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The birth of bioethics.

Albert R. Jonsen, ed., "The Birth of Bioethics," Special Supplement, Hastings Center Report 23, no. 6 (1993).

On 23-24 September 1992, "The Birth of Bioethics," held at the University of Washington, Seattle, gathered many of the "pioneers" of the new ethics of medicine to review its history and project its future. A pioneer was defined as one whose name had appeared in the first edition of the Bibliography of Bioethics (1975) and who had continued to work in the field. Some sixty persons made the cut and, of these, forty-two came to Seattle.

The occasion of this conference was the thirtieth anniversary of the publication of an article in Life magazine, "They Decide Who Lives, Who Dies" (9 November 1962). That article told the story of a committee in Seattle whose duty it was to select patients for entry into the chronic hemodialysis program recently opened in that city. Chronic dialysis had just been made possible by Dr. Belding Scribner's invention of the arteriovenous shunt and cannula in 1961. It quickly became apparent that many more patients needed dialysis than could be accommodated. The solution was to ask a small group, composed mostly of nonphysicians, to review the dossiers of all medically suitable candidates and sort out those who would receive the lifesaving technology. Thus, the committee was faced with the unenviable task of determining suitability on grounds other than medical. Should it be personality? finances? social acceptability? past or expected contribution? family dependents and support? While the committee was anonymous, word of its existence appeared in the New York Times. Life correspondent Shana Alexander travelled to Seattle to cover what she described at the "Birth of Bioethics" as "the most fascinating story of [her] career."

As professor of ethics in medicine at the University of Washington, I thought that the thirtieth anniversary of the appearance of that article was worth commemorating. My university would claim a birthright and, more seriously, those who had worked for some years in bioethics could reflect on the origins and the evolution of our work. Quite shamelessly, I entitled the event "The Birth of Bioethics" although, as any decent historian knows and as many of the conference participants declared, dating the time and place when any social movement begins is perilous and near impossible. Still, the interesting events in Seattle were worth recalling, and the features of those events that presaged the full-grown bioethics movement were worth pointing out. Whether the Seattle events were a birth, a conception, or merely a gleam in someone's eye, I thought it a good time for the early workers in the field to gather, reminisce, and perhaps, begin to make a history.

Bioethics has matured into a minor form of moral philosophy practiced within medicine. Today, soundly reasoned articles on a variety of ethical questions appear regularly in the major medical journals. In almost every American medical school, students study, in one form or another, the new medial ethics. Twelve thousand persons subscribe to the Hastings Center Report. Ten "special government employees" of Hillary Rodham Clinton's Health Care Task Force were identifiable as bioethicists. The effect of these developments on medicine and health care has been remarkable. The first historian of the bioethics movement, Professor David Rothman of Columbia University, writes in his Strangers at the Bedside:

The record of bioethics' influence

... makes a convincing

case for a fundamental transformation

in the substance as well

as in the style of medical decision

making.[1]

Where did this new ethics of medicine, or bioethics, come from? What events occasioned its origins? What form has it taken? Who elaborated it? Who pays attention to it? What is its significance for modern medicine, health care, and health policy? Those who work in this new field are only now beginning to reflect on these questions. Rothman's history is the first contribution; my own book, The New Medicine and the Old Ethics, also attempts some answers.[2]

Rothman describes bioethics as a movement. Movement takes place because from time to time an impetus is imparted to an inert body. The issue in the debate over the Seattle committee was the contemporary echo of an ancient Hippocratic phrase: "into whatever houses I enter . . ." The modern nephrologist, armed with the new expensive dialysis machine, could not enter every house where help was needed. What standards should determine the choice of houses? The standard that had often served in the past, namely, the quality of the neighborhood and the wealth of its inhabitants, seemed no longer appropriate. America in the 1960s had become acutely aware of discrimination as a social problem. Why should a new medical advance create a new medical discrimination? Who should set the standards? The authorities of the past, namely physicians, seemed inadequate. Fairness in selecting candidates for medical treatment is not, in itself, a medical skill. Laypersons, it was thought, would do it as well, or as poorly, perhaps even better than physicians, since they would be free of bias in favor of one's own patients.

