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

被引:7
作者
Coors, Marilyn E. [1 ]
Raymond, Kristen M. [2 ]
McWilliams, Shannon K. [2 ]
Hopfer, Christian J. [2 ]
Mikulich-Gilbertson, Susan K. [2 ]
机构
[1] Univ Colorado, Ctr Bioeth & Humanities, Dept Psychiat, Aurora, CO 80045 USA
[2] Univ Colorado, Dept Psychiat, Div Subst Dependence, Aurora, CO 80045 USA
关键词
adolescents; biobank; genomic addiction research; incidental results; re-contact; return of individual research results; INCIDENTAL FINDINGS; GENETIC RESEARCH; PARTICIPANTS; PARENTS; ATTITUDES; CHILDREN; COHORT; RECOMMENDATIONS; EXPECTATIONS; PREFERENCES;
D O I
10.1097/YPG.0000000000000083
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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. Copyright (C) 2015 Wolters Kluwer Health, Inc. All rights reserved.
引用
收藏
页码:127 / 130
页数:4
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