伦理和公平的数字健康研究:确保种族化社区在数据治理中的自决权
Mozharul Islam1,2, Arafaat A Valiani3,4, Ranjan Datta5
1Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
概括
数字健康研究必须优先考虑种族化社区的伦理数据实践,确保他们的自决权和对健康数据的控制. 这种方法促进了公平,并尊重社区定义的健康优先事项.
科学领域:
- 数字健康伦理学 数字健康伦理学
- 健康 公平 研究 健康 公平 研究
- 数据治理数据治理
背景情况:
- 越来越需要道德和公平的数字健康研究.
- 保护种族化社区的权利和利益至关重要.
- 现有研究强调了数字卫生接入和结果的差异.
研究的目的:
- 倡导促进种族化社区数据自决的做法.
- 鼓励在数字健康中公平地收集,管理和使用数据.
- 整合土著数据主权 (IDS) 和非殖民化的原则.
主要方法:
- 研究人员和种族化社区之间的合作伙伴关系.
- 将土著数据主权 (IDS) 原则适应于健康研究.
- 应用公平,多样性,包容性,可访问性和非殖民化 (EDIAD) 原则.
主要成果:
- 共同定义的数据共享和治理模型至关重要.
- 从数字健康研究中生成的数据的共同管理.
- 通过道德数据管理,赋予种族化社区权力.
结论:
- 数字健康研究必须以种族化社区的权利和优先事项为中心.
- 数据自决是减少健康和技术差距的关键.
- 采用IDS和EDIAD原则可以促进健康公平.
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