Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate.
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Summary
A substantive definition of research-absent in theGDPR is proposed-which can warrant its special status in the GDPR and which could be subsumed under informational self-determination versus solidarity and the deeper meaning of autonomy.
- Type
- article
- Published
- 2018-11-01
- Cited by
- 64
- References
- 82
- Access
- Open access
- OpenAlex
- https://openalex.org/W2896838885
- Semantic Scholar
- https://api.semanticscholar.org/CorpusID:53020201
Keywords
General Data Protection Regulation, Autonomy, Health care, Observational study, Ambiguity
References
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- JOINT CONTROLLER AGREEMENT UNDER GDPR
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- Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence
- DNA methylation data by sequencing: experimental approaches and recommendations for tools and pipelines for data analysis
- Responsible data sharing in a big data-driven translational research platform: lessons learned
- Data protection and ethics requirements for multisite research with health data: a comparative examination of legislative governance frameworks and the role of data protection technologies
- The Effect of GDPR on Secondary Use of Data Concerning Health in Research: Latvian Case in the European Context
- Scaling Up the Surveillance of Childhood Cancer: A Global Roadmap
- Informed consent procedures in patients with an acute inability to provide informed consent: Policy and practice in the CENTER-TBI study.
- Development of a semi-structured, multifaceted, computer-aided questionnaire for outbreak investigation: e-Outbreak Platform
- Population health monitoring: an essential public health field in motion
- Prognostic factors analysis for oral cavity cancer survival in the Netherlands and Taiwan using a privacy-preserving federated infrastructure
- Anonymised Data and the Rule of Law
- Raising standards for global data-sharing—Response
- Occupational Exposure to Extremely Low‐Frequency Magnetic Fields and Risk of Amyotrophic Lateral Sclerosis: Results of a Feasibility Study for a Pooled Analysis of Original Data
- Big Tech Platforms in Health Research: Re-purposing Big Data Governance in Light of the GDPR’s Research Exemption
- VANTAGE6: an open source priVAcy preserviNg federaTed leArninG infrastructurE for Secure Insight eXchange
- Up-to-the-Minute Privacy Policies via Gossips in Participatory Epidemiological Studies
- Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries
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