Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA.
Department of Psychology, The University of Texas Permian Basin, Odessa, TX 79762, USA.
Int J Environ Res Public Health. 2021 Dec 23;19(1):118. doi: 10.3390/ijerph19010118.
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.
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.
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.
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.
自闭症谱系障碍（ASD）病例在台湾的诊断数量不断增加。对 ASD 儿童进行基因检测有几个潜在的好处，且需要自费。父母在让孩子接受 ASD 检测方面起着关键作用；因此，了解他们对基因检测的看法以及他们认为的障碍至关重要。
对台湾 39 名 ASD 儿童的家长进行了半结构式访谈。访谈进行了录音，并逐字记录。使用 NVivo 12 软件（QSR International，澳大利亚唐卡斯特）来促进归纳式编码方法。
大多数参与者（74.4%）支持对他们的 ASD 儿童进行 ASD 基因检测，理由包括阐明 ASD 的病因、知情的家庭计划、为 ASD 研究做出贡献以及早期发现和干预 ASD。其他人表示，他们反对（17.9%）或不确定（7.7%）是否要带他们的 ASD 儿童进行基因检测。反对者表示，他们的主要担忧与基因检测没有价值、可能引发家庭冲突以及经济困难有关。
我们采访的大多数 ASD 儿童的家长对 ASD 基因检测持赞成态度。有必要增加家长获取教育和咨询的机会，并将检测纳入台湾全民健康保险。
