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Systematic Approaches To Bioethics

ACADEMIC BIOETHICS

Definitions

During the 1970s, scholars from several disciplines, principally moral philosophy, theological ethics, medicine, and law, began to study and write about the ethical issues of modern medical science and health care. Gradually, a discipline called bioethics began to emerge, with specialized faculty (usually located in schools of medicine), courses, conferences, and journals. What contribution can academic bioethics make toward public moral discourse about the biomedical sciences and health care practices and policies?

Academic bioethics is easier to describe than to define. Descriptively, the term refers to the scholarly activities of individuals, usually trained in an academic discipline that deals with ethics, such as theology, moral philosophy, or law, and usually working within institutions dedicated to teaching and research. These persons study a range of issues loosely arranged around the biomedical sciences and health care, apply the methods of their disciplines, and publish their conclusions in scholarly and semi scholarly journals. In the 1980s, graduate programs in bioethics appeared; there are now about a dozen such programs offering higher degrees. Academic bioethicists, then, have scholarly and practical training that enables them to work in various settings: as faculty in medical and nursing schools or university departments, as hospital or organizational consultants, as gov-



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Society's Choices: Social and Ethical Decision Making in Biomedicine 3 Systematic Approaches To Bioethics ACADEMIC BIOETHICS Definitions During the 1970s, scholars from several disciplines, principally moral philosophy, theological ethics, medicine, and law, began to study and write about the ethical issues of modern medical science and health care. Gradually, a discipline called bioethics began to emerge, with specialized faculty (usually located in schools of medicine), courses, conferences, and journals. What contribution can academic bioethics make toward public moral discourse about the biomedical sciences and health care practices and policies? Academic bioethics is easier to describe than to define. Descriptively, the term refers to the scholarly activities of individuals, usually trained in an academic discipline that deals with ethics, such as theology, moral philosophy, or law, and usually working within institutions dedicated to teaching and research. These persons study a range of issues loosely arranged around the biomedical sciences and health care, apply the methods of their disciplines, and publish their conclusions in scholarly and semi scholarly journals. In the 1980s, graduate programs in bioethics appeared; there are now about a dozen such programs offering higher degrees. Academic bioethicists, then, have scholarly and practical training that enables them to work in various settings: as faculty in medical and nursing schools or university departments, as hospital or organizational consultants, as gov-

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Society's Choices: Social and Ethical Decision Making in Biomedicine ernment employees in policy or regulatory positions, and as members of public committees and commissions dealing with ethical issues. Academic bioethics should be distinguished from what might be called professional bioethics, whose practitioners (such as physicians, nurses, and scientists) undertake to learn about the ethical standards and issues in their professional practices. They may utilize the work of academic bioethics and invite scholars to join their discussions as consultants, but their engagement tends to reflect the exigencies of their work more strongly than the theoretical and analytic features of academic bioethics. This is practical bioethics in the most commendable sense: individuals become competent-sometimes quite competent-in a subject, but work at it primarily as an adjunct to their primary occupation. Academic bioethics can also be distinguished from popular bioethics, popular moral discourse that concentrates on issues in medicine, health care, and the biomedical sciences. Thus, public debate over genetic engineering or assisted suicide, carried out in many different forums and manifested in the media, constitutes popular bioethics. In this format, it is the story rather than the analysis that prevails. Participants in this ''amateur" bioethics may become interested enough to learn something about ethical analysis, but do so casually and often without rigorous scholarship or argument. Sometimes, popular bioethics may be drafted into the service of strongly held ideologies and become quite sophisticated, although no longer impartial. If public moral discourse is taken in the strictest sense, as the deliberately organized effort to marshall evidence and considered opinion with the purpose of formulating a broadly acceptable analysis or policy about an issue, then there must be an attempt to integrate these three sources, using each according to its appropriate contribution to the debate. What then is the proportionate contribution of academic bioethics, in relation to professional and popular bioethics, and indeed in relation to other forms of discourse in a democratic society, such as legal, economic, political, and religious? The primary task of any public body charged with providing a forum for public moral discourse is to orchestrate these various perspectives. Origins Academic bioethics came into being when persons other than physicians started to scrutinize the moral dimensions of the practices of medicine. There is a long history of physicians doing so, but only rarely did nonphysicians comment in a scholarly manner on the work of physicians. If a date is to be found for the earliest suggestion of an academic bioethics, it might be 1927. In that year, Chauncey Leake, a distinguished pharmacologist, but not a physician, published the first modern edition of Thomas

