Spectrum 10K: Consultation co-designers should agree to ‘improve the study, not stop it’

The controversial autism study Spectrum 10K has published its first consultation update in seven months, a week after the Health Research Authority (HRA) concluded its investigation into the DNA project by saying its favourable opinion “still stands”.

In a post to their website on Monday, the team of researchers confirmed Phase 1 of the consultation – which took place between December and February – has now been completed.

“Its purpose was to seek opinions about who should be involved in Phase 2, the co-design of the consultation.

“Eight virtual meetings were held via Zoom, each facilitated by [independent engagement agency] Hopkins Van Mil and including between one and six participants,” they said.

The team added that 29 people participated in the first phase of the consultation – of which 23 were autistic and six were non-autistic parents or carers, clinicians or representatives from charitable organisations.

Some participants were already known to the team, they confirmed.

The Hopkins Van Mil report

Following the conclusion of Phase 1, Hopkins Van Mil produced a report detailing principles for the co-designers involved in Phase 2, including there being an “agreement that if you are involved in the co-design you will not prevent the process moving forward to the consultation phase”.

This is despite the publication also stating “those who have been critical of the study should be involved in this process”, with one Phase 1 participant telling the consultants: “Critics are so important in order to ensure the highest standards are met. Criticism pushes research forward, improves processes and outcomes.”

Spectrum 10K summarised the principle in their update as meaning “those involved should agree to participate to improve the study, not stop it”.

Asked by this website in January what the project team would do if the consultation group conclude Spectrum 10K should be stopped altogether, a study spokesperson did not comment on this point.

Instead, they said: “The Spectrum 10K consultation will be co-designed with the autism community and the details of how it will work are therefore not known.”

Another principle stressed participants are “paid for their contribution in recognition of their time and experience”.

The next phases

Providing further information on the other two stages of Spectrum 10K’s consultation, the academics said the co-designing of the consultation (Phase 2) is expected to take place in July, with the actual consultation (Phase 3) due to launch in September or October.

The blog post also revealed that Spectrum 10K are looking for autistic co-leads for Phases 2 and 3, and individuals keen to take part in the next stages can fill out a survey to register their interest.

Ending the role of ambassador

Alongside issuing an update on the consultation, Spectrum 10K confirmed they would be terminating the role of study ambassador, as it will be “impossible to keep [them] up to date as the consultation progresses, because things can change very quickly”.

“This risks placing ambassadors in a situation where they are asked questions that they cannot answer, simply because we have not had time to bring them up to date.

“We want to avoid any risk of public confusion about the project, and focus entirely on the consultation,” they said.

The move comes after the HRA published its findings from its investigation into Spectrum 10K, in which it was revealed the study team “apologised and acknowledges that their response to the concerns [about ambassadors] raised fell below appropriate standards”.

As part of their inquiry, the HRA requested information about “allegations that ambassadors have used racist and transphobic language”, with the watchdog’s information governance and complaints manager confirming the ambassador in question was “reminded of the need to be respectful and to maintain high professional standards”.

The research team previously told Liam O’Dell in November they were “welcoming and respectful of all autistic people, including those who are transgender” after concerns were raised over the study team’s stance on trans issues.

The consultation update and report from HVM are available to read online.

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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