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Bioethics, our crowd, and ideology.

Not long ago, Philippe Lazar, Director General of the French biomedical agency INSERM - the equivalent of our National Institutes of Health - complained about the impact of bioethics in his country. Not only, he said, has it led to restrictive legislation, smothering a diversity of ethical opinion because of the fears of a minority, it has also over-emphasized the potential abuses of scientific knowledge rather than the new possibilities it offers.

I read that news with a sigh of nostalgia. They used to say that about us. Not any more.

In this country those who would legitimate morally controverted scientific research long ago learned how to put together commissions and panels to include sympathetic and progress-affirming ethicists. In the early days of bioethics there was an interesting debate between the views of Joseph Fletcher - who never said no - and those of Paul Ramsey - who usually said no and who argued that the capacity to do so was a test of moral seriousness. It appears that Fletcher won the day. While bioethics creates problems now and then for mainstream, right-thinking trends, it mainly serves to legitimate them, adding the imprimatur of ethical expertise to what somebody or other wants to do. It is hardly likely that the National Institutes of Health (NIH) Human Genome Project would have set aside 5 percent of its annual budget for the Ethical, Legal, and Social Implications program if there had been even the faintest likelihood it would turn into a source of trouble and opposition; and it indeed hasn't.

Now my generalizations are not wholly reasonable or fair. It is by no means the case that all forms of biomedical research deserve a "no"; most in fact merit a moral defense. Nor is it the case that everyone in bioethics is a patsy, easy to co-opt into the service of biomedical aspiration. Though she was a cochair of the NIH embryo research panel, Patricia King boldly opposed its recommendation that embryos be created for research purposes. I have no doubt, moreover, that many of those ethicists who give out what Richard John Neuhaus has called "permission slips" are as serious, as full of gravilas, as those who say no. Only the morally smug could think all virtue is on one side or the other in most bioethical debates.

Yet even as I concede these points I remain uneasy. While they thankfully have little of the nastiness that marks the larger moral struggles of our society, the bioethical debates are beginning to reflect those culture wars. Isn't it increasingly easy to predict the "expert" views of bioethicists knowing only their age, religious convictions (or nonconvictions), educational background, and social class? This first became evident in the abortion debate but has now spread to physician-assisted suicide, fetal tissue and embryo research, surrogate reproduction, and assorted other issues. It is not, it seems, ethical theory of the kind bioethicists like to include in the textbooks that makes much difference, but plain old-fashioned ideology - whether one is, to paraphrase Gilbert and Sullivan, "acculturated as a little liberal or a little conservative."

Perhaps this was inevitable once bioethics entered the mainstream, becoming a respectable part of the biomedical establishment. Bioethics ceased being a cultural curiosity, or a neighborhood crank, and became an accommodating handmaiden. Its practitioners came in with the trappings of the culture around them. In any case, few can say no all or most of the time over many years without a loss of credibility, and it gets wearisome in any case.

I do not by any means exclude myself or The Hastings Center from this observation. We courted legitimacy, sought money from the big foundations, tried to make it in the higher reaches of academia, and endlessly worked to persuade physicians and biomedical researchers that we should be seen as allies and not opponents. That was not a pose. We felt that way and worked to convey that feeling. We succeeded. It has been left to the likes of Jeremy Rifkin, a real outsider, to cause trouble. We are relieved to say that he is not one of us. I'm not sure we should be proud of that. We became insiders by default, without ever resolving in any full way the question of whether those who pursue bioethics should be insiders or outsiders.

What would I like to see in the future? First, I would hope that bioethicists will be wary of serving on any national or public commission where there is a reasonable certainty that its political aim is to legitimate a controverted research or policy proposal. This does not mean that those in ethics can never say yes. If one happens to agree with the proposal, then one should write independently in its favor, making the best case one can. It is the formal and official legitimation of ethical expertise that should be avoided; and that is usually just what some commissions and panels are after.

