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

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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.

Original languageEnglish
Pages (from-to)365-378
Number of pages14
JournalJournal of empirical research on human research ethics
Volume15
Issue number4
Early online date18-Nov-2019
DOIs
Publication statusPublished - 1-Oct-2020

Keywords

  • trust
  • big data
  • biorepositories
  • biobanks
  • cohort study
  • decision making
  • qualitative methods
  • the Netherlands
  • justice
  • participant selection
  • inclusion
  • recruitment
  • INFORMED-CONSENT
  • BIOBANK RESEARCH
  • PARTICIPANTS
  • HEALTH
  • COMMERCIALIZATION
  • PERCEPTIONS
  • INTENTION
  • DISTRUST
  • DECISION
  • COHORT

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