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临床基因组资源中关于公正、公平、多样性和包容性的行动计划的设计与实施。

Design and implementation of an action plan for justice, equity, diversity, and inclusion within the Clinical Genome Resource.

作者信息

Popejoy Alice B, Ritter Deborah I, Azzariti Danielle, Berg Jonathan S, Bulkley Joanna E, Cho Mildred, Gonzaga-Jauregui Claudia, Klein Teri E, Martschenko Daphne O, Oni-Orisan Akinyemi, Ramos Erin M, Rehm Heidi L, Riggs Erin R, Wright Matthew W, Yudell Michael, Plon Sharon E, Morales Joannella

机构信息

Department 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.

Baylor College of Medicine and Texas Children's Hospital, Department of Pediatrics, Houston, TX, USA.

出版信息

Am J Hum Genet. 2025 Feb 6;112(2):215-223. doi: 10.1016/j.ajhg.2024.12.009. Epub 2025 Jan 9.

Abstract

How might members of a large, multi-institutional research and resource consortium foster justice, equity, diversity, and inclusion as central to its mission, goals, governance, and culture? These four principles, often referred to as JEDI, can be aspirational-but to be operationalized, they must be supported by concrete actions, investments, and a persistent long-term commitment to the principles themselves, which often requires self-reflection and course correction. We present here the iterative design process implemented across the Clinical Genome Resource (ClinGen) that led to the development of an action plan to operationalize JEDI principles across three major domains, with specific deliverables and commitments dedicated to each. Active involvement of consortium leadership, buy-in from its members at all levels, and support from NIH program staff at pivotal stages were essential to the success of this effort. The ClinGen JEDI action plan that resulted from our process is a living document and roadmap whose target goals and deliverables will continue to evolve. Here, we offer a transparent account of how a large, multi-site biomedical research consortium achieved this, as well as the challenges and opportunities we encountered on this first step in our journey toward enacting JEDI principles in our sphere of influence. We hope that others seeking to engage in this work will gain valuable insights from our process, experience, and lessons learned.

摘要

一个大型的多机构研究与资源联盟的成员如何将公正、公平、多样性和包容性作为其使命、目标、治理和文化的核心来促进?这四项原则,通常被称为JEDI,可能是理想性的——但要将其付诸实践,它们必须得到具体行动、投资以及对这些原则本身的持续长期承诺的支持,而这通常需要自我反思和方向修正。我们在此介绍临床基因组资源(ClinGen)实施的迭代设计过程,该过程促成了一项行动计划的制定,以便在三个主要领域将JEDI原则付诸实践,并为每个领域设定了具体的可交付成果和承诺。联盟领导层的积极参与、各级成员的认同以及美国国立卫生研究院项目工作人员在关键阶段的支持对这项工作的成功至关重要。我们的过程所产生的ClinGen JEDI行动计划是一份动态文件和路线图,其目标和可交付成果将不断演变。在此,我们提供一个透明的说明,讲述一个大型多站点生物医学研究联盟是如何做到这一点的,以及我们在朝着在我们的影响范围内践行JEDI原则的征程的第一步中所遇到的挑战和机遇。我们希望其他寻求参与这项工作的人能从我们的过程、经验和教训中获得宝贵的见解。

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