Matthew Knowles, the father of the artists Beyonc and Solange, recently announced that he had been told that he has a breast cancer caused by a BRCA2 gene mutation and that his children have a 50 percent chance of inheriting it.

In 2007, my mother was in a similar position. She learned after receiving a breast cancer diagnosis at age 42 for a second time her first bout with cancer came when she was 28 that she carried a BRCA2 mutation. It meant that as her daughter, I had even odds of having inherited it from her.

BRCA1 and -2 gene mutations can elevate a carriers lifetime risk of developing breast cancer up to 72 percent, compared to a 12 percent lifetime risk among the general population. They can also elevate a carriers lifetime risk of ovarian, pancreatic or prostate cancers along with melanoma. Although he had a family history of breast cancer, Mr. Knowles had never been referred for genetic counseling or testing to evaluate his risk of having a BRCA mutation.

His story is all too common among African-Americans. Black women are substantially less likely to undergo genetic counseling and testing for BRCA mutations as compared to white women, even though research suggests that the rate of BRCA mutations is higher among black women than it is for white.

Researchers at the Moffitt Cancer Center in Florida found that among young breast cancer patients who met the national guidelines for receiving genetic counseling, only 37 percent of black women had discussed it with a provider compared to 86 percent of white women. Just 36 percent of black women received testing for BRCA compared to 65 percent of white women. A study showed that only 58 percent of black women who were eligible for genetic testing under the national guidelines received testing as a part of their routine care.

Although there is no clear answer as to why the disparity exists, one reason may be the lack of awareness among doctors that black people are at risk for carrying BRCA mutations. Ohio State University researchers interviewed black and white women at higher risk for breast cancer. One study participant, a black woman in her 20s, reported that when she had expressed interest in genetic counseling, her gynecologist told her that only Jewish women tested positive for BRCA mutations.

Although its true that Ashkenazi Jews have an especially high risk of carrying a mutation (the rate is estimated to be one in 40), people of all racial backgrounds run a risk. The same study also found that black women are less likely have seen a specialist who could provide information on genetic counseling and testing: only 15 percent of black women in the study had met with a genetics, cancer or breast specialist as against 70 percent of white participants.

Although there have not been any published studies that I know of on genetic counseling and testing rates among black men, a 2016 report found that among men diagnosed with prostate cancer, black men may be more likely to have BRCA1 and BRCA2 mutations than white men.

The discovery of the BRCA1 and -2 mutations in 1994 and 1995 was a huge breakthrough that allowed for us to get better at treating and preventing cancer. That makes the low levels of BRCA testing among African-Americans especially troubling, because people who know they are carriers can possibly reduce the risk of getting cancer by getting a preventive mastectomy or oophorectomy.

I know this myself. When I was 29, I was tested and discovered that my mother had passed on her BRCA2 mutation to me. I decided to have a preventive double mastectomy, which shrank my risk of developing breast cancer from 80 percent to less than 5 percent.

Even if a person decides not to do what I did, enhanced surveillance, like an MRI and mammogram every six months, can help detect cancer at an early stage when its more treatable. If black women and men arent receiving genetic testing, theyre potentially missing out on the chance to catch breast cancer early on. This is crucial because black women are more likely than white women get diagnoses of breast cancer at a later stage, which has lower survival rates. Similarly, black men are also more likely than white men to be told they have prostate cancer when it has reached a more advanced stage.

As the use of personalized medicine and genomics in treating cancer increases, knowing whether a patient has a BRCA mutation allows for individualized treatment. It also lets the patient to take steps to prevent a recurrence or a second cancer elsewhere. For example, once my mother learned that she carried a BRCA2 mutation, which is also associated with a higher risk of ovarian cancer, she underwent an oophorectomy. She has been cancer-free for 12 years.

Knowing that a person carries a BRCA mutation also provides an opportunity to test and identify relatives who may carry a harmful mutation potentially preventing and detecting cancer early in a whole family.

We need a large-scale effort to improve genetic counseling and increase testing rates in the black community. The first step is to make medical providers more aware that black women and men are at risk for carrying BRCA mutations. Numerous studies have shown that the biggest indicator of whether someone undergoes genetic testing is a recommendation from a doctor.

An educational effort would also help to dispel myths that genetic testing is financially prohibitive. Most insurance will cover the costs of testing for people who meet the national guidelines. When I underwent testing in 2014, I paid only $80 after insurance kicked in.

Cancer awareness organizations also need to do a better job of reaching out to the black community about BRCA mutations and the benefits of genetic counseling and testing. Research shows that black women are highly interested in undergoing testing for BRCA mutations once they are presented with information regarding its benefits.

Only one percent of genetic counselors in the United States are black. We need more black health care professionals who have undergone specialized training to provide risk assessment and interpret genetic testing results. This could also help to increase the number of black women who receive genetic testing.

I cannot imagine what it must have been like for my mother to have faced her first cancer diagnosis when she was not even 30 and had a young daughter. What I do know is that I was able to substantially lower my chance of having to battle the same disease because I knew about her BRCA2 mutation. More black families should be empowered with the same information.

Erika Stallings (@quidditch424) is a lawyer.

Follow this link:
Beyoncs Dad Has a Mutation More African-Americans Should Be Tested For - The New York Times

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