Society's Choices Social and Ethical Decision Making in Biomedicine (1995) / Chapter Skim
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La Penible Valse Hesitation: Fetal Tissue Research Review and the Use of Bioethics Commissions in France and the United States
La Penible Valse Hesitation: Fetal Tissue Research Review and the Use of Bioethics Commissions in France and the United States
Pages 477-502
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From page 477... ...
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.
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From page 478... ...
The long history of central government, whether by monarchy or Parisbased 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)
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From page 479... ...
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.
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From page 480... ...
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.
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From page 481... ...
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.
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From page 482... ...
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.
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From page 483... ...
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."3~ 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.
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From page 484... ...
"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 Tune 1989, calling for the use of fetal tissue grafts.
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From page 485... ...
"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.
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From page 486... ...
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.
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From page 487... ...
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.
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From page 488... ...
In its local incarnation, the movement focused mostly on clinic services, but it did register opposition to the bioethics law project as well, using the public hearings as an occasion on which to attack the underlying law concerning abortion.55 And the National Assembly debates did feature some very forceful antiabortion rhetoric. For example, the appointment of memberYvette Roudy as the chair of the assembly's ad hoc committee to examine the law proposals (Bioulac was its rapporteur)
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From page 489... ...
confirmation by two physicians, at least one of whom is affiliated with an authorized center; and the creation of registries permitting identification of the causes for therapeutic abortions and verification of the accuracy of the prenatal diagnosis....60 In an article reflecting upon the ten years of the CCNE's work, one commentator suggested that the fundamental dilemma posed by new reproductive technologies, and indeed, most new medical technologies, was one of competing claims to power by the medical and political communities: Ten years after the creation of the national bioethics commission, the following question still remains: are physicians morally obligated to satisfy every request for services made to them for the simple reason that the technology exists? If they do so, they become mere retailers of services; if they do not, they become sole judges.
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From page 490... ...
But the most recent political dam was created more by the vagaries of the legislative session than by any substantive concern over the proposed laws themselves. Despite anti-abortion action during the National Assembly debates, for example, the legislation was passed with a large majority reflecting a broad coalition encompassing all but the extreme right and left ends of the political spectrum.63 But the Senate debates were delayed by overlapping committee jurisdictions and the failure to appoint in their stead an ad hoc committee, the decline of Mitterrand's socialist party in the most recent elections, and the loss of Prime Minister Pierre Beregevoy.64 One commentator feared that any further delay in Senate action to translate policy into law would subject France to another series of "media coupe" that awaken patient demands based on outlandish examples of reproductive technology, such as "insemination of young virgins, pregnancy after menopause, or gender selection, which stir up people's fancies for three or four days the time for which the media hopes to temporarily increase its sales or audience share and leave physicians to face the resulting requests for services."65 These controversial uses of reproductive technologies, in turn, could scuttle the effort of years to put into place basic law governing the donation of tissues and cells in a manner that reduces risk of viral transmission.66 And further delay could mean that the legislative proposals would need to be reviewed yet again: The role of the legislator is so sensitive that the rapidity of scientific progress and the evolution of social mores can render obsolete a piece of legislation that has just been passed."67
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From page 491... ...
"The researchers propose, and society disposes," one commentator suggested. "Briefly, there must be ethics for the sake of ethics."7i Others confronted the divide between research and law even more directly, and worried openly that the appointment of scientist Pierre Changeux to replace philosopher {can Bernard as head of the body was inconsistent with the very premise of a bioethics commission: First of all, science is not beyond the reach of the law....
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From page 492... ...
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 lean 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.
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From page 493... ...
, and are equally applicable to reproductive technologies, AIDS screening, or organ donation. See Nau, J-Y, "La Penible Valse Hesitation," Le Monde, 19 March 1993.
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From page 494... ...
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.)
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From page 495... ...
, 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.
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From page 496... ...
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.
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From page 497... ...
"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.
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From page 498... ...
En outre, puisque "les principes de respect de la personne humaine" ont "vocation universelle," et malgre "des differences de conception ou de sensibilite," M Mitterrand estime "souhaitable que tous les pays d'Europe se retrouvent autour de valeurs communes." "Dens un entretien au journal La Vie, Frangois Mitterrand souhaite ['adoption definitive des projets de loi sur la bioethique" (unauthored column)
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From page 499... ...
Beregovoy souhaite que la future Assemblee adopte au plus vite les projets de loi sur la bioethique," Le Monde, 10 February 1993.
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From page 500... ...
Ce n'est, somme toute, que reactualiser la demarche des Lumieres et de la Revolution franc~aise, avec le benefice considerable que peuvent nous procurer les resultats recents des neurosciences, des sciences cognitives et de l'anthropologie sociale." [En resume:] "La science a pour vocation premiere de pourchasser, en permanence, l'irrationnel pour atteindre la connaissance objective." Nouchi, F., "Succedant au professeur {ean Bernard: Le professeur }ean-Pierre Changeux va presider le Comite national d'ethique," Le Monde, 3 ~une 1992
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