About the Alliance for Genomic Justice

The Needs

Communities of color are not typically informed about the reasons for, benefits of, or how to access genetic testing & counseling (1)
Insufficient diversity in the genomics workforce leaves marginalized communities lacking trusted healthcare providers (2)
Patients of color are underrepresented in clinical trials in spite of willingness to participate (3)
The lack of genomic research in minoritized communities limits scientific understanding of genetic conditions (4)
These and other inequities reduce access to genomic healthcare in underserved communities (5)

Our Approach

Educational & Career Support to

Diversify the Workforce

Outreach to Minority Serving Institutions
Admissions & application guidance
Mentoring & affinity groups
Other professional development

Community Education Regarding:

Health & family history indications
Prevalent conditions in communities of color
Genetic counseling & testing
Advocacy & support resources
Clinical trial opportunities

Our Guiding Principles

Individual relationships strengthen community
Empowering the most marginalized uplifts us all
Mission-driven organizational systems & alliances
Collective care
Learning across our differences
Trust through authenticity & transparency
Progress over perfection

References

1. Pasca, C., Carroll, R., Cragun, R. T., & Cragun, D. L. Knowledge and perceptions of the genetic counseling profession among a national cross-sectional sample of U.S. adults. Journal of Genetic Counseling 31, 206–217 (2022). https://doi.org/10.1002/jgc4.1473

2. Jetty, A., Jabbarpour, Y., Pollack, J. et al. Patient-Physician Racial Concordance Associated with Improved Healthcare Use and Lower Healthcare Expenditures in Minority Populations. J. Racial and Ethnic Health Disparities 9, 68–81 (2022). https://doi.org/10.1007/s40615-020-00930-4

3. Unger, Joseph M., Hershman, Dawn L., Till, Cathee, Minasian, Lori M., Osarogiagbon, Raymond U., Fleury, Mark E., Vaidya, Riha. “When Offered to Participate”: A Systematic Review and Meta-Analysis of Patient Agreement to Participate in Cancer Clinical Trials, JNCI: Journal of the National Cancer Institute 113.3, 244–257 (March 2021), https://doi.org/10.1093/jnci/djaa155

4. Schmit, Stephanie L., Purrington, Kristen, Figueiredo, Jane C. Efforts to Grow Genomic Research in Ancestrally Diverse and Admixed Populations. Cancer Research 83.15, 2443-2444 (2023). https://doi.org/10.1158/0008-5472.CAN-23-1050

5. Madden, E.B., Hindorff, L.A., Bonham, V.L. et al. Advancing genomics to improve health equity. Nat Genet 56, 752–757 (2024). https://doi.org/10.1038/s41588-024-01711-z

About the Alliance for Genomic Justice

The Needs

Our Approach

Our Guiding Principles

References

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