ArticleEuropean journal of human genetics : EJHG2021
Secondary research use of personal medical data: attitudes from patient and population surveys in The Netherlands and Germany.
Article in European journal of human genetics : EJHG, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 32 papers, 1 of them a synthesis 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
32 citing papers in PubMed, 1 synthesis or guideline pooled it, 60 citations in OpenAlex.
- Pooled it
- Feasibility, comprehension and applicability of broad consent in the emergency department: an exploratory mixed-methods study.Journal of medical ethics · 2026Article
- High Patient Willingness to Grant Broad Consent for Real-World Data Use in Rheumatology-Implications for Real-World Data Platform Governance: Cross-Sectional Study.Journal of medical Internet research · 2026Article
- Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.BMC medical ethics · 2026Article
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Korea's Bio Big Data Project: Importance and Challenges of Governance and Data Utilization.Healthcare informatics research · 2025Article
- Patient data for commercial companies? An ethical framework for sharing patients' data with for-profit companies for research.Journal of medical ethics · 2025Article
- Broad consent in the emergency department: a cross sectional study.Archives of public health = Archives belges de sante publique · 2025Article
- Improving transparency in data access processes: Developing best practice standards and promoting system-wide change through a competitive funding call.International journal of population data science · 2025Article
- Information Mode-Dependent Success Rates of Obtaining German Medical Informatics Initiative-Compliant Broad Consent in the Emergency Department: Single-Center Prospective Observational Study.JMIR medical informatics · 2024Observational
- European health regulations reduce registry-based research.Health research policy and systems · 2024Article
- Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.BMC public health · 2024Article
- [The Medical Informatics Initiative at a glance-establishing a health research data infrastructure in Germany].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Ethical and social implications of public-private partnerships in the context of genomic/big health data collection.European journal of human genetics : EJHG · 2024Article
- Attitude towards consent-free research use of personal medical data in the general German population.Heliyon · 2024Article
- Population-Based Biobanking.Genes · 2024Review
- Citizen Views on an Opt-Out Approach to National Electronic Health Records in Germany: A Small-Scale Qualitative Study.International journal of public health · 2024Article
- Paediatric systemic inflammatory response syndrome (SIRS) and the development of patient-specific therapy: ethical perspectives through experts' opinions.Frontiers in public health · 2024Article
- Data sharing and reuse in clinical research: Are we there yet? A cross-sectional study on progress, challenges and opportunities in LMICs.PLOS global public health · 2024Article
Corrections and comments
- Erratum issued
Authors and funding
7 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Making routine clinical-care-data available for medical research requires adequate consent to legitimize use and exchange. While, public interest in supporting medical research is increasing, individuals often find it difficult to actively enable researchers to access their data. In addition to broad consent, the idea of (consent-free) data donation has been brought into play as another way to legitimize secondary research use of medial data. However, flanking the implementation of broad consent policies or data donation, the attitude of patients, and the general public toward different aspects of these approaches needs to be assessed. We conducted two empirical studies to this end among Dutch patients (n = 7430) and representative German citizens (n = 1006). Wide acceptance of broad consent was observed among Dutch patients (92.3%), corroborating previous findings among German patients (93.0%). Moreover, 28.8% of the Dutch patients generally approved secondary data-use for non-academic research, 42.3% would make their decision dependent upon the type of institution in question. In the German survey addressing the general population, 78.8% approved data donation without explicit consent as an alternative model of legitimization, the majority of those who approved (96.7%) would allow donated data to be used by universities and public research institutions. This willingness to support contrasted sharply with the fact that only 16.6% would allow access to the data by industry. Our findings thus not only add empirical evidence to the debate about broad consent and data donation, but also suggest that widespread public discussion and education about the role of industry in medical research is necessary in that context.
Indexed as
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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.