From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context
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...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2025-08-01
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| Series: | Frontiers in Genetics |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fgene.2025.1621739/full |
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| author | Yifan Peng Jiyuan Li Ruipeng Lei |
| author_facet | Yifan Peng Jiyuan Li Ruipeng Lei |
| author_sort | Yifan Peng |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-7de4cee1c08f4f93a269bc1238b973ad |
| institution | Kabale University |
| issn | 1664-8021 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Genetics |
| spelling | doaj-art-7de4cee1c08f4f93a269bc1238b973ad2025-08-20T03:40:46ZengFrontiers Media S.A.Frontiers in Genetics1664-80212025-08-011610.3389/fgene.2025.16217391621739From ownership to custodianship: rethinking human biospecimens data governance in the Chinese contextYifan Peng0Jiyuan Li1Ruipeng Lei2School of Philosophy, Huazhong University of Science and Technology, Wuhan, ChinaSchool of Philosophy, Huazhong University of Science and Technology, Wuhan, ChinaSchool of Marxism, Center for Ethics and Governance of Science and Technology, University of Electronic Science and Technology of China, Chengdu, ChinaAs 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.https://www.frontiersin.org/articles/10.3389/fgene.2025.1621739/fullhuman biospecimens dataontological statusmoral statuscustodianshipdata trust |
| spellingShingle | Yifan Peng Jiyuan Li Ruipeng Lei From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context Frontiers in Genetics human biospecimens data ontological status moral status custodianship data trust |
| title | From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context |
| title_full | From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context |
| title_fullStr | From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context |
| title_full_unstemmed | From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context |
| title_short | From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context |
| title_sort | from ownership to custodianship rethinking human biospecimens data governance in the chinese context |
| topic | human biospecimens data ontological status moral status custodianship data trust |
| url | https://www.frontiersin.org/articles/10.3389/fgene.2025.1621739/full |
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