Racism, Mistrust in Medical System May Affect Black Women’s Use of Genetic Testing for Breast and Ovarian Cancers

By Rachel Walden |

Black women in the United States face many health disparities. The CDC recently provided data showing the average life expectancy for black women (at birth in 2010) is 78 — 3.3 years shorter than that for white women.

One of the many diseases for which there are unequal outcomes is breast cancer. Black women are less likely than white women to develop breast cancer, but are much more likely to die of the disease. One hypothesis to explain at least some of the disparity is that black women may be more likely to carry forms of the BRCA1/2 genes that increase their risk for breast and ovarian cancer.

Genetics alone, though, is probably not enough to explain the difference. A recently published study looks at how racism and mistrust in the medical system may also affect black women’s use of genetic testing to inform the monitoring and care they receive.

The authors studied 100 black women at high risk for breast cancer. They looked at whether the women knew how to get, pay for, and what to do with the results of BRCA gene testing, their knowledge of a U.S. law forbidding discrimination based on genetic findings, and their level of mistrust in the medical system, alongside whether the women knew about or had received genetic counseling and testing.

While it’s a small study, the researchers found that the more women knew about how to get and pay for the tests, and the more trust they had in the medical system, the more likely they were to have had BRCA testing.

It should come as no surprise that the more mistrust the women had in the medical system, the less likely they were to undergo genetic testing and counseling. In fact, some of the researchers on this study are affiliated with Johns Hopkins, which back in the 1950s oversaw the (now) widely publicized experiments using the cells of Henrietta Lacks for research.

There’s a long history of abuse — and resulting mistrust — between the medical and scientific establishment and the black community in the United States. Books such as “Bad Blood: The Tuskegee Syphilis Experiment” and “Killing the Black Body” review this history and are crucial to understanding how past injustices may contribute to ongoing disparities.

The study authors acknowledge this likelihood, and comment on how the era of “personalized medicine” may not benefit all patients equally due to this history of racism:

If minority communities have distrust of the medical system and have not benefited from traditional technologies, it is possible that disparities will persist or even widen in the pharmacogenomics era.

Despite being considered high risk, fewer than 1/3 of the women in the study had ever been referred for BRCA genetic testing by their healthcare provider.

Although the researchers didn’t measure it, the women in the study may have been more likely than many black women to have been referred for BRCA testing in general, as they were largely college-educated women and almost all of them had health insurance.

“Black women who are uninsured or those who have lower levels of education may have less genetic testing and counseling awareness and engagement than we found in our sample,” the study’s authors wrote.

The authors also note that women who are underinsured or uninsured may have trouble accessing these tests, which are expensive. Our Bodies Ourselves was a co-plaintiff in the recent lawsuit against Myriad Genetics, opposing the patenting of BRCA1/2 genes. We hope that the recent Supreme Court decision on those patents will lead to more available, affordable gene testing options for all women.

As an action item for potentially reducing disparities, the authors urge physicians and genetic counselors to “improve medical care by ensuring that risk assessment and risk reduction strategies include a clear presentation of the benefits, not just the risks of testing, and by addressing patient trust and concerns about the medical system.”

Read the full study, “Medical Mistrust and Self-efficacy Influence Black Women’s Level of Engagement in BRCA1/2 Genetic Counseling and Testing,” which is available online for free.

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