Roundtable on Genomics and Precision Health Fall 2021 Workshop
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Board on Health Sciences Policy Roundtable on Genomics and Precision Health Fall 2021 Workshop October 5, 2021 (12 PM – 3:30 PM ET) Webcast link: https://www.nationalacademies.org/event/10-05-2021/improving- diversity-of-the-genomics-workforce-a-workshop *Questions for speakers can be submitted in the box under the webcast on this site
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Fall 2021 Workshop October 5, 2021 Table of Contents AGENDA……………………………………………………………………………………………….... 3 Workshop Agenda………….………......………………………………………………………………. 4 ROUNDTABLE INFORMATION……………………………………………………………………… 8 Genomics Roundtable One-Pager ............................................................................................................. 9 Strategic Plan ......................................................................................................................................... 12 Member Roster........................................................................................................................................ 13 ASHG Ancillary Meeting Agenda………….………………...........…………………………………… 18 WORKSHOP INFORMATION .............................................................................................................. 20 Planning Committee................................................................................................................................. 21 Planning Committee Biographies............................................................................................................ 22 Workshop Speaker Guidance…………...………………………..…………………………………….. 25 Speaker Biographies……….….…….…………………….……………………………………………. 29 BACKGROUND INFORMATION......................................................................................................... 32 Background Articles…………………………………………………………………………………… 33 Links to Additional Resources ............................................................................................................... 47
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Roundtable on Genomics and Precision Health Improving Diversity of the Genomics Workforce: A Workshop A Virtual Workshop October 5, 2021 12:00 PM – 3:30 PM ET Webcast link: https://www.nationalacademies.org/event/10-05-2021/improving-diversity-of-the- genomics-workforce-a-workshop STATEMENT OF TASK: A planning committee of the National Academies of Sciences, Engineering, and Medicine will organize and conduct a public workshop to examine the current state of diversity (e.g. racial, ethnic) of the genetics and genomics workforce, the factors that have contributed and are contributing to the diversity challenges, and possible steps forward that could lead to increasing workforce diversity as a way to improve access to genomic services. The workshop will feature invited presentations and discussions that may address topics such as: • Historical perspectives on racism and its impacts on the culture of the fields of genetics and genomics; • Ways in which the genetics/genomics workforce is or is not uniquely affected by structural racism; • Current and ongoing workforce diversity efforts of genetics/genomics professional organizations and other groups; • Implications of diversifying the workforce for patient care and access to genomic services; and • Next steps and roles for institutions, societies, associations, community organizations, and other stakeholders for fostering diversity, equity, and inclusion in this area. A proceedings in brief of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines. 12:00 pm Welcoming Remarks MICHELLE PENNY, Roundtable Co-Chair Vice President and Head of Genomics Goldfinch Bio
Board on Health Sciences Policy Roundtable on Genomics and Precision Health W. GREGORY FEERO, Roundtable Co-Chair Representing Journal of the American Medical Association Professor, Department of Community and Family Medicine, Geisel School of Medicine Faculty, Maine Dartmouth Family Medicine Residency Program 12:05 pm Introduction and Charge to the Workshop Speakers and Participants CHAZEMAN JACKSON, Workshop Planning Committee Co-chair Senior Director, Diversity Equity and Inclusion American Society of Human Genetics KATHERINE JOHANSEN TABER, Workshop Planning Committee Co-chair Vice President, Clinical Product Research & Partnerships Myriad Genetics SESSION I: EXPLORING WORKFORCE DIVERSITY ISSUES IN GENETICS/GENOMICS Moderator: Jacquelyn Taylor, Helen F. Petit Professor of Nursing, Founder and Executive Director, Center for Research on People of Color, Columbia University School of Nursing Session Objectives: • To examine the fundamental structural challenges that have resulted in a lack of diversity in the genetics/genomics workforce and explore new opportunities for change. • To discuss action-oriented efforts of medical and genetics professionals related to workforce diversity and consider how those efforts will attempt to address the structural issues facing the community. 12:10 pm Overview of Workforce Issues in Genetics/Genomics Barbara Harrison Genetic Counselor Assistant Professor Department of Pediatrics Howard University College of Medicine
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Sylvia Mann Supervisor, Genomics Section State of Hawaii Department of Health Director, Western States Regional Genetics Network Minority Genetic Professionals Network Omar Abdul-Rahman Director of Genetic Medicine Munroe-Meyer Institute University of Nebraska Medical Center 1:15 pm Discussion 1:35pm Break SESSION II: LEARNING FROM THOSE IN THE GENETICS/GENOMICS COMMUNITY Moderator: Sharon Terry, President and CEO, Genetic Alliance Session Objective: • To explore the relationship between the lack of diversity in the workforce and patient access to genetic services, understand why workforce diversity matters for patient care, and examine the ways in which professional societies and associations can make a difference in this area. 1:55 pm Voices From the Community Improving diversity and impact on outcomes for patients Altovise Ewing Senior Science Leader Genentech Damian Archer Assistant Dean for Multicultural Affairs Clinical Assistant Professor of Family Medicine Tufts University School of Medicine With
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Dallas Reed Division Chief of Genetics Tufts Children’s Hospital Director of Perinatal Genetics Tufts Medical Center LaTasha Lee Vice President Clinical & Social Research and Development National Minority Quality Forum Catalina Sol Executive Director La Clinica del Pueblo 2:50 pm Panel Discussion 3:15 pm Reflections from the Workshop and Final Comments CHAZEMAN JACKSON, Workshop Planning Committee Co-chair Senior Director, Diversity Equity and Inclusion American Society of Human Genetics KATHERINE JOHANSEN TABER, Workshop Planning Committee Co-chair Vice President, Clinical Product Research & Partnerships Myriad Genetics 3:30 pm Adjourn Workshop
