Evidence map›Paper›PMID 42517577›Full record

ArticleJournal of genetic counseling2026

Community-Driven Research Priorities for Genetic Counseling: Shaping the Future of Genetic Counseling Research by Centering Multicultural Perspectives.

Victoria R Johnson, Elena R Fisher, Kathleen A Culhane-Pera, Crystal Y Lumpkins, Abdirashid Shire, Mariana Ramírez, Aida Parra de Young, Carolina E Uribe Abad, Eric Yang, Sey Lee and 4 more

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. 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

14 authors.

Victoria R JohnsonDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.ORCID https://orcid.org/0009-0003-6266-4531
Elena R FisherDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.
Kathleen A Culhane-PeraSoLaHmo Partnership for Health and Wellness, Community-University Health Care Center, Minneapolis, Minnesota, USA.
Crystal Y LumpkinsHuntsman Cancer Institute, Salt Lake City, Utah, USA.
Abdirashid ShireShire Scientific, LLC, Minneapolis, Minnesota, USA.
Mariana RamírezDepartment of Population Health, JUNTOS Center for Advancing Latino Health, University of Kansas Medical Center, Kansas City, Kansas, USA.
Aida Parra de YoungCommunity Advisory Board, JUNTOS Center for Advancing Latino Health, Kansas City, Kansas, USA.
Carolina E Uribe AbadCommunity Advisory Board, JUNTOS Center for Advancing Latino Health, Kansas City, Kansas, USA.
Eric YangHmong GC-PRO Community Advisory Board, Minneapolis, Minnesota, USA.
Sey LeeSoLaHmo Partnership for Health and Wellness, Community-University Health Care Center, Minneapolis, Minnesota, USA.
Abdiziz AbdiShire Somali GC-PRO Community Advisory Board, Minneapolis, Minnesota, USA.
J Michelle VannFaith Works "Connecting for a Healthier Community" Community Advisory Board, Kansas City, Kansas, USA.
Stephanie MossFaith Works "Connecting for a Healthier Community" Community Advisory Board, Kansas City, Kansas, USA.
Heather A ZierhutDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, Minnesota, USA.ORCID https://orcid.org/0000-0003-1941-664X

Funding

Genetic Counseling Processes Result in Outcomes (GC-PRO) StudyR01HG011916 · NHGRI · UNIVERSITY OF MINNESOTA · PI ZIERHUT, HEATHER · 2022 to 2025
$2.6M
NHGRI NIH HHS R01 HG011916NHGRI NIH HHS R01HG011916University of Minnesota Office of Discovery and Translation
6 · The paper itself

Abstract

Community-based participatory research (CBPR), a research approach that centers the collective strengths of community-researcher partnerships, can direct future genetic counseling (GC) research initiatives toward issues that are critical to communities most impacted by genomic healthcare disparities. Co-developed, innovative solutions to persistent research gaps may help address community access to and education about genomic healthcare. This study utilized a CBPR approach to develop a prioritized list of GC research directions that align with the goals and needs of representatives from racially/ethnically underrepresented communities in research. Twelve members from four community advisory boards (CABs) representing the Hispanic/Latino, Black/African American, Hmong, and Somali communities came together to complete three card sorting activities. Twenty cards describing research project ideas were developed through inductive qualitative content analysis of 22 meetings held with individual CABs (April 2023 to May 2025). Three members from each CAB first sorted their own CAB's project idea cards. Then, members were divided into three new small groups with one member from each CAB. Cross-CAB groups completed a second card sorting activity to identify their most important project ideas, followed by a third sorting activity to prioritize their top card. The cross-CAB identified three research priorities: (A) work with primary care clinics to encourage more people to see a genetic counselor, (B) learn which GC techniques are best according to patients and the community, and (C) investigate whether educational projects make people more aware of GC or not. By centering multicultural perspectives in the creation of a GC research agenda, the future of GC research can be better aligned with the priorities of communities and eventually support novel, tailored strategies to address genomic healthcare disparities.

Indexed as

Community-Based Participatory ResearchCultural DiversityGenetic CounselingHumanscard sortcommunity‐based participatory action researchcommunity‐based participatory researchcommunity partnershipsfuturegenetic counselinggenetics educationgenomicsresearch prioritiesresearch recommendations

Identifiers

PMID42517577
PMCPMC13411192

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.