Autism Genetic Testing: Psychological Factors Associated with the Test Decisions Among Parents of Children with Autism Spectrum Disorders (ASDs) in Taiwan

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2014-07-09

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Abstract

Autism spectrum disorders (ASDs) are a group of highly inheritable disorders. Genetic testing for ASD is anticipated to be offered in Taiwan in the near future. Therefore, it is critical to explore the psychological factors regarding the test decisions among the ASD-affected population before the provision of the test. This study examined emotions, attitudes, and intention regarding ASD genetic testing among parents of children with ASD in Taiwan.

The purpose of this study was threefold: (i) systematically review the literature regarding the emotional responses, attitudes, and intention related to ASD genetic testing; (ii) examine the psychological factors, attitudes, and intention regarding ASD genetic testing among a sample of parents with autistic children in Taiwan; and (iii) utilize structural equation modeling (SEM) analyses to (a) examine the associations between the emotional and attitudinal factors that determine parents? intentions to undergo ASD genetic testing and (b) test the overall ?fit? of the model.

The first study systematically synthesized a decade (2003-2013) of empirical studies regarding the emotional factors, attitudes, and intention associated with undergoing ASD genetic testing and summarized the methodological quality of the included articles. This study indicated a lack of literature on this research area as well as the gap in the overall quality of the existing studies.

The second study was an empirical study among 444 parents of children with ASD from Taiwan in the preliminary data analysis. A SEM model was employed to analyze the relationship between the variables and test the fit of the theoretical framework. This study demonstrated that anxiety, fear, and guilt were all determinants of test intention among parents of children with ASD.

In summary, the findings from this dissertation have direct implications for clinicians, psychiatrists, and other health professionals. Specifically, it will (i) help explain the potential psychological factors associated with undergoing ASD genetic testing, (ii) assist genetic professionals in becoming aware of the existing psychological concern, and (iii) help design appropriate pre-test educational programs. Educational materials addressing parents? emotional management should be developed. More significantly, policymakers should include and address parents? opinions properly in the official documents.

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