Values of trust and participation in scientific data repositories

Digitalisation has stimulated the generation, storage and use of data. Moreover, it has created new research opportunities, including for biomedical science. The use of 'big data' can be decisive for better understanding and improving health. However, this change is disruptive, as it alters the flow of information and ideas about research and knowledge acquisition. Previous studies show that different forms of trust are key for understanding participation and non-participation in data repository. Therefore, in this multidisciplinary project we investigated the factors associated with participation and non-participation in data repositories in different ways. Our results show that societal trust, such as trust in government and other individuals, and pro-social values - defined here as involving others (their interest) - partially explain the different views and choices of participants and non-participants. We demonstrate the dilemma of contributing to society without ignoring individual interests and concerns. Moreover, we show how participants, ex-participants and non-participants deal with this differently. As such, the study is one of the first to indicate how trust can influence willingness to participate and specially to stop participating, depending on beliefs about society and appreciation of the context of data collection. The research has several implications and suggests various interventions to address ethical and practical concerns. In this way, this dissertation and subsequent research will help to determine how to proceed with large-scale data repository on health-related and other socially relevant topics

Motives for withdrawal of participation in biobanking and participants’ willingness to allow linkages of their data

Data repositories, like research biobanks, seek to optimise the number of responding participants while simultaneously attempting to increase the amount of data donated per participant. Such efforts aim to increase the repository’s value for its uses in medical research to contribute to improve health care, especially when data linkage is permitted by participants. We investigated individuals’ motives for participating in such projects and potential reasons for their withdrawal from participation in a population-based biobank. In addition, we analysed how these motives were related to various characteristics of the participants and their willingness to permit data linkage to their personal data for research. These questions were explored using a sample of participants in the Dutch Lifelines biobank (n = 2615). Our results indicated that motives for participation and withdrawal were premised on benefits or harm to society and to the individuals themselves. Although general values and trust both played key roles in participation, potential withdrawal and willingness to permit data linkage, they were differentially associated with motives for participation and withdrawal. These findings support and nuance previous findings by highlighting the distinctiveness and complexity of decision making regarding participation in or withdrawal from data donation. We suggest some new directions for improving recruitment, retention and safeguarding strategies in biobanking. In addition, our data provide initial evidence regarding how factors may relate with the probability that individuals will agree to data linkages, when controlling for their unique effects. Future research should further investigate how perceptions of harm and benefits may influence decision making on withdrawal of participation

Demographic and prosocial intrapersonal characteristics of biobank participants and refusers:the findings of a survey in the Netherlands

Research in genetics relies heavily on voluntary contributions of personal data. We aimed to acquire insights into the differences between participants and refusers of participation in a Dutch population-based biobank. Accordingly, we assessed the demographic and prosocial intrapersonal characteristics of respondents who participated (n = 2615) or refused to participate (n = 404) in the Lifelines biobank and databank. Our results indicated that health-related values critically influence participation decisions. The participation threshold for Lifelines was determined by an absence of health-related values and of trust in government. Therefore, considering these factors in communication and recruitment strategies could enhance participation in biomedical research. No indications were found of a stronger general prosociality of participants or their trust in researchers beyond the context of biobanking. This emphasizes the contextual understanding of the decision of participation in biobanking. Our findings may contribute to improving recruitment strategies by incorporating relevant values and/or highlighting prosocial benefits. Moreover, they foreground the need to address trust issues in collaborations between data repositories and commercial companies. Future research should explore how prosocial intrapersonal characteristics drive participation and withdrawal decisions and relate to contextual attributes

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

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