RESUMEN
To evaluate barriers and facilitators of pediatric biobank participation, we studied whether increased awareness of participants about pediatric biobanking changes their opinions on biobanking practices and their willingness to participate in biobanks. Adolescents (14-18 years) in public schools and their parents were invited to participate in a survey either with or without viewing educational material about biobanking before completing the survey. Questions included willingness to donate, consenting practices and use of specimens. Surveys were administered. Nonparametric statistical tests (Mann-Whitney U) were used to test the significance of differences in Likert scale responses between participant groups. A total of 545 participants (219 adolescent and 176 parents with prior awareness about biobanking vs. 106 adolescents and 44 parents without) completed the survey. Participants who had participated in an educational session were more willing to donate compared to participants without this session under three different conditions: a left-over sample, an extra sample at the time of a medical procedure, and an extra procedure. Adolescents without prior awareness were significantly more willing to donate compared to their parents. Parents perceived the need for reconsent more important than children, although it was less important to educated parents versus noneducated parents. Age of assent was lower in the groups with prior awareness and ongoing use of specimens without reconsent was more permissible to these participants. In conclusion, prior awareness of biobanks may facilitate pediatric biobank participation.
RESUMEN
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.