Evidence map›Paper›PMID 36055208›Full record

ReviewAmerican journal of human genetics2022

Addressing underrepresentation in genomics research through community engagement.

Amy A Lemke, Edward D Esplin, Aaron J Goldenberg, Claudia Gonzaga-Jauregui, Neil A Hanchard, Julie Harris-Wai, Justin E Ideozu, Rosario Isasi, Andrew P Landstrom, Anya E R Prince and 7 more

Abstract readReview
In one paragraph

Review in American journal of human genetics, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 74 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
74citing papers in PubMed, 1 pooled it
–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

74 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Trial
  3. Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026
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14 more citing papers are in PubMed but not listed here.

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.

Amy A LemkeProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Norton Children's Research Institute, affiliated with the University of Louisville School of Medicine, Louisville, KY, USA. Electronic address: amy.lemke@louisville.edu.
Edward D EsplinProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Invitae, San Francisco, CA, USA.
Aaron J GoldenbergProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Department of Bioethics, Case Western Reserve University School of Medicine, Cleveland OH, USA.
Claudia Gonzaga-JaureguiProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; International Laboratory for Human Genome Research, Laboratorio Internacional de Investigación sobre el Genoma Humano, Universidad Nacional Autónoma de México, Querétaro, México.
Neil A HanchardProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Childhood Complex Disease Genomics Section, Center for Precision Health Research, National Human Genomics Research Institute, National Institutes of Health, Bethesda, MD, USA.
Julie Harris-WaiProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; University of California at San Francisco, Department of Social and Behavioral Sciences, Program on Bioethics, Institute for Health and Aging, San Francisco CA, USA.
Justin E IdeozuProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Genomic Medicine, Genetic Research Center, AbbVie, Chicago, IL, USA.
Rosario IsasiProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Dr. J. T. Macdonald Foundation Department of Human Genetics, University of Miami Leonard M. Miller School of Medicine, Miami FL, USA; John P. Hussman Institute for Human Genomics, University of Miami Leonard M. Miller School of Medicine, Miami FL, USA.
Andrew P LandstromProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Department of Pediatrics, Division of Pediatric Cardiology, Duke University School of Medicine, Durham, NC, USA.
Anya E R PrinceProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; University of Iowa College of Law, Iowa City IA, USA.
Erin TurbittProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Discipline of Genetic Counselling, University of Technology Sydney, Ultimo NSW 2007, Australia.
Maya SabatelloProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Center for Precision Medicine and Genomics, Department of Medicine, Columbia University, New York, NY, USA; Division of Ethics, Department of Medical Humanities and Ethics, Columbia University, New York, NY, USA.
Samantha A Schrier VerganoProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Division of Medical Genetics and Metabolism, Children's Hospital of The King's Daughters, Norfolk, VA, USA.
Matthew R G TaylorProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Adult Medical Genetics Program, Department of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Joon-Ho YuProfessional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Division of Genetic Medicine, Department of Pediatrics , University of Washington School of Medicine, Seattle, WA, USA; Division of Bioethics and Palliative Care, Department of Pediatrics , University of Washington School of Medicine, Seattle, WA, USA; Institute for Public Health Genetics, School of Public Health, University of Washington, Seattle, WA, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, WA, USA.
Kyle B BrothersProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Norton Children's Research Institute, affiliated with the University of Louisville School of Medicine, Louisville, KY, USA.
Nanibaa' A GarrisonProfessional Practice and Social Implications Committee, American Society of Human Genetics, Rockville MD, USA; Professional Practice and Social Implications Community Engagement Guidance Writing Group, American Society of Human Genetics, Rockville, MD, USA; Institute for Society and Genetics, University of California, Los Angeles, Los Angeles, CA, USA; Institute for Precision Health, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA; Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

The vision of the American Society of Human Genetics (ASHG) is that people everywhere will realize the benefits of human genetics and genomics. Implicit in that vision is the importance of ensuring that the benefits of human genetics and genomics research are realized in ways that minimize harms and maximize benefits, a goal that can only be achieved through focused efforts to address health inequities and increase the representation of underrepresented communities in genetics and genomics research. This guidance is intended to advance community engagement as an approach that can be used across the research lifecycle. Community engagement uniquely offers researchers in human genetics and genomics an opportunity to pursue that vision successfully, including by addressing underrepresentation in genomics research.

Indexed as

GenomicsResearch PersonnelHumansUnited States

Identifiers

PMID36055208
PMCPMC9502069

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.