The BioMed Alliance, representing 34 European medical and research societies, has submitted feedback to the European Data Protection Board (EDPB) on the draft Guidelines 1/2026 on the processing of personal data for scientific research purposes. The General Data Protection Regulation (GDPR), which has applied since 2018, provides the legal framework for how personal data can be used and shared across the EU, including for health research. The EDPB guidelines aim to further clarify how these rules apply in the context of scientific research.
While we welcome the EDPB’s efforts to improve legal clarity under the GDPR, we highlight that its interpretation and implementation for health research remains fragmented across Member States, cretating uncertainty. This often results in risk-averse approaches that can restrict data sharing, even where it is permitted under EU law and beneficial for patients and research.
Overall, we call for clearer, more practical, and more consistent guidance to support high-quality health research across Europe and reduce the legal uncertainty that currently hinders data sharing and innovation. The full feedback document is available below.
