Journal
PERSONALIZED MEDICINE
Volume 8, Issue 1, Pages 71-79Publisher
FUTURE MEDICINE LTD
DOI: 10.2217/PME.10.70
Keywords
biobanking; data sharing; genomic research; pediatric research; research regulation; responsible conduct of research; return of research results
Categories
Funding
- Vanderbilt Genome-Electronic Records Project
- NIH/NHGRI [5U01HG004603-03]
- Vanderbilt Institute for Clinical and Translational Research (VICTR)
- NCRR/NIH [UL1 RR024975]
- NATIONAL CENTER FOR RESEARCH RESOURCES [TL1RR024978, UL1RR024975, KL2RR024977] Funding Source: NIH RePORTER
- NATIONAL HUMAN GENOME RESEARCH INSTITUTE [U01HG004603] Funding Source: NIH RePORTER
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Pediatric biobanks are an indispensible resource for the research that will be needed to bring advances in personalized medicine into pediatric medical care. Investigators developing pediatric biobanks have struggled with the ethical and legal challenges that arise in pediatric research. This article explores how one biobank model, the 'human nonsubjects models', is able to respond to such common challenges as the role of the parent and the child in agreeing to research participation, reconsent at the age of majority, data sharing and return of research results. Although this approach does not involve formal informed consent, it is well-suited to pediatric biobanking owing to its potential to reduce risk to children through a combination of advanced deidentification techniques and extensive oversight.
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