NIH takes two OA DNA databases offline to protect patient privacy

Jason Felch, DNA databases blocked from the public, Los Angeles Times, August 29, 2008.  Excerpt:

The National Institutes of Health quietly blocked public access to [formerly OA] databases of patient DNA profiles after learning of a study that found the genetic information may not be as anonymous as previously believed….

Institute officials took the unusual step Monday and removed two databases on its public website. The databases contained the genetic information of more than 60,000 cooperating patients. Scientists began posting the information publicly eight months ago to help further medical research.

Creators of the databases had taken steps to mask the identities of the patients….However, the independent study released today reported that a new type of DNA analysis could confirm the identity of an individual in a pool of similarly masked data if that person’s genetic profile was already known….

"It’s possible, but the likelihood is quite low" that a patient’s privacy could have been violated, said Dr. Elizabeth Nable, head of the institute’s genetic oversight body, in an interview Thursday evening. "We wanted to err on the side of caution." …

Researchers favor public access to large pools of such data to speed the pace of medical innovation, but the privacy and public policy implications of such moves are still being understood.

Most patients in the databases signed consent forms after being promised their information would remain private….