ArticleHuman genomics2018
Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.
Article in Human genomics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.
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Who cites it
10 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Ethical Development of Digital Phenotyping Tools for Mental Health Applications: Delphi Study.JMIR mHealth and uHealth · 2021Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review.Human genomics · 2021Review
- Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Attitudes toward the right to autonomous decision-making in psychiatric genetic testing: Controversial and context-dependent.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
- Psychiatric genetics researchers' views on offering return of results to individual participants.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2019Article
- Rethinking the "open future" argument against predictive genetic testing of children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Ethical Challenges of Germline Genetic Enhancement.Frontiers in genetics · 2019Review
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundGenomic sequencing of children in research raises complex ethical issues. This study aims to gain more knowledge on the attitudes towards the inclusion of children as research subjects in genomic research and towards the disclosure of pertinent and incidental findings to the parents and the child.
methodsQualitative data were collected from interviews with a wide range of informants: experts engaged in genomic research, clinical geneticists, persons with mental disorders, relatives, and blood donors. Quantitative data were collected from a cross-sectional web-based survey among 1227 parents and 1406 non-parents who were potential stakeholders in psychiatric genomic research.
resultsParticipants generally expressed positive views on children's participation in genomic research. The informants in the qualitative interviews highlighted the age of the child as a critical aspect when disclosing genetic information. Other important aspects were the child's right to an autonomous choice, the emotional burden of knowing imposed on both the child and the parents, and the possibility of receiving beneficial clinical information regarding the future health of the child. Nevertheless, there was no consensus whether the parent or the child should receive the findings. A majority of survey stakeholders agreed that children should be able to participate in genomic research. The majority agreed that both pertinent and incidental findings should be returned to the parents and to the child when of legal age. Having children does not affect the stakeholder's attitudes towards the inclusion of children as research subjects in genomic research.
conclusionOur findings illustrate that both the child's right to autonomy and the parents' interest to be informed are important factors that are found valuable by the participants. In future guidelines governing children as subjects in genomic research, it would thus be essential to incorporate the child's right to an open future, including the right to receive information on adult-onset genetic disorders.
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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.