rather, the fetus is an intruding stranger with no
claims of sonship or daughterhood. It is an abstraction; merely “potential
life.” The maternal-fetal relationship instead is defined by will and choice,
based on consent rather than unchosen duty. This is the case even after
viability, when an abortion can be performed in the name of health, broadly
understood to embrace all aspects of well-being, including “familial”
concerns (Doe).
Expressive individualism is also evident as an anthropological
grounding in Blackmun’s discussion of prenatal life and personhood, which
reflects, at least implicitly, the reasoning of Tooley and Warren. In Roe, the
moral status of the unborn must remain a matter of private deliberation and
judgment, according to one’s own subjective values and beliefs.
By prohibiting the state from extending the protections of personhood
to the unborn and declaring the moral status of the fetus to be a question
proper only to private reflection, Justice Blackmun implicitly decided the
matter of prenatal personhood in the negative. If the state cannot protect
unborn children as persons, and their moral status is left up to each
individual to decide, then it follows inexorably that they are not persons in
the eyes of the law.
Blackmun never explains why Texas is forbidden from treating the
matter of abortion as a highly complex, even sui generis case involving a
parent and child whose interests apparently conflict. As noted above, even
though Blackmun’s explicit arguments sound in bodily dependence, he
seems to be relying on a normative theory to justify his refusal to recognize
the legal personhood of the fetus. (To be clear, the question of legal
personhood is distinct from the narrower question of the word “person” as
used in the Fourteenth Amendment.) The most prominent theories of
personhood of the day as applied to abortion were, as noted above, well
represented by the views of Tooley and Warren.
Tooley and Warren’s conceptions of personhood only include those
capable of flourishing as dictated by expressive individualism. They both
equate the person with the exercise of the will and include in the class of
persons only those with the active capacity for self-awareness, self-
motivation, and the generation and pursuit of desires. Tooley goes so far as
to say only those capable of desire and an awareness of the self as a
continuing subject of experiences are “persons” endowed with a right to
life. Similarly, Warren privileges self-consciousness, reason, and expression
as the sine qua non of personhood. In other words, only those with the
currently active capacity to interrogate their innermost selves to discover,
express, and pursue their originality are properly members of the
community of persons, with all the attendant basic legal protections and
moral concerns. Only those currently capable of thriving when viewed
through the lens of expressive individualism are persons. Those, like the
human fetus, without such capacities do not qualify as persons.
Finally, by framing the abortion dispute as essentially a clash of raw
interests between strangers—a person and nonperson—Justice Blackmun
embraces the narrative of expressive individualism: a universe of lonely
atomized wills each seeking their own self-invented destinies, encountering
other wills as transactional collaborators or adversaries to be overcome. For
Blackmun, the interests of the fetus do not even rise to the interests of a
person, but rather a sub-personal being whose interests must necessarily
give way when they conflict with those of a bona fide person. This clash of
interests bears little relation to the reality of human procreation and
pregnancy, in which the dramatis personae include a woman and her
biological offspring literally joined in body, one inside the other, utterly
dependent on the other, with lives integrated and intertwined to a degree
like no other human relationship. They are, biologically speaking, mother
and child.
They are not homeowner and burglar, host and parasite, or violinist and
unwilling conjoined kidney donor. This is not a dispute over private
property. Moreover, there is no mere “unplugging” to undo this relationship
—modern methods of abortion involve the direct killing and removal of the
fetus through highly invasive and violent means. Blackmun’s narrative of
conflict is simplistic, foreign, and forgetful of the body.
PLANNED PARENTHOOD V. CASEY: THE MODERN RULE
By 1992, the cultural and political movement to overturn Roe v. Wade and
restore meaningful protections for prenatal human life appeared to have
achieved some of its key political aspirations. Presidents Ronald Reagan
and George H. W. Bush had made multiple appointments to the Supreme
Court thought to be hostile to Roe, namely, Justices Antonin Scalia, Sandra
Day O’Connor, Anthony Kennedy, David Souter, and Clarence Thomas.
With the original dissenters in Roe, Chief Justice William Rehnquist and
Justice Byron White, still on the Court, observers believed that Roe would
be reversed. The opportunity appeared to present itself in 1989 with the
passage of the Pennsylvania Abortion Control Act, signed into law by
Governor Bob Casey, Sr., a prominent Democrat who was famously
opposed to abortion.69
The Pennsylvania law included measures regulating the manner in
which abortion was provided, some of which had been previously struck
down by the U.S. Supreme Court as unconstitutional, including a
mandatory informed consent provision, followed by a twenty-four-hour
waiting period, a parental consent requirement (with a judicial bypass
provision for exceptional cases), a spousal consent provision (with judicial
bypass), and certain reporting requirements for facilities that provide
abortions.70
On June 29, 1992, to the great surprise of many, the Court announced
its decision (decided by a margin of 5–4) reaffirming what it termed the
“essential holding of Roe” in a joint plurality opinion written by Justices
Kennedy, O’Connor, and Souter.71 The announcement shocked pro-life and
pro-choice communities alike, to the great despair of the former and to the
elated relief of the latter. But on reading the decision closely, it quickly
became clear to both sides that despite the opinion’s claim that it had
reaffirmed Roe, American abortion jurisprudence had been formally, if not
functionally, significantly altered.
The Court shifted the normative grounding for the right to abortion
from privacy to “liberty.”72 This change closely mirrored Justice Kennedy’s
strong libertarian judicial philosophy, and the passages of the plurality
opinion expounding on the good of liberty are commonly attributed to his
authorship. The opinion renewed a commitment to substantive due process,
noting that the procedural protections of the Fourteenth Amendment
preclude certain government actions “regardless of the fairness of the
procedures used to implement them.”73 The plurality sought to articulate a
zone of liberty into which the state may not intrude, including “a person’s
most basic decisions about family and parenthood, as well as bodily
integrity.”74 The Court framed the question before it as regarding the
freedom to make choices about the meaning and value of prenatal life,
procreation, parenting, social roles, and family. “The underlying
constitutional issue is whether the State can resolve these philosophic
questions in such a definitive way that a woman lacks all choice in the
matter, except perhaps in those rare circumstances in which a pregnancy is
itself a danger to her own life or health, or is the result of rape or incest.”75
The plurality answered this question in the negative, reaffirming Roe’s
holding that these are matters for private decision-making, and thus the
state cannot impose its own normative vision. In an oft-quoted passage, the
Court wrote:
These matters, involving the most intimate and personal choices a
person may make in a lifetime, choices central to personal dignity
and autonomy, are central to the liberty protected by the
Fourteenth Amendment. At the heart of liberty is the right to
define one’s own concept of existence, of meaning, of the
universe, and of the mystery of human life. Beliefs about these
matters could not define the attributes of personhood were they
formed under compulsion of the State.76
Despite the shift from privacy to liberty, the Court emphasized the
burdens that uniquely and exclusively fall on women facing unwanted
pregnancy as a core rationale for the right to abortion. And it expressed a
concern that by enforcing one conception of fetal personhood and
pregnancy the state was trading in an outmoded “vision of the woman’s
role” in society.77 In this way, the Court’s reasoning echoed the defense of
abortion as a mechanism of liberation for women from patriarchal
structures and enforced limits on sex-roles that inhibit their capacity to
define their futures by their own lights, on an equal footing with men. The
Court put it this way: “The destiny of the woman must be shaped to a large
extent on her own conception of her spiritual imperatives and her place in
society.”78
In addition to these normative justifications for reaffirming Roe, the
plurality opinion was quite candid in its opinion that there were additional
prudential reasons that convinced the Justices not to reverse the precedent
even if they would not have voted with the majority had they been on the
Court in 1973. First, the opinion invoked the doctrine of stare decisis, a
principle of judicial prudence in common law systems that invites (though
does not require) a court to consider the practical and social consequences
of reversing a prior precedent, even though it was wrongly decided in the
first instance.79 Second, the Court invoked the need to preserve its
reputation and legitimacy as grounds for sustaining Roe, lest they be seen as
capitulating to political pressure.80
In applying the principles of stare decisis, the Court concluded that the
rule announced in Roe had not proven to be unworkable, nor had it been
eroded by subsequent legal decisions, or undermined by new factual
developments. But the plurality asserted that overturning Roe would disrupt
reliance on abortion access as a guarantor of self-definition through sexual
choices and women’s equal participation in the economic and social life of
the nation. “[F]or two decades of economic and social developments,
people have organized intimate relationships and made choices that define
their views of themselves and their places in society, in reliance on the
availability of abortion in the event that contraception should fail.”81
For all the foregoing reasons, the plurality decided to reaffirm Roe’s
“core holding,” albeit rooted in the good of liberty—the freedom of a
woman to make decisions essential for self-definition and “to retain the
ultimate control over her destiny.”82 But when the plurality finally specified
what it meant by “essential holding,” it bore only a passing resemblance to
the rule announced in Roe.
First, in Casey the Court downgraded the right to abortion from
“fundamental” to a “protected liberty interest.”83 The plurality suggested
that Roe’s approach was too demanding and did not provide sufficient
latitude for states to express their strong respect for prenatal life (from the
moment of conception) and to seek to persuade women to choose childbirth
over abortion. Accordingly, the Court replaced the nearly insurmountable
“strict scrutiny” standard of review for state limits on abortion with a new,
seemingly more lenient “undue burden” standard.
Under the new “undue burden” standard, the state was not permitted to
adopt a measure “if its purpose or effect is to place a substantial obstacle in
the path of a woman seeking an abortion before the fetus attains viability.”84
The Court did not define “undue burden” with specificity but seemed to
suggest that measures would be invalidated that prevented a woman from
making the “ultimate decision to terminate her pregnancy before
viability.”85 However, legal measures designed to persuade a woman to
choose to carry her pregnancy to term, to convey medically accurate
information, or to otherwise signal the state’s profound interest in prenatal
human life would be permissible, even if they had the incidental effect of
making abortion more difficult or expensive to obtain. After viability, the
state could regulate or proscribe abortion, so long as such laws included an
exception for the preservation of the life or health of mother. By adopting
this pre- versus post-viability framework, the plurality opinion abandoned
another key aspect of Roe, namely, the trimester framework.
While the Court’s explanation of “undue burden” was not entirely
clear, it became slightly more so as the plurality opinion applied it to the
challenged Pennsylvania law. The Court affirmed the constitutionality of all
the legal provisions at issue, save one—spousal notification. But every
other aspect of the law was upheld, including several that had been struck
down in previous Supreme Court opinions as unconstitutional under Roe.
According to the plurality, neither the informed consent requirement, the
twenty-four-hour waiting period, the parental notification provision, nor the
reporting requirements constituted “undue burdens” to women seeking
abortions in Pennsylvania. The prior Supreme Court precedents that had
invalidated similar provisions in the past were thus overruled.
At first glance, it seemed that Casey had cleared the way for much
greater regulation of abortion prior to viability than had been possible under
Roe, and perhaps its proscription after viability. But on closer examination,
the Court had left unaltered an essential element of the previous regime of
abortion jurisprudence, namely, the broad scope of “health” to encompass
all aspects of well-being (including “familial” interests) as defined in Doe v.
Bolton. By extension, the “health exception” that Casey required as an
adjunct to any limit on abortion—including after viability—appeared to
remain so broad as to swallow any state rule, so long as the abortion
provider could warrant that some aspect of the woman’s well-being would
be advanced by the procedure.
ANTHROPOLOGY OF CASEY
As was the case in Roe, the underlying assumptions regarding human
identity and thriving that emerge from the plurality’s decision in Casey
reflect the anthropology of expressive individualism. This is evident in the
opinion’s framing of the legal conflict at issue and its treatment of the
state’s interest in prenatal life. But the influence of the anthropology of
expressive individualism is most striking in the plurality’s discussion of the
normative grounding of the right to abortion, including the ostensible goods
it secures and the harms it protects against.
Just as in Roe, the Casey plurality styles the legal question at issue as
involving a conflict of interests between atomized individuals—one being a
person and the other something less than a person. There is no serious
consideration of their integrated and intertwined bodies and futures. There
is no acknowledgement of their relationship—they are treated as strangers
rather than mother and offspring. The Court’s theory of “personhood”
remains mysterious, but it is essential to the opinion (as it was in Roe) that
the moral status of prenatal life remain strictly a matter of private judgment,
to be decided by each individual according to her own values and interests.
In other words, Casey forbids the state from offering the protections to the
fetus that are afforded to a legal person, whose moral status cannot be
relegated to the domain of private opinion. Whether the developing human
organism in utero is deemed to be a nonperson because of its bodily
dependence on the mother or because it fails to meet predetermined criteria
of active capacities remains unclear. In Casey, the Court opens the door to
more state protections for prenatal life after viability, justified by its
assertion that this is the point at which “the independent existence of the
second life can in reason and all fairness be the object of state protection
that now overrides the rights of the woman.”86 But it does not explain why
this developmental moment is significant, beyond suggesting without a
developed argument that it is a “workable” line and that “a woman who
fails to act before viability has consented to the State’s intervention on
behalf of the developing child.”87 But, again, given Casey’s retention of Doe
v. Bolton’s broad conception of “health,” and, by extension, the open-ended
“health exception” that must accompany any restriction on abortion, the
Court in Casey stops far short of declaring the viable unborn human being
to be a “person” with a right to life.
In these ways, Casey follows Roe’s implicit embrace of expressive
individualism. But it goes far beyond Roe in this regard when the opinion
discusses the justification for and the nature of the right to abortion. The
opinion is a paean to liberty of a very particular sort. It is the freedom of the
unencumbered atomized will—the self-originating source of valid claims—
to define and express its originality over and above outmoded social
conventions and to pursue a destiny of its own choosing. The right to
abortion springs from the freedom “to define one’s own concept of
existence, of meaning, of the universe, and of the mystery of human life.”88
The right to abortion frees a woman to make choices based on “her own
conception of her spiritual imperatives and her place in society,” and to
break away from outmoded and repressive norms regarding appropriate
social roles.89 It is the freedom to live authentically in a way that may be
transgressive of conventional mores. And the right to abortion guarantees
the continuing freedom for women to “organize intimate relationships and
ma[ke] choices that define their views of themselves and their places in
society” in the event that efforts at birth control fail.90 In this way, the right
to abortion serves as an indispensable mechanism to allow women to pursue
the same forms of sexual expression available to men, without being
unequally burdened in charting their own destinies socially and
economically. In short, the plurality in Casey defends the right to abortion
as derived from and in service of the liberty to pursue the aspirations of
expressive individualism.
This is likewise evident in what the Casey plurality does not discuss.
There is no serious discussion of the possible meaning of the singular
bodily integration and intertwining of mother and child presented in human
pregnancy. There is no exploration of the significance of the bonds of
kinship. There is no reflection on the fact that sexual intercourse is the
means by which a new human life comes into being—emerging already
embedded in a relationship with mother, father, and family. The Court does
not consider that the womb is the locus of this event and the first place of
belonging for the unborn child. There is no wrestling with the complexity
and risks of dividing the world of living human organisms into “persons”
who bear human rights and “nonpersons” who live at the sufferance of
others, based on their interests and desires. The opinion does not grapple
with the possibility that in the networks of uncalculated giving and graceful
receiving that are required to protect and promote the flourishing of a
community of embodied beings, the vulnerability and dependence of a
woman facing an unplanned pregnancy constitutes a summons for aid that
must be answered by all those able to render it. It is a world of strife and
conflict among atomized strangers, without unchosen obligations. It is a
place where “natural givens” are not used as an aid to interpret the world of
physical reality. The opinion makes no mention of the virtues of just
generosity, hospitality, misericordia, gratitude, solidarity, openness to the
unbidden, tolerance of imperfection, or friendship. The opinion does not
serve as an aid to the moral imagination; its reasoning and logic do not
reveal the hidden faces or voices of others who have claims on us, to whom
we owe an obligation of care in proportion to their needs, regardless of how
it might benefit us in return. The opinion is, as evidenced by the foregoing,
forgetful of the body.
The foregoing analysis of American abortion jurisprudence reveals the
anthropology of expressive individualism at work. It animates and
undergirds a legal framework that reflects a fatally partial and limited vision
of human identity and flourishing. As a result, the law is not responsive to
the complexity of embodied life in its fullness, and leaves both mother and
child unprotected and exposed. But before exploring this notion further, it is
important to complete the picture of American abortion jurisprudence,
which requires a brief discussion of three more judicial precedents that
comprise the current law of abortion in the United States.
STENBERG V. CARHART (CARHART I) AND GONZALES V. CARHART (CARHART II):
THE PARTIAL BIRTH ABORTION CASES
STENBERG V. CARHART (CARHART I)
A short article by Dr. Martin Haskell entitled “Second Trimester D&X, 20
Weeks and Beyond,” published in the proceedings of a 1992 conference of
the National Abortion Federation, set off a fifteen-year firestorm of
controversy leading to nearly thirty state statutes, federal legislation
(including multiple presidential vetoes and attempted Senate overrides) and
two Supreme Court decisions.91 In this article, Haskell described, in a step-
by-step manner, a method of abortion that many found shocking and
gruesome. The procedure involves the intentional “delivery” (Haskell’s
words) of much of the fetal body—trunk and extremities—feet first into the
vagina.92 With the fetal head in the cervix, the abortion provider pierces the
skull with forceps, suctions out the skull contents, crushes the head, and the
removes the fetal remains intact. Haskell noted that he “routinely performed
this procedure on all patients 20 through 24 weeks” of gestation.93 Because
the procedure involves a process much akin to a live birth delivery and may
even involve some of the lower extremities of the living fetus becoming
visible outside of the mother’s body, opponents of the procedure describe it
as a “partial birth abortion.”
The response? As one could expect, much of the American public
reacted in horror, including many elected officials who self-identified as
pro-choice. Senator Daniel Patrick Moynihan (D-NY), himself a longtime
abortion rights supporter, famously said in response to the procedure, “It is
as close to infanticide as anything I have come upon in our judiciary.”94
Public debate ensued, with dramatic moments that included Ron
Fitzsimmons, Executive Director of the National Coalition of Abortion
Providers, admitting to an American Medical News reporter that he had
“lied through [his] teeth” on national television in a previous interview
when he asserted that such procedures were rare and only used to preserve
women’s health.95 To the contrary, he estimated that the procedure was
performed 3,000–5,000 times annually on “a healthy mother with a healthy
fetus that is 20 weeks or more along.”96
Efforts at legislation quickly followed. In the 1990s, the U.S. Congress
passed bans on the procedure on more than one occasion, but President
Clinton vetoed each effort. Nearly thirty state legislatures passed laws
banning intact dilation and extraction. It was in response to these measures
that the dispute moved into the United States courts.
The battle to ban “partial birth abortions” at the state level culminated
in 2000 with the U.S. Supreme Court decision Stenberg v. Carhart (Carhart
I), which focused on a Nebraska law that mirrored those in dozens of other
states.97
In a 5–4 decision, the Supreme Court struck down all of the challenged
laws on the grounds that they were unconstitutionally vague in describing
the prohibited procedure, and because they did not include a “health
exception,” allowing an abortion provider discretionary judgment to
perform this form of abortion.98 State legislatures had declined to include
such an exception because they maintained that there were no known actual
cases involving women with conditions that required this procedure to
preserve their physical health or life. (This argument was echoed in a 1997
letter from the American Medical Association to Congress in support of the
federal ban.99) Moreover, they worried that given the capacious nature of
“health” as defined by Doe v. Bolton, inclusion of a health exception would
be tantamount to providing what some referred to as an “abortionist’s
veto.”100 For support, they cited the public statement of late term abortion
practitioner Warren Hern, M.D., who was quoted in USA Today on May 15,
1997 as saying “I will certify that any pregnancy is a threat to a woman’s
life and could cause ‘grievous injury’ to her ‘physical health.’ ”101
Opponents of the laws countered that there may be hypothetical
medical circumstances in which the procedure might be the safest option for
women.102
Justice Breyer and four colleagues in the majority concluded that in the
face of this disagreement among distinguished experts, the Court must defer
to the “significant body of medical opinion” suggesting that in certain
circumstances this procedure might afford the safest option for patients.103
Justice O’Connor concurred separately to underscore the proposition that
post-viability restrictions must always include a health exception, as per
Casey.104 Thus, the majority struck down as unconstitutional every state law
in the nation banning so-called partial birth abortions.
Two of the three Justices from the Casey plurality joined the majority
opinion in Carhart I. However, Justice Anthony Kennedy wrote a blistering
dissent, all but accusing his Casey plurality colleagues—Justices Souter and
O’Connor—of betrayal. He had intended for Casey to be a statesmanlike
compromise on the issue of abortion, allowing states greater latitude to
regulate the practice and signal respect for prenatal human life. But in this
case, his colleagues in the majority had cast aside substantial medical
authority that this procedure was not necessary to avert any serious health
risks to a pregnant woman and deferred instead to the medical judgment of
the plaintiffs’ experts and Dr. LeRoy Carhart who admitted to using the
technique “for every patient in every procedure, regardless of indications,
after 15 weeks’ gestation.”105 Echoing prior critics of the “health exception”
jurisprudence of Roe and Doe, Justice Kennedy lamented that the inclusion
of a health exception “which depends on the appropriate medical judgment
of Dr. Carhart is no ban at all.”106 He noted that both the American Medical
Association (who had officially expressed supported for a federal ban in
1997) and the American College of Obstetricians and Gynecologists (who
opposed the ban) “could identify no circumstances under which [partial
birth abortion] would be the only option to save the life or preserve the
health of the woman.”107 He observed that “no expert called by Dr. Carhart,
and no expert testifying in favor of the procedure, had in fact performed a
partial birth abortion in his or her medical practice.”108 Regarding the
question of relative safety, he wrote that “[t]he most to be said for the D&X
is it may present an unquantified lower risk of complication for a particular
patient but that other proven safe procedures remain available even for this
patient.”109 In short, Justice Kennedy was convinced that “substantial
evidence supports Nebraska’s conclusion that its law denies no woman a
safe abortion.”110
Kennedy concluded that Nebraska’s interests in preserving the integrity
of the medical profession, preventing the coarsening of society’s moral
sense, and promoting respect for life more generally were all important
goods served by the challenged law, and that the state was well within its
discretion to accept the opinion of those substantial medical authorities who
found that there was no medical reason to include a health exception in the
law. But his arguments failed to muster five votes among his colleagues.
Until seven years later.
GONZALES V. CARHART (CARHART II)
Between 2000 and 2007 several things occurred that resulted in a
significant shift in the law regarding intact dilation and extraction abortions.
First, a president was elected who supported the proposed federal bans on
partial birth abortion that his predecessor had vetoed. Second, two new
Justices were appointed to the Court, John Roberts and Samuel Alito, the
second of whom replaced a Justice (O’Connor) who had been in the
majority in Carhart I. Third, the U.S. Congress passed the Partial Birth
Abortion Ban Act of 2003, which more carefully specified the prohibited
procedure than the state laws at issue in Carhart I.111 The law banned
abortions in which defined anatomical parts of a living fetus were
intentionally delivered outside of the woman’s body prior to “performing an
overt act that the person knows will kill the partially delivered fetus.”112 But
like the laws struck down as unconstitutional in Carhart I, the federal ban
did not include a health exception.
Nebraska abortion provider LeRoy Carhart sued again along with
plaintiffs in several other U.S. district courts including San Francisco and
New York, and the federal law was enjoined as unconstitutional, following
Carhart I. The Court granted certiorari and in a 5–4 decision authored by
Justice Kennedy affirmed the law as constitutional on its face.113
Justice Kennedy began his opinion by describing in exacting and
graphic detail how the prohibited procedure is performed, including the
testimony of a nurse witness who recounted her own adverse emotional
reaction to observing the effects of the technique on a living fetus when she
had assisted in an intact dilation and extraction abortion.
Justice Kennedy next acknowledged that some of his colleagues in the
majority (Justices Scalia and Thomas) had expressed opposition to the
reasoning and result in Planned Parenthood v. Casey, but asserted that,
rightly understood, the rule from that precedent supported affirming the
federal Partial Birth Abortion Ban Act as constitutional. Justice Kennedy’s
analysis proceeded from the assumption that Casey governed the case,
without explicitly reaffirming it. Because the law applied both pre-viability
and post-viability, the question presented was whether it constituted an
“undue burden” as defined by Casey. In noting what he took to be the
correct framework for analysis, Kennedy observed that “by common
understanding and scientific terminology, the fetus is a living organism
while within the womb, whether or not it is viable outside the womb.”114
In Kennedy’s view, Casey created sufficient latitude for state
legislatures to ban controversial abortion methods that threatened the
integrity of the medical profession, led to a diminished respect for life
generally, and a reduced valuation of the life of the unborn specifically. He
found the federal law not to be unconstitutionally vague—distinguishing it
from the state laws at issue in Carhart I (which he did not overrule, despite
the close similarities shared by the laws at issue in that case and the federal
Partial Birth Abortion Ban Act). The federal law specified precisely what
was prohibited, had a robust intent requirement for prosecution, and did not
sweep into its ambit any other more common abortion procedures used
around the same gestational stage.
Turning to the absence of the health exception, for the same reasons he
cited in his dissent in Carhart I, he found that there were several safe
alternative methods of abortion available such that the categorical ban on
intact dilation and extraction abortions did not constitute an undue burden.
One way to avoid the strictures of the ban, for example, would be to induce
fetal demise prior to delivery of any portion of the intact fetal remains.
Justice Kennedy concluded by affirming that even in areas where there is
medical uncertainty and disagreement among experts, the state and federal
governments enjoy wide discretion to enact laws.
Justice Kennedy noted that his decision did not preclude future so-
called “as-applied” challenges to the federal Partial Birth Abortion Ban
Act’s absence of a health exception, meaning cases brought by actual
patients whose health was threatened by the prohibition of the technique.
As of the time of this publication, no such claim has ever been raised, nor
have there been any reports in the media of injuries suffered as a result of
the federal Partial Birth Abortion Ban Act.
Justice Ginsburg wrote a scorching dissent, joined by three other
colleagues, that is crucial to understand not simply because it fell only one
vote shy of commanding a majority, but because it seems to represent an
important shift in the normative justification for abortion from the previous
grounds of privacy (in Roe) and liberty (in Casey). Justice Ginsburg
grounds the right to abortion in the good of equality. That is, in her dissent
she is emphatic that the right to abortion is central to a woman’s “dignity
and autonomy, her personhood and destiny … her place in society.”115 She
notes that it is an essential mechanism by which a woman can free herself
from outmoded patriarchal norms that have historically prevented women
from pursuing their economic and social ambitions on an equal footing with
men. As suggested in Casey, men are free to embrace forms of sexual
expression and behavior without the bodily burdens of unwanted
pregnancy. A right to abortion levels the playing field for women in the
event of contraceptive failure or unprotected sex. Thus, Justice Ginsburg
emphasized that challenges to restrictions on abortion are not about an
abstract commitment to privacy, but rather “center on a woman’s autonomy
to determine her life’s course, and thus to enjoy equal citizenship stature.”116
Justice Ginsburg took umbrage at Justice Kennedy’s rhetoric in the
majority decision in which he expressed worries that women might not
receive full information regarding the nature of the challenged procedure
and come to regret their abortions when these details later came to light.
Justice Kennedy was reacting to a brief filed by Sandra Cano (the plaintiff
“Mary Doe” in Doe v. Bolton who later became a pro-life advocate, as did
Norma McCorvey, the plaintiff “Jane Roe” in Roe v. Wade) signed by 180
women who reported that they were injured physically and psychologically
by their abortions.117 He opined that the federal Partial Birth Abortion Ban
Act would shape public understanding and encourage women to carry their
pregnancies to term rather than seek late term abortions. Justice Ginsburg
vigorously objected to this line of argument and condemned the notion that
a ban on the procedure was an appropriate tool toward this end. Moreover,
she argued that Justice Kennedy was indulging “ancient notions about
women’s place in the family and under the Constitution” that had long been
“discredited.”118 Justice Ginsburg was particularly critical of Justice
Kennedy’s comment that “[r]espect for life finds an ultimate expression in
the bond of love the mother has for her child.”119 She likewise objected to
his use of the phrase “abortion doctor” (which she took to be pejorative), as
well as his references to a fetus as an “unborn child” and a “baby.”120
Justice Ginsburg’s dissent in Carhart II is an excellent representative of
current thinking among abortion rights advocates, scholars, and at least four
Supreme Court Justices regarding the justification for abortion rights and
the anthropological premises that undergird it.
For nearly ten years after Carhart II, the Supreme Court was largely
dormant in its development of the jurisprudence of abortion. That all
changed in the summer of 2016 when the Court issued its most recent
decision in this perennially vexed domain.
WHOLE WOMAN’S HEALTH V. HELLERSTEDT
Forty years after the Supreme Court struck down Texas’s abortion law in
Roe v. Wade, the same state legislature passed a suite of abortion regulations
following a special session characterized by high drama, acrimony, and a
thirteen-hour filibuster that drew national attention. The law, HB-2,
contained several provisions, including a ban on abortions after twenty
weeks post-fertilization (twenty-two weeks measured from the last
menstrual period or “LMP,” the most common method for dating
pregnancies). But two provisions in particular became the basis for the
Court’s most recent pronouncement in its nearly fifty-year period of
governing the practice of abortion. First, HB-2 required physicians
providing abortions to have admitting privileges at a hospital within a
thirty-mile radius of the site of the procedure. Second, the law mandated
that abortion facilities meet the stringent requirements of “ambulatory
surgical centers,” as defined by the Texas Health and Safety Code,
including operations standards, fire and safety guidelines, and physical
plant criteria. These new laws replaced previous regulations requiring
abortion providers to have a “working arrangement” with nearby hospitals
and a less exacting regime of safety and inspections. These provisions were
proposed in response to the high-profile prosecution of Dr. Kermit Gosnell
in Philadelphia, who was later convicted and sentenced to three life terms in
prison for murdering three newborns who had survived their attempted late
term abortions, and manslaughter for the death of patient Karnamaya
Mongar, who died of an overdose of sedatives in his clinic.121 Gosnell’s
clinic had operated for years without oversight despite deplorable and
unsafe conditions and illegal practices.122 Texas justified the new
regulations on the grounds that they would make abortion safer for women
and raise the quality of care at abortion facilities.
Plaintiffs immediately sued to enjoin these two provisions as
unconstitutional “undue burdens” on the right to abortion. The federal trial
court agreed, but was reversed in part by the U.S. Court of Appeals, which
found that the plaintiffs had failed to demonstrate that the challenged laws
imposed an unconstitutional undue burden, except as applied to one
plaintiff physician in McAllen, Texas, who was the sole abortion provider
for women in the Rio Grande Valley.123
The Supreme Court granted certiorari and in June 2016, in a 5–3
decision (Justice Scalia had died earlier that year, leaving a vacancy on the
Court) struck down the laws as unconstitutional.124 In doing so, Justice
Breyer, writing for the majority, announced a new standard for determining
the constitutionality of abortion regulations aimed at promoting health and
safety. Such laws will be deemed an unconstitutional “undue burden” when
the judicial branch finds that they do not confer sufficient medical benefits
to warrant the limits on abortion access that they impose.125
Two aspects of Justice Breyer’s approach seem to stand in tension with
the Court’s prior decisions, though the Court did not overrule any earlier
precedents. First, by emphasizing the independent role of the judiciary in
evaluating the facts relevant to burdens / benefits analysis of challenged
health and safety regulations, Justice Breyer appeared to limit the authority
accorded by Carhart II to state and federal legislatures to enact laws in the
face of scientific uncertainty and divided expert authority. Second, in a very
odd passage, Breyer misstates the Casey standard altogether when he writes
that “we now use viability as the relevant point at which a State may begin
limiting women’s access to abortion for reasons unrelated to maternal
health.”126 To the contrary, both Casey and Carhart II specified that a state
may restrict abortions prior to viability in the name of a wide array of other
interests, including its desire to signal its high regard for prenatal life, to
promote respect for life generally, or to safeguard the integrity of the
medical profession, so long as such limitations do not constitute an “undue
burden.” The Federal Partial Birth Abortion Ban Act of 2003, affirmed as
constitutional, was itself a pre-viability restriction adopted to advance these
purposes; it was not enacted for the purpose of maternal health and safety.
Justice Breyer and his colleagues concluded that neither the admitting
privileges requirement nor the ambulatory surgical center standards offered
any material benefits for health and safety, but taken together would result
in a substantial burden on access in the form of massive closures of abortion
facilities across Texas. The number of facilities that could comply with both
standards totaled seven or eight. Prior to the case, there were forty abortion
clinics across Texas. The majority inferred that this reduction in available
facilities would result in increased travel time and dramatic overcrowding
of the remaining facilities.127
Justices Thomas and Alito (who was joined by Chief Justice Roberts)
filed separate dissents, objecting to the new benefits / burdens standard and
the application of the new rule in the absence of concrete evidence
regarding the causes of clinic closures and the number of women affected as
a result. Justice Thomas lamented that the new burdens-benefits standard
marked a return to Roe’s discarded strict scrutiny standard of review, as it
invited the judicial branch to conduct an independent searching
interrogation of the efficacy of challenged laws rather than simply evaluate
their burdensome effects. He criticized the majority’s “embrace of a
jurisprudence of rights-specific exceptions and balancing tests” and,
quoting a law review article by the late Justice Scalia, declared it to be “a
regrettable concession of defeat—an acknowledgment that we have passed
the point where ‘law,’ properly speaking, has any further application.”128
Justice Alito complained that the Court had failed to hold the plaintiffs
to their burden of marshalling empirical proof based on hard data, and
instead simply indulged “crude inferences” about the causes and effects of
the clinic closures.129 He noted that even if only seven or eight clinics
remained open, 95 percent of women of reproductive age in Texas would
live within 150 miles of an abortion provider. This travel distance was
deemed not to constitute an “undue burden” in Casey. He further objected
that there had been no rigorous factfinding regarding the capacity of these
remaining clinics to provide abortions to the population of women that
might seek them.
