ArticleBMC medical ethics2020
Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.
Article in BMC medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.Public understanding of science (Bristol, England) · 2024Pooled it
- High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology-Implications for Real-World Data Platform Governance: Cross-Sectional Study.Journal of medical Internet research · 2026Article
- Can biosampling really be "non-invasive"? An examination of the socially invasive nature of physically non-invasive biosampling in urban and rural Malawi.Global bioethics = Problemi di bioetica · 2024Article
- Genetic tests as the strongest motivator of cooperation between participants and biobanks-Findings from cross-sectional study.Frontiers in genetics · 2024Article
- Establishing a Pregnancy Lyme Disease Biobank.Methods in molecular biology (Clifton, N.J.) · 2024Article
- Public attitudes towards genomic data sharing: results from a provincial online survey in Canada.BMC medical ethics · 2023Article
- Public's awareness of biobanks and willingness to participate in biobanking: the moderating role of social value orientation.Journal of community genetics · 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
- Public Attitude towards Biobanking: An Italian University Survey.International journal of environmental research and public health · 2022Article
- Exploring how biobanks communicate the possibility of commercial access and its associated benefits and risks in participant documents.BMC medical ethics · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundLarge-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.
methodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents' decision-making processes relating to their participation in a large-scale, centralized repository for health research data.
resultsThe 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.
conclusionsOur 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.