petersuber

Sorry I missed this: In December 2025, the #NIH called for public comments on a revision to its data access policy, proposing "controlled access" for certain kinds of data on human subjects. The proposal would also block access to researchers from certain "Countries of Concern" like China, Cuba, Iran, North Korea, Russia, and Venezuela. The comment deadline was last week.
https://grants.nih.gov/grants/guide/notice-files/NOT-OD-26-023.html

Many neuroscientists submitted objections to the proposal.
https://www.thetransmitter.org/data-sharing/neuroscientists-challenge-nihs-proposed-human-data-access-policy/

One objection: The current policy already requires "de-identification" of shared data on human subjects, and tests show these steps to be effective in blocking re-identification.

Another: Existing data repositories don't have the needed access controls, and data would have to migrate to new infrastructure.

Hence, they argue, the new policy would reduce data sharing, reduce replication studies, increase burdens for researchers, and slow compliance, without improving privacy.

#Data #OpenData #Medicine #Privacy #Trump #TrumpVResearch #USPol #USPolitics

NOT-OD-26-023: Request for Information on Draft NIH Controlled-Access Data Policy and Proposed Revisions to NIH Genomic Data Sharing Policy

NIH Funding Opportunities and Notices in the NIH Guide for Grants and Contracts: Request for Information on Draft NIH Controlled-Access Data Policy and Proposed Revisions to NIH Genomic Data Sharing Policy NOT-OD-26-023. NIH

Mar 24 at 1:29pmWeb
Show threadAlexander Loth6d ago
@petersuber The tension here is real — open science depends on open access, but 'controlled access' proposals often expand quietly once established. The country-based access restrictions are particularly concerning: scientific collaboration should be built on trust and verification, not geography. Worth watching closely as this sets a precedent.