SynthesisEuropean journal of human genetics : EJHG2009
Biological sample collections from minors for genetic research: a systematic review of guidelines and position papers.
Synthesis in European journal of human genetics : EJHG, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 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
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled it
- Reconsenting paediatric research participants for use of identifying data.Journal of medical ethics · 2023Article
- Privacy practices using genetic data from cell-free DNA aneuploidy screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- Biobanks-A Platform for Scientific and Biomedical Research.Diagnostics (Basel, Switzerland) · 2020Review
- Reconsidering the Need for Reconsent at 18.Pediatrics · 2018Review
- Potential Value of Qiagen and PrepIT•MAX Kits in Extraction of Mycobacterial DNA From Presumptive Tuberculosis Archived Formalin-Fixed Paraffin-Embedded Tissues.The East African health research journal · 2018Article
- Personalized assent for pediatric biobanks.BMC medical ethics · 2016Article
- National Human Research Ethics: A Preliminary Comparative Case Study of Germany, Great Britain, Romania, and Sweden.Ethics & behavior · 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
- Consent procedures in pediatric biobanks.European journal of human genetics : EJHG · 2015Article
- Practical guidance on informed consent for pediatric participants in a biorepository.Mayo Clinic proceedings · 2014Article
- Clarifying assent in pediatric research.European journal of human genetics : EJHG · 2014Article
- Blending genetics and sociocultural historical inquiry: ethics, culture, and human subjects protection in international cross cultural research.The Yale journal of biology and medicine · 2013Article
- Developing a policy for paediatric biobanks: principles for good practice.European journal of human genetics : EJHG · 2013Article
- Attitudes of African-American parents about biobank participation and return of results for themselves and their children.Journal of medical ethics · 2012Article
- Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment.Journal of empirical research on human research ethics : JERHRE · 2011Article
- Are the kids really all right? Direct-to-consumer genetic testing in children: are company policies clashing with professional norms?European journal of human genetics : EJHG · 2011Article
- Children, biobanks and the scope of parental consent.European journal of human genetics : EJHG · 2011Article
- Why parents consent to their children's participation in genetic research: A study of parental decision making.Indian journal of medical ethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Stored tissue samples are an important resource for epidemiological genetic research. Genetic research on biological material from minors can yield valuable information on the development and genesis of early-onset genetic disorders and the early interaction of environmental and genetic factors. The use of such tissue raises some specific ethical and governance questions, which are not completely covered by the discussion on biological materials from adults. We have retrieved 29 guidelines and position papers pertaining to the storage and use of biological tissue samples for genetic research, originating from 27 different organizations. Five documents have an international scope, three have an European scope and 21 have a national scope. We discovered that 11 of these documents did not contain a section on biological materials from minors. The content of the remaining 18 documents was categorized according to four themes: consent, principles of non-therapeutic research on vulnerable populations, ethics committee approval and difference between anonymous and identifiable samples. We found out that these themes are not consistently mentioned by each document, but that documents discussing the same themes were mostly in agreement with their recommendations. However, a systematic reflection on the ethical and policy issues arising from the participation of minors in biobank research is missing.
Indexed as
Identifiers
What 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.