Assessing an Interactive Online Tool to Support Parents' Genomic Testing Decisions

Journal of Genetic Counseling
Shelin AdamJan M Friedman

Abstract

Clinical use of genome-wide sequencing (GWS) requires pre-test genetic counseling, but the availability of genetic counseling is limited. We developed an interactive online decision-support tool, DECIDE, to make genetic counseling, patient education, and decision support more readily available. We performed a non-inferiority trial comparing DECIDE to standard genetic counseling to assess the clinical value of DECIDE for pre-GWS counseling. One hundred and six parents considering GWS for their children with epilepsy were randomized to conventional genetic counseling or DECIDE. Following the intervention, we measured parents' knowledge and empowerment and asked their opinions about using DECIDE. Both DECIDE and conventional genetic counseling significantly increased parents' knowledge, with no difference between groups. Empowerment also increased but by less than 2% in each group. Parents liked using DECIDE and found it useful; 81% would recommend it to others; 49% wished to use it along with a genetic counselor; 26% of parents preferred to see a genetic counselor; 7% preferred DECIDE alone; and 18% had no preference. DECIDE appears equivalent to genetic counseling at conveying information. In addition, it was highly acceptable t...Continue Reading

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Citations

Sep 11, 2019·Cold Spring Harbor Perspectives in Medicine·Alison M Elliott
May 10, 2020·Molecular Genetics & Genomic Medicine·Emma C HitchcockAlison M Elliott
Jul 4, 2019·Journal of Personalized Medicine·Catalina Villegas, Susanne B Haga
Mar 4, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Salma ShickhUNKNOWN Incidental Genomics Study Team
Apr 2, 2021·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Lora J H BeanUNKNOWN ACMG Board of Directors
Mar 17, 2021·Annual Review of Genomics and Human Genetics·Laura M AmendolaSarah Scollon
Nov 9, 2021·The Cochrane Database of Systematic Reviews·Janet JullDawn Stacey

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