The favourable opinion of a Cambridge study which looks to obtain autistic people’s DNA to investigate “genetic and environmental factors” affecting their wellbeing “still stands”, the UK’s health research watchdog has said.
Spectrum 10K, which has attracted criticism from the autistic community over fears it amounts to “eugenics”, will continue to operate after the Health Research Authority (HRA) concluded its eight-month investigation into the project.
In an update issued on Friday, the regulator said: “As part of our consideration of the issues raised, the HRA and the REC have also reflected on the ethics opinion issued to the study in June 2020.
“While the original opinion, which was issued after a thorough review of the study and extensive dialogue with the researchers, still stands, we believe that some of the issues raised as part of the complaints process could have been considered during the original review.
“In light of this, we have committed to identify if there are any areas of learning that could be shared with RECs more widely to assist with future review processes. Furthermore, we will be conducting an internal review of the original REC review, this will assist in our reflection on the lessons that can be learnt from our review of this study.”
Spectrum 10K has been approached by this website for comment.
Prior to the study’s launch at the end of August, two of the HRA’s research ethics committees (RECs) – London Queens Square and Scotland A-REC – issued favourable opinions of the project allowing it to go ahead.
However, in a HRA letter sent in November, the organisation told Spectrum 10K an REC “may review” such an opinion following public concerns if they “present new information not originally considered” by the committee.
These details can be related to areas such as a study’s scientific value, safety risks, or the “competence or conduct of the sponsor or investigator(s)”.
The HRA confirmed at the time that “the original ethics opinion” still applied, but that further information requested by the regulator would help “facilitate progression of the study”.
The document went on to request a response to “allegations that ambassadors have used racist and transphobic language” and details of any study team members with “links to the development of Applied Behaviour Analysis, Cure Autism Now or Autism Speaks”.
While a request from this website under the Freedom of Information Act to obtain Spectrum 10K’s reply was refused, the study team told Liam O’Dell late last year that they are “welcoming and respectful of all autistic people, including those who are transgender”.
The full letter can be found on the HRA’s website.
This is a breaking news story, with updates to follow.
Update – 16/05/22 – 10:47: Following allegations concerning the “conduct of the study’s ambassadors”, the individual concerned “has assured the study team that this was not their intention”.
In her letter to complainants, Information Governance and Complaints Manager Susannah Keeling wrote: “[The ambassador has] been reminded of the need to be respectful and to maintain high professional standards. The ambassador has also been asked to remove their ambassador status from their social media profiles in order to distinguish between their private views and those associated with the project.
“The sponsor [Spectrum 10K] has apologised and acknowledges that their response to the concerns raised fell below appropriate standards.”
It comes after Spectrum 10K told this website it was “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 ‘Data Access Committee’
Spectrum 10K confirmed the “membership and structure, methodology [and] decision-making processes” of a committee which will oversee data sharing between Spectrum 10K and third parties will be agreed as part of the study team’s ongoing consultation.
“No member of the research team has published opinions or is conducting research that contradicts the aims of Spectrum 10K”
Responding to allegations about eugenics, the Spectrum 10K team said they believe “aspects of some published articles have been misinterpreted or taken out of context, with some people incorrectly believing that the researchers are seeking a prenatal test for autism”.
They repeated their stance that the researchers and the Autism Research Centre at the University of Cambridge are “ethically opposed to any form of eugenics”, adding that autism is “an integral part of human neurodiversity”.
The HRA letter reads: “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 sponsor has advised us that they do not believe that it is unethical to collect genetic data from autistic people if the intention of collecting the data is to increase understanding about which genes influence particular outcomes. They believe that this will ultimately lead to better help and support for those who need it in the future.”
Elsewhere, the project’s lead investigators made a distinction between autism and “severe neurodevelopmental disorders”, describing the latter as “disorders in which the individual may have developmental delays, intellectual disability, epilepsy, and/or motor coordination difficulties, as well as potentially impaired development of other organs”.
The HRA letter adds: “They believe it is important to distinguish seeking a cure or treatment for such co-occurring conditions, from seeking a cure or treatment for autism itself. They would like to be clear that none of the PIs support seeking a cure or prevention of autism.”
“No concerns raised” over appropriateness of Simon Baron-Cohen as investigator
The HRA said it was informed by Spectrum 10K that “neither the ARC nor Professor Baron-Cohen have links to [Applied Behaviour Analysis]” – a widely criticised practice on autistic individuals which has found to increase symptoms of Post-Traumatic Stress Disorder – with Professor Baron-Cohen “having written against ‘radical behaviourism’ (of which he would see ABA as one example) as far back as 2014”.
The letter continues: “We have also been advised that the ARC and Prof. Simon Baron-Cohen, along with approximately fifty organisations across Europe including other UK universities, are involved in a study called AIMS-2-TRIALS, which receives some support from Autism Speaks.
“A predoctoral fellowship that ended in 2012, ‘Hypersensitivity in autism: a psychophysiological and neuroscientific approach’, was funded by Autism Speaks.
“Additionally, researchers at the ARC have used pseudonymised genetic and questionnaire data collected as a part of the Autism Genetic Resource Exchange (AGRE), a database funded by Autism Speaks.
“As a part of Spectrum 10K, researchers plan to analyse summary genetic data from multiple datasets, which, subject to approvals, will also include data from AGRE.”
Cure Autism Now
It was previously revealed that Dr Daniel Geschwind, co-principal investigator of Spectrum 10K, “guided development of the Autism Genetic Resource Exchange, founded by Cure Autism Now, and now a program of Autism Speaks”.
In a statement to Indy100 last year, Dr Geschwind said: “Cure Autism Now (CAN) was founded by parents of children with autism in the late 90s to fund research and bring attention to autism. CAN was acquired by Autism Speaks and has not existed for over 10 years.”
Now, following the HRA’s investigation, the regulator was informed that Dr Geschwind “chaired CAN’s scientific advisory board as a neurologist”, but his research “was never funded by CAN, nor did he receive money from CAN for his involvement”.
The letter reads: “Whilst CAN was committed to broadening awareness and understanding of autism, language, concepts and priorities of the autism community have changed over time and the aims stated by CAN nearly twenty years ago are not in line with the aims and values of Spectrum 10K, which Dr Geschwind shares.
“We have been informed that when Autism Speaks took over CAN, Dr Geschwind was on its Scientific Advisory Board. However, he has not been involved with Autism Speaks for over a decade.”
More than 4,300 people have signed up to Spectrum 10K prior to its pause
When asked about what proportion of current participants lack capacity and “required the advice of a consultee”, Spectrum 10K informed the HRA that 99 people “registered as carers of an autistic adult with an intellectual disability who lacked capacity to consent for themselves”.
The letter goes on to reveal that this is 2.2% of 4,388 participants who have registered and consented to take part in the study.
Another part of Spectrum 10K’s response confirmed that all withdrawal requests have been actioned.
Update – 25/05/22 – 10:20: Responding to a request from Liam O’Dell for a statement about the HRA concluding its investigation, the Spectrum 10K team declined to comment.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles in this series below: