Black Women's Confidence in the Genetic Information Nondiscrimination Act.

Black women at-risk for hereditary breast and ovarian cancer (HBOC) continue to underutilize genetic counseling and testing (GCT). One reason for this disparity is a fear of discrimination from insurance companies if identified as high-risk. The Genetic Information Nondiscrimination Act (GINA) was enacted to protect against this type of discrimination; however, Black women's levels of confidence in this law are unknown. In this descriptive study, we sought to (1) assess Black women's confidence in the GINA law and (2) identify multilevel factors related to their confidence in GINA. Ninety-four Black women at-risk of HBOC completed surveys that assessed intrapersonal, interpersonal, and structural factors. Multiple regression analysis determined factors associated with confidence in GINA. Most women were ≤50 years of age (66.0%) and about half never had a cancer diagnosis (51.1%). Confidence in GINA was moderate (mean = 10.67; standard deviation = 2.54; range = 5-15). Women who valued GCT reported more confidence in GINA (ß = 0.345; CI 0.017 to 0.673; p = 0.040). Lack of confidence in GINA may serve as a barrier to seeking GCT. Efforts to increase the perceived value of GCT among Black women could be benefited by increasing awareness of national efforts towards privacy protections of genetic information.

Understanding Medical Mistrust in Black Women at Risk of BRCA 1/2 Mutations.

The benefits of genetic counseling and testing for hereditary breast and/or ovarian cancer (HBOC) are well documented; however, Black women are less likely to use these services compared to White women. Mistrust of the medical system has been associated with Black women's use of genetic counseling and testing (GCT). However, relatively little is known about the correlates of medical mistrust in Black women at increased risk of HBOC. In this study, we examined the prevalence and predictors of medical mistrust in 94 Black women at-risk of HBOC. Most women were married (48.7%) and had at least some collegiate education (57.1%). While no predisposing characteristics were significantly related to medical mistrust, bivariate analysis indicated significant relationships between mistrust and fatalism (p=0.04), perceptions of discrimination in the healthcare setting (p=0.01), and self-efficacy in obtaining GCT (p=0.01). Multivariable analysis revealed that women who reported more discriminatory experiences and women with less confidence in obtaining GCT expressed greater medical mistrust. Multilevel approaches are needed to address psychosocial factors associated with feelings of mistrust. Future efforts must not solely focus on educating women on the importance of and need for GCT; addressing structural barriers, such as patient-provider interactions, that contribute to mistrust must become a priority.