ArticleEuropean journal of human genetics : EJHG2011
Children, biobanks and the scope of parental consent.
Article in European journal of human genetics : EJHG, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers.
What it found
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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.
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Who cites it
29 citing papers in PubMed.
- The future of pediatric gene therapy: CRISPR-Cas9, AI, and personalized medicine.Pediatric research · 2026Review
- Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey.BMC medical education · 2024Article
- Shared decision-making in adolescent healthcare: a literature review of ethical considerations.European journal of pediatrics · 2024Review
- Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.European journal of pediatrics · 2024Review
- Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.BMC medical ethics · 2023Article
- Reconsenting paediatric research participants for use of identifying data.Journal of medical ethics · 2023Article
- Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance.Life sciences, society and policy · 2021Review
- Willingness of women to participate in obstetrical and pediatric research involving biobanks.Journal of community genetics · 2020Article
- Researchers' Perspectives on Informed Consent and Ethical Review of Biobank Research in South Africa: A Cross-Sectional Study.Journal of empirical research on human research ethics : JERHRE · 2019Article
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Reconsidering the Need for Reconsent at 18.Pediatrics · 2018Review
- Attitudes of stakeholders in psychiatry towards the inclusion of children in genomic research.Human genomics · 2018Article
- Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.Journal of empirical research on human research ethics : JERHRE · 2017Article
- Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.Genetic testing and molecular biomarkers · 2017Article
- Paediatric biobanking: Dutch experts reflecting on appropriate legal standards for practice.European journal of pediatrics · 2017Review
- Sharing health-related data: a privacy test?NPJ genomic medicine · 2016Article
- Ethics of children's participation in a Saudi biobank: an exploratory survey.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- When Children Become Adults: Should Biobanks Re-Contact?PLoS medicine · 2016Review
- Parental perspectives on consent for participation in large-scale, non-biological data repositories.Life sciences, society and policy · 2016Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The use of stored tissue samples from children for genetic research raises specific ethical questions that are not all analogous to those raised when adult participants are concerned. These include issues with regard to consent, as it is typically a parent who consents to the use of samples from children. In this paper, we discuss the scope of parental consent. This scope has a temporal dimension and one related to the content of consent. It is not questioned that the temporal scope of parental consent is limited and that young adults have the right to decide on the fate of their samples when they reach the age of maturity. With regard to the content of consent, the question remains whether parents are allowed to give full broad consent to any possible future research on the samples of their children. We argue that they should not be allowed to do so, based on two premises. First, it is generally acknowledged that children have a right to express their own values and that they should be given the opportunity to develop their own autonomy as they grow older. Second, research and science are not completely value-free and some types of research may be more sensitive than other types. Children should be given the opportunity to express their values also in this respect.
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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.