Precision Medicine Initiative: Draft Data Security Policy Principles and Framework

The mission of the President’s Precision Medicine Initiative (PMI) is to enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward the development of individualized care. Building from the existing PMI Privacy and Trust Principles, this document offers security policy principles and a framework to guide decision-making by organizations conducting or participating in precision medicine activities. Recognizing that there is no “one size fits all” approach to managing data security, this document provides a framework for protecting participants’ data and resources in an appropriate and ethical manner that can be tailored to meet organization-specific requirements.

Participant-contributed data is the foundational asset of PMI, and participants need assurance that it is being protected and used responsibly. The White House invites public comments through March 25, 2016, on the Draft Data Security Policy Principles and Framework released today.