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BIOETHICS

What Kind of Bioethics Council Do We Need?

Science Tells Us What We Can Do; Values Tell Us What We Should

President's Council on Bioethics seal with stethescope SOURCE: bioethics.gov Many genetic, reproductive, and biomedical technologies now in development pose new societal challenges, raising questions about how we understand and uphold social justice, human rights, and even our shared humanity.

Bioethics councils have come in many shapes and sizes, with different mandates, memberships, and outcomes. What kind of bioethics council would best serve the nation now? How can we move beyond the rancor and polarization—not to mention hyperbole and distortions on all sides—that in recent years have characterized so much of bioethics and the broader politics of science? There is no one answer, but a new council must incorporate viewpoints from Americans of all walks of life, maintain an appropriate distance from both scientific and commercial interests, and build on the experience of other nations.

President Obama’s leadership on stem cell policies and politics begins to show a way forward. The President opened the remarks that accompanied his March executive order loosening restrictions on federal funding of embryonic stem cell research by invoking the work’s great promise, and then immediately moved on to warn against overstating its potential. He noted the “difficult and delicate balance” between “sound science and moral values.” He pledged that research supported by the federal government would be “both scientifically worthy and responsibly conducted” according to “strict guidelines, which we will rigorously enforce, because we cannot ever tolerate misuse or abuse.” He singled out human reproductive cloning as an instance of intolerable misuse: “It is dangerous, profoundly wrong, and has no place in our society, or any society.”

Several months and some 49,000 public comments later, the National Institutes of Health released its final stem cell research guidelines. In accord with the positions that a majority of Americans report to pollsters (and that candidate Obama expressed during the presidential campaign), the guidelines permit federal funding of research using stem cells derived from embryos created but not used in the course of fertility treatments. They exclude funding for research on cell lines derived from human embryos created specifically for research purposes, whether by in vitro fertilization or with cloning techniques.

The president’s leadership was not just a matter of striking a thoughtful tone and including obligatory references to respect for differing views. His emphatic rejection of human reproductive cloning was motivated by the health risks it poses, and also by a clearly articulated moral judgment about right and wrong. This is significant because it goes beyond the narrow safety and procedural considerations that many researchers and bioethicists cite as the only legitimate reasons to forgo efforts to clone humans or attempt other widely opposed forms of human genetic manipulation. It asserts that while science and technology are uniquely positioned to tell us what can be done, in the final analysis social values, mediated and expressed through democratically accountable institutions, must determine what should be done.

A new bioethics council might also look to the path that the president is forging on hot-button social issues like abortion rights and the appointment of a Supreme Court justice. He has worked to widen the perspectives and communities that are included in deliberations, called for empathy in considering the consequences of decisions, and mounted a serious search for common ground while insisting on clear policy lines where they are needed.

Policy advice? Philosophical deliberation? How about both?

In June, when the administration announced its intention to appoint a new bioethics council, a White House press officer told The New York Times that the new council would have a mandate to offer “practical policy options.” He characterized the Bush bioethics council, in contrast, as “a philosophically leaning advisory group.”

Some heard in these remarks an endorsement of the kind of bioethics that focuses on procedural and technical issues—the wording of informed consent documents, the acceptable incidence of high-order multiple births, the details of bio-containment precautions, and the like. These are important matters, and bioethicists have played key roles in bringing them to public attention and proposing ways to address them.

But many genetic, reproductive, and biomedical technologies now in development pose societal challenges of a new and far-reaching kind, raising questions about how we understand and uphold social justice, human rights, and even our shared humanity. Will biotechnology products and practices revive discredited ideas about biology and race? Will they exacerbate existing social inequalities or produce deeper divides and conflicts? Will the pursuit of the “perfect child” reduce our solidarity with people with disabilities? Will women’s reproductive capacities increasingly be bought and sold? Will we look to genes rather than social institutions to understand and improve our lives and communities?

