Design and Implementation of an Action Plan for Justice, Equity, Diversity, and Inclusion Within the Clinical Genome Resource

Authors

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

Language

English

Publication Date

2-6-2025

Journal

American Journal of Human Genetics

DOI

10.1016/j.ajhg.2024.12.009

PMID

39793579

PMCID

PMC11866942

PubMedCentral® Posted Date

1-9-2025

PubMedCentral® Full Text Version

Post-print

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.

Keywords

Humans, Social Justice, Genome, Hu/man, United States, Diversity, Equity, Inclusion, genetics, justice, equity, diversity, inclusion, social justice, JEDI, Clinical Genome Resource, ClinGen

Published Open-Access

yes

Recommended Citation

Popejoy, Alice B; Ritter, Deborah I; Azzariti, Danielle; et al., "Design and Implementation of an Action Plan for Justice, Equity, Diversity, and Inclusion Within the Clinical Genome Resource" (2025). Faculty and Staff Publications. 5146.
https://digitalcommons.library.tmc.edu/baylor_docs/5146