Excerpt from article:
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.
Our study’s aim was to explore attitudes from people in Costa Rica regarding their willingness to donate their own genetic data. A total of 224 Costa Ricans answered an anonymous survey on this topic, as well as on trust in researchers and concerns about data donation. We found that most persons are willing to donate their medical and genetic information for research purposes. However, willingness to donate is not the same for all potential uses of the data. People are more willing to give their information to their medical doctors or for nonprofit research than they are in the case of for-profit research. The most frequently cited concerns regarding donation of genetic data relate to possible discrimination by health/life insurance companies and employers. This is the first study regarding attitudes toward genetic data donation in Costa Rica.
Chavarria-Soley G, Francis-Cartin F, Jimenez-Gonzalez F, Ávila-Aguirre A, Castro-Gozez MJ, Robarts L, Middleton A, Raventós H (2021) Attitudes of Costa Rican individuals towards donation of personal genetic data for research. Personalized Medicine, vol 18, no. 2, pp 141-152