Date of Award

Spring 2023

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Shandrea Foster

Abstract

Historically minoritized individuals are underrepresented in genomic research which limits the ability to fully understand genetic variation within the population (Sirugo et al., 2019). This creates bias that questions the effectiveness of guidelines for genetic testing, predictive risk values, and medical management. Disparities in cancer genetics may be attributed to historical events that have cultivated mistrust in research and medicine, institutional bias, provider skepticism in patient reporting of medical symptoms, and limited access to genetic testing (Saulsberry et al., 2013). More exploration is needed to better understand how to increase access and awareness of cancer genetic services to Black and African American patients. This study aimed to identify deficits in cancer genetics awareness within the Black and African American community in South Carolina through perspectives of individuals belonging to this population. Participants were invited to partake in an original online and paper survey. After quality control, 110 participants that self-identified as Black and African American, at or above the age of 18 years old, reported being either unaffected (defined as having no personal medical history of cancer) or affected (defined as having a personal health history of cancer), and a resident of South Carolina were included in data analysis. Quantitative and qualitative questions were utilized to assess health literacy, perception of cancer risk, participant experience in healthcare, and access to genetic testing. Overall, the study identified that most participants were interested in a genetics evaluation for hereditary cancer to learn personal or familial risks, but health awareness of cancer genetics was limited. There was a statistically significant difference in health awareness scores between uninformed participants in comparison to informed participants (p = 0.010). The findings highlight the need for community engagement and educational outreach to increase awareness of and access to genetic counseling and testing for the Black and African American community.

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