"La Pénible Valse Hésitation"1: Fetal Tissue Research Review and the Use of Bioethics Commissions in France and the United States

R. ALTA CHARO, J.D.

Assistant Professor, Program in Medical Ethics, School of Law, University of Wisconsin, Madison

[Unlike the naive rationality of the French Revolution, in which ignorance was always bad for mankind,] it is understood today that ignorance is not the only enemy of man, and that science must submit to a superior morality if it is to continue to be his ally. Oppenheimer had already faced this conflict when he stood before the atom bomb. The advances in genetics that bring benefits but also exceptional risks to humanity lead us to the same dilemma.... Our society has as much need of philosophers as it does of scientists.2

The unyielding antiabortion stance of the Bush and Reagan administrations, combined with the continuing mutual distrust between abortion rights advocates and antiabortion forces in Congress, has created a growing paralysis on vital bioethical matters. For example:

  • The congressional Biomedical Ethics Advisory Committee and the board that appointed it collapsed in a political squabble centered on abortion. The committee was supposed to report to Congress on such issues as human genetic research, fetal research, and the withholding of food and water from dying patients.

  • Experiments deemed scientifically worthwhile by National Institutes of Health reviewers have gone unfunded because a federal ethics board that must review them doesn't exist.

  • Candidates for scientific posts in the Department of Health and Human Services under the Reagan and Bush administrations were asked their positions on abortion and fetal tissue transplants, leading some to withdraw from consideration.



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Society's Choices: Social and Ethical Decision Making in Biomedicine "La Pénible Valse Hésitation"1: Fetal Tissue Research Review and the Use of Bioethics Commissions in France and the United States R. ALTA CHARO, J.D. Assistant Professor, Program in Medical Ethics, School of Law, University of Wisconsin, Madison [Unlike the naive rationality of the French Revolution, in which ignorance was always bad for mankind,] it is understood today that ignorance is not the only enemy of man, and that science must submit to a superior morality if it is to continue to be his ally. Oppenheimer had already faced this conflict when he stood before the atom bomb. The advances in genetics that bring benefits but also exceptional risks to humanity lead us to the same dilemma.... Our society has as much need of philosophers as it does of scientists.2 The unyielding antiabortion stance of the Bush and Reagan administrations, combined with the continuing mutual distrust between abortion rights advocates and antiabortion forces in Congress, has created a growing paralysis on vital bioethical matters. For example: The congressional Biomedical Ethics Advisory Committee and the board that appointed it collapsed in a political squabble centered on abortion. The committee was supposed to report to Congress on such issues as human genetic research, fetal research, and the withholding of food and water from dying patients. Experiments deemed scientifically worthwhile by National Institutes of Health reviewers have gone unfunded because a federal ethics board that must review them doesn't exist. Candidates for scientific posts in the Department of Health and Human Services under the Reagan and Bush administrations were asked their positions on abortion and fetal tissue transplants, leading some to withdraw from consideration.

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Society's Choices: Social and Ethical Decision Making in Biomedicine Potentially valuable drugs, such as RU486, are left relatively uninvestigated in the United States because the private sector perceives the likelihood of a biased federal review and hostile public reaction. Both the United States and France have attempted to use bioethics commissions to overcome these tensions, and to smooth the way toward coordinated public policy, whether in the form of executive action or legislation. The French experience, however, may prove somewhat more successful. In part this is due to the differing political traditions of the two nations. In part, it reflects a simpler conflict to be addressed by the French commissions. The long history of central government, whether by monarchy or Paris based national legislatures, has made the French public more apt to accept the pronouncements of national commissions. And a comparative review of national bioethics commissions by Sonia Le Bris of the University of Montreal found that centralized nations tended, not surprisingly, to have centralized (though still purely advisory) bioethics commissions.3 The correlate to this phenomenon is that French commissions appear to take far longer to develop their positions, as there is no federalist system by which local commissions can experiment with different legal approaches to the same problem. Further, in the absence of the laboratory of state governments, the French commissions appear to make a genuine effort to ground their pronouncements in an appeal to universal values, often characterized as philosophical precepts.4 " If it's not scientific, it's not ethics,"5 declared Jean Bernard, former chairman of the French national bioethics commission (the "Comité Consultatif National d'Éthique pour la Santé et les Sciences de la Vie" or CCNE).6 And from a political viewpoint, the French parliament viewed much of the CCNE's work as consistent with the very definition of a "liberal" (in the European sense of the word) democracy: We wanted to set the least restrictive rules of a tolerant society, each person being free to impose upon himself or herself the strictest possible code consonant with his or her convictions and free to forgo possibilities offered under the law. To want to impose upon all a religious morality that, by definition applies only to the individual, would not only be a grave error vis-à-vis our fellow citizens, but also would seriously overstep the authority of Parliament. We must, at any price avoid a moral order which, imposed by some, would tell others what is good and bad.7 This attitude helped to maintain the impression that the conclusions of this commission were somehow inevitable, rather than merely reactions to the political and legal temperament of the times. For example, the French view the experience of German commissions, which have been extraordinarily strict with regard to biotechnology, as a continuing response to the Nazi era. Spain's unusually liberal rules on assisted reproduction are

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Society's Choices: Social and Ethical Decision Making in Biomedicine viewed as a reaction to Franco's years of conservative rule. And, of course, American deliberations are seen as reflecting, more than anything else, the political divide created by legal abortion. In France, politicians and philosophers like to think that their reflections are less driven by political history and more by ethical analysis. 8 This paper will briefly compare the CCNE with the U.S. commission appointed to examine the use of fetal tissue in federally funded research.9 As the French have had little to say on the issue of fetal tissue,10 the examination of the French commission will review its history and its reception by French politicians, researchers, the medical community, and leading commentators.11 Overall, the most remarkable difference between the French and U.S. experiences lies in the nature of the central conflict to be resolved by the ethics commission. In France, the fundamental debate still appears to be one over the control of science. Specifically, does government have the right and the duty to limit scientific inquiry or practice in the name of inchoate political or cultural values? In the United States this same question is asked. But in general the research community in the United States has long grown accustomed to political control, at least by virtue of funding priorities. Thus, U.S. debates tend more to be about whether a particular application of political control-for example, the ban on the use of fetal tissue-is wise or effective. This in turn relates closely to the political popularity of the goal of the research or moratorium, and thus makes the American commission discussions more responsive to grass-roots political movements. The significance of this observation lies in its implications for the structure and membership of future commissions. In France, where the ongoing struggle is between the technical and political communities, the credibility of a commission's conclusions lies in their persuasiveness within the research community. French physicians, who (unlike their American counterparts) have little financial stake in proffering novel technologies, tend to have interests aligned with the research community, i.e., the ''producers" of new biotechnologies. It is no accident, therefore, that the new director of the French commission is a leading French scientist, or that the commission's "public hearings" consisted of prepared statements by 17 luminaries and prepared questions by a number of leading theologians and intellectuals.12 In the United States, where the debate is somewhat less about limiting the freedom of researchers and somewhat more about limiting the freedom of potential patients (service consumers) or physicians (service retailers), the credibility of commissions lies in their persuasiveness within the lay and medical communities. This in turn would seem to argue for commission leadership that is political rather than technical, and for hearings

