Story of BRENDA educates Black community on genetic testing, breast cancer prevention
When it comes to federally funded research, Black patients continue to participate in clinical trials less frequently than their white counterparts.
Lower participation rates have been reported for Black patients in cancer and cardiovascular clinical trials, for example, with reasons to explain this ranging from clinical trial design to complex sociocultural factors.
‘A profound distrust’
Just as they are underrepresented in clinical trials, fewer Black individuals participate in genetic counseling and gene testing than white individuals.
Genetic counseling and gene testing have the potential to improve health outcomes through early detection of genetic variants, enabling subsequent prevention measures, which have been well-documented in breast cancer and Lynch syndrome.
The benefits of genetic testing and research continue to expand across the cancer arena. As this much-needed work continues, there is an increasing awareness that many racial and ethnic groups have limited access to genetic counseling and testing services.
The reason is the same in both cases — a profound distrust of the medical community.
This lack of trust is a major barrier to increasing Black participation rates in clinical trials and genetic services. The main drivers of this distrust have been well-documented. Among them are the now-infamous Tuskegee Syphilis Study, in which scientists observed the effects of untreated syphilis in young Black men, and the story of Henrietta Lacks, whose cancer samples were used for research without her knowledge.
Bridging the divide
There is one solution that may bridge this divide and help build much-needed trust. Interactions and education on a personal basis between clinicians and minority populations may lead to positive results and to subsequent cancer preventive measures using genetic counseling and gene testing.
Our community education and health outreach team created a breast cancer program tailored for the Black population in Delaware, which ranks among the states with the highest percentage of triple-negative breast cancer, especially among Black patients. Non-Hispanic Black patients have higher breast cancer mortality in Delaware than non-Hispanic white patients, and younger non-Hispanic Black patients have significantly higher age-adjusted mortality than non-Hispanic white patients.
One of the goals of our breast cancer research program is to provide an infrastructure that promotes a bench-to-bedside and bedside-to-community continuum for tissue and blood repository, a breast cancer database and, importantly, a community research advisory board. This board has been instrumental in helping to decrease distrust toward the medical community when it comes to genetic counseling and gene testing in the Black population.
That brings me to “The Story of BRENDA,” our community-based project to address health disparities in the Black community. This program started when a young Black woman was diagnosed with triple-negative breast cancer, shocking the local community.
BRENDA — an acronym that stands for breastfeed, reduce consumption of alcoholic beverages and sugary drinks, exercise 150 minutes per week, nutritious foods, do not smoke and achieve a healthy body weight — is designed to educate that community about measures to lower their risk for developing breast cancer.
The key structure of The Story of BRENDA is a presentation delivered by members of the community with three objectives:
- educate the Black community about triple-negative breast cancer and genetic testing;
- provide information about breast cancer prevention; and
- stress the need for participation of Black individuals in cancer research.
Post-presentation surveys of participants measure the impact on genetic testing referrals and knowledge about genetic testing, triple-negative breast cancer and breast cancer prevention.
Questions addressed in the program include: What is triple-negative breast cancer? If it’s genetic, is my family at risk? How does triple-negative breast cancer happen? And, does anything protect women from developing triple-negative breast cancer?
Progress has been slow, especially due to the COVID-19 pandemic. To date, there have been 954 participants in the education program; 24 have scheduled genetic consultations.
In light of the history of medical and research abuse of Black patients, we know this will be a long-term program.
Repetition has always been key to educational success. With the help of BRENDA, we hope our community research advisory board and cancer outreach program will continue to educate and work with the Black population to end this disparity. We really have no other choice.
For more information:
Nicholas J. Petrelli, MD, FACS, can be reached at firstname.lastname@example.org.