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UC-Berkeley Drops Part Of DNA Testing Program

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UC-Berkeley Drops Part Of DNA Testing Program

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UC-Berkeley Drops Part Of DNA Testing Program

UC-Berkeley Drops Part Of DNA Testing Program

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The University of California at Berkeley wanted freshmen to participate in a genetic testing experiment by submitting a saliva sample. But the school is dropping part of the program to comply with state health regulations. Regulators informed the school that voluntary gene scans must be treated as medical diagnostic tests, if students are provided with individual results.

STEVE INSKEEP, host:

The University of California at Berkeley invited its incoming freshmen students to spit in a cup. That offer is now at the heart of a conflict in what's thought to be the largest genetic testing experiment at a U.S. university. State health officials have told the university it cannot move ahead with its plan to test incoming students for genetic differences. Sarah Varney from members station KQED has more.

SARAH VARNEY: Some 5,000 incoming freshmen received DNA sample kits earlier this summer. If students agreed to take part in the voluntary project, they mailed in a consent form and a sample of saliva. Berkeley intended to test the students' DNA for three genes involved in metabolizing milk, alcohol and folic acid.

UC Berkeley spokesperson Robert Sanders says the testing was part of a campus-wide effort to get students talking about genetic testing.

Mr. ROBERT SANDERS (UC Berkeley): We wanted to spark the interest of these students because whether they like it or not, their genetic information is going to be used in their medical treatment in their future and that future is only a few years away.

VARNEY: Berkeley's plan to give students individual test results was ill-conceived. That's according Hank Greely, director of Stanford University's Center for Law and the Biosciences. Greely says even though the genes being tested aren't related to any serious diseases, like Alzheimer's or breast cancer, students could easily misinterpret the results.

Mr. HANK GREELY (Director, Stanford University, Center for Law and Biosciences): So I would worry that, for example, one of the students getting a gene test telling him he has the, quote, "normal," close quote, variation for alcohol would decide that meant he could drink a lot.

VARNEY: Supporters of UC Berkeley's testing effort say those questions would have been debated on campus during several scheduled lectures. But after state lawmakers and a chorus of bioethicists raised concerns that the program violated student privacy, the California Department of Public Health began its own inquiry.

Yesterday, state officials told Berkeley a physician would need to order the tests for each student, and a federally certified lab would have to analyze the samples. Mark Schlissel, dean of biological sciences at UC Berkeley, disagrees the project amounts to medical testing.

Mr. MARK SCHLISSEL (Dean of Biological Sciences, UC Berkeley): In our case, we're doing a research educational program that we believe is exempt from that level of government oversight. We're not charging students for this test. We're not advising them in a medical sense on how to act upon this information.

VARNEY: The University has asked the state for a legal ruling to back up their decision, and the state has yet to issue a public statement. Aside from a host of disappointed scientists, some students were also let down by the news. Instead of receiving their individual test results, students will now only see aggregated data for their class.

Mr. DAVID KAUFMAN (Incoming Freshman, UC Berkeley): It's cool that we'll at least find that out, but it's still a bummer.

VARNEY: David Kaufman is an incoming freshman who is spending his last weeks of summer jet skiing on Lake Tahoe. He sent in his spit sample several weeks ago, and though he's generally uninterested in science, the project intrigued him.

Mr. KAUFMAN: I would think the Department of Health would have more important things to do than legislate whether a school can do a voluntary testing.

VARNEY: The students' age may have played a role in the added attention, says Jesse Reynolds. He's a policy analyst at the Center for Genetics and Society, a non-profit public affairs group. Still, Reynolds says when it comes to genetic testing, it's difficult to sort out what's scientific research and what's simply educational.

Mr. JESSE REYNOLDS (Center for Genetics and Society): This was an appropriate intervention. The state Department of Public Health did not tell UC Berkeley what they can and cannot teach. They said this is a medical test and you are conducting a medical test on thousands of young men and women without the involvement of a physician and without using an appropriately certified laboratory. These are not curriculum issues.

VARNEY: Although UC Berkeley will no longer provide students with individual test results, the campus-wide lectures will go on. Dean Schlissel says the lectures will focus more heavily on who should control genetic information -individuals, physicians or government agencies.

For NPR News, I'm Sarah Varney.

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