Engaging rural communities in genetic research: challenges and opportunities

Abstract

Statistical analyses of health and disease in rural communities is frequently limited by low sample counts. Still, some studies indicate increased risk for some diseases even after adjustment for known risk factors. It has been hypothesized that the context of community formation in rural areas facilitates the propagation of genetic founder effectspotentially impacting disease susceptibility. However, outright examination of genetic diversity in such communities has not been performed. Our objective was to engage otherwise research-inexperienced rural communities of largely European descent in genomic research in the context of cancer susceptibility. From September 2015 to February 2016, we implemented a systematic process of progressive community engagement. This iterative method sought project buy-in from first the town mayor, then village council. If approved by both, a focus group of community members examined how residents might view the research, informed consent and specimen collection, and issues of privacy. We were successful in engaging three of the four communities approached for the research project. There was universal enthusiasm for the project by all mayors and village councils. The focus groups' main point of discussion involved wording in the informed consent, with little concern regarding the research question or privacy. Perhaps contrary to popular thought, we found each community we approached to be both welcoming and enthusiastic about collaborating in research on genomic diversity. The systematic method of engagement did much to preserve community respect and autonomy and facilitated buy-in.

Public perception of predictive cancer genetic testing and research in Oregon

“…Like prior studies (Lemke et al, 2010; Tong et al, 2014), our findings underscore that family, children, and future generations are motivating factors associated with a higher willingness to participate in genetic research and would be an effective marketing approach when talking with communities across the state (Appendix ). Consistent with prior research describing the importance of community‐based participatory research or community‐engaged approaches (Davis et al, 2018; Dean et al, 2017; Kwan et al, 2018), our participants described local, in‐person recruitment, and snowball (i.e., chain referral) sampling recruitment as being the most effective strategies in their communities. Print format, such as flyers, brochures, and posters, was recommended in public areas and utilization of local news, radio, and television stations was recommended for the best local reach, especially in rural regions (Appendix ).…”

“…Several recent projects have investigated effective communication and recruitment techniques for specific populations (Davis et al, 2018; Dean et al, 2017; McIntyre et al, 2018; Meloni, 2016; Tong et al, 2014), though none have focused on geographic differences among populations, such as rural, urban, and frontier differences, which may geographically influence beliefs about predictive cancer genetic testing. Oregon has a broad geography with the majority of its counties (26 of 36, 72%) consisting of communities designated as rural or frontier (Figure 1).…”

“…To ensure that the increasingly diverse population of the United States (US) has the opportunity to experience the benefits of predictive genetic testing, biorepositories must include samples from diverse populations of individuals. While some studies have found that knowledge and attitudes about genetic research and biorepositories have been positive, with participants expressing interest in research participation (Brothers, Morrison, & Clayton, 2011;Etchegary, 2014;Hull et al, 2008), engagement of minority ethnic and racial populations in biomedical research, especially African Americans, Hispanic/Latinos, Native American/American Indians, and rural communities, continues to be disparate (Blake, Moss, Gaysynsky, Srinivasan, & Croyle, 2017;Davis et al, 2017;Dean et al, 2017;Einterz et al, 2007). Cited reasons for the lack of research engagement include potential lack of awareness, restricted access to referrals, or disinterest in participation, though we must acknowledge that historic abuses in research and a mistrust of medical institutions and the government may also contribute to the underrepresentation of minority ethnic and racial populations in biorepositories and biomedical research (George, Duran, & Norris, 2013;Scharff et al, 2010).…”

“…Several recent projects have investigated effective communication and recruitment techniques for specific populations (Davis et al, 2018;Dean et al, 2017;McIntyre et al, 2018;Meloni, 2016;Tong for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.…”

An Approach to Integrating Health Disparities within Undergraduate Biomedical Engineering Education

“…24 For such US-based disparities, conventional biomedical interventions by specialized experts have begun to fail; simultaneously dismissed by residents as merely community-placed rather than community-based and raising the ire of biomedical professionals and the communities in which they live and/or serve. 11,20 These changing community dynamics have created a critical need for alternative strategies to address health disparities challenges that can be powerfully meet by biomedical engineering via more encompassing undergraduate training. 3 …”