Free the National Bioethics Commission
Caplan, Arthur L., Issues in Science and Technology
The creation of a national commission in the United States to study and discuss bioethical questions seemed imperative a decade ago. One reason was that a number of other countries, including Australia, Denmark, France, and Great Britain, had created national commissions that were producing useful results for both science and the general public. Another was that previous national commissions from the early 1980s had proven helpful in identifying and managing various bioethical challenges.
There also seemed to be no shortage of bioethical problems that demanded national debate. The key problems of the moment included the need to examine the adequacy of protections for human subjects in clinical research; to set policies covering the application of new genetic knowledge, especially with respect to individual privacy and confidentiality; to determine whether and how research on embryos should be allowed and funded; to develop an ethically grounded policy for dealing with the human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) on a global basis; and to examine what should be done to move the nation toward universal access to health care.
In retrospect, these were good reasons to create a national commission. This diagnosis of pressing problems also proved to be prescient: Each of these areas has proved to be explosive and controversial. In the intervening years, a series of research scandals has shaken the legitimacy of human subjects research to its core. The completion of a rough map of the human genome has prompted concern among many people, and their worries have helped push forward, for better or worse, the Health Information Privacy Protection Act, which many research institutions and universities are struggling to implement. National and international public interest regarding embryo research seems destined to mount, in the wake of the cloning of Dolly the sheep; the announcement by a private company of the creation of the first cloned human embryo; and subsequent announcements by various cults, kooks, and fringe scientists that they have made or soon will make the first cloned human baby. There has been and continues to be much controversy about how to conduct both research and charity to fight the scourge of HIV/AIDS in poor nations. And without a moral consensus about how to make sure that every U.S. citizen has access to requisite health care, nothing has been done to advance this avowed goal of many people in society and politics.
Hopes not met
Certainly, all of these woes cannot be the result of a failure to create a national bioethics commission, for there have been not one but two such commissions since 1994. In that year, President Clinton created the National Bioethics Advisory Commission, and President Bush announced in 2001 the creation of a Council on Bioethics to advise him. (Harold Shapiro, then president of Princeton University, headed the first body, and Leon R. Kass, a University of Chicago professor, chairs the second.) So if all of these issues remain unresolved, what could the possible value have been of a national bioethics commission?
Without question, the two groups have done a lot of work. They have held hearings, issued reports, created Web sites, given advice to the presidents, and engaged the public through the media and the writings of commission members about various issues.
It can fairly be said, however, that neither of these groups really lived up to the hopes that many observers, including myself, had for what a national bioethics commission could achieve.
One hope was for a commission that would have independence from political constraints. That would require a commission with a long tenure, a strong professional staff, an adequate research budget, and firm bipartisan support. The two commissions created during the past decade have had few of these traits.
President Clinton's National Bioethics Advisory Commission might have proven to be a forum for public engagement and independent research, but it was quickly sucked into the contretemps that followed the cloning of Dolly the sheep. …