Psychosocial approaches to participation in BRCA1/2 genetic risk assessment among African American women: a systematic review

Abstract

Breast cancer is a significant health concern for African American women. Nonetheless, uptake of genetic risk assessment (including both genetic counseling and testing) for breast cancer gene mutations among these populations remains low. This paper systematically reviews cognitive (i.e., beliefs) and affective (i.e., emotions) factors influencing BRCA1/2 genetic risk assessment among African American women as well as psychosocial interventions to facilitate informed decision making in this population. A systematic search of CINAHL, PubMed, and PsycINFO was undertaken, yielding 112 published studies. Of these, 18 met the eligibility criteria. African American woman are likely to participate in genetic risk assessment if they are knowledgeable about cancer genetics, perceive a high risk of developing breast cancer, have low expectancies of stigmatization from medical professionals, view themselves as independent from family, and have fatalistic beliefs and a future temporal orientation. Anticipated negative affective responses, such as an inability to “handle” the results of testing, are barriers to uptake. Specific perceptions, beliefs, and emotional factors are associated with genetic risk assessment among African American women. Understanding these factors is key in the development of interventions to facilitate informed decision making in this population.

African American Women's Limited Knowledge and Experiences with Genetic Counseling for Hereditary Breast Cancer

“…Thus, other efforts are needed to test potential explanations of GC/T underuse in African American women and new interventions that tackle aspects that have been understudied such as emotional management (Sherman et al, 2013). A deeper understanding of the role of different anticipated emotions in women’s decisions to undergo GC/T warrants further attention.…”

“…However, the use of GC/T varies widely, with minority women having lower rates of use than White women (Hall & Olopade, 2005; Sherman, Miller, Shaw, Cavanagh & Gorin, 2013). Approximately 5% to 10% of hereditary breast cancers in the United States are thought to be due to germline mutations, with BRCA1/2 accounting for a significant proportion (John et al 2007; Malone et al 2006; McClain, Palomaki, Nathanson, & Haddow, 2005).…”

“…Explanations for the lower use of genetic counseling and testing in African American women include: limited knowledge, lower perception of breast cancer risk, perceived barriers to GC/T, anticipated negative emotional reactions and stigma concerns (Kinney et al 2006; Simon & Petrucelli, 2009; Thompson et al, 2002), concerns related to cost (Pal et al 2008), fear of discrimination (Simon & Petrucelli, 2009), distrust of the medical community, and concerns about exploitation due to carrier status. Further, some researchers suggest the low rate of GC/T seen in African Americans may be related to cultural beliefs and values, including fatalism, temporal orientation, and religious and spiritual faith (Meiser et al 2001; Hughes, Fasaye, LaSalle, & Finch, 2003; Sherman et al, 2013). Greater use of spiritual coping has been associated with a perception of lower breast cancer risk (Ma et al, 2008).…”

Toward Genetics-Driven Early Intervention in Dilated Cardiomyopathy

“…For example, studies have found that uptake of BRCA1/2 tests to identify inherited risk for breast/ovarian cancer was lower among AA compared to EA. 33,34 At present, methods for addressing these implementation challenges in DCM have not been studied.…”

All in the family? Communication of cancer survivors with their families

“…Best practices for communication of genetic test results may also depend on cultural or social context. For example, studies have found that uptake of BRCA1/2 tests to identify inherited risk for breast/ovarian cancer was lower among AA compared to EA (19,20). At present, the process of communicating genetic risk from probands to family members, its dynamics, and differences across cultures have not been studied.…”