Skip to main content
Premium Trial:

Request an Annual Quote

NIH Seeks Additional Comments on Genomic Data Sharing Policy

CHICAGO (GenomeWeb) – The National Institutes of Health has reopened the public comment period on a proposed update to the NIH Genomic Data Sharing Policy that guides data management of genomic summary results from research studies. The 15-day extension started yesterday and runs through Dec. 12.

The NIH previously took comments on the plan in September and October, but now wants additional input.

Since 2008, the NIH has required access controls on most genomic summary results. However, a workshop the agency convened last year and a subsequent public request for information this year changed officials' thinking on the risks and benefits of allowing different levels of access to such summaries.

"NIH has been evaluating the best way for researchers to access genomic summary results (GSR), which, as the name implies, are 'aggregated' summary statistics from all participants in a genomic research study or set of studies," National Human Genome Research Institute Director Eric Green noted in a September blog post. "GSR have an important distinction from some other types of genomic research data," according to an NIH blog post from September. "This is because GSR do not include individual-level information, in contrast to individual genome sequences."

In its original request for comments in September, the agency added, "To promote broad sharing of genomic summary results from most research studies with data held in an NIH-designated data repository, NIH proposes for such access to be made through a new 'rapid access' tier. Rapid access will enable access to appropriate genomic summary results after interested users affirm agreement with a statement regarding responsible data use."

Comments are being accepted via this NIH web page for the next two weeks.

The agency last updated its GDS policy in August 2014 under the Obama administration.