The University of Cambridge has said the third and final consultation report on the controversial Spectrum 10K study into autism will be published in the “coming months”, despite initially saying the document’s release was “imminent”.
The project, led by Cambridge’s Autism Research Centre, looks to obtain the DNA of 10,000 autistic people to understand “the genetic and environmental factors” which contribute to their wellbeing, but was paused amid fears from the autism community that the research amounts to “eugenics” – something to which the study team insists they are “ethically opposed” in “any form”.
The pause was announced by the principal investigator, Professor Simon Baron-Cohen, in September 2021, when the researcher said recruitment would be put on hold in order to carry out a “meaningful consultation” with the community.
Independent consultancy agency Hopkins Van Mil were tasked with conducting the three-stage consultation, with the first report on who would design the consultation being published in May 2022 and a publication on the creation of the consultation itself released in December 2022.
The third and final phase – a community survey to gather thoughts on the study – was launched from March to May 2023, with five webinars conducted in the final month for interested individuals to ask questions of HVM and Spectrum 10K researchers off-the-record.
Transcripts of the five sessions were eventually released in September, when the survey had closed to new responses, meaning those who missed the live webinars earlier in the year could not reference answers from the study team in their submissions.
The third and final report examining the survey responses is yet to be published.
In January, Liam O’Dell requested a copy of the detailed, coded analysis of responses to HVM’s consultation survey – a question-by-question breakdown to which the independent consultants previously declined to commit, suggesting it “may not be the most useful way to present the findings”.
Despite the suggestion it may not be included in the final report, the University of Cambridge refused to the Freedom of Information request, citing an exemption which protects information which is scheduled for future publication.
“While held by the University, this information is exempt under section 22(1) of the Act as all the ‘analysis of Spectrum 10K consultation survey responses’ is contained in a full report by Hopkins Van Mil to be published imminently on the Spectrum 10K website,” it said.
However, when this website requested an internal review of this decision in February, the University of Cambridge said on Wednesday – exactly one year since its consultation survey was launched – that the report is due to be published “in the coming months”.
It also clarified that only the final Phase 3 report is held by the institution, and not “working documents” which are “held solely” by HVM.
The latest letter from the University of Cambridge raises further questions around the planned publication of the report, with HVM and Spectrum 10K failing to meet three deadlines for its release in 2023.
In a webinar held in May, Spectrum 10K researchers announced their intention for the study to relaunch in October last year. They then said the third and final consultation report would be published “in the autumn”, but it is yet to be made public.
They went on to miss another deadline at the end of 2023, as in June researchers said the report would be released “later this year”.
The latest update came in January of 2024, when a statement on HVM’s webpage for the consultation said the report would be published on both HVM and Spectrum 10K’s websites “in due course”.
It said: “We are aware that our consultation participants have generously given us a tremendous amount of their time and energy to discuss issues that are deeply personal and important to them, and we are very grateful.
“The rich, detailed and thoughtful feedback we have received has given us much to reflect on and learn from since the consultation closed in the summer.
“We are now in the process of collating our responses to the consultation feedback and recommendations to explain what we have learnt, the changes we will make in how we conduct research studies and how and why we want to continue to engage with the autism community in a meaningful way.
“We are aware that our consultation participants, and the autism community more broadly, are awaiting this information and we would like to ask for your patience while we finish this process.”
Last month, the Wellcome Trust confirmed it had given a “no-cost extension” to the Spectrum 10K study, after the Cambridge researchers’ initial grant application requested funding start from January 2019 for a period of 60 months (five years), meaning it would end in January 2024.
“We supported the decision of the Spectrum 10k team to pause the study in order to carry out a co-designed consultation with the autism community.
“Taking this pause into account, Wellcome approved a no-cost extension to continue the grant activities of the project until January 2026,” a Wellcome Trust spokesperson said.
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This report is the latest in his series ‘The Spectrum 10K Files’, with the full story of the controversial autism project explored in his upcoming non-fiction book, ‘Selling Out the Spectrum’ – to be published in 2024.
Read the previous articles online now:
Liam O'Dell