Article: Data Charitable Trusts: Balancing Privacy and Sharing Value in Healthcare Data Governance

Yuxin Zhao (National University of Singapore) recently published, Data Charitable Trusts: Balancing Privacy and Sharing Value in Healthcare Data Governance, 2026. Provided below is an Abstract:

Healthcare data-sharing faces a governance problem as current frameworks struggle to balance privacy protection with research access needs. The gap between data accumulation and utilization constrains public health advancement. Charitable trusts offer a legal framework that achieves a balance between data protection and the needs of research, thereby addressing some limitations of existing data-sharing methods. By conceptualizing data as a bundle of rights, the model can operate within China’s civil law trust framework. This legal framework enables broader participation through specific technical and theoretical models. However, legal tensions arise regarding asset partitioning with replicable data, reconciling trust structures with civil law property concepts, and coordinating with data protection regulations. These challenges can be addressed through targeted reforms. Nevertheless, challenges persist, including weak enforcement mechanisms, overlapping regulatory authority, public distrust, and institutional barriers.