ArticleEuropean journal of human genetics : EJHG2020
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data.
Article in European journal of human genetics : EJHG, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed, 3 syntheses or guidelines pooled 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
- Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review.Frontiers in genetics · 2020Pooled it
- Black parents' views and understanding of prenatal genetic testing: a cross-sectional survey of attitudes, knowledge and trust in UK healthcare.European journal of human genetics : EJHG · 2026Article
- Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.Irish journal of medical science · 2025Article
- Willingness of the Chinese public to participate in medical research during a pandemic: A cross-sectional study.Medicine · 2025Article
- Genetic exceptionalism and genomic contextualism among Asian Americans: a qualitative study.Journal of community genetics · 2025Article
- 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
- 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
- Perceptions of pharmacogenetic exceptionalism and the implications for clinical management within an electronic health record.Clinical and translational science · 2022Article
- Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.European journal of human genetics : EJHG · 2022Article
- Genetic information, insurance and a pluralistic approach to justice.Journal of medical ethics · 2021Article
- Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Public trust and genomic medicine in Canada and the UK.Wellcome open research · 2021Article
- Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey.PloS one · 2021Article
- Sharing genomic data from clinical testing with researchers: public survey of expectations of clinical genomic data management in Queensland, Australia.BMC medical ethics · 2020Article
- Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?American journal of human genetics · 2020Article
- Physicians' Attitudes and Ethical Obligations to Pharmacogenetic Testing.Journal of multidisciplinary healthcare · 2020Article
Corrections and comments
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Authors and funding
20 authors.
Funding
Abstract
Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held 'exceptionalist' views about genetics (i.e., believed DNA is different or 'special' compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.
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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.