Community Engagement in Genomics Working Group

The NHGRI Community Engagement in Genomics Working Group (CEGWG) was established in 2017 as a working group of the National Advisory Council for Human Genome Research. The goals of the working group are to facilitate NHGRI's understanding of community perspectives and needs about genomics, engage and educate diverse communities about genomics, inform the leadership of NHGRI of issues relevant to its portfolio of genomics research and related programs.

The working group is comprised of community liaisons and health advocates representing diverse populations, works to accomplish its mission and goals by:

• Assessing the gaps and needs of diverse communities related to genomics and genomic medicine.
• Developing programs and disseminating tools and resources to address identified gaps and needs.
• Providing input about the activities of the Division of Policy, Communications, and Education, particularly about their ability to reach all communities and to increase genomic literacy.
• Working in partnership with NHGRI to build relationships and trust with communities and to increase understanding of diverse communal views and priorities relevant to genomics.
• Identifying potential areas of synergy or collaboration among communities, NHGRI, other National Institutes of Health Institutes/Centers, and national and international organizations

Chair:

• Gwen Darien
  Executive Vice President for Patient Advocacy and Engagement
  National Patient Advocate Foundation

Members: 

• Kellan Baker
  Centennial Scholar, Department of Health Policy and Management
  Johns Hopkins School of Public Health

• Jermane Bond, Ph.D.
  Senior Director, Quality Measurement
  National Quality Forum

• Greta Goto
  Life-long Alaskan
  Founding Member, Prader-Willi Syndrome Alaska Parent Group
  Special Projects Manager, Stone Soup Group*

• Suzanne Held, Ph.D.
  Professor of Community Health
  Montana State University, Bozeman

• Rev. Leland Jones, D.Min.
  Pastor, Greater New Light Missionary Baptist Church

• Alma McCormick
  Executive Director, Messengers for Health
  Crow Nation

• Ella Greene-Moton
  Community Education Coordinator
  Center for Public Health and Community Genomics
  University of Michigan, School of Public Health, Ann Arbor

• Kate Reed
  Director, Clinical and Continuing Education Program
  The Jackson Laboratory

• Mary Jackson Scroggins
  Founding Partner, Pinkie Hugs, LLC
  Co- Founder, In My Sister's Care

• Maya Sabatello, L.L.B., Ph.D.
  Assistant Professor of Clinical Bioethics
  Department of Psychiatry
  Co-Director, Precision Medicine: Ethics, Politics and Culture Project
  Institute for the Study of Human Rights
  Columbia University

• Alicia Santiago, Ph.D.
  Science Advisor and Diversity Consultant
  Twin Cities PBS

* An Alaska statewide non-profit that helps support families who care for children with special needs.

NHGRI Representatives:

• Carla Easter, Ph.D.
  Chief, Education and Community Involvement Branch, Division of Policy, Communications, and Education
   
• Christina Daulton, M.A.
  Education Outreach Specialist, Education and Community Involvement Branch, Division of Policy, Communications, and Education