Second, while it would be naive to expect that bioethics could or should be ethically neutral, it should aim to respect the different positions in the debates that break out. This point seems to be stating a banality but of late there has been an increasing embrace of strong advocacy as a proper role for those in bioethics. To be sure, one's moral convictions should be pursued and advocated; no problem there. But this needs always to be done in a way that takes the enterprise of bioethics seriously: fairly and carefully stating opposing positions, looking always for their best exemplifications; avoiding the kind of courtroom, daytime-TV-show polemic and bombast that have come to pass for civil discourse in our society, and to be acutely aware of one's own ideological bias, lying like a snake in the grass below one's arguments and supposedly rational convictions step on that snake sometimes.

Third, cause trouble now and then with one's own crowd. Say something nice (and liberal) about bioethics in the journals Commentary and First Thing. Submit an attack on abortion and euthanasia to the Australian journal Bioethics. Send the Hasting Center Report a paper in favor of physician paternalism. Invite Jeremy Rifkin to be part of a study group on biotechnology at the Institute of Medicine. If we are lucky and do our work well, the director of NIH may someday emulate his French counterpart and think us a potential menace. Jerry Falwell and Pat Robertson probably already have such thoughts. But that's too easy.

Bioethics,

Whose Crowd,

and What Ideology?

Dan Callahan has, in his usual fashion, written a provocative statement: "In this country those who would legitimate morally controverted scientific research long ago learned how to put together commissions and panels to include sympathetic and progress affirming ethicists." As one who long ago sat on the first two big commissions, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission) and the President's Commission on the Study of Ethical Issues in Medicine and Biomedical and Behavioral Research (President's Commission), I deny that my colleagues and I "legitimated" anything, much less any "morally controverted research." I think the same can be said of those who served on the short-lived Ethics Advisory Board, on the Tuskegee Panel, and on the NIH Fetal Tissue Panel. "Our crowd" provided real "ethicists" for all these groups. They were hardly of the same "ideology" - Father McCormick and Sissela Bok? Jim Childress and Father Burtchaell? These ethicists and all the panelists argued vigorously point by point. When the results were in, someone could say that the National Commission "legitimized" research involving children, which Paul Ramsey repudiated and Richard McCormick justified, and that the Fetal Tissue Panel "legitimized" abortion, which Father Burtchaell considered an impassable barrier and Jim Childress viewed as a manageable public policy matter. Pat King is certainly not the only ethicist who has "boldly opposed" a recommendation.

I don't intend to pick out, panel by panel, the "sympathetic and progress-affirming ethicists." and set them against their opposites, who might be called "the critical and conservative ethicists." I have something more theoretical to say. The "morally controverted" issues do attract partisans around each pole of the controversy. Those partisans preach what we loosely call "ideologies' (although usually their repetitious sermons are much shallower than real "ideologies," looking more like prejudices than philosophies). The morally controverted issue then takes on its public shape as a World War I battlefield, two deeply entrenched armies facing each other across a desolate no-person's land, shooting at each other what they hope are lethal arguments. As this happens, more and more of the noncombatants get caught up in the fight and add their voices, if not their ideas.

I think the world of ethics, as it has evolved over the last three decades, is a much more peaceful place and its ethicists a much more irenic crowd. Not that they don't argue; not that they don't have strong affections and disaffections. And, of course, we must confess, under the baleful eye of the "critical theorists," that every superficially objective analysis hides an ugly ideology. But the characteristic intellectual attitude of the modern practical ethicist is puzzlement-genuine puzzlement before ambiguity. The ethics of science and medicine differs from the moral arguments over warfare, slavery, subjection of women, tyranny, and torture. These are evils embedded in a culture and the moral controversy concerns how to expel them. Ethicists in such controversies must be bold and brave. In science and medicine, the enterprises are themselves valuable. Experimentation yields new knowledge, which is a human value. Molecular genetics reveals the deep roots of disease, which is a human good. Life-sustaining technology saves imperiled lives, which is a human benefit. Yet, as these became part of modern medicine, many perceived that they had dark sides: exploitation, discrimination, deprivation of quality of life. The ethically problematic feature of the new medicine was its radical ambiguity. The ethical task in the new medicine was to sort out the goods and the bads in each of its pieces. Thirty years ago, theologian Helmut Thielicke closed an ethics conference at Texas Medical Center, Houston, with the words, "there is an ambiguity about man's creativity ... the ambiguity of progress."

