PRIORITIES FOR PUBLIC HEALTH GENOMICS GENOMICS HEALTH PUBLIC FOR PRIORITIES 2012–2017 PRIORITIES FOR PUBLIC HEALTH GENOMICS STAKEHOLDER CONSULTATION | PRIORITIES CONFERENCE REPORT | SEPTEMBER 2011 2012–2017 PRIORITIES FOR PUBLIC HEALTH GENOMICS 2012–2017 STAKEHOLDER CONSULTATION | PRIORITIES CONFERENCE REPORT SEPTEMBER 2011 Funding for this project was made possible by the Centers for Disease Control and prevention through McKing Consulting Corporation, contract 200-2009-F-32675. The contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC. PREFACE Priorities for Public Health Genomics 2012–2017 This report results from an initiative of the Office of Public Health Genomics, Centers for Disease Control and Prevention (CDC/OPHG) to recommend priorities to advance the field of public health genomics during the five year period 2012–2017. CDC/OPHG initiated three activities to develop these priority recommendations: (1) an extensive consultation of public health genomics stakeholders conducted by the Center for Public Health and Community Genomics at the University of Michi- gan School of Public Health , including a) analysis of a Request for Information (RFI) issued by the Department of Health and Human Services/ CDC, b) interviews of key informants from the public health system and c) informal discussions with community- and practice-based public health practitioners; (2) interviews of key informants from the non-profit and for-profit sectors conducted by Genetic Alliance; and (3) an all-day meeting held in Bethesda, MD on September 14, 2011, attended by over 70 leaders in the field of public health genomics, based in academic institutions, public health and health care organizations, and community-based organizations. Part One of this report consists of the Stakeholder Consultation prepared by the Center for Public Health and Community Genomics, focusing on the public health commu- nity. The table of recommendations in Part One and the appended report of key infor- mant interviews incorporate inputs gathered by Genetic Alliance. Appendices provide further detail regarding recommendations received as well as a literature review pre- pared by the Center for Public Health and Community Genomics. Part Two consists of the report of the September 14 meeting prepared by Genetic Alliance. Additional materials related to the Stakeholder Consultation can be found in the appendices to this report, and on the website of the APHA Genomics Forum, www. genomicsforum.org. The full list of Request for Information (RFI) responses can be found on the following government website: http://www.regulations.gov/#!docketDe tail;dct=FR+PR+N+O+SR+PS;rpp=10;po=0;D=CDC-2011-0008. Questions or comments on this report can be sent to: n Toby Citrin, Director, Center for Public Health and Community Genomics ([email protected]) n James O’Leary, Chief Innovation Officer, Genetic Alliance ([email protected]) n CDC/OPHG: 404.498.0001/[email protected] CONTENTS PART ONE: STAKEHOLDER CONSULTATION APPENDICES: I. PLANNING COMMITTEE AND STAFF ................................................... 7 APPENDICES TO PART ONE II. EXECUTIVE SUMMARY ......................................................................... 8 APPENDIX 1: PARTICIPANT LIST ...............................................................70 III. ENVISIONING THE FUTURE OF PUBLIC HEALTH GENOMICS ........... 11 APPENDIX 2: LITERATURE REVIEW .......................................................... 72 IV. PROCESS .............................................................................................12 APPENDIX 3: SUMMARIES OF KEY INFORMANT INTERVIEWS — V. WHAT WE LEARNED ............................................................................16. PUBLIC HEALTH SYSTEM .......................................................................... 87 EDUCATION ..................................................................................17 RESEARCH...................................................................................22 APPENDIX 4: REPORT OF KEY INFORMANT INTERVIEWS — ASSURANCE ................................................................................26. NON-PROFIT AND FOR-PROFIT ORGANIZATIONS ..................................93 POLICY DEVELOPMENT ..............................................................28 APPENDIX 5: SUMMARIES OF INFORMAL DISCUSSIONS ..................... 103 HEALTH APPLICATIONS..............................................................30 APPENDIX 6.: REQUEST FOR INFORMATION (RFI) SUMMARY ...............107 INFRASTRUCTURE AND CAPACITY ............................................34 VI. TABLE OF RECOMMENDATIONS UTILIZING THE PUBLIC HEALTH IN AMERICA FRAMEWORK ...................................................38 VII. CONCLUSION .....................................................................................45 APPENDIX TO PART TWO APPENDIX 1 : MEETING AGENDA ............................................................ 