Sharing of Genetic Test Results Among African American Breast Cancer Survivors: Does it Happen — Why or Why Not?

Authors: Kasting ML, Reblin M, Cragun D, Augusto B, Garcia J, Pal T, Vadaparampil ST

Category: Cancer Health Disparities, Behavioral Science & Health Communication
Conference Year: 2018

Abstract Body:
Purpose: Research shows sharing results of genetic testing (GT) for hereditary breast cancer (BC) with family members can inform relatives of cancer risk and increase perceived control and social influence for the survivor but this has not been studied in the Black population. Methods: Black women with invasive BC at age ‰¤50 years were recruited to investigate etiology and outcomes of early-onset invasive BC (n=456) and were offered GT; a subset of Black women completed questionnaires assessing sociodemographic, clinical, and communication variables (n=354). We assessed whether participants shared their GT results with their providers and family members (female first-degree relatives [FDR], and male FDRs) within a year of receiving GT results, stratified by BRCA status (positive [+], negative [-], variant of uncertain significance [VUS]). Results: Mean age was 45 and 48% had private insurance. A higher proportion of BRCA+ participants reported having a primary care provider (PCP; 73%) than BRCA- (46%) or VUS (48%) but the difference was not significant (p=0.07). Of those who did have a PCP, BRCA+ participants were significantly more likely to report they shared their results with their PCP (94%) than either BRCA- (63%) or VUS (74%; p=0.05). There were no differences between groups on whether the participant had an oncologist (p=0.10). Of those who had an oncologist, BRCA+ shared their results 100% of the time, although this was not significantly different from either BRCA- (75%) or VUS (70%; p=0.07). The majority of participants shared their results with at least 1 female FDR and did not share with any male FDR; these results did not differ by BRCA status. However, women who were BRCA+ reported significantly lower rates of sharing their results with daughters (25%) than BRCA- (57%) or VUS (68%) (p=0.02). Conclusions: A substantial number of these Black BC survivors did not have a PCP, but of those who did, a majority shared their GT results with them. Women typically shared their results female but not male FDRs. This could be because participants aren’t aware that male family members can be BRCA carriers. This study fills a notable gap in the literature regarding young Black BC survivors and GT disclosure and suggests possible areas for future intervention.

Keywords: breast cancer, health communication, health disparities, genetic testing, genetic risk