在临床基因组资源中为正义,公平,多样性和包容性设计和实施行动计划
Alice B Popejoy1, Deborah I Ritter2, Danielle Azzariti3
1Department of Public Health Sciences (Epidemiology Division), School of Medicine, University of California, Davis, Davis, CA, USA; UC Davis Comprehensive Cancer Center, UC Davis Health, Sacramento, CA, USA.
临床基因组资源 (ClinGen) 开发了一项行动计划,以使正义,公平,多样性和包容 (JEDI) 原则变得可行. 该计划指导了研究联盟的具体行动和长期承诺.
科学领域:
- 生物医学研究的研究.
- 财团管理团队的管理.
- 卫生公平性健康公平性
背景情况:
- 正义,公平,多样性和包容 (JEDI) 原则是有抱负的,但需要实施.
- 大规模的多机构研究联盟在将JEDI整合到其核心功能中面临挑战.
- 临床基因组资源 (ClinGen) 试图将JEDI原则嵌入其使命,目标,治理和文化中.
研究的目的:
- 概述一个大型研究联盟中开发JEDI行动计划的代设计过程.
- 详细说明JEDI原则在关键领域的运行路线图,并提供具体的交付成果.
- 为其他旨在实施JEDI的财团分享经验教训和见解.
主要方法:
- 实施了一种代设计过程,涉及财团领导和成员.
- 制定了一个JEDI行动计划,包括三个主要领域的具体成果.
- 参与NIH计划人员在关键阶段提供支持.
主要成果:
- 成功创建了临床基因组资源 (ClinGen) 的JEDI行动计划.
- 该计划作为一个有生命的文件,具有不断变化的目标和交付成果.
- 领导层和成员的积极参与和支持对成功至关重要.
结论:
- 实现JEDI的运行需要具体的行动,持续的承诺和自我反思.
- 为了将JEDI整合到研究联盟中,必须制定一个合作开发的结构化行动计划.
- 对于其他追求JEDI倡议的组织来说,ClinGen的经验提供了一个有价值的模型.
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