Pediatric biobanking complicates this picture in interesting ways. In one panel [E-2], Ellen Clayton argued that pediatric biobanks are “Not Just Biobanks for Little Adults” — indeed, that the return of results for children raises unique implications that have not been extensively discussed. In the same panel, Holly Tabor used several examples from whole exome sequencing studies to illustrate the challenges that arise in biobanking research with biospecimens from children, including: the right not to know; results that may be clinically actionable for family members but not necessarily for the child research subject; and the dynamic nature of the meaning of genetic information over time. A second panel that addressed pediatric biobanking included a paper on “The Gene Partnership: Implementing the Informed Cohort in a Pediatric Setting” [B-4, Clinton], which described an innovative way to include parents and children in ongoing consent and engagement of families: in partnership they decide (1) how much information they would like to share about a particular topic and (2) what information they would like to receive from the Gene Partnership.
