Medical Ethics Questions

500 words combined, books have been attached as well as questions.

1. According to “Chapter 1: A Genealogy of American Public Bioethics,” what is the basic, core argument of O. Carter Snead’s 
What It Means to Be Human? Which of the sections (list 2-3) from “Chapter 1: A Genealogy of American Public Bioethics” (pp. 13-64) did you find most interesting and why?

2. From the “Introduction” of 
The Way of Medicine by Farr Curlin and Christopher Tollefsen: Please briefly compare and contrast the 
provider of services model for medicine (pp. 2-4) with the 
Way of Medicine (pp. 4-6). Which model do you find more compelling, and why?

The Way of Medicine

NOTRE DAME STUDIES IN MEDICAL ETHICS AND BIOETHICS

O. Carter Snead, series editor

The purpose of the Notre Dame Studies in Medical Ethics and Bioethics
series, sponsored by the de Nicola Center for Ethics and Culture, is to
publish works that explore the ethical, cultural, and public questions arising
from advances in biomedical technology, the practice of medicine, and the
biosciences.

The Way of Medicine

Ethics and the Healing Profession

FARR CURLIN

and

CHRISTOPHER TOLLEFSEN

University of Notre Dame Press

Notre Dame, Indiana

Copyright © 2021 by the University of Notre Dame

Notre Dame, Indiana 46556

undpress.nd.edu

All Rights Reserved

Published in the United States of America

Library of Congress Control Number: 2021942665

ISBN: 978-0-268-20085-5 (Hardback)

ISBN: 978-0-268-20086-2 (Paperback)

ISBN: 978-0-268-20084-8 (WebPDF)

ISBN: 978-0-268-20087-9 (Epub)

This e-Book was converted from the original source file by a third-party
vendor. Readers who notice any formatting, textual, or readability issues are

encouraged to contact the publisher at undpress@nd.edu

mailto:undpress@nd.edu

To our spouses, Kimberly Curlin and Laurie Tollefsen,

who merit more thanks and praise

than we can possibly give here

CONTENTS

Preface: A Perplexed Physician
Acknowledgments

Introduction: A Profession in Crisis

ONE The Way of Medicine

TWO The Requirements of Practical Reason

THREE The Doctor-Patient Relationship

FOUR Autonomy and Authority

FIVE The Rule of Double Effect

SIX Sexuality and Reproduction

SEVEN Abortion and Unborn Human Life

EIGHT Medicine at the End of Life

NINE Last-Resort Options

TEN Conscientious Medicine

Notes
Index

PREFACE

A Perplexed Physician

I sensed early in my medical training that something had gone wrong at the
heart of our profession. I came to medical training confident that caring for
those who are sick would readily fit into my vocation as a Christian, not
because Christians have a lock on healing—by no means. Rather, because
everyone—whether Jew, Christian, Muslim, atheist, or other—knows that
healing is good work, even “God’s work.” I knew that modern physicians
had gotten involved in a few practices—elective abortion and assisted
suicide in particular—opposed both by traditional Christianity and by
traditional medical ethics. But these practices were on the margins, I
thought, exceptions to medicine’s otherwise consistent orientation toward
healing. It did not take long for me to realize that I was mistaken—that
these overtly controversial practices expressed deeper changes at the heart
of the medical profession. Having come over the second half of the
twentieth century to “provide” all kinds of interventions that were not so
obviously a part of healing those who are sick, physicians could no longer
say what it meant to heal. In seven years of medical school and residency
training, I do not recall a medical educator ever encouraging me or my
fellow trainees to consider what medicine is for.

How could we clinicians-in-training find our way if our teachers could not
tell us where that way leads? We learned to take our bearings by setting
aside the question of what medicine is for and instead focusing on getting
where we were asked to go as efficiently and effectively as possible. Those
were the heady days of evidence-based medicine. Medical educators
advocated “the conscientious, explicit, and judicious use of current best
evidence in making decisions about the care of individual patients.”¹
Unfortunately, our teachers had much less to say about what norms we

should conscientiously uphold and by what standards we should evaluate
whether our use of evidence had been judicious. The resulting vacuum was
filled with the default norm of contemporary medicine: support the
autonomous choices of patients as long as doing so is not illegal, infeasible,
or unequivocally harmful.

Indeed, the language of conscience and judgment proved to be the residue
of a tradition of practice that the profession of medicine seemed determined
to leave behind—a tradition associated with paternalism, patriarchy, and
other specters of a repressive past. To avoid recapitulating the injustices of
that past, we learned to ask not what ought to be done but who decides what
ought to be done. After all, what would give a physician the authority to
judge what is good for someone else? Shouldn’t patients decide what
happens to their bodies? We were taught various ethical principles we might
invoke to describe a clinical decision, but we also learned that in the end
only the patient could decide which of these principles should govern in
their particular case. Being “patient-centered,” we discovered, meant
respecting patients’ right to judge what is good for them. So we made
patient preferences our guide, and we resisted the temptation to impose our
own values under the pretense of conscience and clinical judgment. The
safest route was to separate the personal from the professional, keeping the
former from intruding on the latter.

I have never made peace with this notion of separating the personal from
the professional. I had set out to practice medicine because caring for the
sick seemed to fit into the Christian vocation to love God and one’s
neighbor. In training, however, Christian commitments largely were
construed as “personal values” that must be kept from interfering with my
professional obligations. While I puzzled over how that could be so, I
observed that separating the personal from the professional reified the
sterility and detachment of clinical encounters that left patients dissatisfied
and physicians dispirited.

How did we end up with this idea that medicine requires
compartmentalizing the personal away from the professional? How did
medical educators end up teaching that good physicians must be willing to
be bad Christians, Jews, or Muslims?

I did not find satisfying answers to these questions, but who was I to
challenge the status quo? This ancient profession went on before me and
will go on after me, whether I like it or not. Perhaps in time I would see that
by keeping my personal and professional lives separate, focusing on
scientific data, and deferring to others to tell me what to pursue, I would
become a better physician than I had imagined. I would find that to love my
neighbors means to do what they ask me to do even when that goes against
my better judgment. And if I could not reconcile my personal moral
sensibilities with the standards of the profession, I could find a different line
of work. I had not been conscripted, after all.

But further experience only confirmed my misgivings that the medical
profession had lost its way. Indeed, in the name of respect for patient
autonomy, the profession seemed to have given up any claim to know
where that way should lead. The medical profession trains its members to
defer to patients regarding what goals physicians are to pursue, reserving to
the clinician the authority only to insist that those ends be pursued in a
scientifically informed and effective manner. So, for example, a physician
cannot know whether he should sterilize a patient or offer her assisted
reproductive technologies until and unless the patient tells him what she
wants. The physician can decide, however, which surgical technique is most
effective for sterilization and which exogenous hormones will effectively
hyperstimulate the ovaries. Many medical ethicists likewise have
abandoned any claim to know what medicine is for. As a member of the
clinical ethics faculty at a premier academic medical center, I joined
colleagues in spirited debates about who was authorized to make a
particular clinical decision, but we almost never discussed what that person
should decide, or why. We had learned to police ourselves to avoid the
presumption of claiming to know what good medicine required for this or
that patient.

Meanwhile, in the hospital I watched countless physicians bend over
backward to give patients and their family members all the options for their
cases and to avoid “imposing” any judgment regarding what was best for
the patients. Physicians routinely would tell family members of critically ill
patients that the decision to continue or discontinue life-sustaining
technology was not the physicians’ to make, or even the family’s to make.

Rather, all were obligated to set aside their judgment about what would be
good for the patient and instead choose what the patient would choose if the
patient could choose for himself. When families did not choose as the
physicians hoped they would, the physicians would retreat to their
workrooms to grumble about unrealistic family members who were in
denial. Doctors resent continuing unreasonable efforts to keep patients
alive, but they do not see any other option. They have internalized the
axiom that only patients, or their surrogates, can say what is good for them.

The same demoralized ethos carried over into the outpatient setting, where,
for example, physicians were long taught that the patient’s pain was what
the patient said it was, and the physician was obligated to treat that pain
until the patient said it was relieved. Those of us who practice hospice and
palliative medicine have been taught that relieving pain and other
symptoms is not enough; we are also to maximize quality of life and to
minimize suffering. No one but the patient can say whether we have
achieved that goal, so we must follow patients’ preferences closely,
including their preferences regarding how and when to die.

Physicians have become particularly reticent to say what medicine is for in
the domain of sexuality and reproduction. A patient once asked me to
prescribe Viagra because he was having difficulty sustaining an erection
when having sex with his wife, though he had no such problems when with
his mistress. My colleagues were ambivalent as to how I should respond.
On one hand, it seemed strange to facilitate this man’s infidelity to his wife.
On the other, the drug was safe, legal, and permitted by the profession; who
was I to judge? A homosexual man whom I had treated for high blood
pressure asked me to help him and his partner figure out how to get a baby
through in vitro fertilization (IVF) using an anonymous egg donor and a
gestational surrogate. My colleagues were agreed that I should
accommodate his request, at least by referring the patient to the assisted
reproductive technology clinic. For a few years, I took night calls for my
university’s student health service, and some nights more students called to
ask for prescriptions for “emergency contraceptives” than called because
they were sick. I found myself asking, “What does giving people all of
these things they want have to do with practicing medicine?”

One might think that deferring to patients about the goals of medicine
would lead to greater patient satisfaction, but that is not what I have
observed. Instead, by relinquishing their professional authority, physicians
seem to have given third parties a free hand to intrude on and govern the
physicians’ experiences and their patients’, to the chagrin of both. Today,
patients and clinicians alike are harried by impersonal forces along paths
they hardly understand. Patients ask for whatever the latest pharmaceutical
commercial, or the latest social fashion or anxiety, recommends.
Meanwhile, doctors submit to the demands of Medicare and other insurers,
bean counters tracking relative value units (RVUs), and, most of all, the
electronic medical record. Practitioners may start by asking a patient, “How
can I help you today?,” but they soon turn their attention to the invisible
social engineer standing in the corner of every exam room, armed with a
checklist the doctor must follow in order to ensure that she provides quality
care that is safe and “value-based.” Neither patients nor physicians call the
shots, and both feel helpless to change the system.

Helplessness leads both to demoralization and to detachment. Why would
anyone want to practice medicine if doing so meant setting aside their
religious aspirations, their ethical judgment, and their longing to connect
with patients on a human level? Why would anyone aspire to serve as an
efficient cog in a vast, bureaucratically structured healthcare industry? In
this situation, physicians and other healthcare practitioners give up the quest
to find—much less pursue—what medicine is for. The work to which
medical practitioners thought they were called becomes a job to tolerate.
Their patients present them not with the privilege of cooperating in pursuit
of healing but with the burden of satisfying demands that clinicians
frequently resent. Medical practitioners, then, need self-care and work-life
balance to mitigate the threat of medicine to their integrity and their
flourishing and to keep them from walking away from the practice of
medicine altogether. That, at least, is how it has seemed to me.

If you are a physician and this account resonates at all with your own
experience, this book is for you. Moreover, if you long to recover a way of
practicing medicine that can truly be seen as a “calling,” intrinsically
rewarding work to which you can happily commit the best of your time,
attention, and energy, then read on. We hope you will learn to better see and

to say what you know, and so be equipped to continue the worthy adventure
of practicing medicine.

THIS BOOK HAS been written by a practicing physician, Farr Curlin, and
a philosophy professor, Christopher Tollefsen. It grew out of a seminar we
have taught together for almost ten years, but it is inspired by what I have
experienced and observed in my training and practice as a clinician and
medical ethicist. Some readers may recognize in my account their own
unease and uncertainty about what medicine has become.

Farr Curlin, MD

ACKNOWLEDGMENTS

This book originated in an annual week-long seminar in medical ethics that
we have taught since 2011, initially sponsored by the Witherspoon Institute
in Princeton, New Jersey, and now by the Arete Initiative at Duke
University. We are indebted to those whose vision and leadership have
made the seminar possible, especially Robby George and Luis Tellez, as
well as those who have given hospitality to the scores of clinician trainees
who have joined us over the years, including Patrick Hough, Felix Miller,
Phil Braun, and John Rose. And we are indebted to our students in those
seminars, who have committed their lives to the practice of medicine and
whose sincere questions, contentions, and arguments made invaluable
contributions to this book.

Medicine, as we argue here, is a practice, as is the doing and teaching of
philosophy. We could never have gotten started in understanding either
practice without the help of our teachers, among whom Farr notes
particularly Drs. Carl Kraus, Mark Siegler, Daniel Sulmasy, and Leon Kass;
Chris acknowledges with gratitude three philosophers who have died since
our work on this book began: Joseph Boyle, Germain Grisez, and H.
Tristram Engelhardt.

As this book has taken shape over the past several years, a number of
colleagues have gifted us with their critiques of our arguments. We thank
Jason Amaral, Ryan Anderson, Jeff Baker, Jeffrey Bishop, Chip Denton,
Lydia Dugdale, H. Tristram Engelhardt, Nick Epley, Margaret Houck, Ana
Iltis, Lauris Kaldjian, Daniel Kim, Scott Kim, Warren Kinghorn, Brett
McCarty, Abraham Nussbaum, Brian Quaranta, Jon Tilburt, John Yoon, and
anonymous reviewers of the University of Notre Dame Press. None of these
agree with us on every point, and some disagree with us on major points.
The deficiencies of the book are our own, but these share credit for any of
the book’s merits, as do those who have helped us in the editing process,
including Judith Heyhoe, Luke Olsen, and Bob Land.

Farr is particularly grateful to colleagues at the Trent Center for Bioethics,
Humanities, and History of Medicine at Duke University and those in Duke
Divinity School’s Initiative on Theology, Medicine, and Culture (TMC).
Both of these institutional spaces foster unusually fertile environments for
inquiring about the moral and theological dimensions of the practice of
medicine. Chris thanks the James Madison Program at Princeton University,
the Eudaimonia Institute at Wake Forest University, and his own University
of South Carolina. Each has been home to some of the drafting of this book,
and colleagues and friends at each deserve much thanks.

We have written about many of the ideas in this book in other places. A
number of the arguments and examples appear elsewhere, in particular the
following, which are listed in the order in which they were published:

Farr Curlin, “Hospice and Palliative Medicine’s Attempt at an Art of
Dying,” in Lydia S. Dudgale, ed., Dying in the Twenty-First Century:
Toward a New Ethical Framework for the Art of Dying Well (Cambridge,
MA: MIT Press, 2015), 47–66.

Y. Tony Yang and Farr A. Curlin, “Why Physicians Should Oppose Assisted
Suicide,” Journal of the American Medical Association 315, no. 3 (2016):
247–248.

Christopher Tollefsen, “Abortion,” in Bob Fisher, Ethics, Left and Right:
The Moral Issues that Divide Us (New York: Oxford University Press,
2020), 340–48.

Farr A. Curlin and Christopher O. Tollefsen, “Medicine against Suicide:
Sustaining Solidarity with those Diminished by Illness and Debility,” in
Christian Bioethics, forthcoming.

Christopher Tollefsen and Farr Curlin, “Solidarity, Trust, and Christian
Faith in the Doctor-Patient Relationship,” Christian Bioethics, forthcoming.

In addition, an earlier version of chapter 10 was published as

Farr A. Curlin and Christopher O. Tollefsen, “Conscience and the Way of
Medicine,” Perspectives in Biology and Medicine 62, no. 3 (2019): 560–75,
reprinted with permission.

Introduction

A Profession in Crisis

Medical practitioners and those who want to become such practitioners face
basic questions: What is medicine? What is medicine for? What does it
mean to be a good doctor? Their answers seem essential to the practice of
medicine and to understanding its moral norms. The absence of answers to
these questions—or incoherent or incorrect answers—would seem to
prefigure a crisis for both medicine and medical ethics. For without correct
and coherent answers, practitioners of medicine cannot properly orient
themselves within their profession, nor even think of their practice as a
profession at all. And without some account of what the medical profession
professes—without an account of medicine’s purpose or end—ethicists rely
on norms that bear only contingent relationships to the activities of medical
professionals. Ethicists fail, in other words, to articulate an ethics of
medicine in the proper sense.

We believe that medicine, and hence medical ethics, is in precisely this sort
of crisis. Medicine has lost its way because it lacks clarity about where the
way should lead. We no longer have a shared public understanding of what
medicine is for, of what the end of medicine is or should be. Rather,
medicine has substituted for its once clearly recognized purpose something
amorphous, subjective, and shadowy. As a consequence, the norms that
medical professionals and professional ethicists bring to medical practice
are devoid of objective content and radically deficient for guiding doctors
and protecting patients.

THE PROVIDER OF SERVICES MODEL FOR MEDICINE

In answer to the question “What is medicine?,” according to the provider of
services model, medicine comprises a set of technical skills that are to be
put to work to satisfy patient-client preferences. Healthcare workers are
providers of services, and these services are undertaken for the sake of
patient well-being, understood principally in terms of satisfying the
patient’s wishes.¹

Every culture gets the medical practice it deserves, and in our culture
medical practice is dominated by a consumerist understanding, where well-
being is understood in terms of the patient’s desires being satisfied. Efforts
to identify an ethical framework capable of guiding practitioners and
patients in our time have resulted in consequentialism, contractarianism,
and, most prominently, principlism—the framework that gives us the
familiar “four principles” of medical ethics.² In the context of an
individualist and consumerist environment, however, these efforts all tend
to default to three norms: what the law permits, what is technologically
possible, and what the patient wants.

Thus, according to the provider of services model, if an intervention is
permitted by law, is technologically possible, and is autonomously desired
by the patient, medical practitioners should provide the intervention.
Indeed, they may be professionally obligated to do so.³ After all, these
norms fit our expectations of other providers of services. The good folks
who provide us with Wi-Fi or who make our double soy lattes do not bring
further considerations to bear on whether to give us what we want. They do
not consider the appropriateness of our desire for a double soy latte; they do
not ask what websites we’ll be visiting. We expect them to obey ordinary
norms of law and not defraud or deceive, but beyond that we expect them to
do as we wish (provided that they can perform the service, and we can pay).
There is no distinctive professional ethic for these practices because there is
no profession, no deep orientation to a good or set of goods, that gives
meaning and purpose to what they do.

Thus, in the provider of services model, the work of physicians becomes
demoralized, and its ethic becomes what the philosopher H. Tristram

Engelhardt has identified as a “morality of strangers.”⁴ One does not
knowingly do violence to the unconsenting innocent, to be sure. But within
the boundaries of law and consent, what is technically possible is ethically
permissible. That which is permissible and also desired may even be
ethically obligatory. Medical ethics reduces to a set of procedures for
negotiating noninterference with patients’ wishes to the greatest possible
extent. Medicine itself devolves into a powerful set of means to be used to
satisfy the preferences and desires of those who are authorized, legally and
procedurally, to choose.

Among the many consequences of the provider of services model, the
following three loom. First, professional authority has steadily eroded. If
there is no objective standard or end for medicine, physician expertise is
merely technical. Thus, instead of exercising the authority of expertise
within a sphere constituted by their professional commitments, physicians
become increasingly subject to the exercise of power by lobbyists and
political advocacy groups. Medical professionals come to work in a highly
regulated domain in which the exercise of clinical judgment and prudence is
neither possible nor desirable.

It’s no surprise, then, that declining professional authority is followed by a
second consequence: a crisis of medical morale. Insofar as medicine merely
provides desired services, its pretense of moral seriousness is a charade, and
its attempts at professionalism are a façade. The practice of medicine is
characteristically grueling, with long hours spent under taxing
circumstances. Is it surprising that physicians who experience themselves
largely as mere functionaries—asked to set aside traditional medical norms,
religious convictions, and their best judgment—suffer high rates of
burnout?⁵

Finally, when medicine is understood as the provision of healthcare
services, the physician’s judgment—and particularly the physician’s claims
of conscience—come to be seen in competition with the fundamental, but
minimal, norms of the profession. The exercise of physician conscience is
treated as the intrusion of “private” or “personal” concerns into transactions
that should be governed by physicians’ professional commitment to provide
legally permitted services to patients who request those services. Michael

and Tracy Balboni note that this artificial separation of the personal and
professional leads patients and clinicians to suppress and ignore their moral
and spiritual concerns, to the detriments of both.⁶ As a result, the medical
profession and society at large appear increasingly ready to abandon the
idea of the conscientious physician and to use the coercive powers of the
profession and the state to compel physicians to participate in practices that
violate norms that have guided medical practitioners for millennia.

THE WAY OF MEDICINE

What is our alternative vision for medicine? We call it the Way of
Medicine. The Way of Medicine offers physicians both a path out of the
provider of services model (PSM) and the resources necessary to resist the
various political, institutional, and cultural forces that constantly push
practitioners and patients to think of their relationship in terms of an
economic exchange. We attempt in this book to articulate and defend this
Way of Medicine.

Medicine as a Practice

We begin by arguing that medicine is a paradigmatic practice, elevated to a
profession because of its social importance, that aims at human health.
Health is an objective natural norm for any organism: the well-functioning
of that organism as a whole. Human health is also an objective human good:
our organic well-functioning is an aspect of our human flourishing.
Understood in this twofold way, health gives singular purpose to the
practice of medicine.

The PSM also concerns itself with health; no one, to our knowledge, denies
the importance of health to the practice of medicine. But under the PSM,

health is only a subjective and socially constructed concept. Therefore, the
norm of “health” is sufficiently malleable to justify pursuing almost any
desired bodily condition. In addition, many see health, however defined, as
only one among a number of goals toward which medicine might
reasonably be aimed. For the PSM, pursuing health is optional.⁷

In contrast, in the Way of Medicine, the good physician orients her practice
centrally around the good of health. Physicians need only pursue those aims
related to health, and the profession as a whole should, to the extent
possible, avoid entanglement with goods other than health—except when
necessary to understand and address patients’ health-related needs. In
detaching from the objective demands of health in favor of a broader and
more subjective mandate, the medical profession makes a grave mistake of
prudence. Such detachment erodes the grounds for treating medicine as a
profession rather than as a technical trade; the professional commitments of
medicine are watered down, and physicians find themselves lacking the
excellence that is made possible by sustained focus on a single good.

Physicians and other members of the medical profession must also,
according to the practice of medicine, resist inducements to act in ways that
contradict the good of health. This commitment dates back to Hippocrates
and the promise the physician makes in the Hippocratic Oath to “give no
deadly potion” nor “cause an abortion” no matter how much the physician
is implored to do so.⁸ In the Way of Medicine, physicians are always
justified in refusing to intentionally damage or destroy the good of health.
But this is very different from saying that physicians should avoid any
action that even indirectly injures health; the rule of double effect has for
centuries helped clinicians practicing the Way of Medicine to discern when
they can accept as side effects of health-oriented interventions harms that
they should never intend.⁹

The Way of Medicine obviously requires that physicians do more than
refuse to damage the good of health. Physicians must devote themselves to
that good, not in the abstract but as it bears on their patients’ concrete
needs. Medical practice is neither a pastime nor merely a career; it is a
profession, whose members make life-shaping commitments to care for

particular vulnerable persons. The patient necessarily occupies a privileged
position in the physician’s life, as a focal point of his concern and care. At
the same time, the physician who practices the Way of Medicine pursues
the health of his particular patients while mindful that health is not the only
good, nor are his patients the only ones in need.

The Requirements of Practical Reason

The Way of Medicine starts with attention to the kind of practice medicine
is and the good toward which medicine aims, but it does not stop there.
People who pursue the health of patients must do so in ways that respect the
broader demands of ethics. (We use the terms “ethics,” “morality,” and
“practical reason” interchangeably.) Put differently, the practice of medicine
has its own integrity, but that integrity depends on and is accountable to the
requirements of practical reason.

The requirements of practical reason have been known under a number of
names. One is natural law. Natural law is not law inscribed in the heavens
but rather the practical reason that directs persons to act. C. S. Lewis
identified another name, the Tao, as a synonym for practical reason and
natural law, which he describes as the “source of all value judgments.”¹⁰
These various names point to the same reality: practical reason’s
identification of that which is genuinely good for human beings—that is,
conducive to human flourishing—and the corollary implications as to what
we should do and how we should live.

What goods contribute to human flourishing? Practical reason identifies
several goods as giving human persons fundamental and basic reasons for
action: friendship, knowledge, and play are three examples. Human life and
health constitute another such good: we are better off, as individuals and in
community, if we are alive and healthy. Health is not good only in order to
achieve some other purpose; its goodness is what philosophers call basic.
We can reasonably preserve a life for its own sake; we can reasonably
pursue health simply in order to be healthy.

So practical reason gives us the principle that health should be valued and
pursued. What are the implications of that principle for the Way of
Medicine? Here we find that the internal norms of the practice of medicine
are strongly confirmed by what practical reason requires, unlike, say, the
internal norms of the practice of torture. Practical reason forbids us to
intentionally damage or destroy any basic human goods, including the good
of health. Practical reason thus adds to and deepens the norms internal to
medical practice, but it does not contradict those norms. In the Way of
Medicine, a practitioner focuses on the patient’s health but does so while
respecting and being guided by the fuller requirements of practical reason.

AN OPEN INVITATION

In this book we invite the reader to join us on a quest to investigate the Way
of Medicine. While we write primarily for those who are dissatisfied with
the PSM, we welcome any readers with an interest in contemporary
healthcare.

We do not intend to divide the medical profession into two starkly distinct
camps. We recognize that our description of the PSM may seem like a
caricature to some practitioners, who find themselves agreeing fully neither
with the PSM nor with our account of the Way of Medicine. These readers
may call themselves “providers,” but they are devoted to providing quality
healthcare and they take seriously the duty to do no harm to their patients’
health. Yet they also see much value in respecting patients’ choices and
providing healthcare services that align with what the patient believes is
good for him or her.

In fact, the PSM and the Way of Medicine both operate in the practices of
most clinicians—to different extents in different contexts. Few physicians
practice consistently within only one or the other, and the two accounts
coexist amicably so long as what patients want is for their practitioners to
use their best judgment to pursue the patients’ health. Most patients do want
just that most of the time. But ultimately, as we will show, the two accounts

are irreconcilable and the future of medicine will be determined by which
one governs the profession.

What might readers who deeply value what the PSM offers gain from
learning about the Way of Medicine? At a minimum, they will come to
understand what still attracts some of their colleagues to this once regnant,
but now contested, vision of medicine as an honorable profession. Even if
we fail to win over such readers, we can at least contribute to the promotion
of civility and mutual respect among those who disagree.

Still, in this book we speak primarily to those who are disposed to
recognize and affirm that human health is a good that medical practitioners
can know objectively and pursue conscientiously. The book is primarily for
people convinced that some real moral boundaries should never be
traversed—for example, physicians should never kill or deliberately harm
their patients, even when patients request it. These convictions still run deep
in the medical community, but those so convinced inhabit a culture and a
profession that have lost the language (and the arguments) to make sense of
these eminently reasonable propositions. Without such language, it can be
hard for physicians, ethicists, and even patients to find their way. In this
state of affairs, for example, we observe physicians who know that they
should never kill their patients and are deeply unsettled by medical and
societal pressures to the contrary but who have lost the language to talk
about how that commitment to life and health is integral to medicine. With
respect to such physicians and others, our task is to reintroduce a more
fitting vocabulary to make sense of what they already know.

If we succeed, our physician readers will leave this book with tools,
concepts, and arguments that help them practice medicine well while
enabling them to account for what they are up to as physicians. If our
argument is sound, such readers’ practice of medicine will have a coherence
and goodness that others will both admire and want to emulate. Professional
bioethicists and healthcare policymakers will also find resources to address
some of the most contested ethical issues of our day. Finally, those whom
the profession of medicine serves have something to gain, for our book
helps identify what patients can reasonably expect of medicine.

THE PROVIDER OF SERVICES MODEL IN HISTORICAL CONTEXT

A full history of what we call the provider of services model goes beyond
the scope of this book, but Gerald McKenney, in his book To Relieve the
Human Condition, traces the PSM’s roots to the writings of René Descartes
and Francis Bacon. Bacon saw in modern science the means to “relieve and
benefit the condition of man” by reducing suffering and expanding the
realm of human choice, ostensibly noble goals.¹¹ Unfortunately, as
McKenney observes, this imperative to relieve suffering and expand choice
finds in contemporary culture no larger framework of meaning in which to
discern which suffering should be relieved and which choices should be
accommodated. In the resulting moral vacuum, medicine comes to relieve
any condition that an individual experiences as a burden; maximizing
choice becomes the default.

What McKenney calls “the Baconian project” takes the human body to be
without any given purpose or end (telos)—without what Aristotle called a
final cause. Jeffrey Bishop, in The Anticipatory Corpse, traces out how
modern medicine was birthed historically and argues that the loss of a
teleological understanding of the body produced a medicine that treats the
body as so much matter in motion and death as simply the terminus of that
motion.¹² In Bishop’s account, contemporary medicine has come to have no
purpose except that which is given to it, post hoc, through the choices of
those socially empowered to do so—in our era, autonomous individuals. If
an individual chooses to use medicine in a certain way—to manipulate their
body in some way or even to cause their own death—the choosing itself is
taken to make that use of medical technology ethical.

Although McKenney, Bishop, and other critics of contemporary medicine
such as H. T. Englehardt and Stanley Hauerwas all have different points of
emphasis, each finds this turn toward maximizing choice and minimizing
suffering according to the wishes of the patient to impoverish medicine. All
urge, in different ways, the restoration of final causality (purpose) to our
understanding of life, death, and medical practice. All call for medicine to
be situated within an ethical framework in which illness and suffering, and
the practices of medicine, are understood against a vision of humans

flourishing as the mortal, rational animals that they are. The arguments we
make in this book intersect with, diverge from, and are indebted to the work
of these and other critics of contemporary medicine. However, our primary
task is to articulate and defend our own account, and so we do not trace
these intersections, divergences, or debts here at any length.

THE WAY OF MEDICINE AS A TRADITION

We have suggested that what we call the “the Way of Medicine” constitutes
the practice of medicine, deepened, corrected, and shaped by the
requirements of practical reason. Some readers may be suspicious of this
language because they doubt the existence of the Way of Medicine. Such
skepticism is likely to be heightened insofar as our account invokes the
Hippocratic “tradition” of medicine. As Bishop puts the point, “It is indeed
odd to think that there has been real continuity between Hippocrates and the
medicine of today.”¹³

The objection can be extended. Has not medicine always—the skeptic
might ask—encompassed arguments, exceptions, contradictions, and
confusions? When, if ever, has medicine been characterized by sufficient
uniformity—“hegemony,” the dubious might say—to justify speaking of the
Way of Medicine? We take this objection seriously, as uniformity rarely
exists with regard to any human activity. Consider a parallel problem with
designating something as “traditional.” Traditional marriage—for example,
a man and woman joined in a permanent and exclusive union—is found at
least as often in the breach as in the observance.

Nevertheless, just as the phrase “traditional marriage” identifies a core set
of beliefs and practices, adopted by many and constituting a “social
imaginary” that could be found deeply embedded within Western culture,¹⁴
so does the “Way of Medicine” designate a core set of beliefs and practices
adopted by many and constituting a social imaginary within which doctors
and patients have understood much of what has been expected of medicine
and its practitioners.

So while the Way of Medicine (like “Hippocratic Medicine”) has a
somewhat idealized quality to it, it identifies a discernible tradition with
characteristic practices along with ideas that make sense of those practices.
More important, this tradition gives rise to what thinkers such as Edmund
Pellegrino have called the “internal morality of medicine,”¹⁵ whereby the
norms that govern physicians as physicians emerge from the particular
needs to which the practice of medicine responds and the goods toward
which the practice aims. The Way of Medicine identifies the “traditional
practice” that, as McKenney writes, emphasized health as a “standard of
bodily excellence.”¹⁶

Moreover, we do not claim that the internal morality of medicine is self-
vindicating. As the example of torture reveals, practices can be
unreasonable in themselves—intrinsically contrary to human good and
human flourishing. Or, as we observe with respect to medicine, an
otherwise reasonable practice can grow corrupt, unreflective, or shallow. So
one must engage in critical reflection to discern whether, to what extent,
and in what dimensions a practice is in fact reasonable. Such reflection,
however, is simply a form of attending to the requirements of practical
reason, the natural law, or the Tao.

This task, albeit difficult, is incumbent on us all. We need not, however,
attempt the task on our own. Just as the practice of medicine has been
deeply shaped by healers such as Hippocrates, Jesus, Maimonides,
Avicenna, Hildegard von Bingen, Galen, Thomas Percival, and Dame
Cicely Saunders, so have a host of philosophers, theologians, legal scholars,
and clinicians given deep consideration to the requirements of practical
reason in the medical context. The list would begin with Plato, Aristotle,
Augustine, Aquinas, and several of the healers mentioned above, but it
would include, and not end with, twentieth-century thinkers such as
Edmund Pellegrino, Leon Kass, Alasdair MacIntyre, and John Finnis.¹⁷

The Way of Medicine does identify a tradition, not understood as an
unbroken continuity between the past and the present, but in the sense
articulated by MacIntyre, as a “historically extended, socially embodied
argument.”¹⁸ To our own development of that argument we now turn.

CHAPTER ONE

The Way of Medicine

To help us investigate the Way of Medicine and to clarify how it differs
from the provider of services model, we now introduce three patients whose
clinical cases we follow throughout the remainder of the book:

Cindy Parker is a twenty-year-old undergraduate student who presents to
the student health clinic.

Abe Anderson is a fifty-year-old carpenter who makes an appointment to
see a local primary care physician.

Nora Garcia is an eighty-year-old widow with multiple chronic diseases
who presents for her quarterly appointment with her geriatrician.

With these patients in mind, we return to our fundamental questions: What
is medicine, and what is it for? What can Cindy Parker, Abe Anderson, and
Nora Garcia reasonably expect of their physicians? What goods or ends
give purpose to the practice of medicine? What does it mean to call
medicine a “profession,” and how should its nature as a profession structure
the life of the one who enters it? Oddly enough, physicians rarely ask
themselves these questions, nor do medical educators ask them of their

students. But the answers to these questions are central to the Way of
Medicine.

By contrast, the provider of services model (PSM) either ignores these
questions or denies that they can be answered. The PSM denies that
medicine has an end or a purpose that can be known. In the absence of a
rational purpose for medicine, the “morality of strangers” stands in:
physicians must at least gain consent before intervening upon the body of
another. But the morality of strangers declines to take up the question that
the Way of Medicine poses as central: what actions are, and what actions
are not, essential to, acceptable for, or incompatible with the fundamental
purposes of medicine and hence with the profession of the physician?

Principlism, the most prominent ethical framework guiding the PSM,
explicitly circumvents the question of what medicine is for. Tom
Beauchamp and James Childress chose four principles—beneficence,
nonmaleficence, justice, and autonomy—that seemed relevant to the kinds
of practices in which medical practitioners typically engage, yet their
framework neither specifies nor depends on an account of what those
practices are supposed to do. Principlism encourages medical practitioners
to apply the principles, and one principle, beneficence, tells practitioners to
do what benefits their patients. But principlism does not specify what, in
fact, benefits patients and so leaves open what benefits medicine should
seek.

The PSM seems to lack something that should be at the root of medical
practice and ethics. We can hardly ask medical practitioners to make an
open-ended commitment to use the powers at their disposal to achieve
whatever their patients want, much less whatever the state or another third
party demands. In so doing we would ask medical practitioners to divest
themselves of their moral agency and responsibility. To practice good
medicine, one must first understand what kind of practice medicine is, what
it is for, and what difference that makes.

MEDICINE IS A PRACTICE

Medicine, we propose, is a practice. A practice, Alasdair MacIntyre writes,
is “any coherent and complex form of socially established cooperative
human activity through which goods internal to that form of activity are
realized in the course of trying to achieve those standards of excellence
which are appropriate to, and partially definitive of, that form of activity,
with the result that human powers to achieve excellence, and human
conceptions of the ends and goods involved, are systematically extended.”¹
A practice is found wherever human persons cooperate in the pursuit of a
good, grow in excellence at that pursuit over time, and extend their shared
wisdom of the good and excellence in pursuing that good across
generations. So described, medicine seems like a paradigmatic practice.

To identify which goods are realized internal to this practice, consider
MacIntyre’s distinction between internal and external goods. MacIntyre
gives the example of a child learning to play chess. He notes that we might
encourage a child to play chess by offering the child money, and more
money if the child wins. In this way, the child might learn to play chess
with some skill. But that would not mean that chess could be described
adequately as a skilled activity of a particular sort through which one
obtains money. Money is external to chess—it has nothing intrinsically to
do with it. Indeed, insofar as the child plays for money (or other goods
external to chess), the child, MacIntyre notes, will be motivated to cheat—
to contradict “those standards of excellence which are appropriate to, and
partially definitive of” chess. In contrast, insofar as the child comes to
appreciate and pursue the goods internal to chess, the child will both be
motivated to respect those standards and realize the goods found in playing
chess to an extent otherwise impossible.

The same is true for many human practices, including farming, music, and
medicine. Those who practice medicine can do so with a variety of goods in
view, but many of these goods—for example, money and social prestige—
have nothing intrinsically to do with the practice. One can readily imagine a
physician practicing medicine without pay and in a context in which she
gains no social prestige. Moreover, insofar as a physician practices
medicine for money or prestige, the physician is motivated to ignore

medicine’s “standards of excellence” if by doing so he gains more of these
external benefits. We see this whenever a physician recommends medical
interventions because those interventions increase the physician’s income.
In contrast, insofar as a physician comes to appreciate and pursue the goods
internal to medicine, the physician will respect the standards, rules, and
norms that make medicine possible, and he will also join other practitioners
in developing and extending the practice to realize its internal goods to an
ever greater depth. In this way, the practice of medicine has been
dramatically developed and extended over time.

The distinction between internal and external goods helps to explain why so
many physicians and nurses today are dissatisfied with their work.² A
physician who practices medicine merely as a job does so for its external,
extrinsic benefits. If he can obtain such benefits in a different, less
burdensome way, he will. In contrast, the physician who practices medicine
as a calling works for the benefits or goods that are realized in the work
itself—its internal or intrinsic rewards. We suggest that physicians today are
burning out and becoming alienated from their work in substantial part
because they do not experience their activity as sufficiently aligned with
and successful in bringing about the goods internal to medicine.

Several features of medicine follow from the fact that it involves active
pursuit of genuine human goods in a cooperative manner through time. For
example, medicine requires extensive effort and sustained focus from its
practitioners. As a parallel, consider the good realized in professional
soccer (football, for our non-American readers). To have any prospect of
playing professional soccer, players must train and discipline themselves for
many years. Similarly, to have any prospect of becoming an excellent
physician, medical trainees must study, train, and discipline themselves for
many years. Professional soccer players and physicians both pursue the
goods instantiated in their practices with such all-in commitment that they
must inevitably forgo other opportunities for human goods. This is not
because they believe soccer or medicine is the only activity worth pursuing
but because pursuing soccer or medicine is central to their particular
vocations.

In soccer and medicine alike, sustained effort and commitment make
possible constellations and expressions of the goods that would otherwise
remain out of reach—those available to a master but not to a dilettante (and
those available to a tradition, but not to a here-todaybut-gone-tomorrow
pastime). Most of us can enjoy the delights of recreational soccer with a
few cooperating friends, a patch of lawn, a ball, and a small window of
time. Little commitment is required. But the beautiful game of professional
soccer is achieved only because numerous people make extensive
commitments in cooperation with one another. Similarly, most of us can
bandage a minor wound or nurse a cold, but the commitments of those who
cooperate to bring about the practice of medicine make possible entirely
different levels of healing. No one who is sick wants a physician who plays
at medicine in the way that a physician might play at soccer with his
children.

Medicine requires commitments to particular goods, and also to particular
persons. Medicine requires, first, commitments to that community of
persons whose cooperation makes this social practice possible. The
comparison with professional soccer may help again: players, coaches,
trainers, owners, managers, referees, and fans all cooperate to bring about
professional soccer. They form a community constituted around a shared
good and a shared will or commitment toward that good. The members of
this community cooperate to mobilize diverse resources and to create
structures and institutions that facilitate their further cooperation—FIFA
(Fédération Internationale de Football Association), the World Cup, and so
on—so that the particular instances of goods brought about by professional
soccer might be realized.

Similarly, medicine requires a great deal of cooperation among physicians,
nurses, pharmacists, other healthcare practitioners, administrators,
educators, and of course, patients. Together they form a community
constituted around the goods that medicine seeks and a shared commitment
to pursue those goods together. The members of the community of medicine
cooperate to mobilize resources and to create structures and institutions that
facilitate their further cooperation—through hospitals, clinics, operating
rooms, professional schools, and so forth—so that the particular goods

brought about by medicine might be realized. Even a minor surgery, to
succeed, requires major commitments and cooperation.

Of course, anyone familiar with the institutions of soccer such as FIFA also
knows that those institutions can become corrupt, focused on the external
rather than the internal goods of the game. When that happens, the
institutions become not aids but threats to the practice.

Similarly, the institutions of medicine, from medical schools and hospitals
to insurance companies and regulatory bodies, can become obstacles to the
practice of medicine and its internal goods. Many of the pressures pushing
clinicians to embrace the PSM come from these institutions, which threaten
to withhold external goods and even to inflict institutional sanctions against
those practitioners who, for example, refuse to cooperate in interventions
that they believe contradict the purposes of medicine. We investigate the
Way of Medicine not least because doing so is an essential first step toward
revitalizing medicine’s institutional world.

Within the community of persons whose cooperation makes medicine
possible, patients occupy the place of honor, and the most fundamental
commitment of practitioners as practitioners is to their particular patients.
Although the term “profession” is now used widely to refer to any
specialized practice requiring study and training, classically the term
referred to medicine, the law, and the clergy. Each of these practices
responds to a profound human vulnerability, and each entails a singular
commitment to and solidarity with those who experience that vulnerability.
In the case of the clergy, the vulnerability is that of being estranged or
separated from God and the community of the faithful. In the case of the
law, the vulnerability is that of being exposed to threats posed by
adversaries and the power of the state. And in the case of medicine, the
vulnerability is that of being at risk for disease, injury, and death.

In the grip of such vulnerabilities, people need trustworthy advocates to
whom they can turn for help. These advocates must be trustworthy, first,
because the stakes are high. If a soccer player makes a mistake, his team
may lose the game. But if an attorney makes a mistake, his client may
spend years behind bars. And if a doctor makes a mistake, her patient may
die. Because the stakes are high, those who aspire to the clergy, the law, or

medicine typically must undergo long periods of training and
apprenticeship before they are authorized as practitioners of their
profession.

These advocates must be trustworthy, too, because in order to receive their
help, the one in need must entrust himself to the advocate’s care, and doing
so makes the one in need profoundly vulnerable to the professional herself.
The supplicant must entrust herself to the priest by confessing truthfully and
submitting to the priest’s ministrations. She makes herself vulnerable to the
possibility that the priest will divulge what she confesses or use her
information for personal gain. The accused must entrust himself to the
attorney by permitting her to represent him before the power of the state.
He makes himself vulnerable to the possibility that the attorney will collude
with the prosecutor to settle the case in a way that minimizes the attorney’s
work while miscarrying justice. The patient must entrust himself to the
physician by submitting to interventions with substantial side effects and
risks. He makes himself vulnerable to the possibility that the physician will
recommend the intervention that fattens the physician’s wallet rather than
the one most likely to bring healing to the patient. In all of these cases, the
one in need stands in an acute relationship of vulnerability with respect to
the professional.

Because of this vulnerability, those who practice one of these three
professions must internalize and reliably display the moral commitments
that govern that profession. These commitments become, in MacIntyre’s
terms, rules and standards of excellence without which the practice cannot
long continue. The word “profession” initially referred to taking religious
vows or otherwise publicly declaring particular beliefs or commitments. At
the heart of the professions of the clergy, the law, and medicine is a
commitment to the good of the vulnerable. In medicine, this entails a
particular kind of solidarity with one’s patients—a commitment to them that
prescinds from all judgments about a patient’s merit and engenders
distinctive and substantial obligations toward the patient.

To the question of what kind of activity medicine is, we can now say that it
is a paradigmatic practice—and to the question of what kind of practice it
is, we can say that medicine is a paradigmatic profession. Medicine arises

not from a need to bring about the greatest good for the greatest number nor
in order to satisfy an array of desires, but rather in response to the threats
that disease, injury, and death pose to the flourishing of every human being.
Medicine’s practitioners devote sustained effort and commitment to
preserve and restore those goods that are threatened. They do so in
cooperation with and commitment to a community of others who also are
concerned to preserve and restore these goods and in solidarity with those
individuals who need the goods that medicine exists to seek, preserve, and
restore.

This gives us a starting place on the Way of Medicine, but we need more.
To know what Cindy Parker, Abe Anderson, and Nora Garcia can
reasonably expect from their physicians, we still need to know which goods
medicine is for.

MEDICINE IS FOR HEALTH

Accordingly, we now make a modest proposal: medicine is for health. That
health is a human good we consider evident; health gives all human beings
a reason for action because it offers all human beings something that
contributes to their flourishing. So health is an end for everyone in their
day-to-day life, a point to which we return in chapter 2.

We acknowledge disagreements regarding both what health is and whether
health is the end of medicine, and we will address these disagreements
below. Nevertheless, we take the claim that medicine is for health to be
modest because it is so strongly supported by the evidence of authority, is
so implicitly affirmed by the practices and commitments of physicians and
patients across moral communities, and so aptly addresses the vulnerability
that patients experience, thereby undergirding the solidarity and trust that
make medicine possible. Let us address each of these points in turn; in so
doing, we identify and describe the Way of Medicine.

First, that health is the end of medicine is a proposal supported by the
evidence of authority—the considered opinions of wise practitioners of the
art for thousands of years. Though not himself a physician, Aristotle
thought it axiomatic that medicine is for health. He wrote, “Now, as there
are many actions, arts, and sciences, their ends also are many; the end of the
medical art is health, that of shipbuilding a vessel, that of strategy victory,
that of economics wealth.”³ Aristotle took these claims as starting points for
practical reason, as things known immediately by both “the many and the
wise.” Similarly, the Hippocratic Oath includes a promise to enter homes
only “on behalf of the sick,” implying that medicine’s fundamental aim is to
restore the health that is imperiled in the sick. Countless practitioners of
medicine, before and after, have made the patients’ health their goal.

Second, the proposal is implicitly affirmed by the practices and
commitments of physicians and patients across diverse moral communities,
including those who might deny that medicine has any intrinsic purpose.
Indeed, implicit agreement that medicine is (at least) for health seems to be
a necessary condition for the practice’s existence. One could not mobilize
the massive social cooperation necessary to sustain a coherent medical
profession in the absence of some shared end. Today, medical technologies
can be applied toward many different goals—something we consider in
more detail throughout the book. For the moment, we note that with respect
to many of these goals (e.g., family planning or a timely death), different
religious and other moral traditions have long disagreed. If medicine were
understood as a practice of pursuing such goals, there would be no shared
medical profession any more than there is a shared clergy profession.
Different moral communities simply would not cooperate to bring such a
profession about.

Virtually everyone agrees, however, that it is good to care for the sick so as
to preserve and restore their health. That commitment is central to Judaism,
Christianity, Islam, and other world religions, and it is championed equally
by those who do not consider themselves religious at all. That commitment
resonates with and makes sense of students’ longing to be physicians and of
physicians’ longing to become more fully the physicians they are not yet.
Indeed, though physicians, patients, and bioethicists disagree about many

things, we have yet to meet colleagues who challenge the notion that one of
physicians’ central concerns is their patients’ health.

Third, the proposal responds aptly to the particular vulnerability that
patients face and evokes the specific form of solidarity and commitment
that makes medicine the profession it is. Put another way, medicine as
oriented toward patients’ health addresses a real and significant need of
human persons. Edmund Pellegrino and David Thomasma, among others,
have argued that the particular form of vulnerability that sickness brings
gives us clear direction regarding the internal morality of medicine,⁴ or
what we are calling the Way of Medicine. If we pay attention to the
experiences of those who are sick, we find that they need a skilled helper
habituated by a resolute commitment to their good insofar as that good
involves health. The commitment to seek their patients’ health, and to do so
in solidarity with the patient as a person, allows those who are sick to
entrust themselves to their physicians. Without such trust, physicians cannot
do their work. The ethic of medicine—the Way of Medicine—is grounded
in these truths.

“WHY ONLY HEALTH?”

Health may be good, and there may be good reasons to make health a
primary focus of medicine, but why only health? Why not also direct
medicine toward any number of other goals, to bring about other states that
otherwise reasonable people also desire? It may seem nothing more than
incantation to say that medicine by its nature aims at health. Surely
medicine, a social construct, has no nature in any deep sense.

We concede a limited point: there is nothing magical about medicine as a
social practice that gives it a lock on the good of health and only that good.
The particular way in which goods are realized in a practice depends on the
structure and history of that practice. Had medicine been organized and
pursued in a different fashion, had its history and traditions been different, it
might have become a different practice with a different internal good.

However, a certain practice did develop whose primary, and even singular,
internal good was health. The question now is this: is there a reason to
maintain that traditional practice, the practice identified by the Way of
Medicine?

We think the answer is Yes but make a further concession: our argument is,
in certain respects, a prudential one. We could imagine, in theory, a
profession in which physicians aimed at all kinds of goods while also
maintaining excellence in preserving and restoring health, and did so while
respecting the further requirements of practical reason. We have not,
however, seen such a profession realized in fact. Indeed, bringing one about
seems prohibitively difficult.

The first problem is one we have already described: without a clear focus
on a common recognized good, it is not possible to engender the social
commitments and cooperation necessary for an appropriately capacious
practice of medicine. Suppose that doctors were thought to be merely
powerful wielders of technology, serving the desires of the highest bidder or
the demands of the most powerful institution. What reason could we have
for trusting such doctors? Indeed, would it not be more reasonable for those
who are sick to hold back from entrusting themselves to such “physicians”?
Without trust spread broadly across a variety of moral communities, a
public profession of medicine will steadily disintegrate into rival camps that
use the powers at their disposal to pursue different and ultimately
irreconcilable goals.

That is not to say that the Way of Medicine is monolithic; it allows for
diverse practices as long as those practices share the pursuit of health. The
good of health allows for complexities and ambiguities, and different moral
communities will disagree about how and how much to pursue health
relative to other goods. They may even disagree on the margins about what
health is. A focus on their patients’ health, however, allows clinicians and
patients even from diverse moral communities to trust one another in
pursuing this limited but crucially important shared goal.

Another problem is that of focus and differentiation. Consider again a
professional soccer player. If he begins to use his remarkable foot dexterity
to kick field goals in US football, and then to dance rumba, and then to

compete in mixed martial arts, at some point he becomes not a professional
soccer player but a highly skilled user of his feet. As the scope of his
footwork expands, the excellence of his soccer playing will likely diminish,
and some uses of foot dexterity may come to contradict his commitment to
soccer. (For example, kicking another player would conflict with the
internal norms of soccer, and kickboxing might result in injuries that cripple
his soccer play.) As a result, professional soccer players generally focus on
soccer, not on making things happen with their feet. Similarly, insofar as
physicians use the technological powers at their disposal to pursue a wide
array of outcomes, they necessarily become less expert and skilled at
pursuing their patients’ health.

Moreover, as we further consider throughout the book, some uses of
medical technology not only distract practitioners from their pursuit of their
patients’ health but come to contradict that pursuit or otherwise violate the
requirements of practical reason. Some alleged healthcare services directly
destroy health or other basic human goods. Some satisfy wishes for that
which is not good. Some undermine the conditions necessary for patients to
entrust themselves to clinicians when they are sick. Some services are
simply unfair. By detaching from medicine’s orientation to health, the PSM
sets aside the internal resources practitioners need in order to resist
temptations to abuse their medical powers.

History is punctuated with episodes in which medical powers were abused.
Tellingly, in each case the commitment to the patient’s health was either set
aside or directly transgressed. Many readers are familiar with the Tuskegee
experiments, in which physicians tracked African American men suffering
from syphilis for years without treating them. In that case, doctors set aside
concern for the health of their patients in order to use the patients to pursue
scientific knowledge. We could similarly consider the medicine of National
Socialist Germany, which was in its time the most scientifically
accomplished medical system in the world. There, by trading the health of
the patient for the “health” of the “Volk” (the nation), German medicine
became the instrument of mass torture and murder.⁵ Or again, we could
look at the eugenics movement in the United States, in which physicians
forcibly sterilized thousands of women to realize a dubious vision of
“population health.”⁶ Wherever medicine as a social institution has gone

badly wrong, it has ignored or abandoned its commitment to the patient’s
health in order to harness medicine’s powers to achieve other social goals.
Keeping the health of the patient as the end of medicine shores up a wall of
defense against such abuses.

WHAT IS HEALTH?

Even if you agree that medicine has a purpose and that the purpose is
health, it remains necessary to define “health” further, which poses
difficulties. Health is a reality of such breadth and depth that it cannot be
known with the same precision as mathematical algorithms. Any definition
of health will necessarily be incomplete and will allow, at least on the
margins, for uncertainty and ambiguity. For some, perhaps particularly for
those conditioned to regard scientific knowledge as the highest form of
understanding, that health cannot be defined with precision will be deeply
unsatisfying. If health cannot be defined with clear margins, of what use is
the concept in specifying the purposes of medicine?

We can still know much about health, because it and its absence are
intrinsic to human experience, as they are also to the lives of nonhuman
animals. Indeed, the fact that diverse and plural cultures all give rise to
healing professions testifies to the way health and the absence of health
make themselves known as facts of human experience and are accessible to
the inquiry of reasonable people. However, in light of the kind of reality
health is, we do well to heed Aristotle’s admonition that we not demand of a
subject matter more certainty than it allows.⁷ In that spirit, we start with
what seems obvious regarding health, and we draw distinctions where
necessary for clarity.

In this task we are deeply indebted to the work of Leon Kass. In the
following paragraphs, we articulate and extend certain aspects of Kass’s
inquiry into the nature of health.⁸ Throughout the rest of the book, we
consider further what health is by examining health in particular clinical

contexts, and we show that the way one defines health dramatically shapes
the way one understands physicians’ responsibilities.

The Way of Medicine makes two claims about health and objectivity. First,
health is an objective bodily norm for all living organisms. “Norm” here
does not mean a moral norm; rather, living beings have characteristic bodily
activities and tendencies, and these activities and tendencies determine what
is appropriate—the norm—for them in regard to the well-working of their
organic bodies. Hence, there are objective facts about what health is for any
organism, and being right or wrong is possible with respect to questions
about an organism’s health. When organisms display the health-related
norm(s) for members of their kind, we can say that they are healthy.

Second, human health is an objective human good; health is grasped by
human agents as worth pursuing. Likewise, such agents grasp that not
valuing health would be unreasonable and that states of ill health are to be
avoided. Health as a bodily norm and health as good are related, of course:
health could not be objectively good if there were no facts about what
health is. But the two forms of objectivity differ: the health of nonhuman
organisms is, like human health, an objective bodily norm for those
organisms, yet it is not a human good.

The Way of Medicine takes human health to be objective in both senses:
knowable in fact and genuinely good. Denial of either claim leads directly
to the PSM, for if health either is not real or is not good, patients have no
intrinsic reason to choose health rather than other desired states; nor do
physicians have any intrinsic reason to make health central to their practice
and profession.

Our claim here should not be misunderstood by reference to a particular
dispute that characterizes the current philosophy of medicine. Philosophers
disagree about whether health is an objective or an evaluative concept;
philosophers advocating the former are attracted to naturalistic accounts of
health, often based on the notion of statistically normal function.⁹ Those
who advocate for the latter hold that what we value determines what we
consider to be healthy.¹⁰

Our view differs from both accounts. Against the former, we hold that
living beings are genuinely teleologically ordered. As we will discuss
below, organisms have characteristic activities that serve their biological
life form, and that life form establishes the objective norm for the
organisms’ healthy functioning, not mere statistical regularities. Against the
evaluative view of health, we distinguish between health’s being an
objective bodily norm and health’s being objectively desirable or valuable.
Whether an organism is healthy does not depend on whether health is
desired or valued. Hence, one can recognize a squirrel’s health, as we do
below, without incorporating any judgment that the squirrel’s health should
be pursued or protected.

What, then, does it mean to say that a living being is healthy? What is the
health that the medical profession serves? Here we make four points about
what health is, then clarify in certain respects what health is not.

First, the domain of health, in its primary meaning, is not that of parts but of
wholes. When people speak analogically of healthy marriages or healthy
communities, they are concerned with those realities as wholes, and the
same is true of health in its paradigmatic sense. Health is a matter of what is
true of an organism, the living biological whole that in fact precedes,
metaphysically and temporally, the healthy differentiation, growth, and
development of its parts.

The term “health” can obviously also be applied to parts of the organism, as
to a “healthy liver” or a “healthy heart.” But such descriptions are still
clearly dependent on our understanding of the health of the whole. A liver
or heart is recognized as healthy when it is in a state that serves the health
of the whole organism. Likewise, the health of the whole organism is more
than the sum of the health of its parts. An organism may have all its parts in
apparent working order and yet be in ill health. We see this in patients with
syndromes of medically unexplained symptoms.¹¹ Or an organism may have
a deficient or absent part and still be in good health, as we see in many
patients who have lost a kidney or spleen, even a limb or an eye. Finally, we
know from experience that physicians readily sacrifice a part for the health
of the whole, as they do when removing a crushed finger or an infected

gallbladder. All these truths testify to the primacy of the organism as a
whole in thinking about health.

Second, health is associated importantly with activity. Kass describes health
aptly as the “well-working” of the organism as a whole. This emphasis on
activity militates against the forms of reductionism that equate health with
static conditions and abstractions, such as lab values in the expected range,
clear radiographic studies, and unremarkable physical exams. In being
characterized by activity, health resembles courage or strength, which
would not exist unless manifest in action—and it is unlike beauty or stature.
Activity does not imply constant movement, of course; thinking, resting,
and sleeping are all activities that require and display health. For humans,
each is an essential aspect of the well-working of the whole.

Third, the health of an organism and its health activity must be judged, to a
certain extent, with sensitivity to the organism’s context and state of
development. The health of a thirty-year-old woman differs from the health
of a thirty-year-old man, and the health of both differs from the health of a
ten-year-old of either sex. A healthy ninety-year-old experiences extensive
diminishments of health relative to a typical twenty-year-old, yet we can
still distinguish between a healthy and an unhealthy ninety-year-old.
Similarly, what it means for a person who has a conspicuous disability to be
healthy differs from the perception of health of a person who does not.¹²

These differences, present within the population of a species, are more
pronounced between species. Hence, our fourth point is that health is
species-specific. The health of a dolphin differs markedly from that of a
squirrel. The health of both is manifest in the activities they perform as the
sorts of organisms they are. Being different kinds of organisms, with
different natures, their health is different, but in each case we can still speak
of the well-working of the organism as a whole. Thus, no one would
suspect a squirrel to be in ill health simply because it cannot swim at high
speeds under water. And no one would suspect that a dolphin is ill because
it cannot climb trees. The signs, expressions, and realizations of health vary
from species to species. Human health is more complex because the
characteristic activities of healthy human beings are more varied and
diverse than those of other organisms. This complexity makes it difficult in

some cases to make judgments about health and how to pursue it, as
subsequent chapters show.

Do all of these complexities indicate that health is merely a subjective
notion, merely a socially constructed concept? They do not. Something can
be relative in certain respects while still being objective. Health is objective
if there are matters of fact concerning whether some individual organism is
healthy, but to discern such matters of fact, one must recognize truths that
are relative to that organism’s species, stage of life, and particular
circumstances. Indeed, health can be subjective in certain respects while
still being objective: a clinician may be unable to find anything objectively
wrong, but we believe (with Kass) that if the individual sincerely believes
she is unhealthy, then to that extent she is. More investigation may be called
for in order to determine, if possible, what has gone wrong, but individuals
do have a certain epistemic authority in determining whether they are
unhealthy.

Health can easily be confused with proximate or related concepts. Health is
not the same, for example, as having the least possible risk of future injury,
illness, or death. Playing soccer professionally requires a high degree of
health but also risks injuries that could be avoided by refusing to play
soccer. It does not follow that standing on the sidelines displays greater
health than does playing in the game. Similarly, health makes pregnancy
possible, while pregnancy also poses risks to health. One who is sterile does
not display greater health, however, than one who is capable of pregnancy.

Nor is health the absence of suffering. It is true that physicians have always
prioritized relief of suffering. “To cure sometimes, to relieve often, to
comfort always,” the maxim goes. Poor health is, of course, suffered, and
many conditions that diminish health also induce pain and other symptoms
that elicit suffering. Yet we also could draw up a long list of conditions
people suffer that may affect their health but are not themselves signs of the
absence of health. Those who are poor suffer want of finances, and those
who lose loved ones suffer heartbreak, to give just two examples.
Distinguishing suffering from health has decisive implications for medical
ethics, as we note throughout the book. To foreshadow a bit, we observe
that some people today, insofar as their experience goes, suffer the

conditions of having male genitals, small breasts, or short height, or even
being alive. If physicians equate health with the absence of suffering, they
will try to relieve these and other conditions. This hubristic aspiration leads
physicians, in the words of McKenny, “to relieve the human condition.”¹³

The distinction between suffering and ill health raises an important
question: what about mental health?¹⁴ The challenge is to define “mental
health” so that it includes the well-working of an organism’s mental and
psychological capacities, but it does not expand to require the absence of
suffering we just described, nor happiness, nor the satisfaction of every
desire. On one end of a spectrum are conditions that seem clearly to
represent deficits in mental health: schizophrenia or catatonic depression, to
give two examples. On the other end of this spectrum we find sadness,
anxiety, grief, or rambunctiousness that are often described as mental and
behavioral illnesses but do not clearly display a deficiency of one’s health.
Often it is not possible to draw a bright line between conditions that display
ill health and those that do not. Making these distinctions requires both
good clinical judgment and the humility to recognize the limits of such
judgment. What medicine should pursue is the mental capacity that makes it
possible to experience happiness, sadness, and other emotions in the way
that humans experience them when they are well-working, and to make
choices and behave in ways that humans are capable of when they are well-
working. Medicine oriented to health will not seek to bring about a
particular emotional state or a particular set of choices and behaviors as
such. By analogy, medicine would seek to preserve or restore the capacity
that makes it possible to play a musical instrument, not to determine which
notes are played or to ensure that the music remains in a major key.

Finally, although we have noted that the state of health is also objectively
desirable, and hence an aspect of human flourishing, the state of being
healthy does not encompass all that goes into human flourishing. The World
Health Organization errs when it defines health as “a state of complete
physical, mental, and social well-being.”¹⁵ A related error is made by the
agrarian poet and social critic Wendell Berry, whose work emphasizes that
human beings flourish only in community. Berry defines health as
membership and argues that the smallest unit of health should be the
community; thus, “to speak of the health of an isolated individual is a

contradiction in terms.”¹⁶ Such accounts, though admirable as critiques of
reductionism and individualism, problematically raise health above other
human goods, making health not merely one human good but the state of
human flourishing that encapsulates all human goods. If the end of
medicine is health so understood—if medicine’s purpose is to bring about
the fullness of life, the Hebrew concept of “shalom,”¹⁷ the World Health
Organization’s vision of complete well-being, or even Berry’s vision of
membership—it seems that physicians have a wide-open mandate. All is
their responsibility, all their domain.

Health so understood is not useful for guiding medical practice. Imagine a
man who says that he is going to see his physician because he recognizes
that he has an unhealthy relationship with his neighbor or he wants to work
on getting his finances into better shape. When terms for health are
expanded to encompass all aspects of human well-being, the term may
inspire but it no longer proves useful, especially not for naming the thing
that medicine is for.

According to the Way of Medicine, health is the end or purpose of
medicine, the principal goal that medicine seeks, the principal good that is
realized internal to medicine’s practice. But “health” here is meant in a
limited, circumscribed, and embodied sense: what Kass describes as “the
well-working of the organism as a whole,” realized and manifested in the
characteristic activities of the living body in accordance with its species-
specific life-form.¹⁸ We believe this account captures the primary meaning
of health. Health so understood is also a good that can be pursued for its
own sake as one—but only one—constitutive aspect of human flourishing.
It is additionally, of course, a condition for the possibility of pursuing other
human goods. According to the Way of Medicine, human health understood
in these two dimensions—as an objective bodily norm and as an objective
human good—grounds medical practice and the medical profession: it is the
end that takes precedence over others in the practice of medicine, one that is
not to be abandoned or violated by those who profess a vocational
commitment to it.

Their health, therefore, is what Cindy, Abe, and Nora can reasonably expect
will form the center of their relationships with all healthcare professionals
through all stages of their lives.

CHAPTER TWO

The Requirements of Practical Reason

Having argued that medicine is for a patient’s health, we now consider how
medicine’s pursuit of the patient’s health depends on and is accountable to
ethics: the broader requirements of practical reason. The questions that
concern us throughout this book are practical. They concern action—not
action considered impersonally from a spectator’s point of view but action
considered personally from the standpoint of one who must decide what to
do. Practical reason considers questions about particular actions as well as
lives as a whole. Humans rightly ask not only “What should I do?” but also
“How should I live?” And “What kind of person should I be?”

Members of the medical profession clearly need to ask both kinds of
practical questions. With respect to particular actions, the questions include
the following:

•Should I inform this patient of the terminal condition she has, even though
it might seem to do no good and might even distress her and cause her
suffering?

•Is it permissible to counsel or provide contraceptives or abortion to those
who seek to avoid or end unwanted pregnancies?

•Must I respect this patient’s wishes that I not provide further nutrition or
hydration, that I provide sedation to the point of unconsciousness to
alleviate her anxiety, or . . . ?

The medical professional’s life is filled with such questions, and the
medical practitioner needs an adequate framework for thinking about how
best to answer them.

With respect to questions about lives as a whole, the questions include
these:

•What sort of doctor [or nurse or therapist] should I be?

•What are the fundamental commitments of my profession around which I
must orient my life?

•What sorts of virtues must I have, and how must I discipline my mind,
will, and emotions in order to become and remain a good practitioner of
medicine?

•How does being a health-care practitioner fit into my other life-shaping
commitments, including my commitments to family, to neighbor, and to
God? Are these parts of my life walled off from one another? If not, which
should take priority, and how should conflicts be negotiated when they
arise?

These questions involve how a person should live, and they cannot be
answered solely by thinking about the practice of medicine and its internal
good, for they concern the relationship of that practice and its good to the
other practices, goods, and values in a person’s life.

The practice of thinking critically about all of these questions and
subjecting the possible answers to reflection and scrutiny is that part of
philosophy that can be called ethics, or practical ethics. Aristotle kept the
practical nature of ethics squarely in focus when he composed his
Nicomachean Ethics.¹ Engaging in ethics, he wrote, is for the sake of taking
action. Some philosophers focus primarily on theoretical questions
regarding ethics—for example, questions about the meaning of moral
language—but in this book we approach ethics practically, as Aristotle did.

Our understanding of practical ethics is deeply shaped by the tradition of
natural law ethics. There are many distortions and abuses of natural law
reasoning, particularly those that have defended an unjust arrangement of
institutional and social power as “natural” or as expressing the “law of
nature.” These are not what we mean by a natural law ethics. Rather, a
natural law ethics is an attempt to discover the deepest practical principles
of human flourishing and to work out the implications of those principles in
norms for concrete action. These principles and norms are what we identify
as the requirements of practical reason—that which practical reason
prescribes when functioning properly. We will argue that this natural law
approach to ethics is superior to consequentialist, deontological, and
principlist approaches with respect to both moral decision-making in
general and medical decision-making in particular.

HUMAN ACTION AND HUMAN GOODS

Let us start with questions about action: Why do we ever act at all? Why
not simply be, resting in our own personal existence without strain or
effort? Surely part of the answer is that human beings in many important
respects exist as beings who are “not yet fully formed,” who can and must

shape themselves by choice and action in order to become more fully what
they are capable of being.

No one comes into existence already married, for example, and no one
comes into existence already a doctor. Even upon reaching these states, no
one is “all done” being either married or a doctor. Rather, being married or
being a doctor requires choices and actions that build up our existence as
married persons or doctors, fulfilling potentials that we had. But potentials
for what? To what does reason direct us? Practical reason’s most
fundamental principles direct us toward human flourishing.

What does “flourishing” mean? Sometimes people talk about “happiness”
or “joy” as synonyms for flourishing, but these words can mislead:
happiness can be taken as a state of simply feeling good, and joy can be
thought of as experienced only momentarily (even if frequently). In
contrast, by “flourishing” we mean a state of being truly well off as human
beings, and sometimes what feels good does not makes us truly well off.
Moreover, being well off as a human being is something that characterizes a
life over time, not just isolated moments. So neither “happiness” nor “joy”
captures fully the notion of flourishing, though happiness and joy
accompany flourishing in some measure.

Nor is flourishing a self-centered notion, as happiness sometimes is. Human
beings are well off and flourish only in community, in relationships with
one another, as Wendell Berry reminds us. This point is central in
considering the doctor-patient relationship and the importance of patients’
relationships to their families. In this way and others, the conception of
flourishing we advance differs significantly from what some thinkers have
called the self-expressive individualist model of happiness. At its worst, the
latter model urges, “If it feels good, do it,” reducing human action to
expressions of undisciplined self-interest.

In contrast, practical reason begins with human goods. Human action is
always oriented toward something perceived as beneficial or good, even
when that perception is mistaken. We act for the sake of bringing about
something that promises us or others like us some benefit, and this is where
we find the foundations of all practical thought: in basic goods that are
intrinsic aspects of human well-being or flourishing.

By using “basic” and “intrinsic,” we are distinguishing the goods at the
foundations of ethics from others that are only instrumental and derivative.
Consider the goods of money and medicine. These goods are good only
insofar as they promise to bring about something else that is desired. But
practical reason starts with those goods that are desirable in themselves for
their own sake, because they themselves make all human beings better off
and contribute to their flourishing. Basic goods include life and health,²
knowledge, aesthetic experience, friendship, integrity, religion, and
marriage.³ Each of these particular goods benefits people in unique and
irreducible ways. The way we flourish as human beings in attaining
knowledge differs from the way we flourish in attaining health. Human
flourishing is not reducible to one of these goods, and so, as we will see, a
life characterized by flourishing requires some ordering principle within it.

Even bad decisions and lives guided by evil are typically directed at real
and basic human goods. Consider again the Tuskegee scandal. This
decades-long experiment was a terrible failure of medical morality, yet it
was driven by interest in two goods we consider basic: knowledge and
health. This presents an essential concern of ethics: how do we get from
awareness of the basic goods of human action to making moral decisions in
pursuing those goods?

CONSEQUENTIALISM

One answer that many philosophers have defended is that we should
maximize goods when making moral decisions.⁴ In maximizing, one
accounts for all the beings who will be affected by an action, and, as Jeremy
Bentham asserted, one promotes the greatest good for the greatest number.
Bentham was the founder of the view called utilitarianism; utilitarians
thought that the good to be maximized was pleasure. Other utilitarian
thinkers take different views of what is to be maximized, but we refer to all
views of this sort as consequentialist, for they all take the goodness or

badness of consequences as the primary consideration in making moral
judgments.

We have argued elsewhere, at greater length, against consequentialism, and
so a few remarks will suffice here.⁵ First, consequentialism has at least
surface problems with the concepts of justice and rights. Justice and rights
seem to be “trumps” against attempts to maximize goodness when that
maximization would be unfair to some or would violate basic human rights
—for example, threatening persons with enslavement or torture. Second,
consequentialism presents significant problems in its demand that we
consider all of the consequences that follow from our actions. Our
knowledge of such consequences is limited, and that which would fail to
maximize consequences in the short term might bear unforeseen but
beneficial fruits over time.

The third and most important point to make about consequentialism, and
specifically about maximization, is that it cannot work even if consequences
could be foreseen reliably, because instances of the goods that are
fundamental aspects of human well-being and flourishing cannot
themselves be weighed against one another rationally. For example, what
do person A’s long-term health and person B’s longterm knowledge have in
common that would provide a metric by which we could say that there is
greater goodness in A’s health or B’s knowledge? Health and knowledge are
different goods, and these persons are different persons. The options at
stake in a decision to, for example, pursue an experiment at the cost of A’s
health or desist at the cost of B’s knowledge seem incommensurable—they
do not have a common measure of goodness between them that would make
maximization possible. Nor are the values of persons’ lives
commensurable: each person’s life is uniquely and immeasurably valuable.
We cannot say without qualification, therefore, that this one person should
be sacrificed in order to save those two, three, or twelve.

Indeed, even options that a single good generates do not seem genuinely
commensurable. Medical professionals and patients regularly face options
in which different health benefits are offered, usually accompanied by
differing health burdens. A proposed course of surgery plus radiation
treatment might offer a patient hope of a longer life, albeit with

considerable side effects such as nausea, pain, and reduced energy. A
proposed watchful waiting approach might offer hope of preserved energy,
appetite, and freedom from disabling pain, albeit with considerable risk of
dying sooner. Does one of these options offer all the good of the other plus
more? If it did, there would be no need for choice; we would be irrational
not to take the greater good. But choice is required. The benefits and
burdens of each option differ, and they allow for no common scale of
goodness or value through which to resolve one’s deliberation.

THE FIRST MORAL PRINCIPLE

What, then, should characterize our relationship to those goods that are
basic aspects of all human beings’ flourishing? How can we make upright
choices when faced with options that involve incommensurable goods and
persons? The basic norm would seem to be as follows: in acting and
willing, always be fully open to the goodness of the goods and to the
persons for whom those goods are good. This seems to be a demand of
reason, and hence a requirement of practical reason. Practical reason orients
us to the goods as we consider what to do, and reason recognizes those
goods as giving a point to what we do. Reason, then, requires that we not
close ourselves off to goods and persons.

First, let’s consider how emotion or prejudice might lead us to be less than
fully open to human goods or persons. Consider a situation in which we
very much want to experience the benefits of a particular good. This good
especially appeals to us or plays an important role in our own or our loved
ones’ lives. All humans respond more immediately, on some occasions, to
some goods rather than others. For example, a particular opportunity to
obtain knowledge (say, by reading a book) may seem tedious by
comparison with a desirable opportunity for play. On some occasions,
options are not merely tedious but painful—going through surgery, working
through a difficult rehabilitation, or telling a patient an unpleasant truth. On
still other occasions, the good at stake seems of overwhelming importance

because it is under threat: our life, for instance—or our career, our family,
our religion, and so on.

These responses are understandable, but under the influence of emotion, we
sometimes make choices that are not fully open to all goods but instead
privilege one or another in an unreasonable way. We might simply choose
directly against one good for the sake of another: we deliberately inflict
harm on one person for the sake of benefiting someone else, or we
deliberately damage one instance of a basic good for the sake of another.
Such actions make sense only if goods and good options are weighable.
Harming or destroying a good for the sake of some other good makes sense
only if that other good is a greater good. Yet the notion of “greater good” is
out of place in speaking of basic goods.

Thus, a norm emerges from consideration of the rational requirement of
openness to all goods: one should never directly damage or destroy one
instance of a basic good for the sake of some other or “greater” good. Of
course, one should not damage or destroy an instance of a basic good out of
hostility, either, whether hostility toward that good or toward the person
experiencing the good. So this norm can be broadened: one should never,
for any reason, directly damage or destroy an instance of a basic human
good. This norm is echoed in the Way of Medicine’s millennia-old
commitment to do no (intentional) harm. We might say that practitioners of
the Way have seen in the domain of medicine and the basic good of human
health a genuine requirement of practical reason, and they have sought to
respect that requirement in the norms of their practice.

Another requirement of reason has a justification similar to the previous
one. Suppose we are attached not just to some good but to some person.
Such attachment is often quite reasonable: we have attachments to our
children, spouse, and parents, as well as to our neighborhood, workplace,
and church. These attachments play a legitimate role in our moral
deliberations. Sometimes, however, our emotions lead us to privilege some
persons over others in ways that are unreasonable. For example, we allow
our daughter to take a greater share of something than the other children,
because she is ours; maybe we cheat in our effort to get into medical school,

thus privileging ourselves over others who are more qualified. How can we
test for this kind of arbitrary privileging in our personal attachments?

One traditional test is the Golden Rule: do unto others as you would have
them do unto you. When our privileging diminishes others in such a way
that we would resent such privileging were we on the receiving end, we
have reason to think that we are acting unreasonably, arbitrarily, and
unfairly. Similarly, when we treat others less well than we would expect our
loved ones to be treated, we are again acting unfairly. A norm of fairness,
clearly violated in the Tuskegee experiments, emerges from the requirement
to be open to the goods in all persons.

Of course, sometimes our commitments require that we give some people
special treatment: physicians’ commitments to their patients, for example,
create a special space in their lives for those patients and their needs. But
this seems clearly fair: everyone has reason to accept the possibility of such
special commitments, for without them, there could be no medical
profession, no doctor-patient relationships, none of the benefits that come
from a doctor’s special knowledge and even her friendship with her
patients.

At the same time, the Golden Rule—the norm of fairness—does chasten
even such commitments to patients. Physicians will find some patients more
pleasant or attractive than others, as does any teacher with respect to her
students. When those feelings are allowed to unduly shape medical practice
or teaching, a key requirement of practical reason has been violated. To
choose one visible example, consider the case of Jahi McMath, an African
American teenager in Oakland who was diagnosed as brain dead following
a terrible complication of a minor surgery. As described in the New Yorker,
biases of race and class appear to have affected how medical professionals
and professional ethicists treated Jahi and her family.⁶ Insofar as that is true,
such treatment was unfair and did not adequately meet the requirements of
practical reason.

PRINCIPLISM AND KANTIAN ETHICS

Medical ethics as a field emerged in the twentieth century partially in
response to abuses and scandals in the medical profession and partially
because the profession seemed insufficiently self-critical with respect to its
ethical commitments. The emergence of new medical technologies added
fuel to the fire by generating dilemmas that seemed to call for new forms of
deliberation. “The Belmont Report,” issued by the National Commission for
the Protection of Human Subjects of Biomedical and Behavioral Research,
identified three principles to govern moral action in biomedical research:
respect for persons, beneficence, and justice.⁷ Within a few years, Thomas
Beauchamp, a philosopher and original member of the commission, and
James Childress, a theologian, had revised and expanded these to four
principles to govern the practice of medicine: autonomy, beneficence,
nonmaleficence, and justice.⁸

Beauchamp argued that what has come to be called principlism marked an
important advance in bioethics. Doctors, he explained, had been attending
only to beneficence and nonmaleficence—to doing good and avoiding evil
—and so had come to overlook abuses of patient autonomy, as when
patients were treated without their consent, and abuses of justice, as when
vulnerable populations such as disabled children or poor black
sharecroppers were exploited as research subjects. Principlism not only
responded to insufficient self-reflection, expanding medical technologies,
and abuses of medical ethics; it also seemed to overcome an intractable
dispute between two competing schools of ethical thought:
consequentialism (discussed above) and Kantian deontology (discussed
below). Consequentialists and Kantians espouse different and irreconcilable
first principles, but Beauchamp and Childress discovered that even persons
with radically different moral foundations could agree on so-called mid-
level principles. Principlism appeared to advance bioethics by providing a
common approach, even if it eschewed moral foundations.

Interestingly, a number of competing approaches arising in response to
principlism also avoided first principles. Bernard Gert and K. Danner
Clouser put forward a rule-based approach similar in many respects to
principlism, and Albert Jonsen and Stephen Toulmin advocated an approach

based on casuistry that looked at paradigm cases and worked by analogy
from there to uncertain cases. Theorists including Edmund Pellegrino and
David Thomasma defended approaches centered on the virtues that medical
professionals should have.⁹

These approaches have varying strengths and weaknesses, but all (with the
possible exception of Pellegrino and Thomasma’s) share an opposition to
foundationalism, to beginning from first principles from which norms (or
rules, principles, or even virtues) are derived. Instead, these approaches
typically work with the concept of reflective equilibrium, which involves
moving back and forth between general and abstract norms and concepts,
on the one hand, and the features of particular cases, on the other. Many
people, especially those engaging in actual clinical practice and not
operating “by theory,” have found these reflective equilibrium-based
approaches refreshingly practical. Notwithstanding their flexibility and
practicality, in our view these approaches fail insofar as they lack moral
absolutes.

Note that we are not claiming that one right answer always exists for
everyone and everybody. In very many circumstances, various options are
all morally permissible. In many other circumstances, one cannot determine
what should be done without taking into account the personal character,
choices, commitments, and features of the agents in the situation. No
impersonal algorithm can churn out the right answer for everyone in a
similar situation. Accordingly, one needs the virtue of prudence, along with
a willingness and ability to reflect on one’s particular situation, in order to
arrive at reasonable decisions.

So in speaking of moral absolutes, we do not claim that some onesize-fits-
all model should settle all moral questions, but we do claim that some
actions never should be performed, regardless of the circumstances.
Historically, the medical profession has acknowledged such moral
absolutes. The Hippocratic tradition, for example, held that physicians
should never kill, and this norm that arose in a pagan society has been
affirmed in Jewish, Christian, and Muslim cultures. It is hard to see how
ethical approaches that have no foundations can support this or other
absolute norms. Rather, nonfoundationalist approaches, particularly

principlism, commit to balancing or weighing competing principles in
different circumstances based on the features of each individual case. But if
all principles (or rules, cases, or virtues) may be weighed against one
another, and if all are subject to possible revision in light of a particular
circumstance, none are absolute. Nothing, that is, can be ruled out
altogether before considering the circumstances.¹⁰ Thus the seemingly
absolute demands of human rights—against acts such as rape, torture, and
killing the innocent—cannot be absolute after all within a framework like
principlism. In contrast, our approach leaves room for these and other moral
absolutes.

A related difficulty with principlism and many of its descendants is that
they give no account of what is good.¹¹ Consider autonomy, the first of the
four principles. Respect for autonomy is essential in medicine, but why?
What good or goods does respect for autonomy serve? Similar questions
arise with respect to beneficence and nonmaleficence. If we are to do good
and avoid doing evil, we must know what is good. Even justice requires an
account of what is good, insofar as justice often involves rightly distributing
goods and is premised on concern for the good of others.

In this light, we need to unearth the foundations of ethics and seek an
account of what is truly good. In our proposal regarding the basic goods, we
attempt to provide the deeper content necessary to make sense of
Beauchamp’s and Childress’s midlevel principles, the casuistry of Jonsen
and Toulmin, and so on. Moreover, these basic goods allow us to identify
moral absolutes, actions that should never be taken precisely because they
involve acting contrary to a basic good. Such actions violate the principles
of beneficence and nonmaleficence by contradicting genuine goods and
thereby human flourishing. They violate justice because they disregard the
good of another.

Similar points can be made about Kantian ethics. In his attempt to drill
down to the foundations of morality, Immanuel Kant held that a
“categorical imperative” was an absolute prescription of reason and that the
categorical imperative could be formulated as follows: “Act in such a way
that you treat humanity, whether in your own person or in the person of
another, always at the same time as an end and never simply as a means.”¹²

Put another way, Kant saw the foundation of ethics as resting on a principle
of respect for persons. Human beings are never to be treated as mere things
—disposable or usable for others’ purposes—but rather must be treated as
beings of noncontingent, immeasurable worth. Kant’s approach has obvious
merits when we consider experiments performed on the unconsenting and
unsuspecting not for their own benefit but to serve others’ interests. But
Kant also left out of consideration, quite deliberately, concern for human
good. In Kant we find a prototype of what later came to be described as
prioritizing the right over the good, a feature of Kantianism that prevents
one from determining the content of what respect for persons requires.

This content-thin feature of Kantianism is especially conspicuous in the
work of thinkers who reduce respect for persons to respect for persons’
autonomy. What does respect for another as a person mean? It means, on
one account, respecting another’s capacity to respond to human reasons. In
that construal, we violate the categorical imperative when we act toward
another without giving reasons and obtaining acquiescence in those reasons
—in other words, when we act without the other’s informed consent.

But this account of respect also seems thin, reduced to respecting what the
other happens to want. Without an account of what is genuinely good for
human beings, we have no objective standard against which to judge
whether a reason is good—whether, for example, what a patient wants
aligns with or contradicts her genuine welfare or flourishing. We are not
here advocating overriding a patient’s refusal; there are good reasons to
respect and insist on patient consent. Nevertheless, if the doctor is to give
good reasons, and if the patient is to consider and make an autonomous
decision on the basis of those reasons, both parties must have access to
some standard for good reason. That standard, we argue, is found in the
basic goods and in openness to all such goods in all persons.

The inheritors of the right-is-prior-to-the-good maxim have played another
important role in the emergence of the provider of services model (PSM),
specifically in its development as a matter of politics. Followers of the
political philosopher John Rawls have used that maxim, as well as Kantian
thought about reasons and respect for persons more broadly, to argue that
only “public” reasons are legitimate for public deliberations and debate.¹³

That view has radical consequences for the role of religion in bioethics,
especially in bioethics as it plays itself out in political debate, deliberation,
legislation, and adjudication. The Rawlsian emphasis on public reason
threatens to push religious considerations out of the public sphere—with
respect not only to politics but also to the public practice of medicine.
Medical professionals, in a Rawlsian model, must resist the influence of
religious reasons on their professional deliberations and clinical practices.
We assess and criticize this claim in our final chapter, when we take up
conscience and medical ethics. But in this chapter the topic of religion
raises a somewhat different though ultimately related issue. Religion clearly
plays an ordering role in some agents’ lives, a role that could be described
as vocational; medicine also seems to play such a role.

VOCATION

At the foundation of ethics we find basic human goods that are never to be
violated. But any ethic concerned with human flourishing needs more than
prohibitions; it also needs an ethic of pursuing human goods.

According to practical reason, how should this pursuit of human goods be
organized? Why organize at all? Why not simply pursue human goods
serially, acting for the sake of this good now, of that good then, in
accordance with whatever seems appropriate and desirable in each
situation? This question almost answers itself. A life characterized by
pursuing goods in such a serial manner, without organization or structure,
will inevitably be shallow and chaotic in ways detrimental to human
flourishing.

Consider, for example, the following sorts of difficulties. First, such a life
could not achieve excellence at anything. Many instances of basic goods
can be realized only through sustained effort and commitment. Although
one can learn new things from social media and play at the guitar in one’s
spare time, one cannot realize the good of knowledge available to a first-
rate scholar without years of study or the goods of play and aesthetic

experience available to a professional guitarist without years of practice.
Similarly, a physician cannot bring about her patients’ health without first
committing to decades of study, practice, and work. Sustained commitments
are necessary to realize basic goods in any depth.

Second, achieving basic goods often requires making commitments to other
persons. In many cases, pursuit of a good is best organized socially. One
cannot become a doctor or a philosopher, for example, without cooperating
with other persons. Moreover, some goods are social by nature: no one
flourishes, for example, without the good of friendship, yet friendship
involves committed relationships with other persons. Achieving basic goods
requires a settled will to work with and for others.

Third, once one starts to make commitments—to a profession, a spouse, a
church, and so on—one quickly encounters apparent conflicts between
these commitments. Therefore, one must put one’s commitments in order to
be genuinely oriented to human flourishing. We need something like a
rational life plan for our actions and lives.

Even so, the idea of a rational life plan fails to capture adequately what we
are addressing. First, the language “rational life plan” seems to suggest that
we have the power, through a firm will and expert planning, to author our
lives as we see fit, but this surely is an error. In some sense, humans are the
authors of their own lives through their choices, commitments, and actions.
Yet people face in life much more than what we choose or will. Things
happen to us, and a good life depends on responding well to such
happenings and integrating what has happened into the order of our lives.
Rarely can we do so without revising our assumptions about that order.

The notion of a rational life plan is less than satisfying for a second reason:
it fails to capture the way in which many people believe themselves to have
been called to the particular shape of their lives in a manner beyond their
control. The concept of calling—a synonym of “vocation”—has roots in
traditional Christianity, in which God calls human persons to various and
distinct lives of good works, marking out their good deeds in advance for
them. In this understanding, one may be called to be a doctor, rather than
simply deciding to be one, and in accepting the call, one is constituting

oneself in the deepest way not simply as a doctor but also as a person
responsive to and responsible before God.

Interestingly, although the concept of calling has roots in Christianity, today
most US physicians, regardless of their religious affiliations, use the term to
describe their practice of medicine. Indeed, even among physicians who say
they have no religion, and among those who say they never attend religious
services, more than half agree with the statement “For me, the practice of
medicine is a calling.”¹⁴

This result should not surprise us in light of the kind of good that health is.
Like knowledge or friendship, health transcends any one person’s desires or
capacities. Health is good for all human beings, regardless of whether they
want it. Moreover, health is a good of such breadth and depth that one can
pursue it in countless different ways and explore its meaning and potential
for all time. What’s more, while it is incommensurable with all other goods,
health nevertheless serves as a necessary condition for the pursuit of all
other goods. And so, faced with such a good, even nonreligious persons
may find that this good calls out to them, inviting them to a lifetime of
service. In this sense, physicians might rightly describe their practice of
medicine as part of their calling or vocation.

Vocations shape the lives of individuals in at least two important ways.
First, vocational commitments generate new obligations. When spouses
marry, they commit to one another and to a form of life that generates new
obligations for each of them: toward one another as well as toward any
children who might result from their marriage. When a student freely makes
a vocational commitment to practice medicine rather than teaching
philosophy, that commitment requires an array of further commitments and
obligations (e.g., to complete premedical courses, take the MCAT, and
apply to medical school). A vocational commitment serves in some ways as
a promissory obligation, binding an agent voluntarily in a way that she
would not otherwise have been bound.

But vocational commitments also free agents from other obligations. A
person’s vocational commitments to his own children create obligations to
care for them that result in having lesser obligations to care for other

people’s children. A physician’s obligations to her profession and to the
persons to whom she has obligations within that profession (especially her
patients) similarly require her to dedicate her time and effort to meet the
needs of those persons, not just any person or every person. Here again,
vocational commitments are like promises that, by creating specific
obligations, free persons up from more general and unspecified demands
that might have been placed on them.

How does one discern one’s vocation? Obviously, many people are drawn
to the prospect of being a doctor. Equally obvious, however, is that among
these many are not “called” per se. How should a person think about
whether she is called to this profession or not?

In one way, the answer to this question depends on everything we say
through the rest of this book. If we correctly assess what being a doctor
means, what the practice of medicine is for, and what moral norms
healthcare professionals should abide by, a person should not commit to the
medical profession unless she can willingly and enthusiastically embrace
and internalize the Way of Medicine. More specifically, she shouldn’t
become a doctor unless she is willing to embrace the norm of never
intending to damage the health of any person. In our approach, one who
thinks of her mission as primarily to minimize suffering, even by killing if
necessary, does not understand the vocation of medicine and so cannot be
called to it in this case.

More generally, though, one can say that vocational commitments should be
guided by ability, interest, opportunity, and need. Ability is obvious. No one
can become a good surgeon without developing some requisite skills, and
some lack the capacity, realistically, to develop those skills. Moreover,
“skills” are not enough; they must be joined to dispositions that some
people will struggle to develop. A physician in training who dislikes people
is in the wrong line of work. The same is true of a pediatrician who finds
children tedious, an aspiring surgeon who recoils at the sight of blood, or
any medical student or physician motivated primarily by money. The
medical profession rightly plays gatekeeper with regard to these skills and
dispositions, rejecting many applications to medical school or residency
training. But the profession’s gatekeeping role cannot substitute entirely for

the scrutiny that an individual should give to her own deliberations about
whether she has the ability to fulfill the requirements of particular line of
work. If she does not, she has reason to believe that she is not called to that
line of work.

What about interest? Is it possible to devote one’s life to a practice or
profession in which one has little interest? Yes, clearly. Some have no
option but to do work in which they have little interest. But other things
being equal, one’s interests and passions serve as helpful guides as to what
one is called to do. Suppose an individual has gifts that make him capable
of becoming either a fine surgeon or a fine musician, and he is passionate
about music but indifferent to medicine. Then, it seems to us, despite some
obvious economic trade-offs, that a life in music might be more appropriate
for that individual. Passion, however, is not enough. In our culture we
frequently hear outrageously talented athletes or other performers say, “You
can do anything you put your mind to.” No, you cannot. That caveat
notwithstanding, human beings are not simply rational; we are also
emotional, and the basic good of integrity is enriched in our lives when
reason, choice, action, and emotion all harmonize with one another. So
attending to one’s emotions, passions, likes, and dislikes is an important
part of discerning one’s vocation.

Third comes opportunity. Recall that the order of our life is never entirely
of our own making. Rather, our lives are structured to a great extent by
what happens to us, most of which we cannot control. Similarly, the call to
be a doctor depends on many circumstances beyond one’s control. Many
people around the world would make terrific physicians but never have the
opportunity to even consider that possibility. Many others, despite ability
and interest, will never be offered a spot in a medical school. Such persons,
upon realizing that an opportunity to become a physician will not open up
for them, must acknowledge that they are not called to the work. They must
then think creatively and act energetically to discern a new course—one
that may or may not intersect with the world of medicine.

Finally there is need. As is perhaps obvious with respect to medicine, our
vocational commitments should respond to needs that we can meet. A life
of pursuing human goods is not a self-serving life but a life of self-giving.

Here again, we find helpful confirmation in the reflections of some
religious traditions. Consider, for example, this claim of the Second Vatican
Council: “It follows, then, that if human beings are the only creatures on
earth that God has wanted for their own sake, they can fully discover their
true selves only in sincere self-giving.”¹⁵ In discerning vocation, a person
must give special attention to the question of what needs he can address
through his ability, opportunity, and interest.

The domain of vocation illustrates a claim we made earlier in this chapter.
Although our natural law approach to understanding the requirements of
practical reason asserts moral absolutes, it does not assert a one-size-fits-all
picture of the moral life. Vocations are personal, requiring that an individual
discern both that to which she is called and also that which is therefore
required of her (and no longer required of her) in terms of her vocation.¹⁶
The need for such discernment highlights the importance of autonomy in
the moral life, including the moral lives of patients and physicians.

CONCLUSION

In chapter 1 we began to articulate the Way of Medicine’s understanding of
the practice of medicine. In this chapter we have supplemented that inquiry
with reflection on the broader requirements of practical reason, which arise
from recognizing basic human goods that give us reasons to act for the sake
of human flourishing. Recognizing the nature of those goods has led, in
turn, to the articulation of three requirements of practical reason: (1) basic
goods should never be intentionally damaged or destroyed, (2) we should
be fair in our distribution of benefits and burdens as regards other persons,
and (3) we should organize our lives around vocational commitments. How
does all of this bear on the clinical encounter and the doctor-patient
relationship? We now turn to that question.

CHAPTER THREE

The Doctor-Patient Relationship

Let’s return to the patients we introduced you to in chapter 1, presenting a
bit more information about their specific health concerns:

Cindy Parker goes to student health seeking a prescription for
contraceptives.

Abe Anderson asks his physician for antibiotics to treat a respiratory
infection.

Nora Garcia wonders if she should have a do-not-resuscitate order.

How should a clinician respond in each of these clinical encounters? What
norms guide good medical practice? What kind of relationship should
physicians cultivate with their patients, and for what virtues should they
strive? The above cases reflect routine encounters between patients and
their clinicians, and here in the everyday practice of medicine, we begin to
see how the Way of Medicine makes a difference for clinicians in
understanding their professional ethical obligations.

Clinicians’ approach to their obligations to patients has shifted over the past
half-century, contemporaneous with the rise and subsequent evolution of
the provider of services model (PSM). Modern bioethics emerged in part
because of physicians’ abusing their power, both by conducting unethical
research on patients and by paying insufficient regard to patients’ proper
authority to decide how medicine would be deployed on their behalf. In the
1960s and early 1970s, the patients’ rights movement contended that
traditional medicine gave physicians too much authority, making patients
unjustifiably vulnerable to their physicians’ whims.

From many quarters came critiques of what came to be called paternalism
(pater is Latin for father), a model of the doctor-patient relationship in
which the physician, like a parent, has the authority to tell the patient what
to do. The physician orders; the patient obeys. In strong paternalism, the
good physician would tell Cindy Parker whether to use birth control and
which birth control technology to use. He (prior to 1970, almost all
physicians were men) would also tell Abe Anderson what to do about his
upper respiratory infection and decide whether Nora Garcia would be
resuscitated. The physician would make all of these decisions and give the
relevant orders based on his superior knowledge of medical science and
health. Cindy, Abe, and Nora, as good patients, would obey the physician’s
orders.

This image of the doctor-patient relationship in bygone days is something
of a caricature, of course. Physicians would not stay in business long
without cultivating patients’ trust and accommodating their concerns. But
this image of strong paternalism helpfully marks one end of an ideological
spectrum regarding the doctor-patient relationship and the distribution of
authority and responsibility within it. It provides a view of what the modern
medical ethics movement reacted against: unchecked power, unexamined
professional authority, male privilege, and unjustified control over patients.

We do not defend strong paternalism. But we note that shortly after the
patients’ rights movement successfully established patient autonomy as the
driving principle of medical practice, prominent practitioners and critics
began to worry that in its retreat from paternalism, the pendulum had swung
too far,¹ toward a normative vision of the doctor-patient relationship in

which the good patient chooses and the good physician provides. We see
here the essence of the PSM.

The shift from strong physician paternalism to strong patient autonomy
depended on and contributed to the growing moral confusion regarding the
ends of medicine that Kass described in 1974.² That confusion also was
described in a seminal 1981 paper written by physician and ethicist Mark
Siegler: “Searching for Moral Certainty in Medicine: A Proposal for a New
Model of the Doctor-Patient Encounter.”³ As the title suggests, Dr. Siegler
was searching for a solid ethical foundation for clinical decisions that
doctors and patients would make, and he was doing so at a time in which all
such foundations appeared suspect. “What duties, obligations, and
responsibilities,” he asks, “does the physician incur, voluntarily and
autonomously, when he chooses to become a physician?”⁴

Siegler’s paper was cited extensively in a 1982 report by the President’s
Commission for the Study of Ethical Problems in Medicine and Biomedical
and Behavioral Research. The Commission wrote:

The role of the health care professional . . . appears to be in a “phase of
incomplete redefinition,” . . . “judgments of conscientious persons have
become divergent and perplexed” and societal consensus does not exist. No
longer are the proper ends and limits of health care commonly understood
and broadly accepted; a new concept of health care, characterized by
changing expectations and uncertain understanding between patient and
practitioner, is evolving. The need to find an appropriate balance of the
rights and responsibilities of patients and health care professionals in this
time of change has been called “the critical challenge facing medicine in the
coming decades.⁵

Almost four decades later, judgments of conscientious persons remain
divergent regarding a number of clinical practices, and societal consensus
regarding the ends of medicine remains elusive. As we noted with respect to

balancing principles, clinicians and ethicists have no way to balance
different moral claims without a shared standard regarding the purpose of
medicine. What one party (e.g., the patient) judges to be morally and
medically necessary, another party (e.g., the physician) may judge to be
illicit and unprofessional; benefits and harms depend on perspective.
Without a shared standard, then, beneficence defaults to providing what the
patient values, and nonmaleficence defaults to refraining from actions the
patient does not value. Justice defaults to requiring the clinician to
accommodate the patient’s right to choose. As a result, bioethics reduces to
a proceduralist approach in which being ethical means determining who has
the authority to make a choice and facilitating that choice insofar as
possible.

