Medical Ethics, History of the Americas: II. The United States in the Twenty-First Century
II. THE UNITED STATES IN THE TWENTY-FIRST CENTURY
The field now called bioethics originated in the 1960s in the United States. It has its roots in the traditional medical ethics of Anglo-American medicine, in the cultural setting of American healthcare, and in certain social, religious, and moral perceptions that had emerged in the American ethos. This entry will first delineate the background for the development of bioethics and then relate the events, issues, and concepts that stimulated its growth during the latter half of the twentieth century (Jonsen, 1998).
The Culture of U.S. Healthcare
Bioethics, in the broad sense of the study of ethical problems encountered as humans interact with the biological within themselves and in their environment, comprehends much more than medicine and medical science. Nevertheless, the development of bioethics can best be understood against the background of the development of medicine in the United States from 1900. The twentieth century saw enormous growth in American medicine—in the amount of money devoted to medical care, the number of persons with access to care, the number of personnel and specialties, the complexity of institutional systems, and the extent of scientific technology. Three principal lines of development that contribute to the interest in ethical questions are the changing role of the hospital, the predominance of science and technology, and the development of specialization (Jonsen, 1998).
Beginning in the late nineteenth century, hospitals were founded at an increasing rate and eventually became the principal sources of medical care in the United States. As medical diagnosis and treatment increasingly involved elaborate techniques and devices, it was seen as more efficient and economical to centralize care in hospitals. Physicians could allocate their time more conveniently; nurses, technicians, and medical specialists could coordinate their work more effectively. Communities desired hospitals as a matter of pride; cities needed hospitals for indigent patients. The passage in 1946 of the Hill-Burton Act, which provided federal support for local hospital construction, and the tendency of the newly popular health insurance to reimburse hospital care rather than office or home care accelerated the evolution of the hospital in the United States (Rosenberg; Stevens, 1989).
With seminal discoveries in bacteriology, pathology, and physiology during the nineteenth century, scientific medicine came into its own. But it became an integral part of medical practice in the United States only after the extensive reorganization of medical schools in the decades around 1900—a period marked by the vigorous efforts of the American Medical Association to reform medical education and to improve the standards of medical practice. Medical school reform was greatly stimulated by the Flexner Report,Medical Education in the United States and Canada, sponsored by the Carnegie Foundation for the Advancement of Teaching. Scientific investigation, increasingly supported by the federal government, especially during and after World War II, brought research physicians into medical education and patient care. Experimentation involving human subjects, both patients and health volunteers, became more widespread as the National Institutes of Health opened and sponsored clinical research centers in the 1950s. The twentieth century brought a "new" medicine, one profoundly shaped by the biological sciences. Diagnosis and treatment took on forms dictated by the scientific knowledge generated in the laboratory, tested in clinics, and assessed by statistical methods.
The fascination of scientific knowledge and techniques drew many physicians into narrower fields of concentration. The vastly increased body of knowledge became too much for individual physicians to master. Moreover, it became possible for physicians to build careers by performing procedures focused on limited aspects of patient care. Thus, scientific medicine fostered the growth of specialties. Specialty boards, organized to test and certify competence in the particular fields of medicine, were established in a variety of specialties and subspecialties, beginning in the United States with the Board of Ophthalmology in 1917 (Stevens, 1971). The social and economic status of physicians improved significantly during the first half of the twentieth century and American physicians gradually moved from middle-to upper-class status, which distinguished them in attitudes, lifestyle, and place of residence from many of their patients (Starr).
In general, the three developments described above set the scene for the ethical concerns that began to surface in the United States in the 1960s. The concentration of specialized medical care in hospitals encouraged an impersonal, organizational approach to medical care. While social, behavioral, environmental, and personal aspects of illness were not totally neglected, scientific medicine focused on the biological and physical aspects; complaints that physicians had lost the ability to care for "the whole patient" were increasingly heard. As scientific knowledge increased, teaching in the sciences tended to crowd other concerns from the basic medical curriculum. Specialization narrowed attention to particular organ systems and diseases, and patients were shuttled between a variety of specialists rather than cared for by the family doctor. Leading medical educators felt obliged to continually stress the more comprehensive view of medicine, but educational, economic, and professional pressures constantly obscured these calls. By the 1960s, physicians, formerly close and familiar to their patients, had become "strangers at the bedside." This alienation was an important impetus for the emergence of bioethics (Rothman, 1991).
Social and Cultural Trends
In addition to these directions within medicine, cultural and social movements involved the public in the ethics of medical care to an unprecedented extent. The mass media stimulated public interest in medicine. By emphasizing new discoveries, dramatic incidents, and "human interest" stories, the media underlined growing tensions between complex medical technology and its humane use. Growing urbanization and the consequent uneven distribution of population heightened existing obstacles to healthcare. A higher standard of living and increased educational achievement for many increased the sophistication of patients. Growing support of biomedical research by the federal government during the 1950s and 1960s thrust research into the realm of public policy. The ability of persons to purchase healthcare, dramatically improved by the introduction of employment-based insurance in the 1930s and augmented for the poor and the elderly by the passage of Medicare and Medicaid in 1965, gradually began to erode. Healthcare in the United States, while technically superb, became extremely costly and, because of its cost and organization, excluded large numbers of Americans from adequate care. This situation had evolved into a social and political crisis by the late 1980s. No resolution had been found as the twenty-first century opened.
The slow but incessant influence of consumerism, from the concern about adulteration of food in the early decades of the twentieth century to the militant demands for consumers' rights in the 1970s, began to influence the healthcare system. The patients'-rights movement in the 1970s was a segment of a larger movement for civil rights. The women's movement brought attention to the care of women patients and the distribution of women professionals in healthcare. These movements heightened sensitivity to the unmet healthcare needs of women and people of color. The issues of birth control and abortion divided the public on the role of health professionals in family and population policies. Medicine began to draw practitioners from a culturally broader population, and many new allied health professions and technical specialties were added to the healthcare team, enriching and intensifying debates over values among healthcare providers. The peace movements of the 1960s and 1970s and growing ecological movements drew attention to burgeoning international health problems arising from war, environmental hazards, and pollution (McCally and Cassel; Leaf). These concerns challenged the role of medicine in maintaining the overall health and well-being of Earth's population. Physicians for Social Responsibility was founded in 1971, on the premise that the health risks of nuclear armaments fell within the social responsibilities of physicians. Although threats to the global biological environment emerged as major research and political concerns in the 1970s, the study of ethical issues in these areas remained rather separate from the study of ethical issues in medicine and health sciences (Geiger; Jonsen and Jameton; Cassel and Jameton).
These social and cultural trends, together with the direction of the biological and medical sciences, were the background for the bioethics movement that began in the 1960s. Bioethics as it is known today had its roots in general public concerns over issues of individual rights, social justice, and environmental quality that marked American culture in that era. Before examining the bioethics movement itself, it is advisable to examine the ideas, activities, and interests that were its precursors.
Traditional Medical Ethics
The effort to establish a unified medical profession during the nineteenth century and the accompanying internecine strife among physicians of various doctrinal allegiances profoundly influenced the nature and content of medical ethics at the opening of the twentieth century. Although strains of the Hippocratic, medieval, and Enlightenment tradition were invoked, the dominant themes stressed the respectability and collegiality of the profession and detailed the etiquette of professional relationships that promoted those themes. At the beginning of the twentieth century, this goal of a unified profession was within reach. The American Medical Association (AMA), through the strenuous efforts of its chief spokesman, Joseph McCormack, represented the profession as dedicated to orthodox scientific medicine, the advancement of medical education, the elimination of quackery, and the promotion of public health, particularly through support of pure food and drug legislation (Burrow, 1977; Jonsen, 2000; Baker et al.).
