Attitudes toward Pursuing Genetic Testing among Parents of Children with Autism Spectrum Disorder in Taiwan: A Qualitative Investigation

Zihan Zhang, Justin Kramer, Haocen Wang, Wei-Ju Chen, Tse-Yang Huang, Yann-Jang Chen, Tung-Sung Tseng and Lei-Shih Chen
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Zihan Zhang: Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA
Justin Kramer: Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA
Haocen Wang: Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA
Wei-Ju Chen: Department of Psychology, The University of Texas Permian Basin, Odessa, TX 79762, USA
Tse-Yang Huang: Department of Special Education, National Tsing Hua University, Hsinchu 30013, Taiwan
Yann-Jang Chen: Department of Life Sciences and Institute of Genome Sciences, National Yang Ming University, Taipei 11211, Taiwan
Tung-Sung Tseng: Behavioral and Community Health Sciences Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA 70112, USA
Lei-Shih Chen: Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA

IJERPH, 2021, vol. 19, issue 1, 1-12

Abstract: Background: The diagnosis of autism spectrum disorder (ASD) cases is increasing in Taiwan. Genetic testing for children with ASD offers several potential benefits and is available with out-of-pocket expenses. Parents play a pivotal role in having their children with ASD tested; therefore, understanding their perceptions of, and perceived barriers to genetic testing is vital. Methods: Semi-structured interviews were conducted with 39 parents of children with ASD in Taiwan. Interviews were recorded and transcribed verbatim. NVivo 12 software (QSR International, Doncaster, Australia) was used to facilitate an inductive coding methodology. Results: The majority of participants (74.4%) supported ASD genetic testing for their children with ASD, citing reasons such as clarifying ASD etiology, well-informed family planning, contributing to ASD research, and early ASD detection and intervention. Others indicated that they were either against such testing (17.9%), or unsure (7.7%) about whether to take their children with ASD for genetic testing. Those who were opposed reported that their main concerns related to perceptions of no value of genetic testing, potential for family conflict, and financial difficulties. Conclusions: Most of the parents of children with ASD that we interviewed expressed favorable views of ASD genetic testing. There exists a need to increase parental access to education and counseling, and to include testing coverage in Taiwanese national health insurance.

Keywords: autism spectrum disorder; parents; perceptions; knowledge (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2021
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