Thus, the two challenged provisions were nullified as unconstitutional,
with Justice Kennedy curiously silent, having written no concurring
opinion. He retired from the bench two years later.
THE LAW OF ABORTION IN AMERICA
These six Supreme Court precedents constitute the fundamental law
regarding abortion in the United States. A fair summary would be that a
bare majority of the Court has found a liberty interest implicit in the Due
Process Clause of the Fourteenth Amendment that includes a right to
abortion. The liberty interest becomes manifest in light of the unique
burdens of unplanned or unwanted pregnancy and parenthood that fall
exclusively on women, threatening their self-conception, self-
determination, and capacity to pursue their chosen social and economic
aspirations. To free herself from these burdens, a woman must be at liberty
first, to define the meaning and value of prenatal human life. The state is
forbidden from imposing its own judgment on this question, especially
when its law is rooted in what the Court takes to be outmoded premises
about gender and social roles. Next, the woman must be free to act on her
belief—to seek an abortion in the event of contraceptive failure or
unprotected sex.
This ultimate liberty is unfettered until fetal viability, after which an
abortion may be obtained when the provider can cite some aspect of a
woman’s well-being, broadly understood (including “familial interests”),
that would be served by the procedure. At no point prior to birth is the
human organism a legal or constitutional “person” with a right to life (its
moral status is always a matter for private judgment), but the Court has
recognized the state’s interest in what it has variously described as
“potential life,” “prenatal life,” and even an “unborn child.”
Operationally, this is translated as a judicial restraint on the state to
“unduly burden” access to abortion pre-viability (Casey), and the obligation
for the state to include a very broad “health exception” to any bans on
abortion post-viability (Casey taken together with Doe v. Bolton). Under the
U.S. Supreme Court framework, no state has ever been permitted to ban
abortion as such either pre- or post-viability. Instead, only ancillary side
constraints on the manner in which abortion is provided have been affirmed
as constitutional. Such measures include waiting periods, informed consent
provisions, parental involvement laws, and bans on particularly
controversial abortion techniques (for example, the Partial Birth Abortion
Ban Act of 2003). Abortion rights advocates strenuously object to such
laws as improper and unjustified restraints on access to abortion. Where a
state seeks to regulate abortion for the sake of women’s health and safety, it
must satisfy the Supreme Court that the purported benefits of such laws are
great enough to warrant the limits on abortion access that they impose.
There have been many recent efforts to curtail abortion both in part and
altogether by states including Texas, Missouri, Ohio, Georgia, Indiana,
Kentucky, and Alabama. These include bans after twenty weeks post-
conception (premised on the unborn child’s capacity to experience pain),
bans on “live dismemberment” of fetuses in the second trimester or later,
bans on abortions solely for purposes of genetic, racial, or sex
discrimination (for example, to prevent the birth of children with Down
Syndrome), bans on abortion after a fetal heartbeat becomes detectable, and
straightforward prohibitions on abortion except in cases where a woman’s
life or health is threatened, or in case of fetal abnormality. All laws of these
sorts have been enjoined as unconstitutional by the lower federal courts
under the Roe / Casey framework.
Yet, there is nothing in Supreme Court jurisprudence of abortion that
forbids states from actively promoting abortion rights, even after fetal
viability.
Recently, several states have moved to sweep away all preexisting
limits on the practice and to require that abortion be funded by taxpayer
dollars. New York, for example, recently passed a state law explicitly
permitting abortion as of right up to twenty-four weeks of pregnancy, in the
“absence of fetal viability,” or at any point in gestation if “necessary to
protect the patient’s life or health.”130 “Health” in this instance, is left
broadly open-ended, as the sponsors and supporters of the law regard
abortion to be a “fundamental component of a woman’s health, privacy, and
equality.”131 The New York law also repealed prior limits on abortion in
state law, including a provision that specified that abortion is only
permissible with a woman’s consent, a law allowing for charges of
manslaughter for causing a woman’s death during an abortion, and a law
requiring care for newborns who survive an attempted abortion. Other states
have followed suit.
Illinois likewise passed a law codifying abortion as a “fundamental
right,” repealing its state law banning partial birth abortions, eliminating
preexisting conscience exemptions for health care providers, requiring
abortion coverage in insurance plans, and explicitly declaring that “the
fertilized egg, embryo, or fetus does not have independent rights under the
law.”132 This last provision shows that current American abortion
jurisprudence allows a state to deny prenatal human organisms the legal
status of persons but forbids them from extending the protections of
personhood. It is, to borrow a phrase from American constitutional law, a
“one-way ratchet.”133
American abortion law under U.S. Supreme Court precedent likewise
permits state supreme courts to recognize robust rights to abortion (beyond
those identified in Roe and Casey) in construing their own states’
constitutions. A handful of state Supreme Courts have done so, most
following the same reasoning as Roe and Casey. Most recently, the Supreme
Court of Kansas declared that there is a right to abortion under that state’s
constitutional guarantee that “all men are possessed of the equal and
inalienable natural rights, among which are life, liberty, and the pursuit of
happiness.”134 The case, Hodes & Nauser MDs v. Schmidt, involved a
challenge to a Kansas state law that banned “dismemberment abortions,”
defined as “knowingly dismembering a living unborn child and extracting
such unborn child one piece at a time from the uterus.…”135 The majority
opinion included an extended exegesis of the scope of “natural rights,”
drawing upon a variety of classical sources of political theory, including the
thought of John Locke.
Locke, the Court observed, wrote that “every Man has a Property in his
own Person.”136 It concluded that “at the heart of a natural rights philosophy
is the principle that individuals should be free to make choices about how to
conduct their own lives, or, in other words, to exercise personal
autonomy.”137 The Court extended this conception of bodily autonomy to
include a fundamental right to abortion, adopted a strict scrutiny standard of
review for state limits on the right, and struck the law down as
unconstitutionally burdensome.
Since Hellerstedt, there has been a significant change in the Court’s
composition, with two Republican appointees, Justices Neil Gorsuch and
Brett Kavanaugh, assuming the seats vacated by Justices Antonin Scalia
and Anthony Kennedy, respectively. It is possible that Justice Kavanaugh
disagrees with his predecessor (for whom he clerked) regarding the
existence and scope of a right to abortion under the U.S. Constitution, and
the application of principles of stare decisis to the Court’s abortion
precedents. If this is so, and four other Justices concur, then perhaps the
Court will overturn the Roe / Casey line of cases and return the regulation
of abortion to the political branches of the states and federal government.
This possibility may be what has motivated state legislatures such as New
York and Illinois and courts such as the Kansas Supreme Court to
proactively ensure that their state laws protect abortion access. Perhaps this
is also the reason that states such as Alabama, Missouri, Kentucky, Georgia,
Indiana, and Ohio have passed laws that appear designed to call the
question of Roe and Casey’s continuing vitality. Only time will tell.
ANTHROPOLOGY OF AMERICAN ABORTION LAW
The foregoing survey of the nearly fifty years of the Supreme Court’s
abortion jurisprudence and the legal framework that it has created reveals
that its animating foundation of human identity and flourishing is
expressive individualism. The law proceeds from the assumption that the
core unit of reality is the atomized and isolated self, lacking any unchosen
constitutive attachments, along with the obligations and benefits that might
flow from them. It reduces the person to a lonely agent of desire, defined by
the will and the capacity to make choices, whose highest thriving is self-
definition and the pursuit of economic and social aspirations.
Given these suppositions about what it means to be a person, it is not
surprising that the Court discovered a constitutional right to self-
determination—under the variable and shifting auspices of privacy, liberty,
and equality—to exercise “self-help” in the form of abortion so as to
overcome the burdens and obstacles to pursuing one’s chosen destiny,
whether they be imposed by others, the state, or perhaps even nature itself.
It is also not surprising that viewing human identity through the lens of
expressive individualism as it does, the Court excludes from the community
of legal persons those living human organisms not yet capable of actively
discerning, inventing, and pursuing the projects essential to self-definition.
To be clear, this is not simply a matter of the Court’s narrow interpretation
of the word “person” in the Fourteenth Amendment, but results from its
categorical prohibition on the state from extending the protections of any
form of legal personhood to prenatal life in the context of abortion. The
Court explicitly empowers private citizens to judge for themselves the
moral status of the unborn, without interference from the state. Which is to
say that the Court implicitly judges the human being in utero to be
something far less than a legal person for reasons that it never explains.
Finally, the anthropological assumptions of the Court obscure from
view the networks of relationships in which the parties are embedded—
relationships of family (including, but not limited to maternal-fetal
biological kinship), community, and polity—that could and should be
responsive to the basic human needs that arise from unwanted or unplanned
pregnancy. Accordingly, the narrow right the Court identifies as crucial to
human flourishing is simply the entitlement to terminate the unwanted
pregnancy and the life of the prenatal being in utero. There is a brute logic
to the recognition of this right given the Court’s background assumptions
about the nature of human life, humanly lived. In a world of atomized wills
locked in conflict with one another (and other sub-personal beings), the
right of private force is essential to preserving the fundamental right to
express one’s identity and to pursue one’s chosen destiny. And this right is
particularly weighty when balanced against the interests of nonpersons.
Viewed in this light, the Court’s rendering of the constitutional right to
abortion is best understood as the liberty to protect and vindicate the most
important goods at the heart of expressive individualism. It is the liberty to
define for oneself the meaning of procreation and prenatal life without
interference or imposition by the state, and the freedom to act on this choice
by terminating a pregnancy prior to viability as a matter of right, and even
after viability, in the name of a wide array of additional goods relating to
well-being (including “familial heath”), by operation of Doe v. Bolton’s
health exception. The right to abortion thus conceived is not simply about
responding in justice and compassion to the bodily and psychic burdens
imposed on women by unwanted pregnancy, but rather, in the Court’s
words, to protect the freedom to “organize intimate relationships and
ma[ke] choices that define [women’s] views of themselves and their places
in society.”138
I believe it is true that persons are free, particular, and individuated
beings, and that interrogating and then expressing the truths discovered in
one’s inner depths can be a fruitful and dynamic source of meaning. Indeed,
such expression can be a crucial catalyst for promoting justice and
resistance to conventional but repressive ideologies. It is true that freedom
of conscience is important to human flourishing, and that many—perhaps
most—important questions are rightly left to private judgment and private
ordering. Each person is, in deep and important ways, associated with his or
her will, judgment, rationality, and cognition. What’s more, women deserve
to be free and equal to men in the eyes of the law and should not be held
hostage to discredited patriarchal conceptions of social roles imposed by the
state, or anyone else for that matter. They should indeed be free, as the
Supreme Court has written, to shape their own destinies, in accordance with
their self-understanding and their spiritual imperatives, as they understand
them. They should be free and uncoerced in matters of procreation and
parenthood.
The problem for American abortion law is that this is not the whole
truth about human beings, and these are not the only goods at stake or evils
to be avoided in this most vexed and bitterly contested realm of public
bioethics. What is missing? A serious consideration of embodiment and its
meaning and consequences. This “forgetfulness of the body” distorts and
stunts the Court’s understanding of the full human dimensions at issue.
Specifically, the Court is blind to the reality of vulnerability, dependence,
and natural limits that necessarily attend any problem or conflict involving
embodied beings.
Because the Court fails to consider embodiment as an indispensable
aspect of human reality, it misses goods, practices, and virtues that are
essential to the thriving of the individual and shared lives of beings who
live, die, and encounter themselves and one another as bodies. Most
gravely, the Court fails to consider the networks of uncalculated giving and
graceful receiving that are necessary for the survival of embodied beings, as
well as vital to their development into the kind of people who can sustain
such life-giving networks of relationships. The virtues and practices
essential to building and maintaining these networks—generosity,
hospitality, misericordia, gratitude, humility, openness to the unbidden,
solidarity, dignity, and honesty—help one to learn how to make the good of
another one’s own good—to be a friend in the truest sense. Alongside the
development of these practices and virtues, the cultivation of moral
imagination—to see the other who has a claim on our attention and support
—and the pursuit of practices that take us “outside of ourselves” is essential
to the project of building, sustaining, and learning from these networks of
giving and receiving.
The Supreme Court jurisprudence of abortion is blind to all of this
because the law it constructs is not true to lived human reality, which
depends on unearned privileges and unchosen obligations, and is populated
by vulnerable, dependent, and disabled human beings with claims on our
care and concern by virtue of their relationship to us and not our consent.
Therefore, the Court’s prescriptive framework is gravely misguided, and
indeed, inhuman.
The primary relationship that is invisible to expressive individualism,
and by extension, the Court’s abortion jurisprudence, is that of parents and
children. Focusing as it does on the atomized individual will seeking to
express and live out its internally discovered truths in an authentic way,
expressive individualism cannot make sense of the connection between
parent and child. Parent and child are, instead, conceived as competitors
over scarce resources necessary to pursue their own individual interests.
This is precisely how the Court frames the conflict of abortion—a clash of
strangers each seeking its own advantage. Indeed, this is how it understands
human pregnancy itself.
But this description of procreation, pregnancy, and parenthood does not
do justice to the lived, embodied human reality of these experiences.139
Analogies to disputes with trespassers to property, bodily invasions by
parasites, or being kidnapped and conscripted into supporting an
unconscious violinist are not apt. Psychologist and feminist Sidney
Callahan puts it thus:
The abortion dilemma is caused by the fact that 266 days
following a conception in one body, another body will emerge.
One’s own body no longer exists as a single unit but is
engendering another organism’s life. This dynamic passage from
conception to birth is genetically ordered and universally found in
the human species. Pregnancy is not like the growth of cancer or
infestation by a biological parasite; it is the way every human
being enters the world.140
It is not simply that the womb is the locus of gestation, growth, and
birth of every human being, but in every case in which a woman seeks an
abortion, the relationship involved is, biologically speaking, that of mother
and child. They are not strangers.
But the Court’s reasoning, limited by the anthropology of expressive
individualism, misses this relationship and, in doing so, the opportunity to
reflect on the fact that the parental relationship is not the transactional
domain of consent, but is the pristine case of uncalculated giving and
graceful receiving. It is the singular experience that “takes one outside of
him or herself,” and transforms him or her from an “I” to a “we.” A child
does not and need not earn the privilege of her parent’s care. The parent
does not contract to take on such obligations. Being a parent means being
responsible for the neediness of one who is utterly dependent and
vulnerable, regardless of what one might receive in return. A parent takes
on this duty by virtue of an embodied, biological relationship. Human
beings begin their lives in utero already embedded in the relationship of
children to parents. (Of course, biological parents may discharge their
obligations by making an adoption plan, facilitating the construction of a
new family—a genuine place of belonging for the child in need, with real
and new bonds of parenthood. In adoption, as Gil Meilaender has written,
love and shared history transcend biological kinship, and create a genuine
family for all involved.141)
But despite the fact that the life in utero is a distinct living human
organism of the species homo sapiens, genetically related to the woman
seeking the abortion (in precisely the same way that all children and parents
are), the maternal-child relationship is effectively invisible in the Court’s
reasoning. The Court, following the rubrics of expressive individualism,
turns away from the embodied givens of human procreation, and treats the
unborn human being as an isolated individual. But perhaps because the
fetus cannot yet actively participate in the behaviors that expressive
individualism recognizes as proper to persons—higher cognition, self-
awareness, reflection, and expression of desires—she is relegated to the
domain of legal nonpersons, where her status is to be determined by those
who are capable of these actions.
Thus, by virtue of its embrace of expressive individualism, the Court is
not able to take full account of the biological relationship of mother and
child, nor can it even offer a description of the individual life in utero that
corresponds to lived embodied reality. The relationship is that of strangers,
and the fetus is a mere abstraction.
Similarly, the discussion of the burdens of unwanted or unplanned
pregnancy and parenthood are incomplete. Of course, these burdens are real
and can be crushing. In some cases, pregnancy can pose grave threats to a
woman’s health or even life.
Unchosen parenthood can create overwhelming stresses and burdens,
both economic and emotional. But because the Court atomizes the woman,
it both abstracts from the meaningful context of parenthood and isolates her
in her suffering, abandoning her to struggle alone as a disembodied self in a
world of contending wills, lacking any unchosen obligations or duties of
care that might be owed to her by her family, community, state, or nation.
Because it is rooted in expressive individualism, the American
jurisprudence of abortion cannot respond fully to a pregnant woman’s
dependence and vulnerability, as it ignores key avenues of aid and support
to which she is entitled as a member of the human community.
Because of its implicit embrace of expressive individualism, the Court
likewise misses the fact that parents and children are together embedded in
a wider network of others who, by virtue of their relationship as extended
family members, neighbors, fellow citizens, and polity members, owe them
obligations of just generosity, hospitality, misericordia, solidarity, honesty,
and respect for their intrinsic equal dignity. Parents and children both
depend on these networks, and through their participation in them, become
the kind of people who can contribute to their continued sustainability,
namely, the sort of people who are able to make the good of others’ their
own.
But the Court conceives of pregnancy and parenthood as a clash of
strangers, “clad in the armor of their rights” (to borrow a phrase from Carl
Schneider’s more general critique of the over-emphasis of autonomy in
bioethics).142 Thus, the Court’s chosen anthropology transforms medicine
into a tool that is wielded to eliminate unwanted burdens and the beings
whose lives are burdensome in an act of “self”-defense. In fact, by
emphasizing the sole authority of women to seek abortion in the name of
securing her future on an equal footing, the Court lends support to a man
who chooses to abandon a pregnant woman in need, since she alone decides
whether or not to carry the baby to term. In doing so, the Court embraces an
anthropology that weakens the ties between parents and children by
ignoring the biological and genetic relationship of mother (and father) and
prenatal child. It further weakens the ties of extended family, neighbors,
fellow citizens, and the government to the pregnant woman because it
isolates her in her suffering and vulnerability and ignores the obligations of
everyone to come to the aid of women and families in crisis.
Through the frame of expressive individualism, and by ignoring
embodiment and the goods, virtues, and practices necessary to responding
to its challenges, the Court is left with only one option to respond—the
freedom to use force to terminate the prenatal life that constitutes a threat to
the individual woman’s future.
PROVISIONAL WAY FORWARD: AN ANTHROPOLOGY OF HUMAN EMBODIMENT IN
ABORTION LAW AND POLICY
The Supreme Court in Roe and Casey erred by grounding the law of
abortion in an impoverished anthropology that conceals the essential reality
of the very human context it seeks to govern, and thus prevents the law
from responding to the full range of human needs at issue. Whether
constructed by the Supreme Court under the auspices of a maximally
unbounded theory of substantive due process, or established through more
conventional procedures by a state legislature or the U.S. Congress, what
would a legal framework for abortion that remembers the body look like?
Given the intricacies and complexities of making and administering
law and public policy in a federalist regime as large and diverse as the
United States, it will only be possible here to outline some broad concepts.
But as will become clear momentarily, even framed at a high level of
abstraction, the principles for the law and policy of abortion rooted in an
anthropology of human embodiment do not fit neatly within the left-right or
Republican-Democrat paradigm of modern-day America. All sides of the
current American political divide may find the following suggestions
challenging and provocative to the familiar and preferred legal and
normative categories, as expressive individualism runs deep in American
law and politics.
To start, we must remember that the law exists to protect and promote
the flourishing of persons by regulating conduct, but also to teach and shape
the public’s understanding of the demands of justice, freedom, and equality.
A legal and political regime that takes embodiment seriously would be
especially mindful of its concrete human entailments, namely, vulnerability,
dependence, and natural limits. Taking account of the “virtues of
acknowledged dependence” necessary for the survival and flourishing of
embodied human beings, law and public policy would promote the
construction and strengthening of the human networks of uncalculated
giving and graceful receiving upon which human beings depend both for
their very survival and to realize their potential.143 It would encourage and
reward the practices of just generosity, hospitality, and accompaniment of
others in suffering (misericordia). It would likewise seek to inculcate the
practices of gratitude, humility, openness to the unbidden (and tolerance of
imperfection), solidarity, truthfulness, and respect for dignity. Law and
public policy animated by an anthropology of embodiment would seek to
strengthen the familial and social ties that serve these ends, including
institutions of civil society that help to combat a purely inward-looking and
individualistic perspective and encourage a sense of belonging. Finally, the
law would serve to cultivate the moral imagination, helping persons to see
more clearly those other members of the community to whom they owe
duties of care, and of whom they can make claims of assistance for
themselves and their families.
Where incentives and inducements fall short, and people find
themselves without the support and security of the networks of giving and
receiving essential to life as humanly lived, the law must step in directly to
offer protection and render aid. This could, of course, entail a very robust
role for government.
In the context of abortion, an approach to governance grounded in an
anthropology of embodiment looks very different from the regime
established by the Court in Roe, Casey, and their judicial progeny. First, the
framing of this issue would not by styled, as under current law, as a clash of
atomized interests—a woman’s interest in defining for herself the meaning
of procreation, prenatal life, avoiding the physical and psychic burdens of
unwanted pregnancy and parenthood, and pursuing her chosen future on an
equal footing with men, versus the state’s interest in “potential life.” Rather,
it would build from the biological reality of pregnancy and parenthood,
from which several principles and points of decision would follow.
But first, why parenthood? Because an anthropology of embodiment
takes seriously the process by which human beings come to be, how they
survive and thrive, and the web of relationships in which they are embedded
as they come into the world. The Supreme Court implicitly followed Tooley
and Warren by drawing a bright line distinguishing biological genetic
humanity—living members of the species homo sapiens—from the
narrower classification of “persons.” But whereas Tooley and Warren drew
the line at the acquisition of certain cognitive capacities connected to self-
understanding and expression, the Supreme Court drew the line at birth as
the moment that the state may extend the full legal protections of
personhood to a new human life.144
A legal approach to the question of abortion grounded in the
anthropology of embodiment would be very skeptical of a framework for
the legal protection of living human beings that either depends on the
acquisition of capacities or waxes and wanes based on conditions and
degrees of dependence, or the interests and opinions of others (even those
of the human subject’s parents). The anthropology of embodiment as set
forth above regards frailty, weakness, dependence, vulnerability and even
disability as part and parcel of the human condition. It does not privilege
the capacities of cognition and will. It does not reward the powerful with
greater legal protection and withhold the benefits of the law from the weak,
because of their weakness. An anthropology of embodiment would follow
Hans Jonas’s injunction that “utter helplessness demands utter protection.”
As a matter of basic embryology, the life of the human organism begins
as a biological matter with fertilization, from which emerges a distinct, self-
directing, genetically unique embryo, which moves (if all goes well) along a
species-specific continuum of development, to fetus, newborn, adolescent,
adult, and so forth. From the beginning, the new human being is, of course,
radically dependent upon her mother to nurture and bear her in her womb.
“Personhood” theory seeks to differentiate the moral status of the organism
based on specified capacities or circumstances. Unlike expressive
individualism, which dictates that the criteria for personhood are those that
enable self-reflection, expression, and pursuit of one’s destiny according to
the endogenous truths of the inner self, an anthropology of embodiment
would regard any living member of the species homo sapiens as entitled to
the respect owed to persons, regardless of her location (in utero or ex utero),
age, size, state of dependence, active capacities for cognition or desire, her
circumstances, and perhaps most of all, regardless of the opinions of others.
In an anthropology of embodiment, there are no pre- or post-personal
human beings. Being human is the only criterion for membership in the
community of persons.145
Thus, an anthropology of embodiment would reject the Supreme
Court’s rule that in American abortion law the definition of fetal
personhood must remain relative and subjective—to be determined by
every pregnant woman for herself without imposition of the state. In this
view, all human beings are persons and must be recognized as such in the
law.
Importantly, the anthropology of embodiment does not simply regard
the fetus as just any person. She is the child of the woman seeking the
abortion. This, of course, means that the woman seeking the abortion is not
a stranger to the fetus. She is her mother. The relationship, as understood
through the anthropology of embodiment, is one of parenthood—the most
fundamental network of uncalculated giving and graceful receiving
essential to life as humanly lived. The question of abortion is thus best
understood as a matter involving a mother and her child.146
Law and policy animated by an anthropology of embodiment would
view the mother as a vulnerable, dependent member of the community, who
is entitled to the protections and support of the network of uncalculated
giving and graceful receiving that must exist for any human being to
survive and flourish. Her neediness is a summons to everyone who is able
to come to her aid and extend the same gestures of just generosity,
hospitality, and accompaniment in suffering (misericordia) on which they
have depended and from which they have benefited in their own lives as
vulnerable dependent beings. This applies with special force to the male
who is the father of the child she carries. It likewise applies to her
immediate and extended family members, her neighbors, her community,
and her polity (including the government). To be fully human—to practice
the virtues necessary to sustaining life as humanly lived—they must come
to her aid, simply by virtue of and in proportion to her neediness. This is an
unchosen obligation that binds everyone who can to respond to her
vulnerability and need. In turn, the law must encourage and reward such
care and assistance. It must create space for individuals and civil society to
respond in charity to the mother in crisis. And if there are no family
members, neighbors, or voluntary associations that come forward to help, or
they are inadequate to or unworthy of the task, then the government itself
must do so directly and indirectly.
And to be clear, these unchosen obligations do not end with the birth of
the child. The networks of uncalculated giving and graceful receiving are
necessary throughout the human life span; we all exist on a “scale of
disability” for our entire lives, so long as we are embodied. Concretely, this
means the law must facilitate and catalyze support for mothers and fathers,
their extended family, and the broader community to care for children in
difficult circumstances. Of course, sometimes parents care best for their
children by making an adoption plan, so that a genuine family might be
formed with those who do not share biological kinship but will assume the
role of parents by welcoming a child as their own.
Law and policy infused by the anthropology of embodiment would
view the living human being in utero as a child, whose dependence and
vulnerability likewise call others to render aid. The presumed incapacities
of the unborn child to actively engage in self-reflection and expression do
not disqualify her from membership in the community of persons. Nor does
her state of radical dependence. She is therefore entitled to the moral
concern and care of her parents, her extended family, and her community.
They owe to her the just generosity, hospitality, and accompaniment that
sustained them in their dependence. But the unborn child is also entitled to
recognition by the law as a person. Thus, she should be protected by the
law against the unjustified and unexcused actions of others intending to do
her harm. This is not to say, of course, that clinicians may not pursue
methods aimed to help the mother that bear significant indirect risks to the
child, including termination of the pregnancy by preterm delivery, followed
by best efforts to preserve the newborn child’s life.
In those tragic circumstances where the continued pregnancy
constitutes a grave and proportionate risk to the mother, the law should
deploy the familiar legal concepts developed to govern the use of
potentially lethal force against innocent persons who pose threats to others.
More specifically, the matter should be framed as a conflict between mother
and child. Working out how the American legal doctrines of justification,
excuse, necessity, and such related concepts as “proportionality,” “unjust
aggression,” and the like would apply to the wholly unique context of
pregnancy would require a great deal of fact-intensive analysis and
reflection to answer responsibly. Such an inquiry is beyond the scope of this
book but must be undertaken in the future to flesh out the concrete
entailments of a public bioethics rooted in an anthropology of embodiment.
The fundamental point here is that the crisis of unplanned or unwanted
pregnancy should be viewed through the normative categories of mother,
child, father, family, community, and polity (including the government).
In short, law and policy driven by the anthropology of embodiment
would respond to the question of abortion in a way that is quite distinct
from the current American abortion jurisprudence. But it is also important
to note that it is not a purely “fetus-centered framework” rooted in a desire
“to compel women who are resisting motherhood to perform the work of
bearing and rearing children,” out of fidelity to an ancient patriarchal and
repressive gender-based vision of social roles.147 It is, instead, a family and
community-centered framework, oriented toward the construction and
development of the networks of giving and receiving that are essential to
the survival and success of all human beings in their embodied vulnerability
and interdependence. This mode of law and policy embraces the humanity
of all individuals involved, understood according to their relationships to
one another in such networks. It would hold people to account to take
responsibility for one another, and in those circumstances where no such aid
is forthcoming, would step into the breach directly and provide protection
and support.
Such law and policy would also seek to make room for, encourage, and
facilitate the practice of gratitude by the beneficiaries of the sustaining
networks of care and aid, including the mothers, children, parents, and
communities whose lives are touched by unplanned and unwanted
pregnancy. The fitting response to selfless giving is graceful receiving, and
the related virtues of openness to the unbidden, tolerance of imperfection,
and humility.
How the law might be concretely designed and implemented to
facilitate the construction and tending of these networks of giving and
receiving, along with the goods, virtues, and practices necessary to sustain
them is, to be sure, a very complicated and difficult question. It involves
myriad considerations of how American law can contribute to these ends
using its numerous and fine-grained mechanisms for shaping behavior
ranging from passive suasion to direct compulsion, and many measures in
between. In broad strokes, a legal regime for abortion rooted in the
anthropology of embodiment would extend legal protections to unborn
children from the moment they are conceived, forbidding others from
intentionally harming them and providing for their care. It would, at the
same time, offer maximal support for their mothers, providing for their
health care and other needs, both during and after the pregnancy. It would
likewise incentivize family members (including the child’s father),
employers, the community, and the state to construct the vast networks of
giving and receiving required to support the flourishing of all involved. In
those rare circumstances where continued pregnancy constitutes a serious
threat to the mother, the law will draw upon existing doctrines and
principles governing circumstances where the vital interests of innocent
persons conflict, keeping in mind that this is a case involving a mother and
her child. The question of concrete implementation of such a legal
framework, and whether it operates through private ordering within the
organs of civil society or by direct governmental intervention and oversight
is for another time. It will suffice for present purposes to have articulated
the broad normative and anthropological foundation on which more
particular legal structures might be erected.
4
Assisted Reproduction
[Reproductive technologies] are means to achieve or avoid the reproductive experiences
that are central to personal conceptions of meaning and identity.
—PROF. JOHN A. ROBERTSON, Children of Choice, 4 (1994)
Reproductive medicine is helping prospective parents to realize their own dreams for a
disease free legacy.
—DR. GERALD SCHATTEN, TESTIMONY BEFORE THE PRESIDENT’S COUNCIL ON BIOETHICS (DECEMBER 13, 2002)
In 1969, British researchers Robert G. Edwards and Patrick G. Steptoe
achieved a feat that changed the world forever. As described in the Nature
article entitled “Early Stages of Fertilization in vitro of Human Oocytes
Matured in vitro,” their research team conceived a living human embryo by
combining ova and sperm in a glass dish (literally “in vitro”).1 Steptoe and
Edwards were thus able to hold and observe the human organism at the
earliest stage of development outside the body. In natural reproduction, the
embryo emerges from sperm-egg fusion in the fallopian tube but is not
detectable by modern techniques of pregnancy testing until days later.
Steptoe and Edwards were able to bring out into the light what had long
been shrouded in mystery.
Of course, there were major transformations in human procreation
before and after Edwards and Steptoe developed in vitro fertilization (IVF).
Nine years earlier the FDA’s approval of an oral contraceptive pill—Enovid
10 (known colloquially as “The Pill”)—had created the possibility of
reliably severing sexual intercourse from pregnancy.2 Four years after the
publication of their article in Nature, the Supreme Court’s decision in Roe v.
Wade recognized a constitutional right to abortion—the freedom to break
the necessary connection between pregnancy and birth.3 But IVF was
altogether different. IVF promised not only a possible avenue for infertile
people to conceive biologically-related children, it fractured almost entirely
the previously integrated component parts of human reproduction—
fertilization, gestation, and raising children. For the first time, it was
possible to create a human being whose genetic parents (providers of egg
and sperm), gestational mother, and rearing parents were five different
people, not including the practitioner and staff who prepared and cultured
the gametes and performed the fertilization itself.
In 1978, Edwards and Steptoe’s research moved from bench to bedside
with the birth in England of Louise Brown, the first “test tube baby,” as she
was described in the press.4 And, three years later, in 1981, Elizabeth Jordan
Carr became the first such baby born in America.5 Along with the relief
promised to the infertile through this revolution in medicine, IVF presented
new and radical challenges to seemingly stable conceptions—the nature and
meaning of human procreation; the identity, worth, and definitional
boundaries of human persons; the substance and contours of parenthood
and obligations to children; the fitting ends and means of biomedical
science; what it means to be a “patient”; conceptions of health and
wholeness; and norms against commodification of the body and its parts.
To date, more than one million babies conceived by IVF have been
born in the United States.6 According to the Centers for Disease Control in
2016 (the last year for which such numbers are available), 76,897 infants
were born in the United States following IVF, representing 1.9 percent of all
babies born that year (3,941,109).7 From 2007 to 2016, the number of
assisted reproductive technology (ART) cycles performed in America had
increased 39 percent.8 To be sure, these children represent the fulfilments of
the hopes and dreams of a vast array of loving parents, and relief from the
suffering caused by infertility.
