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从所有权到托管权:在中国的背景下重新思考人类生物标本数据治理

Yifan Peng¹, Jiyuan Li¹, Ruipeng Lei²

¹School of Philosophy, Huazhong University of Science and Technology, Wuhan, China.

Frontiers in genetics

|August 25, 2025

概括

生物医学研究正在变得数据驱动,需要对人类生物医学数据 (HBD) 进行新的治理. 这项研究提出了一个监管框架,与文化价值观保持一致,并促进全球数据治理的负责任创新.

科学领域:

生物医学数据治理
数据伦理学
负责的研究和创新 (RRI)

背景情况:

转向数据驱动的生物医学研究增加了人类生物医学数据 (HBD) 的重要性.
传统的数据治理模式在这个新时代难以应对HBD的复杂性.
对于HBD而言,现有的所有权模式带来了重大挑战.

研究的目的:

探索HBD的本体和道德地位.
分析当前HBD所有权模式的局限性.
提出一个新的数据治理框架,以监管为中心.

主要方法:

对HBD的本体和道德地位的分析.
对欧盟,美国和中国的HBD治理进行比较的政策分析.
探索数据信任作为托管的实施机制.

主要成果:

托管制度为HBD的治理提供了一个可行的所有权模式.
托管模式符合中国文化,法律和RRI原则.
数据信托可以作为实施托管的实际机制.

结论:

转向HBD治理的托管模式可以更好地平衡隐私与创新以及安全与发展.
这一框架为中国的HBD治理提供了一种新的方法,也是中国应对全球挑战的潜在解决方案.
通过有效的数据管理来促进生命科学和技术的健康发展.

关键词:

托管权数据信任人类生物样本数据在道德上的地位存在的地位

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