Biobank Awareness Changes Opinions of Adolescents and Parents on Participation and Practices.

Abstract

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.