Vorschlag einer modernen Dateninfrastruktur für die medizinische Forschung in Deutschland

GMS Medizinische Informatik, Biometrie und Epidemiologie

Krawczak, Michael¹  Weichert, Thilo² 

[1] Institut für Medizinische Informatik und Statistik, Christian-Albrechts-Universität, Kiel, Deutschland;Netzwerk Datenschutzexpertise, Kiel, Deutschland;

关键词: privacy protection;    dysregulation;    medical research;    transparency;    data sharing;   

DOI  :  10.3205/mibe000197

来源: DOAJ

【 摘 要 】

At the particular detriment of patient-based medical research, commencement of the EU General Data Protection Regulation in May 2018 has not yet led to a simplification of the federal regulatory framework in Germany. Instead, the many convoluted, impractical and sometimes contradictory rules persisted in the field. Not least in the interest of Germany as a science location, this unfortunate situation calls for immediate remedial action, preferably by the establishment of a data infrastructure that meets the demands of privacy protection and medical research in equal measure. One meaningful step in this direction would be the conclusion of a Federal State Treaty (“Bund-Länder Staatsvertrag”) to unify the legal conditions for the use of personal data in medical research. In the course of this reorganisation, it would also be most reasonable to upgrade any existing or newly established use and access committees managing personalized medical data so as to take on a function as official registration and authorization points. These institutions could form the core of a modern data infrastructure that not only provides more legal certainty to the researchers themselves but at the same time allows for more transparency towards patients, probands and the interested public.

【 授权许可】

Unknown