Moreover, the notion of balancing rights and responsibilities suggests that
clinicians and patients relate to one another as rivals expecting conflict. The
language of balance reflects a focus on defending the rights of one party
against those of another rather than on cultivating trust and cooperation
around a shared pursuit. In the absence of some objective standard to guide
medicine, our culture understandably situates authority with the more
vulnerable individual: the patient whose rights are threatened by the
physician’s power. The responsibility of the physician, then, is not to pursue
the patient’s health according to the physician’s best judgment. Rather, the
physician’s responsibility is to respect the patient’s right to make informed
choices regarding which healthcare services the patient will receive, as long
as the patient does not request something that breaks the law. By default
and prescription, autonomy becomes the overarching principle.

As we noted in the introduction to this book, few physicians consistently
follow the PSM. Few physicians would agree, for example, to prescribe
antibiotics just because a patient really wants them or to prescribe Adderall
for a patient who simply wants to study more effectively. In medical
practice, autonomy does not do the work that PSM theory suggests it
should. Many physicians implicitly adhere, at least partially, to the Way of
Medicine.

We return to our clinical cases to see the difference it makes to understand
medicine as the PSM does versus understanding medicine as the Way of

Medicine does—as a practice oriented toward the patient’s health as one
basic human good.

CINDY’S CHOICE

Cindy Parker is a twenty-year-old undergraduate student. She presents to
the student health clinic to see a family medicine physician. The physician
asks, “What brings you to see me today?” Cindy responds, “I just need a
prescription for birth control.”

How should the physician in this case respond? Under the PSM, the answer
is obvious: prescribe what the patient requests. Why? Because the
intervention is lawful and the patient has autonomously requested it.
Respect for Ms. Parker’s autonomy requires the physician to prescribe the
medication unless some unusual condition is present. Moreover, Ms. Parker,
like millions of other women, values contraceptives. So prescribing
contraceptives satisfies the principle of beneficence—it provides something
good for her from her perspective. In addition, contraceptives are relatively
safe; they increase the risks of some injuries to a woman’s health, such as
blood clots in patients who smoke, but such risks remain relatively small
and can be mitigated with proper education and triage. Nonmaleficence,
therefore, is satisfied. Finally, this is also a matter of justice. Women who
take contraceptives are thereby empowered to complete their educational
and vocational trajectories and to bear children at times that align with their
personal and family needs. It would be arbitrary and unjust for Ms. Parker’s
physician to refuse to prescribe contraceptives, given that physicians
prescribe all kinds of medications that are riskier and achieve goals that
patients value much less.

In contrast, the Way of Medicine urges us to ask a different set of questions.
The first question is: What do contraceptives have to do with health? In this
case, how is prescribing contraceptives consistent with the physician’s

vocational commitment to preserve and restore the health of Cindy Parker?
As we’ll see in chapter 6, the answers to these questions are not as
straightforward as physicians’ customary practices suggest. For the
moment, though, suffice it to note that the Way of Medicine suggests it
would not be arbitrary for Ms. Parker’s physician to decline to prescribe
contraceptives if, in the physician’s reasoned judgment, the contraceptives
either contradict or are beside the point with respect to the patient’s health.

ABE’S REQUEST

Abe Anderson is a fifty-year-old carpenter. He has smoked two packs of
cigarettes each day for thirty years. Mr. Anderson has a particularly
bothersome respiratory infection, with fever, fatigue, and a hacking cough
that is productive of thick yellow sputum. His wife has persuaded him to see
a physician. Mr. Anderson asks for antibiotics.

This seemingly anodyne case of routine primary care medicine exposes
inconsistencies in how physicians understand their obligations, and it opens
up critical distinctions between the Way of Medicine and the PSM. Should
Abe’s physician prescribe the requested antibiotics? If so, why? If not, how
can she justify the refusal?

To experienced clinicians it may seem obvious that the physician should
judge whether she thinks the respiratory infection is viral rather than
bacterial and, if it is viral, she should refuse to prescribe antibiotics. This
refusal would be justified because physicians are not obligated to prescribe
treatments that do not work (e.g., antibiotics for viral infections), because
the principle of justice requires considering the downstream effects of
antibiotics on future patients (namely, greater bacterial resistance to
antibiotics in the community), and because the principle of nonmaleficence
would encourage the physician to avoid the adverse side effects of the
antibiotics for Abe, including potential allergic reactions and loose stools.

In this case, it might be argued, the physician has strong medical reasons for
refusing what the patient requests.

But reality is more complicated. The risk of significant harm to Mr.
Anderson from a course of antibiotics is quite low, likely lower than the risk
of harm to Ms. Parker posed by long-term use of hormonal contraceptives.
Moreover, there is some nonzero probability that Mr. Anderson’s physician
will mistake the diagnosis, failing to see that Mr. Anderson does in fact
have a bacterial infection and would recover more quickly with antibiotic
treatment. Doesn’t Mr. Anderson have a right to accept the risks of the
antibiotics and make an informed choice about whether to take them?
Doesn’t respect for his autonomy require accommodating his choice?

Apart from the ambiguities posed by probability and uncertainty, we have
already noted that the PSM eschews any shared standard against which to
judge requirements for beneficence and nonmaleficence. Mr. Anderson
might say, “Doc, I value having the antibiotic, even if you do not think it is
likely to benefit me. I think it will be good for me, and after all, it is my
body and my health we are talking about, right?” He might note that the
remote possibility of harm caused by the antibiotics is outweighed by the
certain harm of him worrying for days that he might develop bacterial
pneumonia, not to mention the cost (another harm) of having to come back
to see the physician again if he does.

It turns out that in the PSM, even the claim of having medical reasons to
refuse Mr. Anderson’s request starts to break down in light of the fact that
the profession allows physicians to prescribe antibiotics in such cases, and
many physicians do. In the absence of a reasonable standard—say, health
objectively defined—the physician’s medical reasons appear to be arbitrary
impositions of power over the patient, unjustly curtailing the patient’s right
to make informed autonomous choices regarding his medical care.

As both Abe’s and Cindy’s cases display, invoking midlevel principles does
not lead to moral clarity without an account of what medicine is for that
might help to specify those principles. Principles can be balanced ad
nauseam, but the balancing itself appears arbitrary and determined by
power relations unless we presume that medicine is oriented toward a real
good that can be known and to which the clinician is reasonably committed.

For the Way of Medicine, Mr. Anderson’s case remains complex, but the
complexities shift. The physician begins with a commitment to the good of
Mr. Anderson’s health. Her actions are reasonable insofar as they are
conducive to Mr. Anderson’s health, and they are unreasonable insofar as
they contradict his health. This does not mean that Abe’s request has only
one ethical response. Medicine is beset by uncertainties and probabilities,
after all, and one physician might judge that antibiotics are worth
prescribing despite the low probability of benefiting Mr. Anderson’s health,
because the corollary risk of harm is so low. Another might judge that
antibiotics should be avoided despite the low risk of harm because the
likelihood of benefiting Mr. Anderson is also low.

According to the Way of Medicine, the physician has the authority to decide
which interventions to offer, based on her threshold judgment regarding
whether the interventions in question will preserve or restore the patient’s
health (and there is proportionate reason to accept their side effects; more
on that in chapter 5). A good physician will not insist that a patient follow
the one route the physician believes is best. The physician may advocate
one strategy, but she will allow the patient to choose a different course as
long as she determines that the patient-suggested course sufficiently
addresses a health-related need and does not violate other moral
requirements. Making such determinations is ultimately the work of clinical
judgment. Physicians attain clinical judgment, which in turn should be
guided by the virtue of prudence, only through a combination of experience,
reflection, and commitment to the true end of medicine.

NORA’S LIMITS

Nora Garcia is an eighty-year-old widow who in recent years has grown
frail. Mrs. Garcia comes for her usual quarterly appointment with her
geriatrician. She notes, “I feel like I don’t have long to live. I am getting
tired. I don’t want to be put on all of those machines my husband was put
on. Should I have a do-not-resuscitate order?”

What is the doctor’s role with respect to Nora? Should he encourage her to
make the decision that he believes is best or simply give her the facts? What
would characterize good counsel about limiting the use of medical
interventions that might otherwise extend Mrs. Garcia’s life?

Once again, under the PSM, Mrs. Garcia’s physician should seek to help her
make the decision that fits what Mrs. Garcia values. The physician should
ask her what she cares about and offer her strategies that align with her
values, including, perhaps, a do-not-resuscitate order.

The PSM does not encourage the physician to ask what would be a good
decision for Mrs. Garcia to make. As long as Mrs. Garcia’s choice is
permitted by current law and policy, her choosing alone makes the choice
ethical. The physician’s role is to give accurate information to help her
make an informed choice.

By contrast, in the Way of Medicine the physician encounters Mrs. Garcia
with a preestablished orientation toward her health. That does not mean that
the physician is determined to do everything possible to preserve any
measure of health. Indeed, the wise physician acknowledges that health is a
good that can be possessed only in part, and only for a time. The wise
physician also recognizes that health is not the only good the patient should
consider. The physician, then, respects Mrs. Garcia’s authority to make
judgments about the extent to which efforts to preserve her health fit her
vocation, all things considered.

Unlike under the PSM, however, a physician practicing according to the
Way of Medicine does not seek a decision that aligns with Mrs. Garcia’s
wishes. Rather, he seeks a decision that makes wise use of medicine
(including by putting some limits on medical interventions) to preserve and
restore Mrs. Garcia’s health, given her vocation and what she will consent
to. The physician takes into account the fact that Mrs. Garcia’s health is
limited, her mortality bears down on her, and other goods might be more
important to her than her health. He counsels her to make the decision that,
all things considered, he believes is best, and he respects her authority to
decline his recommendations. He might readily encourage the patient to

have a do-not-resuscitate order. He might encourage her not to. But through
it all, he remains committed to serving the health needs of his patient, Mrs.
Garcia.

SOLIDARITY AND TRUST

A particular virtue is essential for manifesting and maintaining the
commitment to serving patients’ health needs: the virtue of solidarity. The
relationship between the physician and Mrs. Garcia must be characterized
by trust and trustworthiness. In the remainder of this chapter, we address the
roles of solidarity and trust in the Way of Medicine.

Solidarity and trust are features of any flourishing community, and also of
the community formed between doctor and patient. Recall that physicians’
constitutive vocational commitment—the commitment that distinguishes
them from philosophers, priests, and dancers—is to health. But physicians
do not commit to health in the abstract or even to the health of populations;
rather, they commit to the health of their patients—that is, health as
instantiated in the particular persons to whom they attend.

Put another way, a doctor is vocationally committed to a specific kind of
community with a particular kind of common good. A common good is a
good mutually willed by participants in a cooperative, mutually giving
relationship. The common good of friends is their friendship, plus whatever
other goods they pursue together as friends. The friendship example
highlights something that applies universally: one cannot will the common
good of a community without also willing the good of the community
members. Some group members may be in it for themselves, and if so, they
frustrate the possibility of the group’s forming a genuine community.
Humans can reach their fulfillment only in community, and genuine
community, including that formed between a doctor and her patient,
requires its members to will and act for each other’s good.

Solidarity

Solidarity is the name for this stance without which there can be no
common good, no genuine community, and ultimately no human fulfillment.
Solidarity is a firm and enduring commitment to the good of other persons
and thus to the common goods of one’s communities. Solidarity is not
simply a concern for the collective, humanity in the abstract, or goods in
the abstract. It requires concrete relationships in particular communities,
including the relationships that form communities between physicians and
patients. The Way of Medicine requires physicians to show solidarity with
their individual patients—to be firmly and concretely committed to their
patients’ good.

But how can a patient have solidarity with his doctor, since the purpose of
the doctor-patient relationship is to pursue the patient’s good? Do doctors
and patients not have a rather one-sided community? The answer is simple
but important: patients should will the doctor’s good in the way that patients
can, which is to will their doctor to be a good doctor in all the relevant and
necessary ways. The patient wills this not simply so that she will be cured
(she might not be, even with the best doctoring) but also because being a
good doctor is good for the doctor; through practicing good medicine the
doctor flourishes and finds fulfillment as a person. Thus, when a patient
treats the doctor as a functionary or lies to or seeks to manipulate the doctor,
the patient fails to show solidarity. Such failures of solidarity rupture the
community of the doctor-patient relationship as much as do failures of
solidarity on the part of the physician.

Physicians can and do fail in solidarity toward their patients. Some doctors
are in medicine for themselves, regularly putting a patient’s good behind
other concerns, such as financial gain, time at the golf course, or the
demands of an insurance company. These failures are obvious, but
physicians are also prone to two less obvious failures of solidarity.

(1) Physicians can be concerned with medicine and health without being
concerned for their patients. Perhaps a physician sees health as a goal and
treats his patients as opportunities to achieve health. This detached

approach makes some methodological sense. In the surgical operating
room, efficiency and effectiveness are often served by treating the patient as
an object subject to scientific investigation and technical control. The
problem emerges when such treatment is not governed by an overarching
commitment to this patient’s good. Such patients often report that they were
treated “like an object.” Insofar as a surgeon sees a patient as a technical
problem, for example, he fails to see that patient as a person. Medical
subspecialization exacerbates this tendency, habituating physicians to focus
only on the diseased or defective parts of a patient rather than on the patient
as a whole. Patients also often report that they were treated “like a number,”
reflecting a tendency for physicians to service as many bodies as possible in
the allotted time, often in order to maximize efficiency and profit.
Physicians with each of these tendencies, while overtly pursuing health, fail
to show the solidarity physicians owe to their patients.⁶

Perhaps a physician is concerned with his professional integrity, but that
concern is detached from an orientation toward the good of the patient’s
health. The doctor may be drawn to an ascetic, unsullied lifestyle as a
physician who practices with professional integrity and purity, but his desire
to remain above the fray also leads him to detach from human concern for
his patients. This condition may seem unusual, but describing it makes the
point that a physician’s concern for his integrity can become self-centered if
that concern is divorced from the patient’s health as the end of medicine and
if it is not accompanied by the virtue of solidarity. Further, it isn’t adequate
for a physician to participate only in the community of physicians; in such
cases a doctor’s allegiance to the guild becomes primary. Allegiance to
one’s guild can be important, but such allegiance contradicts itself when it
displaces the solidarity with patients to which the guild professes and on
which the guild’s practice depends.

(2) The second failing of physicians is that which most characterizes the
PSM: being concerned for the patient’s good while denying the possibility
of knowing what that good is and what concern for it requires. Such
concern reduces to providing patients with what they desire and
autonomously choose. In such an approach, there can be no solidarity, for
no actual common good exists between the physician and the patient. In
practice, many—perhaps even most—physicians and patients break through

the constraints of the PSM to form genuine communities with one another,
but in doing so they run against and expose the inadequacies of the PSM’s
logic. Ideas have consequences: if there is no genuine good, there is no
good in common; if patients and physicians have no good in common, no
genuine solidarity and community are created between them. The logic of
the PSM undermines the doctor-patient relationship.

This portrait of the doctor-patient relationship as a community, however,
raises a different worry: that the portrait fails to respect boundaries
appropriate to the kind of relationship that physicians and patients share.
Yes, physicians are concerned for and have solidarity with their patients as
whole persons, not as objects or as collections of parts, but surely the whole
person includes much that is not the doctor’s concern and perhaps none of
the doctor’s business. Indeed, on the Way of Medicine, the physician’s
concern is the patient’s health, not the entire array of goods that have a
place in the patient’s life.

We think a middle path exists between the detached posture that treats the
patient as an object with whom the physician has no solidarity and the
enmeshed mode that, in service to being holistic, makes it the physician’s
business to care about everything that matters to the patient. Patients are
living bodily beings, and so the physician who attends to a patient’s health
—a characteristic of the body as a whole—thereby attends to the patient as
a person, even if the physician focuses only on this one dimension of the
patient’s personal existence. The same is true in other social contexts.
Teachers’ concern for their students, for example, does not typically extend
to the students’ home lives, but good teachers nonetheless are concerned for
the good of their students as persons. (Think of how odd it would be for a
teacher to simply want there to be more knowledge in the world, and to
think of students as the objects in which this knowledge was to be realized.)
The challenge for physicians and for teachers is to be concerned in the right
way.

The right way displays the hallmarks of solidarity. Think, for example,
about the importance of listening and communicating in relations between
persons. Think also of the virtues that go with listening and communicating
well: honesty, tact, patience, and silence, as well as politeness, respect, and

humility. These virtues all manifest solidarity: goodwill toward another as a
person for whom one has a special care and concern. Such solidarity also
requires acknowledging and respecting the patient’s authority. The doctor is
concerned for the whole person but not by seeking to influence all aspects
of the person’s life. Rather, respecting the patient’s authority, the physician
enables the patient to make decisions in the domain of health that fit the
patient’s vocation as a whole person.

Because the physician ultimately cares for the patient, occasionally that care
cannot be confined merely to the good of health (a parallel statement can be
made regarding teachers and the good of knowledge). Sometimes
physicians can reasonably meet a patient’s request for prayer, marital
advice, or urgent assistance in some other domain. Physicians need
prudence in discerning when such actions complement the physician’s
vocational purpose—seeking the patient’s health—and when they might
interfere with or problematically distract from that purpose. The PSM,
interestingly, has no way of distinguishing between and ordering the two
kinds of actions because it does not distinguish actions oriented toward
health from actions oriented toward other aspects of patient well-being.⁷

Trust

Classically the professions respond to particular vulnerabilities that
individuals face; such vulnerabilities call for trust on the part of the
vulnerable and trustworthiness on the part of those caring for them.
Solidarity is so important for the practice of medicine because in order for
physicians to help patients, patients and physicians must be able to trust
each other.

Patients often seemingly have no choice but to rely on their physicians.
Patients do not control when and how they come under their physicians’
care, and often they lack the knowledge or wherewithal to evaluate whether
the physician is doing a good job. But trust and reliance are different. We
rely on something when we simply count on it, and sometimes we count on

something when we have no other choice in the matter. Moreover, reliance
does not require a personal relationship: you probably rely on your car, but
you don’t trust it. You don’t feel betrayed when it conks out, although you
might feel other unpleasant emotions.

Trust, by contrast, entails having faith in someone, having confidence that
the person will act toward you in ways governed by genuine concern.
Children trust their parents once they become old enough to understand the
nature of their parents’ relationship to them. When older children merely
rely on their parents—as providers of food, clothes, and shelter—that
evidences a breakdown in the child-parent relationship. Patients certainly
rely on doctors—on their technical skills, their showing up during clinic
hours, and their billing tools. Yet doctors can prove reliable in all of these
and other respects without ever caring about their patients as persons. Such
doctors cannot be called trustworthy, as they have no genuine community
with their patients. Absence of trust undermines the doctor-patient
relationship. The practice of medicine requires a relationship of solidarity,
at least according to the Way of Medicine.

CHAPTER FOUR

Autonomy and Authority

In our effort to identify a more adequate framework for medicine, we return
to the crucial concept of autonomy. The provider of services model (PSM),
in its opposition to the overly paternalistic bioethics of the first half of the
twentieth century, has made autonomy its cornerstone concept,
overemphasizing it, we believe, to a detrimental degree. That being said, the
Way of Medicine also values autonomy, properly understood. In the present
chapter, we aim to clarify what good autonomy is and how it relates to the
practice of medicine. We also introduce another concept, authority, that is
essential to understanding the Way of Medicine.

AUTONOMY

Medical practice is shaped by the philosophies of the age. If nothing else,
the philosophies of our age emphasize the importance of individuals’
directing their own authentic self-expression and self-development. This
cultural emphasis has profoundly shaped public expectations of medicine,
making autonomy the central feature of contemporary medical ethics.
Unfortunately, medical practitioners have come to misunderstand autonomy
along the way, and medical ethicists have come to overstate its importance
greatly, leading to distortions in contemporary medicine and medical ethics.

Contemporary medical ethics came to focus on autonomy in response to
what were obviously violations of autonomy, particularly cases in which
medical researchers and practitioners withheld or subjected patients to

interventions without the patients’ consent. The Tuskegee syphilis
experiments are among the most infamous of such cases. Apart from
infamous cases, however, physicians often failed to adequately inform
patients about their conditions and the courses of action available to them.
Physicians also failed at times to obtain consent from patients before
enacting the treatment that the physician deemed best. This pattern came to
be described as medical paternalism, by which physicians assume they
know what is best for patients and presume that they have the obligation or
right to act for that presumed best. As the Tuskegee experiments show,
assuming physicians’ benevolence leaves patients unprotected when
medical researchers are more interested in societal benefits than in benefits
to individual patients. Even when physicians genuinely care about their
patients, something important is missing if the patient does not have the
opportunity to understand and at least implicitly consent to the physician-
proposed treatment.

A move toward autonomy-based medical ethics sought to correct the errors
of medical paternalism, but it also dovetailed with intellectual currents that
date back to the origins of contemporary liberalism. These intellectual
currents hold that our social and political life should recognize and foster
people’s freedom, equality, and independence. How, people reasonably
asked, are freedom and independence upheld when researchers or
physicians act on patients without their knowledge or consent? Where is the
equality between patient and doctor when the doctor can decide on a course
of action unilaterally? Drawing on classical liberal sources such as
Immanuel Kant and John Stuart Mill, twentieth-century ethicists argued that
the virtues of liberal society could be realized in medicine only through the
practice of obtaining informed consent whenever a physician or researcher
proposed to do something with, to, or on a patient.¹

Misunderstandings about Autonomy

Twentieth-century ethicists understandably emphasized informed consent,
but on the heels of this emphasis two misunderstandings regarding

autonomy have come to distort medical practice.

Misunderstanding 1: An autonomous choice is a right choice. In one view,
autonomy is singularly important because what makes a choice right is the
autonomy itself. We call this the radical autonomy view. By “radical” we do
not mean that its advocates operate outside the political mainstream;
rather, we mean that in this view the exercise of autonomy itself
fundamentally (radical means “at root”) affects the nature of the choice,
making the choice right.

The radical autonomy view has its origins in the work of Immanuel Kant,
for whom autonomy was present only in a choice made in accordance with
the categorical imperative: act only according to that maxim whereby you
can at the same time will that it should become a universal law.² A will
acting in accordance with such a maxim, argued Kant, was not determined
by any incentive such as might be provided by a mere desire; that will was,
accordingly, free and autonomous.³

More recently, the idea that an autonomous choice is an ethical choice has
become detached from the categorical imperative and transformed into
something that Kant would not recognize but that some thinkers have
dubbed “expressive individualism.”⁴ According to expressive
individualism, the rightness of a choice is a function of its authenticity,⁵ a
conceptual cousin of autonomy. One is authentic if one is one’s own person
—that is, self-governing and autonomous. A famous expression of this view
is found in Supreme Court Justice Anthony Kennedy’s decision in Planned
Parenthood v. Casey, a case involving abortion rights. Kennedy wrote, “At
the heart of liberty is the right to define one’s own concept of existence, of
meaning, of the universe, and of the mystery of human life.”⁶

In Kantian ethical theory, respect for another person’s autonomy can lead
directly to an obligation to obtain that person’s consent before engaging in
any medical intervention. But as cultural assumptions about autonomy have
drifted further from Kant, the view that respect for autonomy requires
obtaining informed consent has been supplanted by the view that we owe
positive respect to any way in which others “define [their] own concept of
existence, of meaning, of the universe, and of the mystery of human life.”

Stephen Darwall has called this sort of respect “appraisal respect.”⁷ In the
domain of medicine, the radical autonomy view expects medical
practitioners not merely to tolerate autonomous choices with which they
may disagree; increasingly, this view expects physicians to honor and
facilitate such choices.

This expectation of radical autonomy, and the underlying influence of
expressive individualism, pop up around many of medicine’s most vexing
issues. For example, in the realm of death and dying, much of our culture,
including important parts of our medical culture, has moved from requiring
physicians to respect a dying patient’s refusal of further life-sustaining
interventions to the view that the dying patient has a positive right to a
physician’s assistance in dying. Brittany Maynard put it plainly in her
online manifesto: “I want to die on my own terms. . . . My question is: Who
has the right to tell me that I don’t deserve this choice?”⁸ Following Ms.
Maynard’s view, undergirded implicitly by expressive individualism,
doctors who care for patients like her must provide death, or the means to
death, if that is what the patient autonomously chooses.

For a second example, consider the emphasis on choice that pervades
discussions of abortion, contraception, and reproductive questions more
generally. As with dying, those who invoke the importance of autonomy
increasingly claim not merely that practitioners must abstain from
interfering with patients’ choices in reproductive matters but also that
practitioners must positively respect those choices and help patients carry
them out. In this way, medical practitioners’ objections to providing
abortion or contraception are overruled in favor of what a person has
autonomously chosen.

To take up a final issue receiving attention currently, consider the growing
movement for transgender rights and equality. We hold that all human
persons are equal and equally deserving of basic human rights, whether
they are trans- or cisgendered. But many in the transgender movement also
hold that an individual’s autonomous desire to change gender should be
normative for the medical profession. In some states practitioners are
legally prohibited from counseling practices that seek to help adolescents

sustain a gender identity that matches their biological sex.⁹ Medical
practitioners are increasingly expected to support and assist those wishing
to have their secondary sex characteristics changed through medical and
surgical interventions. We discuss the medicalization of gender identity and
expression at length in chapter 6.

In these areas and others, the radical autonomy view expects patient
autonomy to set the template for what physicians and other medical
professionals may, must, and must not do. This misconstrual of autonomy
and what it requires, however, undermines the practice of medicine and
proves inherently unstable. First, the radical autonomy view reduces the
medical practitioner to a kind of functionary whose job is to provide desired
services to the patient, regardless of the practitioner’s considered judgment
about the wisdom or morality of doing so. What matters is patient choice,
the central concern of the provider of services model (PSM). This reduction
contradicts the Way of Medicine’s understanding of medicine as a
profession in which practitioners are characterized both by a commitment to
the good of health for the patient and by a practical wisdom or clinical
expertise related to that good. Under the PSM, practitioners are
distinguished not by their wisdom but by technical skills that allow them to
accomplish what few others can, and perhaps also by participation in a
social contract according to which they may exercise those skills on others
if in service to these others’ authentic wishes. Lost here is any sense of the
physician’s calling to serve persons by seeking an authentic and objective
good for them.

The radical autonomy view similarly reduces the doctor-patient
relationship. In the Way of Medicine, doctor and patient work together to
understand, pursue, and achieve what is genuinely good for the patient.
Their relationship forms a community of solidarity and trust. The doctor
serves the patient, but not in a way disjoined from her own good; indeed, in
pursuing the patient’s good, the doctor achieves her own good as a doctor.
In contrast, if the physician must be in thrall to the patient’s desires and
choices even when those choices contradict the physician’s best judgment,
the physician loses the basis for thinking that the practice of medicine
coheres with a good life, and the patient loses the basis for trusting the
physician to act only for the patient’s good.

Moreover, the radical autonomy view proves inherently unstable, for in
granting radical autonomy rights to patients, the view unjustifiably
eliminates physicians’ autonomy. Consider the physician who
conscientiously objects to participating in assisted suicide, believing that
the practice contradicts the physician’s profession to heal and never to
harm. In the face of a patient’s autonomous demand, the radical autonomy
view expects the physician to set her convictions aside or leave the medical
profession altogether.¹⁰ But how does this expectation respect the autonomy
of the physician? What warrants such an incursion on the physician’s
capacity for self-government? The radical autonomy position has no good
answer.

Misunderstanding 2: Autonomy is the greatest human good. Aside from the
claim that an autonomous choice by its nature is a correct choice, a related
but different view treats autonomy as the greatest of the human goods—the
one that is singularly important for making our lives go well. We call this
the autonomy-first view.

Those who emphasize autonomy recognize correctly that autonomy and
human flourishing are connected, but the autonomy-first view
misunderstands the connection. Unlike goods such as health, knowledge,
friendship, or religion, which in themselves make a person better off,
autonomy makes a person better off only insofar as it is directed toward
instances of these and other basic goods.¹¹ Put differently, an autonomous
choice is a good choice only when it is a choice for a good; this can be seen
whenever someone makes a self-destructive choice.

Indeed, even a choice for a good can go wrong if the choice is not guided
fully by reason. For example, a person who pursues her own health (a
genuine good) but does so in a way that disregards foreseeable downstream
effects on others (thereby failing to be fair to those others) not only makes a
bad choice but also contradicts her own good insofar as her flourishing
depends on acting with integrity.

The Importance of Autonomy

Still, autonomy is important to a good and upright life. In the most intuitive
sense, autonomy involves a person’s freedom to be self-governing. This
intuitive understanding reflects the etymology of the word: nomos is Greek
for “law,” and auto means “self.” So an autonomous person is in some way
a law unto himself, or self-governing.

But why should people care about being self-governing—deciding for
themselves how to live and act? Recall that a good life is lived in pursuit of
basic goods, individually and socially. Moreover, a good life is shaped by
concern for that life as a whole. We suggested understanding this concern in
the sense of a rational life plan, and even more adequately in the sense of
vocation: a life of pursuing basic goods for human persons to which one is
called and in which one makes good use of one’s talents, interests,
sympathies, and opportunities.

Such a life clearly requires commitments to goods as well as persons, for at
least two reasons. First, some goods—such as friendship, marriage, and
religion—are fully realized only by persons who have made commitments,
such as to a friend, a spouse, or God. Moreover, these commitments are real
only if they are a person’s own commitments, if she has really made them
for herself. This insight, central to arguments for religious liberty, brings
into view an initial reason for the importance of autonomy: some human
goods cannot be realized at all unless individuals are free to make and
follow through on their own commitments.

A flourishing life requires commitments for a second reason that bears even
on those goods that can be realized without commitment. Consider, for
example, the good of human life. Every baby participates in this good
despite not yet making any commitments. But many babies could not enjoy
this good were it not for commitments many other people make: doctors
and nurses to care for them, researchers who discover new ways of
maintaining and fostering human life under adverse circumstances, and
family members on whose love and concern the babies depend from the
outset of their existence. Commitments help human beings in community
realize goods to a greater degree, in themselves and one another.

Such commitments are often social: researchers in any field collaborate and
engage with predecessors and successors in pursuing the knowledge they
seek. They inherit a body of knowledge and skill with which to work, and
they pass new and improved knowledge and skill to future generations. The
Way of Medicine itself has built up over centuries through this kind of
collaboration.

These commitments, in turn, go better if they are the agents’ own
commitments. Imagine a world in which people are chosen to be doctors
and have little say in the matter. In such a world, doctors’ flourishing would
be stunted by their failure to do what they are called to do, and patients
would suffer insofar as their physicians fail to be intrinsically motivated for
and invested in their work.

Moreover, not everyone is cut out to be a physician, just as not everyone is
meant to be a philosopher. Judiciously discerning whether one should
commit to one line of work or the other (or both or neither) seems to require
taking honest account of one’s abilities, dispositions, and opportunities.
And who is best situated to take all of these into account if not the person
himself, the one who must eventually make the commitment? Again, we
need autonomy to deliberate practically about what commitments we should
make.

What is true in making commitments is mirrored in their upshot: the
obligations that commitments generate. Marital commitments bring marital
obligations. The commitment to practice surgery brings obligations for the
surgeon. An individual who is best situated to know to what she has
committed is likewise best situated to know what obligations follow from
that commitment. Individuals aren’t free, of course, to make up the
obligations that follow from their commitments. A married person cannot
reasonably say, “Well, for me, the marriage commitment includes openness
to other sexual partners.” A surgeon cannot reasonably say, “Well, for me, a
commitment to surgery means I get to recommend the surgery for which I
get paid the most.” Our argument does imply, however, that married persons
and surgeons both need the space to make judgments about what their
vocational commitments require. Does my marriage commitment mean
quitting the job I enjoy so that my wife can pursue the job for which she

seems particularly well suited? Does my commitment to surgery mean
operating on a patient who is dying even though the odds of success are
small? Giving people the space to engage in such discernment and to act on
their judgments seems reasonable—more reasonable than deciding for
another person what she must do.

For all of these reasons, autonomy, properly understood, contributes a great
deal to human flourishing,¹² and physicians go astray if they treat it as
unimportant.

AUTHORITY

By deploying the concept of authority, practitioners and ethicists can affirm
what is true and important about autonomy while avoiding the false
implications of the radical autonomy and autonomy-first views.

Medical decisions are made in a social space that includes multiple parties:
the patient, the patient’s family and friends, the medical professionals
involved, and others, such as institutional decision-makers, insurance
providers, and clergy. All decisions involving more than one party have a
similar problem: given that the various persons involved have different
reasons for acting, how do they reach a final decision?

John Finnis has pointed out that there are only two possible ways:
unanimity or authority.¹³ No further options are available, for unless there is
unanimity, every way of making a decision involves some form of
authority. Even a vote in which the majority wins substitutes the authority
of the majority for the decision of all.

At least two different forms of authority at work in the medical context
must be distinguished in order to respect their nature and limits. The doctor
typically has the authority of expertise. She knows what health is and what
interventions will preserve or restore health, as well as in what ways and
with what costs and side effects. She also may have the authority of

expertise with regard to what the healthiest outcome would be. Sometimes
there is clearly such an outcome, and the doctor will speak authoritatively
about that outcome to the patient.

But the authority of expertise has its limits. The physician must recognize
that the best health outcome (the one most congruent with the patient’s
medical best interests) is not always the best outcome overall and that often
no best health outcome exists anyway. This second, more limited claim
implies the first, so let’s consider it up front.

In his essay “Searching for Moral Certainty in Medicine,” Mark Siegler
writes of a professional dancer with asthma.¹⁴ When she begins to seek
treatment, the dancer first finds a doctor whose treatment plan allows her to
dance but also allows her to suffer some breathing problems, and then a
doctor who refuses to offer any treatment plan that does not maximally
alleviate her impaired breathing, which requires that she not dance. What
seems best to the first doctor—and, importantly, to the patient—is that the
dancer be able to dance, even if the treatment that secures that outcome
carries risks of impaired breathing. What seems best to the second doctor is
that the dancer be able to breathe freely, even though the side effects of
effective treatment will leave her no longer able to dance. Is one of these
doctors obviously right about the best health outcome? On the contrary: we
submit that no doctor can say for sure which outcome is the more healthy.
Each outcome preserves certain aspects of the dancer’s health while leaving
other aspects untouched or even impaired.

Moving now to the stronger claim, no doctor can say how important these
aspects of health should be relative to the other goods that the patient might
seek given her vocation. Being able to dance and being able to breathe seem
genuinely incommensurable. So do the risk of death brought on by
incompletely controlled asthma and the certainty of not being able to dance
brought on by effective asthma medications. The overall outcomes—the
health-related outcomes plus the various other benefits and burdens
incurred in pursuing those outcomes—are likewise incommensurable. No
authority of expertise can discern the best course of action for this dancer in
her particular context.

We need a second form of authority. Consider again the claim that even if
we focus just on health considerations, sometimes there is no best medical
course of action. All medical interventions offer not only benefits but also
burdens—side effects that are not chosen but that inevitably accompany the
benefits promised. Sometimes, different interventions present very different
health benefits, and to pursue one set of benefits often means forgoing the
other. In such cases, not achieving one set of benefits is a side effect of
seeking to achieve another set. Because the options are incommensurable,
the patient may not have the option of choosing a best health-related
outcome.

As the dancer’s story indicates, health outcomes are not the only ones
implicated in medical decisions: medical decisions have consequences for
other goods, basic and instrumental. One intervention might keep a patient
alive longer but also keep him from fulfilling certain responsibilities. For
example, a patient might be offered a special lung transplant that is
available only if the patient relocates across the country, away from all
family and friends. The patient must factor in such burdens in order to make
a wise choice about pursuing the intervention. More generally, an
intervention might involve procedures repugnant or immensely painful to
the patient, or the intervention might be time-consuming and expensive. In
such cases, even where a best possible health outcome seems apparent, the
patient still faces a decision about whether, all things considered, pursuing
the best health outcome makes sense given the burdens that will follow.

The question is, Who should decide and why? Our answer here plays an
important role throughout the rest of this book. The provider of services
model (PSM) of medicine, with its singular emphasis on autonomy, sees the
answer as straightforward: the patient should decide. The patient should
decide either because the right decision is de facto the decision the patient
makes (radical autonomy) or because freedom to decide is the most
important aspect of human flourishing (autonomy-first). We agree that the
patient should decide, but for different reasons. From the perspective of the
Way of Medicine, the patient should decide because the patient possesses
the authority to decide.

Let’s step back. Someone or some group must have authority to make that
decision. The decision-makers should take into account the various benefits
and burdens that follow from different courses of action, but those benefits
and burdens are often incommensurable. What standards, then, can be
brought to bear to discern a reasonable medical decision?¹⁵ One obvious
standard is the patient’s health. What can be done that offers a reasonable
hope of benefiting the patient’s health? The physician, as we suggested
above, has the authority of expertise regarding this standard, and therefore
the physician has authority with respect to what medical interventions the
physician will offer. This genuine form of authority should not be abused or
disrespected—not by the physician, who might try to extend this authority
beyond its reasonable limits, and not by the patient, who might demand
from the physician something the physician believes does not offer
reasonable hope of benefiting the patient’s health. The physician’s authority,
which derives from his vocational commitments, thus establishes an initial
framework for the choices that the patient must make.

But once courses of action that the physician believes reasonably pursue the
patient’s health are in view, what standard can be brought to bear to discern
the best overall option? This standard should be the patient’s vocation.

Think again of Siegler’s dancer. The dancer clearly has shaped and will
continue to shape her life in terms of those basic goods to which she has
made vocational commitments. She pursues her art, and the goods of
aesthetic experience and work, with devotion and craft. Perhaps, as for
many persons, these commitments are ordered and integrated by other
commitments, such as marital or religious commitments. All of these
vocational commitments provide a framework within which the dancer
reasonably considers the various burdens and benefits her physician offers,
and these burdens and benefits together determine what decisions are
reasonable for the dancer in this situation.

Note how differently thinking about one’s vocation works compared to a
bare appeal to autonomy. In the Way of Medicine, the patient can make an
apparently autonomous choice and still go wrong. She must be courageous,
not allowing unreasonable fear to sway her; she must be prudent, not
allowing unreflective desires to lead her away from a reasoned assessment;

and she must be just, taking account of her responsibilities and the way that
different choices will impact her ability to fulfill her obligations. If our
dancer has a small child, for example, it might be both unjust and imprudent
for her to pursue dance at the cost of a higher risk of dying. Alternatively, if
the risk of death is very low even with suboptimal management of her
asthma, she might be cowardly to give up her work and art for the sake of
reducing a risk that is already so small.

The patient can go wrong in assessing what her vocational commitments
require, but still she has the best epistemic access to what those
commitments are and what they imply for this medical decision. The
dancer’s personal vocation provides the necessary standard for her to
reasonably weigh the various incommensurable benefits and burdens of
each option and decide which to pursue.¹⁶ She might need advice from
someone else to help her consider her options, but even such advice serves
primarily to help her take the measure of her own vocation and its
implications for her life.

The concept of authority has another feature that autonomy lacks. It helps
medical practitioners discern how to respond when a patient chooses a
course of action that the physician believes is foolish or even unethical. As
everyone knows, authority is no guarantee of its own wise exercise, yet lack
of wisdom does not vitiate legitimate authority. Sometimes physicians have
good reasons to follow the courses of action that patients choose, even
when the physicians are convinced that their patients should have made
better choices.

In such cases a physician might reason with a patient and attempt to
persuade him that he is exercising his authority in a less than fully
reasonable way. Quill and Brody, in a critique of the PSM’s tendency to set
physicians at odds with their patients, argue that such efforts by physicians
to counsel and persuade patients, rather than violating autonomy, actually
support “enhanced autonomy.”¹⁷ Such efforts do so by giving patients more
information to consider in making their decisions. Quill and Brody’s
critique shines light on deficiencies in autonomy as popularly understood,
and we believe their critique would be expressed more adequately in terms
of patient authority. After all, if an autonomous choice is self-ratifying, a

physician has no reason to argue with or even give more information to
someone who has made an autonomous decision. By contrast, prudent
exercise of authority often requires consultation with others. Parents have
authority over their children, but to exercise that authority wisely they often
need to take account of their children’s judgments and preferences.
Similarly, patients have authority to decide which medical proposals to
follow, but to exercise that authority wisely they often need to take account
of their physicians’ recommendations as well as the input of family and
friends and even other healthcare practitioners.

Unlike in the case of autonomy, the concept of authority carries with it
limits to that authority. Everyone knows that when political authority is
exceeded, the governed have reason to resist illegitimate directives. For
example, we commend US Army physicians who have refused to
participate in waterboarding and other forms of torture. Their refusals have
been justified insofar as orders to participate in torture exceeded the
legitimate authority of the ones ordering. Note that we would not commend
the same physicians for refusing to obey an order to take care of those
prisoners’ health needs or even for refusing an order to march into danger
with other soldiers, because such orders are within the scope of the
legitimate authority of military commanders. Those in power always exceed
the scope of their legitimate authority when they pressure the governed to
do something that is always and everywhere wrong.

This point about the limits of authority proves important in the medical
context. Recall that one complaint against the PSM, with its overemphasis
on autonomy, is that it reduces doctors to functionaries who must provide
whatever a patient requests. The motto of the PSM is not simply that
patients decide (choose), but also that physicians provide (obey). In
contrast, focusing on authority makes it clear that sometimes patients will
decide, autonomously, that they want something they do not have the
authority to demand. This situation arises whenever patients demand that
physicians act in ways that contradict physicians’ professional
commitments.

According to the Way of Medicine, a doctor’s professional commitments
and expertise give her the authority to decide what she is willing to do

within the framework set by her own vocation as a healer. The patient’s
authority is limited to requesting and then consenting to or rejecting the
options made available by the doctor; it does not extend to positive
entitlements justified by autonomous choices. Thus, if a patient requests
assistance in dying from a physician who, because of moral—including
professional—objections, does not offer that option, the patient is well
within her authority to seek another physician; but she is well outside the
scope of her authority to insist that her doctor provide assistance in dying in
the face of the doctor’s principled objections.

CONCLUSION

Autonomy matters for human flourishing and to the Way of Medicine. No
doubt in the past many physicians claimed a greater scope of authority than
was warranted. “The physician decides, the patient obeys” is not an
appropriate ethos for the doctor-patient relationship. Respect for autonomy,
however, does not mean embracing the radical autonomy and autonomy-
first views that undergird the PSM. “The patient chooses, the physician
provides” likewise fails as an ethos for the doctor-patient relationship. The
Way of Medicine respects the space practitioners and patients need to
exercise autonomy, but it recognizes that they have reasonable grounds to
do so only within the scope of their proper authority.

CHAPTER FIVE

The Rule of Double Effect

In this chapter we address a final foundational issue before turning to
explore the difference the Way of Medicine makes with respect to a number
of ethically disputed clinical practices. Our purpose here is to articulate and
defend the so-called rule of double effect. This rule plays an essential role
in the Way of Medicine. Indeed, as we will show, abandoning the rule of
double effect leads directly toward the provider of services model (PSM).

Our framework is robustly pluralistic about basic goods and about the
diverse ways that good lives can pursue these many goods. We have argued,
however, that some actions are never permissible for anyone. Moral
absolutes typically flow from the general norm: basic goods are never to be
directly (that is, intentionally) damaged or destroyed, whether out of
hostility or for the sake of some further good. That norm makes sense,
recall, because the basic goods are always good; therefore, hostility toward
them is always unreasonable. Basic goods are also incommensurable; it can
never be reasonable to destroy one good as a means to achieve a greater
good.

The Way of Medicine internalizes this requirement of practical reason,
particularly in its understanding of the physician’s central vocational norm:
never directly (that is, intentionally—as end or means) damage or destroy a
patient’s health and life. This norm starkly distinguishes the Way of
Medicine from the PSM, and it has obvious implications where issues such
as abortion and euthanasia are concerned, as we discuss in later chapters.
But the norm also raises a question: why are moral absolutes, including
those of the Way of Medicine, framed in terms of intention?

To explore this question, consider the options that patients typically face:
one set of health benefits is linked to one set of health burdens, and another
set of health benefits is linked to a different set of health burdens. The
options exclude one another. For example, a patient who chooses
chemotherapy may have prospects of longer life but will also face
significant burdens, including nausea, fatigue, mouth sores, and anemia, all
of which diminish the patient’s health. Similarly, a patient who declines
chemotherapy can expect to avoid these burdens but faces the prospect of
dying sooner, a result obviously contrary to the good of life and health.
Patients typically cannot avoid making choices that have negative
consequences for their health. Insofar as that is true, medicine’s chief norm
cannot be that physicians must avoid anything that causes damage or
destruction to the patient’s health. In many situations, physicians cannot
possibly comply with such a norm.

Note, however, that in the situation just described, the patient’s relationship
to the benefits sought or the burdens avoided differs from the patient’s
relationship to the benefits lost or burdens accepted. A patient who chooses
chemotherapy selects a set of health-related benefits and accepts a set of
health-related burdens as side effects. Such choices clearly differ from
intentionally choosing to damage one’s health or choosing to die.

Although a patient cannot always avoid choices that will result in damage
to her health, she can, always and everywhere, avoid choosing to damage or
destroy her health. She can avoid the latter choices even if in no other way
than by simply doing nothing. For even if she suffers injury to her health by
doing nothing, the injury is, again, a side effect of her (in)action. Thus,
moral absolutes speak to what one must never do intentionally. This focus
on intention is important to just warfare—where injury to civilians may be
accepted under some circumstances, but never intended. It is also important
to the risking of one’s life in pursuit of good ends—for example, in fighting
forest fires or seeking to rescue someone drowning, and, of course, to the
practice of medicine, which inescapably involves accepting the adverse side
effects of treatments. Thus, the norm is formulated: never intend damage or
destruction to a basic good.

ASSESSING SIDE EFFECTS

The rule of double effect can be put quite simply: sometimes an effect that
one should never intend can be accepted as a side effect as long as there are
proportionate reasons for doing so. (More traditional formulations of the
rule are more complex; we address them below when discussing intention.)

What is proportionate is one of the most important practical questions in
medicine. The answer provides the standard by which to judge many of the
most difficult questions physicians and patients face: whether to withdraw
or remove treatment when death is not intended but will follow as a
consequence, when the death of an unborn child can be accepted as a
consequence of actions taken to preserve the mother’s life, and many more.
Here we provide two general answers to the question about proportionate
reason, and we amplify those answers in context in subsequent chapters.

Before saying what a proportionate reason is, however, we should say what
it is not. It is not a reason that follows from weighing different goods to find
if the “greatest good” will be achieved as a result of the proposed action. If
it were possible to take the goods and harms of a proposed clinical
intervention and identify which proportion will bring about the greatest
good, consequentialism would seem to be a reasonable response. We would
want to maximize goods. But if, as we argue, such maximization is not
possible, “proportionate reason” cannot refer simply to the balance of good
over bad in an option.

Rather, proportionate reason must be understood by considering the goods
and harms of an option against a reasonable standard. Two standards are of
special importance: fairness and vocation.¹

Fairness

Recall that emotions and preferences, if not integrated by reason, can distort
our choices and blind us to the fact that the basic goods are good for all
human beings. Thus, a student might lie on his medical school application,
knowing that by doing so he is improving his chances of being selected
while hurting the chances of other, more highly qualified, applicants. He
might think, “I do not know those other applicants, and anyway I need to
look out for me.” Such thinking, like his act of lying, is manifestly unfair, as
the Golden Rule suggests. If six months later we told the student that he did
not get into the school of his choice because another student lied on her
application, this student would resent the other student’s lie.

In this example the effect of one student’s lie on another applicant is a side
effect. The student does not lie in order to hurt the other’s chances of
admission. He lies in order to gain admission for himself. He probably
recognizes that his action will disadvantage someone else, but that is not his
purpose. What makes his action recognizably unfair is that he seeks benefits
to which there are burdens attached, and he knowingly takes the benefits
entirely for himself while unjustifiably allowing the burdens to fall entirely
on someone else. This unfairness is a separate wrong from the wrong of
lying.

Similarly, in the case of the Tuskegee experiments, in all likelihood the
researchers did not intend the negative effects caused by not treating the
subjects in their study. Indeed, they may have rationalized their actions by
insisting that, unlike the researchers running some Nazi experiments, they
did not directly make their subjects sick. Nevertheless, we can see, and the
researchers should have seen, that in not treating their subjects, the
researchers sought the benefits of their scientific research and medical
knowledge for themselves and others while allowing the attached burdens
of the research—sickness and death—to fall entirely on those subjects. The
Tuskegee study was therefore manifestly unfair.

Principlists would say that the Tuskegee experiments were failures of
justice. Indeed they were, precisely because they were unfair. In general,
when principlists and others have drawn attention to abuses of vulnerable
populations as subjects of human research, they have pointed out that it is
manifestly unfair (and therefore unjust) to take advantage of such

populations in order to pursue benefits that those subjects likely will never
see while imposing burdens that the eventual beneficiaries will never
experience.

Fairness thus provides one standard for judging whether there is a
proportionate reason to accept negative side effects. The benefits of an
action might be quite significant and the burdens relatively minor, but the
action may still fail the test of proportionality precisely because the benefits
are distributed to one person or group and the burdens to another. Such an
action is unfair unless the person or group receiving all or most of the
burdens consents to do so, perhaps out of charity for others whom they wish
to benefit, as we see in the case of living organ donors.

As the Tuskegee case illustrates, the standard of fairness in accepting side
effects is especially important for the ethical conduct of human subjects
research. (Although this book does not focus on it, the norms of the Way of
Medicine clearly bear on human subjects research.) Fairness is important
for the ethical practice of clinical medicine as well. Physicians can unfairly
benefit some patients at the expense of others, can unfairly seek resources
for their patients at the expense of their colleagues’ patients, or can unfairly
privilege their own good over their patients’ good. Physicians who
begrudge the time they give to a patient because of prejudice, distaste, or
dislike for the patient are being unfair, even if they intend no harm.

Fairness does not prohibit physicians from privileging their patients in
certain ways. Physicians’ commitments to their patients release them from
some obligations toward others. In attending to their particular patients,
physicians do not attend to those who are not their patients. Indeed, medical
practitioners could genuinely care for patients only by privileging their
patients in this way. Therefore, this kind of privileging seems to meet the
standard of fairness even if, at a given moment, someone is being
disadvantaged by it—for example, when a physician sees regularly
scheduled patients before patients who arrive without appointments. This
kind of privileging seems consistent with the Golden Rule.

Vocation

As we have seen, individuals have good reasons to bring order into their
lives by making commitments that orient them toward some goods rather
than others. Because human goods are typically sought and obtained in
cooperation with other persons, an individual must make commitments to
particular persons. Because the goods cannot be sought all at once or all in
the same measure, the individual must give priority to some commitments
over others.²

The individual’s vocation names the overall shape of his life—the order
brought about by his most important commitments. As we have seen,
vocations also generate obligations that require further action. So, for
example, a person whose vocation includes a marriage commitment will
typically eventually have children, and when that happens his vocational
obligations expand to encompass care and concern not just for his spouse
but for his children also.

We have made use of this account of vocation to argue for patient authority
in healthcare decision-making. Patients have the authority to accept or
refuse proposed interventions because they are in the best position to judge
whether the benefits and burdens being offered to them are proportionate
for them in light of their particular vocational commitments. The patient’s
vocation provides the standard against which proportionality is judged.

We can see how vocation bears as much on our assessment of side effects as
it does on our assessment of what is chosen. Patients make healthcare
decisions with benefits and burdens in view, and typically the consequences
of their decisions ramify beyond the scope of health. On the one hand, a
patient may choose an intervention in hopes of staying alive to spend more
time with his family, but as a consequence of the intervention he may
experience discomfort, insomnia, and irritability that make it hard for him
to be present to his family, do his work, or pray. On the other hand, the
patient may choose to decline treatment to avoid the associated burdens,
knowing that, as a consequence, he is likely to cut short the time he has to
be with his family or engage in other worthy activities. Either decision
results in a range of negative side effects, and the patient must judge

whether the negative effects to be accepted are proportionate to the goods to
be pursued. Vocation provides the standard for that judgment.

DETERMINING WHAT IS INTENDED AND WHAT IS A SIDE EFFECT

Now we return to an overarching question: on what grounds do we
discriminate between what is intended and what is merely a side effect?

All action aims at some good. More precisely, all action aims at some state
of affairs in which one expects to realize a good. Consider the request for
antibiotics by Abe, whom we met in chapter 3. He did not wish merely to
possess antibiotics, nor even merely to ingest them. He aimed at a state of
affairs in which, the antibiotics having done their work, his health would be
restored. So we may say that Abe had a goal or end in mind, and that he
hoped to realize the basic good of health in achieving that goal.

To reach this end, of course, Abe had to avail himself of means to that end.
He needed a plan, as is true of most of our pursuits of ends. Abe wanted to
be healthy; in order to achieve that, he aimed first to take antibiotics; in
order to take antibiotics, he first had to obtain a prescription; in order to
obtain a prescription, he first had to see a physician; and so on. Put
differently, Abe saw a physician in order to receive a prescription, in order
to obtain antibiotics, in order to ingest the antibiotics, in order to restore his
health. In thinking about Abe and each step in this series of actions, we
could describe his thinking and his choosing in terms of his plan or proposal
for action.

Abe might have considered other proposals; indeed, his physician
encouraged him to do so. In the physician’s judgment, antibiotics were not a
sound means toward health; rest and a tincture of time would be more
conducive to health. But at the end of the day, Abe made a choice, adopting
one proposal rather than another. The proposal included the end sought—in
his case, that state of affairs in which his respiratory infection was healed—

and the means to be pursued toward that end. All of this made up Abe’s
proposal for action, and so all of it was part of Abe’s intention.

In contrast, whatever was not part of this proposal—not, that is, either the
end Abe sought or the means he chose to achieve that end—can be
described as a side effect; it was not part of Abe’s intention. Perhaps Abe
knew that antibiotics typically upset his stomach and gave him diarrhea. He
was not terribly happy about that fact, but he went about seeking and taking
the antibiotics anyway. He foresaw that he would feel queasy and have
diarrhea for several days, but neither of these consequences was part of his
proposal; neither was intended. Although foreseen (more on that below), an
upset stomach and diarrhea were neither his goals nor the means he chose to
achieve his goal. Falling outside the scope of his proposal, these bad
consequences were side effects only.

Even though they were side effects, Abe still bore responsibility for them.
He could have chosen a different plan, such as the one his physician
recommended, and avoided these side effects altogether. Insofar as Abe was
able to choose between different proposals for action, he was responsible
for what he accepted as side effects. This is why it was necessary to identify
standards—fairness and vocation—by which Abe and others could judge
whether there was a proportionate reason for him to accept a particular set
of side effects in a particular situation. If we supposed that Abe would in
fact benefit from antibiotics and that the digestive issues would not
seriously incapacitate him, from the point of vocation, taking antibiotics
seems reasonable. But insofar as Abe’s expectation of benefit decreased
(e.g., as his physician explained that his infection was probably caused by a
virus), and his expectation of burdens increased (e.g., if he learned that he
was prone to more problematic forms of antibiotics-associated diarrhea),
Abe’s reasons for accepting these side effects diminished. If they
diminished enough, Abe should not have chosen to take antibiotics, even if
his doctor was willing to prescribe them. In addition, the doctor in this case
had her own decisions to make and her own judgments about
proportionality. The doctor had to judge whether the health benefits to be
obtained by writing the prescription were proportionate to the side effects of
doing so, and she had to consider whether it was unfair to other patients to

contribute to antibiotic resistance in the community while pursuing only
minor expected benefits for her patient.

Let’s return to the question of what Abe intended and a matter of some
controversy among philosophers of human action. We have claimed that
Abe’s intention encompassed all that was included in his proposal or plan—
his end as well as all the means he adopted to bring about that end.³ This
claim is controversial insofar as it identifies what was intended from the
agent’s perspective or point of view. What did Abe seek to obtain, and what
means did he choose to bring that about? Abe could choose only by his own
lights, but many thinkers, who agree about the importance of intention and
the rule of double effect, think that the agent’s perspective is too subjective.
Motivated in part by some hard cases, they are inclined to argue that one
must take a more objective view and that, in some cases, doing so will lead
to different conclusions about what Abe chose and whether he chose rightly.

What hard cases do they have in mind, and how do those cases bear on how
we think about intention? The body of writing about intention is enormous,
but here we focus on a case famously presented by philosopher Philippa
Foot. Foot described a case involving cave explorers trapped by a landslide
that had left one of their number blocking the only way out of the cave.
Water in the cave was rising fast, and the only way to move the man and the
rocks that were pinning him was to use a single stick of dynamite to blow
open a hole through which the explorers could escape—all the explorers
except, of course, the one who was stuck, whom the explosion would kill.

Would it be homicide to blow open the hole? Would those who blew open
the hole necessarily intend the man’s death? By our account, as described
above, it does not seem that the explorers’ proposal included the man’s
death. Their end was to save their lives. The means they chose included
blowing open a hole in order to escape. On our account of their intention,
the explorers would not be guilty of intentionally killing the man stuck in
the hole. (Whether it would be permissible to accept his death as a side
effect is a separate question, which would clearly require a consideration of
fairness and vocation.⁴)

But many find this conclusion appalling. Surely one cannot blow a hole
open by setting off a stick of dynamite right next to a living human being
and not intend that person’s death! The action of setting off the dynamite
and causing the death of the trapped explorer seems, as philosophers say,
“too close.” Thus, on some theorists’ account, if the bad effect is too close
to the action, it should be considered part of what is intended, even if the
bad effect is not part of the agents’ proposal. The challenge in such
accounts is not only to distinguish that which is part of a person’s proposal
from that which is not, but also to discern whether bad effects are
sufficiently close to the action to be considered part of what is intended,
thus making the action unreasonable.

One of the authors of this book has addressed the problem of closeness at
great length elsewhere,⁵ and we do not propose to wade further into that
topic here. But we mention these different accounts of intention here
because they return in chapter 7 when we discuss some disputed questions
related to the beginning of life.

ARTICULATING THE RULE OF DOUBLE EFFECT

We are now in a position to compare our formulation of the rule of double
effect with the more common and somewhat more complicated
formulations.

Above we presented the rule as follows: sometimes an effect that one
should never intend can be accepted as a side effect as long as there are
proportionate reasons for doing so. This formulation is relatively simple,
and it leads to a relatively simple way of applying the rule: only intend (i.e.,
will or choose) the good, and only accept the bad side effects of an action
when there are proportionate reasons for doing so (with proportionality
judged against the standards of fairness and vocation).

A more traditional formulation of the rule is somewhat more complicated.
According to that formulation, one may accept the bad effects of an action

if the following four conditions are met:

1. The act is good in itself (sometimes stated as the act is not intrinsically
wrong).

2. The bad effect is not intended.

3. The good effect is not achieved by means of the bad effect.

4. There is proportionate reason for accepting the bad effect.⁶

We prefer our simpler formulation, because we believe it encompasses
these four conditions. Only intend the good encompasses conditions 1
through 3. An action that intends only the good is good in itself. Because,
on our account, one’s intention includes both the end one seeks and the
means one chooses to bring about that end, conditions 2 and 3 are
redundant and can be stated simply as never intend the bad (the logical
corollary of only intend the good). Finally, our formulation includes the
requirement of proportionality (condition 4).

RECOGNIZING THE CLINICAL IMPORTANCE OF THE RULE OF
DOUBLE EFFECT

We conclude this chapter by pointing to the pervasive role that the rule of
double effect plays in medicine and medical ethics. Physicians lean on the

rule of double effect in their everyday reasoning about whether the adverse
side effects (the language physicians have long used) of a treatment should
be accepted in light of the benefits that the treatment promises. Physicians
cannot possibly honor the ancient medical commitment to do no harm
except by either doing nothing, and so failing to be physicians, or by
deploying the rule of double effect—intending only the good to be brought
about by an intervention and accepting the bad side effects only when there
is proportionate reason to do so. Physicians thus tacitly deploy the rule of
double effect whether or not they explicitly embrace it or the Way of
Medicine. Therefore, we might say that those who critique the rule of
double effect find themselves critiquing their own everyday clinical
practices.

The rule plays a more visible and equally foundational role when we turn
from every-day, uncontroversial practices to ethically controversial
interventions. Without the rule, one cannot, in many cases, respect all
persons by not violating their goods—goods that moral absolutes protect—
and still act to preserve and restore the health of one’s patients. Application
of the rule of double effect is essential, for example, in showing how an
intervention to save the life of a pregnant woman need not violate the norm
against intentional killing, even when the intervention will result in the
death of an unborn human person. The rule is equally essential for
understanding the difference between the practices of withholding or
withdrawing medical treatment and the practices of assisted suicide and
euthanasia.

Finally, the rule of double effect plays a critical role in the question of
cooperation, a central question wherever physicians are pressured to act
against their conscience. Medical practitioners cooperate in unethical
practices whenever they do something that makes it easier for another
person to do something bad. For example, suppose a patient asks for a
referral to an unscrupulous pain physician because the patient intends to get
opioid medications in order to abuse them. If the practitioner intends to
make the bad action easier to take—that is, makes the referral so that the
patient will be able to abuse opioid medications—the practitioner formally
cooperates, and formal cooperation is always unethical; it is always wrong
to intend what is bad. But if the practitioner does not intend to make the bad

action easier, the physician only materially cooperates, and the question
then becomes, Is there a proportionate reason to accept the unintended bad
as a side effect? So put, the question of cooperation clearly requires
application of the rule of double effect.

CONCLUSION

The rule of double effect plays a pervasive and foundational role in the Way
of Medicine. The rule undergirds physicians’ routine practices of assessing
side effects, and it protects them from violating the moral commitments that
have guided physicians for centuries in the Way of Medicine. Therefore, we
encourage the reader to be wary of those who dismiss the rule because it
was first articulated formally in a religious community (Roman Catholic, to
be precise) or because intentions are often hard to judge from the vantage
point of a third party (they are indeed sometimes hard to judge, but that
does not make intentions less important) or because the rule seems to limit
the scope of a patient’s right to self-determination (it does, which is why
medicine requires the concept of authority).⁷ The profession of medicine
detaches from the rule of double effect to its peril.

CHAPTER SIX

Sexuality and Reproduction

The clinical terrain involving sexuality and reproduction includes an
expansive array of ethically controversial topics. With respect to sexuality,
these topics range from gender and sex transition to sexual performance to
the prevention of pregnancy. With respect to reproduction, they range from
genetic counseling and assisted reproductive technologies prior to
pregnancy to prenatal genetic diagnosis and abortion during pregnancy to
resuscitation of neonates and surgical sterilization after pregnancy.

In no other domain do the provider of services model (PSM) and the Way of
Medicine diverge more starkly. According to the Way of Medicine, the
constitutive end or purpose of medicine is the patient’s health. No one
should intentionally damage or destroy basic goods, and health and other
goods should be pursued by physicians only in ways that are fair to others
and that respect one’s vocational commitments. The domain of sexuality
and reproduction gives a clear picture of what the practice of medicine
looks like when it abandons these principles in favor of elevating patient
autonomy, choice, and subjective well-being.

To organize our approach to this domain, in this chapter we follow two of
our previous cases and add another in order to focus on three prominent
topics: contraception, assisted reproduction, and gender and sex transition.
In chapter 7 we turn to the issue of abortion.

Before going further, we note a looming difficulty. Clinical ethical
controversies regarding sexuality and reproduction disproportionately focus
on and have consequences for women. Moreover, the approach we advance,
in which medicine is oriented to health as one among several basic human

goods, leads to conclusions that many will see as contradicting women’s
“reproductive rights and freedoms” and women’s well-being more broadly
conceived. If that were not enough, both of us are men, a fact that to some
readers makes us unqualified to address questions that bear more heavily on
women. For all of these reasons, we proceed with caution, but we proceed
nonetheless.

THE PILL AND THE NEW MEDICINE

Whether the advent and subsequent dissemination of contraceptives should
be celebrated or lamented (a topic we address below), “the pill” profoundly
altered what patients expect of physicians and what physicians expect of
themselves. We noted earlier that as biomedical science has expanded, it
has made possible many uses of medical technology that are not obviously
directed toward preserving and restoring health. The paradigmatic example
of such interventions, and perhaps the most consequential for medical
ethics, is the contraceptive.

In 1979, roughly twenty years after the US Food and Drug Administration
(FDA) approved the first oral contraceptive,¹ Mark Siegler and Anne
Dudley Goldblatt wrote,

The oral contraceptive medication was the first prescription drug that was
(and is) in effect, a self-prescribed “treatment.” Patients—i.e., medical
consumers desiring elective medication—demanded that physicians
prescribe the contraceptive pill. Other popularly self-prescribed medications
soon followed . . . [and] came to be seen as appropriate solutions or
treatments for problems previously considered individual or social
concerns, but in any case not biological abnormalities or specific diseases.²

Siegler and Goldblatt, neither of whom had any moral objections to
contraceptives as such, nevertheless worried that the widespread
prescription of contraceptives by physicians established a problematic
pattern in which patients pursue and receive interventions that have
biological and physiological consequences—and so are sought from
physicians who are licensed under US law to “provide” such interventions
—and yet are not clearly required by physicians’ traditional orientation to
the health of their patients. They worried that this widespread pattern was
leading to the phenomenon of the “demanding patient” and was teaching
patients and physicians alike to think of the physician as a mere provider of
healthcare resources.

Public perceptions and expectations regarding physicians have continued to
shift in the directions Siegler and Goldblatt worried they would. As we
discuss below, prescribing contraceptives is not obviously congruent with
an orientation to the patient’s health, yet prescribing contraceptives has
come to be seen as obviously part of a physician’s task. To support this
shift, health, objectively defined, has steadily been displaced by a much
more expansive notion of women’s health (a version of well-being) that
includes sexual and reproductive autonomy and reliable family planning.
This shift leads physicians to detach from practicing medicine under the
Way of Medicine’s orientation to their patients’ health in favor of
“providing healthcare services” according to the wishes of their patients. In
the former, the physicians’ judgment is essential. In the latter, that judgment
is either irrelevant or an impediment to their patients’ achieving well-being.

There is a logical progression to these shifts:

1. People desire a state of affairs (e.g., temporary sterility) that doctors can
bring about.

2. The desired state of affairs is not obviously related to health.

3. The aims of medicine, therefore, are broadened, either by adding to
health other aims (e.g., reproductive autonomy) or by expanding the
definition of health (e.g., to well-being) so that it includes these additional
aims.

4. Physicians cannot, as a result, have the authority that comes with
expertise regarding the aims of medicine since they have no authority of
expertise regarding this expanded set of concerns (e.g., whether and when
women should be open to pregnancy).

5. Physicians should be nondirective in their counsel to patients, giving
accurate information but letting patients decide how and when their
physicians will cooperate to bring about the states of affairs that the patients
desire (whether sterility, pregnancy, or something else altogether).

These shifts in public and professional understandings put pressure on
physicians to either go along or leave the profession, and they underpin the
swing of the pendulum from paternalistic medicine to the patient-as-client
model undergirding the PSM. The pendulum received a decisive push when
family planning was incorporated into the domain of medicine.

CONTRACEPTIVES IN THE CLINICAL SETTING

Cindy Parker, the twenty-year-old undergraduate student we met in chapter
1, presents to the student health clinic to see a physician. The physician
asks, “What brings you to see me today?” She responds, “I just need a
prescription for birth control.”

In the context of the PSM, it is hard to see anything ethically interesting
about this interaction. Ms. Parker requests contraceptives, as the great
majority of American women do at some point in their lives. Indeed,
prescribing contraceptives is one of the most common and routine practices
of obstetrician-gynecologists, family physicians, and others who care for
women of child-bearing age.

The Provider of Services Model

According to the PSM, prescribing the pill to Ms. Parker is uncontroversial,
if not ethically obligatory. First, contraceptives meet the criteria of being
legal, technically feasible, and readily available in the present context. The
physician needs only to write a few words on a prescription pad, something
that physicians are eminently competent and qualified to do. Meeting these
criteria implies that the intervention (contraception) is among those options
that a physician must offer to a patient in order to duly respect the patient’s
autonomy. The physician might ask Ms. Parker questions and share
information with her about the actions and side effects of different
contraceptives in order to make sure her request is free and informed, but
after doing so the physician must honor Ms. Parker’s choice.

Notably, in the principlist framework favored by the PSM, the principle of
beneficence also moves the physician to prescribe the contraceptive, insofar
as only Ms. Parker is in a position to decide what is good for her—that is,
whether a contraceptive will contribute to her well-being or not. Only she is
in a position to consider the various states of affairs that she values, such as
finishing her degree and advancing in her career, as well as enjoying sexual
intimacy when that seems right to her. She may hope to have children one
day, but pregnancy now would substantially disrupt her life plan.
Contraceptive technology allows her to pursue her goals without the fear of
becoming pregnant.

To this basic structure of reasoning, PSM proponents may add other
considerations. They may note that contraceptives are relatively safe.

Although the PSM is often willing to set aside the health of the patient in
order to achieve other patient goals, to date most ethicists have supported
physicians who declined to provide interventions that threaten imminent
substantial bodily harm to the patient (some exceptions are addressed
below). So, for example, surgeons are supported in refusing operations that
will cause significant harm and have little prospect of restoring health.
Contraceptives, by contrast, do not seem to reach that threshold.
Contraception-associated risks of major harms such as blood clots and
stroke remain small. Moreover, pregnancy brings its own health-related
risks, so that a harms-reduction model appears to support using
contraceptives to minimize bad health outcomes downstream.

Then there is the question of justice. Access to effective contraception has
made it possible for millions of women like Ms. Parker to pursue vocational
pathways that early motherhood might foreclose. As such, many would
argue that Ms. Parker has a justice claim that the physician must respect.

Ultimately, only Ms. Parker is in a position to weigh all of the desired and
undesired consequences of using or not using contraceptives in order to
make an informed choice about whether a contraceptive is right for her. In
light of all this, it seems obvious under the PSM that the physician should
prescribe what Ms. Parker requests.

The Way of Medicine

On the Way of Medicine, this same case becomes problematic. Our
framework starts not with the question of whether prescribing
contraceptives is legal, feasible, and available but instead with the question
of whether prescribing a contraceptive is congruent with the physician’s
commitment to her patient’s health. The answer to that question is not
obvious in this most common of cases, insofar as being capable of
pregnancy is a sign of health for a woman of Ms. Parker’s age. Prescribing
a contraceptive thus fits awkwardly with a commitment to health, if it does
not indeed contradict that commitment.

We can imagine cases in which our framework might straightforwardly
affirm the prescription of drugs that in most cases are used as
contraceptives. For example, hormonal contraceptives are often prescribed
to treat medical conditions such as endometriosis or bleeding fibroids, or
even to restore healthy menstrual patterns. In such cases, the physician who
prescribes the drug seems to do so for the patient’s health. Temporary
sterility is foreseen as a side effect in such cases, but it need not be and
often is not intended, and there is often a proportionate reason to accept the
side effect.

In the usual case, however, as in Ms. Parker’s, physicians prescribe
contraceptives not to preserve and restore health but rather to make the
patient temporarily sterile. That action not only departs from the physician’s
commitment to patient health but also seems to contradict that commitment.
Pregnancy is a sign of health for a young woman who engages regularly in
sexual intercourse. Indeed, if Ms. Parker were to tell her physician that over
the previous three years, she and her boyfriend have had sex regularly
without using condoms or other contraceptives, the physician then would
have good reason to think that something is wrong with the health of Ms.
Parker or her boyfriend. So when a physician directly diminishes a patient’s
fertility—by prescribing a contraceptive or conducting a sterilization
procedure—she thereby directly diminishes her patient’s health.

Does this argument define health too narrowly? Contraceptives may
diminish one dimension of health, but what about the proper working of the
organism as a whole? How can the health of Ms. Parker on a contraceptive
be considered deficient relative to the health she would have if she were
thirty-six weeks pregnant, with swollen legs, elevated heart rate, and a
reduced capacity for exercise? Moreover, what about those risks of injuries
to health that pregnancy brings: bleeding, infections, a ruptured uterus, even
death? These questions have force, particularly when a woman has a
condition, such as a congenital heart defect, that puts her at markedly
elevated risk of harms to health during pregnancy. Within the framework
we propose, it is along such lines—orientation to a patient’s health—that a
physician should ask himself whether prescribing a contraceptive in a
particular case coheres with or contradicts his profession.

In this respect, the case of being called on to prescribe a contraceptive
might seem similar to other instances in which a physician seems to engage
negatively with one dimension of a patient’s health for the sake of others.
Thus, amputation of a limb removes a part of the organism for the sake of
the whole; surgery involves cutting into healthy tissue to get at the
unhealthy. Is the provision of a contraceptive similar to either of these
instances?

We think not. Effecting temporary sterility is at least a suppression of a
patient’s healthy functioning in a way that removal of a gangrenous limb is
not. Once a limb or organ is gangrenous, there is no state of health available
to the organism except one in which the diseased part is removed. That new
state—without the diseased part—is clearly a state of improved health
relative to the state in which the diseased part remains intact. A parallel
situation occurs when a dying patient is suffering terminal agitated
delirium; then “cutting off” the diseased state of consciousness using
sedatives may restore the only measure of health available to a person in
that condition—one clearly reduced relative to a healthy organism but
improved relative to that particular state of agitated delirium. We discuss
this further in chapter 9. Intentionally causing temporary sterility in a case
like Ms. Parker’s differs from these cases. Fertility is not like gangrene or
delirium; rather, causing temporary sterility in this case seems to involve
reducing the health of the whole for the sake of preserving some dimension
of health, or at least being hostile toward one dimension of health (that
dimension which makes reproduction possible) for the sake of other
dimensions.

Contracepting also differs from accepting the incidental damage to health
that inevitably occurs as a side effect of medical interventions. In
Hippocrates’ Oath and Asclepius’ Snake, Thomas Cavanaugh notes that
these “wounds of treatment” inevitably accompany all medical efforts to
restore order to a dis-ordered body, but the wounds are not intended.
Indeed, medical progress is measured in part by mitigating the wounds that
accompany medical interventions. In the case of contraception, however,
the physician intentionally suppresses healthy function as a means to some
other goal—even a health-related goal. Doing so seems to contradict the
physician’s professed and fundamental orientation to health and thus to be

an instance of what Cavanaugh calls “role-conflation” harm—harm that is
intended by the physician contrary to the demands of her profession.³

To summarize, prescribing contraceptives, at least in Ms. Parker’s
representative case, contradicts the physician’s commitment to the patient’s
health; contracepting is not, to put the point more strongly, medicine at all,
even if it has many of the trappings of medicine.

This verdict of the Way of Medicine is supported by reflection on the
requirements of practical reason. Practical reason converges with the Way
of Medicine in an argument against contraception that turns on the way that
using a contraceptive seems sometimes to involve hostility toward the child
who might otherwise come into existence as the fulfillment of sexual
intercourse. We argued in chapter 5 that one intends what one adopts in
one’s proposal for action, encompassing both the end one is pursuing and
the means one chooses to bring about that end. In contraception, one
anticipates an action—engaging in sexual intercourse—that could result in a
child as a consequence, and one wishes to prevent that consequence. So one
chooses a contraceptive as the means to prevent a child’s coming into
existence. This action seems contrary to the good of human life.

Some thinkers have gone as far as to argue that the choice to contracept is
structurally similar to the choice to abort. Contraception and abortion are
not the same wrongs, for there is no actual child in the case of
contraception, but a culture in which the great majority of people
intentionally prevent the existence of innumerable possible children would
not surprisingly extend its efforts to prevent children from being born by
also supporting the practice of abortion. Indeed, if children are expected to
follow from sexual intercourse only when their existence is wanted,
abortion becomes a critical backup strategy for dealing with unwanted
pregnancy. In the Supreme Court case Planned Parenthood vs. Casey, the
Court noted, “For two decades of economic and social developments,
people have organized intimate relationships and made choices that define
their views of themselves and their places in society, in reliance on the
availability of abortion in the event that contraception should fail.”⁴
Contraception turns out to be not so much a bulwark against abortion as a
gateway to it.⁵ Of course, if abortion is not morally problematic, this

suggestion will bring no disquiet. As we will show in chapter 7, however,
abortion itself gravely violates the good of human life.

ASSISTED REPRODUCTION

Abe Anderson remarried three years ago. His wife is now forty-three years
old and has not gotten pregnant despite their deep hopes to have children.
Mr. Anderson and his wife present to her ob/gyn asking for help in
achieving pregnancy

The Provider of Services Model

The PSM approach to this clinical moment can be summarized briefly, as
prior themes are repeated here. Respect for patient autonomy gives us a
reason to do what the Andersons ask. In contrast to Ms. Parker, Ms.
Anderson wants to be pregnant, so the state of pregnancy is good for her;
beneficence compels clinicians to pursue that goal. The law, particularly in
the United States, where regulations are few, permits quite a range of
technological interventions to bring about pregnancy, and many physicians
make those interventions available; physicians are also compelled by what
is customary and standard. Moreover, most assisted reproductive
technologies involve pharmaceuticals or surgical interventions that only
physicians are licensed to provide, so Ms. Anderson seems to have a justice
claim—that her physician should make available that which is legal, which
others readily obtain, and to which she has access only with a physician’s
help.

The principle of nonmaleficence seems to countervail these imperatives to
some extent, insofar as many assisted reproductive technologies pose risks
to the woman’s health. For example, in vitro fertilization (IVF) involves the

risks posed by ovarian hyperstimulation and surgical retrieval of oocytes.
As noted above, the state of pregnancy itself brings risks to health that tend
to increase with age. But unless these risks reach the threshold of directly
and imminently causing major bodily injury, physicians must defer to their
patients to weigh the risks and benefits, broadly construed, and make the
choice that is best for each individual patient—that is, the choice that
maximizes all of the goods, as she defines them, available to her.

Curiously, in the domain of sexual and reproductive healthcare, the PSM
leads us to treat the same state of affairs as good and to be sought for one
patient and as bad and to be avoided for another patient; the only difference
is whether the patient wants the state of affairs. Unlike the Way of
Medicine, which focuses consistently on objective human goods, the PSM
detaches from the question of whether a possible state of affairs brings
about genuine good, considering only whether that state of affairs is
wanted.

The Way of Medicine

Assisted reproduction becomes problematic on the Way of Medicine. The
physician again asks, in the first instance, what accommodating the
Andersons’ request has to do with her commitment to preserve and restore
Ms. Anderson’s health, but here the answer is a bit more complicated. If
Ms. Parker had regular sexual intercourse without contraceptive measures
from ages eighteen to twenty-one and did not become pregnant, that would
be evidence of something wrong with her health or the health of the man
with whom she had regular intercourse. Is the same not true for Ms.
Anderson?

Yes, it is, although Ms. Anderson’s case highlights that health is always
relative to a person’s sex and age. To state the obvious, no physician to our
knowledge would consider it a medical problem that Mr. Anderson has not
achieved pregnancy, because the health of men does not include child-
bearing capacity. Similarly, physicians would not at this time consider it a

medical problem that Ms. Anderson had not achieved pregnancy if Ms.
Anderson were eighty years old. The health of eighty-year-old women
simply does not include the capacity to bear children. Ms. Anderson, forty-
three years old and premenopausal, is at a point in life in which the capacity
for pregnancy is characteristically diminished relative to, say, that of a
twenty-three-year-old woman, but some healthy forty-three-year-old
women do become pregnant. Therefore, in the Way of Medicine, the fact
that Ms. Anderson has not become pregnant does give the physician a
reason to get involved—but in what manner, and why?

First, what is the physician’s goal in this case? The initial reaction might be,
“A baby, of course.” After all, the only reason Ms. Anderson wants to be
pregnant is that she wants a baby—presumably a baby that is genetically
hers and her husband’s. If the physician had a reliable way to bring about
pregnancies, but such pregnancies would inevitably end in spontaneous
abortion, Ms. Anderson would not be interested in the physician’s help. Yet
we have already said that health is the proper goal of medicine, and a baby
is not health, so although the physician might reasonably join the
Andersons in hoping that their sexual union will result in a baby’s being
conceived and born to them, the baby—however good and however
strongly desired by the Andersons—lies outside the proper scope of the
physician’s practice.

To give a parallel example, Ms. Anderson might suffer from minor arthritis
that many people would ignore but that keeps her from an activity that she
highly values—say, a form of dance to which she has devoted much of her
life. In such a case, as the physician attends to her arthritis, the physician
might join her in hoping that she will dance again and might readily
understand why this condition that others consider trivial concerns her so
much. Yet the physician’s goal is not dance but the health that makes dance
possible. Similarly, the physician’s aim with respect to Ms. Anderson’s
desire to have a child is the health that makes pregnancy and subsequent
childbirth possible.

Within the Way of Medicine’s approach to Ms. Anderson’s health, much
can be done. Physicians might seek to restore healthy patterns of ovulation,
sometimes through attention to nutrition and exercise and sometimes

through pharmacological interventions—including medications typically
used as contraceptives—such as exogenous hormones to replace or return to
normal levels those that are disrupted in one way or another. Physicians
might intervene via hysteroscopy or laparoscopic surgery to restore patency
to the woman’s fallopian tubes. In parallel, a physician might work to
improve any deficiencies in Mr. Anderson’s capacity to produce healthy
semen, including viable sperm; to achieve and sustain an erection; and to
reach ejaculation. All of these interventions might be reasonably carried out
on the Way of Medicine. These practices are standard for doctors who focus
on responding to infertility, and today a minority of such physicians
explicitly limit themselves to such practices. The latter include those who
put themselves forward as practitioners of NaPro Technology (natural
procreative technology).⁶ These physicians aim at health, hoping that such
health will be followed by pregnancy and childbirth, much as physicians
treating arthritis aim at health, hoping that such health will enable dancing
and other activities that display health.

As we have noted, the PSM is willing to circumvent health altogether in
order to produce a baby. Indeed, this willingness characterizes the entire
terrain of contemporary reproductive medicine in the United States, rightly
characterized by many as a kind of Wild West in which all things are
permitted. Physicians practicing in this area engage in artificial
insemination, in vitro fertilization, surrogacy, and other interventions
intended not to restore or preserve health but instead to use technology and
the remaining health-related capacities available to bring about the birth of
a wanted baby.

PSM-focused physicians will readily subject a woman to substantial risks to
her health if she is willing to undergo such risks in order to conceive a baby.
Gonadal hyperstimulation, for example, is known to cause ovarian
hyperstimulation syndrome, which brings an array of health problems and
in severe cases can be life-threatening.⁷ In the case of oocyte donors,
physicians subject the women to these risks while also treating them
instrumentally, as means to satisfy someone else’s desires. In gestational
surrogacy, physicians likewise treat the surrogate mothers as instruments to
satisfy another’s desires while they impose on the gestating woman all of
the risks that accompany pregnancy. The problem is not so much that

physicians tolerate side effects but that they tolerate side effects that
damage health in order to obtain states of affairs that have nothing to do
with the physicians’ commitment to this good. For these reasons, simply on
the basis of their constitutive commitment to the patients’ health, physicians
have reasons to avoid many assisted reproductive technologies.

As with contraception, the requirements of practical reason converge with
the Way of Medicine’s judgments on these types of interventions. Consider
the argument against those assisted reproductive technologies that separate
procreation from sexual intercourse. In brief, interventions such as IVF seek
to make a baby, exerting mastery over the raw materials of nature (gametes)
by using the technologies available to bring into being a desired product, in
this case, a living human being. As with other instances of making, the
product comes into existence at the pleasure of the makers, who accept the
product on the condition that it satisfies the desires that led them to engage
in the productive process. This feature of conditional acceptance is
manifested in the widespread practices of grading embryos, discarding
suboptimal embryos, selectively reducing embryos when an undesired
number have implanted, and cryopreserving, and perhaps donating to
science, “spare” embryos.

We develop the argument further in chapter 7, but here we note that human
beings at the embryonic stage are still human beings and therefore deserve
the basic respect that we accord to other human beings—especially the
respect of not being killed. Nor should we treat any human being, including
a human embryo, as merely a product or a thing to be brought into existence
at will, for doing so radically contradicts the demands of equality that are
central to the good of friendship even in its thinnest and most extended
sense.

In this sense, human beings are called to a kind of friendship with all other
human beings, in virtue of recognizing that all other human beings also are
fulfilled by basic human goods. This minimal friendship requires us to treat
all human beings with equal respect. Thicker forms of friendship build on
this basic form: even when children cannot yet reciprocate, parents act for
the good of their children as part of their good as parents. In the full

paradigmatic form of friendship, each friend treats the good of the other as
his own good.

IVF and related practices undermine the good of friendship by treating
another human being as a product—as something whose existence is
subject to one’s own will and mastery. These practices undermine
friendship even in its thinnest form, for no human being wishes to be
treated as a thing by another. Moreover, these practices are deeply at odds
with the form of friendship parents characteristically demonstrate toward
their children, in which they neither make their children the objects of their
will nor make their love contingent on the childrens’ satisfying the parents’
desires. One who accepts you only on the condition that you satisfy their
desires cannot be called your friend. With respect to conjugal intercourse,
the attitude appropriate to friendship is fully open to, if not also hopeful for,
that act’s finding its fullest realization in a new life over which the woman
and the man ultimately have little control.

Thus, in vitro fertilization, human cloning (if and when it arrives), and even
more limited technologies such as artificial insemination all seem morally
impermissible. Once again, we have only sketched the argument, which has
been presented elsewhere at greater length and with attention to objections.⁸
But our overall aim here has been to show that the Way of Medicine and the
requirements of practical reason converge in their conclusion that the Wild
West of assisted reproductive technology needs reform. At present, its
modes of practice are deeply at odds with the purposes of medicine and the
demands of practical reason.

SEX AND GENDER IN TRANSITION

Jules Baker, an otherwise healthy thirteen-year-old boy we haven’t
introduced you to before, suffers from gender dysphoria. He identifies as
female and wishes to take hormone-blocking supplements that will delay
puberty until he is old enough to undergo a full sexual transition: sexual

reassignment surgery to remove his male sex organs and provide female
facsimiles by means of plastic surgery.

The Provider of Services Model

The cases of Ms. Parker and Ms. Anderson make plain that physicians
practicing in accordance with the PSM will often set aside the norm of the
healthy organism if doing so accommodates the autonomous choices of
patients. So, under the PSM, whether the physician works to induce sterility
or enhance fertility, to get rid of pregnancy or produce it, often depends
entirely on the patient’s choice. Physicians respectfully refrain from
drawing conclusions about the signs of a “healthy” human organism until
they know what a particular human being wants with respect to his or her
body.

The case of Jules indicates how far this logic extends in contemporary
medicine. If the signs of health with respect to sexual intercourse and
pregnancy depend on the wishes of the patient, why not also the signs of
health with respect to secondary sex characteristics? If the goals of
medicine are rightly determined by the informed choices of autonomous
patients—by what patients determine is good for them—perhaps the form
of “healthy” secondary sex characteristics should also be determined by the
informed choices of patients—by what patients decide are the right
secondary sex characteristics for them.

We now see a burgeoning practice of what have come to be called gender
transition and gender-affirming services—the use of exogenous hormones
and surgical treatments to block puberty and to fashion, as closely as
possible, secondary sex characteristics that appear to match patients’
“gender identity” or “gender preference.”

Changing the secondary sex characteristics of people like Jules takes the
PSM’s rationale one step further, treating the patients’ sexual organs and
underlying sexual physiology as either a good to be preserved or a harm to

be remedied, strictly on the basis of the patient’s self-perception. In the
PSM framework, in the case of Jules, who does not want male secondary
sex characteristics, those characteristics are harms to him, which the
physician has an obligation to remedy insofar as possible. Might the case of
Jules present an opportunity to see the PSM’s inadequacies? If our language
and our framework of analysis lead us to think that we should block a
thirteen-year-old boy’s sexual maturation—often rendering the boy
permanently sterile in the process—perhaps we need a new language and a
new framework.

The Way of Medicine

The Way of Medicine starts with a claim that has been implicated in much
of our discussion thus far. Put simply, humans, like all other animals, are
organisms. Indeed, this fact makes it possible for us to recognize that bodily
health is a real human good rather than an ethereal aspiration.

A corollary claim immediately follows: our existence as human animals is
sexed. We are male or female organisms by virtue of having a root capacity
for reproductive function, even if that capacity is immature or damaged. As
with countless other species, the human reproductive function is performed
jointly by two organisms of opposite sexes; no individual human being
suffices for the performance of reproduction. The two sexes reflect root
capacities for the general structural and behavioral patterns involved in
human reproduction. In male humans, this capacity comprises the structures
necessary for the production of male gametes and the performance of the
male sex act, insemination. In females, the capacity comprises the structures
necessary for the production of oocytes and the performance of the female
sex act, reception of semen in a manner disposed to conception.

Some individuals, due to disorders of sex development, present genuine sex
ambiguity. For example, females with congenital adrenal hyperplasia can be
born with male-appearing external genitalia. To give another example,
disorders with respect to the production and metabolism of testosterone can

cause babies with male chromosomes (X, Y) to develop characteristically
female external genitalia. Some sex and gender theorists have made much
of these and other intersex cases in arguing that the simple binary of male
and female fails to do justice to the diversity of possible sexes. And of
course, opening up the number of “possible sexes” does a certain amount of
work in opening up the possibility of changing one’s secondary sex
characteristics, which is precisely Jules’s desire.⁹

Yet those who deny the sexual binary on the grounds of intersex cases
ignore the distinction between paradigm cases and cases that decline from
the paradigm. This distinction, recognized since Aristotle, applies to many
kinds, including many kinds within the natural order.¹⁰ Organisms, for
example, come in ones: that is part of what it is to be an organism in the
paradigm case. But the Hensel conjoined twins, possessing two arms and
two legs but also two heads between them, are neither precisely one nor
two.¹¹ This distinction between paradigm cases and cases that decline from
the paradigm is necessary to make sense of what physicians do when they
recognize congenital abnormalities, including ambiguous genitalia. Indeed,
the distinction is necessary to make sense of the concept of “intersex”—that
is, not clearly conforming to either the male or the female paradigm. In the
same way that conjoined twins do not refute the claim that organisms are
one, neither do instances of sex ambiguity refute the claim that human
organisms are either male or female.

The Way of Medicine, in its orientation to patients’ health, resists
inducements to interfere with, interrupt, or otherwise revise the healthy
development, maturation, and function of male and female sexual organs
and capacities. Note that the Way of Medicine’s resistance to such
interventions does not depend on conclusions about normative gender
expression, much less about normative sexual practices. Rather, its
resistance follows directly from its orientation to health as an objective
bodily good for and in human animals, male and female. Medicine operates
within the boundaries required by pursuit of this good.

That being said, those who seek to change a person’s sex not only
contradict medicine’s orientation to health but also always and necessarily
fail in what they attempt. Indeed, here the logic of the PSM leads to absurd

contradictions in which some justify changing secondary sex characteristics
by claiming that one’s phenotypic (or genetic) properties can be at odds
with one’s real sex—a feature of some disembodied reality to which only
the individual has access—while others justify such interventions by
claiming that there is no such thing as one’s real sex.

From these mutually incompatible claims, further contradictions follow. To
affirm who Jules is, we are told, physicians must reject Jules’s current form
and refashion his body to look very different from the body of Jules as he is.
Because gender is socially constructed—not dependent on biology and
anatomy—we are to change that biology and anatomy on which gender
does not depend. In order to get beyond the constraints of the sexual binary,
we are to reify it by seeking to produce secondary sex characteristics
determined by that binary. The contradictions in such reasoning would be
comical if they did not result in such tragic consequences for people like
Jules.

Moreover, changes to secondary sex characteristics fall far short of bringing
about a change in sex. The latter would make a male organism capable of
engaging in the female sex act, or vice versa. Sex change (“gender
transition”) interventions do nothing of the sort. Rather, they culminate in
surgeries to remove sexual organs—for example, a penis or a vagina—and
to refashion simulacra of the organs that members of the opposite sex
characteristically possess. But one can neither make a vagina by creating an
orifice nor make a penis by creating something that becomes enlarged on
stimulation. One could genuinely make a penis or a vagina only by re-
creating the entire biological economy of the human being, whose
development as a male or female began at conception.

Within that primordially sexed biological economy, the functions of the
penis and the vagina are discernible in relation to the sexual act to which
they contribute, which culminates when sperm are deposited in the vagina,
where these sperm are capable of processing toward and penetrating the
oocyte. Moreover, the penis and the vagina are linked intrinsically not only
forward to these functions that they might eventually perform but also
backward to processes, such as the production of gametes (all oocytes are
produced in utero), which began many years before sexual intercourse is

even possible. The biological development of male and female human
organisms involves the working out through time of capacities that were
present at the beginning.

Physicians can transplant a penis to a male or fashion a vagina in a female
so that the organ becomes truly part of the person’s biological life.¹² The
situation is similar to that of a heart transplant. The organ is integrated into
an organism whose biological matrix is fundamentally oriented toward that
organ’s presence and for whom the absence of the organ represents a
significant diminishment of health. Redressing such diminishments is
entirely within the scope of medicine’s mandate, even if the redress does
not fully restore the diminished function. For example, if a transplanted
penis allows normal urination but does not result in full erectile function, it
still restores a dimension of health. No surgery, however, can integrate a
male sex organ into the biological life of a being whose root capacities are
female (and vice versa).¹³

Unfortunately, the PSM seems increasingly committed to ignoring the
antinomies and contradictions posed by granting patients the gender
transition or gender affirmation interventions they seek. In doing so, the
PSM makes patients’ wishes and choices determinative of both sex and the
purpose of medicine. Some physicians today use exogenous hormones and
surgical interventions to bring about changes in patients like Jules. These
changes, were they brought about in the absence of the patient’s asking that
they be done (or, in pediatric patients like Jules, the patient’s parent asking
that they be done), would be considered profound mutilations of a healthy
body. So the contradictions in the PSM lead to tragic consequences, as these
interventions irreversibly damage the health of the patient.¹⁴ Yet, because
these interventions are patient-chosen, the PSM and its surrounding social
and legal culture not only permit physicians to conduct these interventions
but also increasingly charge physicians who refuse to participate in them
with abandoning their professional obligations to “put the patient first.”¹⁵

The Way of Medicine cannot but dissent from these increasingly common
judgments. Because the Way takes its bearings from the health of the
patient as a member of the human species, the Way of Medicine sees that
every surgical attempt to change an individual’s sex damages or destroys

some secondary sex characteristic that otherwise displays health and is
necessary for reproductive function, itself a constitutive dimension of
human health. This judgment of the Way of Medicine is only strengthened
by the requirements of practical reason, which add a corollary concern:
since sexual capacities make possible the one-flesh union of marriage,
interventions that damage or destroy those capacities also prevent the
realization of the basic good of marriage.

Thus, the Way of Medicine cannot countenance doing to Jules what he asks,
not because of bigotry or phobia but because, in solidarity with patients like
Jules, medical practitioners should act only in ways that are congruent with
the patient’s health and only in ways that are open to other basic goods,
including marriage and child-bearing. When a young woman with anorexia
sees herself as overweight, she manifests a disorder of perception. The good
physician shows no disrespect to the patient when she refuses to facilitate
further weight loss through surgery or medications. Rather, such refusals
are part and parcel of the physician’s commitment as a physician to care for
the patient. Similarly, Jules deserves our care and attention, but his problem
is not the presence of male secondary sex characteristics. Rather, he suffers
a disorder of perception regarding his nature as a human being, one who is
irrevocably and irreducibly male. The physical harm of bodily mutilation
should not compound the harms of that illusory perception.

To our minds, the willingness of contemporary medicine and society to
embrace such solutions manifests one of the fullest culminations to date of
the PSM to abandon concern for objective goods, to treat medicine as if it
were merely technique, and to put medical technologies in service of
autonomous desire. That culmination is continuous with the PSM’s
approach to contraception, assisted reproduction, and many other questions
surrounding sexuality and reproduction that we cannot address here. It’s no
surprise, then, that our treatment of these issues runs radically counter to
current medical orthodoxy.

Nevertheless, the Way of Medicine’s approach to these issues preserves the
possibility of medicine’s being a profession and of medical professionals’
being more than mere functionaries. The Way of Medicine also—as we
show in the next chapter, on abortion—acknowledges the moral demands

that a common humanity places on all of us, physicians and nonphysicians
alike.

CHAPTER SEVEN

Abortion and Unborn Human Life

Let’s return to the story of Cindy Parker.

Cindy received a prescription for birth control pills and took the pills
consistently until she broke up with her boyfriend. She was not sure when or
if she might have sex again, and one of the nurses at the student health
clinic had told her that if she had unprotected sex, she could buy emergency
contraception at the pharmacy without a prescription. Three months later
she did have sex again, and the following morning she purchased and took
emergency contraception pills. Three weeks after that, she returned to
student health, having noticed that she had missed her period. A pregnancy
test confirmed that she was pregnant. With tears in her eyes but
determination, she asked, “Where can I get an abortion?”

No issue in medical ethics is more consequential and politically divisive
than abortion, and though the legal and ethical lines have been clearly
drawn for decades, political leaders, medical ethicists, clinicians, and the
public alike continue to contest those lines, pushing for or against abortion
restrictions.

Our goal here is not so much to trace out all of the arguments for or against
abortion as to show the differences it makes if we consider Cindy’s request
for an abortion within the framework of the provider of services model
(PSM) versus the Way of Medicine.

