GENERAL OBSERVATIONS AND CHALLENGES

So how, then, do we measure success or failure in this enterprise of ours? It is very hard to know. That many are firing at us, from both left and right, might be taken as a sign that we are having an impact, if only as an irritant. But, more seriously, it is possible to say something with regard to the specific functions that we were created to discharge.

Regarding our educational function and the goal of increasing public understanding, the record is mixed. If we are talking about educating policymakers, one thing I have learned in Washington is that it is very hard to educate anyone about an issue unless you are prepared to tell them what they ought to do. Absent specific policy recommendations, busy legislators and government officials are not going to take the time to read lengthy reports and ponder. For this reason, I suspect that several of our projects have done little to advance public understanding in these narrow quarters. But regarding the wider public, I believe that the news is clearly much better. The Council’s website is highly used. And three of our publications have been re-published by commercial publishers with the express goal of getting them into circulation for college and university teaching. [Human Cloning and Human Dignity; Beyond Therapy: Biotechnology and the Pursuit of Happiness; and Being Human.] Testing the educational value of these materials is, of course, partly up to readers of this journal: try them out; see if they do the job.

With respect to serving as a forum for national debate about bioethical issues, the Council has received an enormous amount of attention, and much ink has been spilled about us, most of it not on matters of substance. But we increasingly see references to our work, and the Beyond Therapy report in particular has stimulated a great deal of discussion on enhancement issues. In addition, we have contributed to a much wider public debate—about stem cell research or cloning or the regulation of biotechnologies—than occurred before we started our work.

On specific policy issues, we thus far have had no demonstrable effect. Our recommendations in the cloning report were not picked up legislatively. Yet it is too soon to tell what will happen to the recommendations from the Reproduction and Responsibility report: it was issued just as the 2004 election season shifted into high gear, and we must wait to see whether it can garner any legislative interest and support in the new Congress. I remain guardedly optimistic on this score. In other respects, I do believe that our work has been influential, for example, in encouraging various professional groups to re-examine and improve their own monitoring practices and tighten their own guidelines. Prodded in part by the attention we have given their activities over the past two years, the American Society for Reproductive Medicine has been revising several of its ethical positions and practice guidelines. In a most important new development, the Society has called for a significant reduction in the number of embryos transferred during IVF procedures, seeking to decrease the incidence of multiple births, the single largest cause of disability in the children born using assisted reproductive techniques (Practice Committee 2004).

Finally, concerning our charge to conduct fundamental enquiry into the human and ethical significance of biomedical advance, one must confess that such enquiry is hard to pursue with a fractious bunch of professors. Yet I do think we have succeeded in enlarging the terms of the debate. And we have given much greater visibility to questions of the goodness of human ends and to questions about the character of the society that we are creating—and wish to create—with the aid of new biotechnologies.

This larger vision of the purpose of bioethics has been central to our work, and I hope it also will be our lasting legacy to the field. In the age of biotechnology, bioethics must do more than take up various techniques, and measure them to see if they might run afoul of beneficence, respect, and justice, and then move along. We have become quite good at noticing dangers to life, threats to freedom, risks of discrimination, signs of exploitation, and interference with the pursuit of pleasure. These are important, to be sure, but they are also the sorts of dangers that society is already very much “on alert” to avoid. Bioethics should attend to these, but it must also do us all the service of leaning against our modern inclinations and correcting for our excesses. This means that it must do much more than enforce a checklist of liberal shibboleths that need guarding. And it must offer more than an exchange of sanctimonious permission slips for unrestrained scientific freedom and technological innovation.

A proper bioethics must lead public reflection on the ways in which new biotechnologies may affect those things that matter most regarding how human lives are lived—things like family and friendship, childhood and parenthood, youth and old age, pride and humility, excellence and charitable love, and countless other crucial human intangibles that stand to be profoundly altered by new biotechnical powers. This means beginning by reflecting upon the highest human goods and understanding the latest technological advances in this light. It means practicing a truly humanistic bioethics enriched by the wisdom of the ages, suitably vitalized to inform the judgment of our democracy in an age of very complicated choices. It is this spirit, above all, that distinguishes our Council’s work, that informs the pages of every one of our reports, and that has defined the task we as a group have set out for ourselves.

I also hope that the future of public bioethics might learn something from the way in which this Council has viewed the relation between science and the political community, and especially the role of bioethical “experts.” For moral advice in dealing with sticky ethical issues, in recent years, biologists and biotechnologists have turned to bioethicists to help negotiate the difficult straits between science and society. Hospitals and biotech companies have hired them. Scientific societies retain them and the Human Genome Project has housed them handsomely under the tent of big funding. And many bioethicists, for an honored seat at the conference tables and a share of the federal budget, have been only too glad to oblige. But it is not clear that society has been served adequately by this congenial compromise. For one thing, the arrangement has included only mainstream academic bioethicists, who are not representative of society as a whole. They largely share the scientists’ moral outlook, a progressivist and Enlightenment view of the world, and a corporealist metaphysic. Most important, this arrangement suffers from an exaggerated view of the importance and sufficiency of expertise: scientific and technical expertise, on the one side, bioethical expertise, on the other.

