White House Releases Proposed Precision Medicine Initiative Privacy Framework

Earlier this year, President Obama launched a high-profile "Precision Medicine Initiative" (PMI) to develop treatments, diagnostics, and prevention strategies tailored to the individual genetic characteristics of each patient.
United States Food, Drugs, Healthcare, Life Sciences

Earlier this year, President Obama launched a high-profile "Precision Medicine Initiative" (PMI) to develop treatments, diagnostics, and prevention strategies tailored to the individual genetic characteristics of each patient.  On July 8, 2015 the White House released for public comment a draft document entitled "Precision Medicine Initiative: Proposed Privacy and Trust Principles," which provides broad guidance concerning:  governance; transparency; reciprocity; respect for participant preferences; data sharing, access and use; data quality and integrity; and security within the context of the PMI.  The principles include "strategies for engendering public trust and maximizing the possible benefits of a large national research cohort, while minimizing the risks inherent in large-scale data collection, analysis, and sharing."  The White House is accepting public comments on the proposed principles through August 7, 2015.

This article is presented for informational purposes only and is not intended to constitute legal advice.

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