Evidence map›Paper›PMID 23756442›Full record

ArticleEuropean journal of human genetics : EJHG2014

Clarifying assent in pediatric research.

Noor A A Giesbertz, Annelien L Bredenoord, Johannes J M van Delden

Abstract read
In one paragraph

Article in European journal of human genetics : EJHG, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
28citing papers in PubMed, 3 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

28 citing papers in PubMed, 3 syntheses or guidelines pooled it.

  1. Pooled it
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  11. Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022
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  17. Parental Perceptions About Informed Consent/Assent in Pediatric Research in Jordan.Journal of empirical research on human research ethics : JERHRE · 2017
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

3 authors.

Noor A A GiesbertzDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
Annelien L BredenoordDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.
Johannes J M van DeldenDepartment of Medical Humanities, Julius Center, University Medical Center Utrecht, Utrecht, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Assent is a relatively young term in research ethics, but became an often mentioned ethical requirement in current pediatric research guidelines. Also, the European Society of Human Genetics considers assent an important condition for the inclusion of children in biobanks. However, although many emphasize the importance of assent, few explain how they understand the concept and few have elaborated on the underlying grounds. In this paper, we will discuss the different underlying ethical principles of assent. In the first category, assent appears to be derived from informed consent. This understanding is grounded in respect for autonomy and protection against harm. We conclude that this interpretation of assent is not of added value as a majority of children cannot be considered competent to make autonomous decisions. In addition, other safeguards are more appropriate to protect children against harm. The grounds from the second category can be classified as engagement grounds. These grounds do justice to the specifics of childhood and are of added value. Furthermore, we argue that it follows that both the content and the process of assent should be adjusted to the individual child. This can be referred to as personalized assent. Personalized assent is an appeal to the moral responsibility and integrity of the researcher.

Indexed as

Ethics, ResearchChildDecision MakingGenetics, MedicalHumansInformed ConsentPatient ParticipationPediatrics

Identifiers

PMID23756442
PMCPMC3895639

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.