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Center for Genetics and Society, others previously raised concerns, called for the program’s halt

The Center for Genetics and Society applauded today’s cancellation of controversial plans by the University of California, Berkeley to offer individual genetic testing to incoming students as both an educational exercise and a scientific experiment. The University says its researchers will now use students’ genetic samples provided for aggregate analysis only, and will not provide individual results to students.

“This program was misconceived and hastily constructed from the beginning,” said Jesse Reynolds, a policy analyst at the Center. “We and others raised concerns about inadequate informed consent, potential breaches of privacy, and possible conflicts of interests. Many of these have been resolved by the fact that the incoming students will no longer receive individual genetic information. However, some matters remain. Regardless of its flaws, the original informed consent procedure was for a particular research project. The program is now different, and, at the very least, the university's institutional review board needs to revisit this issue.”

The change is the a consequence of the California Department of Public Health determining that the tests were medical in nature and thus required a certified laboratory, for which the university chose not to pay. That decision came a day after legislative hearings, held Tuesday in Sacramento, raised serious concerns about the program.

Previously, the Center and the Council for Responsible Genetics called for the program’s end. Consumer Watchdog, Generations Ahead, the Alliance for Humane Biotechnology, Privacy Rights Clearinghouse, and the World Privacy Forum endorsed a bill which would have requested the university to end it [PDF]. Other groups, including the American Civil Liberties Union of Northern California, the Electronic Frontier Foundation, and the Pro-Choice Alliance for Responsible Research signed letters to legislative leaders expressing significant concerns [PDF, PDF].

“This unfortunate episode should be a wake-up call to both policy makers and the general public that the development and use of new human genetic technologies cannot be left to the researchers alone,” added Richard Hayes, the Center’s executive director. “These technologies have potential for both great good and great harm. We need comprehensive public oversight policies to ensure that mistakes like this don’t happen again.”

The Center for Genetics and Society is a non-profit public affairs and policy advocacy organization working to encourage responsible uses and effective societal governance of human genetic and reproductive biotechnologies.

Contact:
Jesse Reynolds
1-510-625-0819 x308
jreynolds[AT]geneticsandsociety[DOT]org