Several studies suggest that Black women are less likely to have genetic testing for an abnormal BRCA1 or BRCA2 gene. Researchers haven’t been sure why this is happening -- it doesn’t seem to be based on attitudes about genetic testing, insurance, income levels, or a difference in the risk of having a mutation.
A study suggests that the difference in genetic testing rates in Black and white women isn’t because they tend to see different doctors. Instead, it seems that many oncologists and surgeons are less likely to recommend genetic testing to Black women.
The research was published online on May 9, 2016 by the Journal of Clinical Oncology. Read the abstract of “Health Care Segregation, Physician Recommendation, and Racial Disparities in BRCA1/2 Testing Among Women With Breast Cancer.”
Most inherited cases of breast cancer are associated with a mutation on one of two genes: BRCA1 (BReast CAncer gene one) or BRCA2 (BReast CAncer gene two).
Women with a BRCA1 or BRCA2 genetic mutation:
- have up to a 72% lifetime risk of developing breast cancer
- have a much higher-than-average lifetime risk of ovarian cancer; estimates range from 17% to 44%
U.S. guidelines say that BRCA testing should be considered when:
- three or more women in a family have been diagnosed with breast and/or ovarian cancer, particularly if the women were younger than 50 when diagnosed
- some women in a family have been diagnosed with cancer in both breasts
- there is both breast and ovarian cancer in a family
- men in a family have been diagnosed with breast cancer
- there is breast cancer in a family and either male relatives on the same side of the family have been diagnosed with prostate cancer at a young age or relatives on the same side of the family have been diagnosed with other types of cancer, including melanoma, stomach, uterine, thyroid, colon, and pancreatic
- a family is of Ashkenazi (Eastern European) Jewish descent
In the study, researchers surveyed 3,016 women diagnosed with stage I or stage II breast cancer in Pennsylvania and Florida between 2007 and 2009, as well as their surgeons and oncologists:
- the women were between 18 and 64 years old
- 2,071 women were white and 945 were Black
- 808 medical oncologists were surveyed
- 732 surgeons were surveyed
The women were asked about:
- age at diagnosis
- the characteristics of the breast cancer they were diagnosed with
- family history of cancer
- whether they were of Ashkenazi Jewish heritage
- their attitudes toward BRCA1/BRCA2 testing
- demographic information, such as their age and whether they had health insurance
- whether they had genetic testing
The medical oncologists and surgeons were asked about:
- their adoption of new medical technologies
- whether they thought BRCA1/BRCA2 testing was too expensive or difficult to arrange
The results from the women’s surveys found that:
- on average, Black women were older than white women; 63% of Black women were ages 45-59, while 53% of white women were 49 or younger
- Black women were more likely to be diagnosed with stage II cancer while white women were more likely to be diagnosed with stage I
- Black women were more likely to have had a first-degree relative (mother, sister, daughter) diagnosed with breast or ovarian cancer compared to white women
- Black women were less likely to have a BRCA1 or BRCA2 mutation compared to white women; 30% of Black women were considered at high risk for a mutation while 52% of white women were considered high risk
- Black women were slightly less positive about BRCA1/BRCA2 testing
- about 30% of both Black and white women felt that BRCA1/BRCA2 testing was too expensive for them to afford
- Black women were less likely than white women to have their surgeon or oncologist recommend genetic testing
- 26.7% of Black women had genetic testing and 47.5% of white women had genetic testing
- among women who had genetic testing, Black women were less likely to be categorized as high risk than white women
The results from the survey of the oncologists and surgeons found that:
- doctors who treated white women had practices that treated mainly white women and doctors who treated Black women had practices that treated mainly Black women; the researchers said the care of Black and white women was “highly segregated”
- all the doctors had about the same attitudes toward genetic testing and adopting new medical technologies; in other words, there were no differences in these areas between doctors who took care of more Black women and doctors who took care of more white women
- doctors who cared for mainly Black women were younger and more likely to be female compared to doctors who cared for mainly white women
"…More than 15 years after BRCA1/2 testing became available, racial disparities in BRCA1/2 testing among women with breast cancer remain large, with Black women nearly half as likely as white women to undergo testing," the researchers wrote. "As seen in an earlier study of a primary care population, this disparity is only partially explained by differences in the risk of carrying a mutation, tumor characteristics, and sociodemographic characteristics, or attitudes about testing. 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 versus those given to white women, with both oncologists and surgeons being less likely to recommend BRCA1/2 testing to Black women than they are to white women even after adjusting for the predicted risk of a mutation."
The results of this study are troubling and suggest that many women who should have genetic testing aren’t being recommended for it by their doctors.
If you’ve been diagnosed with breast cancer, you and your doctors will put together a treatment plan that meets the needs of your unique situation and takes into account your overall medical condition and your personal style of making decisions. Your treatment plan may or may not include genetic testing.
Still, if three or more women in your family have been diagnosed with breast or ovarian cancer, especially if they were diagnosed younger than 50, you may want to consider genetic testing. If you doctor doesn’t recommend it, it’s a good idea to ask why.
If you’re not comfortable with the treatment plan and genetic testing options your doctor recommends or want to see if another doctor recommends the same options, you may want to consider getting a second opinion from another doctor.
Many women diagnosed with breast cancer feel a sense of urgency about jumping right in and starting treatment immediately. In most cases, though, there’s time to do some research to make sure your diagnosis is correct and your treatment plan makes sense -- and this may include getting a second opinion.
Getting a second opinion means asking another breast cancer specialist, or a team of specialists, to review all of your medical reports and test results, give an opinion about your diagnosis, and suggest treatment options. A second opinion may confirm your original doctor’s diagnosis and treatment plan, provide more details about the type and stage of breast cancer, raise additional treatment options you hadn’t considered, or recommend a different course of action. Even if you’ve already had treatment, it’s not too late to get a second opinion. A second doctor can weigh in on your diagnosis and treatment plan to date, offering any additional thoughts or recommendations.
No matter your age or ethnicity, you absolutely deserve the best medical care possible. Don’t be afraid to ask questions and be a strong advocate for your care.
For more information, visit the Breastcancer.org Getting a Second Opinion pages.
Editor’s Note: This article was updated on Dec. 20, 2018, with updated information on cancer risks associated with BRCA mutations.
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