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Society's Choices: Social and Ethical Decision Making in Biomedicine Percival's Medical Ethics, which originally appeared in England in 1803 and served as the model for the American Medical Association's Code of Ethics in 1847. In the preface, he noted that Percival, while using the term "ethics," had in effect written a book on medical "etiquette," describing the ways in which physicians dealt with each other and their patients. Leake suggested that a proper "ethics" would employ methods of moral philosophy, and he called on philosophers to examine modern medicine from the viewpoints of pragmatism, utilitarianism, and other ethical theories. Leake's call was not heeded until 1953, when Joseph Fletcher, professor of moral theology at Episcopal School of Theology in Cambridge, produced Morals and Medicine, the first serious effort by a nonphysician academic to examine certain medical mores, such as euthanasia, truth-telling, abortion, and contraception. Fletcher, though a theologian, utilized the philosophical approaches of pragmatism and utilitarianism. Several years earlier, Williard Sperry, dean of the Harvard Divinity School, had published his reflections on similar questions, but without a discernible methodology or philosophical foundation. In the mid-1960s, various academicians noted that the discoveries of modern medical science posed interesting moral problems. European theologians such as Karl Rahner and Helmut Thielicke ruminated about creative forces being put into the hands of fallible humans, either extolling their possibilities or warning about their misuse. In the United States, the ologians James Gustafson and Leroy Augenstein and philosophers Hans Jonas and Martin Golding published reflective commentaries on similar themes. These, however, were occasional essays, raising questions and testing approaches, rather than subjecting the world of biomedical science and practice to focused moral analysis. In response to the proliferation of ethical issues arising from developments in biomedicine, two centers for research were created almost simultaneously, the Institute for Society, Ethics, and the Life Sciences (now known as the Hastings Center) in 1969 and the Joseph and Rose Kennedy Center for Bioethics in 1970. These two centers can be seen as the principal source and stimulus for academic bioethics in the United States and they have, in the past two decades, been replicated in many forms and many places. In the late 1960s and early 1970s, U.S. medical schools began to appoint faculty in medical ethics. These persons, surprisingly, were not physicians but philosophers and theologians. Gradually, these faculty positions generated scholarly work that, more often than not, was published in medical journals rather than in publications devoted to philosophy and theology. This required a change in style, moving away from the vocabulary and idioms common to those scholarly disciplines toward language and arguments used by health professionals.

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Society's Choices: Social and Ethical Decision Making in Biomedicine The most important stimulus to the development of academic bioethics was the establishment by Congress of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. Because of the nature of its mandate, the National Commission was required to carry on moral discourse in a way that satisfied the criteria for formal ethics, met the exigencies of public policy and law, and responded to popular concern about the abuse of research subjects. Two of its eleven members were trained in theological ethics and a reputable philosopher was immediately hired as a consultant. During its four years of existence, the Commission asked a great number of philosophers and theologians to contribute essays on specific topics, and the preparation of its statement of the ethical principles that should govern research with human subjects was carried out with the advice of many scholars. The commission's work enlisted into the emerging field of bioethics many scholars who otherwise would have remained in the more speculative world of academic philosophy and theology. The subsequent President's Commission continued this endeavor. Contributions What did the early bioethicists, immigrants from other scholarly disciplines, contribute to the formation of this new field? Moral philosophy in the United States had been attracted, since World War II, to the methods of analytic and linguistic philosophy cultivated in British universities. This style emphasized the logic of moral discourse, attending to definition of terms and rigor of argument, and almost entirely ignored substantive moral questions. A new subtopic of moral philosophy called metaethics became the center of attention: it asked not what actions are right and good, but what do "right" and "good" mean. The philosophers who did reflect on substantive moral problems did so in a remote manner, devoting their attention to the construction and defense of theories that could provide a moral foundation for particular moral claims. Thus, anyone trained in philosophy during the years after World War II was likely to have acquired skills in the analysis of moral language and the ability to defend or criticize utilitarian theory and its alternatives. R.M. Hare, one of the most prominent moral philosophers of the era, was asked to speak to the topic: Can the moral philosopher help in doing philosophical medical ethics? He responded: The main-perhaps the only-contribution of the philosopher to solution of these problems is the clarification of the logical properties of tricky words like wrong, and the establishment of canons of valid argument. It is my belief that once issues are thoroughly clarified in this way, the problems will not seem so perplexing . . . and, the philosophical

