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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Main Authors: Yifan Peng, Jiyuan Li, Ruipeng Lei
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-08-01
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.
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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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AT ruipenglei fromownershiptocustodianshiprethinkinghumanbiospecimensdatagovernanceinthechinesecontext