Evidence map›Paper›PMID 39793579›Full record

ReviewAmerican journal of human genetics2025

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

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 and 7 more

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in American journal of human genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Alice B PopejoyDepartment 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.
Deborah I RitterBaylor College of Medicine and Texas Children's Hospital, Department of Pediatrics, Houston, TX, USA. Electronic address: dritter@bcm.edu.
Danielle AzzaritiMedical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, USA.
Jonathan S BergDepartment of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
Joanna E BulkleyDepartment of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR, USA.
Mildred ChoStanford Center for Biomedical Ethics, Stanford University, Stanford, CA, USA; Department of Medicine, Stanford University, Stanford, CA, USA; Department of Pediatrics, Stanford University, Stanford, CA, USA.
Claudia Gonzaga-JaureguiInternational Laboratory for Human Genome Research, Laboratorio Internacional de Investigación sobre el Genoma Humano, Universidad Nacional Autónoma de México, Queretaro, Mexico.
Teri E KleinDepartment of Medicine, Stanford University, Stanford, CA, USA; Department of Biomedical Data Science, Stanford University, Stanford, CA, USA.
Daphne O MartschenkoStanford Center for Biomedical Ethics, Stanford University, Stanford, CA, USA; Department of Pediatrics, Stanford University, Stanford, CA, USA.
Akinyemi Oni-OrisanDepartment of Clinical Pharmacy, University of California, San Francisco, San Francisco, CA, USA.
Erin M RamosNational Human Genome Research Institute, National Institutes of Health (NIH), Bethesda, MD, USA.
Heidi L RehmMedical and Population Genetics, Broad Institute of MIT and Harvard, Cambridge, MA, USA; Center for Genomic Medicine, Massachusetts General Hospital, Boston, MA, USA.
Erin R RiggsGeisinger Health System, Danville, PA, USA.
Matthew W WrightDepartment of Biomedical Data Science, Stanford University, Stanford, CA, USA.
Michael YudellCollege of Health Solutions, Arizona State University, Phoenix, AZ, USA.
Sharon E PlonBaylor College of Medicine and Texas Children's Hospital, Department of Pediatrics, Houston, TX, USA.
Joannella MoralesNational Human Genome Research Institute, National Institutes of Health (NIH), Bethesda, MD, USA.

Funding

Baylor College of Medicine/Stanford University Clinical Genome Resource (CLINGEN)U24HG009649 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI TERI Ellen KLEIN, Aleksandar Milosavljevic · 2021 to 2026
$31.5M
The Clinical Genome Resource – Advancing genomic medicine through biocuration and expert assessment of genes and variants at scaleU24HG009650 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI JONATHAN S BERG, Jessica Ezzell Hunter · 2021 to 2026
$30.0M
ClinGen AI Data Delivery SupplementU24HG006834 · NHGRI · BROAD INSTITUTE, INC. · PI Marina DiStefano, CHRISTA LESE MARTIN · 2021 to 2026
$26.7M
NHGRI NIH HHS U24 HG006834NHGRI NIH HHS U24 HG009649NHGRI NIH HHS U24 HG009650
6 · The paper itself

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.

Indexed as

Genome, HumanSocial JusticeDiversity, Equity, InclusionHumansUnited StatesClinGenClinical Genome ResourcediversityequitygeneticsinclusionJEDIjusticesocial justice

Identifiers

PMID39793579
PMCPMC11866942

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.