NIH Issues Genomic Data Sharing Rules

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

By | August 28, 2014

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) policy announced 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 in Nature 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.

A two-tiered access system that helps ensure that such data is used in a controlled manner was part of the previous GWAS data policy, and will continue under the new GDS guidelines. Researchers who receive NIH funding after January 25, 2015, must follow the new policy, which requires that they obtain informed consent from study participants so that their de-identified data can be used either for future studies or broader sharing. Similar rules apply to clinical specimens and cell line information.

“Everyone is eager to see the incredible deluge of molecular discoveries about disease translated into prevention, diagnostics, and therapeutics for patients,” Kathy Hudson, NIH deputy director for science, outreach and policy, said in a press release. “The collective knowledge achieved through data sharing benefits researchers and patients alike, but it must be done carefully.”


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