Academics behind the controversial project have said that they are “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 comment, received by Liam O’Dell on Wednesday, also comes just days after this website revealed that researchers had told an NHS trust not to “engage with trolls targeting Spectrum 10K on Twitter” – a remark which has since angered autistic advocates online.
Spectrum 10K issued the statement as part of a response to five questions put to them in October, when the study’s submissions to two research ethics committees – the London’s Queen Square committee and Scotland A-REC – were obtained by Liam O’Dell following a Freedom of Information request to the Health Research Authority.
This website previously reported that details of an independent contact was not provided in the study’s participant information sheets, but after contacting Spectrum 10K, clarification was received that the information could be found in the document for carers of adult participants based in Scotland, who are aged 16 years or over and lack the capacity to make an informed decision. This article has since been corrected.
In one of the documents disclosed by the HRA, Spectrum 10K revealed the “primary outcome” of the study, which was paused in September in order to carry out a “meaningful consultation with autistic people and their families”.
“[Its purpose] is to understand the underlying biology of autism and its interaction with environmental factors. We hope that this new knowledge that will lead to improvements in autism, co-occuring conditions, and wellbeing of autistic individuals,” they wrote.
Another section of their submission stressed an “urgent need” to “evaluate interventions to improve clinical and quality of life outcomes”, and to “understand the biology of autism to improve detection, diagnosis and precision interventions”.
They also said that their analysis of participants’ DNA may identify “genetic variants associated with other conditions [such as] specific types of cancer” and “mis-attributed parentage”, but said that feedback on these issues would not be passed on to those taking part.
“As this is a research study, none of these findings will be of a clinical standard. Further, we do not have a genetic counsellor or a clinical geneticist on our team who can provide this information appropriately to participants minimising distress,” they said.
All three of these quotes were put to Spectrum 10K by Liam O’Dell, who asked what was meant by “improvements in autism”; what “precision interventions” referred to; and why the research team would be unable to refer the identification of a cancer-causing gene to a GP or take another form of action.
In response, the team said: “Points one, two and three will be addressed in detail during our consultation.”
Further details around Spectrum 10K’s “co-designed consultation” were revealed last month, with Cambridge professor Simon Baron-Cohen writing in an update that the process will be split up into three phases. Initial discussions are currently underway as part of the first phase, which Baron-Cohen said involves “working with approximately 15-20 autistic people (and some parents/carers) to decide who should be involved in co-designing the consultation”.
The group agreed in the first phase would co-design the consultation in phase two, before the third and final phase would involve running the consultation.
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, despite researchers saying it did
- Researchers warn NHS Trust not to respond to Twitter ‘trolls’ criticising autism DNA study
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