Doctors With Borders
During the media frenzy surrounding Terri Schiavo in March 2005, Reverend John J. Paris***, a bioethics professor at Boston College, told Newsweek it was "ethically acceptable to remove all medical interventions." In an interview with the National Review Online, Princeton bioethicist Robert P. George warned against "the temptation to regard some human lives" as "unworthy of life." On television and radio, too, bioethicists turned out to defend both sides.
The Schiavo episode, of course, exposed the clout of the Christian right and the divisions within the nation. But it also highlighted the growing prominence and internal disagreements of bioethics. Confronted with such controversies and with new biotechnologies, we increasingly turn to these experts for guidance. Now, with the press abuzz about Bush's stem cell veto and post-Katrina lethal injections, bioethicists seem assured of continued status as media darlings. Bioethics is also expanding its presence in institutions outside academiain government, hospitals, and pharmaceutical companies. As its influence grows, members of the bioethics community are debating not only the field's issues, but also its proper role.
Bioethics refers to both a general area of inquiry and an interdisciplinary academic field. The field is growing fast, with numerous programs cropping up in recent years. The major center at the University of Pennsylvania was founded in 1994, and Columbia's Center for Bioethics just celebrated its fourth anniversary. Even today, most scholars in the field have degrees in other disciplines law, philosophy, medicine, theology. But as more universities offer degrees in bioethics, more graduates will share a common background, including the history and methods of bioethics. Career options include work in academia, hospitals, and industry. The elastic designation of "bioethicist" can refer to someone with a degree in the field or to anyone who studies the relevant issues.
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Some of those issues are age-old doctor-patient relationships, research ethics. (There is more consensus in these areas; no bioethicist would argue against informed consent, for example.) Other questions concern biotechnological innovations such as cloning, genetic engineering, stem cell research, and organ transplantation. Perhaps because the quandaries are newer, or because the competing values involved are more complex, consensus here is not achievable, or even desired.
According to Ruth L. Fischbach, director of the bioethics center at Columbia, "There have always been ethical considerations, from the time of Hippocrates," but the modern field arose in response to the atrocious Nazi experimentation on human subjects. Others link the field's birth with the new technologies of the late 1960s and early 1970s, such as kidney transplants and advances in genetics. But whether its roots are traced to moral failure or scientific success, everyone can agree that the field aims to negotiate how to capitalize on the latter while avoiding the former.
Bioethics was never destined for sequestration in the ivory tower. The nature of the field makes it more applicable to practical affairs than, say, French literary theory. But after Georgetown founded the first academic center, the Kennedy Institute of Ethics, in 1971, some factions did adhere to fundamentally academic modes of inquiry. A central debate is whether the purpose of bioethics should be to illuminate or to advise.
Carl Elliott, professor at the University of Minnesota's Center for Bioethics, has written that "bioethics may begin to look less like a field of scholarship and more like a branch of the advice industry." "Part of the reason I don't like to be called a bioethicist," he says, "is that it's assumed that the conversation is going to be about right or wrong." He is more interested in the reasons underlying the demand for biotechnologies (e.g., enhancements) as analyzed in his 2003 book Better Than Well.
Others believe that bioethicists have the responsibility to play an advisory role. Arthur Caplan, director of U Penn's center, argues, "Illumination is a perfectly fine activity, but ultimately you have to advocate when you've reached a position you can defend." He adds, "You don't want to confuse advocacy with final authority. When people say, 'Why should I listen to what you have to say?' the answer is, 'You don't have to.' "
But bioethicists have an aura of moral authority not enjoyed by, say, politicians. Skeptics worry that bioethics will be exploited for moral cover. The President's Council on Bioethics, convened in 2001, produces reports, holds hearings, and offers nonbinding policy recommendations. The council's purview includes cloning, stem cells, and "human dignity," and its work shows impressive sensitivity. But critics charge that it "very much reflects Bush's agenda," says Yale's Robert J. Levine. In 2004, two members with dissenting views on stem cell research were replaced.
The problem is even more vexed when it comes to Big Pharma. "I'm sad to say I'm a little skeptical of bioethicists who work for pharmaceutical companies," says Fischbach. Elliott fears that as insiders, bioethicists employed by industry will inevitably become more accommodating. He describes academia as a "protected place where you can say unpopular things." Some of his colleagues, he alleges, "treat industry funding as if it's more or less equivalent to academic funding, but it's not. The agenda is making money," not intellectual inquiry. If the company doesn't like what it hears, it can find a bioethicist with a more sympathetic opinion. (Many centers get some of their funding from industry as well.)
Some bioethicists have more faith in their own. "I think that any substantial bioethicist who would issue a faulty recommendation lays his or her reputation on the line," says Levine. As Caplan puts it, "There are plenty of people who say, 'They're not going away. Of course we'll help them, if we can help them do a better job.' " He believes there has been a small but distinct positive influence on the industry, such as more rigorous enforcement of informed consent and drug giveaways in developing countries. (Caplan has been criticized for consulting for pharmaceutical companies.)
Many hospitals, too, have ethics committees. Columbia bioethicist David Rothman's study Strangers at the Bedside (1992, reissued in 2003) examined how ethics committees, in government and hospitals, have taken discretion out of the hands of individual doctors. He sees advantages to the new system, but also losses, as doctors sacrificed their traditional reliance on case-by-case judgments. Dr. Levine is a member of the bioethics committee at the YaleNew Haven Hospital, whose advisory role is nonbinding but influential. When asked if the system works well, he laughs, "No," then adds, "Democracy in the U.S. is not a perfect system. Things go wrong. It may not be a perfect system, but it beats the second-best by a long shot."
No doubt bioethicists have the potential to effect good. When considering new scientific possibilities, the motto of bioethics, says Fischbach, is "Just because you can do it, doesn't mean you should do it." As bioethicists encounter more opportunities beyond the academy, some among their ranks would urge them to keep that motto in mind.
***Correction: This article originally reported this name as Faris. It now appears correctly as Paris.
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