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Society's Choices: Social and Ethical Decision Making in Biomedicine difficulties having been removed, we can get on with discussing the practical difficulties, which are likely to remain serious. (Hare, 1977) Professor Hare's comment implies that those adept at clarifying "philosophical difficulties," which are mainly linguistic confusions, must bow out of the discussion when the serious "practical difficulties" are addressed. Or, at best, they enter this discussion with no more competence than any other person. This view leaves little place for academic bioethics in public moral discourse. At that time, the few philosophers interested in normative ethics were concerned to find ways in which moral views and arguments could be defended as objective, that is, based on some grounds other than the subjective personal attitudes and emotions of those expressing the views. For example, one among many such efforts was R. Firth's theory called the "Ideal Observer," in which he proposed that the judgment "x is right" means "any person who is fully informed, impartial, and in a calm frame of mind would approve of x.'' This theory, and others like it, set a tone for the work of moral philosophers that gave them a larger place in public moral discourse than did Hare's clarification of tricky words. The Ideal Observer theory and its counterparts in the moral philosophy of that era defined the quality of mind and attitude that a moral philosopher should bring to public moral discourse. This is not to claim that all moral philosophers employed Firth's Ideal Observer theory, or its variants, in the solution of moral problems. Rather, the theory implies that if public moral discourse is composed of popular moral concern and professional moral pronouncements, as suggested above, then the moral philosopher should approach the problem with an attitude that can correct the defects of both of these contributions. As noted in Chapter 1, the ideal of impartiality counters the pursuit of self interest as well as the militancy of advocacy and contributes to the revelation of common interests and understandings. Popular moral concern is often not fully informed and is often not calm: it is the emotional response to what some perceive as a violation of rights. Professional moral pronouncements are likewise not necessarily impartial, since the professional group will advocate, often covertly and even unintentionally, for its own interests. Full information, impartiality, and a calm frame of mind must constantly be brought to bear on the discussion of contentious issues in public moral discourse. The experience of the National Commission, in which ethical analysis had to maneuver between public moral outrage over abuses and the values of scientific progress, provides a vivid example. In addition, moral philosophy attends to one particular feature of moral discourse that is often neglected in popular and professional discussions, namely, the justification of ethical claims. Again, normative moral philosophy had provided the theories that provided ultimate justification, but at the same time it emphasized certain general features of justification

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Society's Choices: Social and Ethical Decision Making in Biomedicine that should be present, regardless of the preferred theory, namely consistency and generality. A good moral philosopher will be sensitive to inconsistency between positions or to the limited applicability of principles. These are significant virtues in public moral discourse, which is often highly particularist. The moral philosophers of the 1960s were pulled out of their concern with the speculative questions of moral judgment into the world of practical concern over the rights and wrongs of such burning questions as civil rights and the justification of the war in Southeast Asia. Many serious moral philosophers initiated courses dealing directly with these questions, and a journal, Philosophy and Public Affairs, was founded to pursue these questions at the most rigorous intellectual level. Just as the questions of bioethics were emerging, moral philosophers were discovering the world of practical moral problems. The moral philosophers who initiated bioethics brought to this new field certain virtues of intellect and attitude that improved the quality of discourse. They less commonly brought substantive moral positions. The moral theologians, on the other hand, often did speak from such substantive positions formulated within the ecclesiastical traditions from which they came. Many moral theologians, especially those from the Roman Catholic tradition, also utilized philosophical theory and method in their analysis of moral problems. Many others, however, were more skeptical of philosophy and relied on scriptural themes that they felt could be applied to contemporary problems. Thus, the theological concept of covenant was used to justify and refine the medical and research doctrine of informed consent. In addition, moral theology in that era had something of a prophetic mood: it was compelled to offer radical criticism of common life and accepted norms. Hence, the advances of biomedical science were to be viewed critically rather than accepted enthusiastically. Were these startling advances manifestations of God's creative power or examples of human hubris? Theologians who took this tone provided a cutting edge to public moral discourse. Among the many theologians who discussed the issues, Paul Ramsey of Princeton University became the most prominent. Taking a stand firmly situated on biblical ethics of covenant and the faithfulness of God toward humankind, he trenchantly analyzed the new issues of the day-death by brain criteria, transplantation, research with human subjects-in ways that exposed their moral ambiguity and their threats to human dignity and freedom. His book, Patient as Person (1970), was a monumental contribution to the ethical analysis of biomedicine and, while written from a theological viewpoint, has been influential on all subsequent work in the field. Neither philosophers nor theologians have been particularly successful at one feature of public moral discourse. Whenever ethical discussion

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Society's Choices: Social and Ethical Decision Making in Biomedicine rises to the level of public moral discourse, a variety of facts surround the topic under discussion. As philosopher Dan W. Brock (this volume) writes, "the consideration of economic costs, political feasibility, legal constraints, potentials for abuse, and so forth, all bear on and must be considered as part of the ethical case for a particular policy." Even though bioethics is remarkable for the concreteness with which it discusses its subjects, it remains unclear how these factual features "must be considered as part of the ethical case." In the experience of the President's Commission, philosophical arguments about the claims of individual research subjects that supported their compensation were countered by considerations of cost and feasibility. It was never made clear how all these facts fitted into a coherent philosophical argument (President's Commission, 1982). Currently, bioethics scholars are debating vigorously the relationship between principles and facts, a debate that is essential to the role of academic bioethics in public moral discourse. Academic bioethics today has moved far beyond its beginnings. A number of academic programs prepare students for the field. These programs present students with a canon of topics and a variety of analytic methodologies. As the field grows, it incorporates the current trends in philosophy and theology. Feminist philosophy in particular is making its mark on bioethics and cross-cultural studies exert strong influence on younger scholars. Philosophers trained in these emerging approaches may be quite different from those in the earlier era: they may come with more substantive views, as did the earlier theologians, rather than with the Ideal Observer stance of moral philosophers trained after World War II. They will most likely be more sensitive to the distortions of argument due to differences in power or bias in the social construction of reality. They may be more deconstructionist than analytic. They are more skeptical of theory. Also, they are less likely than their predecessors to be uncritical heirs of the Western liberal tradition. The same can be said of students coming into bioethics from religious studies and theology. They too are now influenced by feminist, communitarian, and cross-cultural approaches; their theological commitments may be less doctrinal and ecclesiastical than in the past. The new generation of bioethicists, which is certainly more explicitly trained to deal with the complexities of the field, will probably bring different qualities to the public moral discourse about bioethics than did the early scholars in the field. Contributions of Religious Ethicists to Biomedical Questions Outside the field of academic bioethics, in which theologians have cooperated with philosophers, religious ethicists of many denominations have contributed to public moral discourse about developments in bio-

