NIH Yanks Genetic Databases From the Web, Citing Privacy Worries

By Eliza Strickland | September 2, 2008 12:35 pm

genetic codeA new method to identify an individual’s genetic profile from a larger pool of genetic data could be a boon for forensic science, but is causing headaches for the National Institutes of Health. In response to a study describing the technique, the NIH quickly removed several publicly available databases of DNA information drawn from medical studies, citing concerns that patients’ privacy could be threatened.

The new type of DNA analysis could only identify an individual if that person’s genetic profile was already known. Such a confirmation could reveal patients’ participation in a study about a specific medical condition, denying them their presumed confidentiality, experts said [Los Angeles Times]. NIH officials say they took down the databases, which contained genetic data from more than 60,000 patients, as a precautionary measure, and say it’s unlikely that the privacy of any of those patients has been violated.

The databases were part of the NIH’s drive to encourage researchers to freely share genetic data from large-scale studies. Researchers hunting for disease genes will scan the genomes of many people with and without, say, cancer, combing through a pool of hundreds of thousands of DNA variants. These studies frequently combine DNA from hundreds of individuals to try to discern patterns of inheritance in a population–what percentage carry a version of a gene that might predispose to heart attacks, for example, and what percentage carry another, less harmful version [ScienceNOW Daily News]. The new analysis technique allows someone who has an individual’s genome to search the pooled data for that person’s information.

However, the new technique, described in the journal PLoS Genetics, does have beneficial applications; researchers say it could be used in forensic investigations where police need to determine whether one individual’s DNA is present in a sample that contains genetic material from many different people. Lead researcher David Craig suggests that the technique might find use in high-profile missing-persons cases…. In such investigations, he says, it might reveal whether the person had been present in a particular location, from DNA left behind on surfaces they touched [New Scientist].

Image: flickr/Gaetan Lee

CATEGORIZED UNDER: Health & Medicine

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