A Cambridge research project which has attracted controversy for looking into the genetics of autism has warned another NHS Trust “not [to] engage with trolls targeting” the study on Twitter.
The email from the Spectrum 10K team, to Pennine Care NHS Foundation Trust, comes after this website revealed another message referring to “trolls” in November.
The correspondence to Royal Wolverhampton NHS Trust, sent in September, reads: “We are aware of the situation and preparing a response. In the meantime, we have posted a statement on Twitter and an automatic reply to the study email account.
“We recommend that you do not engage with trolls targeting Spectrum 10K on Twitter.”
When approached by Liam O’Dell for comment about this conversation, a Spectrum 10K spokesperson 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 the statement issued to Pennine Care NHS Foundation Trust – sent in August last year and revealed by this website today – came a month before the one emailed to Royal Wolverhampton NHS Trust.
No explanation behind the use of “trolls” in the Pennine Care email was given by Spectrum 10K, who did not respond to several requests for comment.
The message was one of several documents released to this website under the Freedom of Information Act, including an earlier draft of a Frequently Asked Questions in which the team address questions about genetics.
One question reads: “Are there autistic people involved in the process? How will you identify what is and is not eugenics? These teams have been known to lie in the past.”
The research team, who also posed the question, replied: “Autistic people will be part of our committee who makes the decisions about who to share data with, we are in the process of setting up this committee.
“Any data shared will be subject to a contract between research institutes which will explicitly state what it can and can’t be used for.
“The wellbeing and support of autistic individuals and the autism community is our highest priority.”
Liam O’Dell asked Spectrum 10K if the comment about the teams being “known to lie in the past” was an admission of dishonesty, or a comment on the tone of autistic people critical of the project.
Spectrum 10K did not immediately respond to this website’s right of reply.
It comes after the study team told O’Dell last month that it “cannot continue to respond” to the journalist’s requests for comment.
The same FAQ document goes on to ask about the definition of ‘wellbeing’ and ‘value’ to the autistic community, to which the research team replied with a definition of “not harmful”.
They said: “We are defining not harmful as research that can potentially improve the quality of life and wellbeing of autistic individuals.
“As mentioned earlier, all research proposals will be vetted by a team of individuals which will include autistic individuals. Only once it meets our oversight and governance standards and ethical principles will data be shared.
“Spectrum 10K uses the term ‘wellbeing’ to include physical and mental-health conditions, such as gastrointestinal problems; epilepsy; anxiety and depression; as well as lifestyle factors that influence the health and daily quality of life for autistic individuals.
“Spectrum 10K has consulted with an advisory panel, consisting of autistic adults and parents of autistic children, about their views on wellbeing and quality of life.
“The information collected in this study covers various aspects of mental and physical health but it is, by no means, an exhaustive definition of wellbeing.”
Elsewhere, an email sent on 25 February confirmed phase one of their consultation with the autistic community – which saw a group of “approximately 15-20 autistic people (and some parents and carers)” decide who should co-design the consultation – has been completed.
It follows a report by this website at the start of the year which revealed a Zoom session to discuss Spectrum 10K with an independent research firm would take place on 24 January.
The consultation was announced in September last year, when the team behind the study said they would pause the project to listen to concerns from the autistic community.
While it is not known whether the co-designing of the consultation – phase two – has taken place, a Spectrum 10K spokesperson said on 10 March an update would be issued “within the next month”.
In the same email from February, the Spectrum 10K team submitted a series of questions to NHS sites as part of their response to the ongoing investigation by the Health Research Authority.
A representative for the study writes: “As you may remember, Spectrum 10K includes a web-based capacity assessment tool for participants recruited online.
“The HRA has asked us to explore whether it would be feasible for these capacity assessments to be undertaken professionally instead.
“Based on recruitment to date we estimate this to be somewhere in the region of 200-400 assessments over the whole of the UK between approximately October 2022 and December 2023, which is around 14-30 per month across the UK.
“With current clinical sites, this could mean one or two such assessments per site per month, depending on location of participants.”
It’s understood that the HRA’s investigation into Spectrum 10K is ongoing, with a new update expected to be issued after Easter.
Update – 10:00: Minutes after publishing this article, Spectrum 10K declined to comment, referring Liam O’Dell to their previous response in which they said they “cannot continue to respond” to his enquiries.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:
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