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Society's Choices: Social and Ethical Decision Making in Biomedicine medicine. Clergy come into frequent contact with the wrenching moral dilemmas of life and death. Many clergy today have spent time in formal training programs in hospital pastoral counseling. Theological seminaries offer courses on bioethics and their faculty often contribute to the denominational literature on its topics. Several centers of theological and religious reflection on bioethics exist with church sponsorship, among them The Park Ridge Center for the Study of Health, Faith, and Ethics, supported by the Lutheran Hospital Association; the Loma Linda Center for Christian Bioethics, affiliated with the Seventh Day Adventist Church; and the Pope John XII Medico-Moral Research Center, operated under Catholic auspices. A research center that focuses on religious and theological aspects of the Human Genome Project has been funded by the ELSI program at the Graduate Theological Union in Berkeley. Many denominations have established committees and commissions to report on bioethical issues of relevance to their faith and doctrines. In these ways, theological insights enter into public discourse about bioethics. Dangerous Ways to Present Religious Ethics Even so, certain ways of presenting religious beliefs do not contribute to clear and sound ethical decision making. Many members of religious communities consider their ethical positions to be rooted in the divine will and religiously demanded. The problem comes when persons insist that these revealed positions must be accepted by everyone else. To refuse to allow others to see matters otherwise, and thus to be wrong, may be appropriate for one's coreligionists, but it is a dangerous position to take as a citizen. This impulse often arises when persons or groups locate evil in some distinct part of the world-certain groups, certain practices, certain ideas (see the background papers by Swezey). Hopeful Developments The rapid growth of multidisciplinary work on ethics is an immensely hopeful development. This development has its counterpart in religion, as in the production of periodicals like the Journal of Religious Ethics and the many institutes, commissions, and committees that confront questions of ethics. And in no area is this more the case than in the field of biomedicine and ethics. The essays produced for this study illustrate the point: such essays would hardly have been taken seriously by medical scientists and practitioners at an earlier time, but they are of much interest to many individuals and institutions of the medical world today. Areas of tension remain and are probably inevitable. Religious views, precisely because they are religious, are likely to be held with great confi-

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Society's Choices: Social and Ethical Decision Making in Biomedicine dence and tenacity. But one should not suppose that the religious and ethical positions of any religious group are unchanging. One holds fast to what is central in one's religion, but the view of what is in fact central may and does change over time. American society faces many strains today, apart from those directly related to religion, and each of us lives within that ferment. The ferment demands attention, and urgently, and from many quarters. One thing is unmistakable: religious specialists and leaders want to be a part of the discussions, and many of them are qualified by temperament, learning, and experience to be valuable partners. SCIENTISTS AND OTHER TECHNICAL EXPERTS Do scientists as a community have any special contributions to make in decisions involving the social and ethical impacts of biomedicine? If so, what is the basis for their special status? Are there circumstances in which society inappropriately relies on science or scientists for help in making ethical decisions relating to biomedicine? The American sociologist Robert Merton (1973) described science as a field of inquiry marked by unique ethical commitments (he called them "norms") that enhance its trustworthiness. The idealized view of science stresses its openness, its universality, its institutionalized procedures for self-criticism and self-correction. These attributes might be taken to support the argument that scientists as a group are more virtuous than other communities; their ethical judgments accordingly may be considered worthy of special deference. Historical and sociological writing about science, however, undermines the notion of scientists as a community possessed of unique wisdom or virtue, even with respect to the social consequences of their own inventions. As Steven Shapin's background paper points out, we cannot deduce from the "truthfulness" of scientific claims that scientists themselves are virtuous. If anything, individual virtue and mutual trust have historically been preconditions for the production of scientific "truths" that are acknowledged as such within a community of researchers. Apart from questionable claims about scientists' special virtue, there are three additional grounds that might be advanced for why scientists should be accorded a privileged place in ethical decision making: First, science, because of its openness and critical tradition, can be thought to provide a particularly appropriate discursive model for making ethical decisions in a pluralist society. Second, scientists, because of their closeness to the practice of medicine and the use of technology, may be expected to have special insights into ethical issues arising from their practice that would not as easily be apparent to other users or consumers of technology.

