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

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.

Polygenic prediction of bipolar disorder in a Latin American sample

“…Although the data we present addresses a recognized gap in genetic research in psychiatry (De Ver Dye et al, 2021), two limitations in our study must be considered. The lack of previous BD GWAS in LAT populations impedes us from having a LAT discovery GWAS to inform our PRS.…”

“…Unfortunately, genetic studies in psychiatry have primarily focused on EUR populations (Peterson et al, 2019), failing to address heterogeneity arising from population diversity (De Ver Dye et al, 2021; Martin et al, 2019). For BD, few GWAS have been performed outside of EUR ancestry, with the exception of an initial small study in an African American sample and a more recent larger study of BD and schizophrenia in a diverse cohort that included more than 1,000 African American participants with BD (Bigdeli et al, 2021; Smith et al, 2009).…”

The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

“…The rapid review reported concerns about the assumptions made regarding non-participation in genomic studies. Concerns included those related to privacy (Buseh et al, 2013; Abadie and Heaney, 2015 ; Simon et al, 2017 ; Garrison et al, 2019 ; Lee et al, 2019 ; Reddy et al, 2020 ; De Ver Dye et al, 2021 ; Hendricks-Sturrup and Johnson-Glover, 2021 ), stigmatisation (Marsh et al, 2013 ; Abadie and Heaney, 2015 ; Faure et al, 2019 ), commodification of data leading to dispossession (Abadie and Heaney, 2015 ) and re-use of data beyond the scope of the original research 9 (de Vries et al, 2014 ); for example, by commercialisation of the research and unjust corporate profiteering (Lee et al, 2019 ). It was noted that whilst such concerns may be common amongst other groups, they might be heightened for those from underserved groups due to experiences of stigmatisation, discrimination and prejudicial judgement (Abadie and Heaney, 2015 ), 10 particularly in cases of disease-related stigma (Ali-Khan and Daar, 2010 ; Faure et al, 2019 ).…”

Discovery of novel genetic syndromes in Latin America: Opportunities and challenges

“…It is well known that many ancestries are underrepresented in genomic databases and studies. Considering the heterogeneity of the LatAm population, the continent is especially sensitive to this (De Ver Dye et al, 2021;Borda et al, 2023). The gap is critical when preliminary analyses of the ClinGen criteria are applied, especially when an inherited but undescribed variant is detected in a candidate gene in databases as it is not possible to discard or consider it with confidence for further analyses (Step 5, Figure 3).…”