One crucial mandate of professional ethics—that ethical physicians did not consult with or refer patients to unorthodox practitioners—was firmly in place in the early twentieth century. Decades before the turn of the century and for several decades afterward, many ill-trained or untrained persons practiced "medicine." A vast number of substances and devices were promoted as cures for various or all disorders. A strong public voice favored freedom of choice of practitioner, claiming that the "scientific" practitioners and drugs offered nothing better than their untutored and untested competitors. Others, particularly the more educated practitioners, set out to discredit quacks, nostrums, and patent medicines.
This concern stimulated the debate among physicians over cooperation between physicians and "irregular" practitioners. Many regular physicians refused to treat patients who had received prior treatment from irregulars; medical society codes of ethics barred irregular practitioners from society membership, hospital admitting privileges, and joint practice with regular practitioners (Gewitz). During the years before World War I, the AMA led a fight that finally persuaded state legislatures and Congress to pass legislation controlling the practice of medicine and the sale of drugs. Midwives were among the targets of the campaign against quackery, and despite better health outcomes by many midwives at the turn of the century, the campaign for "scientific" practice won public support and midwives have been largely displaced by obstetricians (Leavitt). During the era before World War I, medical ethics appeared to some as exclusively concerned with the criteria that restricted practice to "orthodox" physicians. While self-interested motives can be imputed to organized medicine, many repudiated the "freedom of choice" argument out of the sincere concern that medicine "at least do no harm" (Burrow, 1977). Still, as many commentators have noted, medical ethics, in this matter, served the ends of medical monopoly (Berlant).
A second important question about consultation and referral was vigorously debated: whether referring physicians were entitled to a fee or "kickback" for having sent a patient to a specialist or consultant. This practice was particularly common in surgery. Some surgeons solicited patients through general practitioners who, in turn, found it lucrative to refer patients who sometimes did not require surgery. The abuses of fee splitting scandalized the public and many professionals. The American College of Surgeons, founded in 1915, required its fellows to take an oath that explicitly repudiated fee splitting. Although branded by all professional organizations as unethical, this practice continued in a covert way for many years (Davis).
Perhaps the most agitated debate in traditional medical ethics during the first half of the twentieth century was over the integrity of the patient–physician relationship. Fee-for-service practice by solo practitioners who sought to develop their own followings of patients was the predominant model. However, some "contract practice," in which a physician undertook to provide unlimited service to a designated population for an agreed amount, had long existed. Plantations in the American South had used this method for the medical care of slaves. Fraternal organizations formed by immigrant populations had insured their members in this way, and in the West, the railroad and lumber industries contracted with physicians to care for their workers. Many in the organized profession, however, objected to contract practice, condemning it as "cut-rate medicine," as inferior to private practice in the quality of care and personal relation-ship, and as allowing a "third party" to dictate conditions of care, to the possible detriment of the patient. The same objections met the forms of group practice that evolved from contract practice in the first half of the twentieth century. Bitter battles raged over these issues; many medical societies excluded physicians who were involved in these "schemes." A series of antitrust decisions by the U.S. Supreme Court, beginning in the 1940s and continuing into the 1970s, gradually cleared the way for the development of a variety of corporate practice forms, such as health maintenance organizations, that a few decades before would have been considered unethical forms of medical practice.
Another ethical issue was closely related: the debate over payment for medical care. The traditional ethics had required physicians to charge their patients fairly and to provide free or discounted services to those who could not pay. The emergence of free public clinics and hospitals in the late nineteenth century threatened that ethic. Many physicians claimed that even patients who could pay sought free care, draining the physicians' practices and making it impossible for them to provide charitable services, because they needed a steady income from paying patients to be able to afford to provide such services. Thus, at the turn of the century, extensive public use of free clinics was debated as an ethical question. Some argued that it was conducive to continued pauperization; others claimed that forcing poor people to pay for needed medical care was immoral. Some practitioners opposed free clinics because they viewed them as unfair competition by medical schools, which they saw as using free clinics to obtain patients for medical education. At the same time, the organized profession realized that the costs of care were beyond many persons and that physicians' incomes were low. Initial support was given to proposals emanating from organized labor for government-supported compulsory health insurance. By 1916, a broad coalition of organized medicine, labor, and social reformers had almost achieved the passage of national health insurance. World War I intervened, and the coalition was weakened: National health insurance seemed a "Germanic" proposal to many (Germany had long had such a program) and "socialistic" to others. Organized medicine, from then on, firmly opposed almost all forms of government health insurance. Again, it was proclaimed that because this would interpose government between doctor and patient, such programs would be unethical. This opposition persisted down to the passage of Medicaid and Medicare in 1965 (Marmor; Fein).
The AMA revised its 1847 Code of Ethics in 1903, 1912, 1947, 1957, and 1980. The revisions, successively more succinct, reflected an increased sense of professionalism and ideals about the scientific excellence of the practitioner. At the same time, the professional ethics expressed in official codes and in the positions taken by organized medicine on social questions reflected an interest in maintaining the status quo of the profession and the practice of medicine as it had been evolving in the late nineteenth and early twentieth centuries. With few exceptions, such as increased tolerance for group practice, the 1957 revision of the AMA Code, which consists of a condensation into ten "principles of medical ethics," bears little evidence of the major social changes that had begun to affect medical care in the United States. In 1985 the AMA Judicial Council changed its name to the Council on Ethical and Judicial Affairs; it now issues regular statements on issues of current ethical import, such as euthanasia, the obligation to care for patients with AIDS, and financial conflict of interest. Many major medical organizations, such as the American College of Physicians and the American Academy of Pediatrics, have formed ethics committees with a similar purpose. Although commentaries and informal codes on the conduct of nurses can be found as far back as the inception of the profession by Florence Nightingale (1820–1910), the American Nurses' Association did not adopt an official code of ethics for nurses until 1950.
Thus, during the first half of the twentieth century, medical ethics consisted of professionally devised propositions to enhance the unity and monopoly of the profession. Professional self-interest sometimes hid behind ethical claims that were often to the detriment of the public. At the same time, the profession, in encouraging improved medical education and advocating public health and safety measures, lived up to its more noble traditions (Jonsen, 1990).
The Influence of Theological and Philosophical Ethics
The medical profession in the United States imbibed an ethic from the Judeo-Christian culture of the nation. The ethical physician was expected to be respectful of religion and to be a "good Christian gentleman" (Burns, 1977). The dominant Protestant culture offered some admonitions about health and medicine. For example, in the nineteenth century physicians of strong Protestant faith urged the enactment of strict laws against abortion (Mohr). Nevertheless, theological ethics was relatively silent on particular issues concerning medicine and health.
Roman Catholic moral theology, however, had a long tradition of concern with moral questions in medicine. Since the seventeenth century, principles of Scholastic philosophy and theology had been applied to such issues as abortion, sterilization, and the duties of physician and patient. Acute analyses had been made of the duty to sustain life and the circumstances under which the death of a patient could be permitted. This tradition was conveyed to students in the Catholic medical schools that were founded in the nineteenth century. Father Charles Coppens, S. J., lectured in the Medical Department of Creighton University at the turn of the century. His 1905 book, Moral Principles and Medical Practice: The Basis of Medical Jurisprudence, treated abortion, sexual behavior, and the duties of physicians in light of philosophical and theological principles. His work represented "the emergence of medical ethics as a medical school subject, especially at religiously affiliated schools" (Burns, 1980, p. 282). During the 1940s and 1950s, this tradition was carried on in the extensive writings of theologians Edwin Healy, Gerald Kelly, Charles McFadden, Francis Connell, and Patrick Finney. In 1949 the Catholic Hospital Association issued Ethical and Religious Directives for Catholic Health Facilities (revised in 1954 and 1971), which obliged all physicians and health professionals working in Catholic institutions to follow Catholic moral tenets with regard to a number of specific medical procedures (U.S. Catholic Conference).
