Working Group of the Advisory Committee to the NH Director formed to outline Precision Medicine Initiative plan.

NIH have put together a team with wide experience in precision medicine and clinical studies. The group will present the vision for building the national participant group for the Precision Medicine Initiative and invite public input from various stakeholders. The group’s key aims are to define what outcomes can be expected from the Initiative, what issues will need to be addressed in the study design, and what a success should look like in 5 and 10 years. They will deliver a preliminary report in September 2015.

A two-day workshop was held on February 11-12, 2015, which helped to shape the objectives of the working group. To fulfill its charge, the working group will gather additional input from patient and scientific stakeholder groups through a combination of public workshops on precision medicine topics, including privacy, electronic health records, mobile health technologies, existing research cohorts, participant preferences, and inclusion of minority and under-served populations.

 

External working group on building a research cohort for precision medicine:

Co-Chairs:

  • Richard Lifton, M.D., Ph.D., Chair, Department of Genetics, Sterling Professor of Genetics and Professor of Medicine, Founder and Executive Director, Yale Center for Genomic Analysis, Investigator, Howard Hughes Medical Institute, Yale University School of Medicine, New Haven, Connecticut
  • Bray Patrick-Lake, M.F.S., Director of Stakeholder Engagement, Clinical Trial Transformation Initiative, Duke University, Durham, North Carolina
  • Kathy Hudson, Ph.D., Deputy Director of Science, Outreach, and Policy, National Institutes of Health

Members:

  • Esteban Gonzalez Burchard, M.D., M.P.H., Harry Wm. and Diana V. Hind Distinguished Professor in Pharmaceutical Sciences Professor and Vice Chair, Departments of Bioengineering & Therapeutic Sciences and Medicine Director, Center for Genes, Environments & Health University of California, San Francisco
  • Tony Coles, M.D., M.P.H., Chairman and CEO, Yumanity Therapeutics, Cambridge, Massachusetts
  • Rory Collins, FMedSci, Professor of Medicine & Epidemiology, Nuffield Department of Population Health, University of Oxford, U.K.
  • Andrew Conrad, Ph.D., Head of Life Sciences Team, Google X, Mountain View, California
  • Josh Denny, M.D., Associate Professor of Biomedical Informatics and Medicine, Vanderbilt University, Nashville, Tennessee
  • Susan Desmond-Hellmann, M.D., M.P.H., CEO, Gates Foundation, Seattle
  • Eric Dishman, Intel Fellow & General Manager, Health & Life Sciences, Intel, Santa Clara, California
  • Kathy Giusti, M.B.A., Founder and Executive Chairman, Multiple Myeloma Research Foundation, Norwalk, Connecticut
  • Sekar Kathiresan, M.D., Director, Preventive Cardiology, Massachusetts General Hospital, Boston; Institute Member, Broad Institute, Cambridge; Associate Professor of Medicine, Harvard Medical School, Boston
  • Sachin Kheterpal, M.D., M.B.A., Associate Professor, Department of Anesthesiology, University of Michigan Medical School, Ann Arbor
  • Shiriki Kumanyika, PhD, MPH, Emeritus Professor of Epidemiology, University of Pennsylvania Perelman School of Medicine
  • Spero M. Manson, Ph.D., Distinguished Professor and Director, Centers for American Indian and Alaska Native Health, Colorado School of Public Health, University of Colorado, Denver
  • P. Pearl O’Rourke, M.D., Director, Human Research Affairs, Partners Health Care System, Inc., Boston
  • Richard Platt, M.D., Professor and Chair of the Harvard Medical School Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston
  • Jay Shendure, M.D., Ph.D., Associate Professor, Genome Sciences, University of Washington, Seattle
  • Sue Siegel, CEO, GE Ventures & Healthymagination, Menlo Park, CA