ArticleEuropean journal of human genetics : EJHG2013
Developing a policy for paediatric biobanks: principles for good practice.
Article in European journal of human genetics : EJHG, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 1 of them a synthesis that pooled 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.
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
37 citing papers in PubMed, 1 synthesis or guideline pooled it.
- International policies guiding the selection, analysis, and clinical management of secondary findings from genomic sequencing: A systematic review.American journal of human genetics · 2024Pooled it
- Biorepositories For Global Rare Disease Research: A Narrative Review.Current rheumatology reports · 2025Review
- Delta-S-Cys-Albumin as a Marker of Pediatric Biospecimen Integrity.Biopreservation and biobanking · 2024Article
- Determining the state of guidance on pediatric biobanking for researchers, HRECS, and families: Regulatory mapping of international guidance.European journal of pediatrics · 2024Review
- Barriers to enrollment in a pediatric critical care biorepository.Pediatric research · 2023Article
- Reconsenting paediatric research participants for use of identifying data.Journal of medical ethics · 2023Article
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022Article
- Anticipatory Waivers of Consent for Pediatric Biobanking.Ethics & human research · 2019Article
- A novel metadata management model to capture consent for record linkage in longitudinal research studies.Informatics for health & social care · 2019Article
- A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research.Frontiers in genetics · 2019Article
- 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
- Equitable Participation in Biobanks: The Risks and Benefits of a "Dynamic Consent" Approach.Frontiers in public health · 2018Article
- Preferences for the Return of Individual Results From Research on Pediatric Biobank Samples.Journal of empirical research on human research ethics : JERHRE · 2017Article
- Paediatric biobanking: Dutch experts reflecting on appropriate legal standards for practice.European journal of pediatrics · 2017Review
- Personalized assent for pediatric biobanks.BMC medical ethics · 2016Article
- Next-Generation Sequencing and the Return of Results.Cold Spring Harbor perspectives in medicine · 2016Review
- 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The participation of minors in biobank research can offer great benefits for science and health care. However, as minors are a vulnerable population they are also in need of adequate protective measures when they are enrolled in research. Research using biobanked biological samples from children poses additional ethical issues to those raised by research using adult biobanks. For example, small children have only limited capacity, if any, to understand the meaning and implications of the research and to give a documented agreement to it. Older minors are gradually acquiring this capacity. We describe principles for good practice related to the inclusion of minors in biobank research, focusing on issues related to benefits and subsidiarity, consent, proportionality and return of results. Some of these issues are currently heavily debated, and we conclude by providing principles for good practice for policy makers of biobanks, researchers and anyone involved in dealing with stored tissue samples from children. Actual implementation of the principles will vary according to different jurisdictions.
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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.