Catholic reflection on medical moral issues continues in the Linacre Quarterly, published by the National Federation of Catholic Physicians' Guilds since 1932. Theologians Charles Curran, Richard McCormick, Kevin O'Rourke, Margaret Farley, and Lisa Sowle Cahill are now the principal voices of this tradition. The Catholic tradition, in its doctrine of natural law, has affirmed that moral questions can be analyzed from a philosophical viewpoint, without explicit reference to revealed theological truths. Thus, common ground can be found with those who do not share the Catholic faith. This somewhat nonsectarian approach has allowed Catholic analysis of problems to have a significant influence on the intellectual development of secular bioethics.
The Protestant denominations, while not producing a detailed analysis of medical-moral problems, had taken positions on such questions as suicide, euthanasia, abortion, and contraception. In 1950 Willard Sperry, dean of Harvard Divinity School, published lectures given at Massachusetts General Hospital and the University of Michigan Medical School under the title, The Ethical Basis of Medical Practice. He offered reflective, humane, literary, but unsystematic commentary on such problems as truth telling, prolongation of life, and euthanasia as the era of medical technology was opening. Four years later, Episcopal theologian Joseph Fletcher published the groundbreaking and prescient study Morals and Medicine. Fletcher's work was the first to emphasize the patient's rights as the center of an ethics of medicine and to argue "the ethical case for our human rights … to use contraceptives, to seek insemination anonymously from a donor, to be sterilized and to receive a merciful death from a medically competent euthanasist" (p. 25). He strongly asserted the patient's right to be told the truth about his or her diagnosis and prognosis. Fletcher's book is the pioneering work of the new medical ethics.
Sixteen years later, Methodist theologian Paul Ramsey produced the foundational work of bioethics, Patient as Person. Ramsey, professor of religion at Princeton University, took the unusual step of spending a year in intense dialogue with physicians, scientists, and students at Georgetown University and immersing himself in the clinical activities of the Georgetown University Hospital. Patient as Person, first delivered as the Beecher Lectures at Yale University in 1969, examined questions, such as organ transplantation, experimentation with human subjects, and the use of life-supporting technologies, that had not been on the agenda of previous commentators on the moral aspects of medicine. Although he spoke from a very different theological ground than did Fletcher, Ramsey also placed the freedom and rights of the patient at the center of his ethic but subsumed patients and physicians within the scope of a theologically defined covenant. Despite the theological tone and language of Ramsey's work, its cogent analyses of issues such as consent were widely influential (Ramsey, 1970b). At about the same time, James Gustafson of Yale Divinity School produced thoughtful essays on the implications of medical and scientific advances. Many Protestant theologians followed the paths laid down by these pioneers, among them Kenneth Vaux, William May, Harmon Smith, James Childress, and Stanley Hauerwas. In 1987 the Park Ridge Center for the Study of Health, Faith, and Ethics was founded under the auspices of the Lutheran Hospital Association to foster religious reflection on the issues of bioethics. The center has published a fine series of volumes describing the teachings about medicine and morality of major Christian denominations and other world religions (Marty; Vaux). The distinctive features of modern bioethics begin to appear in Fletcher and Ramsey: attention to the effects of new technologies, affirmation of the centrality of the patient as free and responsible agent, and the invocation of the concepts and method of moral analysis from the classical disciplines of theology and philosophy.
The Jewish faith has an ancient tradition of reflection upon questions of life, death, health, and medical care. Issues in medical ethics, such as allocation of scarce resources, risk–benefit evaluation, quality of life, abortion, contraception, and indications of death, are discussed in great detail in Talmudic literature. The doctoral thesis of Immanuel Jakobovits, published in 1959 as Jewish Medical Ethics, drew these teachings together and brought them into contact with modern scientific advances. In so doing, Jakobovits gave a distinct identity to a field of study that had not been previously singled out in Jewish scholarship. Talmudic scholars such as Moses Tendler, David Bleich, David Feldman, Elliot Dorf, Laurie Zoloth, and the physician Fred Rosner have continued this effort. The first course in Jewish medical ethics was taught by Rabbi Tendler at Yeshiva University in 1956, and the Institute for Jewish Medical Ethics was established in San Francisco in the early 1980s.
The influence of moral philosophy came rather late to the analysis of medical-moral questions. Although the first AMA Code of Ethics was strongly influenced by the English physician Thomas Percival (1740–1804), who was affected to some extent by the philosophers of the Scottish Enlightenment, American philosophers paid scant attention to these questions. In 1927 Chauncey D. Leake noted in his edition of Percival's Medical Ethics that all of the classic codes represented "medical etiquette" or the tenets of professional courtesy rather than medical ethics. "It is interesting," he wrote, "that writers on medical ethics have seldom availed themselves of the philosophical analyses of the principles of ethical theory made by recognized ethical scholars" (Percival, p.3). In words that predict the bioethics movement of the 1960s, Leake called for a medical ethics that would bring the systems of moral philosophy to bear on the problems of medical practice. He undertook to do this in a dialogue with philosopher Patrick Romanell (Leake and Romanell). Three decades later, moral philosophers were important figures in the elaboration of ethics of healthcare.
Secular academic philosophy did not find it easy to approach the practical problems posed by evolving science and medicine. In the 1950s philosophical ethics was struggling with the diverse theoretical challenges of naturalism, relativism, utilitarianism, Marxism, linguistic analysis, and positivism; hardly any attention was paid to the analysis of actual moral problems. This began to change in the 1960s as students vociferously raised questions about the moral legitimacy of the war in Southeast Asian and racial discrimination with their professors of moral philosophy. Interest in practical philosophy slowly appeared within academic philosophy. The questions of life and death raised by new technologies began to intrigue some philosophers. In 1969 Nicholas Rescher wrote an early article on the allocation of "exotic medical lifesaving therapy," such as dialysis and transplantation. Medical ethics began to be taught as an undergraduate philosophy course for which textbooks were produced (Gorovitz et al., 1973; Gorovitz et al., 1976). Daniel Callahan, trained in the analytic philosophy tradition at Harvard University, realized the ethical dimensions of the new medicine and in 1979 founded, with psychiatrist Willard Gaylin, the Institute of Society, Ethics, and the Life Sciences, later renamed the Hastings Center. Although slower to enter the field of practical ethics than the theologians, philosophers such as Baruch Brody, K. Danner Clauser, Tom Beauchamp, and Stephen Toulmin made significant contributions to the methods and substantive analysis of biomedical problems. Indeed, as Toulmin has claimed, "Medical ethics saved the life of philosophy," imparting an intellectual vitality and moral urgency to a field that had turned from the moral concerns of personal and social life to arid speculation.
Legal scholars were also prominent in the early years of bioethics. William Curran and Paul Freund of Harvard University and Jay Katz of Yale University contributed to the important symposium on experimentation with human subjects sponsored by the American Academy of Arts and Sciences in 1966; Katz subsequently published major work in this area (Freund; Katz, Capron, and Glass). John Noonan wrote perceptively on abortion and contraception. As the issues surrounding death and dying became prominent, particularly with the Karen Ann Quinlan case in 1975, lawyers became deeply involved, because law has always taken a serious interest in the determination of the causes of human death. Similarly, the evolution of the doctrine of informed consent has been strongly influenced by jurisprudence and judicial opinion. It is difficult to distinguish between the lawyer and the bioethicist in such figures as George Annas, John Robertson, Alexander Capron, and William Winslade. Indeed, one of these scholars, in a 1993 book, asserted, "American law, not philosophy or medicine, is primarily responsible for the agenda, development and current state of American bioethics" (Annas, p. 2).
Many physicians and scientists have become interested and adept in bioethics. As the field developed, however, the majority of its practitioners came from theology and philosophy; relatively few physicians have devoted themselves to scholarly productivity. Notable exceptions are Edmund Pellegrino, Mark Siegler, Howard Brody, Eric Cassell, and Christine Cassel. They bring to their contributions the sense and sensitivity of the practicing physician.
Although ethics was once taught in American colleges as the summit of the curriculum (often by the president of the college), as the twentieth century opened, ethics had retreated from that academic prominence to a refined and remote subspecialty of philosophy. Many believed that ethics was "caught" rather than taught. Medical ethics, it was said, was best conveyed to medical students by the example of prominent physicians, such as William Osler, as well as by the role models of the leading teachers in individual medical schools. Their lives and writings were common touchstones of discussion. Moreover, resolution of ethical issues tended to emphasize the need for the excellent overall character and reputation of the physician, that is, an ethics of virtue. This emphasis on the good intentions of the physician was congruent with the model of practice then supported by the AMA—the independent practitioner in contract with the individual patient.
Medical jurisprudence, the study of the relationship between medical practice and the law, had been taught in American medical schools with some regularity during the nineteenth century. No course on medical ethics as such is known to have been offered until the late 1920s, except in the Catholic medical schools. The curriculum of the first known course in a secular medical school, offered by Park White at Washington University School of Medicine, St. Louis, in 1924, included discussion of group practice, consultations, relations with other practitioners, quackery, eugenics, euthanasia, and birth control (Burns, 1980). In 1926 the AMA recommended that medical ethics be made part of the medical curriculum. By 1931 it was reported that 43 percent of the sixty-seven American medical schools offered a course in medical ethics, most of these courses in the required curriculum. Approximately the same level was maintained through the 1950s, although course time was stretched to cover other subjects, such as medical sociology and economics, and it is unclear what topics were covered as medical ethics. During this era, Richard Cabot, who was both professor of medicine and professor of social ethics at Harvard University, was a dominant figure. He stressed the importance of personal integrity and honesty in the physician, as had the earlier professional ethics, but he placed this within the evolving framework of scientific medicine: Integrity must be manifested in clinical competence, the primary ethical obligation of the practitioner (Burns, 1977).
As the century progressed and the social and psychological sciences spread in collegiate education, discussion of the art of character development became increasingly over-laid with psychological and psychiatric analysis of the physician's character. Indeed, in the 1940s and 1950s, the Freudian model of psychological dynamics and of the doctor–patient relationship became prominent in the analyses of the virtues of physicians (Binger). Meanwhile, the increasing midcentury confidence in the social sciences tended to displace ethics terminology with concepts of "professional development," "human engineering," and so forth, sometimes even denigrating the admonitions of traditional morality as no more than "taboos." Ethics was often seen as so colored by religion that its teaching was bound to be covert indoctrination. In the secular climate of that time, any formal acknowledgment of ethics was suspect: Even the National Endowment for the Humanities, which eventually became a strong supporter of bioethics, originally excluded ethics from the list of the humanities whose study it would fund. Thus, ethics was rarely taught in higher education and even more rarely in medical education. This hiatus in the teaching of medical ethics during the 1950s may be seen as a prelude to the bioethics movement, in which neglected ethical questions forced their way back into the consciousness of the profession and the public alike.
The first national conference on the teaching of medical ethics was held in 1972 under the sponsorship of the Institute of Society, Ethics, and the Life Sciences and the Columbia University College of Physicians and Surgeons. By this time, out of 114 medical schools, only three required an ethics course and only thirty-three offered ethics as an elective (Veatch, Gaylin, and Morgan). The Society for Health and Human Values, formed in 1969, and its attendant Institute on Human Values in Medicine, encouraged medical ethics teaching. In the decade that followed, the number of schools providing organized teaching of ethics increased, and faculty members, often philosophers and theologians, were appointed. The content of the course shifted from the traditional topics, such as truth telling, confidentiality, care of the poor, care of the dying, and relations among practitioners, to the newer problems raised by technology and the social setting of modern medical care. In 1987 ninety-five American medical schools reported that they required a course in medical ethics, and the Association of American Medical Colleges strongly urged the inclusion of ethics in the curriculum (Bickel).
Although medical students received little formal instruction in ethics, nursing schools developed a strong tradition of ethics teaching. Several major works on ethics were published by nurses at the turn of the century, notably Nursing Ethics by Isabel Hampton Robb (1901). Although her text is marked by a stern and self-sacrificing message to nurses, it includes sensitive discussion of many aspects of nurse–patient and nurse–physician relations. Textbooks on nursing ethics published in the first two decades of the century went through many editions before fading from popularity in the 1940s and 1950s. Notable among the authors were Charlotte Aikens and Thomas Verner Moore, whose books made extensive use of case studies. In 1931 religious educator Paul Limbert published a defense of nursing ethics courses: They were needed, he argued, to make ethical concerns explicit and to assist student nurses in interpreting their clinical experiences in such a way as to foster good professional character. As in the medical ethics of that era, the emphasis was on the character development of the nurse rather than on principle-centered or patient-centered ethics. An important theme for nursing ethics has always been the impact of the feelings and character—the "humanness"—of the practitioner on the care and cure of the patient. As new technologies developed with increasing efficacy, practitioners felt the need to redefine the role of their personality in relationship to those technologies.
At the beginning of the twentieth century, nursing was predominantly a home-based practice; by the end of the century, it had become predominantly institution based. This redefinition of the nursing role provided a stimulus for some of the recurring issues in the nursing literature of the early part of the century. For instance, whether a nurse should do housework, such as washing diapers or tending the fire in the grate, was a significant issue until the 1950s. How the nurse should react to the errors of quacks and regular physicians continued to be a prominent issue. In all such cases, texts resolved the questions in terms of dedication to the welfare of patients. Indeed, nursing ethics took an early stand against permitting patients to be injured by other practitioners, including physicians, and nurses have taken an increasing role in institutional quality control.
Like physicians, nurses struggled with the problem of "irregular" practitioners. In the earliest part of the century, the "untrained nurse" was represented in the nursing ethics literature as ethically, as well as technically, incompetent. The emergence of the licensed practical nurse in the 1930s and the increasing number of nursing aides during the century challenged professional nursing, and the ethics of relationships with these occupations has been delicate. In the 1970s the American Nurses' Association took a stand that a bachelor's-level education was necessary for professional nursing, calling into question the standing of nurses trained in hospitals and community colleges. In the 1980s nursing was again challenged by a recommendation from the AMA, calling for the creation of a "registered care technician" to perform some of the technical functions of nurses. The ethics of the relationship of nurse to physician is still being debated in the nursing ethics literature. It is commonly asserted that power and gender relationships are central to the ethics of nursing. Original presentations of the ethics of nursing have appeared: The works of Mila Aroskar, Martin Benjamin, Joy Curtis, Anne Davis, Marsha Fowler, Sara T. Fry, Sally Gadow, Amy Haddad, Andrew Jameton, Christine Mitchell, James Myskens, and Michael Yeo are notable. Their work carries the themes of nursing ethics into the broader stream of bioethics. The bioethics movement has also touched the many other professions involved in the care of patients: dentists, occupational therapists, pharmacists, physical therapists, physician assistants, medical technicians, and social workers.
