ReviewHuman genetics2011
Children and biobanks: a review of the ethical and legal discussion.
Review in Human genetics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 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
16 citing papers in PubMed.
- Using a cartoon questionnaire to improve consent process in children: a randomized controlled survey.Pediatric research · 2021Trial
- Attitudes and awareness in autonomous decision on medical treatment or inclusion in clinical trials amongst Slovenian adolescents: an online survey.BMC medical education · 2024Article
- Biobanking and consenting to research: a qualitative thematic analysis of young people's perspectives in the North East of England.BMC medical ethics · 2023Article
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- "Here comes Bio-me": An analysis of a biobank campaign targeted at children.Public understanding of science (Bristol, England) · 2021Article
- GenoPheno: cataloging large-scale phenotypic and next-generation sequencing data within human datasets.Briefings in bioinformatics · 2021Review
- Recommendations for the development of Egyptian human biobanking ethical guidelines.Wellcome open research · 2021Article
- 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
- Beyond Genes: Re-Identifiability of Proteomic Data and Its Implications for Personalized Medicine.Genes · 2019Review
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Pediatric Issues in Return of Results and Incidental Findings: Weighing Autonomy and Best Interests.Genetic testing and molecular biomarkers · 2017Article
- 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research.European journal of human genetics : EJHG · 2016Article
- Regulating biobanking with children's tissue: a legal analysis and the experts' view.European journal of human genetics : EJHG · 2016Article
- Return of individual research results and incidental findings: facing the challenges of translational science.Annual review of genomics and human genetics · 2013Review
- Specimen collection for induced pluripotent stem cell research: harmonizing the approach to informed consent.Stem cells translational medicine · 2012Article
- The art and science of biobanking.Human genetics · 2011Article
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
The use of tissue samples from children is vital to genetic research. Collections of such tissue, in so-called biobanks, can take the form of large-scale prospective cohort studies or disease-specific studies using tissue of children with that specific disease. Collections of samples gathered in a diagnostics context, such as blood spot cards, can also be used for genetic research. Research on stored tissue samples from children poses ethical questions that are different from those posed by the use of samples from adults. Also, the ethical questions raised by the participation of children in biobanks are not analogous to those raised by the participation of children in clinical trials. In this review we first give an overview of the international ethical guidelines and legal regulations concerning biobanking and minors. Next, we review the different themes that occur in the ethical literature on this subject. Specifically we focus on questions of risk and benefit, consent and assent and the return of individual results. We also discuss the concept of solidarity, which is a relatively new concept in the context of children and biomedical research. To conclude, we discuss the gaps and questions raised by the review.
Indexed as
Identifiers
21660506What OpenQuestion holds
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.