News of the competition, which would have seen 100 registered participants given £100, was revealed in an application to the Wellcome Trust disclosed under the Freedom of Information Act.
News of the competition, which would have seen 100 registered participants given £100, was revealed in an application to the Wellcome Trust disclosed under the Freedom of Information (FOI) Act.
The prize draw, which was later decided against by the study team, was part of seven recruitment strategies laid out by Spectrum 10K in the document, with other areas for procurement including assessment centres, schools for autistic children, special educational needs (SEN) schools and media campaigns.
They also list research databases such as the Cambridge Autism Research Database (CARD), and local branches of the National Autistic Society (NAS).
Commenting on the proposed prize draw, a Spectrum 10K spokesperson told this website that funding “was not approved” for the competition “due to the nature of the prize draw”.
“In addition, on further discussion, it was decided that financial incentives for participation were not appropriate – the team wanted people to sign up because they were interested in the research, rather than for financial reasons,” they added.
The document was requested by neurodivergent researcher Panda Mery, and includes a breakdown of the £3.2 million funding total applied for by Spectrum 10K. They listed the full total economic cost of the project as more than £4.6 million.
Around £1.3 million was asked for to go towards salaries, while £375,000 was requested for 30,000 Oragene kits. The postage costs for delivering the equipment and having them returned was given as £100,000.
£192,000 was requested for “obtaining NHS numbers via triangulation”, with a PR campaign and advertising costed at £46,770.
This was made up of a quote for a campaign (£40,625) given by an unnamed company, and social media advertising (£6,145).
Although the name of the firm could not be given in the document, information previously obtained by Liam O’Dell confirmed that Four Health Communications were hired by Spectrum 10K for the month of the project’s launch.
Alongside costs, the application also reveals more information about the aims of the study and its analysis.
Academics write that “we need to identify modifiable risk factors for autism severity” and “investigate the condition from a developmental perspective to identify contributors to […] co-morbidity and poor subjective well-being at specific developmental stages”.
Commenting on the use of the term “autism severity”, the Spectrum 10K spokesperson told Liam O’Dell the phrase was used to “refer to factors that could severely impact on the person’s ability to function and on their quality of life”.
“These are often co-occurring conditions, such as severe epilepsy, severe gastrointestinal problems or severe learning disabilities. Genetic research has the potential to identify how these co-occurring conditions could be modified,” they said.
The project will also allow researchers to “investigate if there are genetically-defined subgroups within autistic people”, with “fewer than 100 genes” identified as having links to autism.
In response to a question about whether subgroups could lead to autistic people being ‘segregated’, the spokesperson added: “Identifying subgroups within autism is part of the wider field of precision medicine, which uses subgroups to provide individualised care and support, rather than a one-size-fits all approach for a given condition. This is about identifying people who may want and benefit from particular treatments or support.
“We have seen no evidence that this would lead to segregation of autistic people. As stated elsewhere, we value all autistic people equally, regardless of their support needs.
“We will continue to call on society to do the same and are very willing to discuss these concerns during our consultation.”
As well as subgroups, team members wish to “understand the effects of autism on typical brain development”; and identify how polygenic scores contribute to speech and motor development, “peer networks and social relationships”.
The electronic health records for autistic participants and “first-degree relatives” will be linked to other data to “investigate the impact of parental mental health” on the phenotype (observable trait) of the participant.
Another aim for the analysis is to “reposition drugs in autism”.
When asked what their response would be to those who argue that autism does not need to be ‘treated’ – with drugs or otherwise – Spectrum 10K said: “For some people, there are aspects of autism or co-occurring conditions that severely affect their quality of life. Some do want help, or medication in these areas.
“We believe that treatment, including medication, should be available and effective for those who want it.”
Elsewhere in the application, Spectrum 10K told the Trust there was “no tangible risk” the study “could generate outcomes that could be misused for harmful purposes”.
This is despite project leader Simon Baron-Cohen telling Spectrum News in 2019 there was “no way that we can ever say that a future political leader or a scientist won’t use [genetic] research for eugenics”.
Responding to this point, the study’s spokesperson said the team “understood the word ‘tangible’ to refer to an existing, concrete risk”.
“Researchers cannot guarantee that their research will only ever be used for purposes that fit with their own values.
“At the time of submission in 2018, there were no tangible (concrete) risks that we were aware of. This remains true today. We know of no organisation nor researcher currently using such data for malicious purposes, or planning to do so.
