Pursuing genetic testing for children with autism spectrum disorders: What do parents think?. Issue 2 (28th September 2020)

• Record Type: Journal Article
• Authors: Zhao, Shixi; Chen, Wei‐Ju; Dhar, Shweta U.; Eble, Tanya N.; Kwok, Oi‐Man; Chen, Lei‐Shih
• Is Part Of: Journal of genetic counseling. Volume 30:Issue 2(2021)
• Page Start: 370
• Page End: 382
• Publication Date: 2020-09-28
• Subjects: autism spectrum disorders -- children -- decision‐making -- education -- genetic counseling -- genetic testing -- genetics services -- intention -- parents; Genetic counseling -- Periodicals; 616.042
• DOI: 10.1002/jgc4.1320
• Languages: English
• ISSNs: 1059-7700

Abstract

Abstract: The American Academy of Pediatrics, the American College of Medical Genetics and Genomics, and the American Academy of Neurology recommend genetic testing, as a genetic evaluation tool, for children diagnosed with autism spectrum disorders (ASD). Despite the potential benefits, the utilization of genetic testing is low. We proposed an integrated theoretical framework to examine parents' intention and associated psychosocial factors in pursuing genetic testing for their children with ASD. Recruiting primarily from the Interactive Autism Network, a nationwide sample of 411 parents of children with ASD who had never pursued genetic testing for their children completed our theory‐based online survey. Data were analyzed using structural equation modeling. About half of the parents were willing to pursue genetic testing for their children with ASD. Findings of the structural equation modeling suggested a good model fit between our integrated theoretical framework and survey data. Parents' intention was significantly and positively associated with their attitudes toward genetic testing, subjective norm, and self‐efficacy in having their children tested. This study serves as an initial window to understand parental intention to pursue genetic testing for their children with ASD. Our findings can help physicians and genetic counselors understand, educate, counsel, and support parents' decision‐making about having their children with ASD genetically tested. Furthermore, our study can also assist physicians and genetic counselors in developing theory‐ and evidence‐based patient education materials to enhance genetic testing knowledge among parents of children with ASD.