It is my view that the "crowd" that became "bioethicists" perceived that ambiguity. Puzzlement is the proper attitude before ambiguity. And a philosophical puzzlement is productive. It seeks, by clarification of ideas and criticism of arguments, to point toward a solution that often will be only the best among almost equally problematic options. Those of us on the National Commission sat down at the table amidst a storm over research with human fetuses; by the time we rose from the table, we had learned how much good can come from fetal research and how enthusiastic researchers could propose means to this good end that pushed the bounds of moral decency. It was our task to elucidate what those bounds might be and to distinguish the right from the wrong way. We tried, and I think succeeded, in capturing those distinctions and in translating them into the clumsy language of regulation. The politicians and the bureaucrats, however, attentive to the cries of the partisans, were not comfortable with our careful disjunctions and imposed a crippling moratorium on fetal research. The ethicists did not do that; the partisans did. For several years, the President's Commission was sheltered from the partisans. Ethicists argued within that shelter about the ambiguities of forgoing fife support, genetic screening, and even the "morally controverted" subject of genetic engineering. Then the partisans, who had lurked outside, were let in. New commissioners, appointed by a new administration, had little tolerance for ambiguity and for fashioning solutions that promoted the best among equally problematic options. They came to the problems with their answers ready. Fortunately, they came too late to have much effect.

The next effort to form an ethics commission was crippled and eventually destroyed by partisanship. The Congressional Biomedical Ethics Board was infected from the start, since its members were all partisans by definition, namely members of Congress. Its advisory committee was never inoculated from that infection, since each congressman had a voice in the choice of the advisors. That unhappy Siamese twin, joined by the common bond of political ideology, died soon after its birth. It was not, however, "our crowd" that did it in. Its chair, who was one of our crowd, Alex Capron, did his best to replicate the sheltered world of the old commissions, but the power of partisanship triumphed momentarily - and then expired.

Here Dan's warning must be heeded: "I would hope that bioethicists will be wary of serving on any national or public commission where there is a reasonable certainty that its political aim is to legitimate a controverted research or policy proposal." I hope the same and more. It may be hard to see, at first, how a future "bioethics" commission might have such an aim. However, if the subject matter is either the beginning or the ending of life, one can be almost certain that any decent bioethical analysis, acknowledging the ambiguities inherent in these most human of moments, will be captured and either killed or enslaved by partisanship. I am still satisfied that most of "our crowd" dwell in the world of intellectual ambiguity and are convinced that solutions must find their way amidst the least worst options. I do not yet fear that our crowd has been seduced by partisan ideologies. I do worry that the partisans will either ignore us or breed up their own "ethicists" who have little tolerance for moral ambiguity or for democratic solutions that permit us all to live tolerably well amidst the puzzles that beset us.

More Than Bioethics

In the spirit of nostalgic regret, gentle rebuke, and witty challenge, Daniel Callahan writes about what he regards as one of the major concomitants of the success-in-the-world that American bioethics has achieved since the founding of The Hastings Center in 1969. It is largely to the progressive institutionalization that bioethics has undergone and to the increased legitimacy it has attained that Dan Callahan attributes what he characterizes as the current tendency of bioethics to play the role of "accommodating handmaiden" to "mainstream right-thinking." He pensively portrays the "early days of bioethics" as a time when voices like those of Paul Ramsey were more frequently "heard in our [bioethics] land," speaking of morally binding "ought nots," as well as "oughts," out of his sense of "the covenant" between physicians and patients, and researchers and subjects (viewed as special cases of moral requirements governing all human relations),(1) and also out of what another ancestral figure in bioethics - Hans Jonas - termed a "heuristics of fear" about "what is possibly at stake and what we must beware of " in this age of advanced science and technology.(2)