THE PROVIDER OF SERVICES MODEL

The PSM approaches a request for abortion more or less as it does a request
for contraception, assisted reproduction, or gender transition. To start, the
fact that abortion is constitutionally protected and is endorsed by the
American College of Obstetricians and Gynecologists (ACOG) as an
essential healthcare service gives Ms. Parker’s request the force of law and
custom.¹ In addition, autonomy again looms large in the ubiquitous
language of choice, while beneficence again asks us to consider all of the
different outcomes that Ms. Parker might have valued, with deference to
Ms. Parker to decide whether abortion was the choice that would bring
about the greatest good for her. The condition of nonmaleficence was
satisfied in that early abortion is safe, arguably carrying less risk to Ms.
Parker’s health than continuing her pregnancy to term. And, once more,
justice asked us to consider whether it was fair for Ms. Parker to be forced
to carry to term a pregnancy that she did not want.

The language of justice has become particularly prominent among those
who advocate for legal abortion. Medical students and
obstetriciangynecology residents today often receive training in
“reproductive justice,” a concept that makes access to the full range of
family planning options an essential part of broader social justice for
women and girls. If Ms. Parker was to have the same prospects that she
would otherwise have had if she were male, she could not be asked to
shoulder consequences that did not fall on the man with whom she had sex.
Unlike him, Ms. Parker would have her life plans radically disrupted if she
did not have access to abortion.

So while the PSM might acknowledge genuine moral concerns regarding
abortion, it will consistently bracket them off as a matter of personal values
that intrude on the clinician’s professional obligation to accommodate, at
least by referral, the patient’s request for abortion. As long as Ms. Parker
was making an apparently free and informed choice of the healthcare

service she believed was best for her, her physician had to either perform
the abortion or direct Ms. Parker to someone who would.

THE WAY OF MEDICINE

The question of abortion is dramatically recast in the Way of Medicine.
Right up front, the Way of Medicine has us ask: what does abortion have to
do with the physician’s commitment to preserve and restore Ms. Parker’s
health? There are cases—for example, of severe preeclampsia or significant
heart conditions—in which the condition of continued pregnancy gravely
threatens the woman’s health, and we return to such cases below. But in the
great majority of cases, as in Ms. Parker’s, abortion is sought not for the
sake of health but for the sake of not having a baby. Abortion is a means of
preserving current and future possibilities for the woman that appear to be
threatened by carrying the pregnancy to term. That abortion concerns
choice, not health, is shown by the fact that a physician will treat two
otherwise identical patients differently based simply on whether their
pregnancies are wanted. With one patient, the physician will celebrate the
fact that she has achieved pregnancy and even promise to use all manner of
medical resources to see that her pregnancy continues to term. With the
other, the physician will perform or refer the patient for an abortion.

So far, then, in the Way of Medicine, physicians have good reason to
decline to participate in elective abortions, quite apart from the question of
what abortions do to the fetuses. In Ms. Parker’s case, the physician might
decline her request simply because his commitment to her as a physician
does not include bringing about a state of affairs in which she is no longer
pregnant.

When the life and health of the fetus are taken into account, however, the
physician’s refusal becomes imperative. From the time that the Hippocratic
Oath was formulated until shifts in some quarters starting in the 1960s,
medical oaths and codes in the West consistently condemned elective
abortion as contradicting physicians’ constitutive professional commitment

to never intentionally damage or destroy the health and life of patients. The
Hippocratic Oath stated, “I will not give to a woman an abortive remedy.”²
The “Hippocratic Oath Insofar as a Christian May Swear It,” which had
much wider circulation in the early centuries of the Christian era, expanded
this prohibition by stating, “I will not give treatment to women to cause
abortion, treatment neither from above nor from below.”³ The World
Medical Association’s 1948 Declaration of Geneva included the promise “I
will maintain the utmost respect for human life from the time of conception,
even under threat.”⁴

Notably, in 1983 the words “from the time of conception, even under
threat” were revised to “from its beginning, even under threat,” and in 2005
these words were removed from the Declaration of Geneva altogether.
These revisions were mirrored by changes in the codes of other professional
associations,⁵ and they reflect the fact that abortion was legalized in many
countries in the later decades of the twentieth century. They also reflect,
however, growing disputes about what the fetus is and whether respect for
human life really rules out abortion.

Surely a fetus is not a human being, some have objected, but instead only a
clump of cells. Or, even if the fetus is a human being, surely we do not owe
to it the same kinds of treatment we owe to the human beings reading and
writing this book. Moreover, what about the hard cases, in which a
woman’s life is in significant jeopardy? What authority do physicians, much
less the state, have to tell women they should not be free to make such
personal, indeed private, choices? We look at each question on the Way of
Medicine.

ANIMAL ORGANISMS

Throughout this book we have presupposed that we are all animal
organisms of a certain sort: human beings. The practice of medicine is
founded on this truth. The vocation of the healing profession starts with a

recognition that, as animal organisms, humans are susceptible to illness,
disability, decline, and death. We would not need medicine if we were only
disembodied souls or minds.

For complicated historical and philosophical reasons, however, modern
human beings have come to think and talk about themselves as if they were
souls or minds who happen to possess, for a time, a living body. Moderns
are accustomed to say, for just one example, that a person suffering
dementia is “not there anymore.” In part, this way of talking reflects the
cultural elevation of humans’ singular capacity for thinking and choosing—
that mindedness that seems to distinguish humans from the other animals.

Notwithstanding its popularity, this form of dualism is misguided. Pay
attention to your direct experience. Right now, as you read these words, you
are engaged in a sensory act, making use of your eyes and your hands, and
you are oriented in space toward the physical realities of words on a page
(paper or electronic); perhaps you are listening with your ears to sound
vibrations in the air as the recorded book is read to you. These acts are
those of a bodily being, specifically the organism who is sitting, reclining,
or walking (with earbuds) here and now. But you are also following an
argument, a train of thought, that makes use of abstract terms such as
“organism” and “abstract” and “thought.” These acts are those of a minded
being, a being capable of intellection. You are both of those beings, as
evidenced by your use of the word “I”: “I am seeing these words on the
page, and I am understanding them.” Thus, the minded being you are is the
same being as your physical, bodily being. One and the same being reads
and understands, sees and cognizes, moves and abstracts. You are that
human being, that living organism.

THE BEGINNING OF THE HUMAN BEING

If we accept the discussion so far as true, you came into existence whenever
the living organism reading this book came into existence. You were not
preceded by another living human organism, as might be possible if you

were a mind (or even a brain); rather, your existence commenced with the
existence of the human animal reading or listening to this book right now.

When did you begin? The answer, if you are not an identical twin or a
human clone, is simple: you began at fertilization, when a human sperm
penetrated an oocyte and both sperm and oocyte ceased to exist, giving rise
instead to a single-celled zygote. This zygote was itself a single, whole,
individual member of the species Homo sapiens, genetically distinct from
its parents and possessed of a developmental program by which it was able
to execute its own growth and development to the next stages of human
existence: the embryonic stage, then the fetal stage, then the infant stage,
and so on.

The best evidence for this claim comes directly from the science of
embryology and the authority of those who study human development and
the development of other organisms, such as mice. Consider the following
representative passage from K. L. Moore, T.V.N. Persaud, and Mark G.
Torchia’s textbook The Developing Human: Clinically Oriented
Embryology:

Human development begins at fertilization when a sperm fuses with an
oocyte to form a single cell, the zygote. This highly specialized, totipotent
cell (capable of giving rise to any cell type) marks the beginning of each of
us as a unique individual. The zygote, just visible to the unaided eye,
contains chromosomes and genes that are derived from the mother and
father. The zygote divides many times and becomes progressively
transformed into a multicellular human being through cell division,
migration, growth, and differentiation.⁶

Two primary arguments are made against the claim that a human organism
comes into existence at fertilization, but neither argument can be sustained.
First, some claim that because the early embryo is capable of twinning, it
therefore cannot be considered one individual organism. What shall we
make of this? Does the possibility of some one thing becoming two mean

that it once was not one thing? No one who has ever snapped a stick in half
could believe that. Nor, in the domain of living things, are microbiologists
tempted to believe that amoebae, which reproduce precisely by splitting,
were not individual organisms prior to splitting. Similarly, the phenomenon
of twinning does not suggest that the zygote or embryo was not a human
organism prior to twinning. Rather, it indicates that some human beings
came to exist later than fertilization—namely, when their embryo divided,
resulting in two embryos where once there was only one.

The second argument holds that the zygote or early embryo does not have
sufficient unity, within itself, to be considered a living whole. This line of
argument sees the early embryo as merely an aggregate (a “clump”) of
cells. Several problems arise with this claim. What could cause this mere
aggregate to become one thing? Indeed, the transition of numerous cells
into a single organism several days later than fertilization must be seen as
an extremely implausible, inexplicable event. Moreover, embryologists find
an enormous amount of activity, much of it coordinated, among the various
parts of the developing embryo, activity oriented toward ensuring the
embryo’s survival and growth. Nor is this coordinated activity the same in
all cells. Rather, embryologists observe division of labor among the cells of
even the very early embryo, and from the first cell division the roles of
some cells can be distinguished from the roles of others. That is, the embryo
does not appear to biologists as a mere clump or aggregate of
undifferentiated cells.⁷

The two claims just made—that humans are animal organisms and that
human organisms begin at fertilization—concern only the way things are.
They are not yet claims about ethics, about how we ought to act in light of
the way things are. Yet we have said enough to demonstrate a foundational
fact: abortions destroy human lives, where “human lives” means precisely
the lives of actual living human beings. If medicine is committed to the
health of human beings, this fact is of the greatest significance. It leads
directly to the ethical claim that medical practitioners should not perform or
facilitate abortions.

FULL MORAL WORTH AND RESPECT

Our discussion should also appeal to the full resources of practical reason
and its requirements. In addressing abortion, we are concerned with
whether killing certain human beings—namely, the unborn—is morally
permissible. Could it be that as a class the unborn are excluded from the
moral protection owed to other human beings? Three brief arguments can
respond to this question; all have been offered in expanded form
elsewhere.⁸

First, the basic human goods, including the goods of health and life, are not
to be damaged or destroyed in unborn human beings any more than in born
human beings. Recall our claim about basic goods: as intrinsically good,
they give us reasons to act, and intending their damage or destruction can
never be reasonable. Therefore, abortion, when it involves intentionally
destroying the life of an unborn human being, is always wrong, ruled out by
the same principle that governs other moral absolutes. (We address below
whether abortion could be something other than intentional killing.)

Next, because the basic goods of human beings are good for all,
intentionally killing the unborn is unfair. As the second general requirement
of practical reason, fairness was formulated with the awareness that all
human beings benefit from realization of the basic goods. Full
reasonableness requires, then, that we not consider the goods to be less
important, or less good, in some persons than they are in others (including
ourselves). Nor should we, in our pursuit of particular instances of these
goods, prioritize some and neglect others on the basis of arbitrary or
contingent motivations. Both of these patterns violate the Golden Rule,
doing to others what we would not have them do to us.

The proponent of elective abortion who acknowledges the humanity of the
unborn—who is not so self-deceived as to think of unborn human beings as
mere clumps of cells—is proposing to treat the good of life and health as of
lesser importance in some human beings, the unborn, than in others, and to
do so on the grounds that the life of the unborn is inconvenient, unwanted,

small, or an obstacle to a woman’s authentic development. None of the
grounds for sacrificing the lives of the unborn to privilege the lives of the
born seem to us any more cogent than the grounds for privileging white
lives over black, male over female, or native-born over immigrant. Fairness
thus forbids us to exclude the unborn from the class of human beings who
have the right not to be killed.

Finally, the right not to be killed intentionally is reasonably considered a
basic or absolute right. We can distinguish between rights and protections
we possess that are based on our particular contingent and sometimes
changing status, condition, or circumstances, and rights we think of as
absolute. The former include rights to vote, to have one’s work graded on
time, to be given a share in the benefits paid into in a pension system, and
so on. The latter include rights not to be enslaved, raped, tortured, or killed.

The second set of rights are thought to be held always and equally by all
who hold them, whomever that class includes. These rights should thus be
predicated on some truth that is likewise not passing and is true equally of
all who hold such rights and protections. That truth is their common
humanity; being human is the characteristic that all beings who have such
rights possess always and possess equally with all others who have those
same rights. If that is true, the rights not to be enslaved, raped, tortured, or
killed should be respected equally and always, with regard to every human
being, including all unborn human beings, who are no less human than they
will be once they are gestated and born.

These three arguments lead to the conclusion that what is true for medical
professionals is true for all: no one should ever intentionally damage or
destroy the life and health of an unborn human being. Abortion, understood
as the intentional killing of an unborn human being, is always and
everywhere morally impermissible.

ABORTION AND PRIVACY

These arguments also make clear that abortion is not merely a private
matter. The last recourse of those who would defend abortion is to claim
that arguments against it are a matter of personal, often religious, beliefs,
not public or professional concern. This claim is almost never argued, but it
has a kind of axiomatic quality in contemporary culture, characterized as
that culture is by its emphasis on what philosopher Charles Taylor calls “the
ethics of authenticity”—the notion that what is most important in life is for
each person to become the self that that person authentically chooses to
become, based on each individual’s own lights and without the censure or
imposition of external standards. This culture gives rise to the PSM.

The key premises that we have drawn upon to assess the practice of
abortion, however—that human beings begin at fertilization and that all
human beings have the right to not be killed at will—are neither esoteric
nor a matter of religious revelation. Rather, these are claims of human
reason that are accessible to all. The first is a claim of science, the second a
claim of the moral law known by practical reason (natural law, the Tao).
That moral law makes it possible for the public to recognize and defend
human rights and to evaluate particular practices, as well as explicit policies
and laws, as to whether they are just or unjust.⁹

Abortion is a public matter in a further crucial sense. When medical
practitioners exclude from the scope of their concern the lives and health of
some human beings, that damages the practitioners’ publicly expressed
commitment to patients’ health. Similarly, when a polity excludes from the
scope of its legal concern the lives of some human beings within its legal
boundaries, that damages any publicly expressed commitment to justice and
equality. These commitments are the foundations of the medical and
political communities, respectively; to damage them is to damage public
trust in these communities. The widespread permission, acceptance, and
practice of abortion are thus public wrongs in the sense that they erode the
fabric of a public, whether that public is the profession of medicine or a
political state pursuing justice.

ABORTION AND INTENTION

We argued in the previous section that abortion, insofar as it involves
intentional killing, is morally wrong. But must abortion always involve
intentional killing? In chapter 5 we explained that it can be permissible to
allow a bad effect if that effect is not intended, provided that proportionate
reason exists for allowing it. This claim is essential for thinking about
several issues surrounding abortion.

In what follows, we briefly address a famous attempt by Judith Jarvis
Thomson to justify abortion by arguing that it need not involve intentional
killing. We argue that in most cases abortion does involve intentional killing
and that abortion for the sorts of reasons Thomson envisaged would be
wrongful even if the death of the unborn were not intended.

We then turn to discuss vital conflict cases, those in which one or both of
the lives of the mother and child are at mortal risk and in which one or both
will surely die unless a medical intervention is performed that results in the
loss of the unborn human being’s life.¹⁰ We look first at some cases in
which natural law theorists exhibit wide agreement, then consider cases in
which the judgment that the child’s death is a side effect remains
controverted.

THOMSON’S VIOLINIST

Philosopher Judith Jarvis Thomson has advanced perhaps the most famous
argument in defense of abortion.¹¹ Thomson begins by noting that much of
the debate surrounding abortion concerns whether the unborn human being
is a person. Those who oppose abortion, she writes, typically “spend most
of their time establishing that the fetus is a person, and hardly any time
explaining the step from there to the impermissibility of abortion.”¹²
Meanwhile, “those who defend abortion rely on the premise that the fetus is
not a person, but only a bit of tissue that will become a person at birth.”¹³ In
contrast, for the purposes of her argument, Thomson grants that the fetus is

a person, then asks whether abortion is indeed impermissible on that
assumption. This is one of the great innovations of her article, and one
reason it has gained such acclaim.

At this point, readers might note that we spent time not on the question of
personhood but rather on the question of whether the fetus is a human being
(a question elided in Thomson’s contrast of “person” with “bit of tissue”).
That the fetus is a human being we take to be a matter of settled science, but
one that also can be defended philosophically. Pro-choice thinkers such as
Peter Singer agree with us on this point, conceding that it is obscurantist to
deny that the fetus is a human being (What else would it be?). Unlike
Singer, however, we hold that it is wrong to intend the death of any human
being, whereas Singer and many others hold that those human beings who
do not possess certain qualities—the qualities of personhood—may be
killed justifiably.

Note, then, that with respect to bioethics, and particularly the question of
abortion, the language of personhood is typically invoked in order to
distinguish which, among all human beings, are those who do not deserve
(because they are not persons) the respect we generally owe to other human
beings, including the respect of not killing them. Our argument, then, unlike
those Thomson was aware of, does not start with the idea of “person” but,
in a sense, ends with it, for it follows from our conclusion that embryos and
fetuses are persons, meaning beings whose lives should not be intentionally
damaged or destroyed.

Thomson presents an argument for abortion that concedes this claim—that
fetuses, as human beings, should not be killed intentionally. To do so, she
presents the reader with the following scenario: You wake up to find you
have been abducted by the Society of Music Lovers and medically attached
to a famous violinist who is unconscious and ill. He needs the use of your
kidneys for nine months to survive his disease; if you detach yourself from
him, he will certainly die.

Thomson believes that the average reader will intuit that it would still be
permissible to detach yourself, and in the situation as described, we agree.
Thomson’s scenario is one in which the rule of double effect applies. Must
you, by detaching yourself, intend the death of the violinist? It seems not.

Rather, you might reasonably intend to avoid the burdens of attachment. Is
detaching yourself unfair? Not necessarily. In Thomson’s scenario, the
violinist has no real moral claim on you—you were abducted, after all—and
so it does not seem unfair for you to detach yourself, thus avoiding a nine-
month involuntary confinement forced on you by someone with no
connection to you.

But the great majority of elective abortions do not resemble this situation at
all. Like Ms. Parker, most women who seek abortions do so because they
do not want, or do not feel ready, to be mothers. However understandable
these desires are, in such cases the woman’s intention clearly includes the
death, not merely the “disconnection,” of the fetus, as the fetus must die in
order to prevent it from developing into a baby to whom the woman is the
mother. Indeed, while Thomson believes that her argument supports only
disconnection from (or, more realistically, expulsion of) the fetus, others
have argued that the constitutional right to abortion in the United States
entails a right to the death of the fetus lest the right to abortion be whittled
away by improvements in technology that make it possible to sustain
fetuses outside the womb at earlier and earlier stages of pregnancy or the
right be forfeited in cases of botched abortions that produce live births.¹⁴

Suppose, however, that some abortions are not like this. Imagine a woman
who would, if it were possible, readily permit her fetus to be removed to an
external form of life support and seeks detachment merely to avoid the
burdens of providing the fetus further “womb room” or sustenance. In such
a case, however uncommon, detaching the fetus would not involve
intentional killing, and the death of the unborn child would be a side effect.
Could such an abortion be morally permissible?

Not, we suggest, in the kinds of cases Thomson has in mind. Note first the
differences in the kind of relationship the reader has to the violinist
compared with the relationship Ms. Parker has to the fetus inside her. In the
former it may make sense to talk only of “the woman” and “the violinist,”
but in the latter it also makes sense to talk of “the mother” and “her child.”
The mother-child relationship is quite unlike the relationship between the
reader and the violinist in Thomson’s example, even when the mother did
not desire the relationship and even, as in the tragic cases of sexual

violence, when the relationship has been forced on her through another
person’s criminal actions. We are animal organisms, and mother and child
share a real biological relationship; because those biological beings are also
persons, the relationship is also personal, even if it is not desired.

We recognize that this claim will strike some as extreme, even offensive,
and we readily concede that a woman who seeks an abortion after suffering
sexual violence is less blameworthy than one who seeks an abortion after
sexual intercourse in which she freely engaged. We also concede that when
abortion is chosen to end a pregnancy that follows consensual sex, the man
often bears as much responsibility for the abortion as the woman—and, in
some cases, more.

The point here is not to assign blame but to clarify that, contrary to what
Thomson’s hypothetical would suggest, biological relationships can create
obligations, even if those obligations have not been accepted voluntarily. If
a young baby turns up on a man’s doorstep and he realizes the baby is his
biological daughter—perhaps the man had had a one-night stand and the
mother has abandoned the baby—biological paternity and the child’s
vulnerability create a real obligation to provide assistance to the baby, one
extending well beyond nine months. If the man knows that his biological
daughter will surely die without the food and shelter he is able to provide, it
seems to us profoundly unjust for him to refuse. The same would hold true
if an elderly man showed up on the doorstep of a young woman and
identified himself as her father, perhaps separated from her years before by
war or another circumstance for which he was not responsible. Children
never choose their biological parents, and yet it seems that children
nevertheless have obligations to their parents that they do not have to
others. Biological relations matter morally, even though they are not
chosen. Indeed, if Thomson’s violinist scenario were changed only a little—
if, say, the reader learns that the violinist is the woman’s long-lost child or
long-lost sibling, we doubt that the reader’s intuitions would be so solidly in
favor of her detaching from him; indeed, they might become solidly in
favor of the opposite.

In a moment, we will consider cases that differ further from Thomson’s
example because in them the mother’s life is in danger. But we conclude

here that, apart from such cases, it is typically unjust because unfair to
refuse life-sustaining aid to one who is closely related to us, particularly
when we can provide such aid and others cannot; and this unfairness is
particularly at odds with a mother’s unchosen vocational responsibilities. If
we would help our child in the doorstep scenario or in the violinist scenario
but not in the abortion scenario, it seems that our refusal to help in the
abortion case is unfair—motivated by an unreasonable prejudice against the
unborn. Thomson’s article, then, does not in fact grant the personhood of
the fetus, for it fails to treat the unborn with the respect we accord to all
those whose deaths we would neither intend nor accept as a side effect
without proportionate reason.

DOUBLE EFFECT AND LIFE-SAVING ABORTION

Having gone so far to critique the vast majority of abortions, we here argue
that in rare cases in which a mother’s life and health are gravely threatened,
medical practitioners sometimes can reasonably intervene to preserve the
mother’s life even when their intervention will inevitably cause the death of
the unborn child as a side effect. Such interventions, as we explain, neither
contradict a physician’s commitment to the patient’s health nor are they
ruled out by practical reason.

One paradigmatic such case concerns a pregnant woman with a cancerous
uterus, whose cancer must be addressed before delivery or the woman will
die and the child also will die. Is it permissible to perform a hysterectomy
on the woman, removing the cancerous uterus and with it the unborn, pre-
viable child, even though this inevitably will result in the child’s death? The
rule of double effect indicates that the answer is yes: the end of the surgery
is preserving the mother’s life; the means is the removal of her diseased
uterus. The bad effect, which it would be immoral to intend, is the death of
the unborn human being. Is there a proportionately good reason to accept
that effect? In this case, yes, clearly: both mother and child will die if the
operation is not performed. Thus no one is being privileged, much less
arbitrarily privileged, over another. The mother’s life is not judged more

important than the child’s; rather, her life is the only life that can be saved.
In this case, the Way of Medicine would approve of the hysterectomy.

What if the life of the mother could be preserved, or that of the child, but
not both? Some argue that the mother’s life should be preserved over the
child’s because the mother is the physician’s primary patient. To us this
conclusion does not seem obvious. A physician charged with caring for a
pregnant woman has, whether he recognizes it or not, two patients—two
vulnerable persons under his care whose health is at stake. Those persons
stand in somewhat different relationships to the physician, for only one can
communicate her wishes and decisions, agree to be the physician’s patient,
and so on. But, as in the case of a traffic accident that a doctor happens
upon, we think that the proximity of the vulnerable child and the exigency
of the child’s health-related needs—not to mention the child’s relatedness to
the physician’s obvious patient—both contribute, in conjunction with the
physician’s vocation, to the physician’s having obligations directly to the
child in addition to the child’s mother.

That being said, the woman, as the child’s mother, has substantial authority
to make decisions both for herself and for her child. She is the one in the
position to evaluate the options in light of her own vocation. Although in
principle either decision could be fair, her vocational commitments and
obligations give her reasons in light of which she can determine which
choice to make in this awful situation.¹⁵ In our view, therefore, the decision
as to whether the physician should strive to preserve her life or the life of
her child is the mother’s to make.

A salpingectomy for an ectopic pregnancy is another paradigmatic scenario
in which the Way of Medicine permits a lethal intervention. In such a case,
the embryo has implanted in the woman’s fallopian tube. Continued
pregnancy will inevitably lead to the death of the embryo, and it also can
threaten the life of the mother if the fallopian tube ruptures. In a
salpingectomy, the surgeon removes the portion of the fallopian tube that
contains the embryo. Again, the physician’s end is to preserve the mother’s
life and health; the means is removing the compromised segment of the
fallopian tube. Negative effects of this intervention include not only the
embryo’s death but also the risk of future infertility in the woman. This case

seems to straightforwardly satisfy the rule of double effect, along the same
lines as the case of the woman with a gravid but cancerous uterus.

Before turning to more contentious cases, let’s consider the definition of
“abortion.” Earlier we argued that it is always impermissible to
intentionally kill an unborn human being. We then, in response to Judith
Jarvis Thomson’s line of reasoning, argued that in the great majority of
cases it is also impermissible, because unfair, to accept the death of the
unborn child as a side effect of an intervention to end the state of
pregnancy. However, the two cases we have just described—those of the
pregnant woman with cancer in her uterus and the woman with an ectopic
pregnancy—both indicate that in some cases a physician can intervene to
preserve the mother’s life and health even when doing so will inevitably
cause the death of an unborn human being.

So we propose to define “abortion” not as any medical intervention that
results in the death of an unborn human being but rather as any act that
either intentionally or unjustly ends the life of an unborn human being. All
abortion so defined is morally impermissible, and likewise, no act is an
abortion that accepts the death of an unborn human being as the justifiable
side effect of an attempt to preserve the mother’s life.

CONTROVERSIAL CONFLICT CASES

In this section we briefly discuss three cases that continue to be
controversial among proponents of the Way of Medicine. Although we
cannot settle these cases definitively, we show how the controversy
surrounding them illustrates the two different approaches to intention that
we described in chapter 5. In each case, the debate concerns whether the
death of the unborn human being is intended or is a side effect.

The Phoenix Case

In 2009 a dispute arose concerning whether an attempt to save a mother’s
life was an abortion or a justified application of the rule of double effect.
The case occurred in Phoenix, Arizona, and the hospital in question
described it thus:

A woman in her 20s with a history of moderate but well-controlled
pulmonary hypertension found out she was pregnant. There was concern for
her health, because pregnancy with pulmonary hypertension carries a
serious risk of mortality. Because of the severity of her disease, the
woman’s risk of mortality was close to 50 percent. In November 2009, the
woman was admitted to St. Joseph’s Hospital and Medical Center with
worsening symptoms. Tests revealed that she now had life-threatening
pulmonary hypertension. The chart notes that she had been informed that
her risk of mortality was close to 100% if she continued the pregnancy. The
medical team contacted the Ethics Consult team for review. The
consultation team talked to several physicians and nurses as well as
reviewed the patient’s record. The patient and her family, her doctors, and
the Ethics Consult team agreed that the pregnancy could be terminated and
that it was appropriate since the goal was not to end the pregnancy but to
save the mother’s life.¹⁶

How does one analyze this case with respect to the intention of the mother
and her doctors? In chapter 5 we distinguished between two accounts of
intention. For one, what matters primarily is what is proposed and
undertaken from the standpoint of the agent who is acting. For the other,
external factors such as closeness bear on what an agent intends. In the first
account, from the standpoint of the mother and the physicians, the fetus’s
death is not the means by which the strain on her heart may be relieved; the
means, rather, is removal of the connection between her child and her body.
The placental connection to the fetus is putting inordinate strain on her
heart, thus gravely threatening her health and life, and removing that

connection is itself the action necessary to preserve her life. So, in this first
account, the death of the fetus is not intended. We still need to consider
whether there was proportionate reason to allow the death of the fetus as a
side effect and, in particular, whether allowing that death was fair given that
the child was going to die no matter what was done. We return to this
question shortly.

But first, consider the following analysis advanced by Fr. Nicanor
Austriaco, which is emblematic of the alternative account of intention:

When the doctors chose to remove the child’s placenta to save his mother’s
life, they necessarily also chose to kill him, because they were choosing to
remove a vital organ of an innocent human being in a manner that would
end his life. They chose to kill him in the same way that a Mayan priest
who chooses to remove a beating heart from a sacrificial victim to placate
the gods also chooses to kill him. Evil was done (the killing of the child) for
the sake of obtaining a good (the restoration of the health of the mother).¹⁷

On Austriaco’s understanding of intention, to choose to “remove a vital
organ” (the placenta) is choosing to kill, regardless of how things are
understood from the agent’s perspective. Accordingly, the question is
settled immediately: intentional killing is always wrong, so the doctors’
actions in the Phoenix case were unethical.

We disagree with Fr. Austriaco’s analysis. The death of the fetus
accomplished nothing for the mother or the physicians. Rather it was
entirely the detachment of the placenta that was sought, and then the
subsequent removal of the placental and fetal remains. We do not think it
accurate to say that “they necessarily also chose to kill [the fetus].” Rather,
they chose to detach the placenta, foreseeing and accepting that the fetus
would be killed as a side effect.

There remains the question of whether this decision was fair, and here we
think the answer is clear. If the death was not intended, the decision to end

the pregnancy was certainly fair, as otherwise both lives would have been
lost. The intervention did not privilege one life over another but merely
preserved one life instead of sacrificing both. We think it evident that the
intervention honored the Golden Rule—that a reasonable person, faced with
a scenario in which both the child and his mother would die soon if nothing
were done, but in which his mother’s life might be preserved by a procedure
that would result in his death, would affirm the intervention to preserve his
mother’s life. This is not unlike an awful scenario in which one rock
climber who has fallen is hanging tethered to another, and both will die
unless the tether is cut. If the agent-centered account of intention is correct,
and if neither the mother nor her doctors intended her baby’s death, the
placentectomy was not an abortion and was instead a properly health-
motivated intervention, albeit one with a tragic consequence.

Ectopic Complications

Among proponents of the Way of Medicine, similar disagreements have
persisted about how to address ectopic pregnancies. As we noted,
salpingectomy is universally supported, but questions have been raised
about two alternate interventions, salpingotomy and administration of the
drug methotrexate.

In a salpingotomy, a longitudinal incision is made in the fallopian tube, and
the embryo is flushed out using a suction-irrigator. Obstetricians have
generally preferred salpingotomy over salpingectomy because it has been
thought that salpingotomy would better preserve the woman’s fertility,
though that intuition has not been born out in clinical studies.¹⁸ Meanwhile,
the direct physical connection between the intervention and the embryo’s
death has convinced some that the latter must be intended as part of the
former. Certainly, the connection to the embryo’s death is not as indirect as
it is in a salpingectomy.

Directness or indirectness, however, has no necessary bearing on whether
an effect is intended or not. Indeed, in the first philosophical treatment of

double effect, Thomas Aquinas argued that lethal force could sometimes be
used in self-defense. To us, the use of a sword to fend off an attacker has a
similarly direct connection to the resulting injury or death the attacker
suffers.

Moreover, it seems clear that the embryo’s death is generally not part of the
mother’s or the physicians’ proposals. Rather, their proposals are to
preserve the mother’s health and life by removing the embryo from a place
where it threatens grave danger to the mother. While the embryo’s death is
indeed an inevitable consequence, it is not needed as a means; presumably,
if the physicians could move the embryo to the uterus without harm, they
would. If that is true, as long as there is a proportionate reason to accept the
death of the embryo, as there seems clearly to be on the same grounds we
discussed with respect to salpingectomy, a salpingotomy is permissible.

Finally, there is the question of treating an ectopic pregnancy with the drug
methotrexate. This drug inhibits cell division in the trophoblast, which is
the precursor to the placenta. In an ectopic pregnancy, the trophoblast cells
burrow into the cells of the fallopian tube, as they would into the
endometrial lining of the uterus in a healthy pregnancy. By preventing cell
division in the trophoblast, methotrexate prevents the embryo from
remaining attached to the fallopian tube; without maintaining this
attachment, the embryo dies.

Again one can see why proponents of a less agent-centered account of
intention conclude that the use of methotrexate involves intentional killing:
the drug inhibits cell division not only in the trophoblast but also in the
embryo as a whole. Moreover, the trophoblast is part of the embryo, so it
seems again that the intervention directly attacks the embryo even if the
agent aims to affect only the trophoblast.

On the other hand, from the agent’s perspective, it seems that the aim is to
preserve the mother’s health and the means is detachment, which is
achieved by inhibiting the trophoblast cells specifically. The overall lethal
effect is not part of the proposal and thus not intended.

We may seem to be splitting hairs, but a question looms here that is hard to
settle: when an intended effect is part of a larger whole that is caused in

order to bring about the effect, is that whole itself intended? Elizabeth
Anscombe raised this question in relation to a case in which the Allies
bombed Dutch dikes to flood the Zeelands and thereby kill German
soldiers. Many Zeelanders were also killed, and the question Anscombe
raised is this: were they killed as side effects of an effort that targeted only
the Germans, or were the Germans killed as part of an effort to kill
everyone by means of the flooding? With respect to the use of methotrexate
for ectopic pregnancy, is the loss of cell division throughout the embryo a
side effect of an effort to block such division only in the trophoblast, or
does the agent intend to inhibit the cell division of the embryo as a whole in
order to inhibit cell division in the trophoblast? If the latter, the agent seems
to make the embryo’s death the means to the embryo’s detachment rather
than accepting it as a side effect of that detachment. Then the use of
methotrexate appears to be an instance of a chemical rather than a surgical
abortion.¹⁹

CONCLUSION

As we noted at the outset of this chapter, we cannot do justice here to all of
the arguments for and against abortion. Instead, we have aimed to show,
first, that abortion not only falls outside the proper scope of the medical
profession but that it contradicts that profession’s commitment to never
intentionally damage or destroy the life and health of any human being. In
addition, we gave reasons for thinking that a stronger conclusion is true:
that no one should ever intend the death of an unborn human being, nor
should they accept such a death as the foreseen side effect of unjustly
refusing to give aid to an unborn human being. Finally, we showed that the
rule of double effect is essential to practical reasoning about hard cases:
cases in which one or both of the lives of a mother and her child will be lost
in the absence of an intervention that itself has lethal effects.

This concludes our treatment of medical ethics at the beginning of life. We
turn now to the practice of medicine and medical ethics at life’s end.

CHAPTER EIGHT

Medicine at the End of Life

Now let’s return to the story of Abe Anderson and look further into that of
Nora Garcia.

Abe has been found to have advanced cancer.

Nora has suffered a devastating stroke.

In this chapter we will examine the ethical questions that arise in caring for
patients with advanced illness or those who are at the end of life. Most
clinical ethics consultations are called to address such questions, which is
natural enough, given the two kinds of limits we face. First, we face the
limits imposed by human mortality. Aging happens; health declines
irrevocably. The health that can be restored is less than it once was. Losses
abound; death looms. These limits raise this question: how does one
appropriately pursue health when health is irreversibly diminishing?

Second, we face the related limits of medicine. Medicine cannot reverse
aging. It cannot overcome the fact that all of us will die, relatively soon. So
medicine’s efforts become more strenuous and burdensome in exchange for
less substantial gains. More is wagered, but less is accomplished. Leon
Kass memorably wrote, “Health is a mortal good, and . . . we are fragile
beings that must snap sooner or later, medicine or no medicine. To keep the

strings in tune, not to stretch them out of shape attempting to make them
last forever, is the doctor’s primary and proper goal.”¹

Since the advent of the mechanical ventilator, however, physicians, patients,
and family members have come to experience the default pathway for dying
in American healthcare precisely as a process of being stretched out of
shape by life-sustaining technology in a vain attempt to postpone death as
long as possible. Unfortunately, out of otherwise reasonable desires that
death and the suffering that accompanies it not be unreasonably prolonged,
some have moved to embrace death itself as one of the ends of medicine, as
if destroying the instrument were the best means of tuning the strings.

What would it look like merely to keep the strings in tune or at least in such
tune as is available? And why is destroying the life of a patient not a
solution to the problem of the patient’s strings being stretched out of shape?
In this chapter we address the first of these questions, and in chapter 9 the
second.

SEEKING THE HEALTH THAT IS POSSIBLE

Abe Anderson and his wife undergo in vitro fertilization, and two years
later they are the proud parents of twin girls. One day Abe’s wife notices
that his eyes look yellow. Abe returns to his doctor. Radiographic imaging
reveals a tumor in his pancreas, with multiple lesions in his liver. A
procedure is done to place a stent in Abe’s bile duct, and biopsies confirm
what everyone fears: he has metastatic pancreatic cancer.

What should the doctor suggest in the face of Abe’s diagnosis? How should
Abe discern a reasonable way forward? We have proposed that the end of
medicine is health; what could it mean to pursue the health of a patient
whose disease is incurable? What health-related options are available to
someone in Abe’s tragic but not uncommon situation?

For simplicity’s sake, suppose that Abe’s physician believes she can present
Abe with two options. We want to ask, first, are these options genuinely
permissible for a doctor vocationally committed to health, and second, how
should Abe deliberate about these options practically?

Option 1 is to undergo a regimen of chemotherapy. Clinical studies indicate
that patients like Abe who receive this regimen live only a month longer, on
average, and many die sooner than they otherwise would have, but about
one in five patients survive at least a year. Major side effects of this regimen
include nausea, vomiting, fatigue, anemia, and immune suppression.

Option 2 is to focus on palliation—treating Abe’s pain and other symptoms
as they arise and working to sustain his remaining health and function using
interventions that are not particularly burdensome, but forgoing further
cancer-directed treatment. Often a palliative approach is structured under
hospice care. Clinical studies indicate that patients like Abe who choose
Option 2 will live about as long, on average, as those who receive
chemotherapy. However, almost all such patients die within a year.

Consider how this decision would be framed under the provider of services
model (PSM). First, physicians and patients would consider the universe of
options that are technically possible, permitted by current law and
professional standards, and available in the patient’s context. The
conventional approach would not hold these options up against a specific
end or norm, such as the patient’s health. The patient and the clinician
would thus not be accountable to an objective standard, although they
would still have resources for discernment. They could apply the four
principles of bioethics—autonomy, beneficence, nonmaleficence, and
justice. Alternatively, they could try to put the known benefits and harms of
the two approaches onto some kind of scale to determine which course of
action would bring about the greatest good for the greatest number, or at
least bring about the greatest good for Abe.

Under the PSM, the resolution of the matter ultimately defaults to the
patient’s wishes. No one but the patient, after all, is in a position to weigh
all of these considerations against the subjective norm of the patient’s well-
being—the state of affairs that the patient judges to be most desirable, that
most aligns with the way the patient authentically chooses to live. In this

light, Abe might reasonably choose Option 1 because it would maximize
the likelihood of his being alive in a year, a state of affairs he highly values,
and because it would align with his identity as a “fighter”—someone who is
not going to roll over and surrender to cancer. His physician might go along
because she believes that treating the cancer aligns with the principle of
beneficence and that doing what Abe requests respects his autonomy.

Abe might choose Option 2 because he believes it would maximize the
likelihood that he could avoid pain and other symptoms or at least they
could be adequately treated. Being without pain is another state of affairs he
highly values, ensuring that he would have a decent quality of life and
could continue for as long as possible to do the things that make him who
he is. His physician might support this approach because it seems to align
with the principle of nonmaleficence and, again, to honor Abe’s autonomy.
Either way, the goal is for Abe to make a choice that is free, informed, and
authentic to his self-perception. A choice that meets these criteria would be
made ethically, irrespective of what is chosen.

To summarize, under the PSM the physician offers the range of legally
permitted and medically available options, and the patient autonomously
chooses the options that comport with his or her own subjective sense of
well-being.

Interestingly, the Way of Medicine offers guidance that seems to overlap
considerably with the PSM approach, although crucial differences
distinguish the two. In the first place, options and choices that seem
unmotivated by anything other than conventional expectations and
subjective preferences under the PSM are given objective guidance in the
Way of Medicine. Second, the objective norms that practitioners of the Way
of Medicine apply here, where the two approaches overlap, result in very
different guidance further down the line when patients are reaching for last-
resort options.

THE PHYSICIAN’S OPTIONS

The Way of Medicine begins with health and with the physician’s
orientation toward the health that still can be preserved and restored in the
patient. Abe’s dire situation calls for some reminders about what health is
and what it is not; practitioners must not lose this orientation. Health is not
the absence of disease. If it were, the good of health would no longer be
available to Abe, and his physician would have nothing more to do. Nor is
health a matter of black-and-white. Clearly Abe’s health will be forever
diminished by pancreatic cancer; speaking colloquially, we might say that
Abe will never again be healthy. Yet much health remains for Abe, and until
his last breath he will enjoy some measure of it, however diminished and
unsatisfactory.

Further, health is complex in its dimensions. Abe’s physician rightly has in
mind Abe’s health as a whole organism, given our definition of health as
“the well-working of the whole.” But the complexity of the whole means
that different dimensions of health are at stake in clinical decisions, and
pursuit of one dimension often has adverse consequences for another
dimension. In addition, health is a basic human good but not the only or
even the highest good. As such, at the outset we know that ignoring health
or certain dimensions of health makes sense under some conditions. Abe’s
physician needs to be mindful of these conditions.

The threshold question for a physician—the one that sets out the universe of
options to consider—is which, among the technically feasible courses of
action, are those plausibly conducive to the patient’s health? In this
framework, Option 1, the regimen of chemotherapy, can reasonably be
offered only insofar as it aims at and has some probability of preserving or
restoring the patient’s health. Does it?

With Option 1, there is no clear answer. If the chemotherapy would increase
by only 1 percent Abe’s probability of living for one year, the answer would
more obviously be no. If it increased that probability to 50 percent, that
answer might obviously be yes. But in the case as it is, Abe’s physician
must make use of her prudential medical judgment: does this regimen offer
a sufficiently realistic possibility of benefit that pursuing it would not be
pointless? If Abe’s physician believes a regimen is pointless, she does her
patient no real service by offering the option. The offer would waste her

patient’s time, money, and energy and would subject him to other negative
effects.

We think Abe’s physician could reasonably judge Option 1 a live option in
terms of its potential health benefits, but what about its harms: anemia and
immune suppression, not to mention nausea, vomiting, and fatigue? How
can Abe’s physician reasonably inflict these harms on Abe? How can she
cause harm to Abe’s health without contradicting her profession, and what
would give her sufficient reason for doing so?

According to the Way of Medicine, the physician should never intentionally
harm or destroy Abe’s health. Certain options are simply off the table. But
the rule of double effect teaches that Abe and his physician might
reasonably accept injuries to health or other goods when those injuries are
foreseen but unintended side effects of pursuing Abe’s health. As such,
Option 1 could be reasonable from the physician’s standpoint insofar as the
anemia, nausea, and so on were not part of her intention. Some observers
would argue that we dissimulate here, that it is nonsense to say that the
physician does not intend the immune suppression, nausea, and so on when
she knows with certainty that such harms result from a course of
chemotherapy. But a good physician might administer Option 1 with the
intention of destroying cancer cells and thereby improving the patient’s
health, not intending to cause nausea or anemia. That the latter are not part
of the physician’s intention is made clear by the observation that, for
example, if the patient does not experience nausea, the physician would not
consider herself to have failed (although she might wonder whether the
drug was administered correctly).

What about Option 2? How could it be reasonable for a physician—whose
commitment is to her patient’s health—to offer or participate in a palliative
approach to illness that seems to be detached from the pursuit of Abe’s
health? How could it be reasonable to forgo treatments that might extend
Abe’s life or, in other cases, even cure the patient? How can one hold, as
does the Way of Medicine, that palliative medicine is oriented toward rather
than abandoning patients’ health?

Thinking of palliation as oriented to health can certainly seem strange. Isn’t
palliative care pursued, after all, precisely when health can no longer be

restored, as in Abe’s case? This way of thinking, however, misidentifies
health as the absence of disease. One cannot capture all the dimensions of
Abe’s health by focusing only on his cancer. Nor is health the only good
that Abe has in view. So while Abe might, as we will see below, reasonably
choose not to pursue aggressive treatment of his cancer—perhaps because
of commitments to other basic goods—his physician can still maintain a
commitment to his health in dimensions other than the fact of his cancer.
Put another way, palliative medicine is indeed good medicine for a patient
like Abe, as we will address in greater detail below.

Authority manifests in Abe’s situation as follows: Under the PSM, authority
is vested, in the guise of patient autonomy, almost exclusively in the patient.
Abe has the authority to choose among the universe of options that are
technically feasible, legal (and not prohibited by professional policy), and
available in his context. The physician’s authority is rather limited. She is
authorized to refuse interventions that are technically infeasible, illegal, or
unavailable, and she retains the authority to refuse interventions that are
futile in relation to the patient’s goals. For example, the physician might
refuse a chemotherapy regimen that clinical trials do not support. By habit
and residual convention, at least to this point, physicians also generally
retain the authority to refuse to participate in interventions that cause major
direct harm to their patients’ health, particularly when the prospects of a
proportionate health benefit are doubtful. If Abe begins to suffer severe
immune suppression, the physician might stop his chemotherapy regimen,
even if Abe wants to continue. Although this authority of refusal continues
at present as a matter of convention, such refusals may not make sense
within the PSM insofar as they suggest an objective standard for harms and
benefits that the framework denies. Physicians’ refusals appear rather to be
a holdover—one of many—from the Way of Medicine that will increasingly
come to seem an arbitrary imposition of the physician’s judgment regarding
what the patient should value.

In the Way of Medicine the physician retains the authority to decide which
courses of action sufficiently conduce to the patient’s health and thereby
cohere with the medical profession. Perhaps Abe has read about an
experimental treatment that his physician believes poses too much risk to
health with too little prospect of benefit. She exercises her authority justly

when she refuses to offer such treatment. Recall, however, that the Way of
Medicine does not limit physicians to one course of action that maximizes
health. Among the options plausibly conducive to the patient’s health, the
physician has good reason to recommend the one that she believes is best,
all things considered, while taking into account the patient’s input.
Typically no one “best” option is available, however, even in terms of
health outcomes, so the patient has the authority to decide among the
physician’s proposals. A physician can be both too accommodating,
cooperating in medical practices that are not congruent with her
commitment to health, and too scrupulous, mandating the course of action
that the physician believes is best rather than offering patients a choice
among reasonable options.

THE PATIENT’S OPTIONS

We can’t forget the patient’s perspective. How should Abe think of the
options his physician has presented? Our answer consolidates much that we
have already discussed and introduces two terms that help us to further
explain the Way of Medicine.

The starting point for Abe’s deliberations is that he should not intentionally
damage or destroy any basic good, including the good of life and health.
Any choice he makes among the options presented to him, however, will
result in some damage to the basic good of health. Option 1 risks an earlier
death and will cause Abe to suffer the negative side effects of
chemotherapy. Option 2 will forego the opportunity to potentially prolong
his life and advance his health, even if only temporarily.

In light of the information available to him, Abe must determine whether he
can reasonably pursue the associated benefits and accept the associated
burdens of these options. He must ask, in other words, whether the benefits
he would seek are proportionate to the burdens he must accept, or,
alternatively, whether the harms he would avoid are proportionate to the
benefits he must forego. This familiar practical scenario requires Abe to

apply the rule of double effect. If Abe chooses uprightly, the negative
consequences of his choices will always be side effects.

In making clinical choices, patients like Abe face burdens that extend
beyond negative effects on health, including losses of time and money, as
well as losses of other opportunities. The patient also may experience
emotional aversions and repugnances toward an intervention, if, for
example, it leads to hair loss, fatigue, incontinence, or impotence. Abe must
consider all of these factors as he weighs his options, but by what standard
is he to evaluate them?

The fitting standard in our view is his vocation. Abe is a husband and a
parent of two small girls. His life situation is considerably different from,
say, that of Mrs. Garcia, an elderly woman whose situation we consider
later in the chapter. Abe has work obligations and debts. Perhaps he is
alienated from certain friends or family members. Maybe he is a religious
man, or perhaps he has let his religious life drift and feels estranged from
God. All these considerations must be brought to bear on his options to
determine which best fit his range of vocational commitments and
responsibilities.

Sometimes a patient will judge all of the treatment options compatible with
his or her station in life. In that case, in a sense, not much hangs on the
patient’s choice. But in many cases, some treatment options are ruled out as
incompatible with the patient’s vocation. Abe might, for example, judge
that for him the benefits of Option 1 are simply not proportionate to its
burdens. If so, we could say, using language traditional to the Way of
Medicine, that for him Option 1 is extraordinary. Those options that he
judges acceptable, in contrast, we can call ordinary. An extraordinary
treatment should not be chosen; an ordinary treatment may be and
sometimes must be chosen—if, for example, it is required by his vocation.

Some proponents of the Way of Medicine might object that our view here
seems like a version of the PSM, with its emphasis on patient choice, well-
being, and authenticity. We disagree. Although patient vocation is a relative
standard, it is not subjective. Presuming that he is clear-thinking and
reasonable, Abe uniquely understands his own vocation, and he forms his
judgments of what is ordinary and extraordinary in relation to that vocation.

Moreover, judging in accordance with one’s vocation is judging
authentically and autonomously, but Abe’s judging autonomously is not
sufficient for moral rightness, for Abe can judge wrongly that some option
is consistent with, called for by, or incompatible with his vocation.

Consider, for example, that the palliative option offers him the most quality
time with his family and the clearest mind with which to face his impending
death. Perhaps it will also be too financially and emotionally taxing for his
young family to accompany Abe on the path of chemotherapy, especially
when the benefits are so tenuous. So let us suppose that Abe, consistent
with his vocation, chooses the palliative care option. Making such a choice
requires some real virtues: wisdom, to recognize that it is the right choice,
and courage, to face the hard truth that he will likely be dead within a short
period of time. Virtue being always in short supply, Abe will face abundant
temptations to choose something that (we are stipulating) offers only a false
hope and only the appearance of fighting. That Abe has the authority to
make such a choice does not make his choice right. Even here, despite
apparent similarities, the Way of Medicine differs fundamentally from the
PSM.

THE RELIEF OF SUFFERING

Before going further, let’s return to a question raised by Option 2, the
prospect of a palliative approach to Abe’s illness. Palliative medicine treats
pain and other symptoms, thereby reducing suffering. What does reducing
suffering have to do with medicine—that is, with the patient’s health?

As mentioned earlier, by forgoing medical interventions that are
burdensome and time-consuming, a palliative approach leaves more room
for a patient to pursue other worthy goods—whether work, play, worship,
or simply putting one’s affairs in order before dying. In this sense, a
palliative approach is justified insofar as it avoids the mistake of treating
health as if it were the only or the highest good. Palliative medicine goes
further, of course, by treating pain and other causes of suffering.

But this key objection remains: the notion that palliative medicine aims at
health seems counterintuitive, because it seems that we deploy palliative
medicine when health can no longer be restored, when diseases are
incurable. This intuitive way of thinking, we propose, misunderstands
health as well as the practices of palliative medicine. Again, health is not
merely the absence of disease. It is, as Leon Kass put it, the “well-working
of the organism as a whole,” manifest in the activity of the body “in
accordance with its specific excellences.” Kass pointed to a squirrel to
illustrate health. A squirrel’s health is displayed in its characteristic
activities of well-working, such as burying nuts, chattering, and climbing
trees. The characteristic activities of humans are more varied, of course, and
so therefore are their expressions of health, but such expressions certainly
include the capacity to eat and digest food without vomiting it up, to move
one’s bowels, to sit or lie or walk without wracking pain, and to stay awake
and fall asleep at the proper times. Palliative medicine cannot return Abe to
the state of health he had before his diagnosis, but if it helps him go from a
state of nausea, constipation, insomnia, and wracking pain to one in which
he is able to tolerate food, move his bowels, sleep six hours at night, and
move around free of debilitating pain, palliative medicine will have
contributed to Abe’s health. These sorts of contributions to health make it
possible for Abe to pursue other goods still available to him.

Here the distinction between the PSM and the Way of Medicine begins to
have practical and not just theoretical consequences. Palliating disabling
symptoms with an eye to preserving and restoring a measure of health
differs fundamentally from palliating symptoms without respect to whether
doing so will restore health. Physicians should respect this distinction,
embracing the former practices of palliation and resisting the latter.

The PSM, however, treats this distinction as clinically and ethically
insignificant, urging pursuit only of that state of affairs that the patient
values or desires. By this standard, only coldhearted and unreasonable
doctors would refuse interventions that would end a patient’s suffering
simply because those interventions might contradict medicine’s traditional
orientation to health. What good does this narrow focus on health do for a
patient dying of cancer?

In the environment of the PSM, “palliative care” has come to be cast as a
broader, more holistic, more comprehensive form of professionalized care
than mere medicine can offer. In effect, rather than being an essential
practice within medicine, palliative care becomes an alternative and rival to
medicine, with more expansive goals. For example, the World Health
Organization defines “palliative care” as “an approach that improves the
quality of life of patients and their families facing the problems associated
with life-threatening illness through the prevention and relief of suffering
by means of early identification and impeccable assessment and treatment
of pain and other problems, physical, psychosocial, and spiritual.”²

This formulation gives palliative care a seemingly boundless scope of
activity. What problems, after all, are excluded from the categories of
physical, psychosocial, and spiritual? In this formulation, the goal is not
restoring health per se, but rather relieving suffering and improving a
patient’s quality of life. That goal is to be achieved through assessment and
treatment—concepts that resonate with the vocabulary of medicine—yet
neither suffering nor quality of life is necessarily related to health.

When efforts to relieve suffering and improve quality of life become
unhinged from the goals of preserving and restoring health, palliative
practitioners begin to see all forms of suffering as conditions that call for
treatment, including existential suffering. Furthermore, because palliative
care is committed to maximizing patient control, and because only the
sufferer can authoritatively assess suffering and quality of life, palliative
care practitioners trade clinical judgment oriented to the patient’s health for
the direction given by patient preferences. Indeed, palliative professionals
are often encouraged to relieve conditions on the basis of the patient’s
considering the condition “unacceptable” or “intolerable,” setting aside the
physician’s judgment regarding how the condition or its treatment is health-
related.³

Ultimately, in order to minimize suffering and maximize quality of life, and
to do so according to patients’ values, physicians come to consider death
itself, albeit a “good death,” as one of their goals. The National Hospice and
Palliative Care Organization describes “hospice” as follows: “Hospice
affirms the concept of palliative care as an intensive program that enhances

comfort and promotes the quality of life for individuals and their families.
When cure is no longer possible, hospice recognizes that a peaceful and
comfortable death is an essential goal of health care.”⁴ In this formulation,
palliative care shifts from relieving disabling symptoms so that patients can
live as well as possible in the face of death to treating unwanted symptoms
so that patients can die comfortably. It shifts from helping patients who are
dying to helping patients to die.

No wonder that recent years have witnessed a groundswell of support for
“last-resort options” in palliative care, including physicians’ helping their
patients to die via suicide and euthanasia. These last-resort options are the
focus of chapter 9.

THE LOSS OF DECISION-MAKING CAPACITY

Nora Garcia is an eighty-year-old woman with a history of diabetes, high
blood pressure, and coronary artery disease. At the encouragement of her
geriatrician, Mrs. Garcia wrote a living will in which she stated that if she
were in an irreversible coma, she would not want to be kept alive. She also
told her physician in a conversation that he documented that she never
wanted to be stuck on a breathing machine. “Just let me go,” she said. One
day Mrs. Garcia develops a fever, chills, cough, breathlessness, and
confusion. By the time an ambulance delivers her to the local emergency
room, she is found to be on the brink of respiratory failure from pneumonia.

Mrs. Garcia’s case brings to light the common phenomenon of patients who
are not able to make medical decisions for themselves. Young children do
not have the capacity to make their own medical decisions, and even older
children, for the most part, lack authority under the law to make medical
decisions. Adults, however, are expected to be self-determining, and as
people age many fear that they will be treated in ways they do not want—
either receiving more medical interventions than they desire in the default

pathway for technological medicine or receiving less medical support than
they believe they deserve. In his best-selling book Being Mortal, physician-
author Atul Gawande lamented the fact that despite handwringing all
around, patients continue to suffer and die in ways that depart from what
they say they would want, and contemporary medicine bears much of the
blame.⁵

The problem is not that patients are receiving medical interventions that
they actively refuse. Rather, the default pathway moves people inexorably
toward life-sustaining technology that, when people are in better health,
many would not imagine wanting. When people lose the capacity to make
decisions for themselves, they often remain on that default pathway,
continuing to receive interventions that they did not desire when healthy,
and still would not desire.

The PSM has sought to address this problem by shoring up patients’
autonomy, ensuring that medical care at the end of life accords more fully
with patients’ wishes. The primary mechanism for bolstering patients’
autonomy, and the one that has received the most public attention and
encouragement, is advance directives. Advance directives permit patients to
specify, in writing, what kinds of medical treatment they would want if they
were to suffer injuries or other health losses in the future. A living will
(which Mrs. Garcia had) sets out in writing what kind of medical treatments
one would want. Increasingly, physician orders for life-sustaining treatment
(POLST) are used to specify these wishes and give them authority within
health care. A durable power of attorney for health care (DPOAHC)
specifies who is authorized to make health care decisions for the patient if
the patient cannot make decisions for himself. Different advance directives
carry different levels of legal authority, depending partly on where the
patient lives, but all of them become active when a patient loses decisional
capacity. In theory, advance directives ensure that patients’ autonomy is
respected when patients cannot exercise that autonomy. In practice, advance
directives help to mitigate the pattern that Gawande and others have
observed, in which patients who lose decisional capacity cannot get off the
train that leads to unwanted and unhelpful medical interventions.

A number of criticisms have been raised regarding advance directives. The
first is that they do not genuinely protect or further autonomy. Mrs. Garcia,
when she wrote her living will, could not have anticipated the particular
situation in which she is now, and now that she is in this situation, she does
not have any autonomy. She still deserves respect, but her autonomy cannot
command our respect when her illness has removed that autonomy.

The emergency room physicians face an urgent question: should they
intubate Ms. Garcia to support her breathing while they give her fluids,
antibiotics, and other ministrations in hopes of restoring her to the health
she had before this infection? Or should they forgo the ventilator in light of
her statement that she would not want to be kept alive on a breathing
machine, knowing that without the ventilator she likely will not survive the
next twenty-four hours?

The PSM emphasizes the subjective norm: what would she have wanted?
The problem is that her physicians cannot know, because Mrs. Garcia
herself could not know, what she would want in this particular situation.
She certainly didn’t envisage this scenario when she wrote her living will.
With an unclear advance directive—and most living wills are similarly
unclear—physicians typically turn to duly authorized surrogate decision-
makers. While we address surrogates in a moment, let’s assume at this point
in the story that no such surrogates are available. In the conventional
approach, in light of uncertainty about what the patient would have wanted,
the physicians might do what most people want them to do in such cases—
that is, what people who have the capacity to choose typically choose: they
would intubate Mrs. Garcia to see if they could turn her illness around.
Such decisions are sometimes justified on the grounds that they restore the
patient to a state in which she can make a more considered, authentically
autonomous, choice. Dying, of course, cuts off all possibilities of future
autonomy.

On the Way of Medicine, Mrs. Garcia’s physicians have good reason to act
expeditiously to maintain the health that can be preserved using reasonable
means. This aligns with the constitutive purpose of medicine—a
predisposition to preserve health when possible. This disposition reasonably
accepts that health is a basic good for an eightyyear-old, just as for a

twenty-five-year-old; age can limit what health is possible but not the
goodness of health itself.

As we have stressed, health is not the only good, and actions available to
restore health have limits. Therefore, physicians need not do everything
possible to keep Mrs. Garcia alive, as if there were no other goods at stake,
and they need not do anything that is clearly either excessively burdensome
or unlikely to preserve or restore a significant measure of health. These
judgments are always context-dependent and require the physicians’
prudence. What would be reasonable in an average US city may not be
reasonable in a remote part of a developing country. And age matters
insofar as the health of an eighty-year-old is more tenuous and attenuated,
all else being equal, than that of a twenty-five-year-old.

We are not claiming that patients lose the authority to refuse medical
interventions—even those interventions that have great promise for
restoring health. If Mrs. Garcia had stated clearly that she was never to be
intubated, period, her physicians should decline to intubate her as a matter
of respect for the patient’s authority to make such decisions prospectively;
her decision-making authority can be respected, even if she has no
autonomy to respect. The patient’s authority is all the more in view if he or
she has taken some legal step to give that refusal force and indicate that the
decision is a considered one.

Because patients cannot anticipate every contingency, however, living wills
are generally less useful than are DPOAHCs. Unlike living wills,
DPOAHCs allow a patient to delegate authority for future decision-making
to a person the patient trusts. Even if the objective is to secure decisions that
the patient would have made if she were able to make them for herself, the
DPOAHC is preferable insofar as the patient can have in-depth discussions
with her authorized surrogate and give the surrogate the flexibility to fit a
future decision to the complexity of the patient’s story and the details of the
specific clinical situation. In any case, if an advance directive does not
unambiguously address the clinical question at stake, physicians are taught
to use the second procedural mechanism: surrogate decision-makers.

SURROGATE DECISION-MAKING

The physicians intubate Nora Garcia. After a rocky course of three days,
she is taken off the ventilator. She is very weak but improving slowly. The
next morning, she is found unresponsive in bed. An urgent CT scan of her
head finds a large hemorrhagic stroke. The doctors go to Mrs. Garcia’s
three grown children, who have now gathered, in order to have an urgent
family conference and decide what to do next.

When a patient is incapacitated, someone must have the authority to make
medical decisions for her. It seems reasonable that such authority resides
with the one to whom the patient has explicitly granted it if the patient has a
durable power of attorney for healthcare or, in the absence of such explicit
declaration, to those closest to the patient: her spouse, adult children, and so
on. But what standard should these surrogate decision-makers use in
exercising their authority on Mrs. Garcia’s behalf?

With its singular emphasis on patient autonomy, the PSM has come to
affirm what is called the substituted judgment standard. Out of respect for
patient autonomy, physicians are taught to approach the legal surrogate or
surrogates—in this case, Mrs. Garcia’s children—to explain the situation
accurately, including the options that are technically feasible, legal, and
available, and to encourage the surrogates to make the choice that the
patient would make if she were able to choose. The physician might say,
“The question is not what you think is best or what we might think is best.
The question is this: what would she have wanted?”

The substituted judgment standard has several problems. First, substituted
judgment, in such cases, seems to sustain a façade of respecting autonomy
that both hides and distracts clinicians and surrogates away from the actual
question faced: all things considered, what is a fitting way to care for this
patient? One cannot respect what does not exist, and Mrs. Garcia does not
possess autonomy in her state. Rather, she is utterly dependent on those
who would care for her. Moreover, to divine what she would have chosen if

she could have chosen for herself is an exercise fraught with uncertainty.
Researchers have found that close family members, including spouses, are
notoriously inaccurate in predicting what their loved ones would want in
prospective clinical situations.⁶

A final problem with the substituted judgment standard is that it divests
physicians of a responsibility that they are obligated to exercise. Because of
the subjectivity of what the patient would have chosen if she could have
chosen for herself, the substituted judgment standard puts physicians in a
passive role of merely giving information and options, deferring to the
surrogates to make an informed choice. The physicians’ primary aim as
healthcare professionals, however, is not to find what the patient would
choose if she could do so. Rather, the physicians’ aim is to find a way to
preserve and restore the health of the patient that still can be reasonably
preserved or restored and to do so in a way that respects the patient’s
authority to give consent only to those proposals that fit her vocation.

Although the patient’s authority has moved to surrogate decisionmakers, the
physicians ought not assume a passive posture. They should listen to and
consider the surrogates’ statements about the patient’s vocation—how she
lived, what her obligations are, what she loved, what they think she would
encourage them to choose if she could—and, as we will see, the surrogates’
statements about their own vocations. The physicians listen in order to
propose courses of action that they believe align with the patient’s health
and vocation in light of this information.

The physicians should not by default encourage the family to “do
everything.” Indeed, in many cases the physicians can state, as the
Hippocratic tradition suggested long ago,⁷ that medicine has little left to
offer other than solidarity and basic care. Health is a good that cannot be
preserved forever, and in Mrs. Garcia’s representative case, the patient’s
surrogates might reasonably focus on other goods. The primary point is that
when a patient cannot exercise her authority to give consent for medical
interventions, that authority shifts to the patient’s surrogates, but the
structure of the physician’s discernment remains the same: the goal is to
find a course of action that aligns with the physicians’ orientation to the

patient’s health while remaining open to other basic human goods and the
relevant truths about the patient’s vocation.

Yet another question arises here: whose vocation is to guide the
surrogate(s)’ decision-making? The answer is that the surrogates’ vocations
now provide the relevant standard. Thus our view not only differs sharply
from the substituted judgment standard but also differs somewhat from the
best-interest standard. According to the latter, surrogates should judge and
act in accordance with what is objectively best (often identified as in the
“medical best interest”) for the patient. That standard is superior to the
substituted judgment standard insofar as it reflects the truth that surrogate
decision-makers are charged to care for the ill and incapacitated patient,
making the patient’s welfare central to their consideration.

But surrogates have other concerns and other vocational commitments.
They may have children or spouses who depend on them. They may have
jobs to do and bills to pay. Surrogates can’t abandon these. Accordingly, the
terms discussed earlier—extraordinary and ordinary burdens and treatments
—become apt for the surrogates’ consideration. They are faced with options
whose benefits and burdens bear not only on the patient but also on the
surrogates themselves. Which interventions are ordinary and which are
extraordinary now has to be determined in light of the surrogates’ vocations
—vocations that include but are not limited to obligations to care for the
loved one in question.

INTENTION AND PROPORTIONALITY: A CASE STUDY

Abe Anderson opts for chemotherapy, planning to receive an infusion
biweekly for three months. Six weeks into this plan, repeat radiographic
imaging reveals that his tumors have grown despite treatment. Meanwhile,
he has lost thirty pounds and is starting to have severe abdominal and back
pain. Vicodin no longer relieves the pain, and Abe’s doctor recommends
scheduled doses of morphine. Abe’s wife worries about his being sedated
and about addiction to opioids.

How can Abe’s physician reasonably prescribe morphine in this case, when
she knows that doing so likely will lead to her patient’s physiological
dependence on morphine? Once again, we must advert to the rule of double
effect. Administering morphine has good effects—relief of pain—and bad
effects: constipation, sedation, dependence, and more. What makes the
physician’s action reasonable, according to that rule, is that she intends only
the good effects—in this case, the relief of Abe’s health-diminishing pain—
and that proportionality rests between the expected goods and harms. This
judgment of proportionality is not a matter of looking for one choice that
maximizes the net goods; no such choice can be known due to the goods’
incommensurability. It is a matter of considering the gravity of the goods
and harms at stake.

For example, if Mr. Anderson’s pain were minor, the physician would have
less reason to administer morphine. Proportionality also governs dosing:
physicians need not be squeamish about giving adequate pain relief, but
they are prevented from giving dosages that far exceed what one might
reasonably expect to relieve Mr. Anderson’s pain.

In this case, however, Abe’s pain is serious. Given that he has relatively
little time left to live, the risk of dependency does not seem as significant as
it might otherwise. So it seems reasonable to prescribe him morphine to
address his pain, provided that the side effects of constipation and sedation
are acceptable to him.

Over the next two weeks, Abe Anderson grows steadily weaker and sleepier,
often remaining in a state of somnolence. His wife wonders if the doctors
are overmedicating him.

Mrs. Anderson’s question points to the difference the Way of Medicine
makes. In the PSM, her concern prompts a question: what does Mr.
Anderson really want, or what would he choose if he could choose for

himself? If Abe’s current experience suggests that the morphine dosing is
not hitting the right balance, his doctors can adjust the medication
according to his desires. In the PSM, whether the physicians are disposed to
increase or decrease the dosing in this case depends entirely on the patient’s
wishes. Indeed, family members often ask that medication doses be
increased to preclude any possibility of the patient’s suffering.

The Way of Medicine, in contrast, returns once more to the norm of Mr.
Anderson’s health, with the rule of double effect helping the physicians stay
on track. Is the morphine achieving the relief of health-diminishing pain,
and is it doing so in a way that is proportionate to the adverse side effects?
Can the former be achieved in a way that does not bring as much of the
latter? These questions require the physicians’ clinical judgment, which
changes when circumstances change. For example, the effects of sedation
that seemed minor when accepted as a consequence of relieving severe pain
may seem more consequential when they are the consequence of moving
from adequately relieved to completely relieved pain. Accepting some level
of discomfort might be reasonable in order for Abe to maintain some degree
of consciousness, if doing so allows him to interact with his family and to
prepare himself for death. On the other hand, the sedation that was a heavy
burden when it kept Mr. Anderson from putting his affairs in order may
become a minor burden when he is actively dying.

Critically, Abe’s physician rightly limits herself to those actions that are
congruent with her commitment to her patient’s health. She would be
reticent, for example, to push the morphine dose high enough to render Mr.
Anderson unconscious, even though by so doing she could prevent any
further suffering. But she would also be reticent to watch her patient writhe
in agony while abstemiously titrating up the dosing in tiny intervals out of
concern for going too high. Finding the right practice here requires
judgment, which is gained through long years of experience in pursuing
patients’ health while respecting the requirements of practical reason.

Nora Garcia’s children were conflicted when her physicians asked them to
decide whether she should be intubated or not. In the context of their
uncertainty, the physicians intubated Mrs. Garcia. Three weeks later, she

coughs when her airway is suctioned, but she still has not recovered enough
to respond meaningfully to voice or touch. She receives ventilator support
via a tracheostomy and nutrition via a feeding tube inserted through her
abdominal wall. At this point, her three children together come to the
physicians, saying, “We had hoped she would recover, but she has not. She
would never have wanted to continue like this.” The children ask that the
ventilator be discontinued. “Just keep her comfortable,” they say.

In the PSM, the physician’s obligations in regard to removing the ventilator
are straightforward. The law allows life-sustaining technology to be
discontinued; the duly appointed surrogates are requesting that it be
discontinued; and, moreover, they are doing so according to the substituted
judgment standard—they are making the request that they believe Mrs.
Garcia would make if she were able. To make sure the surrogates’ choice is
informed, the physicians should tell the surrogates what they expect will
happen as a result of discontinuing the ventilator, but then the physicians
must do what is requested.

An additional issue arises: how to keep Mrs. Garcia comfortable when and
after the ventilator is removed. Should narcotics and sedatives be given
prospectively to reduce the chance that she will experience breathlessness
and subsequent distress in the short time she is expected to live after life
support is withdrawn? If so, what norms guide the dosing of such
medications? Again, the answer is easy in the PSM: the norm is to
minimize suffering and maximize quality of life according to the wishes of
the patient or her surrogates. Therefore, after explaining to the family how
the drugs work, the physicians are obligated to give a dosage that meets the
family’s expectations for their loved one’s comfort. That dosage may be
quite disproportionate to the discomfort the physicians expect their patient
to experience if the surrogate decision-makers’ primary concern is
minimizing the possibility of any suffering.

Here the PSM and the Way of Medicine again overlap somewhat, despite
their different starting points. In the Way of Medicine, the first question is
how can removal of the ventilator be consistent with the physician’s

commitment to the patient’s health? The second is how is removal of the
ventilator consistent with the requirements of practical reason?

Mrs. Garcia’s physicians are confident that she will die shortly after the
ventilator is removed. How can anyone, much less a physician, remove the
ventilator knowing that the patient will die as a result? Once more, guidance
comes from the rule of double effect. The physician’s commitment is to
seek to preserve and restore his patient’s health using reasonable means,
insofar as the patient grants the physician the authority to do so. Keeping
Mrs. Garcia on the ventilator provides at least a modicum of her health
insofar as it maintains her life, and maintaining her life allows for further
steps to be taken to improve her health, even if such steps do not hold much
promise in her case. Thus keeping Mrs. Garcia on the ventilator can be
reasonable as medicine.

But the ventilator’s contribution to Mrs. Garcia’s health, while real, is also
relatively minor. In her case, use of the ventilator does not make possible
further interventions to recover her lost health. Indeed, while medical
technology can keep her alive indefinitely, little to no prospect remains for
further healing. Moreover, the ventilator brings significant burdens: it is
expensive; it requires Mrs. Garcia to stay in an intensive care unit; and it is
relatively intrusive to her body, obstructing certain natural pathways of
human interaction between her caregivers and her.

While Mrs. Garcia’s physicians have some reason to maintain ventilator
support, they should also respect the health-related limits of doing so, and
the fact that her surrogates might reasonably judge that the burdens of
continuing ventilator support are disproportionate to the benefits. Those
surrogates can consistently treat Mrs. Garcia’s life and health as goods
while also judging that the ventilator should be removed in order to avoid
the burdens associated with it—expense, intrusiveness, and so on. They can
and should make that judgment in light of their own vocational
commitments, which might include honoring what they believe their mother
would have wanted—to end her days in the personal company of her loved
ones rather than in the impersonal company of machines.

In choosing to discontinue the ventilator, neither the surrogates nor the
physicians need to aim at the patient’s death. The surrogates can choose to

avoid certain burdens and to pursue a certain kind of human and personal
environment for their remaining time with Mrs. Garcia, aware that death
will likely be hastened as a side effect of seeking those benefits (including
avoiding those burdens). The physicians can accommodate the surrogates’
choice either because they share their intentions or if for some reason they
disagree with the surrogates’ judgment, because they intend to honor the
surrogates’ legitimate authority. In neither case do the physicians intend
Mrs. Garcia’s death either as a means or as an end. The surrogates and the
physicians can act reasonably here in discontinuing the use of Mrs. Garcia’s
ventilator.

Of course, different circumstances would affect our judgment. Imagine, for
example, that with two weeks more mechanical ventilation, Mrs. Garcia
would likely return to the health she enjoyed before she fell ill. Then the
burdens of mechanical ventilation for two weeks would not appear
disproportionate to its anticipated benefits. The ventilator would be seen as
ordinary treatment, and discontinuing it would be unethical. But even these
judgments depend on considerations over which the surrogates have
authority. The Way of Medicine respects that authority, allowing the
physician to cooperate with an action that the physician would not choose
herself.

Furthermore, what is true of the physicians relative to the surrogates is true
of both relative to the patient. If Mrs. Garcia were to recover decisional
capacity, she would have authority to ask that the ventilator be discontinued
even if it was thought that only two weeks more of ventilation were needed
to bridge her movement to a promising new treatment. That decision might
be wrongful, and her family and physicians should voice their concerns, but
the competent patient’s authority to refuse medical interventions is almost
absolute. Surrogates and physicians can intend to honor that authority while
accepting as side effects the consequences of a patient’s wrongful choice.

Surrogates’ authority is more constrained than patients’ authority.
Traditionally, surrogates’ decisions have been required to meet what has
been called a reasonable person standard. If a surrogate makes a request that
no reasonable person would choose (for example, removal of a ventilator
right after a major surgery, before the patient has had a chance for

anesthesia to wear off), the request will exceed the surrogates’ authority and
physicians may refuse it.

Let’s now return to the question of Mrs. Garcia’s comfort when the
ventilator is withdrawn. The physicians’ goals must remain tethered to the
norm of the patient’s health and subject to the questions of intention and
proportionality. That the patient will die soon does not justify setting these
considerations aside, though neither does the physicians’ commitment to
health mean that they must be tentative in administering medications to
relieve breathlessness. Patients who die of respiratory failure often appear
to experience profound distress from breathlessness, gasping for air as if
drowning. Such a state is not one of health. Relieving such a state would
seem to be an act required of healthcare professionals.

So a physician administers medication to mitigate breathlessness. Here we
note a story from the clinical experience of one of the authors. Dr. Curlin
was caring for a patient on a general medical service during training. The
patient, an elderly woman, had suffered a devastating stroke, very much like
the one Mrs. Garcia suffered, but instead of placing a tracheostomy, the
family asked that the ventilator be withdrawn, recognizing that the patient
would die. The patient was moved to a private room on the general medical
floor, where her family could be present while the ventilator was
withdrawn. When evaluating the patient, Dr. Curlin observed no
spontaneous respirations and no response to painful stimuli. He asked the
nurse to have a couple of doses of morphine available should the patient
appear to be suffering breathlessness or distress as she died. After the
ventilator was withdrawn, the patient did not breathe for more than a
minute. Then she began to gasp. She grimaced, and sweat broke out on her
brow. Her chest heaved, as if she was struggling to breathe but could not.
Dr. Curlin called for the morphine to be administered, but in the five
minutes it took for the nurse to access the IV and deliver the medication, the
patient had died.

This was poor medicine. Dr. Curlin should have anticipated the possibility,
even probability, that the patient would have a residual drive to breathe.
Knowing that she would likely not be able to breathe sufficiently to survive,
he should have given a dose of medication in advance that would have

relieved her air hunger, and then had medicine available to be administered
immediately, titrated to signs of such distress. Such an act would have been
medicine truly in service of mercy. An important part of the physician’s
vocational commitment is to be concerned with patient health even in life’s
final moments, and the relief of breathlessness when a ventilator has been
removed is a genuine manifestation of this commitment.

Poor medicine can also involve setting aside proportionality or embracing
impermissible intentions. Physicians sometimes start a morphine infusion
simply because a patient is expected to die, and then the infusion is titrated
for no reason other than that the patient has not died yet. To give an
example, palliative medicine colleagues of Dr. Curlin once were asked to
see a patient in the ICU who had not recovered from a major surgery. The
family asked that life-sustaining technology be withdrawn. The palliative
medicine team left recommendations for medication to relieve distress, with
dosing proportionate to what they expected would be needed. They returned
hours later to find the patient profoundly sedated on doses of narcotics and
sedatives much higher than they had recommended. When they asked about
such high dosing, the surgical team said that the family was distressed that
it was taking so long for the patient to die. This case and others like it
demonstrate physicians detaching from the norm of the patient’s health,
instead beginning to aim at the patient’s death. When medication dosing
becomes disproportionate to what is needed to relieve disabling symptoms,
something has gone wrong.

Unfortunately, the PSM conditions physicians to ignore, or even to
welcome, these departures from proportionality and an orientation to the
patient’s health. After all, the point of the PSM is to relieve, using the tools
at hand, the conditions that the patient or her surrogate suffers. When being
alive comes to be experienced as a burden, the physician’s tools can quickly
become death-dealing, opening the patient up to the expanding domain of
so-called last-resort options.

CHAPTER NINE

Last-Resort Options

In this chapter we meet patients who are not only at the end of life but
seemingly at the end of hope. What should physicians do when patients are
dying and have nothing left to look forward to except pain and misery? We
have already established that physicians have good reasons to treat pain and
other symptoms effectively, and at times to accept substantial side effects of
such treatment, including even the effect of hastening death. But some
patients want more. They want to die on their own terms, not wait for their
illnesses to bring about their death in unwanted ways. In particular, they
experience a state of profound and irreversible debility and dependence as
one that is worse than being dead. What can be done for such patients?

In the provider of services model (PSM), physicians facing such cases are
urged to consider what their proponents call “last-resort options” for
palliative care. These include encouraging the patient to voluntarily stop
eating and drinking, administering palliative sedation to unconsciousness,
and, most prominently, offering assisted suicide and euthanasia. What
makes all of these practices controversial is the question of intention: is the
patient’s death intended in these practices? If so, on the Way of Medicine,
such practices are ruled out from the start.

Not so under the PSM. Rather, clinicians pursue the goals of minimizing
suffering and maximizing quality of life without any absolute prohibitions,
not even the prohibition against killing one’s patient. At the time of this
writing, assisted suicide and euthanasia remain illegal in most US
jurisdictions; for the moment, in most jurisdictions such practices are not in
the universe of options that physicians must offer patients. But when that
changes—as it has changed in several US states, all of Canada, and several

European nations—the PSM not only permits assisted suicide and
euthanasia; it can require physicians to accommodate patients’ requests for
these options, at least by referring them to someone who will provide them.
The PSM approach centers on its commitment to use medical technologies
to bring about well-being. After all, how can a patient be said to have well-
being if he lives when he wants to die, particularly when he obviously
suffers a degraded and steadily diminishing quality of life?

When the goal of medicine shifts from helping patients who are dying to
helping patients to die, practices that hasten death no longer seem like last-
resort options. Indeed, such practices seem to follow ineluctably from
making the relief of suffering—an alternate formulation of well-being—
medicine’s first principle. Medicine aims to minimize suffering and
maximize quality of life according to the patient’s judgment and values.
The patient is suffering and experiences a poor quality of life. The clinician
has the tools to make the suffering go away by making the condition of
being alive and conscious—which makes suffering possible—go away.
Although intentionally bringing about the patient’s death would seem to
contradict the goal of preserving and restoring health, medicine is no longer
constrained by such goals. Therefore, the clinician may, and is perhaps
morally obligated to, offer the patient various means by which the patient
can bring about the end of his life.

Before we get too far ahead of ourselves in discussing “last-resort options,”
let’s consider cases that involve continuing or withdrawing nutrition and
hydration. How would the Way of Medicine approach these practices?

ARTIFICIAL NUTRITION AND HYDRATION

Nora Garcia is moved to a private room for her use of the ventilator to be
discontinued. When that is done, despite the physicians’ expectations, Mrs.
Garcia breathes on her own, so a few days after that she is moved to a long-
term nursing facility. Six weeks later she has developed a bedsore but is

otherwise clinically stable. Her family now asks that tube feeding be
discontinued.

The laws of most nations allow tube feeding, or artificial nutrition and
hydration (ANH) to be discontinued at the request of a patient or the
patient’s surrogates. The reasonable-person standard applies to the latter,
but that standard would allow physicians to remove the feeding tube in Mrs.
Garcia’s case, just as many otherwise reasonable persons elect to
discontinue tube feeding in similar cases.

According to the PSM, the physician’s obligation here is straightforward:
inform the surrogates of what can be expected with continuing or
discontinuing the tube feedings, ask them to imagine what Mrs. Garcia
would choose if she could, and then accommodate the surrogates’ choice. In
such situations, surrogates and clinicians often talk about choosing quality
of life and comfort over degradation and suffering. They might talk about
allowing the patient to die with dignity. The application of such concepts,
along with the four principles guiding the practice of medicine (autonomy,
beneficence, nonmaleficence, and justice), tends to hinge on the ideal of
authentic choice: choosing what the patient would have chosen if she were
able.

Thus, for example, if the surrogates say that Mrs. Garcia would never have
wanted to live like this, they or Mrs. Garcia’s physicians might conclude
that continuing the tube feeding violates the duty not to harm because it
forces her to endure a degraded condition, or poor quality of life. If,
alternatively, the surrogates decide that the patient would have chosen to
continue the tube feeding (believing, perhaps, “She would have wanted
everything done”), discontinuing the feeding would seem to violate the
same duty not to harm, or at least fail to fulfill the principle of beneficence
by withholding something from which the patient benefits. Again,
everything turns on what the patient would have wanted.

Of course, when the patient clearly has refused ANH prospectively, or at
present still has the capacity to refuse, the case is even clearer: the
physicians must accommodate the refusal. But what is notable, and notably

different from the Way of Medicine, is just what surrogates and clinicians
are respecting when accommodating such refusals. If the patient refuses
nutrition and hydration in order to die, then proponents of the PSM
generally suggest that the decision itself is to be honored out of respect for
patient autonomy. The thinking here is straightforward: the patient decides
whether his life is worth living. If he decides it is not, that settles the
question of what should be done, despite what seems a clearly suicidal
intention.

By contrast, the Way of Medicine holds that life is always a good, and the
complex good of life and health is the object of medical commitment.
Accordingly, a patient cannot reasonably refuse artificial nutrition and
hydration—whether by advance directive or in the moment—if his goal in
doing so is to bring about his death. Likewise, a clinician or surrogate who
cooperates in that decision in order to bring about the patient’s death is
doing something wrong—contrary both to practical reason and to the norms
of medicine.

Having said that, cooperation with the patient’s request is not entirely ruled
out. While the Way of Medicine does not ask clinicians to respect an
unreasonable choice, it does ask them to respect patients’ authority to make
such a choice. Thus, doctors are not to refuse a patient’s request to
discontinue ANH, even if the patient’s choice is unreasonable. The doctors
cooperate in order to honor the patient’s legitimate authority, however, not
to bring about the patient’s death.

Moreover, patients can refuse ANH uprightly. A patient might, for example,
decide in advance not to ask certain forms of care of their future caregivers,
out of concern for those caregivers. Or, sensitive to the limits both of health
and of medicine, the very elderly might ask not to be encumbered with
tubes when their time is already short. Both of these reasons for setting
limits to medical interventions are legitimate, and generally where the
possibility of an upright refusal exists, the patient’s legitimate exercise of
authority is to be respected even if one strongly suspects that that authority
is being misused in a particular case.

Thus, when it comes to refusing artificial nutrition and hydration, the Way
of Medicine overlaps with the PSM in acknowledging a patient’s authority

to refuse medical interventions, including ANH, and it contradicts the PSM
in rejecting suicide and any intentional cooperation with it.

Mrs. Garcia’s case differs from the cases just described, however, insofar as
she did not request prospectively that she not receive artificial nutrition and
hydration. What should the physicians do? They and Mrs. Garcia’s
surrogates should deliberate in the same way that they deliberated about
removing the ventilator. The rule of double effect still applies, though
among proponents of the Way of Medicine, some disagree with the notion
that tube feeding in a case like Mrs. Garcia’s can reasonably be considered
to have a burden that is disproportionate to the benefits it provides. Further,
some worry that under the pretense of removing a burdensome intervention,
those who want to discontinue ANH for Mrs. Garcia are actually making
the removal a means of bringing about her death.

Recall that the tube feeding may be discontinued if it is disproportionately
burdensome—that is, extraordinary. This presupposes that real benefits
accrue to continued feeding, for if feeding becomes strictly futile (e.g., if
the patient develops a bowel obstruction), it would be unreasonable for
physicians to even offer to continue it. But in Mrs. Garcia’s case ANH helps
to maintain her life and health (if there is no life, there is no health, and vice
versa). These are genuine goods for all human beings, and Mrs. Garcia
remains a human being.

Of course, some people object that Mrs. Garcia’s life and health are of value
only insofar as they make it possible for Mrs. Garcia to pursue other goods.
If that is true, ANH is no benefit to her, because her life and health are of no
further instrumental value. This claim is incompatible with the requirements
of practical reason, however, for all the basic goods are intrinsically good
for all human beings. It is also incompatible with a straightforward
inference from a basic claim. If we consider ourselves as having intrinsic
value and acknowledge that we are living animal organisms, our biological
lives must be of intrinsic value, for that which constitutes the existence of a
being with intrinsic value must itself have intrinsic value. So we take this
objection to be misconceived: Mrs. Garcia’s life and health remains good in
itself, even if she can realize that good only to a minimal degree.

Feeding Mrs. Garcia also realizes the good of solidarity—a form of
friendship, of being humanly and personally connected to another, willing
his or her good for its own sake, and engaging in care for them when they
are in need. Some actions clearly would violate such solidarity: dressing
Mrs. Garcia up like a clown for the amusement of others, violating her
physical integrity, and the like. Caring for her—and feeding is a primordial
form of caring—realizes the good of friendship even if Mrs. Garcia does
not consciously experience it.¹

Does ANH bring burdens? Yes. Tube feeding brings costs as well as risks of
infection, aspiration, and other clinical complications. Whether Mrs. Garcia
suffers as a result of her feeding tubes is hard to say. The burdens ANH
imposes on her seem relatively light, if not trivial. However, some patients
who are not in Mrs. Garcia’s circumstances face further burdens. Patients
with Alzheimer’s disease, for example, are sometimes distressed by feeding
tubes and tear them out; preventing their doing so can require chemical or
physical restraints, which impose significant burdens of their own. Such
burdens could warrant withdrawing the tubes to avoid these
(disproportionate) burdens. Likewise, if a patient is actively dying or is
otherwise unable to assimilate nutrition, the benefits of feeding will not be
proportionate to the burdens, and feeding may be discontinued. But in Mrs.
Garcia’s case, it seems less clear that continuing ANH brings
disproportionate burdens.

ANH should not be discontinued with the intention of bringing about Mrs.
Garcia’s death, and this principle raises a particular difficulty for one
response to the question of proportionality. In that response, the surrogates
or physicians might note that the burdens of care for Mrs. Garcia are quite
significant: she is in a nursing facility, which is expensive, and watching
and visiting her in this state is emotionally and physically taxing for her
family, while her wound care is tedious for the nurses. Surely these burdens,
one might argue, are disproportionate to the minor benefit of continued life
in a state of radically diminished health.

The practical reasoning advocated in the Way of Medicine looks to the
burdens and benefits of a particular intervention to ask whether there is
proportionality or disproportionality between the good and bad effects of

that intervention. But here, for Mrs. Garcia, the intervention in question is
tube feeding. We have identified the benefits (life and health) and burdens
(cost, risk of infection) of that intervention. Discontinuing tube feeding
removes, in itself, precisely those burdens; it does not, as such, remove the
overall costs of hospital care or the overall emotional and physical burdens
of caring for Mrs. Garcia. What removes those burdens is Mrs. Garcia’s
death. So the choice to withdraw ANH in order to end those burdens seems
to involve intending Mrs. Garcia’s death. Such a choice is impermissible on
the Way of Medicine.

Deliberating reasonably in this case requires focusing on the benefits and
burdens of the tube feeding itself. If the benefits of ANH are proportionate
to the burdens of ANH, the burdens should be accepted. That said, it
remains the case that one of us (Tollefsen) thinks that Mrs. Garcia should
certainly be fed in this case (though she might be brought home if that
would alleviate the other burdens of her care), while the other (Curlin)
believes that the vocational shape of Mrs. Garcia’s life may in some cases
be better honored by keeping her as free from technological interventions,
including feeding tubes, as possible. So Curlin believes one might
reasonably judge that ANH, in Mrs. Garcia’s case, no longer promises
benefits proportionate to the burdens of ANH itself (however minor those
appear to be). Disagreement is not impossible for those committed to the
Way of Medicine.

We return now to the last-resort options, the first of which also involves
nutrition and hydration.

LAST-RESORT OPTIONS

Abe Anderson is declining. His oncologists stop his chemotherapy. He
elects to receive hospice care at home. His pain worsens, requiring steadily
increasing doses of morphine. He manages to stay awake most of the time.
The hospice physician comes to see him at home a few weeks later. In their
conversation, Mr. Anderson notes, “I don’t want to languish, doc. I want to

go out on my own terms. What can I do if I don’t want to go on any
longer?”

Voluntary Cessation of Eating

Abe’s question invites his physician to offer last-resort options. The first
such option is for Abe to voluntarily stop eating (and/or drinking). In that
case, Abe’s remaining days would be few, and with adequate morphine
those days could be made relatively painless. But as we already noted, this
choice includes a lethal intention: Abe would forgo nutrition and hydration
in order to hasten his death, an intention ruled out by the demands of
practical reason. The Way of Medicine likewise rules out recommending or
suggesting such an approach, even if it would be wrong to force nutrition
and hydration on a patient who had given up on eating. So the physician
should not offer Abe the opportunity to starve himself to death, as if that
were a legitimate medical option.

This case must be distinguished from an otherwise similar scenario. Patients
who are dying often begin to withdraw from food and water. As we have
noted, in the final days of a terminal illness, nutrition often cannot be
assimilated, but even somewhat before this point, patients with advanced
illness can find themselves with no desire to eat and even with revulsion at
the thought of food. Turning away from food under such circumstances
does not seem to us a suicidal choice, but rather a choice to avoid
something that no longer seems enjoyable or meaningful in the way it once
did. If death is hastened by this choice, that is a proportionate and morally
permissible side effect.

Sedation to Unconsciousness

A second “last resort option” would be to sedate Abe so that he lives out his
last days free of any conscious suffering. In what has come to be called
palliative sedation to unconsciousness, formerly known as terminal
sedation,² physicians intentionally sedate patients to the point of
unconsciousness and keep them unconscious until they die. This differs
from what is called proportionate palliative sedation, in which sedatives are
used for the purpose of relieving anxiety, agitation, breathlessness, or other
symptoms, and diminished consciousness is foreseen as a side effect but not
intended.

We have written at length elsewhere about the ethics of palliative sedation,³
but we first want to emphasize that the Way of Medicine supports
proportionate palliative sedation. As long as the clinician aims only to
relieve health-diminishing symptoms and has proportionate reason to accept
unconsciousness as a side effect (thus satisfying the rule of double effect),
the sedation is morally permissible, even in cases in which it is expected
that sedation will continue until the patient dies. Indeed, physicians cannot
act to relieve health-diminishing symptoms except by accepting some level
of sedation as a side effect of their efforts. Almost all of the medications
used to relieve pain and other symptoms cause sedation as a side effect.
This is true of narcotics, of course, but also of medications to relieve
anxiety, seizures, delirium, nausea, and itching. To treat sedation as a side
effect aligns with the fact that patients and their families generally do not
want their sensoriums clouded or their capacities to think, talk, and pursue
the goods available to them blunted, but most will accept these losses if
they are side effects of efforts to relieve disabling symptoms, particularly at
the end of life.

We also note that proportionate palliative sedation can relieve disabling and
distressing symptoms in nearly all if not all clinical circumstances. In his
book Dying Well: Peace and Possibilities at the End of Life, Ira Byock, a
seasoned hospice physician, describes a case in which he came finally to
intentionally sedate a dying patient to unconsciousness because the patient’s
severe pain had proven refractory to every other treatment modality.⁴ Those
who advocate for sedation to unconsciousness as a form of physician aid-in-
dying often invoke cases like the one Dr. Byock described, just as advocates
for physician-assisted suicide and euthanasia invoke cases of excruciating

and untreatable pain. But these appeals are red herrings. Dr. Byock noted
that the case he described was the only such case he had experienced in
more than fifteen years of caring for dying patients.⁵ One of the authors of
this book (Curlin) has practiced hospice and palliative medicine for more
than ten years and has never encountered a patient whose pain or other
disabling symptoms could not be relieved under the norms of proportionate
palliative sedation. Last-resort options in general, and palliative sedation to
unconsciousness in particular, are used much more commonly to relieve a
type of suffering that is quite distinct from the pain experienced by Dr.
Byock’s patient. They are used to relieve existential suffering.

Sedation to unconsciousness to relieve existential suffering contradicts the
norms of the Way of Medicine. Consider first the character of existential
suffering, and then how the capacity for wakefulness relates to human
health. Suffering is, to some extent, inevitable in dying, for dying is in its
nature an evil—not a moral evil, but a privation of something always and
everywhere good: namely, human life and, more specifically, the life of a
person. While death is not to be feared above all things, and while we
believe that hope in eternal life should accompany death, nevertheless,
death is not good, and suffering itself is the experience of that which is not
as it should be.⁶ So the experience of illness and the prospect of imminent
death usually bring suffering, whether or not the patient experiences pain or
other symptoms. Pain and other symptoms heighten suffering in their direct,
noxious effects on conscious experience and also insofar as they disrupt our
ability to do what humans otherwise do when they are healthy. Moreover,
patients who are dying often experience alienation from themselves, their
friends and family, and even God. All of these bring suffering.

Existential suffering is the cognitive awareness of that which is not as it
should be. At the end of life, a patient may experience such suffering
through revulsion at the threat of death, regret at missed opportunities and
botched choices, sorrow over failed or ruptured relationships, or fear of the
divine. These are real problems and real forms of suffering. As such, they
require choices, attempts to maintain or restore what harmony is possible at
the end of life: acceptance of death, repentance of sin, reconciliation with
loved ones, and peace with God.

Sedation to unconsciousness cuts short all of these possible responses to
existential suffering. While perhaps not a choice for death as such, it is a
choice for a kind of moral death, putting oneself existentially out of reach
of these and all other possibilities. Such possibilities can be dramatic: those
who have read the novel Brideshead Revisited (or seen the miniseries) can
call to mind Lord Marchmain’s literal deathbed conversion, which restored
him both to his religion and, in various ways, to his family.⁷ Thus he was
restored to the forms of harmony and integrity available to him even at the
very end of life. But integrity and harmony (with reality, with one’s self,
with others, with God) are basic goods, and the opportunity to pursue them
should not be discarded without exceptionally strong reason. Sedation to
unconsciousness to avoid existential suffering, rather than to treat refractory
and crippling pain or other symptoms, thus seems to us incompatible with
being fully open to human goods.

Consider now how the capacity for wakefulness relates to human health.
Making a patient permanently unconscious diminishes the patient’s health;
that seems an uncontroversial point insofar as the capacity for wakefulness
is an expression of health. Here we must distinguish the state of suppressed
consciousness from the state of sleep, in which the individual is capable of
arousal. We also must distinguish keeping a person unconscious until he
dies from sedating him temporarily, as physicians often do as part of their
efforts (e.g., surgery) to preserve or restore health. It seems that in most
cases, and certainly in the case of existential suffering, physicians who
intentionally and permanently sedate patients to unconsciousness thereby
contradict the purposes of medicine.

In a very rare case, however, palliative sedation to unconsciousness would
be permissible. In that scenario, the patient would suffer, or be expected to
imminently suffer, such a severe form of altered—diseased, unhealthy,
disabling—consciousness that it would make sense to cut off this unhealthy
consciousness in the same way it makes sense sometimes to cut off a
severely diseased (say, gangrenous) limb. In such a case, we can say that the
patient’s health is diminished by virtue of losing consciousness or a limb,
but his health is less diminished without the consciousness or the limb than
with it. A part can be sacrificed for the health of a whole. Put differently, to
the extent that suppressing consciousness allows the organism to relax from

a state of high physical and psychic stress, such unconsciousness might be
an expression of health, albeit of a radically diminished sort. Such sedation
could continue until death if a return to consciousness is expected to bring a
return to high levels of distress refractory to proportionate palliative
sedation.

