NOT-OD-14-124: NIH Genomic Data Sharing Policy

"NIH announces the final Genomic Data Sharing (GDS) Policy, which sets forth expectations that ensure the broad and responsible sharing of genomic research data.  Sharing research data supports the NIH mission and is essential to facilitate the translation of research results into knowledge, products, and procedures that improve human health.  NIH has longstanding policies to make a broad range of research data, in addition to genomic data, publicly available in a timely manner from the research activities that it funds.2,3,4,5,6   NIH published the Draft NIH Genomic Data Sharing Policy Request for Public Comments in the Federal Register on September 20, 2013,7 and the NIH Guide for Grants and Contracts on September 27, 2013,8 for a 60-day public comment period that ended November 20, 2013.  NIH also used websites, listservs, and social media to disseminate the request for comments.  On November 6, 2013, during the comment period, NIH held a public webinar on the draft GDS Policy that was attended by nearly 200 people and included a question and answer session.9  NIH received a total of 107 public comments on the draft GDS Policy.  Comments were submitted by individuals, organizations, and entities affiliated with academic institutions, professional and scientific societies, disease and patient advocacy groups, research organizations, industry and commercial organizations, tribal organizations, state public health agencies, and private clinical practices.  The public comments have been posted on the NIH GDS website.10  Comments were supportive of the principles of sharing data to advance research.  However, there were a number of questions and concerns, and calls for clarification about specific aspects of the draft Policy.  A summary of comments, organized by corresponding sections of the GDS Policy, is provided below."