Evidence map›Paper›PMID 40306991›Full record

ArticleBMJ open2025

Understanding the reasons for declining to participate in cancer genetics and genomic studies in the USA: a scoping review protocol.

Joel Sanchez Mendez, Jessica Sanchez, Chenya Zhao, Vernon Shane Pankratz, Andrew L Sussman, Ursa Brown-Glaberman, Stephanie Cargill, Shiraz I Mishra, Mariana C Stern

Abstract read
In one paragraph

Article in BMJ open, 2025. 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

9 authors.

Joel Sanchez MendezPopulation and Public Health Sciences, University of Southern California, Los Angeles, California, USA.ORCID http://orcid.org/0000-0001-5552-1020
Jessica SanchezThe University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico, USA.ORCID http://orcid.org/0009-0003-9431-3656
Chenya ZhaoPopulation and Public Health Sciences, University of Southern California, Los Angeles, California, USA.
Vernon Shane PankratzThe University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico, USA.
Andrew L SussmanThe University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico, USA.
Ursa Brown-GlabermanThe University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico, USA.
Stephanie CargillAlbany Medical College, Albany, New York, USA.ORCID http://orcid.org/0000-0002-1782-0481
Shiraz I MishraThe University of New Mexico Comprehensive Cancer Center, Albuquerque, New Mexico, USA marianas@usc.edu smishra@unm.edu.
Mariana C SternPopulation and Public Health Sciences, University of Southern California, Los Angeles, California, USA marianas@usc.edu smishra@unm.edu.ORCID http://orcid.org/0000-0001-9777-4683

Funding

USC/NORRIS COMPREHENSIVE CANCER CENTER (CORE) SUPPORTP30CA014089 · NCI · UNIVERSITY OF SOUTHERN CALIFORNIA · PI MYLES G COCKBURN · 1985 to 2026
$181.4M
Tissue Modeling CoreU54CA233465 · NCI · UNIVERSITY OF SOUTHERN CALIFORNIA · PI Bodour Salhia · 2018 to 2026
$11.9M
NCI NIH HHS P30 CA014089NCI NIH HHS U54 CA233465
6 · The paper itself

Abstract

introductionCancer is the second leading cause of death in the USA. Cancer genetics and genomic studies have improved our understanding of risk, onset and progression. However, disparities by race and ethnicity have resulted in a lack of representation for minorities in these studies, contributing to unequal reductions in the cancer burden across populations. Moreover, the reasons why some individuals decline to participate in cancer genetics and/or genomic studies across diverse populations remain unclear. This review will summarise the main reasons (concerns) associated with declining to participate in cancer genetics and/or genomic studies for individuals with a history of cancer living in the USA and Puerto Rico (PR), considering race and ethnicity. METHODS AND ANALYSIS: We will follow the methodology presented by the Joanna Briggs Institute and the Preferred Reporting Items for Systematic Reviews Statement extended to Scoping Reviews to guide manuscript generation. A standardised search strategy developed in collaboration with a health sciences librarian will be deployed in Medline (PubMed), Embase (Ovid) and Scopus from database inception till present. The search strategy consists of three concepts: (1) cancer; (2) genetics and genomic research; (3) declination to participate in research studies. Title and abstract screening, followed by full-text review, will be conducted by independent reviewers to determine study inclusion. Only the peer-reviewed literature in English, conducted in the USA and PR will be considered. Findings will be presented as a numerical summary, graphical presentation and narrative review of the literature. ETHICS AND DISSEMINATION: Ethical review is not required for scoping reviews. This review aims to facilitate the development of targeted strategies to increase participation in cancer genetics and/or genomic studies across diverse populations. Results will be disseminated through a peer-reviewed publication and conference presentations. The protocol is registered in the Open Science Framework (www.osf.io).

Indexed as

GenomicsNeoplasmsHumansPuerto RicoResearch DesignScoping Reviews as TopicUnited StatesCancer geneticsDecision MakingHealth EquityHealth LiteracyPatient Participation

Identifiers

PMID40306991
PMCPMC12049895

What OpenQuestion holds

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LicenceCC BY-NC
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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.