A study aimed at collecting DNA from 10,000 people with autism and their families has been paused due to intense backlash from the autism community, which claims it was not properly consulted about the goals of the research. The outrage, driven largely by activists from the autism community, forced the scientists to suspend their research.
The researchers were forced to suspend the large U.K.-based study of genetics and autism spectrum disorder (ASD) after it caused fears that the data gathered by the scientists could be misused by other researchers seeking to “cure” ASD.
The autism community has become increasingly vocal over the past decade and opposes any efforts to help families and their children “cure” or eradicate the condition.
Nature reports that the Spectrum 10K study, led by Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge. aimed to collect DNA samples from 10,000 people with autism and their families, along with information on their mental and physical health. The project, which costs £3-million (US$4-million), is intended to study the genetic and environmental contributions to ASD, and co-occurring conditions like epilepsy and gut-health problems.
“If we can understand why these co-occurring conditions are more frequent in autistic people, that could open the door to treatment or management of very distressing symptoms,” said Baron-Cohen, according to Nature.
Shortly after its launch on August 24, autism community activists and “some ASD researchers” raised concerns that the study was going ahead without “meaningfully consulting the autism community” Nature reports.
A group called “Boycott Spectrum 10K” was founded to impede the research project, and has announced plans to protest outside the Autism Research Centre in October. A separate petition was also lodged against the study, gathering more than 5,000 signatures.
According to Nature, those who signed the petition say that it is unclear how the study will improve the participants’ wellbeing and that the study seems to be more about data collection.
Following the backlash, the Spectrum 10K study was paused on September 10, and its members apologised for causing distress. The research team has promised to consult with the autism community moving forward.
As detailed by the science publication, Baron-Cohen achieved some notoriety for his controversial “extreme male brain” theory of ASD, which theorizes that males are on average better than females at “systematizing” — recognising patterns and sticking to rules. Women, in contrast, are better at empathizing. Baron-Cohen asserts that people with autism sit on the male end of the spectrum.
His critics claim that his study could lead to the stigmatization of autistic people, by suggesting that they do not have empathy.
Members of Boycott Spectrum 10K worry that the research could lead to a prenatal screening test for ASD or related conditions. “A genetic study would be terrifying for lots of autistic people; there’s a long-established and well-known history around eugenics and disability,” said Kieran Rose, an advocate with the group.
Contrary to their fears, Spectrum 10K says that the study “does not aim to eradicate autism.” Baron-Cohen says his team vehemently opposes eugenics and prenatal screening was never in consideration.
“Genetics of autism is complex; we may be talking about hundreds or thousands of genes,” he says. “You could never diagnose autism prenatally, and that’s because, even if we knew the biology, diagnosis rests on behaviour. That’s only possible to observe postnatally.”