Says Annas, "The job of ethicists is not to facilitate people doing new things, but to raise difficult questions. We're not supposed to be cheerleaders for every new thing that comes down the pike." The central question for Annas is, "What's the downside?"
Furthermore, the institutional dynamic of such proto-regulatory commissions forces them to worry about the political troubles that they will face should they approve something that later goes wrong. The NBAC, like the Food and Drug Administration, has every incentive to say no or "go very slow" to any new technologies.
"Many bioethicists argue that we need to stop developing these new technologies and then talk about whether we should allow them to go forward," says Stock. "They want technology to stop so that they can design the perfect system."
NBAC Chairman Harold Shapiro hotly rejects the notion that his commission retards biotech research. "There is no evidence that the work of commissions like this slows down research," he says. "No one has ever demonstrated that research has been slowed down without merit. There are no examples of that."
Others differ. "They'd surely have to be slowing research down," says Engelhardt. "Think about how Hillary Clinton probably impacted negatively important pharmaceutical research when she was [pushing a national health care plan] at the beginning of President Clinton's term. She had the view that progress should be slowed in order to favor a cost containment....So you can easily imagine how any commission under those circumstances would generate morbidity and mortality costs for people because technology is not being developed in a timely fashion." In other words, fear of government intervention causes biotech companies to delay research and development, ultimately increasing both sickness and death.
Actually, the NBAC is not powerful enough for many bio-ethicists. Annas wants to "move beyond an advisory committee and establish a regulatory commission, a federal Human Experimentation Agency, with both rule-making and adjudicatory authority." Annas' proposed agency would promulgate rules and have authority to review and approve or disapprove of biotech and biomedical research proposals. The agency would regulate research and treatments involving xenografts, artificial organs, embryo research (including cloning), and genetic engineering. It would also "recommend legislation to Congress, including, for example, a ban on the sale of human embryos." Annas concludes, "I would hope that it would slow things down."
The breakthrough in stem cell research was underwritten by the private Geron Corp., because the federal ban on experimenting with embryos doesn't extend to the activities of private companies. Annas' all-encompassing Human Experimentation Agency would close that loophole. Geron would be forced to submit its stem cell research proposal for approval. If such an HEA had existed, the usual caution of the bureaucrat doubtlessly would have slowed, if not stopped altogether, the development of stem cell technology.
The guiding star for the HEA would be an idea imported from radical environmentalism: the precautionary principle. (See "Precautionary Tale," April.) As Annas interprets the principle, those who propose major changes in the way that human beings live "would have the burden of proving that there is an important societal purpose for such an experiment before it is permitted." This principle shifts the burden of proof from critics and would-be regulators to innovators and researchers. Why does Annas want to make this shift? "Because the truth of the matter is that whoever has the burden of proof loses," he admits, "and so far the critics have always had the burden of proof, so they always lose."
But the creation of a central bioethics regulatory agency is too modest a goal for Daniel Callahan. "Can religion or bioethics or some other social group or force in our society call science to account when necessary?" asks Callahan. He notes that religion has lost much of its former cultural authority. In his view, bioethics could fill at least part of this vacuum. He envisions a bioethics that can say no to technological progress; a bioethics that transforms it-self into a sort of intellectual counterculture standing in opposition to "scientific ideology." Science, asserts Callahan, "desperately needs to have a serious and ongoing challenger...a David against its Goliath." The discipline of bioethics, as he imagines it, would not just have power over treatment choices and research agendas; it would play a central role in defining the "good society."
"Good science cannot tell us how to organize good societies or develop good people (or even tell us how to define `good') or tell us what is worth knowing," writes Callahan in the May 1996 issue of Society. Bioethicists, the new cultural clerics, would play that role, perhaps with inquisitional powers.
These are grandiose visions of cultural revolution. What we need instead is a return to the roots of bioethics: respect for patient autonomy as a central value. Such a modest bioethics would focus on helping patients and their families sort out the confusing choices before them in light of their own values. In fact, that's exactly what most working bioethicists do today: They work at hospitals, clinics, and research facilities talking with real people who need someone to help them make sense of the possibilities and perils that new medical technologies offer.
The moral work of bioethics should advance case by case, building a kind of common law morality in which bioethical principles arise from the accumulation of cases and evidence over time. As UCLA's Stock argues, "We should push forward while the technologies are young and mitigate problems as they arise."
Ultimately, biotechnology is no different from any other technology: People must be allowed to experiment with it in order to find its best uses. Inevitably, people will make mistakes. They will sometimes perform acts with unfortunate ethical consequences. But we learn from our mistakes. Ethical anticipation in the face of rapid change is a recipe for stagnation (and as it happens, that is the real goal of many committed egalitarian bioethicists). It is also futile: The smartest commission ever assembled simply does not have the creativity of millions of human beings trying to live the best lives they can with the help of new technologies.
"One of the greatest hopes for average people throughout the world is biotechnological progress," says Engelhardt. "I think that those who speak against the hope of that kind of progress speak against the hopes of millions of sick and dying people."
Callahan admits that "part of the problem with a society addicted to scientific progress is that we can hypothesize harms but we simply can't make a very convincing case that the potential harms are enough to impose limits to a technology. People think that if we begin setting limits, soon there will be no way to stop the intrusion of limits on technological progress."
It turns out, to Callahan's dismay, that ordinary people like Joy Simha and Sidney Gunst are a lot warier of bioethicists than they are of biotechnology.
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