Journal of community genetics · 2026
Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries.
СтатьяНазвание и аннотация: Перевод в очереди
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Romero-Ramírez Antonella, Alfaro-Redondo Ronald, Macaya-Trejos Gabriel, Milne Richard, Robarts Lauren, Middleton Anna, Raventós Henriette, Chavarría-Soley Gabriela
Аннотация
BACKGROUND: "Your DNA, Your Say" (YDYS) is an anonymous online survey covering attitudes towards genomic and medical data sharing for research purposes. This study aims to identify factors influencing willingness to donate genetic information in Latin America and explore concerns regarding data donation.
METHODS: Responses to the YDYS survey were collected using a mixed recruitment strategy for participants in Argentina (N = 919), Brazil (N = 1,349), Costa Rica (N = 469), and Mexico (N = 1,347). The survey assessed willingness to donate genetic and medical data, perceptions regarding third-party access, use and disclosure of such data, levels of trust, and concerns about potential harms resulting from loss of anonymity. Sociodemographic information was also collected. Three indexes-Willingness to Donate, Know Me, and Against Me-were constructed, and regression analyses were conducted to examine associations between sociodemographic variables and these measures.
RESULTS: Willingness to donate data is higher when profit is not involved. Concerns measured by the "Know Me" index are lower among women and individuals with a high willingness to donate, and higher for individuals with tertiary education. For the "Against Me" index, concern decreases with age and willingness to donate, and increases for people that have children, are religious, and have university education. In general, young age, having children, tertiary education level, and showing reduced levels of concern are associated with a higher willingness to donate genetic information.
CONCLUSIONS: This is one of the first studies exploring attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies.
METHODS: Responses to the YDYS survey were collected using a mixed recruitment strategy for participants in Argentina (N = 919), Brazil (N = 1,349), Costa Rica (N = 469), and Mexico (N = 1,347). The survey assessed willingness to donate genetic and medical data, perceptions regarding third-party access, use and disclosure of such data, levels of trust, and concerns about potential harms resulting from loss of anonymity. Sociodemographic information was also collected. Three indexes-Willingness to Donate, Know Me, and Against Me-were constructed, and regression analyses were conducted to examine associations between sociodemographic variables and these measures.
RESULTS: Willingness to donate data is higher when profit is not involved. Concerns measured by the "Know Me" index are lower among women and individuals with a high willingness to donate, and higher for individuals with tertiary education. For the "Against Me" index, concern decreases with age and willingness to donate, and increases for people that have children, are religious, and have university education. In general, young age, having children, tertiary education level, and showing reduced levels of concern are associated with a higher willingness to donate genetic information.
CONCLUSIONS: This is one of the first studies exploring attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies.