Die Nutzung von Gesundheitsdaten zur Forschung und Produktinnovation verspricht ein neues Zeitalter des medizinischen Fortschritts und der personalisierten Behandlung. Wie gelingt die Datennutzung für gewünschte Zwecke, zugleich aber auch der Datenschutz für unerwünschte Verwendungen?
On the one hand, there are hopes of groundbreaking medical breakthroughs and economic opportunities. On the other side is the right to informational self-determination, which emphasizes the privacy and protection of individuals’ personal data. Between these two poles, there is an intense debate about the right balance between progress and privacy.
With the General Data Protection Regulation (GDPR), which came into force in 2018, the European Union has set the highest international legal standard for the protection of natural persons when handling their data.
Even though the GDPR has been introduced equally in every EU member state, it has historically been interpreted and applied most strictly in Germany. A GDPR-compliant use of health data in Germany could therefore rightly be seen as a particular challenge, which, if successful, would also serve as a global role model.
This article takes a critical look at the challenges and debates surrounding the use of health data against the backdrop of the German approach to the GDPR. Central trade-offs are highlighted in two opposing poles for easier classification: the tensions between privacy vs. research, research vs. marketing, pseudonymization vs. anonymization, opt-in vs. opt-out, data provision vs. data use, as well as government IT projects vs. market-based solutions.
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The authors
Sassan Sangsari studied medicine and philosophy and is a medtech entrepreneur. Through his work for ARIC, he is deepening his understanding of artificial intelligence in medicine.
Dr. Natalie Rotermund holds a doctorate in neuroscience and has many years of experience in science; as a scientific consultant at ARIC, she is responsible for the main topics of quantum technologies and AI as well as medicine and life sciences.
The authors are available for articles, interviews, podcasts, etc.
