Skip to main content

How Cutting-Edge Medical Care Becomes Optional for African Americans

A new study looks at racial disparities in genetic testing for cancer patients.

When a woman under age 45 is diagnosed with breast cancer, national guidelines recommend that she undergo genetic testing for cancer-predisposing mutations. With the test results, a younger breast cancer patient is better equipped to answer some of the difficult questions she confronts after a diagnosis. Should she undergo major, disfiguring surgery—a double mastectomy—to lower her risk of developing another cancer? Are her family members also at risk for cancer, and should they be screened more often?

Thanks to the national guidelines, more and more breast cancer patients now take genetic tests—but only if they're white. According to a study published last year—which looked at genetic testing among 3,000 breast cancer patients in Pennsylvania and Florida—black patients were less than half as likely as white patients to undergo genetic testing. Why?

The researchers looked at several factors that might explain this racial difference, such as whether there were differences in tumor characteristics between black patients and white patients, or differences in a family history of breast cancer—both factors that a doctor must consider before deciding whether a genetic test will likely benefit a particular patient. Also, because black patients and white patients tended to see different oncologists, the researchers also tried to figure out whether differences in the doctors' age, training, or attitude toward genetic testing were important.

While all of these factors seemed to play some role in the rates of genetic testing among black and white patients, the most important factor, by far, turned out to be something more disturbing: the doctors' behavior. Oncologists were significantly less likely to recommend genetic testing to black patients, even after the researchers took into account any differences in the doctors’ age and training, and in the women’s diagnoses. As the researchers put it: "Our study demonstrates that the disparity in testing is not explained by differences in the doctors that black and white women see for their cancer treatment. Rather, it is driven, in part, by differences in the recommendations that are given to black women versus those given to white women."

Last month, these researchers expanded on this finding with a new study that more closely examined why black breast cancer patients failed to undergo genetic testing. They found that patients who didn't get tested were both concerned about the cost of the test and uncertain about its benefits. Essentially, these patients' doctors failed to clearly communicate the importance of a moderately expensive and relatively new medical test—and thus left their patients with the impression that a crucial new tool in breast cancer care is merely optional.

Oncologists were significantly less likely to recommend genetic testing to black patients.

This is troubling because, even though the hype surrounding genetic testing often outpaces its medical value, the evidence that genetic testing benefits younger breast cancer patients is growing. Last month, a new study found that roughly 70 percent of women who carry cancer-predisposing mutations in the genes BRCA1 and BRCA2 (the main genes included in genetic tests for breast cancer patients) will develop breast cancer, often in early adulthood. Mutation carriers who did develop breast cancer also had a high-risk additional breast cancer or ovarian cancer (another cancer also linked to BRCA mutations). As expected for people with inherited cancer-predisposing mutations, family members of mutation carriers were also often affected: BRCA mutation carriers were more likely to develop cancer if they had relatives who also had breast cancer.

The good news is that women who carry these mutations, and their relatives, can greatly reduce their risk of cancer with more frequent cancer screenings or, in particularly high-risk patients, through surgery. On the flip side, breast cancer patients who don't have BRCA mutations generally have a low risk of developing a second cancer, and probably shouldn't undergo major surgery to reduce their cancer risk. A genetic test can therefore help breast cancer patients—and their relatives—get the care they need, while avoiding what they don't.

But black women with breast cancer are not getting the care they need. African Americans develop breast cancer less frequently than whites, but are more likely to die from it. They are more likely to develop cancer at an earlier age, and their cancer is often more advanced when it's discovered. While genetic testing won't completely solve these disparities, it almost certainly would narrow them. Yet we have a medical system that, due to high costs and doctors who treat black patients differently, presents important advances in medical care—like genetic tests—as something optional for African Americans.

This problem would only worsen under the health-care plan now being considered in Congress—a plan that would leave people paying more money for less insurance coverage of their medical expenses. This would tip the balance more sharply toward viewing new medical tests, drugs, and procedures as non-essential, with higher out-of-pocket costs leading more patients and their doctors to wrongly conclude that the medical benefits of these less familiar treatments won't outweigh their expense. Such decisions would only further entrench a health-care system that treats cutting-edge medicine as something essential for certain people in our society, but merely optional for others—particularly those of African-American descent.