What Black Women Know and Want to Know About Counseling and Testing for BRCA1/2

Abstract

Black women are just as likely to have hereditary breast cancer mutations as White women, yet their participation in genetic counseling and testing is substantially lower. This study sought to describe Black women’s awareness and perceptions of BRCA1/2 testing and to identify barriers and motivators to seeking BRCA1/2 services. Fifty intercept interviews were conducted with Black women in public places (a professional women’s basketball game, a grocery store, a faith-based community event, and the waiting area at a breast care clinic) in Washington, DC. More than half of the women (54%) were aware that genetic tests to determine risk for certain breast and ovarian cancers exist, but the majority (88%) had never heard of BRCA1/2 , specifically. After hearing a description of BRCA1/2 genetic markers, 82% stated that they would agree to BRCA1/2 testing if it was offered to them. Perceived advantages of testing included cancer prevention and the ability to share information with family members. Perceived disadvantages included emotional distress associated with identification of the mutation and the potential misuse of results to deny healthcare or employment. Physician recommendation, self-care, and known family history were among the motivators for testing. Women listed possible media and venues for intervention. In spite of low rates of BRCA1/2 testing in the Black community, women in this sample were open to the idea. Interventions that address barriers and include cultural tailoring are necessary.

Awareness, knowledge, perceptions, and attitudes towards genetic testing for cancer risk among ethnic minority groups: a systematic review

“…The lack of understanding about hereditary cancer and unfamiliarity with genetic testing could act as a barrier to testing. Participants across several studies expressed a need for interventions, campaigns, and the provision of information to increase awareness and knowledge of cancer and genetic testing [35, 52, 60, 61, 65].

“Nobody knows it [genetic testing].

…”

“…Across all the included ethnic groups participants associated emotions such as worry, anxiety, and fear with cancer and genetic testing [35, 52, 60, 61, 63–67]. Participants expressed that fear of cancer and knowing their cancer risk was a deterrent to genetic testing [35, 52, 60, 61, 63, 65–67].…”

“…Across all the included ethnic groups participants associated emotions such as worry, anxiety, and fear with cancer and genetic testing [35, 52, 60, 61, 63–67]. Participants expressed that fear of cancer and knowing their cancer risk was a deterrent to genetic testing [35, 52, 60, 61, 63, 65–67]. Participants anticipated experiencing anxiety whilst undergoing genetic counselling/testing [52, 64] and worried about the potential emotional impact that a positive test result would have on them [52, 67].…”

“…Five of the eight qualitative studies conducted in the US reported that participants, particularly African Americans, discussed mistrust and disillusionment in the health care system [35, 52, 61, 63, 65]. Participants expressed concerns that their genetic data would be misused [63], that they would be experimented on [52], and that tests were offered to make money rather than out of necessity [52, 61].…”

“…Participants expressed concerns that their genetic data would be misused [63], that they would be experimented on [52], and that tests were offered to make money rather than out of necessity [52, 61]. Medical mistrust among some African Americans was reported to stem from negative events in history [52] and the “Tuskegee effect” relating to the mistreatment of African American men in the Tuskegee Syphilis study [35]. Concerns regarding confidentiality, what would happen with genetic test results after testing, and concerns about private information being discovered by others without the donor’s permission were also highlighted as important issues [52, 61, 65].…”