A Survey-Based Study Investigating Opinions on Genetic Research Among Swedish Autistic Individuals and Parents of Autistic Children.
Samuelle Fajutrao Falk, Anna Hellquist, Kristiina Tammimies
Swedish autistic adults and parents would join genetic research (70% and 68.4%) but their dominant fear is that it will be used to eliminate autism, not to support autistic people.
They want their own genetic results back, not just population-level findings.
Key findings
1About 70% of autistic adults and 68.4% of parents said they would personally participate in or allow their child to participate in genetic research, yet 61.1% of autistic adults worried about misuse of such research to a very large or large extent.
2The most frequent concern in open-ended responses was that genetic research could lead to the elimination of autism, including eugenics, abortion of autistic fetuses, and pressure to cure autism rather than support autistic people.
385.9% of parents and 90.1% of autistic adults said it was important to receive individual genetic results, while only 9.4% of autistic adults valued group-level findings compared with 56.5% of parents.
Still to come
How it was doneWhat they found
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What it does not show
Self-reported survey data with risk of recall inaccuracy and response bias; non-respondents may differ from participants. The sample was predominantly women (94.6% of parents, 74.7% of autistic adults), so findings may reflect primarily female perspectives. Data were collected in 2020; the authors note that debates around polygenic scores and neurodiversity have intensified since, and concerns may be stronger now. Participation required a formal autism diagnosis, excluding self-identified autistic people who may hold different or more critical views. The two groups received different questionnaires (e.g., only parents were asked about pregnancy termination; only the autism group had a comment box), limiting direct comparison. Recruitment was primarily online, which may have skewed the sample toward people more engaged with digital information and away from autistic adolescents and adults. Some respondents interpreted survey items as implying autism is undesirable, which the authors acknowledge may have influenced answers.
Declared interests
Funded by Hjärnfonden and the Swedish Foundation for Strategic Research (SSF); publication fees covered by Karolinska Institutet. The authors declared no conflicts of interest related to the work. One author (K.T.) is an associate editor for npj Genomic Medicine within the Nature Publishing Group.
The easy way to misread this
Do not read the 70% willingness to participate as unqualified community support for genetic research. The same respondents' most frequent open-ended concern was that research will be used to eliminate autism, and 61.1% of autistic adults worried about misuse to a very large or large extent. Their support is explicitly conditional on the research serving autistic people's well-being rather than preventing or curing autism.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →