title: Paediatric biobanks: what makes them so unique?
abstract: Paediatric biobanks store and organise the biological material of children. They are an invaluable resource for the study of the development, health and behaviour of children. International norms for the management of adult biobanks exist, but paediatric biobanks require distinct policies to account for the needs of children, their general incapacity, and their intellectual development throughout the life of the biobank. Because of their particular nature we revisit the issues of consent, the return of research results, and privacy, and discuss how each could be modulated in the paediatric context. We recognize that such modifications entail further financial and logistical complications but maintain that it is essential that paediatric biobanks consider these issues and adapt their biobanks management policies accordingly, rather than extrapolate the current adult-based norms and jeopardise the rights of child participants.
authors.affiliation: FRSQ, Quebec, Canada.
authors.forename: Julie
authors.initials: J
authors.lastname: Samuël
authors.forename: Bartha M
authors.initials: BM
authors.lastname: Knoppers
authors.forename: Denise
authors.initials: D
authors.lastname: Avard
mesh_terms: D000293:Adolescent; D018070:Biological Specimen Banks / Q000941:ethics*; D002648:Child; D003219:Confidentiality; D006801:Humans; D007258:Informed Consent; D033282:Parental Consent; D010290:Parents; D010372:Pediatrics