In March, National Institutes of Health (NIH) director Francis Collins appointed a team of individuals to serve on the Advisory Committee to the NIH Director (ACD) Working Group on the Precision Medicine Initiative (PMI). The Working Group is expected to host public meetings to seek public input into the development of President Obama’s proposed Precision Medicine Initiative. This group will help the NIH define “what can be learned from a study of this scale and scope, what issues will need to be addressed and considered as part of the study design, and what success would look like five and ten years out.”
PMI was launched by President Obama on January 30 and called for initial funding of $215 million in the President’s FY 2016 budget request. This sum includes $130 million dedicated to initiating the process of building a one million or more research cohort of individuals who will volunteer to share biological, environmental, lifestyle, and behavioral information and tissue samples with researchers. It is emphasized that “Participant input through representation on the working group, workshops and other feedback mechanisms will be central to the design and implementation of the study.”
Richard Lifton (Yale University), Bray Patrick-Lake (Duke University), and Kathy Hudson (NIH) have been appointed co-chairs of the working group. The working group is expected to deliver a preliminary report at the September 2015 ACD meeting.
Members of the working group include:
- Esteban Gonzalez Burchard, M.D., M.P.H., University of California, San Francisco
- Tony Coles, M.D., M.P.H., Yumanity Therapeutics
- Rory Collins, FMedSci, University of Oxford, UK
- Andrew Conrad, Ph.D., Google X
- Josh Denny, M.D., Vanderbilt University
- Susan Desmond-Hellmann, M.D., M.P.H., Gates Foundation
- Eric Dishman, Intel
- Kathy Giusti, M.B.A., Multiple Myeloma Research Foundation
- Sekar Kathiresan, M.D., Massachusetts General Hospital and Harvard Medical School
- Sachin Kheterpal, M.D., M.B.A., University of Michigan Medical School, Ann Arbor
- Shiriki Kumanyika, Ph.D., M.P.H., University of Pennsylvania Perelman School of Medicine
- Spero M. Manson, Ph.D., University of Colorado, Denver
- P. Pearl O’Rourke, M.D., Partners Health Care System, Inc.
- Richard Platt, M.D., Harvard Medical School
- Jay Shendure, M.D., Ph.D., University of Washington, Seattle
- Sue Siegel, GE Ventures & Healthymagination
In addition, the working group will include ex-officio members from the Department of Defense, Department of Veteran Affairs, Food and Drug Administration, Department of Health and Human Services Office of the National Coordinator for Health Information Technology, and the White House Office of Science and Technology Policy.
In February, NIH held a two-day workshop to shape the objectives of the working group. The working group is expected to solicit input on a range of topics, including privacy, electronic health records, mobile health technologies, participant preferences, existing research cohorts, and inclusion of minority and underserved populations.
Additional information is available here.