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UC Berkeley drops plans to release personal genetic information to incoming freshmen

[Quotes CGS's Jesse Reynolds]

by Lisa KriegerSan Jose Mercury News
August 12th, 2010

The University of California Berkeley has dropped plans to release personal genetic information to incoming freshmen, following instruction by state officials.

The educational program, called "Bring Your Genes to Cal," came under fire by the California Department of Public Health because of state rules prohibiting gene testing outside a medical setting.

Health officials ruled Wednesday that the university could not proceed because it failed to obtain a physician's order for each student and process samples at a state-approved lab for analysis. The laws are designed to assure accuracy and quality of medical tests.

About 700 of the 5,500 incoming students have already sent in samples, on a voluntary and anonymous basis, to participate in what was intended to be a way to teach students about the growing role of genetics in daily life. In addition to the tests, it planned to provide lectures and discussions with ethicists, statisticians, biologists and philosophers about gene testing.

At a Thursday news conference, UC Berkeley professor of genetics Jasper Rine said that while the university still plans to analyze the DNA samples in a campus research lab, students who returned samples will not see their personal results.

Instead, there's a different lesson plan: The university will aggregate an anticipated 1,000 tests to obtain a general profile of the incoming class. While not statistically significant, it provides fodder for conversation -- and a starting point for greater debate over gene testing.

Like many college campuses, every fall Berkeley seeks to create a common intellectual experience for all incoming students. Usually, they read a selection of books.

But the gene-testing program, which aspired to involve students more directly, was unique, ambitious and instantly controversial. Some medical ethicists, such as Arthur Caplan of the Center for Bioethics at the University of Pennsylvania criticized the effort, saying counseling and support services should have been included. Others, such as George Annas of Boston University, feared that a test linked to alcohol metabolism could influence students' alcohol consumption.

In the first mass gene testing by a university, UC Berkeley asked students to submit saliva samples and the school promised to return their personal results of tests for three common genes that help control the body's responses to alcohol, dairy products and folic acid.

The decision not to tell the students their results was applauded by the Berkeley-based nonprofit Center for Genetics and Society, which opposed the project. "The move is in the best interests of the incoming students," said center policy analyst Jesse Reynolds. "As unfortunate as it is to change the program once already under way, it is a step away from a mess that the university got itself into."

The Department of Health Services did not return calls from the Mercury News.

The university said it selected those genes because they were "noncontroversial" and control "immutable traits," said Rine, the professor leading the project.

The genes do not predict the likelihood of disease -- so the university considered the exercise to be educational, not medical, he said. The university's Human Subjects Institutional Review Board approved the project.

Under the plan, the university was to perform testing on campus, but did not have information linking a sample to an individual student. The results were to be kept in a database that students had access to, but only if they knew a confidential code.

Because UC Berkeley did not request a physician's consent in the instructions to students, Rine said it is too late for the university to change the rules and comply with the state's requirements.

Furthermore, commercial labs are expensive and rarely agree to analyze merely three genes, he said. The university said it contacted 12 labs about possible testing.

On Tuesday, Rine and UC Berkeley dean of biological sciences Mark Schlissel addressed questions at a hearing held by the Assembly's Higher Education Committee. Also on Wednesday, the California State Senate Education Committee defeated a bill that would have restricted the university's right to ask students for DNA for educational purposes.

"We disagree with the interpretation of the law," Schlissel said. "We believe that education and research are exempt.

"But they had a different view, and believed that we were providing students with information that would affect the diagnosis and treatment of disease and evaluation of health," he said. "We were unable to change their minds.

"The unintended positive outcome," he added, is that it leads to new material to study: "Who has authority to tell an individual what they are allowed to know about themselves?"


SCRUTINY ELSEWHERE

UC Berkeley educators aren't the first people to receive state scrutiny regarding gene-testing services.

Two years ago, after receiving complaints from consumers, the California Department of Public Health sent cease-and-desist letters to 13 gene testing companies, including deCODE Genetics, 23andMe and Navigenics, asking them to stop doing business with California customers until they could prove they were complying with state laws. In California, only physicians may order lab tests, and all labs must obtain a state license and meet federal lab requirements.

Like UC Berkeley, these companies disagreed that they were providing medical advice; most say they are simply offering customers genetic information that already belongs to them.



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