What are Parents' Emotional Responses to Chromosomal Microarray Genetic Testing? – A Qualitative Pilot Study among Parents of Children with Autism Spectrum Disorders

Although Chromosomal MicroarrayChromosomal Microarray (CMA) genetic testing is currently officially recommended as a part of the routine care in the ASD diagnostic process, little is known about parent’s emotional responses regarding taking their children to undergo CMA genetic testing. To ensure optimal access to, and use of, genetic technologies and reduce the potential negative impact of concerns regarding CMA, it is critical to understand parents’ emotional responses to this test.  We conducted qualitative interviews using a purposive sampling technique with 43 parents of children with ASD in rural eastern North Carolina (NC). This geographical location maintains one of the highest rates of families who are Medicaid-eligible and underserved parents of children with ASD in NC. We audio-taped all interviews, transcribed them verbatim, and conducted content analysis to identify themes and subthemes. Approximately 37% of our participants had more than one autistic child. Under half of our parents (42.8%) were ethnic minorities and all Hispanic parents (26.3%) either had no health insurance or were Medicaid-eligible. Our preliminary results demonstrate that anxiety, fear and guilt might be the factors most frequently associated with parents’ decisions to take their children to undergo CMA genetic testing. Our findings have implications for pediatricians, neurologists and other health care professionals who order CMA testing for children and their families with ASD. Pre-test counseling and health education is urgently needed among parents of children with ASD. Also, our results can inform a larger, quantitative survey of a representative sample of parents of children with ASD.