Ethical Issues in the Emerging Biomedical Technologies
In the years after World War II, the rapid advances of biomedical science were translated into clinical interventions that could save and sustain life in ways never before possible. These technological advances brought not only the benefits of improved health and prolonged life but also a range of puzzling moral questions (Jonsen, 1998). One of the first of these technologies to raise explicit ethical concerns was the 1961 invention by Belding Scribner at the University of Washington of a technique for chronic hemodialysis of persons with end-stage renal disease. Because the first artificial kidney center in Seattle, Washington had limited machines and trained personnel, it could serve only a tiny portion of the 15,000 or so persons in need of such lifesaving care. A committee consisting of seven lay members and two physician-advisers was chosen to select patients who would be admitted. Those who were not admitted would die. The committee employed social criteria, such as productive livelihood and respectable citizenship, for selecting candidates from among the many medically eligible patients. There was a strong public reaction and much severe criticism of using social values in life-and-death decisions (Fox and Swazey, 1974).
Philosophers and theologians noticed the issue and engaged in debate over it (Rescher; Childress; Ramsey, 1970b). The issue of rationing the scarce resource of dialysis was resolved in 1972 by an amendment to the Social Security Act providing payment for about 90 percent of the high cost of dialysis. This led to further discussion comparing the plight of other persons in high-cost disease categories, such as hemophilia, with that of kidney patients. In justice, the argument ran, various other groups ought to receive similar public aid. This early example of the ethical dilemmas posed by the new technology exemplified some of the themes that would become central to bioethics: the acceptance of lay opinion into decisions formerly reserved to physicians, the appearance of philosophical and theological analyses of the issue, the recognition of questions of fairness in application of medical resources, and the profound implications of life-and-death decisions. Indeed, the questions "Who should live? Who should die? Who should decide?" became the theme of bioethics.
The first heart transplantations were done in South Africa in 1968; similar operations were attempted shortly thereafter in the United States. Optimistic claims by medical innovators fostered public enthusiasm, which turned to disillusionment when, after three years, the very poor survival rate resulted in a virtual moratorium on heart transplants (Fox and Swazey, 1974). As heart and kidney transplantation became more effective, ethical issues surrounding organ donorship arose. To encourage cadaver donorship, the Uniform Anatomical Gift Act was proposed by the U.S. National Conference of Commissioners on Uniform Laws in 1968 and subsequently adopted by all states (Katz, Capron, and Glass). Because of high costs and the scarcity of organs, transplantation forcefully raised questions of whether the gains of new technology could justify the costs. At the same time, the determination of death, traditionally done by noting the cessation of cardiorespiratory functions, began to be questioned: These criteria seemed obsolete under conditions of artificial respiratory support and did not allow for removal of organs for transplantation. A vigorous debate ensued about the ethical and legal implications of shifting to clinical criteria that would focus on cessation of brain activity. In 1968 a committee at Harvard Medical School formulated a statement defining brain death as a criterion for declaring death (Harvard Medical School). Brain death criteria were accepted and legalized slowly, beginning in Kansas in 1970. Still, considerable confusion required further refinement of the concept, leading eventually to the recommendation of a Uniform Statute for the Determination of Death, which has now been adopted in most jurisdictions (U.S. President's Commission for the Study of Ethical Problems in Medicine, 1981).
During this same period, artificial implants to assist or replace the heart were being developed. Denton Cooley in Houston, Texas, unsuccessfully attempted to implant an artificial heart in 1969. In anticipation of the time when such a device might be ready for use in humans, the National Heart and Lung Institute in 1971 established a panel to study the possible ethical, social, economic, legal, medical, and psychiatric consequences of its development. This was the first effort by the federal government to explore the ethical implications of new medical technologies (National Heart and Lung Institute; Jonsen, 1973). The first actual implantation of an artificial heart—in Barney Clark, at Salt Lake City in 1982—aroused considerable debate about the appropriateness of this device (Shaw).
By the mid-1960s, issues of research ethics had begun to ferment among scientists (Ladimer and Newman). The Nuremberg trials in 1947 revealed the horrors of the Nazi concentration camps, where cruel and lethal medical experiments had been performed on prisoners. Several articles on the ethics of human experimentation had appeared in the American medical literature, but the ethical issues of biomedical experimentation with human beings were not widely discussed, perhaps because many believed that nothing so horrible could happen in the United States (Alexander; Annas and Grodin). During World War II, however, the intense efforts to improve the capabilities of military medicine occasionally spurred researchers to design experiments in which persons were treated dangerously and without their consent. In the years after the war, biomedical research was fueled by large infusions of funds from the newly expanded National Institutes of Health, and research projects were sponsored in hospitals throughout the country. As the volume and intensity of research increased, questionable practices appeared and were tolerated as the price to be paid in the war against disease. Informed consent of research subjects was rarely obtained, and oversight by anyone other than the researcher was unusual. In 1962 a number of children were born with serious congenital defects due to their mothers' ingestion of thalidomide, an unapproved drug. This tragedy stimulated congressional hearings at which the ethics of human experimentation, then largely uncontrolled, was aired. Subsequently, amendments to the federal Food, Drug, and Cosmetic Act in 1964 required full and free consent of all subjects of drug trials.
In 1966 Henry Beecher, professor of anesthesia at Harvard University, brought problems in the ethics of experimentation to the attention of the medical community. He detailed twenty-two medical experiments carried on by respected investigators that he branded as unethical because of lack of consent or inappropriate assessment of risks in relation to benefits (Beecher; Rothman, 1991). In 1966 (with revisions in 1968) the U.S. Public Health Service formulated guidelines for protection of the rights and welfare of human subjects in all federally supported research. In 1971 these guidelines became regulations of the Department of Health, Education, and Welfare, requiring research institutions to set up medical and lay panels to review all federally funded experimentation to ensure that subjects are informed and freely consent to the research procedure, and to determine that the scientific benefits justify the risks of the research (Levine).
A number of scandals in research ethics brought public attention to the need for regulation. At Willowbrook State Hospital in New York, a series of studies on hepatitis were conducted from 1965 to 1971 that involved infecting mentally retarded children with hepatitis virus. At the Jewish Chronic Disease Hospital in Brooklyn in 1963, live cancer cells were injected into senile patients without their knowledge or consent. In 1971 a study begun in the 1930s at Tuskegee, Alabama, came to public attention: A number of rural black men suffering from syphilis had been left untreated in order to ascertain the "natural history" of the untreated disease (Jones). In response to these and several other scandals, the U.S. Congress established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1974–1977) to make recommendations for federal policy on the broad problems of human subjects in research as well as the special problems posed by research with fetuses, children, prisoners, and other dependent or vulnerable persons. These recommendations were codified in federal regulations and are now widely enforced in research institutions. The field of bioethics was significantly advanced by the work of this commission. Several scholars in ethics sat on the commission, and many philosophers, theologians, lawyers, and sociologists were asked to contribute to its deliberations, thereby stimulating thought about the issues and making public careful analyses of the problems and principles. The commission's Belmont Report (1978), stating the principles of research with human subjects, first enunciated the triad of bioethical principles: autonomy, beneficence, and justice. Federal regulations codified the commission's recommendations, and for the next several decades clinical research, scrutinized for ethical probity by institutional review boards, proceeded without incident. In the late 1990s, however, several deaths and widespread evidence of inadequate review of research led to a revival of concern. The ethics of research returned to the agenda of bioethics.
