President Obama's Precision Medicine Initiative
("PMI") continues to move forward with the release of Privacy and Trust Principles, developed by an
interagency working group of the White House Office of Science and
Technology Policy, U.S. Department of Health and Human Services
Office for Civil Rights, and National Institutes of Health. The
principles are intended to establish parameters for future PMI
activities, including governance; transparency; participant
empowerment through access to information; respect for participant
preferences; data sharing, access, and use; and data quality and
integrity. On November 9, 2015, the White House announced it had considered more than 100
comments submitted by individuals, groups, academic research
institutions, and advocacy organizations in crafting the final
principles. Key comments included consideration and adoption of
standards for data security; PMI is still evaluating this policy,
which it hopes to release in the coming months.
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