Trust in Centralized Large-Scale Data Repository
| Autor: | Sabine Otten, Reinder Broekstra, Judith L Aris-Meijer, Els Maeckelberghe, Ronald P. Stolk |
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| Přispěvatelé: | Life Course Epidemiology (LCE), Lifestyle Medicine (LM), Social Psychology |
| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
COMMERCIALIZATION
PERCEPTIONS Big data Information repository Empirical Studies on Big Data and Data Sharing Informed consent big data PARTICIPANTS Qualitative Research media_common 0303 health sciences Informed Consent Distrust INFORMED-CONSENT Communication Data Collection 030305 genetics & heredity 06 humanities and the arts INTENTION Biobank BIOBANK RESEARCH HEALTH Psychology Social Psychology DISTRUST media_common.quotation_subject justice/participant selection/inclusion/recruitment Internet privacy 0603 philosophy ethics and religion Morals participant selection decision making Education 03 medical and health sciences cohort study Humans COHORT Justice (ethics) Data collection business.industry the Netherlands trust DECISION justice inclusion recruitment biorepositories biobanks 060301 applied ethics business biorepositories/biobanks Qualitative research qualitative methods |
| Zdroj: | Journal of empirical research on human research ethics, 15(4), 365-378. SAGE Publications Inc. Journal of Empirical Research on Human Research Ethics |
| ISSN: | 1556-2646 |
| Popis: | Exponential increases in digital data and calls for participation in human research raise questions about when and why individuals voluntarily provide personal data. We conducted 36 in-depth interviews with ex-participants, participants, and nonparticipants in a biobank to identify key factors influencing trust in centralized large-scale data repository for human research. Our findings indicated that trust depends strongly on whether such data repository benefits the public, the interests of data collectors, the characteristics of the collected data, and application of informed consent for retaining control over personal data. Concerns about the aims and range of data repository appeared to influence withdrawal of participation. Our findings underscore ethical and practical issues relating to data collection and consent procedures in human research. |
| Databáze: | OpenAIRE |
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