GENOMICS ROUNDTABLE INFORMATION
The sequencing of the human genome is rapidly (e.g., journal articles). Specific issues and agenda opening new doors to research and progress in topics are determined by the Roundtable membership, biology, medicine, and health care. At the same time, and span a broad range of issues relevant to the these developments have produced a diversity of new translation process. issues to be addressed. Issues may include the integration and coordination of The National Academies of Sciences, Engineering, genomic information into health care and public health and Medicine has convened a Roundtable on including encompassing standards for genetic Genomics and Precision Health (previously the screening and testing, improving information Roundtable on Translating Genomic-Based Research technology for use in clinical decision making, for Health) that brings together leaders from academia, ensuring access while protecting privacy, and using industry, government, foundations and associations, genomic information to reduce health disparities. The and representatives of patient and consumer interests patient and family perspective on the use of genomic who have a mutual concern and interest in addressing information for translation includes social and the issues surrounding the translation of genome- behavioral issues for target populations. There are based research for use in maintaining and improving evolving requirements for the health professional health. The mission of the Roundtable is to advance community, and the need to be able to understand and the field of genomics and improve the translation of responsibly apply genomics to medicine and public research findings to health care, education, and policy. health. The Roundtable will discuss the translation process, identify challenges at various points in the process, Of increasing importance is the need to identify the and discuss approaches to address those challenges. economic implications of using genome-based research for health. Such issues include incentives, The field of genomics and its translation involves cost-effectiveness, and sustainability. many disciplines, and takes place within different economic, social, and cultural contexts, necessitating Issues related to the developing science base are also a need for increased communication and important in the translation process. Such issues could understanding across these fields. As a convening include studies of gene-environment interactions, as mechanism for interested parties from diverse well as the implications of genomics for complex perspectives to meet and discuss complex issues of disorders such as addiction, mental illness, and chronic mutual concern in a neutral setting, the Roundtable: diseases. fosters dialogue across sectors and institutions; illuminates issues, but does not necessarily resolve Roundtable sponsors include federal agencies, them; and fosters collaboration among stakeholders. pharmaceutical companies, medical and scientific associations, foundations, and patient/public To achieve its objectives, the Roundtable conducts representatives. For more information about the structured discussions, workshops, and symposia. Roundtable on Genomics and Precision Health, please Workshop summaries will be published and visit our website at nationalacademies.org/GenomicsRT collaborative efforts among members are encouraged or contact Sarah Beachy at 202-334-2217, or by e-mail at sbeachy@nas.edu. 500 Fifth Street, NW, Washington, DC 20001 Phone 202.334.2217 E-mail sbeachy@nas.edu nationalacademies.org/GenomicsRT
Roundtable on Genomics and Precision Health Membership W. Gregory Feero, M.D., Ph.D. (Co-Chair) JAMA Michelle Penny, Ph.D. (Co-Chair) Goldfinch Bio Naomi Aronson, Ph.D. Christa Lese Martin, Ph.D., FACMG BlueCross/BlueShield Association Geisinger Aris Baras, M.D., M.B.A. Mona Miller, M.P.P. Regeneron Pharmaceuticals American Society of Human Genetics Vence Bonham, Jr., J.D. Adele Mitchell, Ph.D. National Human Genome Research Institute Biogen Bernice Coleman, Ph.D., ACNP-BC, FAHA, FAAN, Jennifer Moser, Ph.D. American Academy of Nursing U.S. Department of Veterans Affairs Robert B. Darnell, M.D. Ph.D. Maximilian Muenke, M.D., FACMG The Rockefeller University / NY Genome Center American College of Medical Genetics and Genomics Stephanie Devaney, Ph.D. Susan E. Old, Ph.D. All of Us Research Program, NIH National Institute of Nursing Research Geoffrey Ginsburg, M.D., Ph.D. Kathryn Phillips, Ph.D. Global Genomic Medicine Collaborative (G2MC) University of California, San Francisco Jennifer Goldsack, MChem, M.A., M.B.A., Victoria M. Pratt, Ph.D., FACMG Digital Medicine Society (DiMe) Association for Molecular Pathology Eric Gustafson, Ph.D., Murray Ross, Ph.D. Merck & Co. Kaiser Foundation Health Plan, Inc. Jill Hagenkord, M.D., FCAP Wendy Rubinstein, M.D., Ph.D. Optum Genomics Food and Drug Administration Richard Hodes, M.D. Nadeem Sarwar, Ph.D. National Institute on Aging Eisai Inc. Geoff Hollett, Ph.D. Joan A. Scott, M.S., C.G.C. American Medical Association Health Resources and Services Administration Mira Irons, M.D. Sam Shekar, M.D., M.P.H. College of Physicians Philadelphia American College of Preventive Medicine Praduman Jain, M.S. Nonniekaye Shelburne, C.R.N.P., M.S., A.O.C.N., Vibrent Health National Cancer Institute Sekar Kathiresan, M.D. Geetha Senthil, Ph.D. Massachusetts General Hospital National Institute of Mental Health Muin Khoury, M.D., Ph.D. Nikoletta Sidiropoulos, M.D. Centers for Disease Control and Prevention University of Vermont Health Network Medical Group Katherine Johansen Taber, Ph.D. Charles Lee, Ph.D., FACMG Myriad Genetics The Jackson Laboratory for Genomic Medicine Ryan Taft, Ph.D., James Lu, M.D., Ph.D. Illumina Helix The National Academy of Sciences, National Academy of Engineering, and National Academy of Medicine work together as the National Academies of Sciences, Engineering, and Medicine (“the Academies”) to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