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Society's Choices: Social and Ethical Decision Making in Biomedicine Third, science can be counted on to remove certain issues from ethical debate because they are "facts" and hence are no longer open to social negotiation: there is only one correct way to see them. The possibilities and limitations of these arguments are discussed below. Science as a Discursive Model Arguably, U.S. political institutions have already incorporated some important aspects of science's discursive style into procedures for ethical deliberation. Openness and rational criticism, for example, are prized and deeply embedded features of our political discourse. Openness in particular is a feature that distinguishes our political culture from that of closely related polities like Britain's (Brickman et al., 1985; Vogel, 1986). Science, however, shares the stage with law as one of the two dominant discursive traditions in America. These two traditions-the scientific and the legal-have consistently drawn on each other for legitimation and have in fact become closely intertwined over time. Judge David Bazelon of the D.C. Circuit Court, for example, defended the (ultimately ill-fated) notion of judicially imposed administrative procedures in the 1970s on the grounds that these would open up agency decisions to "peer review" (Bazelon, 1977). The Supreme Court in its recent decision in Daubert v. Merrell Dow cites peer review as a pertinent factor that courts should weigh in admitting scientific testimony (61 U.S.L.W. 4805, June 28, 1993). Equally, however, scientific bodies from the National Academy of Sciences to more specialized expert groups have adopted features of legal procedure-ideas of representation and due process, in particular-to give their opinions greater weight. Examples range from consensus development panels at NIH to the (successful) attempt by the California Medical Association to declare clinical ecology an "unscientific" theory (Jasanoff, 1991). It may not be farfetched to argue that our public moral discourse is uniquely shaped by the confluence of scientific and legal norms of criticism. Science has supplied the authoritative model for determining what kinds of arguments may be advanced in public life, whereas the law has deeply influenced our thinking about who should be allowed to make these arguments and through what procedures. This marriage of technical rationality and political diversity sometimes produces authoritative results. Other times, however, rationality frays under critical attack from divergent viewpoints. Institutional design is the primary variable that can sway outcomes in one or the other of these two directions. Some of the most robust institutions for addressing the ethical dimensions of biomedicine in the United States may be ones that combine the scientific tradition of rational criticism with the legal tradition of opening up expertise to scrutiny by non-experts or differently qualified experts.

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Society's Choices: Social and Ethical Decision Making in Biomedicine "Successful" exercises in clarifying moral questions or establishing a moral consensus around biomedicine often reflect a deeper success in combining the critical resources of science and law. For instance, a hospital ethics committee may work because it opens up previously closed medical judgments to additional lay and expert viewpoints: those of nurses, administrators, religious counselors, and, of course, family members. The committee thus is an institution that democratizes expertise. At the same time, it is a forum that exposes lay values and assumptions that might otherwise have remained unexamined to questioning from other perspectives and frames of reference, including those of medical experts. Finally, it is a forum in which the specificity of the decision and the procedural rules of the game push parties toward making negotiated compromises. Controversies about the work of ethics commissions (and public commissions more broadly) reflect our adherence to the ideals of due process as well as rationality. Thus, challenges to commissions often center on perceived violations of process values, such as inadequate representation of affected interests. As a recent reminder of the strength of these perceptions, we may recall that James Watt, former Secretary of the Interior, was forced from office because of disparaging remarks about the composition of an investigative commission. The legitimacy of commissions, in other words, seems to require the incorporation of recognized forms of political bias; to exclude relevant viewpoints-or to contest their inclusion, as Watt did-is to court public repudiation. Yet intellectual bias (with economic affiliations often taken as a convenient indicator of such bias) damages the credibility of commissions, perhaps because it negates the institutional commitment of such bodies to impartial discourse. Disqualification on grounds of intellectual bias may be the best way to describe the "voluntary" withdrawal of a member of the NAS committee on DNA fingerprinting who was felt to have inappropriately close ties to the biotechnology industry (Roberts, 1992). The values of wide representation and technically grounded rationality are most likely to conflict in forums that employ overly formal processes of criticism. For instance, the structured, adversarial format of litigation has been shown to be considerably more effective in breaking down the bases for scientific claims than in reconstructing a set of shared factual beliefs. Accordingly, institutions that promote informal negotiation among competing viewpoints are more likely to produce consensus, or at least an unbiased airing of divergent positions, than are institutions that put their primary emphasis on conceptual clarification. Scientists' Ethical Intuition It is worth noting that scientists themselves have generally been eager to disavow any special sensitivity or predictive power with respect to new