It became increasingly common during the twentieth century for people to die in a hospital, often under conditions of dehumanizing technology. This reawakened age-old discussions of death, dying, and euthanasia, now in light of the new technical potential of modern medicine. Although there had been several unsuccessful attempts to make euthanasia legal in the early years of the century, death and dying had become a taboo subject in medicine. Elisabeth Kübler-Ross's sensitive interviews with dying patients, captured in her 1969 book, On Death and Dying, did much to awaken interest in the psychology of dying.
In 1976 the state of California passed novel legislation about termination of life support. The Natural Death Act authorized patients to sign a legal document directing physicians to remove or to withhold life-support devices under carefully defined circumstances. Many states have followed California by enacting legal forms of "advance directives" to guide physicians in following the wishes of their dying, incompetent patients. In 1976 a New Jersey Supreme Court decision allowed the parents of Karen Ann Quinlan—a young woman not quite dead by the Harvard brain death criteria, but who could be maintained indefinitely on a respirator with no hope of recovery—to have their daughter removed from the respirator (In the Matter of Karen Ann Quinlan, 1976). Subsequent judicial decisions in many states and one U.S. Supreme Court decision—Cruzanv. Director, Missouri Department of Health (1990)—have elucidated the conditions under which life support might be forgone. Many of these decisions have been influenced by the bioethical debates over active and passive euthanasia. In the 1990s, the debate over legalization of active euthanasia was renewed, spurred by the public perpetration of euthanasia by the physician Jack Kervorkian and by the advocacy of the Hemlock Society, which promoted legislation that would authorize physicians to provide "aid in dying" at the request of terminal patients. In the 1990s several states held initiatives to legalize this practice but only in the state of Oregon did the voters approve. Since 1994 citizens of that state have been permitted to seek, under stringent conditions, the aid of a physician to end their life. This and other efforts to make euthanasia legal have prompted important judicial decisions, even in the U.S. Supreme Court (Vacco v. Quill, 1997; Washington v. Glucksberg, 1997; Hillyard and Dombrink). These questions about the nature of appropriate care for the terminally ill, as well as many other ethical questions, are made more urgent by the increase in the numbers of elderly people in the United States: Since the beginning of the twentieth century, the number of Americans over the age of sixty-five has tripled in proportion to the general population (Jecker).
In 1978 the U.S. Congress reestablished the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research as the U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Among the new commission's mandates were studies of brain death, genetic screening, access to healthcare, and the use of life-sustaining technologies (U.S. President's Commission, 1981, 1983a, 1983b, 1983c). Like its predecessor, it called on scholars from many disciplines to contribute to its deliberations. Its reports make up a veritable canon of bioethics. Its recommendations on the definition of death have been enacted into law in all states as the Uniform Definition of Death Act.
The ascendancy of technological medicine inspired critical study of the nature of the healthcare professions and institutions. Popular and academic works investigated the conceptions of health employed in medicine and the efficacy of medical services offered (Illich). They explored the nature and authority of the health professions and raised questions about ethical responsibilities of health professionals whose attitudes are shaped by economic and social forces (Freidson). The proper role of health professionals has been questioned in many contexts, including the right of health professionals to strike and the extent to which they bear responsibility for patients' lives, for behavioral factors affecting health, and for social and political factors causing disease. The helplessness of individuals in the face of a massive medical establishment led to a patients' rights movement. As evidence of this concern, the American Hospital Association published A Patient's Bill of Rights in 1973, with the suggestion that it be adopted by all hospitals. Attempts to pass federal legislation in support of a Patient's Bill of Rights have been unsuccessful.
Reproduction and reproductive technology also fostered debate. During the first part of the century, birth control was an important issue in the feminist movement. Not until the late 1960s were restrictions on the use and teaching of birth control removed in most states. The feminist movement, especially through Margaret Sanger (1879–1966), also sponsored and encouraged research on new birth-control methods (Gordon). In the 1960s abortion became a center of debate. The discussion began with the American Law Institute's model statute permitting abortion for medical and psychological conditions as well as after rape and for fetal defect. The "responsibility for pregnancy" issue for the most part dropped from the debate as it became an issue of women's right to control their bodies, on one side, and the claim of the fetus's right to life, on the other, a claim largely, although not exclusively, urged by Catholics. The U.S. Supreme Court in Roe v. Wade (1973) chose a position protecting the mother's decision in the first trimester of the pregnancy, with increasing possibility for legal restrictions during the second and third trimesters. Abortion, because of its intriguing questions about personhood, stimulated considerable professional, philosophical, and theological reflection (Callahan, 1970; Grisez). That reflection has, in the 1990s and early 2000s, ceded to vigorous, even violent political activism. Whether the reflection or the activism will prevail in policy remains to be seen.
In the 1960s advances in genetics and reproductive technology caused much speculation about social consequences of such possible innovations as cloning, in vitro fertilization, and extrauterine gestation. The concern over cloning human beings, vigorously debated in the 1960s, when the question was still speculative, resumed in 1996, after the successful cloning of the sheep Dolly by two Scottish researchers (Ramsey, 1970a; MacKinnon). Interest in the potential and the dangers of genetic manipulation was heightened by the development of recombinant DNA technology in the mid-1970s. Amniocentesis (a test to diagnose certain fetal disorders during early pregnancy) and improvements in genetic history-taking made possible the development of genetic counseling as a profession in the late 1960s, with attendant ethical questions (Hilton et al.). Many questions considered speculative in the 1980s came close to realization by the early twenty-first century. The federally sponsored project to map the entire human genome has become a focus for the study of the ethical questions involved in genetic diagnosis, treatment, and social policy. Its Ethics, Legal, and Social Implications Project has sponsored a wide variety of scholarly and institutional activities in the ethics of genetics (Juengst and Watson; Cooke-Deegan).
Questions about the biological basis of personality, achievement, and social behavior continued to arise. In the early part of the twentieth century the eugenics movement fostered many state laws requiring or allowing sterilization of persons with mental retardation or illness. Debate over sterilization arose again around 1970, when protection of women and minority groups against pressure for sterilization became an issue. The role of genetics in behavior continued to be debated with the development of sociobiology and studies on IQ and heredity. There was disagreement over the goals of genetic counseling, as well as over whether genetic factors in behavior could or should be identified. Screening of populations for genetically determined conditions was much debated (U.S. President's Commission, 1983c; Holtzman).
Biology and behavior was also an issue in the treatment of mental disorders by surgical methods. Prefrontal lobotomy was widely used but much debated after its introduction in 1935. With improvements in surgical techniques in the 1960s, new types of brain surgery were attempted for treatment of violence and other indications. The use of psychosurgery on prisoners became a public issue (Valenstein). The National Commission for the Protection of Human Subjects issued a report on this practice that recommended only its strictly controlled experimental application. A related but quite different form of brain surgery involves the implantation of tissue from aborted fetuses into those suffering from certain neurological and endocrine disorders. This practice, initiated in the late 1980s, aroused great debate. Several advisory committees convened by the National Institutes of Health approved this form of research as acceptable public policy, yet the federal government refused for almost six years to fund studies (Vawter et al.). Although this precise form of therapy has yet to be proven efficacious, scientific interest in the therapeutic value of embryonic stem cells stirred up an ethical storm. On August 9, 2001, President George W. Bush told the nation that "Embryonic stem cell research is at the leading edge of a series of moral hazards." He announced that he would appoint a council to monitor stem cell research and investigate other bioethical questions. The President's Council on Bioethics was established on January 16, 2002, headed by a distinguished bioethicist, Dr. Leon Kass (U.S. President's Council, 2002; Green).
