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.
Personal gene testing has emerged as an increasingly controversial field. Medical ethicists criticized the Berkeley program, saying that students would feel pressured to submit saliva and wouldn’t know how to assess the results. Federal regulators, in a series of actions this year, have told makers of personalized gene test kits offered directly to consumers that the products must be approved before sale.
“It’s a shame that we were not allowed to provide students with their personalized results, which would have made this a one-of-a-kind experience for incoming students,” said Schlissel, a professor of immunology and pathogenesis.
Under UC’s program, incoming first-year and transfer students were sent vials and encouraged to spit in them and return them. Their DNA was to be tested to find genes that affect how the body metabolizes milk, alcohol and folic acid, a vitamin. These genes were chosen because they don’t have vital health significance that would lead students to take medical action, Schlissel said.
The program, dubbed “Bring Your Genes to Cal,” was intended to spur discussion in classes while exposing students to the cutting-edge field of genomics as part of an annual exploration for incoming students on topics of interest, Schlissel said.
“We thought it would be a great topic of conversation on an emerging issue,” he said.
So far, about 700 of more than 5,000 incoming students have submitted saliva, Schlissel said.
“Despite the announcement by the university we still have very serious concerns about the privacy of the DNA as well as the data being derived from those samples,” said Jeremy Gruber, president of the Council for Responsible Genetics, a Cambridge, Massachusetts-based group concerned with the consequences of gene-based technology.
“There was a complete lack of appropriate informed consent and we continue to have very serious concerns about this program,” Gruber said in a telephone interview.
California legislators held a hearing on Aug. 10 about the genetic-testing program, and a bill was introduced to stop it.
The program has already had a benefit by getting students to grapple with a difficult issue, said Jasper Rine, a professor of genetics, genomics and development who spearheaded the program.
“Every single student had to make a decision: Do I want to submit my genetic information or do I not,” Rine said during the conference call. “That is a life lesson I am happy to teach.”
While educational experiences for students are a good thing, the main lesson here “was for the Berkeley administrators and for other universities thinking about doing something similar,” said Hank Greely, a Stanford University law professor focused on medical ethics.
“Their goal was good but they hadn’t thought through sufficiently all the problems of implementing this in a safe and ethical way,” Greely said.
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