Spectrum 10K: Study continues to respond to journalists despite promising to ‘prioritise’ consultation

Spectrum 10K researchers have continued to issue statements to other writers and journalists, despite previously telling Liam O’Dell the team needed to “prioritise consulting with the wider autism community”.

The response, sent to this website in March, came after O’Dell asked academics why there wasn’t any mention of conflicts of interest in the Terms of Reference for the ‘Spectrum 10K Advisory Panel’.

A spokesperson replied: “Since October 2021, we have responded to all of your journalist requests. We are a small team and this takes a lot of time. 

“One outcome from Phase 1 of our consultation was the importance of keeping the momentum going on Phases 2 and 3. Therefore, we have now decided that we need to prioritise consulting with the wider autism community.

“With regret, we cannot continue to respond to any further requests.”

However, news site Spectrum published an article on the controversial DNA study on Friday featuring a quote from the project team, casting doubt on their statement previously issued to O’Dell.

Commenting on the conclusion of the Health Research Authority (HRA)’s investigation earlier this month, Spectrum 10K spokesperson Tracey Parsons told the outlet: “We are pleased that the HRA has announced that the original ethics opinion for Spectrum 10K still stands. We look forward to continuing this work with the autism community to find ways to improve Spectrum 10K.”

When O’Dell approached Spectrum 10K for a comment on 20 May, a spokesperson replied: “As per our previous correspondence, we will not be making any further response at this time.”

The latest developments follow a report last month in which it was revealed one member of the study team had described this website’s enquiries and articles as “pernickety” in internal correspondence.

The messages and emails, obtained as part of a Subject Access Request under the Data Protection Act, disclosed one email conversation in October between members of the Spectrum 10K study team and staff from the Autism Research Centre at the University of Cambridge.

Referencing this website’s report on the project team’s submissions to the ethics committees, one individual asks if “anyone [wanted] to respond to this”, to which another person responds: “I think if their main criticism is re costs of autism to the society, it’s fine. It’s becoming quite pernickety and we just need to ignore it.”

Earlier that same day, another email claimed the aforementioned article “makes a number of statements which are taken out of context”.

Other correspondence provided to O’Dell shows staff at the Health Research Authority (HRA) reach out to Spectrum 10K following the publication of another article in October.

“I wanted to contact you as soon as possible to keep you informed and to reassure you that this was not a direct reference to the Spectrum 10K study.”

Two months later, a message sent on Microsoft Teams commented on planned responses to this website’s enquiries and said: “I think all the questions are answered, they just might not be the answers LOD [Liam O’Dell] is looking for. I’m hoping he publishes them in full as I think he may take a couple of sentences out of context.”

“Liam has interpreted that as meaning that phase 1 starts on that date. The misunderstanding is not significant and will be clarified in a few weeks when we go public with the outcome of phase 1, so I suggest we do nothing for now.”However, no further update on the consultation has been provided since October 2021.

The 33-page dossier also goes on to reveal internal discussions around Spectrum 10K’s decision to “disengage from the journalist” reporting on the study.

On 31 March, a member of the project team wrote to the Central Communications Office at the University of Cambridge and said: “The Spectrum 10K team has continued to respond to ongoing journalist requests from Liam O’Dell, who writes for his own online blog, rather than for an external publication. 

“These requests are taking up a lot of team time and are impacting on the team’s ability to meet other important deadlines. There have been approximately 11 requests since October and each requires multiple team members to collect and review responses.

“In order to focus on running the Spectrum 10K consultation, the team would like to advise Liam that it will no longer be possible to respond to his requests. 

“Do you have any concerns about that approach? We recognise that this will lead to some negative comments online, but this could be considered an acceptable risk.”

The communications officer at the university replied: “I think this is entirely legitimate and is a strategy we have been forced to use with more high profile journalists before now.

“I think your response reads well. He will undoubtedly use this to further criticise Spectrum 10K, though I would hope in the interests of fairness he will at least quote your response.”

This website quoted Spectrum 10K’s refusal in full on 31 March.

It has now approached the study team for comment in light of their response to Spectrum this week.

Update – 02/06/22 – 13:30: In response to a request for comment, a Spectrum 10K spokesperson told Liam O’Dell: “As we have explained, we regret we cannot continue replying to your requests for information purely because we responded to a large number of requests from you between October 2021 and March 2022 and the time each response takes means our team has less time to focus on the consultation.

“However, we may respond to other journalists if needed, on a one-off basis. We do appreciate the valuable role journalists play in making information available to the wider public.”

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 in this series below:

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