Racial and Ethnic Disparities in Genomic Healthcare Utilization, Patient Activation, and Intrafamilial Communication of Risk among Females Tested for BRCA Variants: A Mixed Methods Study

• Published in: Genes 2023-07, Vol.14 (7), p.1450
• Main Authors: Hesse-Biber, Sharlene, Seven, Memnun, Shea, Hannah, Heaney, Madeline, Dwyer, Andrew A
• Format: Article
• Language: English
• Subjects: Behavior; Black people; Breast cancer; Breast Neoplasms - genetics; Communication; Decision making; Education; Ethnicity - genetics; Female; Genetic counseling; Genetic screening; Genetic Testing; Genomics; Health care; Health services utilization; Humans; Medical research; Minority & ethnic groups; Mixed methods research; Mortality; Ovarian cancer; Patient Acceptance of Health Care; Patient Participation; Patient satisfaction; Patients; Perceptions; Racial discrimination; Racism; Sociodemographics; Surveys; Womens health
• ISSN: 2073-4425; 2073-4425
• DOI: 10.3390/genes14071450

This study aimed to gain a deeper understanding of genomic healthcare utilization, patient activation, and intrafamilial risk communication among racially and ethnically diverse individuals tested for variants. We employed an explanatory, sequential, mixed-methods study guided by the Theory of Planned Behavior. Participants completed an online survey, including sociodemographic, medical history, and several validated instruments. A subset of participants participated in in-depth, semi-structured interviews. A total of 242 women were included in the quantitative analyses. The majority of survey participants identified as non-Hispanic white (NHW) (n = 197, 81.4%) while 45/242 (18.5%) identified as black, Indigenous, and people of color (BIPOC). The NHW participants were more likely to communicate genetic test results with healthcare providers, family, and friends than BIPOC participants ( 0.05). BIPOC participants had lower satisfaction with testing decisions and significantly higher ratings of personal discrimination, fatalism, resilience, uncertainty, and lower patient activation scores ( 0.05). Participants with higher education, greater satisfaction with testing decisions, and lower resilience are more likely to communicate test results with family members through the mediating effect of patient activation. Bridging disparities to ensure that genomic healthcare benefits all people may demand theory-driven, multi-level interventions targeting the individual, interpersonal, and healthcare system levels.