相互竞争的利益:数字健康和土著数据主权
Ashley Cordes1, Marieke Bak2,3, Mataroria Lyndon4
1Environmental Studies Program and Department of Data Science, University of Oregon, Eugene, OR, USA.
NPJ digital medicine
|July 4, 2024
概括
数字健康倡议必须尊重土著的数据主权. 参与土著权利和利益对于全球土著社区的道德和有效的健康数据实践至关重要.
科学领域:
- 数字健康数字健康
- 土著研究土著研究.
- 公共卫生数据伦理 公共卫生数据伦理
背景情况:
- 数字健康中的开放健康数据倡议提供了好处,但与土著数据主权产生了紧张关系.
- 全球各地的土著人民正在宣称对健康数据的控制权是自决的基本方面.
- 数字健康可以改善土著社区获得服务和健康成果的机会.
研究的目的:
- 检查土著社区数字健康数据管理的伦理考虑和实际挑战.
- 探索数字健康如何与土著数据主权原则保持一致.
- 建议改善数据采集,管理,分析和在土著健康环境中的整合.
主要方法:
- 数字健康数据实践的文献审查和伦理分析.
- 讨论与土著健康数据相关的案例研究和政策影响.
- 探索协作数据治理的框架.
主要成果:
- 在开放的健康数据模型和土著数据主权之间存在显著的紧张关系.
- 目前的数字健康实践往往未能充分解决土著人民的权利和利益.
- 伦理和有效的数字健康需要在数据治理中集中土著观点.
结论:
- 数字健康必须主动整合土著数据主权原则以实现道德.
- 合作方法和尊重土著权利对于通过数字健康改善土著健康结果至关重要.
- 解决数据采集,管理,分析和整合方面的挑战是为原住民群体提供公平的数字健康解决方案的关键.
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