The correspondence between Spectrum 10K and Coventry and Warwickshire Partnership NHS Trust was released to Liam O’Dell on Wednesday, following a request made under the Freedom of Information Act.
The confirmation comes after a consultant psychiatrist at the Trust contacted a representative from Spectrum 10K in March last year, passing on concerns relayed to them while discussing the Cambridge study with others.
She wrote: “I wanted to clarify something with you which I was asked [by] a parent of an autistic patient when I mentioned participation in the study – ‘we will not participate as this study could be used to eradicate autistic people from the world like they did with Down’s [syndrome]’.
“I did not have an answer to that. Could you please let me know how this data will be used in the future so I can reply to families with confidence to gain better participation?”
Coventry and Warwickshire Partnership NHS Trust are not the only Trust to have shared comments they have received from individuals about the study, with this website revealing Pennine Care NHS Foundation Trust and Royal Wolverhampton NHS Trust had also forwarded on feedback to researchers in August and September last year respectively.
In both of these two instances, staff from the Trusts were advised “not [to] engage with trolls targeting” the study on Twitter – a comment which went on to anger autistic advocates online.
After Liam O’Dell revealed the emails, a spokesperson for Spectrum 10K said: “We recognise that the vast majority of critical comments about Spectrum 10K are made by people who are voicing legitimate concerns. This is why we are co-designing a consultation process in order to listen to as many of those concerns as possible.
“However, several members of the Spectrum 10K team have received online abuse. An email was written after somebody who was not a part of the core team reported ‘being trolled’ after receiving abuse on Twitter, and regrettably their language was echoed in this email.”
Yet in March, after the study team were approached by Coventry and Warwickshire Partnership NHS Trust, a Spectrum 10K representative issued a different response and said: “I confirm that Spectrum 10K is anti-eugenics. We are conducting the study to identify the causes of autism, both genetic and environmental, and with a view to identify subgroups who might benefit from different kinds of support.”
The comment is similar to Spectrum 10K’s grant application to the Wellcome Trust, in which they wrote the collection of 10,000 DNA samples from autistic people would “enable us to identify several genetic variants that contribute to the development of autism”.
“This information will allow us to better understand the biology of autism, improve on existing methods for diagnosing autism, and investigate if there are genetically-defined subgroups within autistic people,” it reads.
The team’s submission to two research ethics committees said the project would “identify genetic and environmental factors that contribute to autism and related conditions”.
Meanwhile, a Frequently Asked Questions webpage on Spectrum 10K’s website explaining the “purpose” of the study states it looks to “better understand how genetic and environmental factors affect the wellbeing of autistic individuals, including their physical and mental health”.
Another section reads: “The goal of Spectrum 10K is to identify both genetic and environmental factors that contribute to autism, co-occurring conditions, and wellbeing of autistic individuals.”
The word ’cause’ does not appear once on this webpage.
The revelation from Liam O’Dell comes as Spectrum 10K expects to launch its consultation with the autistic community about the study in September or October, following the completion of Phase One (deciding who should co-design the consultation) in February.
This was confirmed in May, but the researchers are yet to issue a statement on Phase Two (co-designing the consultation) which was expected to have taken place in July.
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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 