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Attitudes of Costa Rican individuals towards donation of personal genetic data for research

Published version
Peer-reviewed

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Authors

Chavarria-Soley, Gabriela  ORCID logo  https://orcid.org/0000-0002-7153-4072
Francis-Cartin, Fernanda  ORCID logo  https://orcid.org/0000-0002-1756-8001
Jimenez-Gonzalez, Fabiola  ORCID logo  https://orcid.org/0000-0001-6504-9153
Ávila-Aguirre, Alejandro  ORCID logo  https://orcid.org/0000-0001-7171-6629
Castro-Gomez, Maria Jose  ORCID logo  https://orcid.org/0000-0002-5599-0027

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.

Description

Keywords

Research Article, attitudes, data sharing, donation, genomics, survey

Journal Title

Personalized Medicine

Conference Name

Journal ISSN

1741-0541
1744-828X

Volume Title

18

Publisher

Future Medicine Ltd
Sponsorship
Wellcome Trust (206194)