When Children Become Adults: Should Biobanks Re-Contact?

Abstract

At the moment, there are many collections of human biological samples stored for medical—scientific research purposes that include samples from children [1]. These pediatric biobanks facilitate research, which is considered important for improving (pediatric) health care by generating biomedical knowledge [2,3]. However, pediatric biobank research gives rise to specific ethical issues. At the time of inclusion, many children cannot, or are legally not allowed to, consent for themselves, and typically parental permission is required. Samples may still be stored and used by biobanks when children become autonomous adults. The question arises whether children should be re-contacted to obtain their own consent, or give the opportunity to withdraw their samples, when they reach adulthood. Often, this is referred to as re-consent [4–6]. This term, however, is a misnomer, since the child has not consented in the first place. We therefore use the terms re-contact and consent. In practice, biobanks have adopted different approaches to re-contact and consent. A study on six birth cohort studies found that only the cohorts that follow children into adolescence or past childhood recognize a need to seek consent as the child matures [7], or biobanks attribute a role to parents/guardians to inform their child about the tissue that has been stored and used for research [8]. Furthermore, our international case study on consent procedures in pediatric biobanking [9] shows that regulation plays a key role when pediatric biobanks design their consent procedures. However, major guidelines do not provide sufficient guidance on re-contact and consent [10–12], and there is only very limited literature that analyses the issue in depth [4–6,13]. Given the fact that biobanks already include pediatric samples, and in light of the rapid developments in biobank research, it is important to address the issue of re-contact and consent now. In this paper, we discuss the arguments in favor and against re-contacting participants at maturity and examine different re-contact policies that can be considered.