Abstract
AbstractGenetic research presents numerous ethical, legal, and social implications (ELSI), particularly when the research involves collaborations between investigators in high and low-income countries. Some ELSI issues are universal, and others are specific to context and culture. This study investigates perceptions of genetic research in Nicaragua, Central America, where local and U.S. based researchers have collaborated for over a decade. A total of 43 residents from northwestern Nicaragua, a region with high mortality rates attributed to chronic kidney disease of non-traditional causes (CKDnt), were interviewed, including research participants in ongoing studies (n = 36), health professionals (n = 3), labor leaders (n = 2), and family members of research participants (n = 2). Questions focused on informed consent, data-sharing, and post-study expectations. Audio recordings of interviews conducted in Spanish were transcribed and translated into English. English transcripts were coded and analyzed using NVivo 12 software. The lack of familiarity with terms in the consent form presented a barrier to participant comprehension of key elements of the genetic research study, raising concerns about the validity of informed consent. Research participants often viewed their participation as access to health care. Health professionals emphasized the importance of long-term partnerships between foreign-based researchers and local health institutions. Leaders and family members recommended that they be informed of research studies and allowed the opportunity to consent, as they felt the benefits and risks of research also apply to them. Our findings identified genetic research practices to be improved upon in order to be more responsive to the contextual realities of collaborators living in low-resource settings.
Funder
U.S. Department of Health & Human Services | National Institutes of Health
Publisher
Springer Science and Business Media LLC
Subject
Genetics (clinical),Genetics
Reference50 articles.
1. Molster CM, Bowman FL, Bilkey GA, Cho AS, Burns BL, Nowak KJ, et al. The evolution of public health genomics: exploring its past, present, and future. Front Public Health [Internet]. 2018;6:247. https://doi.org/10.3389/fpubh.2018.00247.
2. Gao M, Tang H, Zheng X, Zhou F, Lu W. Association analysis of GWAS and candidate gene loci in a Chinese population with coronary heart disease. Int J Clin Exp Med [Internet] 2015;8:7497–506. https://pubmed.ncbi.nlm.nih.gov/26221293/.
3. Cai L, Wheeler E, Kerrison ND, Luan J, Deloukas P, Franks PW, et al. Genome-wide association analysis of type 2 diabetes in the EPIC-InterAct study. Sci Data [Internet]. 2020;7:393. https://doi.org/10.1038/s41597-020-00716-7.
4. Price PM, Hirschhorn K, Safirstein RL. Chronic kidney disease and GWAS: “the proper study of mankind is man”. Cell Metab [Internet]. 2010;11:451–2. https://doi.org/10.1016/j.cmet.2010.05.009.
5. Mudd-Martin G, Cirino AL, Barcelona V, Fox K, Hudson M, Sun YV, et al. Considerations for cardiovascular genetic and genomic research with marginalized racial and ethnic groups and Indigenous peoples: a scientific statement from the American Heart Association. Circ Genom Precis Med [Internet]. 2021;14:e000084 https://doi.org/10.1161/HCG.0000000000000084.