Motives of contributing personal data for health research: (non-)participation in a Dutch biobank

Abstract

Background: Large-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal. Methods: We conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a threegeneration, population-based biobank in the Netherlands. The interviews focused on the respondents' decisionmaking processes relating to their participation in a large-scale, centralized repository for health research data. Results: The decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants' perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants. Conclusions: Our findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures.

Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases

“…The participants mentioned the UMCG having a good reputation and their positive experiences with the medical center and the team responsible for the pilot. This amplifies earlier findings on the importance of experiences and institutional reputation for trust in a data repository [9].…”

“…Moreover, PHRs allow the return of individual findings from research without violating privacy, which can improve research participation and retainment via stronger engagement. Multiple studies found that receiving these personal benefits are an important and stimulating factor in the decision to participate [8,9]. These benefits can apply to the research setting as well, since the potential of PHRs to use data and insights for multiple purposes creates a hybrid setting including both research and healthcare.…”

“…Moreover, PHRs allow the return of individual findings from research without violating privacy, which can improve research participation and retainment via stronger engagement. Multiple studies found that receiving these personal benefits are an important and stimulating factor in the decision to participate [8,9].…”

Public Attitude towards Biobanking: An Italian University Survey

“…A quarter of participants raised a concern about the confidentiality of information (privacy) and the commercialization of biological samples. These were also the main concerns expressed in other studies [ 6 , 17 , 18 , 19 , 20 ], especially when genetic data are involved [ 13 ]. In our study the percentage of subjects willing to participate in biobanking decreased by about 10% when respondents were asked if they were willing to provide, in addition to biological samples, health and lifestyle data.…”

“…As with many other similar studies, it involved a selected academic population, and the response rate, even if higher than those in many other studies, was quite low. The few studies involving the general population seem to show results that are not far from those coming from selected populations [ 17 , 20 , 35 ]. This suggests that the estimations made by our study could be used, even if with some degree of caution, to plan the involvement of the population in cohort studies based on biobanking.…”