“Es Lindo, Pero Estamos Perdidos”—Characterizing Facilitators and Barriers to Clinical Genetic Testing for Latino Populations

As genetic testing in clinical settings has been increasingly implemented, Latino populations are not benefiting at the same rates. Although many Latino individuals express a strong interest to use genetic testing, significant disparities exist with uptake. This study used semi-structured qualitative elicitation interviews to identify relevant referents (network of family/friends), socio-environmental facilitators, and barriers to genetic testing for a Latino-only cohort. The interviews explored attitudes toward genetic testing; beliefs about genetic testing, social norms, and control over ability to have genetic testing; and confidence in ability to test while probing upon perceived barriers and facilitators. Interviews were conducted with 19 self-identifying Latino individuals older than 18 years of age who spoke English or Spanish, stratified by previous testing or none. Respondents had overwhelmingly positive attitudes towards genetic testing. Many noted they simply did not understand the purpose of testing, what results could mean, and what results could be used for. Further, related to this limited knowledge, many noted their primary care providers seldom mention genetic testing. Finally, language preferences seem to be a critical barrier, as all those who have tested reported receiving services in English. Despite positive attitudes, strong referent networks, and strong interest towards genetic testing uptake for respondents, many also mentioned they had no idea how to test. More outreach is needed to educate Latino groups, and their providers, about genetic testing, while creating more systemic facilitators in genetic testing service delivery to encourage testing uptake.