Jacquelyn Taylor, Ph.D. Columbia University Sharon Terry, M.A. Genetic Alliance Joyce Tung, Ph.D. 23andMe, Inc. Jameson Voss, M.D. U.S. Air Force Karen Weck, M.D. College of American Pathologists Catherine A. Wicklund, M.S., C.G.C. National Society of Genetic Counselors Huntington F. Willard, Ph.D. Geisinger National Precision Health Sarah Wordsworth, Ph.D. University of Oxford Alicia Zhou, Ph.D. Color Genomics Project Staff Sarah H. Beachy, Ph.D., Roundtable Director Kathryn Asalone, Ph.D., Associate Program Officer Samantha Schumm, Ph.D., Associate Program Officer Meredith Hackmann, Associate Program Officer Lydia Teferra, Research Assistant The National Academy of Sciences, National Academy of Engineering, and National Academy of Medicine work together as the National Academies of Sciences, Engineering, and Medicine (“the Academies”) to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
STRATEGIC PLAN Realizing the full potential of health for all through genomics VISION and precision health. We bring together diverse voices to encourage innovation MISSION and actions that foster the wide adoption of and equitable access to the benefits of genomics and precision health. As a group of committed stakeholders, we believe in… • Creating an inclusive and optimistic environment for discussion • Learning from successes and missteps in the field • Demanding reproducible evidence-based science • Sharing trustworthy information • Embracing interdisciplinary strategies • Optimizing data privacy and security • Advancing health equity in all that we do The Roundtable focuses its energy and resources on these priorities: Identify the competing barriers and facilitators of innovation for genomics-based DRIVE INNOVATION diagnostics, risk assessment tools, and therapies. IN GENOMICS AND PRECISION HEALTH Leverage opportunities to learn from and promote innovative approaches that can accelerate commercialization and integration to drive impact of genomics on precision health. SPUR THE ADOPTION Cultivate evidence-based practices across the health care and public health systems for OF GENOMICS-BASED adopting genomics and precision health. TOOLS AND PRECISION HEALTH APPROACHES Draw attention to gaps in adoption and their root causes and highlight potential solutions. Foster action related to underrepresentation and inequities in genomic research, ACHIEVE EQUITY workforce, and access to genomic services by people who need them. IN GENOMICS AND PRECISION HEALTH Look internally to improve the processes and practices the Roundtable employs to achieve its mission. SHAPE THE POLICY Accelerate the dissemination of actionable knowledge to shape practice and increase DIALOGUE ABOUT public awareness. GENOMICS AND PRECISION HEALTH Inform and influence how decisions are made. Precision Health | Inclusive of precision medicine, precision health is a broader, proactive and people- focused approach to health, relying on individual-focused care and everyday decision-making to better DEFINITIONS predict, prevent, and treat disease. Genetics | Study of heredity, genes, and genetic variation. Genomics | Study of the genome by using DNA sequencing and other technologies to understand gene structure, function, and regulation.
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Membership Roster W. Gregory Feero, M.D., Ph.D. (Co-Chair) Bernice Coleman Ph.D., ACNP-BC, FAHA, (Representing Journal of the American Medical FAAN Association) Director, Nursing Research Department, Performance Professor, Department of Community and Family Improvement Department Medicine, Geisel School of Medicine Nurse Practitioner, Heart Transplantation and Faculty, Maine Dartmouth Family Medicine Mechanical Circulatory Support Programs Residency Program Cedars-Sinai Michelle Penny, Ph.D. (Co-Chair) Robert B. Darnell, M.D. Ph.D. Vice President & Head of Genomics Heilbrunn Professor and Senior Physician Head, Goldfinch Bio Laboratory of Molecular Neuro-Oncology The Rockefeller University Naomi Aronson, Ph.D. Investigator, Howard Hughes Medical Institute Executive Director Founding Director and CEO Emeritus, New York Clinical Effectiveness and Policy Genome Center BlueCross BlueShield Association Stephanie Devaney, Ph.D. Aris Baras, M.D., M.B.A. Chief Operating Officer Senior Vice President All of Us Research Program Regeneron Pharmaceuticals National Institutes of Health General Manager Regeneron Genetics Center Sheri Schully, Ph.D. (for Stephanie Devaney) Deputy Chief Medical & Scientific Officer Jeffrey Reid, Ph.D. (for Aris Baras) All of Us Research Program Vice President, Head of Genome Informatics & National Institutes of Health Data Engineering Regeneron Pharmaceuticals Geoffrey Ginsburg, M.D., Ph.D. (Representing the Global Genomic Medicine Lyndon Mitnaul, Ph.D. (for Aris Baras) Collaborative (G2MC)) Senior Director Director, Center for Applied Genomics and Precision Research Program Management Medicine; Director MEDx; Professor of Medicine Regeneron Pharmaceuticals, Inc. and Pathology, Duke University School of Medicine; Professor of Biomedical Engineering, Vence Bonham, Jr., J.D. Duke Pratt School of Engineering, Professor, Acting Deputy Director School of Nursing National Human Genome Research Institute Duke University Teri Manolio, M.D., Ph.D. (for Vence Bonham) Jennifer Goldsack, MChem, M.A., M.B.A. Director Executive Director Division of Genomic Medicine Digital Medicine Society (DiMe) National Human Genome Research Institute National Institutes of Health Eric Gustafson, Ph.D. Director, Discovery Pharmacogenomics Merck Research Laboratories
Caroline Fox, M.D., M.P.H. (for Eric James Lu, M.D., Ph.D. Gustafson) Co-Founder & Chief Scientific Officer Vice President, Human Genetics and Helix Pharmacogenomics Merck Research Laboratories Elissa Levin, M.S., CGC (for James Lu) Vice President, Clinical Policy Jill Hagenkord, M.D. FCAP Helix Chief Medical Officer Optum Genomics Christa Lese Martin, Ph.D., FACMG Chief Scientific Officer Nick Seddon, M.A., M.Phil (for Jill Hagenkord) Director SVP, Head of Genomics Autism & Developmental Medicine Institute Optum Geisinger Richard J. Hodes, M.D. Mona Miller, M.P.P. Director, National Institute on Aging Chief Executive Officer National Institutes of Health American Society of Human Genetics Nalini Raghavachari, Ph.D. (for Richard David Nelson, Ph.D. (for Mona Miller) Hodes) American Society of Human Genetics Division of Geriatrics and Clinical Gerontology National Institute on Aging Adele Mitchell, Ph.D. Head of Clinical Genetics Geoff Hollett, Ph.D. Biogen Senior Science Policy Analyst American Medical Association Sally John, Ph.D. (for Adele Mitchell) Vice President, Translational Biology Mira Irons, M.D. Biogen President & CEO College of Physicians of Philadelphia Jennifer Moser, Ph.D. Genomic Medicine Program Praduman Jain, M.S. Office of Research and Development Chief Executive Officer U.S. Department of Veterans Affairs Vibrent Health Ronald Przygodzki, M.D. (for Jennifer Moser) Sekar Kathiresan, M.D. Director, Genomic Medicine Biomedical Director, Center for Genomic Medicine Laboratory Research and Development Massachusetts General Hospital Department of Veterans Affairs Muin Khoury, M.D., Ph.D. Maximilian Muenke, M.D., FACMG Director, Office of Public Health Genomics Chief Executive Officer Centers for Disease Control and Prevention American College of Medical Genetics and Genomics Charles Lee, Ph.D., FACMG Susan E. Old, Ph.D. Scientific Director and Professor Acting Deputy Director The Jackson Laboratory for Genomic Medicine National Institutes of Nursing Research Kunal Sanghavi, M.B.B.S., M.S., C.G.C. (for Jessica M. Gill, Ph.D., R.N., FAAN (for Susan Charles Lee) Old) Program Manager Lasker Clinical Research Scholar The Jackson Laboratory for Genomic Medicine Tissue Injury Branch, Division of Intramural Key Faculty and Lecturer Research University of Connecticut Genetic Counseling National Institutes of Nursing Research Program
