Evidence map›Paper›PMID 32715320›Full record

ReviewEuropean child & adolescent psychiatry2021

Ethics of returning children's individual research findings: from principles to practice.

Gert-Jan Vanaken, Ilse Noens, Herbert Roeyers, Lotte van Esch, Petra Warreyn, Jean Steyaert, Kristien Hens

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In one paragraph

Review in European child & adolescent psychiatry, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

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

2 citing papers in PubMed.

  1. Article
  2. Article
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

7 authors.

Gert-Jan VanakenParenting and Special Education Research Unit, Faculty of Educational Sciences, KU Leuven, Leopold Vanderkelenstraat 32, 3000, Leuven, Belgium. gertjan.vanaken@kuleuven.be.ORCID http://orcid.org/0000-0002-3412-5675
Ilse NoensParenting and Special Education Research Unit, Faculty of Educational Sciences, KU Leuven, Leopold Vanderkelenstraat 32, 3000, Leuven, Belgium.
Herbert RoeyersResearch in Developmental Disorders Lab, Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium.
Lotte van EschParenting and Special Education Research Unit, Faculty of Educational Sciences, KU Leuven, Leopold Vanderkelenstraat 32, 3000, Leuven, Belgium.
Petra WarreynResearch in Developmental Disorders Lab, Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium.
Jean SteyaertLeuven Autism Research (LAuRes), Leuven, Belgium.
Kristien HensLeuven Autism Research (LAuRes), Leuven, Belgium.

Funding

European Research Council 804881Fonds Wetenschappelijk Onderzoek FWO-SBO S001517NKU Leuven BLOZ/17/019
6 · The paper itself

Abstract

Little ethical recommendations on returning children's individual research findings are available for researchers in behavioral sciences, especially when compared to genetic research. Anecdotic evidence suggests that since parents are often interested in their child's individual research findings, researchers tend to offer this information as a form of compensation for research participation. Despite good intentions, these practices are not without potential harmful consequences for children. We were confronted with these difficulties and with the paucity of available guidance on this topic, being involved in a longitudinal, infant development study, i.e. tracking infants at risk for autism (TIARA). First, we review current ethical recommendations and discuss their limitations in the light of the TIARA study. Second, we will suggest to revise these recommendations, by identifying and applying the relevant bioethical principles and concepts at hand. Third, as an example of practical implementation, the adopted 'return of research findings'-policy for the TIARA-study is presented. The principles and concepts we engage with are the ancillary care responsibilities of the researcher, non-maleficence and beneficence, the right to an open future of the child, and the avoidance of therapeutic misconception. Ultimately, we present the concrete return of research findings policy implemented in the TIARA-study. Here, we suggest restricting the systematic return of children's individual research findings to cases where findings are considered clinically significant and actionable for the child. We discuss the broader implications for designing and conducting research in behavioral sciences with children.

Indexed as

FamilyParentsChildChild DevelopmentHumansInfantResearch PersonnelAutismEthicsFeedbackIndividual research findings

Identifiers

What OpenQuestion holds

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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.