Evidence map›Paper›PMID 41632356›Full record

ArticleJournal of community genetics2026

Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals.

Carissa A Sherman, Luke C Nez, Kaja M Aagaard, Dalaki J Livingston, Erika Blacksher, Justin Reedy, Vanessa Y Hiratsuka, Walter Phelps, Jessica W Blanchard, Justin R Lund and 4 more

Abstract read
In one paragraph

Article in Journal of community genetics, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

14 authors.

Carissa A ShermanDepartment of Biomedical Informatics, University of Colorado Anschutz, Aurora, CO, USA.
Luke C NezInstitute for Society and Genetics, University of California Los Angeles, Los Angeles, CA, USA.
Kaja M AagaardDepartment of Biomedical Informatics, University of Colorado Anschutz, Aurora, CO, USA.
Dalaki J LivingstonDepartment of Communication, University of Utah, Salt Lake City, UT, USA.
Erika BlacksherDepartment of History and Philosophy of Medicine, University of Kansas Medical Center, Kansas City, USA.
Justin ReedyCenter for Applied Social Research, University of Oklahoma, Norman, OK, USA.
Vanessa Y HiratsukaResearch Department, Southcentral Foundation, Anchorage, AK, USA.
Walter PhelpsFlint Point LLC, Flagstaff, AZ, USA.
Jessica W BlanchardCenter for Applied Social Research, University of Oklahoma, Norman, OK, USA.
Justin R LundDepartment of Anatomy and Cell Biology, Oklahoma State University Center for Health Sciences, Tulsa, OK, USA.
Julie A BeansResearch Department, Southcentral Foundation, Anchorage, AK, USA.
F Leah NezDepartment of Bioethics, Case Western Reserve University, Cleveland, OH, USA.
Nanibaa' A GarrisonInstitute for Society and Genetics, the Institute for Precision Health, and the Division of General Internal Medicine & Health Services Research, University of California, Los Angeles, Los Angeles, CA, USA.
Katrina G ClawDepartment of Biomedical Informatics, University of Colorado Anschutz, Aurora, CO, USA. katrina.claw@cuanschutz.edu.

Funding

Trust and Mistrust in American Indian and Alaska Native CommunitiesRM1HG009042 · NHGRI · UNIVERSITY OF OKLAHOMA · PI SPICER, PAUL G · 2016 to 2024
$8.5M
Pharmacogenomic approaches to drug metabolism in American Indian/Alaska Native PeopleR35HG011319 · NHGRI · UNIVERSITY OF COLORADO DENVER · PI CLAW, KATRINA G · 2020 to 2024
$2.9M
Clinical and Translational Science Collaborative of Northern Ohio, CTSA Predoctoral T32 at Case Western Reserve UniversityT32TR004521 · NCATS · CASE WESTERN RESERVE UNIVERSITY · PI Erika S Trapl, Scott Matthew Williams · 2025 to 2026
$918k
NCATS NIH HHS T32 TR004521NHGRI NIH HHS R35 HG011319NHGRI NIH HHS RM1 HG009042NIHGRI RM1 HG009042-04S1NIH HHS RM1 HG009042-03S2NIH R35 Genomic Innovator Award R35HG011319
6 · The paper itself

Abstract

Various challenges including cultural concerns, the shortage of Diné (Navajo) scientists and scientists with cultural competence to engage with Diné communities, and the need for rigorous policies regarding genetic research led to the establishment of a moratorium on genetic research within the Navajo Nation in 2002. Previous surveys with Diné interest holders highlighted ongoing uncertainty about lifting the moratorium and underscored the need for further community consultation and education. Deliberative democratic engagement has been an effective approach for exploring Indigenous community values regarding genomic research. To assess perspectives on genetic research and inform future policy, we conducted a two-day virtual deliberation with 17 research and healthcare professionals associated with the Navajo Nation, including Diné (n = 15) and non-Diné (n = 2) deliberants. Deliberants varied in their knowledge of genetics (n = 5 reported knowing "a lot"; n = 12 "a little bit"), and a majority (n = 13) were aware of the moratorium. Two overarching themes, "life and history experiences" and "values," emerged, reflecting how personal and professional backgrounds, alongside individual and collective standards, shaped deliberants' views on genetic research and its practices. Subthemes within these categories offered deeper insights into their perspectives. Although deliberants expressed caution regarding exploratory genetic studies, there was interest in using genetic research to advance individualized healthcare. Deliberants' concerns emphasized the need for a robust genetic research policy that prioritizes Diné culture, community interests, public health and wellbeing, and the sovereignty of the Navajo Nation.

Indexed as

Deliberative methodsGeneticsNavajo NationResearch moratoriumResearch policy

Identifiers

PMID41632356
PMCPMC12868479

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
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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.