Community-Based Hereditary Breast and Ovarian Cancer Family History Assessment and Genetic Testing among Spanish-Speaking Hispanic/Latina Women in California

Abstract

Abstract Breast cancer is the most common cancer among women in the United States and the leading cause of cancer incidence and mortality among Hispanic/Latina (H/L) women. For women with a genetic predisposition to hereditary breast and ovarian cancer (HBOC), genetic counseling has been shown to aid in the decision-making process and engagement in risk-reducing strategies for cancer prevention and early detection. However, H/L women are less likely to receive genetic testing and undergo genetic counseling than non-Hispanic White women. We developed a promotores-led virtual HBOC outreach, education, and risk assessment program [Tu Historia Cuenta (THC)] for Spanish-speaking H/L women in California. In this study, we describe genetic testing uptake, testing results, and participants’ experiences. Participants (N = 1,286) responded to a demographic and HBOC family history survey. Those identified as high risk based on the family history survey were offered free genetic testing with a hereditary cancer panel. Of the 111 women identified as high risk, 18 had been previously tested, and 33 received genetic testing through THC, resulting in a 35.5% completion rate for those offered testing. Among the 51 women with test results, 6 had a positive result, 3 were carriers of a variant of unknown significance, 38 had a negative result, and 4 participants tested before recruitment did not know their results. Participants who tested through THC indicated satisfaction with the genetic testing process. These findings underscore the importance of simplifying access and exploring additional factors influencing H/L women’s decision to receive testing beyond previously established cost, awareness, and knowledge barriers. Significance: Utilization of genetic testing and genetic counseling among H/L women in the United States remains limited. The promotores-led THC is one of the first community-based outreach programs for Spanish-speaking H/L women outside of a healthcare setting. Overcoming barriers such as language, cost, and knowledge, we identified additional obstacles such as testing kit activation and fear of future costs.