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 - Funding Information:
Acknowledgments This study was supported by a grant from the Kirson-Kolodner-Fedder Charitable Fund at the Baltimore Community Foundation and the National Institute of Mental Health (R41 MH111347-0). The authors thank Jessica Bieler, MPH (Penn State), Richard Uhlig and Cynthia Dowd Greene (Quadrant Biosciences Inc.) for assistance with study design. Thanks to Jeanette Ramer, MD and Cheryl Tierney, MD (Penn State), and Carroll Grant, Ph.D., Cynthia Bright, MD, and Diane Montgomery, MD (SUNY Upstate) for assistance with participant identification. We acknowledge Andy Tarasiuk, Rachel Pauley, MD, Falisha Gillman, MD, Julie Vallati, Nicole Ver-diglione, and Parisa Afshari, MD, Ph.D., (SUNY Upstate) for assistance with participant recruitment and survey collection.
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.
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U2 - 10.1007/s10803-019-03990-6
DO - 10.1007/s10803-019-03990-6
M3 - Article
C2 - 30903561
AN - SCOPUS:85064199872
VL - 50
SP - 3114
EP - 3125
JO - Journal of Autism and Developmental Disorders
JF - Journal of Autism and Developmental Disorders
SN - 0162-3257
IS - 9
ER -