CMA Genetic Testing: Genetic Literacy, Education Needs and Decisions among Parents of Children with ASD
Grant
Overview
abstract
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Autism Spectrum Disorders (ASD) are a group of highly inheritable disorders. Although a novel genetic technique- Chromosomal Microarray Genetic testing (CMA), has been officially recommended as a part of routine care in the ASD diagnostic process, parent?s perceptions regarding taking their children to undergo autism genetic testing is still largely unknown. To ensure optimal access to, and use of, genetic technologies and to reduce the potential negative impact of concerns regarding autism genetic testing, it is critical and ethical to hear perspectives from parents of children with ASD. Compared to other people, this particular group of individuals is at higher risk of having other children with ASD, are often strong advocators of ASD-related health policies, and are the final decision-makers in ASD genetic testing for their children. A mixed-method research design will be used with a combination of qualitative and quantitative methods to 1) Identify the genetic literacy, decisions and educational needs related to ASD genetic testing among parents of children with ASD, and to design and pilot test a web-based educational program among parents of children with ASD.
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