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Society's Choices: Social and Ethical Decision Making in Biomedicine that are open to the general public. It also means that a commission's work will be far more subject to the vagaries of the general public's political sensibilities on issues such as abortion or the role of religious teachings in public policy. FETAL TISSUE RESEARCH: THE U.S. EXPERIENCE Fetal research has led to a vaccine for polio, to improved treatments for diseases of both fetus and expectant mother, and now, through transplantation, to prospects for curing Parkinson's disease and juvenile diabetes. Perhaps most important, it has helped develop basic understanding of cell biology, particularly of cancer cells. In the words of R.J. Levine, "Even this incomplete list should serve to demonstrate the enormous value of fetal research."13 And sensitivity to the potential ethical problems raised by the use of fetal tissue prompted the creation of a national panel of medical, ethical, and legal experts as early as December 1986, meeting at Case Western Reserve University in Cleveland to quietly endorse such research as "ethically acceptable."14 But the American experience with reviewing the use of fetal tissue in research and transplantation, while seemingly raising lofty questions of morality, has in fact been mired in far more sticky political problems. Indeed, the effort to ground the process in serious epidemiology discussing cause-and-effect (would permitting research increase the number of abortions?) or philosophical concepts of responsibility (does a good use of data derived from arguably evil procedures make the researcher and beneficiary complicit in the evil act?) was drowned out by the admittedly symbolic issue at hand: whether allowing anything of any value15 to emerge from the abortion decision would destigmatize the procedure to the point of weakening political opposition to it. 16 The Uniform Anatomical Gift Act, passed by all 50 states and the District of Columbia between 1969 and 1973, authorizes donation of "all or part of the body" of an aborted fetus for research or therapeutic purposes. But individual states also can regulate or restrict fetal tissue donation, and the 25 state laws on the subject contain vague and sometimes conflicting provisions. Some of the state laws do not even define what a fetus is or what constitutes fetal research. For example, Arizona bans the use of "any human fetus or embryo" in nontherapeutic research. California bans nontherapeutic research upon the "product of conception," Illinois upon a "fetus," Oklahoma and Pennsylvania upon the "unborn child.17 The all inclusive Missouri law, by contrast, covers "the offspring of human beings from the moment of conception until birth at every state of its biological development, including the human concepts, zygote, morula, blastocyst, embryo and fetus." Many of the laws regulating research on aborted fe-

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Society's Choices: Social and Ethical Decision Making in Biomedicine tuses "seem designed to preclude any medical or social benefits of elective abortion," according to reproductive rights specialist Lori Andrews.18 The first major flap at the federal level over fetal research occurred in the 1970s, when reports surfaced of experiments on live aborted fetuses. The image was so distasteful that it helped Congress to pass the National Research Act in 1974,19 creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (National Commission). Meanwhile, a moratorium was imposed halting all research "on a living human fetus, before or after the induced abortion of such fetus, unless such research is done for the purposes of assuring the survival of such fetus." The act also set up a national commission charged with recommending the circumstances, if any, under which the moratorium should be lifted. In 1975, the National Commission issued its report Research on the Fetus,20 in which it outlined proposed limitations on research with dead fetuses and fetal tissue. These proposals, eventually adopted and codified2l by the Department of Health, Education, and Welfare, followed the National Commission's unanimous proposal that "use of the dead fetus, fetal tissue, and fetal material for research purposes be permitted, consistent with local law, the Uniform Anatomical Gift Act and commonly held convictions about respect for the dead."22 By the mid-1980s, promising research in Sweden and Mexico on the use of fetal tissue transplantation for the treatment of Parkinson's disease made this form of research far more visible than it had been. By the same time, anti-abortion forces had expanded the scope of their efforts to include a number of collateral issues, including the development of new abortifacients; use of alcohol and other drugs among pregnant women; regulation of in vitro fertilization; and mandatory contraception for female child abusers.23 In late 1987, consistent with its promise to reward the antiabortion movement for its help in two successive elections, President Reagan, through the auspices of his White House staffer Gary Bauer, made it clear that fetal tissue research would no longer be financed without some further review. On March 22, 1988, the Reagan administration rejected a request from the National Institutes of Health for permission to transplant fetal tissue into the brain of a patient with severe Parkinson's disease, and imposed a moratorium on all research using tissue from aborted fetuses.24 The protocol, which had already been passed for scientific value by NIH, was held up while NIH director Jim Wyngaarden sought guidance from assistant secretary of health Robert Windom. The guidance he received consisted of a letter from Windom, directing Wyngaarden to convene an outside advisory panel to look at the ethics of fetal tissue transplantation, and listing specific questions to be answered. 25

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Society's Choices: Social and Ethical Decision Making in Biomedicine That panel was appointed in 1988, and was known as the Human Fetal Tissue Transplantation Research Panel (HFTTR). An ad hoc selection committee deliberately chose a politically acceptable chair, Arlin Adams. Known as a conservative opponent of abortion, Adams nonetheless took seriously the appearance of impartiality flowing from his position as a federal judge. A prominent physician (Kenneth Ryan), ethicist (Leroy Walters), and abortion opponent (James Bopp) were added to the roster to round out appearances and leadership, and an additional 17 panel members were selected by NIH's internal ad hoc committee. 26 On September 9, 1988, during the week before the NIH panel opened its hearing, a draft executive order from President Reagan banning all fetal tissue research was disclosed. The order appeared to have been drafted and circulated by White House domestic policy adviser Gary Bauer. According to a published news account, "Some committee members expressed dismay that the White House would draft such an order before the NIH advisory panel had a chance to hear a word of testimony, but spokesman Marlin Fitzwater said the draft did not represent the official White House position."27 From the beginning, then, the efforts of this national panel to provide dispassionate advice leading to a consensus on research regulations had a bit of a farcical quality; political considerations seemed clearly to dominate ethical concerns. Nonethless, on September 14-16, 1988, the NIH special advisory panel held three days of hearings on fetal tissue research. While most speakers urged the panel to consider the scientific value and ethical acceptability of fetal tissue research apart from controversy over abortion, the abortion issue quickly dominated the debate. At the conclusion of the hearings, the panel voted 19 to 0, with two abstentions, that use of tissue from legally aborted fetuses for medical research and treatment is "acceptable." Chairman Adams called that vote "tentative," but said it meant that "we are willing to go ahead with the use of fetal tissue in medical research if we could take a series of steps to insure that the abortion procedure is sufficiently insulated from the medical research that comes afterward."28 The vote was preliminary and unbinding, however, and the panel carefully took no stand on the morality of abortion. Indeed, Kenneth Ryan, the NIH panel's scientific chairman, said the committee would try to ''steer a conciliatory, practical approach to policy" on fetal tissue research, despite the volatility of the abortion issue.29 A month later the NIH advisory committee met again to continue its work on its advisory report to NIH officials. The panel attempted, within severe time constraints and the subject matter limitations of Windom's charge to the committee, to arrive at a consensus concerning the principles and values that ought to guide fetal research. Those included (1) the moral status of the fetus and of abortion; (2) the possibility that deriving