While such cases are exceedingly rare, Dr. Byock’s patient may have met
this criterion, and in Dr. Curlin’s experience, some cases of agitated
delirium (often called terminal delirium) at the end of life also may meet
this criterion. Still, we caution against the tendency to amputate
consciousness too readily, even in such cases. That tendency seems driven
by pressures and temptations—since patients who are unconscious require
less of the physician’s attention—to make the appearance of suffering go
away.⁸

Physician-Assisted Suicide and Voluntary Euthanasia

In the final last-resort options, a physician might prescribe a lethal dose of
some medication in order to help Abe take his own life (physician-assisted
suicide) or, alternatively, perhaps because Abe is too weak to do so himself,
the physician might administer the lethal dose himself (voluntary
euthanasia). We refer to both of these options as physician aid-in-dying.

Let us begin our discussion of physician-assisted suicide and voluntary
euthanasia not with our fictional case studies involving Mr. Anderson or
Mrs. Garcia but with a real case, one of the most influential in making the
public argument for physician aid-in-dying in our time.

Brittany Maynard was diagnosed with brain cancer in January 2014; she
was twenty-nine years old. In the remaining eight months of her life, she
became a prominent public advocate for legalization of physician-assisted
suicide. She moved from California to Oregon and, according to a plan she
had specified in advance, died on November 1 of that year after ingesting a
lethal physician-prescribed drug cocktail. Unquestionably, as a young,

attractive, and tragic face of the right-todie movement, Ms. Maynard, as
Arthur Caplan put it, “shifted the optics of the debate.”⁹

Ms. Maynard’s story illustrates a pattern: those who seek physician aid-in-
dying are rarely driven by the direct experience of refractory pain or other
symptoms.¹⁰ At the time she committed suicide, Ms. Maynard was not
experiencing symptoms beyond the reach of conventional palliative
medicine, nor are such symptoms expected from a brain tumor. Rather, as
she said, she chose to end her life on her own terms in order to avoid the
prospect of further debility and decline, in which she might “suffer
personality changes and verbal, cognitive and motor loss of virtually any
kind.”¹¹

Ms. Maynard’s desire to avoid debility and dependence reflects the pattern
found in official reports from Oregon and Washington State, where nine out
of ten patients requesting assisted suicide have reported being concerned
about “losing autonomy” (91.5 percent) and being “less able to engage in
activities making life enjoyable” (88.7 percent).¹²

The problem to which assisted suicide and euthanasia pose solutions, then,
is not uncontrolled pain. In Oregon, only one in four patients (24.7 percent)
have reported even “concern about” inadequate pain control,¹³ and at no
time in history have physicians and patients had greater access to effective
tools for treating pain and other distressing symptoms, tools that can be
deployed aggressively under ethical norms that have guided medicine for
ages.

Rather, the problem to which aid-in-dying poses a solution is loss of control
—the desire to sustain self-determination and autonomy in the face of
debilitating illness. In a piece in the Journal of the American Medical
Association, Dr. Timothy Quill and colleagues wrote, “Patients with serious
illness wish to have control over their own bodies, their own lives, and
concern about future physical and psychosocial distress.”¹⁴ Brittany
Maynard put the point bluntly in her online manifesto: “I want to die on my
own terms.” Seen in this light, the movement toward physician aid-in-dying
is the culmination of the PSM approach to medicine and medical ethics.

Ms. Maynard then added, “My question is who has the right to tell me that I
don’t deserve this choice?” That is a powerful question in our day. The
former Hemlock Society is now called “Compassion and Choices”
(emphasis ours).¹⁵ The California law legalizing assisted suicide was called
the End of Life Option Act (again, our emphasis).¹⁶ When Governor Jerry
Brown signed it, he said he did not know if he would avail himself of
assisted suicide, but “I wouldn’t deny that right to others.”¹⁷ Choice looms
large.

But what kind of choice is Ms. Maynard and others like her being denied if
physicians refuse to hasten their deaths? Ms. Maynard already had the right
to refuse life-sustaining treatment. She had the right to proportionate
palliation of her symptoms even if death were hastened as a side effect. She
had the means and capacity to cause her death by numerous methods that do
not involve physicians and that are equally if not more efficient and
effective than ingesting an overdose of pharmaceuticals. Why is it so
essential that she and others have physicians, in particular, cooperate in
helping them kill themselves?

That physicians are being asked, or even required, to cooperate shows that
“the right to choose” is, as the late Robert Burt noted, “radically incomplete
as a justification for physician assisted suicide.”¹⁸ The right to choose has
been transformed into a positive entitlement to have others help bring about
what has been chosen—and not just any others, but medical professionals
specifically. The physician aid-in-dying movement portends large-scale
changes for the medical profession that will mark the definitive end of the
Way of Medicine and the advent of a more authoritarian form of the PSM.

We discuss the PSM’s exclusivist and authoritarian tendencies in chapter
10. Here we consider three questions that are central to evaluating the
proposals for physician aid-in-dying. First, and most generally, how do the
requirements of practical reason bear upon the practice of physician aid-in-
dying? Second, how is physician aid-in dying related to the ends of
medicine? And third, what will physician aid-in-dying do to patient trust?

The Requirements of Practical Reason and Killing at the End of Life

Practical reason’s judgment on the question of physician aid-in-dying is in
one sense quite straightforward. All the suggested forms of this practice,
including physician-assisted suicide and voluntary euthanasia, involve
intentional killing: the patient’s death is the means to relieve her suffering
or is the satisfaction of her desire to maintain control. But it is always
wrong to intend the death of an innocent person. So one may not reasonably
kill oneself, kill another, or help another to kill him- or herself. So far, then,
the various forms of aid-in-dying seem little different morally from elective
abortion.

But killing at the end of life differs from abortion in an important way. No
abortion ever takes place with the consent of the unborn child, so except in
vital conflict cases, such killing not only violates the moral norm that basic
goods are not to be intentionally damaged or destroyed, but also the norm
of fairness. (As our discussion of Judith Jarvis Thomson showed, the latter
norm is usually violated even when the former norm is not.) In contrast—
and the aid-in-dying movement makes much of this fact—those who seek
physician assistance in death generally actively want and choose to die.
While physician aid-indying clearly violates the norm against intentional
killing, physician aid-in-dying for competent adults does not obviously
violate the norm requiring fairness.

As a matter of clinical ethics, the norm requiring fairness is irrelevant
insofar as killing the innocent is always wrong, and no morally upright
physician or patient would participate in such killing. But fairness is a
central part of justice, and justice is the paradigmatic social virtue. Political
states and professional institutions are structured around the demands of
justice. Even though an act might be morally wrong, if it is not a matter of
injustice, the state is unlikely to show much concern. People arguing that
the state and the medical profession should forbid physician aid-in-dying
make a stronger case if they show the practice to be not only wrong but
substantively unjust.

We believe this challenge can be met. Legalizing physician aidin-dying is
rightly a matter of political concern and concern for the medical profession,
especially if it threatens to reshape medical practice in ways that portend
harms to many unconsenting patients. Insofar as physician aid-in-dying
poses such a threat, strong reasons persist to maintain vigorous legal and
professional restrictions on the practice and to refuse to give physicians a
right that no other citizen possesses: the right to intentionally cause the
death of an innocent person.

The End of Medicine and Aid-in-Dying

The Way of Medicine also returns a quick answer to the question of
physician aid-in-dying. The end of medicine is health, and the physician
professes to seek health in patients. Physician-assisted suicide and
voluntary euthanasia involve actions that intend the death of the patient, the
first by means of cooperation with the patient’s suicidal intention, the
second by a direct action of the physician intended to end the patient’s life.
Few acts seem more distinctly contrary to the end and the vocational
commitment of medicine, and for this reason alone, they have no place in
the profession. Nor should physicians be expected, much less required, to
aid or facilitate such actions, even by providing referrals.

For a profession in good order, this point would suffice. But the question
remains: how are concerns of justice and fairness implicated here? To
address this question, we turn to a further, deeply related, objection to
physician aid-in-dying: these practices threaten to erode trust and
trustworthiness—central virtues of the physician-patient relationship,
without which the profession cannot long continue.

Trust

Robert Burt, quoted earlier, also noted, “The confident assertion of the self-
determination right leaves unacknowledged and unanswered a crucial
background question: who can be trusted to care for me when I am too
vulnerable and fearful to care for myself?”¹⁹

His point is well taken. For every Abe Anderson and Brittany Maynard who
wants a physician to help them end their lives, physicians are called to care
for numerous other radically diminished patients who, along with their
families, count on physicians to care for them, seeking to preserve and
restore the health that remains insofar as reasonably possible. An example
from Curlin’s practice makes the point:

Dr. Curlin was asked to see a patient in the emergency room.²⁰ The patient,
Mr. Roberts, had advanced dementia; he had not spoken in three years. He
was brought to the hospital by his brother and his niece, who for several
years had cared for him at home. The emergency physician’s initial
evaluation made clear that Mr. Roberts had a serious pneumonia and was
beginning to suffer septic shock and respiratory failure. After Dr. Curlin
spoke briefly with Mr. Roberts’s family members, they agreed with his
proposal to give the patient antibiotics, oxygen, and other supportive
therapy but to forgo mechanical ventilation, even if Mr. Roberts came to the
point of not being able to breathe on his own. Dr. Curlin then asked the
patient’s brother and niece if they had ever considered hospice care for Mr.
Roberts. Both shook their heads and said adamantly, “We are not interested
in hospice.” “Why is that?” Dr. Curlin asked. They responded that what
they had seen indicated that hospice too often forgoes any effort to provide
medical care for patients, instead focusing only on giving potent drugs like
morphine and sedatives, and thereby hastening patients’ death.

Mr. Roberts’s family members’ concern is one that Dr. Curlin has heard
voiced by numerous other patients and family members in Durham, North
Carolina, and on the South Side of Chicago, and it highlights a question that
physicians must consider: with respect to physician aidin-dying, which of

the following should physicians care about most: maintaining the trust of
those who, like Mr. Roberts and his family, already experience the debility,
dependence, and suffering that advanced illness brings or empowering those
who, like Brittany Maynard, seek through assisted suicide to avoid such
debility, dependence, and suffering?

That was not a rhetorical question for Mr. Roberts’s family. Indeed, like too
many others, they had come to the conclusion that some physicians who
wield the tools of palliative medicine are not to be trusted because such
physicians have so prioritized relieving suffering that they fail to do what
patients count on physicians to do: use reasonable means to preserve the
health and lives of the patients. How much less likely would Mr. Roberts’s
family be to entrust him to a physician or group of physicians that is in the
habit of practicing assisted suicide or euthanasia or encouraging people to
stop eating or to stop feeding their loved ones? We doubt their worries
would be assuaged upon hearing that the physicians do so “only for those
who choose” these options.

Physicians cannot practice hastening or causing the deaths of their patients
without undermining the trust on which the practice of medicine depends.
This insight is not new. Physicians who care for patients with advanced
illness have long known that everyone will at times be tempted to do away
with suffering by doing away with the patient. To militate against that
temptation, physicians have for more than two millennia sworn in the
Hippocratic Oath, “I will neither give a deadly drug to anybody who asks
for it, nor will I make a suggestion to this effect.”²¹ The American Medical
Association has maintained since its founding, “Physician assisted suicide
is fundamentally inconsistent with the physician’s professional role.”²² The
World Medical Association has opposed assisted suicide and euthanasia
since the association was formed and issued the Declaration of Geneva just
after the Second World War. Indeed, insofar as physicians enjoy the trust of
patients made vulnerable by illness, it is because, since Hippocrates, at
least, they have maintained solidarity with those who are sick and disabled,
seeking only to heal and refusing to use their skills and powers to do harm.
That is why physicians have refused to participate in capital punishment, to
be active combatants, or to help patients commit suicide.

Importantly, this boundary against intentionally causing a patient’s death
not only gives patients a reason to trust physicians but also gives physicians
the freedom they need to do their work. For example, Dr. Curlin was able to
tell Mr. Roberts’s family members that as a physician he is committed to
never hasten or cause a patient’s death intentionally. This boundary creates
a space in which he and other physicians can act decisively to palliate
distressing symptoms—for example, by using morphine to alleviate the
apparent breathlessness that Mr. Roberts was experiencing or sedatives to
relieve a state of restlessness and agitation in Abe Anderson. Without this
boundary, Mr. Roberts’s family has good reasons to worry that the
morphine that leads to sedation is dosed not in proportion to the pain or
breathlessness of their loved one but in an effort to hurry along the dying
process.

To return to the question we posed above: which should be most important
to physicians—maintaining the trust of those who, like Mr. Roberts and his
family, already experience the debility, dependence, and suffering that
advanced illness brings or empowering those who, like Brittany Maynard,
seek through physician aid-in-dying to avoid such debility, dependence, and
suffering? The witness of physicians and patients through the centuries and
into the present has affirmed that we cannot have it both ways. But the
question is central to determining the practice of medicine into the future.

At the heart of medicine is solidarity with those who are diminished in
health, disabled in body, and therefore most dependent on trustworthy
professionals devoted to their care. Physicians maintain solidarity with
those who, to borrow Ms. Maynard’s terms, suffer “verbal, cognitive and
motor loss of virtually [every] kind,” whether from developmental
disabilities, traumatic injuries, dementia, or other debilitating chronic
conditions. The countless patients who live with such conditions display a
truth that Brittany Maynard could not see and that those suffering advanced
illness may struggle to keep in view: debility and dependence do not render
lives not worth living; human dignity does not require living or dying on
one’s own terms.

In a culture that emphasizes success and productivity, youthfulness and
beauty, autonomy and control, such trust becomes obscured. The public

images of Ms. Maynard made it conspicuously obvious that she possessed
all of those when her disease struck, and her statements made it clear that
she saw a condition in which these were lost as one worse than death. Not
incidentally, those who advocate for and avail themselves of assisted
suicide are overwhelmingly white, well-off, and accustomed to being able-
bodied. According to official reports, of the 1,083 people who died in
Oregon by assisted suicide prior to January 19, 2018, only 1 was African
American (statistically, one would have expected at least 20, as 2.1 percent
of Oregon’s population is African American, according to the US Census).²³
In Washington State’s March 2018 report, fewer than 4 percent of deaths by
assisted suicide (from 2015 to 2017) were nonwhites, whereas 20 percent of
the population was nonwhite.²⁴ Mr. Roberts’s family, like most of Dr.
Curlin’s patients in Chicago and Durham, was African American. A
population that already has experienced itself as vulnerable is more likely to
see the practice of physician aid-in-dying not as a boon but as a threat.²⁵

If “verbal, cognitive, and motor loss” renders life not worth living, you
might think that disability groups would welcome physicians hastening or
causing the deaths of those who so choose. But the opposite is the case.
Disability groups overwhelmingly oppose assisted death. The prominent
advocacy group Not Dead Yet speaks for many in arguing that “it cannot be
seriously maintained” that legalization of assisted suicide will not lead to
“inappropriate pressures from family or society” for people to end their
lives. The group contends that “assisted suicide laws ensure legal immunity
for physicians who already devalue the lives of older and disabled people
and have significant economic incentives to at least agree with their
suicides, if not encourage them, or worse.”²⁶

To summarize, under the approach we propose, assisted death is
impermissible, first because it is never reasonable for anyone to kill the
innocent or to help the innocent kill themselves. Assisted death is
impermissible for physicians a fortiori, because killing contradicts the very
nature of the practice of medicine and its orientation to the patient’s health.
If anyone is to help people take their lives, let it not be physicians. But even
if these time-tested reasons have lost their grasp on our moral imaginations,
it should be clear that it is unjust to purchase yet another choice for those

accustomed to living life on their own terms at the cost of betraying
physicians’ distinctive solidarity with, and thereby undermining the trust of,
those who live under the terms of illness and disability that they have not
chosen, but with respect to which they should be able to count on
physicians’ care.

The question of trust points to the importance—not just for the medical
profession, but also for society and law—of maintaining with strictest
fidelity the norm against permitting doctors intentionally to kill their
patients. The profession of medicine is socially of great value: it ensures
that the good of those whose health is compromised will be pursued based
on the solidarity of the healer and the patient. But that relationship remains
unequal, and that inequality contributes to the patient’s vulnerability.
Clinical ethicist Richard Zaner has gone so far as to wonder what keeps
physicians from acting like Plato’s Gyges. When Gyges discovered a ring
that made him invisible, he immediately killed the king and seduced his
wife, taking advantage of his power in the assurance that he would not be
caught.²⁷

Zaner points to the importance of trust as a constitutive virtue for the
medical profession, one without which there simply would be no such
profession. Given the deep and abiding importance of medicine—we will
all be sick, we will all be vulnerable, and we will all die—it is imperative
that this fundamental virtue be maintained. And that requires, we might say,
a medical-moral ecology that upholds the virtue and makes its continued
existence possible. Such an ecology requires that the norm against
intentionally harming or killing be maintained in the medical profession
with all the strictness suggested by the Way of Medicine. That norm is the
touchstone of medicine.

CHAPTER TEN

Conscientious Medicine

Doctors often refuse patients’ requests—a fact about the practice of
medicine so familiar that it is easy to overlook—even when patients request
interventions that are legal and permitted by the medical profession.

Doctors’ refusals are neither new nor infrequent, and only a small minority
occasion any controversy. Surgeons refuse to operate when they believe a
surgery is unlikely to succeed. Physicians refuse medications when they
believe the medications are unlikely to be helpful. Clinicians refuse
requested interventions because of concerns about safety or efficacy, and
they refuse because of less tangible concerns that are no less real. Some
pediatricians refuse to supplement the growth hormones of boys who are
short because of concerns about crossing a line between treatment and
enhancement. Some primary care physicians at times refuse costly workups
for what they believe are psychosomatic syndromes out of concern for their
colleagues’ time and other medical resources. Obstetrician-gynecologists
who will abort fetuses with lethal congenital anomalies may refuse to abort
those with Down syndrome or cleft palates out of concern about societal
attitudes toward those with disabilities or those who are female out of
concern about sexism. Physicians refuse patients’ requests even when such
requests are informed, even when patients meet some published criteria for
the intervention in question, and even when physicians are aware that some
or even most of their colleagues would disagree with their refusals.

In recent years, however, controversy has erupted over the issue of
physicians’ refusing to provide or facilitate patients’ access to certain
morally contested interventions, such as abortions, physician-assisted
suicides, or surgical modifications of secondary sex characteristics (gender

transition services). When physicians refuse such interventions, many now
argue, they are letting their personal values interfere with their professional
obligations.¹ A recent essay in the New England Journal of Medicine by
Ronit Stahl and Ezekiel Emanuel illustrates the point: Stahl and Emanuel
assert that patients have a right to choose the healthcare services they need
for their own well-being, and physicians have a corollary obligation to
accommodate the patients’ choices, either by providing the requested
interventions directly or by referring the patients to doctors who will.²

Such claims are starting to gain the force of policy in some jurisdictions.
Historically, the medical profession has given wide latitude to physicians’
discretion in areas of disagreement. Professional codes have consistently
stated that physicians are not obligated to satisfy patients’ requests for
interventions that the physicians believe are not in the interest of the
patients’ health. In 2015, however, Ontario’s College of Physicians and
Surgeons issued a rule requiring physicians to “take positive steps” to make
“effective referrals” for all legal interventions that a patient might request,
including euthanasia. The college’s working group concluded that there is
“no qualitative difference” between euthanasia and other “health care
services.”³ In 2016, the Illinois General Assembly revised a decades-old
law that previously had prevented employers from discriminating against
healthcare workers who refused to engage in practices to which they had
principled objections. The new version requires employees to at least make
referrals.⁴ In 2017 Sweden’s Labor Court ruled that clinics can lawfully
refuse work to nurse midwives who refuse to perform abortions.⁵ If
physicians have personal objections to some interventions, the reasoning
goes, they must avoid areas of medicine in which those interventions are
likely to be requested.

Something is right about all of this. After all, as Stahl and Emanuel put it,
physicians are not conscripts. No one is compelled to become a physician,
and in becoming a physician, one willingly takes on responsibilities that go
with the role. Surely the profession and the public can hold physicians to
fulfill their professional responsibilities or, as Stahl and Emanuel put it,
their “role morality.”⁶ We would not countenance teachers who refuse to
grade their students’ work or attorneys who refuse to represent their clients

before the justice system. Why would we allow physicians to refuse what
patients request?

Yet the boundaries of what we accept and what we reject where
professional refusals are concerned clearly center on answers to the
following questions: what is the profession for, and what are the obligations
that come with one’s profession? Teachers are allowed and even expected to
refuse requests of students if those requests are irrelevant or run contrary to
the purposes of teaching. The same is true for lawyers and their clients.

The same is also true for medicine, yet medicine is, as we have argued
throughout this book, in the grip of a conflict between two radically
different ways of answering these questions, and debates about
conscientious refusals indicate that the profession of medicine cannot
continue indefinitely with these two contradictory construals of its purpose.
The issue of conscientious refusals brings the rivalry and tension between
the PSM and the Way of Medicine to a head. Physicians face a choice, and
the stakes are high. Insofar as their profession embraces the PSM,
physicians’ consciences threaten their patients’ well-being and must be
suppressed. Unfortunately, by suppressing conscientious practice, the PSM
reduces medicine to a demoralized job and augurs the end of medicine as a
profession. Therefore, we encourage physicians to reject the PSM and
recover the profession’s orientation to their patients’ health as a genuine
good. This commitment to their patients’ health gives physicians a
reasonable standard for discerning which requests should be accommodated
and which refused.

THE PROVIDER OF SERVICES MODEL AND PHYSICIANS’
REFUSAL

Abe Anderson’s physician refuses to prescribe antibiotics.

Cindy Parker’s physician refuses to refer her for an abortion.

In the PSM, informed consent gives way to informed choice: patients
choose, physicians provide. A physician may refuse to perform
interventions that are technically infeasible, illegal, or unavailable and may
refuse interventions that are futile with respect to the reason for which the
patient seeks the intervention. But if these threshold conditions are met, the
patients’ choices are to be accommodated. Principles can be brought to
bear, of course, and utilities can be measured in an effort to maximize them.
The physician can also advert to “accepted clinical and professional
norms.” Only the patient, however, is in a position to balance and specify
the relevant principles or to weigh the relevant utilities in order to
determine what the patient’s well-being requires. Moreover, according to
the PSM, the central clinical and professional norm is putting patient well-
being first; personal scruples cannot get in the way of a patient’s receiving
what she genuinely believes she needs.

This idea of patient well-being plays a central role in the PSM. When
proponents of the PSM criticize conscientious refusals, they consistently
refer to the patient’s well-being rather than to the patient’s health. “Health
care providers,” write Stahl and Emanuel, “have a primary interest: to
promote the well-being of patients.”⁷ And again: according to the American
Congress of Obstetrics and Gynecology (ACOG), “Providers” have a
“fundamental duty to enable patients to make decisions for themselves.”⁸
Under the PSM, medical professionals are providers whose goal is to do
what is conducive to patients’ well-being. This defines what Stahl and
Emanuel call the physician’s “role morality.” Adhering to that morality
“means offering and providing accepted medical interventions in
accordance with patients’ reasoned decisions.”⁹

Given all of this, we might expect proponents of the PSM to condemn both
of the above refusals. Curiously, that is not what happens. True, Mr.
Anderson and Ms. Parker both request interventions that are feasible, legal,
and available, and neither intervention is futile with respect to the patient’s
goals. Moreover, Abe and Cindy both believe their well-being requires the

interventions they request. Abe understands why the physician does not
recommend antibiotics, but he wants the prescription in order to satisfy his
wife and to reduce the (albeit small) risk of his missing more days of work.
Cindy understands why many find abortion morally problematic, but she
wants the abortion in order to preserve the future that she believes she will
lose if she carries the pregnancy to term. Despite these similarities, only the
physician’s refusal of Cindy’s request typically raises the ire of those who
criticize conscientious refusals.

How can this be? On the Way of Medicine, each refusal may be justified
insofar as it is grounded in a judgment that what is requested does not serve,
or indeed is contrary to, the end of patient health. How, though, can the
PSM distinguish between the two cases? It does so by introducing and
leaning heavily on a new distinction: between refusals based on
professional reasons and refusals based on personal reasons. According to
the PSM, the physician who refuses Abe’s request for antibiotics is justified
because the physician refuses for medical or professional reasons and
thereby upholds the physician’s “role morality.” In contrast, the physician
who refuses Cindy’s request is condemned for allowing personal and
private concerns to intrude on what should be a strictly professional
consideration.

It is difficult to overstate the importance to the PSM of the distinction
between the personal and the professional, whether posed as personal moral
values versus professional ethical obligations, personal conscience versus
professional conscience,¹⁰ personal integrity versus professional integrity,¹¹
or simply personal reasons versus medical reasons. Physicians may believe
what they will “in their private lives,” write Stahl and Emanuel, “but in
their role as health care professionals, they must provide the appropriate
interventions as specified by the medical profession.”¹²

It perhaps goes without saying that judgments of conscience are, for the
PSM, the apotheosis of the personal. To refuse on the basis of conscience is
to allow personal biases to interfere with professional obligations,
particularly with the obligation to respect patients’ autonomy. It may be
difficult, the reasoning goes, but sometimes clinicians have professional
obligations to do what their personal consciences object to doing.

Yet even advocates of the PSM concede that clinicians may refuse patients’
requests when they have strong medical reasons to do so, as presumably
Mr. Anderson’s physician did, judging that antibiotics are not medically
indicated for a viral infection. How does one know whether one’s reasons
are sufficiently medical? The PSM fails to provide any nonarbitrary
standard to guide such judgments (a problem to which we return below),
but proponents of the PSM are clear that medical reasons simply cannot
include traditional norms such as the injunction to never intentionally
damage or destroy the patient’s health. They are equally clear that
physicians who allow personal concerns to influence their professional
practices thereby abuse their power and threaten harm to their patients—not
harm to the patients’ health per se, but harm to “well-being as the patient
perceives it.”¹³

Here we see the final conceptual novelty of the PSM: its standard for harm
emerges from its standard for benefit—patient well-being. In the end, if the
patient desires something in accordance with her conception of her own
well-being, the PSM calls on the physician to provide what the patient
requests or at least refer her to someone who will. To do otherwise is to fail
to obey the principle of nonmaleficence.

This position comes with deep political and professional implications. From
the standpoint of social authorities, including the state and professional
licensing organizations, the PSM implies that a physician is obligated via an
implicit social contract to provide health-care services according to the
patient’s informed choices. Dan Brock, in arguing that physicians are at
least obligated to refer patients for any legal intervention, takes for granted
that the medical profession is obligated by social contract to make available
all legal interventions.¹⁴ Therefore, authorities must scrutinize physicians’
refusals carefully; the burden of proof is on physicians to justify their
refusals and to show that they are not based on personal values.

ACOG proposes further scrutiny to make sure that physicians’ refusals are
not based on prejudice and that they are based on sound science.¹⁵
Physicians may not, for example, refuse to prescribe contraceptives based
on concern about preventing implantation of an embryo, because studies
suggest that the incidence of such effects is low (there is no need to

consider whether the incidence is low enough to make the moral difference,
as long as there is “scientific support” for treating the incidence as trivial).
Some proponents of the PSM ask policymakers to mandate such scrutiny, to
demand alternative service from those who refuse patients’ requests,¹⁶ and
to threaten sanctions that would make conscientious refusals costly.¹⁷

But such demands appear to be merely stopgap measures in anticipation of
the desired end state: the elimination of conscientious refusals from the
professional lives of physicians. As Julian Savulescu put it more than a
decade ago in an essay that seems increasingly prophetic, “If people are not
prepared to offer legally permitted, efficient, and beneficial care to a patient
because it conflicts with their values, they should not be doctors.”¹⁸

THE WAY OF MEDICINE AND PHYSICIAN REFUSAL

The Way of Medicine casts physicians’ refusals in a very different light,
asking first whether a refusal is consistent with, or contradicts, the
physicians’ commitment to the patients’ health. Rather than a prima facie
obligation to provide whatever a patient seeks, the physician instead has an
obligation to pursue what the patient’s health requires (understanding that
there may be several possible avenues of pursuit) and to refuse to act in
ways that are contrary to the patient’s health. Such refusals, rather than
abusing power, properly exercise the physician’s authority.

Note how differently the Way of Medicine treats the categories of personal
and professional. Because the PSM eschews any objective end for
medicine, the professional obligations of the physician must come from
outside the practice of medicine. Those obligations cannot be generated and
justified by commitments to an objective good that provides the purpose for
the profession. Hence the importance of what is legal, what is technically
possible, and what is desired by the patient, none of which is intrinsically
related to an essential purpose of medicine. Thus also, professional
obligations are potentially at odds with the physician’s personal

commitments, which must be left behind or overcome when they conflict
with the “professional.”

By contrast, the Way of Medicine calls on the physician, as a member of the
profession, to personally deepen and specify a commitment that the
physician already has made: attending to those who are sick so as to
preserve and restore their health—to raise that commitment to the level
appropriate to a vocation-defining profession. For practitioners of medicine,
then, the central obligation in each of the above cases is clear: to act
reasonably to preserve and restore the patient’s health, and to refuse to act
otherwise.

As we see from a slightly more philosophical perspective in the next
section, physicians can succeed in this task only if they practice according
to conscience. A physician’s conscience is clinical judgment in action. It is
the capacity used when judging whether an inclination to refuse Abe’s or
Cindy’s request is based on good reason, unreasonable desire, or unjustified
prejudice. Practicing conscientiously may be difficult, but it can never be
reasonable for a clinician to do otherwise.

The Way of Medicine also has implications for those with professional and
political authority. It teaches them that if physicians are to attend to those
who are sick using reasonable means to preserve and restore their health,
they need professional space in which to exercise judgment and to practice
conscientiously. Although the state has grounds to hold physicians
accountable to general norms of justice and the licensing and accrediting
authorities have grounds to hold physicians accountable to meet their
professional obligations, neither the state nor any other authority has
grounds to compel physicians to contradict their professional
responsibilities.

Thus, neither the state nor the profession should be in the business of
coercing physicians into meeting unscrutinized patient demands, any more
than they should coerce patients to accept this rather than that physician
proposal. Patients must be protected from the unscrupulous and the
incompetent, which a profession’s best efforts will never entirely succeed in
weeding out, and a profession must ensure that all its professionals carry
out the constitutive commitments of the profession to seek healing for those

who are sick. But professional responsibility encompasses the obligation,
and hence the right, to make conscientious judgments about what is
required in light of one’s guiding professional and vocational commitments.
This is no less true for physicians than for other professionals.

VIRTUES OF THE WAY OF MEDICINE

One’s approach to conscientious refusals turns on how one defines the
substance of physicians’ professional commitments and obligations, and we
have argued throughout the book that the Way of Medicine specifies those
commitments and obligations more reasonably. The Way of Medicine has
additional virtues that the PSM lacks.

A Better Understanding of Conscience

What makes a refusal conscientious? A judgment of conscience is, in the
paradigm case, a person’s final determination of what is permitted, not
permitted, or obligatory in a particular circumstance. What faculty is
responsible for these judgments? The traditional view is that of Aquinas: it
is practical reason, which knows the first principles of the moral law, and
practical reason, which applies those principles to situations and
circumstances so as to lead to particular moral judgments about how one
ought to act. Thus, the faculty that is responsible for judgments of
conscience, as well as the more general normative judgments presupposed
by conscience, is human reason, which is why we have spoken throughout
this book of the requirements of practical reason.¹⁹

Three points are worth noting here. First, conscience judges a person’s own
actions or motives, not those of others. Second, conscience is not a set of
considerations that a person might weigh in making a moral judgment;

rather, conscience is exercised in the judgment about how one should act in
light of all such considerations. Third, as an act of human reason,
conscience is necessarily limited and fallible; no person sees with absolute
clarity, and no person judges his or her own actions with perfect accuracy.

In light of these three points, we can see that although conscientiousness—
following one’s judgments of conscience—is necessary for ethical action, it
is not sufficient. A malformed or misinformed conscience will err. For
example, a conscientious physician may fail in his duties to relieve a
patient’s debilitating pain because he has not been trained to pay close
attention to or seek to relieve pain. Alternatively, he may fail because he
mistakenly interprets the patients’ behavior as drug-seeking and
malingering. So every physician is obligated to seek to inform his or her
conscience with the best available information, including true moral
principles. Every physician must consider arguments made by patients or
colleagues that call the physician’s initial judgment into question, and
physicians must be willing to change their judgment when they can see that
it was mistaken.

Nevertheless, in the end physicians must act, and however fallible,
physicians can act ethically only if they act according to their consciences.
Errors with respect to conscience obscure this fact. According to ACOG,
“An appeal to conscience would express a sentiment such as ‘If I were to do
“x,” I could not live with myself / I would hate myself / I wouldn’t be able
to sleep at night.’”²⁰ In fact, rarely are conscientious practices so
emotionally momentous. Rather, to practice conscientiously is simply to act
according to one’s best judgment about how one ought to act from situation
to situation, patient to patient.

Others allege that appeals to conscience are disingenuous and hide
unspoken prejudices.²¹ It goes without saying that physicians who act
disingenuously are not acting conscientiously. To act conscientiously is to
act according to what one understands to be the demands of reason. Even
where agreement exists about the purposes of medicine, physicians still
must consider innumerable different factors in order to discern how best to
seek the health of a particular patient in a particular context. This task is
almost always attended by ambiguity and uncertainty, requiring what

Aristotle called phronesis or practical wisdom, the manifestation of which
in the practice of medicine has been called good clinical judgment.²² If
physicians are to exercise clinical judgment in seeking their patients’ health,
they will necessarily refuse some patient requests.

These points illustrate another virtue of the Way of Medicine: its
understanding of conscience is much more adequate than that of the PSM.
The PSM asks us to treat conscience not as a faculty of reason but as a set
of arbitrary and idiosyncratic personal values. Stahl and Emanuel equate
conscience with appeal to “personal religious or moral beliefs.”²³ With
conscience so construed, the physician who acts conscientiously is focused
on himself and his own needs rather than on the good and what is required
of him. ACOG similarly associates conscientiousness with a need to be able
to sleep at night and a defense against moral disintegration. These personal
needs, however important, are in tension with one’s professional
commitments: “By virtue of entering the profession of medicine, physicians
accept a set of moral values—and duties—that are central to medical
practice. Thus, with professional privileges come professional
responsibilities to patients, which must precede a provider’s personal
interests.”²⁴ Stahl and Emanuel similarly aver that, “physicians’ personal
commitments cannot outweigh the interests of patients,” and they contend
that to follow conscience in refusing a patient’s request “violates the central
tenet of professional role morality in the field of medicine: the patient
comes first.”²⁵

These misconstruals of what the conscience is lead critics to make
unsupportable and contradictory claims. Critics claim that a clinician who
refuses a patient’s request thereby allows the clinician’s conscience to
trump the patient’s conscience, when in fact no conscience can trump
another conscience, since conscience judges only one’s own actions. Critics
claim that physicians should distinguish “personal conscience” from
“professional conscience,” or that physicians should balance one or both
against other considerations in deciding what to do in a given case.²⁶ Some
critics also suggest that a physician occasionally has an obligation to act
against conscience.

Such claims can make sense only if the conscience is a set of values. Then
one could have a professional conscience, a personal conscience, and
perhaps others as well. One could weigh up the conscience against other
considerations, or one conscience against another. One might even have
reason to act against conscience. But none of these construals makes sense
in light of what the conscience is: the faculty of reason that renders the final
judgment as regards what one ought to do, all things considered. So
understood, an individual has but one conscience and integrity requires that
her conscience cannot be split into components. She cannot take up her
judgment of conscience as one consideration among others. While a
physician might well have reason to reconsider an initial judgment in light
of new information, it can never be right to act against conscience, for in
doing so one is acting contrary to one’s final judgment about how one ought
to act. That is a paradigm case of acting unreasonably.

A Better Understanding of “Professional Responsibility”

The Way of Medicine not only has a more adequate construal of conscience
and its place in the practice of medicine than the PSM; it also possesses a
nonarbitrary standard for distinguishing refusals that align with the
physician’s vocation from those that contradict that vocation. Unless we are
to say that physicians may never refuse anything patients request,
physicians must have some criteria by which to distinguish between
justified and unjustified refusals.

The PSM turns, for such criterion, to the putative distinction between the
personal and the professional. As we show here, the problem with this
putative distinction is that the term “ personal” has no meaning in these
debates except “not professional,” and “ not professional” has no meaning
unless one can specify the content of the physician’s profession. As Abe’s
case demonstrates, without an objective standard for the medical profession,
saying that a concern is merely personal is not possible. Anything that
relates to the patient’s well-being can be considered a professional concern.

In the end, the category of “personal” distracts from and cloaks the fact that
the PSM cannot say what the physician’s profession requires beyond
accommodating patients’ considered, informed requests for legal and
technically feasible interventions. Without any objective standard to look to,
proponents of the PSM draw idiosyncratic and arbitrary lines between the
personal and the professional. For example, ACOG contends that
physicians must refuse policies that require them to report undocumented
patients to immigration authorities, because such policies conflict with
other professional norms, including the “primary principle of
nonmaleficence.”²⁷ In the same piece, however, ACOG takes it for granted
that physicians must refer patients for abortion, ignoring altogether
arguments that abortion violates the same principle of nonmaleficence.
Stahl and Emanuel claim that physicians might justifiably refuse assisted
suicide—a practice Emanuel has publicly opposed for decades—because
the practice is “currently controversial and subject to debate about whether
[it is] medically appropriate.”²⁸ However, they cannot bring themselves to
imagine that abortion and gender transition surgery are similarly
controversial and subject to similar debate. “Professional” responsibilities
thus emerge as sufficiently malleable to rule out what a writer dislikes and
to require what the writer affirms.

In seeking to say more about the “professional,” proponents of the PSM
often look to public and professional opinion in arbitrary and self-
contradictory ways or appeal to straw men to critique moral judgments in
medicine. On the one hand, they will refer to a “standard of care” and a
“consensus” as establishing the scope of what physicians must do. But in
the next breath they refer to the absence of consensus as the reason
physicians cannot justifiably refuse some intervention (because many
people disagree with the physician’s “personal” opinion). In a particularly
curious turn, Stahl and Emanuel claim that “health care professionals
voluntarily choose their roles and thus become obligated to provide,
perform, and refer patients for interventions according to the standards of
the profession.” Yet they then lament that the organizations that most
authoritatively establish the standards of the profession “all tend to accept
rather than question conscientious objection in health care.”²⁹ ACOG as
well as Stahl and Emanuel acknowledges deep societal disagreement about

whether abortion is permissible, yet both claim that abortion is standard
medical practice. “Although abortion is politically and culturally
contested,” Stahl and Emanuel write, “it is not medically controversial.”³⁰
So again, in the absence of clarity about the professional commitments of
medicine, proponents sometimes rely on and sometimes disavow claims of
consensus and controversy, adopting a whatever-works strategy in an
attempt to force their desired shape of conformity onto the profession.

The Way of Medicine, by contrast, distinguishes not between the
professional and the personal but between that which fulfills the physician’s
profession and that which departs from or contradicts that profession. In an
important sense, this merely distinguishes the reasonable from the
unreasonable, with attention to the particular vocation of practitioners of
medicine.

Critics worry that physicians’ refusals hide invidious discrimination under
the guise of conscience. Stahl and Emanuel say that to refuse to participate
in “gender reassignment surgery, or the use of contraception . . . is to allow
personal moral judgment to masquerade as medical practice.”³¹ ACOG
contends, “Finally, conscientious refusals should be evaluated on the basis
of their potential for discrimination.”³² But the Way of Medicine can
coherently condemn refusals that involve invidious discrimination without
abandoning either the notion of conscience or the physicians’ commitment
to the patient’s health.

The physician who refuses to care for patients with HIV because of
antipathy toward homosexuals or for patients of another race because of
racial prejudice or for criminals because of revulsion at their crimes violates
the constitutive professional obligation to seek the health of patients
precisely because they are sick, without regard to their other characteristics.
After all, the good of health is good for all persons. The professional
obligation to seek the health of patients is to be contrasted not with
conscience or with personal obligations but instead with failures of reason.
The solution to such failures is, in fact, sound exercise of conscience.

A Greater Respect for Pluralism

In contrast with the PSM, the Way of Medicine presents a workable,
peaceable approach to living with disagreement—with the pluralism that
defines our current age. Stahl and Emanuel, speaking for the PSM, write,
“Health care professionals who are unwilling to accept these limits [to
conscientious refusals] have two choices: select an area of medicine, such
as radiology, that will not put them in situations that conflict with their
personal morality or, if there is no such area, leave the profession.”³³

If the profession followed this logic to its conclusion, it would have to drum
out those who have the audacity to refuse interventions because they are not
required by or conducive to the patients’ health. This is a recipe for a
homogenous and authoritarian healthcare profession, one held together by
the forcible imposition of external norms: the norms of the legally
permitted, the technologically feasible, and what patients desire. Physicians
unwilling to work within these constraints would have to go.

Perhaps paradoxically, the Way of Medicine has much more flexibility. Let
us grant the “fact of reasonable pluralism.”³⁴ There is, we concede, no way
to recover (or forge anew) full agreement on the part of all physicians
regarding the moral obligations of medical practitioners. Nevertheless, if we
imagine a profession structured even minimally on a commitment to
patients’ health, the profession should allow conscientious refusals where
reasoned dispute exists about whether an intervention is consistent with that
goal.

In such circumstances, patients may face clinicians who make clear, in so
many words, that they do not believe what the patient seeks is what the
clinician should be doing. Patients in some areas, particularly rural areas,
may struggle to find clinicians who will provide interventions that are
available elsewhere. The profession will sustain in its ranks an ongoing
contention about what good medicine requires. The presence of differences
will push people to consider why they are making the choices they make
rather than taking practices for granted. Physicians will represent the

diversity of moral communities found in a society, and the range of choices
among philosophies of care will reflect the ongoing moral disagreements
among those communities. When people like Stahl and Emanuel insist that
physicians put their professional obligations first, we will insist that they
make an argument to show how physicians’ commitment to their patients’
health, objectively construed, requires them to participate in the
interventions in question.

We are optimistic that such a profession would come to recognize again that
certain practices are simply incompatible with physicians’ commitment to
patients’ health. Abortion, euthanasia, and sex reassignment surgeries, for
example, would be seen as simply not the business of physicians, though
treatment of pregnant mothers and their infant children, the dying, and those
suffering from gender dysphoria would be. There would still be
considerable room for disagreement, given the complexity of health and the
vagueness and indeterminacy around its boundaries—and that is to say
nothing of the scope for disagreement over how best to address the health of
a particular patient, given the inevitable limitations of medical knowledge
and technology.

The Way of Medicine recognizes that a profession must have something
that its practitioners profess in common; that something, for medicine, is the
patient’s health. The PSM gives, by contrast, a merely formal shared end:
the satisfaction of patients’ desires within what the law and medical science
allow, a goal that will frequently lead physicians to pursue contradictory
ends—for example, the life of this fetus, the death of that one. But within
the pursuit of health, the Way of Medicine sees room for professional
comity and amity: comity when the conscientious judgments of other
physicians are respected and amity when the profession is willing to tolerate
diverse moral and religious views if those are not essentially unjust. That is
a far cry from the PSM’s increasingly aggressive intolerance of
disagreement.

THE FUTURE OF MEDICINE

Elevating the PSM over the Way of Medicine will lead to three logical if
unintended consequences. First, any policy that constrains the scope of
conscientious refusals will thereby erode the possibility of conscientious
practice. It seems obvious that patients want their physicians to be
conscientious insofar as possible. Who wants a physician who is in the habit
of doing what he knows he should not do? Fortunately, individuals from
virtually all moral traditions and communities can conscientiously commit
themselves to caring for the sick. That is one reason the profession of
medicine has been able to maintain prestige and a measure of unity in a
society comprising many different moral communities. Yet efforts to reduce
the scope of conscientious refusals will gradually squeeze out or block from
entry all but those who are willing to make available to patients the full
range of legal technological interventions and to set aside their judgments
about which interventions are congruent with patients’ health.

Consider obstetrics and gynecology. If the PSM prevails, the obstetrics and
gynecology practice of the future will be hospitable only to those willing to
engage in elective abortion, sterilization, contraception, IVF, prenatal
genetic diagnosis, surrogate pregnancy, artificial insemination, cosmetic
genital surgery, gender transition surgery, and whatever comes next. Only a
minority of American physicians can cooperate conscientiously in all of
these legal, feasible, and yet morally controversial practices. Paradoxically,
patients’ choices will be reduced insofar as they will not be able to seek out
trained clinicians who share their judgment that such practices contradict
the purposes of medicine. So the process will go. Every time the scope of
conscientious refusal is narrowed, the pool of people who can be
conscientious physicians is reduced.

The second consequence is that by requiring physicians to do what patients
request, policies that constrain the scope of physician refusals will put
physicians and patients at odds with one another. The PSM already treats
the physician’s judgment as a threat to the patient. If physicians cannot
refuse patient requests, they will wonder when their patients might, with the
backing of legal sanction, ask them to act against their own understanding
and do that which they believe is unethical. By making physicians obey
patients, we will make patients a moral threat to their physicians.

The third consequence of reducing the scope of conscientious refusals is
that patients will lose the basis for trusting that their physicians are
committed to their good. Under the old model of paternalism, patients could
trust that physicians had committed themselves to their patients’ best
interests, albeit in a limited way—only insofar as those interests included
restoring and preserving health. The patients’ rights movement and the
doctrine of informed consent rightly qualified and delimited physicians’
commitment to pursue health. Out of respect for the persons they serve,
physicians are to act only with the permission of their patients. Because
health is neither the only nor the highest good, patients are authorized to
situate that good in relation to other concerns such as not being
overburdened by medical technology.

The PSM differs fundamentally: in it, patients not only qualify how their
health will be pursued but also decide what outcomes and states of affairs
their physicians will seek. Patients gain technicians committed to
cooperation and lose healers committed to their good. They gain control
over physicians but thereby divest physicians of responsibility. As a result,
patients will “often navigate treacherous medical terrain without adequate
medical guidance.”³⁵ Physicians can wash their hands of patients’
decisions, as long as they give their patients accurate information and
provide technically proficient “healthcare services.”

By asking physicians to set aside their consciences and detach from their
historical commitment to their patients’ health, the PSM contributes to a
crisis of medical morale, because the PSM quite literally demoralizes
medicine. If medicine merely provides desired services to maximize
patients’ vision of well-being, medicine’s pretense to moral seriousness will
be a charade and its attempts at professionalism a façade. Is it surprising
that today’s physicians, conditioned to think of themselves largely as mere
functionaries, suffer high rates of burnout?³⁶

There is a better way. That way involves conscientiousness and candor on
the part of physicians. Where there is ambiguity or a dispute arises about
whether a particular practice belongs in medicine, physicians and patients
can do their best to negotiate an accommodation that does not require either
to do what they believe is unethical. Rather than feign moral neutrality,

physicians will tell their patients frankly what their options are, which ones
the physician is willing to offer, and why the physician recommends one
over another. The scope of permissible accommodations will have to be set
through the political process, but we echo the conclusion reached by the
President’s Commission way back in 1982: “Considerable flexibility should
be accorded to patients and professionals to define the terms of their own
relationships.”³⁷

In conclusion, unless and until consensus is forged regarding the ends of
medicine, refusals of controversial practices cannot be shown to violate
physicians’ professional obligations. In the meantime, the practice of
medicine should be open to anyone who is willing to unreservedly commit
him- or herself to caring for the sick so as to preserve and restore their
health.

WORKING FOR HEALTH, CONTENDING FOR MEDICINE

We close by calling for healthcare professionals to strive conscientiously for
their patients’ health and in so doing to contend conscientiously for good
medicine. In some contexts, practicing the Way of Medicine will require
courage, even great courage. Trailblazers must sometimes walk alone. As
Martin Luther King Jr. said, “There comes a time when one must take a
position that is neither safe, nor politic, nor popular, but he must take it
because conscience tells him it is right.”³⁸

We do not suggest that everyone who finds the Way of Medicine
compelling should immediately set out to persuade every proponent of the
PSM that they are in error. Some are called to that task, but certainly not all
are. Nor do we recommend that physicians contend for their “rights”; we
are not advocating the antagonism of “rights talk” or pitting physicians’
rights against those of patients.

Rather, our suggestion is to practice medicine according to reason and to be
prepared to give an account of why you do what you do. Be committed to
the central good of medicine: patient health. Do nothing contrary to that
good, and align your practice to be in harmony with that good. Cultivate the
virtues of good medicine. Be a physician and a healer, not merely a
technician or a provider.

In short, be a good physician, practicing good medicine. Doing so will
function to the good of your patients and to your good as a doctor. It may
also persuade your colleagues and patients. As Leon Kass has noted, the
most basic truths often are better demonstrated in practice than in
argument.³⁹ By pursuing their patients’ health in time-tested ways that
respect the moral law, clinicians show others a better way of caring for their
patients—a way that has an integrity and even a beauty that may win over
those who at present are captive to the PSM.

Clinicians are not alone in this endeavor. This has been a book of medical
ethics, and medical ethicists and policymakers also must discern the shape
of the true practice of medicine and recognize its counterfeits. In providing
resources for that task, we hope to have made a modest contribution to the
renewal of medicine—a moral project that is ever worthy and ever
incomplete.

NOTES

PREFACE

1. David L. Sackett, William M. C. Rosenberg, J. A. Muir Gray, R. Brian
Haynes, and W. Scott Richardson, “Evidence-Based Medicine: What It Is
and What It Isn’t,” British Medical Journal 312, no. 7023 (1996): 71–72.

INTRODUCTION

1. It is important for us to clarify our use of “well-being” here. Our own
moral theory has a substantive account of human flourishing at its
foundations, and such flourishing could equally be designated as a form of
well-being. However, throughout this book, when we use the expression in
italics—well-being—we mean to designate the thin, preference- and desire-
satisfaction model that many medical ethicists presently use. We typically
italicize the first use of the expression in a chapter, and then rely on context
to make it clear which sense of “well-being” we mean.

2. As we discuss further in chapter 1, Beauchamp and Childress’s
enormously influential framework focuses on four principles: beneficence,
nonmaleficence, justice, and autonomy. See Tom L. Beauchamp and James
F. Childress, Principles of Biomedical Ethics, 7th ed. (New York: Oxford
University Press, 2013), 13–14.

3. See Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians, Not Conscripts
—Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.

4. H. Tristram Engelhardt, The Foundations of Bioethics, 2nd ed. (New
York: Oxford University Press, 1996), 7.

5. A 2016 U.S. News & World Report article showed that “nearly half of
U.S. physicians—49 percent—meet the definition for overall burnout.” In
addition, physicians’ “satisfaction with work-life balance is far lower than
that of others: 36 percent versus 61 percent.” See Steve Sternberg,
“Diagnosis: Burnout,” U.S. News & World Report, September 8, 2016. See
also Tait D. Shanafelt, Omar Hasan, Lotte N. Dyrbye, Christine Sinsky,
Daniel Satele, Jeff Sloan, and Colin P. West, “Changes in Burnout and
Satisfaction with Work-Life Balance in Physicians and the General US
Working Population between 2011 and 2014,” Mayo Clinic Proceedings 90,
no. 12 (2015): 1600–1613.

6. Michael J. Balboni and Tracy A. Balboni, Hostility to Hospitality:
Spirituality and Professional Socialization within Medicine (New York:
Oxford University Press, 2019).

7. As will become clear, we see two interrelated disagreements about
medicine: one over whether health should be the primary and largely
exclusive purpose of medicine and one over what health is.

8. Edelstein’s translation renders the Greek well: “I will neither give a
deadly drug to anybody if asked for it, nor will I make a suggestion to this
effect. Similarly I will not give to a woman an abortive remedy” (οὐ δώσω
δὲ όυδὲ ϕάπρμακον οὐδενὶ αἰτηθεὶς θανάσιμον οὐδὲ ὑϕηγήσομαι
ξυμβουλίην τοιήδε· ὁμοίως δὲ ούδὲ γυναικὶ πεσσὸν ϕθόριον δώσω).
Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943), 2–3.

9. For discussion of this claim in relation to the oath itself, see T. A.
Cavanaugh, Hippocrates’ Oath and Asclepius’ Snake (New York: Oxford
University Press, 2018).

10. C. S. Lewis, The Abolition of Man, or, Reflections on Education with
Special Reference to the Teaching of English in the Upper Forms of
Schools (San Francisco: HarperSanFrancisco, 2001), 43.

11. Gerald P. McKenney, To Relieve the Human Condition: Bioethics,
Technology, and the Body (Albany, NY: State University of New York
[SUNY] Press, 1997), 16. McKenney himself engages dialectically with a
number of previous critics, such as Hans Jonas Leon Kass and Stanley
Hauerwas, from whom we have also learned much.

12. Jeffrey P. Bishop, The Anticipatory Corpse: Medicine, Power, and the
Care of the Dying (Notre Dame, IN: University of Notre Dame Press,
2011).

13. Ibid., 9.

14. “Social imaginary” is a term that Charles Taylor explores in depth in his
Modern Social Imaginaries (Durham, NC: Duke University Press, 2004),
23.

15. Edmund D. Pellegrino, “The Internal Morality of Clinical Medicine: A
Paradigm for the Ethics of the Helping and Healing Professions,” Journal of
Medicine and Philosophy 26, no. 6 (2001): 559–79.

16. McKenney, To Relieve the Human Condition: Bioethics, 16.

17. See Edmund D. Pellegrino, The Philosophy of Medicine Reborn: A
Pellegrino Reader, ed. H. Tristram Engelhardt Jr. and Fabrice Jotterand
(Notre Dame, IN: University of Notre Dame Press, 2008); Leon R. Kass,
“Regarding the End of Medicine and the Pursuit of Health,” Public Interest
4 (1975): 11– 42; Alasdair MacIntyre, After Virtue: A Study in Moral
Theology, 3rd ed. (Notre Dame, IN: University of Notre Dame Press,
2007), 194. See also John Keown’s assessment of John Finnis: “A New
Father for the Law and Ethics of Medicine,” in Robert P. George and John
Keown, Reason, Morality, and Law: The Philosophy of John Finnis
(Oxford: Oxford University Press, 2014), 290–307.

18. See MacIntyre, After Virtue, 222.

CHAPTER ONEThe Way of Medicine

1. Alasdair MacIntyre, After Virtue: A Study in Moral Theory, 3rd ed.
(Notre Dame, IN: University of Notre Dame Press, 2007), 187.

2. For more on the difference between experiencing one’s work as a job
versus as a calling, see Robert N. Bellah, William M. Sullivan, Richard
Madsen, Ann Swindler, and Steven M. Tipton, Habits of the Heart:
Individualism and Commitment in American Life (Berkeley: University of
California Press, 1985); Amy Wrzesniewski, Clark McCauler, Paul Rozin,
and Barry Schwartz, “Jobs, Careers, and Callings: People’s Relations to
Their Work,” Journal of Research in Personality 31, no. 1 (1997): 21–33;
and Douglas T. Hall and Dawn E. Chandler, “Psychological Success: When
the Career Is a Calling,” Journal of Organizational Behavior 26, no. 2
(2005): 155–76.

3. Aristotle, Nicomachean Ethics, trans. David Ross (New York: Oxford
University Press, 2009), 1094a10.

4. For an introduction to debates about whether medicine has an intrinsic
telos and an internal morality, see the collection of papers on the subject in
the Journal of Medicine and Philosophy 26, no. 6 (2001).

5. See Jean Bethke Elshtain, “Why Science Cannot Stand Alone,”
Theoretical Medicine and Bioethics 29, no. 3 (2008): 161–69.

6. See Paul A. Lombardo, Three Generations, No Imbeciles: Eugenics, the
Supreme Court, and Buck v. Bell (Baltimore, MD: Johns Hopkins
University Press, 2010).

7. Aristotle, Nicomachean Ethics, 1094b25.

8. See, particularly, Leon Kass, “Regarding the End of Medicine and the
Pursuit of Health,” Public Interest 40 (1975): 11–42. See also Luke
Gormally, “The Good of Health and the Ends of Medicine,” in Holder
Zaborowski, Natural Moral Law in Contemporary Society (Washington,
DC: Catholic University of America Press, 2010), 264–84. Gormally argues
for views of both health and medicine very similar to ours.

9. See Christopher Boorse, “Health as a Theoretical Concept,” Philosophy
of Science 44 (1977): 542–73. Some proponents of an objective account,
such as Boorse, further understand health as merely the absence of disease.
In contrast, we claim that health is a positive quality and is, in this
important sense, prior to disease. Disease is knowable because it causes a
diminishment of health, but health is knowable apart from any disease.
What’s more, health can be diminished even in the absence of disease, as
when a person becomes unhealthy as a consequence of inactivity.
Therefore, the opposite of health is not disease but ill health—the privation
or absence of health.

10. For a discussion of evaluative concepts of health and disease see Jacob
Stegenga, Care and Cure: An Introduction to Philosophy of Medicine
(Chicago: University of Chicago Press, 2018), chaps. 1 and 2.

11. These syndromes include conditions such as chronic fatigue and
fibromyalgia. See Jiwon Helen Shin, John D. Yoon, Kenneth A. Rasinski,
Harold G. Koenig, Keith G. Meador, and Farr A. Curlin, “A Spiritual
Problem? Primary Care Physicians’ and Psychiatrists’ Interpretations of
Medically Unexplained Symptoms,” Journal of General Internal Medicine
28, no. 3 (2013): 392–98.

12. Because humans are ever incomplete, to be human is to be disabled and
dependent in significant measure, even if that dependence and disability are
not socially conspicuous.

13. Gerald P. McKenny, To Relieve the Human Condition: Bioethics,
Technology, and the Body (Albany, NY: State University of New York
[SUNY] Press, 1997).

14. Some have interpreted Kass as disregarding mental health. He was at
pains to distinguish pursuit of happiness from pursuit of health, but in our
view, his account of the well-working of the organism as a whole includes
mental health in the way we offer here.

15. Kass, “Regarding the End of Medicine,” 14; “Constitution of WHO:
Principles,” World Health Organization, April 7, 1948,
https://www.who.int/about/mission/en/.

16. Wendell Berry, “Health Is Membership,” in M. Therese Lysaught,
Joseph Kotva, Stephen E. Lammers, and Allen Verhey, ed. On Moral
Medicine (Grand Rapids, MI: Eerdmans, 2012), 420.

17. “Shalom” translates as “peace,” but, much like the term “health,”
“shalom” can be used analogically to refer to wholeness, completeness, and
blessedness. We find it notable that Jewish tradition requires Jews to live in
a community that has a physician, and although rabbis can also be
physicians—and often have been—Jewish tradition distinguishes the two
roles. See Immanuel Jakovovitz, Jewish Medical Ethics: A Comparative
and Historical Study of the Jewish Religious Attitude to Medicine and Its
Practice (New York: Block Publishing, 1975), 204–13.

18. Or, as Kass puts it, “in accordance with its specific excellences,” in
“Regarding the End of Medicine,” 29.

CHAPTER TWOThe Requirements of Practical Reason

1. Aristotle, Nicomachean Ethics, trans. David Ross (New York: Oxford
University Press, 2009).

2. We think of life and health as constituting one (complex) good. When
health is gone, no life remains. When life is present, some health remains.
In this book, wherever we use the term “health,” we mean this complex
basic good of life and health.

3. A commitment to human goods and human flourishing characterizes
much natural law theory, yet different theorists identify different goods as
basic or fundamental. Our list of basic goods is largely drawn from
Germain Grisez, Joseph Boyle, and John Finnis, “Practical Principles,
Moral Truth, and Ultimate Ends,” American Journal of Jurisprudence 32
(1987): 106–8, which, however, omits marriage. That good is present in
Aquinas’s list in Summa Theologiae, 1–2, q. 94, a.2.

4. For a consequentialist approach to some important questions of medical
ethics, see Helga Kuhse and Peter Singer, Should the Baby Live? The
Problem of Handicapped Infants (Oxford: Oxford University Press, 1985).
John Harris is an important defender of a broadly libertarian-
consequentialist approach to bioethics. See, e.g., Harris, The Value of Life
(New York: Routledge, 1995).

5. For further discussion, see Robert P. George and Christopher Tollefsen,
Embryo: A Defense of Human Life (New York: Doubleday, 2008), chap. 4:
“Moral Philosophy and the Early Human Being,” 83–111.

6. See Rachel Aviv, “What Does It Mean to Die?” New Yorker, February 5,
2018, www.newyorker.com.

7. National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research, “The Belmont Report,” Department
of Health, Education, and Welfare, April 18, 1979, www.hhs.gov.

8. Beauchamp and Childress’s first edition of Principles of Biomedical
Ethics was published in 1979. The book is now in its seventh edition and
has for decades been the most widely used medical ethics textbook in the
world.

9. Beauchamp refers to all of these as “alleged competitors” of principlism
in “Principlism and Its Alleged Competitors,” Kennedy Institute of Ethics
Journal 5, no. 3 (1995).

10. Beauchamp is quite explicit that there are no absolutes and that the
prohibition against killing is just the sort of prohibition an ethics needs to be
able to overcome (e.g., through compassionate aid-in-dying). See
Beauchamp, “Principlism and Its Alleged Competitors.”

11. Alfonso Gomez-Lobo also makes, and extends, a similar criticism of
principlism in his (with John Keown), Bioethics and the Human Goods: An
Introduction to Natural Law Bioethics (Washington, DC: Georgetown
University Press, 2015).

12. Immanuel Kant, Grounding for the Metaphysics of Morals., trans.
James W. Ellington, 3rd ed. (Indianapolis: Hackett, 1993 [1785]), 36.

13. John Rawls, “The Idea of Public Reason Revisited,” University of
Chicago Law Review 60, no. 3 (1997): 765–807.

14. A 2003 survey of US physicians from all specialties found that 71
percent agreed (32 percent strongly) with the statement “For me, the
practice of medicine is a calling.” See Farr A. Curlin, Lydia S. Dugdale,
John D. Lantos, and Marshall H. Chin, “Do Religious Physicians
Disproportionately Care for the Underserved?” Annals of Family Medicine
5, no. 4 (2007): 353–60. Among those who indicated that they have no
religion, 52 percent agreed (20 percent strongly), and among those who
indicated that they never attend religious services, 56 percent agreed (22
percent strongly) (data unpublished). A 2010 survey of U.S. primary care
physicians and psychiatrists found that more than 80 percent of both groups
agreed (about 40 percent strongly) with the same statement. See John D.
Yoon, Jiwon H. Shin, Andy L. Nian, and Farr A. Curlin, “Religion, Sense
of Calling, and the Practice of Medicine: Findings from a National Survey
of Primary Care Physicians and Psychiatrists,” Southern Medical Journal
108, no. 3 (2015): 189–95. Again, substantial majorities of the unreligious
agreed (more than 65 percent of physicians who report no religious
affiliation, indicate that they have no religion, and/or indicate that they
never attend religious services) (data unpublished).

15. Gaudium et spes, no. 24. See Vatican Council II: The Basic Sixteen
Documents; Constitutions, Decrees, Declarations, rev. ed., ed. Austin
Flannery (Northport, NY: Costello Publishing, 1996), 190.

16. For an accessible introduction to the idea of personal vocation, see
Germain Grisez and Russell Shaw, Personal Vocation: God Calls Everyone
(Huntington, IN: Our Sunday Visitor, 2003).

CHAPTER THREEThe Doctor-Patient Relationship

1. Here we focus on the contributions of Mark Siegler as well as Timothy E.
Quill and Howard Brody, but there have been many critiques of making
patient autonomy the regulative principle for medical ethics. Prominent
contributions to this literature include Carl Schneider, The Practice of
Autonomy: Patients, Doctors, and Medical Decisions (New York: Oxford
University Press, 1998); Ezekiel J. Emanuel and Linda L. Emanuel, “Four
Models of the Physician-Patient Relationship,” Journal of the American
Medical Association 267, no. 16 (1992): 2221–26; and David Thomasma,
“Beyond Medical Paternalism and Patient Autonomy: A Model of
Physician Conscience for the Physician-Patient Relationship,” Annals of
Internal Medicine 98, no. 2 (1983): 243–48.

2. Leon R. Kass, “Regarding the End of Medicine and the Pursuit of
Health,” Public Interest 4 (1975): 11–42.

3. Mark Siegler, “Searching for Moral Certainty in Medicine: A Proposal
for a New Model of the Doctor-Patient Encounter,” Bulletin of the New
York Academy of Medicine 57, no. 1 (1981): 56–69.

4. Ibid., 58.

5. President’s Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research, “Making Health Care Decisions:
The Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 35,
https://repository.library.georgetown.edu.

6. Some physicians can fail in this way for a long time and still be quite
useful to patients with respect to health, particularly subspecialists whose
work is more reducible to technique and technological production. One
thinks, for example, of the brain surgeon who is exquisitely committed to
doing a technically proficient job—even a job that deserves to be called
“beautiful,” but who could not care less about his patients’ flourishing. A
patient might reasonably seek out such a surgeon, even over the surgeon
who fasts and prays for the healing of the patients he carries in his heart, if
the latter surgeon is not as technically gifted.

7. Somewhat paradoxically, while the PSM embraces physicians’ engaging
in practices that violate traditional boundaries by damaging health, it also
opposes physicians engaging in practices such as praying with patients,
because these practices, while not injuring health, putatively cross
professional boundaries. See Farr A. Curlin and Daniel E. Hall, “Strangers
or Friends? A Proposal for a New Spirituality-in-Medicine Ethic,” Journal
of General Internal Medicine 20, no. 4 (2005): 370–74, for a deeper
analysis of debates about physicians paying attention to the spiritual
concerns of patients.

CHAPTER FOURAutonomy and Authority

1. The 1979 Belmont Report and the 1982 “Making Health Care Decisions”
report both focused on the importance of informed consent—the former
with respect to the research context, the latter with respect to clinical
practice. See National Commission for the Protection of Human Subjects of
Biomedical and Behavioral Research, “The Belmont Report,” Department
of Health, Education, and Welfare, April 18, 1979, www.hhs.gov. See also
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, “Making Health Care Decisions: The
Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 35,
https://repository.library.georgetown.edu.

2. Immanuel Kant, Grounding for the Metaphysics of Morals, trans. James
W. Ellington, 3rd ed. (Indianapolis: Hackett, 1993 [1785]), 30.

3. A different formulation of the categorical imperative was cited in chapter
2; Kant believed them to be equivalent despite their apparent differences.

4. For the term “expressive individualism,” see Robert N. Bellah, William
M. Sullivan, Richard Madsen, Ann Swindler, and Steven M. Tipton, Habits
of the Heart: Individualism and Commitment in American Life (Berkeley:
University of California Press, 1985), 27.

5. For an accessible philosophical history of this cultural emphasis on
authentic self-expression and self-development, see Charles Taylor, The
Ethics of Authenticity (Cambridge, MA: Harvard University Press, 1991).

6. Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833
(SCOTUS, 1992), 861.

7. Stephen Darwall, “Two Kinds of Respect,” Ethics 88, no. 1 (1977): 36–
49.

8. Ms. Maynard was a young woman from California who moved to
Oregon to die by physician-assisted suicide. We discuss her case further in
chapter 9. See Britanny Maynard, “My Right to Death with Dignity at 29,”
CNN, November 2, 2014, www.cnn.com.

9. See, for example, Health Occupations—Conversion Therapy for Minors
—Prohibition (Youth Mental Health Protection Act), Annotated Code of
Maryland, Article—Health Occupations, Section 1–212.1.

10. See Ronit Y. Stahl, and Ezekiel J. Emanuel, “Physicians, Not Conscripts
—Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.

11. For further discussion of this point, see Robert P. George, Making Men
Moral: Civil Liberties and Public Morality (Oxford: Oxford University
Press, 1995), chap. 6.

12. Of course, patients’ medical conditions frequently impair their
autonomy, sometimes to the point that they cannot be said to be self-
governing. How physicians should respond to and care for such patients is a
topic we return to in chapter 8.

13. John Finnis, Natural Law and Natural Rights (Oxford: Oxford
University Press, 2011), 232.

14. Mark Siegler, “Searching for Moral Certainty in Medicine: A Proposal
for a New Model of the Doctor-Patient Encounter,” Bulletin of the New
York Academy of Medicine 57, no. 1 (1981): 56–69.

15. For further discussion of this question, see Joseph Boyle, “Personal
Responsibility and Freedom in Health Care: A Natural Law Perspective,” in
Persons and Their Bodies: Rights, Responsibilities, Relationships, ed. Mark
Cherry (Dordrecht, Netherlands: Springer, 1999): 111–41.

16. We return to these ideas in our discussion of medical decisions at the
end of life in chapters 8 and 9.

17. See Timothy E. Quill and Howard Brody, “Physician Recommendations
and Patient Autonomy: Finding a Balance between Physician Power and
Patient Choice,” Annals of Internal Medicine 125, no. 9 (1996): 763–69.

CHAPTER FIVEThe Rule of Double Effect

1. Are there other standards? We think that there are, but that many
standards are in one way or another reducible to fairness or vocation. So,
for example, one’s having promised something bears on what is and is not a
proportionate reason for doing that thing; but the importance of promising
clearly is related to both fairness and vocation.

2. In some cases, prioritizing is built into a good’s nature. Marriage, for
example, requires prioritizing marriage above some other goods, and the
good of religion, as we argue, requires that religion be put before all other
commitments.

3. This way of understanding intention is simpler than that put forth by
some philosophers, who, with Thomas Aquinas, identify an “interior
object” and an “exterior object” of the human act roughly, where we talk
only about “ends” and “means.” Nevertheless, we think that our concept
largely tracks traditional natural law discussions of intention. Aquinas
himself frequently speaks as we do: intention encompasses the end and the
means. This simplicity bears fruit, as we discuss below, in our simple
formulation of the rule of double effect.

4. Fairness may seem obvious. But vocation? We think so, as it may be that
the explorers, recognizing the need for teamwork and trust, have solemnly
promised to one another to “leave no man behind” even if by keeping this
promise they will all die. Our point is not that such a commitment is wise
but that commitments can specify obligations that reasonably prevent us
from doing what we would do if we had not made such commitments.

5. Christopher Tollefsen, “Is a Purely First Person Account of Human
Action Defensible?” Ethical Theory and Moral Practice 9, no. 4 (2006):
441–60, and Tollefsen, “Double Effect and Two Hard Cases in Medical
Ethics,” American Catholic Philosophical Quarterly 89, no. 3 (2015): 407–
20.

6. Sulmasy and Pellegrino describe these four conditions in the following
way: “The traditional rule of double effect specifies that an action with 2
possible effects, one good and one bad, is morally permitted if the action:
(1) is not in itself immoral, (2) is undertaken only with the intention of
achieving the possible good effect, without intending the possible bad effect
even though it may be foreseen, (3) does not bring about the possible good
effect by means of the possible bad effect, and (4) is undertaken for a
proportionately grave reason.” Daniel P. Sulmasy and Edmund D.
Pellegrino, “The Rule of Double Effect: Clearing Up the Double Talk,”
Archives of Internal Medicine 159, no. 6 (1999): 545–50.

7. See, for example, Timothy E. Quill, Rebecca Dresser, and Dan W. Brock,
“The Rule of Double Effect—A Critique of Its Role in End-of-Life
Decision Making,” New England Journal of Medicine 337, no. 24 (1997):
1768–71.

CHAPTER SIXSexuality and Reproduction

1. The FDA approved the first oral contraceptive in 1960. For a history of
the oral contraceptive, see Bernard Asbell, The Pill: A Biography of the
Drug That Changed the World (New York: Random House, 1995).

2. Mark Siegler and Dudley Goldblatt, “Clinical Intuition: A Procedure for
Balancing the Rights of Patients and the Responsibilities of Physicians,” in
The Law—Medicine Relation: A Philosophical Exploration, ed. S. F.
Spicker, J. M. Healey, and H. T. Engelhardt (Dordrecht, Netherlands:
Springer, 1981), 25–26.

3. See T. A. Cavanaugh, Hippocrates’ Oath and Asclepius’ Snake (New
York: Oxford University Press, 2018), chap. 1.

4. Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833
(SCOTUS, 1992), 856.

5. Part of the argument for contraception is that it will reduce the number of
abortions by reducing the number of unplanned pregnancies. That seems
intuitive enough, but evidence suggests that abortion rates decline only
among users of contraception methods that have very low failure rates and
make few demands on users (e.g., intrauterine devices and implantable
contraceptives). More common methods, including the oral contraceptive
pill, do not seem to reduce abortion rates, and in some cases are associated
with higher abortion rates. See William Saletan, “Does Contraception
Reduce Abortions?” Slate, September 1, 2015, www.slate.com.

6. A prominent website for these practitioners states, “Unlike common
suppressive or destructive approaches, NaProTECHNOLOGY works
cooperatively with the procreative and gynecologic systems. When these
systems function abnormally, NaProTECHNOLOGY identifies the
problems and cooperates with the menstrual and fertility cycles that correct
the condition, maintain the human ecology, and sustain the procreative
potential” (emphasis in original). See “NaProTECHNOLOGY,” Pope Paul
VI Institute for the Study of Human Reproduction,
www.naprotechnology.com/.

7. Oliver O’Donovan, Ali Al Chami, and Melanie Davies, “Ovarian
Hyperstimulation Syndrome,” Obstetrics, Gynaecology, and Reproductive
Medicine 25, no. 2 (2015): 43–48.

8. See Christopher Tollefsen, “In Vitro Fertilization Should Not Be an
Option for a Woman,” in Contemporary Debates in Bioethics, ed. Arthur L.

Caplan and Robert Arp (Chichester, UK: John Wiley & Sons, 2014), 451–
59.

9. What Jules and patients like him hope for must be distinguished, of
course, from medical attempts to repair damaged secondary sex
characteristics and sexual capacities, including attempts to resolve sex
ambiguity. More on that below.

10. This distinction has applications outside the natural order also. For
example, Thomas Aquinas gives us an account of law as an ordinance of
reason, given by one with authority, for the common good, and
promulgated. This is the paradigm case, law in good working order. But it is
easy to find examples of law that do not share all these features of the
paradigm. To pick an obvious example, Jim Crow laws that enforced
segregation in the American South did not display these features and as
such do not stand as evidence of the diversity of law, properly understood,
as much as one among many sordid examples of the distortion of law into
something that has the appearance of law but contradicts its purpose. Our
capacity to recognize this distinction makes it possible for us to see how
unjust laws can, in many circumstances, be justly broken.

11. Kenneth Miller, “Together Forever,” LIFE, April 1, 1996, 44–54.

12. Congenital vaginal agenesis is a rare condition (experienced by about 1
in 4,000 females) in which a vagina does not form properly before birth.
Reconstructive surgeries can be performed to fashion a vagina. See G.
Creatsas and E. Deligeoroglou, “Vaginal Aplasia and Reconstruction,” Best
Practice and Research: Clinical Obstetrics and Gynaecology 24, no. 2
(2010): 185–91. In addition, penis transplant patients have successfully
recovered urinary and sexual function. See
https://www.reuters.com/article/us-safrica-transplant/worlds-first-penis-
transplant-patient-to-father-a-child-idUSKBN0OS1HW20150612.

13. For this reason, we believe, with Paul McHugh, that it was an error for
physicians at institutions such as Johns Hopkins to attempt to help males
born with abnormal genitalia by constructing female “genitalia” and
treating these young boys like girls. Such surgeries did not correct a
deficiency in physical health and arguably generated significant mental

health problems for their subjects. See Paul R. McHugh, “Surgical Sex,”
First Things 147 (2004): 34–38.

14. Obviously sex-change surgeries irreversibly damage the reproductive
capacities of patients, but even administering hormones to delay or block
puberty can lead to irreversible damage to patients like Jules. Indeed, at
present there is no reliable way to suppress pubertal development in males
without the risk of rendering the patients permanently sterile.

15. A paradigmatic example of this charge among practitioners of the new
medicine is found in Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians,
Not Conscripts: Conscientious Objection in Health Care,” New England
Journal of Medicine 376, no. 14 (2017): 1382. We discuss Stahl and
Emanuel at length in chapter 10. For the Obama administration’s Health
and Human Services mandate asserting that it is unlawful to categorically
refuse to participate in gender transition services, see Department of Health
and Human Services, “Nondiscrimination in Health Programs and
Activities,” Federal Register 81, no. 96 (2016): 31376–473.

CHAPTER SEVENAbortion and Unborn Human Life

1. The American College of Obstetricians and Gynecologists’ official
policy on abortion says that “induced abortion is an essential component of
women’s health care.” See “Abortion Policy,” July 2011, www.acog.org.

2. Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943), 3.

3. W. H. S. Jones. The Doctor’s Oath: An Essay in the History of Medicine
(New York: Cambridge University Press, 1924), 23.

4. On human rights and the 1948 Geneva Declaration, see Andreas Frewer,
“Human Rights from the Nuremberg Doctors Trial to the Geneva
Declaration: Persons and Institutions in Medical Ethics and History,”

Medical Health Care and Philosophy 13 (2010): 259–68. For a discussion
of the changes made in the most recent revision of the declaration, see
Ramin Walter Parsa-Parsi, “The Revised Declaration of Geneva: A
Modern-Day Physician’s Pledge,” Journal of the American Medical
Association 318, no. 20 (2017): 1971–72. For past versions of the
declaration, see World Medical Association, “Declaration of Geneva,”
www.wma.net.

5. The American Medical Association’s current position on abortion is terse
and noncommittal: “The issue of support of or opposition to abortion is a
matter for members of the AMA to decide individually, based on personal
values or beliefs. The AMA will take no action which may be construed as
an attempt to alter or influence the personal views of individual physicians
regarding abortion procedures.” American Medical Association, “Abortion
H-5.990,” last modified 2009, https://policysearch.ama-assn.org.

6. Keith L. Moore, T. V. N. Persaud, and Mark G. Torchia, The Developing
Human: Clinically Oriented Embryology, 10th ed. (Philadelphia: Elsevier,
2016), 11.

7. For interesting evidence regarding this point, see Helen Pearson, “Your
Destiny, from Day One,” Nature 418, no. 6893 (2002): 14–15.

8. See, in particular, Robert P. George and Christopher Tollefsen, Embryo:
A Defense of Human Life, 2nd ed. (Princeton, NJ: Witherspoon Institute,
2011).

9. On December 10, 1948, the United Nations ratified the Universal
Declaration of Human Rights. See United Nations, “Universal Declaration
of Human Rights,” www.ohchr.org.

10. See Martin Rhonheimer, Vital Conflicts in Medical Ethics: A Virtue
Approach to Craniotomy and Tubal Pregnancies, ed. William F. Murphy
(Washington, DC: Catholic University of America Press, 2009).

11. Judith Jarvis Thomson, “A Defense of Abortion” Philosophy & Public
Affairs 1, no. 1 (1971): 47–66.

12. Ibid., 48.

13. Ibid.

14. See Jeffrey Reiman’s discussion of the constitutional right to abortion in
Critical Moral Liberalism: Theory and Practice (Lanham, MD: Rowman
and Littlefield, 1996). John Finnis criticizes Reiman’s position in “Public
Reason, Abortion, and Cloning,” Valparaiso University Law Review 32
(1998): 361–82.

15. Consider, for example, a mother with no other children, who has a
loving husband, strong family support, and a strong devotion to unborn
human life; she works, let us suppose, for a pro-life counseling group. Such
a mother (but not only such a one) could, we think, reasonably choose in
favor of saving the baby’s life. She would be assured the child would be
loved and well cared for, and her calling to pro-life witness could lead her
reasonably to this choice. But another mother, equally devoted to the
unborn but with several other children in need of maternal care, might, in
her circumstances, choose in favor of saving her own life. The decision, we
stress, is up to her, and she is not without resources for guidance in making
that decision. But we think there are limited external grounds on which a
third party could criticize one or the other choice.

16. St. Joseph’s Hospital and Medical Center, “Bishop Olmsted
Announcement: Frequently Asked Questions,” accessed May 7, 2018,
www.dignityhealth.org.

17. Nicanor Pier Giorgio Austriaco, “Abortion in a Case of Pulmonary
Arterial Hypertension,” National Catholic Bioethics Quarterly 11, no. 3
(2011): 514.

18. For a comparison of the effects on fertility of salpingotomy and
salpingectomy, see Femke Mol, Norah M. van Mello, Annika Strandell,
Karin Strandell, and Davor Jurkovic, “Salpingotomy versus Salpingectomy
in Women with Tubal Pregnancy,” Lancet 383, no. 9927 (2014): 1483–89,
and Xiaolin Cheng, Xiaoyu Tian, Zhen Yan, Mengmeng Jia, Jie Deng, Ying
Wang, and Dongmei Fan, “Comparison of the Fertility Outcome of
Salpingotomy and Salpingectomy in Women with Tubal Pregnancy: A

Systematic Review and Meta-Analysis,” PLoS One 11, no. 3 (2016):
e0152343. For the American College of Obstetricians and Gynecologists’
recommendations, see “ACOG Practice Bulletin: Clinical Management
Guidelines for Obstetrician-Gynecologists, no. 193,” Obstetrics and
Gynecology 131 (2018): 91–103, www.acog.org.

19. For an argument, which seems sound to us, that the use of methotrexate
does not necessarily involve intentional killing, see Christopher Kaczor,
“The Ethics of Ectopic Pregnancy: A Critical Reconsideration of
Salpingotomy and Methotrexate,” Linacre Quarterly: A Journal of the
Philosophy and Ethics of Medical Practice 76 (2009): 265–82.

CHAPTER EIGHTMedicine at the End of Life

1. Leon R. Kass, “Regarding the End of Medicine and the Pursuit of
Health,” Public Interest 4 (1975): 18.

2. World Health Organization, “WHO Definition of Palliative Care,”
www.who.int.

3. See Timothy E. Quill, Bernard Lo, and Dan W. Brock, “Palliative
Options of Last Resort: A Comparison of Voluntarily Stopping Eating and
Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary
Active Euthanasia,” Journal of the American Medical Association 278, no.
23 (1997): 2099–104; Pieter J. J. Sauer and Eduard Verhagen, “The
Groningen Protocol—Euthanasia in Severely Ill Newborns,” New England
Journal of Medicine 352, no. 10 (2005): 959–62.

4. National Hospice and Palliative Care Organization, “Preamble to
NHPCO Standards of Practice,” www.nhpco.org.

5. Atul Gawande, Being Mortal: Medicine and What Matters in the End
(New York: Metropolitan Books, 2014).

6. A 2006 study found that “on average, patient-designated and next-ofkin
surrogates incorrectly predict patients’ end-of-life treatment preferences in
one third of cases” (David I. Shalowitz, Elizabeth Garrett-Mayer, and David
Wendler, “The Accuracy of Surrogate Decision Makers,” Archives of
Internal Medicine 166, no. 5 (2006): 497. In addition, Sharma et al. found
that family members are also highly inaccurate in predicting how their
loved ones want decisions to be made. See Rashmi K. Sharma, Mark T.
Hughes, Mari T. Nolan, Carrie Tudor, Joan Kub, Peter B. Terry, and Daniel
P. Sulmasy, “Family Understanding of Seriously Ill Patient Preferences for
Family Involvement in Healthcare Decision Making,” Journal of General
Internal Medicine 26, no. 8 (2011): 881–86.

7. The Hippocratic tradition affirmed that the physician should
acknowledge and respect the limits of medicine. Consider this statement
attributed to Hippocrates in “The Art”: “For if a man demand from an art a
power over what does not belong to the art, or from nature a power over
what does not belong to nature, his ignorance is more allied to madness
than to lack of knowledge. For in cases where we may have the mastery
through the means afforded by a natural constitution or by an art, there we
may be craftsmen, but nowhere else. Whenever therefore a man suffers
from an ill which is too strong for the means at the disposal of medicine, he
surely must not even expect that it can be overcome by medicine.”
Hippocrates, “The Art,” in Hippocrates, vol. 2, trans.W. H. S. Jones
(Cambridge, MA: Harvard University Press, 1923), 204–5.

CHAPTER NINELast-Resort Options

1. For a discussion of the good of solidarity in this context, see Joseph
Boyle, “A Case for Sometimes Tube-Feeding Patients in Persistent
Vegetative State,” in Euthanasia Examined: Ethical, Clinical, and Legal
Perspectives, ed. John Keown (Cambridge: Cambridge University Press,
1995), 189–99.

2. See Alan Meisel, Bernard Lo, Timothy E. Quill, and Dan W. Brock,
“Last-Resort Options for Palliative Sedation,” Annals of Internal Medicine
151, no. 6 (2009): 421–24, and, from earlier, Timothy E. Quill, Bernard Lo,
and Dan W. Brock, “Palliative Options of Last Resort: A Comparison of
Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-
Assisted Suicide, and Voluntary Active Euthanasia,” Journal of the
American Medical Association 278, no. 23 (1997): 2099–104.

3. See Farr A. Curlin, “Palliative Sedation: Clinical Context and Ethical
Questions,” Theoretical Medicine and Bioethics 39, no. 3 (2018): 197–209.

4. Ira Byock, Dying Well: Peace and Possibilities at the End of Life (New
York: Riverhead Books, 1998), 193–216.

5. Ibid., 215.

6. For an elaboration of this account of suffering, see Christopher Tollefsen,
“Suffering, Enhancement, and Human Goods,” Quaestiones Disputatae 5
(2015): 104–17.

7. Lord Marchmain’s conversion occurs in the final chapter of Evelyn
Waugh’s Brideshead Revisited (New York: Back Bay Books, 1999). The
miniseries, directed by Charles Sturridge, was produced by Granada
Television and released in 1981.

8. See Curlin, “Palliative Sedation.”

9. Arthur Caplan, “Bioethicist Caplan: Brittany Maynard Did Nothing
Unethical,” USA Today, November 4, 2014, www.usatoday.com.

10. See Oregon Public Health Division, “Oregon’s Death with Dignity Act
—2014,” Oregon Health Authority, www.oregon.gov.

11. Brittany Maynard, “My Right to Death with Dignity at 29,” CNN,
November 2, 2014, www.cnn.com.

12. Oregon Public Health Division, “Oregon’s Death with Dignity Act—
2014.”

13. Ibid.

14. Anthony L. Back, Timothy E. Quill, and Susan D. Block, “Responding
to Patients Requesting Physician-Assisted Death: Physician Involvement at
the Very End of Life,” Journal of the American Medical Association 315,
no. 3 (2016): 245–46.

15. See www.compassionandchoices.org.

16. Center for Health Statistics and Informatics, “End of Life Option Act,”
California Department of Public Health, www.cdph.ca.gov.

17. Ian Lovett and Richard Pérez-Peña, “California Governor Signs
Assisted Suicide Bill into Law,” New York Times, October 5, 2015,
www.nytimes.com.

18. Robert A. Burt, “The Suppressed Legacy of Nuremberg,” Hastings
Center Report 26, no. 5 (1996): 33.

19. Ibid.

20. The patient’s name and some details have been altered to preserve
confidentiality.

21. Ludwig Edelstein, The Hippocratic Oath: Text, Translation, and
Interpretation (Baltimore, MD: Johns Hopkins University Press, 1943, 3.

22. American Medical Association, “Physician Assisted Suicide H-
140.952,” last modified 2009, https://policysearch.ama-assn.org.

23. Public Health Division, “Oregon Death with Dignity Act, 2017, Data
Summary,” Oregon Health Authority, February 9, 2018, www.oregon.gov.

24. Disease Control and Health Statistics Division, “Washington State
Death with Dignity Act Report,” Washington State Department of Health,
March 2018, www.doh.wa.gov.

25. Black Americans are significantly less likely to use hospice services.
The 2016 “Facts and Figures” published by the National Hospice and

Palliative Care Organization and revised in 2018 shows that 8.2 percent of
Medicare hospice patients were African American, compared to 86.8
percent who were white. See “Facts and Figures: Hospice Care in
America,” National Hospice and Palliative Care Organization, revised April
2018, www.nhpco.org. See also Kimberly S. Johnson, Maragatha
Kuchibhatla, and James A. Tulsky, “What Explains Racial Differences in
the Use of Advance Directives and Attitudes toward Hospice Care?,”
Journal of the American Geriatrics Society 56, no. 10 (2008): 1953–58.

26. Diane Coleman, “Assisted Suicide Laws Create Discriminatory Double
Standard for Who Gets Suicide Prevention and Who Gets Suicide
Assistance: Not Dead Yet Responds to Autonomy, Inc.,” Disability and
Health Journal 3 no. 1 (2010): 39–50.

27. Richard M. Zaner, A Critical Examination of Ethics in Health Care and
Biomedical Research (Dordrecht, Netherlands: Springer, 2015), 30–32.

CHAPTER TENConscientious Medicine

1. These arguments lean heavily on a moral distinction and tension between
the personal and the professional, whether posed as personal moral values
versus professional ethical obligations, personal conscience versus
professional conscience, or duties related to personal versus professional
integrity. For prominent examples of such arguments, see Julian Savulescu,
“Conscientious Objection in Medicine,” British Medical Journal 332
(2006): 294–97; Julian Savulescu and Udo Schuklenk, “Doctors Have No
Right to Refuse Medical Assistance in Dying, Abortion or Contraception,”
Bioethics 31, no. 3 (2017): 162–70; Udo Schuklenk and Ricardo Smalling,
“Why Medical Professionals Have No Moral Claim to Conscientious
Objection Accommodation in Liberal Democracies,” in Journal of Medical
Ethics 43, no. 4 (2017): 234–40; Robert F. Card, “Reasonability and
Conscientious Objection in Medicine: A Reply to Marsh and an Elaboration
of the Reason-Giving Requirement,” Bioethics 28, no. 6 (2014): 320–26;
Eva LaFollette and Hugh LaFollette, “Private Conscience, Public Acts,”

Journal of Medical Ethics 33, no. 5 (2007): 249–54; Howard Brody and
Susan S. Night, “The Pharmacist’s Personal and Professional Integrity,”
American Journal of Bioethics 7, no. 6 (2007): 16–17.

2. Ronit Y. Stahl and Ezekiel J. Emanuel, “Physicians, Not Conscripts—
Conscientious Objection in Health Care,” New England Journal of
Medicine 376, no. 14 (2017): 1380–85.

3. The Professional Obligations and Human Rights policy was issued by the
College of Physicians and Surgeons of Ontario, which has state-sanctioned
authority over medical practitioners. The college published a fact sheet to
explain the policy, www.cpso.on.ca. See The Christian Medical and Dental
Society of Canada v. College of Physicians and Surgeons of Ontario, 2018
ONSC 579, www.canlii.org.

4. Illinois General Assembly, Public Act 099-0690, SB 1564, July 29, 2016,
www.ilga.gov.

5. “Swedish Anti-Abortion Midwife Loses Court Case,” BBC, April 13,
2017.

6. Stahl and Emanuel, “Physicians, Not Conscripts,” 1382.

7. Ibid., emphasis added.

8. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385: The Limits of Conscientious Refusal in
Reproductive Medicine,” Obstetrics & Gynecology 110, no. 5 (2007): 1205,
emphasis added.

9. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.

10. Eva LaFollette and Hugh LaFollette, “Private Conscience, Public Acts,”
Journal of Medical Ethics 33, no. 5 (2007): 249–54.

11. Howard Brody and Susan S. Night, “The Pharmacist’s Personal and
Professional Integrity,” American Journal of Bioethics 7, no. 6 (2007): 16–
17.

12. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.

13. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1205.

14. Dan W. Brock, “Conscientious Refusal by Physicians and Pharmacists:
Who Is Obligated to Do What, and Why?,” Theoretical Medicine and
Bioethics 29, no. 3 (2008): 187–200.

15. On page 1205 of the “ACOG Committee Opinion No. 385,” they write,
“The third criterion for evaluating authentic conscientious refusal is the
scientific integrity of the facts supporting the objector’s claim. Core to the
practice of medicine is a commitment to science and evidence-based
practice.”

16. Stahl and Emanuel argue that those who refuse patient requests should
be treated like conscientious objectors to military service, who “are required
to perform alternative service.” Stahl and Emanuel, “Physicians, Not
Conscripts,” 1383.

17. “The military conscientious objector faced real penalties—fines,
imprisonment, or alternative service—for resisting conscription.” Stahl and
Emanuel, “Physicians, Not Conscripts,” 1384.

18. Julian Savulescu, “Conscientious Objection in Medicine,” British
Medical Journal 332 (2006): 294.

19. Thomas Aquinas, Summa Theologiae, 1-1, q.79, aa12, 13.

20. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1204.

21. In response to pharmacists who refused to fill prescriptions for
emergency contraception, before the FDA made the drug available over the
counter, Brody and Night wrote that they “suspect that what the
‘conscientious’ pharmacist actually objects to, but does not have the nerve
to say outright, is the possibility that a woman can engage in sexual activity
without having to face the ‘moral’ consequences of her potentially illicit

act.” Brody and Night, “Pharmacist’s Personal and Professional Integrity,”
17.

22. Thomasma defines the conscience of the physician as prudential
judgment, adding, “Prudential judgment encompassing medical and value
factors in the physician-patient relation is a hallmark of professional
conduct.” David Thomasma, “Beyond Medical Paternalism and Patient
Autonomy: A Model of Physician Conscience for the Physician-Patient
Relationship,” Annals of Internal Medicine 98, no. 2 (1983): 244.

23. Stahl and Emanuel, “Physicians, Not Conscripts,” 1380.

24. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1205, emphasis added.

25. Stahl and Emanuel, “Physicians, Not Conscripts,” 1384.

26. Consider this statement in “ACOG Committee Opinion No. 385”:
“Although respect for conscience is a value, it is only a prima facie value,
which means it can and should be overridden in the interest of other moral
obligations that outweigh it in a given circumstance” (1207).

27. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1204.

28. Stahl and Emanuel, “Physicians, Not Conscripts,” 1382.

29. Ibid., 1380–81.

30. Ibid, 1383.

31. Ibid.

32. American College of Obstetricians and Gynecologists, “ACOG
Committee Opinion No. 385,” 1206.

33. Stahl and Emanuel, “Physicians, Not Conscripts,” 1383.

34. See John Rawls, Political Liberalism (New York: Columbia University
Press, 1993).

35. Timothy E. Quill and Howard Brody, “Physician Recommendations and
Patient Autonomy: Finding a Balance between Physician Power and Patient
Choice,” Annals of Internal Medicine 125, no. 9 (1996): 765.

36. See Steve Sternberg, “Diagnosis: Burnout,” U.S. News & World Report,
September 8, 2016. See also Tait D. Shanafelt, Omar Hasan, Lotte N.
Dyrbye, Christine Sinsky, Daniel Satele, Jeff Sloan, and Colin P. West,
“Changes in Burnout and Satisfaction with Work-Life Balance in
Physicians and the General US Working Population between 2011 and
2014,” Mayo Clinic Proceedings 90, no. 12 (2015): 1600–1613.

37. President’s Commission for the Study of Ethical Problems in Medicine
and Biomedical and Behavioral Research, “Making Health Care Decisions:
The Ethical and Legal Implications of Informed Consent in the Patient-
Practitioner Relationship,” October 1982, 38,
https://repository.library.georgetown.edu.

38. Martin Luther King Jr., “A Proper Sense of Priorities” (speech),
February 6, 1968, Washington, DC, text available at
http://www.aavw.org/special_features/speeches_speech_king04.html.

