The planned European Health Data Space (EHDS), which aims to provide better treatment options for patients through improved research, has been welcomed by politicians and business. However, ethical concerns still need to be addressed for the implementation of EHDS to be successful and low-risk. In an interview with heise online, ethicist Jessica Heesen highlighted the dangers and potential solutions to these obstacles.
One concern raised by Heesen is whether health insurance companies will be allowed to adjust their tariffs based on data received from patients. This approach would breach the principle of solidarity in health insurance, she argued. However, patients are increasingly willing to provide their own data to insurance companies for nutritional advice, raising questions about the ethical use of this information.
Heesen also pointed out that while most discussion about the EHDS has focused on the regulated health sector and research, the biggest advances are being made in the private sector. The platform economy has its own business interests, she said, and digital companies can do research with the vast amounts of healthcare data they collect. However, public health systems and university hospitals still have to seek permission to access this data, resulting in an imbalance of power.
To address these issues, Heesen called for a clearer separation between commercial and public interest research purposes, and for greater regulation to prevent the misuse of health data for commercial gain. Overall, she emphasized the importance of considering the ethical implications of EHDS implementation to ensure that patients’ rights and interests are protected.
