The Birth of Bioethics

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The Birth of Bioethics
Albert R. Jonsen

OXFORD UNIVERSITY PRESS

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Oxford University Press
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Copyright © 1998 by Oxford University Press

First published in 1998 by Oxford University Press, Inc.
198 Madison Avenue, New York, New York 10016
First issued as an Oxford University Press paperback in 2003.
Oxford is a registered trademark of Oxford University Press
All rights reserved. No part of this publication may be reproduced,
stored in a retrieval system, or transmitted, in any form or by any means,
electronic, mechanical, photocopying, recording, or otherwise,
without the prior permission of Oxford University Press.

Library of Congress Cataloging-in-Publicalion Data

Jonsen, Albert R.
The birth of bioethics / Albert R. Jonsen.
p. cm.
Includes bibliographical references and index.
ISBN 0-19-510325-4 (cloth); 0-19-517147-0 (pbk.)
1. Medical Ethics—United States—History. 2. Bioethics—United States—History.
1. Title.
R724.J657 1998
174'.2'0973—dc21 97-41154

9 8 7 6 5 4 3 2 )
Printed in the United States of America
on acid-free paper
Contents

Preface vii
Acknowledgments xv

Part I: Bioethical Beginnings: The People and Places

1. Great Issues of Conscience: Medical Ethics Before Bioethics 3
2. The Theologians: Rediscovering the Tradition 34
3. The Philosophers: Clarifying the Concepts 65
4. Commissioning Bioethics: The Government in Bioethics, 1974-1983 90

Part II: Bioethical Beginnings: The Problems

5. Experiments Perilous: The Ethics of Research with Human Subjects 125
6. Splicing Life: Genetics and Ethics 166
7. The Miracle of Modern Medicine: The Ethics of Organ Transplantation
and Artificial Organs 196
8. Who Should Live? Who Should Die? The Ethics of Death and Dying 233
9. O Brave New World! The Ethics of Human Reproduction 282

Part III: Discipline, Discourse, and Ethos

10. Bioethics As a Discipline 325
11. Bioethics As a Discourse 352
12. Bioethics—American and Elsewhere 377

Epilogue 406
Index 417
This page intentionally left blank
Preface

Bioethics is "the systematic study of the moral dimensions—including moral vision,

decisions, conduct and policies—of the life sciences and health care, employing a vari-
ety of ethical methodologies in an interdisciplinary setting."1 A systematic study, nec-
essarily, is carried out by scholars dedicated to thinking, writing, and teaching about a
subject. These scholars, now called "bioethicists," appeared on the scene in the late
1960s, usually as migrants from other academic disciplines, and developed bioethics as
a new way of viewing the traditional ethics associated with medicine. In the interven-
ing years, bioethics has attracted attention from the health professions and interest from
the public. The three professional associations for bioethics now count about 1,000
members; almost 200 centers, departments, and programs exist, most of them in aca-
demic institutions; and the 1996 Bibliography of Bioethics lists 3,620 books, essays,
and articles on bioethics.2
During the week this preface was being composed, the esteemed scientific journal
Nature reported that the bioethics "industry" was booming: governments and industries
were soliciting advice; and bioethicists were offering it—in commissions, at confer-
ences, and through scholarly literature and media comments. The author argued, how-
ever, that "despite their growing prominence, it is far from clear whether US bioethi-
cists have substantially shaped either the culture of science or the political decisions of
recent years."3 As the article elaborated this skeptical view, citing fragments of history
and quoting several self-depreciating bioethicists, it teetered on the edge of factual and
interpretative inaccuracies. It is not quite correct that "the new prominence of bioethi-
cists can be traced to the 1988 launch of the human Genome Programme." It is inaccu-
rate to state that bioethics was "cloistered 30 years ago in university departments of
theology and philosophy." It is not entirely true that the National Commission for the
Protection of Human Subjects of Biomedical and Behavior Research was "set up in re-
sponse to the 1972 revelation that the US had for 40 years funded the notorious
Tuskegee Syphilis Study." It is an exaggeration to claim that "everybody before would
have identified ...as theological literature" the earlier bioethical writings. And it is
questionable that "apart from a couple of early, significant, victories, 'it is hard to show
any concrete influence on policy by US bioethicists.'" Certainly, it is not easy to assess
the influence of bioethics, now some thirty years old, on thought, culture, policy, and
viii Preface

