The email correspondence from a member of the Spectrum 10K team is one of many messages obtained by Liam O’Dell from NHS Trusts under the Freedom of Information Act.
An academic from the University of Cambridge’s Autism Research Centre (ARC) – whose name was withheld under the Act – told Royal Wolverhampton NHS Trust not to “engage with trolls targeting Spectrum 10K on Twitter”, after a member of staff flagged concerns raised on the Trust’s social media pages.
The messages – sent in September – came after the Trust expressed an interest in becoming a research site for the study, which has sparked concerns from the autistic community over fears the project amounts to “eugenics”.
Spectrum 10K state that the research “does not intend to find a cure for autism” or “eradicate autistic genes”, and aims to spot “genetic and environmental factors that contribute to autism” and the wellbeing of autistic people.
After it was launched in late August, the study was paused weeks later to allow for a “meaningful consultation with autistic people and their families” to take place. A statement issued in October stated that the process would be split into three phases, with the first stage – involving 15-20 autistic people, parents and carers to decide who should co-design the consultation – currently underway following initial discussions.
In November, autistic activists demonstrated outside the ARC in Cambridge, as the #BoycottSpectrum10K campaign intensified.
The opposition from the autistic community was cited in the email from Royal Wolverhampton, referencing social media feedback which said the “autism community are against it”.
“When I spoke to the chair of our Parent Carer Forum yesterday about it, she felt the national comms don’t sufficiently explain the purpose of the study i.e. improving health care and tailoring support for support for those on the autistic spectrum,” the staff member wrote, adding that another organisation had removed details of the study from their website following “negative feedback”.
In response to the enquiry, a Spectrum 10K researcher thanked them for bringing the issue to their attention. “We are aware of the situation and preparing a response. In the meantime, we have posted a statement on Twitter and an automatic reply to the study email account.
“We recommend that you do not engage with trolls targeting Spectrum 10K on Twitter.”
The emails were part of more than 700 pages of correspondence between the Trust and Spectrum 10K, obtained by Liam O’Dell as part of a wider investigation using the Freedom of Information Act.
All but one of the 15 healthcare providers identified in documents submitted by Spectrum 10K to the Health Research Authority (HRA) were contacted by this website. As a service provider exempt from the FOIA, Medway Community Healthcare were not contacted with a request for information.
Out of 14 NHS sites, eight supplied correspondence between them and Spectrum 10K. Complaints to the Information Commissioner, over a failure to provide a response within the statutory 20 working day deadline, were filed in relation to four requests. Two are currently going through an internal review process over the initial decisions.
One response has already been published on this website, with Medway Maritime Hospital revealing that Spectrum 10K “did not open” at their location prior to the study being paused.
In response to an FOI request by this website, one NHS Trust listed on Spectrum 10K’s ethics submission responded to say they did not participate in the study.
University Hospitals Dorset NHS Foundation Trust (recently formed by a merger of Poole Hospital NHS Foundation Trust and The Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust) simply wrote in their response letter that “the trust did not take part in this research project”.
“Recent issues on Twitter”
Alongside the Royal Wolverhampton NHS Trust, concerns raised on social media were also flagged by Somerset Foundation Trust, with their Clinical Trials Support Officer writing in an email that they are “going to have a meeting with my manager next week about the best approach for advertisement in light of the issue of accruals and recent issues on Twitter.”
Meanwhile, a member of Cornwall Partnership NHS Foundation Trust’s research team wrote in an email on 27 August that it has “become evident in the past few days” that there “seems to be rising concerns” from the autistic community about Spectrum 10K’s intentions.
“On Twitter there appears to be increasing Tweets stating #StopSpectrum10K citing eugenics or how the study is trying to eradicate autistic individuals, as well as concerns about the DNA samples collected by researchers.
“Whilst we as a team can appreciate and have experience of working with research processes, as well as the background and intentions of the Spectrum10k Study, we are concerned we may be contacted by individuals who are opposed to the study.