120 PART TWO: PRIORITIES CONFERENCE REPORT I. INTRODUCTION ..................................................................................49 II. METHODOLOGY ..................................................................................50 III. SETTING THE STAGE ..........................................................................52 IV. BREAKOUT GROUPS ..........................................................................55 V. RESULTS .............................................................................................6.4 VI. CONCLUSIONS ...................................................................................6.8 PART ONE STAKEHOLDER CONSULTATION | PLANNING COMMITTEE AND STAFF | I. PLANNING COMMITTEE AND STAFF Planning Committee Members Ella Greene-Moton (ex officio) Barbara Burns McGrath [email protected] (academe) Sylvia Au (practice) Community Education Coordinator, [email protected] [email protected] Center for Public Health and Research Associate Professor, School State Genetics Coordinator, Hawaii Community Genomics of Nursing Department of Health University of Michigan School University of Washington of Public Health Toby Citrin (ex officio) Facilitator, National Community Sara Shostak (academe) [email protected] Committee (NCC) Special Interest [email protected] Director, Center for Public Health and Group on Genomics (SPIG) Assistant Professor, Department Community Genomics of Sociology University of Michigan School of Winona Hollins-Hauge Brandeis University Public Health (community) [email protected] Imogene Wiggs (community) Suzanne Cupal (practice) Commissioner, Washington [email protected] [email protected] Commission for African American Prevention Research Center, St. Louis Community Health Analyst, Genesee Affairs Missouri Department of Health & County Health Department Representative, Governor’s Senior Services Interagency Health Council Bureau of Health Promotion Debra Duquette (practice) University of Washington, Health Representative, National Community 7 [email protected] Promotion Research Center (HPRC) Committee (NCC) Special Interest Genomics Coordinator, Michigan Representative, National Community Group on Genomics (SPIG) Department of Community Health Committee (NCC) Special Interest Group on Genomics (SPIG) Karen Edwards (academe) Staff Liaisons to Planning [email protected] Dean Hosgood (ex officio) Professor, Department [email protected] Committee of Epidemiology Chair, Genomics Forum of the American Public Health Association Director, Institute for Public Health Judy Daltuva Genetics National Cancer Institute University of Washington Nora Isack Sharon Kardia (academe) Megan Knaus Karen Greendale (practice) [email protected] Tina Matter [email protected] Co-Director, Center for Public Health Director, Cancer Support and and Community Genomics Sally Meyer Professor and Chair, Department Survivorship Initiatives Stephen M. Modell Bureau of Chronic Disease Control of Epidemiology New York State Department of Health University of Michigan School Tevah Platt of Public Health PART ONE | STAKEHOLDER CONSULTATION | II. EXECUTIVE SUMMARY everal major themes emerged from for breast and ovarian cancer risk, and and—as it becomes more understood— the review, summarization and cat- Lynch syndrome testing for colon cancer the efficacy of genomic tools. Moreover, Segorization of the responses to the risk demonstrate the potential of genom- by using culturally and linguistically Request for Information (hereafter, RFI), ics to reduce mortality and strengthen appropriate methods, a focus on these interviews of key informants, informal prevention strategies related to common applications within communities experi- discussions, and relevant literature. Not chronic diseases. We need to make the encing an increased burden of disease can surprisingly, most of these themes have public—along with health care provid- help achieve health equity, a major com- also been highlighted in earlier reports, ers and organizations, third party payers, ponent of the public health mission. workshops, round tables and journal and others working to improve health articles addressing the future of public within and beyond the sphere of public Integrating Genomic, Social and health genomics (see Appendix 2, Lit- health genomics—aware of these effec- Environmental Factors erature Review), and were also reflected tive and important accomplishments and A number of respondents spoke about the in the recommendations