Researchers from the controversial Spectrum 10K project – which looks to examine the genetics and “environmental factors” behind autism – have told investigative journalist Liam O’Dell they can “cannot continue to respond” to his enquiries.
O’Dell contacted academics after Freedom of Information (FOI) requests revealed they were telling NHS Trusts to hand over responses for them to “review” before sending them to requesters.
In an email obtained by this website, a representative from Spectrum 10K wrote: “We have been contacted by a number of NHS sites who are receiving [FOI] requests about Spectrum 10K.
“We are happy to provide support and have asked that any sites that receive an FOI request send us their redacted response to us to review before release.
“With this in mind we would like to stress that our team needs time to complete the response review, and ask that any site which receives a FOI request to let us know as soon as you receive it so there is sufficient time to review before the FOI release deadline.”
This is despite advice from the Information Commissioner’s Office – who oversee enforcement of the Freedom of Information Act – stating that while it is “good practice” for public authorities to notify third parties about plans to disclose information affecting them “where it is reasonable to do so”, the duty to release documents “lies with the public authority”.
“Although the third party may refuse consent to release this information, any refusal would not be binding on the public authority,” the guidance reads.
It is not known whether Spectrum 10K has rejected or refused a response upon review.
When O’Dell posed this question to the research team on Monday, they replied on Thursday and said: “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.”
The above response was given in response to several questions from O’Dell sent earlier this week, as another document obtained by the journalist under FOI revealed details of a ‘Spectrum 10K Advisory Panel’ meeting.
After the Spectrum 10K team issued information about a session to be held on 9 September 2021, a health professional from Cambridgeshire Community Services NHS Trust replied to the email.
They said: “Do you have the Terms of Reference for the advisory group please? I need to check its [sic] not a conflict of interest to be the local PI [Principal Investigator] for one of the recruiting organisations and be on the advisory panel.”
It’s understood the individual became a member of the panel before Cambridgeshire Community Services NHS Trust was formerly enrolled as a research site for Spectrum 10K.
In response, a study representative attached the Terms of Reference and revealed “there is nothing about conflicts of interest” in the document. The health professional eventually decided to step down from the panel.
Alongside his questions about FOI reviews by Spectrum 10K, this website asked why there was no mention of conflicts of interest; what steps the study team had taken to ensure members couldn’t influence the operation of the study for their own benefit; and whether Spectrum 10K saw the lack of rules on conflicts of interest as an ethics concern.
These questions were also not responded to in their email sent on Thursday afternoon, mentioned above.
Spectrum 10K’s decision to no longer provide comments to O’Dell comes just days after the Health Research Authority (HRA) told complainants it would now look to provide an outcome of its investigation into the study “after the Easter break”.
In a message shared with O’Dell, the HRA wrote: “Last time we contacted you, we told you that the response we had received from the Spectrum 10K team would be forwarded to the Research Ethics Committee (REC) for their consideration.
“Due to the extent of the concerns raised, and the length of the response received from the Spectrum 10K team, this has taken longer than we had first thought.
“This in turn means that it will take longer than we had hoped to respond to you. We now aim to provide a response shortly after the Easter break. We appreciate that a delay might be frustrating, but please be assured that it’s simply to ensure that our investigation fully considers all of the points raised.”
Meanwhile it is not clear when an update will be given regarding Spectrum 10K’s ongoing consultation with the autistic community.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:
Liam O'Dell 