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Adolescent perspectives on the return of individual results in genomic addiction research

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This study surveyed all adolescents who were enrolled in behavioral genomic research and provided DNA to a biobank, including 320 patients undergoing treatment for substance and conduct problems (SCPs) and 109 non-SCP controls. Participants selected from three options on the return of individual genomic results (RIR) and rated eight methods of re-contact. Most individuals with SCPs (77.8%) and non-SCP controls (72.5%) wanted RIR involving health or behavioral implications. The majority of individuals with SCPs (67.2%) and non-SCP controls (69.7%) indicated that phone re-contact was ‘best’, with e-mail (22.5% SCPs, 33.9% non-SCPs) and social networking websites (21.3% SCPs, 20.2% non-SCPs) being viable options. These results suggest a layered approach for RIR: phone calls, followed by e-mails and a secure message to a social networking account. Data from this special and vulnerable population, which includes youth involved in the criminal justice system and substantial minority participation, bring an essential and missing perspective to the discussion of RIR.
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Keywords: adolescents; biobank; genomic addiction research; incidental results; re-contact; return of individual research results

Document Type: Research Article

Affiliations: 1: Department of Psychiatry, Center for Bioethics and Humanities 2: Department of Psychiatry, Division of Substance Dependence, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA

Publication date: June 1, 2015

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