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California Legislation Seeks to Bar UC Berkeley's Genetic Testing Plans


Originally published July 12.

By Turna Ray

Legislation pending in the California State Senate that seeks to restrict the University of California from broadly providing genetic testing to its students hasn't hindered the public institution from offering the testing to incoming freshmen at its Berkeley campus. However, if the legislation passes, it would certainly impact the institution's funding prospects.

The proposed bill, AB 70, introduced on June 24, would prohibit the UC system from "making an unsolicited request to an enrolled or prospective student … for a DNA sample for the purpose of genetic testing," though it would not bar health care providers in university facilities from performing genetic testing in the course of medical care.

"We have provided answers to an array of specific questions posed by committee staff who are working on AB 70," Mark Schlissel, UC Berkeley's dean of biological sciences, told Pharmacogenomics Reporter this week. "Personally, I do not believe that the State Legislature should be considering bills that would dictate aspects of the curriculum at its university system."

UC Berkeley in May announced plans to launch a voluntary program this fall that will test students in the Class of 2014 for three genes involved in the metabolization of alcohol, lactose, and folates (PGx Reporter 05/25/10).

Bob Sanders from UC Berkeley's Office of Media Relations added that the university has not taken an official position on the legislation "pending further analysis."

However, Sanders held that the the univeristy on the whole "views this bill as attempting to influence the core function of a public University, [where] academic curriculum and research programs [should be] independent of political influence.

"This would, we believe, infringe on academic freedom and politicize research," Sanders said, adding that the university has communicated its concerns to the staff of state assemblyman Chris Norby, who authored the bill.

According to Schlissel, the university will not halt plans to offer genetic testing to incoming freshmen as part of its "On the Same Page" program. However, if passed, AB 70 would make it difficult for the university to offer similar programs in the future and could even penalize UC Berkeley for offering genetic testing to its students this coming fall by cutting state funding. According to a UC report, the state of California contributes $3.3 billion, a little over 3 percent of its annual budget, to the university.

The legislation, introduced by Norby, a republican assemblyman representing California's 72nd district, would require the University of California to report to the comptroller, governor, and the state legislature by Jan. 1, 2011, the amount of money it spent before this date on "unsolicited requests" to current or prospective students, asking them to submit a biological sample for genetic testing.

An amount equal to the dollar figure reported would then be cut from the university's funding from the state. UC Berkeley's genetic testing effort is estimated to cost around $50,000, which comes from an anonymous donor.

The University of California would have to submit these reports on a quarterly basis until the provisions of the legislation are slated to expire on Jan. 1, 2015.

"Certainly as the bill is currently drafted," the the possibility that the state would cut funding for UC Berkeley based on its genetic testing program, "is a concern," Sanders said. "But at the moment we can only speculate about the impact because so many factors remain undetermined. It is highly unusual to advance a completely new legislative proposal in the few remaining weeks of a two-year legislative session," he added.

Although the proposed bill seeks to restrict UC Berkeley from promoting any genetic testing program broadly to its students, it does not bar the university from offering students medical genetic testing. The new provisions of the bill that would be added to the Donahoe Higher Education Act "would specify that it does not prohibit a licensed health care provider in a university facility from performing genetic testing and counseling in the course of a patient's medical care," AB 70 notes.

In laying out the reasoning for these provisions, the assembly cites concerns about UC Berkeley's ability to protect students' privacy; to ensure that students don't feel pressured to participate in the project; and to provide useful data following testing.

The assembly points out that it is been shown to be possible for third parties to identify study subjects from deidentified genetic data. This type of breach in privacy could have implications for the student down the line. "A student who voluntarily provides DNA to a public institution of higher education could suffer consequences later in life, if some future occurrence causes the confidentiality of the DNA sample to be compromised in some manner," the assembly warns.

UC Berkeley has said that it is offering voluntary genetic testing for freshmen as part of its "On the Same Page" program in order to engage students in a thought experiment. As part of the freshman program this year, students will have the chance for a hands-on experience with genetic testing as a launching pad for discussion on personalized medicine. The university has assured that it will keep private the genetic data of students who participate in the project. Students who choose not to get genetically tested will still be able to participate in lectures and debates on the issue.

However, since UC Berkeley's offer for genetic testing will go out to all 5,500 incoming freshmen and new transfers, the assembly fears that this may put undue pressure on some students to participate in the genetic testing portion of the project. "Universities design programs to engage the student body and encourage broad participation, and students may feel coerced to participate in official activities involving widespread genetic testing," the assembly notes in AB 70.

Then there is the question of clinical utility. The assembly is particularly troubled that UC Berkeley is offering testing for nutrition-related markers. They point to a 2006 report by the Government Accountability Office that found genetic testing to inform dietary and nutritional choices "are medically unproven," and could potentially "mislead consumers" without providing "meaningful information."

While UC Berkeley's genetic testing program is meant to inform students about the rapidly evolving field of genetics and medicine and the information page about the effort discusses how this data might impact students' healthcare decisions, the university currently has no plans to conduct an outcomes study to see if genetic data collected through the program was actually used by students to change their lifestyle.

Finally, the assembly asserts that the risk of a security breach is a real worry, since no secure system, no matter how many checks are in place, is foolproof. "For example, in May 2009, a hacking attack at UC Berkeley compromised the security of the medical information of approximately 100,000 current and former students," the assembly points out.

This proposed legislation stands to impact the university's funding during a time when the state has already cut funding for the university's core academic programs, resulting in large hikes in student fees. According to reports, undergraduate student fees rose 90 percent from 2003 to 2007.

By comparison, Stanford University, a private California institution that is also launching a voluntary genetic testing program as part of a summer elective course, will not be restricted by AB 70. Not long after UC Berkeley announced its genetic testing plans, Stanford University announced it will also begin offering its MD/PhD students the opportunity to learn about genomic medicine from their own genotype data as part of new elective course being offered during the summer quarter beginning June 21.

However, in a measure to ensure that students don't feel pressured to participate in the genetic testing aspects of the elective, Stanford students who wish to be genetically tested will have to contribute a portion of the testing cost, which will be subsidized by the university (PGx Reporter 06/09/10).

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