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The NHGRI Community Engagement in Genomics Working Group aims to engage communities to ensure that genomics and genomic medicine benefit all.

Overview

Community Engagement 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

Members

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:

Contacts

Carla Easter, Ph.D.
Carla Easter, Ph.D.
  • Branch Chief
  • Education and Community Involvement Branch
Christina R. Daulton, M.A.
Christina R. Daulton, M.A.
  • Education Outreach Specialist
  • Education and Community Involvement Branch

Last updated: August 21, 2019