Abstract
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.
Highlights
Genetic and biomedical research rely heavily on voluntary contributions of personal data [1]
An increase in calls for data has led to mounting concerns about data security and privacy [2]. These concerns might lead to lower willingness to participate in biomedical research [3,4,5,6]
We conducted an online survey of a sample of the general population in the Northern provinces of the Netherlands (n = 3019), comprising 2615 participants in a Dutch biobank, and 404 citizens who refused or signalled refusal to contribute to Lifelines or similar large-scale centralized data repository for scientific medical research
Summary
Genetic and biomedical research rely heavily on voluntary contributions of personal data [1]. An increase in calls for data has led to mounting concerns about data security and privacy [2]. These concerns might lead to lower willingness to participate in biomedical research [3,4,5,6]. There is ample evidence that several demographic characteristics are associated with the intention to participate in biobanks, e.g., being highly educated [8,9,10,11], having a partner [6, 12], being non-religious [10, 13] and having better (self-reported) health [8, 14]. Other demographic characteristics are more inconsistently associated, such as being older [3, 8, 15] or younger [10, 11] vs. no age-effect [9, 16, 17]; being male [3, 17] or female [16] vs. no gender effect [9, 10]
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