Abstract
Aim:We explore attitudes from the public in Costa Rica regarding willingness to donate DNA data for research.Materials & methods:A total of 224 Costa Rican individuals answered the anonymous online survey ‘Your DNA, Your Say’. It covers attitudes toward DNA and medical data donation, trust in research professionals and concerns about consequences of reidentification.Results & conclusion:Most individuals (89%) are willing to donate their information for research purposes. When confronted with different potential uses of their data, participants are significantly less likely to donate data to for-profit researchers (34% willingness to donate). The most frequently cited concerns regarding donation of genetic data relate to possible discrimination by health/life insurance companies and employers. For the participants in the survey, the most trusted professionals are their own medical doctor and nonprofit researchers from their country. This is the first study regarding attitudes toward genetic data donation in Costa Rica.
Highlights
• We explored the attitudes of 224 Costa Rican individuals regarding donation of their DNA and medical data for research purposes
• Participants answered the ‘Your DNA, Your Say’ anonymous survey in Spanish. • Your DNA, Your Say is an international project which aims to collect and compare the views of individuals from different countries on sharing of genetic data. • 89% of the participants are willing to donate their DNA and medical information to at least one kind of research professional (from three categories: medical doctor, nonprofit researcher and for-profit researcher). • Willingness to donate differs significantly according to the potential user of the data; it is much lower in the case of for-profit researchers as recipients of the data. • The most frequently cited concerns surrounding data reidentification relate to possible discrimination by health or life insurance companies and employers. • Participants were most likely to trust their own medical doctor and nonprofit researchers from their own country with their data. • We found a greater willingness to share genetic information for research than has been reported for other non-Latin American countries, coupled with a high level of trust in nonprofit research and health professionals
In spite of this bias, our results reflect interesting aspects regarding the attitude of this particular set of individuals toward donation of genetic data
Summary
We explore attitudes from the public in Costa Rica regarding willingness to donate DNA data for research
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