Community Engagement in Genomics Working Group

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