ArticleThe Journal of pediatrics2009
Pediatric biobanks: approaching informed consent for continuing research after children grow up.
Article in The Journal of pediatrics, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 2 of them syntheses 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
36 citing papers in PubMed, 2 syntheses or guidelines pooled it, 69 citations in OpenAlex.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.PloS one · 2014Pooled it
- Paediatric biobanking in the era of precision medicine: ethical, regulatory, and scientific challenges from childhood to adulthood.European journal of pediatrics · 2026Review
- Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026Article
- Delta-S-Cys-Albumin as a Marker of Pediatric Biospecimen Integrity.Biopreservation and biobanking · 2024Article
- Pediatric biobanks to enhance clinical and translational research for children.European journal of pediatrics · 2023Review
- Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022Article
- Adolescent Assent and Reconsent for Biobanking: Recent Developments and Emerging Ethical Issues.Frontiers in medicine · 2021Review
- Ethical and deontological aspects of pediatric biobanks: the situation in Italy.Cell and tissue banking · 2020Article
- Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.Journal of medical Internet research · 2020Article
- Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.American journal of kidney diseases : the official journal of the National Kidney Foundation · 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
- Paediatric biobanking: Dutch experts reflecting on appropriate legal standards for practice.European journal of pediatrics · 2017Review
- Conducting a large, multi-site survey about patients' views on broad consent: challenges and solutions.BMC medical research methodology · 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
- A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- When Children Become Adults: Should Biobanks Re-Contact?PLoS medicine · 2016Review
- Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations.Journal of personalized medicine · 2016Article
- Parental perspectives on consent for participation in large-scale, non-biological data repositories.Life sciences, society and policy · 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
4 authors at 4 institutions in 1 country.
Funding
Abstract
objectiveProposals for pediatric biobanks have prompted questions of whether parental permission is sufficient to continue to use biological samples and data after the children become adults. The objective of this study was to examine adults' attitudes about continued research with their pediatric samples/data, particularly when they could not be located to provide consent. STUDY
designTelephone interviews were conducted with 1186 patients from 5 academic medical centers by using a hypothetical scenario.
resultsMost respondents, 799 (67%), would not be concerned about the use of their sample/data after they reached adulthood. Those respondents who were concerned were more likely to be more private about their medical records, less trusting of medical researchers, or African-American. A total of 543 respondents (46%) believed their consent should be obtained to continue using their sample/data for research. Of these, 407 respondents (75%) would be at least moderately willing to give consent, when asked. Of the 1186 respondents, 310 (26%) would not want researchers to use their sample/data when they could not be located to ask for consent.
conclusionThe data are consistent with the normative view that when feasible, adults should be asked for consent for continued research on their data collected during childhood, but it is generally acceptable to continue to conduct research when adults cannot be located. Further public engagement may help determine how best to balance the potential social value of continued research using pediatric samples/data and the expectations for explicit consent expressed by a minority of respondents that may reflect concerns about privacy and trust.
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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.