While promoting a personalized approach to medicine, which involves more sharing of data, the Obama administration isn’t neglecting the need to protect privacy of health information. The White House released July 8 Proposed Privacy and Trust Principles as part of the Precision Medicine Initiative. These principles provide guidance on access to, sharing and use of data as well as data quality, integrity and security. "The principles articulate a set of core values and responsible 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," according to the proposed guidance. The principles were developed by a working group spearheaded by the Department of Health and Human Services Office for Civil Rights (which enforces HIPAA’s privacy and security rules), the National Institutes of Health and the White House Office of Science and Technology Policy. The group consulted experts and reviewed bioethics literature and biobank and research privacy policies. Their efforts yielded 10 fundamental assumptions about the Precision Medicine Initiative, data sharing and privacy. Those fundamentals include recognition that those who contribute their data to precision medicine related research will come from different backgrounds and…
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