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.