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Marin Voice: Student guinea pigs at Cal?

[Quotes CGS's Jesse Reynolds and Marcy Darnovsky]

[Opinion]


by Alan MillerThe Marin Independent Journal
August 23rd, 2010

FACULTY MEMBERS at major universities such as the University of California at Berkeley learn early on to be very cautious before using students as subjects in any kind of research project.

Human subjects committees and review boards have been established at Cal to protect the rights and welfare of all participants in research conducted by university personnel. Because of potential lapses in the oversight process, however, red flags fly whenever even seemingly justifiable research projects are proposed using large numbers of university students.

So it was that predictable furor arose when the university's College of Letters and Sciences mailed DNA cheek swab test kits to all 5,500 incoming fall semester freshmen and transfer students. The research, to be managed by the biology department, will run genetic tests on the swabs to discover the individual student's tolerance for alcohol, folic acid and lactose.

Although the appropriate human subjects committees on campus approved the project, a bioethics debate - on campus and nationally - quickly arose as the proposal became public.

Although the test results from the swabs would be known in theory only to the researchers and accessed by the student only by matching an individual private bar code to a second bar coded listing, criticism of the plan surfaced immediately.

Director Marcy Darnovsky of the Berkeley Center for Genetics and Society said "catalyzing discussion and debate about the future of genetic technology is a wonderful idea. But this is the wrong way to do it. This project could fuel common misperceptions about the importance of genetic information, and sets a bad precedent about the way genetic tests should be used."

Ironically, just before this mailing of the test kits, Walgreen's, the largest drugstore chain in the country, was forced to cancel plans to sell a similar DNA analysis kit. The Food and Drug Administration intervened, saying such tests may provide "contradictory and misleading results."

Jesse Reynolds, a policy analyst at the genetics center, noted that "If selling genetic tests directly to consumers is a problem in the eyes of federal regulators, how can the university justify pushing them on thousands of 18-year-olds?" Many bioethicists are concerned over the degree to which science should attempt to predict the medical future of a person. Do we really wish, as one observer queried, to "peek at what Mother Nature has scripted as our last chapter?"

Although the university has assured students that the tests will be voluntary and all data kept confidential, everyone understands that security breaches of computer data are not unusual. Even the best assurances do not guarantee that confidential data may not someday be leaked.

Assemblyman Chris Norby, R-Fullerton, introduced a revised Assembly Bill 70 to restrict the university from broadly providing genetic testing to its students.

The bill, introduced on June 24, would prohibit the UC system from "making an unsolicited request to an enrolled or prospective student for a DNA sample for the purpose of genetic testing." The university responded saying that it will continue the study and hopes that at least 1,000 students will return the kits. The university will own the data and will probably later publish results. The fact that such studies potentially have commercial value has raised another ethical issue for critics.

Noting that students might misinterpret results, Dr. Muin Khoury, director of the National Office of Public Health Genomics, said "I just worry about 18-year-old kids saying, 'Oh, I'm a fast metabolizer. I can drink a lot of alcohol and it won't affect me.'"

The best of plans do often go astray. Data from this study could be good for the university, but not end up serving the best interests of the students.

Alan Miller of San Rafael taught bioethics and environmental studies at UC Berkeley for many years.

 


 



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