Patient views on research use of clinical data without consent: Legal, but also acceptable?
Open accessAbstract
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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Such fixed identifiers in EHR are the best information sources for criminals to get easy access to the patient's bank accounts for getting loans or to capture their passports and other important documents.
“Such identifiers in EHR are the best information sources for the criminals to get easy access to the patient's bank accounts for getting loans or to capture their passports and other important documents (property, insurance etc.) [93].”
From Secondary Use of Electronic Health Record: Opportunities and Challenges (2020) · cites this paper as [93]
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Secondary Use of Electronic Health Record: Opportunities and Challenges
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- Authors
- Richter, G., Borzikowsky, C., Lieb, W., Schreiber, S., Krawczak, M., & Buyx, A.
- Affiliations
- Christian-Albrechts-Universität zu Kiel (DE)
- University Hospital Schleswig-Holstein (DE)
- Technical University of Munich (DE)
- Corresponding author
- Richter, Gesine
- ORCID
- Venue
- European Journal of Human Genetics
- Published
- 2019-01-25
- Volume
- 27
- Issue
- 6
- Pages
- 841-847
- ISSN
- 1018-4813 (ISSN-L)
- 1476-5438
- PMC
- PMC6777530
- OpenAlex
- W2912178335
- Cited by
- 74
- References
- 32
- Citations by year
- 2026: 4 · 2025: 7 · 2024: 8 · 2023: 9 · 2022: 16 · 2021: 17 · 2020: 9 · 2019: 4
- FWCI
- 10.59
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- European Journal of Human Genetics (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- mediaTUM (Technical University of Munich) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Keywords
- broad consent, data reuse, patient consent, General Data Protection Regulation, research exemption, patient attitudes, data protection law, medical research ethics
- MeSH terms
- Adult, Attitude, European Union, Female, Humans, Informed Consent, Male, Surveys and Questionnaires, Biomedical Research
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