Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 15, Issue 4, Pages 365-378Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264619888365
Keywords
trust; big data; biorepositories; biobanks; cohort study; decision making; qualitative methods; the Netherlands; justice; participant selection; inclusion; recruitment
Categories
Funding
- Netherlands Organisation for Scientific Research from the program Responsible Innovation [313-99-313]
- Dutch Government
- Netherlands Organization of Scientific Research [175.010.2007.006]
- Northern Netherlands Collaboration of Provinces (SNN)
- European fund for regional development
- Dutch Ministry of Economic Affairs
- Pieken in de Delta
- Province of Groningen
- Province of Drenthe
- Target project
- BBMRI-NL
- University of Groningen
- University Medical Center Groningen, Netherlands
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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.
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