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Society's Choices: Social and Ethical Decision Making in Biomedicine good from abortion is an example of complicity in evil; (3) the possibility that deriving good from abortion would increase the number of abortions (i.e., the level of evil in the world); and (4) the possibility that the decision to abort deprived a woman of the usual moral authority a parent has over the disposition of a child's remains. The attack on fetal research was grounded partly on the idea of complicity: "Investigators, who do not themselves perform the abortions, were portrayed as accomplices whose work creates the impression that the 'abortion industry' is legitimate."30 It also relied on the incorrect belief that, contrary to evidence from countries where such research is permitted, a woman who for moral reasons is ambivalent about having an abortion might decide to proceed if she is reassured that some good might come of it-for example, that a Parkinson's-disease patient might receive therapy. Worse, a woman might choose to get pregnant merely to produce research material; perhaps she could sell her fetus or give it to a relative who has diabetes. Fetal research was also denounced as being unethical because the subject cannot give informed consent and no one appears to have the standing to give proxy consent-surely a mother who has chosen to end the life of her "unborn child" cannot be relied on to guard its interests."31 Underlying all these discussions, but particularly those concerning the moral status of the fetus, was a tension between the value of fetal life and the value of adult life that might be helped by the use of the tissue. In other words, the conflict was not one between science for the sake of science versus the potentially immoral effects of yielding to the technological imperative. Rather, it was a more pragmatic balancing of the benefits of applied science for one group of people (Parkinson's patients) against the disadvantages to another group (fetuses and their defenders). And as neither group of persons could claim moral primacy based on biology alone,32 the fetuses won moral primacy based upon their symbolic value and the political efforts of the well-organized anti-abortion movement. In the end, therefore, despite efforts to reach a consensus by accepting for the sake of argument the evil nature of abortion and then working forward to whether this prohibits some good from emerging from its practice, the panel failed. Dissenting opinions were written, and the 18-3 vote of the panel to lift the moratorium was ignored. During the subsequent Bush administration, secretary of health and human services Louis Sullivan rejected the panel's report on the dubious excuse that he was not convinced by the epidemiological evidence that abortion frequency would remain unchanged should fetal tissue donation be permitted. But the fundamental dynamic at play concerned appearances, not fine analytical reasoning. As suggested by panel member Rabbi David Bleich, "federal funding conveys an unintended message of moral approval for every aspect of the research program."33 In the end the issue here was not

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Society's Choices: Social and Ethical Decision Making in Biomedicine primarily one of whether fetal tissue transplantation was a potentially valuable therapy for living adults, or whether restrictions on this research via federal funding moratoria constituted an untoward invasion into the pursuit of scientific reason. Rather, the issue was one of pure politics and appearances. To the extent that fetal tissue research offended the sensibilities of abortion opponents, it could legitimately be discouraged. Efforts by panel members such as John Robertson or Leroy Walters to analyze why social legitimation of abortion does not follow from use of fetal tissue (just as social legitimation of homicide or drunk driving does not follow from use of cadaveric tissue) were futile because they were directed at the merits rather than the emotional content of the social legitimation argument. By November 1989, newspapers were reporting that the scientific community had reached an impasse with the administration and its willingness to let political concerns over the abortion issue block promising research and promising therapies. A sample: Frustration has been building among medical researchers for the last year, according to several interviewed this week. They said the seemingly irreconcilable split over abortion has created a climate in which one bioethical issue after another has become politically too hot to handle-or even discuss. Concern rose to a new pitch last week when the secretary of health and human services, Louis W. Sullivan, extended a ban on research using transplants of tissue from aborted fetuses. Sullivan ignored the advice of a special federal panel that had concluded that the research could help millions of afflicted people and would not increase the number of abortions. "In effect, this is a suppression of legitimate science at the federal level," said John Fletcher, a bioethicist at the University of Virginia. "When political considerations dominate science, it concerns me very, very deeply."34 The failure of the federal commission to reach an effective consensus led to a series of private efforts by medical societies, whose members specialized in therapies hampered by the absence of good fetal research, to rally public support through self-regulation of fetal tissue research. For example, a report titled "Medical Applications of Fetal Tissue Transplants" was issued by the American Medical Association in June 1989, calling for the use of fetal tissue grafts. Under guidelines approved by the AMA panel, the use of fetal tissue for transplantation was considered ethically permissible when it is not provided for profit and when the recipient is not designated by the donor. A woman's decision to have an abortion should be made before any discussion of the transplantation use of the fetal tissue is initiated, according to the report, and doctors who participate in the abortion should not receive any benefit from the transplantation of the tissue.35

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Society's Choices: Social and Ethical Decision Making in Biomedicine Another effort was led by ACOG and AFS, who created a privately funded organization called the National Advisory Board on Ethics in Reproduction (NABER). Kenneth Ryan, a member of the NABER board and an advocate of developing guidelines said: "Research on fetal tissue and reproductive technologies is going on in this country and will continue with or without Government regulation," said Ryan. "The time is ripe for a private group to shoulder the task of setting standards to insure that such research is ethically and scientifically sound." But Douglas Johnson, legislative director of the National Right to Life Committee, which opposes legalized abortion, objected to the new, private board, saying: "I see this in part as an attempt to undermine the policies that the Federal Government has established. I also oppose it to the extent that it will be a tiny elite clique deciding fundamental ethical issues, such as when we can treat human beings like laboratory animals.'' Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, supported the privatization of ethical review of fetal tissue transplantation, noting: "There is a vacuum on public policy in these areas. We are moving by conscious inaction. There is abortion gridlock, and in the Government there is also just plain fear of any issue pertaining to reproduction."36 The federal government, faced with this revolt by patient-consumers and their provider-advocates, stepped in again in the form of congressional action, when legislation was introduced in 1992 to overturn the fetal tissue ban as part of an overall NIH funding bill. The bill passed with substantial majorities in both houses of Congress, prompting a wave of public advertisements37 and public statements38 on both sides of the issue, directed at President Bush and his veto power. In June 1992, however, as expected, President Bush vetoed legislation that would have overturned a federal ban on fetal tissue research, saying that such work is "inconsistent with our nation's deeply held beliefs" and that many Americans find it "morally repugnant."39 Bush, who made it clear early in the bill's history that he would never support research that involved using tissue obtained from elective abortions, said he found the legislation "unacceptable to me on almost every ground: ethical, fiscal, administrative, philosophical and legal."40 The House immediately scheduled an override vote, but supporters of the legislation could not muster the two-thirds vote needed.41 Thus the ban remained in place until its removal by executive order upon Bill Clinton's ascension to the White House in January 1993. Interestingly enough, the U.S. experience is not generally representative of North American experience. Canadian concerns about fetal tissue research centered not on its effect on the frequency or morality of abortion, but rather on commercialization of this and other forms of organ donation.

