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White House’s Precision Medicine Initiative alarms some privacy advocates

HIPAA, we have a problem. The National Institutes of Health, which is spearheading the White House’s Precision Medicine Initiative, isn’t subject to privacy requirements under a set of rules called HIPAA, according to a new report from the World Privacy Forum. That report suggests that this may prove detrimental to patients who donate personal health information to the initiative. 

From the report: 

Medical record data and biospecimen data that consumers donate to the PMI are not covered by the core federal health privacy law while in the hands of the PMI…Patients who share their health records and biospecimens with the PMI could lose the ability to claim a physician-patient privilege in unrelated judicial proceedings.

But others say that these concerns are unfounded, as the White House has met with federal health agencies, privacy experts, bio-ethicists, and others to ensure that patients are protected. 

CF