practice. Such assessments are haunted by the Missionaries' Fallacy: much preaching is
done and many converts counted but how many hearts and minds are won? Still, an as-
sessment demands an accurate historical recounting of why and how the field came into
being. It is time to write that history.
In 1992,1 invited sixty pioneer bioethicists to the University of Washington in Seat-
tle to recall the beginnings of bioethics.4 Everyone responded enthusiastically and
forty-six attended the conference, which I called "The Birth of Bioethics." Before an
audience of some three-hundred persons from various scholarly disciplines and from
the public, each speaker addressed a bioethical topic on which he or she had done origi-
nal work—death and dying, human experimentation, genetic engineering, reproductive
technology, and organ transplantation—and explained how they and that topic came to-
gether. The participants at this conference were pioneers in the most proper sense: they
blazed trails into a field of study that was unexplored and built conceptual roads
through unprecedented problems. They were the first settlers of a new medical ethics
that was named bioethics. Many of the ideas in this book were borrowed, with permis-
sion, from these colleagues.5
Despite the conference title, my colleagues and I knew that disciplines are not born;
they grow slowly, gradually taking a shape distinct enough to merit a name. In truth,
bioethics emerged in the years after World War II, beginning as an amorphous expres-
sion of concern about the untoward effects of advances in biomedical science and
gradually forming into a coherent discourse and discipline. Although it addressed ethi-
cal issues in medicine and science, bioethics diverged in striking ways from the dis-
course about morality and medicine, commonly called "medical ethics," that had run
through twenty-five centuries of Western history. The purpose of this book is to trace
the origins and evolution of the ideas and institutions that have acquired the name
"bioethics."

Bio of a Bioethicist

The biographies of the pioneer bioethicists and the birth of bioethics are entwined.
Turns in personal careers move with events in the surrounding world of medicine and
science and morality; the events are analyzed through the eyes of persons whose aca-
demic careers educated them to see those events in certain ways. Each of the early
bioethicists has his or her own story to tell. Uniquely personal as each would be, the
stories have some common features. Almost all of us are academics educated in the
classical disciplines that the medieval university bequeathed to modern higher educa-
tion: philosophy, theology, law, and medicine. Most of us were not interested in the eth-
ical issues in medicine and the biological sciences until we encountered an intriguing
problem that drew us closer to them. Most of us had to find our way in the foreign
world of medical science and health care, and win acceptability there. Many of us
opened new academic units that were often, but not exclusively, inside medical
Preface ix

schools. We began to meet at conferences and symposia and on panels. We wrote and
lectured and taught, leaving a record of our reflections that grew into a literature and a
field of discourse that now has a name and a place in the academic and public policy
world. I judge, then, that it is not inappropriate to begin this book with my own story.
My autobiography, like those of my colleagues, reveals in a personal way how bio-
ethics came to be.6
I was born in San Francisco, California, in 1931 and, like many a well brought-up
Catholic boy of that era, I was convinced that I had a vocation to the Catholic priest-
hood. I entered a seminary of the Society of Jesus (Jesuits) as an eighteen-year-old
novice and over the next thirteen years I enjoyed a splendid classical education. I read
Latin, Greek, and English literature, studied ancient, medieval, and modern philosophy,
did a little science and a lot of biblical and scholastic theology. After taking my Mas-
ter's degree in philosophy, with a heavy concentration on Aristotle, Aquinas, and Mari-
tain, I was assigned for three years to teach philosophy at a Jesuit college, Loyola Uni-
versity of Los Angeles. I then entered theological studies, and after my ordination to
the priesthood, my superiors acceded to my request to study religious ethics in an ecu-
menical context. In 1964,1 began doctoral studies at Yale University's Department of
Religious Studies.
My professor at Yale, James M. Gustafson, was an ecumenical theologian, learned
not only in his own Protestant tradition but also in Roman Catholic moral theology.
Professor Gustafson had noticed the ferment of ideas that was beginning to boil around
advances in the biomedical sciences, particularly in genetics and the neurosciences. In
a 1970 essay he wrote: "The 'new biology' and developments in medical science and
technology have aroused a great deal of public interest. Nothing less than the future of
human development seems at stake."7 Although Professor Gustafson called his stu-
dents' attention to these questions, we did not concentrate on them. We were absorbed
in the theoretical realms of theological ethics, reading the masters—St. Paul, St. Au-
gustine, St. Thomas, Luther, and Calvin and the moderns, Barth, Brunner, Tillich, and
the Niebuhrs. Still, from Professor Gustafson's students came many of the pioneers of
bioethics.
Two chance encounters drew me toward the nascent bioethics. The first took place
on a May day in 1967, when I delivered my doctoral dissertation to Yale's Hall of
Graduate Studies.8 Stepping onto the street with a fine feeling of relief, I met a friend,
Dr. F. Patrick McKegney, who directed the psychiatric liaison service at Yale-New
Haven Hospital. Dr. McKegney invited me to lunch at Morey's to celebrate the com-
pletion of the great labor. During lunch he said, "You've been reading and writing all
this theoretical stuff about ethics. Why not come down to the hospital and I'll show you
what an ethical problem really looks like."
I accepted his invitation and accompanied Dr. McKegney, as a sort of ethical intern,
over the next two months. He had recently encountered a problem that he considered
truly ethical and truly unique: some patients whose lives were maintained by the new
process of chronic hemodialysis wished to "turn off the machine" and be left to die. He
x Preface

