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  3. 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.

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.

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  • petersuberP This user is from outside of this forum
    petersuberP This user is from outside of this forum
    petersuber
    wrote last edited by petersuber@fediscience.org
    #1

    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

    Alexander LothX 1 Reply Last reply
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    • petersuberP 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

      Alexander LothX This user is from outside of this forum
      Alexander LothX This user is from outside of this forum
      Alexander Loth
      wrote last edited by
      #2

      @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.

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