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.
Highlights
In recent years, there has been an exponential increase in digital data and calls for participation in human research through the provision of personal information for centralized large-scale data repositories, especially in the medical sciences
We identified multiple conditions that relate to experiencing the trust required to provide personal data in the context of biobanking and centralized large-scale data repository
Our analysis of the interview transcripts revealed four major themes that featured in the formation of trust and in decisions made by individuals about sharing their data
Summary
There has been an exponential increase in digital data and calls for participation in human research through the provision of personal information for centralized large-scale data repositories, especially in the medical sciences. The decision to participate in a biobank entails accepting unknown shortterm and long-term privacy risks concerning the confidentiality of personal data, the use of such data for unintended research purposes, or possible stigmatization (boyd & Crawford, 2012; Gibson et al, 2017; Graeff & Harmon, 2002; Mittelstadt & Floridi, 2016; Nobile et al, 2016; Rivera et al, 2017) This situation results in a social dilemma in which the collective interest of promoting the public good and the individual interest of keeping data or information private are opposed. Voluntary participation in research in a context of openly shared information requires a greater degree of trust in the data repositories and their use in human research, compared with a context in which enrichment or sharing of data does not occur (Gibson et al, 2017; van Staa et al, 2016)
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