Kathryn A. Phillips, Ph.D. Andrew N. Freedman, Ph.D. (for Nonniekaye Professor of Health Economics and Health Shelburne) Services Research Branch Chief, Clinical & Translational Founding Director, Center for Translational and Epidemiology Branch Policy Research on Personalized Medicine Epidemiology & Genetics Research Program (TRANSPERS) Division of Cancer Control and Population Sciences University of California, San Francisco National Cancer Institute Victoria M. Pratt, Ph.D. Nikoletta Sidiropoulos, M.D. (Representing Association for Molecular Pathology) Assistant Professor, Department of Pathology and Director, Pharmacogenomics and Molecular Genetics Laboratory Medicine Laboratories Director of Molecular Pathology, Department of Indiana University School of Medicine Pathology and Laboratory Medicine Larner College of Medicine Murray Ross, Ph.D. The University of Vermont Vice President Kaiser Foundation Health Plan, Inc. Katherine (Katie) Johansen Taber, Ph.D. Vice President, Clinical Product Research & Wendy Rubinstein, M.D., Ph.D. Partnerships Director, Personalized Medicine Myriad Genetics Food and Drug Administration Ryan Taft, Ph.D. Katherine Donigan, Ph.D. (for Wendy Vice President Rubinstein) Scientific Research Deputy Director, Personalized Medicine and Illumina, Inc. Molecular Genetics (acting) Center for Devices and Radiological Health Jacquelyn Taylor, Ph.D. Office of In Vitro Diagnostics and Radiological Professor of Nursing Health Director, Center for Research on People of Color U.S. Food and Drug Administration Columbia University School of Nursing Nadeem Sarwar, Ph.D., M.Pharm., Sharon Terry, M.A. M.R.Pharm.S., M.Phil. President and CEO President Genetic Alliance Eisai AiM Institute Joyce Tung, Ph.D. Joan A. Scott, M.S., CGC Vice President, Research Director 23andMe, Inc. Division of Services for Children with Special Health Needs Jameson D. Voss, M.D., M.P.H., FACPM Maternal and Child Health Bureau Major, USAF, MC, FS Health Resources and Services Administration Chief, AFMS Precision Medicine Air Force Medical Support Agency Geetha Senthil, Ph.D. Program Officer Mauricio De Castro Pretelt, M.D. (for Jameson National Institute of Mental Health Voss) National Institutes of Health Representing Air Force Medical Support Agency Sam Shekar, M.D., M.P.H. Clesson Turner, M.D. (for Jameson Voss) Representative, American College of Preventive Representing Air Force Medical Support Agency Medicine Karen Weck, M.D. Nonniekaye Shelburne, C.R.N.P., M.S., A.O.C.N. Professor of Pathology & Laboratory Medicine, Program Director Professor of Clinical Genetics Clinical and Translational Epidemiology Branch College of American Pathologists National Cancer Institute University of North Carolina
Patty Vasalos (for Karen Weck) Technical Manager, Proficiency Testing College of American Pathologists Catherine A. Wicklund, M.S., CGC (Representing National Society of Genetic Counselors) Director, Graduate Program in Genetic Counseling Past President, National Society of Genetic Counselors Associate Professor Department of Obstetrics and Gynecology Feinberg School of Medicine, Center for Genetic Medicine Northwestern University Huntington F. Willard, Ph.D. Chief Scientific Officer and SVP, Medical Affairs Genome Medical, Inc. Sarah Wordsworth, Ph.D. Professor and University Lecturer University of Oxford Health Economics Research Centre Nuffild Department of Population Health University of Oxford Alicia Zhou, Ph.D. Vice President Research and Scientific Affairs Color Genomics
National Academies of Sciences, Engineering, and Medicine Staff Contact Information Genomics Roundtable Sarah H. Beachy, Ph.D. Lydia Teferra Senior Program Officer Research Assistant Board on Health Sciences Policy Board on Health Sciences Policy National Academies of Sciences, Engineering, and National Academies of Sciences, Engineering, and Medicine Medicine 500 Fifth Street NW 500 Fifth Street NW Washington, DC 20001 Washington, DC 20001 Phone: 202-334-2217 Email: lteferra@nas.edu Fax: 202-334-1329 E-mail: sbeachy@nas.edu Board on Health Sciences Policy Kathryn Asalone, Ph.D. Associate Program Officer Andrew M. Pope, Ph.D. Board on Health Sciences Policy Senior Board Director National Academies of Sciences, Engineering, and Board on Health Sciences Policy Medicine National Academies of Sciences, Engineering, and 500 Fifth Street NW, Room 832 Medicine Washington, DC 20001 500 Fifth Street NW, Room 829 E-mail: kasalone@nas.edu Washington, DC 20001 Phone: 202-334- 1739 Meredith Hackmann Fax: 202-334-1329 Associate Program Officer E-mail: apope@nas.edu Board on Health Sciences Policy National Academies of Sciences, Engineering, and Bridget Borel Medicine Program Coordinator 500 Fifth Street NW, Room 815 Board on Health Sciences Policy Washington, DC 20001 National Academies of Sciences, Engineering, and Phone: 202-334-2914 Medicine E-mail: mhackmann@nas.edu 500 Fifth Street NW, W807 Phone: 202-334-3232 Samantha Schumm E-mail: BBorel@nas.edu Associate Program Offiver Board on Health Sciences Policy National Academies of Sciences, Engineering, and Medicine 500 Fifth Street NW Washington, DC 20001 Email: SSchumm@nas.edu Last updated: 09.17.21
Board on Health Sciences Policy SAVE THE DATE! Realizing the Full Potential of Health for All Through Genomics and Precision Health: A discussion with the National Academies Genomics Roundtable An Ancillary Event to ASHG’s Annual Meeting A Virtual Meeting October 20, 2021 7:00 – 8:00 PM ET Zoom Webinar Link: TBD AGENDA: 7:00 pm ET Welcoming Remarks GEOFFREY GINSBURG, M.D., PH.D. Director, Duke Center for Applied Genomics & Precision Medicine Professor, Medicine, Pathology, and Biomedical Engineering Duke University Medical Center 7:05 pm Keynote Talk VENCE BONHAM, JR, J.D. Acting Deputy Director National Human Genome Research Institute National Institutes of Health 7:20 pm How Equity Can Enable Adoption and Innovation MIRA IRONS, M.D. President and CEO College of Physicians of Philadelphia
