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Privacy & Data

Comments on Use of Health Information in Federally Funded Research

The Center for Democracy & Technology (CDT), through its Health Privacy Project, submitted comments in response to HHS’ July 26, 2011 Advance Notice of Proposed Rulemaking (ANPRM) on Human Subjects Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay and Ambiguity for Investigators.

As a result of our leadership of the Tiger Team, we played a major and influential role in shaping and subsequently writing the recommendations of the Tiger Team and Policy Committee on this ANPRM. These  comments serve to offer our endorsement of the recommendations made in that letter, to reinforce a number of its points, and to submit our own recommendations in several areas not addressed by the Policy Committee. These areas include the treatment of identifiable and de-identified data; extending the scope of the Common Rule; and the proposal to harmonize HIPAA and the Common Rule where such consistency would be beneficial.

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