Understanding Families' Opinions About Clinical Genetic Testing

The survey

This survey focused on people's knowledge about genetics, and their opinions about possible genetics testing and ASD. A questionnaire was posted to parents in 688 households on the Daslne database, as well as to 135 families of children attending three schools for children with ASD and learning difficulties. Surveys were returned by 377 parents, 328 from Daslne and 49 from schools. 264 replies were from mothers and 113 from fathers. 10% of families had more than one child with a diagnosed ASD and 26% had more than one child with ASD-like symptoms. 18% said that they had relatives with a diagnosed ASD and 59% said that they had relatives with ASD-like symptoms in their extended families. Two parents said that they were diagnosed with ASD themselves, though a further 59 suspected that they had ASD.

Findings

Overall, parents were very interested in ASD genetic testing. When asked what they thought about ASD testing if it was available, 54% said that they would want pre-natal testing and 40% thought that pregnancy testing should be available. 42% said that having a child with ASD had affected their decisions about having future children. Parents who had more than one child with ASD-like symptoms, and parents who had relatives with ASD-like symptoms, were more likely to want pregnancy testing. Parents whose children had more severe impairments, or who said that their children were more difficult to manage, were more likely to say that they wanted pre-natal testing and to say that having a child with ASD had affected their decisions to have more children.

Most parents thought that they knew very little about genetic causes of ASD and only 12% recalled that a professional had talked to them about ASD genetics at the time of diagnosis. Many thought that ASD had a genetic cause, and that because they had one or more children with ASD, there would be a greater chance of having another child with ASD than other parents. Just 47 parents correctly estimated the chance of them having another child with ASD as 10-20%, with 62% rating the chance as 50% or more. The more that parents over-estimated the chance, the more likely they were to say that having a child with ASD had affected their decisions to have more children.

What we are doing next

We are hoping to publish these results in academic journals and through the National Autistic Society. We are also hoping to use these results to apply for funding for a larger grant, to further investigate what family members think about possible genetic testing for ASD.

We would like to thank all participants for their help. For further information contact Jeremy.parr@ncl.ac.uk