But, as with all paradigm shifts in humankind’s enhanced power over
nature, there is another side to this reproductive revolution. In the United
States alone there are reports of one million human embryos frozen in
cryostorage.9 Their existence stokes a constant and growing demand for
their use and destruction in biomedical research (for example, for the
derivation and the study of human embryonic stem cells), even though
surveys have shown that the vast majority of these embryos have not been
designated for donation to researchers.10
There is a growing market for gametes, including nationwide
advertising campaigns soliciting highly intelligent, athletic, and
accomplished female college students to sell their ova, sometimes for tens
of thousands of dollars in compensation. One for-profit enterprise,
California Conceptions, procures sperm and ova and creates “batches” of
embryos which it then sells to patients for implantation (to initiate a
pregnancy) at a fraction of the cost of conventional IVF, including a money-
back guarantee.11 The firm typically conceives multiple embryos from a
single donor of ova and sells the embryonic siblings to different clients.
Prospective patients can browse the catalogue of gamete donors in the
hopes of having a baby with preferred traits. An earlier iteration of this
business model was the “Repository for Germinal Choice,” a sperm bank
that purported to make available the sperm of Nobel Prize winners and,
when that proved to be too difficult, other “Renaissance Men” of great
achievement and quality.12 Only three Nobel Laureates, including avowed
eugenicist William Shockley, actually donated sperm, but no ova were
fertilized with their seed. Most of the sperm donors, it turned out, were
perfectly ordinary people. It closed its doors in 1999.
Embryo screening for sex selection has become a common feature of
IVF practice; 73 percent of clinics in the United States offer this testing.13
There are patients who use genetic screening to identify and initiate
pregnancies with embryos who are immunocompatible to an older sibling
who needs an umbilical cord blood stem cell transplant (harvested upon
birth of the newborn). Babies born from this process are sometimes called
“savior siblings.” The Guardian has reported that an American biotech
company named “Genomic Prediction” goes beyond testing for single-gene
mutations or chromosomal abnormalities to aggregating data to develop
“polygenic risk scores” that indicate an increased probability of having a
child with a variety of health difficulties, but also tests embryos for
probable “low IQ.”14 According to the Guardian, “the company projects
that once high-quality genetic and academic achievement data from a
million individuals becomes available, expected to be within five to ten
years, it will be able to predict IQ to within about 10 points.”15
As will be developed further below, all of the foregoing is perfectly
legal and essentially unregulated beyond the usual laws governing the
practice of medicine, the use of human tissues, cells, and tissue and cell-
based products, and the general civil and criminal laws of the separate
states.
It is this second domain of public bioethics—assisted reproduction—to
which this inquiry now turns.
Whereas the public questions of abortion involve the termination of
pregnancy, the avoidance of parenthood, and the ending of nascent human
life, the domain of inquiry of this chapter—assisted reproduction—concerns
the initiation of pregnancy, the pursuit of parenthood, and the creation of
new human life. Both contexts are also distinguished by understandably
profound and overwhelming emotional counterpoints—on the one hand,
dread and panic at the prospect of the burdens and disruptions of unwanted
pregnancy and parenthood, and on the other, desperate sadness and longing
for a child of one’s own flesh. But normatively, anthropologically, and
legally speaking, these vital conflicts of American public bioethics are
deeply linked to one another. Unlike American abortion law, which is
shaped by nearly fifty years of jurisprudence, the realm of assisted
reproduction is notable for the absence of law governing it. Even though
this is the case, assisted reproduction is squarely rooted in the anthropology
of expressive individualism.
United States law defines ART as “all treatments or procedures which
include the handling of human oocytes or embryos” for the purpose of
establishing a pregnancy.16 This includes in vitro fertilization and its
variants, egg or embryo cryopreservation and donation, and gestational
surrogacy. It does not include artificial insemination (injection of sperm into
the uterus) by a donor or from a woman’s partner. For the sake of brevity,
our discussion will not engage in depth with the important questions of
determining legal parentage (which varies from state to state), insurance
coverage, the patchwork landscape of state laws governing surrogacy, and
the novel and projected techniques of ART that are on the more distant
horizon, such as deriving sperm and egg from stem cells or aborted fetuses,
artificial wombs, creation of live born animal-human hybrids or chimeras,
genetic engineering of children (for example, by cloning or gene “editing”),
or gestating babies in machines or nonhuman animal surrogates. These
important questions will be reserved for a future analysis, which will
depend, of course, on the more fundamental anthropological analysis to be
set forth in the pages that follow. The discussion here focuses primarily on
IVF and the closely-related techniques in current use.
IVF: A PRIMER
As conventionally practiced, IVF involves five steps: (i) collection and
preparation of gametes; (ii) fertilization; (iii) screening and transfer of the
resulting embryos to the gestational mother’s uterus and disposition of non-
transferred embryos, if any; (iv) pregnancy; and (v) birth. Each stage
involves distinct interventions and possible adjunct techniques and entails
various risks to mother and child-to-be.
Sperm is most often obtained directly from the prospective father; less
frequently it is procured from a donor. Obtaining ova is significantly more
difficult, painful, and costly. The ova provider is most often also the
prospective gestational and rearing mother. The process usually involves
the chemical stimulation of her ovaries to produce many more mature ova
than the single egg released during a typical menstrual cycle. This is called
“superovulation.” One possible complication from this procedure is
“Ovarian Hyperstimulation Syndrome,” which involves severe enlargement
of the ovaries and fluid imbalances that in extreme circumstances cause
serious health risks, including death. Such severe cases of the disorder are
rare, with a clinical incidence of 0.5–5 percent.17
The clinician tests the patient’s blood and monitors the ova maturation.
Once mature, the ova are harvested, most often by ultrasound-guided
transvaginal aspiration. Using ultrasound to visualize the procedure, the
clinician inserts a needle into the wall of the vagina and withdraws the ova
from the ovarian follicles. Complications from this procedure are rare but
can include accidental perforation of nearby organs and the typical risks
associated with outpatient surgery.
Once the ova are removed they are placed in a culture medium. Sperm
are modified—seminal fluid is removed and replaced with a synthetic
medium. Sometimes sperm are sorted for motility.
Conception is attempted in vitro by combining the gametes in a dish, in
hopes that a sperm fuses with the egg, from which arises a new, genetically
distinct living human organism, the embryo. The traditional method of
attempting fertilization is simply to collocate ova and sperm and wait for
fertilization to occur as it might in the fallopian tube. There are other
methods, including Gamete Intrafallopian Transfer (GIFT), in which the
gametes are inserted into the patient’s fallopian tube in hopes that
fertilization will occur.18 But an increasingly common fertilization
technique is called Intracytoplasmic Sperm Injection (ICSI), which involves
the direct injection of one sperm into the ovum.19 ICSI was discovered by
accident (when Belgian researchers mistakenly injected a sperm into an
ovum) but was later developed as a method of fertilization for men
suffering from male factor infertility. Its rate of use has increased
dramatically even for cases not involving this condition. From 2007 to
2016, the total percentage of cycles involving ICSI increased from 72
percent to 81 percent.20 Among cycles without male factor infertility, ICSI
use increased from 15.4 percent in 1996 to 66.9 percent in 2012.21 The
reason for this increase is not clear. According to the CDC, the “use of ICSI
did not improve reproductive outcomes, regardless of whether male factor
infertility was present.”22 While instances of fertilization may have
improved, the rate of live births has not. “For cycles without male factor
infertility, ICSI use was associated with decreased rates of implantation,
pregnancy, live birth, and multiple live births compared with conventional
IVF.”23 Some have speculated that the inefficacy of ICSI may be connected
to the circumvention of the usual competition among sperm to penetrate the
egg, allowing “unfit” sperm that would not have survived this natural
process to fertilize the egg.
If fertilization is successful, the embryos are placed in a culture
medium and evaluated for qualities that are associated with enhanced
likelihood of implantation (though according to clinicians this is an inexact
“science”).
Some embryos are evaluated using preimplantation genetic diagnosis
(PGD) to test for a variety of conditions, not all of which relate to the
physical health of the resulting child. A 2018 study found that among all
ART clinics in the United States, 92 percent offer PGD.24 In this process,
the early embryo is “biopsied,” and cells are removed for analysis.
Clinicians can perform the biopsy on the polar bodies just after fertilization,
on embryos three days following conception at the six-to-eight cell stage of
development (“cleavage stage” or “blastomere” biopsy), or on day five or
six at the blastocyst stage of development (“blastocyst” biopsy), when the
embryo is comprised of approximately one hundred twenty cells.25 PGD is
almost always combined with ICSI to make embryo biopsy a cleaner and
easier process. Two-cell biopsy has been associated with a decline in
successful implantation compared with single-cell biopsy. Some have raised
concerns about the long-term health effects on children born following
embryo biopsy—which, in the case of blastomere biopsy, can involve
removal of a significant percentage of the embryo’s cells prior to
implantation. The biopsied cells are evaluated for specific genetic or
chromosomal conditions. Those embryos that meet the predetermined
criteria are transferred to the patient or surrogate’s uterus or are frozen for
future reproductive purposes. Those embryos that fall short of the criteria
are discarded and destroyed.
PGD is commonly used to screen embryos for chromosomal
abnormalities associated with implantation failure and various disorders,
including Down Syndrome. It is also used to detect single-gene disorders
such as cystic fibrosis, Tay Sachs, and sickle cell disorder. (At present, more
than 1,000 single gene disorders have been identified.) PGD can also be
used to test for a heightened risk for some single-gene late onset diseases
and conditions such as certain forms of ovarian and breast cancer,
Huntington Disease, and Alzheimer’s Disease.26 PGD can even be used to
identify embryos that are immunocompatible with a sick older sibling. Such
embryos are transferred to a woman’s uterus to initiate a pregnancy, and
once such children are born, stem cells are harvested from their umbilical
cord blood and transplanted to the elder sibling. This procedure has been
used to treat children with Fanconi anemia.27
But PGD is also used for nonmedical purposes. Chromosomal analysis
in PGD can be used to determine the sex of the embryo. As of 2018, 73
percent of American IVF clinics offered PGD for sex selection.28 Of these
clinics, 94 percent offered sex selection for “family balancing” (for
example, choosing the sex of one’s offspring in light of current family
composition), and 81 percent offered it regardless of the patient’s
rationale.29 Moreover, 84 percent of clinics offered PGD for family
balancing and 75 percent offered it for purely elective sex selection for
patients not suffering from infertility, who could conceive and bear children
without assistance.30 Jeffrey Steinberg, a clinician in California, advertised
screening not just for sex selection, but to choose skin, eye, and hair color.
After public outrage, he discontinued screening for skin color, but continues
to offer it to choose eye color, a test with a reported success rate of 60
percent.31
Once the screening and evaluation is complete, the selected embryo or
embryos are transferred to the woman’s uterus in order to initiate a
pregnancy.32 Less often, the embryo is transferred to the patient’s fallopian
tube in a process called Zygote Intrafallopian Transfer (ZIFT).
The number of embryos transferred depends on a variety of factors,
including the patient’s age. Overall for cycles involving newly-conceived
(not frozen) nondonor embryos, 40 percent involved single embryo transfer,
49 percent two embryo transfer, 9 percent three embryo transfer, 2 percent
four embryo transfer, and 1 percent five or more embryo transfer.33
According to the CDC, the average number of embryos transferred per
patient has decreased dramatically over the past several years. The
percentage of elective single-embryo transfers has simultaneously
increased; from 2007 to 2016 the rate tripled from 12 percent to 40 percent
of all cycles.34 During this time period, the percentage has jumped from 5
percent to 43 percent for women under the age of 35, and from 3 percent to
25 percent for women 35–37 years old. At the same time, the percentage of
transfers of three embryos has dropped from 26 percent to 9 percent.35 As
will be seen in the passages that follow, the number of embryos transferred
has a significant impact on the health and well-being of mothers and
children, and is thus crucial to any reflection on the regulation of assisted
reproductive technology.
Embryos not transferred or discarded due to failed screening are
cryopreserved in freezers. Studies suggest that the vast majority of these
embryos are designated for use in future reproductive cycles. Very few (as a
percentage) are discarded, donated to other patients, or to researchers. Most
remain in cryostorage indefinitely. It has been estimated that one million
human embryos are stored in freezers in the United States.36
There have been several high-profile court cases involving custody
disputes over frozen embryos, usually featuring the ex-spouses who
conceived them. Most often, one ex-spouse seeks to implant the embryos
and bring them to term (either herself or by donation to another fertility
patient), whereas the other wants the embryos destroyed in order to prevent
the birth of children with whom he or she would have a biological
relationship.
In IVF, embryos are most commonly transferred to the recipient’s
uterus to initiate a clinical pregnancy, marked by implantation of the
embryo in the uterine lining.
Pregnancies are monitored closely, and women frequently receive
treatments, including progesterone, to maintain the health of the child-to-be.
In 2016, 27 percent of IVF cycles (and 44 percent of embryo transfers)
resulted in a clinical pregnancy.37 A significant percentage were multi-fetal
pregnancies (21 percent). Among the cycles involving newly-conceived
nondonor embryos, 20 percent of the pregnancies involved twins, and 1.1
percent triplets or more; 73 percent of the pregnancies were singleton.38
Multiple gestation pregnancies, attributable in large part to the practice
of multiple embryo transfer described above, pose greater health risks to
women. As reported by the President’s Council on Bioethics in its 2004
report Reproduction and Responsibility: The Regulation of New
Biotechnologies, potential complications associated with multiple gestation
pregnancies include high blood pressure, anemia, preeclampsia, uterine
rupture, placenta previa, or abruption. Multiple gestation pregnancies are
also more likely to aggravate preexisting health conditions than a singleton
pregnancy.39
According to the CDC’s most recent analysis, 22 percent of IVF cycles
(and 36 percent of embryo transfers) involving newly-conceived nondonor
embryos resulted in a live born child.40 Of the all pregnancies initiated via
IVF, 81 percent resulted in live births. Of these births, 19.4 percent involved
multiple newborns (18.8 percent twins) and 81 percent singleton babies.41
By way of comparison, the overall birth rate of twins in the U.S. during the
same period was 3 percent (one third of which is attributed to fertility
treatments).42 Seventy-seven percent of higher order multiple births in the
U.S. are attributed to ART.43 However, statistics compiled by the CDC
indicate that there is a downward trend in these numbers due to
improvements in IVF and the increased incidence of single-embryo transfer.
“From 2007 through 2016, the percentage of multiple-infant live births
decreased from 35 percent to 20 percent for women younger than age 35,
from 30 percent to 21 percent for women aged 35–37, from 24 percent to 18
percent for women aged 38–40, and from 15 percent to 13 percent for
women aged 41–42.”44
IVF is associated with preterm births (defined as birth before thirty-
seven weeks of pregnancy) and low birthweight (5.5 pounds or less). A
recent study found that IVF increases the risk of preterm birth by 80
percent. The study set the rate of preterm birth from natural pregnancy at
5.5 percent.45 According to the CDC, in 2016 the percentage of cycles
resulting in preterm births for single infants from singleton pregnancies was
11.1 percent (16.7 percent for single babies born after multiple gestation
pregnancies). For twins and higher order multiple newborns, the rates of
preterm birth and low birthweight increase dramatically. The CDC reports
that for twins, 57.6 percent of cycles resulted in preterm birth and 54.4
percent of cycles involved low birthweight. For triplets or more, the
percentages of preterm birth and low birthweight jump, respectively, to 97.2
percent and 87.8 percent.46
Preterm birth and low birthweight are associated with a host of adverse
health outcomes for children. According to the CDC, such children are “at a
greater risk of death in the first year of life, as well as other poor health
outcomes, including visual and hearing problems, intellectual and learning
disabilities, and behavioral and emotional problems throughout life.”47
There has been some concern raised that the use of IVF increases the
incidence of birth defects among children conceived with its aid. The CDC
recently conducted a study of four million infants and found that “singleton
infants conceived using ART were 40 percent more likely to have a
nonchromosomal birth defect (such as cleft lip and / or palate or a
congenital heart defect) compared with all other singleton births.”48 But the
authors of the study caution that more investigation is required, as the
researchers did not control for “some factors related to infertility” that
might account for the increased rate of birth defects.49
Despite the enhanced risks, the rate of birth defects overall is relatively
low. A 2012 study in the New England Journal of Medicine found that the
rate of birth defects for children conceived by ART was 8.3 percent versus
5.8 percent for those conceived naturally.50
The CDC likewise reports that “overall, children conceived using ART
were about two times more likely to be diagnosed with ASD [autism
spectrum disorder] compared to children conceived without ART.” The
reason for this higher rate appears to be linked to increased rate of adverse
ART pregnancy and delivery outcomes that seem to correlate with an ASD
diagnosis, including being born a twin or higher order multiple, preterm
birth, and low birthweight. The CDC has called for more study of the
issue.51
The use of ICSI, which appears to be increasing every year, including
among male patients without male-factor infertility, has been associated
with possible adverse outcomes. A diagnosis of ASD is more common for
children conceived using ICSI than conventional IVF. The CDC reports,
“Findings from some but not all studies suggest that ICSI is associated with
an increased risk of chromosomal abnormalities, autism, intellectual
disabilities, and birth defects compared with conventional IVF.”52 However,
the report cautioned that these risks “may also be due to the effects of
subfertility.”53 For example, if a man who suffers from a particular form of
male factor infertility (associated with low sperm count and a particular Y-
chromosome deletion) is able to successfully fertilize an ovum via ICSI, he
risks passing this chromosomal abnormality on to the child, who, if male,
will likewise be infertile.
SURROGACY
While the issue of surrogacy is vast and complex, and largely beyond the
scope of this chapter, a few brief comments are in order. The CDC reports
that the overall use of gestational surrogates is rare (around 3 percent), but
the incidence has more than doubled over the past decade and a half.54
Between 1999 and 2013, the agency reports that ART cycles involving
gestational surrogates resulted in 13,380 deliveries and the birth of 18,400
babies.55 Intended parents who use gestational carriers are generally older
than those who do not. The majority of gestational carriers are younger than
35.56 ART cycles involving gestational carriers had higher rates of success
than cycles where the intended mother carried the baby, measured by
pregnancies and live births. However, due to the transfer of a greater
number of embryos per cycle (two or more), gestational carrier cycles had
higher rates of multiple births and preterm delivery.57
LEGAL LANDSCAPE
Assisted reproductive techniques are subject to the federal laws regulating
the safety and efficacy of drugs, devices, and biological products, and
preventing the spread of communicable disease. The physicians who work
in ART must be licensed and certified to practice medicine, and are, like all
doctors, subject to the incentives and deterrents of medical malpractice law
and the more general civil and criminal laws of the jurisdictions where they
reside. But as such, the legal landscape of ART is famously and
controversially sparse. The absence of specific and meaningful regulation
of ART in the United States is quite surprising, especially to foreign
observers, given that it is the only medical intervention that ostensibly
results in the creation and birth of a new human being. Moreover, ART is
singular in the world of medicine because it frequently does not aim at
curing the patient’s underlying pathology, but rather at circumventing it.
IVF does not cure infertility, it works around it. Be that as it may, there is
simply not much law dedicated to regulating ART qua ART in the United
States.
The only federal statute specifically dedicated to ART, the Fertility
Clinic Success Rate and Certification Act of 1992 (FCSRCA), is a weak
consumer protection law.58 It does two things. First, it creates a model
program for the certification of embryo laboratories that clinicians are free
to adopt voluntarily if they wish. There is no evidence that this has had any
perceptible effect; in its analysis the President’s Council on Bioethics
reported that not a single embryo laboratory in America had adopted the
model framework offered by the statute.59
The second function of the FCSRCA is to mandate that all clinics in
the United States practicing ART report annually to the CDC certain data
relevant to success rates. CDC contracts with the Society for Assisted
Reproductive Technology (SART)—an ART professional organization
comprised of most clinics in the nation—to validate the information
provided. SART conducts an audit of a small sample of clinics each year to
confirm data reported. The CDC analyzes the data and issues publicly
available reports that include some (though not all) of the information
gathered. It reports success rates (reported both per “cycle,” defined as a
process that starts “when a woman begins taking fertility drugs or having
her ovaries monitored for follicle production,” and per embryo transfer),
type of ART performed, and patient diagnoses of infertility.
The CDC does not, however, report information of crucial relevance to
prospective patients. It includes no information on the types or rate of
adverse health outcomes to mother or child (beyond noting the percentage
of term, normal weight, and singleton births). It does not include any
information regarding the costs of procedures. It does not include
information on the number of human embryos created, frozen, or destroyed.
Some clinicians reported to the President’s Council on Bioethics that
“success rate” as a reporting metric is highly manipulable by unscrupulous
clinics.60 For example, the numbers could be artificially inflated by
accepting only the most promising patients, by terminating and
reclassifying unsuccessful cycles rather than reporting them, and by other
similar tactics.
Most worrisome to critics of the CDC surveillance regime established
by FCSRCA is that there are no serious penalties for noncompliance other
than the publication of the offending clinic’s name in the report itself.
Beyond the listing of these names on the CDC’s website, the FCSRCA has
no enforcement mechanism.
There is an additional federal law that has an incidental effect on ART
research. In 1996, Congress, via an appropriations “rider” (a spending
restriction appended to the annual federal statute that appropriates funding
to government agencies), prohibited federal funding for “the creation of a
human embryo or embryos for research purposes” as well as for research
“in which a human embryo or embryos are destroyed, discarded, or
knowingly subjected to risk of injury or death greater than that allowed for
research on fetuses in utero under” relevant federal regulations on human
subjects protections.61 This law, known as the “Dickey-Wicker” amendment
(named after sponsors Jay Dickey and Roger Wicker) does not limit the
practice of ART, though it does prevent federal funding of ART research
that runs afoul of its criteria.
For the most part, ART is regulated just as any other branch of
medicine, primarily at the state level. The law touches medicine mostly at
the front end, at the point of licensure and certification to practice. The
primary legal tool to regulate the ongoing practice of medicine is the private
law of malpractice. The legal standard for malpractice liability is conduct
that falls below the “standard of care”—the type and level of care of an
ordinary prudent physician, with the same training and experience, under
the same circumstances. The standard is established through expert
testimony regarding the practices of the specialty in question. Plaintiffs can
also sue doctors in tort for misconduct associated with the failure to obtain
proper informed consent. But malpractice litigation is a reactive and ad hoc
form of governance.
There is no systematic mechanism for ongoing regulation and oversight
of the practice of medicine. There is not, for example, any administrative
agency charged with this responsibility. The FDA regulates the drugs,
devices, and biological products used by ART physicians for safety and
efficacy, but does not regulate the practice of medicine itself. It does
administer a statutory framework (established by the Public Health Services
Act) for preventing the spread of communicable diseases. Under these
auspices it promulgates regulations for the screening and use of “Human
Cells, Tissues, and Cellular and Tissue-Based Products.” But FDA has, at
the urging of the ART professional societies and “individuals who facilitate
embryo donation,” carved out very broad exemptions for sperm, egg, and
embryos used in IVF.62
There have been a few notable exceptions to the FDA’s general practice
of non-interference with ART. In 1998, Associate Commissioner of the
FDA Stuart Nightingale issued a “Dear Colleague” letter asserting that the
agency had jurisdiction over any experiment involving cloning to produce a
live born child, presumably under its authority to regulate gene transfer
research. The letter advised researchers that the agency would not approve
such practices, given safety concerns.63 Later in 2001, Kathryn Zoon, a
former head of the agency’s Center for Biologics Evaluation and Research
(CBER), which oversees human gene therapy research64 speculated that if
such concerns over safety and efficacy were resolved, proposed research on
cloning to produce children would be approved.65 FDA’s announcement was
criticized as exceeding the agency’s authority under the statutes it was
created to administer. After the 2001 Zoon statement, the FDA has not
reasserted similar claims of authority. Some commentators have speculated
that the earlier statements by the agency were meant as a bluff to deter
unscrupulous researchers from proceeding; others have suggested that they
were meant to discourage Congress from adopting overly restrictive
legislation disfavored by the scientific community by assuring members
that the agency was in control of the situation.
More recently, Congress adopted an appropriations rider forbidding the
FDA from approving “research in which a human embryo is intentionally
created or modified to include a heritable genetic modification.”66 The
“Aderholt Amendment” (named for its Congressional sponsor Robert
Aderholt) effectively forbids gene editing of embryos as part of IVF
treatment, because such changes would be “heritable” to the future
generations of genetic descendants of the adults these embryos would later
become. The Aderholt Amendment also forbids the various methods of
mitochondrial disease treatment that involve the creation and transfer of an
embryo with the mitochondrial DNA from two women (usually from a
donor and the mother), and the nuclear DNA of the mother and father. Such
embryos are sometimes called “Three Parent Embryos.” Because
mitochondrial DNA is maternally inherited, any female offspring conceived
with the aid of these techniques will likewise pass along the donor
mitochondrial DNA to her genetic children. All female descendants in this
line will likewise pass the genetic change to their offspring.67 The Aderholt
Amendment has been renewed every year since its adoption in 2015.
Putting aside these very atypical examples of FDA involvement in the
practice of medicine, ART proceeds largely unregulated by any
administrative agency. Physicians are thus left free to practice medicine
with a creativity and dynamism that might not be possible with a more
cumbersome, comprehensive regime of ongoing oversight. The deference to
physicians in the law signals the well-earned respect and esteem in which
the profession of medicine is held in American culture. But as applied to
ART, which is sui generis in both its means and ends, this largely laissez
faire framework has been a source of consternation. Novel practices such as
ICSI and PGD move from bench to bedside very rapidly and become
routine in short order. This passage from the President’s Council on
Bioethics report is arresting:
IVF itself was performed on at least 1,200 women before it was
reported to have been performed on chimps, although it had been
extensively investigated in rabbits, hamsters, and mice. The same
is true for ICSI. The reproductive use of ICSI was first introduced
by Belgian researchers in 1992. Two years later, relying on a two-
study review of safety and efficacy, ASRM [the American Society
for Reproductive Medicine] declared ICSI to be a “clinical” rather
than “experimental” procedure. Yet the first non-human primate
conceived was born only in 1997 and the first successful ICSI
procedure in mice was reported in 1995.68
Whereas creativity, dynamism, and an entrepreneurial spirit are highly
valued when medical practice simply aims to restore a patient to health, the
calculus is quite different when the “cure” involves the creation of a new
human being. The background facts of IVF’s exorbitant cost, the market
pressures on clinics to show greater “success” than their competitors, and
the human desperation and vulnerability understandably caused by
infertility all combine to create strong temptations for everyone involved to
push the envelope of innovation when more caution is in order.
STATE COURTS AND ART
The handful of state supreme court opinions dealing directly with ART
involve custody disputes over frozen embryos, usually between former
spouses. There are divergent approaches, with some state supreme courts
(New York, Washington, Colorado, and Tennessee) signaling a willingness
to treat such disputes as straightforward contract cases, applying the terms
of any valid prior agreement that sets forth the procedures for embryo
disposition under the circumstances.69 Other state courts of last resort, such
as Massachusetts, have refused to enforce such agreements, at least when
they appear to require transfer, gestation, and birth against the wishes of one
of the parties.70 Still other state supreme courts, like New Jersey and Iowa,
have refused to enforce prior agreements when parties change their minds
about embryo custody and disposition.71
Despite the disagreement in framing, there are some commonalities
among the decisions of these courts of last resort. First, none of them have
permitted one partner to implant embryos, gestate, and deliver a baby over
the objections of the other.72 Second, none have treated the frozen embryos
as legal persons or children, despite entreaties by one of the parties or the
decision of the lower court. Instead, such courts have either deemed frozen
embryos to have some “intermediate status” between persons and things, or
simply treated them as marital property. Some state courts have explicitly
invoked the U.S. Supreme Court’s abortion jurisprudence to support their
conclusion that the human embryos at issue are not “persons,” despite the
absence of the unique burdens present in pregnancy. Finally, the state
supreme courts have drawn deeply upon the principles of reproductive
liberty, autonomy, and privacy of American abortion jurisprudence as the
touchstone for analysis, and all but one have evinced a strong presumption
for enforcing the wishes of the party seeking to “avoid procreation” and the
unchosen familial relationship with child born as a result.73
In the context of surrogacy, there have been some recent high-profile
examples of disputes between gestational carriers and intended parents.
Two recent instances involved intended parents demanding that the
surrogate abort her pregnancy because the child-to-be was diagnosed in
utero with an adverse but treatable medical condition. In one case, Andrea
Ott-Dahl agreed to be a gestational carrier (and an egg donor) for a lesbian
couple unable to conceive using ART. When a twelve-week ultrasound
revealed that the child-to-be likely had Down Syndrome, the intended
parents demanded that Ott-Dahl terminate the pregnancy. Ott-Dahl refused
and informed the intended parents that she and her wife Keston planned to
keep the baby. The intended parents threatened to sue to try to compel the
termination or seek damages, but ultimately did not.74 In another case, two
intended parents demanded that a surrogate terminate her pregnancy when
the child-to-be was diagnosed in utero with a severe heart defect—
Hypoplastic Left Heart Syndrome (HLHS). HLHS is fatal if untreated.
However, with a surgical intervention it has a survival rate of 70 percent,
though patients may require continued monitoring and care throughout their
lives. The surrogate refused to terminate the pregnancy but reported a great
deal of anxiety when she learned that the intended parents intended to opt
against life-sustaining measures and let the baby die once they assumed
custody of the baby following its birth. In a newspaper interview, the
surrogate reported with relief that the intended parents changed their minds
and sought treatment for the baby.75
There have been other recent cases in which the intended parent or
parents directed the surrogate to abort (“reduce”) one of the multiple fetuses
she was carrying. California resident Melissa Cook contracted to be a
gestational carrier for a fifty-year old deaf and mute single man from
Georgia who lived alone with his elderly parents. When he discovered that
she was carrying triplets, he demanded that she selectively abort one of
them to avoid the costs of raising three children. She refused, and he sued.
Her parental rights were terminated upon birth and custody was awarded to
him. She unsuccessfully sought relief in the California courts and the
United States Supreme Court.76
Gestational carrier (and California resident) Brandyrose Torres read
about the dispute involving Melissa Cook and came forward to tell her story
to the press. She was directed by the intended parents to abort one of the
triplets she was carrying, even though the pregnancy was healthy and none
of the children-to-be were in distress. Torres refused and the intended
parents threatened suit for breach of contract. Ultimately, Torres gave birth
to the triplets and conveyed custody to the intended parents.77
LEGAL OVERSIGHT OF ART QUA ART
The findings of the President’s Council on Bioethics in 2004 regarding the
legal landscape for ART qua ART remain effectively unchanged. To wit,
“there is no uniform, comprehensive, and enforceable system of data
collection, monitoring or oversight for the biotechnologies affecting human
reproduction.”78 Direct governmental regulation of ART is minimal. The
FCSRCA remains a very weak consumer protection law. Most worrisome to
the Council was the absence of a legal framework for comprehensive
research or regulation focused on the possible effects of ART on the health
and well-being of children conceived with its aid, gestational mothers, and
egg donors.79 The Council further observed that in the absence of such
regulation, “novel technologies and practices that are successful move from
the experimental context to clinical practice with relatively little oversight
or deliberation.”80 It noted that PGD is essentially unregulated, with no
comprehensive data gathering on the health impact on children born
following its use, and no limits on its specific applications, including
screening for non-medical criteria such as sex, intelligence, or eye color.
The Council observed that there is no comprehensive, uniform legal
framework or information gathering system regarding the creation, use, and
disposition of human embryos in ART.81 It further noted that “there is no
comprehensive mechanism for regulation of commerce in gametes,
embryos, and assisted reproductive technology services.”82
All of these observations remain true today.
In the absence of comprehensive governmental regulation, the practice
standards and ethical guidelines governing ART doctors are promulgated by
the profession itself—through professional associations and practitioner
societies. Thus, self-regulation is the primary mode of governance for ART.
The primary professional societies who set these standards, the American
Society for Reproductive Medicine and the Society for Assisted
Reproductive Technologies, have been criticized in some quarters
(including by the patient advocacy community) for being too permissive.
Supporters of these organizations retort that the purpose is not to police
members and that a lighter self-regulatory touch is more likely to keep
members aligned with the values of the professional societies. It is very
clear that the core animating normative goods driving the prescriptive
pronouncements of ASRM (which promulgates ethics and practice
guidelines) are patient autonomy and reproductive liberty.
THE ANTHROPOLOGY OF AMERICAN ART LAW
Like the American jurisprudence of abortion, the anthropology of the legal
landscape for ART is expressive individualism. The vision of identity and
flourishing assumed by ART law becomes clear when one considers the
type of liberty that emerges from the absence of meaningful regulation.