and others who had encountered the problem wondered whether this decision was
equivalent to suicide and whether a physician who acceded to it became an accomplice.
As a psychiatrist he asked whether "dialysis suicide" was, as many suicidal wishes are,
a psychopathology or whether, given the unprecedented situation of chronic life sup-
port, it should be analyzed differently. McKegney explained the problem to me and
asked me to reflect on it. I discovered that a small literature had only recently accumu-
lated about the ethical problems of chronic hemodialysis. I learned the story of the
Seattle Artificial Kidney Center around which many of those problems revolved. I
never imagined that twenty-five years later, I would be a faculty member of the medical
school where chronic hemodialysis had originated and be a friend of its originator, Dr.
Belding H. Scribner.
After the ecumenical experience at Yale, my Jesuit superiors re-immersed me in
Catholic theology with a year at the Institut Catholique in Paris and the Gregorian Uni-
versity in Rome. They then assigned me to teach moral theology and philosophical
ethics at the University of San Francisco (USF). Again, a chance meeting revived my
interest in medical ethics. I met Dr. J. Engleburt Dunphy, Chairman of the Department
of Surgery at the University of California, San Francisco (UCSF) at a dinner party in
1969. Dr. Dunphy asked me what I did. When I responded that I taught ethics at USF,
he exclaimed, "Terrific! We have a serious ethical problem in medicine—how is death
defined?" When I commented that doctors, if anyone, should know the answer to that
question, he told me that the growing practice of organ transplantation was forcing re-
consideration of the criteria for declaring death. A committee at Harvard Medical
School had suggested a "brain death definition" during the previous year and the UCSF
Medical School had formed a committee to evaluate the Harvard definition. If the com-
mittee judged the definition suitable, it would adopt it for use in the new UCSF renal
transplant program. Would I join the committee as a consultant? I did so eagerly (and
ignorantly) and, during a year of evening meetings with a small group of physicians,
learned about neurology, organ transplantation, and the conceptual confusion that sur-
rounded life's ending.
During my graduate studies and my tenure at USF, very real ethical problems were
agitating the national conscience. Persons who chose to study academic ethics, philo-
sophical or religious, could not immure themselves within classical treatises. The Civil
Rights movement stirred passions. In March 1965, several of my fellow Jesuits at Yale
and I were preparing to travel to Selma but were deterred by news of the savagery at
the Pettus Bridge. Sentiment against the war in Southeast Asia grew during the late six-
ties and had reached fever pitch by the time I was a professor at USF. Many of my stu-
dents sought my advice about conscientious objection to military service. This was a
peculiarly difficult problem for Catholics. Roman Catholic theology taught a doctrine
of "just war": warfare was ethically justified under certain conditions. American courts
had recognized conscientious objection only for the traditional "peace churches," such
as the Quakers and the Mennonites, which repudiated all warfare. I served as confessor
and advisor to many of these perplexed young Catholics. I knew how complex the
Preface xi

