Response to NIH RFI on Genomic Data Sharing Policy
Agency: NIH Office of Science Policy
Submitted: February 3, 2022
In November 2021, the National Institutes of Health (NIH) Office of Science Policy (OSP) published a Request for Information (RFI) concerning their Genomic Data Sharing Policy. NIH is seeking public input on potential updates to the original Policy, issued in 2014. Last week, PRIM&R submitted comments welcoming revisions to the policy in the face of evolving technologies and encouraging NIH enhance its public engagement efforts.
In our comments, PRIM&R urged NIH to:
- Embrace the revision of the original Genomic Data Sharing Policy as an opportunity to undertake a more substantive and meaningful process of public engagement around genomic data sharing,
- Review and assess the full range of safeguards available for genomic data sharing beyond deidentification of data, which can no longer carry the entire burden ofprotection, and
- Seriously consider methods and policies for sanctioning parties who misuse the data to which they have been granted access.