Article
The development of a preference-setting model for the return of individual genomic research results.
Journal of empirical research on human research ethics : JERHRE - 1 Apr 2015
Bacon Phoebe L, Harris Erin D, Ziniel Sonja I, Savage Sarah K, Weitzman Elissa R, Green Robert C, Huntington Noelle L, Holm Ingrid A
Abstract excerpt
Understanding participants' preferences for the return of individual research results (IRR) in genomic research may allow for the implementation of more beneficial result disclosure methods. We tested four preference-setting models through cognitive interviews of parents to explore how parents conceptualize the process of setting preferences and which disease characteristics they believe to be most important when...
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