ArticleJournal of medical ethics2020
How should we think about clinical data ownership?
Article in Journal of medical ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled it.
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Who cites it
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Intraoperative application of mixed and augmented reality for digital surgery: a systematic review of ethical issues.Frontiers in surgery · 2024Pooled it
- Towards best practice recommendations: Perspectives from Australian GPs to inform the use of general practice data for research - A modified Delphi study.The European journal of general practice · 2026Article
- Chronotherapy in Hematological Malignancies: Evaluating the Rationale and Evidence.Pharmacology research & perspectives · 2026Review
- Towards better Diabetes Data Rights: Data protection, data 'ownership', and developing a patient charter.Diabetic medicine : a journal of the British Diabetic Association · 2026Article
- Beyond the dataset: integrating public voices in data science.Research involvement and engagement · 2026Article
- Health data sovereignty: pinpointing conceptual ambiguities.Frontiers in digital health · 2026Article
- An examination of data management in digital health processes from a societal perspective.BMC health services research · 2025Article
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Patient data for commercial companies? An ethical framework for sharing patients' data with for-profit companies for research.Journal of medical ethics · 2025Article
- Advancing the diagnosis of major depressive disorder: Integrating neuroimaging and machine learning.World journal of psychiatry · 2025Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- Synthetic Health Data: Real Ethical Promise and Peril.The Hastings Center report · 2024Article
- Balancing the safeguarding of privacy and data sharing: perceptions of genomic professionals on patient genomic data ownership in Australia.European journal of human genetics : EJHG · 2024Article
- Behind the mask: a critical perspective on the ethical, moral, and legal implications of AI in ophthalmology.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2024Review
- Evaluating the understanding of the ethical and moral challenges of Big Data and AI among Jordanian medical students, physicians in training, and senior practitioners: a cross-sectional study.BMC medical ethics · 2024Article
- Interoperability of health data using FHIR Mapping Language: transforming HL7 CDA to FHIR with reusable visual components.Frontiers in digital health · 2024Article
- Review
- Non-fungible token integration in neurosurgery: a technical review.Neurosurgical review · 2023Review
- Using the Non-Adoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) Framework to Identify Barriers and Facilitators for the Implementation of Digital Twins in Cardiovascular Medicine.Sensors (Basel, Switzerland) · 2023Article
- Data sharing in the context of community-engaged research partnerships.Social science & medicine (1982) · 2023Article
Corrections and comments
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Authors and funding
1 author.
Funding
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Abstract
The concept of 'ownership' is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from 'ownership' to 'private property' and conclude 'the data belongs to the patient'. I will argue here that private property is only one type of relevant relationship between people, communities and data. There are several reasons to doubt that conceptualising data as private property presents a compelling response to concerns about clinical data ownership. In particular I argue that clinical data are co-constructed, so a property account would fail to confer exclusive rights to the patient. A non-property account of ownership acknowledges that the data are 'about the patient', and therefore the patient has relevant interests, without jumping to the conclusion that the data 'belongs to the patient'. On this broader account of ownership, the relevant harm is the severing of the connection between the patient and their data, and the solution is to re-engage and re-connect patients to the data research enterprise.
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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.