Opinions of Adolescents and Parents About Pediatric Biobanking

Abstract

Purpose: A biobank is defined as "a facility for the collection, preservation, storage and supply of biological samples and associated data, which follows standardized operating procedures and provides material for scientific and clinical use." The practice of biobanking must consider the best interests of participants, which is especially complicated in the pediatric setting, where parents or guardians are responsible for consent of their children. Age of participant assent, consent, and reconsent at the age of majority are some of the issues which need to be addressed.

Methods: We conducted an exploratory survey of four cohorts: (1) adolescents aged 14-18 years treated at British Columbia Children's Hospital, Vancouver, British Columbia, Canada, in the Division of Oncology, Cardiology, or Orthopedics. (2) Parents of the adolescents described in (1). (3) Adolescents aged 14-18 years from high schools in Vancouver, British Columbia, Canada. (4) Parents of the adolescents described in (3).

Results: We show that clinic participants rated a higher willingness to donate specimens versus school participants. Furthermore, clinic participants felt assent was more important and parental consent alone was insufficient. The median suggested age for assent was 14.5 years among adolescent responses and 16 years from parental responses of both groups. School parents were the most conservative in their responses toward their child's participation in a biobank.

Conclusions: Adolescents, who were seen in clinics and their parents, had a more altruistic approach toward pediatric biobanking than those surveyed in the school setting. Additionally, parents are less comfortable making decisions regarding biobanking than their adolescent children.

Keywords: Adolescent; Assent; Biobank; Biospecimen; Clinic; Consent; Opinion; Parent; Pediatric; Reconsent.