Contribute to GA4GH’s Response to the NIH’s Request for Information

GA4GH is coordinating a joint response to the NIH’s request for information regarding its draft controlled-access data policy and proposed revisions to the NIH Genomic Data Sharing Policy.

The National Institutes of Health (NIH) has released a Request for Information on Draft NIH Controlled-Access Data Policy and Proposed Revisions to NIH Genomic Data Sharing Policy. This encompasses their proposed Draft NIH Controlled-Access Data Policy, which outlines expectations for controlled-access data sharing, as well as updates to its NIH Genomic Data Sharing Policy, aimed at eliminating policy redundancies.

The NIH is currently seeking input on both policies, specifically regarding the availability of controlled-access data repositories, the appropriateness of protected data types, and the impacts on imputation servers.

For more details on the request, please refer to the full NIH Notice.

How to contribute

GA4GH will be coordinating a joint response to this request for information. We invite members from the broader GA4GH community to share their feedback.

If you are interested in participating, please provide your comments using the form below by 26 February:
https://forms.ga4gh.org/t/9GkQHmrRoFus

Kindly note that while we cannot guarantee that all comments will be included as-is, your contributions will be carefully reviewed to ensure we capture the key themes and consensus of the community. We will aim to consolidate the community feedback received into a cohesive submission.

If you have any questions in the meantime, please feel free to reach out to the Regulatory & Ethics Work Stream (REWS) team at rews-coordinator@ga4gh.org.