Expanding the Impact of Genomic Data


Genomic research produces incredibly large amounts of valuable data, often more than one lab can feasibly interrogate. Every day, genomic sequencing costs decrease, and high-throughput technologies advance, allowing scientists to generate large-scale genomic data faster than before. Thus the sharing of these data not only is practical and efficient, it also maximizes the scientific potential of valuable data. This is why it’s important for you to know about the release of the final NIH Genomic Data Sharing Policy.

NIH has promoted data-sharing for many years. In January 2008, NIH implemented a policy to encourage the sharing of data from NIH-funded genome-wide association studies (GWAS) – studies across the entire human genome to find genetic variations associated with a particular disease – so that this anonymized, large-scale data could be made freely available to scientists on a controlled access basis. NIH hosts several data repositories such as dbGaP, and is promoting training in big data and several other very important initiatives to capitalize on large-scale data.

Last year NIH announced a draft policy on genomic data sharing, which would expand data-sharing expectations to all large-scale human and non-human genomic data generated by NIH-supported research, while assuring the protection of human genomic data. We opened this policy up to public comment, hosted a public webinar for the community’s feedback, and have spent the past year taking your comments into consideration and refining the policy with your feedback in mind. And, today, NIH published the final NIH Genomic Data Sharing Policy.

To explain how this policy impacts you the extramural research community, my office has developed important implementation guidelines for grants that support research, such as research project grants (Rs) and program project grants (Ps). Applicants to these mechanisms are expected to state in their cover letter if their proposed research will generate large-scale human or non-human genomic data. If so, applicants are expected to include a genomic data sharing plan, and NIH will ask peer reviewers to comment on this plan, though it will not factor into the overall impact score for the project (unless specified otherwise in the funding opportunity announcement). This policy will take effect for competing grant applications submitted for due dates on or after January 25, so I encourage you to read and review the detailed implementation guidelines and the new Genomic Data Sharing Policy now.

NIH has consolidated a number of resources for your convenience on the NIH genomic data sharing website. I’d also encourage you to read the article by Paltoo et al., in Nature Genetics, “Data Use under the NIH GWAS Data Sharing Policy and Future Directions,” which describes the impact of the NIH GWAS policy. From 2007 to 2013, dbGaP provided 2,221 investigators access to 304 studies, resulting in 924 publications and significant scientific advances. It is our hope that the NIH Genomic Data Sharing Policy likewise yields successes through sharing genomic data. There are many benefits to sharing research data, and this new policy complements not only the existing GWAS policy, but other areas of focus in NIH’s science policies, such as the reproducibility of research results and creating a dialogue among the research community. Data sharing is an effective way to accelerate the rate of discovery, magnify the impact of NIH-supported research, and expedite translation of research results into interventions that improve human health. I’m sure we will all embrace this new policy as yet another way the biomedical research community works together to do what is best for science and the people we serve.

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