ArticleEuropean journal of human genetics : EJHG2015
Consent procedures in pediatric biobanks.
Article in European journal of human genetics : EJHG, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 23 citations in OpenAlex.
- Biorepositories For Global Rare Disease Research: A Narrative Review.Current rheumatology reports · 2025Review
- Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.European journal of pediatrics · 2024Review
- Imaging biobanks: operational limits, medical-legal and ethical reflections.Frontiers in digital health · 2024Review
- Effects of preservation duration at 4 °C on the quality of RNA in rabbit blood specimens.PeerJ · 2020Article
- Aspects of Modern Biobank Activity - Comprehensive Review.Pathology oncology research : POR · 2018Review
- Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Personalized assent for pediatric biobanks.BMC medical ethics · 2016Article
- When Children Become Adults: Should Biobanks Re-Contact?PLoS medicine · 2016Review
- Regulating biobanking with children's tissue: a legal analysis and the experts' view.European journal of human genetics : EJHG · 2016Article
- Best Practices for Obtaining Genomic Consent in Pediatric Traumatic Brain Injury Research.Nursing researchArticle
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The inclusion of children's samples in biobanks brings forward specific ethical issues. Guidelines indicate that children should be involved in the consent procedure. It is, however, unclear how to allocate an appropriate role for children. Knowledge of current practice will be helpful in addressing this issue. Therefore, we conducted an international multiple-case study on the child's role in consent procedures in pediatric biobanks. Four biobanks were included: (1) LifeLines, (2) Prevention and Incidence of Asthma and Mite Allergy (PIAMA), (3) Young-HUNT3 and (4) the Oxford Radcliffe Biobank contribution to the Children's Cancer and Leukaemia Group tissue bank (ORB/CCLG). Four themes linked to the child's role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntariness of children to participate. We conclude that biobank characteristics influence the biobank's motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure, and the extent to which children are able to make voluntary decisions as part of the consent procedure. This insight is valuable when designing pediatric biobank governance.
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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.