Free the National Bioethics Commission

Ethics

ARTHUR L. CAPLAN

Free the National Bioethics Commission

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.

A renewed bioethics commission would begin by examining subjects that are important but no so fraught with immediate social and political baggage.

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.

A national commission must not be seen as a political arm of the White House.

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. Political events quickly swept over the nascent commission, and it never quite recovered its footing.

President Bush’s Council on Bioethics has been even more subject to the winds of politics. The appointment of its chair, staff director, and membership was carefully calculated to reflect the president’s strong antiabortion position. Nor has the politicization of committees been confined to bioethics. Advisory panels in areas as diverse as blood safety and human experimentation have been subject to micromanagement by the administration.

Worse still, the administration has not seen fit to wait to receive advice from its own bioethics council before advancing policies. The president’s positions on stem cell research, cloning for reproduction, and cloning for research purposes were all settled and well promoted without any attention having been paid to the deliberations or advice offered by his council.

A way forward

So, has recent experience shown that national bioethics commissions are simply a bad idea? Because of the controversial nature of bioethical topics, is there no way to free any commission from ideological and political constraints? At the end of the day, will commissions merely repeat what presidents and their advisers want to hear? Is it simply naïve to wish for a commission that could have sufficient credibility and standing to buck the political tides inside the Washington Beltway?

Maybe not. The biggest challenge that such commissions face is that they are seen as lightning rods by pro-choice and antiabortion forces. As in appointments to the federal bench and the Supreme Court, appointments to national bioethics commissions tend to be seen by many political operatives solely in the light of abortion politics.

But understanding that fact points toward the solution of how to form a national commission that can best serve the public. Create the commission not by presidential appointment but with input from Congress. Have the commission’s chair be approved by Congress. Give the president and Congress the right to appoint a minority of members, and assign authority for appointing the majority to nonpolitical entities, such as the National Academies or other academic associations. Give the commission a real budget, a professional staff, and tenure long enough to outlast any particular presidential or congressional term.

Even more important, direct the commission to begin by examining subjects that are important but not so fraught with immediate social and political baggage. This will help prevent breaking news from overwhelming its work. Among appropriate early subjects might be the lingering questions about the moral need for national health insurance, the formulation of international policies for distributing drugs to poor nations overwhelmed by HIV/AIDS, and how best to protect individual rights in an age of new genetic knowledge. Newer topics might include the wisdom of labeling foods to indicate the presence of genetically modified ingredients, or the ways in which new knowledge about the human brain should be used in the courtroom and the workplace.

A national commission should not begin its work with examinations of the morality of abortion or cloning or stem cell research. These topics can be examined, but a commission must earn public credibility before it can attempt to bridge the widest moral divides that set off loud political alarms in U.S. society. And a national commission must not be seen as a political arm of the White House: Ethical standing requires independence, not loyalty.

Care also must be taken to ensure that commissions are not misused. Politicians often find such advisory groups irresistible for furthering their own interests. Commissions can be useful as repositories for dumping issues that seem threatening or highly controversial, even if their members are not especially equipped to deal with the matters at hand. They also provide wonderful ways for politicians to signal their positions on issues to their political allies and friends, through the appointment of the like-minded and the committed.

The U.S. public can still benefit from the appointment of a national bioethics commission. But it should be a body that is beholden to few, willing to stay on course despite the flow of current events, ready to irritate a member of Congress or two, and equipped with the resources to generate studies that people on every side of a bioethical issue will find useful, credible, and insightful. Although the past indicates the challenges ahead, the promise remains well worth pursuing.


Arthur L. Caplan is Emmanuel and Robert Hart Professor of Bioethics, chair of the Department of Medical Ethics, and director of the Center for Bioethics (www.med.upenn.edu/bioethic) at the University of Pennsylvania.