Exploring community perspectives on autism genetics research: Indications of supportive views and educational needs

Autistic advocates have raised substantial concerns regarding genetics research on autism. It is yet unclear whether these concerns reflect the perspectives of the broader autism community. In a sample of 1757 Dutch autistic adults, 445 parents of autistic children and 126 legal representatives of autistic adults, we explored perspectives on genetics research. We used a pilot repeated survey, consisting of questions about the perceived importance of the heritability of autism, reasons for this importance and the desire to learn more about heritability. Over 95% of the participants found it at least a little important to know that autism is highly heritable, and 67% would like to learn more about it. Participants mentioned that they find it important to increase knowledge about the causes of autism, and to improve the diagnostic process. There were no substantial differences in perspectives between stakeholder groups. Contrasting previous work, this pilot study indicates support for genetics research in autism, which highlights diversity in community perspectives. It also identifies an unmet educational need. We conclude that education on the topic of genetics, active research involvement of the autism community, and an ongoing dialogue between all parties are crucial to ethically and meaningfully move autism genetics forward.Lay abstractSome autistic people have shared strong concerns about research on the genetics of autism. However, this has not been investigated systematically in a large and diverse group of stakeholders. Therefore, researchers asked questions to over 1700 autistic adults in the Netherlands, 445 parents of autistic children and 126 legal guardians of autistic adults. The questions were (a) 'is it important to know that autism is heritable?', (b) 'why is this important to know?' and (c) 'would you want to learn more about the heritability of autism?'. Over 95% of the people said it is at least a little important to know that autism is heritable. Around 67% also said they would like to learn more about it. Many people said that learning about the genetics of autism could help us understand the causes of autism better and could help improve the diagnostic process. This study shows that there are different opinions about genetics research. It was also noted that people need clear and simple information about autism genetics. To make autism genetics research better and more respectful, it is important to give clear information about genetics, to involve autistic people and their families in research, and to have open conversations between researchers and the autism community. This way, autism genetics research can move forward in a way that is fair and helpful for everyone.