Campus's DNA Testing Scrutinized at Hearing

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Hearing in Sacramento over DNA Testing

Assistant News Editor Emma Anderson attended a hearing in Sacramento on August 10 about the issues surrounding this year's genetic sampling of incoming freshman for the On The Same Page program put on by the College of Letters and Sciences.

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SACRAMENTO - Some called it poorly conceived. Others noted the "benign" nature of the genes being studied. But most at Tuesday's hearing before members of the State Assembly regarding UC Berkeley's student DNA testing program agreed the campus should have thought through the program's implications more thoroughly.

The hearing, held by the Assembly's Committee on Higher Education, spanned three hours and allowed experts and academics to present issues that ranged from understanding the origins of this year's On the Same Page program, to the legal and ethical implications of the program, which allows incoming students to the College of Letters and Science to submit samples of their DNA for analysis.

The program has spurred heated debates across the country since it was announced in May. The vice chair of the committee, Chris Norby, R-Fullerton, authored a bill in response to the program that, if passed, would prohibit CSUs from collecting their students' DNA, urge the UC to do the same and require the UC to file quarterly reports on the total costs of any programs that request students submit samples of their DNA for genetic testing.

Though many speakers Tuesday acknowledged they did not think the campus had ill intentions when implementing the program, most questioned whether samples could remain confidential, whether incoming students would be able to understand the ethical and legal implications of genetic testing and why the program still left things "yet to be determined."

By the meeting's end, most speakers, including program organizers, agreed that the campus could have gone about organizing the program differently.

"I'm proud of the fact that our program has improved by processing the criticism that we've obtained," said Mark Schlissel, dean of biological sciences. "None of us in society get things right the very first time, and I'm perfectly comfortable admitting that our initial iteration of this program was not the perfect ... solution to how to inform students."

"The world at large is going to learn about what we do, is going to improve on what we do," he said.

Students were sent two bar codes in their DNA collecting packets; one to keep and one to be attached to the sample. No record is to be kept linking samples to students.

"In our opinion, controlling who has access to your genome is very important," said Jasper Rine, a UC Berkeley professor of genetics, at the meeting.

Consent forms requiring student signatures, as well as parent signatures for minors, were included in the packet with information on genetic testing.

Many speakers Tuesday questioned how the campus would be able to ensure information would remain private. Because packets sent back will include both the consent form with students' signatures and the anonymous barcodes, some pointed out that whoever opens the packets would be able to connect the students to their samples.

Others speculated that the information collected could be hacked. In 2009, the personal information of more than 160,000 people was stolen from the University Health Services' databases.

But Schlissel and Rine assured the committee that information provided by the "innocuous" genetic variants being tested - the ability to tolerate alcohol, metabolize lactose and absorb folic acid - could not be used to identify individuals, as they are just three of some three million variants among human genomes.

"Even if the information were hacked, I am confident as a scientist that none of the data would be identifiable," Schlissel said.

Though the campus has said the samples will be destroyed once they have been analyzed, no plans have been made for what will become of the data. Some at the meeting asserted that the data, too, should be destroyed, for fear that it could be used for other purposes. Chair of the committee Marty Block, D-San Diego, said the fact that the campus has not decided what it will do with the data is "troubling."

Schlissel and Rine said data could be used for a publication on the educational process of the program, but will not be used for scientific research.

Hank Greely, director of the Center for Law and the Biosciences at Stanford University, compared UC Berkeley's program to a similar genetic testing program for medical students at Stanford that he has objected to. He said there is a risk, in both programs, that students might misinterpret their test results and make misinformed health decisions.

The age and level of experience of incoming freshmen was a general concern among the speakers. Regarding the legal and ethical issues posed by genetic testing, Lee Tien, a senior staff attorney with the Electronic Frontier Foundation said such "naive" participants could feel coerced or pressured to participate in testing they do not fully understand. Many suggested delaying the start of the program until students could be better educated about DNA collection.

The Department of Public Health must determine whether the campus program meets federal Clinical Laboratory Improvement Amendments standards. Schlissel said because the testing will not provide students with medical diagnoses, the program falls under an exception to the law and does not require a clinical laboratory.

If the department decides the testing must be done in a clinical lab, program directors will have to secure one, but Schlissel said this may be difficult given the short notice and the rapidly approaching fall semester. If they are unable to find such a lab, he said they will either choose to throw out all the samples or conduct the analyses in an aggregate manner, without giving individual students their results.

Regardless of the results, Schlissel said the seminars planned to coincide with the program will continue.

"Perhaps if our plans are changed, that may be a topic of talks, whether an individual has the right to their genome or whether the state can control that," he said. "I'm still hopeful that we'll be able to do what we planned."


Emma Anderson is an assistant news editor. Contact her at [email protected]

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