The University of California, Los Angeles (UCLA), one of the main organisations involved in the controversial Cambridge project, did not sign a statement saying the study would be put on hold – a spokesperson has confirmed.
The project, which seeks the DNA of autistic people to “investigate genetic and environmental factors” that contribute to their wellbeing, was paused last September to conduct a “meaningful consultation with autistic people and their families”.
It came after the study faced strong opposition from the autistic community – including in the form of protests and a ‘Boycott Spectrum 10K’ campaign – amid concerns the research amounts to eugenics.
Academics have stressed the project “will not look for a cure for autism” and that Cambridge’s Autism Research Centre (ARC) is “ethically opposed to any form of eugenics”.
In the September statement, ARC director Professor Simon Baron-Cohen said: “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.
“The University of Cambridge, the Wellcome Trust, and the Cambridgeshire & Peterborough NHS Foundation Trust (co-sponsor of the study) are all fully supportive of us pausing Spectrum 10K to undertake this listening.”
The Wellcome Trust funded the study, which in addition to the University of Cambridge is led by the Wellcome Sanger Institute (a research body primarily funded by the Wellcome Trust) and the UCLA.
However, autistic advocates noticed at the time that the UCLA was not mentioned as being “fully supportive” of the study being paused.
In a statement to Liam O’Dell on Monday, a UCLA Health spokesperson said: “We were not asked to sign the statement, presumably because it involved patient recruitment and enrolment, all of which occurred in the UK.
“Our involvement in the study is in its analysis, not recruitment. It would be incorrect to say we were not supportive of the pause.”
Researchers behind the project later revealed the three phases of their consultation, involving a decision on who would co-design the survey (Phase One), the actual co-design (Phase Two) and the launch of the consultation itself (Phase Three).
In May, the Spectrum 10K team confirmed the first phase was carried out between December 2021 and February 2022. The second phase would be expected to take place in July with the consultation published this September or October.
When asked last week for an update on the process, a Spectrum 10K spokesperson said: “We do not have anything further to add at this time.”
While no payment is expected or necessary to access this content, if you would like to support Liam’s independent journalism, you can send a tip via CashApp.
You can also sign up to Liam’s newsletter, where he will share updates on his first non-fiction book which is due to explore the subject of autism research in detail.
This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.