数据访问治理:一个概念框架
1School of Law, University of KwaZulu-Natal, Mazisi Kunene Road, Glenwood, Durban, South Africa. ThaldarD@ukzn.ac.za.
Human genomics
|December 5, 2025
概括
基因组数据共享面临着法律和伦理方面的挑战. 七维数据访问框架 (7D-DVF) 提供了一种结构化的方法来管理数据访问,平衡隐私,实用性和合规性,以确保安全的全球研究.
科学领域:
- 基因组学和生物信息学
- 数据治理和隐私隐私问题
- 研究中的法律和道德框架
背景情况:
- 全球基因组研究的扩张面临着数据共享的越来越多的法律和道德障碍.
- 传统的数据共享模式受到数据本地化法律和隐私问题的挑战.
- 数据访问,即在没有数据传输的情况下进行本地分析,是一个有希望的,但开发不足的替代方案.
研究的目的:
- 介绍七维数据访问框架 (7D-DVF) 作为基因组数据访问的结构化工具.
- 提供设计,评估和规范数据访问系统的方法.
- 促进安全,合法和合规的基因组数据共享实践.
主要方法:
- 根据全球基因组学和健康联盟 (GA4GH) 的数据共享词典开发了7D-DVF.
- 分解访问数据到七个可调节的维度:研究员自主性,数据位置,数据可见性,共享数据的性质,输出治理,信任和控制模型以及可审计/可追溯性.
- 用检查清单和现实场景作为实际实施指南.
主要成果:
- 7D-DVF提供了一个结构化的方法来管理基因组学中的数据访问系统.
- 每个维度都充当了一种治理杆,用于比例,情境敏感的配置.
- 该框架支持平衡隐私,数据实用性和法律合规性.
- 在机构数据控制,土著数据主权和联合人工智能培训方面的应用.
结论:
- 7D-DVF将基因组数据治理从反应性合规转变为主动的,基于设计的管理.
- 让利益相关者能够实现安全,合法和准备好未来的数据共享.
- 在基因组数据共享中,为导航复杂的法律和伦理场景提供了一个实用的解决方案.
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