Provide Input on Potential Updates and Long-Term Considerations for the NIH Genomic Data Sharing Policy

NIH has issued a Request for Information (RFI) that seeks public input on potential updates to the NIH Genomic Data Sharing (GDS) Policy to keep pace with evolving scientific opportunities and stakeholder expectations.

NIH remains committed to the principles of its various data sharing and public access policies; the principles espoused by the GDS Policy are no different. Input from the cancer research community is needed, so that the GDS Policy may continue to maximize scientific advances and public benefit by sharing genomic and associated phenotypic data in a manner consistent with participants’ informed consent.

RFI information will be accepted through February 28, 2022. Input is requested for the following topics:

  • Maximizing Data Sharing while Preserving Participant Privacy and Preferences
  • Expectations for Alternative NIH-Supported Genomic Data Management and Sharing Resources that Store Human Genomic Data
  • Policy Harmonization
  • Long-Term Consideration of the Scope of GDS Policy

To learn more about this RFI, please visit the NIH grants webpage.

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