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这些数据是谁的? 在口腔健康研究中的数据所有权和主权
A Jessani1,2, S A Gansky3, F Ramos-Gomez4
1Department of Dentistry, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada.
JDR clinical and translational research
|October 18, 2025
概括
基于社区的口腔健康参与性研究必须解决边缘化群体的数据所有权和主权问题. 伦理数据管理和包容性实践对于推进健康公平和确保社区利益至关重要.
科学领域:
- 口腔健康研究 口腔健康研究
- 基于社区的参与式研究.
- 卫生公平性健康公平性
背景情况:
- 基于社区的参与性研究 (CBPR) 对于让边缘化群体参与口腔健康研究至关重要.
- 在CBPR中,有关数据控制,股权,所有权和主权的道德挑战出现了.
- 弱势群体包括双灵,女同性恋,男同性恋,双性恋,跨性别者,酷儿或质疑,以及其他性取向和性别认同 (2SLGBTQ+) 个人,土著人民和种族/种族少数群体.
研究的目的:
- 探索涉及弱势群体的CBPR数据访问,控制和主权问题.
- 检查口腔健康研究数据管理中的伦理和法律挑战.
- 促进包容性研究和道德数据管理的最佳实践.
主要方法:
- 在2025年3月的美国牙科,口腔和脸研究协会年会上举行的研讨会.
- 探索数据访问,控制和主权的复杂动态.
- 展示展示合作方法的案例研究.
主要成果:
- 研讨会强调了数据所有权和主权在促进口腔健康公平方面发挥的关键作用.
- 强调了道德数据管理和包容性研究的最佳实践.
- 倡导整合文化价值观的多方面的框架,以获得公平的结果.
结论:
- 优先考虑社区的声音,权利和有意义的整合是必不可少的.
- 伦理数据管理对于大数据和基于社区的口腔健康研究至关重要.
- 可行的框架可以帮助建立信任,并确保文化敏感的结果.
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