Expanding Genetic Risk Assessment to Underserved Populations: A Cancer Registry-Based Approach

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Abstract Integrating genetic counseling and testing services for hereditary cancer into clinical care is critical to provide evidence-based cancer prevention and treatment to high-risk populations. Yet, only a small proportion of patients who meet guidelines receive genetic counseling and/or testing, with even lower rates among Black and, rural populations. System-level barriers to access genetic testing, coupled with a workforce shortage of genetic counselors, contribute to the low uptake of genetic counseling and testing services. Through our proposed research, we will test a strategy to streamline genetic counseling and testing services for Black and rural cancer survivors, to improve access to genetic counseling and testing. The overarching goals of the supplement are to evaluate and examine the dissemination of an existing web-based genetic education tool in a population of Black and/or rural cancer patients recruited through the Tennessee state cancer registry to our parent study, who are eligible for but have not yet had genetic testing. We hypothesize that: 1) streamlining genetic counseling through web-based pre-test education will result in significant knowledge gains, and the majority of individuals will feel informed and empowered to make choices about genetic testing; and 2) we will be able to identify different patterns of facilitators and barriers that lead (or do not lead) to accessing genetic counseling and/or testing through use of a novel methodology (i.e., coincidence analysis). We will recruit at least 50 patients with breast, colorectal, endometrial, or prostate cancer who meet current practice guidelines for genetic testing for inherited cancer based on their personal cancer diagnosis. The overarching goals of our effort are to guide the development of sustainable system-level solutions to improve the delivery of genetic counseling services to enhance appropriate testing among cancer patients who meet guidelines yet have not pursued testing, leveraging a public health infrastructure (i.e., the state cancer registry). This transdisciplinary effort to reach diverse cancer patients will inform policy and the development of scalable models for delivering evidence-based genomic care across diverse populations and clinical settings.