数据共享的不同含义:隐私层次和道德挑战
Ross Koppel1,2, Richard Schreiber3, Bonnie Kaplan4
1University of Pennsylvania, Phila., PA USA.
Studies in health technology and informatics
|May 17, 2025
概括
分享患者数据对于医疗保健和研究至关重要. 我们创建了数据共享层次结构 (DaSH),以澄清患者数据隐私所涉及的伦理复杂性和风险.
科学领域:
- 医疗信息学 医疗信息学
- 生物伦理学生物伦理学
- 数据科学数据科学数据科学
背景情况:
- 临床数据共享是患者护理,研究,公共卫生倡议和技术创新的组成部分.
- "数据共享"一词往往含糊不清,包括复杂的伦理,法律和社会考虑.
- 现有的框架可能无法充分解决与共享敏感患者信息相关的细微风险.
研究的目的:
- 为了解决围绕临床数据共享的模两可.
- 开发一种结构化的方法来评估患者数据共享的伦理影响.
- 引入一种新的层次结构,阐明患者数据隐私固有的风险和伦理复杂性.
主要方法:
- 开发一个六层层次的层次结构框架.
- 分析与患者数据相关的伦理,法律和社会问题.
- 基于风险和复杂性的数据共享场景的分类.
主要成果:
- 建立了一个六层层次的层次结构,称为DASH (数据共享层次结构).
- 该DASH框架系统地概述了数据共享中的不同级别的风险和伦理考虑.
- 层次结构为了解患者数据隐私的复杂性提供了一个清晰的结构.
结论:
- 数据共享层次结构 (DaSH) 为评估患者数据共享提供了一种标准化的方法.
- DaSH提高了与临床数据相关的伦理和隐私风险的清晰度.
- 该框架支持医疗保健和研究领域的负责任的数据共享实践.
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