Although psychosurgery is the most physically invasive mode of treatment for behavioral problems, all levels of psychiatric treatment were subject to ethical inquiry. The warrant and nature of involuntary commitment to mental hospitals had been a source of contention for many years (Rothman, 1980). Commitment laws in many U.S. states were modified in the 1960s to increase protection of individuals from arbitrary commitment, although at the same time, the policy of deinstitutionalization thrust many mental patients into a world for which they were unprepared. The right of hospitalized mental patients to receive treatment was established in the United States initially by the Supreme Court decision in Wyatt v. Stickney (1972). The use of drugs in treating psychiatric disorders became an issue after chlorpromazine and related major tranquilizers became widely available in the 1950s, reducing the need for hospitalization. The conventional medical view of behavioral problems as disease came under attack from radical psychiatrists such as Thomas Szasz (1961). Goals and values in psychotherapy came to the fore in discussions about treating patients who manifested "antisocial" behavior. The growth of behaviorism and behavior modification seemed also to challenge traditional libertarian values. Rapid evolution of the neurosciences has resuscitated ancient ethical questions about free will and responsibility and raised new ones about the limits of enhancement of cognitive and affective life. Scholars in bioethics are only beginning to study these questions.
In 1981 a previously unknown disorder of the immune system appeared, at first in men known to engage in homosexual activities. This disorder, named acquired immunodeficiency syndrome (AIDS), was quickly traced to a blood-borne retroviral infection. The resulting disease was relatively slow to appear but was, given the therapeutic possibilities available, inevitably fatal. It spread in epidemic fashion among gay men and among those who shared needles while taking drugs intravenously. Fear of the disease and widespread homophobia led to discriminatory actions against those infected. Old ethical questions about restricting freedom of persons suspected of having a communicable disease were revived. Public health needs appeared to conflict with personal rights. The duty of healthcare professionals to treat infected persons was vigorously debated, as was the right of infected care providers to practice. Bioethics, by now adept at the discussion of practical ethics, made a major contribution to these debates (Bayer).
The problem of just allocation of healthcare had been noticed in the earliest days of bioethics. At that time, however, it was largely defined in terms of selection of patients for rare and expensive technologies, such as dialysis. In the early 1980s, it was recognized that some 35 million Americans were not covered by any healthcare insurance (U.S. President's Commission, 1983b; Dougherty; Churchill). Ethical questions about the justice of such a system were raised as health-policy experts began to note the rapid inflation in healthcare costs. Lack of access to care competed with cost containment in public debate and political maneuvering. These problems became central to the concerns of many bioethicists, who began to produce acute analyses of the issues of justice in the healthcare system and its financial base. These ethicists raised and examined the politically unpalatable issue of rationing of healthcare resources (Daniels; Callahan, 1988; Menzel; Morreim).
As the 1970s opened, a number of scholars were beginning to attempt to analyze the issues discussed above within the perspectives and methodologies of the two disciplines traditionally concerned with ethics, philosophy and theology. As these scholars began to publish and communicate, a distinct field of study called bioethics came into being. The word bioethics was first applied to the ethics of population and environment (Potter), and soon became the rubric for a diverse collection of considerations about the ethical issues inherent in healthcare and the biological sciences (Callahan, 1973). The term, although considered unsatisfactory even by some of those who employed it, was canonized by the inauguration of the Encyclopedia of Bioethics project in 1972 and by the publication of the first edition, edited by Warren T. Reich, in 1978. The scholars in this new field now come from many disciplines, such as theology, philosophy, social sciences, and law. Bioethics concentrates on a specific set of issues, such as those mentioned above, and employs a range of analytic methodologies, explained in texts such as Principles of Biomedical Ethics (Beauchamp and Childress) for the more theoretical questions and in Clinical Ethics (Jonsen, Siegler, and Winslade) for the more practical questions. It has professors, students, texts, journals, learned societies, and research centers. At the beginning of the twenty-first century, more than a dozen graduate programs offer higher degrees to students trained in the topics and methods of the field.
Bioethicists show considerable interest in the theoretical definition of the field and its methodologies. Albert Jonsen and André Hellegers published an essay in the early days of the field's existence in which they saw it as a mélange of traditional professional ethics, philosophical ethics, and theological ethics (Jonsen and Hellegers). Robert Veatch, however, was the first to attempt a full exposition of the theoretical underpinnings of bioethics. His 1981 book, A Theory of Medical Ethics, set the field firmly on the ethical considerations relative to autonomy of the patient. H. Tristram Engelhardt Jr. followed in 1986 with The Foundations of Bioethics, an even more strongly stated thesis about autonomy as the basis of the discipline. Nevertheless, some have asserted that bioethics, while it had its origins in the strong affirmation of autonomy for patients, may have moved too far in this direction and thereby neglected other aspects of healthcare, such as benevolence, community, and social justice (Pellegrino; Daniels).
The study of bioethics, together with other fields in applied ethics, has inspired much debate about the methods appropriate to studying practical ethics in general. Many of these nascent methods have lent a richer, more detailed texture to ethical discussion than is permitted by principle-and theory-based ethics. The long-abandoned casuistry that employs rhetorical and analogical reasoning to examine cases is now being viewed with renewed and critical interest (Jonsen and Toulmin; Arras; Sugarman and Sulmasy). Mathematical decision analysis has been used to study values through systematically related cases (Smith and Wigton). Stories, real and fictional, are used as texts open to moral interpretation according to the methods of hermeneutics (Brody; Hunter), and phenomenology seeks to capture the ethical subtleties of clinical encounters (Zaner; Carson). Echoing the language of ethics from the nineteenth century, but with much greater attention to depth and detail, interest in virtue-and character-based ethics is vigorous (Drane; Shelp).
Although the early development of bioethics was dominated by male scholars, women such as Elizabeth Fee, Renée Fox, Loretta Kopelman, Karen Lebacqz, Ruth Macklin, Ruth Purtilo, and Judith Swazey have made significant contributions to theoretical and practical bioethics, and feminist ethics has begun to attract much attention. Feminist bioethics offers social criticism of the treatment of women as patients and physicians, discusses the interrelationship between gender and power, provides fresh analyses of issues of traditional concern to women (such as pregnancy, birth, and reproductive choices), and emphasizes important theoretical concepts—such as caring, community, and responsibility—neglected by male scholars (Holmes and Purdy; Sherwin).
Other authors note the ethnocentricity of U.S. bioethics; it has been charged with a failure to reflect the concerns of people of color, and new work is beginning to appear that increasingly reflects diverse viewpoints. Collections of narratives of the African-American experience with disease and healthcare have begun to appear (Secundy and Nixon; White). A Center for Bioethics was inaugurated at Tuskegee University at the time of President Bill Clinton's formal apology to African Americans for the Tuskegee syphilis experiments; this center will concentrate on ethnic issues in bioethics. Some authors have discussed the tensions between expressed philosophical ideals and systematic patterns of discrimination, such as abuses of birth control, sterilization, and selection of subjects for research (Dula; Flack and Pellegrino). U.S. bioethics is becoming more international and less ethnocentric in its concerns: American bioethicists visit many nations, and bioethicists from around the world spend time in American programs, stimulating cross-cultural comparisons and analyses (Fox and Swazey, 1984; Harding; Sagoff). American scholars are active in the International Association for Bioethics.