Thus, starting in the early 1960s, a radically new problem appeared. It stimulated unprecedented public interest and engaged the attention of persons hitherto remote from medical discussions, who began to create a literature about the problem. Finally, it led to a radically new solution: the delegation by physicians to laypersons of decisionmaking power about admission to a medical treatment. Rothman writes, "a group of physicians, in unprecedented fashion, turned over to a lay committee life-or-death decisions prospectively and on a case-by-case basis. A prerogative that had once been the exclusive preserve of the doctor was delegated to community representatives" (pp. 150-51).

The dialysis events of the early 1960s were an early impetus that nudged the world of medicine toward a realignment of its values. A second impetus came several years later. Henry Beecher, professor of anesthesia at Harvard Medical School, published an article in the New England Journal of Medicine entitled "Ethics and Clinical Research." In it he accused of unethical design and conduct twenty-two biomedical research studies that had appeared in leading journals. The article stirred up a hornets' nest. However, like any impetus, prior pushes had set the ball rolling. The Nuremberg trials in 1945 had revealed the terrible abuses, called medical experimentation, perpetuated by Nazi doctors on concentration camp prisoners. But, horrible as these were, the problem posed by medical research was deeper. It was not the maliciousness and callousness of scientists but the very nature of modern biomedical science that created the problem.

Modern biomedical science is by its nature innovative. It moves from observation and discovery to fresh observations and further discoveries by canons of evidence and statistical methods that require the manipulation of data. In addition, it works within a social milieu that demands of scientists constant productivity and consistent originality. The experiments of Buchenwald and Dachau took place, in part, because the scientific zeal of the perpetrators, aggravated by their racist arrogance, found "human material" at hand for their manipulations. Scientific research in its ordinary course is neither vicious nor racist, but it can find "human material" at hand in the vulnerable sick. Slowly, researchers began to sense, and the public began to demand, that studies be conducted in ways that not only advance science, but protect the rights and welfare of human subjects as well. Within four years of Beecher's article, the syphilis experiments carried on over several decades by the U.S. Public Health Service in Tuskegee, as well as several other research projects, made this clear. The Congress established the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research to recommend policies that would guide researchers in the design of ethical research. That commission, which sat from 1974 to 1978, engaged the help of a wide variety of scholars from many disciplines and solicited public opinion on many issues. Perhaps more than any other impetus, its work brought into being a discipline of "bioethics," with a literature filled with concepts such as autonomy of patients, standards for informed and proxy consent, and the equilibration of risks and benefits.

A third impetus came from the public response to another dramatic medical advance. In 1967, Christiaan Barnard transplanted a human heart from a dead (or dying) person into a patient with terminal cardiac disease. The world was astonished, but some wondered about the source of the organ. Was its source truly dead? Was the heart taken without regard to the wishes of its source while living? One leading medical editor wondered how we should think about "the use of borrowed organs." Kidney transplantation had been underway for some fifteen years, but heart transplantation pressed these questions more urgently. CIBA Foundation in England held a ground-breaking conference, "Ethics in Medical Progress with Special Reference to Transplantation." Almost all participants were physicians and scientists. Within a few years, such a conference would be unthinkable without philosophers and theologians. After all, these scholars could say, our disciplines have meditated on life and death long before modern science was conceived. By 1968 a Harvard Medical School committee, headed by Beecher, proposed a definition of "brain death" to close a question that Pope Pius XII had called open in 1958. A theologian sat on the Beecher committee, I myself, a college philosophy teacher, first entered the medical world when invited to sit in on a similar "brain death" committee at the medical school of the University of California, San Francisco.

Several prominent theologians had not been oblivious to these developments in medical science and health care. One very prescient figure, the Episcopal theologian Joseph Fletcher, had written a book in 1954, entitled Morals and Medicine, unlike any previous book on that subject.[3] While Catholic theologians had long discussed such questions as euthanasia and abortion, Fletcher departed from the usual theological analysis to stress the freedom and authority of the patient. This viewpoint led him to expound remarkably liberal positions about euthanasia, truth-telling, and patients' rights. In 1970 another theologian, Methodist Paul Ramsey, was curious enough about the changes in medicine to spend a year in the clinics and on the wards of Georgetown University Hospital. His book, The Pat t as Person, was an insightful (though dense) analysis of the ways in which the new medicine was modifying the moral dimensions of the relationship between patient and physician.[4] If we think of bioethics as an academic discipline rather than a popular movement, we might choose a work of scholarship as its origin. That work would certainly be Ramsey's book.

