ArticleEuropean journal of medical genetics2019
Attitudes of publics who are unwilling to donate DNA data for research.
Article in European journal of medical genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 2 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
45 citing papers in PubMed, 2 syntheses or guidelines 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
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Ethical guidelines for deploying artificial intelligence applications in the pathology field: Lessons learned from a prospective framework in a large tertiary care academic medical center.Journal of pathology informatics · 2026Article
- Genomic Medicine and Individual Autonomy: Reflections on Knowledge Societies and Governmentality.International journal of environmental research and public health · 2026Article
- The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.The American journal of bioethics : AJOB · 2025Article
- Trust and Perceived Trustworthiness in Health-Related Data Sharing Among UK Adults: Cross-Sectional Survey.Journal of medical Internet research · 2025Article
- Perceived understanding and psychosocial outcomes: employees' responses to learning results of workplace genetic testing.Personalized 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
- Analysis of public perceptions on the use of artificial intelligence in genomic medicine.Human genomics · 2024Article
- Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Research biobank participants attitudes towards genetic exceptionalism and health record confidentiality.Journal of community genetics · 2024Article
- Health data sharing attitudes towards primary and secondary use of data: a systematic review.EClinicalMedicine · 2024Article
- Australian public perspectives on genomic data governance: responsibility, regulation, and logistical considerations.European journal of human genetics : EJHG · 2024Article
- Public attitudes toward the use of human induced pluripotent stem cells: insights from an Italian adult population.Frontiers in public health · 2024Article
- The legacy of language: What we say, and what people hear, when we talk about genomics.HGG advances · 2023Article
- Genomics and inclusion of Indigenous peoples in high income countries.Human genetics · 2023Review
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Context matters in genomic data sharing: a qualitative investigation into responses from the Australian public.BMC medical genomics · 2023Article
- Do genomic passports leave us more vulnerable or less vulnerable? Perspectives from an online citizen engagement.Humanities & social sciences communications · 2023Article
- Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.Frontiers in genetics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
Abstract
With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of interest. This can only be successful if DNA and medical data are donated by large numbers of people to 'research', including clinical, non-profit and for-profit research initiatives, in order to be accessed by scientists and clinicians worldwide. The objective of the 'Your DNA, Your Say' global survey is to explore public attitudes, values and opinions towards willingness to donate and concerns regarding the donation of one's personal data for use by others. Using a representative sample of 8967 English-speaking publics from the UK, the USA, Canada and Australia, we explore the characteristics of people who are unwilling (n = 1426) to donate their DNA and medical information, together with an exploration of their reasons. Understanding this perspective is important for making sense of the interaction between science and society. It also helps to focus engagement initiatives on the issues of concern to some publics.
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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.