<p> <b>Background:</b> 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. <b>Methods:</b> 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. <i><b>Results:</b></i> 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. <b>Conclusion: </b> 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.</p>
| Identifer | oai:union.ndltd.org:PROQUEST/oai:pqdtoai.proquest.com:1537181 |
| Date | 07 June 2013 |
| Creators | Rashkin, Misha Dmitry Shepard |
| Publisher | Icahn School of Medicine at Mount Sinai |
| Source Sets | ProQuest.com |
| Language | English |
| Detected Language | English |
| Type | thesis |
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