NIH panel proposes framework for Precision Medicine research network

A National Institutes of Health advisory group yesterday issued recommendations for creating and managing a national network of research volunteers for the president’s Precision Medicine Initiative. Participants would share their health data and a biological specimen for research to advance a personalized approach to disease prevention and treatment. The group proposes to recruit participants both directly and through health care provider organizations, which would conduct the participant’s baseline exam, collect a biospecimen and share electronic health record data with the program. NIH plans to begin enrolling participants in the initiative next year with the goal of recruiting at least one million within four years. The report includes recommendations related to recruiting and engaging research participants, collecting and storing data and specimens, data privacy and security, governance and other considerations. President Obama announced the initiative in January.