“We expect to discuss these concerns with the community during our consultation,” they concluded.
On the data itself, Spectrum 10K said that participants who withdraw from the study less than 30 days after registering will see “all of their data” removed from the project.
They added that “subsequent withdrawals” will be carried out “prospectively”, meaning they will be “removed from all future studies” from the point when the request was submitted.
The study will “prioritize [the] number of participants recruited over representativeness of the cohort” and “exclude anyone who we suspect may have a non-genetic cause of autism”.
Researchers expanded on this to say this would mean those with a history of pre-term birth; extensive prenatal/perinatal complications or brain injury, “including being in NICU [neonatal intensive care unit] for more than three days post-birth”; “a developmental or early acquired injury, disease, or abnormality with known effects on the brain”; or “severe early malnutrition or other potentially environmental contributing cause”.
Responding to a question about participant representation, Spectrum 10K told Liam O’Dell: “This decision to prioritise participant numbers was made because of the statistical power required for this research (i.e. large sample sizes are needed in order to get robust results).
“However, the team will seek as representative a UK sample as possible, and for this reason has included people with severe disabilities and children. Published papers are expected to comment on demographic information, including mentioning whether their sample can or can’t be seen as representative of the wider population.
“In addition, by seeking as many participants as possible, we hope to increase representation of allgroups, including minority groups, across intellectual ability, sex, gender, sexual orientation, and ethnicity.”
The application also includes statements of support from other individuals and organisations – the identities of which have been redacted under FOI exemptions.
One writes: “As you will be aware, only a tiny fraction of the heritable component of autism has been discovered to date, hugely limiting efforts to better understand the aetiology [cause], disease sub-classification and prediction of this disorder.”
“Given the immense genetic heterogeneity [multiple genetic causes] in autism, a world-wide collaborative effort is needed to identify genetic variants that contribute to autism risk,” comments another.
The third and final supporter given in the document says: “I am very enthusiastic to collaborate on this study as it is important and complementary to existing efforts and will move the field ahead.“
They go on to add that they have been “actively involved in delineating the polygenic risk for autism” – with “polygenic” referring to when multiple genes come together to produce a trait.
The full grant application is available to view and download on the What Do They Know website.
With thanks to Max Fisher for their advice and guidance on the scientific terminology used in this article.
Update – 15.12.21 – 20:25: In a statement issued to Liam O’Dell, the National Autistic Society said they declined to get involved in the study when approached, meaning people weren’t invited to participate and their volunteer-run branches weren’t asked to take part.
“We can only assume that the reference to our branches in the university’s application (which we assume was 2018 or before) reflected one of the hoped-for routes being considered by the research team at the time as they were planning the project.
“When we got enquiries from individual branches in the days immediately after the launch, we made clear that we were not involved in the project and that there had been questions and concerns about the project, particularly around privacy and DNA.
“As you’re aware, we added a story to our website with more details about the concerns and what we’re doing about it soon after, and then updated this when the study was paused,” the spokeswoman said.
They explained that while branches are asked to seek approval from Head Office to take part in or promote studies, individual volunteers from these branches could opt into the research in a strictly personal capacity.
Ian Dale, head of research, monitoring and evaluation at the charity, added: “We want more research into autism, focused on how best to support autistic children and adults with the biggest challenges they face.
“We were approached to be involved in Spectrum 10K, but declined to be part of the project, its promotion and the recruitment of participants – via our branches or any other channel.
“Many autistic people and a number of researchers raised serious concerns about the project when it launched, particularly the nature of the consent being sought, the collection of DNA samples and how this could be used in the future. We wrote to the Spectrum 10K team to raise these important concerns.
“The research team have since rightly paused the study and committed to a wider consultation. This must address these important questions before the study team decide what do next and the changes to make.“
Update – 16.12.21 – 12:45: Liam O’Dell has approached Spectrum 10K for an additional comment, asking if the research was to identify “modifiable risk factors” such as co-morbidities, but modification would interfere with genes associated with an autistic person’s traits or characteristics, whether the team would advocate for treatment or other interventions regardless of this, in the pursuit of minimising these “risks”.
The spokesperson responded: “Spectrum 10K will not be developing treatments. It aims to understand the biology of autism and co-occurring health conditions.
“If such treatments exist in the future, we expect that it would be up to the individual to weigh up the risks and benefits in their particular case, having been provided with all the relevant information.”
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
- Research committee asks for ‘further information’ about study following complaints
- Health Research Authority’s request for further information about autism study revealed
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