39. This was said to one of the authors (Curlin) in conversation.

INDEX

ability, 48–49

abortion

American Medical Association on, 211n5

autonomy and, 67

beginning of human being’s existence and, 115–17

consent and, 172

contraception and, 208n5

contraception vs., 98–99

defining, 126

in ectopic pregnancy, 126, 129–31

embryology and, 116–17

end-of-life killing vs., 172–73

Golden Rule and, 118

Hippocratic Oath and, 113–14

intention and, 120–21, 128, 130

justice and, 112

life-saving, 124–29

personhood and, 121–24

privacy and, 119–20

in provider of services model, 112, 119

as public matter, 119–20

rule of double effect and, 124–29

as self-defense, 129

in Way of Medicine, 113–14

See also contraception

advance directives, 58–59, 146–47. See also end-of-life medicine; last-
resort options

ANH. See artificial nutrition and hydration (ANH)

anorexia, 110

antibiotics, 56–58, 85–87

Anticipatory Corpse, The (Bishop), 9

Aquinas, Thomas, 129, 187, 203n3, 207n3, 209n10

Aristotle, 8, 20–21, 25, 34, 107, 188

artificial nutrition and hydration (ANH), 160–65

assisted reproduction, 99–104

assisted suicide, 69–70, 170–72. See also end-of-life medicine; last-resort
options

Austriaco, Nicanor, 128

authenticity, 67, 119, 141

authority

autonomy vs., 72–73, 76–77

end-of-life medicine and, 139, 150

of expertise, 73

limits of, 77–78

in provider of services model, 3, 75

solidarity and, 63

vocation and, 75–76

in Way of Medicine, 78

autonomy, 205n1

assisted suicide and, 69–70, 170–71

authority vs., 72–73, 76–77

commitments and, 71–72

end-of-life medicine and, 141

as greatest human good, 70

importance of, 70–72

in Kant, 67

in medical ethics, 65–66

misunderstandings about, 66–70

paternalism and, 52

principlism and, 14, 41, 43

in provider of services model, 2, 69

radical, 67–70

respect vs., 44

solidarity and, 62

in Way of Medicine, 69

Bacon, Francis, 8

Beauchamp, Thomas, 14, 41, 43, 199n2, 204nn8–10

Belmont Report, 41, 206n1

beneficence, 14, 41, 43, 55

Bentham, Jeremy, 37

Berry, Wendell, 30

Bishop, Jeffrey, 8–9

Boorse, Christopher, 202n9

Brody, Howard, 77, 205n1, 217n21

Brown, Jerry, 171

Burt, Robert, 171–72, 174

Byock, Ira, 167

calling, 46–47, 204n14

categorical imperative, 43–44, 67, 206n3

Cavanaugh, Thomas, 98

cessation of eating, 165–66

Childress, James, 14, 41, 43, 199n2, 204nn8–9

clinicians. See physician(s)

closeness, intention and, 87–88

Clouser, K. Danner, 42

commitment, 17–20, 46–48, 71–72, 83–84, 89–91, 96, 138–41, 153–57,
185–89

conscience, 3–4, 89, 181, 187–89, 217n22

conscientious medicine

professional responsibility and, 189–92

in provider of services model, 181–85

and refusal of patient requests, 179–87

in Way of Medicine, 185–94

consent, 14, 44, 66, 172, 181, 195, 206n1

consequentialism, 37–38

consumerism, 2

contraception

abortion and, 208n5

abortion vs., 98–99

autonomy and, 54–55

in clinical setting, 94–99

health and, 96–98

justice and, 95

in provider of services model, 55, 94–95

refusal to fill prescriptions for, 217n21

refusal to prescribe, 184

as self-prescribed, 92–93

in Way of Medicine, 96–99

See also abortion

Darwall, Stephen, 67

death. See advance directives; end-of-life medicine

delirium, 97, 167, 169

demoralization, 2–3, 181, 195

Descartes, René, 8

doctor-patient relationship

balance in, 53–54

as community, 62

paternalism in, 52–53

solidarity in, 60–63

trust and, 64

doctors. See physician(s)

do-not-resuscitate (DNR), 58–59. See also advance directives; end-oflife
medicine; last-resort options

double effect. See rule of double effect

DPOAHC. See durable power of attorney for health care (DPOAHC)

durable power of attorney for health care (DPOAHC), 146, 148

dying, autonomy and, 68–70, 206n1. See also end-of-life medicine; last-
resort options

eating, voluntary cessation of, 165–66

ectopic pregnancy, 126, 129–31

Edelstein, Ludwig, 200n8

Emanuel, Ezekiel, 180, 182–83, 190–91, 217n16

embryology, 116–17. See also abortion

end-of-life medicine

advance directives, 58–59

assisted suicide, 69–70

authority and, 139, 150

autonomy and, 141

case study, 151–58

decision-making capacity and, 145–51

health and, 134–36, 142–43

intention and, 151–58

patient options and, 140–42

physician options and, 136–40

proportionality and, 151–58

in provider of services model, 135–36, 143–44, 147, 152

substituted judgment and, 149–50

suffering and, 142–45

in Way of Medicine, 136, 138–40, 147, 152–53, 155–56

See also last-resort options

Engelhardt, H. Tristram, 2, 9

equilibrium, reflective, 42

ethics. See Kantian ethics; medical ethics; practical ethics; practical reason

eugenics, 24

euthanasia, voluntary, 170–72. See also end-of-life medicine; last-resort
options

expertise, authority of, 73

expressive individualism, 67–68

fairness, 40–41, 81–83, 173–74, 207n1

feeding tube. See artificial nutrition and hydration (ANH)

fertility. See contraception; reproduction

Finnis, John, 73

flourishing, 6, 35–36, 71, 199n1, 203n3

Gawande, Atul, 145

gender

autonomy and, 68

transition, 104–10

Gert, Bernard, 42

gestational surrogacy, 102–3

Goldblatt, Anne Dudley, 92–93

Golden Rule, 40–41, 82–83, 118

Gomez-Lobo, Alfonso, 204n11

good(s)

abortion and, 117–18

action and, 35–36

autonomy as, 70

basic, 36, 43, 45

commitments and, 46

common, 60

consequentialism and, 37–38

destruction of, for “greater,” 39–40

in first moral principle, 38–41

internal vs. external, 15–18

practical reason and, 36, 79–80

in provider of services model, 62

rule of double effect and, 79–80

that medicine is for, 20–24

vocation and, 45–50

Hauerwas, Stanely, 9, 200n11

health

absence of suffering vs., 29

activity and, 27

in Aristotle, 20–21

consciousness and, 169

in context of organism, 27–28

contraception and, 96–98

defining, 24–31

end-of-life medicine and, 134–36, 142–43

ethics and, 5–6

as good for which medicine exists, 20–22

as holistic, 26–27

inducements and, 5

mental, 29–30

objectivity and, 25

in provider of services model, 4

risk vs., 28–29

rule of double effect and, 80

wakefulness and, 169

in Way of Medicine, 4–5

women’s, 93

Hippocrates, 213n7

Hippocratic Oath, 5, 21, 42–43, 113–14

holism, 62–63, 143

hospice, 144–45, 215n25. See also end-of-life medicine

humility, 29, 63

hydration, artificial, 160–65

individualism, expressive, 67–68

inducements, 5

informed consent, 181, 195, 206n1

integrity, 61–62

intention, 79–80, 84–88, 120–21, 128, 130, 151–58, 207n3, 208n6

intersex, 106–7

in vitro fertilization (IVF), 100, 103–4

IVF. See in vitro fertilization (IVF)

Jonsen, Albert, 42–43

judgment

in provider of services model, 3–4

substituted, 149–50

justice, 14

abortion and, 112

contraception and, 95

doctor-patient relationship and, 54–55

last-resort options and, 173–74

principlism and, 41

Kant, Immanuel, 66–67

Kantian ethics, 43–45. See also categorical imperative

Kass, Leon, 25, 27, 52, 133–34, 200n11, 202n14

Kennedy, Anthony, 67

King, Martin Luther, Jr., 196

last-resort options

abortion vs., 172–73

and artificial nutrition and hydration, 160–65

fairness and, 173–74

justice and, 173–74

physician-assisted suicide, 170–72

practical reason and, 172–73

in provider of services model, 159–60

sedation to unconsciousness, 166–69

solidarity and, 176

trust and, 174–78

voluntary cessation of eating, 165–66

in Way of Medicine, 159

law, natural, 6, 34–35, 119–20, 203n3, 207n3

Lewis, C. S., 6

life plan, rational, 46–47

living will, 146. See also end-of-life medicine

MacIntyre, Alasdair, 14–15, 19

marriage, 207n2

maximization, 37–38

Maynard, Brittany, 68, 170–71, 176–77, 206n1

McHugh, Paul, 210n13

McKenney, Gerald, 8–9, 200n11, 201n16

McMath, Jahi, 40–41

medical ethics

autonomy in, 65–66

“four principles” of, 2

health and, 5–6

See also practical reason

medicine

as calling, 46–47, 204n14

defined, 2

future of, 194–96

goods for which it exists, 20–24

health as goal of, 20–22

as practice, 4–5, 14–20

provider of services model for, 2–4

Way of Medicine, 4–6

mental health, 29–30, 202n14, 210n13

Mill, John Stuart, 66

Moore, K. L., 116

moral principle, first, 38–41

moral worth, 117–19

NaPro technology, 102

natural law, 6, 34–35, 119–20, 203n3, 207n3

Nazi Germany, 24

Nicomachean Ethics (Aristotle), 34

Night, Susan S., 217n21

nonmaleficence, 14, 41, 43, 53–56, 100, 112, 135–36, 161, 184, 190, 199n2

nutrition, artificial, 160–65

objectivity, 25–26, 202n9

opioids, 89–90, 151

pain medications, 89–90

palliative care, 143–44, 166. See also end-of-life medicine

paternalism, 52–53, 65–66, 94, 195

patients

commitment to, 18

solidarity with, 19, 60–63

vulnerability of, 21–22

See also autonomy; doctor-patient relationship

patients’ rights movement, 51–52

Pellegrino, Edmund, 21, 42, 208n6

Persaud, T. V. N., 116

personhood, 121–24

physician(s)

abortion and, 113–14

authority of, 73

as calling, 47

in end-of-life medicine, 136–40

Golden Rule and, 40

goods received by, for practice, 15–16

paternalism of, 52–53

patients’ rights movement and, 51–52

refusal of patient requests by, 179–87

satisfaction of, with work, 16

solidarity with, 60–63

suffering and, 29

trust of, 22, 64

See also doctor-patient relationship

physician-assisted suicide, 68–70, 170–72, 206n1. See also end-oflife
medicine; last-resort options

physician orders for life-sustaining treatment (POLST), 146

Planned Parenthood v. Casey, 67, 99

pluralism, 79, 192–94

POLST. See physician orders for life-sustaining treatment (POLST)

practical ethics, 34–35

practical reason

conscience and, 187

consequentialism and, 37–38

goods and, 36, 79–80

Kantian ethics and, 43–45

last-resort options and, 172–73

principlism and, 41–45

requirements of, 5–6, 33–50

vocation and, 45–50

practice

defined, 14–15

and internal vs. external goods, 15–18

medicine as, 4–5, 14–20

prayer, 63, 205n7

pregnancy. See abortion; contraception; ectopic pregnancy; reproduction

President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research, 53, 196

principlism, 14, 41–45, 82, 95

proceduralism, 54

professional responsibility, 180–81, 186, 188–92

proportionality, 88, 151–58, 208n6

provider of services model (PSM), 2–4

abortion in, 112, 119

advance directives in, 58

antibiotics in, 56–57

artificial nutrition and hydration in, 161

assisted reproduction in, 99–100, 102–3

authority in, 75

autonomy in, 69

conscience and, 188–89

contraception in, 55, 94–95

end-of-life medicine in, 135–36, 143–44, 147, 152

goods in, 62

health in, 4

in historical context, 8–9

last-resort options in, 159–60

paternalism and, 52–53

prayer in, 205n7

principlism in, 14

professional responsibility in, 190

and refusal of patient requests, 181–85

right-is-prior-to-the-good maxim and, 44–45

transgender in, 105–6, 109

Way of Medicine vs., 13–14

PSM. See provider of services model (PSM)

Quill, Timothy E., 77, 171, 205n1

race, hospice use and, 215n25

rational life plan, 46–47

Rawls, John, 44–45

reflective equilibrium, 42

reproduction

assisted, 99–104

topics in, 91

transgender and, 210n14

See also contraception

respect, 44, 63, 67, 117–19

responsibility, professional, 180–81, 186, 188–92

right-is-prior-to-the-good, 44–45

role-conflation harm, 98

rule of double effect

abortion and, 124–29

articulation of, 88

clinical importance of, 89–90

closeness and, 87–88

fairness and, 81–83

goods and, 79–80

health and, 80

intention and, 79–80, 84–88, 207n3, 208n6

principlism and, 82

proportionality and, 88, 208n6

side effects and, 81–88

vocation and, 83–84

Second Vatican Council, 50

sedation to unconsciousness, 166–69

self-defense, 129

shalom, 30, 203n17

side effects, 81–88

Siegler, Mark, 53, 73–74, 92–93, 205n1

solidarity, 19, 59–63, 163, 176

Stahl, Ronit, 180, 182–83, 190–91, 217n16

subspecialization, 61, 205n6

substituted judgment, 149–50

suffering

end-of-life medicine and, 142–45

health vs. absence of, 29

last-resort options and, 167–68

suicide, assisted, 68–70, 170–72, 206n1. See also end-of-life medicine; last-
resort options

Sulmasy, Daniel P., 208n6

surrogacy, gestational, 102–3

surrogate decision-making, 148–51

Tao, 6, 10

Thomasma, David, 21, 42, 217n22

Thomson, Judith Jarvis, 120–21

Torchia, Mark, 116

To Relieve the Human Condition (McKenney), 8–9

Toulmin, Stephen, 42–43

transgender, 68, 210nn13–14

transgender rights, 104–10

trust, 22, 52, 59–60, 64, 174–78

trustworthiness, 18–19

Tuskegee experiments, 24, 36, 40, 82–83

unconsciousness, sedation to, 166–69

utilitarianism, 37

vocation, 45–50, 75–76, 83–84, 141, 204n14, 207n1, 207n4

vulnerability, 21–22, 64, 125, 178

Way of Medicine, 4–6

abortion in, 113–14

advance directives in, 59

antibiotics in, 56–57

artificial nutrition and hydration in, 161–62

assisted reproduction in, 100–104

authority in, 78

autonomy in, 69

contraception in, 55, 96–99

end-of-life medicine in, 136, 138–40, 147, 152–53, 155–56

last-resort options in, 159

pluralism and, 192–94

provider of services model vs., 13–14

reason and, 5–6

refusal of patient requests in, 183, 185–87

sedation to unconsciousness in, 167–68

as tradition, 9–11

transgender in, 106–10

virtues of, 186–94

voluntary cessation of eating in, 166

well-being, 2, 37, 91, 93, 160, 180, 199n1. See also flourishing

will, living, 146. See also end-of-life medicine

women, 92. See also abortion; contraception; reproduction

women’s health, 93

Zaner, Richard, 178

FARR CURLIN is Josiah C. Trent Professor of Medical Humanities at
Duke University. He holds appointments in the School of Medicine; the
Trent Center for Bioethics, Humanities and History of Medicine; the
Divinity School; and the Kenan Institute for Ethics. Curlin has
authored more than one hundred and thirty articles and book chapters
on medicine and bioethics.

CHRISTOPHER TOLLEFSEN is the College of Arts and Sciences
Distinguished Professor of Philosophy at the University of South
Carolina. He is the author and editor of numerous books, including
Embryo: A Defense of Human Life and Lying and Christian Ethics.

The Way of Medicine

Title

Copyright

Dedication

Contents

Preface: A Perplexed Physician

Acknowledgments

Introduction: A Profession in Crisis

One The Way of Medicine

Two The Requirements of Practical Reason

Three The Doctor-Patient Relationship

Four Autonomy and Authority

Five The Rule of Double Effect

Six Sexuality and Reproduction

Seven Abortion and Unborn Human Life

Eight Medicine at the End of Life

Nine Last-Resort Options

Ten Conscientious Medicine

Notes

Index

WHAT IT MEANS TO BE
human

THE CASE FOR THE BODY IN PUBLIC BIOETHICS

O. Carter Snead

Cambridge, Massachusetts  •  London, England
2020

Copyright © 2020 by the President and Fellows of Harvard College
All rights reserved

Jacket design: Lisa Roberts
Jacket illustration: Leonello Calvetti/Science Photo Library

978-0-674-98772-2 (cloth)
978-0-674-25077-2 (EPUB)
978-0-674-25078-9 (MOBI)
978-0-674-25079-6 (PDF)

The Library of Congress has cataloged the printed edition as follows:

Names: Snead, O. Carter, author.
Title: What it means to be human : the case for the body in public bioethics / O. Carter Snead.

Identifiers: LCCN 2020011111
Subjects: LCSH: Human body—Law and legislation—United States. | Bioethics—United States. |

Abortion—Law and legislation—United States. | Human reproductive technology—Law and
legislation—United States. | Terminal care—Law and legislation—United States. | Human

experimentation in medicine—Law and legislation—United States. |Medical laws and legislation—
United States.

Classification: LCC KF390.5.H85 S64 2020 | DDC 174.20973—dc23
LC record available at https://lccn.loc.gov/2020011111

https://lccn.loc.gov/2020011111

for Leigh

CONTENTS

Introduction
1. A Genealogy of American Public Bioethics
2. An Anthropological Solution
3. In Cases of Abortion
4. Assisted Reproduction
5. Death and Dying
Conclusion

NOTES

ACKNOWLEDGMENTS

INDEX

Introduction

In America, law and policy are made through often messy processes of
discourse, deliberation, and democratic forms of decision-making. This
entails grappling with contested matters of deep importance, including
competing and divergent visions of how we should live and what we owe to
one another. This is certainly the case for public bioethics—the governance
of science, medicine, and biotechnology in the name of ethical goods.

In our public bioethics discourse, contending sides frequently invoke
abstract principles or rely on premises that do not reflect the full complexity
of lived reality. This, in turn, leads to the adoption of laws and policies that
fail to address the full range of human needs, often to the severe detriment
of the weakest and most vulnerable. But what if we could create an
alternative governing vision that stems from a shared foundational
understanding of human experience and identity? What if the law and
policy of American public bioethics accurately reflected our lived
experience, shared values, hopes, fears, and needs? What if there was a new
way of governing ourselves on matters touching the most intimate and
defining issues facing humankind? This book aims to offer such a new path
forward for public bioethics, rooted in what it means to be and flourish as a
human being, in light of what and who we really are.

Public bioethics is fundamentally concerned with human vulnerability,
dependence, frailty, and finitude. It is about procreation, pregnancy, babies,
wasting illness, devastating injury, desperate enrollees in clinical trials,
fearful patients, the disabled, the elderly, the dying, and the dead. Public
bioethics is uniquely complex and complicated, dealing with novel and
powerful scientific techniques, clinical practices, and biotechnologies
applied in service of “health” and “wholeness”—concepts that are both

elusive and disputed. Public bioethics is a realm of strong and often bitter
disagreement, touching as it does on intimate and essential matters such as
the meaning of parenthood, obligations to children and our elders, the
claims of the sick and disabled, our freedom, our flourishing, our very
conception of self, as well as the boundaries of the moral and legal
community. It involves literal life and death issues such as the core “vital
conflicts” over the law governing abortion, assisted reproductive
technology, and end of life care. And there are set dichotomies of
conservative versus liberal and secular versus religious that bring us even
further from agreement or a shared understanding. How, then, should we
seek to govern ourselves in this complex, contested, and vital domain?

To govern ourselves wisely and humanely, we must start at the
beginning, namely, the normative foundation for law and policy in this area.
We must begin with what it means to be human.

This book will argue that the current law concerning the core “vital
conflicts” of American public bioethics is grounded in a gravely incomplete
and thus false vision of human identity and flourishing. It is a vision that
defines the human being fundamentally as an atomized and solitary will. It
equates human flourishing solely with the capacity to formulate and pursue
future plans of one’s own invention. By contrast, the law in this domain
views the natural world and even the human body itself as merely inchoate
matter to be harnessed and remade in service of such projects of the will.

But human beings do not live as mere atomized wills and there is more
to life than self-invention and the unencumbered pursuit of a destiny of our
own devising. The truth is that persons are embodied beings, with all the
natural limits and great gifts this entails. We experience our world,
ourselves, and one another as living (and dying) bodies. Because we are
bodies, vulnerability, mutual dependence, and natural limits are inextricable
features of our lived human reality. And, for reasons that will be explored
below, our embodiment situates us in a particular relationship to one
another, from which emerge obligations to come to the aid of vulnerable
others, including especially the disabled, the elderly, and children. But
because the law governing several of the core vital conflicts of American
public bioethics rests on a vision of human identity and flourishing that

does not consider embodiment as essential to its account of the person, it
fails to recognize these obligations, and leaves the weakest and most
vulnerable members of the human community invisible and unprotected.

As is true for all areas of law and policy, if public bioethics is to
effectively protect and promote the flourishing of human beings, it must be
rooted in a conception of human identity that corresponds to embodied,
lived reality. Public bioethics must therefore be grounded in the whole truth
of who we are and how we stand in relation to one another as vulnerable,
mutually dependent, finite, and embodied beings.

Accordingly, this book will reframe and resituate three principal
contemporary issues of public bioethics within what will be termed an
“anthropological” paradigm. Law and public policy are irreducibly
normative, aiming at goods to be pursued and promoted, as well as harms to
be avoided or remediated. Despite efforts to avoid appeals to
“comprehensive” visions of the good in policy debates and lawmaking, all
legislative, regulatory, and judicial authorities, along with the public and
academic discourse that ground and sustain them, unavoidably rely on
contested but mostly undeclared visions of what it means to be and thrive as
a human being. This is, a fortiori, true of public bioethics. For this reason,
the first task at hand is to subject the core disputes of American public
bioethics to a searching, inductive anthropological analysis that will
uncover, illuminate, and critique the conception of human identity and
flourishing that underwrites current law and policy.

To understand why a new framework is needed and how it might be
integrated into law and policy, we must first explore the history and
practicalities of American public bioethics. Accordingly, Chapter 1 traces
the historical trajectory of public bioethics in the United States with special
attention to three signal events at its inception that illustrate the legal,
ethical, and political paradigm that persists to the present day. Chapter 2
reflects on the problem (and solution) of anthropology—offering an account
of the book’s primary mode of inquiry, and an exploration and critique of
“expressive individualism,” the vision of human identity and flourishing
that animates key conflicts of American public bioethics. Following that is
a more in-depth exploration of these perennial vital conflicts of American

public bioethics at the beginning and end of human life, including the
disputes over: the law of abortion (Chapter 3); the regulation of assisted
reproduction (Chapter 4); and issues concerning the law of end-of-life
decision-making, with a special focus on the refusal or termination of life-
sustaining measures, and physician-assisted suicide (Chapter 5).

These critiques will show that American law and policy in these
domains rest on an image of the human being that does not reflect the lived
experience of embodied human reality in all its complexity. Instead, it relies
on a partial and incomplete vision of human identity that closely tracks
what both sociologist Robert Bellah and philosopher Charles Taylor have
identified as “expressive individualism,” in which persons are conceived
merely as atomized individual wills whose highest flourishing consists in
interrogating the interior depths of the self in order to express and freely
follow the original truths discovered therein toward one’s self-invented
destiny.1 Expressive individualism, understood in this sense, equates being
fully human with finding the unique truth within ourselves and freely
constructing our individual lives to reflect it.

As it emerges in American public bioethics, this anthropological frame
decisively privileges cognition and will in defining personal identity,
supplies the content for normative (and legal) concepts such as “health” and
“human dignity,” and dictates the very boundaries of the moral and legal
community. It dualistically distinguishes will and cognition from the body
and treats the body itself as primarily a tool for pursuing one’s own freely
chosen goals. It understands human relationships as transactional, formed
by agreements, promises, and consent for the mutual benefit of the parties
involved.

People thus encounter one another as collaborative or contending wills,
pursuing their own individual goals. Claims of unchosen obligations and
unearned privileges are unintelligible within this framework. In this
paradigm, the goods of autonomy and self-determination enjoy pride of
place among ethical and legal principles. Law and government exist chiefly
to create the conditions of freedom to pursue one’s invented future,
unmolested by others and perhaps even unimpeded by natural limits.

It is a vision that rejects the teleological conception that “natural
givens” are a useful guide to interpreting the world of physical reality and
embraces a more modern and instrumental vision of humankind’s
relationship to the natural world, and indeed, to the human body itself.

Because this regnant anthropology of American public bioethics is, to
borrow the words of Alasdair MacIntyre, “forgetful of the body,” it is
inadequate as a foundation for laws and policies responsive to the lived
realities of vulnerability, mutual dependence, and finitude that comprise the
human context of this domain.2 It is true, of course, that human beings exist
as individuated, free, and particular selves. And there can be great value in
the exploration of the vast interior of the self to discover and express the
authentic and original meaning found there that serves as a guide to one’s
future plans, and even as a transgressive witness against wrongheaded and
repressive customs.

But this is only a partial and incomplete picture of the fullness of lived
human reality. The anthropology of expressive individualism alone cannot
make sense of our fragility, neediness, and natural limits. Worse still, it
cannot offer a coherent, internally consistent account of our obligations to
vulnerable others, including children, the disabled, and the elderly.

What is needed, and what this book offers, is an anthropological
corrective, an augmentation to the foundations of American public
bioethics. To govern ourselves wisely, justly, and humanely, we must begin
by remembering the body and its meaning for the creation and
implementation of law and policy.

To that end, this book articulates and defends a more capacious account
of human identity that embraces not only the truth and reality of human
freedom and particularity, but also the vulnerability, mutual dependence,
and finitude that result from our individual and shared lives as embodied
beings. Building upon this richer anthropological account, the book argues
—following Alasdair MacIntyre—that for both their basic survival and their
flourishing, embodied (vulnerable) human beings depend on networks of
“uncalculated giving and graceful receiving” constituted by other people
who are willing to make the good of others’ their own, regardless of what
this might offer by way of recompense.3 By first depending on these

networks, and then participating in them, individuals become the sort of
people who can care for others in this same way. This transformation of
persons from needy consumers of unconditional care and support to mature
uncalculating caregivers for others, of course, guarantees the sustainability
of these essential networks. But, more importantly, it also helps people to
develop into what an embodied being should become, namely, the kind of
people who make the good of others their own. Put most simply and
directly, by virtue of their embodiment, human beings are made for love
and friendship.

The cultivation of memory and the moral imagination are a crucial
means of understanding ourselves more fully and seeing “the other” to
whom we owe obligations of care and protection. If we remember that we
are embodied, we will better understand ourselves as whole, living
organisms rather than mere wills inhabiting instrumental bodies (“re-
membering” as re-integration of body and mind). If we remember that our
embodiment renders us vulnerable and dependent upon the beneficence of
others for our very lives and self-understanding, we will more clearly grasp
our obligations of just generosity and reciprocal indebtedness to those
others who are likewise vulnerable (“re-membering” as re-binding
ourselves to one another in the body of the community). If we remember
that as living human bodies, we all pass through stages of life when our
will, judgment, strength, and beauty are inchoate, obscured, compromised,
or annihilated, we will be able to more readily recognize others as fellow
members of the human community with claims on us, despite the
sometimes distressing disguises of age, illness, and disability
(“remembering” as an essential tool of recognition).

The pathway to a richer, more human public bioethics requires not only
acknowledging the limits and necessities of embodiment but embracing the
great gifts and opportunities that only embodied human life affords. Thus,
this book proposes a new array of goods, practices, and principles suitable
for governing a polity of relational, needful, finite, and embodied persons.
Drawing upon MacIntyre’s “virtues of acknowledged dependence,” these
include the practices of just generosity, hospitality, misericordia
(accompaniment of others in their suffering), gratitude, humility, Michael

Sandel’s (and William May’s) “openness to the unbidden,” tolerance of
imperfection, solidarity, dignity, and honesty.4 In other words, the practices
of authentic friendship.

After applying this analysis and argument to the current law of
abortion, assisted reproduction, and end-of-life decision-making, the book
concludes by arguing that the proposed anthropological vision rooted in
human embodiment is truer, better, and more beautiful than the alternative
that currently grounds these vital conflicts of American public bioethics.
Unlike the regnant paradigm that undergirds the law, this conception of
human identity and flourishing makes sense of our embodiment,
vulnerability, and complex relationships to vulnerable others, including
especially children, the disabled, and the elderly. It also enables a more
coherent account of both equality and human freedom.

This discussion serves as a first point of entry into the thorny questions
and complexities of how a pluralistic nation can and should integrate
normative concepts regarding the nature of human identity and flourishing
into law and policy. And it will offer general principles and policy goals
that follow from the proposed augmentation of the anthropological
foundations of public bioethics.

Some of these ideas may prove surprising and challenging both for
those who identify themselves as liberal or progressive, as well as for those
who describe themselves as conservative and libertarian. Taking seriously
the meaning of embodiment for public bioethics leads to conclusions that
do not fit easily—or perhaps at all—into current American political
categories. But the hard work of translating the general principles and
prescriptions of a more human public bioethics into concrete, operational
laws and policies must wait for the next phase of inquiry.

Lastly, before proceeding, it is worthwhile to recall that even though it
draws upon works of philosophy, political theory, science, and even
literature, this is, finally, a book about the law. The discussion concerns the
anthropological premises and assumptions on which the law relies as
revealed through an inductive analysis of its doctrine and application. There
are no claims made about the motivations, commitments, or premises of
individual people in their decision-making. Of course, the law shapes and

reflects the goods people hold dear and the harms they seek to avoid, and so
the analysis that follows is relevant to personal decision-making. But the
anthropological premises of the law and that of the individual person are
not necessarily the same. The inquiry and argument of this book is focused
on the former.

Finally, this book is a proposal of an alternative governing vision that
resonates more truly with our lived experience, shared values, hopes, fears,
and needs. Accordingly, the criteria for evaluating the proposal should be
tailored to the standards of the public square, where the aim is political
persuasion rather than apodictic philosophical proof. There are no
demonstrable first principles offered here—only axioms, postulates, and
propositions, to be judged by reason and experience. But this is the way of
law, politics, and public policy. In the end, this book is a proposal offered in
the spirit of friendship, anchored in the firm belief that we can only govern
ourselves wisely, humanly, and justly if we become the kind of people who
can make each other’s goods our own.

1

A Genealogy of American Public Bioethics

The core argument of this book is that the normative grounding of
American public bioethics is a vision of human identity and flourishing that
does not fully reflect the lived reality in which the relevant legal and
political issues arise. American law and policy concerning bioethical
matters are currently animated by a vision of the person as atomized,
solitary, and defined essentially by his capacity to formulate and pursue
future plans of his own invention. The “natural” world and even the human
body are, by contrast, understood as merely inchoate matter to be harnessed
and remade in service of such projects of the will. This incomplete and thus
false picture of life as humanly lived makes a very poor foundation for the
law and policy of bioethics. The truth is that persons live (and die) as
embodied beings, with all the natural limits and great gifts this entails.
Thus, the real human context in which the issues of public bioethics emerge
is characterized by vulnerability, mutual dependence, and finitude. The
asymmetry between the law’s current anthropological premises and the
lived reality that it seeks to govern renders American public bioethics
incapable of responding wisely, justly, and humanely to many of the pitched
vital conflicts that define this domain. Indeed, because of its inadequate
vision of human identity and flourishing, the relevant law and policy cannot
offer a coherent account of our own vulnerability, dependence, and
relationships to vulnerable others, including especially children, the
disabled, and the elderly. What is needed, therefore, is an “anthropological”
corrective to resolve this asymmetry, and to integrate into public bioethics

fitting goods, practices, and virtues suitable to governing a polity of
embodied human beings.

To understand why such a corrective is needed and how it might be
integrated into law and policy, it is necessary first to explore in some depth
the unique field under consideration, namely, American public bioethics.
Accordingly, this chapter will set forth a brief thematic historical narrative
meant to illuminate the procedural, substantive, and human paradigm of
American public bioethics, established at its inception and continuing to the
present day. This genealogy will lay a general framework for the more
granular inductive anthropological analysis and critique of American public
bioethics in the chapters that follow.

WHAT IS PUBLIC BIOETHICS? HISTORY AND HUMAN CONTEXT

The story of American public bioethics is a succession of political and legal
reactions to the reported use, abuse, and exploitation of the weakest and
most vulnerable members of the human population. It is a history of mutual
dependence, neediness, and finitude. It is a story that begins with the
practice of human subjects research.

Why did the practice of human subjects research precipitate the crises
from which American public bioethics emerged in response? The answer
lies in its very definition and purpose, which reveal that despite its
importance for the pursuit of health and wholeness, it is a species of activity
fraught with potentially profound ethical and personal risks to all involved.

Human subjects “research” is a term defined in federal law as
“systematic investigation … designed to develop or contribute to
generalizable knowledge.”1 It is essential for understanding human
biological functioning and the mechanisms of action of drugs, devices, and
medical interventions that may (or may not) offer safe and efficacious
means of preventing or treating diseases and injuries. When directed toward
common lethal diseases, such research can save lives. In the face of
existential public health threats, human subjects research may save
communities or even entire nations. Unsurprisingly, biomedical research
thus enjoys widespread public support, and its most prominent practitioners
are sometimes rightly hailed as genuine heroes for the common good.

However, the primary goal of this research is not for researchers to care
for and cure those who serve as subjects. Instead, researchers use human
subjects as tools to evaluate untested interventions or to understand the
natural progress of disease without treatment. Often the human subjects
involved are profoundly vulnerable—gravely ill and suffering. While both
researcher and subject surely hope that the latter will receive a benefit
through his participation, this is not the fundamental aim of the endeavor.
The goal is to obtain information about the safety and efficacy of possible
medical treatments. The human subjects involved are, by design, means and
instruments to the development of this knowledge.

Accordingly, the aims and metrics for success are not the same for
clinicians and researchers. Clinicians are single-mindedly focused on
restoring their patients to health and wholeness. The interests and goals of
doctor and patient are thus perfectly aligned, even in the application of
experimental therapy. The success of clinical care is measured by healing
or, failing that, diminished suffering. By contrast, the researcher seeks
generalizable knowledge through the rigorous and systematic application of
the scientific method. For the researcher, an experiment definitively
showing that an untested medical intervention is ineffective or even
dangerous is successful in that it produces useful generalizable knowledge.

The challenge for human subjects researchers is to find a way to
conduct this research while remaining faithful to foundational principles of
ethics, justice, and human rights that bind us all. They traditionally do so by
securing informed consent. Providing such consent allows subjects to freely
participate in the research enterprise, knowing and appreciating the risks to
life, limb, and the expectations involved. Thus, by the exercise of their own
autonomy and self-determination, the human subjects themselves transform
the nature of the transaction from objectification to collaboration.

But does this protect human subjects from exploitation and abuse?
What about those who are incapable of informed consent because of
cognitive impairments resulting from immaturity, disability, low
intelligence, or lack of sophistication? What about those subjects whose
capacity to consent is impaired by circumstances such as incarceration,
serving as soldiers bound to strict rules of obedience and chain of

command, or belonging to a community beset by systemic racial injustice?
What about those who are so desperate for a cure that their perceptions and
understanding are compromised? These are serious questions that emerge in
dramatic fashion in the historical narrative of American public bioethics.

Therefore, in its essence, research involving human subjects presents
an ethically fraught and volatile human context, rife with potential peril for
all involved. Even under the best possible circumstances, research involving
human subjects involves management and distribution of serious risks, and
the engagement with potentially profound conflicts involving justice,
human dignity, freedom, and the common good. At its worst, research
involving human subjects can be the occasion for the darkest forms of
exploitation, abuse, and deep violence. It is from this crucible that
American public bioethics emerged.

Scholars and commentators mark the beginning of American public
bioethics in different ways, but there are three signal moments that
particularly illustrate how crucial human embodiment is for wise and just
governance in this domain. Moreover, these events set in motion a cascade
of political and legal responses that laid the foundation for a framework that
endures today. The first was the publication by the New England Journal of
Medicine of Henry K. Beecher’s “Ethics and Clinical Research,” a 1966
article detailing twenty-two examples of unethical experiments involving
human subjects.2 The second was the publication on July 25, 1972, of the
details of the infamous federal “Tuskegee Study of Untreated Syphilis in
the Negro Male” in the Washington Evening Star.3 Third, on April 10, 1973,
an article by Victor Cohn published on the front page of the Washington
Post reported for the first time on debates at the National Institutes of
Health on whether to fund research involving “newly delivered human
fetuses—products of abortions—for medical research before they die.”4

Each of these three episodes began with a public scandal involving the
abuse of vulnerable individuals treated as objects by researchers or
clinicians, followed by a governmental response. This response included
information gathering and debate with discussion of the moral and legal
boundaries of the community, as well as the tensions between scientific
progress and respect for the dignity, autonomy, and bodily integrity of

marginalized and exploited individuals. The governmental response finally
culminated in official action such as passage of a statute, administrative
regulations, judicial decision, or issuance of an advisory report. Solutions
looked primarily to the ethical goods of autonomy and self-determination as
the key safeguards against future abuses.

BEECHER SOUNDS THE ALARM

Henry Knowles Beecher was an eminent practitioner and professor of
anesthesiology at Harvard University, and also an active clinical research
scientist. He had a profound interest in the shocking research abuses
perpetrated by the Nazi “doctors” against more than seven thousand
documented concentration camp captives, including Jews, Gypsies, Soviet
prisoners, Poles, Catholic priests, political prisoners, and homosexuals. He
carefully studied classified U.S. military documents detailing these
atrocities, along with the proceedings of the Nuremberg “Doctor’s Trial”
itself (1946–47), which culminated in the conviction of sixteen defendants,
including seven who were put to death.

During the Nuremberg Doctor’s Trial, the defendants raised the
argument that the United States was not itself a paragon of research ethics
and had its own sordid past. Indeed, on cross-examination a key witness for
the prosecution admitted that until the trial there were no human subjects
protections codified in the United States. In fact, the first such code,
“Principles of Ethics Concerning Human Beings,” was adopted by the
American Medical Association in 1946 precisely in response to the
Doctor’s Trial.

From his study of these documents Beecher was moved to explore the
lack of protections for human subjects of research in the United States as
well as the past exploitation of vulnerable populations in America. On
March 22, 1965, he delivered a lecture at the Brook Lodge Symposium for
Science Writers in Kalamazoo, Michigan (sponsored by the Upjohn
Company), detailing more than a dozen experiments conducted that
presented no therapeutic benefits to the human subjects involved and for
which no consent had been provided. His speech provoked a spirited
response both from the medical research community and the lay public.5

For the next year he continued to write and speak about the issue, as he
worked to compile a carefully documented and illustrative study meant to
demonstrate the scope and gravity of the problem.

On June 16, 1966, the New England Journal of Medicine published the
fruits of Beecher’s painstaking labors in an article with the unremarkable
title “Ethics and Clinical Research.” In the article, Beecher argued that
“unethical or questionably ethical procedures are not uncommon,” and
documented twenty-two published research papers in which human subjects
received no therapeutic benefits.6 In all but two examples, there was no
mention whatsoever of consent. Many of the human subjects were
incapable of meaningful consent due to cognitive incapacity or extenuating
circumstances. Indeed, many of the individuals affected had no idea that
they were enrolled in a biomedical research project at all. The human
subjects involved were profoundly vulnerable. These included soldiers,
indigent patients of a charity hospital, institutionalized children with severe
intellectual disabilities, the elderly, the terminally ill, and chronic alcoholics
suffering from liver disease.

The cases Beecher cited included protocols in which researchers
withheld known effective treatments, resulting in direct and grave harm to
the participants.7 For example, in one study of rheumatic fever,
investigators intentionally withheld penicillin from one hundred and nine
military servicemen with streptococcal infections. They were never
informed that they were part of an experiment. Two of these servicemen
developed acute rheumatic fever and one developed acute nephritis.8 In
another study of relapse rates of Typhoid Fever, efficacious treatment was
withheld from a group of charity hospital patients, twenty-three of whom
died “who would not have been expected to succumb if they had received
specific therapy.”9

Other cases involved the intentional exposure of subjects to infectious
diseases or other dangerous agents. The two most notorious examples
involved the “artificial induction of hepatitis … carried out in an institution
for mentally defective children” (later revealed to be Willowbrook State
School in Staten Island), and the deliberate injection of live cancer cells into
elderly patients of New York’s Jewish Chronic Disease Hospital.10 In the

first case, the parents of the cognitively disabled children acceded to the
administration of the virus, but “nothing is said of what was told them
concerning the appreciable hazards involved.”11 In the second case, the
hospitalized patients were “merely told they would be receiving ‘some
cells’ ” but “the word cancer was entirely omitted.”12

Beecher did not provide any identifying information for the researchers
or institutions involved, but the twenty-two examples cited were drawn
“from leading medical schools, university hospitals, private hospitals,
governmental military departments (the Army, the Navy, and the Air
Force), governmental institutes (the National Institutes of Health), Veterans
Administration hospitals and industry.”13 The institutions hosting the
research included such luminaries as Harvard University and the NIH
Clinical Center. These ethically suspect research projects had passed peer
review and were published in elite journals including both the New England
Journal of Medicine and the Journal of the American Medical Association.
Beecher detailed the powerful institutional and personal pressures that
induce researchers to aggressively pursue their work with human subjects,
including new sources of financial support, requirements for academic
tenure and promotion, hunger for prestige, as well as a genuine passion to
pursue knowledge for the sake of itself or to relieve human suffering.

Even though Beecher’s assessment included the assurance that
“American medicine is sound, and most progress in it soundly attained,”
and his proposed solutions were modest (he thought that calling public
attention to these ethical lapses would be a sufficient corrective), the article
shocked the medical research community and the public.14 The front pages
of major national newspapers covered the scandals and Congress directed
the National Institutes of Health to investigate. And, as will be discussed
below, Beecher’s article (and his testimony) played an essential role in the
Congressional hearings that culminated in the federal statute that led to
American public bioethics.

INJUSTICE IN TUSKEGEE

On July 25, 1972, an article appeared on the front page of the Washington
Evening Star entitled “Human Guinea Pigs: Syphilis Patients Died

Untreated,” by Associated Press reporter Jean Heller.15 The next day, this
shameful story of exploitation, deception, and neglect of hundreds of poor
black men and their families by U.S. Public Health Service researchers
dominated the headlines throughout the country. The details were shocking.
In 1932, researchers from the federal government commenced the “Public
Health Service Study of Untreated Syphilis in the Male Negro in Macon
County, Alabama.” It was to be a “natural history” study of the progression
of the devastating and deadly disease without any significant medical
intervention. The disease was rampant in Macon County, a community of
poor, mostly uneducated black sharecroppers. Indeed, Macon had the
highest syphilis rate in the nation. The researchers lured their subjects—600
men in all—with vague and deceptive advertisements promising testing and
treatment for “bad blood” for “colored people.” Of the 600 men enrolled,
301 had evidence of latent syphilis and 299 served as a control group.
Original records and protocols of the study are scant, but it is clear that the
initial plan was to study the men for six months. Later, however, the
decision was taken to follow the men until they died and perform
investigative autopsies. Ultimately, the study lasted forty years.16

Investigators never made any mention of syphilis to the participants,
nor did they disclose the then-known consequences of failing to treat the
disease. They also failed to inform participants of the known risks of
transmission of infection to sexual partners or children. There was, in fact,
no evidence whatsoever of any attempts to secure meaningful consent of
any sort. The participants were merely told that they were being tested for
“bad blood.” They were subject to invasive testing, including spinal taps.
As an inducement to participate in the study, men were offered rides to the
doctor, free lunches, and stipends to offset the costs of burial following the
investigative autopsy.17

Not only did the investigators deceive the participants and withhold
crucial information about the study and its risks, they actively took steps to
prevent the patients from obtaining needed care. The men were deprived of
effective management of their symptoms, and it has been reported that the
investigators even successfully persuaded local medical care providers
(along with their partners at the Tuskegee Institute) not to diagnose or treat

them so that the natural history of the disease could be observed without
disruption. Most shocking of all, even though penicillin was developed as a
highly effective intervention for syphilis in the 1940s and became widely
available shortly thereafter, the investigators deliberately withheld such
treatment.18

The human toll on these poor men and their families was staggering.
Many had their lives cut short by the disease. Those who survived suffered
its ravages, including severe pain, skin lesions, neurological dysfunction,
bone and joint defects, cardiovascular disease, paralysis, and dementia. Still
others unwittingly passed the disease to their spouses and children.

In 1966, a low-level U.S. Public Health Service venereal disease
researcher, Peter Buxton, learned of the study and reported his alarm to
colleagues, who almost entirely ignored him. When his superiors took no
action, he brought the story to a journalist friend who referred him to AP
reporter Jean Heller who published her findings, described in detail above,
in July 1972. A civil rights class action lawsuit was filed on behalf of
survivors against the government and was later settled for ten million
dollars.19

Alongside the ethical breaches reported by Beecher, the scandalous
injustices of Tuskegee comprise the second major precipitating event from
which American public bioethics emerged. But before turning to the
governmental responses engendered by these events, it is necessary to
consider one final scandal that further catalyzed the development of this
distinctive field of law and policy.

RESEARCH ON JUST-ABORTED, EX UTERO, BUT STILL-LIVING INFANTS

Between April 10 and April 15, 1973, the Washington Post ran three
separate front-page articles detailing a previously unreported debate at the
National Institutes of Health regarding a proposal to fund research
involving the use of “newly-delivered human fetuses—products of abortion
—before they die.”20 The first article (April 10) related that thirteen months
earlier NIH had received an internal recommendation to proceed with such
research, though it had more recently chosen to “consider the ethics of the
matter afresh” in light of the scandal of the Tuskegee syphilis study. Two

years prior, another NIH advisory committee proposed the use of such
newly-delivered aborted children provided they were of a certain age (no
more than twenty weeks), weight (no more than 1.1 pounds), and length (no
more than 9.8 inches, crown to heel). There were reports from Great Britain
and elsewhere that researchers had been “obtaining months-old fetuses for
research and keeping them alive for up to three or four days” ex utero. One
American researcher asserted that U.S. scientists were conducting similar
experiments abroad with NIH funding. This was disputed by other NIH
officials. One federal official, the scientific director for the Child Health
Institute, noted that federal support for such research is controversial
because of “an articulate Catholic minority who disagrees” and “a
substantial and articulate black minority” who oppose abortion.21

This comment proved prescient, as detailed in the second Washington
Post article published three days later (April 13), when more than 200
Catholic high school students gathered in the NIH auditorium to protest and
put pointed questions to federal officials. The protest was organized by a
group from Stone Ridge Country Day School of the Sacred Heart, led by
three students, including 17-year-old Maria Shriver, the daughter of Eunice
and Sargent Shriver, and the niece of Senator Edward Kennedy, and his
deceased brothers, the late Senator Robert and President John F. Kennedy.
(She would, of course, go on to have a distinguished career as a journalist
and serve as First Lady of California.) In response to the students, Dr.
Robert Berliner, NIH Deputy Director for Science, asserted in a written
statement that the agency “does not now support” such research and that
there are “no circumstances at present or in the foreseeable future that
would justify NIH support.”22

Two days later (on April 15), the Washington Post published yet
another article, this time describing the work of two American scientists
who had on separate occasions traveled to Finland to conduct experiments
on newly aborted, ex utero but still-living infants. One scientist, Dr. Jerald
Gaull, stated that he would remove the brain, lungs, liver, and kidneys while
the child’s heart was still beating. The other doctor (chief of Pediatrics at
Cleveland Metropolitan General Hospital) would take a blood sample while
the child was still connected to her mother by the umbilical cord. After the

cord was severed, but before cessation of the heartbeat, he would surgically
remove various organs. These scientists justified their practices first by
appealing to the useful knowledge such experiments might yield in service
of maternal-fetal health, and second, because the just-aborted infants were
too biologically immature (given their under-developed lungs) to survive
outside of the womb for an extended period of time.23

Such scientists would travel abroad to countries where abortions were
performed later in pregnancy by caesarean section, affording ready access
to newly-removed and still-living neonates. Dr. Gaull indicated that he had
traveled to Finland for a period of a month, during which time he could
perform five or six procedures per day. He stated that he and colleagues had
“even studied the whole intact fetus, injecting radioisotopes and following
certain chemical reactions. We have in Europe studied the transfer of amino
acids from mother to fetus while the umbilical cord was still intact.”
Another scientist, Dr. Abraham Rudolph, injected “radioactively labeled
microspheres” into an intact living post-abortion infant still attached to her
mother by the umbilical cord in order to study blood circulation in the fetus.
Another scientist interviewed suggested that dozens of researchers
conducted similar experiments. A 1971 NIH nonfederal study section
recommended that researchers be allowed to artificially maintain the life of
post-abortion neonates for at least three or four hours. This proposal does
not appear to have been accepted as formal NIH policy, though NIH-funded
researchers seem to have engaged in research on still-living aborted
neonates abroad.24

Published articles in scholarly journals likewise confirmed the use and
destruction of living newly aborted babies in research, including
experiments that intentionally extended their lives ex utero solely for the
sake of the investigation. One such experiment was reported in the
American Journal of Obstetrics and Gynecology, and involved efforts to
develop an artificial placenta.25 Another paper published in the Transactions
of the American Pediatric Society described the decapitation of living
newly aborted ex utero infants (at 12–20 weeks gestation) followed by
perfusion of their brains with chemical markers in order to study fetal brain
metabolism.26

Much of the lay public was shocked by the reports of these
experiments, and NIH leaders quickly sought to reassure them that these
were not sponsored projects that enjoyed the support of federal taxpayer
dollars. But as will be detailed below, this was not the end of the story, but
rather only the beginning.

These three public scandals—the ethical abuses reported by Beecher,
the Tuskegee scandal, and controversial experiments on aborted but still-
living ex utero nonviable infants—formed a troika of events that spurred a
governmental response that would lay both the procedural and substantive
groundwork for American public bioethics for years to come.

THE KENNEDY HEARINGS

It began in February of 1973. The U.S. Senate Subcommittee on Health of
the Committee on Labor and Public Welfare, led by Senator Edward
Kennedy, convened a series of hearings in response to practices and
developments in biomedical science and medicine that he believed raised
profound ethical, legal, political, and social challenges. The hearings lasted
eleven days in all, including ten meetings of the subcommittee from
February through July of 1973, and one in July 1974 (one week after the
passage of a significant federal statute—the direct fruit of the previous
year’s hearings).

But these were not the first Congressional hearings on bioethical
issues. Years before, in 1968, Senator Walter Mondale initiated seven days
of hearings aimed at passing a joint resolution creating a federal
“Commission on Health Science and Society” to provide oversight and
guidance on bioethical questions of public import. Mondale was reacting to
reports of the first human heart transplant by Dr. Christiaan Barnard of
South Africa as well as various questions concerning genetic manipulation
that prefigured the current debates over human cloning and gene editing.
But it is also clear that he had in mind the 1966 article of Henry Knowles
Beecher, who provided testimony at the hearing recapitulating his
arguments about the professional and financial pressures motivating
increasingly aggressive forms of human subjects research. But Mondale’s

initiatives foundered until Senator Kennedy commenced his own efforts in
1973.

The Kennedy hearings were formally framed around three legislative
proposals under consideration: Senate Bills 878 and 974, and Joint
Resolution 71. S.B. 878 and S.B. 974, aimed, respectively, to provide
oversight of federally sponsored research involving human subjects and to
provide training in the ethical, legal, social, and policy dimensions of
biomedical research. The third proposal, Senate Joint Resolution 71, was
for the creation of a national bioethics advisory commission in the same
spirit as the 1968 Mondale proposal.

Individual hearings were divided by topic. The first hearings focused
on ethical risks and abuses involving pharmaceutical research using
vulnerable populations, including the controversial “off-label” use of
DepoProvera and DES as experimental contraceptives. A second set of
hearings explored the ethical challenges of research involving the
neurosurgical or pharmacological manipulation of brain and behavior, as
well as research involving genetic screening and engineering. A third set of
hearings focused on research done on vulnerable subjects, including
prisoners, and a discussion of what was termed “outrageous research
abuses.” This included the experimental use of a dangerous midterm
abortion procedure in May of 1972 by Dr. Kermit Gosnell, which led to
serious complications for sixty percent of a group of poor minority women
bused from Chicago to Philadelphia to receive the procedure.27 The fourth
round of hearings focused entirely on the Tuskegee syphilis study scandal.
A fifth hearing, held a year later, was dedicated to examining the
controversial use of living just-aborted ex utero newborns in research.

Despite the wide-ranging subject matter of the first four rounds of
Kennedy hearings in 1973, three recurring elements ran throughout the
discussion: namely, the work of Henry Knowles Beecher, the abuses of
Tuskegee, and to a lesser extent, research involving unborn children during
and after abortion. This last issue resurfaced prominently in the final
Kennedy bioethics hearing dedicated entirely to exploring this controversial
matter.

Beecher was everywhere. His research (especially his 1966 article) was
invoked in nearly every hearing. He testified directly in the third set of
hearings on research abuses of vulnerable human subjects. Symbolically
and substantively, he served as a living prophetic witness warning against
the powerful temptation to use and exploit the vulnerable in biomedical
research to gain prestige, professional advancement, the promise of
funding, as well as the noble pursuit of useful knowledge.

The Tuskegee scandal was a ubiquitous element of the hearings,
anchoring its inception and sustaining its investigative work. In written
testimony submitted for the first hearing, Senator Hubert Humphrey
directly invoked the abuses of Tuskegee and quoted Beecher’s observation
that “[l]ay subjects, sick or well, are not likely to understand the full
implications of complicated procedures, even after careful explanation.”28

In the third round of hearings relating to vulnerable human subjects and
“outrageous” research abuses, numerous witnesses cited Tuskegee as a
constant refrain. Members of the Tuskegee Syphilis Study Ad Hoc
Advisory Committee (created by the Assistant Secretary of Health,
Education, and Welfare) testified about their investigation of the incident.
Fred Gray, a prominent civil rights attorney who had represented Rosa
Parks, testified about his work on behalf of victims of the Tuskegee
experiments, followed by the testimony of two Tuskegee survivors, Lester
Scott and Charles Pollard. A fourth round of hearings lasting four days was
dedicated entirely to investigating the Tuskegee scandal and hearing from
those involved. Throughout all the hearings, the Tuskegee incident served
as a stark and constant reminder that all American institutions—even the
federal government itself—are capable of unspeakable abuse and profound
injustice in the name of biomedical progress.29

Research involving aborted though still-living newborns was also a
feature of the 1973 hearings. In the second round of hearings (held on
February 23 and March 6), nearly sixty pages of written testimony and
supporting materials were submitted describing examples of and raising
grave concerns about such research. Though less prominent during the
Kennedy hearings of 1973, the issue and the public controversy that it
occasioned proved central to the legislative action following those hearings

and prompted a hearing entirely dedicated to live fetal research, held in
1974.

THE BIRTH OF AMERICAN PUBLIC BIOETHICS

While the 1973 Kennedy hearings themselves marked an essential moment
in the inception of public bioethics as a field of law, policy, and politics in
America, the legislative action in which the hearings culminated was even
more momentous. In effect, it constituted the first legal mandate for the
government to identify and implement bioethical principles and regulations
in the name of the state.

The National Research Act was signed into law by Richard Nixon on
July 12, 1974. In part it aimed to facilitate and promote excellence in
biomedical research through federal training and funding programs. But
more significantly, it was the concrete statutory response to the scandals
and concerns that surfaced and were examined during the Kennedy
hearings. Title II of the Act created the National Commission for the
Protection of Human Subjects of Biomedical and Behavioral Research. It
was to be an eleven-member advisory council composed of experts drawn
from a variety of disciplines including medicine, law, ethics, theology,
philosophy, health management, government affairs, and the sciences. It
provided that five members (though no more than five of the eleven) should
be actively involved in research with human subjects.30

The National Commission was empowered by the new law “to identify
the basic ethical principles which should underlie the conduct of biomedical
and behavioral research involving human subjects.” The Commission was
tasked with focusing on the question of the contours and meaning of
“informed consent” in the context of research. In a clear response to the
abuses flagged by Beecher, the Commission was charged to articulate
standards for the ethical conduct of research involving “children, prisoners,
and the institutionalized mentally infirm.”31

As a first order of business, the Commission was tasked with exploring
the question of research involving “living fetuses,” and was directed to
provide a report on this topic no later than four months after its members
assumed office.32 It was also instructed to explore the ethics of

psychosurgery, another topic of the Kennedy hearings. Even more broadly,
the Commission was directed to undertake a special “comprehensive study
of the ethical, legal, and social implications of advance in biomedical and
behavioral research and technology.”33 The Commission was empowered to
hold hearings, take testimony, access information from federal agencies,
and provide recommendations to the President, Congress, and the Secretary
of Health, Education, and Welfare. The National Research Act ordered the
Secretary to publish such recommendations, invite public comment, and
either act on them expeditiously or publish his or her reasons for declining
to do so in the Federal Register, the official daily journal of the U.S.
government. In short, the National Research Act created a commission with
the power to make presumptively actionable recommendations to the U.S.
government on the bioethical issues that scandalized the American public
for nearly a decade.

But the act did still more. It added a provision that the Secretary of
HEW must establish regulations requiring that institutions receiving
funding or support under the new law demonstrate that they have
established an Institutional Review Board to review protocols involving
human subjects and provide for their protection. Furthermore, the Secretary
was charged with promulgating regulations that would govern the conduct
of such research. Finally, the National Research Act imposed a moratorium
on federally funded research “on a living human fetus, before or after the
induced abortion of such fetus, unless such research is done for the purpose
of assuring the survival of such fetus.”34 The ban was to remain in place
until Congress received and considered the report of the National
Commission.

Exactly one week after President Nixon signed the National Research
Act, Senator Kennedy convened the fifth and final hearing, focused solely
on the question of fetal research, including aborted but still-living (though
imminently dying) newborns.35 It was meant to provide a forum for wide
ranging public discussion in advance of the National Commission’s work
on the issue. Kennedy aimed to obtain information about the means, ends,
benefits, and harms of such research, and to explore how it related to the
controversial matter of abortion. Roe v. Wade, decided just eighteen months

prior, roiled the public square and disrupted the legal and policy landscape
by announcing a constitutional right to abortion and a new jurisprudential
framework for its regulation that altered the laws of all fifty states.

Testimony and documentary evidence offered at the hearing described
many of the same experiments reported by the Washington Post a year
earlier. There was also discussion of experiments in which unborn children
slated for abortion were deliberately exposed to rubella in order to study its
mechanism of transmission and effects (for purposes of vaccine
development) after the abortion was completed.

Kennedy called witnesses on both sides of the debate. Nobel Laureate
Dr. Frederick Robbins, Dean of Medicine at Case Western Reserve
University, and Dr. Richard Berman, Chairman of Pediatrics at Columbia
University, offered support for the research, citing its benefits for
biomedical science and clinical practice, and noting that the unborn or
aborted but still-living newborns involved were inexorably dying in any
event. On the other side, Dr. Andre Hellegers, Professor of Obstetrics and
Gynecology and Director of the Kennedy Institute of Ethics at Georgetown
(founded by and named for Senator Kennedy’s family), and Patricia
Policastro, a grassroots pro-life activist and advocate for the cognitively
disabled, argued that it was gravely unjust, abusive, and exploitative to
manipulate and inflict additional injuries on living human subjects slated
for abortion (or just aborted) in research that would provide them with no
benefit. In response to the argument that the research was justified because
such children were going to die in any event, Dr. Hellegers replied, “[I]f
you are not going to make it [meaning, survive] anyway, it is not a warranty
to be experimented upon.”36

For her part, Policastro provided testimony and documentary evidence
recounting controversial examples of live fetal experimentation. For
example, she recalled student protests at Stanford University in response to
a university researcher experimenting on living fetuses. She provided a
statement by one of the student protest organizers that “[Dr. Goodlin’s]
experiments have involved cruel acts, such as slicing open the rib cages of
still living aborted fetuses in order to observe their hearts.”37 Her written

testimony also recapitulated some of the documentary evidence submitted a
year before during the second round of Kennedy hearings.

The hearing concluded and the National Commission commenced its
analysis of research on living fetuses immediately after its members were
chosen and seated. Their work and the report in which it culminated relied
on the evidence presented during the Kennedy hearings. It also animated
and influenced the creation of the strict federal regulations on research
involving living fetuses destined for abortion that are detailed further below.

AN ENDURING BLUEPRINT FOR AMERICAN PUBLIC BIOETHICS

The Kennedy hearings, the National Research Act, and the events to which
they were a response set in place a procedural and substantive foundation
that endures to the present day.

Procedurally, from its inception to today, American public bioethics has
been a reactive form of governance. Scandals occur and the political
branches (or occasionally the judiciary, as in the case of abortion) respond.
The initial reaction nearly always includes an attempt at fact-finding, most
frequently by convening a well-familiar cast of characters—eminent
scientists, famous clinicians, patients’ groups, philosophers, theologians,
activists, government officials, and not infrequently, a representative of the
U.S. Conference of Catholic Bishops. The discourse and debate in these
hearings feature a recurring thrust-and-parry over scientific freedom,
biomedical progress, and efforts to relieve suffering on the one hand, and,
on the other, the competing and constraining goods of respect for the
dignity and autonomy of persons, as well as the practice of humility and the
corollary injunction against “playing God.”

Hearings are often followed by formal state action (such as the
National Research Act) that attempts to address public concerns, even if
only temporarily, like the moratorium on research involving aborted but
still-living newborns. Such legislation often provides a broad-strokes
mandate, and delegates authority to the administrative state—executive
branch agencies such as the Department of Health and Human Services or
federal advisory bodies like the National Commission—to flesh out the
details in a more fine-grained manner, usually in the form of promulgated

regulations which bind with the force of law. The events of 1973 and 1974
are thus emblematic of this enduring procedural blueprint.

The events of 1973 and 1974 show that public bioethics is uniquely
complex and complicated. Not only does it concern the rapidly evolving
and multifarious fields of biomedical science and biotechnology, but the
most difficult ethical, legal, and policy questions feature the possibility of
great goods seamlessly interwoven with potentially catastrophic wrongs.
The researchers described by Beecher, the U.S. Public Health officials in
Tuskegee, and the American doctors traveling to Europe to experiment on
newly aborted still-living infants all intended their work to serve
humanitarian ends for precisely the kinds of subjects they exploited and
abused. In their minds, they were trying to salvage some good from a tragic
circumstance that they did not create—the children of Willowbrook were at
severe risk for hepatitis in any event, the men of Tuskegee were infected
with syphilis and unlikely to get effective care because of their
socioeconomic plight and racial injustice, and the ex vivo neonates were
imminently dying (as intended by the abortion) and beyond the reach of
rescue. The data to be gleaned from these research projects would be
valuable. But the deeper truth is that these researchers intentionally
exploited these intellectually disabled children, poor African American
sharecroppers, and just-aborted but still-living newborns, subjecting them to
risks, manipulation, and painful nontherapeutic interventions that would be
regarded as intolerably unethical if performed without consent on able-
bodied adults of sound mind and sophistication. The researchers embraced
the tragic circumstances as a warrant to conscript these unfortunate victims
into yet another extractive project to serve someone else’s ends, with no
benefits to themselves.

More complicated still are the issues posed by enormously powerful
biotechnologies that can be equally used for good or ill. The Kennedy
hearings featured discussion of novel techniques of neurological or genetic
modification. The technologies themselves were (as all are) neutral and
merely instrumental. They could be used, respectively, both for therapies
for mental illness or heritable disease, or they could be used to exert
unprecedented and unjust psychological control over others, or to pursue

eugenic aspirations. This admixture of good intentions and development of
genuinely beneficial biomedical knowledge combined with the possibility
of great harms and even wickedness is characteristic of many of the issues
of public bioethics, making it a distinctively complicated field of law and
policy.

The events at the birth of American public bioethics likewise illustrate
that the core disputes in this domain are vital conflicts, literally presenting
matters of life and death. Conflicts concern the boundaries of the moral and
legal community, inside of which one is protected by the law and enjoys the
care and concern of others, but outside of which one may be objectified and
even destroyed with impunity for the benefit of others. The children of
Willowbrook, the elderly of the New York Jewish Chronic Disease hospital,
and the people of Tuskegee were singled out for abuse and mistreatment
because their marginal social status rendered them largely defenseless in the
face such injustices. They were effectively invisible until their mistreatment
was exposed by the more powerful. For the just-aborted newborns, the
situation was even more dramatic. Their very moral status as human beings
was (and remains) contested. As will be discussed extensively in Chapter 3,
the question of membership in the human community that anchors the
abortion controversy (which, of course, erupted on the national scene in
1973) infuses the perennial conflicts of American public bioethics. Across
the spectrum of public matters concerning those individuals at the margins
of life’s beginning and end (and the liminal moments in between), the
normative questions of “Who counts?” and “Whose good counts as part of
the common good?” are ubiquitous.

The scandals uncovered by Beecher, of Tuskegee, and involving
research on living just-aborted infants (and the state action taken in
response) likewise manifest the final distinctive feature of American public
bioethics: it is bitterly contested and vexed. This should not be surprising,
given that it is fundamentally concerned with the nature, meaning, and
consequences of birth, life, death, procreation, parenthood, childhood, race,
poverty, illness, scientific freedom, autonomy, dignity, equality, and justice.
Public bioethics squarely and unavoidably poses the questions of “Who are

we and what do we owe to one another?”—matters about which people
differ and feel very strongly, to say the least.

In much of American law and policy there may be a “live and let live”
modus vivendi available, where governmental neutrality can simply make
space for different forms of private ordering, each according to the diverse
normative commitments of various members of the polity. But American
public bioethics presents vital conflicts where either through action or
inaction, the state must take sides. Does the search for useful biomedical
knowledge justify intentionally using and harming disabled children, the
senile elderly, stigmatized minorities, and just-aborted newborns? Does the
very moral and legal status of an individual depend on her circumstances
(such as when she will die imminently because of terminal illness or
someone else’s decision to end her life), her condition of dependence, or
how useful or burdensome she is judged to be by others? Put another way,
American public bioethics unavoidably trades in vital conflicts among
“comprehensive” theories of the good. State neutrality is frequently not a
coherent option.

The events of 1973 and 1974 illustrate the singular substantive nature
of American public bioethics. They make clear that public bioethics
emerges in response to the lived realities and consequences of the
individual and shared lives of embodied beings. Human embodiment entails
vulnerability, the finitude of natural limits, and mutual dependence. These
direct effects of embodiment motivate the pursuit of great goods, but also
create the possibility of profound exploitation and abuse, as we have seen in
the proceeding events. The search for biomedical knowledge and the
practice of medicine aim to ameliorate the afflictions of the body—disease,
injury, and senescence. But those very afflictions create the human
vulnerability that exposes the weak to exploitation by researchers. The
intellectually disabled children at Willowbrook, the elderly patients of the
New York Jewish Chronic Disease Hospital, the men suffering from
syphilis in Tuskegee, and the just-aborted but still-living newborns in
Scandinavia were easily conscripted into involuntary, harmful, and
nontherapeutic research projects precisely because their bodily conditions

and diminished social standing impeded their agency and robbed them of
their voices.

And, finally, the events at the birth of American public bioethics also
usefully point toward the most commonly invoked legal or public policy
solution, rooted in a particular vision of the human being as fundamentally
an individual choosing self. Thus, the solution to the problems of abuse and
exploitation was to seek refuge in legal mechanisms nested in the goods of
autonomy and self-determination, designed primarily to secure the informed
exercise of free will by rational, able-minded persons.

THE DECADES THAT FOLLOWED

In the nearly five decades that followed, three particular vital conflicts,
namely, the legal and policy disputes regarding abortion, assisted
reproduction, and end-of-life decision-making, have been persistent features
of the landscape, and have largely defined American public bioethics. These
vital conflicts are the foci of the inductive anthropological analysis that
comprise the heart of this book. It is thus worth briefly sketching out in a
general way the arc of American public bioethics to illustrate the durability
of these vital conflicts across time, and to prepare the way for the
discussion in later chapters of how embodiment is an essential element to
consider when evaluating the current American legal framework.

1970S

For the remainder of the 1970s, in direct reaction to highly publicized
events, the principal issues of American public bioethics included the law
and policy of human subjects protections, fetal research, gene transfer
research, assisted reproduction, abortion, and end-of-life decision-making.
In 1974, the Department of Health, Education, and Welfare (HEW)
promulgated regulations implementing the National Research Act,
including rules relating to pregnant women, fetuses, prisoners, and the work
of Institutional Review Boards in overseeing research with human subjects.

In 1975, the National Commission issued its first report “Research on
the Fetus,” in which it recommended that HEW could ethically support
research involving fetuses slated for abortion “provided such research is

carried out within the guidelines for all other nontherapeutic research
directed toward the fetus in utero” that is intended to be brought to term.38

They additionally recommended that HEW could support research
involving a just-aborted, nonviable but living newborn, so long as certain
criteria were met, including that the newborn was “less than 20 weeks
gestational age, no significant changes are introduced into the abortion
procedure in the interest of research alone, and no intrusion into the fetus is
made which alters the duration of life.”39 Moreover, the Commission
advised that the research protocol should not affect the decision, timing, and
method of abortion. The Commission stated that such newborns are entitled
to the respect owed to “dying subjects,” whose human dignity warranted
appropriate treatment.40 The Commission also recommended the creation of
a national ethical review body to evaluate cases presenting difficult
questions involving these criteria. Accordingly, HEW propounded
regulations by adopting these recommendations and creating an “Ethics
Advisory Board” (EAB), charged with reviewing and approving proposals
seeking federal funding for research in this domain.

Not surprisingly, in the wake of the Supreme Court’s 1973 Roe v. Wade
decision, the issue of abortion dominated the American public bioethical
landscape throughout that decade (and every decade thereafter). In
response, Congress moved quickly to protect the rights of conscientious
objectors. In 1974, Congress passed the so-called “Church Amendments”
(named for their sponsor, Idaho Democratic Senator Frank Church), which
extended conscience protections to those individuals and entities with
religious or moral objections to performing or assisting performance of
abortions and sterilizations. The Church Amendments also prohibited
institutions that receive certain forms of federal support from discriminating
against health care providers because they performed or refused to perform
abortions on conscientious grounds.41 Also, in 1976, Congress passed an
appropriations restriction colloquially known as the “Hyde Amendment,”
forbidding the use of Medicaid funds to pay for most abortions. The law has
changed slightly over time, but in its essence has been reauthorized every
year since.42 In 1977, in Maher v. Roe, the U.S. Supreme Court upheld as

constitutional a state regulation that restricted Medicaid funding for first-
trimester abortions to those procedures deemed “medically necessary.”43

In 1976, end-of-life decision-making emerged as a signal issue in
American public bioethics with the New Jersey Supreme Court decision In
re Quinlan. The case involved a dispute over the proper care for a
profoundly cognitively disabled woman between her father, who wished to
discontinue life-sustaining measures (namely, her ventilator) and her health
care providers, who refused. Ultimately, the Supreme Court of New Jersey
held that Quinlan’s right to privacy entailed the freedom to choose to
discontinue life-sustaining measures, and that this right could be exercised
by her proxy decision-makers.44 Though the ventilator was removed,
Quinlan surprisingly continued to breathe unaided and died nine year later
in 1985.45

In 1978, Louise Brown—the first baby who had been conceived by in
vitro fertilization—was born. That same year, the HEW Ethics Advisory
Board (EAB) agreed to review a research proposal involving in vitro
fertilization. Federal regulations required EAB evaluation prior to
authorization of federal funding by HEW of any project involving IVF. The
EAB deliberated and concluded in a 1979 report that research involving
human in vitro fertilization is “ethically defensible but still legitimately
controverted.”46 It also recommended that human IVF research is acceptable
from an ethical standpoint, subject to certain criteria. It further
recommended that HEW provide support for such research, though the
EAB refrained from addressing the level of funding. This EAB report
(though never implemented) proved to be a crucial development for the
public bioethics matters touching and concerning both assisted reproduction
and research involving human embryos.

The final key development of the 1970s for public bioethics in America
was the publication in 1979 of the “Belmont Report” by the National
Commission. This report constituted the Commission’s response to the
charge in the National Research Act to articulate the “basic ethical
principles that should underlie the conduct of biomedical and behavioral
research involving human subjects.” The Commission identified three such
ethical principles, namely “respect for persons,” “beneficence,” and

“justice.” Respect for persons entails respect for autonomous decision-
making and protection of those incapable of such choices. “Beneficence” is
a principle that imposes the obligations first, to do no harm, and second, to
seek to maximize benefits while minimizing risks. Finally, “justice” is a
norm concerned with fairly allocating the burdens and benefits of scientific
research involving human subjects.47

Much of the report is dedicated to discussing how these principles
might be applied, with special emphasis on informed consent, risk
assessment, and selection of subjects. The report has had enormous
worldwide impact on the discourse and practice of human subjects research,
despite its failure to define and explore in-depth key concepts, most
importantly the meaning of “persons.” Subsequent application of the
Belmont Report by policymakers and commentators alike has shifted
emphasis from respect for persons generally to one narrow aspect discussed
in the report, namely, the good of personal autonomy. This shift both
reflects and reinforces the vision of human identity and flourishing
(expressive individualism) critiqued in the chapters that follow.

As the decade drew to a close, the National Commission’s term
expired, and Congress created by statute a successor entity in the executive
branch entitled The President’s Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research.

1980S

The 1980s saw the continuation of law and policy disputes over abortion,
fetal research, assisted reproduction, and research involving human
subjects, but also witnessed the emergence of new conflicts regarding the
definition of death, end-of-life decision-making on behalf of disabled
newborns, and related matters of organ transplantation policy.

Reacting to developments in medical techniques enabling clinicians to
artificially sustain respiration and circulation—the traditional indicators of
biological life, the absence of which signaled “death”—the President’s
Commission issued a report in 1981 that sought to offer a new uniform
definition of death, faithful to the physiological realities of the phenomenon
and applicable across a wide variety of ethical, legal, and public policy

contexts. Specifically, in its report, succinctly entitled “Defining Death,” the
President’s Commission proposed the Uniform Determination of Death Act,
which provided that “an individual who has sustained either (1) irreversible
cessation of circulatory and respiratory functions, or (2) irreversible
cessation of all functions of the entire brain, including the brain stem, is
dead.”48 This proposal was approved by the National Conference of
Commissioners on Uniform State Laws, the American Bar Association, and
the American Medical Association. It has since been adopted as the law in
nearly every state in the union, thus transforming the American landscape
of criminal law, tort law, estate law, insurance law, and the law and policy
of organ donation.

Around the same time, in 1982 and 1983, a series of reports emerged
about parents refusing consent for life-saving medical treatments for their
disabled newborns that would otherwise be provided to healthy babies. In
one case from Indiana, parents of a newborn (“Baby Doe”) with Down’s
Syndrome refused consent to correct an esophageal atresia and directed that
food and water be withheld. The hospital objected and filed suit, but the
baby died before the Indiana Supreme Court could hear the case. In another
case from New York, a private citizen unsuccessfully tried to intervene on
behalf of a child with spina bifida whose parents had declined a life-
prolonging intervention. Led by President Reagan and his Surgeon General,
the federal government sought to intervene first by administrative rule,
ostensibly implementing a federal statute prohibiting discrimination on the
basis of disability. The rule directed facilities receiving federal funding to
take steps to prevent the neglect of disabled newborns. In 1986, a fractured
Supreme Court held in Bowen v. American Hospital Association that the
federal regulation was invalid because it exceeded the authority of the
underlying disabilities statute it was meant to implement.49 While this case
was being litigated, Congress embedded federal protections for disabled
newborns by amendment of the Child Abuse Prevention and Treatment Act,
which was passed in October of 1984.50

Closely connected to the question of death and dying, the issue of
organ donation and transplantation likewise emerged in the 1980s as a core
issue in American public bioethics. In response to a shortage in donor

organs, a demand for transplantations, and lack of clarity regarding the law
concerning property in human remains, Congress adopted the National
Organ Transplant Act (NOTA) in 1984.51 The law was designed to create a
national procurement framework that would promote donation of organs.
But it also clearly forbade the buying and selling of organs for
transplantation out of ethical concerns regarding commodification of the
body and exploitation of the poor.

Just as in the 1970s, the issues of human subjects protections, fetal
research, and abortion remained active concerns for lawmakers, judges, and
the public at large. The Department of Health and Human Services in 1981
revised federal regulations regarding Institutional Review Boards to
conform to recommendations by the National Commission, and the FDA
followed suite, within the boundaries of their statutory authority. In 1982,
the President’s Science Adviser in the Office of Science and Technology
Policy created a committee tasked with developing a common federal
policy for protection of human subjects. This proposed policy was
published in 1986 and adopted in 1991 by multiple federal agencies as the
“Common Rule.”52

The public struggle over the ethics, law, and policy regarding fetal
research continued. In 1985, Congress passed the Health Research
Extension Act, which reauthorized the National Institutes of Health (the
primary research funding arm of the federal government), prohibiting
federal support for research on nonviable newborns or newborns of
uncertain viability unless the intervention was meant to “enhance the well-
being or meet health needs of the fetus or enhance the probability of its
survival to viability; or will pose no added risk of suffering injury, or death
to the fetus.” Moreover, the law provided that in federal human subjects
regulations the risk standard must “be the same for fetuses which are
intended to be aborted and fetuses which are intended to be carried to
term.” The act also created the “Biomedical Ethics Advisory Committee,”
which was to study the “nature, advisability, and biomedical and ethical
implications” of exercising any waiver of the human subjects protections
applicable to live fetal research.53 The BEAC met only twice and its work

was stymied over abortion politics. Its appropriations were halted and its
term expired in 1990 without making any recommendations.

In 1988, the public question shifted its focus from research on living
fetuses and newborns to research involving cadaveric fetal tissue. Assistant
Secretary for Health and Human Services Robert Windom announced a
moratorium on transplantation research with fetal tissue taken from
abortions until an advisory committee could examine the question and
report back. In December 1988, the NIH Human Fetal Tissue
Transplantation panel issued a report responding to the questions posed by
Windom and recommending that such research receive federal support
subject to certain conditions.

For example, the decision to terminate the pregnancy and consent to
the abortion must be prior to and separate from the decision to donate fetal
tissue for research; the pregnant woman may not designate the transplant-
recipient of the tissue; the pregnant woman should not be induced to
terminate pregnancy for the sake of providing tissue; prior informed
consent of the pregnant woman should be obtained before using the tissue
in research; and the timing and method of abortion should not be influenced
by the potential uses of fetal tissue.

No action was taken on the NIH report until November 1989, when the
Secretary of HHS advised the Director of NIH that he intended to continue
indefinitely the moratorium for federal funding on research involving
transplantation of human fetal tissue derived from induced abortions.

Abortion likewise loomed large in the 1980s, with several important
decisions of the Supreme Court. Two decisions bookending the decade bear
particular mention. First, in Harris v. McRae, the U.S. Supreme Court
affirmed the constitutionality of the Hyde Amendment.54 Second, in 1989,
in a fractured opinion in Webster v. Reproductive Health Services, the Court
affirmed the constitutionality of a Missouri law that, among other things,
banned the use of public employees and facilities for performance or
assistance of elective abortions.55 A plurality of Justices pointedly refused
to overturn Roe v. Wade, to the chagrin of some Justices and to the relief of
others. Thus, Webster signaled that the jurisprudence of abortion was

unstable and remained a source of contention among the justices along
multiple lines of concern.

Finally, assisted reproduction emerged once again as a key locus of
public bioethical controversy at the end of the 1980s, with the high-profile
case of In re Baby M. This case featured a dispute between a surrogate,
Mary Beth Whitehead, and prospective parents including William Stern
(whose sperm was used to impregnate Whitehead) and his wife Elizabeth.
Following the birth of the baby, Whitehead changed her mind and sought
custody of the child. The Sterns, in turn, sued to enforce the surrogacy
contract. The New Jersey Supreme Court held in 1988 that the contract was
invalid on the grounds that such agreements violated public policy. On
remand, the New Jersey Family Court concluded that the “best interests of
the child” would be served by awarding custody to Mr. Stern, with rights of
visitation granted to Whitehead.56

1990S

Into the 1990s American public bioethics was dominated by the issues of
abortion, fetal tissue research, embryo research, assisted reproduction, end-
of-life decision-making, and assisted suicide. The events of this decade will
be unpacked in further detail in the chapters that follow.

The first (and only) federal statute governing the practice of assisted
reproduction—the Fertility Clinic Success Rate and Certification Act—was
passed in 1992. It provided a mostly voluntary consumer protection
framework, requiring clinics to report certain information relevant to
patients (for example, success rates), published annually by the Centers for
Disease Control. It also offered a model laboratory certification program,
which appears never to have been adopted in the United States by
researchers or practitioners of IVF.57 That same year, in the influential case
of Davis v. Davis, the Supreme Court of Tennessee decided that while
frozen IVF embryos are, legally speaking, neither “persons” nor “property,”
in a custody dispute between a former married couple, the husband’s desire
to destroy the embryos in order to avoid procreation should prevail over the
wife’s desire to donate them to another infertile couple.58

The most important Supreme Court precedent in the jurisprudence of
abortion was decided in 1992, in the case of Planned Parenthood v. Casey.
A three-judge plurality affirmed the “core-holding” of Roe v. Wade but
adopted a new and ostensibly more permissive framework for evaluating
state and federal restrictions on abortion. Under the new rule, states could
regulate abortion prior to viability so long as they did not impose an “undue
burden” on a woman’s ultimate right to terminate her pregnancy. After
viability, the state could restrict abortion, so long as such laws had a rational
basis and included exceptions for cases in which a woman’s life or health
were endangered by the continued pregnancy.59 The Court did not specify
what constituted an “undue burden,” but affirmed all but one of the
challenged restrictions of the Pennsylvania Abortion Control Act, including
a 24-hour waiting period, an informed consent provision, and a parental
consent requirement. The framework set forth in Casey endures to the
present day and governs all efforts to regulate abortion at both state and
federal levels.

Congress and the newly elected President Clinton had an immediate
and outsized impact on the long simmering debate over the government’s
role in fetal tissue research.

President Clinton lifted the administrative moratorium on research
involving fetal tissue procured from induced abortions. More importantly,
Congress passed (and Clinton signed) the NIH Revitalization Act of 1993,
which included a number of important provisions. First, it set in place a
framework for the federal support of fetal tissue research, imposing
restrictions that meant to insulate the decision for and manner of providing
an abortion from the choice to donate fetal tissue for research. The new law
included informed consent provisions requiring the pregnant woman to
warrant that she is not permitted to designate (or even know the identity of)
any recipient of transplantations of the procured tissue. Moreover, the
attending physician must sign a statement averring that the woman’s
consent to the abortion was obtained prior to seeking consent for tissue
donation, and that “no alteration of the timing, method, or procedures used
to terminate the pregnancy was made solely for the purposes of obtaining

the tissue.” The act also prohibited any person from buying or selling fetal
tissue for valuable consideration.60

The NIH Revitalization Act likewise had an important impact on the
federal funding of embryo research—an issue that would become the most
hotly-contested question in American public bioethics for two decades. The
act revoked the HHS regulation requiring Ethics Advisory Board approval
for NIH research funding proposals involving IVF embryos. President
Clinton directed NIH Director Harold Varmus to convene an NIH Human
Embryo Research Panel to offer recommendations for federal funding
criteria and procedures. The Panel submitted its recommendations in
September 1994, most of which were accepted by the President. Before
President Clinton’s NIH could authorize funding, however, party control of
Congress changed hands from Democrat to Republican, and the new
majority adopted in 1996 an appropriations rider known as the “Dickey-
Wicker Amendment” (named for its sponsors), forbidding federal funding
for research “in which” embryos are created, destroyed, or subjected to
more than the minimal risks allowed by federal human subjects regulations
for fetuses in utero.61 This new law seemed to foreclose the possibility of
federal funding for research involving IVF embryos.

The next year, the birth of “Dolly the Sheep,” who had been conceived
by cloning (somatic cell nuclear transfer), electrified the scientific
community and captured the imagination of the public worldwide. In
reaction to this event, there was a cascade of proposed legislative activity at
the state, federal, and international levels seeking to ban different
applications of human cloning. While these efforts met some success at the
state and intergovernmental levels, the U.S. Congress was never able to
settle on legislation banning or regulating human cloning.

In 1998, the first published reports of isolating human embryonic stem
cells by researcher James Thomson of the University of Wisconsin
reinvigorated the desire of the scientific community and its allies in
government to find some way to support this work through federal
funding.62 This at first seemed a difficult task, as the Dickey Amendment
forbade funding for research involving the destruction of living human
embryos—a necessary step in procuring embryonic stem cells. In response

to this challenge, President Clinton charged the General Counsel of HHS,
Harriet Rabb, to analyze the precise language of the Amendment in order to
discern whether and how federal funding for embryonic stem cell research
might nevertheless be possible under the relevant law. In 1999, Rabb
submitted a memorandum arguing that because the Dickey Amendment
only prohibited funding for research “in which” embryos are destroyed, the
federal government could nonetheless lawfully provide funding for research
on cultured embryonic stem cell lines, so long as it did not subsidize the
prior embryo-destroying act from which such lines were derived. Satisfied
by her legal analysis, President Clinton began to make arrangements to
provide funding to this new domain of research. However, the 2000 election
of President Bush would frustrate his designs.

The beginning of human life was not the only locus of dispute in
American public bioethics in this decade; there were also momentous
developments concerning the law and policy of death. In 1990, in a case
called Cruzan v. Director, Missouri Department of Health, a bare majority
of the U.S. Supreme Court appeared to recognize a right to decline life-
sustaining measures, but affirmed as constitutional a state law requiring
proof by the exacting standard of clear and convincing evidence of an
incompetent patient’s desire to discontinue life support (in this case,
artificial nutrition and hydration).63

Four years later, the state of Oregon adopted by referendum the
nation’s first law legalizing physician-assisted suicide. The measure was
approved by a 51.3 percent to 48.7 percent vote.64 Implementation of the
law was delayed due to a court injunction, but ultimately went into effect in
1997.

Finally, in 1997, in companion cases Washington v. Glucksberg and
Vacco v. Quill, the Supreme Court unanimously decided that there is no
right to physician-assisted suicide in the U.S. Constitution. Accordingly, the
Court held that state laws banning physician-assisted suicide do not violate
the Constitution’s due process or equal protection clauses.65

2000S

As the calendar turned to the first decade of the new millennium, American
public bioethics was primarily consumed by debates over embryonic stem
cell research. The issues of abortion and end-of-life decision-making were
also prominent matters of public debate and governance. These
developments figure prominently in the discussion in subsequent chapters.

From his inauguration in January 2001, the question of whether and
how to provide federal funding for embryonic stem cell research was
perhaps the most watched and hotly debated policy matter confronting
President Bush’s new administration. On August 9, 2001, President Bush
announced his policy in the first televised address by a U.S. President
entirely devoted to public bioethics.66 President Bush announced a policy
meant to advance the science of stem cell research without facilitating or
creating incentives for the future use and destruction of human embryos.
Concretely, by Executive Order, he would offer funding for research on
stem cells derived from nonembryonic sources (for example, “adult” stem
cells), as well as for research on existing embryonic stem cell lines derived
before the announcement of the new policy. There would be no funding for
any research on embryonic stem cell lines derived after the policy, as this
might create incentives to destroy embryos (a necessary step in creating
such stem cell lines). President Bush would later veto two Congressional
attempts to liberalize the policy.

Meanwhile, states around the country adopted their own laws
concerning embryonic stem cell research and the related matter of human
cloning. Some states moved to ban these practices, whereas others moved to
fund them. Most notably, in 2004, the state of California voted by
referendum to approve Proposition 71, allocating $3 billion for stem cell
research and amending the state Constitution to make cloning for
biomedical research an enumerated right.67

Also in 2004, Congressman Dave Weldon of Florida successfully
attached an appropriations rider that forbade the issuing of any patent “on
claims directed to or encompassing a human organism,” including human
embryos, though it was silent and thus permissive of the issuance of patents
on embryonic stem cell lines.68 This provision was consistent with a
proposal under discussion by President Bush’s Council on Bioethics, later

published in its 2004 report, Reproduction and Responsibility: The
Regulation of New Biotechnologies. This appropriations provision was later
permanently codified in 2011 as part of the America Invents Act.

In 2005, the United States joined a majority of member states at the
United Nations in voting for the Declaration on Human Cloning, a
nonbinding measure calling for the banning of all forms of human cloning.
That same year at UNESCO, member states adopted unanimously the
Universal Declaration on Bioethics and Human Rights.

In 2007, two papers published in the journals Science and Cell
described a revolutionary development for “reprogramming” somatic cells
to a pluripotent state, perhaps rendering them the functional equivalent of
embryonic stem cells. The new cells, dubbed “induced pluripotent stem
cells” (iPSCs), could be created without the controversial step of using and
destroying human embryos.69 One of the researchers involved, Shinya
Yamanaka, would receive the 2012 Nobel Prize in recognition of this work.
President Bush, responding in part to a white paper of his Council on
Bioethics (“Alternative Sources of Human Pluripotent Cells”) issued an
Executive Order in 2007 meant to provide enhanced support for this new
and promising avenue of research.

In March 2009, President Obama revoked all of his predecessor’s
executive orders regarding embryonic stem cell funding, and announced
that he would adopt a policy offering funding to “responsible, scientifically
worthy stem cell research, including embryonic stem cell research, to the
extent permitted by law.”70 The NIH published guidelines in July 2009
implementing this order.

The first decade of the twenty-first century also saw a great deal of
activity in the domain of abortion law and policy. In 2000, the Supreme
Court struck down as unconstitutional dozens of state laws banning intact
dilation and extraction abortions, a controversial procedure known as
“partial birth abortion.”71 In 2003, the U.S. Congress passed and President
Bush signed a more refined federal version of these laws known as the
Partial Birth Abortion Ban Act. During the late 1990s, Congress had passed
similar bills twice, but President Clinton had vetoed them. The 2003 law
was immediately enjoined as it made its way to the Supreme Court, which

affirmed the law as constitutional in Gonzales v. Carhart, announced in
2007.72

In response to reports of newborns surviving abortions and being left to
die without medical aid, Congress passed the Born-Alive Infants Protection
Act of 2002. The act clarified that in federal law and policy the words
“person,” “human being,” “child,” and “individual” include “every infant
member of the species homo sapiens who is born alive at any stage of
development.”73 In this way, the law meant to extend the protections of
federal law (including provisions mandating emergency medical care) even
to infants born alive following an abortion. However, the law did not
provide for any specific mechanisms or enforcement nor penalties for its
violation.

In 2004, responding to the highly publicized case of the murder of Laci
Peterson and her unborn child Conner, Congress enacted the Unborn
Victims of Violence Act (also called Laci and Conner’s Law). The bill
made it a separate crime to cause the death of or bodily injury to an unborn
child at any stage of development in the commission of certain specified
violent federal crimes.74

In 2005, the Hyde-Weldon amendment was added to the HHS
appropriations bill, which provided that no federal funding would be
authorized “for any federal agency or program, or to a state or local
government” if they subject any individual or entity to discrimination on the
grounds that they do not “provide, pay for, provide coverage of, or refer for
abortions.”75 This rider has been attached to every subsequent HHS
appropriations bill to the present day.

In 2006, following a recommendation by the President’s Council on
Bioethics in its 2004 report Reproduction and Responsibility: The
Regulation of New Biotechnologies, Congress passed the Fetus Farming
Prohibition Act, which banned the knowing solicitation or receipt of human
fetal tissue donated following a pregnancy deliberately initiated to provide
research materials, or derived from a human embryo or fetus gestated in the
uterus of a nonhuman animal.76

Once again, in addition to the issues of embryo research and abortion,
end-of-life decision-making resurfaced as a matter of public contention. In

2005, literally every branch of the U.S. and Florida governments were
embroiled in a controversy about the treatment of Theresa Marie Schiavo, a
profoundly cognitively disabled woman. Schiavo’s parents and husband had
been locked in a bitter disagreement over continuing provision of artificial
nutrition and hydration. After the Florida courts ordered life-sustaining
measures to be terminated, the Florida legislature passed a law allowing the
Governor to stay the judicial order to provide time to appoint a guardian for
Schiavo and to investigate the matter. The Florida Courts ultimately
declared this law unconstitutional, after which the U.S. Congress passed
Terri’s Law, granting federal jurisdiction to hear civil rights claims on her
behalf. Ultimately, the federal courts declined to hear any claims and
Schiavo died from dehydration.

In 2008, the state of Washington became the second state to legalize
physician-assisted suicide by referendum. In 2009, the Montana Supreme
Court declared that physician-assisted suicide was not prohibited under
current state law.

2011 TO PRESENT

From 2011 to the present, the dominant public bioethics questions in
America have likewise centered on end-of-life matters, abortion, and
research involving gene modification, including “gene editing” of human
embryos, all of which are highly relevant to the analysis of the “vital
conflicts” of public bioethics in Chapters 3, 4, and 5.

In 2012 Jennifer Doudna and coauthors published “A Programmable
Dual-RNA-Guided Endonuclease in Adaptive Bacterial Immunity” in
Science, describing a technique for “site-specific DNA cleavage” and
“RNA-programmable genome editing.”77 The following year, Feng Zhang
and coauthors published “Genome Engineering Using the CRISPR-Cas9
System” in Nature discussing the use of similar techniques “to facilitate
efficient genome engineering.”78 These papers (and the related patent
disputes among the competing research teams) created a sensation around
the world, raising the possibility of revolutionary targeted medical
treatments and perhaps even ecological interventions at the genomic level.
Intense debate focused on the possibility of modification that would effect

heritable changes—altering the so-called “germ line,” and thus
transforming the genetic constitution of future generations. Alongside the
optimism and curiosity arose deep worries about potential biosafety threats
arising from unintentional or perhaps even intentional applications of these
powerful techniques. In 2015, the journal Protein & Cell published a paper
describing how researchers in China had used CRISPR-Cas9 to edit the
genomes of living human embryos (which were later discarded).79 In
response to these developments, the National Academies of Science
convened an International Summit on Gene Editing in 2015. That same
year, Congressman Robert Aderholt attached an amendment to an
appropriations bill preventing the Food and Drug Administration from
considering or approving any research proposal “in which a human embryo
is intentionally created or modified to include a heritable genetic
modification.”80

Relatedly, the ethical, legal, and policy questions regarding the
creation, modification, and destruction of human embryos were sharpened
further in 2017, when George Church and coauthors published “Addressing
the Ethical Issues Raised by Synthetic Human Entities with Embryo-Life
Features.”81 This same year, researcher Shoukhrat Mitalipov successfully
edited the genomes of human embryos (later discarded) at the Oregon
Health Sciences University.82

In 2019, the first children subject to germline gene editing were born.
Lulu and Nana, twin girls from China, had their embryonic genomes edited
by American-trained scientist, He Jiankui, to modify gene CCR5,
associated with HIV-resistance.83 The announcement was met with
widespread criticism and condemnation.

The second decade of the millennium also featured a flurry of activity
surrounding the question of death and dying. In 2012, the citizens of
Massachusetts defeated a ballot measure to legalize physician-assisted
suicide. A year later, the Vermont Legislature legalized the practice in that
state. This was followed by legalization of physician-assisted suicide in
California and Colorado in 2016, and the District of Columbia in 2017,
Hawaii in 2018, and New Jersey and Maine in 2019.

In 2013, there was a widely publicized dispute between the family of a
disabled thirteen year old named Jahi McMath and the hospital caring for
her about whether she was properly diagnosed as “brain dead” (and thus
legally deceased under relevant law). A judge concluded that she was, but
the hospital released her and the family transferred her to another location
for care. She died at home in 2018.84 Relatedly, in 2015 there was a dispute
between a cancer patient, Chris Dunn, and a Texas hospital over whether
further life-sustaining treatment for him should be withdrawn on the
grounds of futility. The conflict centered on the application of a state law in
Texas which authorizes physicians to discontinue care over the objections
of the patient and his representatives. Dunn pled for continued life-
sustaining measures in response to efforts by his treating physicians who
sought to terminate such care. Though the hospital prevailed in court, it
continued to provide care for him voluntarily until his natural death shortly
thereafter.85

Finally, the second decade of the twenty-first century saw further
developments in the law and jurisprudence of abortion. States passed a
series of laws during this period to regulate and restrict abortion, nearly all
of which were challenged in court immediately upon passage. HB2, passed
by the Texas legislature in 2013, provides an illustrative example. Its fetal
pain law sought to ban abortions after twenty weeks. In response to the
prosecution of Dr. Kermit Gosnell for infanticide, manslaughter, and other
shocking abuses in his unsanitary and illegal abortion practice in
Philadelphia, HB2 sought to impose more stringent regulations on abortion
clinics. Specifically, the law required abortion providers to have hospital
admitting privileges within a certain geographic radius of their practice, and
required abortion clinics to meet extensive standards applicable to
ambulatory surgical centers. Both of these provisions were struck down by
the U.S. Supreme Court as unconstitutional in a 5–3 decision announced in
2016 (Whole Woman’s Health v. Hellerstedt).86

A VISION

Since its inception, the field of public bioethics has captured the attention of
the political and judicial branches of government, and the imaginations of

citizens across the nation. It is an area of law and policy uniquely oriented
to the challenges of human embodiment and public matters involving the
protection of persons who are vulnerable, dependent, or confronted with the
finitude of natural limits. It is a domain of complex, bitterly contested
public questions of great moment concerning the unborn, children, the
disabled, the elderly, the infertile, stigmatized minorities, and the dying.

Despite the manifold human dimensions and complexity of these
disputes, a closer investigation reveals that the legal, political, and
theoretical resources deployed to resolve them are relatively limited and
simplistic, focusing mostly on legal mechanisms and analytic categories
restricted to the ethical framework of autonomy and self-determination.
While these goods and principles are important, and well suited to resolving
conflicts among free and independent individuals operating at the height of
their cognitive powers, they are not adequate for the lived reality of
dependence, vulnerability, and diminished freedom that characterizes the
human context of public bioethics.

At its foundation, American public bioethics has a reductive and
incomplete vision of human flourishing and identity, and because of this it
is unable to respond fully and coherently to the challenges intrinsic to the
individual and shared lives of embodied beings, namely, the experience of
vulnerability, dependence, and natural limits. American public bioethics
falls short as a form of law and policy because it is rooted in a mistaken
anthropology. In other words, American public bioethics is operating from a
flawed anthropological point of departure, which leads in turn to
inadequate legal tools of analysis.

Improving American public bioethics thus requires a revision of its
anthropological foundations. Through an “anthropological” analysis in the
next chapter I will provide a brief discussion of the errors of this field,
along with the beginnings of an augmented account of human identity and
flourishing that provides a better and truer foundation for law and policy in
this domain.

It is to these questions that the next chapter turns.

2

An Anthropological Solution
Everyone has an anthropology. There is no not having one. If a man says he does not,
all he is saying is that his anthropology is implicit, a set of assumptions he has not
thought to call into question.

—WALKER PERCY, “REDISCOVERING A CANTICLE FOR LEIBOWITZ” IN Signposts in a Strange Land

What do law, policy, and politics have to do with “anthropology,” defined in
its original sense as an account of what it means to be human? At the very
deepest level, law and public policy exist for the protection and flourishing
of persons. Thus, all law and public policy are necessarily built upon
presuppositions about what it means to be and thrive as persons.
Accordingly, the pathway to the deepest understanding of the law requires a
searching anthropological inquiry. The wisdom, justice, and intelligibility of
the law’s means and ends are fully graspable only once its underlying vision
of human identity and flourishing is uncovered and assessed.

This is no small task. The question of human identity has bedeviled
humankind since the emergence of the capacity for self-reflection. As
ethicist James Gustafson observed, this question is “probably as old as
critical human self-consciousness.”1 In his 1944 “An Essay on Man,”
German philosopher Ernst Cassirer noted that in the history of philosophy,
the matter of human self-knowledge has been “the Archimedean point, the
fixed and immovable center of all thought.”2 Augustine lamented “I have
become a puzzle to myself and this is my infirmity.”3 And the Psalmist
famously asked the creator of the universe, “What is man that you should
be mindful of him?”4

Even the very definition of “person” is itself perennially vexed. The
word is etymologically connected to the Latin word “persona,” which
referred to the mask worn by ancient Etruscan and Roman stage actors,
through which their voices (and thus their roles) were expressed. As
philosopher Kenneth Schmitz has observed, this connection to speech led
Latin teachers of grammar to adopt the term “person” for the singular and
plural forms of verb conjugation.5 It is also connected to the Greek word
“prosopon,” variously translated as face, mask, stage character, and
eventually person. From Boethius’s famous definition of “person” offered
in the sixth century (“an individual substance of a rational nature”), to
Locke’s (“a thinking intelligent being that has reason and reflection and can
consider itself as itself”), to Joseph Fletcher’s more recent multiple
“indicators of humanhood,” and Mary Anne Warren’s “five traits which are
most central to the concept of personhood,” the substance and even
intelligibility of “person” (and who counts as a person) as a descriptive and
normative matter have been vigorously contested.6 Indeed, German
phenomenologist Max Scheler lamented that the advance of knowledge
across the disciplines has resulted in more rather than less perplexity on this
matter: “We have a scientific, philosophical, and theological anthropology
which know nothing of each other.… The ever growing multiplicity of
sciences studying man has much more confused and obscured than
elucidated our concept of man.”7

And yet, any legal and policy apparatus that aims at the protection of
persons and the promotion of their flourishing necessarily depends upon a
prior, if unstated, vision of who and what persons are. This is, a fortiori,
true of American public bioethics, which regularly engages the “boundary”
question of who counts as a person—as a member of the legal and moral
community whose rights and interests must be respected, whose good must
be considered as an element of the common good. When it enters the law,
the grounding vision of human identity and flourishing can mean the
difference between life and death (or even how these concepts are defined).

