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

The questionnaire was custom-made and not validated, and the authors describe the work as a pilot exploration. Respondents were not given a direct way to express concerns about genetics research, so supportive answers do not show that concerns were absent. Participants came from an autism register of people who had already chosen to take part in autism research, were mostly Dutch, were higher educated than the Dutch population, and were reached through online questionnaires. The main cross-sectional results used 1270 participants, while the paper also reports 2328 yearly questionnaire completers, and 2023 participants differed in age, sex and education from 2018 participants. Legal representatives were a mixed group of parents, other family members and guardians, so their responses may not be comparable. The survey did not define heritability or distinguish clinical genetic testing from research genetic testing, which may have affected how people answered. The paper gives inconsistent information about predictors, including whether having been offered genetic testing was linked to wanting to learn more.

The work was supported by ZorgOnderzoek Nederland Medische Wetenschappen (ZonMW) under grant number 60-63600-98-834. The authors declared no potential conflicts of interest.

Do not read these supportive views as proof that the autism community prioritises genetics research or wants genetic testing. The survey was designed to gauge interest, did not let participants express concerns, and the authors state it is not a call for more genetics research.