On July 8, 2015, the White House released proposed Privacy and Trust Principles (“Privacy Principles”) for the Administration’s Precision Medicine Initiative (“PMI”), a program that was announced by the President in his 2015 State of the Union address.4 The proposed Privacy Principles are intended to help protect the privacy of individuals who volunteer their medical information for PMI. 5
PMI is a federal research program that supports advancements in both science and policy that enable the development of individualized treatments for patients based on their specific characteristics, such as genetic makeup, environment, and lifestyle, as opposed to providing generalized treatments that are designed for the “average patient.” The White House has stated that the success of PMI depends in large part on the ability of the initiative to protect and secure the individually identifiable health information that is volunteered and submitted.
The proposed Privacy Principles were drafted by an interagency working group that was co-led by the White House Office of Science and Technology Policy, the Department of Health and Human Services Office for Civil Rights, and the National Institutes of Health. The proposed Privacy Principles are intended to provide guidance on governance, transparency, reciprocity, respect for participant preferences, data sharing, access and use, data quality and integrity, and security.
The White House is soliciting public comments on the Proposed Principles through August 7, 2015.