The development of a preference-setting model for the return of individual genomic research results

Journal of Empirical Research on Human Research Ethics : JERHRE
Phoebe L BaconIngrid A Holm

Abstract

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 deciding what results to receive on their child. Severity and preventability of a condition were highly influential in decision making and certain groups of research results were anticipated by participants to have negative psychological effects. These findings informed the development of an educational tool and preference-setting model that can be scaled for use in the return of IRR from large biobank studies.

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Citations

May 6, 2016·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Liam S Conway-PearsonIngrid A Holm
Aug 26, 2016·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Kyle B BrothersEllen Wright Clayton
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Feb 24, 2018·Journal of Empirical Research on Human Research Ethics : JERHRE·Phoebe B MitchellIngrid A Holm
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May 29, 2018·Journal of Empirical Research on Human Research Ethics : JERHRE·Michelle L McGowanMelanie F Myers
Apr 7, 2021·Personalized Medicine·Danya F VearsMadeleine J Murtagh

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