Advancing Equity in Hereditary Cancer Genetics: Addressing Disparities in African American Communities

Michelle Springer, MS, CGC - Chair, CGA-IGC Communication Committee

During Black History Month, we take time to celebrate the strength, achievements, and lasting impact of Black communities. It’s also an opportunity to address the inequities that continue to influence health outcomes today.

The article “Genetic Evaluation for Hereditary Cancer Syndromes Among African Americans: A Critical Review” takes a closer look at one of those gaps: unequal access to genetic testing and counseling for hereditary cancer risk in African American communities.

Genetic testing has transformed the way we approach cancer prevention, early detection, and personalized treatment. But these advances haven’t benefited everyone equally. Much of the research on hereditary cancer genetics has focused on individuals of European ancestry. As a result, genetic tests may be less accurate or harder to interpret for African American patients. Because African Americans are underrepresented in national genetic databases, they are more likely to receive results showing variants of uncertain significance (VUS), findings that can complicate result interpretation and clinical decision-making.

The review also highlights troubling referral patterns. African American individuals diagnosed with breast, colorectal, or prostate cancer are less likely to be referred for genetic evaluation, even when they meet established guidelines. They are also less likely to complete testing or receive appropriate follow-up care. At the same time, African American patients are often diagnosed with more aggressive forms of these cancers and may carry pathogenic variants linked to hereditary cancer risk.

The reasons for these disparities are complex. Limited access to genetics providers, cost and insurance concerns (despite widely-available laboratory financial assistance programs), provider bias, and longstanding medical mistrust rooted in historical injustices all play a role. Importantly, the authors challenge a common misconception: many African American patients are interested in genetic testing. Lower testing rates are not simply due to a lack of interest.

Although medical mistrust remains, the authors emphasize that providers should ensure proper referral of all eligible patients for genetic evaluation, regardless of race or perceived ability to pay and make full use of low- or no-cost testing options. They also call for a closer examination of potential bias within existing clinical guidelines, greater diversity in genetic research, and the inclusion of health equity experts in decision-making processes.

Moving forward, meaningful change will require clear and culturally sensitive communication, thoughtful use of medical terminology, strong partnerships with community organizations, and better provider education. Expanding telehealth services may also help bridge access gaps. Together, these steps can help build trust, raise awareness, and ensure that advances in genomic medicine benefit all individuals equally.

Read the full article HERE!

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