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Society's Choices: Social and Ethical Decision Making in Biomedicine technologies or their social impacts. The idea that technologies are neutral at the time of their creation has many adherents in science and engineering. The corollary is the belief that it is society-not science-that imbues technology with moral overtones by deciding how inventions will be used. These beliefs may explain why suggestions by scientists like Robert Sinsheimer (1979) that certain lines of biological research may be intrinsically dangerous and should not be pursued were generally repudiated by fellow scientists. Similarly, many geneticists and molecular biologists, including James Watson, have come to believe that the scientific community made a mistake at the 1975 Asilomar conference by seeking to prejudge the risks of recombinant DNA research. More politically sophisticated observers praise Asilomar as an important moment of self-examination but one that also happened to benefit science. The exercise was immensely effective in forestalling external regulation because it satisfied Congress for at least two decades that scientists can and do take responsibility for the consequences of their research. Yet, while many agree that Asilomar overstated the physical risks of laboratory-based recombinant DNA research, the realization has also grown that moral, social, and even environmental risks were underappreciated, possibly because of the relatively closed technical nature of the debate. Recent scholarly writing in history, sociology, and politics has done much to dispel the notion of the neutrality of scientific discoveries and technological artifacts. In particular, we have grown used to the idea that technologies should be seen as products of social negotiation that necessarily incorporate trade-offs among competing values (Bijker et al., 1990). Technologies, particularly large and complex ones, are said to "have politics" in the sense that they presume the existence of particular social and cultural organizations for their management and control (Winner, 1986). Far from being rigidly bounded inanimate objects, modern technologies are regarded as systems in which things, people, skills, practices, institutions, and so forth are united in "networks" or "seamless webs" (Hughes, 1983; Latour, 1988). Technologies also have a fluid and changeable dimension, since they can be altered by the practices of their users. A simple example is the use of a drug that has been approved for one indication to treat another unapproved indication. These new perspectives provide a basis for thinking that scientists may after all have special moral insights into the products of their ingenuity. By stressing features of social and cultural embeddedness, recent scholarly accounts help to read values back into science and technology. As central participants in the project of creating and applying expert knowledge, scientists necessarily participate in shaping the moral and political character of technological products. Participation in public moral discourse may help them to make their value commitments explicit, and then integrate these

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Society's Choices: Social and Ethical Decision Making in Biomedicine values into decision making. By contrast, preserving the fiction of scientific neutrality, and thus excluding scientists from full participation in ethical debate, may deprive society of an important avenue of moral criticism. The difficulty, of course, is that the research community seems often not to be aware of the social and ethical judgments that are embedded in the practice of science or the design of technology. This is an area where feminist critiques of science have opened a discussion of the preconceptions of science (Keller, 1985; Haraway, 1989). For example, there is now general agreement that women's health issues have received disproportionately little attention in biomedical research and that study designs have often been insensitive to questions of gender and culture. One illustration is the case of clinical trials of contraceptives that assumed, inappropriately, that the characteristics of user populations in the developing countries would be the same as those in industrialized countries. Examples such as this suggest that, in order to play an effective part in public moral discourse, scientists may first need to develop a more reflective understanding of the ways in which they do science. Facts and Values Social and political institutions continue in hard cases to delegate to science the power to make binding ethical judgments. Such delegation often takes place in the guise of seeking a consensus on facts and then allowing these facts to dictate rules of action. Thus, medical expertise has variously been called upon to define "viability" for purposes of distinguishing lawful from unlawful abortions; to define "death" so as to guide the use of life-prolonging technologies; and to define "pre-embryos" in order to establish the limits of permissible research with the human concepts. Building a scientific consensus around such morally loaded concepts can be a convenient way of ending disputes. Science then appears to draw a bright line that neatly separates permissible from impermissible social action. The facts provided by science constitute a seemingly objective basis for distinguishing right from wrong behavior. Although this strategy of delegation may work well in terms of producing social harmony, we should keep in mind one or two caveats. First, as noted above, Americans are not in general given to unquestioning acceptance of the authority of science. Indeed, our legal system has been a powerful instrument for holding scientific experts accountable to lay members of the public. In part, the law accomplishes this result by making scientists speak in language that is accessible to nonexperts; this requirement has been particularly emphasized in the judicial review of agency decisions. Further, the adversarial processes of the law very effectively probe the basis for scientific claims and expose the assumptions and judg-