Relatedly, as will be discussed further below, sociologist John Evans
has shown empirically that one’s anthropological premises strongly
correlate with one’s view of the scope and substance of human rights.8

Different anthropologies expand or contract the circle of human concern
and protection.

The primary substantive claim of this book emerges from an inductive
legal analysis (that is, taking the law as it currently exists) meant to uncover
the “anthropology”—the premises about human identity and flourishing—
of American public bioethics. That is, when interrogated from an
anthropological perspective, the law and policy in this area are in certain
core matters deeply flawed, especially as evidenced by its response to those
who are vulnerable, dependent, or particularly constrained by natural limits.

These defects in law and policy follow directly from the adoption of a
reduced and incomplete vision of persons that fails to take seriously the
meaning and consequences of human embodiment. To remedy this problem,
the law must expand and augment its grounding conception of human
identity and flourishing and integrate goods, practices, and principles that
are appropriate to the fully lived reality of embodied human beings.

Before turning to the specific case studies that bear out this proposition
(and point a possible way forward), it is necessary to identify and offer a
preliminary discussion and critique of the anthropological conception—the
vision of human identity and flourishing—that will emerge in the inductive
analysis in the chapters that follow as the key anchor and driver of the law
and policy of some of the core vital conflicts in American public bioethics.
Put most succinctly, the dominant anthropology of American public
bioethics in these conflicts most closely resembles what social scientist
Robert Bellah first termed “expressive individualism.”9

EXPRESSIVE INDIVIDUALISM

From 1979 to 1984, sociologist Robert Bellah and colleagues conducted
interviews with 200 individuals, in efforts to identify and understand how
Americans understood themselves as persons and how they derived
meaning for their lives. In the 1985 classic Habits of the Heart, Bellah
detailed his team’s findings and identified a vison of human identity and
flourishing that he dubbed “expressive individualism.” Across a variety of
contexts, both public and private, people interviewed by Bellah affirmed the
view that the individual person considered in isolation is the fundamental

and defining normative reality. Bellah found that human flourishing
consists in the expression of one’s innermost identity through freely
choosing and configuring life in accordance with his or her own distinctive
core intuitions, feelings, and preferences.

This unique anthropology combining individualism and this sense of
“expressivism” has been further explored, deepened, and critiqued in
various ways by contemporary philosophers such as Charles Taylor,
Alasdair MacIntyre, Michael Sandel, and others. As will be shown in the
chapters that follow, this is the anthropology that underwrites some of the
core vital conflicts of American public bioethics. The work of these
thinkers is thus highly valuable for the task of illuminating and critiquing
this domain of law and policy.

But first, it is necessary to more specifically and succinctly summarize
the vision of human identity and human flourishing that will emerge from
the following chapters’ inductive analyses of concrete domains of law and
policy.

The anthropology of American public bioethics begins with the
premise that the fundamental unit of human reality is the individual person,
considered as separate and distinct from the manner in which he is or is not
embedded in a web of social relations. Persons are identified with and
defined by the exercise of their will—their capacity for choosing in
accordance with their wants and desires. Thus, this conception of
personhood decisively privileges cognition as the indispensable criterion for
membership in this category of beings. In this way, it appears to be
dualistic, distinguishing the mind from the body. The mind and will define
the person, whereas the body is treated as a contingent instrument for
pursuing the projects that emerge from cognition and choice. Moreover,
under this anthropological approach, capacity for cognition is not only the
hallmark of individual personhood, it defines the very boundaries of the
world of persons versus nonpersons. (This, of course, becomes of crucial
importance when operationalized in the vital legal and policy conflicts of
American public bioethics.) Thus, given its singular focus on the thinking
and choosing atomized self, the anthropology of American public bioethics
represents a strong form of individualism.

The anthropology of American public bioethics is likewise strongly
expressivist in its conception of human flourishing. As used here,
“expressivism” holds that individuals thrive insofar as they are able to
freely create and pursue the unique projects and future-directed plans that
reflect their deeply held values and self-understanding. These projects and
purposes emerge from within the self; neither nature, “natural givens,” nor
even the species-specific endowments and limits of the human body, dictate
the ends of individual flourishing. Put another way, the anthropology of
American public bioethics is strongly anti-teleological. It does not
recognize natural “ends” that guide understanding of the flourishing of the
individual human.

Within the anthropological framework of American public bioethics, it
seems that human relationships and social arrangements are likewise judged
in light of how well or poorly they serve the self-defining projects of the
individual will. Under this account, individuals encounter one another as
atomized wills. These individuals come together in collaboration to pursue
mutually beneficial ends and separate when such goals are reached or
abandoned. Or perhaps they encounter one another as adversaries, who
must struggle to overbear one another in order to achieve their self-defined
and self-defining objectives.

Accordingly, the anthropology of expressive individualism elevates the
principles of autonomy and self-determination above other competing
values in the hierarchy of ethical goods, such as beneficence, justice,
dignity, and equality. When operationalized in law and policy, the focus
turns to eliminating obstacles, perhaps even including natural limits, that
impede the pursuit of the self-defining projects of the will. As will be seen,
given its history, tradition, and culture, in American public bioethics, the
primary mechanism toward this end is the assertion of “negative” rights.

The concepts of “individualism” and “expressivism” have received a
great deal of attention—both positive and negative—from philosophers,
theologians, writers, and artists from antiquity to the present day. There is a
rich and extensive literature exploring, critiquing, and disputing these
notions. There are, to be sure, many “individualisms,” variously attacked
and defended by theorists across the history of ideas. Philosopher Roderick

Long has offered a fascinating and lengthy taxonomy of individualisms and
individualists stretching from Plato’s rendering of Callicles (in Gorgias),
Glaucon, Adeimantus, and Thrasymachus (in Republic), through the works
of Hobbes, Adam Smith, Locke, up to twentieth-century figures including
economic theorists such as Frederich Hayek.10 Philosopher Tibor Machan
has offered his own detailed historical and analytic account, alongside a
defense of his preferred form of individualism.11 One theater of intellectual
reflection and contestation regarding individualism has been the “libertarian
versus communitarian” debates of the latter part of the twentieth century,
featuring such eminences as Nozick, Taylor, Sandel, Bellah, and MacIntyre.
Still another anthropological counterproposal set forth in opposition to
individualism has been “personalism,” championed in a variety of forms by
such diverse thinkers as Emmanuel Mounier, Gabriel Marcel, Max Scheler,
Paul Ricoeur, Martin Buber, Robert Spaemann, and Pope John Paul II.

It is far beyond the scope of this book to wade into this rich, dense, and
fascinating thicket of debates. It will thus eschew the embrace of any of the
panoply of isms that populate the landscape of these disputes, and it will
certainly not seek to adjudicate the perennial arguments among these
learned discussants. Instead, the analytic posture of this book is inductive.
The goal is to understand and critique the regnant anthropology of
American public bioethics by analyzing the law and policy (and the
academic discourse that undergirds them) as they currently stand.

That said, the forms of individualism and expressivism described and
analyzed by certain participants in the above debates—including especially
Sandel, Taylor, and MacIntyre—are valuable for this inductive project. In
different ways, they describe a vision of human identity and flourishing that
strongly resembles the active, operative anthropology for American public
bioethics that will emerge as foundational in the chapters that follow. As
stated, this book takes no position on whether these thinkers (often referred
to—mostly by others—as “communitarians”) have accurately characterized
and successfully critiqued their opposite numbers in these theoretical
debates (often referred to by others as “individualists,” “libertarians,”
“liberals,” and the like). The particular accounts of individualism and
expressivism offered by Sandel, Taylor, MacIntyre, and others are what

come to the surface when one interrogates some of the key vital conflicts of
American public bioethics, even though these thinkers have not deployed
these concepts in their own reflections on matters of public bioethics; with
the exception of Sandel, most of these thinkers have not addressed this
domain at length. Accordingly, it is worthwhile to briefly discuss these
accounts (and critiques) of individualism and expressivism before pressing
ahead further.

INDIVIDUALISM

The term “individualism” is most often attributed to Alexis de Tocqueville
in the nineteenth century (though Israeli historian Yehoshua Arieli notes
that the word was used a few years before in both an American political
magazine and in Michel Chevalier’s Lettres sur l’Amerique du Nord).12 In
his travels in America, Tocqueville observed with distress the emergence of
a new self-understanding that drew people away from their communal ties
and sense of shared obligations into an isolated focus on a tight circle of
family, friends, and their own limited interests. Individualism did not
merely weaken the ties to the community and the sense of corporate
responsibility for others, it also led people into the view that they “owe no
man anything and hardly expect anything from anybody. They form the
habit of thinking of themselves in isolation and imagine that their whole
destiny is in their hands.”13 Tocqueville worried that this illusion of self-
sufficiency and the abstraction of the individual would even lead people to
“forget their ancestors” as well as their descendants. In the embrace of
individualism, “each man is forever thrown back upon himself alone, and
there is danger that he may be shut up in the solitude of his own heart.”14

Robert Bellah drew upon these same concerns in his analysis of
twentieth-century America. He traced the roots of the phenomenon
identified by Tocqueville to a reaction to the hierarchies and roles imposed
by monarchical, aristocratic, and feudal societies. Bellah, following many
other thinkers, pointed to the Protestant Reformation as a reflection of a
kind of incipient individualism—a rejection of the need for a mediator
between a person and his god. And, with others, Bellah argued that in the
seventeenth century, John Locke’s image of pre-political man living in a

state of nature offers an exemplar of what he calls “ontological
individualism,” namely, “a belief that the individual has a primary reality
whereas society is a second-order, derived or artificial construct.”15 Machan,
Long, and others point to Thomas Hobbes as earlier theorizing man as
naturally and fundamentally atomized and alone, fearful and driven by
desperation to survive a war of all against all. This vision of individualism
served in part as Hobbes’s rationale for the creation of a totalizing state that
provided the only certain protection from lethal private violence. It was the
sole entity capable of providing a peaceful coexistence among people.

Bellah described the individualism of Hobbes and Locke as utilitarian,
in that it was driven by the desire to maximize self-interest in light of the
hoped-for benefits (in the case of Locke) or the promise of protection from
feared threats (in the case of Hobbes) that lead people to consent to form
and join society. Tibor Machan calls Hobbes’s approach “radical
individualism,” which understands human beings as “numerical separate
bare particulars.”16 Subsequent thinkers, including Adam Smith, held that
the aggregated pursuit of individual interests can serve the good of the
general population, so long as the natural liberty of others is respected.17

However, with the advent of twentieth-century developments in
politics, economics, novel corporate forms, and modern psychology, Bellah
suggested that a new category of individualism emerged, with “the
autonomous individual” at its center, “presumed able to choose the roles he
will play and the commitments he will make, not on the basis of higher
truths” (or, one might add, lower fears), “but according to the criterion of
life-effectiveness as the individual judges it.”18 This is what he terms
“expressive individualism.”

In an influential essay entitled Atomism, Canadian philosopher Charles
Taylor described (and criticized) a vision of society, rooted in seventeenth-
century political theories such as those of Hobbes and Locke, composed of
discrete individuals seeking to fulfill individual ends. As the name
“atomism” suggests, this conception rests upon an understanding of human
nature and the human condition as reductively and relentlessly
individualistic. On Taylor’s account, it posits unconditional and inalienable
individual rights and freedoms, but no corresponding obligations or

“principle of belonging” to the community. Atomism rests on the premise
of “the self- sufficiency of man alone, or if you prefer, of the individual.”19

Atomized individualism defines human flourishing as the exercise of
the freedom of the will. Taylor suggested that the proto-Atomist Hobbes
rejected the notion of natural ends or perfections that determine in what
human flourishing consists. Instead, he defined persons fundamentally as
“agents of desire”—defined by the objects of their will: “Whatsoever is the
object of any man’s desire … that is it which he for his part calleth good.”20

Indeed, under this view, a human being’s very attachment for life is driven
by the “desire to go on being agents of desire.”21 In its modern form, Taylor
argued, atomized individualism emphasizes the freedom to “choose life
plans, to dispose of possessions, to form one’s own convictions, and within
reason to act on them, and so on.”22

In his thoughtful taxonomy and genealogy of “individualisms,”
Roderick Long likewise identified “atomistic” individualism, which he
associated with Hobbes and others, as a conception of human beings “as
radically separate selves locked in a struggle for survival or power.”23 This
individualistic vision of human identity only recognizes as binding those
moral demands that cohere with the will, interests, and preferences of the
individual. There are no “unchosen obligations” within this anthropology.

Political philosopher Michael Sandel likewise identified a conception
of the person, which he termed “the unencumbered self,” that closely
resembled the atomized individualism flagged by Taylor and others. The
occasion for Sandel’s observation was his critique of John Rawls, whose
late twentieth century political theory is arguably among the most
influential in modern American politics, law, and public policy. In his essay
entitled The Procedural Republic and the Unencumbered Self, Sandel takes
Rawls to task for building his theory of justice and political liberalism on a
vision of the person that is false and impoverished. According to Sandel,
Rawls seeks to translate and adapt the moral theory of Immanuel Kant, who
famously located the foundation of the moral law not in any discernible
natural ends or externally manifest purposes of human life, but rather from
within the human subject himself, capable of autonomous will—a “subject
of ends.” According to Kant, for the individual autonomous will that is the

source of moral principles and judgment to be truly free, it must not be
conditioned by or responsive to external influences. Thus, in Sandel’s
words, “the rational being must be made the ground for all maxims of
action.”24 In this way, the acting subject—the self—is prior to the moral
ends that he pursues.

Sandel suggested that Rawls sought to adapt this general principle,
abstracted from Kant’s complex philosophy of German Idealism, and
translated it into a form palatable to modern American political sensibilities.
Rawls posited that it was not appropriate to build a set of rules for the
community based on conceptions of normative ends or “the good.” Instead,
for a pluralistic polity whose members strongly disagree about ultimate
goals for and the meaning of life, the “right”—the operational regulative
principles of justice that govern the community—must take precedence
over and be prior to “the good.” In Rawls’s words, “We should therefore
reverse the relation between the right and the good proposed by teleological
doctrines, and view the right as prior.”25 Accordingly, Rawls argued that the
rules adopted by a polity should not be rooted in a particular vision of the
good life, but instead should merely provide background procedures and
conditions that allow individuals to pursue their own purposes and plans.
Rawls envisioned a procedural framework to provide equal liberty for all,
admitting only those inequalities that would benefit the least advantaged
members of the community.

Sandel noted that for Rawls’s procedural vision to work, the individual
self must be understood as prior to and not determined or defined by any
purposes or ends (just as “the right is prior to the good”).26 Thus, the vision
of human identity at the core of Rawls’s political philosophy was an
“unencumbered self.” According to Sandel, Rawls’s vision “ruled out
constitutive ends. No project could be so essential that turning away from it
would call into question the person I am.”27

Having separated the person from defining ends and purposes, the
essence of human identity for Rawls was not to be found in the object of
one’s choices, but rather in the capacity to choose itself. This is an
anthropology of the solitary, free, and independent choosing self. And the
realm of choice extends not only to pathways of action, but also the

construction of ultimate meaning. “Freed from the dictates of nature and the
sanction of social roles, the human subject is installed as sovereign, cast as
the only author of moral meanings there are.”28 Rawls’s person was, in
Sandel’s words, a “self-originating source of valid claims.”29

This vision of the unencumbered self for whom no external purposes or
relationships can be constitutive of identity causes severe problems for a
coherent theory of moral obligation to the community and indebtedness to
others, especially for those others to whom “more than justice is owed.”

The anthropology grounding American public bioethics is not merely
individualism, it is a relatively modern iteration of this conception of
human identity, namely, expressive individualism. This vision of
personhood understands human flourishing as the pursuit of projects of
one’s own invention and choosing—endeavors that express and define our
true selves. To more fully grasp how expressive individualism animates the
law and policy concerning bioethics in America, it is useful to turn once
again to Bellah, Taylor, and briefly to Alasdair MacIntyre.

EXPRESSIVISM

As noted above, Bellah identified “expressive individualism” as a reaction
to the more utilitarian version of individualism that placed a greater
premium on the net social goods that emerge from the aggregated pursuit of
self-interested individuals operating within a well-regulated system of laws.
By contrast, expressive individualism “holds that each person has a unique
core of feeling and intuition that should unfold or be expressed if
individuality is to be realized.”30 Bellah connects this development in self-
understanding to the Romantic literary movement of the eighteenth and
nineteenth centuries as well as the evolution of psychotherapy combined
with new managerial corporate practices and culture in the twentieth
century. He pointed to American poet Walt Whitman as a pristine
representative of expressive individualism whose “Leaves of Grass” is an
anthem of sorts. Whitman wrote “I celebrate myself / I loaf and invite my
soul” (lines 1 & 4). Whitman saw enormous promise in American freedom
and viewed its highest use as facilitating the exploration and expression of
the individual’s inner self. Bellah likewise cites the work of Emerson,

Thoreau, and Hawthorne as emphasizing the “deeper cultivation of the self”
instead of individualism as a vehicle for maximizing utilitarian ends.31

In his Journals, Ralph Waldo Emerson clearly articulates this vision of
an internally generated individual quest for self-expression:

A man contains all that is needful to his government within
himself. He is made a law unto himself.… Good or evil that can
befall him must be from himself.… There is a correspondence in
the human soul and everything that exists in the world; more
properly, everything that is known to man. Instead of studying
things without, the principles of them all may be penetrated into
within him.… The purpose of life seems to be to acquaint a man
with himself.… The highest revelation is that God is in every
man.32

In its modern form, Bellah observed that expressive individualism
reorients the moral life from honoring external normative obligations
toward the quest for self-fulfillment. Bellah worried that this, in fact, leads
to confusion and dislocation: “With the freedom to define oneself anew in a
plethora of identities has also come an attenuation of those common
understandings that enable us to recognize the virtues of the other.”33 The
freedom of the inward turn in expressive individualism, defining the self by
its ability to choose rather than the object of its choice, can be disorienting.

Charles Taylor provided a fascinating intellectual genealogy, both
literary and philosophical, that deepened and extended Bellah’s reflections.
Throughout multiple books, essays, and lectures, Taylor identified a
profound reconfiguration of human self-understanding beginning in the
eighteenth century.34 Born out of a reaction to what Taylor described as an
austere morality, in which people were obliged to behave in ways that
conformed to rigid external standards of right and wrong, a new vision of
human identity and flourishing emerged that turned inward to the interior
self as a source of meaning and guidance. French philosopher Jean-Jacques
Rousseau developed the notion of a voice of nature within—le sentiment de
l’existence—that is the true source of moral authority, rather than the

external standards set or opinions held by others. Indeed, Rousseau worried
that such dependence on the opinion of others was a primary source of
confusion and error. Taylor noted that “in this first transposition of the
morality of sentiment we’re beginning to see emerge the modern form of
individualism.”35 Taylor also drew attention to Rousseau’s innovative
conception of freedom, which though related is not identical to his
conception of the inner voice as authoritative moral source. Rousseau’s
notion of “self-determining freedom,” like the inner voice of sentiment, was
an endogenous or internally generated quality.36 In Taylor’s words, self-
determining freedom “is the idea that I’m free when I determine the
conditions of my own existence from out of myself.”37

Rousseau’s conception of an authoritative and self-defining inner voice
was developed and extended further by writers and artists of the later
eighteenth and nineteenth centuries such as Shelley, Byron, Wordsworth,
and the other Romantic poets (including also non-Romantic literary figures
such as Goethe) who rebelled against the classical emphasis on harmony,
reason, and tradition as unduly confining strictures on artistic expression.
But these artistic and literary developments added a new dimension,
namely, the notion of “originality”—“the notion that each one of us, in
listening to that voice within, is called on to lead a form of life, a way of
being human, which is peculiar to himself or herself.”38

Taylor held up German critic and writer Johann Herder (1744–1803) as
a representative proponent of this new inward-turned truth-seeking,
creativity, and originality. According to Herder, “each human being has his
own measure, as it were an accord peculiar to him of all his feelings to each
other.”39 In this way, expressivism constitutes a radical refinement to pre-
Socratic philosopher Protagoras’s assertion that “man is the measure of all
things.”40 Here, every person constitutes his own measure. From the
realization that one’s unique truth is inside—that it must be discovered by
searching the depths of one’s inner feelings, and that the truths are original
and unique to the subject—there emerges an imperative to live according to
one’s own originality. And living according to one’s originality—following
the path discovered by searching out one’s own inner depths—frequently

requires actions that conflict with the accepted standards and norms of one’s
community. This is what Taylor called the “ethic of authenticity.”41

This striving for one’s own internally generated goals and aspirations,
over and above the norms and traditions of one’s peers, is readily seen in
the literature to which Taylor alluded. Goethe’s Faust harnessed the dark
powers of Mephistopheles and black magic to pursue his passion for
Gretchen, rejecting and violating the religious standards of his community.
Tirso de Molina’s Don Juan (and later Mozart’s Don Giovanni) imposed
their wills on vulnerable others in pursuit of their own desires, against the
mores of the time. Tennyson’s Ulysses left the comfort (and boredom) of
hearth and home in Ithaca to pursue adventure and glory once again (“Made
weak by time and fate, but strong in will / To strive, to seek, to find, and not
to yield”).42 The Byronic hero Manfred failed to harness dark supernatural
powers to alleviate his own suffering at the loss of his beloved, and boldly
embraced death rather than religious redemption (“’Tis not so difficult to
die!”).43 This echoed the earlier boldness and individualism of John
Milton’s Satan from Paradise Lost, who defiantly denies his creaturely
status before God and asserted that he and his fellow fallen angels were
made by their own hands; the power they wield is their own:

That we were formd then sais thou? And the work Of secondarie
hands, by task transferd
From Father to his Son? Strange point and new! When this creation
was? Remembers thou
Thy making, while the Maker gave thee being? We know no time
when we were not as now; Know none before us, self-begot, self-
rais’d
By our own quickening power, when fatal course
Had circled his full Orbe, the birth mature Of this our native Heaven,
Etherial Sons.
Our puissance is our own, our own right hand Shall teach us highest
deeds, by proof to try Who is our equal.44

Taylor noted that this ethic and imperative of authenticity—an
individualism of self-fulfillment—not only requires searching exploration
of one’s inner sentiments for the truth unique to the subject, but also
expression of the truths discovered in this process. To realize the truth of
who we are (and to live it most fully) it is necessary to express our inner
voice and make it concrete. This is a creative act of originality that makes
manifest the unique truths about ourselves and our purpose. This, in turn,
reveals the radical individuation of human beings: we are original and
distinct, and the truth about us can only be fully known by us and revealed
through subsequent expressive actions. The complete truth about the
individual is inaccessible and opaque to others, only made available by
expression. Taylor wrote, “What the voice of nature calls us to cannot be
fully known outside of and prior to our articulation / definition of it.… If
nature is an intrinsic source, then each of us has to follow what is within;
and this may be without precedent.”45

Given its singular focus on excavating the inner depths of the self to
discover (through expression) the truth of who we are and what constitutes
our fulfillment, Taylor worried that this culture of expressive individualism
would lead to the erosion of social and familial ties, and render
unintelligible obligations to others. Even relationships of marriage and
family might be measured and embraced or abandoned strictly according to
whether and how much they contribute to one’s self-fulfillment. Taylor was
also concerned about the possibility of a thoroughgoing relativism, wherein
one does not feel authorized to criticize or even fully grasp the choices of
others. Yet, at the same time, he identified a new category of harm that
emerges in a culture of expressive individualism, namely, the failure to
receive, accept, and appreciate the expression of others’ inner depths.
Taylor wrote, “the notion that everyone has a task to become their own
person—the particular, original person that they are—complementing that is
the belief that in order to do this they need the recognition of others.”46 To
fail to recognize the expression of other selves is a violation and a harm to
them.

Taylor noted that in the second half of the twentieth century, expressive
individualism moved beyond the domain of writers and artists and was

embraced by a substantial segment of the American (and broader Western)
population at large. Sensuality and sexual fulfillment emerged in the latter
part of the twentieth century as particularly important vehicles of self-
realization. He noted the American sexual revolution and the Flower
Generation of the 1960s as illustrative in this regard.

In his groundbreaking work After Virtue, philosopher Alasdair
MacIntyre famously noticed a similar turn in modern moral philosophy, in
the popularity and embrace of the theory of “emotivism,” a philosophical
doctrine that treats statements of moral judgment as merely expressions of
the speaker’s own particular feelings of personal approval or disapproval.
For example, the expression “murder is wrong” would be read as “I
personally disapprove of murder.”47

MacIntyre likewise recognized the rise of an anthropology that closely
resembles what here is termed expressive individualism more broadly,
noting that proponents of this view declare that “I am what I myself choose
to be.”48 MacIntyre noted that as far as moral authority is concerned, “the
individual moral agent, freed from hierarchy and teleology, conceives of
himself and is conceived of by moral philosophers as sovereign.”49

THE ANTHROPOLOGY OF EXPRESSIVE INDIVIDUALISM

Aided by Bellah’s, Taylor’s, Sandel’s, and MacIntyre’s insights, the
anthropology of expressive individualism comes into sharp relief. In its
pristine form, expressive individualism takes the individual, atomized self
to be the fundamental unit of human reality. This self is not defined by its
attachments or network of relations, but rather by its capacity to choose a
future pathway that is revealed by the investigation of its own inner depths
of sentiment. No object of choice—whether property, a particular vocation,
or even the creation of a family—is definitive and constitutive of the self. In
Sandel’s words, it is an “unencumbered self.”50 Because this self is defined
by its capacity to choose, it is associated fundamentally with its will and not
its body. The individual—the person—is thus understood to be identical
with the exercise of this particular type of cognition. Therefore, expressive
individualism is inevitably dualistic—privileging the mind while
subordinating the body in defining the person.

Flourishing is achieved by turning inward to interrogate the self’s own
deepest sentiments to discern the wholly unique and original truths about its
purpose and destiny. This inner voice is morally authoritative and defines
the route forward to realizing the authentic self. The truth about the self is
thus not determined externally, and sometimes must be pursued
counterculturally, over and above the mores of one’s community. As noted
previously, in Sandel’s words, the expressive individual self is a “self-
originating source of valid claims.”51

Relatedly, as Long and Taylor point out, expressive individualism does
not recognize unchosen obligations. The self is bound only to those
commitments freely assumed. And the expressive individual self only
accepts commitments that facilitate the overarching goal of pursuing its
own, original, unique, and freely chosen quest for meaning.

This is the anthropology that will emerge from an inductive analysis of
several of the vital conflicts of American public bioethics. Before
proceeding to that analysis, however, it is important to examine some of the
general criticisms leveled against expressive individualism, as well as some
of the alternative virtues, goods, and practices that can correct the errors of
this anthropology.

FORGETTING THE BODY

What, then, is problematic about the anthropology of expressive
individualism and why might it be an ill-suited vision of human identity and
flourishing for American public bioethics? To put it most succinctly,
expressive individualism fails because it is, to borrow a phrase from
Alasdair MacIntyre, “forgetful of the body.”52 Its vision of the human
person does not reflect and thus cannot make sense of the full lived reality
of human embodiment, with all that it entails. As mentioned previously,
human beings experience themselves and one another as living bodies, not
disembodied wills.

Because human beings live and negotiate the world as bodies, they are
necessarily subject to vulnerability, dependence, and finitude common to all
living embodied beings, with all of the attendant challenges and gifts that
follow. Thus, the anthropology of the atomized, unencumbered, inward-

directed self of expressive individualism falls short because it cannot render
intelligible either the core human realities of embodiment or recognize the
unchosen debts that accrue to all human beings throughout their life spans.

An inexorable reality of embodied human life is dependence. Most
obviously, given the way human beings come into the world, from the very
beginning they depend on the beneficence and support of others for their
very lives. Among mammals, human beings in their infancy and youth have
an unusually long period of dependence for basic survival—infants and
babies require help with nutrition, hygiene, and general protection. Of
course, this dependence on others for basic needs is not merely a transient
feature limited to the beginnings of human life. There are, of course, those
who spend their entire lives in conditions of radical dependency. But
because all human beings exist as corruptible bodies, periods of serious
illness, injury, and senescence create cycles of often-profound dependency
throughout the life span for everyone. Consider, due to the very nature of
living as bodies, in MacIntyre’s words, all human beings exist on a “scale
of disability.”53

Given the role of dependence intrinsic to bodily existence, if human
beings are to flourish, they must “receive and have an expectation of
receiving the attentive care [we] need when [we are] very young, old and
ill, or injured.”54 The care that human beings need must be unconditional
and noncontingent. The weakest and most afflicted among the human
community will, of course, require the most intensive and sustained care.

The paradigm for such caregiving—upon which nearly everyone relies
in his early life—is provided by parents. MacIntyre argued that in its fullest
expression, good parental care makes the object of concern this child; the
commitment is unconditional and does not depend on the child’s
circumstances (such as disability), and the needs of the child are treated as
paramount, over and above those of the parents. MacIntyre pointed to
parents of disabled children as the pristine model of this form of care.55 The
same need for unconditional and noncontingent care arises again, of course,
as human beings move towards the end of life’s spectrum, if not before.

French philosopher Bertrand de Jouvenel similarly noticed the
universal experience of human dependency. He also noted parental love and

care are essential to development and flourishing. In his words, parents
provide a “humanized cosmos” for the growing child who is welcomed and
loved unconditionally.56

The anthropology of expressive individualism misses this basic feature
of human life because it misses its lived realty; dependence is not part of
the picture. Expressive individualism’s image of the human person is one
fully formed, at the height of his cognitive powers, turning inward to learn
the truths that, when expressed, will form his identity and shape his life’s
course. Jouvenel criticized social contract theorists for similarly forgetting
the dependence of life in its early stages of development: “These are the
views of childless men who must have forgotten their childhood.”57 Like
Milton’s Satan and fallen angels, the expressive individual self “know[s] no
time when [it was] not as now; Know none before [it], self-begot, self-
rais’d / By [its] own quickening power.”58 A purely inward-looking and
individualistic anthropology can give no intelligible or justified account of
uncompensated, unconditional, and often self-sacrificial care of others.
There is no warrant to give more than one could ever hope to receive. There
is no imperative to give to those from whom nothing will ever be repaid in
return.

The dependence of embodied human beings is not limited to relying on
others for mere biological survival. The development of the capacities
needed to negotiate and thrive in the world inexorably depend on the
support of others. As Alasdair MacIntyre observed in his book Dependent
Rational Animals, it requires the selfless and sustained work of countless
others to build an individual’s capacities for freedom and flourishing, such
as the abilities to defer gratification, to imagine and choose from alternative
futures, to obtain useful knowledge about the world, to cooperate with and
care for others, and to come to know yourself. These are the qualities
needed to become, in MacIntyre’s words, an “independent practical
reasoner.”59 Development toward this goal requires a family and a
community of persons who are willing to make the good of others their own
good. In this way, individuals can become the kind of people who are
capable of making the good of others their own. Charles Taylor noted that
even the traits required for thriving under the ambit of expressive

individualism depend on social structures and conditions that nurture the
development of such capacities.60 Indeed, even a theory of the “autonomous
self” requires a culture and civilization in which such an idea can emerge
and be transmitted.

A single-minded focus on exploring and expressing the inner depths of
the atomized self does not, within its own normative framework, include
robust categories of community and cooperation for the sake of others. This
is the grounding insight of Sandel’s critique of Rawls: “What the difference
principle requires but cannot provide is some way of identifying those
among whom assets I bear are properly regarded as common, some way of
seeing ourselves as mutually indebted and morally engaged to begin
with.”61 An unencumbered self, without constitutive ties to others, does not
recognize an imperative to share for the sake of the least advantaged when
it is not in its own interest to do so.

Even the development and knowledge of one’s own personal identity—
the touchstone of expressive individualism—requires sustained support
from others. MacIntyre argued that without a narrative context, the
individual “story telling animal” is dislocated and disoriented.62 In After
Virtue, MacIntyre elaborated: “I can only answer the question ‘What am I to
do?’ if I can answer the prior question ‘Of what story or stories do I find
myself a part?’ ”63 Who we are is rendered intelligible by the narratives that
form us—even if one chooses to rebel against the normative direction and
embedded ends of the traditions and communities that have shaped this
story. But the point is that one does not create his or her own narrative ab
initio. Self-identity is in large part shaped by the inheritances, traditions,
and cultures of others—family, community, civilization. Sandel puts it this
way: “I move in a history I neither summon nor command, which carries
consequences nonetheless for my choices and conduct.”64 And this history
is the product of generations who have come before and will be sustained
by those not yet born.

Moreover, human beings come to understand and refine their identities
in conversation with others. Taylor called this the “dialogical” character of
human life.65 We understand ourselves not only by expressing ourselves, but
by virtue of the reactions and responses of others—especially in genuine

friendship with those whose goods we share. In collaboration with and in
struggle against others, we give an account of ourselves as well as hold
others to their own accounts. This results in a process of refinement and
clarification that enhances and deepens self-understanding. Thus, the self-
expression that is key to identity and flourishing in the anthropology of
expressive individualism requires others for recognition and response. This,
too, is a form of human dependence.

The anthropology of expressive individualism is monological and
ahistorical. As MacIntyre wrote, “from the standpoint of individualism I am
what I myself choose to be … a self that can have no history.”66 The
unencumbered self is by definition incapable of constitutive relationships. It
cannot genuinely make the good of another its own good.

Moreover, its good is not fully knowable by others; it is accessible only
in full through self-interrogation and then expression. The unencumbered
self is thus consigned to profound loneliness. Sandel captured this tragic
circumstance in this arresting passage: “However much I might hope for the
good of a friend and stand ready to advance it, only the friend himself can
know what that good is.… Where deliberating about my good means no
more than attending to wants and desires given directly to my awareness, I
must do it on my own; it neither requires nor admits participation of
others.”67

It is clear that the life of embodied human beings is characterized by
vulnerability and natural limits. Dependence is a central fact of human life.
To live as a human is to incur debts—to our families and caregivers, our
friends, our communities, and our civilization. In the words of the late
British philosopher Roger Scruton:

For us humans, who enter a world marked by the joys and
sufferings of those who are making room for us, who enjoy
protection in our early years and opportunities in our maturity, the
field of obligation is wider than the field of choice. We are bound
by ties we never chose, and our world contains values and
challenges that intrude from beyond the comfortable arena of our
agreements.68

An anthropology of expressive individualism lacks the resources to
recognize, much less repay these debts. It cannot give an intelligible
account of the debt owed to those who kept us alive and taught us what we
needed to thrive in the world. It cannot explain the role played by and
obligations incurred to others whose friendship and mutual calling to
account led to the refinement and clarification of our own self-
understanding. A fortiori, as a solely inward-looking anthropology,
expressive individualism does not supply a justification for the payment of
those debts in nonreciprocal and unconditional fashion to others who have
nothing to offer us by way of recompense. It lacks a principle of belonging
or moral obligation sufficient to build a community or civilization that will
not serve one’s interests beyond this life.

The failure of expressive individualism to respond to the reality of
embodied human lives regarding their mutual dependence, integrated
constitutive goods and histories, and shared unchosen obligations to one
another is also associated with an array of social pathologies that are
concerning in themselves, but also loom large for American public
bioethics, as will be seen in the chapters that follow.

First, as Charles Taylor and Robert Bellah have observed (echoing
related concerns raised by Alexis de Tocqueville), a purely inward-directed
atomized self becomes untethered from social ties, including the most
intimate family connections. The inner depths of the self which hold the
sources of meaning and normative orientation are never fully transparent to
others, raising the specter of a thoroughgoing relativism. At the same time,
Bellah observes, the individual experiences alienation and dislocation, as he
longs for community and shared values, but is isolated and enclosed within
his own sentiments.

The conception of human relationships not as a web of mutual
indebtedness and shared concern but rather as merely instrumental and
transactional exacerbates existing inequalities and compromises the
networks of support for the weakest and most vulnerable. Jouvenel
colorfully refers to this as a “legalitarian fiction” that “results in a chartered
libertarianism for the strong.”69

The anthropology of expressive individualism, with its singular focus
on the individual self as the sole source and summit of unique meaning,
creates not only loneliness and alienation, but enhances the fear of death. In
an address to the International Academy of Philosophy in Lichtenstein in
1992, Nobel Laureate novelist, poet, historian, and Russian dissident
Aleksandr Solzhenitsyn elaborated:

Man has lost the sense of himself as a limited point in the universe,
albeit one possessed of free will. He began to deem himself the
center of his surroundings, adapting not himself to the world but
the world to himself. And then, of course, the thought of death
becomes unbearable: It is the extinction of the entire universe at a
stroke.70

This death-haunted existence looms large for the vital conflicts of
public bioethics, as will be seen in subsequent chapters.

A thoroughgoing and singular commitment to expressive individualism
may even result in a lessened commitment to human rights. In his 2016
book, What is a Human?, social scientist John Evans undertook a
fascinating empirical study of the relationship between one’s
anthropological accounts of human identity and flourishing and attitudes
toward “genocide, torture, experimenting on persons against their will,
buying body organs from poor people, committing suicide to save money
for families.”71 He found those who embraced a philosophical anthropology
that privileges the cluster of traits and qualities most connected to
expressive individualism (namely, the active cognitive capacities to invent
and pursue future-directed plans) were “less supportive of human rights.”72

Finally, the erosion of social ties noted by Bellah and Taylor (drawing
again upon Tocqueville) could have deleterious consequences for self-
government more generally. The so-called intermediate associations that
comprise “civil society” are diminished as expressive individualism
advances. People turn away from such shared enterprises, retreating into
their own narrow circle of individual concerns. Without the buffer of civil
society between the state and the individual, Bellah and his coauthors

expressed grave worries of a resulting “mass society of mutually
antagonistic individuals, easy prey to despotism.”73

Given the failure of expressive individualism to account for
fundamental realities of embodied human life, including especially its
uniquely relational and interdependent features, and the potential individual
and shared adverse social consequences that follow, what is to be done?

Here it is useful to turn again to the work of Alasdair MacIntyre for
guidance.

AN ANTHROPOLOGY OF EMBODIMENT

Because the anthropology of expressive individualism is impoverished due
to its forgetfulness—of the body, of human interdependence, of the
consequent gifts received from and debts owed to others—the development
of a fuller and truer vision of human identity and human flourishing can
only be forged by a kind of remembering. In order to develop the virtues
and practices necessary to participate and thrive in what Macintyre calls the
“networks of giving and receiving,” we must remember who we are and
how we got here.74 First, we must remember that we entered the world
profoundly weak and vulnerable, dependent upon others for our very
survival. We needed others to feed us, to protect us, to keep us clean and
warm, and to nurse us back to health when we were sick. We needed others
to teach us how to behave, the habits of forbearance and delayed
gratification, the discipline to restrain our selfish animal impulses to put
ourselves first, and the moral vision to see others as objects of respect and
concern, with goods that we share in common. We needed others to react to
our self-understanding and expression, to help us to define ourselves both in
collaboration and competition with them. We needed a family, a
community, and a civilization to transmit expectations, values, and
standards, which shaped us as we accepted or rejected these sources of
meaning in full or in part.

We need to remember the fact that even in a normal life trajectory, we
will need this care and support again, in periods of illness and senescence.
As MacIntyre writes, it matters “that those who are no longer children
recognize in children what they once were, and those who are not yet

disabled by age recognize in the old what they are moving towards
becoming and that those who are not ill or injured recognize in the ill and
injured what they often have been and will be and always may be.”75

Those who cared for us and who will care for us in our moments of
profound vulnerability, especially when we could not and will not offer
anything by way of recompense, did and will do so unconditionally and
noncontingently. Those who cared for us knew that these efforts would
likely be vastly disproportionate to any reciprocal support that might be
offered back in return in the future. They gave us care even when all we
could do was passively receive it. This was and will be the care required to
sustain and shape us, by virtue of our lives as embodied human beings.

Remembering who we are and where we came from in this way should
awaken in us a profound sense of gratitude and a sense that a fitting
response to such care is to become the kind of person who makes the goods
of others her own—to become one who cares for others without condition
or calculation. When one remembers how he came to be who he is, through
this sustaining network of unconditional care and concern, he becomes alive
to the fact that it is not possible to repay those who supported us; the only
response is to extend the same care and concern to others in need, not
because it satisfies a balanced owed, but because this is what it means to
become one who is responsive to others solely because of their needs,
without calculation or self-interest. We will be able to offer such care and
concern because in having received it, we become people capable of
extending it to others.

Within this framework, one’s gaze is not fixed, limited to her inner self
and its depths. One’s attention instead turns outward, understanding that
flourishing is becoming a participant and steward of the network of giving
and receiving that sustains life as humanly lived. This outward-facing
vision is augmented, strengthened, and sharpened by memory and moral
imagination.

What goods, virtues, and practices are necessary, then, to participate in
and contribute to the network of giving and receiving that is a response to
the interdependence of embodied human life? They are what MacIntyre has
called “the virtues of acknowledged dependence.”76 It is through the

cultivation and practice of these virtues that one becomes a person capable
of the relationships of “uncalculated giving and graceful receiving” that
characterize human flourishing.77 The virtues of uncalculated giving include
just generosity, hospitality, and “misericordia.” Just generosity is manifest
by acting in the aid of another merely on the grounds of her apparent need.
It is just in the sense that it is fitting to return what we have received, and it
is generous in the sense that is offered in genuine regard for the particular
other in need. The measure of the response owed is proportionate to that
need, and not a function of self-interest or rational calculation of likely
return to the caregiver. Hospitality is the duty to render aid to the stranger
simply because he or she is a stranger, ungrudgingly and without condition.
Misericordia is the virtue of taking on the suffering of another as your own,
which can oblige one to provide care and assistance, or if this is not
possible, to accompany the other in his or her suffering.

The principal virtue of graceful receiving is the practice of gratitude.
This is the fitting recognition and response to the care of others, past,
present, and future who support us in our dependence. Again, the fruits of
such gratitude include the desire and disposition to extend the virtues of
uncalculated giving to those in need, because they are in need.

Another good that flows from both retrospective and anticipatory
gratitude for the care and concern of others, as well as the giftedness of life
more generally, is humility. As Michael Sandel pointed out, recognition that
our life and talents are not of our own making can be a powerful
counterweight to prideful self-regard. Moreover, it can temper a disposition
toward rational mastery and a purely extractive attitude toward ourselves,
others, and the natural world. If we did not create ourselves and depend
upon others throughout our lives, the world and those in it are not simply
materials for us to rationally order, harness, and exploit for our own
projects. This “ethic of giftedness,” as Sandel called it, awakens the felt
need to share with others—including especially those who were not as
fortunate in the natural distribution of gifts and benefits.78 Embracing the
gifts of one’s life with gratitude and humility makes one especially alive to
the least advantaged who have not received the gifts they need to flourish
on their own. This might provide the principle of sharing that is missing

from an anthropology of isolated individual wills seeking to realize their
own self-invented dreams.

Moreover, gratitude and the humility that travels with it can give rise to
what Sandel (quoting theologian William F. May) calls “openness to the
unbidden.”79 This is a disposition of welcoming and hospitality towards
others in all their uniqueness and particularity, a toleration of imperfection
and difference. This is the opposite of raw choice, rational mastery, and
control. Sandel notes that this virtue is most clearly demonstrated (and
learned) in a parent’s acceptance of her child as a gift, rather than a project
or vessel into which a parent pours his own hopes and dreams. Openness to
the unbidden is closely tied to MacIntyre’s vision for “the paradigm of good
motherhood and fatherhood” which is seen most clearly and beautifully in
the parents of seriously disabled children.80

Gratitude for the gifts of others’ support and life itself is also fertile
ground for the cultivation of the sense of solidarity—extending one’s field
of concern to encompass those beyond his immediate circle of family,
friends, and community, to encompass the wider circle of humanity. It
grows from the recognition that dependence on the generosity and
uncalculated giving of others is a universal condition of human beings,
owing to their embodied existence.

Another fruit of gratitude and the acknowledgement of human
interdependence is a sense of human dignity. While “dignity” is a famously
contested concept, the sense here is one of the intrinsic equal worth of all
human beings who are alike in vulnerability, neediness, and subject to
natural limits. All human beings stand in the vast and particular networks of
giving and receiving necessary for human flourishing. All human beings are
created and embodied, unrepeatable, precious, and fundamentally equal. All
are equidistant from Pascal’s “two infinities” between which humankind is
situated.81 The equal dignity of all human beings in virtue of their humanity
becomes clear once all of the tests and standards (mostly focused on
cognition and active powers) devised by the strong to measure the ultimate
worth of the weak, according to the former’s interests, are stripped away
and abandoned.

For these fruits to grow from gratitude and the insights that follow from
it, it is necessary to cultivate and practice the virtue of truthfulness. It is
necessary to be honest with and about oneself and his nature as an
embodied and thus interdependent being. And one must be honest with
others as the dialogical nature of our shared life unfolds.

Having considered the many virtues of acknowledged dependence, it is
possible to see one overarching good under which all of these goods and
practices necessary to the flourishing of the individual and shared lives of
embodied beings might be situated. And that is the good of genuine
friendship. Just generosity, hospitality, misericordia, gratitude, humility,
openness to the unbidden, solidarity, dignity, and truthfulness, are all virtues
and goods that cohere within the concept of friendship, understood as a
relationship of persons who make one another’s goods their own.
Friendship, in this sense, is an essential good for the flourishing of
embodied beings. One is supported and sustained throughout his life by
those who make his good their own without calculation or expectation of
return. And by receiving such support, one develops into the kind of person
who can and wants to be just this sort of friend.

What kind of education of affections and inclinations is required to
sustain these goods and practices of virtues of acknowledge dependence?
To remember the body and its meaning for our lives and relationships, it is
necessary to cultivate the moral imagination. One must learn to see himself
in the dependent child, the disabled, and the elderly to remember his origins
and his future. And to feel gratitude to those who have in the past and will
in the future sustain his life and thriving. He must learn to see in those who
need aid the people who provide the opportunity for him to become a friend
through the practice of uncalculated and unconditional giving. These others
become the occasion for the practice of generosity, hospitality, misericordia,
humility, openness to the unbidden, solidarity, honesty, and respect for
dignity.

Alongside these virtues and goods, an additional corrective to the idea
of expressive individualism are practices that draw one’s gaze from inside
toward the outside. These are practices that take one outside of oneself, and
that reveal the reality of interdependence and relationality of life as

humanly lived. The paradigm for such a practice, which becomes directly
relevant to the discussions that follow about public bioethics, is parenthood.
Sandel describes parenthood as a “school of humility,” in which we ideally
accept children as gifts rather than products of rational control and place
their needs and futures above our own.82 The lived reality of dependence,
relationality, and intersubjectivity comes into sharpest relief between
parents and children. Becoming a parent makes it (sometimes painfully)
clear that one’s good is not entirely self-contained to the truth and goals
found solely by interrogating one’s inner depths.

The shift from an expressive individualist anthropology to one of
embodiment owing to parenthood can occasionally be seen in popular
culture. At the conclusion of his film Close Encounters of the Third Kind,
Steven Spielberg’s protagonist leaves his family to join the aliens on their
spacecraft to pursue his lifelong dream and obsession. In a documentary on
the making of the film, Spielberg observed that he wrote this ending before
he became a parent and “would never have made Close Encounters the way
I made it in ’77, because I have a family that I would never leave.”83

The radical reorientation of one’s perspective as a parent is not limited
to drawing his gaze outward only to his children, but it transforms how we
view all other people, within the paradigm of parent and child. In the
American sitcom “The Office,” the lead character Pam Beesley captures
this in her account of how she now views the creepy and villainous bondage
slave known as “The Gimp” in Quentin Tarantino’s dark but comic film
Pulp Fiction: “I used to watch Pulp Fiction and laugh, and now I’m like,
that poor gimp is somebody’s child!”84

Other practices that can shift the inward gaze outward include
participation in what Robert Bellah described as “communities of
memory”—associations with their own stories and traditions that “can
allow us to connect our aspirations for ourselves and those closest to us
with the aspirations of a large whole and see our own efforts as being in
part, contributions to the common good.”85

When Taylor, MacIntyre, Sandel, Bellah, and others focused their
critique of expressive individualism, primarily on the domains of academic
philosophy and the social practices of modern Western culture, they did not

focus on the institutions of the law. But as the subsequent chapters will
illustrate, expressive individualism is manifest there as well. Legal icon and
Dean of Harvard Law School Roscoe Pound (1916–1936) noted in his
magisterial work The Spirit of the Common Law that American law is
deeply animated by a conception of personhood akin to that identified by
Sandel, Taylor, and others. Indeed, Pound described American law as
“characterized by an extreme individualism,” such that “the isolated
individual is the center of many of its most significant legal doctrines,” and
features “an uncompromising insistence upon individual interests and
individual property as the focal point of jurisprudence.”86 Pound sketched
out a multilayered account of how this came to be, including the influences
of eighteenth century political theories, Puritanism, and other factors.
Harvard law professor and former U.S. Ambassador to the Holy See Mary
Ann Glendon likewise observed (and critiqued) the individualism at the
heart of much of American law which embraces as paradigmatic the “free,
self-determining, and self-sufficient individual.”87

Insights from this chapter about expressive individualism and the
anthropological “corrective” of recalling our embodiment and its meaning
will anchor the following analysis of three “vital conflicts” of American
public bioethics—the vexed legal and policy disputes over abortion,
assisted reproduction, and end-of-life matters. Expressive individualism is
the underwriting anthropology of all of these domains. Because this account
of human identity and flourishing omits the lived reality of human
embodiment, with all the consequent gifts and challenges of dependence,
vulnerability, and natural limits, it is not a suitable normative foundation for
the law and policy in this field. It cannot make sense of or respond justly or
humanely to those lives that are characterized by radical dependence, and
who are historically the victims of exploitation and abuse, such as the
victims identified by Beecher, the sharecroppers of Tuskegee, or the just-
aborted newborns discussed in the Kennedy hearings. What is needed is a
new vision and framework. In the chapters that follow I will explore how
the virtues of acknowledged dependence might be integrated into the habits
of thought and even the laws and policies of American public bioethics.

3

In Cases of Abortion

There is no more paradigmatic case in American public bioethics than Roe
v. Wade. This case emerged at the beginning of public bioethics in America
and has roiled law and politics ever since. Abortion involves complex
questions about the meaning and value of human life in its earliest stages,
questions of parenthood and procreation, the nature of killing and letting
die, the ethics of medicine, the definition of “health,” the contours of
freedom and autonomy, the demands of justice and equality, and the
concept of human dignity. It is the pristine exemplar of a “vital conflict”—a
zero sum struggle involving literal life and death decisions. All of these
questions unfold in the sui generis context of human pregnancy—a
circumstance uniting and integrating the bodies and fates of living human
beings like no other. And it remains the most bitterly contested public
question in American life.

It is also ubiquitous; the issue of abortion hovers above and lurks below
nearly every other vital conflict of public bioethics. The concepts of
privacy, liberty, equality, and dignity as articulated in American abortion
jurisprudence are raised in public matters of assisted reproduction. The
notions of personhood underpinning abortion law and policy emerge in
public conversations about the moral status of the living human embryos
that are created in in vitro fertilization and destroyed in embryonic stem cell
research. Judicial precedents of the U.S. Supreme Court on abortion have
been invoked explicitly to justify a constitutional right to assisted suicide
and euthanasia. No matter the public bioethical matter at issue, the
reasoning in abortion law and policy is invariably invoked, and the question

of how resolution of such vital conflicts might affect access to abortion is
raised. Accordingly, abortion law is the first locus of inductive inquiry
aimed at uncovering and critiquing the anthropological grounding of the
vital conflicts of American public bioethics.

Before proceeding, it is important to be clear that the inductive
analyses throughout this book focus on the law and its grounding
conception of human identity and human flourishing. It is not meant as a
diagnosis, commentary, or critique of the motives or anthropological
premises held by the people responding to the law in their individual
choices. It is not a sociological description of or normative judgment about
why people do or do not seek or perform abortions. It is, of course, relevant
to these reasons insofar as the law shapes and reflects the goods people hold
dear or the evils that they seek to avoid. But it would be a mistake to read
the discussion that follows as a direct assessment of decision-making at the
level of individual persons. In the real world, people’s reasons for action are
complicated, messy, and spring from a wide variety of sometimes
conflicting normative commitments, insofar as such choices are rooted in
careful and conscientious reflection at all. People frequently make choices
in response to intuition, social customs, internal or external circumstances,
desires, pressures, and whims. In short, the following analysis and the
conclusions that flow from it are one step removed from individual
decision-making. The discussion concerns whether the law as presently
constituted assumes a conception of persons and flourishing that captures
the fullness of embodied human life, one that remembers the body.

The framework for analysis in this chapter is the model for all that
follow. The primary question is: What vision of human identity and
flourishing anchors the relevant legal doctrines and principles of
enforcement? The law of abortion—like all law—exists to serve persons.
What, then, is its grounding vision of persons, their needs, and their nature?
As noted previously, my approach is inductive, aiming to evaluate the law
as it is, both as written and as applied. Seminal philosophical or policy
sources will be considered insofar as they illuminate the process and
substance of the law. Once the core anthropological foundation is surfaced,
it will be interrogated for its soundness and suitability to the human context

it is meant to govern. Is it a vision of personhood that takes embodiment
seriously and is thus fit for grounding law meant to protect and promote the
flourishing of beings who live, die, and encounter one another as bodies? Is
it a suitable anchoring conception of human identity for an area of law
centrally concerned with the meaning and consequences of human
embodiment, namely, vulnerability, dependence, and natural limits? Does it
allow consideration of the public questions in all their complexity? Or does
the underlying anthropological angle of vision prevent key dimensions from
being seen? If the anthropological foundation is wanting in these ways, how
can it be augmented and how might the law be improved to facilitate and
promote the goods, practices, and virtues necessary to construct and sustain
the networks of uncalculated giving and graceful receiving that are
necessary for the survival and flourishing of embodied beings?

This analysis first offers an overview of the law of abortion in America.
As will be explained, all legal and policy initiatives at the state and federal
level relating to abortion must conform to the narrow framework set forth
by the Supreme Court. Within these confined boundaries, the political
branches can regulate abortion to a limited degree, focusing mainly on
ancillary aspects of its practice. Accordingly, this section focuses its
discussion primarily on this overarching structure as set forth by the
relevant Court precedents, including the substantive and procedural
doctrine, the explicit factual and conceptual premises on which the Justices
have relied, the implicit or assumed axioms and postulates involved, the
sources of constitutional authority invoked, and the normative principles
that drive the Court’s analysis and conclusions.

This inductive analysis of the Court’s jurisprudence reveals that the
conception of human identity and human flourishing anchoring the
American law of abortion is that of expressive individualism, as described
in the previous chapter. A similar anthropological exploration of the key
seminal academic and philosophical works that reflect and inform the
Court’s decisions will offer further confirmation. I argue that because
expressive individualism is “forgetful of the body,” it cannot make sense of
or offer a fitting response to the consequences of embodiment in the context
of abortion, including matters relating to vulnerability, dependence, and

natural limits. In light of this critique, I will then reflect on how the
anthropology of American abortion law might be augmented and rendered
more human by integrating the goods, virtues, and practices needed to
support the individual and shared lives of embodied human beings.

AMERICAN ABORTION LAW

First, a descriptive account of the law of abortion in America. Because of its
unique genesis in Supreme Court jurisprudence, this is a relatively
straightforward task. The external boundaries of permissible abortion
regulation have been narrowly fixed by the Supreme Court itself since
1973. Thus, to understand the law of abortion in America at its most
fundamental level, there are six seminal sources of authority—all Supreme
Court precedents—that must be grasped. They are Roe v. Wade, Doe v.
Bolton, Planned Parenthood v. Casey, Stenberg v. Carhart (Carhart I),
Gonzales v. Carhart (Carhart II), and Whole Woman’s Health v. Hellerstedt.
Each will be taken in turn with the ultimate goal of synthesizing a view of
human identity and flourishing that animates the modern American law of
abortion.

ROE V. WADE AND DOE V. BOLTON

In January of 1973, abortion was outlawed or subject to significant
restrictions in the vast majority of U.S. states. Thirty states banned abortion
except in those instances when the mother’s life was at risk. Sixteen more
states prohibited abortion, subject to various combinations of additional
exceptions, such as when the woman’s health (physical or mental) was
endangered, cases where the pregnancy resulted from rape or incest, or
when the child would likely be born with a physical or mental disability.
Only four states took a broadly permissive approach to abortion, allowing it
for any reason until later gestational stages.1 But in the third week of that
month, in a single opinion, the United States Supreme Court swept aside all
of these laws and replaced them with a new rule and regulatory framework
of its own making, thus fanning into life what remains to this day arguably
the most controversial and bitterly contested issue in modern American law,
politics, and policy.

The case arose in Texas, brought by three parties seeking to challenge
that state’s law, which banned abortion unless the mother’s life was
endangered by the pregnancy. The parties included a doctor who sought
relief from state prosecution for performing unlawful abortions, a childless
couple advised not to have biological children who had stopped using birth
control, and “Jane Roe,” a young single woman from a difficult and
impoverished background seeking to terminate her pregnancy. Pursuant to a
1910 statute (the Three-Judge Court Act, repealed in 1976), the case was
heard by a panel of three federal trial judges in 1970. In a unanimous per
curiam opinion, the court found that the Texas law unconstitutionally
abridged the parties’ rights under the Ninth Amendment to the United State
Constitution, which provides that “the enumeration in the Constitution of
certain rights shall not be construed to deny or disparage others retained by
the people.”2

The Ninth Amendment had been widely viewed by courts and
commentators as an obscure and largely inert source of authority until 1965,
when Justice Goldberg controversially invoked it in his concurring opinion
in Griswold v. Connecticut.3 In that case, the Court struck down a law
forbidding the use of contraception by married couples. The majority
opinion written by Justice William O. Douglas famously identified an
unwritten “right to privacy” in the Constitution, implied by the concrete
language and logic of the First, Third, Fourth, and Ninth Amendments, that
extended to protect the intimacy of marital relations.4 Goldberg concurred
separately to locate the right to privacy in the Ninth and Fourteenth
Amendments.5

Despite finding the Texas law unconstitutional by extending Griswold’s
newly identified right to privacy to the context of abortion, the court
declined to enjoin its enforcement, under a doctrine of federal non-
interference (“abstention”) with state criminal prosecutions.6 But by
operation of the Three-Judge Court Act, the plaintiffs were permitted to
appeal immediately and directly to the U.S. Supreme Court without the
usual first step of seeking review of their claims in the U.S. Court of
Appeals (the intermediate appellate court in the federal system, where 99
percent of cases are finally adjudicated).7

Because of the unique procedural posture of the case, there was no
evidentiary hearing by the three-judge trial court. Instead, it was resolved
by the lower court strictly as a matter of law.8 Thus, when the case arrived
at the U.S. Supreme Court, there were no findings of fact on which the
Justices could rely. Every factual premise of the opinion in Roe v. Wade—
historical, scientific, medical, or sociological—was the product of the
Justices’ own private reflections, untested for reliability or accuracy by the
adversarial process.

The Supreme Court heard oral arguments in the case twice (owing to
Court vacancies) and issued its 7-2 opinion penned by Justice Blackmun on
January 22, 1973.9 It was a near-absolute victory for advocates of abortion
rights. Put most succinctly, the Court held that there is an unenumerated
fundamental right to privacy that included a right to abortion, arising from
the Due Process Clause of the Fourteenth Amendment (“No person shall be
deprived of life, liberty, or property without due process of law”).10

The Constitution nowhere mentions the word “privacy,” though there
are several provisions that clearly protect the good of privacy. For example,
the Fourth Amendment prohibits the government from conducting
unreasonable searches and seizures of persons and their “houses, papers,
and effects.”11 But unlike Justice Douglas, Justice Blackmun did not look to
the “penumbras formed by emanations” of these enumerated rights to
synthesize a broader right to privacy.12 Nor did he, like Justice Goldberg or
the three-judge district court below, look to the Ninth Amendment as its
source of authority. Instead, he invoked the controversial doctrine of
“substantive due process” to locate a right to privacy in the procedural
guarantees of the Fourteenth Amendment.13 The Supreme Court had
previously invoked this doctrine at the dawn of the twentieth century in a
case called Lochner v. New York to discover an unenumerated “freedom of
contract” that it relied on to strike down a state law designed to protect
laborers in bakeries from exploitation by their employers.14 The doctrine
holds that there are unstated substantive rights implied by the explicit
procedural safeguards of the Fourteenth Amendment. The challenge and
source of controversy is how such unstated rights are to be identified and
applied. Some Justices have limited the range of possible unenumerated

rights to those that are deeply rooted in the nation’s law, history, and
traditions. Others have drawn the boundary at those rights that are thought
to be “implicit in the concept of ordered liberty” and essential to any just
system of laws.15 Despite these efforts at cabining the discretion of judges
applying the doctrine of substantive due process, the theory has been
intensely and broadly criticized as unbounded and without meaningful
conceptual limiting principles. More deeply, the doctrine of substantive due
process has been criticized as presenting an irresistible temptation to
unelected and politically unaccountable federal judges to override laws duly
enacted by the political branches of government, and to replace them with
their own naked policy preferences under the false pretense of interpreting
the Constitution.

Despite these concerns, Justice Blackmun and his six colleagues on the
Court declared that the right to privacy was implicit in the Fourteenth
Amendment and included those personal rights that are “fundamental” and
“implicit in the concept of ordered liberty.”16 Citing prior Supreme Court
precedents relating to marriage, procreation, contraception, family
relationships, child-rearing, and education, Justice Blackmun sought to
articulate the contours of the “zone of privacy” shielded from state action.
He then concluded, without a great deal of argument, that the choice for
abortion should be situated within this classification of fundamental privacy
rights.17

“Fundamental Right”
What is a “fundamental right”? Once a right is declared “fundamental,” it
enjoys the strongest protection against state action available in American
constitutional law. The mechanism of this protection is the “standard of
review” applied by federal courts in evaluating state-imposed limitations on
rights deemed fundamental. To survive a challenge to restrictions of
fundamental rights, a state bears the burden of proving to the court that the
constraint serves a “compelling interest”—a term of art denoting the most
significant degree of concern a state can invoke. If the state satisfies this
requirement, it must then prove to the court that the means chosen to
vindicate this compelling interest are the “least restrictive” possible.

This standard of review is referred to as “strict scrutiny,” and in
practice nearly always results in the nullification of the challenged law by
the court. All constitutional rights deemed “fundamental” enjoy this
maximal protection by the federal courts. This is in contrast to rights
designated as mere “liberty interests.” Such liberty interests still receive
protection of the courts, but not nearly to the same degree as fundamental
rights. Instead of “strict scrutiny,” courts review state restrictions on liberty
interests under the highly deferential “rational basis” standard of evaluation.
Under “rational basis,” courts simply ask states to justify their restrictive
laws by citing a “legitimate” state interest (as opposed to a “compelling”
interest), pursued by means that are “rationally related” to that end (as
opposed to “least restrictive”). In practice, states almost always prevail
under rational basis review. Therefore, by declaring the right to abortion to
be “fundamental” (under the aegis of the unenumerated right to privacy),
the Court signaled that states would have virtually no latitude to restrict it.

It is worth pausing a moment to reflect on this. Commentators of all
ideological stripes were struck by the extension of the right to privacy to the
context of abortion. For one thing (as liberal icon Judge Henry Friendly of
the U.S. Court of Appeals for the Second Circuit had observed in a pre-Roe
opinion that was rendered moot and never published because of legislative
action by the state of New York), the practice of abortion is not “private” in
the same sense as marital intimacy, procreation, or child-rearing.18 It
involves multiple third parties—doctors, nurses, health care technicians,
and staff of what are usually for-profit outpatient clinics. Moreover,
abortion is distinguishable from the actions at the heart of the prior privacy
precedents (including Griswold) in that it involves a process aimed at the
intentional destruction of a developing human life in utero. This is,
obviously, the primary source of controversy surrounding the practice, and
the chief animating rationale for state laws restricting it.

Other commentators were (and remain) taken aback by the Court’s
discovering a right to abortion in the Fourteenth Amendment—a provision
of the Constitution ratified in 1868 in the wake of the Civil War aimed at
remediating and responding to the grave and shameful injustice of chattel
slavery. Neither the framers of the Fourteenth Amendment, the states that

ratified it, nor the American public more generally understood or intended
for the Amendment to legalize abortion. To the contrary, in the year the
Fourteenth Amendment was ratified, thirty of thirty-seven states explicitly
criminalized abortion.19 In fact, four months after ratifying the Fourteenth
Amendment, the Ohio state legislature passed a law criminalizing abortion
from the moment of conception. The rationale for the law, as reflected in a
report of the Ohio Senate Committee on Criminal Abortion, was to prevent
the intentional killing of the unborn “at any stage of its existence,” which it
equated with “child-murder.”20 There was no indication that the Ohio
legislature (nor any state legislature) believed that this law or those like it
conflicted with the Fourteenth Amendment’s promises of due process or
equal protection under law.

Thus, to find a fundamental right to abortion under the auspices of
interpreting the Fourteenth Amendment as Justice Blackmun did, it is
necessary to deploy a much more expansive, dynamic, and creative method
of constitutional construction than the more conventional and limited focus
on text, history, and American legal tradition. Many commentators
(including those who support abortion rights) have expressed the view that
Justice Blackmun’s opinion did not do the necessary work to identify,
explain, or defend such an alternative method of interpretation. This failure
of explanation and argument was particularly concerning given the dramatic
(one might even say radical, given the baselines of the day) change in the
law and culture that the decision would abruptly compel. The controversy
regarding Blackmun’s opinion was further aggravated by the fact that none
of his sociological, medical, or historical assertions were tested for accuracy
or reliability by the adversarial process afforded by the usual trial-level
evidentiary hearing. Instead, his arguments relied exclusively on appellate
materials, such as amicus briefs and law review articles authored by
individuals associated with advocacy organizations, as well as his own
research.

CONFLICTING INTERESTS AND THE TRIMESTER FRAMEWORK

Be that as it may, Justice Blackmun and his six colleagues on the Court
declared that the right to privacy announced in Griswold was broad enough

to include a right to abortion. To ground the fundamental right, he
specifically enumerated the burdens on women imposed by laws restricting
abortion.21 He first noted the possibility of medical harms associated with
an unwanted pregnancy. But his list of burdens quickly moved on from the
physical and psychic consequences of unwanted pregnancy, and expanded
to the harms to women (and others) caused by unwanted parenthood
following the child’s birth, including “a distressful life and future,” mental
and physical health “taxed by childcare,” “distress for all concerned
associated with the unwanted child,” the problem of bringing an additional
child into a family unable or unwilling to care for it, and the “stigma of
unwed motherhood.”22

Having identified the protected interests grounded in a woman’s
fundamental right of “personal privacy,” Justice Blackmun next sought to
articulate the countervailing concerns of the state in restricting the practice.
In this way, Blackmun framed the question before the Court as a conflict
between the woman and the state’s competing interests in “health and
potential life.”23 Texas bore the burden of proving that the challenged
abortion law was justified by a “compelling interest,” and that the
regulation at issue constituted the least restrictive means to this end.24 This
was the framework for “strict scrutiny”—the most exacting level of judicial
review of state action, reserved for assessing limits on constitutional rights
deemed by the Court to be “fundamental.”

Texas’s primary argument was that the protection of prenatal human
beings from lethal violence was a compelling interest sufficient to justify
restricting abortion in all cases save for where the mother’s life was
endangered. Texas (and other amici) argued further that prenatal human
beings were “persons” under the Fourteenth Amendment, thus enjoying the
protections of due process and equal protection of the law. In a brief
passage, Justice Blackmun dismissed this constitutional argument on the
grounds that while “person” was not defined by the Constitution, in the
handful of instances in which the term is used, it applies only postnatally.
He thus concluded that the term “person” in the Fourteenth Amendment
excludes human organisms in utero.25

Moving from the constitutional to the more general notion of
“personhood” as a legal concept, Justice Blackmun turned to the state’s
general interest in regulating abortion for the “health of the mother or that
of potential human life.”26 Regarding Texas’s interest in protecting prenatal
human life, Justice Blackmun observed that there is no consensus on the
moral status of the unborn, and that the Court would not seek to adjudicate
this question.27 After offering a very brief historical narrative on the debate
over “when life begins” and the moral and legal status of prenatal human
life (none of which was presented or subject to evaluation at the trial
phase), Justice Blackmun concluded that Texas was not entitled to embrace
“one theory of life,” and “override the rights of the pregnant woman that are
at stake.”28 Thus, the Court declared implicitly that the question of the
meaning and value of nascent human life was a matter for private judgment
and private ordering. In the Court’s judgment, the state’s interest in shaping
opinions about the meaning and value of human life in its earliest stages
paled in contrast to a woman’s interests in avoiding the burdens of an
unwanted pregnancy and parenthood. (This proposition would return in an
even more potent and explicit form nineteen years later in Planned
Parenthood v. Casey.)

Justice Blackmun’s evaluation of the state’s interest in preserving a
woman’s health (as weighed against her interest in choosing abortion) took
a somewhat different turn. Here, Justice Blackmun concluded that the
state’s interest might become compelling at the stage of pregnancy where
the abortion procedure would be equally or more dangerous for the woman
than continuing the pregnancy to term. Justice Blackmun asserted that it
was a matter of proven medical fact that abortions in the first trimester are
generally safer than carrying a pregnancy to term. Accordingly, he
concluded that the state does not have a compelling interest in regulating
abortion for the sake of women’s health during these first twelve weeks.
Thus, the first holding of Roe v. Wade is that the state may not limit the
right to abortion for any reason during the first trimester.29

The Court held that in the second trimester of pregnancy the state’s
interest in regulating abortion for the sake of women’s health becomes
compelling, and therefore laws that are reasonably related to this goal are

permissible. But this is the only legitimate grounds for abortion laws at this
stage of pregnancy. No other state interest (including its interest in
preserving prenatal life) is sufficiently weighty to warrant restricting access
to abortion. Therefore, the Court held that the state may not limit abortion
in the second trimester of pregnancy except for purposes of protecting
women’s health.30

As for the third trimester of pregnancy, the Court returned to the
question of the state’s interest in unborn life (referred to throughout the
opinion as “potential life”). Justice Blackmun associated this stage of
pregnancy with “viability,” namely, the presumed capability of the child in
utero for “meaningful life outside the mother’s womb.”31 The Court held
that at this gestational stage the state was free to ban abortion, so long as
any restriction made exceptions when necessary to save a woman’s life or
to preserve her health.32

Thus emerged the famous and controversial trimester framework of
Roe v. Wade. Interestingly, at no point in the briefs, oral arguments, or
proceedings in the lower court had any party argued for a shifting legal
standard according to stage of pregnancy. This was entirely an invention of
Justice Blackmun as he drafted the opinion. The elaborate and detailed
nature of the legal standard has struck many commentators as statute-like,
amplifying the critique that the Court was acting more as a political branch
of government, straying far from its limited role of judicial interpretation. It
struck many observers as implausible that the Fourteenth Amendment
required not just a right to abortion but prescribed this complex tripartite
regulatory apparatus. Others have noted that Justice Blackmun’s empirical
claim about the relative risks of abortion and pregnancy that became an
essential premise of the Court’s reasoning was never presented, discussed,
or evaluated as scientific evidence at trial. Still others on both sides of the
abortion conflict have taken issue with the notion that either a woman’s
fundamental rights or the right to life of the unborn (the same organism
throughout gestational development) should fluctuate with something as
contingent and unstable as the concept of “viability”—which is a standard
that changes with access to technology, skill of medical care, and even the
race and sex of the fetus.

In sum, Roe v. Wade held that the Due Process Clause of the Fourteenth
Amendment implied a fundamental right to privacy that includes the
freedom of a woman to seek an abortion. Any proposed state restriction
must satisfy “strict scrutiny,” meaning that the law must serve a
“compelling” interest, pursuant to the “least restrictive means.” In the first
trimester of pregnancy, there is no such state interest. In the second
trimester of pregnancy, the only compelling state interest is the preservation
of a pregnant woman’s health. In the third trimester, the state’s interest in
prenatal life is sufficiently compelling that abortion can be proscribed, so
long as the law provided an exception to preserve the life or health of the
mother.

Doe v. Bolton and the Meaning of “Health”
Other than articulating the harms to women’s well-being imposed by
abortion restrictions, the Court in Roe did not specify what constitutes
“health,” nor what types of health interests would be sufficiently weighty to
warrant an exception to a general law banning abortion in the third
trimester. For this, it is necessary to consider the most important abortion
case that most people have never heard of, decided on the same day as Roe.
That case was Doe v. Bolton.33

Doe involved a challenge to a suite of abortion regulations in Georgia.
The state law banned abortion except by licensed physicians whose “best
clinical judgment” was that the pregnancy threatened the life or health of
the mother, the “fetus would likely be born with a serious defect,” or that
the pregnancy resulted from rape.34 Moreover, the challenged regulatory
scheme required that abortions be performed only in accredited hospitals,
that the procedure be approved by a hospital staff abortion committee, and
that the abortion provider’s judgment be confirmed by two independent
physicians. Finally, the law limited abortions to Georgia residents.35

The Court struck the following down as unconstitutional: the hospital
requirement (while noting that this rule might be permissible as applied to
the second and third trimesters of pregnancy), the abortion committee
approval provision, the two-physician confirmation rule, and the residency

clause. The Court declared all of these provisions to be unduly restrictive of
the fundamental right to abortion.36

For this discussion, the most important part of the Doe opinion is the
meaning and legitimacy of the term “best medical judgment” as provided in
the statute. The plaintiffs stated that the requirement for doctors to exercise
judgment when evaluating the risks associated with carrying the pregnancy
to term was unconstitutionally vague.37 That is, they claimed that the law
did not set forth its requirements with sufficient clarity and precision to put
physicians on notice of what conduct was criminally prohibited, or to cabin
the discretion of prosecutors. The Court concluded that the phrase “best
clinical judgment” was clear enough for constitutional standards of due
process. To explain, the Court elaborated on the factors relevant to health,
to be weighed and considered by the physician in determining if the
abortion was warranted. Such factors included: “physical, emotional,
psychological, familial, and the woman’s age.” All of these factors,
according to the Court, related to the definition of “health.”38

In this way, the Court made clear what had only been implied in Roe v.
Wade, namely, that “health” is a capacious concept that incorporates all
aspects of well-being. It is not limited to physical or even psychological
health. It likewise relates to “familial” health. Perhaps this is what Justice
Blackmun had in mind in Roe, when he declared that the fundamental right
to privacy protects women from abortion limits that impose the burdens of
unchosen parenthood, such as a distressful life and future “for all
concerned” caused by the need to rear an unwanted child. By defining the
meaning of health in such a broad fashion, the Court in Doe v. Bolton
appeared to make it clear that the “health exception” that Roe mandated for
all restrictions on abortion (even post-viability) could be invoked by the
abortion provider in service of nearly any aspect of his patient’s well-being.
Critics of the opinion worried that this expansive notion of “health” could
allow any abortion provider to circumvent any limit on abortion, simply by
invoking such broadly framed interests (including “familial” concerns) to
justify the procedure. (This worry would resurface in dramatic fashion
twenty-seven years later in Stenberg v. Carhart.)

Unanswered Questions from Roe and Doe

Both the Court’s opinions in Roe and Doe leave essential questions
unaddressed, including who or what is destroyed in an abortion? Why
should the stage of development of the human organism in utero matter to
the scope of a woman’s right to bodily autonomy, self-determination, and
privacy? Why should the state be involved in this decision at all? In short,
what is the Court’s underlying normative theory justifying its decision? To
explore these questions and consider answers, it is useful to turn briefly to
highly influential contemporaneous philosophical work advocating for
abortion rights. Without invoking this body of scholarship by name, the Roe
and Doe opinions appear to echo the principles and arguments advanced
therein.

In the early 1970s several prominent philosophy journals dedicated
space to the discussion of the right to abortion. The publication of these
volumes marked the birth of “public philosophy” as a field of inquiry and
influence. In the articles therein, two primary philosophical justifications
for the right to abortion emerged that persist to this day as the fundamental
anchors of pro-choice public advocacy, deployed both singly and in
combination. First, philosophers (and advocates) ground the right to
abortion in the freedom to reject the unchosen and unwanted bodily burdens
of pregnancy. This has been called the “bodily dependence” argument for
abortion rights. The second philosophical justification for abortion rights—
termed the “personhood” argument—argues that the prenatal human
organism does not merit the legal protections against private lethal violence
owed to post-natal human beings until he or she satisfies various
predetermined criteria. Different criteria for personhood have been
proposed, including cognition, self-awareness, the capacity to have desires,
the development of a mature and familiar human morphology, and suchlike.
Until it attains the moral status of “person,” the interests of the fetus in
avoiding destruction by abortion cannot override the right of the pregnant
woman to choose the procedure. As will become evident in the discussion
that follows, the bodily dependence and personhood arguments for abortion,
while technically distinct, tend to depend on and intersect with one another,
at least implicitly.

The most famous philosophical defense of the “bodily dependence”
argument was advanced by Judith Jarvis Thomson in the first volume of the
journal Philosophy and Public Affairs (Autumn 1971).39 Her article, “A
Defense of Abortion,” is one of the most widely cited and republished
pieces in all of academic philosophy. In it, she purports to assume for the
sake of argument that the fetus is a person from the moment of conception,
and proceeds to argue for the morality (and legality) of abortion
nevertheless. (Thomson herself does not regard the fetus to be a person
early in development, but suggests, without elaborating, that “we should
probably have to agree that the fetus becomes a person well before birth.”40)
Thomson makes her argument by way of a series of colorful analogies
involving the bodily impositions of one person upon another, in an effort to
demonstrate that it is no injustice to reject such impositions, even when the
other person will die as a result. She proffers a hypothetical case in which a
woman is abducted by the “Society for Music Lovers,” who sedate her, and
surgically attach an unconscious famous violinist to her circulatory system.
She is thus conscripted into the medical care of the violinist, whose blood
her own kidneys will now clean for the nine months it takes for him to
recover. The Director of the Hospital advises her that he is sorry for this
imposition, but he cannot “unplug” her from the violinist, as this would
result in his certain death.

Thomson’s analogy is meant to appeal to the intuition that it is not
murder or the violation of the violinist’s right to life to disconnect from the
violinist, even though it is sure to cause his death. This lethal action is
justifiable because the violinist is not entitled to use the woman’s body to
survive without her consent: “[N]obody has any right to use your kidneys
unless you give him such a right.”41

Thomson deploys other similar analogies in an effort to justify
rejection of nonconsensual bodily impositions including a woman trapped
in a small house with a baby who is rapidly growing to fill the entirety of
the home’s interior, and two men fighting over a coat (belonging to one of
them) to avoid freezing to death.

Of course, these analogies appear only to relate to the circumstances of
forced impregnation, such as through rape. Thomson thus expands her

argument to the context of unwanted pregnancy arising from consensual sex
with further analogies. These involve the invasion of property interests by
individuals despite the owner’s best efforts to prevent them. A burglar who
comes into one’s home through an open window.42 “People seeds” that take
root inside one’s home despite efforts by the owner to prevent this by
installing fine mesh screens.43 In each case, Thomson seeks to elicit the
intuition that one is justified in evicting the unwanted intruder or parasite,
even if their presence follows foreseeably from some consensual action,
like leaving a window open or using potentially defective screens. These
analogies are meant to persuade the reader that a woman is similarly
justified to evict the unwanted fetus conceived due to contraceptive failure
or unprotected sex, even if such actions cause its death.

As a concise summary of her core proposition, Thomson states: “I have
been arguing that no person is morally required to make large sacrifices to
sustain the life of another who has not the right to demand them, and this
even where the sacrifices do not include life itself.”44

She dismisses the notion that one’s child has such a right to sacrificial
care and support merely by virtue of her relationship to her mother or
father. She elaborates that the only possible grounds for such an entitlement
is the consent of the mother, which cannot be assumed simply by virtue of
the relationship of parenthood. If parents “have taken all reasonable
precautions against having a child, they do not simply by virtue of their
biological relationship to the child who comes into existence have a special
responsibility for it. They may wish to assume responsibility for it, or they
may not wish to. And I am suggesting that if assuming responsibility for it
would require large sacrifices, then they may refuse.”45

Thomson concludes her essay with two clarifications. First, she
suggests that some abortions later in pregnancy may not be justifiable, if
pursued for what she regards to be frivolous reasons (she gives the example
of an abortion in the seventh month of pregnancy for the sake of a
vacation).46 Second, she distinguishes the right to abortion from the right to
ensure the demise of one’s prenatal offspring. If it is possible to terminate a
pregnancy without killing the fetus, she suggests that one should opt for this
pathway.47

At roughly the same time that Thomson published her defense of
abortion based on a woman’s freedom to reject the fetus in utero, two other
philosophers published articles defending abortion rights on “personhood”
grounds. Michael Tooley published “Abortion and Infanticide” one year
after Thomson’s piece in the second volume of the same journal,
Philosophy and Public Affairs (Autumn 1972).48 A few months later, Mary
Anne Warren published “On the Moral and Legal Status of Abortion” in
The Monist (January 1973).49 Whereas Thomson argued that abortion is a
justifiable response to evict an unwanted bodily intruder (even where such
eviction will result in her demise), Tooley and Warren both argue that the
prenatal human organism is not a “person,” and thus its interests are
subordinate to those of a woman seeking an abortion.

Tooley asserted that a living being must satisfy specific criteria to be
deemed a “person,” with the attendant rights and interests, including
especially the right to life. He begins with the proposition that a “right” is a
claim “about the prima facie obligations of other individuals to act, or
refrain from acting.”50 But the presence of a right is conditional on the
desire of the bearer of that right. Tooley puts it this way: “ ‘A has a right to
X’ is roughly synonymous with ‘If A desires X, then others are under a
prima facie obligation to refrain from actions that would deprive him of it.’
”51 Accordingly, there can be no right to life without someone capable of
having the desire for life. To have such a desire, a being must “possess the
concept of self as a continuing subject of experiences, and … believe that it
is itself such an entity.”52 In other words, only those human beings who
have self-awareness and desires have a right to life. Until and unless a
human being’s brain is sufficiently developed to support this form of
cognition, she does not have a right to life. This, according to Tooley, is the
case for the human organism at early stages of development, both in utero
and even ex utero. That is, Tooley’s definition of “person” excludes the
preborn, the newly born, as well as human beings who irreversibly lose
their capacity for self-awareness and desire formation. In other words, as
the title of his article suggests, Tooley’s principles lead to the acceptance of
infanticide. Merely having the potential for self-awareness is not sufficient
under Tooley’s approach to qualify as a “person.” (Interestingly, Tooley

criticizes Thomson both for suggesting that the fetus becomes a person at
some point before birth and for suggesting that bodily dependence alone
can warrant the right to abortion of a being that qualifies as a person.53)

In “On the Moral and Legal Status of Abortion,” Mary Anne Warren
undertakes a similar project. She begins with the observation that it is not
possible to produce a persuasive defense of the right to abortion “without
showing that a fetus is not a human being, in the morally relevant sense of
that term.”54 Contra Thomson, Warren believes that if one grants the full
moral personhood of the unborn child, it is not possible to establish
conclusively that abortion is morally permissible. Like Tooley, she rejects
Thomson’s assertion that one has the moral right to expel an innocent
person from her property (or body) when it will inexorably lead to his
death. This echoes Justice Blackmun’s statement in Roe that “if this
suggestion of personhood [within the meaning of the 14th Amendment]
could be established, the appellants’ case, of course, collapses, for the fetus’
right to life would then be guaranteed specifically by the Amendment.”55

Warren asserts that Thomson’s analogy only holds for cases of coerced
pregnancy such as rape.56 Nevertheless, Warren believes that maximal
abortion rights are justified morally and legally because the fetus is not a
person at all.

In order to make the case for abortion rights, Warren proposes that even
though the fetus is, biologically speaking, a living member of the human
species, it is not a “person” entitled to full and equal moral rights. In her
view, “it is personhood, not genetic humanity” that defines the boundaries
of the moral and legal community.57 The balance of the article is dedicated
to demonstrating that “a fetus is not a person, hence not the sort of entity to
which it is proper to ascribe full moral rights.”58

Warren believes that the criteria for personhood and the grounds for
moral rights are “perfectly obvious,” and the article represents her effort to
articulate such criteria in service of a defense of the moral and legal
permissibility of abortion.59

Warren frames the question thus: “What sort of entity, exactly, has the
inalienable right to life, liberty and the pursuit of happiness?” She then
seeks to develop a set of criteria and a rough sense of how many must be

satisfied for a being to qualify as a “person.” One who satisfies the requisite
number of criteria is a person, with human rights.

The five traits “most central to the concept of personhood” are: (1)
consciousness and the capacity to feel pain; (2) reasoning (“the developed
capacity to solve new and relatively complex problems”); (3) “self-
motivated activity”; (4) the ability to communicate information “on
indefinitely many possible topics”; and (5) “the presence of self-concepts,
and self-awareness, either individual or racial, or both.”60

Warren then seeks to discern how many of these elements must be
present for a human being to warrant the status of personhood. She suggests
that criteria (1) and (2) alone might be sufficient, and “quite probably (1)–
(3)” if “activity” includes reasoning.61 But, most importantly, she posits that
a human being that has none of these traits does not have the status of
personhood. Since the unborn child lacks all five traits, it is clear to Warren
that human beings at this stage of development cannot reasonably be
considered persons.

Warren thus observes that it is both overbroad and underinclusive to
use the classification “human being” as a proxy for personhood. By her
standard, she suggests that there are multiple types of human beings who
are not persons, including men and women who have permanently lost their
capacity for consciousness (no longer persons), “defective human beings”
who never had the capacity for consciousness (these never were and never
will be persons), and, of course, prenatal human beings in utero (not yet
persons).62 Moreover, in the future it may be discovered that intelligent
alien life forms and perhaps even self-aware robots or computers possess a
sufficient number of her criteria to count as persons.

Warren furthermore rejects the notion that as “potential persons,” the
unborn possess a right to life sufficient to outweigh a woman’s right to
abortion, since she is an actual person. Thus, Warren concludes that any
restriction on abortion (absent “any overwhelming social need for every
possible child”) violates a woman’s fundamental moral and constitutional
rights.63

Unlike Tooley, however, Warren does not appear to be willing to
embrace fully the practice of infanticide, even though her definition of

personhood would rule out not only the unborn, but also newborns (as well
as cognitively disabled children, adolescents, and adults). She resists
endorsing infanticide in part because she believes that society appears to
value the life of infants, and at the moment “can afford to provide care for
infants which are unwanted or which have special needs.”64 Moreover, “the
needless destruction of a viable infant inevitably deprives some person or
persons of a source of great pleasure and satisfaction, perhaps severely
impoverishing their lives.”65 She later points out, however, that she does not
regard the killing of newborns as murder, because of their sub-personal
status.

She likewise rejects restrictions on late term abortions, because the
prenatal human beings involved may pose a risk to the mother’s life or
health. Warren does not address those cases where late term fetuses do not
pose such a threat. But in any event, it is interesting to note that at the
extremes of her argument, to avoid fully embracing infanticide, she must
combine her argument from personhood with a discussion of the burdens of
bodily dependence.

Thomson, Tooley, and Warren represent the philosophical defenses of
abortion rights nested in arguments from bodily dependence and
personhood. While there have been many other philosophers (such as David
Boonin, Peter Singer, Alberto Giubilini, and Francesca Minerva) who have
proposed variants and refinements of these arguments, both alone and in
combination, the claims are quite similar: laws restricting abortion are
unjustifiable because they improperly interfere with a woman’s right to free
herself from the burdens of unwanted pregnancy, and / or the fetus is not a
being with the right to life sufficient to override the wishes of a woman
seeking an abortion.66

While these philosophical principles are not outright mentioned in
Justice Blackmun’s opinions in Roe and Doe, they reflect his implicit
reasoning. To justify the right to abortion (grounded in privacy), Justice
Blackmun invokes the burdens of unwanted pregnancy. He includes, of
course, the physical and emotional consequences of pregnancy, but seems
to go even further than Thomson by invoking the burdens of unwanted

parenthood—not just on the mother, but on the family and the community
into which the unwanted child comes.

According to Roe and Doe, the fundamental right to abortion emerges
from the unique bodily encumbrance that pregnancy represents, along with
the impositions of postnatal childcare. Justice Blackmun does not raise the
possibility that the woman might be obliged to endure the burdens of
unwanted pregnancy and parenthood by virtue of her relationship of
biological parenthood or the fact she is the only one capable of sustaining
the life of the fetus, at least until viability. In all these ways, Blackmun’s
opinion follows implicitly the logic of Thomson’s bodily dependence
argument for abortion rights.

Blackmun also seems to have a personhood argument for abortion in
mind as well. While he claims to be neutral and agnostic on the moral status
of the fetus, he abandons this posture when he seeks to frame the state’s
interests that conflict with those of the woman seeking an abortion. His
analysis of what the word “person” means as applied to the Due Process
(and Equal Protection) clauses of the Fourteenth Amendment or in other
areas of American law is cursory and truncated. He does not remand the
case for factfinding on this question. He thus concludes that the dispute is
between one who is without doubt both a moral and constitutional person
(the pregnant woman) and the state’s interest in protecting a constitutional
nonperson, who is defined throughout much of the opinion as “potential
life.” This “potential life” has no meaningful interests that counterbalance
those of the mother seeking an abortion until the third trimester of
pregnancy. And even then, the mother’s well-being, broadly defined to
include interests such as “familial health” and the future burdens of rearing
an unwanted child override any claim the fetus has to a right to life.

Most importantly, despite claims to neutrality, Justice Blackmun’s
opinion implicitly finds the human fetus to be sub-personal, when he
declares its moral status to be strictly a matter for private decision-making.
The Court in Roe explicitly forbade Texas from “adopting one theory of
life” in its laws on abortion.67 By contrast, after a human being is born,
private individuals in Texas are not permitted to decide by their own lights
whether she is a person under the state’s criminal statutes. One of the

hallmarks of personhood is that moral status and basic legal protections are
not contingent upon the private opinions of others. By denying the state the
capacity to extend such protected status to prenatal human beings, the Court
effectively placed them outside the boundaries of the community of
persons. This result closely tracks the reasoning of Tooley and Warren’s
defense of abortion in the name of a limited conception of “personhood.”

Application of Roe and Doe
In the nearly two decades following Roe and Doe, the Court vigorously
defended the fundamental right to abortion, and wielded the “strict
scrutiny” standard of review to nullify a wide array of state laws meant to
regulate and curtail the practice. From 1973 until 1992, under the auspices
of applying Roe and Doe, the Court invalidated laws requiring second-
trimester abortions to be performed only in hospitals, informed consent
requirements (including a regulation requiring that only doctors convey
such information), twenty-four hour waiting periods between informed
consent and the abortion procedure itself, certain recordkeeping
requirements regarding patient demographics and abortion procedures, and
even parental notification laws. The Court also struck down as
unconstitutional laws that sought to govern the determination of viability,
and laws that required the use of an abortion technique most likely to
preserve the life of the post-viable fetus. The Court nullified a law requiring
the humane and sanitary disposition of fetal remains. The Court’s persistent
interventions invalidating state laws on abortion prompted Justice White in
a 1986 dissent to complain that the Court was engaged in the “unrestrained
imposition of its own extraconstitutional value preferences.”68 Few, if any,
constraints on abortion rights were tolerated by the Court during this period.

The Anthropology of Roe and Doe
Before proceeding to consider the additional Supreme Court precedents that
combine to constitute the law of abortion in America, we must discuss the
anthropological premises that ground Roe and Doe, as written and as
applied. The image of human identity and flourishing that emerges from the
Court’s reasoning (and the philosophical discourse it reflects) is that of the
atomized individual, defined by the cognitive capacity for choice, striving

to pursue, express, and live according to those original truths discovered
from self-interrogation, unbound by unchosen obligations and relationships,
natural limits, and the concept of natural ends. In short, the law’s vision of
the person undergirding Roe and Doe is that of expressive individualism.

We see this in the language about the source and substance of the right
to abortion, the nature of prenatal human life, and the framing (and
resolution) of the problem of unwanted pregnancy and parenthood. The
overarching frame for these opinions is privacy—a good associated with
solitude and separation, often described as a “right to be left alone.” In this
case, privacy is a value that extends to the right to shed unwanted burdens
—to reject unchosen obligations to others, including those with whom one
stands in the biological relation of parent. The burdens cited by Justice
Blackmun go beyond the physical and psychological impositions of
unwanted pregnancy and extend to the encumbrances of unwanted
parenthood. In fact, the undeniable weight of these burdens is what
convinces Justice Blackmun that a pregnant woman must have the freedom
—the fundamental right—to seek relief through abortion, without serious
constraints from the state.

Just as in the anthropology of expressive individualism, in Roe and
Doe, there is no natural relationship, no claim arising from the maternal-
fetal connection or any plea of kinship that can impose an obligation on the
woman to carry her in utero offspring to term. For both Blackmun and
Thomson, the fetus has no enforceable demands on her mother for
continued life support. Rather, the fetus is an intruding stranger with no
claims of sonship or daughterhood. It is an abstraction; merely “potential
life.” The maternal-fetal relationship instead is defined by will and choice,
based on consent rather than unchosen duty. This is the case even after
viability, when an abortion can be performed in the name of health, broadly
understood to embrace all aspects of well-being, including “familial”
concerns (Doe).

Expressive individualism is also evident as an anthropological
grounding in Blackmun’s discussion of prenatal life and personhood, which
reflects, at least implicitly, the reasoning of Tooley and Warren. In Roe, the

moral status of the unborn must remain a matter of private deliberation and
judgment, according to one’s own subjective values and beliefs.

By prohibiting the state from extending the protections of personhood
to the unborn and declaring the moral status of the fetus to be a question
proper only to private reflection, Justice Blackmun implicitly decided the
matter of prenatal personhood in the negative. If the state cannot protect
unborn children as persons, and their moral status is left up to each
individual to decide, then it follows inexorably that they are not persons in
the eyes of the law.

Blackmun never explains why Texas is forbidden from treating the
matter of abortion as a highly complex, even sui generis case involving a
parent and child whose interests apparently conflict. As noted above, even
though Blackmun’s explicit arguments sound in bodily dependence, he
seems to be relying on a normative theory to justify his refusal to recognize
the legal personhood of the fetus. (To be clear, the question of legal
personhood is distinct from the narrower question of the word “person” as
used in the Fourteenth Amendment.) The most prominent theories of
personhood of the day as applied to abortion were, as noted above, well
represented by the views of Tooley and Warren.

Tooley and Warren’s conceptions of personhood only include those
capable of flourishing as dictated by expressive individualism. They both
equate the person with the exercise of the will and include in the class of
persons only those with the active capacity for self-awareness, self-
motivation, and the generation and pursuit of desires. Tooley goes so far as
to say only those capable of desire and an awareness of the self as a
continuing subject of experiences are “persons” endowed with a right to
life. Similarly, Warren privileges self-consciousness, reason, and expression
as the sine qua non of personhood. In other words, only those with the
currently active capacity to interrogate their innermost selves to discover,
express, and pursue their originality are properly members of the
community of persons, with all the attendant basic legal protections and
moral concerns. Only those currently capable of thriving when viewed
through the lens of expressive individualism are persons. Those, like the
human fetus, without such capacities do not qualify as persons.

Finally, by framing the abortion dispute as essentially a clash of raw
interests between strangers—a person and nonperson—Justice Blackmun
embraces the narrative of expressive individualism: a universe of lonely
atomized wills each seeking their own self-invented destinies, encountering
other wills as transactional collaborators or adversaries to be overcome. For
Blackmun, the interests of the fetus do not even rise to the interests of a
person, but rather a sub-personal being whose interests must necessarily
give way when they conflict with those of a bona fide person. This clash of
interests bears little relation to the reality of human procreation and
pregnancy, in which the dramatis personae include a woman and her
biological offspring literally joined in body, one inside the other, utterly
dependent on the other, with lives integrated and intertwined to a degree
like no other human relationship. They are, biologically speaking, mother
and child.

They are not homeowner and burglar, host and parasite, or violinist and
unwilling conjoined kidney donor. This is not a dispute over private
property. Moreover, there is no mere “unplugging” to undo this relationship
—modern methods of abortion involve the direct killing and removal of the
fetus through highly invasive and violent means. Blackmun’s narrative of
conflict is simplistic, foreign, and forgetful of the body.

PLANNED PARENTHOOD V. CASEY: THE MODERN RULE

By 1992, the cultural and political movement to overturn Roe v. Wade and
restore meaningful protections for prenatal human life appeared to have
achieved some of its key political aspirations. Presidents Ronald Reagan
and George H. W. Bush had made multiple appointments to the Supreme
Court thought to be hostile to Roe, namely, Justices Antonin Scalia, Sandra
Day O’Connor, Anthony Kennedy, David Souter, and Clarence Thomas.
With the original dissenters in Roe, Chief Justice William Rehnquist and
Justice Byron White, still on the Court, observers believed that Roe would
be reversed. The opportunity appeared to present itself in 1989 with the
passage of the Pennsylvania Abortion Control Act, signed into law by
Governor Bob Casey, Sr., a prominent Democrat who was famously
opposed to abortion.69

The Pennsylvania law included measures regulating the manner in
which abortion was provided, some of which had been previously struck
down by the U.S. Supreme Court as unconstitutional, including a
mandatory informed consent provision, followed by a twenty-four-hour
waiting period, a parental consent requirement (with a judicial bypass
provision for exceptional cases), a spousal consent provision (with judicial
bypass), and certain reporting requirements for facilities that provide
abortions.70

On June 29, 1992, to the great surprise of many, the Court announced
its decision (decided by a margin of 5–4) reaffirming what it termed the
“essential holding of Roe” in a joint plurality opinion written by Justices
Kennedy, O’Connor, and Souter.71 The announcement shocked pro-life and
pro-choice communities alike, to the great despair of the former and to the
elated relief of the latter. But on reading the decision closely, it quickly
became clear to both sides that despite the opinion’s claim that it had
reaffirmed Roe, American abortion jurisprudence had been formally, if not
functionally, significantly altered.