JOYCE TUNG, PH.D. Vice President, Research 23andMe 7:30 pm Getting Involved in the Roundtable’s Work SARAH BEACHY, PH.D. Director, Roundtable on Genomics and Precision Health Board on Health Sciences Policy The National Academies of Sciences, Engineering, and Medicine 7:30 pm Questions and Open Dialogue with the Community Moderated by: Geoffrey Ginsburg 7:55 pm Closing Comments 8:00 pm Meeting Adjourns 2
WORKSHOP INFORMATION
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Improving Diversity of the Genomics Workforce: A Workshop Planning Committee Members Chazeman Jackson (Co-Chair), American Society of Human Genetics Katherine Johansen Taber (Co-Chair), Myriad Genetics Vence Bonham, National Human Genome Research Institute Neil Hanchard, National Human Genome Research Institute Erica Ramos, Genome Medical Sharon Terry, Genetic Alliance Catherine Wicklund, Northwestern University
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Improving Diversity of the Genomics Workforce: A Workshop Planning Committee Member Biographies Chazeman S. Jackson (co-chair), Ph.D., M.A., the Senior Director, Diversity, Equity & Inclusion of the American Society of Human Genetics, is an experienced health science researcher, public health administrator, and seasoned policy advisor. Most recently, Dr. Jackson served as a senior science policy analyst and the lead for the National Institutes of Health portfolio within the Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services. Dr. Jackson joined the department in 2010 as an Emerging Leader Fellow and a health science administrator at the National Institute on Minority Health and Health Disparities. From 2012 - 2016, she played an essential role, as health science advisor, developing and implementing the HHS Office of Minority Health’s research and science policy agenda. Dr. Jackson earned a Bachelor of Arts degree in humanities with an emphasis in philosophy from Tougaloo College, a Master of Arts degree in biology from American University, and a Doctor of Philosophy in microbiology from Howard University. As a health advocate, Dr. Jackson commits her time and talents to a spectrum of public services that impact her community. She has received several honors and distinctions, including the American University Alumni Recognition Award and the United Negro College Fund’s Outstanding Young Alumnus in 2004. She was an inaugural recipient of the Gates Millennium Scholarship and was a 2009 Christine Mirzayan Science and Technology Policy Fellow with the National Academies of Medicine's Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities. Dr. Jackson has displayed commitment throughout her career to utilizing her scientific acumen and leadership skills to improve health and reduce the burden of disease, especially among vulnerable and marginalized groups. Katherine Johansen Taber (co-chair), Ph.D., is the Vice President of Clinical Product Research & Partnerships at Myriad Genetics. She was formerly the Director of Science Policy at the American Medical Association, with a focus on educating physicians about the clinical implementation of genomics and precision medicine, and on identifying and managing genomics and precision medicine policy issues affecting health care providers. She has held numerous positions on advisory committees and boards of organizations working to improve clinical adoption of genomic technology. Katie earned her PhD in Molecular, Cell, and Developmental Biology at the University of California, Los Angeles, and conducted post-doctoral research at the USDA. She has held teaching appointments at UCLA, California State Polytechnic University, University of Idaho, and Columbia College Chicago. Vence Bonham, Jr., J.D., received his bachelor of arts from James Madison College at Michigan State University and his juris doctor degree from the Moritz College of Law at the Ohio State University. Mr. Bonham was a fellow in the American Association of Medical Colleges Health Services Research Fellowship Program. Mr. Bonham was a faculty member at Michigan State University in the Colleges of Medicine and Law. Since 2003, Mr. Bonham has served as an associate investigator in the National Human Genome Research Institute (NHGRI) within the Division of Intramural Research's Social and Behavioral Research Branch. He leads the Health Disparities Genomics Unit, which conducts research that evaluates
Board on Health Sciences Policy Roundtable on Genomics and Precision Health approaches to integrating new genomic knowledge and precision medicine into clinical settings without exacerbating inequities in healthcare delivery. His research focuses primarily on the social influences of new genomic knowledge, particularly in communities of color. He studies how genomics influences the use of the constructs of race and ethnicity in biomedical research and clinical care and the role of genomics in health inequities. The Bonham group has expanded to study sickle cell disease, a condition with a significant health disparity impact both in the United States and globally. Mr. Bonham also serves as the senior advisor to the NHGRI director on genomics and health disparities. This role complements Mr. Bonham's research work as it enables him to ask conceptually based research questions grounded in the science of health disparities and genomics. From 2011 until 2015, Mr. Bonham was the project leader and co-curator for the NHGRI/Smithsonian exhibition “Genome: Unlocking Life’s Code.” Neil Hanchard M.B.B.S., D.Phil., received his MD (MBBS with Honours) from the University of the West Indies in Kingston, Jamaica, after which he was award the Jamaica Rhodes Scholarship to the University of Oxford, UK. There, he completed a D.Phil. in Human Genetics and Clinical Medicine in the laboratory of Prof. Dominic Kwiatkowski, where he worked on population differentiation, genome variation, and natural selection in the Major Histocompatibility Complex. After returning to Jamaica to study sickle cell disease and severe childhood malnutrition as a clinical research scholar, he moved to the US to do his pediatric residency at the Mayo Clinic in Rochester, Minnesota, before completing a Medical Genetics fellowship at Baylor College of Medicine (BCM) in Houston, Texas. Soon after, he started his own lab as a tenure-track physician scientist in the Department of Molecular and Human genetics at BCM, focusing on the genetics of complex childhood diseases in diverse populations. In addition, Dr Hanchard cared for patients with rare genetic disorders and directed a medium throughput core genetics laboratory, in addition to mentoring and teaching