ArticleJournal of personalized medicine2014
Community engagement for big epidemiology: deliberative democracy as a tool.
Article in Journal of personalized medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
32 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
- Understanding Hispanic and Latino Perceptions on Ancestry-Targeted Screening for Hereditary Breast and Ovarian Cancer Syndrome via Democratic Deliberation.Journal of immigrant and minority health · 2026Article
- European Code Against Cancer, 5th edition - outdoor and indoor air pollution and cancer.Molecular oncology · 2026Review
- The Effectiveness of Adaptations for Online Remote Public Deliberation Across Three Continents: Mixed Methods Study.Journal of participatory medicine · 2025Article
- How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana.BMC medical ethics · 2025Article
- Bridging community-engaged research and implementation science methods to advance public health practice.Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2025Review
- Towards a trusted genomics repository: Identifying commercialisation fears and preferred forms of governance across segments of the community.Public understanding of science (Bristol, England) · 2025Article
- Quality framework for remote antenatal care: qualitative study with women, healthcare professionals and system-level stakeholders.BMJ quality & safety · 2024Article
- Decolonizing Epidemiological Research: A Critical Perspective.Avicenna journal of medicine · 2023Review
- Wrestling with Public Input on an Ethical Analysis of Scientific Research.The Hastings Center report · 2023Article
- Article
- "Community engagement via restorative justice to build equity-oriented crisis standards of care".Journal of the National Medical Association · 2022Article
- Dynamic consent and personalised medicine.The Medical journal of Australia · 2022Article
- What can data trusts for health research learn from participatory governance in biobanks?Journal of medical ethics · 2022Article
- MindKind: A mixed-methods protocol for the feasibility of global digital mental health studies in young people.Wellcome open research · 2021Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Developing and evaluating a model of public involvement and engagement embedded in a national longitudinal study: HealthWise Wales.International journal of population data science · 2020Article
- Partnerships, Processes, and Outcomes: A Health Equity-Focused Scoping Meta-Review of Community-Engaged Scholarship.Annual review of public health · 2020Article
- Australia: regulating genomic data sharing to promote public trust.Human genetics · 2018Review
- Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.The American journal of bioethics : AJOB · 2018Article
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
No grant is acknowledged in the PubMed record.
Abstract
Public trust is critical in any project requiring significant public support, both in monetary terms and to encourage participation. The research community has widely recognized the centrality of public trust, garnered through community consultation, to the success of large-scale epidemiology. This paper examines the potential utility of the deliberative democracy methodology within the public health research setting. A deliberative democracy event was undertaken in Tasmania, Australia, as part of a wider program of community consultation regarding the potential development of a Tasmanian Biobank. Twenty-five Tasmanians of diverse backgrounds participated in two weekends of deliberation; involving elements of information gathering; discussion; identification of issues and formation of group resolutions. Participants demonstrated strong support for a Tasmanian Biobank and their deliberations resulted in specific proposals in relation to consent; privacy; return of results; governance; funding; and, commercialization and benefit sharing. They exhibited a high degree of satisfaction with the event, and confidence in the outcomes. Deliberative democracy methodology is a useful tool for community engagement that addresses some of the limitations of traditional consultation methods.
Identifiers
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.