Community Engagement in Genomics Working Group

Community Engagement in Genomics Working Group May 24, 2017

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

Overview

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, and inform the leadership of NHGRI of issues relevant to its portfolio of genomics research and related programs.

The working group is composed of community liaisons and health advocates representing diverse populations, who:

  • Assess the gaps and needs of diverse communities related to genomics and genomic medicine.
  • Develop programs and disseminating tools and resources to address identified gaps and needs.
  • Provide input about NHGRI activities, particularly about their ability to reach all communities and to increase genomic literacy.
  • Work in partnership with NHGRI to build relationships and trust with communities and to increase understanding of diverse communal views and priorities relevant to genomics.
  • Identify potential areas of synergy or collaboration among communities, NHGRI, other National Institutes of Health institutes or centers and national and international organizations.

Members

Co-Chairs:

  • Greta Goto, M.B.A.
    Founding Member, Prader-Willi Syndrome Alaska Parent Group
  • Maya Sabatello, LLB, Ph.D.
    Associate Professor, Medical Sciences (in Medicine)
    Center for Precision Medicine and Genomics, Department of Medicine
    Associate Professor, Medical Sciences (Medical Humanities and Ethics)
    Division of Ethics, Department of Medical Humanities and Ethics; Co-Director, Precision Medicine: Ethics, Politics and Culture Project;
    Columbia University

Members:

  • Rebecca Bakal, M.P.H.
    Program Manager, Health Equity and Assessment Research
    Sinai Urban Health Institute
  • Kellan Baker, Ph.D.
    Executive Director
    Whitman-Walker Institute
  • Gwen Darien
    Executive Vice President, Patient Advocacy and Engagement
    National Patient Advocate Foundation
  • Gregory Diggs-Yang, Ph.D.
    Assistant Director, Stacey Nicholas Office of Diversity and Inclusion
    University of California, Irvine
  • Brittany Hollister, Ph.D.
    Academic Program Specialist
    University of Florida, Genetics Institute
  • Alma McCormick
    Executive Director, Messengers for Health
    Crow Nation
  • Ella Greene-Moton
    Administrator, Community Based Organization Partners (CBOP) Community Ethics Review Board (CERB)
    Independent Contractor, Community-Academic Bridge
  • Alicia Santiago, Ph.D.
    Program Director, Directorate for STEM Education
    National Science Foundation

Ad Hoc:

  • Michael Hahn

    Tribal Engagement Lead
    NIH All of Us Research Program

Contacts