Dan Callahan's statement is premised on a number of assumptions. It implies that: (1) bioethics is, or at least, ideally ought to be, a discipline rather than an ideology; (2) there are individuals and groups who can uncontestably be called bioethicists, and who belong to a professional community that is distinguishable and solitary enough to be colloquially described as "our crowd"; (3) although the "enterprise" of bioethics cannot be expected to be "ethically neutral," and one's own moral convictions should not be abandoned on its behalf, it is nonetheless unfortunate that many of bioethics' practitioners" came to the field "with the trappings of the culture around them"; and (4) in the golden, founding years of American bioethics, the ethos of the nascent field was notably independent of the value climate of the society in which it was emerging, and the perspectives that bioethicists brought to bear on the moral questions they examined were likely to run counter to the prevailing status quo.

I share Dan's uneasiness about some of the traits of success, respectability, and "establishment-arianism" that characterize U.S. bioethics. However, my view of bioethics - its inception and evolution, what it is and what it should - differ from his in certain respects.

To begin with, as I have written elsewhere, bioethics is not, and never has been, "just bioethics." By this I mean several things. First, there has always been ambiguity about whether bioethics could or should be defined in strict disciplinary and academic terms. Although its founders and most prominent contributors have been highly trained in particular disciplines (preeminently, philosophy, theology, the law, and medicine), from the outset of its history, bioethics has been a multidisciplinary field, actively involved in clinical and policy application, as well as in reflection and inquiry, whose locus and outreach extend beyond the academy and professional enclaves into the public domain. Paradoxically, as bioethics has become more recognized and consolidated institutionally, the conception of the field, of its orbit, and of its practitioners has become more diffuse and imprecise. To give two illustrative examples: Medical educators are presently inclined to affix the label "bioethics" to a good deal of what they try to teach medical students about the psychological, social, and cultural, as well as the moral aspects of health, illness, and medicine. And nowadays, a sociologist of medicine like myself is more likely to be introduced to whatever audience I address as an "ethicist" or "bioethicist," than a social scientist.

The expansionary use of the term ethicist (a word, James Gustafson points out, that was not in our vocabulary until the end of the 1960s)(3) is connected with a larger social phenomenon fundamental to the genesis and unfolding of U.S. bioethics and its "more-than-bioethics" status. This is the rise of philosophical, professional, and public interest in the United States over the past few decades in moral problems encountered in various spheres of American life - a development that sufficiently resembles a social movement to have been humorously dubbed, "ethicizationism ... in America" by New York Times columnist, Russell Baker.(4) Within this context, the greatest amount of ethical attention has been consistently focused on questions and quandaries endemic to modern medicine, particularly some of its scientific and technological advances, around which the domain of bioethics has crystallized.

In this sense, American bioethics is an expression and a part of the society and culture from which it has emanated. Furthermore, one of the most salient features of its outlook and discourse - the supreme importance that it attaches to the value complex of individualism - has been significantly affected by the converging influence of the paramountcy of individualism in American cultural tradition, the emphasis on individual fights and the neo-individualism of the decades in which bioethics has emerged, and the centrality of the principle of autonomy in Anglo-American analytic philosophy, which has been the regnant intellectual framework of American bioethical thought.

American bioethics is imprinted in these and other regards with "American-ness" (just as la bioethique francaise is marked by "French-ness") - with what Dan Callahan has ruefully called "the trappings of the culture around [it]." But how could it be totally acultural or transcultural, given the other than strictly disciplinary nature of what bioethics is and represents? To concede this is not tantamount to saying that the field is rife with ideological advocacy or polemical partisanship. Yet the ideal of forging an ethics that is sufficiently neutral and universalistic to surmount all social, cultural, and historical influences and differences is so strongly espoused by American bioethicists that when Judith Swazey and I published an article in 1984 that was critical of what we regarded as their systematic inattentativeness to the social and cultural sources and implication of their thought,(5) we were accused of being "bioethics bashers" in print, and temporarily consigned to the rank of persona non grata. The commitment to a culture-free moral universalism, along with the apprehensive conviction that the influence of social and cultural factors on ethical reasoning can contaminate and subvert this pan-human vision have contributed to another characteristic of American bioethics: its aloof and strained relationship to the social sciences.