“We are as a site are supportive of the study and are keen to recruit to the study and promote it, but are concerned about the potential reaction to contacting individuals with thoughts and feelings like those above,” they write, before asking researchers how they would like staff to “address and respond” to concerns.
A postponed “soft launch”
Documents also revealed more of the timeline for the study, with a previous launch date of 17 February postponed following a “programming error”.
“As final preparation, we were conducting a full review and testing of the website. Through this, the Spectrum 10K IT identified a programming error or ‘bug’ which prevents some of the registration data from being saved properly on the university’s server.
“As you can imagine, this would have significantly impacted the quality and completeness of the data collected from study participants,” a Spectrum 10K study member wrote in an email.
The researchers hoped that a “soft launch” would take place on 4 February “involving participants invited from our CARD study, and sites which have had their Site Initiation visit”.
“We ask that sites that have had their Site Initiation Visit wait until the 4th February to start recruitment.
“The ‘main launch’ will take place on the 16th February. Spectrum 10K will launch nationwide on the 16th February 2021. This will be supported by a nationwide PR campaign run by our PR partners Four Health,” they added.
The study was still marred with technical issues in June, when academics said that the study’s IT engineer “is resolving the final fixes with the database” and that they hoped to launch the project nationwide “in approximately one month”.
However, they continued to say that “this is not fully confirmed yet”.
The project eventually launched publicly at the end of August.
Spectrum 10K “don’t expect a high dropout rate” for participants
Elsewhere, emails from two Trusts revealed information about recruitment.
A clinical research officer at Kent Community Healthcare Foundation Trust said their original, proposed target for accruals was “200 per year”. Meanwhile, the Head of Research at the Clinical Research Department of East Sussex Healthcare NHS Trust said they “have not recruited any participants”.
In one message to NHS sites involved in the project, a Spectrum 10K researcher said that they “don’t expect a high drop out [sic] rate” for participants, referencing “previous studies” where 70% of those involved returned saliva kits.
Other groups were also suggested by health professionals, with Somerset asking researchers if they were “happy” with the inclusion of additional codes from the International Classification of Diseases (ICD).
A research nurse emailed: “I am contacting our information group who manage our electronic Rio patient records system to request an ad hoc data request of all patients who fit the diagnosis of autism.
“Could you please provide the ICD codes that are acceptable for inclusion within the study, or are you happy for the inclusion of the following ICD codes…”
They go on to ask if autistic disorder, Rett’s syndrome, Asperger’s syndrome and unspecified pervasive developmental disorders should be added to the study – as well as other pervasive developmental and childhood disintegrative disorders.
A response to this enquiry was not included in the documents disclosed to Liam O’Dell.
Another, earlier email, sent from an official from the National Institute for Health Research’s Clinical Research Network, suggested potential recruitment pathways for the upcoming study.
These included “schools with special educational needs (SEN)”, autism assessment centres and charities.
Away from Spectrum 10K, one email disclosed by Somerset showed one staff member from the Trust proposing a small “case series” on autism with “randomisation tests”.
“The intervention is for adults with ASD, so [Spectrum 10K’s] population and is a non-invasive method for regulating the autonomic nervous system [ANS].
“Impact would be measured via self-report (personal agency, embodied experience, levels of calm) and the (possible) measurement of Heart Rate Variability for physiological measure of the ANS being in or out of sync”.
The autonomic nervous system regulates unconscious processes such as heart rate, blood pressure, respiration and digestion.
In a statement, a spokesperson for Somerset NHS Foundation Trust said: “We actively encourage our staff who are thinking of getting involved in a research project, or just want to explore an idea for a research project, to contact our specialist research management team to discuss the feasibility and governance requirements of the proposed study.
“We initially reviewed this particular research idea in late 2019, but it wasn’t taken forward and the member of staff no longer works at our organisation.”
The six amendments
The correspondence also revealed a total of at least six amendments made to the Spectrum 10K study.
The first, made in December, concerned formatting changes to documentation; the removal of referral to an independent contact from Participant Information Sheets; “clarification of site-specific procedures” for sites in England, Scotland and Wales; changes to principal investigators at two NHS sites; and the addition of NHS Greater Glasgow and Clyde as a research site.
