NIH Issues Genomic Data Sharing Rules

Updated guidelines expand upon existing policy to include more kinds of data. 

FLICKR, YNSEGathering and sharing human genomic data is crucial to medical advances. But making such data available also raises concerns about participant privacy and consent.

A final Genomic Data Sharing (GDS) policyannounced by the National Institutes of Health (NIH) yesterday (August 27) replaces the current genome-wide association study (GWAS) data policy, which was instituted in 2007, expanding upon it to include more data types. “The increasing volume and complexity of genomic data creates an urgent need for alternative data management and analysis mechanisms,” the NIH policy-making team wrote inNature Genetics yesterday (August 27). Recent studies have also demonstrated that individual participants’ identities can be deduced from aggregate, anonymized data sets such as the 1,000 Genomes Project.

http://www.the-scientist.com//?articles.view/articleNo/40895/title/NIH-Issues-Genomic-Data-Sharing-Rules/