ArticleBMC medical ethics2014
The best interests of the child and the return of results in genetic research: international comparative perspectives.
Article in BMC medical ethics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed.
- Ethical and clinical challenges in managing low-penetrance CNVs: insights from Portuguese clinical geneticists.Frontiers in genetics · 2026Article
- Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study.European journal of human genetics : EJHG · 2024Article
- The Moral Foundations of Child Health and Social Policies: A Critical Interpretive Synthesis.Children (Basel, Switzerland) · 2021Article
- Ethical Issues in Care and Treatment of Neuronal Ceroid Lipofuscinoses (NCL)-A Personal View.Frontiers in neurology · 2021Review
- Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.Frontiers in genetics · 2021Article
- Genetic Counseling and Genome Sequencing in Pediatric Rare Disease.Cold Spring Harbor perspectives in medicine · 2020Review
- Challenges and strategies proposed by genetic health professionals to assist with family communication.European journal of human genetics : EJHG · 2019Article
- Points-to-consider on the return of results in epigenetic research.Genome medicine · 2019Review
- Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.Genetic testing and molecular biomarkers · 2017Article
- DECIDE: a Decision Support Tool to Facilitate Parents' Choices Regarding Genome-Wide Sequencing.Journal of genetic counseling · 2016Article
- Whole Genome Sequencing as a Genetic Test for Autism Spectrum Disorder: From Bench to Bedside and then Back Again.Journal of the Canadian Academy of Child and Adolescent Psychiatry = Journal de l'Academie canadienne de psychiatrie de l'enfant et de l'adolescent · 2016Article
- Article
- Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice.Pediatrics · 2015Article
- Return of genetic testing results in the era of whole-genome sequencing.Nature reviews. Genetics · 2015Review
- Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
backgroundPaediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research. DISCUSSION: A comparative review of international, regional and national documents on the return of research results reveals that there is a dearth of normative documents in the paediatric context. The best interests of the child framework is increasingly complicated by a growing appreciation of pediatric autonomy and the development thereof; parental rights (particularly when parents are affected by the genomic information of their children); and the right not to know. SUMMARY: This comparative analysis reveals that policy-makers and legislators have responded to the above challenges in different ways. Nevertheless, in Europe as well as in Canada, there is an emerging trend towards making the return of certain results mandatory in the paediatric context, should this course of action prove to be in the best interests of the child.
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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.