Participation in genetic research among Latinx populations by Latin America birth-residency concordance: a global study

J Community Genet. 2021 Oct;12(4):603-615. doi: 10.1007/s12687-021-00538-z. Epub 2021 Aug 10.

Abstract

Latinx populations are underrepresented in DNA-based research, and risk not benefiting from research if underrepresentation continues. Latinx populations are heterogenous; reflect complex social, migration, and colonial histories; and form strong global diasporas. We conducted a global study using a survey tool (Amazon's Mechanical Turk portal) to ascertain willingness to participate in genetic research by Latin America birth-residency concordance. Participants in the global study identified as Latinx (n=250) were classified as the following: (1) born/live outside of Latin America and the Caribbean (LAC), (2) born within/live outside LAC, and (3) born/live within LAC. Latinx were similarly likely to indicated they would participate DNA-based research as their non-Latinx counterparts (52.8% vs. 56.2%, respectively). Latinx born and living in LAC were significantly more willing to participate in DNA-based research than Latinx born and living outside of LAC (OR: 2.5; 95% CI: 1.3, 4.9, p<.01). Latinx indicating they would participate in genetic research were more likely to trust researchers (<.05), believe genetic research could lead to better understanding of disease (<.05), and that genetic research could lead to new treatments (p<.05) when compared with Latinx not interested in participating in genetic research. In summary, significant variation exists in genetic research interest among Latinx based on where they were born and live, suggesting that this context itself independently influences decisions about participation. Cultivating and investing in a research ecosystem that addresses, values, and respects Latinx priorities, circumstances, and researchers would likely increase research participation and, even more importantly, potentially impact the inequitable health disparities disproportionately represented in Latinx communities.

Keywords: Attitudes; Diaspora; Genetic; Genomic; Hispanic; Latin America; Latinx; Research participation; Social determinants.