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Society's Choices: Social and Ethical Decision Making in Biomedicine The Royal Commission on New Reproductive Technologies was established by the Canadian federal government in October 1989. Its mandate directs it to examine medical and scientific developments around new reproductive technologies, in particular their social, ethical, health, research, legal, and economic implications, and their impact on women, children, and society as a whole. The Commission has established a multifaceted Consultations program to enable it to hear the views and opinions of people from all sectors of Canadian society. It has also set in motion a comprehensive and multidisciplinary program of research and evaluation to provide rigorous, credible, and timely information about, and critical analysis of, the issues surrounding new reproductive technologies. In response to requests from academics and policymakers for raw data and underlying analysis, the Royal Commission began releasing copies of its working papers to the public. The paper on fetal research, entitled "The Use of Human Embryos and Fetal Tissues: A Research Architecture,"42 examines the decades-long use of human fetal tissue by pharmaceutical and biotechnology companies to develop vaccines and to test the efficacy of new pharmaceutical products. It notes that it has more recently been a critical tool in viral research on infections such as human influenza, hepatitis B, measles, and human immunodeficiency virus (HIV). The paper concludes that, while the scope of application for human embryo and fetal tissue research is increasing, there is a lack of public policy to address the social, ethical, legal, and regulatory issues their use raises. The French Experience: The Comité Consultatif National d'Éthique The CCNE, the first national bioethics commission in Europe, was created by executive decree in February of 1983. At the request of Jacques Chirac, prime minister, the CCNE's reflections were developed into a voluminous report by Guy Braibant. This study, entitled "Sciences de la vie: de l'éthique au droit" ("Life Sciences: From Ethics to Law"), was submitted to the government and to the public in early 1988, and listed more than 150 specific measures that could be taken by executive or parliamentary action to bring French law into conformity with the advisory opinions of the CCNE.43 The Braibant report is notable for its attempt to propose an enormous number of legal changes consistent with a few thematic conclusions of the CCNE. These included the indivisibility of body and soul, and the resulting importance of bodily integrity and the noncommercialization of body parts,44 principles endorsed by the Ministry of Justice: It's the inalienability of the body that makes it wrong both to touch my body without my consent or to make my body the object of patrimony or commercialization: the body is not an element that can be regarded as the object of property rights, either of others or of one's self.45

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Society's Choices: Social and Ethical Decision Making in Biomedicine A later prime minister, Michel Rocard, extended this work by requesting that the Braibant report be transformed into discrete pieces of draft legislation. Thus, beginning in early 1989, a drafting effort was led by Claude Evin, health minister, and Pierre Arpaillage, minister of justice. Rocard hoped to present amendments to the civil code and the public health code by the spring of that year, in time to coincide with the bicentennial celebrations. But that was not to be: Michel Rocard's preferred schedule was ignored from the beginning, and thus began the hesitation waltz that would last for three long years. Voices quickly were raised to protest the Braibant proposals, in more or less radical fashion and to denounce all precipitous action.... The need for a bioethics law fed an intense cacophony in the government at this time. By the end of 1989, . . . the Minster of research was saying that a legislative initiative was no longer at all desirable. Claude Evin . . . was taking the position that the draft law project should be reduced in scope, while Pierre Arpaillage . . . was calling for a rapid parliamentary review of the entire text.46 All eyes looked to Mitterrand to unblock the legislative path toward a bioethics law. After some two years of delay he appointed the "maitre des requêtes" Noelle Lenoir to the Council of State,47 to oversee a report by the parliamentary office of technology and science assessment (the Serusclat report) and a parliamentary advisory report (the Bioulac report). Further movement would await the efforts of deputy minister of justice Michel Sapin, who called in September 1991 for a declaration of the "rights of the biological being" and an embodiment in the civil code of a legally defined status for the human body. By March 1992, Sapin had persuaded the Council of Ministers to adopt three draft law projects, which then were sent to the National Assembly, with health minister Kouchner as their proponent.48 Thus, by March 1992, the French cabinet had adopted a biomedical code of ethics to prevent the alteration of genes, a trade in organs, surrogate motherhood, or the use of artificial insemination except for women who are sterile or whose husbands have genetic diseases. 49 Based upon the decade-long efforts of the CCNE, the code would ban manipulation of genes except for specific therapeutic purposes, and limit the use of genetic identification techniques to establish a child's parentage. It would also outlaw payment for donated blood or organs, and keep all donors anonymous. It would ban the use of any part of a person's body without prior consent. The French code proposal followed years of heated debate over whether to limit innovative scientific techniques. Critics feared such innovations could lead to nightmarish experiments; others argued that scientific progress must not be impeded. It took eight months for the cabinet's adoption of the code to be accepted by the National Assembly.50 Despite

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Society's Choices: Social and Ethical Decision Making in Biomedicine much more modest in his vision of social control over science. As mentioned above, his is one of the voices that called for a preamble to the bioethics law that would express the importance of scientific progress as a fundamental principle of French society. Further, and perhaps more subtly, Changeux does not share a rhetoric of man as a "social" and "natural" being, or as an animal with a spirit and a body. Instead, Changeux's lengthy career in neurobiology has made him a leading exponent of biological reductionism, in which all behavior and thought can ultimately be explained in terms of molecular biology and gross neural structure. This in turn has led to speculation that his views on the "status" of the human body will be profoundly shaped by the presence or absence of consciousness, laying the groundwork for liberal law on abortion, euthanasia, and embryo or fetal research. Under the leadership of Jean Bernard, the CCNE approached these questions with an underlying assumption that the spirit is indivisible from, and in some fashion sanctifies, the body.73 Changeux, on the other hand, rejects the metaphysical out of hand: Any scientist who refuses to succumb to the comfortable mental split of the believer and who wants to remain internally consistent and to endeavor to reject all reference to the metaphysical must search for the natural bases of ethics. [This is nothing more than a rediscovery of the underlying premises of the French Revolution] with the considerable benefits we can procure from recent advances in neuroscience, cognitive science, and social anthropology. The most important function of science is to permanently chase away all irrationality in order to obtain objective knowledge.74 Overall, then, the French experience with its bioethics commission has been one of abstract argumentation and a political accommodation among elite segments of society. Although the subject of innumerable newspaper articles, bioethics regulation remains a topic largely divorced from the general population. Conclusion The United States is a fundamentally more decentralized, and religiously observant country than France. Its conflicts are different. Therefore, the structure and mission of a successful bioethics commission in the United States must be different. The French commission has a subtle but rather well-contained mission: to balance in a rather thematic way the competing principles of free scientific investigation and protection of the public order and morale. This is a classic debate in France, dating back most notably to the French Revolution. And the events of 1789 have for 200 years stood for the victory