From this absence of law arises a very particular kind of freedom, perfectly
suited for the atomized individual will seeking to express the originality
discovered within itself, and to pursue the life plan of its own authentic
design. It is the singular freedom of the unencumbered self, lacking
constitutive attachments and unchosen obligations, for whom relationships
are either transactional or adversarial, but always instrumental. It does not
take embodiment into account, and as anyone who has ever suffered from
or has loved someone suffering from infertility understands, it not the kind
of freedom that responds fully to the pain of those longing for a child, who
feel betrayed by their bodies. Whereas the American law of abortion
responds to the complex crisis of unplanned pregnancy by conferring the
simple and brute liberty to eliminate the nascent human life in utero, the
American law of ART responds to the vulnerability and suffering of
infertility by conferring the freedom to create new life by nearly any means
necessary. These are rules and remedies designed for persons understood
through the imperfect lens of expressive individualism.
A fruitful point of entry into the anthropology of American ART law is
through the writings of the man who was arguably the intellectual godfather
of the United States framework, the late Professor John Robertson.
Robertson, a prolific scholar of the law, was an iconic figure in American
public bioethics for decades, serving on numerous influential governmental
and private sector advisory committees, including an extended term as
Chairman of the American Society for Reproductive Medicine’s Ethics
Committee. Perhaps more than any single person, Robertson’s thought and
work is reflected in the modern American legal framework for ART. To
understand the anthropology of the law of ART, it is important to explore
briefly his conception of human identity and flourishing. Robertson
published numerous essays and scholarly articles until his untimely death in
2017, but the most useful and comprehensive source for understanding his
vision and the current legal landscape is his 1994 book, aptly titled Children
of Choice. The themes and concepts he developed in this work recur
throughout his whole body of scholarship and advocacy, and have become
core animating principles of the current legal paradigm for ART in
America.
Robertson’s normative framework is squarely anchored in the primacy
of “procreative liberty,” which in his words is “first and foremost an
individual interest.”83 He defines procreative liberty as simply “the freedom
to decide whether or not to have offspring.”84 It can often be difficult to
determine when Robertson is describing current law and policy or making a
moral argument, but this difficulty springs in part from the fact that the law
as it currently exists (or, more precisely, the absence of law) broadly mirrors
Robertson’s approach. He roots the right to procreative liberty explicitly in
the Supreme Court jurisprudence of contraception and abortion, styled as
the right to avoid procreation.
From this he infers the converse aspect of procreative liberty, namely,
the freedom to pursue procreation, both coitally and noncoitally. For
Robertson, the right to procreation is a negative right, meaning the
government cannot interfere with its exercise. But it is not a positive right;
the government is not obliged to facilitate its practice.
Procreative liberty is essential to human flourishing according to
Robertson, because it is necessary for self-defining experiences that people
greatly value. Maximal freedom to use reproductive technologies is thus
crucial because “they are the means to achieve or avoid the reproductive
experiences that are central to personal conceptions of meaning and
identity.”85 Restrictions on the freedom to avoid procreation unjustly
“determine one’s self-definition in its most basic sense,” whereas limits on
the pursuit of procreation through one’s chosen means “prevents one from
an experience that is central to individual identity and meaning in life.”86
Accordingly, the rights of procreative liberty should be jealously guarded
and walled off from state interference except for the most compelling
reasons, which Robertson suggests are “seldom” present.87
Framed as an operational legal standard to govern conflicts in this
domain, Robertson argues that “procreative liberty should enjoy
presumptive primacy when conflicts about its exercise arise because control
over whether one reproduces or not is central to personal identity, to dignity,
and to the meaning of one’s life.”88 Those who would restrict procreative
liberty always bear the burden of demonstrating that it is necessary to
prevent “substantial harms to the tangible interests of others.”89
But what kinds of practices fall within the scope of procreative liberty?
Here again, Robertson defines the field of protected activities according to
their subjective value to the individual involved. “A person’s capacity to
find significance in reproduction should determine whether one holds the
presumptive right.”90
Even the discrete, isolated actions of gamete donation or gestation
without any intent to parent the child born can offer highly valuable and
meaningful experiences to donors and gestational carriers. Accordingly,
they should be protected from state interference.
When presented with a particular application of reproductive
technology, Robertson asks whether the activity is “so central to an
individual’s procreative identity or life plan” that it deserves protection
under the aegis of procreative liberty.91
What about screening embryos for preferred traits or conditions?
According to Robertson, “Some degree of quality control would seem
logically to fall within the realm of procreative liberty.”92 At points in his
writings, Robertson seems to entertain the possibility that certain practices
that fall outside the mainstream and to which most people would not ascribe
value (for example, genetic enhancement) might lie beyond the scope of
procreative liberty, but he always stops short of categorically ruling them
out. It is difficult to see how his larger normative framework of maximal
procreative liberty would allow such restrictions in the absence of serious
harms to others.
What kinds of harms are sufficient for Robertson to curtail procreative
freedom? Use and destruction of in vitro embryos do not constitute
sufficient harms to restrict procreative liberty. Robertson rules out the
possibility that they are “persons,” but seems to suggest that they should be
respected insofar as they have the potential to become a person (if they are
transferred, gestated and born), and because of the “symbolic meaning”
they hold for “many people.”93 But these interests are easily outweighed in
the face of an individual’s desire to procreate. Robertson also holds that the
fetus in utero is likewise not a person, and therefore may be destroyed to
vindicate the right of a pregnant woman not to procreate. He states
explicitly that in his view, no one has the right to be born.94
What about harms to children later born who are injured by the ART
techniques from which they are conceived? Or harms to such children
caused by their genetic parents’ underlying pathologies that required the use
of ART to conceive in the first place? For Robertson, it turns out that in
almost every instance, such harms are also not sufficient to justify
restrictions on procreative liberty. In fact, he does not recognize injuries
caused by IVF and adjunct techniques to be a “harm,” rightly understood.
In support of this proposition, Robertson invokes philosopher Derek Parfit’s
“non-identity problem,” which holds that if a person is harmed by the very
intervention that made his existence possible (such as ICSI), and the only
way to prevent such harms is not to use this intervention at all, then such a
restriction is not a benefit to the person, because he would not otherwise
exist.95 Moreover, because his life in the injured state is not worse than
nonexistence, the use of the harmful technique is, in fact, a benefit to him.
Following this reasoning, Robertson concludes that for children harmed by
such techniques, “ARTs to enable their birth does not harm them and does
not justify restriction on those grounds.”96
Turning to concrete cases, Robertson applies this principle to the risk of
birth defects from ICSI and concludes that children born with these
afflictions would not be “harmed,” because the alternative future for them is
nonexistence.97 Thus, restrictions on ICSI to prevent birth defects in
children are not justifiable restrictions on procreative liberty. For the same
reasons, Robertson expresses opposition to bans on the transfer of multiple
embryos to prevent harms associated with preterm birth and low
birthweight. He likewise opposes bans on novel forms of procreation
including the use of gametes derived from stem cells or fetuses, genetic
manipulation of embryos, or even cloning to produce a live born child, if
the reason for such bans is to protect the well-being of the child born as a
result. He does not regard such harm as cognizable. If the freedom to pursue
these modes of producing children is to be limited, it must be justified on
other grounds. Robertson is doubtful that alternative rationales for bans or
restrictions would be compelling.
Robertson does allow the possibility that some intentions of parents, if
they do not entail the desire to rear the child, might put the enterprise
outside the domain of “procreative liberty.” And he notes that state interests
(other than preventing harm to children—which he does not recognize)
“might” warrant regulation when parents’ aims are far afield of “traditional
reproductive goals.”98 But in making this allowance, it is once again not
clear if Robertson is describing the law as it is or as it should be. Moreover,
it is difficult to reconcile this solicitude for “traditional reproductive goals”
in light of the almost unalloyed libertarian orientation of Robertson’s
approach.
Surveying the current American legal landscape for ART, it is more or
less John Robertson’s world. His views have not been constitutionalized by
the Supreme Court, but the absence of meaningful, comprehensive
regulation and oversight of ART creates conditions that closely approximate
his vision of “procreative liberty.” There are no legal limitations specific to
ART meant to protect the health and well-being of children born with its
aid. There are no legal restrictions on techniques that are routinely used that
result in a massive increase in risk of preterm births and low birthweight,
with associated adverse health consequences for such children. There is no
regulation or even federally sponsored longitudinal study of commonly
used interventions that appear to increase the risk of birth defects, autism,
and other maladies. Parents, including those who are not infertile, freely use
PGD to select the sex of their children by transferring preferred embryos
and discarding others. Parents use PGD to screen and discard those
embryos who have a higher probability of contracting treatable diseases that
do not appear until later in life. Organizations advertise predictive testing
for low intelligence, with the promise of developing tests for predicting
high intelligence in the near term. People screen embryos for eye and hair
color. People buy and sell sperm, eggs, and even “batches” of embryos.
Intended parents who contract with gestational carriers sometimes demand
the abortion of children-to-be with adverse but treatable medical conditions,
threatening lawsuits and the withdrawal of financial support. There are a
million human embryos stored in freezers as a result of the absence of
comprehensive and uniform laws governing their creation, use, and
disposition.
All of these practices are legal and unrestricted, creating a domain of
free choice and private ordering that replicates Robertson’s vison of
procreative liberty. And, with Robertson’s work as an interpretive guide, it
is clear that this particular conception of liberty is firmly rooted in the
anthropology of expressive individualism. As Robertson states explicitly,
this liberty is meant to serve individuals in their quest to pursue
reproductive experiences that they highly value as meaningful and essential
to self-definition. Human bodies at all stages from embryonic to adult are
recruited as instrumentalities of these personal projects. In some cases, the
body and its parts are explicitly reduced to articles of commerce. People
enter and exit intimate procreative relationships marked by contract and
bargained-for exchange. Parental relationships, be they genetic or
gestational, are created, avoided, and dissolved through will, choice, and
rational ordering. Procreative liberty thus understood alters the role of
physician from servant of health and wholeness to a skilled technician
enabling the projects of the will. Thus “health” itself is transformed from a
concept connected to the natural functioning of the organism to one nested
in will and desire.
This notion of procreative liberty, following its anthropological
foundation of expressive individualism, reorients the purposes of
reproduction from the aim of bringing about the birth of one’s child to the
satisfaction the self-defining goals of the individuals involved. This
transformation of purpose was evident in the 2002 comment of Dr. Gerald
Schatten in his testimony to the President’s Council on Bioethics:
“Reproductive medicine is helping prospective parents realize their own
dreams for a disease free legacy.”99 But the version of procreative liberty
nested in expressive individualism that arises from the American legal
landscape of ART encompasses dreams of more than just a disease-free
legacy. It includes a legacy free from a much broader array of imperfection,
including even the presence of children of a disfavored sex.
And like all legal frameworks built upon expressive individualism, the
current regime is blind to the vulnerability, dependence, and fragility that
inexorably attends an embodied life. The American law of ART does not
consider the vulnerable and dependent child-to-be in the calculus of
interests to be protected and harms to be avoided. Along with John
Robertson, American law does not count prevention of harms to children
caused by the ART interventions by which they were conceived as grounds
for restricting procreative liberty. The law is designed to serve the desires of
those seeking to reproduce, despite the risks to the health of the child-to-be
discussed above. It likewise fails to adequately protect the health and well-
being of the genetic or gestational mothers.
Even evaluated according to the metrics of the law’s own aspiration for
consumer protection, it does not sufficiently protect ART patients (clients?)
—men and women who are profoundly vulnerable by virtue of the deep
sadness, exhaustion, and desperation caused by infertility, along with the
potentially ruinous financial costs of pursuing treatment for it. The law does
nothing to aid their moral imagination—nothing to help them to see the
child-to-be at every step of the process as a gift to be treasured and
protected. It does nothing to protect them from themselves and the
temptation to undertake serious risks to their future child’s health and well-
being, not to mention their own. The law does not protect patients from
making dehumanizing and discriminatory choices like sex selection in
bringing their children into the world. The law indulges intolerance of
imperfection by allowing unfettered screening for all manner of “flaws.”
The law fails to teach against the destructive notion that the parent-child
relationship is defined by will, control, and mastery rather than
unconditional love and gratitude.
And the law as presently constituted does nothing to prevent the
community from coarsening and coming to see the entire enterprise not as
medically-aided conception and birth of children to be welcomed and loved
unconditionally, but rather as a form of manufacture of products subject to
quality assurance, and accepted or rejected according to their conformity
with the preferences and desires of the “customer” who paid for it.
Here again, the perils of a public bioethics rooted in expressive
individualism become apparent. The law is blind to the weak, vulnerable,
fragile, and dependent, and all interests and concerns are crowded out by
the law’s focus on the desires of the individual will seeking its own way.
ANTHROPOLOGICAL CORRECTIVE FOR PUBLIC BIOETHICS OF ART
But the law’s vision of procreative liberty is not the freedom that patients
seeking infertility treatment in the real world want or need. They are not
unencumbered selves, but people who are desperately seeking to embrace a
role that is defined by a relationship; they want to be a parent. And there is
no such thing as a parent without a child. Despite the weariness, sadness,
and even bitterness that comes with experiencing infertility as a betrayal by
one’s own body, they do not pursue ART to realize any dream of a
particular legacy or to assert their atomized will, but to be a mother or a
father.
Accordingly, for the public bioethics of ART to respond to their
neediness, promote their flourishing, and to protect them and their children
from harm (even arising from their own choices), it must begin with the
meaning and consequences of embodiment.
Accordingly, just as in the context of abortion, the task for the law is to
support, protect, and sustain the networks of uncalculated giving and
graceful receiving necessary to respond to the neediness of the vulnerable
and dependent, and through which embodied beings come to realize their
potential as the kind of persons who are able to make the goods of others
their own. By virtue of our individual and shared lives as embodied beings,
human flourishing is most profoundly achieved through love and
friendship. Of course, where such networks of shared sacrifice and support
are missing or become frayed, the law must step in to protect the
vulnerable, weak, and marginalized.
More concretely, just as in the context of abortion, the normative
paradigm most fitting to the public bioethics of assisted reproduction is
parenthood. Assisted reproduction, like all reproduction, involves parents
and children. The complexity that arises from advances in the medicine and
biotechnology of ART does not change this fact, even as it fractures the
previously integrated dimensions of procreation. Because of IVF and
related techniques and practices, there is the potential for many mothers and
fathers—genetic, gestational, and rearing. But all are mothers and fathers
just the same, albeit in different respects. They are made so by the fact that
they are engaged in the business of making and raising babies.
Thus understood, the networks of giving and receiving to which the
law should respond are those proper to parenthood, which includes, of
course, parents and children, but radiates outward to the physicians and
health care providers who serve them, extended family members,
neighbors, community, and polity (including the government itself), all of
whom are reciprocally obliged and entitled to render and receive mutual
aid.
An anthropology of embodiment and laws built upon it recognizes that
the most vulnerable protagonist of procreation is the child. She depends on
the uncalculated giving of her parents—of every sort—who will make her
good their own as they engage in whatever role they might play in her life.
By virtue of their relationship to her, the genetic, gestational, and rearing
parents must act in her best interests, and must make every effort to protect
her from harm, at every stage of her development from conception forward.
More deeply, her parents—all of them—must understand that she is a gift, a
person who has been conceived, not a product manufactured to serve the
desires of another. The proper disposition toward a gift is gratitude and
humility, not mastery and exploitation. She was not selected to meet
anyone’s specifications but emerged from a procreative process possessed
of intrinsic and equal dignity. Her “imperfections” or “flaws” are of no
consequence, except insofar as they are occasions for unconditional care
and support. Doubtless, to see her as she is at every stage of her life from
conception forward requires moral imagination. And to honor unchosen
obligations to her requires restraint, discipline, and sacrifice. But such is the
relationship of parent to child.
Parenting thus requires the virtues of uncalculated giving—just
generosity, hospitality, and, when necessary, accompanying the child in
suffering as if it were one’s own (misericordia). This means subordinating
one’s desires for the sake of one’s child—giving without concern for
receiving, in proportion to neediness. It also requires the virtue of gracefully
receiving the child who is a gift. This includes gratitude for the child,
humility (rather than the hubris of rational mastery), and openness to the
unbidden and tolerance of imperfection (rather than the drive to weed out
flaws).
The law, then, must support and sustain parents, regardless of type, in
discharging these obligations. It must facilitate the understanding and
practice of these virtues of parenthood. How and by what means the law
might most successfully enable this mindset and the goods and virtues that
follow from it are highly complicated questions requiring consideration of
factors well beyond the current inquiry. There are many means—passive
and active—that could be deployed to this end. But the law must begin by
expanding its anthropological foundation to encompass the meaning and
consequences of embodiment. Concretely, the law must offer support,
directly and indirectly, for parents of all sorts in fulfilling their duties to
children, whom they have a role in conceiving, gestating, and rearing.
Where parents and others fail to meet their obligations to the children,
the law must intervene to protect them directly. Again, what this might
mean concretely is a large question for another time, but at a minimum,
certain principles are clear enough. The law must closely regulate or
perhaps even prohibit medical interventions that foreseeably endanger the
health and well-being of children conceived with the aid of ARTs. To this
end, the government must conduct rigorous longitudinal studies on the
impact of ARTs on the flourishing of children, broadly understood. Whether
the harm to children is caused by the ART itself, or by the underlying
pathology of the infertile parent, the ultimate focus of the law should be on
protecting the health and flourishing of children.
Obvious areas of concern are practices that contribute to low
birthweight and preterm birth, increased rate of birth defects, as well as the
harms wrought by discriminatory and dehumanizing practices such as sex
selection, screening for disfavored traits, intolerance of the imperfect and
disabled, and the commodification of the body and its parts.100 States could
consider moratoria or bans on practices shown to be harmful.
Moreover, the law must be devised to secure the intrinsic equal dignity
of children conceived by ART, and to avoid the risk that others will regard
them as unequal and inferior to their “creators” because of how and why
they came into the world. They are not creatures devised in a lab to fulfill
the dreams of others. They are, in the words of Gil Meilaender, “begotten
and not made.”101
And it may go without saying, but the most fundamental goal of the
law in this domain is to ensure that every child born with the aid of ART is
received and raised as a son or daughter in a loving family: the network of
uncalculated giving and graceful receiving par excellence.
Reorienting the purposes of ART regulation toward the well-being of
the child will likewise have consequences for how medicine is practiced.
From the outset, measures taken must account for the downstream effects
on the child-to-be’s health and flourishing. In fact, given that the successful
culmination of the enterprise is the birth of a child, practitioners would do
well to think of the child-to-be as a patient in her own right, and make
choices with this in mind, even during the preconception stages of the
process. Again, how the law might contribute to shaping and directing these
behaviors is a complex question for another time.
Vulnerability and exploitation are possible at all stages of the ART
process. It is the obligation of the community and the polity to protect these
individuals, perhaps even from their own self-destructive decisions or
misguided choices that harm the children who are born with their
assistance. Areas of concern include the exploitation of gamete donors and
gestational surrogates, the commodification of the body and its parts, and
the use of IVF techniques and interventions that bear significant risks for
the women involved. Developing concrete legal structures responsive to
these concerns will, of course, require careful study, reflection, and
prudence across a wide spectrum of factors. But the goals, at least, are clear.
The networks of giving and receiving necessary to support the
dependent and vulnerable in this context do not merely encompass the
parents, children, and health care providers involved, but radiate outward to
extended family, community, and polity. The law must have a role in
strengthening these bonds and promoting the reciprocal rendering and
receiving of care.
It is important to address yet another vulnerable and dependent
population that is centrally involved in and affected by the lack of
meaningful regulation of ART as such in America, namely, the living
human embryos who are conceived, cultured, screened, transferred,
intentionally destroyed, donated to other patients, sold in “batches,” given
to scientists for use and destruction in research, or most often, frozen
indefinitely. The moral status of the human embryo is a central question of
public bioethics and has been since its inception. The public question has
been addressed by government advisory commissions, state legislatures,
state courts, administrative agencies, Congress, multiple presidents, and
several different intergovernmental bodies including the United Nations,
UNESCO, and the Council of Europe.
For present purposes, the narrow question is what (or who), exactly, is
the embryo in the context of ART? For commentators like John Robertson
and like-minded advocates of maximal procreative liberty, they are not
persons, despite their biological status as living organisms of the human
species. For some, they are simply raw biological materials to be used and
discarded with impunity; for others they have an “intermediate status”
warranting “special respect,” which precludes their use and destruction
except in compelling circumstances (though this turns out to be a very
broad category in practice).
The arguments against the personhood of the living human embryo
track the abortion debate somewhat, though the context is distinguishable,
as there are no burdens of unplanned pregnancy at issue. Some argue (like
Tooley and Warren) that embryos are not persons because they are not yet
capable of preferred capacities such as cognition, self-awareness, the
formulation of desires, and the creation of future directed plans.102
Others argue that embryos that are slated for destruction or indefinite
cryostorage are not persons because they will never develop these preferred
capacities as they will never enter an environment (namely, the womb) that
would support such development. Still others argue that all IVF embryos
are not persons based on the assertion that they are incredibly fragile and
that most will die of natural causes (“natural embryo loss”) before they
develop the preferred capacities of personhood. Some argue that they are
not persons because they are very small—“a tiny clump of cells no bigger
than the period at the end of this sentence.”103 Others assert that they are not
yet persons because they are not, in fact, human beings at all but merely “an
undifferentiated ball of cells.”104 Finally, there are those who argue that IVF
embryos are not persons prior to the formation of the “primitive streak”—a
biological structure that appears around 14 days of development that is the
precursor to the nervous system, after which the phenomenon of
monozygotic “twinning” is thought to be no longer possible. For such
advocates, the primitive streak signals the rudiments of the brain and spinal
cord—essential to the cognitive functioning associated with their
conception of personhood—and guarantees that the human organism is a
stable individual who will not divide into multiple individuals. These
arguments are sometimes made individually, sometimes in combination.
As discussed in the previous chapter, an anthropology of embodiment
construes the biological origins, structure, and function of the embryo
differently. It begins with a posture of great skepticism toward arguments
that make “personhood” contingent upon a being’s achievement of certain
milestones established by others relating to size, strength, cognition, and
dependence. This skepticism grows when those setting forth such criteria
for personhood are strongly motivated by the desire to use or destroy the
being whose moral status they seek to evaluate. Such decisionmakers have
a vested interest in a finding of non-personhood; if embryos are not persons,
then they are available for recruitment into the projects of others without
serious concern for their interests or well-being.
Viewed through the anthropology of embodiment, none of the
arguments for IVF embryo non-personhood are persuasive. All human
beings, because of their embodiment, exist on a “scale of disability,” with
their powers waxing and waning according to age, health, and
circumstance. As discussed in the last chapter, living members of the human
species need not meet tests for cognitive capacity or possess the abilities of
self-reflection and expression necessary to flourish as prescribed by the
anthropology of expressive individualism. The vulnerability and
dependence of the embryonic human being on others to supply a nurturing
environment to support her life and further development (namely, her
gestational mother’s womb) is no warrant to declare her a non-person
available for use or destruction. To the contrary, her vulnerability and
dependence—like all human vulnerability and dependence—are a summons
for care, concern, and protection. Nor is her small size or fragility a license
to treat her as a non-person. The claim that a high rate of embryo demise
prior to implantation and birth diminishes the moral worth of embryos is a
non sequitur; the same logic would lead to the false conclusion that a high
infant mortality rate reduces the moral value of babies in utero. In any
event, the rate of pregnancies initiated per transfer in IVF is quite high—45
percent for nonfrozen embryos and 56 percent for frozen embryos. The
overall rate of IVF pregnancies resulting in birth is 81 percent.105
Similarly, the claim that IVF embryos are “undifferentiated balls of
cells” does not accurately reflect their status as living organisms,
biologically or morally. An “organism” is an individual, whole living being
composed of parts that function in a coordinated manner to support growth
and development of the entity along a species-specific trajectory. Under this
definition, the IVF embryo screened and transferred, discarded, or
cryogenically stored is manifestly an organism. There is some debate
among embryologists about when exactly differentiation and coordination
among the component parts of the embryo occur (for example, within
moments following sperm-egg fusion or when the maternal and paternal
pro-nuclei fuse at syngamy approximately twenty-four hours later). Despite
this uncertainty, there is clear evidence of internally directed, coordinated
activity from days one to six, relevant to enabling implantation and further
development of the embryo.106 By virtue of its structure, function, and
composition, the IVF embryo is a living human organism.
Similarly, the capacity for embryo twinning does not undermine the
embryo’s status as an individual living human organism. In rare instances
(0.4 percent of births in natural reproduction, and two to twelve times
higher in IVF), some portion of the cells of an embryo will split off from
the whole, and resolve itself into a new, genetically identical “twin.”107
Some point to this unique capacity for regulation and restitution following
developmental disruption as evidence that the embryo is not yet
“individuated.” But this is not persuasive, given that indivisibility is not
necessary for individuation in an organism. The individual flatworm has the
bodily resilience to survive similar disruptions, with its severed parts
sometimes resolving into a new organism. So too with the human embryo at
early stages of development. Its resilience is not surprising given the
plasticity of its component parts, which give rise to all the tissue types and
structures of the mature body. But despite such plasticity, in the absence of
disruption, such parts function as a coordinated, integrated whole. In short,
as an individual organism.
From the perspective of an anthropology of embodiment, discussing
the human organism at this stage as “the embryo” fails to capture its
essential identity. This nomenclature trades in the notion of atomization and
isolation of expressive individualism. It is not “the embryo,” but the
particular human offspring of specific genetic parents. This embryonic
human being emerges from the process of fertilization already embedded in
a web of relationships, most notably involving his or her biological
progenitors—his or her parents. An anthropology of embodiment is mindful
of this connectivity and the obligations and privileges that flow from it that
comprise one dimension of the network of giving and receiving necessary
to human life and flourishing. The relationship of genetic progenitors to the
given embryonic human being conceived is, normatively speaking, that of
parent and child. It would take more discussion and reflection to do justice
to the richness of this relationship and to unfold the contours of obligation
and privilege within this network, but at a minimum, the genetic parents
have an obligation to protect and promote the flourishing of their embryonic
child. How they might discharge this obligation also requires a great deal
more thought and discussion, but the end point of any such pathway of care
would have to be the birth of a child who has a place of belonging as a
genuine son or daughter in a family that loves him or her unconditionally.
The role of the law is to facilitate this end—to help genetic parents to
cultivate their moral imaginations so as to see their child in the embryo in
the dish, and to understand their obligations as parents. Should the parents
fail in this regard, the law must intervene to do what the parents cannot or
will not do—seek a resolution where this embryonic human being
ultimately finds a place of unconditional belonging as a son or daughter in a
loving family. How the law can accomplish this aspiration, and what kinds
of regulatory mechanisms are fitting and appropriate to this end, are a
matter for future consideration.
The conclusion as a matter of principle is that embryonic human
beings, as embodied living members of the species, must be included in the
network of giving and receiving on which all human beings depend for their
survival and their flourishing. Their good must be counted as part of the
common good, and their vulnerability and dependence are a warrant for
protection and support, just as with any other living member of the human
family.
How the law might concretely accomplish this end, which of the
myriad passive and active tools it should deploy toward these purposes, and
what the practice of ART might look like under this new regime are all
matters for a future inquiry. One place to start would be to study the rare
laws in the United States and abroad that offer protection to all participants
in ART through the lens of children and parents. For example, a Louisiana
statute declares such embryonic human beings to be “juridical persons,”
with the attendant privileges and protections owed to such a status.108 It
would be worth knowing whether such a law successfully engenders the
understanding that assisted reproduction is a domain of parents and children
at all stages of the process. Similar provisions designed to protect parents—
genetic, gestational, and rearing—would likewise be worth exploring.
These are inquiries for another time, but they must be pursued if the public
bioethics of ART is to be responsive to the full range of needs and wants of
the embodied beings whose lives are touched by it.
5
Death and Dying
Our discussion so far has focused on the public bioethics concerning the
beginning of life. Now, the inquiry shifts to life’s other margin, namely, the
public bioethics of death and dying. While there are myriad points of entry
into this area of the law, including the definition of death, organ donation,
and medical futility, the analysis that follows will focus on two fundamental
public questions of perennial and crucial import to the law of end-of-life
decision-making: refusal or discontinuation of life-sustaining measures, and
assisted suicide. As in earlier discussions, there is a need for an
anthropological augmentation to the law’s foundations in these matters, for
more humane, just, and fully human governance.
Before proceeding with the analysis, it is necessary first to define some
basic terms for these related but ethically and legally distinct domains. First,
“the refusal or termination of life-sustaining measures” refers to a decision
to decline or discontinue a medical intervention necessary to preserve one’s
life. The decision can be made by the patient herself, or by a proxy
decisionmaker on her behalf in the event that she is not or has never been
competent to do so. The reasons for doing so may vary. Some patients
decline or discontinue life-sustaining measures because they regard the
medical interventions at issue as unduly burdensome or futile. Others may
do so specifically in order to hasten their own death. These motives are
different, even if the result of the decision is the same. In the first case, the
patient is choosing against an unwanted treatment with the foreseeable
(though perhaps regrettable) consequence of an earlier death. In the second
case, the patient is making a choice for the express purpose of hastening
dying, perhaps because she judges her current or near-future quality of life
as unbearable. As will be discussed at more length below, regardless of
one’s motives, it is legal in every state in the United States for a patient to
decline or discontinue life-sustaining measures.
Second, “physician-assisted suicide,” as practiced in the United States,
is the intentional taking of one’s own life through the self-administration of
a lethal drug, prescribed by a physician for these purposes. It is currently
legal in ten U.S. jurisdictions (nine states and the District of Columbia).
Euthanasia is the direct and intentional killing of a patient by a third
party either based on his request or in the name of his best interests.
“Voluntary euthanasia” is the intentional killing of a patient upon his
request. “Non-voluntary euthanasia” is the killing of a patient in the
absence of any request, on the grounds that it is in the patient’s best
interests. “Involuntary euthanasia” is the direct killing of a patient over his
objections, overriding his preferences in the name of a perceived greater
good. All forms of euthanasia are illegal in the United States.
Termination of life-sustaining measures, physician-assisted suicide, and
euthanasia are all distinguishable ethically and legally from the aggressive
use of palliative techniques, such as the administration of powerful pain
medications that carry a serious risk of death for the patient. In such
treatment, the purpose of the clinician is to relieve the pain and suffering of
a living patient through the use of potentially dangerous pain management
techniques and the dosage is adjusted solely to achieve this goal; the aim is
not to hasten his death.
THE REFUSAL OR TERMINATION OF LIFE-SUSTAINING MEASURES
In Cruzan v. Director, Missouri Department of Health, the Supreme Court
(quoting a prior case) noted that “No right is held more sacred, or is more
carefully guarded, by the common law, than the right of every individual to
the possession and control of his own person, free from all restraint or
interference of others, unless by clear and unquestionable authority of law.”
In the United States, the law governing the decision to decline or
discontinue unwanted medical care (including life-sustaining measures) is
generally set forth by the statutes and judicial decisions of the individual
states. It is rooted in the common law of battery, which forbids unwanted
touching by others. Upon this foundation, the law of informed consent was
erected as an additional protection for bodily integrity, specifically in the
context of medical care. As the Supreme Court observed in Cruzan, “the
logical corollary of the doctrine of informed consent is that the patient
generally possesses the right not to consent, that is, to refuse treatment.”1
The first case involving the termination of life-sustaining measures was In
re Quinlan, in 1976.2 In that case, the Supreme Court of New Jersey
declared that there was a right to discontinue such treatment based on the
same right to privacy discerned in the United States Constitution by the
Supreme Court in Griswold v. Connecticut and Roe v. Wade.3
Since then, numerous state courts have recognized the same right to
refuse unwanted treatment, grounding it in the common law of informed
consent alone, or in combination with a right to privacy or self-
determination.
In Cruzan, following a discussion of the common law right to refusal,
the Supreme Court observed, in a conspicuous and atypical use of the
passive voice, that “[t]he principle that a competent person has a
constitutionally protected liberty interest in refusing unwanted medical
treatment may be inferred from our prior decisions.”4 Turning to the
question of whether this “liberty interest” extends to refusal of artificial
nutrition and hydration, the Court again responded with a somewhat
qualified reply that “for purposes of this case, we assume that the United
States Constitution would grant a competent person a constitutionally
protected right to refuse lifesaving hydration and nutrition.”5
Whether grounded in a constitutional liberty interest or the common
law of informed consent, in every jurisdiction in the United States it is
lawful for a competent patient to decline or discontinue unwanted medical
care, including life-sustaining measures. The principle normative
justification is to protect the autonomy and self-determination of patients of
sound mind. This legal framework is not controversial as applied to such
individuals.
Difficulties arise, however, when these legal principles are applied to
patients who are not capable of making decisions for themselves. This was
the context of In re Quinlan, involving a young woman in a “persistent
vegetative state,” a phrase coined in 1972 by Jennett and Plum to describe
“a state of wakefulness without detectable awareness.”6 A Multi-Society
Task Force convened in 1994 to study the matter reported that “the
distinguishing feature of the vegetative state is an irregular but cyclic state
of circadian sleeping and waking unaccompanied by any behaviorally
detectable expression of self-awareness, specific recognition of external
stimuli, or consistent evidence of attention or intention or learned
responses.”7 Such patients may move, smile, cry, moan, or scream, but these
actions are, according to the diagnosis, not purposeful or evidence of
psychological awareness. Patients in a persistent vegetative state are thus
unable to make treatment decisions on their own behalf.