moral issue was because my graduate student colleague, Jim Childress, had written a
brilliant dissertation on conscientious objection. My uncle, Federal Judge William T.
Sweigert, was among the first to declare the war unconstitutional.9So, during my first
year as a student and teacher of ethics, I became deeply and personally engaged in very
real ethical issues. As we shall see, many of the early bioethicists had similar experi-
ences.
My internship with Dr. McKegney in the wards of Yale-New Haven Hospital, sup-
plemented by my service with the UCSF brain death committee, had started a transmu-
tation from ethicist to bioethicist. I actually became a bioethicist—with a title and a
salary—in the spring of 1972. Dr. Philip R. Lee, Chancellor of the University of Cali-
fornia, San Francisco, the senior medical school of the University of California, invited
me as visiting professor to a newly established UCSF Institute of Health Policy. I ea-
gerly accepted, and with my Jesuit superior's permission, moved across Golden Gate
Park from the USF to UCSF. I spent my year as visiting professor doing more learning
than professing. Suspecting that I might want to specialize in this field, I attended lec-
tures with the medical students, dissected a cadaver in the anatomy course, and joined
discussions about health policy and about the evolving forms of medical care. I con-
versed with two eminent figures in medical ethics, Dr. Otto Guttentag and Dr.
Chauncey Leake, "senior statesman of medical ethics."10
At the end of the year, the Dean of the School of Medicine, Dr. Julius R. Krevans, of-
fered me the position of Adjunct Associate Professor of Bioethics at the Medical
School. A professor of bioethics was an odd creature. Only one other ethicist was ap-
pointed to a medical faculty, K. Danner Clouser at Penn State Hershey Medical School.
Bioethics was not a recognized academic field. There was no curriculum and the litera-
ture was sparse. Even the world "bioethics" caused confusion; not only was it a neolo-
gism but it also invited association in the San Francisco Bay Area where I lived with
the biorhythms and biofeedback and macrobiotics that had become the cant of the New
Age philosophies burgeoning there. My task at UCSF was not to impart the facts and
methods of an established discipline but to create something that would deserve acade-
mic respect and public recognition. I was now set on an academic track that led within
a few years to tenured faculty status within a leading medical school. I became a
bioethicist, just at the time bioethics was being born.
In 1975, I requested and was granted release from the vows of the Society of Jesus
and the Roman Catholic priesthood. I became a happily married layperson. I was
hardly alone; in those years, many Catholic priests no longer felt called to that voca-
tion. Several of the early bioethicists have a similar entry in their biography. Men
trained in ethics and experienced in helping persons deal with perplexing moral issues
were seeking a place in secular life. The opening world of bioethics provided that
place. I remained at UCSF until 1987, when I migrated to the Pacific Northwest to
become Professor of Ethics in Medicine at the University of Washington School of
Medicine.
xii Preface

The Scope of this History

The history of bioethics weaves together personal stories like my own with remarkable
advances in medical science and technology and with the social climate of the second
half of the twentieth century in the United States. The advances raised questions in the
minds of reflective persons and sometimes occasioned events that prompted wonder
and worry. That response was shaped by the attitudes about personal and social ethics
that prevailed in post-World War II America and by the deeper values of the American
ethos. Persons like myself, formed not only by those attitudes and values but also edu-
cated to reflect on them, hoped to shape the concerns into articulate questions that
could be carefully analyzed and sometimes even resolved. Bioethics is the systematic
study that works at this task. It is also a discourse—that is, the discussion and debate—
that surrounds the advances and events to which many parties contribute, from profes-
sionals to private citizens.
This book designates the forty years between 1947 and 1987 as the era during which
bioethics emerged as a distinct discipline and discourse. In 1947, the Nuremberg Tri-
bunal convicted twenty-three physicians of war crimes committed under the guise of
medical experiments, and it promulgated the Nuremberg Code. That event, dramatizing
the most egregious violation of medicine's traditional ethic, opens my history because
it initiated an examination by professional persons in science, medicine, and law of one
of modern medicine's central features: scientific research. The next two decades were
prologue to bioethics, during which questions accumulated and scientists, physicians,
and sometimes the public expressed genuine but diffuse concern about the ethical prob-
lems raised by medical and scientific advances.
The opening chapter of this book recalls the long tradition of medical ethics that
precedes bioethics and the public expression of concern by many scientists during the
1960s. By the second half of that decade, these diffuse concerns fell under concen-
trated analysis by scholars trained not in the biomedical sciences but in the two clas-
sic disciplines that deal with ethics, theology and philosophy, and in several other
fields that dwell close to ethics, such as law and the social sciences. The second and
third chapters examine why these scholars were ready and willing to join the dis-
course and what they brought to it. The next chapter records how the United States
government became engaged in bioethics, drawing the reflections of scholars into the
realm of public policy. Five chapters are devoted to topics that became the focus of
bioethical analysis: research with human subjects, genetics, care of terminally ill per-
sons, organ transplantation, and artificial reproduction. Each of these chapters starts
long before 1947, in the conviction that the bioethical shape of these modern prob-
lems must be seen within the evolution of thought about their analogues in the past.
Two chapters reflect on the nature of bioethics as a discipline and as discourse. Fi-
nally, after a brief review of international bioethics, Chapter 12 places the four
decades of bioethics within the larger sweep of the American ethos, in the hope that
Preface xiii

this larger picture might explain why bioethics appeared in the United States during
the latter decades of the twentieth century.
Writers of history, I am told, should not get too close to the present, lest perspective
be lost. So I conclude this history at the end of 1987. This closure is arbitrary but rea-
sonable. I propose that the seeds of bioethics were sown and the seminal work of
bioethics accomplished during the forty years between 1947 and 1987 (one of those
nicely rounded-out eras that professors love). Those years show the medical and bio-
logical sciences advancing with astonishing rapidity and record many questions about
such wondrous advances. Bioethics is now firmly established in the world of academic
medicine, medical practice, and public policy. Since 1987, bioethics has taken on new
questions, new forms, and new methods. Its younger scholars are critically reviewing
the work of their teachers and undertaking new ventures in ethical methodology and
policy. All that will be told in the next history of bioethics.

