ArticleHuman genetics2019
Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.
Article in Human genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 58 papers, 6 of them syntheses 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
58 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Pooled it
- Opportunities for a national genomic data governance framework in Australia: a systematic review.BMC medical ethics · 2025Pooled 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
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- Ethical Principles, Constraints and Opportunities in Clinical Proteomics.Molecular & cellular proteomics : MCP · 2021Pooled it
- Attitudes of Longitudinal Study Participants and Members of the Public Towards Data Sharing for Secondary Research: A Survey Based Approach.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries.Journal of community genetics · 2026Article
- Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.European journal of human genetics : EJHG · 2026Article
- From Biobank to "Bio-Think-Tank": Functional Evolution of UK Biobank in Public Health Policy Making.Public health reviews · 2026Review
- Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.Irish journal of medical science · 2025Article
- Trust and Perceived Trustworthiness in Health-Related Data Sharing Among UK Adults: Cross-Sectional Survey.Journal of medical Internet research · 2025Article
- Breadth versus depth: balancing variables, sample size, and quality in Chinese cohort studies.BMJ (Clinical research ed.) · 2025Article
- Review
- How participation in deliberative engagement affects awareness of, and attitudes towards, genomics research and data sharing: evidence from rural Ghana.BMC medical ethics · 2025Article
- Public perceptions and engagement in mHealth: a European survey on attitudes toward health apps use and data sharing.European journal of public health · 2025Article
- 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
- Effect of Trust in Science on Parental Reactions to Messaging about Children's Epigenetics-Related Obesity Risk.Public health genomics · 2025Article
- Emerging Ethical Challenges in Manufacturing of Cell-Based Medicines.Advances in experimental medicine and biology · 2025Review
- Health data sharing in Germany: individual preconditions, trust and motives.Frontiers in public health · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
18 authors.
Funding
Abstract
Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants.
Indexed as
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.