Evidence map›Paper›PMID 24691112›Full record

Trial reportInflammatory bowel diseases2014

Genetic literacy and patient perceptions of IBD testing utility and disease control: a randomized vignette study of genetic testing.

Gillian W Hooker, Holly Peay, Lori Erby, Theodore Bayless, Barbara B Biesecker, Debra L Roter

Abstract readRandomized Controlled Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Inflammatory bowel diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers.

0numbers the graph read from it
0cells of the map it votes in
29citing 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

29 citing papers in PubMed.

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  6. Neighborhood Opportunity and Genetic Literacy in a Representative Sample of US Adults.Prevention science : the official journal of the Society for Prevention Research · 2026
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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.

Gillian W Hooker*Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD; †Department of Health, Behavior and Society and the Center for Genomic Literacy and Communication, The Johns Hopkins Bloomberg School of Public Health, Baltimore, MD; and ‡Harvey M. and Lyn P. Meyerhoff Inflammatory Bowel Disease Center, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.
Holly Peay
Lori Erby
Theodore Bayless
Barbara B Biesecker
Debra L Roter

Funding

NHGRI/DIR Genetic Counseling Training ProgramZIEHG200353 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI ERBY, LORI · 2010 to 2025
$16.9M
Intramural NIH HHS Z99 HG999999
6 · The paper itself

Abstract

backgroundFindings from inflammatory bowel disease (IBD) genome-wide association studies are being translated clinically into prognostic and diagnostic indicators of disease. Yet, patient perception and understanding of these tests and their applicability to providing risk information is unclear. The goal of this study was to determine, using hypothetical scenarios, whether patients with IBD perceive genetic testing to be useful for risk assessment, whether genetic test results impact perceived control, and whether low genetic literacy may be a barrier to patient understanding of these tests.

methodsTwo hundred fifty seven patients with IBD from the Johns Hopkins gastroenterology clinics were randomized to receive a vignette depicting either a genetic testing scenario or a standard blood testing scenario. Participants were asked questions about the vignette and responses were compared between groups.

resultsPerceptions of test utility for risk assessment were higher among participants responding to the genetic vignette (P < 0.001). There were no significant differences in perceptions of control over IBD after hypothetical testing between vignettes (P = 0.24). Participant responses were modified by genetic literacy, measured using a scale developed for this study. Participants randomized to the genetic vignette who scored higher on the genetic literacy scale perceived greater utility of testing for risk assessment (P = 0.008) and more control after testing (P = 0.02).

conclusionsPatients with IBD perceive utility in genetic testing for providing information relevant to family members, and this appreciation is promoted by genetic literacy. Low genetic literacy among patients poses a potential threat to effective translation of genetic and genomic tests.

Indexed as

Attitude to HealthGenetic Predisposition to DiseaseHealth LiteracyAdolescentAdultAgedAged, 80 and overComprehensionFamilyFemaleFollow-Up StudiesGenetic TestingHumansInflammatory Bowel DiseasesMaleMiddle Aged

Identifiers

PMID24691112
PMCPMC4141772

What OpenQuestion holds

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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.