In a new statement, the BioMed Alliance urgently calls on policy makers to take action to ensure the European Health Data Space (EHDS) will not severely jeopardise health research. The health research community is extremely concerned about a partial opt-in system for the re-use of data for policy making and research in EHDS, which is currently being discussed by policy makers. Opt-in approaches significantly impinge on the availability of datasets for researchers to gain new insights into human health and understanding of disease, or for developing new diagnostics and treatments for patients. While the Alliance believes the original Commission proposal put sufficient safeguards in place to protect patient privacy, an opt-out approach could be a compromise solution if it is implemented appropriately. The statement also lists a series of key considerations which should be taken into account by decision makers in the Council and the Parliament to preserve life-saving research.

Read the statement here