Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

J Autism Dev Disord. 2020 Sep;50(9):3114-3125. doi: 10.1007/s10803-019-03990-6.

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.

Keywords: Autism; Bioethics; Diagnosis; Epigenetics; Parent perspectives.

MeSH terms

  • Attitude
  • Autism Spectrum Disorder / diagnosis
  • Autism Spectrum Disorder / genetics*
  • Child
  • Child, Preschool
  • Epigenesis, Genetic
  • Female
  • Genetic Testing*
  • Humans
  • Male
  • Motivation
  • Parents / psychology*
  • Surveys and Questionnaires