Amendment 2 also included changes to principal investigators; the “reformatting” of the easy read information sheet; and additional information about COVID-19, the Data Protection Act 2018, GDPR and the study’s partnership with the NHS.
Wordings were also revised in relation to the project’s timeline; clarification around “how genetic, questionnaire data and medical data will support autism research”; revisions to Spectrum 10K’s stance against eugenics; and further clarity over the definition of wellbeing and environmental factors.
Attachments to this amendment letter show the removal of text such as “sometimes, part of the genes can get lost and damaged” and “if we know more about genes, we may be able to help autistic people live happy lives” in the easy read document.
Meanwhile, changes to Spectrum 10K’s opposition to eugenics included the addition of a new line which states: “Spectrum 10K will not look for a cure for autism. The Autism Research Centre (The ARC) is ethically opposed to any form of eugenics”.
The third amendment, dated February 2021, referred to updates to the Frequently Asked Questions (FAQs) document “following consultation with our PPI [Patient and Public Involvement] group”. The two areas where clarifications were made concerned Spectrum 10K’s “explanation about genetic testing” and the “procedures in [the] event of participant withdrawal or request to delete their account”.
Liam O’Dell was unable to obtain documentation showing the specific amendments to the FAQ resource listed in Amendment 3.
The fourth amendment, raised in May, listed a further 20 NHS sites assisting in the research (17 in England, 3 in Scotland), which are different to the 15 listed in the HRA submission previously obtained by Liam O’Dell.
Amendment 5 in June concerned “changes to age-appropriate participant information sheets for children” to “clarify tasks and wording around study participation” – specifically around the participant questionnaires.
The final amendment revealed in the documents related to the pausing of the Spectrum 10K study, with the project team listing concerns over “data storage and sharing”, “collection of genetic material” and the “lack of wider consultation with the autism community”.
On the first point, the academics wrote: “We need to better define who we will share the data with, and for what research projects. We will do this with input from the autism community. We need to establish a data access and monitoring committee and develop a framework for evaluating requests for data collected from Spectrum 10K.”
They went on to add that concerns over the “collection of genetic material” related to “the risk that [it] could potentially lead to the development of a pre-screening test” which could eradicate autistic people “through the early termination of pregnancies”.
“Whilst we have been clear that we are anti-eradication of autism through a prenatal screening test and anti-cure for autism, we recognise that we need to do further community engagement to address these concerns, some of which may have arisen from misunderstandings about genetics research in autism,” they continue.
Finally, in relation to consultation with the autistic community, the Spectrum 10K team said they have “worked with a small advisory panel for over two years during the course of the study and the pause”, but admitted that they “need to consult and engage more widely with the autism community” due to different autistic people having “different perspectives and understanding of this research”.
The paragraph concludes: “We need to clarify concerns around consent that have been raised in relation to parents and carers registering their children, as well as consent in individuals who lack capacity to consent to research. We need to review the wording of participant-facing documents to remove any ambiguity.”
In a statement to Liam O’Dell, a Spectrum 10K spokesperson said: “As is standard procedure, a full review and testing of the website was carried out prior to the original planned launch date. This identified some areas that required further work, although these were not related to data security. The launch was therefore delayed until this work had been carried out.
“We recognise that the vast majority of critical comments about Spectrum 10K are made by people who are voicing legitimate concerns. This is why we are co-designing a consultation process in order to listen to as many of those concerns as possible.
“However, several members of the Spectrum 10K team have received online abuse. An email was written after somebody who was not a part of the core team reported ‘being trolled’ after receiving abuse on Twitter, and regrettably their language was echoed in this email.”
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’. You can read the first, second and third articles here on this website.
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Update – 07.12.21 – 19:00: Following conversations with Medway NHS Foundation Trust, it was confirmed that the Trust has not withdrawn from the study, but has not yet recruited any participants before the project was paused.
Sections of this piece have been updated to reflect this.