Evidence map›Paper›PMID 38480478›Full record

ArticleJournal of genetic counseling2025

Genetic counselors' and community clinicians' implementation and perceived barriers to informed consent during pre-test counseling for hereditary cancer risk.

Alexandra Capasso, Bita Nehoray, Nicholas Gorman, Emily A Quinn, Daiana Bucio, Kathleen R Blazer

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2025. 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

6 authors.

Alexandra CapassoSchool of Pharmacy and Health Sciences, Keck Graduate Institute, Claremont, California, USA.ORCID 0009-0008-0882-0640
Bita NehorayDivision of Clinical Cancer Genomics, City of Hope National Medical Center, Duarte, California, USA.
Nicholas GormanSchool of Pharmacy and Health Sciences, Keck Graduate Institute, Claremont, California, USA.
Emily A QuinnSchool of Pharmacy and Health Sciences, Keck Graduate Institute, Claremont, California, USA.
Daiana BucioIndependent Scholar.
Kathleen R BlazerDivision of Clinical Cancer Genomics, City of Hope National Medical Center, Duarte, California, USA.

Funding

Cancer Genetics Professional Education in a Global Community of PracticeR25CA171998 · NCI · BECKMAN RESEARCH INSTITUTE/CITY OF HOPE · PI KATHLEEN R. BLAZER · 2013 to 2026
$4.3M
Community Cancer Genetics and Research Training (Revision)R25CA112486 · NCI · CITY OF HOPE/BECKMAN RESEARCH INSTITUTE · PI WEITZEL, JEFFREY N · 2005 to 2009
$1.0M
NCI NIH HHS R25 CA112486NCI NIH HHS R25 CA171998NHGRI NIH HHS L70 HG013241
6 · The paper itself

Abstract

As demand for genetic cancer risk assessment (GCRA) continues to increase, so does the sense of urgency to scale up efforts to triage patients, facilitate informed consent, and order genetic testing for cancer risk. The National Society of Genetic Counselors outlines the elements of informed consent that should be addressed in a GCRA session. While this practice resource aims to improve health equity, research on how well the elements of informed consent are implemented in practice is lacking. This retrospective and prospective mixed-methods study assessed how adequately the elements of informed consent are addressed during pre-test GCRA among 307 community clinicians (CC) and 129 cancer genetic counselors (GC), and barriers they face to addressing these elements. Results revealed that more than 90% of both cohorts consistently addressed components of at least 5 of the 10 elements of informed consent during a pre-test consultation. Technical aspects and accuracy of the test and utilization of test results were the most similarly addressed elements. Notably, GCs more often review the purpose of the test and who to test, general information about the gene(s), and economic considerations whereas CCs more often review alternatives to testing. Both cohorts reported psychosocial aspects of the informed consent process as the least adequately addressed element. Time constraints and patient-related concerns were most often cited by both cohorts as barriers to optimal facilitation of informed consent. Additional barriers reported by CCs included provider lack of awareness, experience, or education, and availability of resources and institutional support. Findings from this study may contribute to the development of alternative delivery models that incorporate supplementary educational tools to enhance patient understanding about the utility of genetic testing, while helping to mitigate the barrier of time constraints. Equally important is the use of this information to develop continuing education tools for providers.

Indexed as

CounselorsGenetic CounselingGenetic Predisposition to DiseaseInformed ConsentNeoplasmsAdultFemaleGenetic TestingHumansMaleMiddle AgedProspective StudiesRetrospective Studieseducationgenetic counselinggenetics servicesrisk assessmentservice delivery models

Identifiers

PMID38480478
PMCPMC11393174

What OpenQuestion holds

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Registered trials

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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.