This manifesto follows on from the warning regarding the potential consequences of implementing the European Health Data Space (EEDS) for research and its infrastructure. It has been drawn up to ensure that the implementation of the EEDS adheres to a number of key principles and is accompanied by safeguards that protect the trust of participants, scientific integrity and the long-term viability of the cohorts, registries, platforms and teams that produce and maintain these data.
This manifesto will be widely distributed and open for signature by researchers, patients, healthcare professionals, and citizens.
This initiative is undertaken on an individual basis by its signatories and does not bind their institutions, organizations, or governing bodies. Each signature represents a personal decision and is binding only on the signatory.
It is available here: https://manifeste-eeds.fr/