I blogged here a few months ago about UC Berkeley’s plan to do (voluntary) genetic testing on this year’s entire first-year class. (See: Genetic Testing and the College Freshman)
Now the university is backing down. Or rather, the university has been forced to back down by the California Department of Public Health. Here’s the story, by Rob Waters, writing for Bloomberg: UC Berkeley Backs Off Gene-Test Program for Students, Blocked by State
The University of California, Berkeley, won’t tell about 700 students the results of genetic tests performed on their saliva, after the state health department barred the institution from proceeding.
The state Department of Public Health views the tests as providing medical information and must, by law, be processed in certified laboratories, Mark Schlissel, the school’s dean of biological sciences, said today in a conference call. The results now will be analyzed collectively and the project will proceed as a research and educational effort, he said….
Regulatory issues aside, lots of people (mostly ethicists) expressed concern about the idea of testing the entire freshman class. As I noted in my previous blog posting on this topic, there were concerns about whether testing could be truly voluntary, and about whether students would be able to understand, on an individual level, the meaning of their test results.
For the most part, I agree with my colleagues who urged caution. I’m skeptical about such tests doing much good, and I’d rather see such testing done on smaller groups of students in a controlled way than on 1000s all at once. But — just to play devil’s advocate — it’s worth asking just what the risk here is. To put it bluntly, no one has ever died from genetic testing, as far as I know. For that matter, where are the horror stories of people’s lives torn apart by their test results? There is evidence that genetic tests can have interesting implications for family dynamics, in families with hereditary diseases. But aside from that, it’s not clear that anyone’s been hurt by a genetic test like the ones Berkeley was proposing. Compare: when Ralph Nader published Unsafe at Any Speed back in the mid-60s, calling for auto manufacturers to make their cars safer, he was able to point at statistics showing actual deaths — lots of them.
Now, again, I’m not a huge fan of personalized genomics. But if we’re going to debate particular cases, it’s worth putting it on the table: the tests may not be all that useful, but if we’re going to forbid them, we ought to be able to point to some actual dangers.
I think this is a knee jerk reaction to research in general. If it moves faster than a snails pace, people become afraid that the information can be used for something detrimental. It is a voluntary program for research, with no obvious financial benefit or motive, so what is the concern? Or is it enough to say I am concerned, but I have no idea what I’m concerned about?