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Society's Choices: Social and Ethical Decision Making in Biomedicine of reason over superstition, secularism over clericalism, and knowledge over ignorance. Thus, the main task left to the government today is to work out an accommodation between necessary public health regulation and the chafed sensibilities of the research and medical communities. The discussion between the two groups, although heavily covered in the daily newspapers, are rather abstract and largely distant from the day-to-day concerns of the general population. By contrast, bioethics in the United States has devolved largely into a debate on the autonomy of service consumers and providers. Thus it pits government against the individual, and opens classic debates about the degree to which moral teachings ought to be imposed upon the population in the name of good order and morale. This in turn generates a rights-based discussion, in which competing interests of competing groups of persons are pragmatically weighed against one another, subject to occasional limits based on principles embedded in the Constitution and the Bill of Rights. Such a discussion, which is inherently political, is an invitation to grass-roots politicking. Any bioethics commission created for the U.S. government will have to be responsive to this political reality. NOTES 1.   "The Wearisome Hesitation Waltz." The title "La Pénible Valse Hésitation" is taken from an article by Jean-Yves Nau in the French daily, Le Monde. 2.   "Évoquons aussi la fameuse formule attribuée au professeur Jean Bernard, 'Tout ce qui n'est pas scientifique n'est pas éthique.'" Cette formule faussement rationnelle et vraiment idéologique renverse la charge de la prévue en exigeant d'une position éthique qu'elle se soumette d'abord aux refles de la logique scientifique. La loi bioéthique retrouve le chemin interrompu de l'humanisme. L'homme y est conçu comme un être moral dont le libre jugement doit séparer le bien du mal, en particulier face aux nouveaux horizons scientifiques qui s'ouvrent devant lui. La science, désormais encadrée par la loi, retrograde la second place, derrière le primat moral. C'est l'homme qui produit la science et en choisit les seuls fruits positifs; ce n'est pas la science qui produit l'homme. On comprend aujourd'hui que l'ignorance n'est pas la seule ennemie de l'homme et que la science doit se soumettre une morale supérieure pour demeurer son alliée. Oppenheimer devant l'atome avait déja rencontré ce débat. Les découvertes de la biologie génétique porteuses de bénéfices mais aussi de risques exceptionnels pour l'humanité conduisent aux mêmes dilemmes.... Notre société a autant besoin de philosophes que de scientifiques." Stasse, F-X, "Santé, éthique, et argent," Le Monde, 5 February 1993. 3.   Nau, J-Y, "L'éclosion internationale de la bioéthique," Le Monde, 20 May 1992. 4.   The four principles are "le bénévolat, la gratuité, l'anonymat et le volontariat" (benevolence, non-commercialization, anonymity, and autonomy), and are equally applicable to reproductive technologies, AIDS screening, or organ donation. See Nau, J-Y, "La Pénible Valse Hésitation," Le Monde, 19 March 1993. 5.   "Tout ce qui n'est pas scientifique n'est pas éthique." Stasse, F-X, "Santé, éthique, et argent" Le Monde, 5 February 1993. 6.   The CCNE consists of members appointed from a variety of disciplines. They include: five members representing a "family of philosophical and theological thought," appointed by

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Society's Choices: Social and Ethical Decision Making in Biomedicine     the President; fifteen others appointed by virtue of their "interest and competency" in bioethics, nominated in varying numbers by several ministries (health, social affairs, education family, industry, justice, research, labor); and one member each appointed by the Prime Minister (who may be of a different party than the President), the President of the National Assembly, the President of the Senate, the President of the Cours de Cassation, and the Vice-President of the Council of State. An additional fifteen members are appointed by various organizations within the medical and research communities. Members are to serve two year terms, with half the membership changing every second year. Nau, J-Y, "Dans l'attente du renouvellement de ses effectifs et de son président: Le Comité national d'éthique est au bord de l'asphyxie," Le Monde, 13 May 1992. 7.   "Nous avons voulu fixer les règles minimales d'une société tolérante, chacun étant libre de s'imposer des règles plus strictes en fonction de ses convictions et de ne pas recourir aux possibilités offertes par la loi. Vouloir imposer la collectivité une morale religieuse qui, par définition, ne s'applique qu' l'individu, non seulement serait une erreur vis-à-vis de nos concitoyens, mais outrepasserait gravement le rôle du Parlement. .. I faut éviter tout prix l'ordre moral, qui, impose par les uns, dirait aux autres ce qui est bien et ce qui est mal. . .." Paris, G., "A l'Assemblée nationale: Les députés souhaitent que les textes sur la bio-éthique soient adoptés avant la fin de la législature," Le Monde, 23 November 1992. 8.   Paris, G., "A l'Assemblee nationale: Les députés souhaitent que les textes sur la bio-éthique soient adoptés avant la fin de la législature," Le Monde, 23 November 1992. 9.   The IOM requested an international comparative study on fetal tissue panels. This paper will be more an international comparison than a study of fetal tissue panels, because no other country seems to have devoted as much time to the subject as the United States. 10.   The CCNE originally endorsed a moratorium on embryo research and the use of fetal tissue, but lifted the moratorium within a year. 11.   As per request by the committee, this paper will be very brief, and will be based upon publicly available sources only. Thus, the CCNE review will be based upon its own documents and upon a review of over 137 articles in the French newspaper Le Monde. 12.   Nau, J-Y, "L'audition publique de dix-sept 'grands témoins': Une loi-cadre pourrait être proposée pour la bioéthique," Le Monde, 27 March 1991. 13.   Levine, R.J., "Fetal research: the underlying issue; Human fetal research," Scientific American 261(2):112 (August 1989). 14.   Timothy J. McNulty, "Murky Moral Issues Surround Fetal Research," Chicago Tribune, July 27, 1987, at Pg. 1. 15.   Other than a woman's own satisfaction at ending her pregnancy. 16.   For a more complete review of the internal squabbles of the Fetal Tissue Panel, see Childress, J.F., "Deliberations of the Human Fetal Tissue Transplantation Research Panel," in Institute of Medicine (K. Hanna, ed.), Biomedical Politics (National Academy Press, 1991). For a review of congressional efforts to overturn the ban, see Vawter, D.E., "Fetal Tissue Transplantation Policy in the United States," 12(1) Politics and the Life Sciences 79:85 (February 1993). President Clinton lifted the moratorium shortly after taking office. 17.   U.S. Congress, Office of Technology Assessment, Infertility: Medical and Social Choices (OTA-BA-358) (U.S. G.P.O.; Washington, D.C.: 1988). As of 1988, restrictions on fetal research existed in 25 states. Id. 18.   Don Colburn, "The Fetus, Medicine, Law, and Morality," Washington Post, October 18, 1988, at Health Section, Pg. 16. 19.   P.L. 93-348; 88 stat. 348. 20.   National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, "Research on the Fetus: Report and Recommendations" (DHEW-OS-76-128) (U.S. G.P.O., Washington, D.C.: 1975). 21.   See 45 CFR Part 46, Subpart B.

