Objectives: To understand parents’ opinions about clinical genetic testing for themselves and their children with ASD
Methods: In North East England, approximately 65% of children with ASD and their families are included on the Daslne regional research database (http://daslne.org/). In February 2011, parents were sent a survey that focussed on knowledge about ASD and genetics, and opinions about clinical genetic testing; the survey was designed by experienced ASD clinical academics (members of the AGP), a clinical geneticist, experts in sociology and ethics, and a parent of a child with ASD, who also runs the regional branch of the National Autistic Society. Paper surveys were sent by post to both parents in each family, with mechanisms for separate completion and return. An online survey link was included on the paper version. Reminders were sent to non respondents.
Results: Responses were received from 377 parents (264 mothers and 113 fathers, from 293 families). The ASD characteristics of the children of responders and non responders were very similar. Most parents overestimated their chance of having another child with an ASD; 43% of parents reported that having a child with ASD had affected their decision on whether to have more children. If it were available, 77% said they would like their child with ASD to be tested for ‘genes that caused ASD’. Parents were asked if their child was found to have a gene that caused ASD, whether they would like testing themselves – 78% said yes. Parents were asked hypothetical questions about prenatal testing, and testing during pregnancy. If it was available, 54% of parents would like to be tested for ‘ASD genes’ before having another child. 40% of parents thought that if it was possible to test a baby during pregnancy, to see what their chances of having ASD were, this should be available; 24% would not want this, and 36% were unsure. Parents of children with less well developed language skills were more likely to want testing. Parents written responses to survey questions revealed a very broad range of opinions about testing.
Conclusions: This is the largest survey of its kind to date, and many parents were positive about genetic testing; however, opinions varied considerably. These data show there is a need to engage with families’ views, understandings and concerns as the testing moves into clinical practice. Genetic testing of ASD families will increase over the next few years; opinions about whether clinical genetic testing should be available will influence how people respond to their availability.