Medizinregistergesetz: „Ein lebenslanges, unverhältnismäßiges Risiko“
TL;DR
The German government draft for the Medical Registers Act aims to make roughly 350 medical registries more usable and create a new Center for Medical Registers to check data protection and data quality. In the Bundestag health committee hearing, experts, associations and privacy advocates criticized weak transparency, limited opt-out rights and potential conflicts with GDPR and constitutional rights.
Nauti's Take
The draft reads like familiar health-sector digital policy: maximize data access first, then treat privacy architecture as cleanup work. Research does need better registries, but trust will not come from a new center with four staff and vague information duties.
An independent trust office is not a luxury; it is the minimum condition if sensitive data is supposed to move across systems for decades.
Briefingshow
Medical registries can genuinely improve research, but health data remains sensitive for life: diagnoses, treatments and rare conditions are often hard to anonymize in practice. If the state allows storage for up to 100 years and cross-registry linking, patient control must work in reality, not just exist as legal wording.
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