ArticleAJOB primary research2012
Parental Perspectives on a Pediatric Human Non-Subjects Biobank.
Article in AJOB primary research, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
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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
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 26 citations in OpenAlex.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?Journal of empirical research on human research ethics : JERHRE · 2018Trial
- Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.AJOB empirical bioethicsTrial
- Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure.Social sciences & humanities open · 2026Article
- Comparison of factors influencing the willingness to donate biospecimens among guardians of children with cancer and adult cancer patients.Cancer medicine · 2022Article
- 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
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Article
- Biobanking in the Pediatric Critical Care Setting: Adolescent/Young Adult Perspectives.Journal of empirical research on human research ethics : JERHRE · 2018Article
- When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority.The Journal of pediatrics · 2016Article
- Parental perspectives on consent for participation in large-scale, non-biological data repositories.Life sciences, society and policy · 2016Article
- Broad Consent for Research With Biological Samples: Workshop Conclusions.The American journal of bioethics : AJOB · 2015Article
- Secondary use of clinical data: the Vanderbilt approach.Journal of biomedical informatics · 2014Article
- Biobanks and electronic medical records: enabling cost-effective research.Science translational medicine · 2014Article
- Ethical and practical challenges to studying patients who opt out of large-scale biorepository research.Journal of the American Medical Informatics Association : JAMIA · 2013Article
- Public perspectives on biospecimen procurement: what biorepositories should consider.Biopreservation and biobanking · 2013Article
- Inclusion of pediatric samples in an opt-out biorepository linking DNA to de-identified medical records: pediatric BioVU.Clinical pharmacology and therapeutics · 2013Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
Abstract
backgroundGenomic biorepositories will be important tools to help unravel the effect of common genetic variants on risk for common pediatric diseases. Our objective was to explore how parents would respond to the inclusion of children in an opt-out model biobank.
methodsWe conducted semi-structured interviews with parents in hospital-based pediatric clinics. Participants responded to a description of a biorepository already collecting samples from adults. Two coders independently analyzed and coded interviews using framework analysis. Opt-out forms were later piloted in a clinic area. Parental opt-out choices were recorded electronically, with opt-out rates reported here.
resultsParents strongly supported medical research in general and expressed a high level of trust that Vanderbilt University would keep their child's medical information private. Parents were more likely to allow their child's sample to be included in the biorepository than to allow their child to participate in a hypothetical study that would not help or harm their child, but might help other children. Only a minority were able to volunteer a concern raised by the description of the biobank. The opt-out rate was initially high compared with the opt-out rate in the adult biorepository, but after the first week decreased to near the baseline in adult clinics.
conclusionParents in our study generally support an opt-out model biobank in children. Most would allow their own child's sample to be included. Institutions seeking to build pediatric biobanks may consider the human non-subjects model as a viable alternative to traditional human-subjects biobanks.
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.