graduate students, medical residents, and medical students. His research has provided insight to the population genetics of the mutation that causes sickle cell disease, identified novel genes in the development of congenital cardiovascular disorders and rare Mendelian disorders, and made inroads to understanding the pathogenesis of diabetic embryopathy, severe childhood malnutrition and transfusion alloimmunization in sickle cell disease. Dr. Hanchard has served in multiple advisory positions for research institutions, the American Society for Human Genetics (ASHG), and genetics journals, and he was the first Early-Career board member of ASHG. He is a fellow of the American College of Medical Genetics and the Society for Pediatric Research. Dr. Hanchard is the current Chair of the Genome Analysis working group of the H3Africa Consortium and an NIH Distinguished Scholar. Erica Ramos, M.S., C.G.C., is the Vice President of Population Genomics at Genome Medical, a national medical practice with the mission of integrating genomics into everyday health care. She is responsible for developing the strategy, value proposition and overall approach to population-scale health initiatives utilizing genetics and genomics and is passionate about establishing genomics as a resource for life-long care and integrating broad-based screening approaches with indication-based diagnostic services. In her previous role as Director of Clinical & Product Development at Geisinger National Precision Health, she and her team developed and integrated scalable, efficient and innovative clinical programs and products to accelerate the
Board on Health Sciences Policy Roundtable on Genomics and Precision Health responsible adoption and integration of genomics into preventive care and population health. Prior to joining Geisinger, Erica was an Associate Director of Market Development for Precision Health & Screening at Illumina and practiced as a clinical genetic counselor for 11 years. Erica is a nationally recognized leader in the genetic counseling community, serving as the 2018 President of the National Society of Genetic Counselors, the leading professional organization for genetic counselors more than 4,000 members strong, and on the All of Us Research Program Advisory Panel. She is also an adjunct professor in the Genetic Counseling Department at Augustana University and shares her enthusiasm for genomics, genetic counseling and Wisconsin sports on Twitter at @ERamosSD. Sharon F. Terry, M.A., is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products and tools for ordinary people to take charge of their health and to further biomedical research. As ‘just a Mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. With others, she co-discovered the ABCC6 gene, patented it to ensure ethical stewardship in 2000, and assigned their rights to the foundation. She subsequently developed a diagnostic test and conducts clinical trials. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. Her story is the topic of her TED Talk and TED Radio Hour. Catherine A. Wicklund, M.S., C.G.C., is the Director of the Graduate Program in Genetic Counseling at Northwestern University and an Associate Professor in the Department of Obstetrics and Gynecology. She has over 20 years of experience in clinical genetic counseling and has provided prenatal and pediatric genetic services. She served on the Board of Directors of the National Society of Genetic Counselors first as Region V Representative, then as Secretary and was President in 2008. Currently she is a member of the Illinois Department of Public Health’s Genetic and Metabolic Diseases Advisory Committee, the Advisory Committee on Hereditable Disorders in Newborns and Children, the American Society of Human Genetics representative on the Scientific Program Committee of the 2016 International Congress of Human Genetics and the NSGC representative on the Institute of Medicine Roundtable on Translating Genomic Based Research for Health. Ms. Wicklund’s research interests include issues regarding whole genome/exome sequencing and personalized medicine, psychosocial and counseling issues, and professional issues including workforce and access to and delivery of genetic services. She is a co-investigator on the Electronic Medical Records and Genomics (eMERGE) Network, which aims to bring personalized medicine into broader clinical use. She received her Master of Science degree in Genetic Counseling from the University of Texas- Graduate School of Biomedical Sciences and is a diplomat of the American Board of Genetic Counseling.
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Roundtable on Genomics and Precision Health Improving Diversity of the Clinical Genomics Workforce SPEAKER GUIDANCE: CONTEXT AND QUESTIONS The Genomics Roundtable completed a strategic planning process and have started to implement our plans in 2021. One of our working groups, the Equity Group, seeks to foster action related to underrepresentation and inequities in genomic research, the workforce, and access to genomic services by people who need them. As a first step and the goal of this public workshop, the Equity group would like to host a discussion on the actionable next steps for increasing diversity in the clinical genomics workforce. Session I Objectives • To examine the fundamental structural challenges that have resulted in a lack of diversity in the genetics/genomics workforce and explore new opportunities for change. • To discuss action-oriented efforts of medical and genetics professionals related to workforce diversity and consider how those efforts will attempt to address the structural issues facing the community. Key Questions for Speakers: 1. As many of you have spent much of your careers trying to improve diversity, equity, and inclusion, what has recently changed (or remains unchanged) that makes this point in time different? 2. What is one major change at the individual level and one at the institutional level that if it could happen, would significantly improve the trajectory of workforce diversity for the better? 3. What different approaches need to be considered for (a) recruiting new staff/students, (b) onboarding new staff/students and then (c) retaining them in the program/workplace? 4. How have workforce policies or programs evolved over the years and what challenges remain? What is needed to overcome those challenges? 5. What forces in the genetics/genomics field have thwarted diversity, equity, and inclusion? What more can be done on the institutional and individual level to advance workforce diversity? 6. What can the Roundtable on Genomics and Precision Health do to help increase the diversity of the genomic workforce?