Unlike Dan Callahan, I would not portray the initial years of U.S. bioethics as a period of moral debate and "nay-saying" that shook the foundations of mainstream thinking. Voices like Paul Ramsey's and Hans Jonas's were rare even then. And it always struck me as curious that although they were venerated figures among bioethicists, their perspectives (that of Christian ethics in the case of Paul Ramsey, and of Heideggerian philosophical ethics underpinned by metaphysics in the case of Hans Jonas) had little influence on the master conceptual framework of the field - the principlism of analytic philosophy.

It was in the area of human experimentation that American bioethics had the greatest reformist impact at its inception, chiefly through the development of the concept of informed consent, and the field's active involvement in promoting the "self-determination" of research subjects (and of patients more generally), in the face of medical authority, the burdens of illness, and the vulnerabilities of disadvantage. And yet, from the outset, the Geist of bioethics has been markedly conservative. Paradoxically, one of the major sources of its conservatism is the same espousal of individual rights, autonomy, and self-determination that gave bioethics its reformist edge in its approach to human experimentation.

By and large, the priority that bioethics has accorded to individualism has not only diverted its gaze from particular kinds of social issues, especially those that affect persons in our society who are poor, discriminated against, and marginalized, but it has also driven a wedge between what are defined as social and as ethical matters. Bioethics, for example, has devoted more attention to questions pertaining to the forgoing of life-sustaining treatment of infants in the neonatal intensive care unit than to why a disproportionately high number of extremely premature infants, of very low birth weight, with severe congential abnormalities, cared for in such a unit, are born to mothers from deprived socioeconomic backgrounds.

My most memorable personal experience with the tendency of bioethics to separate the ethical and the social occurred in the context of my service on the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research from 1979 to 1982 when, to my dismay, a number of commissioners argued that although inequitable access to health care in the United States was a serious problem, and we had been mandated by Congress to "study the ethical and legal implications of differences in the availability of health services as determined by income or residence of the person receiving the service,"(6) it was not a topic appropriate for our deliberation because it was a social issue, with policy and political implications, rather than an ethical one. After a period of intense negotiation, the Commission agreed to undertake the study, and to include race and ethnic origins as additional factors to be examined in evaluating differences in the availability of health care. The result was the volume entitled Securing Access to Health Care, published in March 1983, with whose conclusions not all the members of the commission agreed.

Finally, it seems to me that throughout its history, bioethics has been more reactive than proactive. For example, at present it is more energetically involved in ethical issues associated with physician-assisted suicide that have captured public, media, and legislative attention than with the everyday challenges to physician ethics posed by the changing health care delivery system in the United States, especially by the proliferation of marketplace-oriented managed care organizations and health plans.

For bioethics to do its work well, in ways that will make it the kind of "menace" that Daniel Callahan asks of it, will not only take thoughful collective analysis, self-analysis, and resolve, but also the transformation of some of the field's earliest and most tenacious attributes.

References

[1.] Paul Ramsey, The Patient as Person: Explorations in Me" Ethics (New Haven: Yale University Press, 1970), pp. xi-xii. [2.] Hans Jonas, The Imperative of Responsability: In Search of an Ethics for the Technological Age (Chicago: The University of Chicago Press, 1984), p. x. [3.] James M. Gustafson, 'Ethics: An American Growth Industry,' Key Rep" 56 (1991): 1-5. [4.] Russell Baker, Ethicizationism," New York Times, 27 October 1990. [5.] Rende C. Fox and Judith P. Swazey, "Medical Morality Is Not Bioethics - Medical Ethics in China and the United States,'perspectives in Biology and medicine 27 (1984): 336-60. [6.] 42 U.S.C. [sections] 300v-1 (a) (1) (D) (Supp. 1981).
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Title Annotation:In Search of the Good Society: The Work of Daniel Callahan; includes commentaries
Author:Jonsen, Albert R.; Fox, Renee C.
Publication:The Hastings Center Report
Date:Nov 1, 1996
Words:4051
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