500 words combined, 2 questions, books have been attached, include page numbers, NO PLAGIARISM
From
Chapter 2: An Anthropological Solution (O. Carter Snead pp.53-82): For this question, please briefly compare and contrast the central aspects of
Expressive Individualism [i.e., what Snead takes to be the anthropological paradigm underlying current American bioethics jurisprudence] with the
Anthropology of Embodiment [i.e., the proposed alternative anthropological paradigm that Snead thinks ought to undergird American bioethics jurisprudence].
From
Chapter 1: Reimagining the Self (Carl R. Trueman): For this question, 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.
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
From
Chapter 2: An Anthropological Solution (O. Carter Snead pp.53-82): For this question, please briefly compare and contrast the central aspects of
Expressive Individualism [i.e., what Snead takes to be the anthropological paradigm underlying current American bioethics jurisprudence] with the
Anthropology of Embodiment [i.e., the proposed alternative anthropological paradigm that Snead thinks ought to undergird American bioethics jurisprudence].
From
Chapter 1: Reimagining the Self (Carl R. Trueman): For this question, 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.
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
From
Chapter 2: An Anthropological Solution (O. Carter Snead pp.53-82): For this question, please briefly compare and contrast the central aspects of
Expressive Individualism [i.e., what Snead takes to be the anthropological paradigm underlying current American bioethics jurisprudence] with the
Anthropology of Embodiment [i.e., the proposed alternative anthropological paradigm that Snead thinks ought to undergird American bioethics jurisprudence].
From
Chapter 1: Reimagining the Self (Carl R. Trueman): For this question, 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.
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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