ArticleBMC medical ethics2021
Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good.
Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Advancing data protections for implantable brain-computer interfaces.Communications medicine · 2026Review
- Public perceptions of health data sharing for artificial intelligence research: a qualitative focus group study in the UK.BMJ digital health & AI · 2026Article
- Enabling secure and self determined health data sharing and consent management.NPJ digital medicine · 2025Review
- The European Health Data Space: an opportunity to strengthen citizen rights and engage citizens in health data governance.Frontiers in medicine · 2025Article
- Implications of the genomic revolution for education research and policy.British educational research journal · 2024Article
- Consent as a compositional act - a framework that provides clarity for the retention and use of data.Philosophy, ethics, and humanities in medicine : PEHM · 2024Article
- Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.Journal of medical Internet research · 2023Article
- One Digital Health Intervention for Monitoring Human and Animal Welfare in Smart Cities: Viewpoint and Use Case.JMIR medical informatics · 2023Article
- 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
- Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.Journal of medical Internet research · 2023Review
- Do genomic passports leave us more vulnerable or less vulnerable? Perspectives from an online citizen engagement.Humanities & social sciences communications · 2023Article
- 21st Century Cures Act: ethical recommendations for new patient-facing products.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- What ethical approaches are used by scientists when sharing health data? An interview study.BMC medical ethics · 2022Article
- The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study.Journal of empirical research on human research ethics : JERHREArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer.
methodsThis paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants' discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis.
resultsThe results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants. DISCUSSION: Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.
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.