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Massive, Unarchivable Datasets of Cancer, Covid, and Alzheimer’s Research Could Be Lost Forever


Days before Robert F. Kennedy Jr. announced that 10,000 HHS staffers would lose their jobs, a message appeared on NIH research repository sites saying they were "under review."

Almost two dozen repositories of research and public health data supported by the National Institutes of Health are marked for “review” under the Trump administration’s direction, and researchers and archivists say the data is at risk of being lost forever if the repositories go down. Unlike other government datasets or web pages, downloading or otherwise archiving NIH data often requires a Data Use Agreement between a researcher institution and the agency, and those agreements are carefully administered through a disclosure risk review process. Become a paid member for unlimited ad-free access to articles, bonus podcast content, and more.

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