"Moral Questions about Stem Cell Research:
Ethics after Prop 71"
San Diego Union-Tribune. January 6, 2005.

Prior to the November election in California, the assumption was that the only moral question about Proposition 71, "The California Stem Cell Research and Cures Initiative," was the question of the moral status of the human embryo. California, in contrast to the rest of the country, is now in a position where that issue as a matter of public policy has been settled. Given the narrowness of the public debate prior to the election, one might think that no other ethical issues remain on the horizon.

Nothing could be further from the truth. A thicket of tangled and prickly moral issues lies ahead of the stem cell initiative, and a robust public discussion of those issues is of crucial importance if we are to get these issues right. Consider some of the most important ones.

What criteria will be used to decide which research should be funded? The promise of this initiative, the appeal to voters, was precisely the hope that human embryonic stem cell research will produce cures for previously incurable life-threatening diseases. Will support be given to those lines of research likely to save the most lives? What of research on non-fatal disorders that can currently be managed but not cured, such as juvenile diabetes? Presumably one criterion in apportioning funds will be promise of benefits. What kind of benefits? To whom?

Just as important will be the question of who owns these benefits. The citizens of the state of California in an unprecedented measure have chosen to fund this initiative. Do they, as the state legislature is now discussing, have any special claim to the patents and monetary profits? Just as importantly, do they have any claim of special access to the cures? And should efforts be made to ensure that these cures are relevant to the state’s minority populations as well as to the majority? Given that most human embryos would be obtained from fertility centers, which have patients who tend to be upper middle class white couples is an effort needed to ensure that some research is done with stem cells from minority populations?

Who decides these issues? Here one of the thorniest of ethical issues stands before us. Presumably the decision-makers should be both highly knowledgeable (to judge proposals competently) and impartial (to judge them fairly). What do we mean by “knowledgeable?” This certainly includes scientific knowledge, but does it also include knowledge about the ethical, social, and legal implications of such technologies? Furthermore, and even more troublesome, impartiality is hard to achieve without giving up on expertise. Many of those best qualified to judge research proposals are either competitors for such funding or leaders of institutions that are competing for such funding. Already one nominee to the Independent Citizens' Oversight Committee, Joe Panetta, the head of Biocom in San Diego, has withdrawn his name from consideration, citing possible conflicts of interest.

What about the rights of the embryo donor and their informed consent? Are embryos donated for research in general? Do researchers have any obligation to be more specific in their information to potential donors? For example, it is arguably important that a potential donor be informed about what experiments will be done and the purpose of those experiments.

Informed consent will become even more of an issue as these research programs move toward clinical trials. A fundamental tension is built into this situation, the tension between urgency and patience as recently described so well by Jonathan Weiner in his book " His Brother's Keeper:  A Story from the Edge of Medicine." This research offers promise of relief from some of the worst disorders confronting us today: Alzheimer’s, ALS, spinal cord injuries, juvenile diabetes, and the like. All of these, to varying degrees, promote a sense of urgency—not only do we want cures, but we want them now so that no more additional lives will be lost. Yet at the same time, we want to avoid rushing too quickly into clinical trials, trials in which humans could be severely damaged or killed as a result of unanticipated side-effects. Recent revelations about Vioxx, Paxil for adolescents, and other medications suggest that even with existing protections, we still make mistakes.

In Alzheimer’s and similar disorders, the stakes are even higher. In order to avoid the debilitating effects of Alzheimer’s, it is important to begin treatment early, probably before there is little noticeable evidence of the problem. But this could be problematic in the case of new therapies. By their nature, such therapies have not yet been tested with a wide spectrum of patients and over a long period of time. The possibility of mistakes or unanticipated consequences is high. To take that risk with a patient at death’s door is one thing, but to take that same risk with a person who is presently a well-functioning adult with minimal or no symptoms of Alzheimer’s is quite different. Much more is put at risk in this situation without the certainty of well-established therapies.

Now that Proposition 71 has been passed, we must shift our attention to the full range of ethical issues raised by this initiative. California will be a leader in this area. However, it is important that we lead not simply in scientific excellence, but also with moral wisdom about the ethical and social implications of stem cell research. The first step in this process is the discussion of these ethical issues in public forums, with the various oversight boards, in the labs themselves, and in the schools. This bold funding initiative is a privilege and an opportunity. All of us have a stake in anticipating and avoiding pitfalls that might keep us from realizing the benefits of the highest quality of research.

Lawrence M. Hinman , Director of the Values Institute and Professor of Philosophy at the University of San Diego, writes widely in the area of applied ethics; he is also the founder of Ethics Updates (http://ethics.sandiego.edu) and Ethics Videos (http://ethics.sandiego.edu/video/).

Michael Kalichman , Director of the Research Ethics Program and Professor of Pathology in the School of Medicine, University of California at San Diego, writes widely in the area of research ethics and the responsible conduct of research. His website on research ethics is at http://ethics.ucsd.edu

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