African American Women Less Likely to Have Genetic Counseling for BRCA1 and BRCA2 Testing

Reviewed study: "African American Women Less Likely to Have Genetic Counseling for BRCA1 and BRCA2 Testing" by K. Armstrong et al., Journal of the American Medical Association, April 13, 2005

Is this for me? If you're an African American woman with a family history of breast or ovarian cancer, you might want to read this article.

Background and importance of the study: Testing for abnormal breast cancer genes started in 1996, but little research has been done on who gets tested and why. And those studies have included mostly white women. Researchers aren't sure if this is because white women are more likely to have hereditary breast cancer or are more likely to seek genetic testing, or because there is racial disparity in how the tests are used. Racial disparity means that people are more (or less) likely to be given particular treatments because of their race.

Racial disparities in other areas of health care have been documented in the past. Because these inequalities may be greatest for new technologies, the researchers thought that genetic counseling for BRCA1 and BRCA2 testing might be affected.

Abnormal BRCA1 and BRCA2 (BR stands for BReast, and CA stands for CAncer) genes account for about 5–10% of all breast cancers. The average woman (without an inherited abnormal breast cancer gene) in the United States has about a 12% risk of developing breast cancer over a 90-year life span. Women who have an abnormal BRCA1 or BRCA2 gene have up to an 85% risk of developing breast cancer by age 70. Women with BRCA1 or BRCA2 abnormalities are also at increased risk of developing ovarian cancer. The lifetime risk for ovarian cancer is about 55% for women with BRCA1 mutations and about 25% for women with BRCA2 mutations. By comparison, about 1.8% of women without an inherited BRCA gene abnormality get ovarian cancer.

In the study reviewed here, researchers from the University of Pennsylvania looked at race and the use of counseling for BRCA1 and BRCA2 testing among women with a family history of breast or ovarian cancer. They also wanted to see if factors such as age, education, and income, as well as worry about and perceptions of breast cancer, influenced whether women of different races had counseling for BRCA1 and BRCA2 testing.

The researchers looked at genetic counseling rather than genetic testing because they were interested in who gets referred for testing, not who decides to have testing after they've been counseled. In this study, about three quarters of the women who received genetic counseling did later have testing for BRCA1/2 abnormalities.

Study design: The researchers looked at 1,062 women who had a family history of breast or ovarian cancer. The women were all patients at the University of Pennsylvania Health System from 1996 to 2003.

The researchers mailed all the women in the study a survey that was filled out at home and mailed back. The women were asked to report their:

• age,
• education,
• annual household income,
• race/ethnicity,
• religious heritage,
• family and personal history of breast and ovarian cancer,
• Ashkenazi Jewish heritage,
• perception of breast cancer risk,
• perception of ovarian cancer risk,
• level of worry about developing breast and/or ovarian cancer,
• attitudes about genetic testing,
• visits to their gynecologist and primary care doctor in the past year, and
• any discussion of BRCA1 and 2 testing during doctor visits.

The researchers wanted to see which women considered at high risk for breast or ovarian cancer received BRCA1 and BRCA2 test counseling. (Women who had already been diagnosed with breast or ovarian cancer were not included in the study.)

Information from 408 women was analyzed, of whom 217 had had genetic counseling for the BRCA1 and BRCA2 test. Because more than 90% of these women were either African American or white, the researchers decided to compare those two groups and exclude women from other racial or ethnic groups.

Results: The researchers found that African American women with a family history of breast or ovarian cancer were significantly less likely to have genetic counseling for BRCA1 and BRCA2 testing than white women with similar family histories:

• Of the 217 women who had genetic counseling, 7.4% were African American and 85% were white.
• Of the 191 women who did not have genetic counseling, 29% were African American and 66% were white.

The researchers also found that women who had genetic counseling were more likely to:

• have an increased probability of a BRCA1 or BRCA2 abnormality,
• be Jewish,
• be married,
• be younger,
• have completed college or graduate school,
• have a household income of $70,000 or higher,
• have seen a gynecologist more than twice in the past year,
• have discussed BRCA1 and BRCA2 testing with their gynecologist or primary care doctor,
• be significantly more worried about developing breast or ovarian cancer,
• perceive their risk of breast or ovarian cancer as higher, and
• believe in the benefits of genetic testing.

The association between African American women and lack of counseling for BRCA1 and BRCA2 testing didn't change when the researchers considered the other factors listed above. In other words, even if an African American woman was significantly worried about breast cancer, perceived her risk as high, had a college education, a $70,000 annual salary, and had discussed BRCA testing with her doctor—all things that are associated with getting counseling—she still was less likely than a comparable white woman to have counseling for genetic testing.

Conclusions: The researchers concluded that there was a big difference in the likelihood of white women and African American women receiving BRCA1 and BRCA2 counseling. White women were five times more likely than African American women to undergo genetic counseling for BRCA1 and BRCA2 testing. This finding can't be explained by differences in:

• social or economic factors such as income and education levels
• risk for having a BRCA1 or BRCA2 abnormality
• perception of or worry about cancer risk
• attitudes toward genetic testing, or
• discussions with primary care doctor about testing.

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