This PDF is available from The National Academies Press at http://www.nap.edu/catalog.php?record_id=21707 Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary ISBN Sarah H. Beachy, Steve Olson, and Adam C. Berger, Rapporteurs; 978-0-309-37112-4 Roundtable on Translating Genomic-Based Research for Health; Board on Health Sciences Policy; Institute of Medicine 116 pages 6 x 9 PAPERBACK (2015) Visit the National Academies Press online and register for... Instant access to free PDF downloads of titles from the NATIONAL ACADEMY OF SCIENCES NATIONAL ACADEMY OF ENGINEERING INSTITUTE OF MEDICINE NATIONAL RESEARCH COUNCIL 10% off print titles Custom notification of new releases in your field of interest Special offers and discounts Distribution, posting, or copying of this PDF is strictly prohibited without written permission of the National Academies Press. Unless otherwise indicated, all materials in this PDF are copyrighted by the National Academy of Sciences. Request reprint permission for this book Copyright © National Academy of Sciences. All rights reserved. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary Roundtable on Translating Genomic-Based Research for Health Board on Health Sciences Policy Sarah H. Beachy, Steve Olson, and Adam C. Berger, Rapporteurs Copyright © National Academy of Sciences. All rights reserved. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001 NOTICE: The workshop that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. This project was supported by contracts between the National Academy of Sciences and the American Academy of Nursing (unnumbered contract); American College of Medical Genetics and Genomics (unnumbered contract); American Heart Association (unnumbered contract); American Medical Association (unnumbered contract); American Society of Human Genetics (unnumbered contract); Association for Molecular Pathology (unnumbered contract); Biogen Idec (unnumbered contract); Blue Cross and Blue Shield Association (unnumbered contract); College of American Pathologists (unnumbered contract); Department of Veterans Affairs (Contract No. VA240-14-C-0037); Eli Lilly and Company (unnumbered contract); Genetic Alliance (unnumbered contract); Health Resources and Services Administration (Contract No. HHSH250200976014I, Order No. HHSH25034021T); International Society for Cardiovascular Translational Research (unnumbered contract); Janssen Research & Development, LLC (unnumbered contract); Kaiser Permanente Program Offices Community Benefit II at the East Bay Community Foundation (Contract No. 20121257); Merck & Co., Inc. (Contract No. CMO-140505-000393); National Cancer Institute (Contract No. HHSN263201200074I, TO#5); National Human Genome Research Institute (Contract No. HHSN263201200074I, TO#5); National Institute of Mental Health (Contract No. HHSN263201200074I, TO#5); National Institute of Nursing Research (Contract No. HHSN263201200074I, TO#5); National Institute on Aging (Contract No. HHSN263201200074I, TO#5); National Society of Genetic Counselors (unnumbered contract); Northrop Grumman Health IT (unnumbered contract); Pfizer Inc. (unnumbered contract); and PhRMA (unnumbered contract). The views presented in this publication do not necessarily reflect the views of the organizations or agencies that provided support for the activity. International Standard Book Number-13: 978-0-309-37112-4 International Standard Book Number-10: 0-309-37112-0 Additional copies of this workshop summary are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2015 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin. Suggested citation: IOM (Institute of Medicine). 2015. Genomics-enabled learning health care systems: Gathering and using genomic information to improve patient care and research: Workshop summary. Washington, DC: The National Academies Press. Copyright © National Academy of Sciences. All rights reserved. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary Copyright © National Academy of Sciences. All rights reserved. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charteer granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Victor J. Dzau is president of the Institute of Mediicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with geneeral policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Ciceroone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org Copyright © National Academy of Sciences. All rights reserved. Genomics-Enabled Learning Health Care Systems: Gathering and Using Genomic Information to Improve Patient Care and Research: Workshop Summary PLANNING COMMITTEE1 GEOFFREY GINSBURG (Co-Chair), Director, Center for Applied Genomics and Precision Medicine, Professor of Medicine and of Pathology and Biomedical Engineering, Duke University SAM SHEKAR (Co-Chair), Chief Medical Officer, Northrop Grumman Health IT JENNIFER HALL, Director, Program in Translational Genomics, Lillehei Heart Institute, Associate Professor of Medicine, University of Minnesota ANDREW KASARSKIS, Vice Chair, Department of Genetics and Genomic Sciences, Co-Director, Institute for Genomics and Multiscale Biology, Icahn School of Medicine at Mount Sinai DEBRA LEONARD, Professor and Chair of Pathology and Laboratory Medicine, The University of Vermont Medical Center JAMES O’LEARY, Chief Innovation Officer, Genetic Alliance MICHELLE ANN PENNY, Senior Director, TTx Genetics and Bioinformatics, Eli Lilly and Company RONALD PRZYGODZKI, Acting Director, Biomedical Laboratory Research and Development, Associate Director for Genomic Medicine, Office of Research and Development, Department of Veterans Affairs MICHAEL S. WATSON, Executive Director, American College of Medical Genetics and Genomics CATHERINE A. WICKLUND, Director, Graduate Program in Genetic Counseling, Associate Professor, Department of Obstetrics and Gynecology, Northwestern University JANET K. WILLIAMS, Professor of Nursing, Chair of the Social Science and Behavioral Research Institutional Review Board, University of Iowa 1The planning committee’s role was limited to planning the workshop. The workshop summary has been prepared by the rapporteurs as a factual account of what occurred