ORIGINAL RESEARCH article
Front. Genet.
Sec. ELSI in Science and Genetics
Volume 16 - 2025 | doi: 10.3389/fgene.2025.1621739
This article is part of the Research TopicInsights in ELSI in Science and Genetics 2024-2025View all 7 articles
From Ownership to Custodianship: Rethinking Human Biospecimens Data Governance in the Chinese Context Authors and Affiliations
Provisionally accepted
- 1Huazhong University of Science and Technology, Wuhan, China
- 2University of Electronic Science and Technology, chengdu, China
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As biomedical research shifts from being experiment-driven to data-driven, the importance of human biomedical data (HBD) has been increasingly highlighted.In this context, traditional data governance models face significant challenges. This paper, based on exploring the ontological and moral status of HBD, analyzes the limitations of the current ownership model and proposes a data governance framework centered on custodianship. The paper then highlights how custodianship aligns with Chinese culture, law, and the concept of "Responsible Research and Innovation (RRI)" through an analysis of current policies in the European Union (EU), the United States (US), and China, while also discussing the application of data trust as a specific implementation mechanism. Finally, the paper points out that transitioning to a custodianship model can more effectively balance privacy protection with innovation, data security with technological development, and data sharing with data protection, offering a new perspective and approach for China's HBD governance and providing a Chinese solution for global HBD governance, thereby promoting the healthy development of life sciences and technology.
Keywords: human biospecimens data, Ontological Status, Moral status, Custodianship, data trust
Received: 01 May 2025; Accepted: 27 Jul 2025.
Copyright: © 2025 Peng, LI and Lei. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Ruipeng Lei, University of Electronic Science and Technology, chengdu, China
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