Researchers behind the controversial autism study known as Spectrum 10K have declined to issue a comment regarding its unredacted grant application to the Wellcome Trust, which has received an intense backlash after it was published last week.
Liam O’Dell shared details of the application on Saturday, in which researchers say the project plans to investigate “which tissues, gene-sets, cell types and developmental periods are enriched” for a “genetic risk of autism”.
This is despite academics telling research ethics committees and listing on its website that it will “investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families”.
The revelations from the Wellcome Trust application have reignited accusations that the Cambridge research – which looks to collect the DNA of 10,000 autistic people and their families – amounts to “eugenics”, a claim which the Autism Research Centre has responded to by saying they are “ethically opposed any form of eugenics”.
When approached for comment over the discrepancy, the Spectrum 10K research team declined to comment further, saying the issue will be “discussed in detail” during the upcoming consultation with the autism community.
Meanwhile, the Wellcome Trust did not say whether it would take any action as a result of the differences between the grant application and its public aims, with a spokesperson instead saying: “The NHS Health Research Authority [HRA] conducted a review of the ethical approval process of the Spectrum 10K study earlier this year, including the aims of the grant awarded to the researchers.”
They also directed Liam O’Dell to the review’s findings under section six, which referred to the “discrepancy between the stated aims of the trial and the methodology it uses”.
The HRA’s conclusions were published back in May, before the unredacted grant application was obtained by autistic researcher, Panda Mery.
Section six reads: “They [Spectrum 10K] have explained that the study had been designed to achieve the aim set out on the Spectrum 10K website, to understand how biology and experiences shape wellbeing for autistic people by combining genetics (which is why DNA samples are needed) with other data, such as questionnaires.
“In relation to concerns that the study documentation does not explain the aims of the grant awarded to the researchers, and in turn the grant award summary does not mention the published aims of the study, to improve autistic people’s wellbeing, the sponsor has informed us that they would like to clarify that the published aims are focused on understanding wellbeing.
“Where wellbeing is mentioned throughout their website and documentation, it is in relation to understanding how biology and experiences shape wellbeing. They see this type of research as forming an important early step in providing evidence that can be used to improve wellbeing in the future, with the direct improvement of wellbeing being outside of the scope of the current research grant.”
The HRA findings in this section make no explicit reference to the “genetic risk” line in the grant application, which does not mention the word ‘wellbeing’ at any point.
After an eight-month investigation, the HRA maintained its favourable opinion of the controversial research project back in May, saying that while some issues raised could have been considered during the initial review of the study, the opinion “still stands”.
When asked if it would continue to maintain a favourable opinion of Spectrum 10K in light of the difference in ethics and grant submissions, a HRA spokesperson said: “A Research Ethics Committee will check that a project has funding as part of its review, but does not see funding applications in detail.
“It is very common for proposals to develop as they go through the funding process and before they are submitted for approval. Applications are also frequently revised during the approvals process. We expect researchers to involve people as they develop their study, and so changes from initial grant application usually reflect learning by the research team, and improvements made following input from patients and the public.
“The funding application should not be taken as a description of the final, approved study.
“If there are concerns about a study which is applying for or which has ethics approval, these can be raised under our complaints process. The Spectrum 10K study is currently paused.”
Following concerns from the autistic community soon after its launch, the research project was paused to establish a public consultation, which is now set to take place from mid-January.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.
Liam O'Dell 