Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

Abstract

Clinical availability of genetic testing for cancer predisposition genes is generating a major challenge for U.S. health care systems to provide relevant genetic services to underserved populations. Here we present rates of study enrollment and utilization of genetic testing in a research study on BRCA1 testing acceptance in one large kindred. We also present data on baseline access to genetic information as well as enabling and obstructing factors to study enrollment. The study population included female and male members of an African-American kindred based in the rural southern United States with an identified BRCA1 mutation. A combination of quantitative and qualitative data were collected and analyzed. Of the 160 living, eligible and locatable kindred members, 105 (66%) enrolled in the study. Family, personal, and educational motivations were the most commonly endorsed reasons for study participation. The most commonly cited reasons for refusal to participate in the study were: lack of interest, time constraints, and negative experiences with prior participation in genetic research. Eighty three percent of the participants underwent BRCA1 testing. In multiple logistic regression analysis, age 40-49 (odds ratio (OR) = 6.9; 95% confidence interval (CI) = 1.2-39.5), increased perceived cancer risk (OR = 4.1; 95% CI = 1.1-14.6), and high cancer genetics knowledge levels (OR = 1.5; 95% CI = 1.1-2.3) were associated with BRCA1 testing acceptance. The results of this study indicate that cognitive and demographic factors may influence genetic research participation and genetic testing decisions among African Americans who are at increased risk of carrying a deleterious BRCA1 mutation.

The Role of Knowledge on Genetic Counseling and Testing in Black Cancer Survivors at Increased Risk of Carrying a BRCA1/2 Mutation

“…Breast cancer genetics knowledge is one modifiable factor that has been associated with genetic counseling/testing use in diverse populations (Butrick et al, 2015), including in at risk Black women (Kinney et al, 2006; Sherman et al, 2013; Thompson et al, 2002). Some research suggests that Black women have lower breast cancer genetics knowledge than Whites (Donovan & Tucker, 2000; Halbert et al, 1997).…”

“…Some research suggests that Black women have lower breast cancer genetics knowledge than Whites (Donovan & Tucker, 2000; Halbert et al, 1997). Previous research examined women not-at risk for HBOC (Donovan & Tucker, 2000; Thompson et al, 2002), only at-risk unaffected women (Halbert et al, 1997), or has grouped both affected and unaffected women (Kinney et al, 2006). Prior research regarding breast cancer genetics knowledge has not targeted at-risk HBOC Black survivors.…”

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

“…Black women’s risk for hereditary breast cancer mutations are also the same as White women [15]; yet, despite various research and recruitment efforts over the past decade, Black women have not readily adopted use of genetic counseling and testing services and have substantially lower enrollment rates (15%) into familial cancer genetics registries than White women (36%) [16–18]. It is unclear whether these disparities are due to personal preferences, social norms, and/or cultural beliefs [17, 19, 20]. Some barriers to genetic counseling and testing include lack of knowledge [21–26], negative attitudes regarding genetics and genetics research [22, 25, 27], and concerns about racial, insurance, and employment discrimination[28, 29].…”

Saudi Women's Interest in Breast Cancer Gene Testing: Possible Influence of Awareness, Perceived Risk and Socio-demographic Factors

“…However, this awareness varies by socio-demographics, family history, access to information through the health care system (Meischke et al, 2001;Benjamin-Garner et al, 2002;Wideroff et al, 2003;Vadaparampil et al, 2006) and the perceived personal risk (Bottorff et al, 2002;Bruno et al, 2004). Also, individual's decision regarding whether or not to seek clinical cancer genetic services may also be influenced by knowledge, cognitions, emotions, family communication, and socio-demographic and clinical characteristics (Bottorff, 2002;Kinney et al 2006;Ropk et al, 2006). To enhance informed decision making about cancer genetic counseling or testing, it has become increasingly important to gain a better understanding of cultural, access, and psychosocial contexts related to factors influencing the use of these health services (Bottorff, 2002;Kenny et al, 2010).…”