University of Cambridge’s £3m autism study Spectrum 10K is paused amid protests at DNA safeguarding
A protest has been held outside the Autism Research Centre today (Friday, October 29) over a £3m University of Cambridge study.
The Spectrum 10K study is being conducted by a team of researchers at the university, including the Autism Research Centre, the Wellcome Sanger Institute and the University of California Los Angeles (UCLA).
Its aim is to “investigate the genetic and environmental factors that contribute to autism and related physical and mental health conditions to better understand wellbeing in autistic people and their families”.
The study seeks to collect survey responses and DNA samples from 10,000 autistic people nationwide.
But there are concerns from the autistic community and their families that the data could potentially be misused by other researchers seeking to ‘cure’ or eradicate autism.
The launch of the study in August sparked a new autistic-led campaign, Boycott Spectrum 10K.
This led to the researchers announcing a pause in recruitment of autistic people to the study to give them time to “co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K”.
Emma Dalmayne, chief executive of autistic-led group Autistic Inclusive Meets who was part of today’s protest, told Cambridge Independent: “They still have no safeguarding guarantee for that DNA, so anybody will be able to access it.
“£3m has been fed into this project when it could have been better used to support autistic people. There’s so much more they could have done with that money. There are people that need support now, why waste the money on finding out what caused us instead of using it to support us - we’re already here.
“It just breaks my heart to think about what could have been done with that money.”
Emma, who is autistic, continued: “There is very much a fear that we are going to end up being screened out.”
The research team has said 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 – however the Boycott Spectrum 10K campaign is still concerned.
A petition against the study has been signed by more than 5,000 people.
Emma, who will meet with study lead Professor Sir Simon Baron-Cohen in the next two weeks, hopes that researchers will protect the DNA of study participants before resuming the study.
A spokesperson for the University of Cambridge said: “Professor Simon Baron-Cohen and colleagues on the Spectrum 10K research team are carrying out a study aimed at understanding the genetic and environmental factors that contribute to autism and the health conditions experienced by autistic people.
“Spectrum 10K was approved by two specialist Research Ethics Committees. Although the Spectrum 10K team also sought advice and input from autistic representatives for two years leading up to the launch of the project, it has acknowledged that more work still needs to be done to address remaining concerns expressed by some members of the autistic community.
“Several thousand people have signed up to participate, so there is clearly support for the project. However, we endorse the decision by Spectrum 10K to voluntarily pause recruitment and listen to the concerns that have been expressed. This will allow the team time to co-design and conduct a meaningful consultation with a much wider group and incorporate suggestions for how to improve Spectrum 10K.”
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