Observational studyJournal of empirical research on human research ethics : JERHRE2017
An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research.
Observational study in Journal of empirical research on human research ethics : JERHRE, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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.
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
8 citing papers in PubMed.
- Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results.The Journal of pediatrics · 2023Article
- Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues.Frontiers in medicine · 2021Review
- Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2020Article
- Decisional conflict among adolescents and parents making decisions about genomic sequencing results.Clinical genetics · 2020Article
- Challenges to informed consent for exome sequencing: A best-worst scaling experiment.Journal of genetic counseling · 2019Article
- Involving Youth With a Chronic Illness in Decision-making: Highlighting the Role of Providers.Pediatrics · 2018Article
- A pilot study of observed physician-parent-child communication and child satisfaction in a gastroenterology clinic.Patient preference and adherence · 2018Article
- How do providers discuss the results of pediatric exome sequencing with families?Personalized medicine · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children's opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.
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What OpenQuestion holds
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.