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22-03-2019 | Original Paper | Uitgave 9/2020 Open Access

Journal of Autism and Developmental Disorders 9/2020

Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

Journal of Autism and Developmental Disorders > Uitgave 9/2020
Kayla E. Wagner, Jennifer B. McCormick, Sarah Barns, Molly Carney, Frank A. Middleton, Steven D. Hicks
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Examining community views on genetic/epigenetic research allows collaborative technology development. Parent perspectives toward genetic/epigenetic testing for autism spectrum disorder (ASD) are not well-studied. Parents of children with ASD (n = 131), non-ASD developmental delay (n = 39), and typical development (n = 74) completed surveys assessing genetic/epigenetic knowledge, genetic/epigenetic concerns, motives for research participation, and attitudes/preferences toward ASD testing. Most parents (96%) were interested in saliva-based molecular testing for ASD. Some had concerns about privacy (14%) and insurance-status (10%). None (0%) doubted scientific evidence behind genetic/epigenetic testing. Most reported familiarity with genetics (88%), but few understood differences from epigenetics (19%). Child developmental status impacted insurance concerns (p = 0.01). There is broad parent interest in a genetic/epigenetic test for ASD. It will be crucial to carefully consider and address bioethical issues surrounding this sensitive topic while developing such technology.

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