ArticleGenetics in medicine : official journal of the American College of Medical Genetics2011
Active choice but not too active: public perspectives on biobank consent models.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 88 papers, 3 of them syntheses 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
88 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings.Journal of empirical research on human research ethics : JERHRE · 2015Pooled it
- Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.American journal of human genetics · 2017Trial
- Interactive multimedia consent for biobanking: a randomized trial.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Trial
- Researchers are building computers that run on brain organoids - but have neglected a major ethical issue.Nature · 2026Article
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- Public attitudes towards consent for the donation of surplus frozen eggs to research.Human reproduction (Oxford, England) · 2026Article
- Public awareness, attitudes, and motivation toward biobanks: a survey of China.BMC medical ethics · 2025Article
- Biobanking, digital health and privacy: the choices of 1410 volunteers and neurological patients regarding limitations on use of data and biological samples, return of results and sharing.BMC medical ethics · 2024Article
- Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.Medical science monitor : international medical journal of experimental and clinical research · 2024Article
- "My Blood, You Know, My Biology Being out There…": Consent and Participant Control of Biological Samples.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Genetic tests as the strongest motivator of cooperation between participants and biobanks-Findings from cross-sectional study.Frontiers in genetics · 2024Article
- Pet owner perspectives, motivators and concerns about veterinary biobanking.Frontiers in veterinary science · 2024Article
- Improving Public Trust in Biobanking: Roundtable Discussions from the 2021 ISBER Annual Meeting.Biopreservation and biobanking · 2023Article
- Get this thing out of my body! Factors determining consent for translational oncology research: a qualitative research.Journal of translational medicine · 2023Article
- Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.International journal for equity in health · 2023Article
- Implementation of a comprehensive fertility biobanking initiative.F&S science · 2022Article
- Pediatric biorepository participation during the COVID-19 pandemic: predictors of enrollment and biospecimen donation.BMC pediatrics · 2022Article
- Trust and Trade-Offs in Sharing Data for Precision Medicine: A National Survey of Singapore.Journal of personalized medicine · 2021Article
28 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
purposeDespite important recent work, US public attitudes toward specific biobank consent models are not well understood. Public opinion data can help shape efforts to develop ethically sound and publicly trusted mechanisms for informing and consenting prospective biobank donors. The purpose of this study was to explore public perspectives toward a range of consent models currently being used or considered for use among comprehensive US biobanks.
methodsThe study used an exploratory mixed-methods design, using focus groups and telephone surveys. Eligible participants were English-speaking residents in the catchment area of a comprehensive biobank being developed at the University of Iowa.
resultsForty-eight participants in seven focus groups and 751 survey participants were recruited. Biobanks were unfamiliar to almost all study participants but were seen as valuable resources. Most focus group (63%) and survey (67%) participants preferred a prospective opt-in over an opt-out consent approach. Broad, research-unspecific consent was preferred over categorical and study-specific consent models for purposes of approving future research use.
conclusionMany individuals may want to make an active and informed choice at the point of being approached for biobank participation but are prepared to consent broadly to future research use and to forego additional choices as a result.
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What OpenQuestion holds
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.