Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

Kayla E. Wagner, Jennifer McCormick, Sarah Barns, Molly Carney, Frank A. Middleton, Steven Hicks

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
JournalJournal of Autism and Developmental Disorders
DOIs
StatePublished - Jan 1 2019

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Genetic Testing
Epigenomics
Insurance Coverage
Bioethical Issues
Parents
Developmental Disabilities
Genetic Research
Privacy
Autism Spectrum Disorder
Saliva
Technology
Research

All Science Journal Classification (ASJC) codes

  • Developmental and Educational Psychology

Cite this

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title = "Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder",
abstract = "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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Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder. / Wagner, Kayla E.; McCormick, Jennifer; Barns, Sarah; Carney, Molly; Middleton, Frank A.; Hicks, Steven.

In: Journal of Autism and Developmental Disorders, 01.01.2019.

Research output: Contribution to journalArticle

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AU - Carney, Molly

AU - Middleton, Frank A.

AU - Hicks, Steven

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