CHICAGO (GenomeWeb) – The US National Institutes of Health is proposing loosening restrictions on researchers' access to genomic summary results. The agency announced today that it was soliciting comments on a planned update to the NIH Genomic Data Sharing Policy that guides data management of summary results.
"This update would allow GSR from most studies to be provided via a public, rapid-access model. GSR from sensitive studies would remain in controlled-access," according to a blog post coauthored by Carrie Wolinetz, acting NIH chief of staff and associate director for science policy, and National Human Genome Research Institute Director Eric Green.
The agency has required access controls on most genomic summary results since 2008. However, a workshop the NIH 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.
"Based on the recommendations from the workshops and public comments received through the RFI, NIH has come to realize that many stakeholders believe that there is little risk when GSR are maintained through unrestricted access (i.e., in an open and public way)," Wolinetz and Green wrote. "However, they also suggested that additional protections should be in place for sensitive studies where there might be additional concerns, such as studies that include populations from isolated geographic areas or with rare or stigmatizing traits."