By Kelly A. Briganti, Editorial Director, G2 Intelligence
While promoting a personalized approach to medicine which involves more sharing of data, the Obama administration isn’t neglecting the need to protect privacy when it comes to 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 principles about the precision medicine initiative and data sharing and privacy. The document also addresses patient preferences with regard to their personal data and reciprocal access for patients who contribute data to the precision medicine initiative.
Public comments are due by August 7, 2015. The group also recommended a similar set of principles be developed for data security and be periodically updated to “keep pace with an ever-advancing technological environment.”
For more information, see the next issue of National Intelligence Report.