The definition of death by brain criteria was novel and somewhat contentious, yet it won quick public approval because of its utility: it promised more organs for lifesaving transplantation. Death captured the public's attention in yet another way. The near death of a young New Jersey woman named Karen Ann Quinlan in 1975 became a public spectacle. Karen Ann's parents, convinced that their daughter would never recover consciousness, asked that life support be removed. Their plea, rejected by doctors and hospital, eventually was sympathetically heard by the New Jersey Supreme Court. In the first legal case about life support ever adjudicated, the court recognized the problem posed by the new life-support technologies that had evolved over the past twenty years: organic life may continue, but human living "in a conscious, sapient condition" may be forever lost. Other cases, both similar to Karen Ann's and, even more agonizing, about tiny premature infants kept alive only by machinery, began to be debated. Again, the philosophers and theologians contributed wise words to the debate. Hospital policies about orders not to resuscitate, public law about advance directives, and the endorsement of hospice care for the dying came out of that debate.

Again, the echo of the Hippocratic phrase could be heard, "I will enter only to benefit the sick." This ancient admonition, followed by good doctors for centuries, had become difficult to apply in the setting of modern medicine. The respiratory, renal, and cardiac technologies that had come into being during the postwar era could produce wondrous physiological effects. It was not always clear, however, that those effects were benefits for the patients in whose body they were produced. The debates over the artificial heart, first implanted in the Seattle dentist Dr. Barney Clark in 1982, made that paradox clear to everyone concerned. Prolongation of life is too simple a measure of benefit. The difficult concept of "quality of life" cried for recognition, yet the discriminatory potential latent in its application made even the experts hesitate. Indeed, the ill-advised "Baby Doe Regulations" issued by the government to regulate the care of newborns rejected the concept totally, categorically ordering (and wishfully thinking) that "medical treatment decisions are not to be made on the basis of subjective opinions about the future |quality of life' of a retarded or disabled person."

By the beginning of the 1980s, the bioethics movement was well underway. Professorships had been established in many medical schools. Many health professionals had become amateur bioethicists by sitting on institutional review boards and hospital ethics committees, and by attending workshops and seminars. Courts acknowledged the ideas and arguments crafted by bioethicists. Bioethics was a creation of the times. It was conceived as a response to the new technologies in medicine, but it was gestated in a culture sensitive to certain ethical dimensions, particularly to the rights of individuals and their abuse of powerful institutions. Health care had become a powerful institution, with powerful technologies. The needs and preferences of patients had to be asserted vigorously. The first decade of bioethics as a movement and discipline did just that.

Whether its birthday was 9 November 1962, the date of the Life article about the Seattle committee, or 16june 1966, the day Beecher's article on the ethics of research appeared in NEJM, or 31 March 1976, when the New Jersey Supreme Court rendered its decision In the Matter of Karen Ann Quinlan, all these events pushed medical ethics out of its past into its future. Whether its conception was in Joseph Fletcher's fertile brain in 1954 or in Paul Ramsey's mighty intellect in 1970, or in the inspiration that struck Dan Callahan and Will Gaylin in 1969 to start The Hastings Center and, almost simultaneously, struck Andre Hellegers to start the Kennedy Institute for Bioethics in Georgetown, the ideas for bioethics were waiting to be heard.

Callahan said at the Seattle conference, "Bioethics is a native-grown American product." Modern bioethicists react to medicine, medical technology, and health care services with peculiarly American concerns about the fights of individuals, fairness and equity in access to benefits, and secularized reflections about death, abortion, suffering, and aging. Additionally, as Callahan also noted, the resolution of many of these problems had been peculiarly American, namely, the devising of regulations and guidelines. Medical historian Stanley Reiser also noted that our response to the fear of technology beyond control has been the fashioning of new technologies, such as the living will, to save us. Medical historian Dan Fox went further, suggesting that the "history of arms control is to the defense sector of our country what the history of bioethics is to health care.... Arms control intellectuals and bioethicists have been mediators between the ideologies and the technical fantasies of the professionals on the one hand, and the most adamant, uninformed advocates of civilian control on the other." In a uniquely American style, we create a class of mediators to fashion a mean between the extremes.