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Society's Choices: Social and Ethical Decision Making in Biomedicine ments that have gone into the production of alleged facts. Finally, our courts have in most cases refused to let legal outcomes be decided by technical consensus alone. Witness, for example, the judicial insistence that the expert's role in court is to assist the fact-finder, not to make the ultimate factual assessment (see Daubert v. Merrell Dow, cited above). Second, many studies of scientific controversies have called attention to the point that what passes for "fact" on either side is often a construct that incorporates clear elements of subjective judgment. The factual character of such "mixed" assertions can nevertheless be upheld through successful boundary drawing. For example, scientific advisory committees often effectively represent their views as "science" or as "fact" simply on the strength of their institutional role-which is to give factual or scientific advice (Jasanoff, 1990). If the boundaries are drawn tightly enough (e.g., when the experts are especially prestigious or closely knit), then others do not think of questioning the epistemological status of the claims advanced as ''science." Accepting the boundaries that scientists draw in such instances, however, abdicates some degree of moral authority to experts. This insight has repeatedly caused U.S. policymakers to insist that important advisory bodies include lay opinions or, at the very least, a wide spectrum of scientific viewpoints. Outlook Summing up the three points discussed above, it is fair to say that scientists do have a special role in making ethical decisions at the frontiers of biomedicine. This role derives from their close involvement in the processes of discovery and technological innovation and their subsequent experience in monitoring and utilizing technologies in a health care context. Yet for scientists to play their ethical part most effectively, they need to be involved in forums that open up their perspectives and underlying assumptions to critical evaluation. Scientific advice will tend to be least ethically sensitive when it is offered as unexamined "fact." It may advance social decisions most in a context that forces scientists to become aware of their own value commitments. For such reflexivity to become routine among scientists working in changing areas of biomedicine, it may be necessary to broaden scientists' training to include formal work on the social and ethical foundations of scientific knowledge and practice. HEALTH CARE PROFESSIONAL EDUCATION Origins Many of the improvements that make modern medicine so powerful in treating patients have resulted directly from the advances in our under-

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Society's Choices: Social and Ethical Decision Making in Biomedicine standing of disease processes made possible by biomedical research efforts. These advances are rapidly incorporated into the education of health care professionals in science-intensive curricula. The pressure of the ever-increasing scientific content of the medical school curriculum, as well as the emphasis on a mechanistic, reductionist model of disease, important for the students' understanding of modern diseases, threatens to force the teachings about caring for the emotional and psychological stresses on the patients with the diseases into a back seat. Although many health care professionals believed that the formal teaching of ethics was unnecessary, progress was being made to include ethics courses in the curriculum, frequently as an elective. The Society for Health and Human Values, founded in 1968, established a program through which consultations were provided to medical schools interested in initiating courses aimed at exploring the ethical and human values dimensions of the health care enterprise. Throughout the following decade, faculty trained in the humanities began to appear in gradually increasing numbers on medical school faculties. In 1984, the Association of American Medical Colleges (AAMC) released a Report on the General Professional Education of the Physician and College Preparation for Medicine (GPEP), in response to what was perceived as a continuing and even accelerating erosion of the general education for physicians (Muller, 1984). This forward-looking report was aimed at helping the profession (and ultimately the patient) accommodate to the rapid advances that were occurring in biomedical science and technology, including the more complex and potentially more onerous treatments that were emerging. It also called attention to social, environmental, and lifestyle determinants of poor health status and increasing burdens of illness issues that in the previous two decades had been overshadowed by medicine's focus on technology (Muller, 1984). GPEP's ethical dimension is captured in the introduction, written by chair Steven Muller: We believe that every physician should be caring, compassionate, and dedicated to patients-to keeping them well and to helping them when they are ill. Each should be committed to work, to learning, to rationality, to science, and to serving the greater society. Ethical sensitivity and moral integrity, combined with equanimity, humility, and self-knowledge, are quite essential qualities of all physicians. It comes as no surprise that the first recommendation of the report was for a general professional education of the physician in which medical faculties emphasize the acquisition and development of social skills, personal values, and attitudes by students at least to the same extent as they emphasize the acquisition of technical knowledge. Unfortunately, the report had little early detectable effect on the medical curriculum.

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Society's Choices: Social and Ethical Decision Making in Biomedicine Sociologist Renee Fox has noted the repeated, unsuccessful calls for such changes in medical education. In a penetrating article (1990), Fox explored the origins and possible remedies for the lack of broader social awareness among physicians. A highly analytic, logico-rational way of thinking and viewing the world, which produces a chain of dichotomies (mind versus body, thought versus feeling, objective versus subjective, self versus other, and individual versus social), is evident in the medical curriculum in, for example, considerations of biomedical versus psycho social components. A second source of difficulty in developing caring competence in physicians is the "dehumanizing" and "brutalizing" effect of medical education on students. Medical students may experience these effects when they confront human suffering without sufficient mentoring, on exhausting schedules, and in the face of the scientific determinism and reductionism that characterizes molecular biology. Fox suggested several strategies for making medical education and, ultimately, medical care, more humanistic: more awareness of how biomedicine is imprinted with dichotomies that split competence from caring; more attention to the cognitive content of medicine; more attention to the defense mechanisms developed during training and their implications for humane competence; more effort to ensuring felicitous timing for training experiences; and a return by teachers to firsthand teaching. As medical education has evolved to encompass ethics, a similar process has occurred in the other health professions. In 1983, for example, the American Dental Association (ADA) established a number of guidelines to serve as the ethical basis of the profession. The ADA Committee on the Future of Dentistry recommended that methods be designed to assess attitudes and interpersonal skills of dental school applicants and to identify values, preferences, and goals of recent dental graduates (ADA, 1983). In response to these two efforts, dental educator Muriel Bebeau designed a curriculum based on real-life ethical problems to help dental students identify, reason about, and adequately resolve ethical problems in the dental profession. Other schools have modeled programs using her insights. Nursing schools have also developed educational programs in ethics. A 1986 report of the American Association of Colleges of Nursing (AACN) identified "essential" values to be addressed in the curriculum of nursing ethics: these are altruism, equality, aesthetics, freedom, human dignity, justice, and truth (AACN, 1986). While some of the social and ethical issues facing doctors, dentists, and nurses are unique to their specific medical disciplines, the health profes-

