Sacrificing Health Data for the Sake of Research: The Missing Link

Missing Link: Selling out health data in the name of research

The use of citizens’ health data for research purposes has caused controversy in Germany. The Digital Supply Act was passed in 2019 allowing sensitive health data of 73 million people with statutory health insurance to be transmitted to the Central Association of Statutory Health Insurance and Research Data Center without their consent. Critics see this as a “frontal attack” on the basic right of informational self-determination. In 2022, Constanze Kurz and a patient sued the disclosure of their information to the GKV, supported by the Society for Freedom Rights. The Berlin Social Court has raised fundamental questions about the law.

The presiding judge, Michael Kanert, wants to clarify whether the goals can be achieved with limited data in decentralized storage, consent, or the possibility of objection. Dominique Schröder from the University of Erlangen-Nuremberg assumes this is possible. Kurz’s lawyer, Matthias Bäcker, points out that there is no adequate legal basis for processing the data in the FDZ. The data transfer has had setbacks, causing questions about cybersecurity. The German Network for Health Services Research believes decentralized data is not practical and would have significant negative impacts on medical-scientific research and patients.

The GKV umbrella association has transmitted all health data from 2019 but with delays for 2020 and 2021. There has been limited interest in the data. The expansion of the electronic patient file and the Digital Supply Act may increase interest in the FDZ. The file has particular data-mining potential, according to the TAB researchers.

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