在临床基因组资源中设计和实施正义、公平、多样性和包容性的行动计划。

IF 8.1 1区 生物学 Q1 GENETICS & HEREDITY American journal of human genetics Pub Date : 2025-01-07 DOI:10.1016/j.ajhg.2024.12.009
Alice B Popejoy, Deborah I Ritter, Danielle Azzariti, Jonathan S Berg, Joanna E Bulkley, Mildred Cho, Claudia Gonzaga-Jauregui, Teri E Klein, Daphne O Martschenko, Akinyemi Oni-Orisan, Erin M Ramos, Heidi L Rehm, Erin R Riggs, Matthew W Wright, Michael Yudell, Sharon E Plon, Joannella Morales
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引用次数: 0

摘要

一个大型的、多机构的研究和资源联盟的成员如何将正义、公平、多样性和包容性作为其使命、目标、治理和文化的核心?这四个原则,通常被称为JEDI,可以是理想的,但是要操作化,它们必须得到具体的行动、投资和对原则本身的持久的长期承诺的支持,这通常需要自我反思和路线修正。我们在这里介绍了在临床基因组资源(ClinGen)上实施的迭代设计过程,该过程导致了在三个主要领域实施JEDI原则的行动计划的发展,并对每个领域都有具体的可交付成果和承诺。联盟领导的积极参与,各级成员的支持,以及NIH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。由我们的过程产生的ClinGen JEDI行动计划是一个活生生的文档和路线图,其目标目标和可交付成果将继续发展。在这里,我们提供了一个透明的说明,说明一个大型的、多地点的生物医学研究联盟是如何实现这一目标的,以及我们在我们的影响范围内制定JEDI原则的第一步中遇到的挑战和机遇。我们希望其他寻求参与这项工作的人能够从我们的过程、经验和教训中获得有价值的见解。
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Design and implementation of an action plan for justice, equity, diversity, and inclusion within the Clinical Genome Resource.

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.

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来源期刊
CiteScore
14.70
自引率
4.10%
发文量
185
审稿时长
1 months
期刊介绍: The American Journal of Human Genetics (AJHG) is a monthly journal published by Cell Press, chosen by The American Society of Human Genetics (ASHG) as its premier publication starting from January 2008. AJHG represents Cell Press's first society-owned journal, and both ASHG and Cell Press anticipate significant synergies between AJHG content and that of other Cell Press titles.
期刊最新文献
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