Completed
Topics
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.
Featured publication
Workshop_in_brief
·2024
Historical unethical practices such as systemic racism and structural discrimination have negatively impacted the trustworthiness of genomics research, particularly with underrepresented populations. Working collaboratively with populations through community engagement can improve the quality of the...
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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
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
Kathryn Asalone
Michelle Drewry
Ashley Pitt