Parental Knowledge and Perceptions of Pediatric Genomic Testing for Autism Spectrum Disorders in Rural Settings

Abstract

Although genetic testing for ASD is the standard of clinical care in the USA, the use of advanced genetic tests in children with ASD is controversial. The aim of this study was to access parental genetic knowledge, attitudes, and intention regarding advanced genetic testing for autism. Our final dataset consisted of 207 valid responses. Our final sample included 207 parents of children with ASD and most are mothers of children (88.9%). The average age of our participants is 37.8 years old. The majority of our participants are Caucasian (73.4%), followed by African Americans (13.5%), Hispanics (7.7%), Native Americans/American Indians (2.4%), and Asians (2.9%). A large number of parents (85%) reported were not aware of the advanced level of genetic testing, such as chromosomal microarray analysis (CMA) and whole-genome sequencing (WES). Most parents (84%) reported that they would take their children to undergo genetic testing. This study was a cross-sectional study using a convenience sampling technique through a variety of community outlets in Eastern North Carolina between January 2016 and May 2016. And the most significant predicators of parents’ genetic knowledge were education attainment (P < 0.05) and income (P < 0.05). Also, parents with more positive attitudes about genetic testing had higher intention to take their children to get tested than those with less positive attitudes. Our findings reflect the immediate need to educate parents with lower education/income levels about genetic testing for ASD. Educating parents about these genetic tests can help parents make more informed decisions associated with testing their children with ASD in future studies.