In Quinlan, the Supreme Court of New Jersey held that the patient’s
right to privacy (which includes the freedom to decline unwanted life-
sustaining measures) should not be extinguished simply because of
cognitive disability.8 The Court allowed the patient’s father, acting as
guardian, to make a decision on her behalf that, in his best judgment, she
would have made for herself if she were able to do so. Accordingly, it
authorized her father to direct the withdrawal of her ventilator, subject to
confirmation by the physician and hospital ethics committee that Karen
Quinlan had no hope of being restored to a “cognitive, sapient state.”9
Ventilation was discontinued, but to the surprise of everyone, Karen Ann
Quinlan continued to breathe on her own and survived another ten years.10
Since Quinlan, in jurisdictions throughout the United States, courts and
state legislatures have embraced the notion that the right to decline life-
sustaining measures can be exercised on behalf of patients who no longer
have the capacity to decide for themselves. While the details of the laws
vary somewhat, the common thread is that the patient’s actual prior wishes,
if discernable, are paramount. If there is decisive written or oral evidence
that expresses the patient’s preferences for the circumstances at issue, then
they are to be implemented. Courts also allow for proxy decisionmakers,
under the auspices of a “substituted judgment” standard to make a decision
about what the patient would have wanted based on his expressed wishes,
values and opinions, and any other evidence indicating what treatment he
would choose or decline under the circumstances. Because the goal is to
vindicate the patient’s autonomy and self-determination, this is meant to be
a purely subjective inquiry. As one Florida state court explained:
One does not exercise another’s right of self-determination or
fulfill that person’s right of privacy by making a decision which
the state, the family, or public opinion would prefer. The surrogate
decision-maker must be confident that he or she can and is voicing
the patient’s decision.11
In the interest of ensuring that the preferences implemented are truly
those of the patient, and to avoid possible fraud, mistake, or abuse, many
jurisdictions require those seeking to terminate life-sustaining measures for
incompetent patients to prove by “clear and convincing evidence” that this
is what the patient wanted under the circumstances. This is the highest
standard of proof in American civil law and is tantamount to “beyond a
reasonable doubt” in the criminal context. The Supreme Court held in
Cruzan that such a requirement does not violate the incompetent patient’s
constitutionally protected liberty interest in declining unwanted life-
sustaining measures.12
If it proves impossible to determine what the patient’s actual wishes
were prior to losing the capacity to decide for himself, some jurisdictions
allow for treatment decisions to be made according to a “best interests”
standard. Unlike the “substituted judgment” approach, which is meant to be
subjective and entirely tailored to the patient’s preferences, the “best
interests” standard is meant to be objective, implementing what a
reasonable person would choose under the circumstances. If there is any
probative evidence of the patient’s preferences, it is incorporated into the
calculus. If not, the decision is made by weighing benefits and burdens
under a reasonableness standard. For example, in the absence of any
evidence of the patient’s wishes, the New Jersey Supreme Court in In re
Conroy proposed a “pure-objective standard,” under which life-sustaining
measures should be terminated when it is demonstrated that “the net
burdens of the patient’s life with the treatment … clearly and markedly
outweigh the benefits that the patient derives from life,” and the patient is
subject to “recurring, unavoidable and severe pain” rendering the
continuation of life sustaining treatment “inhumane.”13
Similarly, the President’s Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research suggested
the following framework for discerning “best interests” in this context:
In assessing whether a procedure or course of treatment would be
in a patient’s best interests, the surrogate must take into account
such factors as the relief of suffering, the preservation or
restoration of functioning, and the quality as well as the extent of
life sustained. An accurate assessment will encompass
consideration of the satisfaction of present desires, the
opportunities for future satisfaction, and the possibility of
developing or regaining the capacity for self-determination.14
Under both the “substituted judgment” and “best interests” standards, if
the party seeking to discontinue life-sustaining measures fails in its burden
of proof, such treatment is continued for the incompetent patient.
In actual clinical practice, nearly all decisions regarding life-sustaining
measures are made by families in private deliberation and are never subject
to litigation and the publicity that comes with it. It is only in the rare
instance where family members or caregivers disagree so strongly that they
seek a resolution through the courts and the court of public opinion.
Nevertheless, worries about such disputes over life sustaining measures
have motivated a widespread public campaign to encourage people to
memorialize their treatment preferences in legal instruments to be used to
govern their medical care in the event of their future incompetence.
Now every state has laws providing for the creation of some form of
“advance directive,” meant to guide life-sustaining treatment decisions after
the individual loses the capacity to do so, and likewise to excuse health care
providers who follow such directives from legal liability. In 1990, Congress
passed the Patient Self-Determination Act (PSDA), requiring health care
facilities that receive Medicare or Medicaid funds to give patients under
their care information about advance directives deemed valid under state
law.15 If such patients have an advance directive, this must be noted in their
medical records. These advance directives can take a variety of forms.
Instruction directives are written or oral declarations about future treatment
preferences, including end-of-life decision-making. A proxy directive (often
called a health care power of attorney) designates a person who can make
medical decisions in the event the patient becomes incapacitated. Living
wills are written instruments that seek to provide instructions for medical
care (including termination of life-sustaining measures) when the patient
can no longer decide for himself.
According to the President’s Council on Bioethics, “[t]he idea of the
living will has been enthusiastically endorsed not only by Congress and the
courts, but also by state legislatures, the Veteran’s Administration, medical
and legal associations, doctors, lawyers, ethicists, and patient advocacy
organizations.”16
THE ANTHROPOLOGY OF THE LAW OF LIFE-SUSTAINING MEASURES
Just as for the law of abortion and assisted reproduction, the anthropology
of the law of life-sustaining measures emerges from first considering the
goods it means to advance. The primary good that decisively orients the
legal framework is autonomy. It single-mindedly seeks to advance the good
of being free from unwanted bodily intrusion. Some state courts—referring
specifically to abortion jurisprudence—style it as the good of privacy.
Others have described it as the “right to possession and control of one’s
person” or the “right to be left alone.”
The form of autonomy conferred on patients by the law of end-of-life
decision-making is the freedom to shape their life’s narrative, to construct a
conclusion that reflects their own self-understanding, and to convey this
meaning to others by the choices they make. Legal philosopher Ronald
Dworkin wrote that people “want their deaths, if possible, to express and in
that way vividly confirm the values they believe most important to their
lives.”17
Thus, the image of the flourishing person that lies beneath the legal
mechanisms of this domain is the solitary individual seeking to assert his
will in the face of mortality and suffering, to make a final existential choice
that will express his deeply held views about the meaning and value of his
life and how to live it. This is the protagonist of expressive individualism,
authoring the last chapter of his self-constructed story.
As applied to a patient of sound mind, competent to make his or her
own treatment decisions, this is a mostly uncontroversial anthropological
grounding for the law. To be sure, it fails to account for the diminished
agency that comes with suffering, the more complex array of preferences
and desires of patients in this context, and the web of other people affected
by such decisions. But given the intimate, delicate, and highly personal
nature of these choices, there are good prudential reasons to keep the
intrusive machinery of the state from interfering with decision-making by
competent patients to reject undesired care. Concerns about fraud, abuse,
and duress are less grave when a patient can reflect, deliberate, and decline
unwanted medical interventions in his or her own voice. Forcing medical
care on competent patients against their wishes runs contrary to well settled
and widely shared principles of American law and medical ethics.
However, the anthropology of expressive individualism becomes
highly problematic when illness or injury has silenced the patient or
otherwise rendered her incompetent to make decisions regarding life-
sustaining measures. The person as an atomized unencumbered will seeking
its own path forward does not match the lived embodied reality of profound
vulnerability and dependence of debilitating injury and illness that leaves
one unable to reflect and make life and death choices.
And yet, expressive individualism remains the anthropology of the law
in these circumstances. The law insists on the fiction that it is possible to
exercise autonomy and self-determination once the ability to formulate or
express a decision regarding life-sustaining measures is irretrievably lost. It
falsely equates the current exercise of autonomy with binding a now-
incapacitated patient to previously expressed wishes, either by operation of
a living will or by reconstructing his intentions by recalling less solemn
forms of communication. To borrow the words of the President’s Council
on Bioethics, the law’s mechanisms of end-of-life decision-making for
incompetent patients rest on the anthropological premise that “each
individual [can] remain—by this ‘remote control’—a self-determining
agent, even when he can no longer directly or contemporaneously
determine his own fate.”18
The shortcomings of a legal strategy rooted in autonomy and self-
determination for profoundly vulnerable, dependent, and cognitively
impaired patients dependent upon life support becomes clear in light of the
frustrated aspirations of the nationwide campaign for the living will. Putting
aside the fact that only about a quarter of people in the United States have
living wills, there is good reason to believe that even for those that do, it is
not effective as the sole means to govern end-of-life decision-making once
competence is lost.19 The President’s Council on Bioethics, reviewing the
social science evidence analyzed by Amy Fagerlin and Carl Schneider,
found that many people surveyed preferred to let proxy decisionmakers
have leeway to make choices on their behalf.20 Vulnerable people facing the
possibility of life’s end do not seek to assert their unencumbered wills. They
want help from those who love them or from experts committed to caring
for them.
Moreover, “most people find it difficult to accurately predict their
preferences ‘for an unspecifiable future confronted with unidentifiable
maladies with unpredictable treatments.’ ”21 A meta-analysis of multiple
studies showed that large percentages of people routinely change their
preferences regarding life-sustaining measures in a relatively short period of
time.22 This difficulty for strategies of legal “precommitment” becomes
especially acute when the young and healthy try to imagine how and
whether they would find meaning in a much-diminished state due to
disease, injury, or senescence. The President’s Council noted that there is
“an extensive body of research on how poor we are at predicting our own
preferences and desires, especially in regard to choices far off in the
future.”23
Moreover, living wills as drafted are often either underinclusive
regarding possible future scenarios or are so overbroad that they do not
provide sufficiently concrete guidance.
Schneider and Fagerlin do not blame this problem on poor drafting, but
rather the nature of the task itself, namely, trying to predict a highly
complex and variable future. Even more problematic is that studies have
shown that patients themselves are ambivalent about whether their
instructions should be precisely followed.24
Some studies have indicated that living wills do not meaningfully
improve the accuracy of proxy decisionmakers in predicting the actual
preferences of patients. According to the President’s Council on Bioethics:
Strikingly, what the researchers found in this study was that,
compared to the control group, none of the interventions produced
significant improvement in the accuracy of the surrogates’
judgment in any illness scenario or for any medical treatment.
When spouses or children of elderly patients made surrogate
“decisions” about medical treatment based only on their familiarity
with the patient, their judgments were just as accurate as that of
spouses and children who had read or read and discussed a detailed
living will drawn up by the patient.25
In addition to these concerns, there are problems with holding a now-
incompetent patient to past choices to decline life-sustaining measures
made when young and in the peak of health. The current patient can no
longer revise these choices, even if he derives value from life in his
diminished state. The difficulty is illustrated by the hypothetical case of
“Margo,” derived from Andrew Firlik’s account of an Alzheimer’s patient
suffering from dementia who was quite content with her life of visiting with
friends whose names she could never recall, drawing the same picture, and
listening to the same songs.26 Ronald Dworkin suggested that if Margo had
previously executed a living will categorically refusing life-sustaining
measures in the event of dementia, should she now contract pneumonia, she
should be denied life-saving antibiotics. He argued that to provide
antibiotics in this scenario would be to engage in an “unacceptable form of
moral paternalism,” and a violation of the patient’s desire to shape the
conclusion of her life’s narrative in a manner consistent with her self-
understanding.27 Rebecca Dresser, however, pierces the fiction that this is a
valid exercise of self-determination for the patient Margo is now: “A policy
of absolute adherence to advance directives means that we deny people like
Margo the freedom we enjoy as competent people to change our decisions
that conflict with our subsequent experiential interests.”28
While it is not clear what would happen in a real case involving a
patient like Margo, the law’s preferred approach as a general matter is to
bind now-incompetent patients to choices previously expressed either
formally through a living will or informally through oral statements and
behaviors deemed sufficient to indicate past preferences. But by doing so
the law ignores the embodied reality of the profound vulnerability and
dependence of the person suffering under the yoke of debilitating cognitive
impairment and instead projects onto him a false image of an intact mind
and will. At a time when a person is most fragile and dependent on the care
of others for basic needs, the law elevates freedom and self-determination
as its animating goods. In a moment when the patient cannot speak for
himself, the law insists that his voice be heard and heeded. The single-
minded focus on autonomy, grounded in the anthropology of expressive
individualism thus renders the law unable to respond fully to the unique
needs of this stage of life.
What is needed, therefore, is a legal approach rooted in an
anthropology of embodiment. Such an approach understands that because
persons are bodies, the living patient diminished by injury, illness, or
senescence is the same person who, when younger and healthier, expressed
views about the appropriate use of life-sustaining measures. To honor the
person, those views should be honored, but so too should be the needs of
the patient he has now become. An anthropology of embodiment would
reject here (as it did in the contexts of the beginning of life) the distinction
that some draw between living human beings and human “persons” based
on cognitive capacity. The patient whose cognition has been irretrievably
lost does not likewise lose her personhood. The life cycle of the person
even in the very best of circumstances is marked by radical dependence at
the beginning of life, development of one’s bodily powers as well as
cognition and will, followed by a decline into dependence and vulnerability
once again.
An anthropology of embodiment recognizes this “scale of disability” as
the nature of life humanly lived—the pathway of all persons.
Caring rightly for an incompetent person dependent on life-sustaining
measures requires thinking carefully about previously expressed
preferences, but it does not end there. It requires a prudential weighing of
present needs and circumstances in all their complexity. And this should
occur, as in all cases of profound human dependence throughout life’s
cycle, in networks of uncalculated giving and graceful receiving. This, as
elsewhere, requires the practice of the virtues of just generosity, hospitality,
and especially accompaniment in suffering (misericordia). The focus of care
must be the patient who presents herself, in all her neediness and
vulnerability. Care should not be given according to some idealized
standard of how we remember her in the past or how we might wish her to
be. Nor should care depend on her inability to become again what she once
was. Our care is determined by the patient as she is now.
What, then, might a public bioethics of life-sustaining measures look
like when augmented by the anthropology of embodiment? Here, as in
previous chapters, there are only general principles on offer, with the
working out of details deferred to the future.
The first principle is that the law should respond to the unique
vulnerability and dependence of this context by strengthening and
supporting the networks of giving and receiving necessary to care for such
patients. Following the recommendation of the President’s Council on
Bioethics, the law should encourage the creation of proxy directives,
naming those who can make decisions in the event of future circumstances
of incompetency. The proxy should carefully consider the preferences
expressed by the patient in the past, but also take into account the
complexity of present circumstances and the needs of the patient as he
currently is. This approach integrates both the good of self-mastery that
reflects the freedom and particularity of individuals, as well as the
acknowledgement of dependence that is part of every embodied being’s
story. In the words of the Council:
The proxy directive does not ignore the significance of our desire
to participate (in advance) in shaping treatment decisions made for
us at a time in the future when we can no longer participate
concurrently. Precisely by naming someone to serve as our proxy,
we take that desire seriously. At the same time, however, this
approach emphasizes less the importance of self-determination and
correspondingly more the importance of solidarity and
interdependence. It invites us to move toward our final days and
years not in a spirit that isolates our free decisions from the
networks of those who love and care for us but, instead, in a spirit
that entrusts our dying to those who have supported us in our
living. It enlists them to stay by our side, to the very end.29
The proxy must resist the temptation to project his own judgment about
quality of life, viewed from his perch as an able-bodied and healthy
individual. There is a natural temptation to look at those in a diminished
state and conclude that theirs is a life not worth living. But if we are
demonstrably bad at predicting how we ourselves might derive meaning
and joy in a state of disability, we are even worse at judging how others
might do so. The temptation to alleviate suffering or disability by
eliminating the patient must be resisted. The President’s Council offers a
useful framework for avoiding this well-meaning and paternalistic but
ultimately misguided judgment about a life not worth living. The proxy
decisionmaker should focus on the medical intervention under
consideration. Declining a treatment because it itself is unduly burdensome
or futile is different from doing so for the purposes of hastening the end of a
life judged by the proxy to be of low quality. Refusing or terminating an
unduly burdensome or futile treatment on behalf of an incompetent patient
is a choice for a different, perhaps shorter life. It is not a choice for death.
Proxies are less likely to project their own preferences on to the patient
in their charge if they remain focused on the intervention at issue, not her
underlying condition. Of course, fleshing out the meaning of “burden” and
“futility” requires a great deal of fact-bound thought and reflection that is
better left to a future inquiry.
For those without family or friends, the law must fill the gap in the
network of giving and receiving on which the vulnerable depend. As the
Council advises, “[w]e should not too readily acquiesce in a vision that
isolates us in the time of our dependency, or a vision that rests on the false
notion that individuals can precisely determine and manage every fact of
their lives until the very end.”30 The law should here, as elsewhere, work to
shore up the networks of giving and receiving throughout society such that
the goods of friendship and solidarity will be practiced and well developed,
and thus ready to respond to the most pressing crises of care.
ASSISTED SUICIDE
The final “vital conflict” to be examined is the law concerning assisted
suicide. While the vast majority of states do not permit assisted suicide and
the American Medical Association remains opposed to it, the campaign to
legalize the practice appears to have grown in momentum with the passage
of laws in seven jurisdictions since 2013. Just as with the other legal
frameworks discussed in the preceding pages, this impoverished
anthropological foundation renders the law incapable of responding to the
full range of neediness of this context, and threatens the especially
vulnerable and dependent, who are invisible from expressive
individualism’s narrow angle of vision. As before, these defects emerge
from analyzing the law itself to discern the goods it is meant to serve, and
to uncover its underlying premises about human identity and flourishing.
At common law, conventional suicide was a crime punishable by
confiscation of the decedent’s movable goods (though not real property, as
in Roman Law). In America during the pre-revolutionary years, it was
punished with forfeiture of property and in some cases “ignominious
burial,” to dishonor the remains of the suicide. Gradually, however,
Americans came to see such punishments as unfair to survivors, and unjust
to those who commit suicide, as they grew to appreciate that the close
relationship between mental illness and suicide diminished the culpability
of those who take their own lives.
Accordingly, suicide itself was decriminalized throughout the United
States. However, the law continued to regard suicide as a grave harm to be
prevented and deterred. The law retained procedures for involuntary civil
commitment and other restrictive mechanisms to prevent suicide. Assisting
another in suicide remained illegal.
Then in 1994 by referendum the state of Oregon adopted the Death
with Dignity Act, legalizing assisted suicide and regulating its practice.31
After litigation, the law went into effect in late 1997. The state of
Washington followed suit in 2008 and legalized assisted suicide by
referendum.32 In 2009, the Montana Supreme Court declared that assistance
in suicide is not prohibited by its extant state law.33 Led by Compassion and
Choices, the principal advocacy organization for assisted suicide, there have
been a number of initiatives to legalize the practice that have succeeded in
seven additional jurisdictions including Vermont (2013), California and
Colorado (2016), Washington, D.C. (2017), Hawaii (2018), and New Jersey
and Maine (2019).34 This brings the total number of U.S. jurisdictions
where assisted suicide is legal to ten (including the District of Columbia).
By contrast, since 1997 eleven states have explicitly banned assisted
suicide, and efforts to liberalize existing bans have foundered in others
(most notably in Massachusetts in 2012).35
In 1997, in the companion cases of Washington v. Glucksberg and
Vacco v. Quill, the U.S. Supreme Court declared that state laws banning
assisted suicide do not violate the United States Constitution.36 The right to
assisted suicide is not protected by the Due Process Clause as it is neither
“objectively, deeply rooted in the Nation’s history and tradition,” nor is it
“implicit in the concept of ordered liberty” such that “neither liberty nor
justice would exist if the right were sacrificed.”37 The Court further held
that laws banning assisted suicide do not violate the Equal Protection
Clause of the Fourteenth Amendment, distinguishing the freedom of
patients to refuse intrusive, unwanted medical care from the right to
affirmatively take their own lives with the aid of a physician.38 The Court
concluded that banning assisted suicide is a rational means to advance
legitimate state interests, namely, protecting life generally, preventing
suicide, safeguarding the integrity of the medical profession and the role of
physicians as healers, protecting the vulnerable, poor, elderly, marginalized,
and disabled from neglect, abuse, mistakes, bigotry, and pressures to end
their own lives, and preventing a move towards direct mercy killing
(euthanasia).39
More recently, two state courts of last resort in New Mexico (Morris v.
Brandenburg 2016) and New York (Myers v. Schneiderman 2017) reached
similar conclusions in analyzing claims under their state constitutions.40 The
Supreme Court of New Mexico rejected the claims by plaintiffs that the
state interests cited in Glucksberg and Quill were based on worries that had
proven false in the intervening years.41 The Court pointed to more recent
consideration and renewal of these concerns by the New Mexico legislature
as recently as 2015.42
Today advocates and opponents of assisted suicide alike perceive that
efforts to legalize the practice are advancing. All the laws proposed and
adopted are based on the paradigm of Oregon. Thus, it offers an excellent
framework for analyzing the anthropological premises of assisted suicide
laws in America more broadly. As shown below, the vision of the person
and flourishing that underwrites Oregon’s law and those modeled upon it is
expressive individualism.
The Oregon law authorizes physicians to prescribe a lethal dose of
drugs to terminally ill adult Oregon residents, so they may self-administer
them for the purpose of ending their lives. The law states that it does not
authorize euthanasia.43 Death by means of assisted suicide is not defined as
“suicide” under Oregon law and death certificates list only the underlying
terminal illness as the cause of death.44 Terminal illness is defined as a
malady that will produce death in six months or less, but the law does not
specify whether this prognosis distinguishes life expectancy with treatment
versus without it.45 Competency under the law is defined as “the ability to
make and communicate health care decisions.”46
To obtain a prescription, eligible patients are required to make two oral
requests of a physician (it need not be the same person) separated by at least
fifteen days.47 Recently, the state enacted a waiver provision for cases where
the doctor believes that the patient might die during the waiting period. The
patient must also issue a written request, signed by two witnesses (though
there are no significant restrictions on who these might be).48 Two
physicians—one prescribing and one consulting—must confirm the
diagnosis, prognosis, and capability of the patient to make the request. If
either physician believes that the patient’s judgment is impaired by a
psychiatric or psychological disorder, he will refer him for evaluation.49
There is no mandatory psychiatric or psychological assessment of patients
seeking prescriptions.50 The prescribing physician must advise the patient of
alternatives including comfort care, hospice care, and pain control. There is
no requirement that the prescribing physician have expertise in any of these
fields.51 The physician may request (though must not require) that the
patient advise family or next of kin of the request for prescription.52 Such
physicians are frequently members or affiliates of Compassion and Choices;
there is a limited number of doctors in the state willing to prescribe lethal
medications.53 Once the prescription is issued, there is no requirement that
any health care professional be present for the administration of the lethal
dose. Physicians are immunized from liability if they are found to have
made a “good faith” effort to comply with the law—a significantly more
permissive standard than the usual framework for malpractice.54
Since 1998, 1,459 people have taken their own lives under the Death
with Dignity Act.55 The number of patients ending their lives under the law
has steadily increased, doubling from the four-year period of 2008–2012 to
2013–2017.56 Data is provided to the Oregon Health Authority by
prescribing physicians; the state does not have funding or a mechanism to
validate or audit such reports. Original reports are destroyed once the state
reports its aggregated annual data.57 One state official famously noted that
the Oregon Health Division has no enforcement role and cannot verify the
reports they receive from physicians who participate in the regime
established by the Death with Dignity Act.58
THE ANTHROPOLOGY OF ASSISTED SUICIDE LAWS
As before, the inductive analysis of the law focuses first on the goods it
seeks to advance, and then the underlying assumptions of human identity
and flourishing on which such goods are premised. The twin goods invoked
to support laws such as Oregon’s Death with Dignity Act are autonomy and
compassion. These aspirations are linked in the very name of the nation’s
leading assisted suicide advocacy organization: Compassion and Choices.59
The law is meant to allow the exercise of self-determination in the face
of a terminal illness, to choose the time and manner of one’s demise. An
array of famous American moral and political philosophers—Ronald
Dworkin, John Rawls, Robert Nozick, Thomas Nagel, Thomas Scanlon,
and Judith Jarvis Thomson (of the famous violinist analogy discussed in
Chapter 3)—filed an amicus brief to aid the Supreme Court in its
consideration of Washington v. Glucksberg and Vacco v. Quill.60 The
“Philosopher’s Brief,” as it was called, was also published in The New York
Review of Books. It invoked the precedent of Planned Parenthood v. Casey
for a broad individual right of self-determination in making the most
intimate and important personal choices. The choice of how and when to
die, the brief argued, was a pristine example of such a self-defining
decision:
Most of us see death—whatever we think will follow it—as the
final act of life’s drama, and we want that last act to reflect our
own convictions, those we have tried to live by, not the convictions
of others forced on us in our most vulnerable moment.61
Seventeen years later, the face of the campaign for assisted suicide
became Brittany Maynard, a beautiful and dynamic young woman in her
twenties who moved to Oregon to take her own life following a diagnosis of
terminal brain cancer. She spoke passionately about the freedom to choose
the timing and manner of her death, and to avoid the pain and decline of her
disease. She situated this choice in the larger context of the freedom to
pursue the life of one’s dreams: “The reason to consider life and what’s of
value is to make sure you’re not missing out. Seize the day. What’s
important to you? What do you care about? What matters? Pursue that,
forget the rest.”62 The executives of Compassion and Choices were elated to
have such an appealing spokeswoman for the right to assisted suicide. They
created ad campaigns and websites including such slogans as “My life. My
death. My choice. I support Brittany Maynard and all Americans’ right to
choose #DeathwithDignity.”63 This campaign was influential in the
successful push to legalize assisted suicide in California, Maynard’s home
state.
Alongside the freedom to exercise autonomy in shaping the timing and
manner of one’s death, advocates cite compassion for the suffering as the
second core animating good of assisted suicide legalization. They invoke
compelling images of patients suffering from excruciating and refractory
pain, which only ends in death. Assisted suicide is thus justified as a
compassionate option for those with intolerable suffering to end the pain by
ending their lives with the assistance of a physician.
These are compelling arguments, vividly argued. To one who is
anticipating a life of decline, pain, and death, the image of the solitary
individual imposing the rational mastery of his will on these dire
circumstances—at once exercising his fundamental freedom, using it to
author the ending to his life’s story with the integrity and coherence of his
self-understanding, and in so doing, avoiding an undignified and painful
decline—might be appealing. It is an image of freedom, choice, and dignity
that resonates deeply with rugged American individualism and Romantic
expressivism.
But it is a vision that is deeply forgetful of the body, and the profound
vulnerability and dependence faced not only by the patients who choose
assisted suicide, but also the vulnerable populations who live in
jurisdictions that have embraced the law, ethics, and culture of assisted
suicide.
CRITIQUING AND REFORMING THE LAW OF ASSISTED SUICIDE
The anthropology of expressive individualism fails to account for the
diminished agency at the margins of life for an embodied being in time,
overstates the possibility of autonomy in this setting, and underestimates the
risks of systemic neglect, fraud, abuse, mistake, and coercion in a legal
regime that allows assisted suicide. Accordingly, the law in Oregon (on
which other similar state laws are modeled) fails to adopt crucial safeguards
to protect the fragile, needy, elderly, poor, stigmatized, and disabled from
such threats. Indeed, just as in the previous contexts discussed in the
preceding pages, such vulnerable persons are absent from expressive
individualism’s field of vision. Moreover, the data from Oregon, sparse
though it is, undercuts the view that assisted suicide is a panacea for
patients with intractable and excruciating pain.
First, the law in Oregon does not take account of the strong correlation
between mental illness, especially treatable depression, and suicidal
ideation and desires. There is a large body of social science evidence that
shows a supermajority of persons with suicidal ideation suffer from mental
illness, including a clear majority suffering from treatable depression. A
review of the medical literature showed that “[t]he incidence of suicide in
someone with a cancer diagnosis is approximately double the incidence of
suicide in the general population.”64 For cancer patients, depression was
“the major risk factor for suicidality” and such patients “were 4 times more
likely to have a desire for hastened death … compared with those patients
without depression (47 percent versus 12 percent).”65 The National Cancer
Institute also noted a strong correlation between cancer patients suffering
from depression and the false sense that they were a burden to their loved
ones.66 Moreover, another study on suicidal ideation in the elderly noted
that “[a] universal finding is the strong association with psychiatric illness,
particularly depression.”67 It concluded that “the fact that there is a high
prevalence of potentially treatable psychiatric illness in those elderly people
who have both physical illness and suicidal ideation should be central in
any discussion of physician-assisted suicide.”68
These studies are highly relevant to assessing whether patients in
Oregon are capable of the sort of autonomy the law assumes. Seventy-six
percent of patients who have died by assisted suicide in the state suffered
from cancer, and the median age of all patients was seventy-two.69 Yet there
is no mandatory screening for psychiatric illnesses that might compromise
the self-determination of those who request prescriptions to end their lives.
Consulting or prescribing physicians are required to order such evaluations
only when they feel that a psychiatric condition might impair the judgment
of the patient.70
The brute numbers confirm without doubt that the physicians
administering Oregon’s Death with Dignity Act do not regard depression as
ever impairing judgment. To wit, in 2018 less than 2 percent of patients
were referred for psychiatric or psychological evaluation, despite the fact
that the incidence of depression among cancer patients and the elderly
expressing suicidal desires is orders of magnitude higher.71 And there is no
information regarding what happened following such consultations—this
data is not gathered or reported. It is possible that the small number of
physicians in Oregon who participate in the Death with Dignity Act are not
able to recognize depression in their encounters with patients. Only 28
percent of Oregon physicians surveyed indicated they feel confident to do
so.72 In any event, all indications are that patients suffering from treatable
depression—a major but reversible factor in formation of suicidal desires—
are regularly being prescribed lethal drugs. This raises serious questions
about the reality of the “autonomy” of the patients assumed by the law. Yet
later laws modeled on Oregon’s have loosened these standards further. For
example, in New Jersey and Colorado any psychological evaluation is
designed not to discover a depression or other condition that may impair
judgment, but only to determine that the patient can absorb information or
communicate a decision, regardless of whether his or her judgment is
impaired; in New Jersey and Hawaii the evaluation may be done by a
clinical social worker instead of a psychologist or psychiatrist.
Most worrisome of all is that there is no requirement to assess
voluntariness or competence at the time the patient ingests the lethal drugs.
The median length of time between first request and death is forty-seven
days.73 Indeed, there is no obligation at all for a physician to attend the self-
administration of the drugs. Unsurprisingly, since 1998 the prescribing
physician was confirmed to be present at the time of death in only 15
percent of cases.74 As a result, Oregon has very little information on
complications that arise during self-administration; in 53 percent of cases
since 1998 this information is coded as “unknown.”75 Thus, there is simply
no rigorous, systematic, and verifiable way to know anything about the state
of mind of the vast supermajority of Oregon patients when they self-
administered lethal drugs to take their own lives.
There is additional evidence that the patients in Oregon are not
choosing to die free from internal pressures. In 2018, 54 percent of patients
who obtained prescriptions reported that they were seeking to end their
lives because they perceived themselves as a burden to family and friends,
the highest percentage recorded since 1998.76 Sixty-eight percent of patients
had insurance or received it solely from government sources—Medicare
and / or Medicaid.77 The percentage of patients on government insurance
doubled from 2008–2012 to 2013–2017.78 These programs fully cover “aid
in dying,” but under Oregon’s Medicaid rationing plan have payment caps
on other possible life-saving interventions.79
The argument that assisted suicide is a necessary and humane response
to the intractable suffering of terminally ill patients is somewhat belied by
the evidence, scant though it is. For one thing, unlike in Europe, intolerable
suffering is not a prerequisite for eligibility for assisted suicide. The
threshold condition is a diagnosis of “terminal illness,” though this is a
famously difficult prediction to make.80 Only 26 percent of respondents in
2018 reported that “inadequate pain control or concerns about it” motivated
them to pursue a lethal prescription. This number has remained relatively
stable since 1998.81 By far the most common rationales cited for seeking
assisted suicide were concerns about “losing autonomy” (92 percent) and
being “less able to engage in activities making life enjoyable” (91
percent).82
For those terminally ill patients who are in intractable pain, there is no
requirement that the consulting or prescribing physicians who administer
the Death with Dignity Act have expertise or even minimal qualifications to
evaluate pain or propose a plan for pain management. As a result, they are
severely compromised in their ability to identify and clearly explain to
patients the options for pain management or palliative care that could offer
an alternative to assisted suicide. In this way, the law does not empower the
autonomy of patients, nor does it respond fully to their suffering.
