Your DNA, your concerns: Public attitudes toward donation of genomic data for research in four Latin American countries

Background "Your DNA, Your Say" is an anonymous online survey covering attitudes towards genomic and medical data sharing for research purposes. This study aims to identify factors that influence willingness to donate genetic information in Latin America and explore concerns regarding data donation. Methods Responses to the “Your DNA, Your Say” survey from participants in Argentina, Brazil, Costa Rica, and Mexico were analyzed. We created three indexes: a. “Willingness to donate” reflects disposition towards data sharing, b. “Know Me” measures levels of concern if genetic/medical information becomes known to others, c. “Against Me” measures levels of concern regarding direct negative consequences of loss of anonymity. Regression analyses were used to explore the relationship between sociodemographic variables and the three indexes. 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 values are higher 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 what shapes attitudes toward genetic data sharing in Latin America. This knowledge can guide strategies to ensure inclusion and diversity in future genetic studies.