Dissertation/Thesis Abstract

Attitudes toward Whole Genome Sequencing among Parents of Children with Autism Spectrum Disorder: A Qualitative Interview Study
by Rashkin, Misha Dmitry Shepard, M.S., Icahn School of Medicine at Mount Sinai, 2013, 54; 1537181
Abstract (Summary)

Background: Whole genome sequencing (WGS) is increasingly used for research and clinical purposes. This study explored attitudes of parents of children with a suspected autism spectrum disorder (ASD) toward WGS. Methods: A topic guide informed by the Theory of Planned Behavior was developed covering perceived benefits, concerns, barriers, and facilitators regarding WGS. Participants also summarized likely major factors in their decision. Interviews were audio-recorded, transcribed and analyzed for themes using framework analysis. Results: Participants (n=10) were generally in favor of WGS. The most recurring themes were: helping their affected child; concerns that secondary findings could be emotionally overwhelming; facilitators relating to access, e.g. living near a major medical center. When summarizing, money/insurance issues were most raised; this was also the most recurring barrier. Conclusion: Parents of children with ASD were enthusiastic but also expressed concerns about WGS. These findings will be useful to future research with this and other populations.

Indexing (document details)
Advisor: Sanderson, Saskia
Commitee: Bier, Louise
School: Icahn School of Medicine at Mount Sinai
Department: Genetic Counseling
School Location: United States -- New York
Source: MAI 51/06M(E), Masters Abstracts International
Source Type: DISSERTATION
Subjects: Genetics, Medicine, Health sciences
Keywords: Autism, Autsim spectrum disorder, Behavioral, Genomics, Qualitative, Whole genome sequencing
Publication Number: 1537181
ISBN: 9781303073489
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