Seattle, Washington A. R. J.
November 1997

Notes

1. Warren T. Reich, "Introduction," in Reich (ed.), The Encyclopedia of Bioethics, revised ed.
(New York: Simon Schuster Macmillan, 1995), p. xxi.
2. The American Association of Bioethics has 613 members (1997), the Society for Health
and Human Values has 842 (1995), and the Society for Bioethics Consulation, 149 (1995). These
organizations have many overlapping members yet when all three combined into the American
Society for Bioethics and Humanities in 1998 some 1500 persons enrolled. Centers are listed in
Anita Nolen and Mary Carrington Coutts (eds.), International Directory of Bioethics Organiza-
tions (Washington, D.C.: Kennedy Institute of Ethics, Georgetown University, 1993) and litera-
ture is referenced in LeRoy Walters and Tamar Joy Kahn. Bibliography of Bioethics, vol. 22
(Washington, D.C.: Kennedy Institute of Ethics, 1996).
3. Meredith Wadman, "Business booms for guides to biology's moral maze," Nature (1997),
389: 658-659; Editorial, "Trust and the bioethics industry," p. 647.
4. The pioneers were selected from those persons still living and working in bioethics whose
publications were listed in the first edition of LeRoy Walters (ed.), The Bibliography of Bioethics,
vol. 1 (Detroit: Gale Research Co., 1975).
5. "The Birth of Bioethics: A Conference to Celebrate the Past 30 Years of Bioethics in the
United States." University of Washington, September 23-24, 1992. A summary of the conference
appeared in Albert R. Jonsen (ed.), "The Birth of Bioethics," Hastings Center Report, suppl. 23,
no. 6(1993).
6. The biographies of many of the leading figures in American and European bioethics are re-
lated in Sandro Spinsanti, La bioetica. Biographic per una disciplina (Milan: Franco Angeli,
1995).
7. James M. Gustafson, "Basic ethical issues in the bio-medical fields," Soundings 53, no. 2
(1970): 151-180, p. 151.
xiv Preface

8. Albert R. Jonsen, Responsibility in Modern Religious Ethics (Washington, D.C.: Corpus

Books, 1968).
9. James F. Childress, Civil Disobedience and Political Obligation: A Study in Christian So-
cial Ethics (New Haven: Yale University Press, 1971); Mattola v Nixon 318 F. Supp 538 (ND Cal
1970).
10. This accolade was awarded to Dr. Leake by Paul Ramsey in Patient as Person (New
Haven, Yale University Press, 1970), p. xv. Leake's story is told in Chapter 1; Dr. Guttentag ap-
pears in Chapter 5.
Acknowledgments

This book was conceived after a conference "The Birth of Bioethics," held at the Uni-
versity of Washington, September 23-24, 1992. Many of the pioneers of bioethics were
present to tell their stories about the origins of the field and they all gave me permission
to use their remarks as building blocks for this book. Many other pioneers welcomed
interviews. I thank them all and apologize if I have distorted their words. I thank the
readers who reviewed all or part of the draft: Darrel Amundsen, Robert Baker, Dan
Callahan, James Childress, Maurice de Wachter, James Gustafson, Diego Gracia, John
Ladd, Richard McCormick, Jonathan Moreno, Sandro Spinsanti, Robert Veatch, James
Whorton, and one anonyme. All added to clarity, correctness, and conciseness. The
staff of the National Reference Center for Bioethics Literature at Georgetown Univer-
sity responded generously to requests for documents difficult to find. My graduate as-
sistant, Kelly Edwards, hunted indefatigably for sources and references; Lauri Shannon
and Barron Learner helped with research. Toni Reinicke gave invaluable assistance in
formatting the text. Jeffrey House of Oxford University Press, was encouraging and ju-
diciously critical. My wife, Mary Elizabeth, is my best editor. The time and resources
to write this long book were a gift from the John Simon Guggenheim Foundation,
which granted me a prized Fellowship for 1995-96, and from the Charles E. Culpeper
Foundation, whose support of medical history is unique. I appreciate the sabbatical pro-
vided by the University of Washington and the people of Washington State, which still
understands that good teaching flows from the leisure for study. To all, my gratitude!