Program Will Not Provide Individual DNA Results
Sunday, August 15, 2010
Category: News > University > Student Life
UC Berkeley's controversial plan to test incoming freshmen's DNA will no longer 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 at a press conference 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's annual "On the Same Page" program, incoming students were sent DNA collection kits, allowing them to submit samples for testing with the understanding that they would later receive their personal test results confidentially. With the campus decision, data collected will now only be presented in an aggregated, statistical form. 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.
California law states that labs that "perform clinical laboratory tests or examinations for research and teaching purposes only and do not report or use patient-specific results for the diagnosis, prevention, or treatment of any disease or impairment of, or for the assessment of the health of, an individual," are exempt from meeting laboratory standards.
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.
But the department told the campus the program would provide students with information that could affect their own evaluation or treatment 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 the campus had looked at about 12 different approved labs, but was unable to find one that would only test for the three genetic variants. Schlissel said even if they had found 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 submitted DNA.
Analysis of the samples will now be conducted at UC Berkeley's School of Public Health. Rine said though he had thought about using the program and the data collected in a publication about the educational process of the program, this is no longer an option.
About 700 incoming students had submitted samples as of Thursday, out of the 5,000 who were sent DNA kits. Officials said they expected to receive 1,000 samples total by the end of last week, when the campus said it would stop accepting them. The campus has begun notifying all students who were sent the kits of the changes.
Jessica Wan, an incoming freshman to the College of Letters and Science from Fremont, Calif., said Thursday she had just received the DNA packet 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 scheduled for the fall semester to coincide with the data collection will still be held. The campus has invited Mark Horton, director of the public health department, to join one of the panels to add his perspective on the topic.
Rine said though the original plans for the program will not be realized, he is "thrilled" he was able to be a part of something that challenged students to decide for themselves whether to participate in something so complex.
"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," he said.
And the program has certainly stimulated thought and debate about the topic of DNA testing among more people 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.
Emma Anderson is an assistant news editor. Contact her at [email protected]
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