Such questions clearly demand more than improved informed consent protocols or another round of mouse experiments. They call for substantive deliberation about meaning and consequences, among the widest range of stakeholders, and drawing on social, political, historical, scientific and—yes—philosophical knowledge and wisdom.

Bioethics and inclusive democracy

Although it will be challenging, we must find ways to extend the purview of democratic oversight to these questions and challenges. There are many ways in which a national bioethics council could contribute to this effort. Three are briefly described here.

First, although a new bioethics council must involve scientists and bioethics professionals and be rigorously grounded in scientific knowledge, it must not be monopolized by either. We need robust public engagement with the social challenges of human biotechnologies, their purposes and meanings, and their consequences for social justice, human rights, and equality.

Unfortunately, there is currently an asymmetry of influence and access in public discussion of bioethical issues. As Sujatha Jesudason of Generations Ahead pointed out in an essay here earlier this year, “many scientists and industry groups are already well-staffed and well-organized on these issues.” Most Americans, by contrast, have few resources for making their views on these issues known. Allowing the national dialogue to be dominated by professional bioethicists and scientists in white lab coats runs the risks of alienation and backlash.

Any new bioethics council should find innovative approaches for meaningfully involving Americans from all walks of life, with town hall meetings, public consultations, interactive online tools, and the like. In addition, it should include key leaders from the full spectrum of civil society and public interest constituencies. Council members would not formally represent particular communities, but a wider range of perspectives would help to equalize power among different social groups. Special care should be given to ensuring that those under-represented on past bioethics bodies and those particularly affected by the biotechnologies in question now have a seat at the table.

Avoiding “advisory capture”

Second, any new bioethics body should avoid what might be called “advisory capture.” Just as regulatory agencies must guard against being manipulated by the very interests they are meant to keep an eye on, bioethics advisory bodies must maintain an appropriate distance from the scientists and commercial enterprises whose work raises the social dilemmas about which they are deliberating, and from bioethicists whose professional interests are too closely aligned with those scientists and firms.

An illustration of the danger of advisory capture can be seen in a recent statement by a member of the New York stem cell agency’s bioethics board. In the course of a discussion about whether women who provide eggs for cloning-based stem cell research should be paid beyond reimbursement of their expenses, this bioethics expert said, “I think that we are an ethics committee, and I actually think that, if good science demands these oocytes, that we have the obligation to provide them.” At issue here is not agreement or disagreement with the policy in question, but the risk of advisors becoming justifiers, promoters, or rubber-stampers.

Capping the number of scientists and aligned bioethicists on the new bioethics council would help prevent or at least mitigate such problems. In addition, the council should adopt robust conflict-of-interest policies of the sort that regulatory agencies have developed to protect the public interest.

Looking beyond our borders

Third, a national bioethics council should take advantage of the important work that has already been done throughout the world toward development of responsible policies for genetic, reproductive, and biomedical technologies. The United States is in many ways an outlier, with few meaningful regulatory and oversight policies in place. By contrast, many key countries, including the United Kingdom, Canada, France, and Japan, have established national regulatory agencies designed to facilitate research done in an accountable and socially responsible manner, while precluding unacceptable activities.

Although the differences among national cultures and contexts can be significant, members of the new bioethics council could learn a great deal from both the successes and the shortcomings of other countries’ experiences. Consultations and meetings with policy makers and staff who have been involved with these agencies, and with scholars who have studied them, would likely provide important insights.

These suggestions would help put a new bioethics council on a productive and democratically accountable course. They would encourage both substantive and practical insights into the consequential issues it will surely confront. And they are consistent with the values that President Obama has declared will guide his administration.

Marcy Darnovsky, PhD, is associate executive director of the Center for Genetics and Society, www.geneticsandsociety.org. The Center’s recommendations for the Obama Administration are compiled in Responsible Federal Oversight of the New Human Biotechnologies.

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