The tendency of ethics researchers to study clinical questions cooperatively with clinicians has inspired empirical study of ethics in healthcare. This in turn has fostered cooperation between the social sciences and normative philosophical ethics. Termed the contextual approach by some authors, it has begun to call attention to significant social and cultural features of life that affect ethical expression and debate (Weisz; Thomasma). Some researchers have used in-depth ethnographic techniques, such as participant observation and interviews, to study the microcontext of clinical settings; others are employing epidemiological methods to ascertain frequency of behaviors, such as resuscitation. The empirical social sciences and philosophy are beginning to converse with each other on the common ground of bioethics (Guellemin and Holmstrom; Bosk).
In the 1970s, as faculty members were appointed to teach ethics in medical schools, it became common for the ethicist to accompany physicians on teaching rounds. This led to the participation of ethicists in consultations about cases that presented particularly difficult ethical decisions. This practice came to be called clinical ethics. In 1977 ethicist John Fletcher was appointed assistant for bioethics to the director, Clinical Center, National Institutes of Heath, with responsibility for ethics consultation. Because philosophy itself provides little guidance about how to assist in actual decision making, various methods were devised to apply principles to practice. Clinical ethics spread from university hospitals to community hospitals; many individuals, physicians and philosophers alike, now act as clinical ethics consultants. The Journal of Clinical Ethics was initiated in 1991. As might be expected, some dispute surrounds the idea and practice of ethics consultation, because it seems to imply that some persons are "ethical experts," a notion rather foreign to a morally pluralistic culture (Fletcher, Quist, and Jonsen). The American Society for Bioethics and the Humanities published criteria for clinical-ethics consultation.
As the field of bioethics was beginning to form and as yet lacked institutional support for regular teaching and discussion, conferences and symposia were an important source for developing literature, teaching, and publicity. Some of the more important early conferences were the Joseph P. Kennedy, Jr., Foundation's International Conference on Abortion, held in 1967 in Washington, D.C.; a New York Academy of Sciences' conference, New Dimensions in Legal and Ethical Concepts for Human Research (Ladimer and Newman); a U.S. National Academy of Sciences Institute of Medicine's conference, Health Care and Changing Values, held in 1973; a series of transdisciplinary symposia on philosophy and medicine, the first of which was held in Galveston, Texas, in 1974 (Engelhardt and Spicker); and the 1975 conference Experiments and Research with Humans: Values in Conflict, sponsored by the National Academy of Sciences. In the 1990s such conferences, on a wide variety of topics, were announced at a dizzying pace.
Several privately funded institutes are devoted primarily to the study of bioethics. The Institute of Religion, established in 1954 at the Texas Medical Center, Houston, began to devote attention to bioethical issues in the late 1960s. The Society for Health and Human Values evolved in 1969 from a smaller interdisciplinary group that had formed the Committee on Health and Human Values in 1963 with support from the ecumenical United Ministries in Higher Education. In 1998 the Society for Health and Human Values, the Society for Bioethics Consultation, and the American Association for Bioethics united to form the American Society for Bioethics and the Humanities, which by 2002 had enrolled 1,500 members, drawn from bioethics, medicine, nursing law, religion, and the social sciences. The Hastings Center, originally called the Institute of Society, Ethics, and the Life Sciences and founded in 1969 by Daniel Callahan and Willard Gaylin, investigates social, legal, and ethical aspects of the health sciences. It conducts a program for visiting fellows and associates; publishes the most widely read of the ethics journals, Hastings Center Report and IRB: A Review of Human Subjects Research; organizes study groups on special topics; and conducts courses for health professionals and others. In 2002 the Hastings Center had 109 fellows and almost 12,000 members.
For several years in the 1970s, the Joseph P. Kennedy, Jr., Foundation funded the Interfaculty Program in Medical Ethics, which joined Harvard University's Medical School, School of Public Health, and Divinity School to train scholars in this new field. In 1971 André Hellegers founded the Joseph and Rose Kennedy Institute for the Study of Human Reproduction and Bioethics, now known as the Kennedy Institute of Ethics, at Georgetown University. This program, initially financed by the Kennedy Foundation, has supported research by permanent and visiting scholars, courses and workshops in bioethics, and cooperative and consulting programs with private and governmental institutions. The Kennedy Institute has specialized in the creation of fundamental research tools in the field of bioethics. Starting in 1972, the institute sponsored Warren Reich's project for the preparation of the Encyclopedia of Bioethics, a landmark in U.S. bioethical studies. Its National Resource Center prepares the computer-based bibliography of bioethical literature called Bioethicsline, a part of the National Library of Medicine's Medlars network; Bioethicsline is also published in book form as Bibliography of Bioethics (Walters). The Kennedy Institute originated the important Journal of Philosophy and Medicine, which is now published independently, and currently produces the Kennedy Institute of Ethics Journal. In 1993 the American Association of Bioethics came into existence to promote the exchange of ideas among bioethics scholars, encourage the development of new scholars, and maintain contact with international societies in bioethics.
As bioethics flowered, many ethical issues were being debated as matters of public policy. Some bioethicists found themselves working as public employees to aid in policy formation, and others served as members of and consultants to advisory bodies such as the National Commission for the Protection of Human Subjects, the U.S. President's Commission for the Study of Ethical Problems in Medicine, the now defunct Ethics Advisory Board of the Department of Health and Human Services, and state bodies such as New York's Task Force on Life and the Law and New Jersey's Bioethics Commission. Ten of the eighty-two "special government employees" working with the 1993 Task Force on Reform of Health Care were persons identifiable as bioethicists. The National Bioethics Advisory Commission was established by an executive order of President Clinton in 1995, and during the next six years this commission produced a series of excellent reports on such issues as cloning of human beings, stem cell research, and research involving persons who have mental disabilities. Beyond these official bodies, several thousand physicians, nurses, clergy, and laypersons sit, often with bioethicists, on the hospital ethics committees that have, since the 1980s, become part of most medical centers in the United States. Grassroots bioethics activities, such as the Oregon Health Decisions Project, strive to involve laypersons in making decisions about the ethics of healthcare allocation policy. Bioethics has become, to some extent, a philosophy for the people.
The bioethics movement has demonstrated extraordinary vitality in the United States since the 1970s. Its work effected significant changes in the practices of healthcare. Its first historian, David Rothman, wrote, "The record since 1966, I believe, makes a convincing case for a fundamental transformation in the substance as well as the style of medical decision making" (Rothman, 1991, p. 251). That transformation consists largely in the flow of lay opinion and judgment into the formerly closed world of medical decision and policy, in both clinical and research settings.
By the 1990s, bioethics was firmly established as a field of study within academic settings. This gives it a prestige and institutional base that it had previously lacked, but that may also imperil its vitality and independence. Although initially seen by some as a fad, bioethics is linked with social and personal issues deeply rooted in the culture of the United States during the twentieth century. The impact of technology on human life, the distribution of increasingly scarce health resources in an otherwise affluent society, the role of government in the pursuit of health by individuals and populations, and the voice of the consumer-patient in decisions about medical care—all these issues are central to the concerns of bioethics. Inevitably, ethical issues in the life sciences also embrace the larger social problems of environment and population. It is likely that the diffuse field of bioethics will take shape as it increasingly finds its place in the education of future health professionals, as it becomes part of the attempt by schools and consumer organizations to increase personal responsibility for health and environment, and as it attends to the formulation of public policy about social life in the biosphere.
albert r. jonsen
andrew jameton (1995)
revised by authors
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