The mediators came, almost all of them, from the traditional disciplines of theology and philosophy. There were a few physicians, a few lawyers, and an occasional social scientist, but early bioethics was fashioned out of bits and pieces from moral philosophy and moral theology. By now, modern bioethics has shown medicine the utility of philosophical thought about ethical problems. At the same time, the style and content of American philosophy has been changed by its encounter with medicine, as the philosopher Stephen Toulmin's provocative title, "How Medicine Saved the Life of Ethics," announced.[5] Philosophy no longer gazed impassively and imperiously on the confused world of medical decisionmaking. It entered that world and struggled to shape the logic of moral judgments. Its theories about the nature of morality and moral reasoning were revivified. At the same time, philosophy realized that it had no answers to the questions asked by physicians and patients. Rather, it began to speak with them about the larger, wider dimensions of what they saw as their problems. It helped place them, as we often say, "in a context" of personal needs, preferences, and rights, as well as of social constraints and possibilities. This became a program of spelling out in detail the implications of seeing "the patient as a person," badly needed when the patient had become "an organ," or a "statistic," or even a "consumer."

Many of the pioneers who gathered at the Seattle conference commented on the success of bioethics as, in Callahan's words, "a friendly, not hostile force within medicine." Yet, many of the attendees also worried about this. Had the critical edge that Ramsey honed in The Patient as Person, warning about the moral dangers of unreflective acceptance of medical advance, become only the moral enthusiasm about medical progress manifested in the thinking of Joseph Fletcher? George Annas wondered whether bioethics has been coopted by medicine. Has bioethics, in Rothman's words "rather heroic" in its early days, slipped into, as Arthur Caplan colorfully phrased it, "sway-bellied middle age, looking pretty institutional, with its people talking ex cathedra and flexing their expertise"?

It would be a shame if that were so, because so much remains to be done. Medical progress goes on, and the perils of progress must be heeded. Jay Katz, physician, law professor, and ethicist, who heroically pulled the ethical problems of human experimentation into the light of critical scrutiny in the 1960s, praised "the vigorous and vociferous inquiries into bioethics that can only cheer a person who long ago tried to pierce the silence." Critical, analytic, and even prophetic voices must greet each innovation in medical science and practice, lest the silence descend again. Modern medicine, as personal service or public enterprise, cannot afford to work in secrecy and silence. If it were to try to revive that comfortable secrecy, the silence would be broken perforce by threatening, destructive voices.

Today, bioethics as a discipline and a movement takes on the even newer medicine. The scientific changes in medicine that will come from the mapping of the human genome will raise unusual ethical questions. Those questions had been already raised less urgently by the evolution of genetic science and the development of screening and testing. They will become more pervasive and complex as we move toward the molecular medicine of the future. The early questions about fairness in selecting patients for the scarce resource of dialysis have been transformed into broad questions about justice in access to health care in general. The new forms for delivery and financing of health care services that are emerging from policy and politics have ethical implications about rationing, prioritizing, and the patient-physician relationship that cannot be ignored. The reproductive technologies that can modify traditional views of parenting and even of personhood require careful scrutiny. Today, unlike the days when the Seattle committee met for its fateful deliberations, concepts and methods, together with scholars and students, exist to help us undertake these examinations. Patients, physicians, and the public will demand these examinations and appreciate their open, reasonable, and fair resolution.

References

[1.] David J. Rothman, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making (New York: Basic, 1991). [2.] Albert R. Jonsen, The New Medicine and the Old Ethics (Cambridge: Harvard University Press, 1990). [3.] Joseph Fletcher, Morals and Medicine (Boston: Beacon Press, 1954). [4.] Paul Ramsey, The Patient as Person (New Haven: Yale University Press, 1970). [5.] Stephen Toulmin, "How Medicine Saved the Life of Ethics," Perspectives in Biology and Medicine 25, no. 4 (1982): 736-50.
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Author:Jonsen, Albert R.
Publication:The Hastings Center Report
Date:Nov 1, 1993
Words:3333
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