NIH Issues Finalized Policy on Genomic Data Sharing
The National Institutes of Health (NIH) posted the final version of its Genomic Data Sharing (GDS) Policy in the United States Federal Register on 26 August 2014. Promoting data sharing to accelerate translation of data into knowledge, products, and procedures to improve health whilst protecting research participant privacy, the policy will apply to all NIH-funded, large-scale human and non-human projects that generate genomic data, starting with funding applications submitted for a 25 January 2015 receipt date.
A key tenet of the GDS policy is the expectation that researchers obtain the informed consent of study participants for the potential future use of their de-identified data for research and for broad sharing. Any institution submitting data must certify that they were collected in a legal and ethically appropriate manner and that personal identifiers have been removed. Moreover, investigators and their institutions must provide basic plans for following the policy as part of funding proposals and applications.
To find out more about the GDS policy and its other aspects, please see the following NIH press release: