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Sustaining Community Engagement in Genomics Research: A Workshop

Completed

This workshop examined how researchers could more meaningfully engage and sustain interactions with historically underrepresented communities in research to foster their participation in genomics and precision health studies.

Description

A planning committee of the National Academies of Sciences, Engineering, and Medicine will organize and conduct a public workshop to examine how researchers could more meaningfully engage and sustain interactions with historically underrepresented communities in research to foster their participation in genomics and precision health studies. The overarching goal of the workshop is to help improve the quality of genomics research by understanding where obstacles to sustained community involvement remain.
The workshop may include invited presentations and discussions to:

  • Understand limitations, both logistical (e.g., funding) and structural (e.g., past harms, lack of trustworthiness), to sustained community outreach and discuss possible solutions to those obstacles.
  • Examine opportunities for researcher trainings related to sustained community outreach and engagement in genomics research.
  • Discuss community engagement methods for genomics research with foundations, societies, patient groups, and other organizations about lessons learned from how they fund, engage, form, and measure success of partnerships with communities, other foundations/organizations, and researchers.
  • Explore how community engagement methods for genomics research might differ when working with various underrepresented communities (e.g. LGBTQIA+, people with disabilities, racially minoritized groups, indigenous populations, women, geographically isolated groups).

The planning committee will organize the workshop, develop the agenda, select and invite speakers and discussants, and moderate or identify moderators for the discussions. Proceedings-in brief of the presentations and discussions at the workshop will be prepared by a designated rapporteur in accordance with institutional guidelines.

Collaborators

Committee

Co-Chair

Co-Chair

Member

Member

Member

Member

Member

Member

Member

Sponsors

23andMe

All of Us Research Program

American Academy of Nursing

American College of Medical Genetics and Genomics

American Medical Association

American Society of Human Genetics

Association for Molecular Pathology

Biogen

Blue Cross Blue Shield Association

College of American Pathologists

Geisinger Health

Genome Medical

Health Resources and Services Administration

Illumina Inc.

Kaiser Permanente

Myriad Genetics

National Cancer Institute

National Human Genome Research Institute

National Institute of Mental Health

National Institute of Nursing Research

National Institute on Aging

National Society of Genetic Counselors, Inc

Regeneron Pharmaceuticals

The Jackson Laboratory (JAX)

University of California, San Francisco

University of Vermont Health Network Medical Group

Staff

Sarah Beachy

Lead

SBeachy@nas.edu

Kathryn Asalone

KAsalone@nas.edu

Michelle Drewry

MDrewry@nas.edu

Ashley Pitt

APitt@nas.edu

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