在基因组研究中公平地纳入种族化社区:范围审查
Arafaat Valiani1,2, Mohammad M H Raihan2,3, Meriem Aroua2,3
1Department of History and Global Health Program, University of Oregon, Eugene, Oregon, USA.
BMJ open
|November 7, 2025
概括
本次审查强调了种族化社区参与人类基因组研究的障碍,包括排斥和不信任. 真正的参与对于公平的纳入精确健康计划至关重要.
科学领域:
- 基因组学和遗传学 基因组学和遗传学
- 生物伦理与健康法 生物伦理与健康法
- 公共卫生与健康公平 公共卫生与健康公平
背景情况:
- 基因组加拿大投资于种族化群体的包容性,但人类基因组学中的特定公平考虑需要进一步探索.
- 让多元化社区参与基因组研究带来了独特的挑战和机遇.
研究的目的:
- 对种族化社区在人类基因组研究中的公平参与进行范围审查.
- 从基因组学家,政策制定者,生物伦理学家和社区领导人的角度确定参与的障碍和促进者.
主要方法:
- 使用阿克西和奥马利框架进行全面的范围审查.
- 分析来自加拿大,美国,英国,澳大利亚和新西兰的学术和灰色文学.
- 以布劳恩和克拉克的原则为指导的主题综合.
主要成果:
- 关键的障碍包括缺乏交通,有限的遗传学知识,以及由于污名化和健康差异造成的不信任.
- 存在着不同的看法,受文化价值观的影响,偏好透明和自主.
- 基于社区的参与模式和生物银行的有限使用妨碍了公平的参与.
结论:
- 优先考虑与种族化社区的真实参与战略.
- 在遗传学,人类基因组学,精准医学和精准健康研究方面提高包容性和公平性.
- 解决系统性障碍,确保公平参与和利益共享.
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