NIH continues working with stakeholders to get ready for the implementation of the NIH Data Management and Sharing Policy on January 25, 2023. Today, NIH is releasing two new resources for the research community that aim to protect privacy and respect the autonomy of research participants when sharing data.
The first resource is the Informed Consent for Research with Data and Biospecimens: Points to Consider and Sample Language for Future Use and/or Sharing. This document is intended to provide sample language to investigators and IRBs when developing consent for secondary use of data/biospecimens.
We are also releasing a request for comment on protecting the privacy of research participants when data is shared. NIH is seeking comments on this draft guidance through June 27, 2022. Full information, including how to comment can be found here.
To learn more please see the latest “Under the Poliscope” blog post by Dr. Lyric Jorgenson: Gearing Up for 2023 Part II: Implementing the NIH Data Management and Sharing Policy