Autistic campaigners are to protest outside a University of Cambridge autism research centre over a £3 million study they fear could be used to find a cure for autism, or even to attempt to eradicate it altogether through pre-natal screening.
Their campaigning efforts have already persuaded the researchers to pause work on the project, which was aiming to collect DNA samples from 10,000 autistic people across the UK.
The Spectrum 10K project would be the largest study of autism in the UK, and the researchers behind it say they want to examine how biological and environmental factors impact on the wellbeing of autistic people.
They say the project will “not look for a cure for autism and does not aim to eradicate autism”.
But campaigners say there are “enormous” concerns about the research and are warning autistic people not to take part.
The study is led by researchers at the Autism Research Centre (ARC) at the University of Cambridge, the Wellcome Sanger Institute, based near Cambridge, and the University of California Los Angeles (UCLA).
But last month’s high-profile launch, which included endorsements from celebrities such as autistic naturalist and television presenter Chris Packham, led to a significant backlash and sparked a new autistic-led campaign, Boycott Spectrum 10K.
This led to the researchers announcing a pause in recruitment of autistic people onto the study.
Members of Boycott Spectrum 10K say they are “gravely concerned” about the study, particularly over how DNA data from the research could be used, and the lack of safeguards over future use of the data by other researchers.
Despite the research team insisting that any use of the data must align with its own aims – that it will not be harmful, and will not be used to develop a cure for autism or for the purposes of eugenics – the Boycott Spectrum 10K campaign is still concerned.
It says there are “genuine and well publicised fears amongst the Autistic community around eugenics-based science” and the development of technology that would allow parents to abort autistic foetuses after pre-natal screening.
The campaign has also raised concerns about the lack of co-production in designing the research and with some of the lead researchers involved in the project.
They say that Professor Sir Simon Baron-Cohen, ARC’s director, has previously been closely associated with “debunked” theories that have led to “inaccurate and damaging stereotypes” about autistic people, such as their lack of empathy and the claim that most autistic people are male.
He strongly disputes these claims about his work.
They also point to the long-term involvement of another of the lead researchers, Daniel Geschwind, a professor of human genetics, neurology and psychiatry at UCLA, with attempts to find treatments for autism, and with organisations such as Cure Autism Now (CAN) and Autism Speaks (which later merged).
The campaign says it is “astounded” that the Spectrum 10K research received funding and ethical approval.
Boycott Spectrum 10K and the autistic-led group Autistic Inclusive Meets (AIM) are now planning a protest outside ARC on 29 October.
Emma Dalmayne, AIM’s chief executive, said she felt the pause in the study was “a token gesture”.
She said: “They still have not given any clarification of proposed safeguarding over this DNA.”
She said she feared the DNA that was collected would not be protected and would be “open for any researcher to use in any way they wish”.
And she said there were concerns that those taking part may not have been aware of those fears and the issue of consent.
She added: “When you think of the fact the funding they have put into this could have been better used to support autistic people, into educational settings for instance, it’s truly heart-breaking.”
Tanya Adkin, an autistic advocate and part of the Boycott Spectrum 10K team, said the study had “done immense damage to the well-being of the autistic community that it claims to want to help”.
She said the decision to pause the study was “positive” but “does not go far enough”.
She said: “S10K has been funded for the sole purpose of collecting autistic people’s DNA.
“Simply put, without the DNA, there is no study, which means that if S10K were to change the study in any meaningful way in line with the majority of the autistic community’s wishes, it would be an entirely new study that would need to be completely restarted and funding re-applied for.”
She added: “This study serves as a stark reminder that regardless of how ‘inclusive’ we claim to be as a society, different is considered less.”
A BRIL spokesperson said: “Both autistic and non-autistic members of BRIL support the campaign, and share concerns with the autistic campaigners, scientists, academics and many others leading this.
“We don’t see how a research project that admits its aims are unclear can be ethical – without this, no-one can give informed consent.
“There is over £3 million being spent on research no-one seems to want or need, at a time when autistic people are facing discrimination and inequality, as the Bubb report in Bristol showed.
“The lack of focus on rights, unclear information about who DNA data will be shared with, and the real intentions of those involved in this research are deeply concerning.”
An autistic BRIL member added: “It is imperative we reject eugenics and attempts to hinder us autistics.
“This Spectrum 10K, ‘at best’, is a dodgy mine for collecting genetic data that may end up in the hands of those that strive to ‘correct’ us.
“It ought to be a time to gather ourselves against ‘projects’ like this.
“Nothing about us without us: the money could have been used to support us, to make things more accessible for us. Ours is a voice that must and will be a roar.”
In a statement announcing the “pause” in the research, Baron-Cohen said it was clear they needed “much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion”.
He said the researchers “apologise unreservedly” for any distress they had caused.
Baron-Cohen told DNS this morning (Thursday): “We understand why autistic people have fears about how genetics might be used towards eugenics in relation to autism research, and I wrote about this back in 2018.
“However, we have also made clear that Spectrum 10K is anti-eugenics, anti-a cure for autism, anti-prevention of autism, anti-developing a prenatal test for autism, and that the aims of Spectrum 10K are to deepen our understanding of the causes of autism (genetic and non-genetic factors) and why these increase the likelihood of co-occurring chronic health conditions.”
On the concerns about the data, he said: “We will discuss how to improve safeguarding of their DNA during the consultation process, but one suggestion is that we establish a data-sharing committee that includes autistic people and their families that will evaluate every request for data sharing.
“To be clear, the DNA itself would not be shared, only the data generated by it, but the data sharing committee would then be able to limit who it is shared with, and in particular only scientists whose values are aligned with those of Spectrum 10K.
“This would be a legally binding contractual agreement.”
On co-production, he said: “There was consultation with the autism community from the outset, via our advisory panel.
“This included both autistic adults and parents of autistic children.
“Given the concerns raised, including new ones since the launch, we now want to pause the study to listen to a wider and deeper consultation with the autism community.”
Baron-Cohen strongly disputes the claims made about his work, and says he does not think autistic people lack empathy, that he has never said that it is largely males who are autistic, and that he “has written on the sex ratio in autism which was formerly 4:1 (m:f) and is now about 3:1 or 2:1, thanks to better diagnosis of females”, while the clinic he opened in 1997 pioneered the diagnosis of Asperger Syndrome in women.
He said that Prof Geschwind was “very clear that he is anti-cure of autism and his values are aligned with the values of Spectrum 10K (anti-eugenics, anti-cure of autism, anti-a prenatal test for autism)” and never received funding from CAN.
Picture: The Autism Research Centre
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