Several organizations want the EU to reshape the European Health Data Space (EDHS) proposal to give citizens the choice not to share their medical data. In initial proposals of the EHDS, citizens are powerless and their data gets shared for commercial development by definition.
The European Health Data Space (EHDS) is a proposal of the European Commission. The system should simplify the sharing of health data for providing healthcare but also for use in research. The idea is to share medical data in a European format that all EU member states understand.
Research and development
Under the secondary use of data, data from the EHDS is allowed to be used for research and development. This can serve to train AI and provide an AI product or service.
In primary use, the data is accessed by healthcare providers for the treatment of a patient.
GDPR breach
The EHDS proposal, according to several organizations and unions representing the medical industry, lacks only one crucial element: an opt-out. This would cause citizens to lose all control over their medical records, whereas this control was the foundation of the EHDS. “The EHDS claims to give individuals more control over their private data, but without a right to opt-out in all member states, it does the exact opposite: it deprives them of that control,” the organizations criticize the EHDS.
This would go against the GDPR, which makes it obligatory to ask for consent for the processing of medical information. This rule has some exceptions, but commercial use for product development requires consent. EU residents should, therefore, be given an opt-out from sharing medical data for secondary use when the data cannot be anonymized.
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