Session II Objectives • To explore the relationship between the lack of diversity in the workforce and patient access to genetic services, understand why workforce diversity matters for patient care, and examine the ways in which professional societies and associations can make a difference in this area. Key Questions for Speakers: 1. What do you believe is the link between workforce diversity and patient care/patient access to genomic services? 2. How do we translate what we heard about in Session 1 into improved care for patients? 3. What are 1 or 2 obstacles that you've heard about during the workshop that deserve more attention? Are there potential solutions that could start to address these barriers? 4. What have you heard during the workshop that you would suggest others take back to improve diversity, equity, and inclusion at their respective organizations? 5. What didn't we cover during the workshop that needs attention? What other stakeholders need to be part of the conversation? 6. What can the Roundtable on Genomics and Precision Health do to increase the diversity of the genomic workforce? SESSION I: EXPLORING WORKFORCE DIVERSITY ISSUES IN GENETICS/GENOMICS Moderator: Jacquelyn Taylor, Helen F. Petit Professor of Nursing, Founder and Executive Director, Center for Research on People of Color, Columbia University School of Nursing 12:10 pm Overview of Workforce Issues in Genetics/Genomics Barbara Harrison Genetic Counselor Assistant Professor Department of Pediatrics Howard University College of Medicine Sylvia Mann Supervisor, Genomics Section State of Hawaii Department of Health Director, Western States Regional Genetics Network Minority Genetic Professionals Network Omar Abdul-Rahman Director of Genetic Medicine Munroe-Meyer Institute University of Nebraska Medical Center
1:15 pm Discussion 1:35pm Break SESSION II: LEARNING FROM THOSE IN THE GENETICS/GENOMICS COMMUNITY Moderator: Sharon Terry, President and CEO, Genetic Alliance 1:55 pm Voices From the Community Improving diversity and impact on outcomes for patients Altovise Ewing Senior Science Leader Genentech Damian Archer Assistant Dean for Multicultural Affairs Clinical Assistant Professor of Family Medicine Tufts University School of Medicine with Dallas Reed Division Chief of Genetics Tufts Children’s Hospital Director of Perinatal Genetics Tufts Medical Center LaTasha Lee Vice President Clinical & Social Research and Development National Minority Quality Forum Catalina Sol Executive Director La Clinica del Pueblo 2:50 pm Panel Discussion 3:15 pm Reflections from the Workshop and Final Comments LOGISTICAL INFORMATION The meeting will be held by Zoom videoconference. Briefing materials and a link to join the meeting will be sent to you about two weeks prior to the meeting date. Please provide us with your current short biosketch and any background materials that you would like us to share with the Roundtable members before your talk.
Please join the meeting at least 10 minutes prior to the start of your session. PowerPoint slides are optional, but if you plan to use slides, please email them to Lydia Teferra (lteferra@nas.edu) by Monday, October 4, 2021. We will look to you to screen share your slides unless you instruct us to do so. EXPECTED AUDIENCE In addition to the 35 Roundtable members we expect to participate in this virtual workshop, the meeting is open to the public and we expect hundreds of attendees. Members and the public will likely represent a broad array of stakeholders including academic and industry experts, regulators, clinicians, patients, and patient advocates who will be well-informed about genetics and genomics with varying degrees of experience related to workforce DEI efforts. Thank you very much for your willingness to share your thoughts, time, and expertise with the Genomics Roundtable!
Board on Health Sciences Policy Roundtable on Genomics and Precision Health Improving Diversity of the Genomics Workforce: A Workshop October 5, 2021 Speaker Biographies Omar Abdul-Rahman, M.D., is the current Director of the Department of Genetic Medicine and Friedland Professor at the UNMC Munroe-Meyer Institute. He formerly served as Division Director for Medical Genetics and Vice Chair for Faculty Development in the Department of Pediatrics at the University of Mississippi Medical Center (UMMC). He also was the founding director of UMMC’s Center of Genetic Medicine. Dr. Rahman’s practice is focused primarily on adult and pediatric patients in a general genetics clinic as well as inpatient consults for pediatrics, prenatal, and adult genetics. He also has participated in the teaching of genetics to the first-year medical school class with a focus on genetic principles, common genetic conditions, and pharmacogenetics. Damian Archer, M.D., became a member of the Tufts faculty in 2012 as a clinical instructor and is currently the Assistant Dean for Multicultural Affairs and an Assistant Clinical Professor in the Department of Family Medicine, as well as Associate Director of the Tufts Student Service Scholars program. He is also the Chief Medical Officer at North Shore Community Health Center in Salem, MA, and is a board-certified Family Medicine physician. He completed his undergraduate degree at The University of Western Ontario, London, Ontario, Canada with a B.Sc. in Chemistry with Distinction in 2001. He was a successful MBBS (MD) and B. Med. Sci. with Honors candidate at the University of the West Indies, Bahamas Clinical Campus in 2006. He finished his family medicine training at the St. Luke’s Family Practice Residency Program at Aurora St. Luke’s Hospital in Milwaukee, Wisconsin as Chief Resident of the Family Medicine program in 2011. Dr. Archer sits on the committee on Diversity at the Massachusetts Medical Society and has a passion for developing diverse and inclusive learning and working environments. Altovise T. Ewing, Ph.D., L.C.G.C., is a clinician-scientist with 10+ years of genetic counseling and health disparities research experience. She earned a Ph.D. in Genetics and Human Genetics with a specialization in Genetic Counseling from Howard University. She completed a cancer health disparities postdoctoral research fellowship at The Johns Hopkins University Bloomberg School of Public Health. Altovise has dedicated her career to ensuring that emerging genetic and genomic resources, services and technologies do not further exacerbate health disparities and inequities. Her unwavering passion for health equity and inclusion has facilitated opportunities for her to engage with various audiences in the genetics
