ArticleEuropean journal of human genetics : EJHG2022
Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.
Article in European journal of human genetics : EJHG, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed.
- Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries.Journal of community genetics · 2026Article
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- Incorporating biobanking into the future of healthcare: exploring patient and healthcare worker perspectives at a Canadian tertiary academic hospital.European journal of human genetics : EJHG · 2025Article
- Home-based self-collection of biological samples, including vaginal swabs: a mixed methods study for Britain's fourth National Survey of Sexual Attitudes and Lifestyles (Natsal-4).Sexually transmitted infections · 2025Article
- The Impact of Trust and the Role of the Opt-Out Mechanism in Willingness to Share Health Data via Electronic Health Records in Germany: Telephone Survey Study.JMIR human factors · 2025Article
- Health data sharing in Germany: individual preconditions, trust and motives.Frontiers in public health · 2025Article
- "Using dried blood spots beyond newborn screening - is Hong Kong ready?": navigating the intersection of innovation readiness, privacy concerns, and Chinese parenting culture.BMC public health · 2024Article
- The Impact of Surgery-Related Emotional Distress on Long-Term Outcome After Colorectal Surgery: An Observational Follow-Up.Journal of clinical medicine · 2024Article
- Genetic tests as the strongest motivator of cooperation between participants and biobanks-Findings from cross-sectional study.Frontiers in genetics · 2024Article
- Article
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
- Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Personal Health Record for Personalizing Research and Care Trajectories: A Proof of Concept Pilot with Diet in Inflammatory Bowel Diseases.Journal of personalized medicine · 2023Article
- Willingness of Older Canadians with HIV to Participate in HIV Cure Research Near and After the End of Life: A Mixed-Method Study.AIDS research and human retroviruses · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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