In late September 2001, I was asked to serve on the President’s Council on Bioethics. My initial instinct was not to accept, because I was concerned that the Bush Administration would not be interested in considering fully the potential of certain controversial advances in basic biomedical research. Indeed, the administration was already on record as opposing Federal funding for somatic-cell nuclear transplantation and therapeutic cloning. (Therapeutic cloning involves making early-stage preimplantation embryos for use as sources of stem cells, whereas reproductive cloning is the creation of cloned babies through the transfer of cloned embryos into a woman’s uterus.) Two factors, however, tipped the balance in favor of accepting the appointment. First, as the country mourned after the tragedy of September 11, 2001, I felt that I wanted to contribute something. Second, I received strong assurance from the council’s newly appointed chairman Leon Kass (and later from President George W. Bush himself) that the wisdom of a full range of experts was needed. I believed that, especially at this juncture in history, it was important to serve in this potentially critical way.
Unfortunately, my initial misgiving proved to be prescient. In a telephone call from the White House one Friday afternoon last month, I was told that my services were no longer needed. The only explanation I was offered was that “the White House has decided to make some changes in the bioethics council.” Persons who are versed in such matters have since suggested that the prearranged timing of the call was not a coincidence: this Administration commonly takes controversial action on Friday afternoons, when the news is expected to fall into a weekend void.
Three of the 18 members of the original Bioethics Council were full-time biomedical research scientists. Chairman Leon Kass, of the University of Chicago, has, in his published work, questioned modern medical and biomedical science and taken the stance of a “moral philosopher,” often invoking a “wisdom of repugnance” — in other words, rejecting science, such as research involving embryonic stem cells, because it feels wrong to him. I remain convinced that this type of visceral reaction should launch, rather than end, debate. Time and time again, other members of the council, including those who were initially skeptical about the potential of stem-cell research, joined the three scientist-members in urging the chairman to account fully and fairly for the potential of this research to alleviate human suffering.
William May, an impressively thoughtful and learned theologian and medical ethicist, has also left the council, and three new members have been appointed to succeed us. These appointments portend a strong shift in the leanings of the council. Like me, May had differences with Kass on such issues as the moral value of biomedical research and the ramifications of legislating such research. May and I both voted against a ban and a moratorium on therapeutic cloning. The published views of the three new members differ sharply from mine and May’s and are much closer to those espoused by Kass. Furthermore, not one of the newly-appointed members is a biomedical scientist. One, a pediatric neurosurgeon, has championed religious values in public life; another, a political philosopher, has publicly praised Kass’s work; the third, a political scientist, has described as “evil” any research in which embryos are destroyed.
As an experienced cell biologist and molecular biologist and a member of the Institute of Medicine and the National Academy of Science, I felt strongly that I had a duty to contribute all the knowledge and expertise I could to the Council’s most durable products, its written reports. Since I am not a specialist in stem-cell research, I believed, on the one hand, that I could remain above the fray in that I have no vested interest in any one branch of such research and, on the other hand, that my scientific expertise placed a particular burden on me to educate myself about this important research specialty, in preparation for the meetings and reports of the council. I therefore read and assessed the published science, attended sessions on current stem-cell research at national and international scientific conferences, and consulted with stem-cell biologists throughout the country. I was assured repeatedly by the Chairman that the science would be represented clearly in our reports.
I was therefore concerned when I read the sections concerning research on embryonic stem cells in the drafts of the report and the final Report on Monitoring Stem Cell Research. Work with animal models has been indicating the potential benefits of research involving embryonic stem cells for more than two decades. More recently, research breakthroughs in the generation and differentiation of human embryonic stem cells and increased understanding of these processes have suggested that this avenue of research will eventually lead to beneficial uses in health care. Work with animal models increasingly suggests that such research may result in therapies for diabetes, Parkinson’s disease, and spinal injuries, among other conditions. Yet the best possible scientific information was not incorporated and communicated clearly in the council’s report, suggesting that the presentation was biased.
How might perceived bias in a Federal Commission such as the Bioethics Council affect the ability of the nation to receive the best available scientific information on which to base policy decisions? Will researchers be unwilling to provide their expert opinions regarding their field of research for fear that they will be used to promote a particular view held by the council? I am afraid that this effect is already occurring. I was recently contacted by a world leader in research involving neural stem cells from adults; he was considering withdrawing his agreement to provide his expert opinion to the council, for fear that the potential of research involving adult stem cells would be overstated as a justification for a continued ban on federal funding for promising research on embryonic stem cells.
When prominent scientists must fear that descriptions of their research will be misrepresented and misused by their government to advance political ends, something is deeply wrong. Leading scientists are routinely called on to volunteer their expertise to the government, through study sections of the National Institutes of Health and advisory panels of the National Academy of Sciences and as advisers to departments ranging from health and human services to defense. It has been the unspoken attitude of the scientific community that it is our duty to serve our government in this manner, independent of our personal political affiliations and those of the current administration. But something has changed. The healthy skepticism of scientists has turned to cynicism. There is a growing sense that scientific research — which, after all, is defined by the quest for truth — is being manipulated for political ends. There is evidence that such manipulation is being achieved through the stacking of the membership of advisory bodies and through the delay and misrepresentation of their reports. As a naturalized citizen of the United States, I have an immigrant’s love for my country. But our country must not fail us. Scientific advice should and must be protected from the influence of politics. Will the President’s Council on Bioethics be up to that challenge?
New England Journal of Medicine, Vol. 350, No.14, pp. 1379-80 (April 1, 2004).
Downloaded from www.nejm.org on March 12, 2004.
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