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Per Med. 2016 Nov;13(6):597-607. doi: 10.2217/pme-2016-0028. Epub 2016 Oct 13.

Ethical and legal considerations for pediatric biobank consent: current and future perspectives.

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Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA.
Department of Bioethics, Case Western Reserve University, Cleveland, OH, USA.


Innovations in laboratory and information technologies continue to drive the expansion of pediatric biorepository research, with collections of biosamples and data continuing to grow in scale and scope. In this review, we examine the trajectory of recent developments in ethical and legal scholarship on consent to pediatric biorepository research. We focus, in particular, on issues that are likely to grow in importance in coming years, either because significant controversies remain or because they represent trends that are likely to continue into the future. Of particular interest is the evolving conception of consent as a process, the trend toward increased participant engagement and other challenges likely to raise thorny new issues in this field in the decade ahead.


adolescent assent; biorepository research; dynamic consent; informed consent; parental permission; participant engagement; pediatrics


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