ArticleEuropean journal of human genetics : EJHG2021
Demographic and prosocial intrapersonal characteristics of biobank participants and refusers: the findings of a survey in the Netherlands.
Article in European journal of human genetics : EJHG, 2021. 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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Who cites it
14 citing papers in PubMed.
- When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.Journal of religion and health · 2024Article
- Attitude towards consent-free research use of personal medical data in the general German population.Heliyon · 2024Article
- Establishing a Pregnancy Lyme Disease Biobank.Methods in molecular biology (Clifton, N.J.) · 2024Article
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
- Predicting Participation Willingness in Ecological Momentary Assessment of General Population Health and Behavior: Machine Learning Study.Journal of medical Internet research · 2023Article
- Public's awareness of biobanks and willingness to participate in biobanking: the moderating role of social value orientation.Journal of community genetics · 2023Article
- Is there a "pandemic effect" on individuals' willingness to take genetic tests?European journal of human genetics : EJHG · 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
- COVID-19 Surveillance in the Biobank at the Colorado Center for Personalized Medicine: Observational Study.JMIR public health and surveillance · 2022Observational
- Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.European journal of human genetics : EJHG · 2022Article
- Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables.International journal of environmental research and public health · 2022Article
- Secondary research use of personal medical data: patient attitudes towards data donation.BMC medical ethics · 2021Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes.Journal of empirical research on human research ethics : JERHREArticle
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Research in genetics relies heavily on voluntary contributions of personal data. We aimed to acquire insights into the differences between participants and refusers of participation in a Dutch population-based biobank. Accordingly, we assessed the demographic and prosocial intrapersonal characteristics of respondents who participated (n = 2615) or refused to participate (n = 404) in the Lifelines biobank and databank. Our results indicated that health-related values critically influence participation decisions. The participation threshold for Lifelines was determined by an absence of health-related values and of trust in government. Therefore, considering these factors in communication and recruitment strategies could enhance participation in biomedical research. No indications were found of a stronger general prosociality of participants or their trust in researchers beyond the context of biobanking. This emphasizes the contextual understanding of the decision of participation in biobanking. Our findings may contribute to improving recruitment strategies by incorporating relevant values and/or highlighting prosocial benefits. Moreover, they foreground the need to address trust issues in collaborations between data repositories and commercial companies. Future research should explore how prosocial intrapersonal characteristics drive participation and withdrawal decisions and relate to contextual attributes.
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