[Solidarity : new paradigm for health data spaces?]

Area of Science:

• Public Health
• Health Informatics
• Bioethics

Context:

• The European Health Data Space (EHDS) proposal and Switzerland's DigiSanté project highlight a shift towards solidarity in health data governance.
• Existing legal frameworks for health data sharing are being re-evaluated in light of this emerging principle.
• Increased reliance on solidarity necessitates a deeper examination of its practical implications.

Purpose:

• To analyze the emerging normative paradigm of solidarity in health data sharing.
• To explore the multifaceted implications of increased reliance on solidarity for public and private actors.
• To examine the utilization of health data for research, health surveillance, and commercial profit.

Summary:

• The article investigates health data spaces, focusing on the principle of solidarity as exemplified by the European Health Data Space and Swiss initiatives.
• It analyzes how public and private entities utilize health data for research, surveillance, and profit.
• The study emphasizes the critical need for robust governance frameworks to balance the common good with the risks of exploitation.

Impact:

• Informs the development of ethical and legal frameworks for future health data spaces.
• Provides insights into balancing data utilization for societal benefit with individual privacy and protection.
• Highlights potential risks of repression and exploitation associated with large-scale health data sharing under the solidarity principle.