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INNOVATIONS IN SERVICE dElIVERy IN ThE Age of genomics W o r k s h o p s u m m a ry Erin Hammers, Rapporteur Roundtable on Translating Genomic-Based Research for Health Board on Health Sciences Policy

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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report 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 Amer- ican College of Medical Genetics (Unnumbered contract); American College of Physicians (Unnumbered contract); American Medical Association (Unnumbered contract); American Nurses Association (Unnumbered contract); AstraZeneca Pharmaceuticals, Inc. (Unnumbered contract); Blue Cross/Blue Shield Association (Unnumbered contract); Centers for Disease Control and Prevention (Contract No. 200-2005-13434); College of American Pathologists (Unnumbered contract); Department of Veterans Affairs (Contract No. V101(93) P-2238); Eli Lilly and Company (Contract No. LRL-0028-07); Food and Drug Administration (Contract No. 223012460); Genetic Alliance (Unnumbered contract); Genomics Health, Inc. (Unnum- bered contract); GlaxoSmithKline, Inc. (Unnumbered contract); Health Systems Research, Inc. (Contract No. 07-H0116); National Human Genome Research Institute (Contract No. N01-OD-4-2139, TO#189); National Institute of Child Health and Human Development (Contract No. N01-OD-4-2139, TO#189); National Society of Genetic Counselors (Unnum- bered contract); Secretary’s Advisory Committee on Genetics, Health and Society (Contract No. N01-OD-4-2139, TO#189); and UnitedHealthcare (Unnumbered contract). Any opin- ions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13: 978-0-309-13214-5 International Standard Book Number-10: 0-309-13214-2 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www. iom.edu. Copyright 2009 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). 2009. Innovations in service delivery in the age of genomics: Workshop summary. Washington, DC: The National Academies Press.

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“Knowing is not enough; we must apply. Willing is not enough; we must do.” — Goethe Advising the Nation. Improving Health.

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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 charter granted to it by the Congress in 1863, the Acad- emy 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 engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Charles M. Vest is presi- dent 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 Insti- tute 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. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sci- ences 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 general 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. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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WORKSHOP PLANNING COMMITTEE ALfREd O. BERG, University of Washington REBECCA fISHER, Central Intelligence Agency MICHELE LLOyd-PuRyEAR, Health Resources and Services Administration ALExANdRA E. SHIELdS, Harvard/Massachusetts General Hospital Center on Genomics, Vulnerable Populations & Health Disparities MARTHA TuRNER, American Nurses Association, Center for Ethics and Human Rights CATHERINE A. WICKLuNd, Northwestern University  Institute of Medicine (IOM) planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution. 

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ROuNDTABLE ON TRANSLATING GENOMIC-BASED RESEARCH FOR HEALTH1 WyLIE BuRKE (Chair), Professor and Chair, Department of Medical History and Ethics, University of Washington, Seattle STEPHEN ECK, Vice President, Translational Medicine & Pharmacogenomics, Eli Lilly and Company, Indianapolis, Indiana FAITH T. FITzGERALD, Professor of Medicine, Assistant Dean of Humanities and Bioethics, University of California, Davis Health System, Sacramento GEOFFREy GINSBuRG, Director, Center for Genomic Medicine, Institute for Genomic Sciences & Policy, Duke University, Durham, North Carolina ALAN E. GuTTMACHER, Deputy Director, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland R. RODNEy HOWELL, Special Assistant to the Director, National Institute of Child Health and Human Development, Bethesda, Maryland KATHy HuDSON, Director, Genetics and Public Policy Center, Berman Bioethics Institute, Johns Hopkins University, Washington, DC SHARON KARDIA, Director, Public Health Genetic Programs; Associate Professor, Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor MOHAMED KHAN, Associate Director of Translational Research, Department of Radiation Medicine, Roswell Park Cancer Institute, Buffalo, New York MuIN KHOuRy, Director, National Office of Public Health Genomics, Centers for Disease Control and Prevention, Atlanta, Georgia ALLAN KORN, Chief Medical Officer, Senior Vice President Clinical Affairs, BlueCross/BlueShield Association, Chicago, Illinois DEBRA LEONARD, Professor and Vice Chair for Laboratory Medicine; Director of the Clinical Laboratories for New York–Presbyterian Hospital, Weill Cornell Medical Center of Cornell University, New York MICHELE LLOyD-PuRyEAR, Chief, Genetic Services Branch, Health Resources and Services Administration, Rockville, Maryland ROBERT L. NuSSBAuM, Chief, Division of Medical Genetics, University of California, San Francisco, School of Medicine 1 IOM forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteur and the institution. vi

