HHS to Explore Scope of Personally Identifiable Health Information, Seeks Public comments

The Department of Health and Human Services plans to modify sections of the federal Privacy Rule, issued under HIPAA. The proposed changes would clarify the scope of privacy and confidentiality of genetic information. More specifically, HHS proposes to modify the Privacy Rule, taking into account the Genetic Information Nondiscrimination Act, to prohibit health plans from using or disclosing personally identifiable health information, which would explicitly include genetic information, for underwriting purposes. Public comments on the proposed rule are due December 7, 2009. EPIC is recommending that HHS pay particular attention to the problem of data reidentification. For more information, see EPIC's Genetic Privacy Page.

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