Evidence map›Paper›PMID 29928697›Full record

ArticleMDM policy & practice

Development and Validation of a Genomic Knowledge Scale to Advance Informed Decision Making Research in Genomic Sequencing.

Michelle M Langer, Myra I Roche, Noel T Brewer, Jonathan S Berg, Cynthia M Khan, Cristina Leos, Elizabeth Moore, Michelle Brown, Christine Rini

Abstract read
In one paragraph

Article in MDM policy & practice. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
35citing papers in PubMed, 1 pooled it
–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

35 citing papers in PubMed, 1 synthesis or guideline pooled it.

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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

9 authors.

Michelle M LangerAmerican Institutes for Research, University of North Carolina, Chapel Hill, NC.
Myra I RocheDepartments of Pediatrics and Genetics, University of North Carolina, Chapel Hill, NC.
Noel T BrewerDepartment of Health Behavior, University of North Carolina, Chapel Hill, NC.
Jonathan S BergDepartment of Genetics, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC.
Cynthia M KhanEconometrica, Inc., Bethesda, MD.
Cristina LeosDepartment of Health Behavior, University of North Carolina, Chapel Hill, NC.
Elizabeth MooreDepartment of Health Behavior, University of North Carolina, Chapel Hill, NC.
Michelle BrownDepartment of Obstetrics and Gynecology, University of Chicago, Chicago, IL.
Christine RiniCenter for Genomics and Society, University of North Carolina, Chapel Hill, NC.

Funding

North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2U01HG006487 · NHGRI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI BERG, JONATHAN S, POWELL, BRADFORD C. · 2012 to 2021
$22.7M
Network Group Integrated Translational Science Centers ApplicationU10CA181009 · NCI · UNIV OF NORTH CAROLINA CHAPEL HILL · PI HAYES, DAVID N, PEROU, CHARLES M · 2014 to 2018
$3.4M
NCI NIH HHS U10 CA181009NHGRI NIH HHS U01 HG006487
6 · The paper itself

Abstract

backgroundThis study evaluated the psychometric properties of a new, comprehensive measure of knowledge about genomic sequencing, the University of North Carolina Genomic Knowledge Scale (UNC-GKS).

methodsThe UNC-GKS assesses knowledge in four domains thought to be critical for informed decision making about genomic sequencing. The scale was validated using classical test theory and item response theory in 286 adult patients and 132 parents of pediatric patients undergoing diagnostic whole exome sequencing (WES) in the NCGENES study.

resultsThe UNC-GKS assessed a single underlying construct (genomic knowledge) with good internal reliability (Cronbach's alpha = 0.90). Scores were most informative (able to discriminate between individuals with different levels of genomic knowledge) at one standard deviation above the scale mean or lower, a range that included most participants. Convergent validity was supported by associations with health literacy and numeracy ( DISCUSSION: Findings supported the promise of the UNC-GKS as a valid and reliable measure of genomic knowledge among people facing complex decisions about WES and comparable sequencing methods. It is neither disease- nor population-specific, and it functioned well across important subgroups, making it usable in diverse populations.

Indexed as

genomic sequencinginformed decision makingknowledgewhole exome sequencing

Identifiers

PMID29928697
PMCPMC6005662

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.