PRIM&R is calling on NIH to improve its outreach to the public in determining new rules and procedures for sharing their genetic data when participating in research. We also ask for rigorous study of methods for protecting data privacy outside of deidentification, which can no longer be relied upon by itself to permanently protect data. Read more
8Feb2022
PRIM&R calls for NIH to deepen engagement with the public on data sharing rules
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8 Feb
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