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Society's Choices: Social and Ethical Decision Making in Biomedicine 22.   On the other hand, the proposed regulations also provided stringent safeguards for research on living fetuses, such as requiring that such research be done only when therapeutic for the fetus or when it posed minimal risk to the fetus and the information to be gained was compellingly important and impossible to otherwise obtain. These proposals were subsequently adopted as regulations. See generally 45 C.F.R. Part 46. The regulations provided for a federal Ethics Advisory Board (EAB) that could issue waivers from that restrictive policy on a case-by-case basis, but the EAB granted only one waiver before it was dissolved and has never been reappointed. 23.   Charo, R.A., ''Mandatory Contraception in the U.S.," The Lancet 1992; 339:1104-1105 (5/2/92); Charo, R.A., "A Political History of RU-486," in Institute of Medicine (K. Hanna, ed.) Biomedical Politics (National Academy Press, 1991). 24.   "Note that this moratorium deals only with the use of tissues and cells of dead fetuses. The 1974 commission had considered such use to be relatively unproblematic; its central concerns were, rather, over the possibility that a living fetus might be harmed or wronged to serve research interests. Although the morality of abortion has always figured in the debate over the ethical permissibility of fetal research, it is notable that those who oppose the transplantation of fetal tissues seem to consider it the only issue." Levine, R.J., "Fetal research: the underlying issue; human fetal research," Scientific American 261 (2):112 (August 1989). 25.   Letter from Robert Windom to James Wyngaarden, 22 March 1988. 26.   1988 HFTTR Panel: Arlin Adams (Chair), Schnader, Harrison, Segal & Lewis, Philadelphia; Kenneth Ryan (Chair, Scientific Issues), Brigham and Women's Hospital, Boston; LeRoy Walters (Chair, Ethical and legal issues), Kennedy Institute of Ethics, Washington D.C.; David Bleich, Cardozo Law School, New York City; James Bopp, Brames, McCormick, Bopp & Abel, Terre Haute, IN;James Burtchaell, University of Notre Dame, Notre Dame, IN; Robert Cefalo, University of North Carolina School of Medicine, Chapel Hill;James Childress, University of Virginia, Charlottesville; K. Danner Clauser, Pennsylvania State University, Hershey; Dale Cowan, Marymount Hospital, Garfield Heights, OH; Jane Delgado, National Coalition of Hispanic and Human Services Organizations, Washington, DC; Bernadine Healy, Cleveland Clinic Foundation, Cleveland; Dorothy Height, National Council of Negro Women, Alexandria, VA; Barry Hoffer, University of Colorado Department of Pharmacy, Denver; Patricia King, Georgetown University Law Center, Washington, DC; Paul Lacy, Washington University School of Medicine, St. Louis; Joseph Martin, Massachusetts General Hospital, Boston; Aron Moscona, University of Chicago Department of Molecular Biology, Chicago; John Robertson, University of Texas Law School, Austin; Daniel Robinson, Georgetown University Department of Psychology, Washington, DC; Charles Sweezey, Union Theological Seminary, Richmond, VA. 27.   Don Colburn, "The Fetus, Medicine, Law, and Morality," Washington Post, October 18, 1988, at Health Section, Pg. 16. 28.   Don Colburn, "The Fetus, Medicine, Law, and Morality," Washington Post, October 18, 1988, at Health Section, Pg. 16. 29.   Don Colburn, "The Fetus, Medicine, Law, and Morality," Washington Post, October 18, 1988, at Health Section, Pg. 16. The article notes that: "The issue of fetal research has generated a range of opinions that sometimes cut across traditional political lines. A group called The Value of Life Committee last week called on President Reagan to ban federally funded research using tissue from aborted fetus. Signers of the letter to Reagan included not only anti-abortion activist Bernard Nathanson but also libertarian Village Voice columnist Nat Hentoff and Pulitzer Prize-winning novelist Walker Percy, a physician. On the other hand, syndicated columnist James J. Kilpatrick, whose credentials as a conservative are unimpeachable, endorsed fetal tissue research in a recent column because 'I believe the living may benefit from the dead' and because it 'might permit at least the rationalization that a fetus has not died in vain.'"

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Society's Choices: Social and Ethical Decision Making in Biomedicine 30.   Levine, R.J., "Fetal research: the underlying issue; Human fetal research," Scientific American 261(2):112 (August 1989). 31.   "Note that this moratorium deals only with the use of tissues and cells of dead fetuses. The 1974 commission had considered such use to be relatively unproblematic; its central concerns were, rather, over the possibility that a living fetus might be harmed or wronged to serve research interests. Although the morality of abortion has always figured in the debate over the ethical permissibility of fetal research, it is notable that those who oppose the transplantation of fetal tissues seem to consider it the only issue." 32.   That argument, i.e., that live-born persons matter more than fetuses, circled directly back to the underlying conflict on abortion. Those wishing to overturn the ban tried very hard to make arguments that were not based on rehashing the abortion debate directly. 33.   Bleich, D.J., "Dissenting Statement, Fetal Tissue Research and Public Policy," pp. 39- 43, in vol. 1 of the Report of the Fetal Tissue Transplantation Research Panel (Bethesda, MD; DHHS 1988). 34.   Richard Saltus, "Research, ethical issues stalled by abortion debate," The Boston Globe, November 10, 1989, Friday, City Edition, Pg. 1. 35.   G. Croucher, "AMA issues fetal tissue, life support guidelines," U.P.I. June 21, 1989, Wednesday, BC cycle. 36.   Phillip Hilts, "Groups Set Up Panel On Use of Fetal Tissue," New York Times, January 8, 1991, Tuesday, Section C; Pg. 3; Col. 1. 37.   For example, the following is the text of an advertisement that ran in the May 12, 1992 edition of the congressional newspaper "Roll Call": Does fetal tissue research have anything to do with abortion? Ask NARAL: The National Abortion Rights Action League (NARAL) intends to score H.R. 2507, a bill to provide taxpayer funding of abortion-dependent fetal research, in their annual congressional roll call scorecard. Ask Ted Kennedy: On April 5, 1992, Ted Kennedy told a cheering pro-abortion rally on Capitol Hill that Senate passage of H.R. 2507 proved "your message is getting through, in a very important and significant way. Make no doubt about it." Ask Laurence Tribe: Harvard Law Professor Laurence Tribe testified that medical demand for fetal tissue gives Congress constitutional authority to pass the so-called "Freedom of Choice Act" to ensure a nationwide policy of abortion on demand. Abortion advocates agree: H.R. 2507 has everything to do with abortion. - A congressional vote to fund abortion-dependent fetal tissue research would give the abortion industry something it's never been able to achieve on its own: respectability. - Such a vote will make the abortion industry look good, but make Congress look awfully bad. Especially when Congress can use these funds for other, equally promising, research methods that do not require an unprecedented alliance with the abortion industry. - 63 percent of Americans oppose spending tax dollars for transplant research that uses tissue from induced abortions January 1992 Wirthlin poll). - Americans want limits to abortion on demand. So why does Congress think now is the time to begin collaborating with the very industry that performs and profits from it? Why should Congress give the abortion industry a good name and taxpayer dollars? Vote No on H.R. 2507! The Committee on Research Ethics; National Right to Life Committee; Southern Baptist Christian Life Commission; Christian Coalition; Doctors for Life; American Association of Pro-Life OB/Gyns; National Association of Pro-Life Nurses; United States Catholic Conference; American Association of Pro-Life Pediatricians; American Academy of Medical Ethics;

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Society's Choices: Social and Ethical Decision Making in Biomedicine     Black Americans for Life; Pharmacists for Life; Catholic Women's Institute; Christian Action Council; Knights of Columbus; American Life League; National Conference of Catholic Women; Ad Hoc Committee in Defense of Life; University Faculty for Life; Value of Life Committee; Life Issues Institute; Concerned Women for America; National Association of Evangelicals; Capitol Hill Women for Life; Women Exploited by Abortion;Jewish Anti-Abortion League; Women for Faith and Family; Women for Women; Fortress International; Family Research Council; Professional Women's Network; Traditional Values Coalition; American Victims of Abortion; Presbyterians for Life; Scientists for Life; Feminists for Life; Eagle Forum; Jews for Morality. 38.   For example, here is the text of statement by American Jewish Congress, May 19, 1988, in support of H.R. 2507. "It is truly unfortunate that fetal tissue transplantation research, which holds great promise for treating a number of devastating diseases, has become a battlefield in the ongoing national debate over abortion. After extensive study by a distinguished Task Force on Bio- Ethics, AJ Congress has reached the conclusion that women should be permitted to donate fetal remains so that they may be used for research and treatment that could preserve and extend human life. "Opponents of such research argue that elective abortions will increase if transplantation of fetal tissue becomes successful, either because of financial incentives or because some women will choose to abort in order to save the lives of others. The National Institutes of Health Reauthorization, however, contains stringent safeguards that would both eliminate any financial incentive to encourage abortions and which would insulate a woman's decision to abort from her consent to the use of fetal remains. And it is highly unlikely that even ambivalent women would be influenced in such a difficult decision by a desire to donate the fetal remains to an anonymous recipient. "The current moratorium on fetal tissue transplant research wholly ignores the suffering of millions of Americans who endure the diseases which such research could ameliorate. We therefore urge that the current ban on federal funding of fetal tissue transplantation research be rescinded." 39.   Marlene Cimons, "Bush vetoes repeal of fetal tissue research ban," Los Angeles Times, June 24, 1992, Part A; Pg. 6; Col. 2. 40.   Marlene Cimons, "Bush vetoes repeal of fetal tissue research ban," Los Angeles Times, June 24, 1992, Part A; Pg. 6; Col. 2. 41.   When the chamber approved the bill, the vote was 260 to 148. In the Senate, 85 members voted for the legislation. 42.   Copies of this publication, as well as information about the Royal Commission on New Reproductive Technologies, are available by calling the Commission at 1-800-668-7060. 43.   Nau, J-Y, "L'Assemblee nationale examine trois projets de loi sur la bioéthique: Les garde-fous de la science," Le Monde, 20 November 1992. 44.   Nau, J-Y, "L'Assemblee nationale examine trois projets de loi sur la bioéthique: Les garde-fous de la science," Le Monde, 20 November 1992. 45.   "C'est la fois l'indisponibilité du corps Bianco, ministre des affaires sociales et de l'intégration, Hubert Curien, ministre de la recherche et de la technologie, et Michel Sapin, ministre délégué la justice. Dans un entretien au Monde, ce dernier précise les orientations choisies par le gouvernement. . . . statut du corps humain. Il devra correspondre un certain nombre de grands principes. Lesquels? C'est la fois l'indisponibilité du corps on ne peut pas toucher mon corps sans mon consentement et l on ne peut pas toucher mon corps sans mon consentement et l non-patrimonialité ou non-commercialité: le corps n'est pas un élément qui peut faire l'objet d'une propriété, ni des autres ni de soi-même." Statement by Michel Sapin, Deputy

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Society's Choices: Social and Ethical Decision Making in Biomedicine     Minister of Justice, in Nau,J-Y, Nouchi, F., and Michel Sapin. "Un entretien avec M. Michel Sapin" Le Monde, 19 December 1991. 46.   "Le calendrier souhaité par M. Rocard ne put être respecté et on assista au début d'une valse-hésitation qui devait au total durer trois longues années. Rapidement, des voix s'élevèrent pour contester, de manière plus ou moins radicale, le travail réalisé sous l'autorité de M. Braibant et dénoncer toute precipitation. La necessité d'une loi sur la bioéthique alimenta cette époque une intense cacophonie gouvernementale. Fin 1989, M. Hubert Curien, ministre de la recherche, déclarait qu'une initiative legislative n'était nullement souhaitable. M. Claude Evin, ministre de la santé et de la protection sociale, prenait position en faveur d'un "tronçonnage" de l'avant-projet de loi alors que M. Pierre Arpaillange, (ministre de la justice), souhaitait une discussion rapide au Parlement du texte dans sa globalité." Nau, J-Y, ''L'Assemblee nationale examine trois projets de loi sur la bioéthique: Les garde-fous de la science," Le Monde, 20 November 1992. 47.   Director of appeals? 48.   Nau, J-Y, "L'Assemblee nationale examine trois projets de loi sur la bioéthique: Les garde-fous de la science," Le Monde, 20 November 1992. 49.   Reuters Library Report, "French Cabinet Adopts Bio-Ethics Code," 25 March 1992. 50.   Nau, J-Y, "Le dixième anniversaire du Comité national d'éthique; M. Beregovoy souhaite que la future Assemblée adopte au plus vite les projets de loi sur la bioéthique," Le Monde, 10 February 1993. 51.   "Dans un entretien aujournal La Vie François Mitterrand souhaite l'adoption définitive des projets de loi sur la bioéthique" (unauthored column), Le Monde, 15 April 1993. 52.   "Malgré le colloque "De l'éthique au droit," suivi du rapport Braibant, puis du rapport Lenoir, du travail de la commission parlementaire, du travail de la commission senatoriale, de l'adoption en première lecture l'Assemblee nationale au mois de novembre 1992 (ce, une très large majorité), le vote définitif des projets de loi relatifs l'éthique biomédicale, faute de la convocation d'une session extraordinaire du Parlement, n'est pas intervenu." Frydman, R., "Procréation médicalement assistée: De l'éthique au droit: le piège de la politique," Le Monde, 10 February 1993. 53.   "Les débats parlementaires (...) ont démontré que les clivages politiques n'affectaient pas ce type de discussion," affirme-t-il. En outre, puisque "les principes de respect de la personne humaine" ont "vocation universelle," et malgre "des differences de conception ou de sensibilité," M. Mitterrand estime "souhaitable que tous les pays d'Europe se retrouvent autour de valeurs communes." "Dans un entretien au journal La Vie, François Mitterrand souhaite l'adoption définitive des projets de loi sur la bioéthique" (unauthored column), Le Monde, 15 April 1993. 54.   "Pourquoi une telle frilosité? Les explications sont nombreuses: poids d'un lobby qui voit certains milieux de la recherche soutenus en l'espèce par des courants confessionnels violemment opposés ce que la loi traité du statut de l'embryon humain; craintes du pouvoir devant les conséquences imprévisibles que pourrait avoir une démarche legislative dans un domaine où les conceptions philosophiques, morales et religieuses l'emportent presque toujours sur la logique des partis .. ." Nau,J-Y, "Regards sur la Législature Bioéthique: Une penible valse-hésitation," Le Monde, 19 March 1993. 55.   Chombeau, C., "Le retour des "croises" de l'avortement: La multiplication des actions anti-IVG, a l'image d'un mouvement qui se développe aux États-Unis, conduit le gouvernement réagir," Le Monde, 9 January 1991. 56.   "Mme Roudy présidera la commission spéciale sur les projets de bioéthique" (unsigned column), Le Monde, 30 April 1992. 57.   "La procédure par laquelle la loi bioéthique s'est construite fait honneur la démocratie française. II faut, en effet, rappeler qu' l'origine le projet de loi fut combattu par trois forces contradictoires: les conservateurs, pour qui toute loi serait trop libérale; les libéraux pour qui tout débat risquerait de voir remise en cause la loi Veil sur l'interruption volontaire

