Adolescents with substance use disorder and assent/consent: Empirical data on understanding biobank risks in genomic research.

ABSTRACT:

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.

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 par

SUBMITTER: Coors ME 

PROVIDER: S-EPMC4745974 | biostudies-literature | 2016 Feb

REPOSITORIES: biostudies-literature