The Queen Square Research Ethics Committee (REC) was one of the two bodies under the HRA to issue a favourable opinion to the controversial study into autistic people.
The HRA announced an investigation into the Cambridge-led project – which is currently paused pending further consultation with autistic people and their families – in September, after complaints were raised over the research.
Autistic activists and campaigners have taken to Twitter in recent months to voice their opposition to Spectrum 10K over an alleged risk of “eugenics”.
Researchers insist that the study will not look for a cure for autism, with the University of Cambridge’s Autism Research Centre being “ethically opposed to any form of eugenics”.
In an update received by Liam O’Dell on Friday, a HRA spokesperson said the watchdog has since reviewed the “significant amount” of feedback raised with them about Spectrum 10K.
“As a result, the REC has requested further information from the research team, and that some changes are made to the supporting documentation for the study.
“The HRA and the REC have reflected on the ethics opinion issued to the study in June 2020. Whilst the original opinion – which was issued after a thorough review of the study and extensive dialogue with the research team – still stands, some of the issues raised as part of the complaints process could have been considered during the original review.
“We have committed in light of this to identify whether there are any areas of learning which could be shared with RECs more widely, in order to assist with future review processes.
“For now, the further information requested from the study team is important to facilitate progression of the research.
“The HRA has written to complainants today with an update on its investigation into concerns raised and committed to update its website with progress so far,” they said.
When asked what further information has been requested, the spokesperson said the list is not short and “will help us to be able to assess whether any action is required from us”.
They added: “Some of it is based on requests from the complainants, and some has come from the REC which has considered the complaints raised and identified where they would like more information.”
Liam O’Dell has since requested a copy of the list of requested information, and contacted the second REC – Scotland A-REC – to ask for an update on their opinion of the study.
The news comes the same day that it was revealed that the PR firm hired by Spectrum 10K, Four Communications, no longer works with the study team.
“We only worked with them on the launch month, as they don’t have budget to have a PR/media company on retainer,” a spokesperson said.
By Liam O’Dell. Liam is a Deaf, dyspraxic and autistic freelance journalist and campaigner. This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below:
- Researchers hope knowledge from DNA study will lead to ‘improvements in autism’
- Health official slammed ‘messy’ ethics application from controversial autism DNA study
- Autism study ‘did not open’ at NHS hospital while project was paused, trust says
- Researchers warn NHS Trust not to respond to Twitter ‘trolls’ criticising autism DNA study
- Team is ‘welcoming and respectful of all autistic people’, researchers say
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