Understanding diverse perspectives on genetic research through focus group talk

Abstract:
While genetic research (GR) is fueling discoveries in fields like precision medicine, there is a growing concern that underrepresentation of racial and ethnic populations in GR will limit access to its benefits and subsequently worsen health disparities. This study aimed to understand GR perceptions among members from underrepresented communities by studying discourse and language use in focus group discussions. Nine focus groups were conducted with adults from three populations: African American, Hispanic/Latino, and Native American; 53 women and 15 men participated. Data were analyzed using methods of discourse and content analysis. Discourse analysis highlighted how conceptualization of science and family—rooted in historical experiences—can influence views on GR risks and benefits to self and others. The use of focus group discourse in particular provided an opportunity for group sense making around the science and ethics of GR. Content analysis highlighted differences between the language use of focus group moderators, who spoke about scientific discovery and research oversight, and that of participants, whose talk highlighted ancestral bloodline, personal risk, and ethical concerns. The findings can inform efforts to bolster GR participation, including recruitment and educational campaigns. However, they also challenge researchers to consider areas of discordance between their own and community members’ conceptualization of the risks and benefits of GR participation, including the notion of future and family benefit.