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Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder.

Authors
  • Wagner, Kayla E1, 2
  • McCormick, Jennifer B3
  • Barns, Sarah1, 2
  • Carney, Molly4
  • Middleton, Frank A2
  • Hicks, Steven D5
  • 1 Quadrant Biosciences Inc., Syracuse, USA.
  • 2 Departments of Neuroscience & Physiology, Psychiatry, Biochemistry & Molecular Biology, Pediatrics, State University of New York Upstate Medical University, Syracuse, USA.
  • 3 Department of Humanities, Penn State College of Medicine, 500 University Drive Mail Code H134, Hershey, USA.
  • 4 Department of Pediatrics, Penn State College of Medicine, 500 University Drive, Mail Code HS83, Hershey, USA.
  • 5 Department of Pediatrics, Penn State College of Medicine, 500 University Drive, Mail Code HS83, Hershey, USA. [email protected]
Type
Published Article
Journal
Journal of Autism and Developmental Disorders
Publisher
Springer-Verlag
Publication Date
Sep 01, 2020
Volume
50
Issue
9
Pages
3114–3125
Identifiers
DOI: 10.1007/s10803-019-03990-6
PMID: 30903561
Source
Medline
Keywords
Language
English
License
Unknown

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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