The long-awaited public consultation over Spectrum 10K – the controversial Cambridge study looking to use autistic people’s DNA to “investigate genetic and environmental factors” affecting their wellbeing – has failed to meet its own launch day deadline.
In May, researchers said the third and final phase of the process – where the consultation itself would go live – is “expected” to take place in “September/October 2022”.
However, as of midnight on Monday, both the websites of Spectrum 10K and independent community engagement agency Hopkins Van Mil did not include updates on the consultation’s progress.
After being approached by Liam O’Dell for a comment in mid-September, a spokesperson for Spectrum 10K said they “do not have anything further to add at this time”.
Announced in September last year, news of a consultation about the study followed concerns from advocates that the project amounted to “eugenics”, with principal investigator Professor Simon Baron-Cohen stating that the team “can see that we need much wider consultation”.
“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,” he wrote.
Academics confirmed in May that the first phase of the consultation – deciding who should co-design the consultation – was carried out between December 2021 and February 2022.
While they explained phase two would concern the actual “co-designing [of] the consultation”, with an expected start date of June 2022, no further updates have been issued on phases two or three since May.
Both Spectrum 10K and Hopkins Van Mil have been contacted by this website for comment.
Update – 02/11/22 – 11:30: In response to a request for comment, a Hopkins Van Mill (HVM) spokesperson told Liam O’Dell: “Phase 2 – the co-design of the consultation – was concluded on Monday, 31 October.
“HVM and Spectrum 10K will be providing an update of progress on our websites shortly.”
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.