There is evidence that some jurisdictions that have legalized assisted
suicide make less use of hospice care as a general matter. Oregon made
major strides in developing hospice programs prior to legalizing assisted
suicide, but since legalization its hospice utilization has fallen behind the
national average rate of use.83 Washington, Montana, and Vermont—states
that have also legalized assisted suicide—likewise fall below the national
average in hospice utilization rate.84
Concerns about diminished autonomy and lack of meaningful
safeguards against neglect, fraud, abuse, duress, and mistake are amplified
for vulnerable populations such as the disabled, the elderly, the
marginalized, and the poor. In 1994, the New York Task Force on Life and
Law, an advisory body to Governor Mario Cuomo, put the problem thus:
We believe that the practices [of assisted suicide and euthanasia]
would be profoundly dangerous for large segments of the
population, especially in light of the widespread failure of
American medicine to treat pain adequately or to diagnose and
treat depression in many cases. The risks would extend to all
individuals who are ill. They would be most severe for those
whose autonomy and well-being are already compromised by
poverty, lack of access to good medical care, or membership in a
stigmatized social group. The risks of legalizing assisted suicide
and euthanasia for these individuals, in a health care system and
society that cannot effectively protect against the impact of
inadequate resources and ingrained social disadvantage, are likely
to be extraordinary.85
These worries have been acknowledged by the Supreme Court (in
Glucksberg and Quill) in 1997, and by the courts of last resort in New
Mexico and New York in 2016 and 2017, respectively, despite claims that
such worries have proven unfounded. There is simply no rigorous,
verifiable system of data collection to gather sufficient information to rule
out these concerns. Moreover, the absence of any requirements in the law of
Oregon (and those modeled upon it) that there be mandatory evaluation for
relevant psychiatric or psychological conditions, that voluntariness and
competency be assessed at the time the lethal drugs are ingested, that there
be consultation with next of kin, or that anyone be present at the time of
ingestion and death, opens the door to all manner of fraud, abuse, duress,
coercion, mistake, or even homicide. In short, the Oregon law’s failure to
take seriously the dependence, fragility, and diminished agency of
embodied beings in the grip of terminal illness poses potentially grave risks
for a wide circle of vulnerable people.
The logic of autonomy and compassion that animates the Oregon laws
does not contain limiting principles sufficient to restrict the law to a regime
of assisted suicide only for the terminally ill. Instead, the full and coherent
embrace of these twin normative principles point to the acceptance of direct
killing by euthanasia, for any reason, including in the absence of a request.
For example, it does not fully respect the autonomy of a patient nor is it
compassionate to deny him access to aid in dying because of his reasons for
seeking it (for example, because he is not terminally ill). It is not
compassionate, nor does it honor his freedom to allow only oral self-
administration of lethal drugs as the sole means to end his life. Some
patients are not capable of taking drugs orally. Similarly, it is not
compassionate to deny aid in dying to those patients, including children and
the cognitively disabled, who are not able to make the request on their own
behalf. Thus, in countries such as Belgium and the Netherlands, the practice
has moved inexorably from assisted suicide to euthanasia and from
voluntary to nonvoluntary, allowing, for example, the direct killing of
infants under the Groningen Protocol.86 Moreover, the reasons for
euthanasia have expanded rapidly to encompass autism, depression, and
even the claim one’s life seems “meaningless.”
There are already proposals to liberalize the Oregon law further, to
relax the definition of “terminal illness” to embrace a very wide array of
conditions, to expand the definition of “self-administer” to include other
delivery systems besides oral ingestion, and to allow health care providers
aside from physicians to make prescriptions.87
Vulnerable communities have expressed deep concerns about the risks
imposed by legalization of assisted suicide. Organizations that advocate for
the rights of the disabled have been especially resistant to legalizing
assisted suicide on the grounds that it promotes a social attitude that lives
characterized by diminished physical or cognitive functioning are worse
than death. Such advocates worry about assisted suicide laws enhancing
already entrenched attitudes of bigotry and discriminatory practices towards
the disabled. But even more frightening is the prospect of disabled persons
being pressured subtly or overtly to end their lives.88
Relatedly, many physicians and the American Medical Association
itself have opposed legalization of assisted suicide on the grounds that it
would transform medicine from a healing art to its opposite and sow doubt
and mistrust between doctors and patients. The AMA cautioned against the
temptations that it might pose to doctors: “Health care professionals also
experience great frustration at not being able to offer the patient a cure. For
some, the ability to offer the patient the ‘treatment’ of assisted suicide may
provide a sense of ‘mastery over the disease and the accompanying feelings
of helplessness.’ ”89 Columbia University psychiatrist Paul Applebaum has
expressed the worry that assisted suicide will remove incentives to treat
difficult cases: “Will psychiatrists conclude from the legalization of assisted
death that it is acceptable to give up on treating some patients?”90
Conversely, he is concerned that the advent of assisted suicide might risk
“inducing hopelessness among other individuals with similar conditions and
removing pressure for an improvement in psychiatric and social services.”91
ANTHROPOLOGY OF EMBODIMENT AND TERMINAL ILLNESS
Drawing implicitly upon the anthropology of expressive individualism, the
law of assisted suicide offers the freedom of the atomized individual will in
response to the vulnerability, dependence, fragility, and natural limits of
embodied life as it nears its end. What it offers concretely is the freedom to
choose self-annihilation as a mechanism to control the conclusion of life’s
narrative. But because the law fails to grasp the diminished agency of a
human being whose body is dying, the framework it offers is rife with risks
of fraud, abuse, duress, neglect, and coercion, especially for those
populations who are already vulnerable because of old age, disability,
poverty, or membership in a stigmatized class.
The answer to this failure is not to seek additional processes and
procedures that will allow for the autonomy of the solitary individual to
annihilate himself, but rather to strengthen and support the networks of
uncalculated giving and graceful receiving that cared for him when he was
radically dependent as he entered the world, and will do so again as he
leaves it. The role of the law is to encourage and reward the practice of just
generosity, hospitality, and accompaniment in suffering (misericordia).92 It
should support the opportunities for people to learn and practice gratitude,
humility, openness to the unbidden, and the tolerance of imperfection. The
law should support the cultivation of the moral imagination to see our
neighbor in the suffering other, and for those to see their own intrinsic and
equal dignity despite suffering from a diminished and dependent condition.
More concretely, the law must allow for the aggressive palliation of
pain. And it must protect vulnerable populations by not creating legal
regimes that teach that their lives are not worth living, and in which they
might even be pressured or coerced into ending them.
As with the prior chapters, how the law might accomplish these ends is
a highly complex question for a future inquiry. Suffice it to say that it does
not reflect or advance an anthropology of embodiment to legalize assisted
suicide. Rather, private ordering and public action must be mobilized to
redouble efforts to care for and accompany the sick and the dying while
avoiding the temptation to alleviate suffering by eliminating the patient
himself, whether by our hands or his own.
Conclusion
The fundamental purpose of law is to protect and promote the flourishing of
persons. Accordingly, the richest understanding of the law is an
anthropological one, obtained by inquiry into its underwriting premises
about human identity and thriving. In order to be fully wise, just, and
humane, the means and ends of the law must correspond to the reality of
human life, humanly lived.
The defining character of this reality is embodiment—the fact that we
experience ourselves, one another, and the world around us as living bodies.
As living bodies in time, we are vulnerable, dependent, and subject to
natural limits, including injury, illness, senescence, and death. Thus, both
for our basic survival and to realize our potential, we need to care for one
another. We need robust and expansive networks of uncalculated giving and
graceful receiving populated by people who make the good of others their
own good, without demand for or expectation of recompense. The goods
and practices necessary to the creation and maintenance of these networks
are the virtues of just generosity, hospitality, and accompaniment in
suffering (misericordia), as well as gratitude, humility, openness to the
unbidden, tolerance of imperfection, solidarity, respect for intrinsic equal
dignity, honesty, and cultivation of moral imagination. Viewed through the
lens of the anthropology of embodiment, all living members of the human
family are worthy of care and protection, regardless of age, disability,
cognitive capacity, dependence, and most of all, regardless of the opinions
of others. Everyone can participate in the network of giving and receiving,
even if only as the passive recipient of unconditional love and concern.
There are no pre- or post-personal human beings in the anthropology of
embodiment.
Through the nurture and protection of these networks we survive, and
eventually become the kind of people who can give to others in proportion
to their need, without the hope or expectation of receiving. In this way, we
take responsibility for sustaining such networks of care so that they can
endure for future generations. But, more deeply, it is through becoming a
person capable of unconditional and uncalculated care of others that we
become what we are meant to be. By virtue of our existence as embodied
beings in time, we are made for love and friendship.
Our modern dominant anthropology in the three perennial conflicts in
public bioethics—the legal disputes over abortion, assisted reproduction,
and end-of-life decision-making—is insufficient. It is rooted in expressive
individualism, a reductive and incomplete vision of human identity and
flourishing. While this captures a truth about human particularity and
freedom, it misses crucial aspects of embodied reality. Through the lens of
expressive individualism, there are no unchosen obligations, relationships
are instrumental and transactional, and natural givens offer no guidance for
understanding or negotiating the world. Vulnerability and dependence—that
of others and even our own—are not intelligible. And those around us
whose freedom and agency are diminished or absent because of age,
disease, or disability, are invisible and not recognized as other selves to
whom we owe duties of care (in the absence of a prior agreement).
The current law of abortion, as was argued, frames the public question
as a zero-sum conflict between isolated strangers, one of whom is
recognized as person, with the other deemed a sub-personal being whose
moral and legal status is contingent upon the private judgment of others. It
offers no comprehensive support for the vulnerable persons involved,
including especially the unborn child and her mother. The largely
unregulated legal landscape of assisted reproductive technology creates a
very particular form of “procreative liberty” that does not offer
complementary protections for the broad array of uniquely vulnerable
persons whose lives are touched by these procedures, including gamete
donors (especially women), gestational mothers, genetic mothers and
fathers, and the children conceived with the aid of assisted reproductive
techniques and practices. At the end of life, the law governing refusal or
termination of life sustaining measures for incompetent patients stubbornly
clings to a vision of the patient as an atomized autonomous will as its
animating premise, when the embodied reality of such patients is precisely
the opposite. Its default aspiration is to bind the now-incompetent patient
strictly and unreflectively to his prior preferences, rather than promote
decision-making by the patient’s loved ones, who will consider both his
prior wishes as well as the needs of the patient he has now become. The law
of assisted suicide similarly rests on the goods of autonomy and compassion
premised on a vision of the person reduced to desire and will, neglecting
entirely the profound vulnerability, dependence, and concomitant risks both
to patients themselves and at-risk populations in those communities that
have legalized the practice.
The influence of expressive individualism can be seen in the law’s
solutions to the problems posed in these domains. In response to the bodily,
psychic, and financial burdens of unwanted pregnancy and parenthood,
American abortion jurisprudence offers nothing more than a license to
terminate the developing human life in utero. In response to the pains and
desperation of infertility, the essentially unregulated American legal
landscape offers nothing more than the freedom to create (and select for) a
baby by almost any means possible. In the face of dependence on life-
sustaining measures, the law offers incompetent patients the right “to be left
alone” and the false promise of directing one’s own care by “remote
control” after cognitive abilities necessary for competence have been
irretrievably lost. In the face of terminal illness, the law of assisted suicide
merely offers a right to self-annihilation. These are the rights and privileges
suited to atomized individual wills who inhabit a world of strife. They are
limited weapons and tools of rational mastery fit for a lonely, disembodied
self to defend and pursue its interests. They are not well-designed to address
the complex needs and wants of a community of embodied, vulnerable, and
interdependent human persons.
For such a community, the anthropology at the core of these vital
conflicts of public bioethics must be augmented to correspond to the lived
reality of embodiment. Issues and laws must be reframed according to the
categories of connectivity of the networks of giving and receiving that
embodied beings need to survive and flourish. Reframing abortion as a
conflict involving a mother and her child, thus summoning the support and
care of the network in which both are embedded, including the father,
extended family, community, and polity (including the government itself)
opens channels of care, concern, support, and summons the uncalculated
giving that everyone owes to the mother and her child, before, during, and
after her birth. Resituated in this way, the law is free to do the difficult work
of applying its traditional principles of justification, excuse, and necessity
for cases involving the proposed use of lethal force involving a mother and
innocent child. Doing so allows for a full examination of the tragic conflict
in all its complexity, depending on the concrete facts and circumstances of
each case. Needless to say, it is beyond the scope of this inquiry to offer
specific rules of application of such principles without such context.
Similarly, the public questions of assisted reproductive technology
must be reframed within the anthropology of embodiment and the
normative category of parenthood—the network of uncalculated giving and
receiving par excellence—embracing all of the participants including
genetic parents, gestational mother, rearing parents, and child to be (at all
stages of development from conception to birth). All are entitled to the
protection, support, and care of the networks in which they are situated. The
fundamental aspiration of the law should be that every child conceived by
assisted reproductive technology should find her way to a home with
parents who will welcome her as a gift to be loved unconditionally. This
ultimate purpose should animate every decision by all involved as people
seek medical care in their quest to become parents.
As for the public bioethics of the end of life, the anthropology
undergirding the law must be honest in embracing the reality of
embodiment in time, with the vulnerability and dependence that follows.
Accordingly, the law should adopt measures designed to protect against
abuse, abandonment, fraud, and mistake, while facilitating care for the
patient in his current state, rather than as he was or as we might wish him to
be. The law should encourage and offer care, not open a pathway to suicide
by transforming the healing art of medicine into a handmaiden of death.
In all of these vital areas, the role of the law should be to help create,
support, and protect the networks of giving and receiving on which we all
depend in our vulnerability as embodied beings in time. It should encourage
the goods, virtues, and practices that sustain these networks. The law must
encourage the cultivation of the moral imagination, allowing persons to see
others to whom they owe a duty of care, or from whom they can make a
plea for support. And where such networks fail or are altogether absent, the
law must intervene to protect the vulnerable from exploitation and harm,
and from the temptation to harm others or even themselves in the pursuit of
their own desires and interests.
These are, of course, proposals formulated at the level of high principle
—purposes and ends—and do not begin speak to the complexities of how
one might make them operational in light of the current givens of the
American legal (not to mention political) landscape. They do not even
specify which of the panoply of mechanisms available to the law might be
deployed towards such ends. Such possibilities include a broad spectrum
ranging from passive or active encouragement of private ordering within
voluntary associations to more intrusive modes of intervention to regulate
behavior directly, with many fine-grained alternatives in between.
But before making such changes, we must reorient our thinking toward
the meaning and consequences of our individual and shared lives as bodies
in time. This book is a proposal, made in friendship and solidarity and
intended to be received in this spirit. It is a proposal for a more wise, just,
humane, and fully human public bioethics that begins by remembering the
body.
NOTES
ACKNOWLEDGMENTS
INDEX
NOTES
INTRODUCTION
1. Robert Bellah et al., Habits of the Heart: Individualism and Commitment in American Life
(Berkeley: University of California Press, 1985), 47; Charles Taylor, Philosophical Papers, vol. 2:
Philosophy and the Human Sciences (Cambridge: Cambridge University Press, 1985), 187–210.
2. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues
(Chicago: Open Court Publishing, 1999), 5.
3. Ibid., 121.
4. Ibid., 119; Michael J. Sandel, The Case Against Perfection: Ethics in the Age of Genetic
Engineering (Cambridge, MA: Harvard University Press, 2009), 45.
1. A GENEALOGY OF AMERICAN PUBLIC BIOETHICS
1. 45 C.F.R. § 46.102 (2019).
2. Henry K. Beecher, “Ethics and Clinical Research,” New England Journal of Medicine 274
(1966): 1354–1360.
3. Jean Heller, “Human Guinea Pigs: Syphilis Patients Died Untreated,” Washington Evening
Star, July 25, 1972, A1.
4. Victor Cohn, “Live-Fetus Research Debated,” Washington Post, April 10, 1973, A1.
5. Vincent J. Kopp, “Henry Knowles Beecher and the Development of Informed Consent in
Anesthesia Research,” Anesthesiology 90 (1999): 1756–1765.
6. Beecher, “Ethics and Clinical Research,” 1355.
7. Ibid., 1355.
8. Ibid., 1356.
9. Ibid., 1357.
10. Ibid., 1358.
11. Ibid.
12. Ibid.
13. Ibid., 1354.
14. Ibid.
15. Heller, “Human Guinea Pigs,” A1.
16. Ibid.
17. DeNeen L. Brown, “ ‘You’ve Got Bad Blood’: The Horror of the Tuskegee Syphilis
Experiment,” Washington Post, May 16, 2017.
18. Ibid.
19. Ibid.
20. Cohn, “Live-Fetus Research Debated,” Al.
21. Ibid.
22. Victor Cohn, “NIH Vows Not to Fund Fetus Work,” Washington Post, April 13, 1973, A1.
23. Victor Cohn, “Scientists and Fetus Research,” Washington Post, April 15,1973, A1.
24. Ibid.
25. Geoffrey Chamberlain, “An Artificial Placenta: The Development of an Extracorporeal
System for Maintenance of Immature Infants with Respiratory Problems,” American Journal of
Obstetrics and Gynecology 100 (1968): 615–626.
26. Peter A. J. Adam et al., “Cerebral Oxidation of Glucose and DbetaHydroxy Butyrate in the
Isolated Perfused Human Head,” Transactions of the American Pediatrics Society 309 (1973): 81.
27. In May of 2013, Dr. Gosnell would be sentenced to three life terms in prison for murdering
three newborns who survived their attempted abortions, and manslaughter for the death of patient
Karnamaya Mongar, who died of an overdose of sedatives in his clinic.
28. U.S. Congress, Senate, Committee on Labor and Public Welfare, Quality of Health Care—
Human Experimentation: Hearings before the Subcommittee on Health, 93rd Cong., 1st sess., 1973.
29. Ibid.
30. National Research Act of 1974, Public Law 93–348, U.S. Statutes at Large 88 (1974): 342–
354.
31. Ibid., 349.
32. Ibid., 350.
33. Ibid.
34. Ibid., 353.
35. U.S. Congress, Senate, Committee on Labor and Public Welfare, Fetal Research: Hearing
before the Subcommittee on Health, 93rd Cong., 2nd sess., 1974.
36. Ibid., 98.
37. Ibid., 81.
38. U.S. National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, Research on the Fetus (1975), 74.
39. Ibid., 74.
40. Ibid., 68.
41. The Church Amendments are codified at 42 U.S.C. § 300a–7.
42. Michael J. New, “Hyde @ 40: Analyzing the Impact of the Hyde Amendment,” Charlotte
Lozier Institute, September 2016, 5, https://s27589.pcdn.co/wp-content/uploads/2016/09/OP_hyde_9
.28.3 .
43. Maher v. Roe, 423 U.S. 464 (1977).
44. In re Quinlan, 355 A.2d 647 (N.J. 1976).
45. Robert D. McFadden, “Karen Ann Quinlan, 31, Dies; Focus of ’76 Right to Die Case,” New
York Times, June 12, 1985, A1.
46. Department of Health, Education, and Welfare, Ethics Advisory Board, “Report and
Conclusions: HEW Support of Research Involving Human In Vitro Fertilization and Embryo
Transfer,” Federal Register 44, no. 118 (May 4, 1979): 35033–35058.
47. U.S. National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of
Human Subjects in Research (1979), https://www.hhs.gov/ohrp/regulations-and-policy/belmont-
report/read-the-belmont-report/index.html.
48. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, Defining Death (1981), 2.
49. Bowen v. American Hospital Association, 476 U.S. 610 (1986).
50. Child Abuse Amendments of 1984, Public Law 98–457, U.S. Statutes at Large 98 (1984):
1749–1764.
51. National Organ Transplant Act, Public Law 98–507, U.S. Statutes at Large 98 (1984): 2339–
2348.
https://s27589.pcdn.co/wp-content/uploads/2016/09/OP_hyde_9.28.3
https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html
52. The Department of Health and Human Services, one of the federal agencies that has adopted
the “Common Rule,” has codified its regulations in 45 C.F.R. § 46.
53. Health Research Extension Act of 1985, Public Law 99–158, U.S. Statutes at Large 99
(1985): 820–886.
54. Harris v. McRae, 448 U.S. 297 (1980).
55. Webster v. Reproductive Health Services, 492 U.S. 490 (1989).
56. In re Baby M, 537 A.2d 1227 (N.J. 1988).
57. Fertility Clinic Success Rate and Certification Act of 1992, Public Law 102–493, U.S.
Statutes at Large 106 (1992): 3146–3152.
58. Davis v. Davis, 842 S.W.2d 588 (Tenn. 1992).
59. Planned Parenthood v. Casey, 505 U.S. 833 (1992).
60. National Institutes of Health Revitalization Act of 1993, Public Law 103–43, U.S. Statutes at
Large 107 (1993): 122–219.
61. Public Law 104–99, U.S. Statutes at Large 110 (1996): 34.
62. James A. Thomson et al., “Embryonic Stem Cell Lines Derived from Human Blastocysts,”
Science 282 (1998): 1145–1147.
63. 497 U.S. 261 (1990).
64. William Claiborne, “ ‘Death With Dignity’ Measure May Make Oregon National
Battleground,” Washington Post, June 27, 1997, A19.
65. Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997).
66. George W. Bush, “President Discusses Stem Cell Research,” August 9, 2001, https://
georgewbush-whitehouse.archives.gov/news/releases/2001/08/20010809-2.html.
67. Andrew Pollack, “Measure Passed, California Weights Its Future as a Stem Cell Epicenter,”
New York Times, Nov. 4, 2004.
68. The “Weldon” Amendment is now permanently codified. Leahy-Smith American Invents
Act, Public Law 112–29, U.S. Statutes at Large 125 (2011): 340.
69. Shinya Yamanaka et al., “Induction of Pluripotent Stem Cells from Adult Human Fibroblasts
by Defined Factors,” Cell 131 (2007): 861–872; James A. Thomson et al., “Induced Pluripotent Stem
Cell Lines Derived from Human Somatic Cells,” Science 318 (2007): 1917–1920.
70. “Executive Order 13505 of March 9, 2009, Removing Barriers to Responsible Scientific
Research Involving Human Stem Cells,” Code of Federal Regulations, title 3 (2010): 229–230,
https://www.govinfo.gov/content/pkg/CFR-2010-title3-vol1/pdf/CFR-2010-title3-vol1 .
71. Stenberg v. Carhart, 530 U.S. 914 (2000).
72. Gonzales v Carhart, 550 U.S. 124 (2007).
73. Born Alive Infants Protection Act of 2002, Public Law 107–207, U.S. Statutes at Large 116
(2002): 926.
74. Unborn Victims of Violence Act of 2004, Public Law 108–212, U.S. Statutes at Large 118
(2004): 568–570.
75. Consolidated Appropriations Act, Public Law 111–117, U.S. Statutes at Large 123 (2009):
3034.
76. Fetus Farming Prohibition Act of 2006, Public Law 109–242, U.S. Statutes at Large 120
(2006): 570–571.
77. Martin Jinek et al., “A Programmable Dual-RNA-Guided DNA Endonuclease in Adaptive
Bacterial Immunity,” Science 337 (2012): 816–821.
78. Feng Zhang, “Genome Engineering Using the CRISPR-Cas9 System,” Nature Protocols 8
(2013): 2281–2308.
79. Puping Liang et al., “CRISPR / Cas9-Mediated Gene Editing in Human Triponuclear
Zygotes,” Protein & Cell 6 (2015): 363–372.
https://georgewbush-whitehouse.archives.gov/news/releases/2001/08/20010809-2.html
https://www.govinfo.gov/content/pkg/CFR-2010-title3-vol1/pdf/CFR-2010-title3-vol1
80. David A. Prentice, “Modest but Meaningful Protection from Human Embryo Genetic
Manipulation,” Townhall, December 17, 2015, https://townhall.com/columnists/davidaprentice/2015
/12/17/modest-but-meaningful-protection-from-human-embryo-genetic-manipulation-n2094746.
81. John Aach et al., “Addressing the Ethical Issues Raised by Synthetic Human Entities with
Embryo-Like Features,” eLife (2017): 1–20.
82. Shoukhrat Mitalipov et al., “Correction of a Pathogenic Gene Mutation in Human Embryos,”
Nature 548 (2017): 413–419.
83. Charlie Osborne, “Meet Lulu and Nana, Claimed to be the World’s First Gene-Edited
Children,” ZDNet, November 26, 2018, https://www.zdnet.com/article/meet-lulu-and-nana-the-
worlds-first-reported-gene-edited-children/.
84. Debra Goldschmidt, “Jahi McMath, California Teen at Center of Brain-Death Controversy,
Has Died,” CNNHealth, June 29, 2018, https://www.cnn.com/2018/06/29/health/jahi-mcmath-brain-
dead-teen-death/index.html.
85. Allan Turner, “Pasadena Man Whose Life-Threatening Illness Spurred Challenge to Texas
Law Dies at Hospital,” Houston Chronicle, December 23, 2015, https://www.chron.com/news
/houston-texas/houston/article/Pasadena-man-whose-life-threatening-illness-6717843.php.
86. Whole Woman’s Health v. Hellerstedt, 136 S.Ct. 2292 (2016).
2. AN ANTHROPOLOGICAL SOLUTION
1. James M. Gustafson, “Genetic Therapy: Ethical and Religious Reflections,” Journal of
Contemporary Health, Law, and Policy 8 (1992): 191.
2. Ernst Cassirer, An Essay on Man: An Introduction to a Philosophy of Human Culture (New
Haven: Yale University Press, 1992), 1.
3. Whitney J. Oates, ed., Basic Writings of Saint Augustine, vol. 1 (Grand Rapids, MI: Baker
Publishing Group, 1993), 172.
4. Psalm 8:4 (RSV).
5. Kenneth L. Schmitz, “Reconstructing the Person: A Meditation on the Meaning of
Personality,” Crisis Magazine, April 1, 1999, https://www.crisismagazine.com/1999/reconstructing-
the-person-a-meditation-on-the-meaning-of-personality.
6. Boethius, Theological Tractates and the Consolation of Philosophy, ed. H. F. Stewart and E.
K. Rand (Cambridge, MA: Harvard University Press, 1918); John Locke, Essay on Human
Understanding, ed. P. H. Nidditch (Oxford: Oxford University Press, 1975); Joseph Fletcher,
“Indicators of Humanhood: A Tentative Profile of Man,” The Hastings Center Report 2 (1972): 1–4;
Mary Anne Warren, “On the Moral and Legal Status of Abortion,” The Monist 57 (1973).
7. Quoted in Edmund D. Pelegrino, “Toward A Richer Bioethics: A Conclusion,” in Charles R.
Taylor and Robert Dell’Oro, eds., Health and Human Flourishing: Religion, Medicine, and Moral
Anthropology (Georgetown: Georgetown University Press, 2006), 248.
8. John H. Evans, What Is a Human? What the Answer Means for Human Life (Oxford: Oxford
University Press, 2016).
9. Robert Bellah et al., Habits of the Heart: Individualism and Commitment in American Life
(Berkeley: University of California Press, 1985), 27.
10. Roderick T. Long, “The Classical Roots of Radical Individualism,” Social Philosophy and
Policy 24 (2007): 262–297.
11. Tibor R. Machan, Classical Individualism: The Supreme Importance of Each Human Being
(London: Routledge, 1996).
12. Yehoshua Arieli, Individualism and Nationalism in American Ideology (Cambridge, MA:
Harvard University Press, 1964).
https://townhall.com/columnists/davidaprentice/2015/12/17/modest-but-meaningful-protection-from-human-embryo-genetic-manipulation-n2094746
https://www.zdnet.com/article/meet-lulu-and-nana-the-worlds-first-reported-gene-edited-children/
https://www.cnn.com/2018/06/29/health/jahi-mcmath-brain-dead-teen-death/index.html
https://www.chron.com/news/houston-texas/houston/article/Pasadena-man-whose-life-threatening-illness-6717843.php
https://www.crisismagazine.com/1999/reconstructing-the-person-a-meditation-on-the-meaning-of-personality
13. Alexis de Tocqueville, Democracy in America, vol. 2, trans. George Lawrence (New York:
Harper, 2006), 508.
14. Ibid.
15. Bellah, Habits of the Heart, 334.
16. Machan, Classical Individualism.
17. Adam Smith, An Inquiry into the Nature and Causes of the Wealth of Nations (Oxford:
Oxford University Press, 2008).
18. Bellah, Habits of the Heart, 47.
19. Charles Taylor, Philosophical Papers, vol. 2: Philosophy and the Human Sciences
(Cambridge: Cambridge University Press, 1985), 189.
20. Ibid., 201.
21. Ibid.
22. Ibid., 202.
23. Long, “The Classical Roots of Radical Individualism,” 262–297.
24. Michael J. Sandel, Public Philosophy: Essays on Morality in Politics (Cambridge, MA:
Harvard University Press, 2005), 160.
25. John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 2009), 491.
26. Ibid.
27. Sandel, Public Philosophy, 162.
28. Michael J. Sandel, “The Procedural Republic and the Unencumbered Self,” Political Theory
12 (1984), 87.
29. Sandel, Public Philosophy, 164.
30. Bellah, Habits of the Heart, 334.
31. Ibid., 33.
32. Ralph Waldo Emerson, Journals of Ralph Waldo Emerson, vol. 3 (Boston: Houghton Mifflin,
1912).
33. Bellah, Habits of the Heart, 48.
34. Charles Taylor, Sources of the Self: The Making of Modern Identity (Cambridge, MA:
Harvard University Press, 1989); Charles Taylor, Malaise of Modernity (Toronto: House of Anansi,
1991); Charles Taylor, Multiculturalism: Examining the Politics of Recognition (Princeton: Princeton
University Press, 1993); Charles Taylor, (1993), A Secular Age (Cambridge, MA: Harvard University
Press, 2007).
35. Taylor, The Malaise of Modernity, 16.
36. Ibid., 17.
37. Ibid., 16.
38. Ibid., 17.
39. Taylor, Sources of the Self, 375.
40. Plato, Theatetus, trans. Robin H. Waterfield (London: Penguin, 1987), 160d9.
41. Charles Taylor, The Ethics of Authenticity (Cambridge, MA: Harvard University Press,
1992).
42. Alfred Tennyson, “Ulysses,” Poetry Foundation, https://www.poetryfoundation.org/poems
/45392/ulysses.
43. George Gordon Noel Byron, Manred: A Dramatic Poem (London: John Murray, 1817).
44. John Milton, Paradise Lost, bk. 5 (London: Penguin, 2000), lines 854–866.
45. Taylor, Sources of the Self, 376.
46. Taylor, The Malaise of Modernity, 32.
47. Alasdair MacIntyre, After Virtue: A Study in Moral Theory (Notre Dame, IN: University of
Notre Dame Press, 1981), 11–12.
https://www.poetryfoundation.org/poems/45392/ulysses
48. Ibid., 220.
49. Ibid., 75.
50. Sandel, “The Procedural Republic and the Unencumbered Self,” 86.
51. Sandel, Public Philosophy, 164.
52. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues
(Chicago: Open Court Publishing, 1999), 5.
53. Ibid., 73.
54. Ibid., 108.
55. Ibid., 91.
56. Bertrand de Jouvenel, The Pure Theory of Politics (Carmel, IN: Liberty Fund, 2000), 61.
57. Ibid., 60.
58. Milton, Paradise Lost, bk. 5, lines 859–861.
59. MacIntyre, Dependent Rational Animals, 82.
60. Charles Taylor, Philosophical Papers, vol. 2: Philosophy and the Human Sciences
(Cambridge: Cambridge University Press, 1985), 202.
61. Sandel, Public Philosophy, 166.
62. MacIntyre, After Virtue, 216.
63. Ibid., 216.
64. Sandel, Public Philosophy, 168.
65. Charles Taylor, Multiculturalism: Examining the Politics of Recognition (Princeton:
Princeton University Press, 1994), 32.
66. MacIntyre, After Virtue, 221
67. Michael J. Sandel, Liberalism and Its Critics (New York: New York University Press, 1984),
173.
68. Roger Scruton, On Human Nature (Princeton: Princeton University Press, 2018), 116.
69. Bertrand de Jouvenel, Power: The Natural History of its Growth (London: Batchworth,
1952), 414.
70. Aleksandr Solzhenitsyn, “We Have Ceased to See the Purpose,” in Aleksandr Solzhenitsyn,
The Solzhenitsyn Reader: New and Essential Writings, 1947–2005, eds. Edward E. Ericson and
Daniel J. Mahoney (Wilmington, DE: Intercollegiate Studies Institute, 2009).
71. John H. Evans, What Is a Human? What the Answer Means for Human Life (Oxford: Oxford
University Press, 2016), 13.
72. Ibid., 21.
73. Bellah, Habits of the Heart, 38.
74. MacIntyre, Dependent Rational Animals, 146.
75. Ibid., 146.
76. Ibid., 119.
77. Ibid., 121.
78. Michael J. Sandel, “The Case Against Perfection,” The Atlantic, April 2004, https://www
.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.
79. Michael J. Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering
(Cambridge, MA: Harvard University Press, 2009), 45.
80. MacIntyre, Dependent Rational Animals, 91.
81. Blaise Pascal, Pensées (London: Penguin, 1995).
82. Michael J. Sandel, “The Case Against Perfection,” The Atlantic, April 2004, https://www
.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.
