29 Jun 2021
The Guild is concerned about access to health data for medical research
The Guild of European Research-intensive Universities has voiced its concerns regarding the existing regulatory frameworks on health data which, it claims, are putting medical research in Europe under a threat. Access to a large volume and diverse range of data is crucial for the improvement of diagnostic techniques and treatments, and for preventive and health strategies, the association states, while at present the General Data Protection Regulation (GDPR) and the interpretation of some of its provisions impose limitations on the sharing and reuse of health data for research purposes.
Last month, the European Commission launched an open public consultation on its proposal for a regulation on the European Health Data Space (EHDS), a common data space which is planned to be operational by the end of 2021. The Guild endorses the specific objective of the EHDS to facilitate health data sharing and reuse for research purposes, while calling on the Commission to pay attention to the following points when shaping the EHDS:
- Clarify GDPR provisions, especially those introducing exemptions for the use and processing of personal data for the purpose of (medical) research.
- Ensure that the degree of data protection required is commensurate with the actual sensitivity of the data.
- Revise the rules relative to patients’ consent to data processing and transfer.
- Consider data federation aspects allowing for federation to different levels: national nodes, individual institutes, and individual citizens.
- Support the development of privacy enhancing technologies.
- Develop an approach based on risk-benefit/value assessment.
- Increase citizens’ trust by raising their awareness of the potential benefits of data sharing and being transparent on the reuse of health data.
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