TY - JOUR

T1 - Parent Perspectives Towards Genetic and Epigenetic Testing for Autism Spectrum Disorder

AU - Wagner, Kayla E.

AU - McCormick, Jennifer B.

AU - Barns, Sarah

AU - Carney, Molly

AU - Middleton, Frank A.

AU - Hicks, Steven D.

N1 - Publisher Copyright: © 2019, The Author(s).

PY - 2020/9/1

Y1 - 2020/9/1

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/85064199872

UR - https://www.scopus.com/pages/publications/85064199872#tab=citedBy

U2 - 10.1007/s10803-019-03990-6

DO - 10.1007/s10803-019-03990-6

M3 - Article

C2 - 30903561

AN - SCOPUS:85064199872

SN - 0162-3257

VL - 50

SP - 3114

EP - 3125

JO - Journal of Autism and Developmental Disorders

JF - Journal of Autism and Developmental Disorders

IS - 9

ER -