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Does Privacy Trump Research?

Nature's Helen Shen reports that California is considering passing a genetic privacy bill that many researchers say would have a detrimental effect on their ability to do their work. The bill, called the Genetic Information Privacy Act, would require that patients or study participants give individual written consent for the collection, analysis, and sharing of their genetic information, Shen says. The genetic information would have to be destroyed once the purposes written on the consent form are fulfilled. It aims to protect citizens from "surreptitious genetic testing," she adds.

But such a measure would restrict genomic research, says University of California, Davis geneticist David Segal. "He points out that scientists typically sequence DNA from thousands of people to discover genes associated with particular diseases," Shen says. "Under the proposed legislation, a large genomic dataset could not be re-used to study a different disease. Researchers would either need to destroy the data after each study, or track down thousands of former subjects for new authorizations." UC Davis has submitted a formal letter of complaint, saying that the bill — if passed — could add nearly $600,000 a year to the administrative costs of doing research, and that California's researchers could lose grants to researchers from other states.

The Scan

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Sleep-Related Variants Show Low Penetrance in Large Population Analysis

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