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

"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.

“The problem with archiving this data is that we can’t,” Lisa Chinn, Head of Research Data Services at the University of Chicago, told 404 Media. 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."