Nowhere are these ethical and practical questions more contentious than in pediatric biobanking. Research on the policies and practices of organizations banking pediatric samples has revealed a wide range of decisions about the return of research results and incidental findings, study withdrawal, consent/assent, and re-consent of minors when they reach adulthood [B-4]. Pediatric biobanks must consider the unique features of consent in the pediatric context, and address the amount of influence parents should exert to encourage children’s participation. The disclosure of information during consent and of results discovered during research also present challenges, especially because such information may have equal or even greater implications for parents and other genetic relatives than for the pediatric donor [E-2]. Equally thorny issues arise in the context of banking umbilical cord blood and residual newborn screening samples for future research, since both of these types of samples are collected immediately after childbirth, a context in which informed consent is difficult at best [B-4]. As several panels discussed [B-4; D-4], recent legal battles in Texas and Minnesota have highlighted the “gap between law and ethics”