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Society's Choices: Social and Ethical Decision Making in Biomedicine sions share many of the same concerns. Possible goals of ethics education programs reflect those common issues: To promote understanding of one's own moral positions as well as understanding and tolerance toward views of others in our pluralistic society. To recognize ethical issues in medical practice and biomedical research, to improve skills for critical reasoning and analysis, and to influence in a positive manner the health care professional's moral maturity (Self, 1988; Bickel, 1991, 1993; Culver et al., 1985). To promote health care professionals' social responsibilities to patients and the public, in other words, to aid the individual professional in understanding his/her role within the rest of the society, thus encouraging individual professional activity within the legitimate constraints of social institutions and community values. To understand the relationship between ill health and the social context of disease (Tarlov, 1992; Maheux et al., 1990). A 1987 AAMC survey of the medical ethics curricula, "Integrating Human Values Teaching Programs Into Medical Students' Clinical Education," examined 113 course descriptions from the 1984-1985 school year and 99 completed surveys from the 126 medical schools contacted. Ninety five schools (84 percent) required students to complete a human values course in the first two years, while 38 schools (34 percent) required such a course in the last two years. Developments since 1980 included a reinforcement or addition of human values emphasis during clerkships, addition of one or more required human values courses into year one or two, enhancement of human values emphasis in existing preclinical courses, and improved integration of human values programs. The report finds that ethics education often becomes integrated into the traditional curriculum in definable stages, moving from preclinical courses given by humanities and/or social sciences faculty, to subspecialty conferences and ethic rounds, to more formal presentations and participation by the faculty in clinical education of clerks and residents, to more formal commitments from clinical departments and school administration. Barriers to integration of ethics education into the curriculum include funding constraints, emphasis on memorizing material rather than reflecting on it, competing faculty priorities, departmental segregation, nonoptimal inpatient teaching environment (e.g., shorter hospital stays), lack of role models, and the dehumanizing aspects of medical education. The report also notes the need to develop further mechanisms to improve human values education for residents. More recent studies have attempted to define goals and basic curricula in medical ethics for medical students (Culver et al., 1985), for clinicians and ethics committee members (Thornton et al., 1993), and for internists

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Society's Choices: Social and Ethical Decision Making in Biomedicine (ABIM, 1983). The Kennedy Institute has published a survey of the literature in this area (Coutts, 1991). Contributions Table 3-1 demonstrates the great number of medical schools that are teaching courses related to ethical and social concerns, as well as the diversity of curricular approaches to ethics-related topics. The variation in approaches may be related to the resources available at each school, as well as to the diversified subject matter, goals, and interests of the faculty. Do such curricular additions have any impact on the individuals in training? The work of Lawrence Kohlberg (1980, 1984) supports the idea that moral reasoning ability is facilitated by exposing individuals to dilemmas that challenge one's current level of moral reasoning skills. Other studies reveal that moral development continues throughout formal education and can be dramatic in early adulthood (the time of professional training), and that well-developed educational interventions can enhance ethical consciousness and commitment (Rest, 1988; Blasi, 1980; Josephson, 1988; Leming, 1981). TABLE 3-1 Number of U.S. and Canadian Medical Schools Teaching Selected Topics as Required Course Material (n = 139a) Topics Part of Existing Course, Required Separate Course, Required Do Not Offer Data Not Available Computer applications in medicine 92 7 18 15 Cost containment 117 2 9 9 Death and dying 127 4 1 4 Domestic violence 95 0 23 18 History of medicine 53 10 38 25 Law and medicine (medical jurisprudence) 85 17 21 21 Literature and medicine 40 2 52 37 Long-term health care 105 7 9 17 Medical ethics 83 56 0 3 Physician-patient relationship 117 15 0 4 Termination of pregnancy 106 1 21 9 a Data for the four University of Illinois schools (Chicago, Peoria, Rockford, and Urbana- Champaign) were tallied individually. Six of the 145 (126 U.S., 16 Canadian, and 3 Puerto Rican) medical schools did not respond and are not included in this table. SOURCE: Adapted from Association of American Medical Colleges (AAMC) Curriculum Directory, 1992-93 (21st Edition). Washington, D.C.: AAMC.

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