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Campus DNA Testing Program Will Not Release Individual Results

[Quotes CGS's Jesse Reynolds]

by Emma AndersonThe Daily Cal
August 12th, 2010

UC Berkeley's controversial plan to test incoming freshman's DNA will no longer give provide individual students with their results, but will otherwise continue as planned after a decision Wednesday by the state Department of Public Health.

The campus announced its decision to alter the plan Thursday after the department said the campus should have gotten a physician's approval before collecting samples and must use federal and state approved labs for the testing, arguing that students could use the results to make health decisions.

As part of the campus College of Letters and Science annual "On the Same Page" program, incoming students were sent DNA collection kits, allowing them to submit anonymous samples for testing with the understanding that they would later receive their personal test results confidentially. With the campus decision, the data collected will now only be presented in an aggregated, statistical form and samples will be destroyed after analysis.

Federal Clinical Laboratory Improvement Amendments and the California Business and Professions Code mandate that medical diagnostic testing must be performed in approved labs in order to ensure results given to people making health decisions - either for themselves or for patients - are accurate.

The UC had argued that because the testing would be for educational purposes and because the three genetic variants to be tested - ability to metabolize alcohol, tolerate lactose and absorb folic acid - are not disease related, the campus program would fall under an exception to such federal and state regulations.

The department told the campus that they were providing students with information that could affect their own diagnosis and treatment of disease or the evaluation of their personal health. Dean of Biological Sciences Mark Schlissel said he was disappointed with the department's interpretation of the laws.

"We do disagree with the California Department of Public Health, but we obviously respect their authority under the law to offer us this opinion and we won't violate the law," he said.

Campus genetics professor Jasper Rine said during a press conference Thursday that the campus had looked at about 12 different labs that would meet standards, but was unable to find one in time for the coming semester that would only test for the three genetic variants. Schlissel said even if the campus had been able to find a suitable lab, they still would not be able to conduct the individual analyses because the department also said the testing should have been approved by a physician before students were allowed to submit their DNA samples.

Analysis of the samples will be conducted at UC Berkeley's School of Public Health, all samples will be destroyed after analysis and only the aggregate data will be presented. Rine said though he had thought about using the program and the data collected in a publication about the educational process of the program, he is no longer considering this as an option.

About 700 incoming students to the College of Letters and Sciences have submitted samples out of the 5,000 who were sent DNA collection kits, and officials said they expect to receive 1,000 samples total by the end of this week when the campus will stop accepting them. The campus will now begin to notify all students who were sent the kits of the changes to the program.

Jessica Wan, an incoming freshman to the College of Letters and Science from Fremont, Calif, said she only received the DNA packet in the mail this week and was still considering sending in a sample, but now that the she will not be able to learn her personal information, participating in the program is not one of her "high priorities."

"I think it is unnecessary for (the state) to take it to that sort of level, especially since this information is something that you already know, for the most part," she said. "Since it's not even personal anymore ... it definitely won't be as informative."

Seminars and panel discussions that were scheduled for the fall semester to coincide with the data collection will still be held and the campus has invited the director of the state department, Mark Horton, to join one of the scheduled panels to add his perspective on the topic.

Rine said though the original plans for the program will not be realized, he is "thrilled" that he was able to be a part of something that challenged every student who opened the testing kits to decide for themselves whether they should participate in something so complex.

"Most of the benefit of this program has already been had because every single student that opened an envelope had to make the judgement for themselves 'do i want to subject myself to genetic testing,'" he said. "That's a really important lesson because the first thing they encounter, with respect to Berkeley, is that really smart well trained people can reach different decisions based upon the same information."

And the program has certainly stimulated thought and debate about the topic of DNA testing among more than just students. Controversy has buzzed across the country since the program was announced about the legal and ethical questions it poses - many of which were hashed out during a three-hour hearing before the State Assembly's Committee on Higher Education. Chris Norby, R-Fullerton, authored a bill that would restrict or regulate such programs at CSUs and UCs, but this bill was struck down by the Legislature Wednesday.

The Berkeley-based Center for Genetics and Society, one of the organizations that have criticized the program, has said they "applaud" the state department's decision, though some concerns remain.

"I wish the situation would not have existed in the first place," said Jesse Reynolds, the center's director. "The cancellation of the program was the best step by the university in getting out of a mess it got itself into."

Javier Panzar of The Daily Californian contributed to this report.

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