A University of Cambridge study which plans to use autistic people’s DNA to investigate the “genetic and environmental factors” which contribute to their wellbeing – a project which autistic advocates believe amounts to “eugenics” – has finally released its consultation to decide its future.
Spectrum 10K, led by the university’s Autism Research Centre, launched back in August 2021, but was paused just weeks later following an outcry from the autistic community over the study’s objectives.
Professor Simon Baron-Cohen, the study’s principle investigator, said at the time: “From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.”
“We have decided to pause any further recruitment of new participants into Spectrum 10K. We will also not analyse any data already collected in Spectrum 10K. This will give us time to co-design and conduct a meaningful consultation with autistic people and their families and incorporate suggestions for how to improve Spectrum 10K.”
The team of researchers appointed independent consultants Hopkins Van Mil to carry out the consultation, with phases one and two concluding in February and October last year respectively.
While the first phase determined who would co-design the consultation and the second related to the co-design itself, this third and final phase is the consultation launch – previously due to take place in “mid-January” before being postponed.
In a video accompanying the news article announcing the launch on Monday, Professor Baron-Cohen said: “This study has generated lots of really important issues including bioethical issues and some concerns. The consultation is just going to give us space to hear a diverse range of voices that we hope are representative of the different autism communities.
“What we’re really hoping is that not only will this improve the study […] to help us understand how to do genetics research in autism safely, but also I think it’s going to really help change the way autism research happens in the future.”
While the survey itself says it will be open until “the end of April”, the news article states it will receive responses for two and a half months until May.
One of the first questions from the consultation asks if it is “possible for Spectrum 10K to be improved”, with respondents then given the choice of whether to agree or disagree that “the purpose of the consultation is to improve the study” and that they would like to continue with the survey “on that basis”.
Selecting “I disagree” at this stage ends the survey for the individual.
The consultation spans 16 areas in total – including the aims of the study, ethics and values, data collection and management, and the future involvement of autistic people – and can be accessed via the Spectrum 10K website.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.
Liam O'Dell 