83. Keith Phipps, “Close Encounters of the Third Kind,” Slate, November 20, 2007, http://www
.slate.com/articles/arts/dvdextras/2007/11/close_encounters_of_the_third_kind.html.
https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/
https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/
http://www.slate.com/articles/arts/dvdextras/2007/11/close_encounters_of_the_third_kind.html
84. Quote available at https://www.officetally.com/the-office-the-whale.
85. Bellah, Habits of the Heart, 153.
86. Roscoe Pound, The Spirit of the Common Law (London: Routledge, 1999), 13.
87. Mary Ann Glendon, “Looking for ‘Persons’ in the Law,” First Things, December 2006,
https://www.firstthings.com/article/2006/12/looking-forpersonsin-the-law.
3. IN CASES OF ABORTION
1. Paul Benjamin Linton, “Enforcement of State Abortion Statutes after Roe: A State-by-State
Analysis,” University of Detroit Law Review 67 (1990): 158–160.
2. Roe v. Wade, 314 F. Supp. 1217 (N.D. Tex. 1970).
3. Griswold v. Connecticut, 381 U.S. 479, 487–499 (1965) (Goldberg, J., concurring).
4. Griswold v. Connecticut, 381 U.S. 479 (1965) (opinion of Douglas, J.).
5. Griswold v. Connecticut, 381 U.S. at 487–499 (1965) (Goldberg, J., concurring).
6. Roe v. Wade, 314 F. Supp. 1217, 1224 (N.D. Tex. 1970).
7. See United States Courts, “Appellate Courts and Cases—Journalist’s Guide,” https://www
.uscourts.gov/statistics-reports/appellate-courts-and-cases-journalists-guide.
8. Roe v. Wade, 314 F. Supp. at 1224.
9. Roe v. Wade, 410 U.S. 113 (1973).
10. Ibid., 152–154.
11. U.S. Const. amend. IV.
12. See Griswold v. Connecticut, 381 U.S. at 484 (1965) (opinion of Douglas, J.) (“The
foregoing cases suggest that specific guarantees in the Bill of Rights have penumbras, formed by
emanation from those guarantees that help give them life and substance.”).
13. Roe v. Wade, 410 U.S. at 152–154.
14. Lochner v. New York, 198 U.S. 45 (1905).
15. See Roe v. Wade, 410 U.S. at 152 (citing Palko v. Connecticut, 302 U.S. 219 [1937]).
16. Roe v. Wade, 410 U.S. at 152.
17. Ibid., 152–154.
18. Randolph, A. Raymond, “Before Roe v. Wade: Judge Friendly’s Draft Abortion Opinion,”
Harvard Journal of Law and Public Policy 29 (2006): 1037–1038.
19. Joseph W. Dellapenna, Dispelling the Myths of Abortion History (Durham, N.C.: Carolina
Academic Press, 2006), 315.
20. 1867 Ohio Senate J. App., 233–234.
21. Roe v. Wade, 410 U.S. at 153.
22. Ibid.
23. Ibid., 163.
24. Ibid., 155.
25. Ibid., 156–159.
26. Ibid., 159.
27. Ibid.
28. Ibid., 162.
29. Ibid., 163.
30. Ibid.
31. Ibid.
32. Ibid., 163–164.
33. Doe v. Bolton, 410 U.S. 179 (1973).
34. Ibid., 183.
35. Ibid., 183–184.
https://www.firstthings.com/article/2006/12/looking-forpersonsin-the-law
https://www.uscourts.gov/statistics-reports/appellate-courts-and-cases-journalists-guide
36. Ibid., 201.
37. Ibid., 191.
38. Ibid., 191–192.
39. Judith Jarvis Thomson, “A Defense of Abortion,” Philosophy and Public Affairs 1 (Autumn
1971): 47–66.
40. Ibid., 47.
41. Ibid., 55.
42. Ibid., 58–59.
43. Ibid., 59.
44. Ibid., 64.
45. Ibid., 65.
46. Ibid., 65–66.
47. Ibid., 66.
48. Michael Tooley, “Abortion and Infanticide,” Philosophy and Public Affairs 2 (Autumn
1972): 37–65.
49. Mary Anne Warren, “On the Moral and Legal Status of Abortion,” The Monist 57 (January
1973): 43–61.
50. Tooley, “Abortion and Infanticide,” 44.
51. Ibid., 45.
52. Ibid., 47.
53. Ibid., 42, 52.
54. Warren, “On the Moral and Legal Status of Abortion,” 43.
55. Roe v. Wade, 410 U.S. at 156–157.
56. Warren, “On the Moral and Legal Status of Abortion,” 50.
57. Ibid., 47.
58. Ibid., 43.
59. Ibid., 52.
60. Ibid., 55.
61. Ibid.
62. Ibid., 56.
63. Ibid., 60–61.
64. Mary Anne Warren, “Postscript on Infanticide, February 26, 1982” in The Problem of
Abortion, ed. Joel Feinberg (Belmont, CA: Wadsworth Publishing Co., 1984), 117.
65. Ibid.
66. See David Boonin, A Defense of Abortion (Cambridge: Cambridge University Press, 2002);
Alberto Giublini and Francesca Minerva, “After-Birth Abortion: Why Should the Baby Live?”
Journal of Medical Ethics 39 (2013): 261–163; Peter Singer, Practical Ethics (Cambridge:
Cambridge University Press, 2011).
67. Roe v. Wade, 410 U.S. at 162.
68. Thornburgh v. American College of Obstetricians and Gynecologists, 476 U.S. 747, 794
(1986) (White, J., dissenting).
69. Pennsylvania Abortion Control Act of 1989, 18 Pa. Cons. Stat. § 3201–3220 (1989).
70. Planned Parenthood v. Casey, 505 U.S. 833 (1992).
71. Planned Parenthood v. Casey, 505 U.S. at 846.
72. Ibid.
73. Ibid. (citing Daniels v. Williams, 474 U.S. 327, 331 [1986]).
74. Ibid., 849.
75. Ibid., 850–851.
76. Ibid., 851.
77. Ibid., 852.
78. Ibid.
79. Ibid., 854–864.
80. Ibid., 864–869.
81. Ibid., 856.
82. Ibid., 869.
83. Ibid., 876.
84. Ibid., 878.
85. Ibid., 879.
86. Ibid., 870.
87. Ibid.
88. Ibid., 851.
89. Ibid., 852.
90. Ibid., 856.
91. Martin Haskell, “Dilation and Extraction for Late Second Trimester Abortions,” Presented at
the National Abortion Federation Risk Management Seminar Second Trimester Abortion: From
Every Angle (September 13, 1992) 27–34.
92. Ibid., 30.
93. Ibid., 28.
94. Ronald Powers, “Moynihan, in Break with Clinton, Condemns Abortion Procedure,”
Associated Press, May 14, 1996, https://www.apnews.com/6e619434f53783d58df59a7f1331c8b0.
95. David Stout, “An Abortion Rights Advocate Says He Lied About Procedure,” New York
Times, February 26, 1997, A12.
96. Ibid.; Roy Rivenburg, “Partial Truths,” Los Angeles Times, April 2, 1997, https://www
.latimes.com/archives/la-xpm-1997-04-02-ls-44326-story.html.
97. Stenberg v. Carhart, 530 U.S. 914 (2000).
98. Ibid., 930.
99. Ibid., 934.
100. See ibid., 964 (Kennedy, J., dissenting) (“The Court awards each physician a veto power
over the State’s medical judgment that the procedures should not be performed.”).
101. Frank Murray, “Daschle Bill May Not Ban Anything; Abortionists Could Use Own
Judgment,” The Washington Times, May 15, 1997, A1.
102. Stenberg v. Carhart, 530 U.S. at 935–936.
103. Ibid., 937.
104. Ibid., 937 (O’Connor, J., concurring).
105. Ibid., 972 (Kennedy, J., dissenting).
106. Ibid.
107. Ibid., 1015.
108. Ibid., 966.
109. Ibid., 967.
110. Ibid.
111. Partial Birth Abortion Act of 2003, Public Law 108-105, U.S. Statutes at Large 117 (2003):
1201–1208.
112. Ibid., 1207.
113. Gonzales v. Carhart, 550 U.S. 124 (2007) [hereinafter Carhart II].
114. Ibid., 147.
https://www.apnews.com/6e619434f53783d58df59a7f1331c8b0
https://www.latimes.com/archives/la-xpm-1997-04-02-ls-44326-story.html
115. Ibid., 170 (Ginsburg, J., dissenting) (citing Planned Parenthood v. Casey, 505 U.S. at 851–
85).
116. Ibid., 172 (Ginsburg, J. dissenting).
117. Ibid., 159 (opinion of Kennedy, J.) (citing Brief for Sandra Cano, The Former “Mary Doe”
of Doe v. Bolton, and 180 Women Injure by Abortion as Amici Curiae in Support of Petitioners,
Gonzales v. Carhart, 550 U.S. 124 [2007] [No. 05-380]); Avi Selk, “ ‘Jane Roe’ Made Abortion
Legal. Then a Minister Made Her Rethink,” Washington Post, February 18, 2017, https://www
.washingtonpost.com/news/acts-of-faith/wp/2017/02/18/jane-roe-made-abortion-legal-then-a-
minister-made-her-repent/.
118. Carhart II, 505 U.S. at 185 (Ginsburg, J., dissenting).
119. Ibid., 183–184 (citing opinion of Kennedy, J., at 159).
120. Ibid., 187.
121. Jon Hurdle and Trip Gabriel, “Philadelphia Abortion Doctor Guilty of Murder in Later-
Term Procedures,” New York Times, May 14, 2013, A12.
122. Sabrina Tavernise, “Squalid Abortion Clinic Escaped State Oversight,” New York Times,
January 23, 2011, A25.
123. Whole Woman’s Health v. Lakey, 46 F. Supp. 673 (W.D. Tex. 2014), rev’d in part by Whole
Woman’s Health v. Cole, 790 F.3d 563 (5th Cir. 2015).
124. Whole Woman’s Health v. Hellerstedt, 136 S.Ct. 2292 (2016).
125. Ibid., 2309.
126. Ibid., 2320.
127. Ibid., 2310–2318.
128. Ibid., 2330 (Thomas, J., dissenting) (citing Antonin Scalia, “The Rule of Law as a Law of
Rules,” University of Chicago Law Review, 56 (1989): 1182).
129. Whole Woman’s Health v. Hellerstedt, 136 S.Ct. at 2343 (Alito, J., dissenting).
130. S.B. 240, 2019–2020 Gen. Assemb, Reg. Sess. (N.Y. 2019).
131. Ibid.
132. H.B. 2495, 101st Gen. Assemb., Reg. Sess. (Ill. 2019).
133. See Immigration and Naturalization Service v. St. Cyr, 533 U.S. 289, 342 (Scalia, J.,
dissenting).
134. Hodes & Nauser, MDs, P. A. v. Schmidt, 440 P.3d 461, 466 (Kan. 2019).
135. Ibid., 520 (Stegall, J., dissenting).
136. Ibid., 480 (per curiam opinion).
137. Ibid., 483.
138. Planned Parenthood v. Casey, 505 U.S. at 856.
139. Of course, some commentators will argue that only women are permitted to speak or write
about the reality and meaning of procreation, pregnancy, and birth. While this perspective is surely
understandable, especially in light of historic unjust and shameful repression of women’s voices and
exclusion of their essential insights on these and other matters, it is not finally persuasive. Since the
first emergence of homo sapiens, every human being alive or dead directly experienced and
benefitted from a woman’s pregnancy, and thus has standing to explore its human meaning, albeit
with appropriate trepidation and deference to others who understand it more deeply owing to her
personal experience carrying a human life in utero.
140. Sidney Callahan, “Abortion and the Sexual Agenda,” in Moral Issues and Christian
Responses, ed. Patricia Beattie Jung and L. Shannon Jung (Minneapolis: Fortress Press, 2013), 365.
141. See Gilbert Meilaender, Not by Nature but by Grace: Forming Families Through Adoption
(Notre Dame, IN: University of Notre Dame Press, 2016).
https://www.washingtonpost.com/news/acts-of-faith/wp/2017/02/18/jane-roe-made-abortion-legal-then-a-minister-made-her-repent/
142. Carl Schneider, “Bioethics in the Language of the Law,” Hastings Center Report 24, no. 4
(1994): 21.
143. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues
(London: Duckworth, 1999).
144. Of course, the Court seems to distinguish the moral status of the fetus pre- and post-
viability, but even this becomes functionally conflated in light of Doe v. Bolton’s health exception.
145. This is not to say that other species are not worthy of care, concern, and legal protection.
146. To be clear, this is a proposal very much at odds with the premises held by prominent
supporters of abortion rights, including perhaps Justice Ruth Bader Ginsburg. In a recent opinion
concurring in part and dissenting in part from the Supreme Court’s decision to affirm the
constitutionality of an Indiana law requiring the humane disposition of fetal remains following
abortion and decline to review the constitutionality of that state’s ban on abortions solely for reasons
of genetic, racial, or sex discrimination, Justice Ginsburg stated explicitly: “A woman who exercises
her constitutionally protected right to terminate a pregnancy is not a ‘mother.’ ” Box v. Planned
Parenthood, 139 S.Ct. 1780, 1793 n.2 (2019) (Ginsburg, J., concurring in part). She was responding
to Justice Thomas’s use of the word to refer to a woman who has obtained an abortion, so it is
possible that she meant after an abortion is completed, a woman is no longer a mother. But it is also
possible she meant to say that it is solely the intention to parent that determines parenthood rather
than a biological reality. It is this latter notion that the anthropology of embodiment rejects.
147. Reva Siegal, “Abortion,” in Companion to American Thought, ed. Richard Wightman Fox
and James T. Kloppenberg (Oxford: Blackwell Publishers, 1995), 2.
4. ASSISTED REPRODUCTION
John A. Robertson, Children of Choice (Princeton, NJ: Princeton University Press, 1994), 4.
Dr. Gerald Schatten, “Session 6: Assisted Reproductive Technologies in the Genomics Era,”
testimony, President’s Council on Bioethics, December 13, 2002.
1. R. G. Edwards, B. D. Bavister, and P. C. Steptoe, “Early Stages of Fertilization in vitro of
Human Oocytes Matured in vitro,” Nature 221 (1969): 632–635.
2. Suzanna White Junod, “FDA’s Approval of the First Oral Contraceptive, Enovid,” FDA,
https://www.fda.gov/media/110456/download.
3. Roe v. Wade, 410 U.S. 113 (1973).
4. Victor Cohn, “First U.S. Test-Tube Baby Is Born,” Washington Post, December 29, 1981, A1.
5. Ibid.
6. Maggie Fox, “A Million Babies Have Been Born in the U.S. With Fertility Help,” NBC News,
April 28, 2017, https://www.nbcnews.com/health/health-news/million-babies-have-been-born-u-s-
fertility-help-n752506.
7. Centers for Disease Control and Prevention, American Society for Reproductive Medicine,
Society for Assisted Reproductive Technology, “2016 Assisted Reproductive Technology National
Summary Report,” US Dept of Health and Human Services, October 2018, https://www.cdc.gov/art
/pdf/2016-report/ART-2016-National-Summary-Report , 2 [hereinafter “2016 National Summary
Report”]; Brady E. Hamilton et al., “Births: Provisional Data for 2016,” CDC, June 2017, https://
www.cdc.gov/nchs/data/vsrr/report002 , 1.
8. “2016 National Summary Report,” 50.
9. Tamar Lewin, “Industry’s Growth Leads to Leftover Embryos, and Painful Choices,” New
York Times, June 18, 2015, A1.
10. See Catherine A. McMahon et al., “Embryo Donation for Medical Research: Attitudes and
Concerns of Potential Donors,” Human Reproduction, 18 (2003): 871–877; Kay Elder, “Human
https://www.fda.gov/media/110456/download
https://www.nbcnews.com/health/health-news/million-babies-have-been-born-u-s-fertility-help-n752506
https://www.cdc.gov/art/pdf/2016-report/ART-2016-National-Summary-Report
https://www.cdc.gov/nchs/data/vsrr/report002
Embryos Donated for Research: A Gift that Goes on Giving,” BioNews, October 16, 2017, https://
www.bionews.org.uk/page_96220.
11. Alan Zarembo, “An Ethics Debate Over Embryos on the Cheap,” Los Angeles Times,
November 29, 2012, https://www.latimes.com/health/la-xpm-2012-nov-19-la-me-embryo-20121120-
story.html.
12. David Plotz, “Darwin’s Engineer,” Los Angeles Times, June 5, 2005, https://www.latimes
.com/la-tm-spermbank23jun05-story.html.
13. Sarah M. Capelouto et al., “Sex Selection for Non-medical Indications: A Survey of Current
Pre-implantation Genetic Screening Practices among U.S. ART Clinics,” Journal of Assisted
Reproduction and Genetics 35 (2018): 412–413.
14. Hannah Devlin, “IVF Couples Could Be Able to Choose the ‘Smartest’ Embryo,” The
Guardian, May 24, 2019, https://www.theguardian.com/society/2019/may/24/ivf-couples-could-be-
able-to-choose-the-smartest-embryo.
15. Ibid.
16. 42 U.S.C. § 263a-7.
17. Annick Delvigne and Serge Rozenberg, “Epidemiology and Prevention of Ovarian
Hyperstimulation Syndrome (OHSS): A Review,” Human Reproduction Update 8 (2002): 559–577.
18. “2016 National Summary Report,” 64.
19. Ibid.
20. Ibid., 54.
21. “ART and Intracytoplasmic Sperm Injection (ICSI) in the United States,” CDC, https://www
.cdc.gov/art/key-findings/icsi.html.
22. Ibid.
23. Ibid.
24. Capelouto et al., “Sex Selection for Non-medical Indications,” 411.
25. Harvey J. Stern, “Preimplantation Genetic Diagnosis: Prenatal Testing for Embryos Finally
Achieving Its Potential,” Journal of Clinical Medicine 3 (2014): 285.
26. Ibid., 283.
27. Ibid., 284.
28. Capelouto et al., “Sex Selection for Non-medical Indications,” 412–413.
29. Ibid.
30. Ibid., 413.
31. Ariana Eunjung Cha, “From Sex-selection to Surrogates, American IVF Clinics Provide
Services Outlawed Elsewhere,” Washington Post, December 30, 2018, https://www.washingtonpost
.com/national/health-science/from-sex-selection-to-surrogates-american-ivf-clinics-provide-services-
outlawed-elsewhere/2018/12/29/0b596668-03c0-11e9-9122-82e98f91ee6f_story.html.
32. “2016 National Summary Report,” 53.
33. Ibid., 32.
34. Ibid., 56.
35. Ibid., 56–57.
36. Lewin, “Industry’s Growth Leads to Leftover Embryos, and Painful Choices.”
37. For transfers involving frozen nondonor or donor embryos, the pregnancy rate was 56
percent. “2016 National Summary Report,” 16.
38. Ibid., 18. The CDC was unable to determine the number of fetuses for 6.9 percent of
pregnancies.
39. See President’s Council on Bioethics, Reproduction and Responsibility: The Regulation of
New Biotechnologies, March 2004, https://bioethicsarchive.georgetown.edu/pcbe/reports
/reproductionandresponsibility/fulldoc.html, 43.
https://www.bionews.org.uk/page_96220
https://www.latimes.com/health/la-xpm-2012-nov-19-la-me-embryo-20121120-story.html
https://www.latimes.com/la-tm-spermbank23jun05-story.html
https://www.theguardian.com/society/2019/may/24/ivf-couples-could-be-able-to-choose-the-smartest-embryo
https://www.cdc.gov/art/key-findings/icsi.html
https://www.washingtonpost.com/national/health-science/from-sex-selection-to-surrogates-american-ivf-clinics-provide-services-outlawed-elsewhere/2018/12/29/0b596668-03c0-11e9-9122-82e98f91ee6f_story.html
https://bioethicsarchive.georgetown.edu/pcbe/reports/reproductionandresponsibility/fulldoc.html
40. “2016 National Summary Report,” 15. For frozen nondonor embryos, 46 percent of transfers
resulted in live birth. For frozen donor embryos, the rate was 45 percent per transfer. Ibid., 44.
41. Ibid., 18.
42. Aniket D. Kulkarni et al., “Fertility Treatments and Multiple Births in the United States,”
New England Journal of Medicine 369 (2013): 2218–2225; Joyce A. Martin et al., “Births: Final
Data for 2016,” National Vital Statistics Reports 67 (2018): 4.
43. Kulkarni et al., “Fertility Treatments and Multiple Births in the United States,” 2218.
44. “2016 National Summary Report,” 59.
45. Paolo Cavoretto et al., “Risk of Spontaneous Preterm Birth in Singleton Pregnancies
Conceived After IVF / ICSI Treatment: Meta-analysis of Cohort Studies,” Ultrasound in Obstetrics
and Gynecology 51 (2018): 43–53.
46. “2016 National Summary Report,” 19.
47. Ibid.
48. “ART and Birth Defects,” CDC, https://www.cdc.gov/art/key-findings/birth-defects.html.
49. Ibid.
50. Michael J. Davies et al., “Reproductive Technologies and the Risk of Birth Defects,” New
England Journal of Medicine 366 (2012): 1803.
51. “Key Findings: The Association between Assisted Reproductive Technology and Autism
Spectrum Disorder,” CDC, https://www.cdc.gov/ncbddd/autism/features/artandasd.html.
52. “ART and Intracytoplasmic Sperm Injection (ICSI) in the United States,” CDC, https://www
.cdc.gov/art/key-findings/icsi.html.
53. Ibid.
54. “2016 National Summary Report,” 5.
55. “ART and Gestational Carriers,” CDC, https://www.cdc.gov/art/key-findings/gestational-
carriers.html.
56. Ibid.
57. Ibid.
58. Fertility Clinic Success Rate and Certification Act of 1992, Public Law 102–493, U.S.
Statutes at Large 106 (1992): 3146–3152.
59. See The President’s Council on Bioethics, Reproduction and Responsibility: The Regulation
of New Biotechnologies, 50.
60. Ibid.
61. Omnibus Consolidated Appropriations Act of 1997, Public Law 104–208, U.S. Statutes at
Large, 110 (1997): 3009–3270.
62. See “Human Cells, Tissues, and Cellular and Tissue-Based Products; Donor Screening and
Testing; and Related Labeling 6/19/2007 Final Rule Questions and Answers,” FDA, https://www.fda
.gov/vaccines-blood-biologics/tissue-tissue-products/human-cells-tissues-and-cellular-and-tissue-
based-products-donor-screening-and-testing-and-related.
63. Stuart Nightingale, “Letter About Human Cloning,” FDA, October 26, 1998, https://www
.fda.gov/science-research/clinical-trials-and-human-subject-protection/letter-about-human-cloning.
64. “Cellular & Gene Therapy Products,” FDA, https://www.fda.gov/vaccines-blood-biologics
/cellular-gene-therapy-products.
65. See President’s Council on Bioethics, Reproduction and Responsibility: The Regulation of
New Biotechnologies, 62 (citing Kathryn Zoon, Testimony before the Subcommittee on Oversight
and Investigations of the Committee on Energy and Commerce [House of Representatives, March 28,
2001]).
66. Consolidated Appropriations Act of 2016, Public Law 114–113, U.S. Statutes at Large
(2016): 2283.
https://www.cdc.gov/art/key-findings/birth-defects.html
https://www.cdc.gov/ncbddd/autism/features/artandasd.html
https://www.cdc.gov/art/key-findings/icsi.html
https://www.cdc.gov/art/key-findings/gestational-carriers.html
https://www.fda.gov/vaccines-blood-biologics/tissue-tissue-products/human-cells-tissues-and-cellular-and-tissue-based-products-donor-screening-and-testing-and-related
https://www.fda.gov/science-research/clinical-trials-and-human-subject-protection/letter-about-human-cloning
https://www.fda.gov/vaccines-blood-biologics/cellular-gene-therapy-products
67. In 2001, fourteen years before the Aderholt Amendment, the FDA intervened to block
clinicians at St. Barnabas Hospital in New Jersey from adding third party ooplasm (and thus foreign
mitochondrial DNA) to women’s eggs before fertilization and transfer. The FDA halted this on the
grounds that it was unauthorized gene transfer research, which required agency approval (which
would not be forthcoming). See President’s Council on Bioethics, Reproduction and Responsibility:
The Regulation of New Biotechnologies, 62.
68. Ibid., 36–37.
69. See Kass v. Kass, 696 N.E.2d 174 (N.Y. 1998); Litowitz v. Litowitz, 48 P.3d 261 (Wash.
2002); In re Marriage of Rooks, 429 P.3d 579 (Colo. 2018); Davis v. Davis, 842 S.W.2d 588 (Tenn.
1992). Finding no enforceable contract, the Tennessee Court ultimately granted custody of the
embryos to the ex-husband (who planned to destroy them) so as to vindicate his right to avoid
procreation. Davis v. Davis, 842 S.W.2d 588 (Tenn. 1992).
70. See A. Z. v. B. Z., 725 N.E.2d 1051 (Mass. 2000).
71. See J. B. v. M. B., 783 A.2d 707 (N.J. 2001); In re Marriage of Witten, 672 N.W.2d 768
(Iowa 2003).
72. In the 2018 case of In re Marriage of Rooks, the Colorado Supreme Court announced a
balancing test for weighing the competing interests, but remanded the case to the lower courts to
apply to the facts of the case. In re Marriage of Rooks, 429 P.3d 579 (Colo. 2018). A small number of
intermediate state appellate courts have awarded custody to the party seeking to implant the embryos
and give birth to the resulting child, especially where they conclude that this is the only remaining
option for procreation available to that party.
73. In 2018, the Arizona legislature passed a law declaring that in the case of a custody dispute
over embryos, “the court shall award the in vitro embryos to the spouse who intends to allow the in
vitro embryos to develop to birth.” Ariz. Rev. Stat. Ann. § 25–318.03 (2018).
74. See Nicole Pelletiere, “Surrogate Mom Who Kept Baby with Down Syndrome Says Toddler
Is Hitting Milestones,” ABC News, April 19, 2016, https://abcnews.go.com/Lifestyle/surrogate-mom-
baby-syndrome-toddler-hitting-milestones/story?id=38486518.
75. See Bradford Richardson, “Surrogate Mother Refused to Abort Baby after Heart Defect
Found,” Washington Times, December 27, 2017, https://www.washingtontimes.com/news/2017/dec
/26/surrogate-mother-refused-abort-baby-heart-defect/; Jessica Schladebeck, “Surrogate Calls for
Law Change a Year after She Refused to Abort Baby,” NY Daily News, December 22, 2018, https://
www.nydailynews.com/news/national/ny-news-surrogate-law-change-refused-abortion-20181222-
story.html.
76. Petition for Writ of Certiorari, Cook v. Harding, 139 S.Ct. 72 (2018) (No. 17–1487).
77. “Surrogate Mom Carrying Triplets Fights Biological Parents on Abortion,” CBS News,
December 17, 2015, https://www.cbsnews.com/news/surrogate-mom-with-triplets-fights-biological-
parents-on-abortion/.
78. The President’s Council on Bioethics, Reproduction and Responsibility: The Regulation of
New Biotechnologies, xliii.
79. Ibid.
80. Ibid.
81. Ibid., xliv.
82. Ibid.
83. Robertson, Children of Choice, 22.
84. Ibid., 4.
85. Ibid.
86. Ibid., 24.
87. Ibid., 35.
https://abcnews.go.com/Lifestyle/surrogate-mom-baby-syndrome-toddler-hitting-milestones/story?id=38486518
https://www.washingtontimes.com/news/2017/dec/26/surrogate-mother-refused-abort-baby-heart-defect/
https://www.nydailynews.com/news/national/ny-news-surrogate-law-change-refused-abortion-20181222-story.html
https://www.cbsnews.com/news/surrogate-mom-with-triplets-fights-biological-parents-on-abortion/
88. Ibid., 24.
89. Ibid., 35.
90. Ibid., 30.
91. Ibid., 33.
92. Ibid.
93. Ibid., 102.
94. John Robertson, “Procreative Liberty and Harm to Offspring in Assisted Reproduction,”
American Journal of Law and Medicine 30 (2004): 15.
95. Ibid., 8 (citing Derek Parfit, Reasons and Persons [Oxford: Oxford University Press, 1984],
chap. 16).
96. Robertson, “Procreative Liberty and Harm to Offspring in Assisted Reproduction,” 14.
97. Ibid., 25.
98. Ibid., 39.
99. Dr. Gerald Schatten, “Session 6: Assisted Reproductive Technologies in the Genomics Era”
(testimony, President’s Council on Bioethics, December 13, 2002).
100. The law need not be frustrated in this aspiration by Robertson’s appeal to the “nonidentity”
problem. The law is supple and dynamic enough to offer protections to vulnerable persons in the face
of highly complex relationships of duty, cause, and effect. There are, in fact, ample resources to draw
upon in the law of torts (particularly regarding rules relating to negligence and causation) for
guidance. This, however, is beyond the scope of the present inquiry.
101. Gil Meilaender, Bioethics: A Primer for Christians, 3rd ed. (Grand Rapids, MI: Williams B.
Eerdmans Publishing Company, 2913), 10–25.
102. See Michael Tooley, “Abortion and Infanticide,” Philosophy and Public Affairs 2 (Autumn
1972): 37–65; Mary Anne Warren, “On the Moral and Legal Status of Abortion,” The Monist 57
(January 1973): 43–61.
103. Jonathan Alter, “The Pro-Cure Movement,” Newsweek, June 6, 2005, 27.
104. See, e.g., the statement of Dr. Hynes on Ira Flatow, “Stem Cell Research and Policy,” NPR,
Science Friday, April 29, 2005 (stating that before the primitive streak occurs at 14 days, the embryo
is really just an “undistinguished, undifferentiated ball of cells”).
105. “2016 National Summary Report,” 18, 44.
106. See, e.g., Rita Vassena et al., “Waves of Early Transcriptional Activation and Pluripotency
Program Initiation During Human Preimplantation Development,” Development 138 (2011): 3699–
3709 (“Carefully timed genome-wide transcript analyses of single oocytes and embryos uncovered a
series of successive waves of embryonic transcriptional initiation that start as early as the 2-cell
stage. In addition, we identified the hierarchical activation of genes involved in the regulation of
pluripotency.”); Anthony T. Dobson et al., “The Unique Transcriptome through day 3 of Human
Preimplantation Development,” Human Molecular Genetics 13 (2004): 1461–1470 (“First, we found
that a complex pattern of gene expression exists; most genes that are transcriptionally modulated
during the first three days following fertilization are not upregulated, as was previously thought, but
are downregulated.… Third, we show that embryonic transcriptional programs are clearly established
by day 3 following fertilization, even in embryos that arrested prematurely with 2-, 3- or 4-cells.);
Michael Antczak and Jonathan Van Blerkom, “Oocyte Influences on Early Development: the
Regulatory Proteins Leptin and STAT3 are Polarized in Mouse and Human Oocytes and
Differentially Distributed with the Cells of the Preimplantation Stage Embryo,” Molecular Human
Reproduction 3 (1997): 1067–1086 (“The findings demonstrate that both leptin and STAT3 are
polarized in the oocyte and, as a consequence of their location and the position of the cleavage planes
with respect to these protein domains: (i) differences in allocation of these proteins between
blastomeres occur at the first cell division such that by the 8-cell stage; (ii) unique cellular domains
consisting of leptin / STAT3 rich and leptin / STAT3 poor populations of cells are generated. By the
morula stage, a cell-borne concentration gradient of these proteins extending along the surface of the
embryo is observed.”); Asangla Ao et al., “Transcription of Paternal Y-linked Genes in the Human
Zygote as Early as the Pronucleate State,” Zygote 2 (1994): 281–287 (“ZFY transcripts were detected
as early as the pronucleate stage, 20–24 h post-insemination in vitro and at intermediate stages up to
the blastocyst stage.”); P. Braude et al., “Human Gene Expression First Occurs Between the Four-
and Eight-Cell Stages of Preimplantation Development,” Nature 332 (1988): 459–461 (“We describe
here changes in the pattern of polypeptides synthesized during the pre-implantation stages of human
development, and demonstrate that some of the major qualitative changes which occur between the
four- and eight-cell stages are dependent on transcription.”). For data on embryo-directed post-
implantation development, see Deglincerti et al., “Self-organization of the In Vitro Attached Human
Embryo,” Nature 533 (2016): 251–254; Shahbazi et al., “Self-organization of the Human Embryo in
the Absence of Maternal Tissues,” Nature Cell Biology 18 (2016): 700–708 (“[O]ur results indicate
that the critical remodelling events at [days 7–11] of human development are embryo-autonomous,
highlighting the remarkable and unanticipated self-organizing properties of human embryos.”).
107. Jessica R. Kanter et al., “Trends and Correlates of Monozygotic Twinning After Single
Embryo Transfer,” Obstetrics & Gynecology 125 (2015): 111.
108. La. Stat. Ann. § 9:121–133 (1986).
5. DEATH AND DYING
1. Cruzan v. Director, Missouri Department of Health, 497 U.S. at 270.
2. In re Quinlan, 355 A.2d 647 (N.J. 1976).
3. Ibid., 663.
4. Cruzan v. Director, Missouri Department of Health, 497 U.S. at 278.
5. Ibid., 279 (emphasis added).
6. The Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative State,”
New England Journal of Medicine 330 (1994): 1499–1508 (citing B. Jennett and F. Plum, “Persistent
Vegetative State after Brain Damage: A Syndrome in Search of a Name,” Lancet 1 (1972): 734–737).
