Roundtable on Genomics and Precision Health Fall 2021 Workshop

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Roundtable on Genomics and Precision Health Fall 2021 Workshop
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
Roundtable on Genomics and Precision Health Fall 2021 Workshop
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
Roundtable on Genomics and Precision Health Fall 2021 Workshop
AGENDA
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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