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TimoThy o’Leary, Director, Biomedical Laboratory Research and Development Service; Director, Clinical Science Research and Development Service, Department of Veterans Affairs, Washington, DC ameLie G. ramirez, Dielmann Chair, Health Disparities and Community Outreach Research; Director, Institute for Health Promotion Research, University of Texas Health Science Center at San Antonio aLLen D. roses, Jefferson-Pilot Professor of Neurobiology and Genetics, Professor of Medicine (Neurology); Director, Deane Drug Discovery Institute; Senior Scholar, Fuqua School of Business, R. David Thomas Executive Training Center, Duke University, Durham, North Carolina sTephen G. ryan, Executive Director, Discovery Medicine and Epidemiology, AstraZeneca Pharmaceuticals, Wilmington, Delaware Kevin a. schuLman, Professor of Medicine and Business Administration; Director, Center for Clinical and Genetic Economics; Associate Director, Duke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina paTricK Terry, Director, Consumer Advocacy and Government Affairs, Genomic Health, Inc., Washington, DC sharon Terry, President and CEO, Genetic Alliance, Washington, DC sTeven TeuTsch, Executive Director, U.S. Outcomes Research, Merck & Co., Inc., West Point, Pennsylvania marTha Turner, Assistant Director, American Nurses Association, Center for Ethics and Human Rights michaeL s. WaTson, Executive Director, American College of Medical Genetics, Bethesda, Maryland caTherine a. WicKLunD, Immediate Past President, National Society of Genetic Counselors; Associate Director, Graduate Program in Genetic Counseling; Assistant Professor, Department of Obstetrics and Gynecology, Northwestern University, Chicago, Illinois JaneT WooDcocK, Deputy Commissioner and Chief Medical Officer, Food and Drug Administration, Bethesda, Maryland Roundtable Staff anDreW pope, Director LyLa m. hernanDez, Project Director erin hammers, Research Associate aLex repace, Senior Project Assistant IOM Anniversary Fellow Lisa BarceLLos, Assistant Professor, University of California, Berkeley vii

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Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: David R. Nerenz, Ph.D., Center for Health Services Research, Henry Ford Hospital and Henry Ford Health System Neuroscience Institute Karen Powell, M.S., C.G.C., Center for Biotechnology, Genomics and Health Research, The University of North Carolina at Greensboro Sylvia Trujillo, J.D., M.P.P., Division of Legislative Counsel, American Medical Association David veenstra, Ph.D., Institute for Public Health Genetics and Department of Pharmacy, University of Washington Beverly M. yashar, M.S., Ph.D., Genetic Counseling Graduate Program, Departments of Human Genetics and Ophthalmology and Visual Sciences, Kellogg Eye Center, University of Michigan ix

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x REVIEWERS Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the final draft of the report before its release. The review of this report was overseen by Dan Blazer, M.D., Ph.D., Duke University Medical Center. Appointed by the Institute of Medicine, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully con- sidered. Responsibility for the final content of this report rests entirely with the rapporteur and the institution.

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Contents 1 INTRODUCTION 1 2 GENETIC SERVICE DELIVERY: THE CURRENT SYSTEM AND ITS STRENGTHS AND CHALLENGES 3 Current Status of Genetic Service Delivery, 3 Debra Lochner Doyle, M.S., C.G.C. Challenges of Disparities and Access, 6 Alexandra Shields, Ph.D. Patient Education and Communication, 10 Vivian Ota Wang, Ph.D., F.A.C.M.G., C.G.C. Educational Pipeline and Workforce, 12 Catherine A. Wicklund, M.S., C.G.C. Discussion, 17 Wylie Burke, M.D., Ph.D., Moderator 3 NEW MODELS FOR SERVICE DELIVERY 21 Informed Medical Decisions, Inc., 21 Heather Shappell, M.S., C.G.C. Navigenics, 23 Elissa Levin, M.S., C.G.C. Cincinnati Children’s Hospital Medical Center, 27 Cynthia Prows, M.S.N., R.N. Discussion, 29 Wylie Burke, M.D., Ph.D., Moderator xi

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xii CONTENTS 4 VISION OF THE FUTURE 33 Wylie Burke, M.D., Ph.D. Discussion, 38 Wylie Burke, M.D., Ph.D., Moderator 5 BRAINSTORMING ON A SERVICE DELIVERY MODEL FOR THE FUTURE 41 Sharon Kardia, Ph.D., Moderator Panelists: Debra Lochner Doyle, M.S., C.G.C.; Alexandra Shields, Ph.D.; Vivian Ota Wang, Ph.D., F.A.C.M.G., C.G.C.; Catherine Wicklund, M.S., C.G.C.; Frederick Chen, M.D., M.P.H.; Catherine DesRoches, Dr.P.H.; Bruce Korf, M.D., Ph.D.; and Sharon Terry Health Care Delivery System, 41 Health Information Technology, 44 Data Collection, 46 Discussion, 48 Sharon Kardia, Ph.D., Moderator 6 CONCLUDING REMARKS 51 Wylie Burke, M.D., Ph.D. Catherine Wicklund, M.S., C.G.C. REFERENCES 53 APPENDIXES A WORKSHOP AGENDA 57 B SPEAKER BIOSKETCHES 61 FIGuRES 2-1 Attention focusing: Vase or two faces, 12 4-1 Vanishing family history of colorectal cancer, 35 5-1 Stratification of genetics in medicine, 42 BOx 3-1 Conditions Covered by Navigenics Genetic Testing in 2008, 27