ArticleEuropean journal of human genetics : EJHG2018
Effect of deliberation on the public's attitudes toward consent policies for biobank research.
Article in European journal of human genetics : EJHG, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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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.
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Who cites it
8 citing papers in PubMed.
- How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana.BMC medical ethics · 2025Article
- Korea's Bio Big Data Project: Importance and Challenges of Governance and Data Utilization.Healthcare informatics research · 2025Article
- The CHESS Protocol: A Mixed-Methods Evaluation of an HPV Screening Intervention for Women Living With HIV in Nigeria.International journal of public health · 2025Article
- US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2023Article
- What can data trusts for health research learn from participatory governance in biobanks?Journal of medical ethics · 2022Article
- Towards an appropriate African framework for public engagement with human genome editing: a call to synergistic action.Wellcome open research · 2022Article
- Eliciting patient views on the allocation of limited healthcare resources: a deliberation on hepatitis C treatment in the Veterans Health Administration.BMC health services research · 2020Article
- Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2019Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
In this study, we evaluate the effect of education and deliberation on the willingness of members of the public to donate tissue to biobank research and on their attitudes regarding various biobank consent policies. Participants were randomly assigned to a democratic deliberation (DD) group, an education group that received only written materials, and a control group. Participants completed a survey before the deliberation and two surveys post-deliberation: one on (or just after) the deliberation day, and one 4 weeks later. Subjects were asked to rate 5 biobank consent policies as acceptable (or not) and to identify the best and worst policies. Analyses compared acceptability of different policy options and changes in attitudes across the three groups. After deliberation, subjects in the DD group were less likely to find broad consent (defined here as consent for the use of donations in an unspecified range of future research studies, subject to content and process restrictions) and study-by-study consent acceptable. The DD group was also significantly less likely to endorse broad consent as the best policy (OR = 0.34), and more likely to prefer alternative consent options. These results raise ethical challenges to the current widespread reliance on broad consent in biobank research, but do not support study-by-study consent.
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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.