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Daily Dashboard | NIH should use open model for All of Us project Related reading: Notes from the IAPP Canada Managing Director, 29 March 2024

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In an op-ed for Bloomberg Opinion, Steven Salzberg writes that as the U.S. National Institutes of Health embarks on its All of Us program, which aims to collect the genetic data of 1 million people, it would be wise to reconsider its attempt to guarantee total privacy for recruits. He points to the Personal Genome Project, which invites participants to “publicly share their personal data for the greater good” and has collected more than 6,000 U.S. participants, as a model to follow. “Rather than promise to keep all data secret forever — a promise that will almost inevitably end up being broken — the NIH should first try recruiting people to sign up for All of Us and other genome projects using the open model of the Personal Genome Project. Open genomes will make science move faster, and there’s no time, or good reason, to wait,” Salzberg writes.
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