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Medical ethics program branches out

April 19, 2000 By

Should the benefits of high-end medical technology be made available to everyone – regardless of cost? Should human genes be synthesized and sold to pharmaceutical companies for research? How should medical researchers studying minority groups responsibly report their findings?

These are the kinds of ethically charged questions that give medical researchers and administrators grade-A headaches. For Robert Streiffer and Pilar Ossorio, the two newest members of the Medical School‘s program in medical ethics, they’re bread and butter.

Pilar Ossoria
Ossorio

Robert Streiffer
Streiffer

Like a pair of modern-day Ariadnes, Streiffer and Ossorio use their expertise in philosophy, law and science to guide medical researchers and policy-makers through a labyrinth of sticky ethical issues. Streiffer has been a junior faculty member of the philosophy department since last September; Ossorio arrived in January. Both split their appointments between the Medical School and other departments.

Director Norman Fost says their addition to an already stellar staff diversifies the 27-year-old program in medical ethics in several important ways. Streiffer was recruited to the program at the request of the state Legislature to explore emerging ethical issues in biotechnology, such as the use of bovine growth hormone. Ossorio, meanwhile, brings not only an expertise in ethical issues related to race and ethnicity, but also in intellectual property law. The latter skill will come in especially handy as the university examines questions surrounding the patenting of human gene lines for research purposes. These topics and others will be brought into sharper focus May 4-5 when the university hosts a meeting of the National Bioethics Advisory Commission.

Ossorio holds a Ph.D. in microbiology and immunology from Stanford and a J.D. from the University of California at Berkeley. Her appointment is split between the Medical School and the Center for the Study of Race and Ethnicity in Medicine.

Ossorio’s particular interest is the ethics of biomedical research. “I’m a useful person to include in working groups on a variety of ethical issues because my training in law, science and ethics allows me to evaluate many different kinds of claims,” Ossorio says.

“I try to unify my disparate projects by constantly referring back to certain overarching theoretical issues, such as what counts as a harm or a benefit, and how do we conceive of or achieve justice in a very stratified society.”

To illustrate her point, Ossorio cites a real-world example: A geneticist may find statistically significant variations in a variable associated with a propensity to develop alcoholism. The hitch? The study is being conducted among Native American populations in North and Central America.

The ethical problem is in reporting the data. “When your report is “translated’ into the popular press and talk-show discourse, there’s a substantial danger that the nuance and context will be lost. Your claims may be reduced to something like “Navajos are likely to be alcoholics.’ The question of how to make scientific claims about human population groups without perpetuating stereotypes is an ethical problem – although not the kind of problem that has received much attention in the biomedical or bioethics literature until recently.”

Ossorio believes scientists have “an ethical obligation” to examine the underlying assumptions they may hold about race and ethnicity, assumptions that strongly influence the questions they do (and don’t) ask, as well as how they ask them. These assumptions, in turn, strongly influence the ways results are interpreted and the way data are reported.

Ossorio’s ethical and legal skills will be brought to bear on another ethically charged topic: genetic testing. At the moment, most genetic testing is done by biotech labs that receive blood samples from customers, so there’s no concrete product liability under the law. As the current system gives rise to genetic testing kits, however, the landscape will change dramatically – and again, race and ethnicity will play a factor. “Depending on the genetic mutations you’re testing for, a person’s ancestry can make a significant difference in the rate of false-positive and false-negative results,” Ossorio says. “A company could have liability for not labeling the test in such a way that the doctor can understand and clearly and accurately communicate results to a patient.”

Streiffer, a recent grad of the Massachusetts Institute of Technology’s top-notch philosophy program, almost decided to specialize in the philosophy of language before the twin siren songs of ethical theory and public policy steered his career down a different path. Streiffer, who believes morality of an action isn’t always determined by its consequences, strives to bring a balanced approach to his duties as a professor and member of the UW Hospital’s Ethics Advisory Committee.

“Unfortunately, a lot of the modern policy debate has a utilitarian bent to it,” he says. “Ethics isn’t just subjective. You can argue about these issues rationally, and the level of debate doesn’t have to be low.”

In addition to teaching a graduate seminar in ethics in the philosophy department, Streiffer has already lectured on ethical issues of euthanasia and access to medical technology. Soon, Streiffer will join the university’s bioethics advisory committee, which is gearing up to wrestle with the topic of UW Hospital’s budding xenotransplant program, in which tissues from one species are put into another species.

His biggest challenge, however, will be developing a course on ethical issues derived from biotechnology. “I’m still trying to learn the science,” he admits. “But it will be fun to take political philosophy and apply it to actual cases to see what happens.”

Neither Streiffer nor Ossorio expects to find easy answers to any of the ethical conundrums they’ll be tangling with, from genetic testing to genetically engineered foods. One thing is clear: There’ll be no shortage of work to keep them busy.

Tags: research