7. Ibid., 1500.
8. In re Quinlan, 355 A.2d at 664.
9. Ibid., 671.
10. President’s Council on Bioethics, Taking Care: Ethical Caregiving in Our Aging Society,
September 2005, https://bioethicsarchive.georgetown.edu/pcbe/reports/taking_care/chapter2.html,
60.
11. In re Guardianship of Browning, 568 So.2d 4, 13 (Fla. 1990) (citing In re Guardianship of
Browning, 543 So.2d 258, 269 [Fla. Dist. Ct. App.]).
12. Cruzan v. Director, Missouri Department of Health, 497 U.S. at 284.
13. In re Conroy, 486 A.2d 1209, 1232 (N.J. 1985).
14. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, Deciding to Forego Life-Sustaining Treatment, March 1983, https://repository
.library.georgetown.edu/bitstream/handle/10822/559344/deciding_to_forego_tx ?sequence=1,
135.
15. Patient Self-Determination Act of 1990, Public Law 101–508, U.S. Statutes at Large 104
(1990): 1388–115.
16. President’s Council on Bioethics, Taking Care, 70–71.
17. Ibid., 68.
18. Ibid.
https://bioethicsarchive.georgetown.edu/pcbe/reports/taking_care/chapter2.html
https://repository.library.georgetown.edu/bitstream/handle/10822/559344/deciding_to_forego_tx ?sequence=1
19. “Nearly Two-Thirds of Americans Don’t Have Living Wills—Do You?” PR Newswire,
March 21, 2016, https://www.prnewswire.com/news-releases/nearly-two-thirds-of-americans-dont-
have-living-wills—do-you-300238813.html.
20. President’s Council on Bioethics, Taking Care, 72 (citing N.A. Hawkins et al.,
“Micromanaging Death: Process Preferences, Values, and Goals in End-of-Life Medical Decision
Making,” Gerontologist 45 (2005): 107–117). The Hawkins study found that “[t]he majority of
participants believed that surrogates should have some leeway to override the patients’ preferences if
they believed it would be best for patients. A substantial proportion of each group believed that
surrogates should have ‘a lot’ or ‘complete’ leeway, whereas only 9 percent believed the surrogate
should have ‘no’ leeway. Patient–surrogate agreement was somewhat low (40 percent) but better than
chance alone (j = .12, p, .001).” Hawkins et al., “Micromanaging Death,” 110.
21. President’s Council on Bioethics, Taking Care, 73 (citing Amy Fagerlin and Carl Schneider,
“Enough: The Failure of the Living Will,” Hastings Center Report 34, no. 2 (2004): 33).
22. President’s Council on Bioethics, Taking Care, 74 (citing Fagerlin and Schneider, “Enough,”
34).
23. Ibid.
24. President’s Council on Bioethics, Taking Care, 74–75 (citing Fagerlin and Schneider,
“Enough,” 35).
25. President’s Council on Bioethics, Taking Care, 77.
26. Andrew Firlik, “Margo’s Logo,” Journal of the American Medical Association 265 (1991):
201.
27. Ronald Dworkin, Life’s Dominion: An Argument About Abortion, Euthanasia, and Individual
Freedom (New York: Knopf, 1993), 221–222.
28. Rebecca Dresser, Dworkin on Dementia: Elegant Theory, Questionable Policy, Hastings
Center Report 25, no. 6 (1995): 35.
29. President’s Council on Bioethics, Taking Care, 89.
30. Ibid., 90.
31. Or. Rev. Stat. Ann. § 127.800–897 (1995).
32. Rev. Code Wash. § 70.245 (2009).
33. Baxter v. State, 224 P.3d 1211 (Mont. 2009).
34. Vt. Stat. Ann. tit. 18 § 5281–5293 (2013); Cal. Health & Safety Code § 443 (2016); Colo.
Rev. Stat. Ann. § 25–48 (2016); D.C. Code § 7–661 (2017); Haw. Rev. Stat. Ann. § 327L (2018);
N.J. Stat. Ann. § 26:16 (2019); Me. Stat. tit. 22, §2140 (2019).
35. See “Question 2: Physician-assisted Suicide,” Boston.com, http://archive.boston.com/news
/special/politics/2012/general/mass-ballot-question-2-election-results-2012.html.
36. Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997).
37. Washington v. Glucksberg, 521 U.S. at 721.
38. Vacco v. Quill, 521 U.S. at 807–808.
39. Ibid., 808.
40. Morris v. Brandenburg, 376 P.3d 836 (2016); Myers v. Schneiderman, 85 N.E.3d 57 (2017).
41. Morris v. Brandenburg, 376 P.3d at 848.
42. Ibid., 857.
43. Or. Rev. Stat. Ann. § 127.880.
44. “Frequently Asked Questions: Oregon’s Death with Dignity Act (DWDA),” Oregon Health
Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch
/deathwithdignityact/pages/faqs.aspx#deathcert.
45. Or. Rev. Stat. Ann. § 127–800.
46. Ibid.
https://www.prnewswire.com/news-releases/nearly-two-thirds-of-americans-dont-have-living-wills%E2%80%94do-you-300238813.html
http://archive.boston.com/news/special/politics/2012/general/mass-ballot-question-2-election-results-2012.html
https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/faqs.aspx#deathcert
47. Or. Rev. Stat. Ann. § 127–840.
48. “Frequently Asked Questions: Oregon’s Death with Dignity Act (DWDA),” Oregon Health
Authority. He or she must also issue a written request, signed by two witnesses (though there are no
restrictions on who these might be).
49. Or. Rev. Stat. Ann. § 127-815–820.
50. Or. Rev. Stat. Ann. § 127–825.
51. Or. Rev. Stat. Ann. § 127–815(c)(E).
52. Or. Rev. Stat. Ann. § 127–815(f).
53. See Herbert Hendin and Kathleen Foley, “Physician-Assisted Suicide in Oregon: A Medical
Perspective,” Michigan Law Review 106 (2008): 1628; Oregon Health Authority, Public Health
Division, Oregon Death with Dignity Act: 2018 Data Summary, April 25, 2019, https://www.oregon
.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/documents/year21 ,
14.
54. Or. Rev. Stat. Ann. § 127–885.
55. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2018
Data Summary, 5.
56. Ibid., 8.
57. Dr. K. Hedberg of Oregon Department of Human Services, “Assisted Dying for the
Terminally Ill Bill, Volume II: Evidence,” (testimony, British House of Lords, December 9, 2004),
http://www.publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86ii , 62.
58. Center for Disease Prevention & Epidemiology, Oregon Health Division, A Year of Dignified
Death, March 16, 1999, https://www.oregon.gov/oha/ph/DiseasesConditions/CommunicableDisease
/CDSummaryNewsletter/Documents/1999/ohd4806 .
59. The precursor organization to Compassion and Choices was named “The Hemlock Society.”
60. Brief for Ronald Dworkin, Thomas Nagel, Robert Nozick, John Rawls, Thomas Scanlon, and
Judith Jarvis Thomson as Amici Curiae in Support of Respondents, Washington v. Glucksberg, 521
U.S. 702 (1997) and Vacco v. Quill, 521 U.S. 793 (1997) (Nos. 95-1858, 96–110).
61. Ibid.
62. John Boone, “11 Emotional Quotes from Brittany Maynard, The Newlywed Choosing to End
Her Life at 29,” ET Online, October 16, 2014, https://www.etonline.com/fashion/152632_11
_emotional_quotes_from_brittany_maynard_the_newlywed_choosing_to_end_her_life_at_29.
63. See “Compassion & Choices Partnership with Brittany Maynard Is Making Historic
Success,” Compassion & Choices, https://compassionandchoices.org/compassion-choices-
partnership-brittany-maynard-making-historic-success/.
64. Linda Anguiano et al., “A Literature Review of Suicide in Cancer Patients,” Cancer Nursing
35, no. 4 (2012): E14.
65. Ibid., E23–E24.
66. National Cancer Institute, “Depression (PDQ®)—Health Professional Version,” updated
April 18, 2019, https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq (citing
Anguiano et al., “A Literature Review of Suicide in Cancer Patients,” E23).
67. Henry O’Connell et al., “Recent Developments: Suicide in Older People,” British Medical
Journal 329 (2004): 895–896.
68. Ibid., 897.
69. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2018
Data Summary, 8, 10.
70. Or. Rev. Stat. Ann. § 127.825.
71. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2018
Data Summary, 11. Only 4.5 percent of patients since 1998 have been referred for such evaluation.
https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/documents/year21
http://www.publications.parliament.uk/pa/ld200405/ldselect/ldasdy/86/86ii
https://www.oregon.gov/oha/ph/DiseasesConditions/CommunicableDisease/CDSummaryNewsletter/Documents/1999/ohd4806
https://www.etonline.com/fashion/152632_11_emotional_quotes_from_brittany_maynard_the_newlywed_choosing_to_end_her_life_at_29
https://compassionandchoices.org/compassion-choices-partnership-brittany-maynard-making-historic-success/
https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq
Ibid.
72. Neil M. Gorsuch, The Future of Assisted Suicide and Euthanasia (2006; repr., Princeton, NJ:
Princeton University Press, 2009), 118.
73. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2018
Data Summary, 13.
74. Ibid., 12.
75. Ibid.
76. Ibid.
77. Ibid., 10.
78. Ibid.
79. Oregon Health Authority, Prioritized List of Health Services: January 1, 2020, “Statement of
Intent 1: Palliative Care,” SI-1, https://www.oregon.gov/oha/HPA/DSI-HERC/PrioritizedList/1-1-
2020%20Prioritized%20List%20of%20Health%20Services (“It is NOT the intent of the
Commission that coverage for palliative care encompasses those treatments that seek to prolong life
despite substantial burdens of treatment and limited chance of benefit.”); see also ibid., “Guideline
Note 12, Patient-Centered Care of Advanced Cancer,” GN-5 (“Treatment with intent to prolong
survival is not a covered service for patients who have progressive metastatic cancer with: A) Severe
co-morbidities unrelated to the cancer that result in significant impairment in two or more major
organ systems which would affect efficacy and / or toxicity of therapy; OR B) A continued decline in
spite of best available therapy with a non-reversible Karnofsky Performance Status or Palliative
Performance score of <50 percent with ECOG performance status of 3 or higher which are not due to
a pre-existing disability.”).
80. For example, among patients who died by assisted suicide in 2018, the longest duration of
days between first request for the lethal drugs and the death of the patient was 807 days, far longer
than six months. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act:
2018 Data Summary, 13.
81. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2018
Data Summary, 12.
82. Ibid.
83. J. Ballentine et al., “Physician-Assisted Death Does Not Improve End-of-Life Care,” Journal
of Palliative Medicine 19, no. 5 (2016): 479–480.
84. Ibid.
85. Members of the Task Force on Life and the Law, When Death is Sought—Assisted Suicide
and Euthanasia in the Medical Context, May 1994, https://www.health.ny.gov/regulations/task_force
/reports_publications/when_death_is_sought/preface.htm.
86. See Eduard Verhagen et al., “The Groningen Protocol—Euthanasia in Severely Ill
Newborns,” New England Journal of Medicine 352 (2005): 959–962.
87. H.B. 2232, 80th Leg. Assemb., Reg. Sess. (Or. 2019).
88. See National Council on Disability, The Danger of Assisted Suicide Laws, October 9, 2019,
https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508 .
89. Brief of the American Medical Association, the American Nurses Association, and the
American Psychiatric Association, et al., as Amici Curiae in Support of Petitioners, Vacco v. Quill,
521 U.S. 793 (1997) (No. 95-1858) (citing Herbert Hendin, “Seduced by Death: Doctors, Patients,
and the Dutch Cure,” Issues in Law & Medicine 10, no. 2 (1994): 129).
90. Paul Appelbaum, “Physician-Assisted Death for Patients With Mental Disorders—Reason
for Concern,” JAMA Psychiatry 73, no. 4 (2016): 326.
91. Ibid.
https://www.oregon.gov/oha/HPA/DSI-HERC/PrioritizedList/1-1-2020%20Prioritized%20List%20of%20Health%20Services
https://www.health.ny.gov/regulations/task_force/reports_publications/when_death_is_sought/preface.htm
https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508
92. A contemporary example of the practice of these goods and virtues can be found in
communities such as the Little Sisters of the Poor who dedicate themselves to the genuine and
selfless service of and authentic friendship to the elderly poor.
ACKNOWLEDGMENTS
To borrow again the words of Bertrand Jouvenel, alongside my own efforts, this book is the
culmination of the “prolonged work of others,” to whom I am deeply indebted. I have been the
beneficiary of countless mentors, colleagues, students, friends, and family members, without whose
support this book would not have been possible.
The ideas for the book were fleshed out and refined at several conferences. I am grateful to the
organizers of and participants in the “Editorial Aspirations: Human Integrity at the Frontiers of
Biology” conference at Harvard University, especially Ben Hurlbut and Sheila Jasanoff; to Bill
Hurlbut and Jennifer Doudna for their roundtable discussion at Berkeley on the ethics of gene
editing; to Kevin Donovan and the organizers of the 16th Annual John Harvey Lecture at the
Pellegrino Center for Clinical Bioethics at Georgetown University; and to Robert Ingram and the
participants in the George Washington Forum at Ohio University.
Heartfelt thanks to all those who generously read and discussed the manuscript in its various
developmental phases, including Montse Alvarado, Ann Astell, Frank Beckwith, Father Justin
Brophy, Jeff Brown, Paolo Carozza, Monique Chireau, Maureen Condic, Farr Curlin, Barry
Cushman, Father Bill Dailey, Patrick Deneen, Richard Doerflinger, Rebecca Dresser, Justin Dyer,
Father Kevin Fitzgerald, Father Kevin Flannery, Nicole Garnett, Rick Garnett, Patrizia Giunti, Mary
Ann Glendon, Brad Gregory, John Haldane, Jim Hankins, Bruce Huber, Lauris Kaldjian, Peter
Kalkavage, Adam Keiper, Bill Kelley, Sean Kelsey, John Keown, Father John Paul Kimes, Randy
Kozel, Jonathan V. Last, Shannon Last, Sean Leadem, Liz Lev, Yuval Levin, Alasdair MacIntyre,
Ashley McGuire, Brian McGuire, Gil Meilaender, Anthony Monta, Michael Moreland, Phil Muñoz,
John O’Callaghan, Mary O’Callaghan, Gladden Pappin, Dan Philpott, Alex and Stephanie Pitts,
April Ponnuru, Ramesh Ponnuru, Vera Profit, John Ritsick, Rev. Eugene and Dr. Jackie Rivers,
Andrea Rovagnati, Abe Schoener, Father Michael Sherwin, Andrea Simoncini, David Solomon, Dan
Sulmasy, Chris Tollefsen, Luca Vanoni, Lorenza Violini, John Waters, Tom Williams, and Laura
Wolk.
Throughout this process I have been blessed by an extraordinary array of research assistants
from the University of Notre Dame. Chief among these were Tim Bradley and Aly Cox, whose
unparalleled brilliance, grit, and attention to detail were indispensable. Along with Tim and Aly, I
received outstanding research support from Brendan Besh, Hadyn Pettersen, Hope Steffensen,
Maryssa Gabriel, Gabriela Weigel, Sarah Clore, Audrey Beck, and Micheal Ganley.
I am grateful for the unwavering support of the peerless staff and dedicated advisory board
members of the de Nicola Center for Ethics and Culture at Notre Dame, including Laura Gonsiorek,
Margaret Cabaniss, Father Terry Ehrman, Pete Hlabse, Petra Farrell, Ken Hallenius, Tracy Westlake,
Hannah Brown, and Angie Lehner. Special thanks to Tony and Christie de Nicola, Sean and Kari
Tracey, David and Susan Bender, Jen and John Besh, John and Kathy Gschwind, Mark Filip, Tony
and Phyllis Lauinger, Kathy Craft, David and Lisa Fischer, Mike and Maureen Ferguson, Terry
Seidler, Mary Hallan Fiorito, Joan and Bob Cummins, Steve and Claudia Sefton, Doug and Cher
Abell, Patricia Myser, Neil and Anne Ramsey, John and Kristine DeMatteo, Kevin and Fran Fleming,
and Steve and Ellen Rasch.
Many thanks to the strong and constant support of my wonderful colleagues at Notre Dame not
already mentioned above, including Deans Marcus Cole, Sarah Mustillo, Martijn Cremers, Dean
Emeritus John McGreevy, Jerry McKenny, Jess Keating, Dan Kelly, Jeff Pojanowski, Christian
Smith, John Finnis, Patrick Griffin, Bill Mattison, and John Cavadini.
I am profoundly grateful for the unflagging and generous support, encouragement, and counsel
of my dear friend Steve Wrinn, Director of Notre Dame Press.
I will always be grateful to the members and staff of the President’s Council on Bioethics,
including especially my treasured mentor and friend, Chairman Leon Kass. In addition to those
already mentioned above, I am indebted in particular to the late Ed Pellegrino, Robby George, Frank
Fukuyama, Don Landry, James Q. Wilson, Bill May, Michael Sandel, Paul McHugh, Diana Schaub,
Eric Cohen, Carl Schneider, Adam Schulman, Dick Roblin, and Dean Clancy.
Special thanks, as always, to my dear longtime mentors and friends, Nick Maistrellis, Judge Paul
J. Kelly, Jr., and Peter Edelman.
I owe a particular debt of gratitude for the amazing work and support of my brilliant editor at
Harvard University Press, Janice Audet, and her colleagues Emeralde Jensen-Roberts and Diane
Cipollone (of Westchester Publishing Services).
Finally, the greatest debt of all is owed to my family, including my mother, Rosemary Snead; my
sister and brother-in-law, Kara and Rob Brendle; my in-laws, Dianne and Frank Mrazeck and the late
William P. Fitzpatrick; and most of all to my beloved bride Leigh and our beautiful sons, Orlando,
Bruno, and Carlo.
INDEX
abortion regulation based on: disability, 111, 123, 165; “health” of the woman, 111, 120–124, 142,
145–148, 152–155, 164, 170; life of the woman, 121–123, 142, 145, 154; rape or incest, 111, 123,
142
Aderholt, Robert, 61, 206
Aderholt Amendment, 206
advance directive, 241–242, 244–247
American Bar Association, 46
American College of Obstetricians and Gynecologists, 154
American Medical Association (AMA), 18, 46, 152, 154, 252, 266
American Society for Reproductive Medicine (ASRM), 207, 212–213
Applebaum, Paul, 266–267
Arieli, Yehoshua, 73
assisted suicide, 51, 55, 60, 62, 107, 234–236, 252–268, 271–272; history of state legalization, 253–
254
Augustine, 66
Barnard, Christiaan, 28
Beecher, Henry, 17–21, 23, 27–30, 32, 37, 39, 105
Beesly, Pam, 104
Bellah, Robert, 72, 86, 94, 96; on communities of memory, 104; on expressive individualism, 5, 68–
69; on expressivism, 79–81; on individualism, 74–75
Belmont Report, 44–45
Berliner, Robert, 25
Berman, Richard, 34
Blackmun, Harry, 113–114, 117–121, 124, 131, 134–135, 137–140
bodily dependence (as an argument for abortion), 125–126, 130, 133–135, 139, 147, 167
Boethius, 66
Born-Alive Infants Protection Act of 2002, 58
Bowen v. American Hospital Association, 47
Brown, Louise, 44, 187
Buber, Martin, 72
Bush, George W., 54–58
Buxton, Peter, 23
Byron, Lord, 82–83
California Proposition 71, 56
Cano, Sandra, 158
Carhart, LeRoy, 153–155
Cassirer, Ernst, 66
Centers for Disease Control (CDC), 51, 188, 193, 196, 198–203
Chevalier, Michel, 73
Child Abuse Prevention and Treatment Act, 47
Church Amendments, 43
Church, Frank, 43
Church, George, 61
Clinton, William, 52–54, 58, 152
Cohn, Victor, 17
Compassion and Choices, 253, 256–258
contraception, 29, 112, 114, 128, 144, 158, 163, 187, 214. See also Griswold v. Connecticut
Cook, Melissa, 210
Cruzan v. Director, Missouri Department of Health, 54, 236–237, 240
D&X abortion procedure, or “intact dilation and extraction” abortions, 58, 150–158, 161, 164, 166
Davis v. Davis, 51
Death with Dignity Act (Oregon), 253, 255–256, 259–263
Declaration on Human Cloning, 57
de Jouvenel, Bertrand, 89–90, 95
de Molina, Tirso, 83
Department of Health and Human Services (HHS), 36, 48–49, 53–54, 59
Department of Health, Education, and Welfare (HEW), 41–42, 44
de Tocqueville, Alexis, 73–74, 94, 96
Dickey-Wicker Amendment, 53–54, 204
disability: and abortion, 111, 133, 172, 179, 182; and an anthropology of embodiment, 3, 8–9, 89, 97,
101–102, 179, 182, 229, 248, 270–271; and assisted reproduction, 199–200, 225, 229; and end-of-
life care, 43, 46–47, 59, 62, 238, 248, 250–251, 254, 259, 263, 265–267, 270; and expressive
individualism, 7, 13; and human subjects research, 16, 19, 34, 37, 39–40
dismemberment abortion procedure, 165–166
Doe v. Bolton, 110, 122–125, 134, 136–138, 146–148, 152–153, 158, 164, 170
Dolly the Sheep, 53
Doudna, Jennifer, 60
Down Syndrome, 165, 195, 209
Due Process Clause, 55, 113–114, 117, 119, 122, 124, 135, 163, 253. See also Fourteenth
Amendment
Dunn, Chris, 62
Dworkin, Ronald, 243, 247, 257
Edwards, Robert G., 186–187
embryos, frozen, 51, 188, 195, 197, 208–209, 219, 227, 230
Emerson, Ralph Waldo, 80
equality (as an argument for abortion), 106, 157–159, 168
Equal Protection Clause, 55, 117, 119, 135, 254. See also Fourteenth Amendment
euthanasia, 107, 235–236, 254–255, 264–265
Evans, John, 67, 95
expressive individualism, 5, 7, 45, 68–73, 75, 79–81, 85–89, 91–96, 103–105, 109, 137–140, 146–
150, 168–169, 172–177, 180, 191, 212–213, 219–221, 230, 232, 243–244, 248, 252, 254, 259,
267, 270, 272
Fagerlin, Amy, 245–246
FDA, 48, 187, 204–206
Fertility Clinic Success Rate and Certification Act (FCSRCA), 51, 202–203, 211
Firlik, Andrew, 247
Fletcher, Joseph, 66
Flower Generation, 85
Fourteenth Amendment: on abortion, 116–117, 121–122, 143; on assisted suicide, 253–254; on
Lochner v. New York, 113; on personhood, 119, 131, 135, 139, 168; on substantive due process,
112–114, 142–143, 163
Friendly, Henry 116
fundamental rights, 113–116, 118–119, 122, 133–134, 138, 144, 166–167, 169
Gaull, Jerald, 25–26
genetic screening of embryos, 189–190. See also preimplantation genetic diagnosis (PGD)
Glendon, Mary Ann, 105
Goethe, 82–83
Gonzales v. Carhart (Carhart II), 58, 110, 150, 154–159, 161
Gosnell, Kermit, 29, 63, 160
Gray, Fred, 30
Griswold v. Connecticut, 112, 116, 118, 237. See also contraception; Ninth Amendment
Groningen Protocol, 265
Gustafson, James, 66
Harris v. McRae, 49–50
Haskell, Martin, 150–151
Hawthorne, Nathaniel, 80
Hayek, Frederich, 72
HB-2, 159–160
health: definition of, 2, 5, 14–15, 106, 188, 190, 207, 219–220. See also abortion regulation based on:
“health” of the woman
Health Research Extension Act, 48
Hellegers, Andre, 34–35
Heller, Jean, 21, 23
Herder, Johann, 82
Hern, Warren, 152
Hobbes, Thomas, 71, 74–76
Hodes & Nauser MDs v. Schmidt, 166
Humphrey, Hubert, 30
Hyde Amendment, 43, 50
Hyde-Weldon Amendment, 59
ICSI. See Intracytoplasmic Sperm Injection
infanticide, 63, 129–130, 133, 151
informed consent, 15–16; in the abortion context, 52, 127, 136, 141, 146, 164; in the assisted
reproduction context, 204; in the end-of-life context, 236–237; in the research context, 32, 45, 49
In re Baby M, 50
In re Conroy, 240
In re Quinlan, 43–44, 237–239
Intracytoplasmic Sperm Injection (ICSI), 193–194, 200, 207, 217
in vitro fertilization (IVF), 44, 51–52, 107, 186–187, 202, 205–207, 216, 223, 227–231; process of,
191–200
Jiankui, He, 61
John Paul II, 72
Kant, Immanuel, 77
Kennedy, Anthony, 141–142, 153–158, 163, 167
Kennedy, Edward, 25, 27–28, 33–34
Kennedy Hearings, 27–35, 38, 105
liberty, 75, 78; in the abortion context, 106, 142–144, 148–149, 157, 163–164, 168–169; in the
assisted reproductive technology context, 209, 212, 214–220, 222, 228, 270. See also protected
liberty interests
living will. See advance directive
Locke, John, 66, 72, 74–75, 166–167
Long, Roderick, 71, 74, 76, 87
Machan, Tibor, 72, 74–75
MacIntyre, Alasdair, 69, 72–73, 79; on emotivism and expressive individualism, 85–86; on forgetting
the body and an anthropology of embodiment, 6, 88–92, 96–105; on networks of uncalculated
giving and graceful receiving, 7; on virtues of acknowledged dependence, 9
Maher v. Roe, 43
Marcel, Gabriel, 72
“Margo,” 247
May, William, 9, 100
Maynard, Brittany, 257–258
McMath, Jahi, 62
Medicaid, 43, 242, 262
Medicare, 242, 262
Meilaender, Gil, 174, 226
mental illness, 38, 252, 259–261
Milton, John, 83, 90
Mitalipov, Shoukhrat, 61
Mondale, Walter, 28
Mongar, Karnamaya, 160
Morris v. Brandenburg, 254, 264
Mounier, Emmanuel, 72
Mozart, 83
Myers v. Schneiderman, 254, 264
Nagel, Thomas, 257
National Institutes of Health (NIH), 20, 24–27, 48–49, 52–53, 57
National Organ Transplant Act (NOTA), 47
National Research Act, 31–33, 35–36, 42, 44
New York Task Force on Life and Law, 263–264
Nightingale, Stuart, 205
Ninth Amendment, 111–113; as applied in Griswold v. Connecticut, 112, 116, 118
Nixon, Richard, 30, 33
Nozick, Robert, 72, 257
Nuremberg Doctor’s Trial, 18
Obama, Barack, 57
Oregon, assisted suicide law. See Death with Dignity Act (Oregon)
Ott-Dahl, Andrea, 209
palliative medicine, 236, 255, 263, 268
parenthood, 2, 39, 89, 100–101, 103–104, 106, 170; and assisted reproduction, 187–188, 190, 208–
210, 218–225, 232–233, 273; unwanted parenthood and abortion, 118, 120, 124, 128, 134–135,
137–138, 142, 163, 172–176, 178–179, 181–182, 184, 272
Parfit, Derek, 217
Parks, Rosa, 30
partial birth abortion. See D&X abortion procedure
Partial Birth Abortion Ban Act, 58, 155–158, 161, 164
Pascal, Blaise, 101
Patient Self-Determination Act, 242
Pennsylvania Abortion Control Act, 52, 141, 145–146
persistent vegetative state, 238
personhood, 66, 107, 180; and the anthropology of embodiment, 108, 168, 179–180; and arguments
for abortion, 125–126, 129–136, 138–139, 143, 147, 157, 166, 168, 179–180; and assisted
reproduction, 208, 216, 228–229; and dying, 248; and expressive individualism, 70, 79, 104; and
the Fourteenth Amendment, 119, 131, 135, 139
PGD. See preimplantation genetic diagnosis
“Philosopher’s Brief,” the, 257
physician-assisted suicide. See assisted suicide
Planned Parenthood v. Casey, 51–52, 110, 120, 140–150, 153, 156–157, 161, 163–167, 176, 178,
257
Plato, 71
Policastro, Patricia, 34–35
Pollard, Charles, 30
“potential life,” the fetus as, 118, 121, 133, 135, 138, 164, 178
Pound, Roscoe, 104–105
preimplantation genetic diagnosis (PGD), 194–195, 207, 211, 218
President Bush’s Council on Bioethics, 186; on alternative sources of human pluripotent cells, 57; on
living wills and end-of-life decision-making, 242, 244–246, 249–251; on the regulation of new
biotechnologies, 56, 59, 198, 202–203, 207, 210, 220
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, 45–46, 240
privacy, right to: in the abortion context, 106, 112–114, 116, 118, 122, 124–125, 134, 137, 142–143,
157–158, 165, 168; in the assisted reproduction context, 209; in the end-of-life context, 43, 237–
239, 243
“procreative liberty,” 214–220, 222, 228, 271
protected liberty interests, 115, 144, 163, 237, 240
proxy decisionmakers, 44, 234, 239, 242, 245–246, 249–251
Quinlan, Karen Ann, 238
Rabb, Harriet, 54
Rawls, John, 77–78, 91, 257
Reagan, Ronald, 47
refusal of life-sustaining measures, 234–235, 237
Ricoeur, Paul, 72
Robbins, Frederick, 34
Robertson, John, 186, 213–220, 228
Roe v. Wade, 33, 42, 50–51, 106, 110–125, 131, 134–138, 140–148, 153, 157–159, 162, 165–167,
176, 178, 187, 237; the trimester framework, 120–122, 135, 145
Rousseau, Jean-Jacques, 81–82
Rudolph, Abraham, 26
Sandel, Michael, 69, 72–73, 104; on the ethic of giftedness, 100; on openness to the unbidden, 9,
100; on parenthood as a school of humility, 103; on the unencumbered self, 76–78, 86–87, 91–93
Scanlon, Thomas, 257
Scheler, Max, 67, 72
Schiavo, Terry, 59–60
Schmitz, Kenneth, 66
Schneider, Carl, 175, 245–246
Scott, Lester, 30
Scruton, Roger, 93
sex selection of embryos, 189, 195–196, 218, 220–221, 225
Shelley, Percy, 82
Shriver, Maria, daughter of Eunice and Sargent Shriver, 25
Smith, Adam, 71, 75
Solzhenitsyn, Aleksandr, 95
Spaemann, Robert, 72
Spielberg, Steven, 103
stare decisis, 143–144, 167
state abortion law history, 110–111, 117, 150, 152, 164–167
Stenberg v. Carhart (Carhart I), 124, 150, 152–154
Steptoe, Patrick G. See Edwards, Robert G.
strict scrutiny, 115, 118–119, 122, 136, 145, 162, 167
suicide, 259–260; the legal history of, 252–253
surrogacy, 50, 191, 194, 201, 209–210, 226–227
surrogate decisionmaker. See proxy decisionmakers
Tarantino, Quentin, 104
Taylor, Charles, 5, 69, 72–73, 79, 104; on atomism, 75–77; on the dialogical character of human life,
92; on expressive individualism and the reconfiguration of human self-understanding, 81–87, 91,
94, 96
Tennyson, Alfred, 83
terminal illness, 19, 40, 255, 257, 262–263, 265, 267, 272
termination of life-sustaining measures. See refusal of life-sustaining measures
Thomson, James, 54
Thomson, Judith Jarvis, 126–131, 134–135, 138, 140, 257
Thoreau, Henry David, 80
Three Parent Embryos, 206
Tooley, Michael, 129–130, 133–134, 136, 138–139, 179, 228
Torres, Brandyrose, 210
Tuskegee, 17, 21–24, 27, 29–30, 37–40, 105
Unborn Victims of Violence Act, 58
unchosen obligations, 6, 76, 87, 94, 137, 149, 172, 175, 182, 212, 224, 270
undue burden standard, 51–52, 145–146, 156, 160–161, 163–164
United Nations, 57, 227
Universal Declaration on Bioethics and Human Rights, 57
Vacco v. Quill, 55, 253, 257
viability: in the abortion context, 51, 121–122, 124, 134, 136, 138, 145–147, 153, 156, 161, 164–165,
170; in the research context, 48
violinist, the. See Thomson, Judith Jarvis
Warren, Mary Anne, 66, 129–134, 136, 138–139, 179, 228
Washington Evening Star, 17, 21
Washington Post, 17, 24–25, 34
Washington v. Glucksberg, 55, 253–254, 257, 264
Webster v. Reproductive Health Services, 50
Weldon, Dave, 56
Whitman, Walt, 80
Whole Woman’s Health v. Hellerstedt, 63, 110, 159–163, 167
Willowbrook, 20, 37–38, 40
Windom, Robert, 49
Wordsworth, William, 82
Yamanaka, Shinya, 57
Zhang, Feng, 60
Zoon, Kathryn, 205
Title Page
Copyright
Dedication
Contents
Introduction
1. A Genealogy of American Public Bioethics
2. An Anthropological Solution
3. In Cases of Abortion
4. Assisted Reproduction
5. Death and Dying
Conclusion
Notes
Acknowledgments
Index
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