Trust in Centralized Large-Scale Data Repository: A Qualitative Analysis.

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ID: 71178
2019
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Abstract
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.
Reference Key
broekstra2019trustjournal Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Broekstra, Reinder;Aris-Meijer, Judith;Maeckelberghe, Els;Stolk, Ronald;Otten, Sabine;
Journal journal of empirical research on human research ethics : jerhre
Year 2019
DOI
10.1177/1556264619888365
URL
Keywords
Cohort study decision making big data trust qualitative methods the netherlands biorepositories/biobanks justice/participant selection/inclusion/recruitment

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