A road map for the future: An exploration of attitudes, perceptions, and beliefs among African Americans to tailor health promotion of cancer-related genetic counseling and testing

Abstract

African Americans (AA), the second largest racial/ethnic minority group in the United States (US), carry the largest mortality burden of cancer compared with other racial/ethnic groups (Cancer Facts & Figures for African Americans, 2019-2021, American Cancer Society).One solution to address this disparity is through cancer-related genetic counseling and testing (CGT). Although CGT is utilized among the general population, it remains underutilized among AA populations. Community-engaged and community-driven health promotion programs within faith-based organizations (FBOs) have been successfully implemented and delivered among AA populations (Israel et al., American Journal of Public Health, 100, 2010, 2094). FBOs are well positioned for cancer-related health promotion and equipped as conduits of health education and information distribution for cancer prevention. In the present pilot study, a community-based participatory approach (CBPR) was used to collect exploratory data on attitudes, perceptions, and beliefs toward CGT and uptake among an AA sample in the Midwest. Focus groups were conducted in two churches where respondents (N=34) answered a pre-focus group survey prior to a discussion. Respondents were largely unaware of CGT and thought of testing as primarily for ancestral discovery and not for an inheritable disease. Themes identified through qualitative analysis included emotional experiences with cancer; perception of cancer risk; different pictures of genetic testing; other things to worry about; trust in the healthcare system/faith in God and the healthcare system; and ideas and insights regarding promotion of CGT. These primary themes showed participants' perceptions of CGT were shaped by their experiences with cancer, faith, faith communities/FBOs, and cost and access to CGT. Overall, participants within these organizations had positive perceptions about the church as a conduit of genetic testing information but had mixed opinions about the rationale for completing CGT. These findings have implications for genetic counselors, medical providers, and health promotion personnel as to how AA faith populations view CGT and the utility of FBOs as promoters of CGT information.

Keywords: African Americans; attitudes; beliefs; communication; disparities; diversity; education; faith-based organizations; genetic counseling; genetic testing; health behavior; health communication; health promotion; predictive genetic testing; public health; risk perception.