TY  - JOUR
PY  - 2015//
TI  - Adolescents with substance use disorder and assent/consent: empirical data on understanding biobank risks in genomic research
JO  - Drug and alcohol dependence
A1  - Coors, Marilyn E.
A1  - Raymond, Kristen M.
A1  - Hopfer, Christian Jean
A1  - Sakai, Joseph
A1  - McWilliams, Shannon K.
A1  - Young, Susan
A1  - Mikulich-Gilbertson, Susan K.
SP  - 267
EP  - 271
VL  - 159
IS  - 
N2  - OBJECTIVE: This study assessed whether a customized disclosure form increases understanding for adolescents with substance use disorder (SUD) when compared to a standard disclosure for genomic addiction research. <br><br>METHOD: We gathered empirical data from adolescents with SUD, family members, former patients followed since adolescence, and community counterparts. The study was conducted in four stages. Stage 1: national experts (n=32) identified current, future, speculative risks of broadly shared biobanks. Stage 2 assessed participants' (n=181) understanding of current risks as a prerequisite for rating saliency of risks via a Visual Analog Scale. Salient risks were incorporated into a customized disclosure form. Stage 3 compared the understanding of customized disclosure by participants (n=165) at baseline; all groups scored comparably. Stage 4 conducted a direct comparison of the standard disclosure to standard disclosure plus customized disclosure (n=195). Independent t-tests compared understanding in those receiving the standard disclosure to standard disclosure plus customized disclosure within 6 groups. <br><br>RESULTS: The customized disclosure significantly improved understanding in adolescent patients (p=0.002) and parents of patients (p=0.006) to the level of their counterparts. The customized disclosure also significantly improved understanding in siblings of former patients (p=0.034). Understanding of standard disclosure in patients versus controls was significantly different (p=0.005). The groups receiving the customized disclosure scored significantly higher. Understanding of the standard disclosure plus customized disclosure in patients versus controls was not significantly different. <br><br>CONCLUSION: Adolescents with addictions understand the risks of participating in genomic addiction research as well as their community counterparts when information provided is salient to them.<p />  <p>Language: en</p>
LA  - en
SN  - 0376-8716
UR  - http://dx.doi.org/10.1016/j.drugalcdep.2015.12.006
ID  - ref1
ER  -