Privacy Law

Anonymous DNA study volunteers identified with online sleuthing; consent form covered possibility


Volunteers participating in the 1000 Genomes Project signed a consent form saying the researchers could not guarantee their privacy. At the time, the risk appeared remote, according to the director of a government entity that that helps fund and direct the project.

Not any more. “We are in what I call an awareness moment,” Eric Green told the New York Times. Green is director of the National Human Genome Research Institute for the National Institutes of Health.

The 1000 Genomes Project posts genetic information of unnamed volunteers online that is used by disease researchers around the world, according to an October press release. But the Times explains how genetics researcher Yaniv Erlich was able to plug 1000 Genomes information from five people into genealogy websites to find their identities. The genealogy websites collect genetic information from men who want to track down ancestors and relatives.

The Times explains Erlich’s sleuthing in one instance. He submitted part of the genetic information from a 1000 Genomes volunteer to a genealogy database and found the names of the maternal and paternal grandfathers. A Google search produced an obituary that helped the researcher put together a family tree and identify the test subject.

The 1000 Genomes Project originally included ages along with the online genetic information; the ages have since been removed, making identification more difficult, the Times says. The project also identified the regions where the test subject lived, which also helped Erlich in his sleuthing.

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