Science & Technology

The Presidential Commission on Birth, Death, and the Meaning of Life

Obama's new bioethics czar just wants us all to get along.


In November, President Barack Obama issued an executive order establishing a new Presidential Commission for the Study of Bioethical Issues. He appointed political scientist and University of Pennsylvania president Amy Gutmann as the chair of the new Bioethics Commission. Such commissions are charged with working through tough questions about intellectual property rights, the protection of human research subjects, scientific integrity and conflicts of interest in research, and the intersection of science and human rights. In his order, the president empowers the commission to "identify and examine specific bioethical, legal, and social issues related to the potential impacts of advances in biomedical and behavioral research, healthcare delivery, or other areas of science and technology."

So how might the new Bioethics Commission operate? Fortunately, we have some idea because its new chair, Amy Gutmann, outlined her views on how bioethics commissions should be run in an article, "Deliberating About Bioethics" in the Hastings Center Report back in 1997. Most of the 13 member panel hasn't been appointed yet, but Gutmann is well-known for her scholarly work on deliberative democracy, which she defines "as a form of government in which free and equal citizens (and their representatives), justify decisions in process in which they give one another reasons that are mutually acceptable and generally accessible, with the aim of reaching conclusions that are binding in the present on all citizens but open to challenge in the future."  

In her article (co-authored with political philosopher Dennis Thompson), Gutmann distinguishes deliberative democracy from proceduralism and constitutionalism. In proceduralism, once basic rules of the game have been hammered out, moral disagreements are resolved through political bargaining or by moving them out of politics into the private sphere. Constitutionalism tries to avoid moral disagreement by creating a sphere of protected rights that are shielded from ordinary politics.

In Gutmann's conception, deliberative democracy is an ongoing, transparent, society-wide discussion of fundamental values. Deliberative democracy is supposed to serve four important social purposes by addressing four ineradicable sources of moral disagreement. She identifies the four sources of moral disagreement as arising from (1) the scarcity of resources; (2) limited generosity; (3) incompatible moral values; and (4) the incomplete understanding that characterizes almost all moral conflicts. The four social purposes that deliberative democracy is supposed to address are (1) the promotion of the legitimacy of collective decisions; (2) the encouragement of public-spirited perspectives on public issues; (3) the promotion of mutually respectful decisionmaking: and (4) the correction of inevitable collective action mistakes.

Gutmann offers some concrete examples of how she thinks deliberative democracy might work. Let's take scarcity. She notes that far more people need organs than there are organs available for transplant. How do we decide who gets them? She suggests that "deliberation can help those who do not get what they want or even what they need come to accept the legitimacy of a collective decision." As it happens in 1984, the U.S. Congress passed the National Organ Transplant Act which made organ sales illegal. Since then donated organs have been allocated by the United Network of Organ Sharing based on various medical criteria depending on the specific organ. Although some voices (including mine) have been arguing for compensating donors as a way to increase supplies, it is true that there has not been much public pressure to change the current system. However, one hopes that the deliberative process will someday correct this particular collective action mistake. On the other hand, we can expect a lot more bioethical deliberation if the U.S. adopts a more centralized and increasingly government-controlled health care system. In another article Gutmann favorably cites the United Kingdom's National Institute for Health and Clinical Excellence (NICE) as an example of how democratic deliberation works in making decisions about what medicines and treatments will be made available to patients in that country's National Health Service.

The next issue is limited generosity. Gutmann acknowledges, "Deliberation will not turn self-centered individualists suddenly into public-spirited citizens." She argues that members of bioethics commissions should not be chosen just to represent specific interest groups; that would simply result in old-fashioned interest group bargaining. Gutmann asserts that the number and diversity of voices on a bioethics commission is not necessarily the most important factor in making deliberation work. Instead bioethics commissioners "must come to the forum open to changing their own minds as well as to changing the minds of their opponents." Bioethics commissioners will be more amenable to changing their minds on such limited questions as when is it appropriate to include minors in medical research rather than issues like abortion and assisted suicide.

Which brings us to Gutmann's third source of moral disagreement—incompatible moral values. Here she recommends that bioethics commissions isolate irresolvable conflicts and focus on areas where agreement might be possible, e.g., minors in medical research. As an example of how deliberation can "economize" on moral disagreements, she cites the fetal tissue research guidelines issued in 1975 by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission held extensive public hearings and consulted legal experts, scientists, ethicists, and philosophers before promulgating its regulations allowing fetal tissue research. Those regulations included the requirement that researchers seeking to harvest tissue not have any part in the timing, method, or procedures used to terminate a pregnancy; no inducements to terminate a pregnancy could be made; both parents must consent; and artificial life support for nonviable fetuses was prohibited. But this deliberative outcome did not hold. In 1988, arguing that the fetal tissue research could encourage abortion, the Reagan administration imposed and later the Bush administration maintained a federal funding moratorium on fetal tissue transplant research. The moratorium was lifted by President Bill Clinton in 1993.

The history of the bioethical deliberation over fetal tissue research might be seen as an example of Gutmann's fourth purpose of deliberation, the correction of mistakes. In the fetal tissue case, later experts did argue that political appointees under Reagan and Bush were mistaken in their belief that federal funding of fetal tissue research would lead to more abortions. On the other hand, given that a National Institutes of Health advisory panel in 1988 recommended after considerable deliberation that the moratorium be lifted, one suspects that the encourages-more-abortions argument for banning federal funding was a stand-in for a deeper philosophical repugnance toward all abortion. In any case, the fetal tissue case and President Obama's decision last year to overturn President George W. Bush's limits on federal funding of human embryonic stem cell research shows that bioethics decisions in the U.S. are already provisional and open to challenge.

I generally agree with the proceduralists and constitutionalists. In order to keep the social peace and allow various visions of the human to flourish along side of one another, certain big questions about birth, death, and the meaning of life must be isolated from politics, making them private concerns to be protected from majoritarian tyranny. But for her part, Gutmann concludes hopefully, "By making democracy more deliberative, we stand a better chance of resolving some of our moral disagreements, and living with those that will inevitably persist, on terms that all can accept." Given the current stark polarization that characterizes our national political institutions (if not public opinion), Gutmann, as head of the new Presidential Commission for the Study of Bioethical Issues, has her work cut out. Good luck to her.

Ronald Bailey is Reason's science correspondent. His book Liberation Biology: The Scientific and Moral Case for the Biotech Revolution is available from Prometheus Books.