In mid-November the White House released the Privacy and Trust Principles for the Precision Medicine Initiative (PMI). The principles provide a framework for protecting the data of individuals participating in the initiative, while accelerating biomedical research and breaking new ground in providing participants data access. “PMI includes aligned efforts by the Federal government and private sector collaborators to pioneer a new approach for health research and health care delivery that prioritizes patient empowerment through access to information,” said Jo Handelsman, associate director for science at the White House Office of Science and Technology Policy, in a blog post. “These principles are intended to establish a foundation for future PMI activities to ensure that privacy has been built into the core of the Initiative and that privacy is maintained as a central priority of PMI throughout all components.” Earlier in the year, President Obama asked for $215 million in funding for the initiative. The largest line item in the proposed budget—$130 million—was for the creation of a massive database containing the genetic data of at least one million volunteer participants. Given the increasing number of health care-related data breaches and the inherent sensitivity of genetic data, privacy must be ensured and…
