Evidence map›Paper›PMID 31886451›Full record

ArticleJCO precision oncology2017

Parental Perspectives on Whole Exome Sequencing in Pediatric Cancer: A Typology of Perceived Utility.

Janet Malek, Melody J Slashinski, Jill O Robinson, Amanda M Gutierrez, D Williams Parsons, Sharon E Plon, Laurence B McCullough, Amy L McGuire

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in JCO precision oncology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
30citing papers in PubMed, 2 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

30 citing papers in PubMed, 2 syntheses or guidelines 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

8 authors.

Janet MalekCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Melody J SlashinskiSchool of Public Health & Health Sciences, University of Massachusetts, Amherst, MA.
Jill O RobinsonCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Amanda M GutierrezCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
D Williams ParsonsDepartment of Pediatrics, Baylor College of Medicine, Houston, TX.
Sharon E PlonDepartment of Pediatrics, Baylor College of Medicine, Houston, TX.
Laurence B McCulloughCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX.

Funding

Measuring Perceptions of Utility of Clinical Genome Sequencing: Instrument Testing and ValidationU01HG006485 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI MCGUIRE, AMY L, PARSONS, DONALD W. · 2012 to 2021
$22.1M
NHGRI NIH HHS U01 HG006485
6 · The paper itself

Abstract

purposeTo explore how parents of pediatric cancer patients perceived the utility of clinical tumor and germline whole-exome sequencing (WES) results. PATIENTS AND

methodsWe conducted longitudinal interviews with parents of a diverse pediatric cancer population before disclosure of WES results (n=64), then one to eight months (n=33) after disclosure. Interview transcripts were analyzed using a thematic qualitative approach.

resultsParents identified a broad range of types of utility for their child's WES results. Even when results did not affect their child's current treatment, they expressed optimism about future clinical utility for their child, themselves, and other family members. Parents also reported experiencing psychological utility including peace of mind, relief of guilt, and satisfaction of curiosity. Pragmatic utility, such as the ability to plan for the future and make better reproductive decisions, was also described.

conclusionParents of pediatric cancer patients perceive WES to have broad utility, including psychological and pragmatic utility, even if there is no direct impact on clinical care. Further work will need to consider how the value of genomic information should be characterized, how risks and benefits should be described, and how these results should inform recommendations and decisions about using WES.

Identifiers

PMID31886451
PMCPMC6934167

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.