ArticleJournal of genetic counseling2017
Pediatric Whole Exome Sequencing: an Assessment of Parents' Perceived and Actual Understanding.
Article in Journal of genetic counseling, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
What it found
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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.
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Parents' understanding of genome and exome sequencing for pediatric health conditions: a systematic review.European journal of human genetics : EJHG · 2022Pooled it
- Parent/caregiver needs during pediatric genome-wide sequencing: A scoping literature review.Journal of genetic counseling · 2026Article
- Adolescents' Experiences With Sequencing for Genetic Predisposition in Pediatric Cancer: A Quantitative Study.Psycho-oncology · 2026Article
- Publics' knowledge of, attitude to and motivation towards health-related genomics: a scoping review.European journal of human genetics : EJHG · 2024Article
- Knowledge, attitudes and decision regret: a longitudinal survey study of participants offered genome sequencing in the 100,000 Genomes Project.European journal of human genetics : EJHG · 2023Article
- Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.Psycho-oncology · 2022Article
- "Is that something that should concern me?": a qualitative exploration of parent understanding of their child's genomic test results.HGG advances · 2021Article
- Mixed-methods evaluation of the NHS Genomic Medicine Service for paediatric rare diseases: study protocol.NIHR open research · 2021Article
- Parental experiences of ultrarapid genomic testing for their critically unwell infants and children.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Genetic Counseling and Genome Sequencing in Pediatric Rare Disease.Cold Spring Harbor perspectives in medicine · 2020Review
- The genome empowerment scale: An assessment of parental empowerment in families with undiagnosed disease.Clinical genetics · 2019Article
- Genetic Counseling in the Era of Genomics: What's all the Fuss about?Journal of genetic counseling · 2018Article
- Social and behavioral science priorities for genomic translation.Translational behavioral medicine · 2018Article
- Whole-Genome and Whole-Exome Sequencing in Pediatric Oncology: An Assessment of Parent and Young Adult Patient Knowledge, Attitudes, and Expectations.JCO precision oncology · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Whole exome sequencing (WES) is an integral tool in the diagnosis of genetic conditions in pediatric patients, but concerns have been expressed about the complexity of the information and the possibility for secondary findings that need to be conveyed to those deciding about WES. Currently, there is no validated tool to assess parental understanding of WES. We developed and implemented a survey to assess perceived and actual understanding of WES in parents who consented to clinical WES for their child between July 2013 and May 2015. Fifty-three eligible surveys were returned (57% response rate). Areas with both low perceived and actual understanding about WES included how genes are analyzed and lack of protection against life insurance discrimination. Parents also had low actual understanding for two questions related to secondary findings - reporting of secondary findings in a parent (if tested) and whether secondary findings can be related to traits such as height and hair color. Further work to develop a validated tool to assess understanding of WES would be beneficial as WES is integrated more frequently into clinical care.
Indexed as
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Registered trials
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.