Until our current bioethics Council, previous public bioethics deliberation was set up to produce a mixture of academic experts, scientific and ethical, with a feeble smattering of “public members.” The goal, quite explicitly, was to shield these vexing and delicate subjects from the unwelcome intrusions of the noisy and contentious political process. These bodies have been very helpful, especially in devising regulations or refining practices But because the bioethicists who have served on these bodies largely approve of whatever scientists propose to do, they will—after a suitable amount of hand-wringing—pronounce their moral blessings upon whatever practice is under review. But the price of this congenial relation is that official public bioethics has been insulated from the larger political culture where real and serious differences exist and where academic arguments of ethicists hold little sway. Worse, this attempt at government by experts has isolated the larger society from the opportunities and responsibilities of public decision making. Where biotechnology may be taking us is everyone’s business. It is therefore fitting that the public should be involved.

The people who have accused our Council of politicizing science and bioethics have been right, but not in the way they meant. As I said earlier, we are a Council on bioethics, not a Council of bioethicists. We were constituted to reflect the large differences of opinion in the community at large. We have helped to bring important bioethical issues into the public arena, beyond the private domain of a small group of experts. We are proud of the fact that we eschew academic jargon, consider sensibilities as well as arguments, and welcome all perspectives—not just secular and liberal ones—into the public conversation. To be sure, in public discussion the experts have their role to play. But our ultimate arbiters of the right relations between science and society are the people and their representatives. For it is they—we—who are charged to think, act, and govern in this age of biotechnology in ways that will do full justice to our humanity.

The Council’s task as a public bioethics body is as daunting as our ambition is high. The road is long and difficult. But I would like to think that we have made a useful start. The difficulties that certainly will confound further steps along this path are both practical and intellectual. Efforts to improve ethical oversight and develop workable regulatory practices and institutions of the sort that the Council has envisioned will run up against the nature of the American approach to regulation. We have little tradition for regulatory activities beyond matters of safety and effectiveness. We have a decentralized medical profession, rarely subject to scrutiny or guidance from above. We are wedded to the principles of freedom and laissez faire, and most people with a stake in biotechnology are deeply suspicious of and resistant to the idea of more governmental interference. And, finally, we face some truly intractable questions and issues: like Solomon’s baby, the embryo question cannot be split down the middle.

Efforts to expand the scope of bioethical reflection, meanwhile, will likely be stifled first and foremost by the overwhelming predominance of “the life question” in our public considerations of bioethical topics. This has certainly been one of the most frustrating aspects of public bioethics as I have experienced it these past three years. All too often in public debate, bioethical controversy is fought out on the plane of what one may call the “the life principle,” the principle that calls for protecting, preserving, and saving human life. The proponents of embryonic stem cell research argue vigorously and single-mindedly that stem cell research will save countless lives. The opponents of the research argue with equal vigor and single-mindedness that it would in the process destroy countless lives. As posed, it appears as an argument between two sorts of “vitalists” who differ only with respect to whose life matters most: the lives of sick children and adults facing risks of decay and premature death, or the lives of human embryos who must be directly destroyed in the process of harvesting their stem cells for research. Each side often acts as if it has the trumping argument: “Embryonic stem cell research will save the lives of people with diabetes or Parkinson’s disease,” versus “Embryonic stem cell research will kill tens of thousands of embryos.” These are surely important—indeed, crucially important—concerns. But, at the risk of giving offense, I wish to suggest that concern for “life”—for its preciousness and its sanctity, whether adult or embryonic—is not the only important human good relevant to our deliberations. We are concerned also with human dignity, human freedom, and the vast array of human activities and institutions that keep human life human.

Important though it is, the “life principle” cannot continue to be the sole consideration in public bioethical discourse. Some efforts to prolong life may come at the price of its degradation, the unintended consequences of success at life-saving interventions. Other efforts to save lives might call for dubious or immoral means, while the battle against death itself—as if it were just one more disease—could undermine the belief that it matters less how long one lives than how well. At the beginning of life, certain modes of conceiving children—for example, by cloning—threaten human dignity, even if no embryonic lives should be lost in the process. And, in extreme circumstances, perhaps, lives may even need to be risked or even sacrificed so that the community might survive and flourish. Such questions of the good life—of humanization and dehumanization—are of paramount importance to the field of bioethics and to the future of our nation and the human race.