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Society's Choices: Social and Ethical Decision Making in Biomedicine     de grossesse; certains scientifiques, pour qui toute loi constituerait un obstacle potentiel la poursuite de la recherche biologique et médicale." Stasse, F-X, "Santé, éthique et argent," Le Monde, 5 February 1993. 58.   "Depuis que je suis parlementaire, a expliqué M. Toubon, j'ai rarement eu, autant qu'aujourd'hui, le sentiment la fois exaltant et angoissant d'exercer une responsabilité déterminante l'égard des Français et, en même temps, d'exprimer mes valeurs en accomplissant ce que la vocation du politique a d'essentiel, savoir concilier mon éthique de conviction avec mon éthique de responsabilité." Paris, G., "Le débat sur la bioéthique: Les députés affirment l'inviolabilité et l'indisponibilité du corps humain," Le Monde, 23 November 1993. 59.   To that end, for example, the law projects specified that artificial insemination by donor was to be used only when husbands carried genes for genetic disorders resulting in early childhood death or when husbands were sterile. Other uses, for "convenience" or by a single woman, would be subject to legal punishment. On the other hand, the government proceeded to declare itself in favor of private sperm banks, despite CCNE's opinion to the contrary. CCNE had said that private sperm banks would not only put the non-commercialization of gamete donation at risk, but would be harder to control in the effort to restrict use of the sperm to those with "medical" needs. Nau,J-Y, "En contradiction avec l'avis du Comité national d'éthique: Le ministère de la santé pourrait autoriser les laboratoires privés créer des banques de sperme," Le Monde, 10 August 1992. 60.   "Celui-ci serait limité la prevention ou au traitement d'une affection d' 'une particulière gravité dans l'intérêt de l'enfant naitre.' L'encadrement passerait par les dispositions suivantes: confirmation du diagnostic prénatal par deux praticiens agréés dont l'un au moins doit exercer son activité dans un centre autorisé; création de régistres permettant d'établir les causes des interruptions thérapeutiques de grossesse et de vérifier l'authenticité de l'anomalie déçelee par diagnostic prénatal." Nau, J-Y, "La protection du corps humain et de l'identité génétique," Le Monde, 20 November 1992. 61.   "Dix ans après la création du Comité national d'éthique, la question suivante demeure: le médecin a-t-il l'obligation morale de satisfaire toutes les demandes qui lui sont faites sous prétexte qu'il possède la technique? S'il répond oui, il devient prestataire de services; s'il répond non, il devient le seuljuge. Il y a donc besoin urgent de créer des règles sociales qui ne dépendent pas que de la conception des médecins et correspondent l'idée que la société se fait de l'homme. La médecine est une affaire humaine traitée au cas par cas mais dans un certain cadre qui autorise ce qui est licite et ce qui ne l'est pas (par exemple douze semaines pour le terme maximum de l'IVG)." Frydman, R., "Procréation médicalement assistée: De l'éthique au droit: le piège de la politique," Le Monde, 10 February 1993. 62.   Testart, J., "Sélectionne humaine," Le Monde, 26 November 1992. 63.   Paris, G., "A l'Assemblee nationale: Les députés ont adopté les trois projets de loi sur la bioéthique," Le Monde, 26 November 1993. 64.   Nau, J-Y, "Le dixième anniversaire du Comité national d'éthique: M. Beregovoy souhaite que la future Assemblée adopte au plus vite les projets de loi sur la bioéthique," Le Monde, 10 February 1993. 65.   "La période qui s'ouvre sera interrompue comme l'accoutumée par decoups médiatiques" du genre insemination dejeunes filles vierges, grossesse après la menopause, choix du sexe, qui agiteront les esprits trois ou quatre jours, le temps pour les médias d'espérer augmenter transitoirement leur chiffre de vente ou leur taux d'écoute et de laisser les médecins face des demandes réactivées." Frydman, R., "Procréation médicalement assistée: De l'éthique au droit: le piège de la politique," Le Monde, 10 February 1993. 66.   The fear is not misplaced. By 20 May 1993, the next two controversies had broken-a regional court denial of a widow's request for the frozen embryos created with the gametes

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Society's Choices: Social and Ethical Decision Making in Biomedicine     from her late husband, and the revelation of the destruction of over thirty frozen embryos by an IVF center. "Une législation sur la bioéthique est devenue d'une urgente necessité" (unauthored column), Le Monde, 20 May 1993. 67.   "Le rôle du législateur est d'autant plus délicat que la rapidité du progrès scientifique et l'évolution des moeurs peuvent rendre obsolète une norme legislative qui vient d'être adoptée." Paris, G., "Le débat sur la bioéthique: l'Assemblée nationale M. Kouchner: la loi doit tracer une frontière entre ce qui est possible et ce qui est souhaitable." Le Monde, 21 November 1993. 68.   Nau,J-Y, "Après les déclarations du président de la République sur la bioéthique. Le Comité national d'éthique souhaite élargir son champ d'actovotéé," Le Monde, 17 April 1993. 69.   This organization is roughly equivalent to the A.M.A. in the United States. 70.   Nay,J-Y, "Le Pénible Valse Hésitation," Le Monde, 19 March 1993. 71.   "Au tribunal, les experts ne font pas partie du jury. On peut imaginer un comité d'éthique formé uniquement de représentants de la société civile et religieuse, faisant appel aux avis parfois contradictoires d'experts médicaux. Les chercheurs proposent, la société dispose.... En bref, il faut une éthique pour l'éthique." Dumaz, Y, "Bioéthique: Entre la dérive et le progrès," Le Monde, 26 November 1993. 72.   "Deux principes majeurs en émergent: Tout d'abord, la science n'est pas au-dessus de la loi. Je me place ici sur le plan philosophique, et non sur le plan juridique. La volonté de mettre la science littéralement hors la loi a été exprimée par certains scientifiques, d'abord en s'opposant l'idee même d'une loi bioéthique, puis, cette première bataille perdue, en voulant faire inscrire dans le préambule de la loi le principe de la protection du développement de la science au même titre et au même rang que le principe du respect de la personne. Cette prétention a été exprimée en particulier par M. Jean-Pierre Changeux, ce qui laisse perplexe de la part du nouveau président du Comité national d'éthique. L'homme y est conçu comme un être moral dont le libre jugement doit séparer le bien du mal, en particulier face aux nouveaux horizons scientifiques qui s'ouvrent devant lui. La science, désormais encadrée par la loi, retrograde la seconde place, derrière le primat moral. C'est l'homme qui produit la science et en choisit les seuls fruits positifs; ce n'est pas la science qui produit l'homme." Stasse, F-X, "Santé, éthique, et argent," Le Monde, 5 February 1993. 73.   Nouchi, F., "Succédant au professeur Jean Bernard: Le professeur Jean-Pierre Changeux va présider le Comité national d'éthique," Le Monde, 3 June 1992. 74.   "Tout scientifique qui refuse de succomber [au clivage mental confortable] du croyant, qui souhaite rester cohérent avec lui-même [et s'efforce de rejeter toute référence la métaphysique], devra tenter, dans sa réflexion, de rechercher les bases naturelles de l'éthique. Ce n'est, somme toute, que réactualiser la démarche des Lumières et de la Révolution française, avec le bénéfice considerable que peuvent nous procurer les résultats récents des neurosciences, des sciences cognitives et de l'anthropologie sociale." [En résumé:] "La science a pour vocation première de pourchasser, en permanence, l'irrationnel pour atteindre la connaissance objective." Nouchi, F., "Succédant au professeurJean Bernard: Le professeur Jean-Pierre Changeux va présider le Comité national d'éthique," Le Monde, 3 June 1992

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Society's Choices: Social and Ethical Decision Making in Biomedicine APPENDIX

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