Chromosomal microarray analysis (CMA) is a robust technology officially recommended for children with autism spectrum disorders (ASDs). However, CMA genetic testing might raise ethical, legal and social issues such as stigmatization, health insurance concerns and test misconceptions. Therefore, it is essential to understand what might motivate or inhibit test decisions among parents of children with ASD.
Lei Xu and her colleagues at East Carolina University are conducting the first community-based, theory-driven project to assess the genetic literacy, educational needs and decision-making processes regarding CMA genetic testing among parents of children with ASD in eastern North Carolina. Xu and her team have already conducted individual, face-to-face interviews with 45 parents and found that none of the parents had heard of CMA genetic testing or had met with a genetic counselor or other healthcare provider about CMA. The majority of parents (65 percent) reported that they would like to have their children tested if this test is offered to them. However, parents raised many concerns about the test, including cost, test procedure, stigmatization and transportation. These findings highlight the need for culturally appropriate educational interventions targeted at increasing knowledge of, and accessibility to, CMA testing among parents of children with ASD.
Xu’s team aims to extend this work with a larger-scale survey coupled with an educational intervention program. The team plans to: 1) examine parental genetic literacy, educational needs and decision-making regarding CMA genetic testing using an online survey, and 2) use this information to inform the development and evaluation of a Web-based educational intervention for parents of children with ASD. Completion of this proposed project will provide useful insights into genetic literacy and medical practice, as well as the potential for intervention that could improve the diagnosis and treatment of ASD.