A qualitative study of adolescents' understanding of biobanks and their attitudes toward participation, re-contact, and data sharing.

Murad AM1,2, Myers MF1,2, Thompson SD2,3, Fisher R1,2, Antommaria AH2,4.

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Abstract

While biobanks have become more prevalent, little is known about adolescents' views of key governance issues. We conducted semi-structured interviews with adolescents between 15 and 17 years old to solicit their views. All interviews were audiotaped and transcribed. Two investigators coded the transcripts and resolved any discrepancies through consensus. We conducted 18 interviews before reaching data saturation. Four participants (22%) had previously heard of a biobank. Many participants had misunderstandings about biobanks, some of which persisted after education. Participants believed that enrolling in a biobank would benefit others through scientific research. Many study participants were unable to identify risks of biobank participation. Thirteen participants (72%) were willing to enroll in a biobank and only one (6%) initially was not. Participants believed that if they were unable to provide assent when enrolled, then they should be re-contacted at the age of majority and their data should not be shared until that time. Participants emphasized the importance of being aware of their enrollment and the possibility of disagreeing with their parents. Participants' misunderstanding of biobanks suggests that assent may not be adequately informed without additional education. While adolescents had positive attitudes toward biobanks, they emphasized the importance of awareness of and involvement in the decision to enroll.