The Court shifted the normative grounding for the right to abortion
from privacy to “liberty.”72 This change closely mirrored Justice Kennedy’s
strong libertarian judicial philosophy, and the passages of the plurality
opinion expounding on the good of liberty are commonly attributed to his
authorship. The opinion renewed a commitment to substantive due process,
noting that the procedural protections of the Fourteenth Amendment
preclude certain government actions “regardless of the fairness of the
procedures used to implement them.”73 The plurality sought to articulate a
zone of liberty into which the state may not intrude, including “a person’s
most basic decisions about family and parenthood, as well as bodily
integrity.”74 The Court framed the question before it as regarding the
freedom to make choices about the meaning and value of prenatal life,
procreation, parenting, social roles, and family. “The underlying
constitutional issue is whether the State can resolve these philosophic
questions in such a definitive way that a woman lacks all choice in the
matter, except perhaps in those rare circumstances in which a pregnancy is
itself a danger to her own life or health, or is the result of rape or incest.”75

The plurality answered this question in the negative, reaffirming Roe’s
holding that these are matters for private decision-making, and thus the
state cannot impose its own normative vision. In an oft-quoted passage, the
Court wrote:

These matters, involving the most intimate and personal choices a
person may make in a lifetime, choices central to personal dignity
and autonomy, are central to the liberty protected by the
Fourteenth Amendment. At the heart of liberty is the right to
define one’s own concept of existence, of meaning, of the
universe, and of the mystery of human life. Beliefs about these
matters could not define the attributes of personhood were they
formed under compulsion of the State.76

Despite the shift from privacy to liberty, the Court emphasized the
burdens that uniquely and exclusively fall on women facing unwanted
pregnancy as a core rationale for the right to abortion. And it expressed a
concern that by enforcing one conception of fetal personhood and
pregnancy the state was trading in an outmoded “vision of the woman’s
role” in society.77 In this way, the Court’s reasoning echoed the defense of
abortion as a mechanism of liberation for women from patriarchal
structures and enforced limits on sex-roles that inhibit their capacity to
define their futures by their own lights, on an equal footing with men. The
Court put it this way: “The destiny of the woman must be shaped to a large
extent on her own conception of her spiritual imperatives and her place in
society.”78

In addition to these normative justifications for reaffirming Roe, the
plurality opinion was quite candid in its opinion that there were additional
prudential reasons that convinced the Justices not to reverse the precedent
even if they would not have voted with the majority had they been on the
Court in 1973. First, the opinion invoked the doctrine of stare decisis, a
principle of judicial prudence in common law systems that invites (though
does not require) a court to consider the practical and social consequences
of reversing a prior precedent, even though it was wrongly decided in the

first instance.79 Second, the Court invoked the need to preserve its
reputation and legitimacy as grounds for sustaining Roe, lest they be seen as
capitulating to political pressure.80

In applying the principles of stare decisis, the Court concluded that the
rule announced in Roe had not proven to be unworkable, nor had it been
eroded by subsequent legal decisions, or undermined by new factual
developments. But the plurality asserted that overturning Roe would disrupt
reliance on abortion access as a guarantor of self-definition through sexual
choices and women’s equal participation in the economic and social life of
the nation. “[F]or two decades of economic and social developments,
people have organized intimate relationships and made choices that define
their views of themselves and their places in society, in reliance on the
availability of abortion in the event that contraception should fail.”81

For all the foregoing reasons, the plurality decided to reaffirm Roe’s
“core holding,” albeit rooted in the good of liberty—the freedom of a
woman to make decisions essential for self-definition and “to retain the
ultimate control over her destiny.”82 But when the plurality finally specified
what it meant by “essential holding,” it bore only a passing resemblance to
the rule announced in Roe.

First, in Casey the Court downgraded the right to abortion from
“fundamental” to a “protected liberty interest.”83 The plurality suggested
that Roe’s approach was too demanding and did not provide sufficient
latitude for states to express their strong respect for prenatal life (from the
moment of conception) and to seek to persuade women to choose childbirth
over abortion. Accordingly, the Court replaced the nearly insurmountable
“strict scrutiny” standard of review for state limits on abortion with a new,
seemingly more lenient “undue burden” standard.

Under the new “undue burden” standard, the state was not permitted to
adopt a measure “if its purpose or effect is to place a substantial obstacle in
the path of a woman seeking an abortion before the fetus attains viability.”84

The Court did not define “undue burden” with specificity but seemed to
suggest that measures would be invalidated that prevented a woman from
making the “ultimate decision to terminate her pregnancy before
viability.”85 However, legal measures designed to persuade a woman to

choose to carry her pregnancy to term, to convey medically accurate
information, or to otherwise signal the state’s profound interest in prenatal
human life would be permissible, even if they had the incidental effect of
making abortion more difficult or expensive to obtain. After viability, the
state could regulate or proscribe abortion, so long as such laws included an
exception for the preservation of the life or health of mother. By adopting
this pre- versus post-viability framework, the plurality opinion abandoned
another key aspect of Roe, namely, the trimester framework.

While the Court’s explanation of “undue burden” was not entirely
clear, it became slightly more so as the plurality opinion applied it to the
challenged Pennsylvania law. The Court affirmed the constitutionality of all
the legal provisions at issue, save one—spousal notification. But every
other aspect of the law was upheld, including several that had been struck
down in previous Supreme Court opinions as unconstitutional under Roe.
According to the plurality, neither the informed consent requirement, the
twenty-four-hour waiting period, the parental notification provision, nor the
reporting requirements constituted “undue burdens” to women seeking
abortions in Pennsylvania. The prior Supreme Court precedents that had
invalidated similar provisions in the past were thus overruled.

At first glance, it seemed that Casey had cleared the way for much
greater regulation of abortion prior to viability than had been possible under
Roe, and perhaps its proscription after viability. But on closer examination,
the Court had left unaltered an essential element of the previous regime of
abortion jurisprudence, namely, the broad scope of “health” to encompass
all aspects of well-being (including “familial” interests) as defined in Doe v.
Bolton. By extension, the “health exception” that Casey required as an
adjunct to any limit on abortion—including after viability—appeared to
remain so broad as to swallow any state rule, so long as the abortion
provider could warrant that some aspect of the woman’s well-being would
be advanced by the procedure.

ANTHROPOLOGY OF CASEY

As was the case in Roe, the underlying assumptions regarding human
identity and thriving that emerge from the plurality’s decision in Casey

reflect the anthropology of expressive individualism. This is evident in the
opinion’s framing of the legal conflict at issue and its treatment of the
state’s interest in prenatal life. But the influence of the anthropology of
expressive individualism is most striking in the plurality’s discussion of the
normative grounding of the right to abortion, including the ostensible goods
it secures and the harms it protects against.

Just as in Roe, the Casey plurality styles the legal question at issue as
involving a conflict of interests between atomized individuals—one being a
person and the other something less than a person. There is no serious
consideration of their integrated and intertwined bodies and futures. There
is no acknowledgement of their relationship—they are treated as strangers
rather than mother and offspring. The Court’s theory of “personhood”
remains mysterious, but it is essential to the opinion (as it was in Roe) that
the moral status of prenatal life remain strictly a matter of private judgment,
to be decided by each individual according to her own values and interests.
In other words, Casey forbids the state from offering the protections to the
fetus that are afforded to a legal person, whose moral status cannot be
relegated to the domain of private opinion. Whether the developing human
organism in utero is deemed to be a nonperson because of its bodily
dependence on the mother or because it fails to meet predetermined criteria
of active capacities remains unclear. In Casey, the Court opens the door to
more state protections for prenatal life after viability, justified by its
assertion that this is the point at which “the independent existence of the
second life can in reason and all fairness be the object of state protection
that now overrides the rights of the woman.”86 But it does not explain why
this developmental moment is significant, beyond suggesting without a
developed argument that it is a “workable” line and that “a woman who
fails to act before viability has consented to the State’s intervention on
behalf of the developing child.”87 But, again, given Casey’s retention of Doe
v. Bolton’s broad conception of “health,” and, by extension, the open-ended
“health exception” that must accompany any restriction on abortion, the
Court in Casey stops far short of declaring the viable unborn human being
to be a “person” with a right to life.

In these ways, Casey follows Roe’s implicit embrace of expressive
individualism. But it goes far beyond Roe in this regard when the opinion
discusses the justification for and the nature of the right to abortion. The
opinion is a paean to liberty of a very particular sort. It is the freedom of the
unencumbered atomized will—the self-originating source of valid claims—
to define and express its originality over and above outmoded social
conventions and to pursue a destiny of its own choosing. The right to
abortion springs from the freedom “to define one’s own concept of
existence, of meaning, of the universe, and of the mystery of human life.”88

The right to abortion frees a woman to make choices based on “her own
conception of her spiritual imperatives and her place in society,” and to
break away from outmoded and repressive norms regarding appropriate
social roles.89 It is the freedom to live authentically in a way that may be
transgressive of conventional mores. And the right to abortion guarantees
the continuing freedom for women to “organize intimate relationships and
ma[ke] choices that define their views of themselves and their places in
society” in the event that efforts at birth control fail.90 In this way, the right
to abortion serves as an indispensable mechanism to allow women to pursue
the same forms of sexual expression available to men, without being
unequally burdened in charting their own destinies socially and
economically. In short, the plurality in Casey defends the right to abortion
as derived from and in service of the liberty to pursue the aspirations of
expressive individualism.

This is likewise evident in what the Casey plurality does not discuss.
There is no serious discussion of the possible meaning of the singular
bodily integration and intertwining of mother and child presented in human
pregnancy. There is no exploration of the significance of the bonds of
kinship. There is no reflection on the fact that sexual intercourse is the
means by which a new human life comes into being—emerging already
embedded in a relationship with mother, father, and family. The Court does
not consider that the womb is the locus of this event and the first place of
belonging for the unborn child. There is no wrestling with the complexity
and risks of dividing the world of living human organisms into “persons”
who bear human rights and “nonpersons” who live at the sufferance of

others, based on their interests and desires. The opinion does not grapple
with the possibility that in the networks of uncalculated giving and graceful
receiving that are required to protect and promote the flourishing of a
community of embodied beings, the vulnerability and dependence of a
woman facing an unplanned pregnancy constitutes a summons for aid that
must be answered by all those able to render it. It is a world of strife and
conflict among atomized strangers, without unchosen obligations. It is a
place where “natural givens” are not used as an aid to interpret the world of
physical reality. The opinion makes no mention of the virtues of just
generosity, hospitality, misericordia, gratitude, solidarity, openness to the
unbidden, tolerance of imperfection, or friendship. The opinion does not
serve as an aid to the moral imagination; its reasoning and logic do not
reveal the hidden faces or voices of others who have claims on us, to whom
we owe an obligation of care in proportion to their needs, regardless of how
it might benefit us in return. The opinion is, as evidenced by the foregoing,
forgetful of the body.

The foregoing analysis of American abortion jurisprudence reveals the
anthropology of expressive individualism at work. It animates and
undergirds a legal framework that reflects a fatally partial and limited vision
of human identity and flourishing. As a result, the law is not responsive to
the complexity of embodied life in its fullness, and leaves both mother and
child unprotected and exposed. But before exploring this notion further, it is
important to complete the picture of American abortion jurisprudence,
which requires a brief discussion of three more judicial precedents that
comprise the current law of abortion in the United States.

STENBERG V. CARHART (CARHART I) AND GONZALES V. CARHART (CARHART II):
THE PARTIAL BIRTH ABORTION CASES

STENBERG V. CARHART (CARHART I)

A short article by Dr. Martin Haskell entitled “Second Trimester D&X, 20
Weeks and Beyond,” published in the proceedings of a 1992 conference of
the National Abortion Federation, set off a fifteen-year firestorm of
controversy leading to nearly thirty state statutes, federal legislation
(including multiple presidential vetoes and attempted Senate overrides) and

two Supreme Court decisions.91 In this article, Haskell described, in a step-
by-step manner, a method of abortion that many found shocking and
gruesome. The procedure involves the intentional “delivery” (Haskell’s
words) of much of the fetal body—trunk and extremities—feet first into the
vagina.92 With the fetal head in the cervix, the abortion provider pierces the
skull with forceps, suctions out the skull contents, crushes the head, and the
removes the fetal remains intact. Haskell noted that he “routinely performed
this procedure on all patients 20 through 24 weeks” of gestation.93 Because
the procedure involves a process much akin to a live birth delivery and may
even involve some of the lower extremities of the living fetus becoming
visible outside of the mother’s body, opponents of the procedure describe it
as a “partial birth abortion.”

The response? As one could expect, much of the American public
reacted in horror, including many elected officials who self-identified as
pro-choice. Senator Daniel Patrick Moynihan (D-NY), himself a longtime
abortion rights supporter, famously said in response to the procedure, “It is
as close to infanticide as anything I have come upon in our judiciary.”94

Public debate ensued, with dramatic moments that included Ron
Fitzsimmons, Executive Director of the National Coalition of Abortion
Providers, admitting to an American Medical News reporter that he had
“lied through [his] teeth” on national television in a previous interview
when he asserted that such procedures were rare and only used to preserve
women’s health.95 To the contrary, he estimated that the procedure was
performed 3,000–5,000 times annually on “a healthy mother with a healthy
fetus that is 20 weeks or more along.”96

Efforts at legislation quickly followed. In the 1990s, the U.S. Congress
passed bans on the procedure on more than one occasion, but President
Clinton vetoed each effort. Nearly thirty state legislatures passed laws
banning intact dilation and extraction. It was in response to these measures
that the dispute moved into the United States courts.

The battle to ban “partial birth abortions” at the state level culminated
in 2000 with the U.S. Supreme Court decision Stenberg v. Carhart (Carhart
I), which focused on a Nebraska law that mirrored those in dozens of other
states.97

In a 5–4 decision, the Supreme Court struck down all of the challenged
laws on the grounds that they were unconstitutionally vague in describing
the prohibited procedure, and because they did not include a “health
exception,” allowing an abortion provider discretionary judgment to
perform this form of abortion.98 State legislatures had declined to include
such an exception because they maintained that there were no known actual
cases involving women with conditions that required this procedure to
preserve their physical health or life. (This argument was echoed in a 1997
letter from the American Medical Association to Congress in support of the
federal ban.99) Moreover, they worried that given the capacious nature of
“health” as defined by Doe v. Bolton, inclusion of a health exception would
be tantamount to providing what some referred to as an “abortionist’s
veto.”100 For support, they cited the public statement of late term abortion
practitioner Warren Hern, M.D., who was quoted in USA Today on May 15,
1997 as saying “I will certify that any pregnancy is a threat to a woman’s
life and could cause ‘grievous injury’ to her ‘physical health.’ ”101

Opponents of the laws countered that there may be hypothetical
medical circumstances in which the procedure might be the safest option for
women.102

Justice Breyer and four colleagues in the majority concluded that in the
face of this disagreement among distinguished experts, the Court must defer
to the “significant body of medical opinion” suggesting that in certain
circumstances this procedure might afford the safest option for patients.103

Justice O’Connor concurred separately to underscore the proposition that
post-viability restrictions must always include a health exception, as per
Casey.104 Thus, the majority struck down as unconstitutional every state law
in the nation banning so-called partial birth abortions.

Two of the three Justices from the Casey plurality joined the majority
opinion in Carhart I. However, Justice Anthony Kennedy wrote a blistering
dissent, all but accusing his Casey plurality colleagues—Justices Souter and
O’Connor—of betrayal. He had intended for Casey to be a statesmanlike
compromise on the issue of abortion, allowing states greater latitude to
regulate the practice and signal respect for prenatal human life. But in this
case, his colleagues in the majority had cast aside substantial medical

authority that this procedure was not necessary to avert any serious health
risks to a pregnant woman and deferred instead to the medical judgment of
the plaintiffs’ experts and Dr. LeRoy Carhart who admitted to using the
technique “for every patient in every procedure, regardless of indications,
after 15 weeks’ gestation.”105 Echoing prior critics of the “health exception”
jurisprudence of Roe and Doe, Justice Kennedy lamented that the inclusion
of a health exception “which depends on the appropriate medical judgment
of Dr. Carhart is no ban at all.”106 He noted that both the American Medical
Association (who had officially expressed supported for a federal ban in
1997) and the American College of Obstetricians and Gynecologists (who
opposed the ban) “could identify no circumstances under which [partial
birth abortion] would be the only option to save the life or preserve the
health of the woman.”107 He observed that “no expert called by Dr. Carhart,
and no expert testifying in favor of the procedure, had in fact performed a
partial birth abortion in his or her medical practice.”108 Regarding the
question of relative safety, he wrote that “[t]he most to be said for the D&X
is it may present an unquantified lower risk of complication for a particular
patient but that other proven safe procedures remain available even for this
patient.”109 In short, Justice Kennedy was convinced that “substantial
evidence supports Nebraska’s conclusion that its law denies no woman a
safe abortion.”110

Kennedy concluded that Nebraska’s interests in preserving the integrity
of the medical profession, preventing the coarsening of society’s moral
sense, and promoting respect for life more generally were all important
goods served by the challenged law, and that the state was well within its
discretion to accept the opinion of those substantial medical authorities who
found that there was no medical reason to include a health exception in the
law. But his arguments failed to muster five votes among his colleagues.
Until seven years later.

GONZALES V. CARHART (CARHART II)

Between 2000 and 2007 several things occurred that resulted in a
significant shift in the law regarding intact dilation and extraction abortions.
First, a president was elected who supported the proposed federal bans on

partial birth abortion that his predecessor had vetoed. Second, two new
Justices were appointed to the Court, John Roberts and Samuel Alito, the
second of whom replaced a Justice (O’Connor) who had been in the
majority in Carhart I. Third, the U.S. Congress passed the Partial Birth
Abortion Ban Act of 2003, which more carefully specified the prohibited
procedure than the state laws at issue in Carhart I.111 The law banned
abortions in which defined anatomical parts of a living fetus were
intentionally delivered outside of the woman’s body prior to “performing an
overt act that the person knows will kill the partially delivered fetus.”112 But
like the laws struck down as unconstitutional in Carhart I, the federal ban
did not include a health exception.

Nebraska abortion provider LeRoy Carhart sued again along with
plaintiffs in several other U.S. district courts including San Francisco and
New York, and the federal law was enjoined as unconstitutional, following
Carhart I. The Court granted certiorari and in a 5–4 decision authored by
Justice Kennedy affirmed the law as constitutional on its face.113

Justice Kennedy began his opinion by describing in exacting and
graphic detail how the prohibited procedure is performed, including the
testimony of a nurse witness who recounted her own adverse emotional
reaction to observing the effects of the technique on a living fetus when she
had assisted in an intact dilation and extraction abortion.

Justice Kennedy next acknowledged that some of his colleagues in the
majority (Justices Scalia and Thomas) had expressed opposition to the
reasoning and result in Planned Parenthood v. Casey, but asserted that,
rightly understood, the rule from that precedent supported affirming the
federal Partial Birth Abortion Ban Act as constitutional. Justice Kennedy’s
analysis proceeded from the assumption that Casey governed the case,
without explicitly reaffirming it. Because the law applied both pre-viability
and post-viability, the question presented was whether it constituted an
“undue burden” as defined by Casey. In noting what he took to be the
correct framework for analysis, Kennedy observed that “by common
understanding and scientific terminology, the fetus is a living organism
while within the womb, whether or not it is viable outside the womb.”114

In Kennedy’s view, Casey created sufficient latitude for state
legislatures to ban controversial abortion methods that threatened the
integrity of the medical profession, led to a diminished respect for life
generally, and a reduced valuation of the life of the unborn specifically. He
found the federal law not to be unconstitutionally vague—distinguishing it
from the state laws at issue in Carhart I (which he did not overrule, despite
the close similarities shared by the laws at issue in that case and the federal
Partial Birth Abortion Ban Act). The federal law specified precisely what
was prohibited, had a robust intent requirement for prosecution, and did not
sweep into its ambit any other more common abortion procedures used
around the same gestational stage.

Turning to the absence of the health exception, for the same reasons he
cited in his dissent in Carhart I, he found that there were several safe
alternative methods of abortion available such that the categorical ban on
intact dilation and extraction abortions did not constitute an undue burden.
One way to avoid the strictures of the ban, for example, would be to induce
fetal demise prior to delivery of any portion of the intact fetal remains.
Justice Kennedy concluded by affirming that even in areas where there is
medical uncertainty and disagreement among experts, the state and federal
governments enjoy wide discretion to enact laws.

Justice Kennedy noted that his decision did not preclude future so-
called “as-applied” challenges to the federal Partial Birth Abortion Ban
Act’s absence of a health exception, meaning cases brought by actual
patients whose health was threatened by the prohibition of the technique.
As of the time of this publication, no such claim has ever been raised, nor
have there been any reports in the media of injuries suffered as a result of
the federal Partial Birth Abortion Ban Act.

Justice Ginsburg wrote a scorching dissent, joined by three other
colleagues, that is crucial to understand not simply because it fell only one
vote shy of commanding a majority, but because it seems to represent an
important shift in the normative justification for abortion from the previous
grounds of privacy (in Roe) and liberty (in Casey). Justice Ginsburg
grounds the right to abortion in the good of equality. That is, in her dissent
she is emphatic that the right to abortion is central to a woman’s “dignity

and autonomy, her personhood and destiny … her place in society.”115 She
notes that it is an essential mechanism by which a woman can free herself
from outmoded patriarchal norms that have historically prevented women
from pursuing their economic and social ambitions on an equal footing with
men. As suggested in Casey, men are free to embrace forms of sexual
expression and behavior without the bodily burdens of unwanted
pregnancy. A right to abortion levels the playing field for women in the
event of contraceptive failure or unprotected sex. Thus, Justice Ginsburg
emphasized that challenges to restrictions on abortion are not about an
abstract commitment to privacy, but rather “center on a woman’s autonomy
to determine her life’s course, and thus to enjoy equal citizenship stature.”116

Justice Ginsburg took umbrage at Justice Kennedy’s rhetoric in the
majority decision in which he expressed worries that women might not
receive full information regarding the nature of the challenged procedure
and come to regret their abortions when these details later came to light.
Justice Kennedy was reacting to a brief filed by Sandra Cano (the plaintiff
“Mary Doe” in Doe v. Bolton who later became a pro-life advocate, as did
Norma McCorvey, the plaintiff “Jane Roe” in Roe v. Wade) signed by 180
women who reported that they were injured physically and psychologically
by their abortions.117 He opined that the federal Partial Birth Abortion Ban
Act would shape public understanding and encourage women to carry their
pregnancies to term rather than seek late term abortions. Justice Ginsburg
vigorously objected to this line of argument and condemned the notion that
a ban on the procedure was an appropriate tool toward this end. Moreover,
she argued that Justice Kennedy was indulging “ancient notions about
women’s place in the family and under the Constitution” that had long been
“discredited.”118 Justice Ginsburg was particularly critical of Justice
Kennedy’s comment that “[r]espect for life finds an ultimate expression in
the bond of love the mother has for her child.”119 She likewise objected to
his use of the phrase “abortion doctor” (which she took to be pejorative), as
well as his references to a fetus as an “unborn child” and a “baby.”120

Justice Ginsburg’s dissent in Carhart II is an excellent representative of
current thinking among abortion rights advocates, scholars, and at least four

Supreme Court Justices regarding the justification for abortion rights and
the anthropological premises that undergird it.

For nearly ten years after Carhart II, the Supreme Court was largely
dormant in its development of the jurisprudence of abortion. That all
changed in the summer of 2016 when the Court issued its most recent
decision in this perennially vexed domain.

WHOLE WOMAN’S HEALTH V. HELLERSTEDT

Forty years after the Supreme Court struck down Texas’s abortion law in
Roe v. Wade, the same state legislature passed a suite of abortion regulations
following a special session characterized by high drama, acrimony, and a
thirteen-hour filibuster that drew national attention. The law, HB-2,
contained several provisions, including a ban on abortions after twenty
weeks post-fertilization (twenty-two weeks measured from the last
menstrual period or “LMP,” the most common method for dating
pregnancies). But two provisions in particular became the basis for the
Court’s most recent pronouncement in its nearly fifty-year period of
governing the practice of abortion. First, HB-2 required physicians
providing abortions to have admitting privileges at a hospital within a
thirty-mile radius of the site of the procedure. Second, the law mandated
that abortion facilities meet the stringent requirements of “ambulatory
surgical centers,” as defined by the Texas Health and Safety Code,
including operations standards, fire and safety guidelines, and physical
plant criteria. These new laws replaced previous regulations requiring
abortion providers to have a “working arrangement” with nearby hospitals
and a less exacting regime of safety and inspections. These provisions were
proposed in response to the high-profile prosecution of Dr. Kermit Gosnell
in Philadelphia, who was later convicted and sentenced to three life terms in
prison for murdering three newborns who had survived their attempted late
term abortions, and manslaughter for the death of patient Karnamaya
Mongar, who died of an overdose of sedatives in his clinic.121 Gosnell’s
clinic had operated for years without oversight despite deplorable and
unsafe conditions and illegal practices.122 Texas justified the new

regulations on the grounds that they would make abortion safer for women
and raise the quality of care at abortion facilities.

Plaintiffs immediately sued to enjoin these two provisions as
unconstitutional “undue burdens” on the right to abortion. The federal trial
court agreed, but was reversed in part by the U.S. Court of Appeals, which
found that the plaintiffs had failed to demonstrate that the challenged laws
imposed an unconstitutional undue burden, except as applied to one
plaintiff physician in McAllen, Texas, who was the sole abortion provider
for women in the Rio Grande Valley.123

The Supreme Court granted certiorari and in June 2016, in a 5–3
decision (Justice Scalia had died earlier that year, leaving a vacancy on the
Court) struck down the laws as unconstitutional.124 In doing so, Justice
Breyer, writing for the majority, announced a new standard for determining
the constitutionality of abortion regulations aimed at promoting health and
safety. Such laws will be deemed an unconstitutional “undue burden” when
the judicial branch finds that they do not confer sufficient medical benefits
to warrant the limits on abortion access that they impose.125

Two aspects of Justice Breyer’s approach seem to stand in tension with
the Court’s prior decisions, though the Court did not overrule any earlier
precedents. First, by emphasizing the independent role of the judiciary in
evaluating the facts relevant to burdens / benefits analysis of challenged
health and safety regulations, Justice Breyer appeared to limit the authority
accorded by Carhart II to state and federal legislatures to enact laws in the
face of scientific uncertainty and divided expert authority. Second, in a very
odd passage, Breyer misstates the Casey standard altogether when he writes
that “we now use viability as the relevant point at which a State may begin
limiting women’s access to abortion for reasons unrelated to maternal
health.”126 To the contrary, both Casey and Carhart II specified that a state
may restrict abortions prior to viability in the name of a wide array of other
interests, including its desire to signal its high regard for prenatal life, to
promote respect for life generally, or to safeguard the integrity of the
medical profession, so long as such limitations do not constitute an “undue
burden.” The Federal Partial Birth Abortion Ban Act of 2003, affirmed as

constitutional, was itself a pre-viability restriction adopted to advance these
purposes; it was not enacted for the purpose of maternal health and safety.

Justice Breyer and his colleagues concluded that neither the admitting
privileges requirement nor the ambulatory surgical center standards offered
any material benefits for health and safety, but taken together would result
in a substantial burden on access in the form of massive closures of abortion
facilities across Texas. The number of facilities that could comply with both
standards totaled seven or eight. Prior to the case, there were forty abortion
clinics across Texas. The majority inferred that this reduction in available
facilities would result in increased travel time and dramatic overcrowding
of the remaining facilities.127

Justices Thomas and Alito (who was joined by Chief Justice Roberts)
filed separate dissents, objecting to the new benefits / burdens standard and
the application of the new rule in the absence of concrete evidence
regarding the causes of clinic closures and the number of women affected as
a result. Justice Thomas lamented that the new burdens-benefits standard
marked a return to Roe’s discarded strict scrutiny standard of review, as it
invited the judicial branch to conduct an independent searching
interrogation of the efficacy of challenged laws rather than simply evaluate
their burdensome effects. He criticized the majority’s “embrace of a
jurisprudence of rights-specific exceptions and balancing tests” and,
quoting a law review article by the late Justice Scalia, declared it to be “a
regrettable concession of defeat—an acknowledgment that we have passed
the point where ‘law,’ properly speaking, has any further application.”128

Justice Alito complained that the Court had failed to hold the plaintiffs
to their burden of marshalling empirical proof based on hard data, and
instead simply indulged “crude inferences” about the causes and effects of
the clinic closures.129 He noted that even if only seven or eight clinics
remained open, 95 percent of women of reproductive age in Texas would
live within 150 miles of an abortion provider. This travel distance was
deemed not to constitute an “undue burden” in Casey. He further objected
that there had been no rigorous factfinding regarding the capacity of these
remaining clinics to provide abortions to the population of women that
might seek them.

Thus, the two challenged provisions were nullified as unconstitutional,
with Justice Kennedy curiously silent, having written no concurring
opinion. He retired from the bench two years later.

THE LAW OF ABORTION IN AMERICA

These six Supreme Court precedents constitute the fundamental law
regarding abortion in the United States. A fair summary would be that a
bare majority of the Court has found a liberty interest implicit in the Due
Process Clause of the Fourteenth Amendment that includes a right to
abortion. The liberty interest becomes manifest in light of the unique
burdens of unplanned or unwanted pregnancy and parenthood that fall
exclusively on women, threatening their self-conception, self-
determination, and capacity to pursue their chosen social and economic
aspirations. To free herself from these burdens, a woman must be at liberty
first, to define the meaning and value of prenatal human life. The state is
forbidden from imposing its own judgment on this question, especially
when its law is rooted in what the Court takes to be outmoded premises
about gender and social roles. Next, the woman must be free to act on her
belief—to seek an abortion in the event of contraceptive failure or
unprotected sex.

This ultimate liberty is unfettered until fetal viability, after which an
abortion may be obtained when the provider can cite some aspect of a
woman’s well-being, broadly understood (including “familial interests”),
that would be served by the procedure. At no point prior to birth is the
human organism a legal or constitutional “person” with a right to life (its
moral status is always a matter for private judgment), but the Court has
recognized the state’s interest in what it has variously described as
“potential life,” “prenatal life,” and even an “unborn child.”

Operationally, this is translated as a judicial restraint on the state to
“unduly burden” access to abortion pre-viability (Casey), and the obligation
for the state to include a very broad “health exception” to any bans on
abortion post-viability (Casey taken together with Doe v. Bolton). Under the
U.S. Supreme Court framework, no state has ever been permitted to ban
abortion as such either pre- or post-viability. Instead, only ancillary side

constraints on the manner in which abortion is provided have been affirmed
as constitutional. Such measures include waiting periods, informed consent
provisions, parental involvement laws, and bans on particularly
controversial abortion techniques (for example, the Partial Birth Abortion
Ban Act of 2003). Abortion rights advocates strenuously object to such
laws as improper and unjustified restraints on access to abortion. Where a
state seeks to regulate abortion for the sake of women’s health and safety, it
must satisfy the Supreme Court that the purported benefits of such laws are
great enough to warrant the limits on abortion access that they impose.

There have been many recent efforts to curtail abortion both in part and
altogether by states including Texas, Missouri, Ohio, Georgia, Indiana,
Kentucky, and Alabama. These include bans after twenty weeks post-
conception (premised on the unborn child’s capacity to experience pain),
bans on “live dismemberment” of fetuses in the second trimester or later,
bans on abortions solely for purposes of genetic, racial, or sex
discrimination (for example, to prevent the birth of children with Down
Syndrome), bans on abortion after a fetal heartbeat becomes detectable, and
straightforward prohibitions on abortion except in cases where a woman’s
life or health is threatened, or in case of fetal abnormality. All laws of these
sorts have been enjoined as unconstitutional by the lower federal courts
under the Roe / Casey framework.

Yet, there is nothing in Supreme Court jurisprudence of abortion that
forbids states from actively promoting abortion rights, even after fetal
viability.

Recently, several states have moved to sweep away all preexisting
limits on the practice and to require that abortion be funded by taxpayer
dollars. New York, for example, recently passed a state law explicitly
permitting abortion as of right up to twenty-four weeks of pregnancy, in the
“absence of fetal viability,” or at any point in gestation if “necessary to
protect the patient’s life or health.”130 “Health” in this instance, is left
broadly open-ended, as the sponsors and supporters of the law regard
abortion to be a “fundamental component of a woman’s health, privacy, and
equality.”131 The New York law also repealed prior limits on abortion in
state law, including a provision that specified that abortion is only

permissible with a woman’s consent, a law allowing for charges of
manslaughter for causing a woman’s death during an abortion, and a law
requiring care for newborns who survive an attempted abortion. Other states
have followed suit.

Illinois likewise passed a law codifying abortion as a “fundamental
right,” repealing its state law banning partial birth abortions, eliminating
preexisting conscience exemptions for health care providers, requiring
abortion coverage in insurance plans, and explicitly declaring that “the
fertilized egg, embryo, or fetus does not have independent rights under the
law.”132 This last provision shows that current American abortion
jurisprudence allows a state to deny prenatal human organisms the legal
status of persons but forbids them from extending the protections of
personhood. It is, to borrow a phrase from American constitutional law, a
“one-way ratchet.”133

American abortion law under U.S. Supreme Court precedent likewise
permits state supreme courts to recognize robust rights to abortion (beyond
those identified in Roe and Casey) in construing their own states’
constitutions. A handful of state Supreme Courts have done so, most
following the same reasoning as Roe and Casey. Most recently, the Supreme
Court of Kansas declared that there is a right to abortion under that state’s
constitutional guarantee that “all men are possessed of the equal and
inalienable natural rights, among which are life, liberty, and the pursuit of
happiness.”134 The case, Hodes & Nauser MDs v. Schmidt, involved a
challenge to a Kansas state law that banned “dismemberment abortions,”
defined as “knowingly dismembering a living unborn child and extracting
such unborn child one piece at a time from the uterus.…”135 The majority
opinion included an extended exegesis of the scope of “natural rights,”
drawing upon a variety of classical sources of political theory, including the
thought of John Locke.

Locke, the Court observed, wrote that “every Man has a Property in his
own Person.”136 It concluded that “at the heart of a natural rights philosophy
is the principle that individuals should be free to make choices about how to
conduct their own lives, or, in other words, to exercise personal
autonomy.”137 The Court extended this conception of bodily autonomy to

include a fundamental right to abortion, adopted a strict scrutiny standard of
review for state limits on the right, and struck the law down as
unconstitutionally burdensome.

Since Hellerstedt, there has been a significant change in the Court’s
composition, with two Republican appointees, Justices Neil Gorsuch and
Brett Kavanaugh, assuming the seats vacated by Justices Antonin Scalia
and Anthony Kennedy, respectively. It is possible that Justice Kavanaugh
disagrees with his predecessor (for whom he clerked) regarding the
existence and scope of a right to abortion under the U.S. Constitution, and
the application of principles of stare decisis to the Court’s abortion
precedents. If this is so, and four other Justices concur, then perhaps the
Court will overturn the Roe / Casey line of cases and return the regulation
of abortion to the political branches of the states and federal government.
This possibility may be what has motivated state legislatures such as New
York and Illinois and courts such as the Kansas Supreme Court to
proactively ensure that their state laws protect abortion access. Perhaps this
is also the reason that states such as Alabama, Missouri, Kentucky, Georgia,
Indiana, and Ohio have passed laws that appear designed to call the
question of Roe and Casey’s continuing vitality. Only time will tell.

ANTHROPOLOGY OF AMERICAN ABORTION LAW

The foregoing survey of the nearly fifty years of the Supreme Court’s
abortion jurisprudence and the legal framework that it has created reveals
that its animating foundation of human identity and flourishing is
expressive individualism. The law proceeds from the assumption that the
core unit of reality is the atomized and isolated self, lacking any unchosen
constitutive attachments, along with the obligations and benefits that might
flow from them. It reduces the person to a lonely agent of desire, defined by
the will and the capacity to make choices, whose highest thriving is self-
definition and the pursuit of economic and social aspirations.

Given these suppositions about what it means to be a person, it is not
surprising that the Court discovered a constitutional right to self-
determination—under the variable and shifting auspices of privacy, liberty,
and equality—to exercise “self-help” in the form of abortion so as to

overcome the burdens and obstacles to pursuing one’s chosen destiny,
whether they be imposed by others, the state, or perhaps even nature itself.

It is also not surprising that viewing human identity through the lens of
expressive individualism as it does, the Court excludes from the community
of legal persons those living human organisms not yet capable of actively
discerning, inventing, and pursuing the projects essential to self-definition.
To be clear, this is not simply a matter of the Court’s narrow interpretation
of the word “person” in the Fourteenth Amendment, but results from its
categorical prohibition on the state from extending the protections of any
form of legal personhood to prenatal life in the context of abortion. The
Court explicitly empowers private citizens to judge for themselves the
moral status of the unborn, without interference from the state. Which is to
say that the Court implicitly judges the human being in utero to be
something far less than a legal person for reasons that it never explains.

Finally, the anthropological assumptions of the Court obscure from
view the networks of relationships in which the parties are embedded—
relationships of family (including, but not limited to maternal-fetal
biological kinship), community, and polity—that could and should be
responsive to the basic human needs that arise from unwanted or unplanned
pregnancy. Accordingly, the narrow right the Court identifies as crucial to
human flourishing is simply the entitlement to terminate the unwanted
pregnancy and the life of the prenatal being in utero. There is a brute logic
to the recognition of this right given the Court’s background assumptions
about the nature of human life, humanly lived. In a world of atomized wills
locked in conflict with one another (and other sub-personal beings), the
right of private force is essential to preserving the fundamental right to
express one’s identity and to pursue one’s chosen destiny. And this right is
particularly weighty when balanced against the interests of nonpersons.

Viewed in this light, the Court’s rendering of the constitutional right to
abortion is best understood as the liberty to protect and vindicate the most
important goods at the heart of expressive individualism. It is the liberty to
define for oneself the meaning of procreation and prenatal life without
interference or imposition by the state, and the freedom to act on this choice
by terminating a pregnancy prior to viability as a matter of right, and even

after viability, in the name of a wide array of additional goods relating to
well-being (including “familial heath”), by operation of Doe v. Bolton’s
health exception. The right to abortion thus conceived is not simply about
responding in justice and compassion to the bodily and psychic burdens
imposed on women by unwanted pregnancy, but rather, in the Court’s
words, to protect the freedom to “organize intimate relationships and
ma[ke] choices that define [women’s] views of themselves and their places
in society.”138

I believe it is true that persons are free, particular, and individuated
beings, and that interrogating and then expressing the truths discovered in
one’s inner depths can be a fruitful and dynamic source of meaning. Indeed,
such expression can be a crucial catalyst for promoting justice and
resistance to conventional but repressive ideologies. It is true that freedom
of conscience is important to human flourishing, and that many—perhaps
most—important questions are rightly left to private judgment and private
ordering. Each person is, in deep and important ways, associated with his or
her will, judgment, rationality, and cognition. What’s more, women deserve
to be free and equal to men in the eyes of the law and should not be held
hostage to discredited patriarchal conceptions of social roles imposed by the
state, or anyone else for that matter. They should indeed be free, as the
Supreme Court has written, to shape their own destinies, in accordance with
their self-understanding and their spiritual imperatives, as they understand
them. They should be free and uncoerced in matters of procreation and
parenthood.

The problem for American abortion law is that this is not the whole
truth about human beings, and these are not the only goods at stake or evils
to be avoided in this most vexed and bitterly contested realm of public
bioethics. What is missing? A serious consideration of embodiment and its
meaning and consequences. This “forgetfulness of the body” distorts and
stunts the Court’s understanding of the full human dimensions at issue.
Specifically, the Court is blind to the reality of vulnerability, dependence,
and natural limits that necessarily attend any problem or conflict involving
embodied beings.

Because the Court fails to consider embodiment as an indispensable
aspect of human reality, it misses goods, practices, and virtues that are
essential to the thriving of the individual and shared lives of beings who
live, die, and encounter themselves and one another as bodies. Most
gravely, the Court fails to consider the networks of uncalculated giving and
graceful receiving that are necessary for the survival of embodied beings, as
well as vital to their development into the kind of people who can sustain
such life-giving networks of relationships. The virtues and practices
essential to building and maintaining these networks—generosity,
hospitality, misericordia, gratitude, humility, openness to the unbidden,
solidarity, dignity, and honesty—help one to learn how to make the good of
another one’s own good—to be a friend in the truest sense. Alongside the
development of these practices and virtues, the cultivation of moral
imagination—to see the other who has a claim on our attention and support
—and the pursuit of practices that take us “outside of ourselves” is essential
to the project of building, sustaining, and learning from these networks of
giving and receiving.

The Supreme Court jurisprudence of abortion is blind to all of this
because the law it constructs is not true to lived human reality, which
depends on unearned privileges and unchosen obligations, and is populated
by vulnerable, dependent, and disabled human beings with claims on our
care and concern by virtue of their relationship to us and not our consent.
Therefore, the Court’s prescriptive framework is gravely misguided, and
indeed, inhuman.

The primary relationship that is invisible to expressive individualism,
and by extension, the Court’s abortion jurisprudence, is that of parents and
children. Focusing as it does on the atomized individual will seeking to
express and live out its internally discovered truths in an authentic way,
expressive individualism cannot make sense of the connection between
parent and child. Parent and child are, instead, conceived as competitors
over scarce resources necessary to pursue their own individual interests.
This is precisely how the Court frames the conflict of abortion—a clash of
strangers each seeking its own advantage. Indeed, this is how it understands
human pregnancy itself.

But this description of procreation, pregnancy, and parenthood does not
do justice to the lived, embodied human reality of these experiences.139

Analogies to disputes with trespassers to property, bodily invasions by
parasites, or being kidnapped and conscripted into supporting an
unconscious violinist are not apt. Psychologist and feminist Sidney
Callahan puts it thus:

The abortion dilemma is caused by the fact that 266 days
following a conception in one body, another body will emerge.
One’s own body no longer exists as a single unit but is
engendering another organism’s life. This dynamic passage from
conception to birth is genetically ordered and universally found in
the human species. Pregnancy is not like the growth of cancer or
infestation by a biological parasite; it is the way every human
being enters the world.140

It is not simply that the womb is the locus of gestation, growth, and
birth of every human being, but in every case in which a woman seeks an
abortion, the relationship involved is, biologically speaking, that of mother
and child. They are not strangers.

But the Court’s reasoning, limited by the anthropology of expressive
individualism, misses this relationship and, in doing so, the opportunity to
reflect on the fact that the parental relationship is not the transactional
domain of consent, but is the pristine case of uncalculated giving and
graceful receiving. It is the singular experience that “takes one outside of
him or herself,” and transforms him or her from an “I” to a “we.” A child
does not and need not earn the privilege of her parent’s care. The parent
does not contract to take on such obligations. Being a parent means being
responsible for the neediness of one who is utterly dependent and
vulnerable, regardless of what one might receive in return. A parent takes
on this duty by virtue of an embodied, biological relationship. Human
beings begin their lives in utero already embedded in the relationship of
children to parents. (Of course, biological parents may discharge their
obligations by making an adoption plan, facilitating the construction of a

new family—a genuine place of belonging for the child in need, with real
and new bonds of parenthood. In adoption, as Gil Meilaender has written,
love and shared history transcend biological kinship, and create a genuine
family for all involved.141)

But despite the fact that the life in utero is a distinct living human
organism of the species homo sapiens, genetically related to the woman
seeking the abortion (in precisely the same way that all children and parents
are), the maternal-child relationship is effectively invisible in the Court’s
reasoning. The Court, following the rubrics of expressive individualism,
turns away from the embodied givens of human procreation, and treats the
unborn human being as an isolated individual. But perhaps because the
fetus cannot yet actively participate in the behaviors that expressive
individualism recognizes as proper to persons—higher cognition, self-
awareness, reflection, and expression of desires—she is relegated to the
domain of legal nonpersons, where her status is to be determined by those
who are capable of these actions.

Thus, by virtue of its embrace of expressive individualism, the Court is
not able to take full account of the biological relationship of mother and
child, nor can it even offer a description of the individual life in utero that
corresponds to lived embodied reality. The relationship is that of strangers,
and the fetus is a mere abstraction.

Similarly, the discussion of the burdens of unwanted or unplanned
pregnancy and parenthood are incomplete. Of course, these burdens are real
and can be crushing. In some cases, pregnancy can pose grave threats to a
woman’s health or even life.

Unchosen parenthood can create overwhelming stresses and burdens,
both economic and emotional. But because the Court atomizes the woman,
it both abstracts from the meaningful context of parenthood and isolates her
in her suffering, abandoning her to struggle alone as a disembodied self in a
world of contending wills, lacking any unchosen obligations or duties of
care that might be owed to her by her family, community, state, or nation.
Because it is rooted in expressive individualism, the American
jurisprudence of abortion cannot respond fully to a pregnant woman’s

dependence and vulnerability, as it ignores key avenues of aid and support
to which she is entitled as a member of the human community.

Because of its implicit embrace of expressive individualism, the Court
likewise misses the fact that parents and children are together embedded in
a wider network of others who, by virtue of their relationship as extended
family members, neighbors, fellow citizens, and polity members, owe them
obligations of just generosity, hospitality, misericordia, solidarity, honesty,
and respect for their intrinsic equal dignity. Parents and children both
depend on these networks, and through their participation in them, become
the kind of people who can contribute to their continued sustainability,
namely, the sort of people who are able to make the good of others’ their
own.

But the Court conceives of pregnancy and parenthood as a clash of
strangers, “clad in the armor of their rights” (to borrow a phrase from Carl
Schneider’s more general critique of the over-emphasis of autonomy in
bioethics).142 Thus, the Court’s chosen anthropology transforms medicine
into a tool that is wielded to eliminate unwanted burdens and the beings
whose lives are burdensome in an act of “self”-defense. In fact, by
emphasizing the sole authority of women to seek abortion in the name of
securing her future on an equal footing, the Court lends support to a man
who chooses to abandon a pregnant woman in need, since she alone decides
whether or not to carry the baby to term. In doing so, the Court embraces an
anthropology that weakens the ties between parents and children by
ignoring the biological and genetic relationship of mother (and father) and
prenatal child. It further weakens the ties of extended family, neighbors,
fellow citizens, and the government to the pregnant woman because it
isolates her in her suffering and vulnerability and ignores the obligations of
everyone to come to the aid of women and families in crisis.

Through the frame of expressive individualism, and by ignoring
embodiment and the goods, virtues, and practices necessary to responding
to its challenges, the Court is left with only one option to respond—the
freedom to use force to terminate the prenatal life that constitutes a threat to
the individual woman’s future.

PROVISIONAL WAY FORWARD: AN ANTHROPOLOGY OF HUMAN EMBODIMENT IN

ABORTION LAW AND POLICY

The Supreme Court in Roe and Casey erred by grounding the law of
abortion in an impoverished anthropology that conceals the essential reality
of the very human context it seeks to govern, and thus prevents the law
from responding to the full range of human needs at issue. Whether
constructed by the Supreme Court under the auspices of a maximally
unbounded theory of substantive due process, or established through more
conventional procedures by a state legislature or the U.S. Congress, what
would a legal framework for abortion that remembers the body look like?

Given the intricacies and complexities of making and administering
law and public policy in a federalist regime as large and diverse as the
United States, it will only be possible here to outline some broad concepts.
But as will become clear momentarily, even framed at a high level of
abstraction, the principles for the law and policy of abortion rooted in an
anthropology of human embodiment do not fit neatly within the left-right or
Republican-Democrat paradigm of modern-day America. All sides of the
current American political divide may find the following suggestions
challenging and provocative to the familiar and preferred legal and
normative categories, as expressive individualism runs deep in American
law and politics.

To start, we must remember that the law exists to protect and promote
the flourishing of persons by regulating conduct, but also to teach and shape
the public’s understanding of the demands of justice, freedom, and equality.
A legal and political regime that takes embodiment seriously would be
especially mindful of its concrete human entailments, namely, vulnerability,
dependence, and natural limits. Taking account of the “virtues of
acknowledged dependence” necessary for the survival and flourishing of
embodied human beings, law and public policy would promote the
construction and strengthening of the human networks of uncalculated
giving and graceful receiving upon which human beings depend both for
their very survival and to realize their potential.143 It would encourage and
reward the practices of just generosity, hospitality, and accompaniment of
others in suffering (misericordia). It would likewise seek to inculcate the

practices of gratitude, humility, openness to the unbidden (and tolerance of
imperfection), solidarity, truthfulness, and respect for dignity. Law and
public policy animated by an anthropology of embodiment would seek to
strengthen the familial and social ties that serve these ends, including
institutions of civil society that help to combat a purely inward-looking and
individualistic perspective and encourage a sense of belonging. Finally, the
law would serve to cultivate the moral imagination, helping persons to see
more clearly those other members of the community to whom they owe
duties of care, and of whom they can make claims of assistance for
themselves and their families.

Where incentives and inducements fall short, and people find
themselves without the support and security of the networks of giving and
receiving essential to life as humanly lived, the law must step in directly to
offer protection and render aid. This could, of course, entail a very robust
role for government.

In the context of abortion, an approach to governance grounded in an
anthropology of embodiment looks very different from the regime
established by the Court in Roe, Casey, and their judicial progeny. First, the
framing of this issue would not by styled, as under current law, as a clash of
atomized interests—a woman’s interest in defining for herself the meaning
of procreation, prenatal life, avoiding the physical and psychic burdens of
unwanted pregnancy and parenthood, and pursuing her chosen future on an
equal footing with men, versus the state’s interest in “potential life.” Rather,
it would build from the biological reality of pregnancy and parenthood,
from which several principles and points of decision would follow.

But first, why parenthood? Because an anthropology of embodiment
takes seriously the process by which human beings come to be, how they
survive and thrive, and the web of relationships in which they are embedded
as they come into the world. The Supreme Court implicitly followed Tooley
and Warren by drawing a bright line distinguishing biological genetic
humanity—living members of the species homo sapiens—from the
narrower classification of “persons.” But whereas Tooley and Warren drew
the line at the acquisition of certain cognitive capacities connected to self-
understanding and expression, the Supreme Court drew the line at birth as

the moment that the state may extend the full legal protections of
personhood to a new human life.144

A legal approach to the question of abortion grounded in the
anthropology of embodiment would be very skeptical of a framework for
the legal protection of living human beings that either depends on the
acquisition of capacities or waxes and wanes based on conditions and
degrees of dependence, or the interests and opinions of others (even those
of the human subject’s parents). The anthropology of embodiment as set
forth above regards frailty, weakness, dependence, vulnerability and even
disability as part and parcel of the human condition. It does not privilege
the capacities of cognition and will. It does not reward the powerful with
greater legal protection and withhold the benefits of the law from the weak,
because of their weakness. An anthropology of embodiment would follow
Hans Jonas’s injunction that “utter helplessness demands utter protection.”

As a matter of basic embryology, the life of the human organism begins
as a biological matter with fertilization, from which emerges a distinct, self-
directing, genetically unique embryo, which moves (if all goes well) along a
species-specific continuum of development, to fetus, newborn, adolescent,
adult, and so forth. From the beginning, the new human being is, of course,
radically dependent upon her mother to nurture and bear her in her womb.
“Personhood” theory seeks to differentiate the moral status of the organism
based on specified capacities or circumstances. Unlike expressive
individualism, which dictates that the criteria for personhood are those that
enable self-reflection, expression, and pursuit of one’s destiny according to
the endogenous truths of the inner self, an anthropology of embodiment
would regard any living member of the species homo sapiens as entitled to
the respect owed to persons, regardless of her location (in utero or ex utero),
age, size, state of dependence, active capacities for cognition or desire, her
circumstances, and perhaps most of all, regardless of the opinions of others.

In an anthropology of embodiment, there are no pre- or post-personal
human beings. Being human is the only criterion for membership in the
community of persons.145

Thus, an anthropology of embodiment would reject the Supreme
Court’s rule that in American abortion law the definition of fetal

personhood must remain relative and subjective—to be determined by
every pregnant woman for herself without imposition of the state. In this
view, all human beings are persons and must be recognized as such in the
law.

Importantly, the anthropology of embodiment does not simply regard
the fetus as just any person. She is the child of the woman seeking the
abortion. This, of course, means that the woman seeking the abortion is not
a stranger to the fetus. She is her mother. The relationship, as understood
through the anthropology of embodiment, is one of parenthood—the most
fundamental network of uncalculated giving and graceful receiving
essential to life as humanly lived. The question of abortion is thus best
understood as a matter involving a mother and her child.146

Law and policy animated by an anthropology of embodiment would
view the mother as a vulnerable, dependent member of the community, who
is entitled to the protections and support of the network of uncalculated
giving and graceful receiving that must exist for any human being to
survive and flourish. Her neediness is a summons to everyone who is able
to come to her aid and extend the same gestures of just generosity,
hospitality, and accompaniment in suffering (misericordia) on which they
have depended and from which they have benefited in their own lives as
vulnerable dependent beings. This applies with special force to the male
who is the father of the child she carries. It likewise applies to her
immediate and extended family members, her neighbors, her community,
and her polity (including the government). To be fully human—to practice
the virtues necessary to sustaining life as humanly lived—they must come
to her aid, simply by virtue of and in proportion to her neediness. This is an
unchosen obligation that binds everyone who can to respond to her
vulnerability and need. In turn, the law must encourage and reward such
care and assistance. It must create space for individuals and civil society to
respond in charity to the mother in crisis. And if there are no family
members, neighbors, or voluntary associations that come forward to help, or
they are inadequate to or unworthy of the task, then the government itself
must do so directly and indirectly.

And to be clear, these unchosen obligations do not end with the birth of
the child. The networks of uncalculated giving and graceful receiving are
necessary throughout the human life span; we all exist on a “scale of
disability” for our entire lives, so long as we are embodied. Concretely, this
means the law must facilitate and catalyze support for mothers and fathers,
their extended family, and the broader community to care for children in
difficult circumstances. Of course, sometimes parents care best for their
children by making an adoption plan, so that a genuine family might be
formed with those who do not share biological kinship but will assume the
role of parents by welcoming a child as their own.

Law and policy infused by the anthropology of embodiment would
view the living human being in utero as a child, whose dependence and
vulnerability likewise call others to render aid. The presumed incapacities
of the unborn child to actively engage in self-reflection and expression do
not disqualify her from membership in the community of persons. Nor does
her state of radical dependence. She is therefore entitled to the moral
concern and care of her parents, her extended family, and her community.
They owe to her the just generosity, hospitality, and accompaniment that
sustained them in their dependence. But the unborn child is also entitled to
recognition by the law as a person. Thus, she should be protected by the
law against the unjustified and unexcused actions of others intending to do
her harm. This is not to say, of course, that clinicians may not pursue
methods aimed to help the mother that bear significant indirect risks to the
child, including termination of the pregnancy by preterm delivery, followed
by best efforts to preserve the newborn child’s life.

In those tragic circumstances where the continued pregnancy
constitutes a grave and proportionate risk to the mother, the law should
deploy the familiar legal concepts developed to govern the use of
potentially lethal force against innocent persons who pose threats to others.
More specifically, the matter should be framed as a conflict between mother
and child. Working out how the American legal doctrines of justification,
excuse, necessity, and such related concepts as “proportionality,” “unjust
aggression,” and the like would apply to the wholly unique context of
pregnancy would require a great deal of fact-intensive analysis and

reflection to answer responsibly. Such an inquiry is beyond the scope of this
book but must be undertaken in the future to flesh out the concrete
entailments of a public bioethics rooted in an anthropology of embodiment.
The fundamental point here is that the crisis of unplanned or unwanted
pregnancy should be viewed through the normative categories of mother,
child, father, family, community, and polity (including the government).

In short, law and policy driven by the anthropology of embodiment
would respond to the question of abortion in a way that is quite distinct
from the current American abortion jurisprudence. But it is also important
to note that it is not a purely “fetus-centered framework” rooted in a desire
“to compel women who are resisting motherhood to perform the work of
bearing and rearing children,” out of fidelity to an ancient patriarchal and
repressive gender-based vision of social roles.147 It is, instead, a family and
community-centered framework, oriented toward the construction and
development of the networks of giving and receiving that are essential to
the survival and success of all human beings in their embodied vulnerability
and interdependence. This mode of law and policy embraces the humanity
of all individuals involved, understood according to their relationships to
one another in such networks. It would hold people to account to take
responsibility for one another, and in those circumstances where no such aid
is forthcoming, would step into the breach directly and provide protection
and support.

Such law and policy would also seek to make room for, encourage, and
facilitate the practice of gratitude by the beneficiaries of the sustaining
networks of care and aid, including the mothers, children, parents, and
communities whose lives are touched by unplanned and unwanted
pregnancy. The fitting response to selfless giving is graceful receiving, and
the related virtues of openness to the unbidden, tolerance of imperfection,
and humility.

How the law might be concretely designed and implemented to
facilitate the construction and tending of these networks of giving and
receiving, along with the goods, virtues, and practices necessary to sustain
them is, to be sure, a very complicated and difficult question. It involves
myriad considerations of how American law can contribute to these ends

using its numerous and fine-grained mechanisms for shaping behavior
ranging from passive suasion to direct compulsion, and many measures in
between. In broad strokes, a legal regime for abortion rooted in the
anthropology of embodiment would extend legal protections to unborn
children from the moment they are conceived, forbidding others from
intentionally harming them and providing for their care. It would, at the
same time, offer maximal support for their mothers, providing for their
health care and other needs, both during and after the pregnancy. It would
likewise incentivize family members (including the child’s father),
employers, the community, and the state to construct the vast networks of
giving and receiving required to support the flourishing of all involved. In
those rare circumstances where continued pregnancy constitutes a serious
threat to the mother, the law will draw upon existing doctrines and
principles governing circumstances where the vital interests of innocent
persons conflict, keeping in mind that this is a case involving a mother and
her child. The question of concrete implementation of such a legal
framework, and whether it operates through private ordering within the
organs of civil society or by direct governmental intervention and oversight
is for another time. It will suffice for present purposes to have articulated
the broad normative and anthropological foundation on which more
particular legal structures might be erected.

4

Assisted Reproduction
[Reproductive technologies] are means to achieve or avoid the reproductive experiences
that are central to personal conceptions of meaning and identity.

—PROF. JOHN A. ROBERTSON, Children of Choice, 4 (1994)

Reproductive medicine is helping prospective parents to realize their own dreams for a
disease free legacy.

—DR. GERALD SCHATTEN, TESTIMONY BEFORE THE PRESIDENT’S COUNCIL ON BIOETHICS (DECEMBER 13, 2002)

In 1969, British researchers Robert G. Edwards and Patrick G. Steptoe
achieved a feat that changed the world forever. As described in the Nature
article entitled “Early Stages of Fertilization in vitro of Human Oocytes
Matured in vitro,” their research team conceived a living human embryo by
combining ova and sperm in a glass dish (literally “in vitro”).1 Steptoe and
Edwards were thus able to hold and observe the human organism at the
earliest stage of development outside the body. In natural reproduction, the
embryo emerges from sperm-egg fusion in the fallopian tube but is not
detectable by modern techniques of pregnancy testing until days later.
Steptoe and Edwards were able to bring out into the light what had long
been shrouded in mystery.

Of course, there were major transformations in human procreation
before and after Edwards and Steptoe developed in vitro fertilization (IVF).
Nine years earlier the FDA’s approval of an oral contraceptive pill—Enovid
10 (known colloquially as “The Pill”)—had created the possibility of
reliably severing sexual intercourse from pregnancy.2 Four years after the
publication of their article in Nature, the Supreme Court’s decision in Roe v.

Wade recognized a constitutional right to abortion—the freedom to break
the necessary connection between pregnancy and birth.3 But IVF was
altogether different. IVF promised not only a possible avenue for infertile
people to conceive biologically-related children, it fractured almost entirely
the previously integrated component parts of human reproduction—
fertilization, gestation, and raising children. For the first time, it was
possible to create a human being whose genetic parents (providers of egg
and sperm), gestational mother, and rearing parents were five different
people, not including the practitioner and staff who prepared and cultured
the gametes and performed the fertilization itself.

In 1978, Edwards and Steptoe’s research moved from bench to bedside
with the birth in England of Louise Brown, the first “test tube baby,” as she
was described in the press.4 And, three years later, in 1981, Elizabeth Jordan
Carr became the first such baby born in America.5 Along with the relief
promised to the infertile through this revolution in medicine, IVF presented
new and radical challenges to seemingly stable conceptions—the nature and
meaning of human procreation; the identity, worth, and definitional
boundaries of human persons; the substance and contours of parenthood
and obligations to children; the fitting ends and means of biomedical
science; what it means to be a “patient”; conceptions of health and
wholeness; and norms against commodification of the body and its parts.

To date, more than one million babies conceived by IVF have been
born in the United States.6 According to the Centers for Disease Control in
2016 (the last year for which such numbers are available), 76,897 infants
were born in the United States following IVF, representing 1.9 percent of all
babies born that year (3,941,109).7 From 2007 to 2016, the number of
assisted reproductive technology (ART) cycles performed in America had
increased 39 percent.8 To be sure, these children represent the fulfilments of
the hopes and dreams of a vast array of loving parents, and relief from the
suffering caused by infertility.

But, as with all paradigm shifts in humankind’s enhanced power over
nature, there is another side to this reproductive revolution. In the United
States alone there are reports of one million human embryos frozen in
cryostorage.9 Their existence stokes a constant and growing demand for

their use and destruction in biomedical research (for example, for the
derivation and the study of human embryonic stem cells), even though
surveys have shown that the vast majority of these embryos have not been
designated for donation to researchers.10

There is a growing market for gametes, including nationwide
advertising campaigns soliciting highly intelligent, athletic, and
accomplished female college students to sell their ova, sometimes for tens
of thousands of dollars in compensation. One for-profit enterprise,
California Conceptions, procures sperm and ova and creates “batches” of
embryos which it then sells to patients for implantation (to initiate a
pregnancy) at a fraction of the cost of conventional IVF, including a money-
back guarantee.11 The firm typically conceives multiple embryos from a
single donor of ova and sells the embryonic siblings to different clients.
Prospective patients can browse the catalogue of gamete donors in the
hopes of having a baby with preferred traits. An earlier iteration of this
business model was the “Repository for Germinal Choice,” a sperm bank
that purported to make available the sperm of Nobel Prize winners and,
when that proved to be too difficult, other “Renaissance Men” of great
achievement and quality.12 Only three Nobel Laureates, including avowed
eugenicist William Shockley, actually donated sperm, but no ova were
fertilized with their seed. Most of the sperm donors, it turned out, were
perfectly ordinary people. It closed its doors in 1999.

Embryo screening for sex selection has become a common feature of
IVF practice; 73 percent of clinics in the United States offer this testing.13

There are patients who use genetic screening to identify and initiate
pregnancies with embryos who are immunocompatible to an older sibling
who needs an umbilical cord blood stem cell transplant (harvested upon
birth of the newborn). Babies born from this process are sometimes called
“savior siblings.” The Guardian has reported that an American biotech
company named “Genomic Prediction” goes beyond testing for single-gene
mutations or chromosomal abnormalities to aggregating data to develop
“polygenic risk scores” that indicate an increased probability of having a
child with a variety of health difficulties, but also tests embryos for
probable “low IQ.”14 According to the Guardian, “the company projects

that once high-quality genetic and academic achievement data from a
million individuals becomes available, expected to be within five to ten
years, it will be able to predict IQ to within about 10 points.”15

As will be developed further below, all of the foregoing is perfectly
legal and essentially unregulated beyond the usual laws governing the
practice of medicine, the use of human tissues, cells, and tissue and cell-
based products, and the general civil and criminal laws of the separate
states.

It is this second domain of public bioethics—assisted reproduction—to
which this inquiry now turns.

Whereas the public questions of abortion involve the termination of
pregnancy, the avoidance of parenthood, and the ending of nascent human
life, the domain of inquiry of this chapter—assisted reproduction—concerns
the initiation of pregnancy, the pursuit of parenthood, and the creation of
new human life. Both contexts are also distinguished by understandably
profound and overwhelming emotional counterpoints—on the one hand,
dread and panic at the prospect of the burdens and disruptions of unwanted
pregnancy and parenthood, and on the other, desperate sadness and longing
for a child of one’s own flesh. But normatively, anthropologically, and
legally speaking, these vital conflicts of American public bioethics are
deeply linked to one another. Unlike American abortion law, which is
shaped by nearly fifty years of jurisprudence, the realm of assisted
reproduction is notable for the absence of law governing it. Even though
this is the case, assisted reproduction is squarely rooted in the anthropology
of expressive individualism.

United States law defines ART as “all treatments or procedures which
include the handling of human oocytes or embryos” for the purpose of
establishing a pregnancy.16 This includes in vitro fertilization and its
variants, egg or embryo cryopreservation and donation, and gestational
surrogacy. It does not include artificial insemination (injection of sperm into
the uterus) by a donor or from a woman’s partner. For the sake of brevity,
our discussion will not engage in depth with the important questions of
determining legal parentage (which varies from state to state), insurance
coverage, the patchwork landscape of state laws governing surrogacy, and

the novel and projected techniques of ART that are on the more distant
horizon, such as deriving sperm and egg from stem cells or aborted fetuses,
artificial wombs, creation of live born animal-human hybrids or chimeras,
genetic engineering of children (for example, by cloning or gene “editing”),
or gestating babies in machines or nonhuman animal surrogates. These
important questions will be reserved for a future analysis, which will
depend, of course, on the more fundamental anthropological analysis to be
set forth in the pages that follow. The discussion here focuses primarily on
IVF and the closely-related techniques in current use.

IVF: A PRIMER

As conventionally practiced, IVF involves five steps: (i) collection and
preparation of gametes; (ii) fertilization; (iii) screening and transfer of the
resulting embryos to the gestational mother’s uterus and disposition of non-
transferred embryos, if any; (iv) pregnancy; and (v) birth. Each stage
involves distinct interventions and possible adjunct techniques and entails
various risks to mother and child-to-be.

Sperm is most often obtained directly from the prospective father; less
frequently it is procured from a donor. Obtaining ova is significantly more
difficult, painful, and costly. The ova provider is most often also the
prospective gestational and rearing mother. The process usually involves
the chemical stimulation of her ovaries to produce many more mature ova
than the single egg released during a typical menstrual cycle. This is called
“superovulation.” One possible complication from this procedure is
“Ovarian Hyperstimulation Syndrome,” which involves severe enlargement
of the ovaries and fluid imbalances that in extreme circumstances cause
serious health risks, including death. Such severe cases of the disorder are
rare, with a clinical incidence of 0.5–5 percent.17

The clinician tests the patient’s blood and monitors the ova maturation.
Once mature, the ova are harvested, most often by ultrasound-guided
transvaginal aspiration. Using ultrasound to visualize the procedure, the
clinician inserts a needle into the wall of the vagina and withdraws the ova
from the ovarian follicles. Complications from this procedure are rare but

can include accidental perforation of nearby organs and the typical risks
associated with outpatient surgery.

Once the ova are removed they are placed in a culture medium. Sperm
are modified—seminal fluid is removed and replaced with a synthetic
medium. Sometimes sperm are sorted for motility.

Conception is attempted in vitro by combining the gametes in a dish, in
hopes that a sperm fuses with the egg, from which arises a new, genetically
distinct living human organism, the embryo. The traditional method of
attempting fertilization is simply to collocate ova and sperm and wait for
fertilization to occur as it might in the fallopian tube. There are other
methods, including Gamete Intrafallopian Transfer (GIFT), in which the
gametes are inserted into the patient’s fallopian tube in hopes that
fertilization will occur.18 But an increasingly common fertilization
technique is called Intracytoplasmic Sperm Injection (ICSI), which involves
the direct injection of one sperm into the ovum.19 ICSI was discovered by
accident (when Belgian researchers mistakenly injected a sperm into an
ovum) but was later developed as a method of fertilization for men
suffering from male factor infertility. Its rate of use has increased
dramatically even for cases not involving this condition. From 2007 to
2016, the total percentage of cycles involving ICSI increased from 72
percent to 81 percent.20 Among cycles without male factor infertility, ICSI
use increased from 15.4 percent in 1996 to 66.9 percent in 2012.21 The
reason for this increase is not clear. According to the CDC, the “use of ICSI
did not improve reproductive outcomes, regardless of whether male factor
infertility was present.”22 While instances of fertilization may have
improved, the rate of live births has not. “For cycles without male factor
infertility, ICSI use was associated with decreased rates of implantation,
pregnancy, live birth, and multiple live births compared with conventional
IVF.”23 Some have speculated that the inefficacy of ICSI may be connected
to the circumvention of the usual competition among sperm to penetrate the
egg, allowing “unfit” sperm that would not have survived this natural
process to fertilize the egg.

If fertilization is successful, the embryos are placed in a culture
medium and evaluated for qualities that are associated with enhanced

likelihood of implantation (though according to clinicians this is an inexact
“science”).

Some embryos are evaluated using preimplantation genetic diagnosis
(PGD) to test for a variety of conditions, not all of which relate to the
physical health of the resulting child. A 2018 study found that among all
ART clinics in the United States, 92 percent offer PGD.24 In this process,
the early embryo is “biopsied,” and cells are removed for analysis.
Clinicians can perform the biopsy on the polar bodies just after fertilization,
on embryos three days following conception at the six-to-eight cell stage of
development (“cleavage stage” or “blastomere” biopsy), or on day five or
six at the blastocyst stage of development (“blastocyst” biopsy), when the
embryo is comprised of approximately one hundred twenty cells.25 PGD is
almost always combined with ICSI to make embryo biopsy a cleaner and
easier process. Two-cell biopsy has been associated with a decline in
successful implantation compared with single-cell biopsy. Some have raised
concerns about the long-term health effects on children born following
embryo biopsy—which, in the case of blastomere biopsy, can involve
removal of a significant percentage of the embryo’s cells prior to
implantation. The biopsied cells are evaluated for specific genetic or
chromosomal conditions. Those embryos that meet the predetermined
criteria are transferred to the patient or surrogate’s uterus or are frozen for
future reproductive purposes. Those embryos that fall short of the criteria
are discarded and destroyed.

PGD is commonly used to screen embryos for chromosomal
abnormalities associated with implantation failure and various disorders,
including Down Syndrome. It is also used to detect single-gene disorders
such as cystic fibrosis, Tay Sachs, and sickle cell disorder. (At present, more
than 1,000 single gene disorders have been identified.) PGD can also be
used to test for a heightened risk for some single-gene late onset diseases
and conditions such as certain forms of ovarian and breast cancer,
Huntington Disease, and Alzheimer’s Disease.26 PGD can even be used to
identify embryos that are immunocompatible with a sick older sibling. Such
embryos are transferred to a woman’s uterus to initiate a pregnancy, and
once such children are born, stem cells are harvested from their umbilical

cord blood and transplanted to the elder sibling. This procedure has been
used to treat children with Fanconi anemia.27

But PGD is also used for nonmedical purposes. Chromosomal analysis
in PGD can be used to determine the sex of the embryo. As of 2018, 73
percent of American IVF clinics offered PGD for sex selection.28 Of these
clinics, 94 percent offered sex selection for “family balancing” (for
example, choosing the sex of one’s offspring in light of current family
composition), and 81 percent offered it regardless of the patient’s
rationale.29 Moreover, 84 percent of clinics offered PGD for family
balancing and 75 percent offered it for purely elective sex selection for
patients not suffering from infertility, who could conceive and bear children
without assistance.30 Jeffrey Steinberg, a clinician in California, advertised
screening not just for sex selection, but to choose skin, eye, and hair color.
After public outrage, he discontinued screening for skin color, but continues
to offer it to choose eye color, a test with a reported success rate of 60
percent.31

Once the screening and evaluation is complete, the selected embryo or
embryos are transferred to the woman’s uterus in order to initiate a
pregnancy.32 Less often, the embryo is transferred to the patient’s fallopian
tube in a process called Zygote Intrafallopian Transfer (ZIFT).

The number of embryos transferred depends on a variety of factors,
including the patient’s age. Overall for cycles involving newly-conceived
(not frozen) nondonor embryos, 40 percent involved single embryo transfer,
49 percent two embryo transfer, 9 percent three embryo transfer, 2 percent
four embryo transfer, and 1 percent five or more embryo transfer.33

According to the CDC, the average number of embryos transferred per
patient has decreased dramatically over the past several years. The
percentage of elective single-embryo transfers has simultaneously
increased; from 2007 to 2016 the rate tripled from 12 percent to 40 percent
of all cycles.34 During this time period, the percentage has jumped from 5
percent to 43 percent for women under the age of 35, and from 3 percent to
25 percent for women 35–37 years old. At the same time, the percentage of
transfers of three embryos has dropped from 26 percent to 9 percent.35 As
will be seen in the passages that follow, the number of embryos transferred

has a significant impact on the health and well-being of mothers and
children, and is thus crucial to any reflection on the regulation of assisted
reproductive technology.

Embryos not transferred or discarded due to failed screening are
cryopreserved in freezers. Studies suggest that the vast majority of these
embryos are designated for use in future reproductive cycles. Very few (as a
percentage) are discarded, donated to other patients, or to researchers. Most
remain in cryostorage indefinitely. It has been estimated that one million
human embryos are stored in freezers in the United States.36

There have been several high-profile court cases involving custody
disputes over frozen embryos, usually featuring the ex-spouses who
conceived them. Most often, one ex-spouse seeks to implant the embryos
and bring them to term (either herself or by donation to another fertility
patient), whereas the other wants the embryos destroyed in order to prevent
the birth of children with whom he or she would have a biological
relationship.

In IVF, embryos are most commonly transferred to the recipient’s
uterus to initiate a clinical pregnancy, marked by implantation of the
embryo in the uterine lining.

Pregnancies are monitored closely, and women frequently receive
treatments, including progesterone, to maintain the health of the child-to-be.
In 2016, 27 percent of IVF cycles (and 44 percent of embryo transfers)
resulted in a clinical pregnancy.37 A significant percentage were multi-fetal
pregnancies (21 percent). Among the cycles involving newly-conceived
nondonor embryos, 20 percent of the pregnancies involved twins, and 1.1
percent triplets or more; 73 percent of the pregnancies were singleton.38

Multiple gestation pregnancies, attributable in large part to the practice
of multiple embryo transfer described above, pose greater health risks to
women. As reported by the President’s Council on Bioethics in its 2004
report Reproduction and Responsibility: The Regulation of New
Biotechnologies, potential complications associated with multiple gestation
pregnancies include high blood pressure, anemia, preeclampsia, uterine
rupture, placenta previa, or abruption. Multiple gestation pregnancies are

also more likely to aggravate preexisting health conditions than a singleton
pregnancy.39

According to the CDC’s most recent analysis, 22 percent of IVF cycles
(and 36 percent of embryo transfers) involving newly-conceived nondonor
embryos resulted in a live born child.40 Of the all pregnancies initiated via
IVF, 81 percent resulted in live births. Of these births, 19.4 percent involved
multiple newborns (18.8 percent twins) and 81 percent singleton babies.41

By way of comparison, the overall birth rate of twins in the U.S. during the
same period was 3 percent (one third of which is attributed to fertility
treatments).42 Seventy-seven percent of higher order multiple births in the
U.S. are attributed to ART.43 However, statistics compiled by the CDC
indicate that there is a downward trend in these numbers due to
improvements in IVF and the increased incidence of single-embryo transfer.
“From 2007 through 2016, the percentage of multiple-infant live births
decreased from 35 percent to 20 percent for women younger than age 35,
from 30 percent to 21 percent for women aged 35–37, from 24 percent to 18
percent for women aged 38–40, and from 15 percent to 13 percent for
women aged 41–42.”44

IVF is associated with preterm births (defined as birth before thirty-
seven weeks of pregnancy) and low birthweight (5.5 pounds or less). A
recent study found that IVF increases the risk of preterm birth by 80
percent. The study set the rate of preterm birth from natural pregnancy at
5.5 percent.45 According to the CDC, in 2016 the percentage of cycles
resulting in preterm births for single infants from singleton pregnancies was
11.1 percent (16.7 percent for single babies born after multiple gestation
pregnancies). For twins and higher order multiple newborns, the rates of
preterm birth and low birthweight increase dramatically. The CDC reports
that for twins, 57.6 percent of cycles resulted in preterm birth and 54.4
percent of cycles involved low birthweight. For triplets or more, the
percentages of preterm birth and low birthweight jump, respectively, to 97.2
percent and 87.8 percent.46

Preterm birth and low birthweight are associated with a host of adverse
health outcomes for children. According to the CDC, such children are “at a
greater risk of death in the first year of life, as well as other poor health

outcomes, including visual and hearing problems, intellectual and learning
disabilities, and behavioral and emotional problems throughout life.”47

There has been some concern raised that the use of IVF increases the
incidence of birth defects among children conceived with its aid. The CDC
recently conducted a study of four million infants and found that “singleton
infants conceived using ART were 40 percent more likely to have a
nonchromosomal birth defect (such as cleft lip and / or palate or a
congenital heart defect) compared with all other singleton births.”48 But the
authors of the study caution that more investigation is required, as the
researchers did not control for “some factors related to infertility” that
might account for the increased rate of birth defects.49

Despite the enhanced risks, the rate of birth defects overall is relatively
low. A 2012 study in the New England Journal of Medicine found that the
rate of birth defects for children conceived by ART was 8.3 percent versus
5.8 percent for those conceived naturally.50

The CDC likewise reports that “overall, children conceived using ART
were about two times more likely to be diagnosed with ASD [autism
spectrum disorder] compared to children conceived without ART.” The
reason for this higher rate appears to be linked to increased rate of adverse
ART pregnancy and delivery outcomes that seem to correlate with an ASD
diagnosis, including being born a twin or higher order multiple, preterm
birth, and low birthweight. The CDC has called for more study of the
issue.51

The use of ICSI, which appears to be increasing every year, including
among male patients without male-factor infertility, has been associated
with possible adverse outcomes. A diagnosis of ASD is more common for
children conceived using ICSI than conventional IVF. The CDC reports,
“Findings from some but not all studies suggest that ICSI is associated with
an increased risk of chromosomal abnormalities, autism, intellectual
disabilities, and birth defects compared with conventional IVF.”52 However,
the report cautioned that these risks “may also be due to the effects of
subfertility.”53 For example, if a man who suffers from a particular form of
male factor infertility (associated with low sperm count and a particular Y-
chromosome deletion) is able to successfully fertilize an ovum via ICSI, he

risks passing this chromosomal abnormality on to the child, who, if male,
will likewise be infertile.

SURROGACY

While the issue of surrogacy is vast and complex, and largely beyond the
scope of this chapter, a few brief comments are in order. The CDC reports
that the overall use of gestational surrogates is rare (around 3 percent), but
the incidence has more than doubled over the past decade and a half.54

Between 1999 and 2013, the agency reports that ART cycles involving
gestational surrogates resulted in 13,380 deliveries and the birth of 18,400
babies.55 Intended parents who use gestational carriers are generally older
than those who do not. The majority of gestational carriers are younger than
35.56 ART cycles involving gestational carriers had higher rates of success
than cycles where the intended mother carried the baby, measured by
pregnancies and live births. However, due to the transfer of a greater
number of embryos per cycle (two or more), gestational carrier cycles had
higher rates of multiple births and preterm delivery.57

LEGAL LANDSCAPE

Assisted reproductive techniques are subject to the federal laws regulating
the safety and efficacy of drugs, devices, and biological products, and
preventing the spread of communicable disease. The physicians who work
in ART must be licensed and certified to practice medicine, and are, like all
doctors, subject to the incentives and deterrents of medical malpractice law
and the more general civil and criminal laws of the jurisdictions where they
reside. But as such, the legal landscape of ART is famously and
controversially sparse. The absence of specific and meaningful regulation
of ART in the United States is quite surprising, especially to foreign
observers, given that it is the only medical intervention that ostensibly
results in the creation and birth of a new human being. Moreover, ART is
singular in the world of medicine because it frequently does not aim at
curing the patient’s underlying pathology, but rather at circumventing it.
IVF does not cure infertility, it works around it. Be that as it may, there is

simply not much law dedicated to regulating ART qua ART in the United
States.

The only federal statute specifically dedicated to ART, the Fertility
Clinic Success Rate and Certification Act of 1992 (FCSRCA), is a weak
consumer protection law.58 It does two things. First, it creates a model
program for the certification of embryo laboratories that clinicians are free
to adopt voluntarily if they wish. There is no evidence that this has had any
perceptible effect; in its analysis the President’s Council on Bioethics
reported that not a single embryo laboratory in America had adopted the
model framework offered by the statute.59

The second function of the FCSRCA is to mandate that all clinics in
the United States practicing ART report annually to the CDC certain data
relevant to success rates. CDC contracts with the Society for Assisted
Reproductive Technology (SART)—an ART professional organization
comprised of most clinics in the nation—to validate the information
provided. SART conducts an audit of a small sample of clinics each year to
confirm data reported. The CDC analyzes the data and issues publicly
available reports that include some (though not all) of the information
gathered. It reports success rates (reported both per “cycle,” defined as a
process that starts “when a woman begins taking fertility drugs or having
her ovaries monitored for follicle production,” and per embryo transfer),
type of ART performed, and patient diagnoses of infertility.

The CDC does not, however, report information of crucial relevance to
prospective patients. It includes no information on the types or rate of
adverse health outcomes to mother or child (beyond noting the percentage
of term, normal weight, and singleton births). It does not include any
information regarding the costs of procedures. It does not include
information on the number of human embryos created, frozen, or destroyed.

Some clinicians reported to the President’s Council on Bioethics that
“success rate” as a reporting metric is highly manipulable by unscrupulous
clinics.60 For example, the numbers could be artificially inflated by
accepting only the most promising patients, by terminating and
reclassifying unsuccessful cycles rather than reporting them, and by other
similar tactics.

Most worrisome to critics of the CDC surveillance regime established
by FCSRCA is that there are no serious penalties for noncompliance other
than the publication of the offending clinic’s name in the report itself.
Beyond the listing of these names on the CDC’s website, the FCSRCA has
no enforcement mechanism.

There is an additional federal law that has an incidental effect on ART
research. In 1996, Congress, via an appropriations “rider” (a spending
restriction appended to the annual federal statute that appropriates funding
to government agencies), prohibited federal funding for “the creation of a
human embryo or embryos for research purposes” as well as for research
“in which a human embryo or embryos are destroyed, discarded, or
knowingly subjected to risk of injury or death greater than that allowed for
research on fetuses in utero under” relevant federal regulations on human
subjects protections.61 This law, known as the “Dickey-Wicker” amendment
(named after sponsors Jay Dickey and Roger Wicker) does not limit the
practice of ART, though it does prevent federal funding of ART research
that runs afoul of its criteria.

For the most part, ART is regulated just as any other branch of
medicine, primarily at the state level. The law touches medicine mostly at
the front end, at the point of licensure and certification to practice. The
primary legal tool to regulate the ongoing practice of medicine is the private
law of malpractice. The legal standard for malpractice liability is conduct
that falls below the “standard of care”—the type and level of care of an
ordinary prudent physician, with the same training and experience, under
the same circumstances. The standard is established through expert
testimony regarding the practices of the specialty in question. Plaintiffs can
also sue doctors in tort for misconduct associated with the failure to obtain
proper informed consent. But malpractice litigation is a reactive and ad hoc
form of governance.

There is no systematic mechanism for ongoing regulation and oversight
of the practice of medicine. There is not, for example, any administrative
agency charged with this responsibility. The FDA regulates the drugs,
devices, and biological products used by ART physicians for safety and
efficacy, but does not regulate the practice of medicine itself. It does

administer a statutory framework (established by the Public Health Services
Act) for preventing the spread of communicable diseases. Under these
auspices it promulgates regulations for the screening and use of “Human
Cells, Tissues, and Cellular and Tissue-Based Products.” But FDA has, at
the urging of the ART professional societies and “individuals who facilitate
embryo donation,” carved out very broad exemptions for sperm, egg, and
embryos used in IVF.62

There have been a few notable exceptions to the FDA’s general practice
of non-interference with ART. In 1998, Associate Commissioner of the
FDA Stuart Nightingale issued a “Dear Colleague” letter asserting that the
agency had jurisdiction over any experiment involving cloning to produce a
live born child, presumably under its authority to regulate gene transfer
research. The letter advised researchers that the agency would not approve
such practices, given safety concerns.63 Later in 2001, Kathryn Zoon, a
former head of the agency’s Center for Biologics Evaluation and Research
(CBER), which oversees human gene therapy research64 speculated that if
such concerns over safety and efficacy were resolved, proposed research on
cloning to produce children would be approved.65 FDA’s announcement was
criticized as exceeding the agency’s authority under the statutes it was
created to administer. After the 2001 Zoon statement, the FDA has not
reasserted similar claims of authority. Some commentators have speculated
that the earlier statements by the agency were meant as a bluff to deter
unscrupulous researchers from proceeding; others have suggested that they
were meant to discourage Congress from adopting overly restrictive
legislation disfavored by the scientific community by assuring members
that the agency was in control of the situation.

More recently, Congress adopted an appropriations rider forbidding the
FDA from approving “research in which a human embryo is intentionally
created or modified to include a heritable genetic modification.”66 The
“Aderholt Amendment” (named for its Congressional sponsor Robert
Aderholt) effectively forbids gene editing of embryos as part of IVF
treatment, because such changes would be “heritable” to the future
generations of genetic descendants of the adults these embryos would later
become. The Aderholt Amendment also forbids the various methods of

mitochondrial disease treatment that involve the creation and transfer of an
embryo with the mitochondrial DNA from two women (usually from a
donor and the mother), and the nuclear DNA of the mother and father. Such
embryos are sometimes called “Three Parent Embryos.” Because
mitochondrial DNA is maternally inherited, any female offspring conceived
with the aid of these techniques will likewise pass along the donor
mitochondrial DNA to her genetic children. All female descendants in this
line will likewise pass the genetic change to their offspring.67 The Aderholt
Amendment has been renewed every year since its adoption in 2015.

Putting aside these very atypical examples of FDA involvement in the
practice of medicine, ART proceeds largely unregulated by any
administrative agency. Physicians are thus left free to practice medicine
with a creativity and dynamism that might not be possible with a more
cumbersome, comprehensive regime of ongoing oversight. The deference to
physicians in the law signals the well-earned respect and esteem in which
the profession of medicine is held in American culture. But as applied to
ART, which is sui generis in both its means and ends, this largely laissez
faire framework has been a source of consternation. Novel practices such as
ICSI and PGD move from bench to bedside very rapidly and become
routine in short order. This passage from the President’s Council on
Bioethics report is arresting:

IVF itself was performed on at least 1,200 women before it was
reported to have been performed on chimps, although it had been
extensively investigated in rabbits, hamsters, and mice. The same
is true for ICSI. The reproductive use of ICSI was first introduced
by Belgian researchers in 1992. Two years later, relying on a two-
study review of safety and efficacy, ASRM [the American Society
for Reproductive Medicine] declared ICSI to be a “clinical” rather
than “experimental” procedure. Yet the first non-human primate
conceived was born only in 1997 and the first successful ICSI
procedure in mice was reported in 1995.68

Whereas creativity, dynamism, and an entrepreneurial spirit are highly
valued when medical practice simply aims to restore a patient to health, the
calculus is quite different when the “cure” involves the creation of a new
human being. The background facts of IVF’s exorbitant cost, the market
pressures on clinics to show greater “success” than their competitors, and
the human desperation and vulnerability understandably caused by
infertility all combine to create strong temptations for everyone involved to
push the envelope of innovation when more caution is in order.

STATE COURTS AND ART

The handful of state supreme court opinions dealing directly with ART
involve custody disputes over frozen embryos, usually between former
spouses. There are divergent approaches, with some state supreme courts
(New York, Washington, Colorado, and Tennessee) signaling a willingness
to treat such disputes as straightforward contract cases, applying the terms
of any valid prior agreement that sets forth the procedures for embryo
disposition under the circumstances.69 Other state courts of last resort, such
as Massachusetts, have refused to enforce such agreements, at least when
they appear to require transfer, gestation, and birth against the wishes of one
of the parties.70 Still other state supreme courts, like New Jersey and Iowa,
have refused to enforce prior agreements when parties change their minds
about embryo custody and disposition.71

Despite the disagreement in framing, there are some commonalities
among the decisions of these courts of last resort. First, none of them have
permitted one partner to implant embryos, gestate, and deliver a baby over
the objections of the other.72 Second, none have treated the frozen embryos
as legal persons or children, despite entreaties by one of the parties or the
decision of the lower court. Instead, such courts have either deemed frozen
embryos to have some “intermediate status” between persons and things, or
simply treated them as marital property. Some state courts have explicitly
invoked the U.S. Supreme Court’s abortion jurisprudence to support their
conclusion that the human embryos at issue are not “persons,” despite the
absence of the unique burdens present in pregnancy. Finally, the state
supreme courts have drawn deeply upon the principles of reproductive

liberty, autonomy, and privacy of American abortion jurisprudence as the
touchstone for analysis, and all but one have evinced a strong presumption
for enforcing the wishes of the party seeking to “avoid procreation” and the
unchosen familial relationship with child born as a result.73

In the context of surrogacy, there have been some recent high-profile
examples of disputes between gestational carriers and intended parents.
Two recent instances involved intended parents demanding that the
surrogate abort her pregnancy because the child-to-be was diagnosed in
utero with an adverse but treatable medical condition. In one case, Andrea
Ott-Dahl agreed to be a gestational carrier (and an egg donor) for a lesbian
couple unable to conceive using ART. When a twelve-week ultrasound
revealed that the child-to-be likely had Down Syndrome, the intended
parents demanded that Ott-Dahl terminate the pregnancy. Ott-Dahl refused
and informed the intended parents that she and her wife Keston planned to
keep the baby. The intended parents threatened to sue to try to compel the
termination or seek damages, but ultimately did not.74 In another case, two
intended parents demanded that a surrogate terminate her pregnancy when
the child-to-be was diagnosed in utero with a severe heart defect—
Hypoplastic Left Heart Syndrome (HLHS). HLHS is fatal if untreated.
However, with a surgical intervention it has a survival rate of 70 percent,
though patients may require continued monitoring and care throughout their
lives. The surrogate refused to terminate the pregnancy but reported a great
deal of anxiety when she learned that the intended parents intended to opt
against life-sustaining measures and let the baby die once they assumed
custody of the baby following its birth. In a newspaper interview, the
surrogate reported with relief that the intended parents changed their minds
and sought treatment for the baby.75

There have been other recent cases in which the intended parent or
parents directed the surrogate to abort (“reduce”) one of the multiple fetuses
she was carrying. California resident Melissa Cook contracted to be a
gestational carrier for a fifty-year old deaf and mute single man from
Georgia who lived alone with his elderly parents. When he discovered that
she was carrying triplets, he demanded that she selectively abort one of
them to avoid the costs of raising three children. She refused, and he sued.

Her parental rights were terminated upon birth and custody was awarded to
him. She unsuccessfully sought relief in the California courts and the
United States Supreme Court.76

Gestational carrier (and California resident) Brandyrose Torres read
about the dispute involving Melissa Cook and came forward to tell her story
to the press. She was directed by the intended parents to abort one of the
triplets she was carrying, even though the pregnancy was healthy and none
of the children-to-be were in distress. Torres refused and the intended
parents threatened suit for breach of contract. Ultimately, Torres gave birth
to the triplets and conveyed custody to the intended parents.77

LEGAL OVERSIGHT OF ART QUA ART

The findings of the President’s Council on Bioethics in 2004 regarding the
legal landscape for ART qua ART remain effectively unchanged. To wit,
“there is no uniform, comprehensive, and enforceable system of data
collection, monitoring or oversight for the biotechnologies affecting human
reproduction.”78 Direct governmental regulation of ART is minimal. The
FCSRCA remains a very weak consumer protection law. Most worrisome to
the Council was the absence of a legal framework for comprehensive
research or regulation focused on the possible effects of ART on the health
and well-being of children conceived with its aid, gestational mothers, and
egg donors.79 The Council further observed that in the absence of such
regulation, “novel technologies and practices that are successful move from
the experimental context to clinical practice with relatively little oversight
or deliberation.”80 It noted that PGD is essentially unregulated, with no
comprehensive data gathering on the health impact on children born
following its use, and no limits on its specific applications, including
screening for non-medical criteria such as sex, intelligence, or eye color.
The Council observed that there is no comprehensive, uniform legal
framework or information gathering system regarding the creation, use, and
disposition of human embryos in ART.81 It further noted that “there is no
comprehensive mechanism for regulation of commerce in gametes,
embryos, and assisted reproductive technology services.”82

All of these observations remain true today.

In the absence of comprehensive governmental regulation, the practice
standards and ethical guidelines governing ART doctors are promulgated by
the profession itself—through professional associations and practitioner
societies. Thus, self-regulation is the primary mode of governance for ART.
The primary professional societies who set these standards, the American
Society for Reproductive Medicine and the Society for Assisted
Reproductive Technologies, have been criticized in some quarters
(including by the patient advocacy community) for being too permissive.
Supporters of these organizations retort that the purpose is not to police
members and that a lighter self-regulatory touch is more likely to keep
members aligned with the values of the professional societies. It is very
clear that the core animating normative goods driving the prescriptive
pronouncements of ASRM (which promulgates ethics and practice
guidelines) are patient autonomy and reproductive liberty.

THE ANTHROPOLOGY OF AMERICAN ART LAW

Like the American jurisprudence of abortion, the anthropology of the legal
landscape for ART is expressive individualism. The vision of identity and
flourishing assumed by ART law becomes clear when one considers the
type of liberty that emerges from the absence of meaningful regulation.
From this absence of law arises a very particular kind of freedom, perfectly
suited for the atomized individual will seeking to express the originality
discovered within itself, and to pursue the life plan of its own authentic
design. It is the singular freedom of the unencumbered self, lacking
constitutive attachments and unchosen obligations, for whom relationships
are either transactional or adversarial, but always instrumental. It does not
take embodiment into account, and as anyone who has ever suffered from
or has loved someone suffering from infertility understands, it not the kind
of freedom that responds fully to the pain of those longing for a child, who
feel betrayed by their bodies. Whereas the American law of abortion
responds to the complex crisis of unplanned pregnancy by conferring the
simple and brute liberty to eliminate the nascent human life in utero, the
American law of ART responds to the vulnerability and suffering of
infertility by conferring the freedom to create new life by nearly any means

necessary. These are rules and remedies designed for persons understood
through the imperfect lens of expressive individualism.

A fruitful point of entry into the anthropology of American ART law is
through the writings of the man who was arguably the intellectual godfather
of the United States framework, the late Professor John Robertson.
Robertson, a prolific scholar of the law, was an iconic figure in American
public bioethics for decades, serving on numerous influential governmental
and private sector advisory committees, including an extended term as
Chairman of the American Society for Reproductive Medicine’s Ethics
Committee. Perhaps more than any single person, Robertson’s thought and
work is reflected in the modern American legal framework for ART. To
understand the anthropology of the law of ART, it is important to explore
briefly his conception of human identity and flourishing. Robertson
published numerous essays and scholarly articles until his untimely death in
2017, but the most useful and comprehensive source for understanding his
vision and the current legal landscape is his 1994 book, aptly titled Children
of Choice. The themes and concepts he developed in this work recur
throughout his whole body of scholarship and advocacy, and have become
core animating principles of the current legal paradigm for ART in
America.

Robertson’s normative framework is squarely anchored in the primacy
of “procreative liberty,” which in his words is “first and foremost an
individual interest.”83 He defines procreative liberty as simply “the freedom
to decide whether or not to have offspring.”84 It can often be difficult to
determine when Robertson is describing current law and policy or making a
moral argument, but this difficulty springs in part from the fact that the law
as it currently exists (or, more precisely, the absence of law) broadly mirrors
Robertson’s approach. He roots the right to procreative liberty explicitly in
the Supreme Court jurisprudence of contraception and abortion, styled as
the right to avoid procreation.

From this he infers the converse aspect of procreative liberty, namely,
the freedom to pursue procreation, both coitally and noncoitally. For
Robertson, the right to procreation is a negative right, meaning the

government cannot interfere with its exercise. But it is not a positive right;
the government is not obliged to facilitate its practice.

Procreative liberty is essential to human flourishing according to
Robertson, because it is necessary for self-defining experiences that people
greatly value. Maximal freedom to use reproductive technologies is thus
crucial because “they are the means to achieve or avoid the reproductive
experiences that are central to personal conceptions of meaning and
identity.”85 Restrictions on the freedom to avoid procreation unjustly
“determine one’s self-definition in its most basic sense,” whereas limits on
the pursuit of procreation through one’s chosen means “prevents one from
an experience that is central to individual identity and meaning in life.”86

Accordingly, the rights of procreative liberty should be jealously guarded
and walled off from state interference except for the most compelling
reasons, which Robertson suggests are “seldom” present.87

Framed as an operational legal standard to govern conflicts in this
domain, Robertson argues that “procreative liberty should enjoy
presumptive primacy when conflicts about its exercise arise because control
over whether one reproduces or not is central to personal identity, to dignity,
and to the meaning of one’s life.”88 Those who would restrict procreative
liberty always bear the burden of demonstrating that it is necessary to
prevent “substantial harms to the tangible interests of others.”89

But what kinds of practices fall within the scope of procreative liberty?
Here again, Robertson defines the field of protected activities according to
their subjective value to the individual involved. “A person’s capacity to
find significance in reproduction should determine whether one holds the
presumptive right.”90

Even the discrete, isolated actions of gamete donation or gestation
without any intent to parent the child born can offer highly valuable and
meaningful experiences to donors and gestational carriers. Accordingly,
they should be protected from state interference.

When presented with a particular application of reproductive
technology, Robertson asks whether the activity is “so central to an
individual’s procreative identity or life plan” that it deserves protection
under the aegis of procreative liberty.91

What about screening embryos for preferred traits or conditions?
According to Robertson, “Some degree of quality control would seem
logically to fall within the realm of procreative liberty.”92 At points in his
writings, Robertson seems to entertain the possibility that certain practices
that fall outside the mainstream and to which most people would not ascribe
value (for example, genetic enhancement) might lie beyond the scope of
procreative liberty, but he always stops short of categorically ruling them
out. It is difficult to see how his larger normative framework of maximal
procreative liberty would allow such restrictions in the absence of serious
harms to others.

