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

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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.

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Availability of data and material

The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

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Notes

  1. In this paper, the co-authors have decided, generally, to use “Latinx” as an ungendered umbrella term to describe people who identify culturally, politically, or ancestrally with the peoples and nations of the Latin American and Caribbean region. We understand this is an imperfect term to describe a very wide range of communities but feel it most appropriately matches our intentions among the alternatives.

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Acknowledgements

We wish to thank Jack Chang, Dongmei Li, Kristen Bush, Hongjue Wang, and Margaret Demment for their contributions to the conduct of this study.

Funding

Drs. Dye, Dozier, and Cardona Cordero receive funding from Award Number Grant UL1 TR000042 and TL1 TR002000 from the National Center for Advancing Translational Sciences, National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Center For Advancing Translational Sciences or the National Institutes of Health.

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Authors and Affiliations

  1. University of Rochester, Rochester, NY, USA

    Timothy De Ver Dye, Zahira Quiñones Tavarez, José G Pérez Ramos, Isabel Diana Fernandez, Denisse M Vega Ocasio, Nancy R Cardona Cordero, Ann M. Dozier & Susan W. Groth

  2. Department of Obstetrics and Gynecology, University of Rochester, 601 Elmwood Avenue, Rochester, NY, 14642, USA

    Timothy De Ver Dye

  3. Universidad de Puerto Rico, San Juan, Puerto Rico

    Carmen Vélez Vega

  4. Universidad de Ciencias Medicas, San José, Costa Rica

    Esteban Avendaño & Carmen DiMare Hering

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  1. Timothy De Ver Dye
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Contributions

TDVD conceptualized the study, curated the data, conducted analyses, acquired funding, led the investigation, and principally authored this report. ZQT contributed the original draft, edited, and reviewed the final version. JGPR, CVV, DVO, EA, and NRCC edited and reviewed the final draft. IDF, AD, and SWG conceptualized the project, contributed to the investigation, and edited and reviewed the final draft.

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Correspondence to Timothy De Ver Dye.

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Ethics approval

All procedures performed in this study were in accordance with the ethical standards of the University of Rochester Research Subjects Review Board and with the 1964 Helsinki Declaration and its later amendments. The study was approved by the University of Rochester’s Research Subjects Review Board (#RSRB00054439).

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All participants in this study provided freely-given, informed consent to participate.

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The authors declare no competing interests.

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This work was presented, in part, at the American Society for Human Genetics Annual Meeting, Houston, Texas, October 2019.

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De Ver Dye, T., Tavarez, Z.Q., Pérez Ramos, J.G. et al. Participation in genetic research among Latinx populations by Latin America birth-residency concordance: a global study. J Community Genet 12, 603–615 (2021). https://doi.org/10.1007/s12687-021-00538-z

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