The Rule Of Law

While scientists and bioethicists work out their relative contributions to ethical debates, both say that many of the most important issues will eventually be resolved by yet another professional group-lawyers. The regulations and policy guidelines produced by various federal panels and commissions are often largely written by lawyer members. In addition, researchers and ethicists say that, given the social and economic realities of present-day society, new laws will be needed to fully guarantee the privacy of genetic information, prevent genetic discrimination, and ensure employability and insurance coverage for carriers of genetic-disease genes. "As it is right now, people who are at risk for Huntington's disease or at risk for breast cancer cannot get insurance," observes Nancy S. Wexler, a professor of clinical neuropsychology at Columbia University's College of Physicians and Surgeons. "And that's perfectly legal in our culture. [Insurance companies] are companies that make money, and you don't make money on people who are sick. "So, both scientists and ethicists are realizing that some of the fixes are going to have to be legal. Some of the protections may have to be [put in place by] changing the laws." Earlier ethical debates, such as those surrounding appropriate use of human subjects in experimentation, have resulted in far-reaching new laws, such as the 1974 National Research Act, which created institutional review boards (IRBs). "I don't think anybody would have [willingly] invented and imposed on themselves institutional review boards," comments Arthur Caplan, director of the Center for Bioethics in the University of Pennsylvania Medical Center. IRBs, while they have been effective in forcing researchers to include ethical considerations in their protocols, have also represented a cumbersome, sometimes costly hurdle for proposed experiments, both ethicists and scientists say. "And researchers are not always very happy with that hurdle," notes Ronald M. Green, a professor of religion and director of the Ethics Institute at Dartmouth College. "They would rather get right on with their research, and all the restrictions make that more difficult. It can frequently be tense, because a whole research protocol can be stalemated by the ethical objections raised by members of an IRB, on which the ethicist present has a disproportionately large role. The community members and the scientists [on the IRB] might more frequently go along with a protocol that has ethical problems than the ethicist will." Green recalls a recent IRB meeting at Dartmouth, for example, in which he found himself the odd man out in a proposal review: "We had a protocol in which a drug was being used for an immune-related disease, and the function of the drug was to suppress the immune system. It was a deliberate suppression of the immune system. And nobody in this particular case picked that up as an item that should be mentioned in the informed consent [form], that individuals who would be participating in the trial might suffer the consequences of a suppressed immune system, beyond those that were deliberately intended. "It was a vivid moment for me, one where the scientists' acceptance of assumptions was not something the ethicist shared. And the lay members from the community didn't have enough expertise to even perceive the issue, initially." Because of their capacity to put in place structured approaches to difficult ethical problems, lawyers and legislators will continue to play pivotal roles in translating bioethical debate into changes in the way society makes use of science findings and in how researchers conduct their experiments, according to scientists and ethicists. "Lawyers play an absolutely key role," Wexler says. -F.H. (The Scientist, Vol:9, #19, pg.8 , October 2, 1995) (Copyright © The Scientist, Inc.)

The Rule Of Law

Interested in reading more?

Become a Member of