Personalized assent for pediatric biobanks

BMC Medical Ethics 2016 17:59
Authors: Noor A. A. Giesbertz,Karen Melham, Jane Kaye, Johannes J. M. van Delden, Annelien L. Bredenoord
“Pediatric biobanking is considered important for generating biomedical knowledge and improving (pediatric) health care. However, the inclusion of children’s samples in biobanks involves specific ethical issues. One of the main concerns is how to appropriately engage children in the consent procedure. We suggest that children should be involved through a personalized assent procedure, which means that both the content and the process of assent are adjusted to the individual child. In this paper we provide guidance on how to put personalized assent into pediatric biobanking practice and consider both the content and process of personalized assent. In the discussion we argue that the assent procedure itself is formative. Investing in the procedure should be a requirement for pediatric biobank research.”
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