Motives for withdrawal of participation in biobanking and participants\u2019 willingness to allow linkages of their data

Reinder Broekstra,Ronald P Stolk,Judith L Aris-Meijer,Els L M Maeckelberghe,Sabine Otten

doi:10.1038/s41431-021-00997-5

Reinder Broekstra, Ronald P Stolk + Show 3 more

Open Access

https://doi.org/10.1038/s41431-021-00997-5

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Abstract

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.

Highlights

Continuous and full participation of members of the public in data repositories in the medical field is essential for effective scientific research
We found that our study sample, stratified by sex and age (M = 56, standard deviations (SD) = 15.88), has more individuals with a high educational level, registered robustly related to lower willingness to participation [6, 26, 27]. partner and good self-reported health compared to the Lifelines
Our primary focus was on motivations of and beyond self-interest in the health care context, we investigated these motivations relating to a wider context, such as natural environmental values [43]

Summary

INTRODUCTION

Continuous and full participation of members of the public in data repositories in the medical field is essential for effective scientific research. Several studies suggest that prosocial attitudes and trust in others are especially important factors that independently relate to positive decisions regarding participation [24, 25] Some of these characteristics may be positively related to withdrawal of participation, depending on the specific context of the biobank, e.g., studies in Europe, United States and Australia showed that concerns about privacy and confidentiality were. Societal trust: We identified trust as a key factor of participation and non-participation in biobanking This trust can relate to the general trust in society and a domain-specific trust in research, especially in case of data linkage in research. In the DM&H of different types of research organisations

RESULTS

12. Societal trust

DISCUSSION

Findings

CONCLUSION

ETHICAL APPROVAL