and genomics industry. She also has experience serving as a trusted and committed healthcare liaison to marginalized, medically underserved, and underrepresented communities participating in research. Her scholarship focuses on inclusion of diverse patient populations in cancer genetics research and the development of ethically sound educational strategies to better serve and address the needs of medically underserved populations. Currently, Altovise serves as a Senior Science Lead on the Global Health Equity and Population Science Strategy (HEPS) team at Genentech. Barbara Harrison, M.S., C.G.C., graduated with a Bachelor’s degree in Biology from University of Maryland, College Park and received a Master’s degree in Genetic Counseling from University of Pittsburgh. She is certified by the American Board of Genetic Counselors and currently serves on its Board of Directors. She is currently an Assistant Professor at Howard University and teaches graduate students, medical students, and medical residents in various specialties, in the areas of genetics, genetic testing, genetic counseling and ethics. In addition to her academic duties, she provides genetic counseling services at Howard University Hospital for a variety of referral reasons, in areas including prenatal (primary), pediatric, and adult genetics. She is the Assistant Director for Community Outreach and Education for the HU Center for Sickle Cell Disease. She was recently awarded the 2020 NSGC Natalie Weissberger Paul National Achievement Award, the organization’s most distinguished honor. In the community, Mrs. Harrison volunteers with the Sickle Cell Association of the National Capital Area, and is an active member of Metropolitan Baptist Church in Largo, MD. LaTasha Lee, Ph.D., M.P.H., is the current vice president of Clinical & Social Research and Development at the National Minority Quality Forum (NMQF). She is responsible for the oversight and implementation of research projects and programs focused on reducing patient risk and identifying optimal care to reduce health disparities and bring about health equity. She also provides input into the overall strategy for research partnerships and health equity research for NMQF. Prior to joining the NMQF she was the Senior Manager of Partnership Engagement of the Sickle Cell Disease Clinical Trials Network (SCD CTN) at the ASH Research Collaborative. On the global front, she was co-lead on the development of a Newborn Screening and Early Interventions Consortia for SCD in sub-Saharan Africa. A knowledgeable, skilled and energetic scientist and public policy advisor with experience on Capitol Hill, Dr. Lee has worked very closely with Congress and federal agencies to monitor biomedical research and access to care policy related to various diseases impacting communities of color. She earned her Ph.D. in Integrative Biology with a concentration on Neuroscience from Florida Atlantic University, a M.P.H. in epidemiology from The George Washington University (GWU), and a Bachelor’s in Biology from Florida A&M University. Dr. Lee is an Adjunct Assistant Professor at GWU School of Medicine and Health Sciences and the recipient of numerous awards including the 2018 National Minority Quality Forum’s 40 Under 40 Leaders in Minority Health, Congressional Black Caucus Health Braintrust Staff Leadership Award in recognition of efforts to end health disparities and the Distinguished Alumni Award from Florida Atlantic University. Sylvia Mann, M.S., C.G.C., is the Project Director for the Western States Regional Genetics Network. She is a certified genetic counselor who has been the Hawaii State Genetics Coordinator since the Genetics Program was started within the Department of Health in 1993. In her position, Ms. Mann has responsibility for assessment, assurance and policy development in
the areas of genetics, newborn screening, birth defects and other related areas such as chronic disease. She has also been the principal investigator on several federally funded projects to assess the genetic service and newborn screening needs of professionals and families; using the needs assessment information to plan activities to address the identified needs; and implement and evaluate the activities. In addition to her state and regional work, Ms. Mann has served on regional and national committees including the Secretary’s Advisory Committee on Genetics, Health and Society. Ms. Mann received her Master’s of Science degree in human genetics and genetic counseling from Sarah Lawrence College in 1988. Dallas Reed, M.D., is a double-boarded obstetrician/gynecologist and medical geneticist who has a passion for equity and inclusion, telemedicine, genetics education, and providing sensitive and culturally competent care to women and families during pregnancy and when confronted with uncertainty around a genetic diagnosis. She has clinical expertise with prenatal, pediatric, adult, and cancer genetics, as well as preconception, obstetrics, and gynecologic care. Dr. Reed grew up in Plano, TX, and is a graduate of historically black institution Dillard University in New Orleans, LA, where she received a B.S. in Biology. She joined the Boston University School of Medicine Early Medical School Selection Program (BUSM EMSSP) as a Sophomore and matriculated into the medical school after graduation, where she earned her M.D. degree. She is an Assistant Professor in OB/GYN at Tufts University School of Medicine. She is the Division Chief of Genetics in the Department of Pediatrics at Tufts Children’s Hospital; Director of Perinatal Genetics and Attending Physician in the Department of OB/GYN at Tufts Medical Center. Dr. Reed holds several leadership responsibilities, including: Chair of the Tufts Medical Center Physicians Organization’s (TMC PO) Telemedicine Steering Committee, an inaugural member of the TMC PO Diversity and Inclusion Committee, and a member of the TMC PO Women in Medicine and Science Committee and Policy and Procedures Committee. At Tufts University School of Medicine (TUSM) she is a member of the Admissions Committee and Sub- committee and inaugural member of the Anti-racism Task Force (charged with creating an anti- racist medical school curriculum). Catalina Sol, M.P.H., has more than 25 years of public health and direct service provision with underserved communities and Latino immigrants. Prior to her selection as Executive Director in 2018, Ms. Sol served on La Clínica’s leadership team in several roles, including HIV Department Director, where she led HIV Prevention and Care programs, and Chief Programs Officer, where she was responsible for the overall strategic direction and integration of programs. She is a current fellow of the Robert Wood Johnson Interdisciplinary Research Leaders program and sits on the Board of Directors of the DC Primary Care Association. Ms. Sol received a Master in Public Health from Johns Hopkins University and a Bachelor’s from Georgetown University.
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