What kinds of harms are sufficient for Robertson to curtail procreative
freedom? Use and destruction of in vitro embryos do not constitute
sufficient harms to restrict procreative liberty. Robertson rules out the
possibility that they are “persons,” but seems to suggest that they should be
respected insofar as they have the potential to become a person (if they are
transferred, gestated and born), and because of the “symbolic meaning”
they hold for “many people.”93 But these interests are easily outweighed in
the face of an individual’s desire to procreate. Robertson also holds that the
fetus in utero is likewise not a person, and therefore may be destroyed to
vindicate the right of a pregnant woman not to procreate. He states
explicitly that in his view, no one has the right to be born.94

What about harms to children later born who are injured by the ART
techniques from which they are conceived? Or harms to such children
caused by their genetic parents’ underlying pathologies that required the use
of ART to conceive in the first place? For Robertson, it turns out that in
almost every instance, such harms are also not sufficient to justify
restrictions on procreative liberty. In fact, he does not recognize injuries
caused by IVF and adjunct techniques to be a “harm,” rightly understood.
In support of this proposition, Robertson invokes philosopher Derek Parfit’s
“non-identity problem,” which holds that if a person is harmed by the very
intervention that made his existence possible (such as ICSI), and the only
way to prevent such harms is not to use this intervention at all, then such a
restriction is not a benefit to the person, because he would not otherwise
exist.95 Moreover, because his life in the injured state is not worse than

nonexistence, the use of the harmful technique is, in fact, a benefit to him.
Following this reasoning, Robertson concludes that for children harmed by
such techniques, “ARTs to enable their birth does not harm them and does
not justify restriction on those grounds.”96

Turning to concrete cases, Robertson applies this principle to the risk of
birth defects from ICSI and concludes that children born with these
afflictions would not be “harmed,” because the alternative future for them is
nonexistence.97 Thus, restrictions on ICSI to prevent birth defects in
children are not justifiable restrictions on procreative liberty. For the same
reasons, Robertson expresses opposition to bans on the transfer of multiple
embryos to prevent harms associated with preterm birth and low
birthweight. He likewise opposes bans on novel forms of procreation
including the use of gametes derived from stem cells or fetuses, genetic
manipulation of embryos, or even cloning to produce a live born child, if
the reason for such bans is to protect the well-being of the child born as a
result. He does not regard such harm as cognizable. If the freedom to pursue
these modes of producing children is to be limited, it must be justified on
other grounds. Robertson is doubtful that alternative rationales for bans or
restrictions would be compelling.

Robertson does allow the possibility that some intentions of parents, if
they do not entail the desire to rear the child, might put the enterprise
outside the domain of “procreative liberty.” And he notes that state interests
(other than preventing harm to children—which he does not recognize)
“might” warrant regulation when parents’ aims are far afield of “traditional
reproductive goals.”98 But in making this allowance, it is once again not
clear if Robertson is describing the law as it is or as it should be. Moreover,
it is difficult to reconcile this solicitude for “traditional reproductive goals”
in light of the almost unalloyed libertarian orientation of Robertson’s
approach.

Surveying the current American legal landscape for ART, it is more or
less John Robertson’s world. His views have not been constitutionalized by
the Supreme Court, but the absence of meaningful, comprehensive
regulation and oversight of ART creates conditions that closely approximate
his vision of “procreative liberty.” There are no legal limitations specific to

ART meant to protect the health and well-being of children born with its
aid. There are no legal restrictions on techniques that are routinely used that
result in a massive increase in risk of preterm births and low birthweight,
with associated adverse health consequences for such children. There is no
regulation or even federally sponsored longitudinal study of commonly
used interventions that appear to increase the risk of birth defects, autism,
and other maladies. Parents, including those who are not infertile, freely use
PGD to select the sex of their children by transferring preferred embryos
and discarding others. Parents use PGD to screen and discard those
embryos who have a higher probability of contracting treatable diseases that
do not appear until later in life. Organizations advertise predictive testing
for low intelligence, with the promise of developing tests for predicting
high intelligence in the near term. People screen embryos for eye and hair
color. People buy and sell sperm, eggs, and even “batches” of embryos.
Intended parents who contract with gestational carriers sometimes demand
the abortion of children-to-be with adverse but treatable medical conditions,
threatening lawsuits and the withdrawal of financial support. There are a
million human embryos stored in freezers as a result of the absence of
comprehensive and uniform laws governing their creation, use, and
disposition.

All of these practices are legal and unrestricted, creating a domain of
free choice and private ordering that replicates Robertson’s vison of
procreative liberty. And, with Robertson’s work as an interpretive guide, it
is clear that this particular conception of liberty is firmly rooted in the
anthropology of expressive individualism. As Robertson states explicitly,
this liberty is meant to serve individuals in their quest to pursue
reproductive experiences that they highly value as meaningful and essential
to self-definition. Human bodies at all stages from embryonic to adult are
recruited as instrumentalities of these personal projects. In some cases, the
body and its parts are explicitly reduced to articles of commerce. People
enter and exit intimate procreative relationships marked by contract and
bargained-for exchange. Parental relationships, be they genetic or
gestational, are created, avoided, and dissolved through will, choice, and
rational ordering. Procreative liberty thus understood alters the role of

physician from servant of health and wholeness to a skilled technician
enabling the projects of the will. Thus “health” itself is transformed from a
concept connected to the natural functioning of the organism to one nested
in will and desire.

This notion of procreative liberty, following its anthropological
foundation of expressive individualism, reorients the purposes of
reproduction from the aim of bringing about the birth of one’s child to the
satisfaction the self-defining goals of the individuals involved. This
transformation of purpose was evident in the 2002 comment of Dr. Gerald
Schatten in his testimony to the President’s Council on Bioethics:
“Reproductive medicine is helping prospective parents realize their own
dreams for a disease free legacy.”99 But the version of procreative liberty
nested in expressive individualism that arises from the American legal
landscape of ART encompasses dreams of more than just a disease-free
legacy. It includes a legacy free from a much broader array of imperfection,
including even the presence of children of a disfavored sex.

And like all legal frameworks built upon expressive individualism, the
current regime is blind to the vulnerability, dependence, and fragility that
inexorably attends an embodied life. The American law of ART does not
consider the vulnerable and dependent child-to-be in the calculus of
interests to be protected and harms to be avoided. Along with John
Robertson, American law does not count prevention of harms to children
caused by the ART interventions by which they were conceived as grounds
for restricting procreative liberty. The law is designed to serve the desires of
those seeking to reproduce, despite the risks to the health of the child-to-be
discussed above. It likewise fails to adequately protect the health and well-
being of the genetic or gestational mothers.

Even evaluated according to the metrics of the law’s own aspiration for
consumer protection, it does not sufficiently protect ART patients (clients?)
—men and women who are profoundly vulnerable by virtue of the deep
sadness, exhaustion, and desperation caused by infertility, along with the
potentially ruinous financial costs of pursuing treatment for it. The law does
nothing to aid their moral imagination—nothing to help them to see the
child-to-be at every step of the process as a gift to be treasured and

protected. It does nothing to protect them from themselves and the
temptation to undertake serious risks to their future child’s health and well-
being, not to mention their own. The law does not protect patients from
making dehumanizing and discriminatory choices like sex selection in
bringing their children into the world. The law indulges intolerance of
imperfection by allowing unfettered screening for all manner of “flaws.”
The law fails to teach against the destructive notion that the parent-child
relationship is defined by will, control, and mastery rather than
unconditional love and gratitude.

And the law as presently constituted does nothing to prevent the
community from coarsening and coming to see the entire enterprise not as
medically-aided conception and birth of children to be welcomed and loved
unconditionally, but rather as a form of manufacture of products subject to
quality assurance, and accepted or rejected according to their conformity
with the preferences and desires of the “customer” who paid for it.

Here again, the perils of a public bioethics rooted in expressive
individualism become apparent. The law is blind to the weak, vulnerable,
fragile, and dependent, and all interests and concerns are crowded out by
the law’s focus on the desires of the individual will seeking its own way.

ANTHROPOLOGICAL CORRECTIVE FOR PUBLIC BIOETHICS OF ART

But the law’s vision of procreative liberty is not the freedom that patients
seeking infertility treatment in the real world want or need. They are not
unencumbered selves, but people who are desperately seeking to embrace a
role that is defined by a relationship; they want to be a parent. And there is
no such thing as a parent without a child. Despite the weariness, sadness,
and even bitterness that comes with experiencing infertility as a betrayal by
one’s own body, they do not pursue ART to realize any dream of a
particular legacy or to assert their atomized will, but to be a mother or a
father.

Accordingly, for the public bioethics of ART to respond to their
neediness, promote their flourishing, and to protect them and their children
from harm (even arising from their own choices), it must begin with the
meaning and consequences of embodiment.

Accordingly, just as in the context of abortion, the task for the law is to
support, protect, and sustain the networks of uncalculated giving and
graceful receiving necessary to respond to the neediness of the vulnerable
and dependent, and through which embodied beings come to realize their
potential as the kind of persons who are able to make the goods of others
their own. By virtue of our individual and shared lives as embodied beings,
human flourishing is most profoundly achieved through love and
friendship. Of course, where such networks of shared sacrifice and support
are missing or become frayed, the law must step in to protect the
vulnerable, weak, and marginalized.

More concretely, just as in the context of abortion, the normative
paradigm most fitting to the public bioethics of assisted reproduction is
parenthood. Assisted reproduction, like all reproduction, involves parents
and children. The complexity that arises from advances in the medicine and
biotechnology of ART does not change this fact, even as it fractures the
previously integrated dimensions of procreation. Because of IVF and
related techniques and practices, there is the potential for many mothers and
fathers—genetic, gestational, and rearing. But all are mothers and fathers
just the same, albeit in different respects. They are made so by the fact that
they are engaged in the business of making and raising babies.

Thus understood, the networks of giving and receiving to which the
law should respond are those proper to parenthood, which includes, of
course, parents and children, but radiates outward to the physicians and
health care providers who serve them, extended family members,
neighbors, community, and polity (including the government itself), all of
whom are reciprocally obliged and entitled to render and receive mutual
aid.

An anthropology of embodiment and laws built upon it recognizes that
the most vulnerable protagonist of procreation is the child. She depends on
the uncalculated giving of her parents—of every sort—who will make her
good their own as they engage in whatever role they might play in her life.
By virtue of their relationship to her, the genetic, gestational, and rearing
parents must act in her best interests, and must make every effort to protect
her from harm, at every stage of her development from conception forward.

More deeply, her parents—all of them—must understand that she is a gift, a
person who has been conceived, not a product manufactured to serve the
desires of another. The proper disposition toward a gift is gratitude and
humility, not mastery and exploitation. She was not selected to meet
anyone’s specifications but emerged from a procreative process possessed
of intrinsic and equal dignity. Her “imperfections” or “flaws” are of no
consequence, except insofar as they are occasions for unconditional care
and support. Doubtless, to see her as she is at every stage of her life from
conception forward requires moral imagination. And to honor unchosen
obligations to her requires restraint, discipline, and sacrifice. But such is the
relationship of parent to child.

Parenting thus requires the virtues of uncalculated giving—just
generosity, hospitality, and, when necessary, accompanying the child in
suffering as if it were one’s own (misericordia). This means subordinating
one’s desires for the sake of one’s child—giving without concern for
receiving, in proportion to neediness. It also requires the virtue of gracefully
receiving the child who is a gift. This includes gratitude for the child,
humility (rather than the hubris of rational mastery), and openness to the
unbidden and tolerance of imperfection (rather than the drive to weed out
flaws).

The law, then, must support and sustain parents, regardless of type, in
discharging these obligations. It must facilitate the understanding and
practice of these virtues of parenthood. How and by what means the law
might most successfully enable this mindset and the goods and virtues that
follow from it are highly complicated questions requiring consideration of
factors well beyond the current inquiry. There are many means—passive
and active—that could be deployed to this end. But the law must begin by
expanding its anthropological foundation to encompass the meaning and
consequences of embodiment. Concretely, the law must offer support,
directly and indirectly, for parents of all sorts in fulfilling their duties to
children, whom they have a role in conceiving, gestating, and rearing.

Where parents and others fail to meet their obligations to the children,
the law must intervene to protect them directly. Again, what this might
mean concretely is a large question for another time, but at a minimum,

certain principles are clear enough. The law must closely regulate or
perhaps even prohibit medical interventions that foreseeably endanger the
health and well-being of children conceived with the aid of ARTs. To this
end, the government must conduct rigorous longitudinal studies on the
impact of ARTs on the flourishing of children, broadly understood. Whether
the harm to children is caused by the ART itself, or by the underlying
pathology of the infertile parent, the ultimate focus of the law should be on
protecting the health and flourishing of children.

Obvious areas of concern are practices that contribute to low
birthweight and preterm birth, increased rate of birth defects, as well as the
harms wrought by discriminatory and dehumanizing practices such as sex
selection, screening for disfavored traits, intolerance of the imperfect and
disabled, and the commodification of the body and its parts.100 States could
consider moratoria or bans on practices shown to be harmful.

Moreover, the law must be devised to secure the intrinsic equal dignity
of children conceived by ART, and to avoid the risk that others will regard
them as unequal and inferior to their “creators” because of how and why
they came into the world. They are not creatures devised in a lab to fulfill
the dreams of others. They are, in the words of Gil Meilaender, “begotten
and not made.”101

And it may go without saying, but the most fundamental goal of the
law in this domain is to ensure that every child born with the aid of ART is
received and raised as a son or daughter in a loving family: the network of
uncalculated giving and graceful receiving par excellence.

Reorienting the purposes of ART regulation toward the well-being of
the child will likewise have consequences for how medicine is practiced.
From the outset, measures taken must account for the downstream effects
on the child-to-be’s health and flourishing. In fact, given that the successful
culmination of the enterprise is the birth of a child, practitioners would do
well to think of the child-to-be as a patient in her own right, and make
choices with this in mind, even during the preconception stages of the
process. Again, how the law might contribute to shaping and directing these
behaviors is a complex question for another time.

Vulnerability and exploitation are possible at all stages of the ART
process. It is the obligation of the community and the polity to protect these
individuals, perhaps even from their own self-destructive decisions or
misguided choices that harm the children who are born with their
assistance. Areas of concern include the exploitation of gamete donors and
gestational surrogates, the commodification of the body and its parts, and
the use of IVF techniques and interventions that bear significant risks for
the women involved. Developing concrete legal structures responsive to
these concerns will, of course, require careful study, reflection, and
prudence across a wide spectrum of factors. But the goals, at least, are clear.

The networks of giving and receiving necessary to support the
dependent and vulnerable in this context do not merely encompass the
parents, children, and health care providers involved, but radiate outward to
extended family, community, and polity. The law must have a role in
strengthening these bonds and promoting the reciprocal rendering and
receiving of care.

It is important to address yet another vulnerable and dependent
population that is centrally involved in and affected by the lack of
meaningful regulation of ART as such in America, namely, the living
human embryos who are conceived, cultured, screened, transferred,
intentionally destroyed, donated to other patients, sold in “batches,” given
to scientists for use and destruction in research, or most often, frozen
indefinitely. The moral status of the human embryo is a central question of
public bioethics and has been since its inception. The public question has
been addressed by government advisory commissions, state legislatures,
state courts, administrative agencies, Congress, multiple presidents, and
several different intergovernmental bodies including the United Nations,
UNESCO, and the Council of Europe.

For present purposes, the narrow question is what (or who), exactly, is
the embryo in the context of ART? For commentators like John Robertson
and like-minded advocates of maximal procreative liberty, they are not
persons, despite their biological status as living organisms of the human
species. For some, they are simply raw biological materials to be used and
discarded with impunity; for others they have an “intermediate status”

warranting “special respect,” which precludes their use and destruction
except in compelling circumstances (though this turns out to be a very
broad category in practice).

The arguments against the personhood of the living human embryo
track the abortion debate somewhat, though the context is distinguishable,
as there are no burdens of unplanned pregnancy at issue. Some argue (like
Tooley and Warren) that embryos are not persons because they are not yet
capable of preferred capacities such as cognition, self-awareness, the
formulation of desires, and the creation of future directed plans.102

Others argue that embryos that are slated for destruction or indefinite
cryostorage are not persons because they will never develop these preferred
capacities as they will never enter an environment (namely, the womb) that
would support such development. Still others argue that all IVF embryos
are not persons based on the assertion that they are incredibly fragile and
that most will die of natural causes (“natural embryo loss”) before they
develop the preferred capacities of personhood. Some argue that they are
not persons because they are very small—“a tiny clump of cells no bigger
than the period at the end of this sentence.”103 Others assert that they are not
yet persons because they are not, in fact, human beings at all but merely “an
undifferentiated ball of cells.”104 Finally, there are those who argue that IVF
embryos are not persons prior to the formation of the “primitive streak”—a
biological structure that appears around 14 days of development that is the
precursor to the nervous system, after which the phenomenon of
monozygotic “twinning” is thought to be no longer possible. For such
advocates, the primitive streak signals the rudiments of the brain and spinal
cord—essential to the cognitive functioning associated with their
conception of personhood—and guarantees that the human organism is a
stable individual who will not divide into multiple individuals. These
arguments are sometimes made individually, sometimes in combination.

As discussed in the previous chapter, an anthropology of embodiment
construes the biological origins, structure, and function of the embryo
differently. It begins with a posture of great skepticism toward arguments
that make “personhood” contingent upon a being’s achievement of certain
milestones established by others relating to size, strength, cognition, and

dependence. This skepticism grows when those setting forth such criteria
for personhood are strongly motivated by the desire to use or destroy the
being whose moral status they seek to evaluate. Such decisionmakers have
a vested interest in a finding of non-personhood; if embryos are not persons,
then they are available for recruitment into the projects of others without
serious concern for their interests or well-being.

Viewed through the anthropology of embodiment, none of the
arguments for IVF embryo non-personhood are persuasive. All human
beings, because of their embodiment, exist on a “scale of disability,” with
their powers waxing and waning according to age, health, and
circumstance. As discussed in the last chapter, living members of the human
species need not meet tests for cognitive capacity or possess the abilities of
self-reflection and expression necessary to flourish as prescribed by the
anthropology of expressive individualism. The vulnerability and
dependence of the embryonic human being on others to supply a nurturing
environment to support her life and further development (namely, her
gestational mother’s womb) is no warrant to declare her a non-person
available for use or destruction. To the contrary, her vulnerability and
dependence—like all human vulnerability and dependence—are a summons
for care, concern, and protection. Nor is her small size or fragility a license
to treat her as a non-person. The claim that a high rate of embryo demise
prior to implantation and birth diminishes the moral worth of embryos is a
non sequitur; the same logic would lead to the false conclusion that a high
infant mortality rate reduces the moral value of babies in utero. In any
event, the rate of pregnancies initiated per transfer in IVF is quite high—45
percent for nonfrozen embryos and 56 percent for frozen embryos. The
overall rate of IVF pregnancies resulting in birth is 81 percent.105

Similarly, the claim that IVF embryos are “undifferentiated balls of
cells” does not accurately reflect their status as living organisms,
biologically or morally. An “organism” is an individual, whole living being
composed of parts that function in a coordinated manner to support growth
and development of the entity along a species-specific trajectory. Under this
definition, the IVF embryo screened and transferred, discarded, or
cryogenically stored is manifestly an organism. There is some debate

among embryologists about when exactly differentiation and coordination
among the component parts of the embryo occur (for example, within
moments following sperm-egg fusion or when the maternal and paternal
pro-nuclei fuse at syngamy approximately twenty-four hours later). Despite
this uncertainty, there is clear evidence of internally directed, coordinated
activity from days one to six, relevant to enabling implantation and further
development of the embryo.106 By virtue of its structure, function, and
composition, the IVF embryo is a living human organism.

Similarly, the capacity for embryo twinning does not undermine the
embryo’s status as an individual living human organism. In rare instances
(0.4 percent of births in natural reproduction, and two to twelve times
higher in IVF), some portion of the cells of an embryo will split off from
the whole, and resolve itself into a new, genetically identical “twin.”107

Some point to this unique capacity for regulation and restitution following
developmental disruption as evidence that the embryo is not yet
“individuated.” But this is not persuasive, given that indivisibility is not
necessary for individuation in an organism. The individual flatworm has the
bodily resilience to survive similar disruptions, with its severed parts
sometimes resolving into a new organism. So too with the human embryo at
early stages of development. Its resilience is not surprising given the
plasticity of its component parts, which give rise to all the tissue types and
structures of the mature body. But despite such plasticity, in the absence of
disruption, such parts function as a coordinated, integrated whole. In short,
as an individual organism.

From the perspective of an anthropology of embodiment, discussing
the human organism at this stage as “the embryo” fails to capture its
essential identity. This nomenclature trades in the notion of atomization and
isolation of expressive individualism. It is not “the embryo,” but the
particular human offspring of specific genetic parents. This embryonic
human being emerges from the process of fertilization already embedded in
a web of relationships, most notably involving his or her biological
progenitors—his or her parents. An anthropology of embodiment is mindful
of this connectivity and the obligations and privileges that flow from it that
comprise one dimension of the network of giving and receiving necessary

to human life and flourishing. The relationship of genetic progenitors to the
given embryonic human being conceived is, normatively speaking, that of
parent and child. It would take more discussion and reflection to do justice
to the richness of this relationship and to unfold the contours of obligation
and privilege within this network, but at a minimum, the genetic parents
have an obligation to protect and promote the flourishing of their embryonic
child. How they might discharge this obligation also requires a great deal
more thought and discussion, but the end point of any such pathway of care
would have to be the birth of a child who has a place of belonging as a
genuine son or daughter in a family that loves him or her unconditionally.

The role of the law is to facilitate this end—to help genetic parents to
cultivate their moral imaginations so as to see their child in the embryo in
the dish, and to understand their obligations as parents. Should the parents
fail in this regard, the law must intervene to do what the parents cannot or
will not do—seek a resolution where this embryonic human being
ultimately finds a place of unconditional belonging as a son or daughter in a
loving family. How the law can accomplish this aspiration, and what kinds
of regulatory mechanisms are fitting and appropriate to this end, are a
matter for future consideration.

The conclusion as a matter of principle is that embryonic human
beings, as embodied living members of the species, must be included in the
network of giving and receiving on which all human beings depend for their
survival and their flourishing. Their good must be counted as part of the
common good, and their vulnerability and dependence are a warrant for
protection and support, just as with any other living member of the human
family.

How the law might concretely accomplish this end, which of the
myriad passive and active tools it should deploy toward these purposes, and
what the practice of ART might look like under this new regime are all
matters for a future inquiry. One place to start would be to study the rare
laws in the United States and abroad that offer protection to all participants
in ART through the lens of children and parents. For example, a Louisiana
statute declares such embryonic human beings to be “juridical persons,”
with the attendant privileges and protections owed to such a status.108 It

would be worth knowing whether such a law successfully engenders the
understanding that assisted reproduction is a domain of parents and children
at all stages of the process. Similar provisions designed to protect parents—
genetic, gestational, and rearing—would likewise be worth exploring.
These are inquiries for another time, but they must be pursued if the public
bioethics of ART is to be responsive to the full range of needs and wants of
the embodied beings whose lives are touched by it.

5

Death and Dying

Our discussion so far has focused on the public bioethics concerning the
beginning of life. Now, the inquiry shifts to life’s other margin, namely, the
public bioethics of death and dying. While there are myriad points of entry
into this area of the law, including the definition of death, organ donation,
and medical futility, the analysis that follows will focus on two fundamental
public questions of perennial and crucial import to the law of end-of-life
decision-making: refusal or discontinuation of life-sustaining measures, and
assisted suicide. As in earlier discussions, there is a need for an
anthropological augmentation to the law’s foundations in these matters, for
more humane, just, and fully human governance.

Before proceeding with the analysis, it is necessary first to define some
basic terms for these related but ethically and legally distinct domains. First,
“the refusal or termination of life-sustaining measures” refers to a decision
to decline or discontinue a medical intervention necessary to preserve one’s
life. The decision can be made by the patient herself, or by a proxy
decisionmaker on her behalf in the event that she is not or has never been
competent to do so. The reasons for doing so may vary. Some patients
decline or discontinue life-sustaining measures because they regard the
medical interventions at issue as unduly burdensome or futile. Others may
do so specifically in order to hasten their own death. These motives are
different, even if the result of the decision is the same. In the first case, the
patient is choosing against an unwanted treatment with the foreseeable
(though perhaps regrettable) consequence of an earlier death. In the second
case, the patient is making a choice for the express purpose of hastening

dying, perhaps because she judges her current or near-future quality of life
as unbearable. As will be discussed at more length below, regardless of
one’s motives, it is legal in every state in the United States for a patient to
decline or discontinue life-sustaining measures.

Second, “physician-assisted suicide,” as practiced in the United States,
is the intentional taking of one’s own life through the self-administration of
a lethal drug, prescribed by a physician for these purposes. It is currently
legal in ten U.S. jurisdictions (nine states and the District of Columbia).

Euthanasia is the direct and intentional killing of a patient by a third
party either based on his request or in the name of his best interests.
“Voluntary euthanasia” is the intentional killing of a patient upon his
request. “Non-voluntary euthanasia” is the killing of a patient in the
absence of any request, on the grounds that it is in the patient’s best
interests. “Involuntary euthanasia” is the direct killing of a patient over his
objections, overriding his preferences in the name of a perceived greater
good. All forms of euthanasia are illegal in the United States.

Termination of life-sustaining measures, physician-assisted suicide, and
euthanasia are all distinguishable ethically and legally from the aggressive
use of palliative techniques, such as the administration of powerful pain
medications that carry a serious risk of death for the patient. In such
treatment, the purpose of the clinician is to relieve the pain and suffering of
a living patient through the use of potentially dangerous pain management
techniques and the dosage is adjusted solely to achieve this goal; the aim is
not to hasten his death.

THE REFUSAL OR TERMINATION OF LIFE-SUSTAINING MEASURES

In Cruzan v. Director, Missouri Department of Health, the Supreme Court
(quoting a prior case) noted that “No right is held more sacred, or is more
carefully guarded, by the common law, than the right of every individual to
the possession and control of his own person, free from all restraint or
interference of others, unless by clear and unquestionable authority of law.”
In the United States, the law governing the decision to decline or
discontinue unwanted medical care (including life-sustaining measures) is
generally set forth by the statutes and judicial decisions of the individual

states. It is rooted in the common law of battery, which forbids unwanted
touching by others. Upon this foundation, the law of informed consent was
erected as an additional protection for bodily integrity, specifically in the
context of medical care. As the Supreme Court observed in Cruzan, “the
logical corollary of the doctrine of informed consent is that the patient
generally possesses the right not to consent, that is, to refuse treatment.”1

The first case involving the termination of life-sustaining measures was In
re Quinlan, in 1976.2 In that case, the Supreme Court of New Jersey
declared that there was a right to discontinue such treatment based on the
same right to privacy discerned in the United States Constitution by the
Supreme Court in Griswold v. Connecticut and Roe v. Wade.3

Since then, numerous state courts have recognized the same right to
refuse unwanted treatment, grounding it in the common law of informed
consent alone, or in combination with a right to privacy or self-
determination.

In Cruzan, following a discussion of the common law right to refusal,
the Supreme Court observed, in a conspicuous and atypical use of the
passive voice, that “[t]he principle that a competent person has a
constitutionally protected liberty interest in refusing unwanted medical
treatment may be inferred from our prior decisions.”4 Turning to the
question of whether this “liberty interest” extends to refusal of artificial
nutrition and hydration, the Court again responded with a somewhat
qualified reply that “for purposes of this case, we assume that the United
States Constitution would grant a competent person a constitutionally
protected right to refuse lifesaving hydration and nutrition.”5

Whether grounded in a constitutional liberty interest or the common
law of informed consent, in every jurisdiction in the United States it is
lawful for a competent patient to decline or discontinue unwanted medical
care, including life-sustaining measures. The principle normative
justification is to protect the autonomy and self-determination of patients of
sound mind. This legal framework is not controversial as applied to such
individuals.

Difficulties arise, however, when these legal principles are applied to
patients who are not capable of making decisions for themselves. This was

the context of In re Quinlan, involving a young woman in a “persistent
vegetative state,” a phrase coined in 1972 by Jennett and Plum to describe
“a state of wakefulness without detectable awareness.”6 A Multi-Society
Task Force convened in 1994 to study the matter reported that “the
distinguishing feature of the vegetative state is an irregular but cyclic state
of circadian sleeping and waking unaccompanied by any behaviorally
detectable expression of self-awareness, specific recognition of external
stimuli, or consistent evidence of attention or intention or learned
responses.”7 Such patients may move, smile, cry, moan, or scream, but these
actions are, according to the diagnosis, not purposeful or evidence of
psychological awareness. Patients in a persistent vegetative state are thus
unable to make treatment decisions on their own behalf.

In Quinlan, the Supreme Court of New Jersey held that the patient’s
right to privacy (which includes the freedom to decline unwanted life-
sustaining measures) should not be extinguished simply because of
cognitive disability.8 The Court allowed the patient’s father, acting as
guardian, to make a decision on her behalf that, in his best judgment, she
would have made for herself if she were able to do so. Accordingly, it
authorized her father to direct the withdrawal of her ventilator, subject to
confirmation by the physician and hospital ethics committee that Karen
Quinlan had no hope of being restored to a “cognitive, sapient state.”9

Ventilation was discontinued, but to the surprise of everyone, Karen Ann
Quinlan continued to breathe on her own and survived another ten years.10

Since Quinlan, in jurisdictions throughout the United States, courts and
state legislatures have embraced the notion that the right to decline life-
sustaining measures can be exercised on behalf of patients who no longer
have the capacity to decide for themselves. While the details of the laws
vary somewhat, the common thread is that the patient’s actual prior wishes,
if discernable, are paramount. If there is decisive written or oral evidence
that expresses the patient’s preferences for the circumstances at issue, then
they are to be implemented. Courts also allow for proxy decisionmakers,
under the auspices of a “substituted judgment” standard to make a decision
about what the patient would have wanted based on his expressed wishes,
values and opinions, and any other evidence indicating what treatment he

would choose or decline under the circumstances. Because the goal is to
vindicate the patient’s autonomy and self-determination, this is meant to be
a purely subjective inquiry. As one Florida state court explained:

One does not exercise another’s right of self-determination or
fulfill that person’s right of privacy by making a decision which
the state, the family, or public opinion would prefer. The surrogate
decision-maker must be confident that he or she can and is voicing
the patient’s decision.11

In the interest of ensuring that the preferences implemented are truly
those of the patient, and to avoid possible fraud, mistake, or abuse, many
jurisdictions require those seeking to terminate life-sustaining measures for
incompetent patients to prove by “clear and convincing evidence” that this
is what the patient wanted under the circumstances. This is the highest
standard of proof in American civil law and is tantamount to “beyond a
reasonable doubt” in the criminal context. The Supreme Court held in
Cruzan that such a requirement does not violate the incompetent patient’s
constitutionally protected liberty interest in declining unwanted life-
sustaining measures.12

If it proves impossible to determine what the patient’s actual wishes
were prior to losing the capacity to decide for himself, some jurisdictions
allow for treatment decisions to be made according to a “best interests”
standard. Unlike the “substituted judgment” approach, which is meant to be
subjective and entirely tailored to the patient’s preferences, the “best
interests” standard is meant to be objective, implementing what a
reasonable person would choose under the circumstances. If there is any
probative evidence of the patient’s preferences, it is incorporated into the
calculus. If not, the decision is made by weighing benefits and burdens
under a reasonableness standard. For example, in the absence of any
evidence of the patient’s wishes, the New Jersey Supreme Court in In re
Conroy proposed a “pure-objective standard,” under which life-sustaining
measures should be terminated when it is demonstrated that “the net
burdens of the patient’s life with the treatment … clearly and markedly

outweigh the benefits that the patient derives from life,” and the patient is
subject to “recurring, unavoidable and severe pain” rendering the
continuation of life sustaining treatment “inhumane.”13

Similarly, the President’s Commission for the Study of Ethical
Problems in Medicine and Biomedical and Behavioral Research suggested
the following framework for discerning “best interests” in this context:

In assessing whether a procedure or course of treatment would be
in a patient’s best interests, the surrogate must take into account
such factors as the relief of suffering, the preservation or
restoration of functioning, and the quality as well as the extent of
life sustained. An accurate assessment will encompass
consideration of the satisfaction of present desires, the
opportunities for future satisfaction, and the possibility of
developing or regaining the capacity for self-determination.14

Under both the “substituted judgment” and “best interests” standards, if
the party seeking to discontinue life-sustaining measures fails in its burden
of proof, such treatment is continued for the incompetent patient.

In actual clinical practice, nearly all decisions regarding life-sustaining
measures are made by families in private deliberation and are never subject
to litigation and the publicity that comes with it. It is only in the rare
instance where family members or caregivers disagree so strongly that they
seek a resolution through the courts and the court of public opinion.
Nevertheless, worries about such disputes over life sustaining measures
have motivated a widespread public campaign to encourage people to
memorialize their treatment preferences in legal instruments to be used to
govern their medical care in the event of their future incompetence.

Now every state has laws providing for the creation of some form of
“advance directive,” meant to guide life-sustaining treatment decisions after
the individual loses the capacity to do so, and likewise to excuse health care
providers who follow such directives from legal liability. In 1990, Congress
passed the Patient Self-Determination Act (PSDA), requiring health care
facilities that receive Medicare or Medicaid funds to give patients under

their care information about advance directives deemed valid under state
law.15 If such patients have an advance directive, this must be noted in their
medical records. These advance directives can take a variety of forms.
Instruction directives are written or oral declarations about future treatment
preferences, including end-of-life decision-making. A proxy directive (often
called a health care power of attorney) designates a person who can make
medical decisions in the event the patient becomes incapacitated. Living
wills are written instruments that seek to provide instructions for medical
care (including termination of life-sustaining measures) when the patient
can no longer decide for himself.

According to the President’s Council on Bioethics, “[t]he idea of the
living will has been enthusiastically endorsed not only by Congress and the
courts, but also by state legislatures, the Veteran’s Administration, medical
and legal associations, doctors, lawyers, ethicists, and patient advocacy
organizations.”16

THE ANTHROPOLOGY OF THE LAW OF LIFE-SUSTAINING MEASURES

Just as for the law of abortion and assisted reproduction, the anthropology
of the law of life-sustaining measures emerges from first considering the
goods it means to advance. The primary good that decisively orients the
legal framework is autonomy. It single-mindedly seeks to advance the good
of being free from unwanted bodily intrusion. Some state courts—referring
specifically to abortion jurisprudence—style it as the good of privacy.
Others have described it as the “right to possession and control of one’s
person” or the “right to be left alone.”

The form of autonomy conferred on patients by the law of end-of-life
decision-making is the freedom to shape their life’s narrative, to construct a
conclusion that reflects their own self-understanding, and to convey this
meaning to others by the choices they make. Legal philosopher Ronald
Dworkin wrote that people “want their deaths, if possible, to express and in
that way vividly confirm the values they believe most important to their
lives.”17

Thus, the image of the flourishing person that lies beneath the legal
mechanisms of this domain is the solitary individual seeking to assert his

will in the face of mortality and suffering, to make a final existential choice
that will express his deeply held views about the meaning and value of his
life and how to live it. This is the protagonist of expressive individualism,
authoring the last chapter of his self-constructed story.

As applied to a patient of sound mind, competent to make his or her
own treatment decisions, this is a mostly uncontroversial anthropological
grounding for the law. To be sure, it fails to account for the diminished
agency that comes with suffering, the more complex array of preferences
and desires of patients in this context, and the web of other people affected
by such decisions. But given the intimate, delicate, and highly personal
nature of these choices, there are good prudential reasons to keep the
intrusive machinery of the state from interfering with decision-making by
competent patients to reject undesired care. Concerns about fraud, abuse,
and duress are less grave when a patient can reflect, deliberate, and decline
unwanted medical interventions in his or her own voice. Forcing medical
care on competent patients against their wishes runs contrary to well settled
and widely shared principles of American law and medical ethics.

However, the anthropology of expressive individualism becomes
highly problematic when illness or injury has silenced the patient or
otherwise rendered her incompetent to make decisions regarding life-
sustaining measures. The person as an atomized unencumbered will seeking
its own path forward does not match the lived embodied reality of profound
vulnerability and dependence of debilitating injury and illness that leaves
one unable to reflect and make life and death choices.

And yet, expressive individualism remains the anthropology of the law
in these circumstances. The law insists on the fiction that it is possible to
exercise autonomy and self-determination once the ability to formulate or
express a decision regarding life-sustaining measures is irretrievably lost. It
falsely equates the current exercise of autonomy with binding a now-
incapacitated patient to previously expressed wishes, either by operation of
a living will or by reconstructing his intentions by recalling less solemn
forms of communication. To borrow the words of the President’s Council
on Bioethics, the law’s mechanisms of end-of-life decision-making for
incompetent patients rest on the anthropological premise that “each

individual [can] remain—by this ‘remote control’—a self-determining
agent, even when he can no longer directly or contemporaneously
determine his own fate.”18

The shortcomings of a legal strategy rooted in autonomy and self-
determination for profoundly vulnerable, dependent, and cognitively
impaired patients dependent upon life support becomes clear in light of the
frustrated aspirations of the nationwide campaign for the living will. Putting
aside the fact that only about a quarter of people in the United States have
living wills, there is good reason to believe that even for those that do, it is
not effective as the sole means to govern end-of-life decision-making once
competence is lost.19 The President’s Council on Bioethics, reviewing the
social science evidence analyzed by Amy Fagerlin and Carl Schneider,
found that many people surveyed preferred to let proxy decisionmakers
have leeway to make choices on their behalf.20 Vulnerable people facing the
possibility of life’s end do not seek to assert their unencumbered wills. They
want help from those who love them or from experts committed to caring
for them.

Moreover, “most people find it difficult to accurately predict their
preferences ‘for an unspecifiable future confronted with unidentifiable
maladies with unpredictable treatments.’ ”21 A meta-analysis of multiple
studies showed that large percentages of people routinely change their
preferences regarding life-sustaining measures in a relatively short period of
time.22 This difficulty for strategies of legal “precommitment” becomes
especially acute when the young and healthy try to imagine how and
whether they would find meaning in a much-diminished state due to
disease, injury, or senescence. The President’s Council noted that there is
“an extensive body of research on how poor we are at predicting our own
preferences and desires, especially in regard to choices far off in the
future.”23

Moreover, living wills as drafted are often either underinclusive
regarding possible future scenarios or are so overbroad that they do not
provide sufficiently concrete guidance.

Schneider and Fagerlin do not blame this problem on poor drafting, but
rather the nature of the task itself, namely, trying to predict a highly

complex and variable future. Even more problematic is that studies have
shown that patients themselves are ambivalent about whether their
instructions should be precisely followed.24

Some studies have indicated that living wills do not meaningfully
improve the accuracy of proxy decisionmakers in predicting the actual
preferences of patients. According to the President’s Council on Bioethics:

Strikingly, what the researchers found in this study was that,
compared to the control group, none of the interventions produced
significant improvement in the accuracy of the surrogates’
judgment in any illness scenario or for any medical treatment.
When spouses or children of elderly patients made surrogate
“decisions” about medical treatment based only on their familiarity
with the patient, their judgments were just as accurate as that of
spouses and children who had read or read and discussed a detailed
living will drawn up by the patient.25

In addition to these concerns, there are problems with holding a now-
incompetent patient to past choices to decline life-sustaining measures
made when young and in the peak of health. The current patient can no
longer revise these choices, even if he derives value from life in his
diminished state. The difficulty is illustrated by the hypothetical case of
“Margo,” derived from Andrew Firlik’s account of an Alzheimer’s patient
suffering from dementia who was quite content with her life of visiting with
friends whose names she could never recall, drawing the same picture, and
listening to the same songs.26 Ronald Dworkin suggested that if Margo had
previously executed a living will categorically refusing life-sustaining
measures in the event of dementia, should she now contract pneumonia, she
should be denied life-saving antibiotics. He argued that to provide
antibiotics in this scenario would be to engage in an “unacceptable form of
moral paternalism,” and a violation of the patient’s desire to shape the
conclusion of her life’s narrative in a manner consistent with her self-
understanding.27 Rebecca Dresser, however, pierces the fiction that this is a
valid exercise of self-determination for the patient Margo is now: “A policy

of absolute adherence to advance directives means that we deny people like
Margo the freedom we enjoy as competent people to change our decisions
that conflict with our subsequent experiential interests.”28

While it is not clear what would happen in a real case involving a
patient like Margo, the law’s preferred approach as a general matter is to
bind now-incompetent patients to choices previously expressed either
formally through a living will or informally through oral statements and
behaviors deemed sufficient to indicate past preferences. But by doing so
the law ignores the embodied reality of the profound vulnerability and
dependence of the person suffering under the yoke of debilitating cognitive
impairment and instead projects onto him a false image of an intact mind
and will. At a time when a person is most fragile and dependent on the care
of others for basic needs, the law elevates freedom and self-determination
as its animating goods. In a moment when the patient cannot speak for
himself, the law insists that his voice be heard and heeded. The single-
minded focus on autonomy, grounded in the anthropology of expressive
individualism thus renders the law unable to respond fully to the unique
needs of this stage of life.

What is needed, therefore, is a legal approach rooted in an
anthropology of embodiment. Such an approach understands that because
persons are bodies, the living patient diminished by injury, illness, or
senescence is the same person who, when younger and healthier, expressed
views about the appropriate use of life-sustaining measures. To honor the
person, those views should be honored, but so too should be the needs of
the patient he has now become. An anthropology of embodiment would
reject here (as it did in the contexts of the beginning of life) the distinction
that some draw between living human beings and human “persons” based
on cognitive capacity. The patient whose cognition has been irretrievably
lost does not likewise lose her personhood. The life cycle of the person
even in the very best of circumstances is marked by radical dependence at
the beginning of life, development of one’s bodily powers as well as
cognition and will, followed by a decline into dependence and vulnerability
once again.

An anthropology of embodiment recognizes this “scale of disability” as
the nature of life humanly lived—the pathway of all persons.

Caring rightly for an incompetent person dependent on life-sustaining
measures requires thinking carefully about previously expressed
preferences, but it does not end there. It requires a prudential weighing of
present needs and circumstances in all their complexity. And this should
occur, as in all cases of profound human dependence throughout life’s
cycle, in networks of uncalculated giving and graceful receiving. This, as
elsewhere, requires the practice of the virtues of just generosity, hospitality,
and especially accompaniment in suffering (misericordia). The focus of care
must be the patient who presents herself, in all her neediness and
vulnerability. Care should not be given according to some idealized
standard of how we remember her in the past or how we might wish her to
be. Nor should care depend on her inability to become again what she once
was. Our care is determined by the patient as she is now.

What, then, might a public bioethics of life-sustaining measures look
like when augmented by the anthropology of embodiment? Here, as in
previous chapters, there are only general principles on offer, with the
working out of details deferred to the future.

The first principle is that the law should respond to the unique
vulnerability and dependence of this context by strengthening and
supporting the networks of giving and receiving necessary to care for such
patients. Following the recommendation of the President’s Council on
Bioethics, the law should encourage the creation of proxy directives,
naming those who can make decisions in the event of future circumstances
of incompetency. The proxy should carefully consider the preferences
expressed by the patient in the past, but also take into account the
complexity of present circumstances and the needs of the patient as he
currently is. This approach integrates both the good of self-mastery that
reflects the freedom and particularity of individuals, as well as the
acknowledgement of dependence that is part of every embodied being’s
story. In the words of the Council:

The proxy directive does not ignore the significance of our desire
to participate (in advance) in shaping treatment decisions made for
us at a time in the future when we can no longer participate
concurrently. Precisely by naming someone to serve as our proxy,
we take that desire seriously. At the same time, however, this
approach emphasizes less the importance of self-determination and
correspondingly more the importance of solidarity and
interdependence. It invites us to move toward our final days and
years not in a spirit that isolates our free decisions from the
networks of those who love and care for us but, instead, in a spirit
that entrusts our dying to those who have supported us in our
living. It enlists them to stay by our side, to the very end.29

The proxy must resist the temptation to project his own judgment about
quality of life, viewed from his perch as an able-bodied and healthy
individual. There is a natural temptation to look at those in a diminished
state and conclude that theirs is a life not worth living. But if we are
demonstrably bad at predicting how we ourselves might derive meaning
and joy in a state of disability, we are even worse at judging how others
might do so. The temptation to alleviate suffering or disability by
eliminating the patient must be resisted. The President’s Council offers a
useful framework for avoiding this well-meaning and paternalistic but
ultimately misguided judgment about a life not worth living. The proxy
decisionmaker should focus on the medical intervention under
consideration. Declining a treatment because it itself is unduly burdensome
or futile is different from doing so for the purposes of hastening the end of a
life judged by the proxy to be of low quality. Refusing or terminating an
unduly burdensome or futile treatment on behalf of an incompetent patient
is a choice for a different, perhaps shorter life. It is not a choice for death.

Proxies are less likely to project their own preferences on to the patient
in their charge if they remain focused on the intervention at issue, not her
underlying condition. Of course, fleshing out the meaning of “burden” and
“futility” requires a great deal of fact-bound thought and reflection that is
better left to a future inquiry.

For those without family or friends, the law must fill the gap in the
network of giving and receiving on which the vulnerable depend. As the
Council advises, “[w]e should not too readily acquiesce in a vision that
isolates us in the time of our dependency, or a vision that rests on the false
notion that individuals can precisely determine and manage every fact of
their lives until the very end.”30 The law should here, as elsewhere, work to
shore up the networks of giving and receiving throughout society such that
the goods of friendship and solidarity will be practiced and well developed,
and thus ready to respond to the most pressing crises of care.

ASSISTED SUICIDE

The final “vital conflict” to be examined is the law concerning assisted
suicide. While the vast majority of states do not permit assisted suicide and
the American Medical Association remains opposed to it, the campaign to
legalize the practice appears to have grown in momentum with the passage
of laws in seven jurisdictions since 2013. Just as with the other legal
frameworks discussed in the preceding pages, this impoverished
anthropological foundation renders the law incapable of responding to the
full range of neediness of this context, and threatens the especially
vulnerable and dependent, who are invisible from expressive
individualism’s narrow angle of vision. As before, these defects emerge
from analyzing the law itself to discern the goods it is meant to serve, and
to uncover its underlying premises about human identity and flourishing.

At common law, conventional suicide was a crime punishable by
confiscation of the decedent’s movable goods (though not real property, as
in Roman Law). In America during the pre-revolutionary years, it was
punished with forfeiture of property and in some cases “ignominious
burial,” to dishonor the remains of the suicide. Gradually, however,
Americans came to see such punishments as unfair to survivors, and unjust
to those who commit suicide, as they grew to appreciate that the close
relationship between mental illness and suicide diminished the culpability
of those who take their own lives.

Accordingly, suicide itself was decriminalized throughout the United
States. However, the law continued to regard suicide as a grave harm to be

prevented and deterred. The law retained procedures for involuntary civil
commitment and other restrictive mechanisms to prevent suicide. Assisting
another in suicide remained illegal.

Then in 1994 by referendum the state of Oregon adopted the Death
with Dignity Act, legalizing assisted suicide and regulating its practice.31

After litigation, the law went into effect in late 1997. The state of
Washington followed suit in 2008 and legalized assisted suicide by
referendum.32 In 2009, the Montana Supreme Court declared that assistance
in suicide is not prohibited by its extant state law.33 Led by Compassion and
Choices, the principal advocacy organization for assisted suicide, there have
been a number of initiatives to legalize the practice that have succeeded in
seven additional jurisdictions including Vermont (2013), California and
Colorado (2016), Washington, D.C. (2017), Hawaii (2018), and New Jersey
and Maine (2019).34 This brings the total number of U.S. jurisdictions
where assisted suicide is legal to ten (including the District of Columbia).
By contrast, since 1997 eleven states have explicitly banned assisted
suicide, and efforts to liberalize existing bans have foundered in others
(most notably in Massachusetts in 2012).35

In 1997, in the companion cases of Washington v. Glucksberg and
Vacco v. Quill, the U.S. Supreme Court declared that state laws banning
assisted suicide do not violate the United States Constitution.36 The right to
assisted suicide is not protected by the Due Process Clause as it is neither
“objectively, deeply rooted in the Nation’s history and tradition,” nor is it
“implicit in the concept of ordered liberty” such that “neither liberty nor
justice would exist if the right were sacrificed.”37 The Court further held
that laws banning assisted suicide do not violate the Equal Protection
Clause of the Fourteenth Amendment, distinguishing the freedom of
patients to refuse intrusive, unwanted medical care from the right to
affirmatively take their own lives with the aid of a physician.38 The Court
concluded that banning assisted suicide is a rational means to advance
legitimate state interests, namely, protecting life generally, preventing
suicide, safeguarding the integrity of the medical profession and the role of
physicians as healers, protecting the vulnerable, poor, elderly, marginalized,
and disabled from neglect, abuse, mistakes, bigotry, and pressures to end

their own lives, and preventing a move towards direct mercy killing
(euthanasia).39

More recently, two state courts of last resort in New Mexico (Morris v.
Brandenburg 2016) and New York (Myers v. Schneiderman 2017) reached
similar conclusions in analyzing claims under their state constitutions.40 The
Supreme Court of New Mexico rejected the claims by plaintiffs that the
state interests cited in Glucksberg and Quill were based on worries that had
proven false in the intervening years.41 The Court pointed to more recent
consideration and renewal of these concerns by the New Mexico legislature
as recently as 2015.42

Today advocates and opponents of assisted suicide alike perceive that
efforts to legalize the practice are advancing. All the laws proposed and
adopted are based on the paradigm of Oregon. Thus, it offers an excellent
framework for analyzing the anthropological premises of assisted suicide
laws in America more broadly. As shown below, the vision of the person
and flourishing that underwrites Oregon’s law and those modeled upon it is
expressive individualism.

The Oregon law authorizes physicians to prescribe a lethal dose of
drugs to terminally ill adult Oregon residents, so they may self-administer
them for the purpose of ending their lives. The law states that it does not
authorize euthanasia.43 Death by means of assisted suicide is not defined as
“suicide” under Oregon law and death certificates list only the underlying
terminal illness as the cause of death.44 Terminal illness is defined as a
malady that will produce death in six months or less, but the law does not
specify whether this prognosis distinguishes life expectancy with treatment
versus without it.45 Competency under the law is defined as “the ability to
make and communicate health care decisions.”46

To obtain a prescription, eligible patients are required to make two oral
requests of a physician (it need not be the same person) separated by at least
fifteen days.47 Recently, the state enacted a waiver provision for cases where
the doctor believes that the patient might die during the waiting period. The
patient must also issue a written request, signed by two witnesses (though
there are no significant restrictions on who these might be).48 Two
physicians—one prescribing and one consulting—must confirm the

diagnosis, prognosis, and capability of the patient to make the request. If
either physician believes that the patient’s judgment is impaired by a
psychiatric or psychological disorder, he will refer him for evaluation.49

There is no mandatory psychiatric or psychological assessment of patients
seeking prescriptions.50 The prescribing physician must advise the patient of
alternatives including comfort care, hospice care, and pain control. There is
no requirement that the prescribing physician have expertise in any of these
fields.51 The physician may request (though must not require) that the
patient advise family or next of kin of the request for prescription.52 Such
physicians are frequently members or affiliates of Compassion and Choices;
there is a limited number of doctors in the state willing to prescribe lethal
medications.53 Once the prescription is issued, there is no requirement that
any health care professional be present for the administration of the lethal
dose. Physicians are immunized from liability if they are found to have
made a “good faith” effort to comply with the law—a significantly more
permissive standard than the usual framework for malpractice.54

Since 1998, 1,459 people have taken their own lives under the Death
with Dignity Act.55 The number of patients ending their lives under the law
has steadily increased, doubling from the four-year period of 2008–2012 to
2013–2017.56 Data is provided to the Oregon Health Authority by
prescribing physicians; the state does not have funding or a mechanism to
validate or audit such reports. Original reports are destroyed once the state
reports its aggregated annual data.57 One state official famously noted that
the Oregon Health Division has no enforcement role and cannot verify the
reports they receive from physicians who participate in the regime
established by the Death with Dignity Act.58

THE ANTHROPOLOGY OF ASSISTED SUICIDE LAWS

As before, the inductive analysis of the law focuses first on the goods it
seeks to advance, and then the underlying assumptions of human identity
and flourishing on which such goods are premised. The twin goods invoked
to support laws such as Oregon’s Death with Dignity Act are autonomy and
compassion. These aspirations are linked in the very name of the nation’s
leading assisted suicide advocacy organization: Compassion and Choices.59

The law is meant to allow the exercise of self-determination in the face
of a terminal illness, to choose the time and manner of one’s demise. An
array of famous American moral and political philosophers—Ronald
Dworkin, John Rawls, Robert Nozick, Thomas Nagel, Thomas Scanlon,
and Judith Jarvis Thomson (of the famous violinist analogy discussed in
Chapter 3)—filed an amicus brief to aid the Supreme Court in its
consideration of Washington v. Glucksberg and Vacco v. Quill.60 The
“Philosopher’s Brief,” as it was called, was also published in The New York
Review of Books. It invoked the precedent of Planned Parenthood v. Casey
for a broad individual right of self-determination in making the most
intimate and important personal choices. The choice of how and when to
die, the brief argued, was a pristine example of such a self-defining
decision:

Most of us see death—whatever we think will follow it—as the
final act of life’s drama, and we want that last act to reflect our
own convictions, those we have tried to live by, not the convictions
of others forced on us in our most vulnerable moment.61

Seventeen years later, the face of the campaign for assisted suicide
became Brittany Maynard, a beautiful and dynamic young woman in her
twenties who moved to Oregon to take her own life following a diagnosis of
terminal brain cancer. She spoke passionately about the freedom to choose
the timing and manner of her death, and to avoid the pain and decline of her
disease. She situated this choice in the larger context of the freedom to
pursue the life of one’s dreams: “The reason to consider life and what’s of
value is to make sure you’re not missing out. Seize the day. What’s
important to you? What do you care about? What matters? Pursue that,
forget the rest.”62 The executives of Compassion and Choices were elated to
have such an appealing spokeswoman for the right to assisted suicide. They
created ad campaigns and websites including such slogans as “My life. My
death. My choice. I support Brittany Maynard and all Americans’ right to
choose #DeathwithDignity.”63 This campaign was influential in the

successful push to legalize assisted suicide in California, Maynard’s home
state.

Alongside the freedom to exercise autonomy in shaping the timing and
manner of one’s death, advocates cite compassion for the suffering as the
second core animating good of assisted suicide legalization. They invoke
compelling images of patients suffering from excruciating and refractory
pain, which only ends in death. Assisted suicide is thus justified as a
compassionate option for those with intolerable suffering to end the pain by
ending their lives with the assistance of a physician.

These are compelling arguments, vividly argued. To one who is
anticipating a life of decline, pain, and death, the image of the solitary
individual imposing the rational mastery of his will on these dire
circumstances—at once exercising his fundamental freedom, using it to
author the ending to his life’s story with the integrity and coherence of his
self-understanding, and in so doing, avoiding an undignified and painful
decline—might be appealing. It is an image of freedom, choice, and dignity
that resonates deeply with rugged American individualism and Romantic
expressivism.

But it is a vision that is deeply forgetful of the body, and the profound
vulnerability and dependence faced not only by the patients who choose
assisted suicide, but also the vulnerable populations who live in
jurisdictions that have embraced the law, ethics, and culture of assisted
suicide.

CRITIQUING AND REFORMING THE LAW OF ASSISTED SUICIDE

The anthropology of expressive individualism fails to account for the
diminished agency at the margins of life for an embodied being in time,
overstates the possibility of autonomy in this setting, and underestimates the
risks of systemic neglect, fraud, abuse, mistake, and coercion in a legal
regime that allows assisted suicide. Accordingly, the law in Oregon (on
which other similar state laws are modeled) fails to adopt crucial safeguards
to protect the fragile, needy, elderly, poor, stigmatized, and disabled from
such threats. Indeed, just as in the previous contexts discussed in the
preceding pages, such vulnerable persons are absent from expressive

individualism’s field of vision. Moreover, the data from Oregon, sparse
though it is, undercuts the view that assisted suicide is a panacea for
patients with intractable and excruciating pain.

First, the law in Oregon does not take account of the strong correlation
between mental illness, especially treatable depression, and suicidal
ideation and desires. There is a large body of social science evidence that
shows a supermajority of persons with suicidal ideation suffer from mental
illness, including a clear majority suffering from treatable depression. A
review of the medical literature showed that “[t]he incidence of suicide in
someone with a cancer diagnosis is approximately double the incidence of
suicide in the general population.”64 For cancer patients, depression was
“the major risk factor for suicidality” and such patients “were 4 times more
likely to have a desire for hastened death … compared with those patients
without depression (47 percent versus 12 percent).”65 The National Cancer
Institute also noted a strong correlation between cancer patients suffering
from depression and the false sense that they were a burden to their loved
ones.66 Moreover, another study on suicidal ideation in the elderly noted
that “[a] universal finding is the strong association with psychiatric illness,
particularly depression.”67 It concluded that “the fact that there is a high
prevalence of potentially treatable psychiatric illness in those elderly people
who have both physical illness and suicidal ideation should be central in
any discussion of physician-assisted suicide.”68

These studies are highly relevant to assessing whether patients in
Oregon are capable of the sort of autonomy the law assumes. Seventy-six
percent of patients who have died by assisted suicide in the state suffered
from cancer, and the median age of all patients was seventy-two.69 Yet there
is no mandatory screening for psychiatric illnesses that might compromise
the self-determination of those who request prescriptions to end their lives.
Consulting or prescribing physicians are required to order such evaluations
only when they feel that a psychiatric condition might impair the judgment
of the patient.70

The brute numbers confirm without doubt that the physicians
administering Oregon’s Death with Dignity Act do not regard depression as
ever impairing judgment. To wit, in 2018 less than 2 percent of patients

were referred for psychiatric or psychological evaluation, despite the fact
that the incidence of depression among cancer patients and the elderly
expressing suicidal desires is orders of magnitude higher.71 And there is no
information regarding what happened following such consultations—this
data is not gathered or reported. It is possible that the small number of
physicians in Oregon who participate in the Death with Dignity Act are not
able to recognize depression in their encounters with patients. Only 28
percent of Oregon physicians surveyed indicated they feel confident to do
so.72 In any event, all indications are that patients suffering from treatable
depression—a major but reversible factor in formation of suicidal desires—
are regularly being prescribed lethal drugs. This raises serious questions
about the reality of the “autonomy” of the patients assumed by the law. Yet
later laws modeled on Oregon’s have loosened these standards further. For
example, in New Jersey and Colorado any psychological evaluation is
designed not to discover a depression or other condition that may impair
judgment, but only to determine that the patient can absorb information or
communicate a decision, regardless of whether his or her judgment is
impaired; in New Jersey and Hawaii the evaluation may be done by a
clinical social worker instead of a psychologist or psychiatrist.

Most worrisome of all is that there is no requirement to assess
voluntariness or competence at the time the patient ingests the lethal drugs.
The median length of time between first request and death is forty-seven
days.73 Indeed, there is no obligation at all for a physician to attend the self-
administration of the drugs. Unsurprisingly, since 1998 the prescribing
physician was confirmed to be present at the time of death in only 15
percent of cases.74 As a result, Oregon has very little information on
complications that arise during self-administration; in 53 percent of cases
since 1998 this information is coded as “unknown.”75 Thus, there is simply
no rigorous, systematic, and verifiable way to know anything about the state
of mind of the vast supermajority of Oregon patients when they self-
administered lethal drugs to take their own lives.

There is additional evidence that the patients in Oregon are not
choosing to die free from internal pressures. In 2018, 54 percent of patients
who obtained prescriptions reported that they were seeking to end their

lives because they perceived themselves as a burden to family and friends,
the highest percentage recorded since 1998.76 Sixty-eight percent of patients
had insurance or received it solely from government sources—Medicare
and / or Medicaid.77 The percentage of patients on government insurance
doubled from 2008–2012 to 2013–2017.78 These programs fully cover “aid
in dying,” but under Oregon’s Medicaid rationing plan have payment caps
on other possible life-saving interventions.79

The argument that assisted suicide is a necessary and humane response
to the intractable suffering of terminally ill patients is somewhat belied by
the evidence, scant though it is. For one thing, unlike in Europe, intolerable
suffering is not a prerequisite for eligibility for assisted suicide. The
threshold condition is a diagnosis of “terminal illness,” though this is a
famously difficult prediction to make.80 Only 26 percent of respondents in
2018 reported that “inadequate pain control or concerns about it” motivated
them to pursue a lethal prescription. This number has remained relatively
stable since 1998.81 By far the most common rationales cited for seeking
assisted suicide were concerns about “losing autonomy” (92 percent) and
being “less able to engage in activities making life enjoyable” (91
percent).82

For those terminally ill patients who are in intractable pain, there is no
requirement that the consulting or prescribing physicians who administer
the Death with Dignity Act have expertise or even minimal qualifications to
evaluate pain or propose a plan for pain management. As a result, they are
severely compromised in their ability to identify and clearly explain to
patients the options for pain management or palliative care that could offer
an alternative to assisted suicide. In this way, the law does not empower the
autonomy of patients, nor does it respond fully to their suffering.

There is evidence that some jurisdictions that have legalized assisted
suicide make less use of hospice care as a general matter. Oregon made
major strides in developing hospice programs prior to legalizing assisted
suicide, but since legalization its hospice utilization has fallen behind the
national average rate of use.83 Washington, Montana, and Vermont—states
that have also legalized assisted suicide—likewise fall below the national
average in hospice utilization rate.84

Concerns about diminished autonomy and lack of meaningful
safeguards against neglect, fraud, abuse, duress, and mistake are amplified
for vulnerable populations such as the disabled, the elderly, the
marginalized, and the poor. In 1994, the New York Task Force on Life and
Law, an advisory body to Governor Mario Cuomo, put the problem thus:

We believe that the practices [of assisted suicide and euthanasia]
would be profoundly dangerous for large segments of the
population, especially in light of the widespread failure of
American medicine to treat pain adequately or to diagnose and
treat depression in many cases. The risks would extend to all
individuals who are ill. They would be most severe for those
whose autonomy and well-being are already compromised by
poverty, lack of access to good medical care, or membership in a
stigmatized social group. The risks of legalizing assisted suicide
and euthanasia for these individuals, in a health care system and
society that cannot effectively protect against the impact of
inadequate resources and ingrained social disadvantage, are likely
to be extraordinary.85

These worries have been acknowledged by the Supreme Court (in
Glucksberg and Quill) in 1997, and by the courts of last resort in New
Mexico and New York in 2016 and 2017, respectively, despite claims that
such worries have proven unfounded. There is simply no rigorous,
verifiable system of data collection to gather sufficient information to rule
out these concerns. Moreover, the absence of any requirements in the law of
Oregon (and those modeled upon it) that there be mandatory evaluation for
relevant psychiatric or psychological conditions, that voluntariness and
competency be assessed at the time the lethal drugs are ingested, that there
be consultation with next of kin, or that anyone be present at the time of
ingestion and death, opens the door to all manner of fraud, abuse, duress,
coercion, mistake, or even homicide. In short, the Oregon law’s failure to
take seriously the dependence, fragility, and diminished agency of

embodied beings in the grip of terminal illness poses potentially grave risks
for a wide circle of vulnerable people.

The logic of autonomy and compassion that animates the Oregon laws
does not contain limiting principles sufficient to restrict the law to a regime
of assisted suicide only for the terminally ill. Instead, the full and coherent
embrace of these twin normative principles point to the acceptance of direct
killing by euthanasia, for any reason, including in the absence of a request.
For example, it does not fully respect the autonomy of a patient nor is it
compassionate to deny him access to aid in dying because of his reasons for
seeking it (for example, because he is not terminally ill). It is not
compassionate, nor does it honor his freedom to allow only oral self-
administration of lethal drugs as the sole means to end his life. Some
patients are not capable of taking drugs orally. Similarly, it is not
compassionate to deny aid in dying to those patients, including children and
the cognitively disabled, who are not able to make the request on their own
behalf. Thus, in countries such as Belgium and the Netherlands, the practice
has moved inexorably from assisted suicide to euthanasia and from
voluntary to nonvoluntary, allowing, for example, the direct killing of
infants under the Groningen Protocol.86 Moreover, the reasons for
euthanasia have expanded rapidly to encompass autism, depression, and
even the claim one’s life seems “meaningless.”

There are already proposals to liberalize the Oregon law further, to
relax the definition of “terminal illness” to embrace a very wide array of
conditions, to expand the definition of “self-administer” to include other
delivery systems besides oral ingestion, and to allow health care providers
aside from physicians to make prescriptions.87

Vulnerable communities have expressed deep concerns about the risks
imposed by legalization of assisted suicide. Organizations that advocate for
the rights of the disabled have been especially resistant to legalizing
assisted suicide on the grounds that it promotes a social attitude that lives
characterized by diminished physical or cognitive functioning are worse
than death. Such advocates worry about assisted suicide laws enhancing
already entrenched attitudes of bigotry and discriminatory practices towards

the disabled. But even more frightening is the prospect of disabled persons
being pressured subtly or overtly to end their lives.88

Relatedly, many physicians and the American Medical Association
itself have opposed legalization of assisted suicide on the grounds that it
would transform medicine from a healing art to its opposite and sow doubt
and mistrust between doctors and patients. The AMA cautioned against the
temptations that it might pose to doctors: “Health care professionals also
experience great frustration at not being able to offer the patient a cure. For
some, the ability to offer the patient the ‘treatment’ of assisted suicide may
provide a sense of ‘mastery over the disease and the accompanying feelings
of helplessness.’ ”89 Columbia University psychiatrist Paul Applebaum has
expressed the worry that assisted suicide will remove incentives to treat
difficult cases: “Will psychiatrists conclude from the legalization of assisted
death that it is acceptable to give up on treating some patients?”90

Conversely, he is concerned that the advent of assisted suicide might risk
“inducing hopelessness among other individuals with similar conditions and
removing pressure for an improvement in psychiatric and social services.”91

ANTHROPOLOGY OF EMBODIMENT AND TERMINAL ILLNESS

Drawing implicitly upon the anthropology of expressive individualism, the
law of assisted suicide offers the freedom of the atomized individual will in
response to the vulnerability, dependence, fragility, and natural limits of
embodied life as it nears its end. What it offers concretely is the freedom to
choose self-annihilation as a mechanism to control the conclusion of life’s
narrative. But because the law fails to grasp the diminished agency of a
human being whose body is dying, the framework it offers is rife with risks
of fraud, abuse, duress, neglect, and coercion, especially for those
populations who are already vulnerable because of old age, disability,
poverty, or membership in a stigmatized class.

The answer to this failure is not to seek additional processes and
procedures that will allow for the autonomy of the solitary individual to
annihilate himself, but rather to strengthen and support the networks of
uncalculated giving and graceful receiving that cared for him when he was
radically dependent as he entered the world, and will do so again as he

leaves it. The role of the law is to encourage and reward the practice of just
generosity, hospitality, and accompaniment in suffering (misericordia).92 It
should support the opportunities for people to learn and practice gratitude,
humility, openness to the unbidden, and the tolerance of imperfection. The
law should support the cultivation of the moral imagination to see our
neighbor in the suffering other, and for those to see their own intrinsic and
equal dignity despite suffering from a diminished and dependent condition.

More concretely, the law must allow for the aggressive palliation of
pain. And it must protect vulnerable populations by not creating legal
regimes that teach that their lives are not worth living, and in which they
might even be pressured or coerced into ending them.

As with the prior chapters, how the law might accomplish these ends is
a highly complex question for a future inquiry. Suffice it to say that it does
not reflect or advance an anthropology of embodiment to legalize assisted
suicide. Rather, private ordering and public action must be mobilized to
redouble efforts to care for and accompany the sick and the dying while
avoiding the temptation to alleviate suffering by eliminating the patient
himself, whether by our hands or his own.

Conclusion

The fundamental purpose of law is to protect and promote the flourishing of
persons. Accordingly, the richest understanding of the law is an
anthropological one, obtained by inquiry into its underwriting premises
about human identity and thriving. In order to be fully wise, just, and
humane, the means and ends of the law must correspond to the reality of
human life, humanly lived.

The defining character of this reality is embodiment—the fact that we
experience ourselves, one another, and the world around us as living bodies.
As living bodies in time, we are vulnerable, dependent, and subject to
natural limits, including injury, illness, senescence, and death. Thus, both
for our basic survival and to realize our potential, we need to care for one
another. We need robust and expansive networks of uncalculated giving and
graceful receiving populated by people who make the good of others their
own good, without demand for or expectation of recompense. The goods
and practices necessary to the creation and maintenance of these networks
are the virtues of just generosity, hospitality, and accompaniment in
suffering (misericordia), as well as gratitude, humility, openness to the
unbidden, tolerance of imperfection, solidarity, respect for intrinsic equal
dignity, honesty, and cultivation of moral imagination. Viewed through the
lens of the anthropology of embodiment, all living members of the human
family are worthy of care and protection, regardless of age, disability,
cognitive capacity, dependence, and most of all, regardless of the opinions
of others. Everyone can participate in the network of giving and receiving,
even if only as the passive recipient of unconditional love and concern.
There are no pre- or post-personal human beings in the anthropology of
embodiment.

Through the nurture and protection of these networks we survive, and
eventually become the kind of people who can give to others in proportion
to their need, without the hope or expectation of receiving. In this way, we
take responsibility for sustaining such networks of care so that they can
endure for future generations. But, more deeply, it is through becoming a
person capable of unconditional and uncalculated care of others that we
become what we are meant to be. By virtue of our existence as embodied
beings in time, we are made for love and friendship.

Our modern dominant anthropology in the three perennial conflicts in
public bioethics—the legal disputes over abortion, assisted reproduction,
and end-of-life decision-making—is insufficient. It is rooted in expressive
individualism, a reductive and incomplete vision of human identity and
flourishing. While this captures a truth about human particularity and
freedom, it misses crucial aspects of embodied reality. Through the lens of
expressive individualism, there are no unchosen obligations, relationships
are instrumental and transactional, and natural givens offer no guidance for
understanding or negotiating the world. Vulnerability and dependence—that
of others and even our own—are not intelligible. And those around us
whose freedom and agency are diminished or absent because of age,
disease, or disability, are invisible and not recognized as other selves to
whom we owe duties of care (in the absence of a prior agreement).

The current law of abortion, as was argued, frames the public question
as a zero-sum conflict between isolated strangers, one of whom is
recognized as person, with the other deemed a sub-personal being whose
moral and legal status is contingent upon the private judgment of others. It
offers no comprehensive support for the vulnerable persons involved,
including especially the unborn child and her mother. The largely
unregulated legal landscape of assisted reproductive technology creates a
very particular form of “procreative liberty” that does not offer
complementary protections for the broad array of uniquely vulnerable
persons whose lives are touched by these procedures, including gamete
donors (especially women), gestational mothers, genetic mothers and
fathers, and the children conceived with the aid of assisted reproductive
techniques and practices. At the end of life, the law governing refusal or

termination of life sustaining measures for incompetent patients stubbornly
clings to a vision of the patient as an atomized autonomous will as its
animating premise, when the embodied reality of such patients is precisely
the opposite. Its default aspiration is to bind the now-incompetent patient
strictly and unreflectively to his prior preferences, rather than promote
decision-making by the patient’s loved ones, who will consider both his
prior wishes as well as the needs of the patient he has now become. The law
of assisted suicide similarly rests on the goods of autonomy and compassion
premised on a vision of the person reduced to desire and will, neglecting
entirely the profound vulnerability, dependence, and concomitant risks both
to patients themselves and at-risk populations in those communities that
have legalized the practice.

The influence of expressive individualism can be seen in the law’s
solutions to the problems posed in these domains. In response to the bodily,
psychic, and financial burdens of unwanted pregnancy and parenthood,
American abortion jurisprudence offers nothing more than a license to
terminate the developing human life in utero. In response to the pains and
desperation of infertility, the essentially unregulated American legal
landscape offers nothing more than the freedom to create (and select for) a
baby by almost any means possible. In the face of dependence on life-
sustaining measures, the law offers incompetent patients the right “to be left
alone” and the false promise of directing one’s own care by “remote
control” after cognitive abilities necessary for competence have been
irretrievably lost. In the face of terminal illness, the law of assisted suicide
merely offers a right to self-annihilation. These are the rights and privileges
suited to atomized individual wills who inhabit a world of strife. They are
limited weapons and tools of rational mastery fit for a lonely, disembodied
self to defend and pursue its interests. They are not well-designed to address
the complex needs and wants of a community of embodied, vulnerable, and
interdependent human persons.

For such a community, the anthropology at the core of these vital
conflicts of public bioethics must be augmented to correspond to the lived
reality of embodiment. Issues and laws must be reframed according to the
categories of connectivity of the networks of giving and receiving that

embodied beings need to survive and flourish. Reframing abortion as a
conflict involving a mother and her child, thus summoning the support and
care of the network in which both are embedded, including the father,
extended family, community, and polity (including the government itself)
opens channels of care, concern, support, and summons the uncalculated
giving that everyone owes to the mother and her child, before, during, and
after her birth. Resituated in this way, the law is free to do the difficult work
of applying its traditional principles of justification, excuse, and necessity
for cases involving the proposed use of lethal force involving a mother and
innocent child. Doing so allows for a full examination of the tragic conflict
in all its complexity, depending on the concrete facts and circumstances of
each case. Needless to say, it is beyond the scope of this inquiry to offer
specific rules of application of such principles without such context.

Similarly, the public questions of assisted reproductive technology
must be reframed within the anthropology of embodiment and the
normative category of parenthood—the network of uncalculated giving and
receiving par excellence—embracing all of the participants including
genetic parents, gestational mother, rearing parents, and child to be (at all
stages of development from conception to birth). All are entitled to the
protection, support, and care of the networks in which they are situated. The
fundamental aspiration of the law should be that every child conceived by
assisted reproductive technology should find her way to a home with
parents who will welcome her as a gift to be loved unconditionally. This
ultimate purpose should animate every decision by all involved as people
seek medical care in their quest to become parents.

As for the public bioethics of the end of life, the anthropology
undergirding the law must be honest in embracing the reality of
embodiment in time, with the vulnerability and dependence that follows.
Accordingly, the law should adopt measures designed to protect against
abuse, abandonment, fraud, and mistake, while facilitating care for the
patient in his current state, rather than as he was or as we might wish him to
be. The law should encourage and offer care, not open a pathway to suicide
by transforming the healing art of medicine into a handmaiden of death.

In all of these vital areas, the role of the law should be to help create,
support, and protect the networks of giving and receiving on which we all
depend in our vulnerability as embodied beings in time. It should encourage
the goods, virtues, and practices that sustain these networks. The law must
encourage the cultivation of the moral imagination, allowing persons to see
others to whom they owe a duty of care, or from whom they can make a
plea for support. And where such networks fail or are altogether absent, the
law must intervene to protect the vulnerable from exploitation and harm,
and from the temptation to harm others or even themselves in the pursuit of
their own desires and interests.

These are, of course, proposals formulated at the level of high principle
—purposes and ends—and do not begin speak to the complexities of how
one might make them operational in light of the current givens of the
American legal (not to mention political) landscape. They do not even
specify which of the panoply of mechanisms available to the law might be
deployed towards such ends. Such possibilities include a broad spectrum
ranging from passive or active encouragement of private ordering within
voluntary associations to more intrusive modes of intervention to regulate
behavior directly, with many fine-grained alternatives in between.

But before making such changes, we must reorient our thinking toward
the meaning and consequences of our individual and shared lives as bodies
in time. This book is a proposal, made in friendship and solidarity and
intended to be received in this spirit. It is a proposal for a more wise, just,
humane, and fully human public bioethics that begins by remembering the
body.

NOTES

ACKNOWLEDGMENTS

INDEX

NOTES

INTRODUCTION

1. Robert Bellah et al., Habits of the Heart: Individualism and Commitment in American Life
(Berkeley: University of California Press, 1985), 47; Charles Taylor, Philosophical Papers, vol. 2:
Philosophy and the Human Sciences (Cambridge: Cambridge University Press, 1985), 187–210.

2. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues
(Chicago: Open Court Publishing, 1999), 5.

3. Ibid., 121.
4. Ibid., 119; Michael J. Sandel, The Case Against Perfection: Ethics in the Age of Genetic

Engineering (Cambridge, MA: Harvard University Press, 2009), 45.

1. A GENEALOGY OF AMERICAN PUBLIC BIOETHICS

1. 45 C.F.R. § 46.102 (2019).
2. Henry K. Beecher, “Ethics and Clinical Research,” New England Journal of Medicine 274

(1966): 1354–1360.
3. Jean Heller, “Human Guinea Pigs: Syphilis Patients Died Untreated,” Washington Evening

Star, July 25, 1972, A1.
4. Victor Cohn, “Live-Fetus Research Debated,” Washington Post, April 10, 1973, A1.
5. Vincent J. Kopp, “Henry Knowles Beecher and the Development of Informed Consent in

Anesthesia Research,” Anesthesiology 90 (1999): 1756–1765.
6. Beecher, “Ethics and Clinical Research,” 1355.
7. Ibid., 1355.
8. Ibid., 1356.
9. Ibid., 1357.
10. Ibid., 1358.
11. Ibid.
12. Ibid.
13. Ibid., 1354.
14. Ibid.
15. Heller, “Human Guinea Pigs,” A1.
16. Ibid.
17. DeNeen L. Brown, “ ‘You’ve Got Bad Blood’: The Horror of the Tuskegee Syphilis

Experiment,” Washington Post, May 16, 2017.
18. Ibid.
19. Ibid.
20. Cohn, “Live-Fetus Research Debated,” Al.
21. Ibid.
22. Victor Cohn, “NIH Vows Not to Fund Fetus Work,” Washington Post, April 13, 1973, A1.
23. Victor Cohn, “Scientists and Fetus Research,” Washington Post, April 15,1973, A1.

24. Ibid.
25. Geoffrey Chamberlain, “An Artificial Placenta: The Development of an Extracorporeal

System for Maintenance of Immature Infants with Respiratory Problems,” American Journal of
Obstetrics and Gynecology 100 (1968): 615–626.

26. Peter A. J. Adam et al., “Cerebral Oxidation of Glucose and DbetaHydroxy Butyrate in the
Isolated Perfused Human Head,” Transactions of the American Pediatrics Society 309 (1973): 81.

27. In May of 2013, Dr. Gosnell would be sentenced to three life terms in prison for murdering
three newborns who survived their attempted abortions, and manslaughter for the death of patient
Karnamaya Mongar, who died of an overdose of sedatives in his clinic.

28. U.S. Congress, Senate, Committee on Labor and Public Welfare, Quality of Health Care—
Human Experimentation: Hearings before the Subcommittee on Health, 93rd Cong., 1st sess., 1973.

29. Ibid.
30. National Research Act of 1974, Public Law 93–348, U.S. Statutes at Large 88 (1974): 342–

354.
31. Ibid., 349.
32. Ibid., 350.
33. Ibid.
34. Ibid., 353.
35. U.S. Congress, Senate, Committee on Labor and Public Welfare, Fetal Research: Hearing

before the Subcommittee on Health, 93rd Cong., 2nd sess., 1974.
36. Ibid., 98.
37. Ibid., 81.
38. U.S. National Commission for the Protection of Human Subjects of Biomedical and

Behavioral Research, Research on the Fetus (1975), 74.
39. Ibid., 74.
40. Ibid., 68.
41. The Church Amendments are codified at 42 U.S.C. § 300a–7.
42. Michael J. New, “Hyde @ 40: Analyzing the Impact of the Hyde Amendment,” Charlotte

Lozier Institute, September 2016, 5, https://s27589.pcdn.co/wp-content/uploads/2016/09/OP_hyde_9
.28.3 .

43. Maher v. Roe, 423 U.S. 464 (1977).
44. In re Quinlan, 355 A.2d 647 (N.J. 1976).
45. Robert D. McFadden, “Karen Ann Quinlan, 31, Dies; Focus of ’76 Right to Die Case,” New

York Times, June 12, 1985, A1.
46. Department of Health, Education, and Welfare, Ethics Advisory Board, “Report and

Conclusions: HEW Support of Research Involving Human In Vitro Fertilization and Embryo
Transfer,” Federal Register 44, no. 118 (May 4, 1979): 35033–35058.

47. U.S. National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of
Human Subjects in Research (1979), https://www.hhs.gov/ohrp/regulations-and-policy/belmont-
report/read-the-belmont-report/index.html.

48. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and
Behavioral Research, Defining Death (1981), 2.

49. Bowen v. American Hospital Association, 476 U.S. 610 (1986).
50. Child Abuse Amendments of 1984, Public Law 98–457, U.S. Statutes at Large 98 (1984):

1749–1764.
51. National Organ Transplant Act, Public Law 98–507, U.S. Statutes at Large 98 (1984): 2339–

2348.

https://s27589.pcdn.co/wp-content/uploads/2016/09/OP_hyde_9.28.3

https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

52. The Department of Health and Human Services, one of the federal agencies that has adopted
the “Common Rule,” has codified its regulations in 45 C.F.R. § 46.

53. Health Research Extension Act of 1985, Public Law 99–158, U.S. Statutes at Large 99
(1985): 820–886.

54. Harris v. McRae, 448 U.S. 297 (1980).
55. Webster v. Reproductive Health Services, 492 U.S. 490 (1989).
56. In re Baby M, 537 A.2d 1227 (N.J. 1988).
57. Fertility Clinic Success Rate and Certification Act of 1992, Public Law 102–493, U.S.

Statutes at Large 106 (1992): 3146–3152.
58. Davis v. Davis, 842 S.W.2d 588 (Tenn. 1992).
59. Planned Parenthood v. Casey, 505 U.S. 833 (1992).
60. National Institutes of Health Revitalization Act of 1993, Public Law 103–43, U.S. Statutes at

Large 107 (1993): 122–219.
61. Public Law 104–99, U.S. Statutes at Large 110 (1996): 34.
62. James A. Thomson et al., “Embryonic Stem Cell Lines Derived from Human Blastocysts,”

Science 282 (1998): 1145–1147.
63. 497 U.S. 261 (1990).
64. William Claiborne, “ ‘Death With Dignity’ Measure May Make Oregon National

Battleground,” Washington Post, June 27, 1997, A19.
65. Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997).
66. George W. Bush, “President Discusses Stem Cell Research,” August 9, 2001, https://

georgewbush-whitehouse.archives.gov/news/releases/2001/08/20010809-2.html.
67. Andrew Pollack, “Measure Passed, California Weights Its Future as a Stem Cell Epicenter,”

New York Times, Nov. 4, 2004.
68. The “Weldon” Amendment is now permanently codified. Leahy-Smith American Invents

Act, Public Law 112–29, U.S. Statutes at Large 125 (2011): 340.
69. Shinya Yamanaka et al., “Induction of Pluripotent Stem Cells from Adult Human Fibroblasts

by Defined Factors,” Cell 131 (2007): 861–872; James A. Thomson et al., “Induced Pluripotent Stem
Cell Lines Derived from Human Somatic Cells,” Science 318 (2007): 1917–1920.

70. “Executive Order 13505 of March 9, 2009, Removing Barriers to Responsible Scientific
Research Involving Human Stem Cells,” Code of Federal Regulations, title 3 (2010): 229–230,
https://www.govinfo.gov/content/pkg/CFR-2010-title3-vol1/pdf/CFR-2010-title3-vol1 .

71. Stenberg v. Carhart, 530 U.S. 914 (2000).
72. Gonzales v Carhart, 550 U.S. 124 (2007).
73. Born Alive Infants Protection Act of 2002, Public Law 107–207, U.S. Statutes at Large 116

(2002): 926.
74. Unborn Victims of Violence Act of 2004, Public Law 108–212, U.S. Statutes at Large 118

(2004): 568–570.
75. Consolidated Appropriations Act, Public Law 111–117, U.S. Statutes at Large 123 (2009):

3034.
76. Fetus Farming Prohibition Act of 2006, Public Law 109–242, U.S. Statutes at Large 120

(2006): 570–571.
77. Martin Jinek et al., “A Programmable Dual-RNA-Guided DNA Endonuclease in Adaptive

Bacterial Immunity,” Science 337 (2012): 816–821.
78. Feng Zhang, “Genome Engineering Using the CRISPR-Cas9 System,” Nature Protocols 8

(2013): 2281–2308.
79. Puping Liang et al., “CRISPR / Cas9-Mediated Gene Editing in Human Triponuclear

Zygotes,” Protein & Cell 6 (2015): 363–372.

https://georgewbush-whitehouse.archives.gov/news/releases/2001/08/20010809-2.html

https://www.govinfo.gov/content/pkg/CFR-2010-title3-vol1/pdf/CFR-2010-title3-vol1

80. David A. Prentice, “Modest but Meaningful Protection from Human Embryo Genetic
Manipulation,” Townhall, December 17, 2015, https://townhall.com/columnists/davidaprentice/2015
/12/17/modest-but-meaningful-protection-from-human-embryo-genetic-manipulation-n2094746.

81. John Aach et al., “Addressing the Ethical Issues Raised by Synthetic Human Entities with
Embryo-Like Features,” eLife (2017): 1–20.

82. Shoukhrat Mitalipov et al., “Correction of a Pathogenic Gene Mutation in Human Embryos,”
Nature 548 (2017): 413–419.

83. Charlie Osborne, “Meet Lulu and Nana, Claimed to be the World’s First Gene-Edited
Children,” ZDNet, November 26, 2018, https://www.zdnet.com/article/meet-lulu-and-nana-the-
worlds-first-reported-gene-edited-children/.

84. Debra Goldschmidt, “Jahi McMath, California Teen at Center of Brain-Death Controversy,
Has Died,” CNNHealth, June 29, 2018, https://www.cnn.com/2018/06/29/health/jahi-mcmath-brain-
dead-teen-death/index.html.

85. Allan Turner, “Pasadena Man Whose Life-Threatening Illness Spurred Challenge to Texas
Law Dies at Hospital,” Houston Chronicle, December 23, 2015, https://www.chron.com/news
/houston-texas/houston/article/Pasadena-man-whose-life-threatening-illness-6717843.php.

86. Whole Woman’s Health v. Hellerstedt, 136 S.Ct. 2292 (2016).

2. AN ANTHROPOLOGICAL SOLUTION

1. James M. Gustafson, “Genetic Therapy: Ethical and Religious Reflections,” Journal of
Contemporary Health, Law, and Policy 8 (1992): 191.

2. Ernst Cassirer, An Essay on Man: An Introduction to a Philosophy of Human Culture (New
Haven: Yale University Press, 1992), 1.

3. Whitney J. Oates, ed., Basic Writings of Saint Augustine, vol. 1 (Grand Rapids, MI: Baker
Publishing Group, 1993), 172.

4. Psalm 8:4 (RSV).
5. Kenneth L. Schmitz, “Reconstructing the Person: A Meditation on the Meaning of

Personality,” Crisis Magazine, April 1, 1999, https://www.crisismagazine.com/1999/reconstructing-
the-person-a-meditation-on-the-meaning-of-personality.

6. Boethius, Theological Tractates and the Consolation of Philosophy, ed. H. F. Stewart and E.
K. Rand (Cambridge, MA: Harvard University Press, 1918); John Locke, Essay on Human
Understanding, ed. P. H. Nidditch (Oxford: Oxford University Press, 1975); Joseph Fletcher,
“Indicators of Humanhood: A Tentative Profile of Man,” The Hastings Center Report 2 (1972): 1–4;
Mary Anne Warren, “On the Moral and Legal Status of Abortion,” The Monist 57 (1973).

7. Quoted in Edmund D. Pelegrino, “Toward A Richer Bioethics: A Conclusion,” in Charles R.
Taylor and Robert Dell’Oro, eds., Health and Human Flourishing: Religion, Medicine, and Moral
Anthropology (Georgetown: Georgetown University Press, 2006), 248.

8. John H. Evans, What Is a Human? What the Answer Means for Human Life (Oxford: Oxford
University Press, 2016).

9. Robert Bellah et al., Habits of the Heart: Individualism and Commitment in American Life
(Berkeley: University of California Press, 1985), 27.

10. Roderick T. Long, “The Classical Roots of Radical Individualism,” Social Philosophy and
Policy 24 (2007): 262–297.

11. Tibor R. Machan, Classical Individualism: The Supreme Importance of Each Human Being
(London: Routledge, 1996).

12. Yehoshua Arieli, Individualism and Nationalism in American Ideology (Cambridge, MA:
Harvard University Press, 1964).

https://townhall.com/columnists/davidaprentice/2015/12/17/modest-but-meaningful-protection-from-human-embryo-genetic-manipulation-n2094746

https://www.zdnet.com/article/meet-lulu-and-nana-the-worlds-first-reported-gene-edited-children/

https://www.cnn.com/2018/06/29/health/jahi-mcmath-brain-dead-teen-death/index.html

https://www.chron.com/news/houston-texas/houston/article/Pasadena-man-whose-life-threatening-illness-6717843.php

https://www.crisismagazine.com/1999/reconstructing-the-person-a-meditation-on-the-meaning-of-personality

13. Alexis de Tocqueville, Democracy in America, vol. 2, trans. George Lawrence (New York:
Harper, 2006), 508.

14. Ibid.
15. Bellah, Habits of the Heart, 334.
16. Machan, Classical Individualism.
17. Adam Smith, An Inquiry into the Nature and Causes of the Wealth of Nations (Oxford:

Oxford University Press, 2008).
18. Bellah, Habits of the Heart, 47.
19. Charles Taylor, Philosophical Papers, vol. 2: Philosophy and the Human Sciences

(Cambridge: Cambridge University Press, 1985), 189.
20. Ibid., 201.
21. Ibid.
22. Ibid., 202.
23. Long, “The Classical Roots of Radical Individualism,” 262–297.
24. Michael J. Sandel, Public Philosophy: Essays on Morality in Politics (Cambridge, MA:

Harvard University Press, 2005), 160.
25. John Rawls, A Theory of Justice (Cambridge, MA: Harvard University Press, 2009), 491.
26. Ibid.
27. Sandel, Public Philosophy, 162.
28. Michael J. Sandel, “The Procedural Republic and the Unencumbered Self,” Political Theory

12 (1984), 87.
29. Sandel, Public Philosophy, 164.
30. Bellah, Habits of the Heart, 334.
31. Ibid., 33.
32. Ralph Waldo Emerson, Journals of Ralph Waldo Emerson, vol. 3 (Boston: Houghton Mifflin,

1912).
33. Bellah, Habits of the Heart, 48.
34. Charles Taylor, Sources of the Self: The Making of Modern Identity (Cambridge, MA:

Harvard University Press, 1989); Charles Taylor, Malaise of Modernity (Toronto: House of Anansi,
1991); Charles Taylor, Multiculturalism: Examining the Politics of Recognition (Princeton: Princeton
University Press, 1993); Charles Taylor, (1993), A Secular Age (Cambridge, MA: Harvard University
Press, 2007).

35. Taylor, The Malaise of Modernity, 16.
36. Ibid., 17.
37. Ibid., 16.
38. Ibid., 17.
39. Taylor, Sources of the Self, 375.
40. Plato, Theatetus, trans. Robin H. Waterfield (London: Penguin, 1987), 160d9.
41. Charles Taylor, The Ethics of Authenticity (Cambridge, MA: Harvard University Press,

1992).
42. Alfred Tennyson, “Ulysses,” Poetry Foundation, https://www.poetryfoundation.org/poems

/45392/ulysses.
43. George Gordon Noel Byron, Manred: A Dramatic Poem (London: John Murray, 1817).
44. John Milton, Paradise Lost, bk. 5 (London: Penguin, 2000), lines 854–866.
45. Taylor, Sources of the Self, 376.
46. Taylor, The Malaise of Modernity, 32.
47. Alasdair MacIntyre, After Virtue: A Study in Moral Theory (Notre Dame, IN: University of

Notre Dame Press, 1981), 11–12.

https://www.poetryfoundation.org/poems/45392/ulysses

48. Ibid., 220.
49. Ibid., 75.
50. Sandel, “The Procedural Republic and the Unencumbered Self,” 86.
51. Sandel, Public Philosophy, 164.
52. Alasdair MacIntyre, Dependent Rational Animals: Why Human Beings Need the Virtues

(Chicago: Open Court Publishing, 1999), 5.
53. Ibid., 73.
54. Ibid., 108.
55. Ibid., 91.
56. Bertrand de Jouvenel, The Pure Theory of Politics (Carmel, IN: Liberty Fund, 2000), 61.
57. Ibid., 60.
58. Milton, Paradise Lost, bk. 5, lines 859–861.
59. MacIntyre, Dependent Rational Animals, 82.
60. Charles Taylor, Philosophical Papers, vol. 2: Philosophy and the Human Sciences

(Cambridge: Cambridge University Press, 1985), 202.
61. Sandel, Public Philosophy, 166.
62. MacIntyre, After Virtue, 216.
63. Ibid., 216.
64. Sandel, Public Philosophy, 168.
65. Charles Taylor, Multiculturalism: Examining the Politics of Recognition (Princeton:

Princeton University Press, 1994), 32.
66. MacIntyre, After Virtue, 221
67. Michael J. Sandel, Liberalism and Its Critics (New York: New York University Press, 1984),

173.
68. Roger Scruton, On Human Nature (Princeton: Princeton University Press, 2018), 116.
69. Bertrand de Jouvenel, Power: The Natural History of its Growth (London: Batchworth,

1952), 414.
70. Aleksandr Solzhenitsyn, “We Have Ceased to See the Purpose,” in Aleksandr Solzhenitsyn,

The Solzhenitsyn Reader: New and Essential Writings, 1947–2005, eds. Edward E. Ericson and
Daniel J. Mahoney (Wilmington, DE: Intercollegiate Studies Institute, 2009).

71. John H. Evans, What Is a Human? What the Answer Means for Human Life (Oxford: Oxford
University Press, 2016), 13.

72. Ibid., 21.
73. Bellah, Habits of the Heart, 38.
74. MacIntyre, Dependent Rational Animals, 146.
75. Ibid., 146.
76. Ibid., 119.
77. Ibid., 121.
78. Michael J. Sandel, “The Case Against Perfection,” The Atlantic, April 2004, https://www

.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.
79. Michael J. Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering

(Cambridge, MA: Harvard University Press, 2009), 45.
80. MacIntyre, Dependent Rational Animals, 91.
81. Blaise Pascal, Pensées (London: Penguin, 1995).
82. Michael J. Sandel, “The Case Against Perfection,” The Atlantic, April 2004, https://www

.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/.
83. Keith Phipps, “Close Encounters of the Third Kind,” Slate, November 20, 2007, http://www

.slate.com/articles/arts/dvdextras/2007/11/close_encounters_of_the_third_kind.html.

https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/

https://www.theatlantic.com/magazine/archive/2004/04/the-case-against-perfection/302927/

http://www.slate.com/articles/arts/dvdextras/2007/11/close_encounters_of_the_third_kind.html

84. Quote available at https://www.officetally.com/the-office-the-whale.
85. Bellah, Habits of the Heart, 153.
86. Roscoe Pound, The Spirit of the Common Law (London: Routledge, 1999), 13.
87. Mary Ann Glendon, “Looking for ‘Persons’ in the Law,” First Things, December 2006,

https://www.firstthings.com/article/2006/12/looking-forpersonsin-the-law.

3. IN CASES OF ABORTION

1. Paul Benjamin Linton, “Enforcement of State Abortion Statutes after Roe: A State-by-State
Analysis,” University of Detroit Law Review 67 (1990): 158–160.

2. Roe v. Wade, 314 F. Supp. 1217 (N.D. Tex. 1970).
3. Griswold v. Connecticut, 381 U.S. 479, 487–499 (1965) (Goldberg, J., concurring).
4. Griswold v. Connecticut, 381 U.S. 479 (1965) (opinion of Douglas, J.).
5. Griswold v. Connecticut, 381 U.S. at 487–499 (1965) (Goldberg, J., concurring).
6. Roe v. Wade, 314 F. Supp. 1217, 1224 (N.D. Tex. 1970).
7. See United States Courts, “Appellate Courts and Cases—Journalist’s Guide,” https://www

.uscourts.gov/statistics-reports/appellate-courts-and-cases-journalists-guide.
8. Roe v. Wade, 314 F. Supp. at 1224.
9. Roe v. Wade, 410 U.S. 113 (1973).
10. Ibid., 152–154.
11. U.S. Const. amend. IV.
12. See Griswold v. Connecticut, 381 U.S. at 484 (1965) (opinion of Douglas, J.) (“The

foregoing cases suggest that specific guarantees in the Bill of Rights have penumbras, formed by
emanation from those guarantees that help give them life and substance.”).

13. Roe v. Wade, 410 U.S. at 152–154.
14. Lochner v. New York, 198 U.S. 45 (1905).
15. See Roe v. Wade, 410 U.S. at 152 (citing Palko v. Connecticut, 302 U.S. 219 [1937]).
16. Roe v. Wade, 410 U.S. at 152.
17. Ibid., 152–154.
18. Randolph, A. Raymond, “Before Roe v. Wade: Judge Friendly’s Draft Abortion Opinion,”

Harvard Journal of Law and Public Policy 29 (2006): 1037–1038.
19. Joseph W. Dellapenna, Dispelling the Myths of Abortion History (Durham, N.C.: Carolina

Academic Press, 2006), 315.
20. 1867 Ohio Senate J. App., 233–234.
21. Roe v. Wade, 410 U.S. at 153.
22. Ibid.
23. Ibid., 163.
24. Ibid., 155.
25. Ibid., 156–159.
26. Ibid., 159.
27. Ibid.
28. Ibid., 162.
29. Ibid., 163.
30. Ibid.
31. Ibid.
32. Ibid., 163–164.
33. Doe v. Bolton, 410 U.S. 179 (1973).
34. Ibid., 183.
35. Ibid., 183–184.

The Office: The Whale, 9.07

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