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, Patient Advocacy, National Patient Advocate Foundation

• Faseeha Altaf, Vice President, American Muslim Health Professionals
• Maria Alvarez, Ph.D., Professor and Coordinator of Biology, RISE and BUILD Program Director, El Paso Community College
• Kellan Baker, Senior Fellow, LGBT Research and Communications Project, Center for American Progress
• Ada Bends, Crow (Apsáalooke) Nation Tribal Member
• Jermane Bond, Ph.D., Co-Founder & CEO, Health Equity Analytics Lab
• Ysabel Duron, Founder and CEO, Latinas Contra Cancer
• Ella Greene-Moton, Community Education Coordinator, Center for Public Health and Community Genomics, University of Michigan, School of Public Health, Ann Arbor
• Suzanne Held, Ph.D., Professor of Community Health, Montana State University, Bozeman
• Chanita Hughes Halbert, Ph.D., Associate Dean for Assessment & Evaluation, Professor, Department of Psychiatry & Behavioral Sciences, Endowed Chair for Cancer Equity, Hollings Cancer Center, Medical University of South Carolina
• Jean Jenkins, Ph.D., Clinical Genomics Consultant & Creator of DNAandU
• Rev. Leland Jones, DMin, Pastor, Greater New Light Missionary Baptist Church
• James O'Leary, Chief Innovation Officer, Genetic Alliance
• Alma McCormick, Executive Director, Messengers for Health, Crow Nation
• Sharon Plon, M.D., Ph.D., Professor, Baylor College of Medicine
• Kate Reed, Director, Clinical & Continuing Education Program, The Jackson Laboratory
• Mary Jackson Scroggins, Founding Partner, Pinkie Hugs, LLC and Co-Founder, In My Sister's Care
• Patricia Spears, Scientific Research Manager and Patient Advocate at UNC Lineberger Comprehensive Cancer Center
• Erik Stegman, J.D., Executive Director, Center for Native American Youth
• Lorelei Walker, Ph.D. M.P.H., Advisor, Health Equity Circle, University of Washington, Strategy Team Leader, Sound Alliance
• Christine Wilson, Health Care Communications Consultant, Foxhall Communications Strategies

NHGRI Representatives

• Christina Daulton, Education Outreach Specialist, Education and Community Involvement Branch, Division of Policy, Communications, and Education
• Carla Easter, Ph.D., Chief, Education and Community Involvement Branch, Division of Policy, Communications, and Education
• Michael Hahn, Scientific Program Analyst, Office of the Director
• Nicole Lockhart, Ph.D., Heath Sciences Administrator, Division of Genomics and Society
• Laura Lyman Rodriguez, Ph.D., Director, Division of Policy, Communications, and Education