Trial reportEuropean journal of human genetics : EJHG2019
Patient views on research use of clinical data without consent: Legal, but also acceptable?
Trial report in European journal of human genetics : EJHG, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 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
32 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Specific measures for data-intensive health research without consent: a systematic review of soft law instruments and academic literature.European journal of human genetics : EJHG · 2024Pooled it
- Secondary use of health care data and left-over biosamples within the 'Medical Informatics Initiative' (MII): a quasi-randomized controlled evaluation of patient perceptions and preferences regarding the consent process.BMC medical informatics and decision making · 2022Trial
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Critical consideration towards broad consent by patient experts: results of a semi-structured interview study on the secondary use of medical data.BMC medical ethics · 2025Article
- Broad Consent in Healthcare Research: What Is Efficient, What Is Right?Journal of magnetic resonance imaging : JMRI · 2025Article
- Population-Based Biobanking.Genes · 2024Review
- Data altruism and the "consent" question: a study into the "consent" models used under the GDPR and how the data altruism mechanism can act as a potential solution for the research community in the reuse of health data.Frontiers in medicine · 2024Review
- Commitments for Ethically Responsible Sourcing, Use, and Reuse of Patient Data in the Digital Age: Cocreation Process.Journal of medical Internet research · 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
- Overcoming ethical and legal obstacles to data linkage in health research: stakeholder perspectives.International journal of population data science · 2023Article
- Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.Frontiers in pharmacology · 2023Article
- Perspectives on Data Sharing in Persons With Spinal Cord Injury.Neurotrauma reports · 2023Article
- The human genetic epidemiology of COVID-19.Nature reviews. Genetics · 2022Review
- Patients' Willingness to Provide Their Clinical Data for Research Purposes and Acceptance of Different Consent Models: Findings From a Representative Survey of Patients With Cancer.Journal of medical Internet research · 2022Article
- Attitudes of Patients With Chronic Heart Failure Toward Digital Device Data for Self-documentation and Research in Germany: Cross-sectional Survey Study.JMIR cardio · 2022Article
- Practices and Attitudes of Bavarian Stakeholders Regarding the Secondary Use of Health Data for Research Purposes During the COVID-19 Pandemic: Qualitative Interview Study.Journal of medical Internet research · 2022Article
- Motives for withdrawal of participation in biobanking and participants' willingness to allow linkages of their data.European journal of human genetics : EJHG · 2022Article
- Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables.International journal of environmental research and public health · 2022Article
- Ethical Considerations in Clinical Trials for Disorders of Consciousness.Brain sciences · 2022Article
- Challenges and recommendations for high quality research using electronic health records.Frontiers in digital health · 2022Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The research exemption implemented in the new EU General Data Protection Regulation (EU-GDPR) gives member states leeway in determining whether patient consent is required for secondary data use in medical research. However, even though broad consent has become common in data-rich medical research in many EU countries, giving up consent altogether is likely to be controversial. The aim of this study was to examine whether abolishing consent for secondary data use would be acceptable to patients. A questionnaire study was conducted among 700 outpatients of a northern German university hospital to assess their attitude towards use of clinical data for scientific research without consent. There was both strong willingness to give broad consent for secondary data use (468 of 503 responders, 93.0%) and strong approval of abolishing patient consent (n = 381, 75.7%) among study participants. The willingness to give consent was moderately associated with approval of the respective stipulations by the EU-GDPR. In research settings where broad consent is widely accepted (e.g. university hospitals), abolishing consent for secondary research use of clinical data will likely be acceptable to a large majority of patients.
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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.