When my colleagues and I asked autistic people and parents of autistic children in Sweden how they feel about genetic research in autism, one response stood out: “I hope genetic research finds new ways to help us, not erase us.” It captures a tension that has shaped debates about autism genetic research for years.
Genetic research has transformed our understanding of autism. Over 100 genetic variants associated with autism have been identified, and researchers continue to search for biological factors that might explain why some people are autistic and why autistic people can have very different experiences and support needs.
Our recent study found that most autistic people and parents of autistic children are not opposed to this research. Most participants expressed willingness to take part in genetic studies and viewed efforts to understand the genetic causes of autism positively.
At the same time, that support came with important reservations. The primary concern was not the science itself, but how genetic information might be used in the future.
Many participants feared that genetic discoveries could contribute to efforts to eliminate autism and contribute to what they viewed as a form of modern eugenics. One participant wrote: “When people start checking fetal genes to eliminate all deviations, it is honestly eugenics … If this discussion existed about any other group of people, everyone would call it Nazi ideas and say no thanks.”
Another said: “I am afraid we will all be sent to gas chambers to be eradicated in a society that wants more efficiency and fewer people who are not seen as useful.”
These fears may sound extreme, but they reflect a broader concern that autistic people are increasingly expressing. Advances in genetics could be used to reduce the number of autistic people rather than improve the lives of those who already exist. One participant put it starkly: “Abort Aspies [autistic people], see living Aspies as walking failed abortions who should have been killed.”
Others worried that emerging reproductive technologies could deepen social inequalities. One participant commented: “Those who have the economic means to modify their future children and give them an inborn advantage in life … could dominate their future professional fields.”
Where these concerns become real
Although the predictive power of such screening for complex traits like autism remains limited, companies are already marketing these services. For example, Nucleus Genomics markets polygenic embryo screening for autism among other conditions. Their company advertises these services using the slogan: Have your best baby.
Jonathan Anomaly, co-founder of Herasight, a company that offers polygenic embryo screening, openly advocates for these technologies. In his article Defending eugenics, he argues that parents should use tools like embryo screening to select for traits that will help future generations to thrive. Against this backdrop, participants’ fears about eugenics appear less abstract.
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The debate became particularly visible when Spectrum 10K, the largest autism genetics project ever launched in the UK, was paused in 2021 following a backlash from some autistic campaigners. The campaigners questioned whether the research would ultimately benefit autistic people and raised concerns that genetic information could be misused to pursue a “cure” or eradication of autism.
Campaign group Boycott Spectrum 10k had the slogan “Nothing about us, without us”, which captured a central concern raised in that debate. Autistic people do not only want to be included in research, but they also want to have a meaningful role in shaping what is studied and how findings are used.
A previous study has suggested that autistic people and researchers do not always prioritise the same questions. Researchers often focus on causes and biology, while autistic people frequently emphasise quality of life, support and everyday challenges. This mismatch may help explain why genetic research can generate mistrust even when intentions are positive.
Our findings suggest that public discussions sometimes frame autism genetics too simply. Participants were not broadly opposed to genetic research in autism. Most supported it. Many wanted more research, not less. What they objected to was the possibility that genetic research in autism could be used to make autistic people disappear.
For many participants, the value of autism genetics depended less on what scientists discover than on how those discoveries are used. Research aimed at understanding autism and supporting autistic people was welcomed. Research perceived as contributing to their elimination was not.
That distinction may help explain why debates around autism genetics can become so emotionally charged. The disagreement is often not about the science itself. It is about who shapes the research, whose voices are heard, and the future that the science might help create.
For this study, Samuelle Fajutrao Falk has previously received funding from Sällskapet Barnavård. This study has also received funding from Hjärnfonden and the Swedish Foundation for Strategic Research (SSF).