see Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders
One of every 88 children born in the United States will be diagnosed with a form of autism, according to the US Centers for Disease Control and Prevention. Genetic testing for autism spectrum disorders (ASDs) has been available for a decade. However, the current rate of identifying an underlying genetic cause is less than 25%. In addition, genetic testing for ASDs raises issues of potential genetic discrimination, privacy concerns, and a potential psychological burden on parents and families. To assess current understanding and awareness of ASD genetic testing, Chen et al. conducted structured interviews with 42 parents of children diagnosed with autism. The research team recruited parents from community-based autism support groups in Texas to obtain a diverse ethnic and socioeconomic sample. Twelve parents in the sample had taken their child or children for genetic testing. Of the remainder, 63% had never heard of genetic testing for autism prior to the interview. Most of the parents (29 of 42) held positive attitudes about genetic testing, but 11 had negative attitudes, citing a variety of reasons. Most parents had learned about genetic testing through the mass media or scientific articles; only two interviewees had learned about ASD genetic testing from their children’s doctors. The authors advocate more education about autism genetic testing for both health-care providers and the public, as well as additional research to assess the influence of ethnic and socioeconomic status on attitudes toward genetic testing for autism. —Karyn Hede, News Editor
