The researchers paused the project and announced the three-stage consultation in September, after autistic people raised concerns around the ethics of the genetic research.
In a statement released at the time, principal investigator Simon Baron-Cohen acknowledged the study team “were not clear enough about the aims of the study” and that “aspects of our study need further discussion”.
A month later, researchers revealed the consultation process would be split into three phases, with the first involving “approximately 15-20 autistic people (and some parents/carers) to decide who should be involved in co-designing the consultation”.
The agreed group will then co-design the consultation in the second phase and ensure “autistic people will be consulted from a wide range of backgrounds”, while the third and final phase concerns the running of the consultation itself.
“We are currently having initial discussions as part of Phase 1, facilitated by an independent organisation, Hopkins Van Mil. They are experienced at designing, facilitating and reporting on stakeholder engagement programmes relating to complex and sensitive issues,” Mr Baron-Cohen wrote.
Recent projects listed on Hopkins Van Mil’s (HVM) website include public consultations on whole genome sequencing for newborn screenings and biometric data.
This website has since learned that the first phase of the Spectrum 10K consultation carried out by HVM will take place on Zoom on 24 January, with autistic adults invited to take part in the two-hour long confidential call “with one or two members of the Hopkins Van Mil team and up to five other autistic adults”.
All attendees involved will be paid at a rate of £20 per hour for their time.
In an invitation to participate in the phase one research, the Spectrum 10K team claims “thousands of people registered at our website” following the launch, but they also received “a large number of messages of concern”.
They add these include “the potential for autism genetics research to inadvertently lead to a prenatal screening test and therefore prevention of births of autistic babies (sometimes referred to as eugenics)” and “the belief that the research team supports the idea of prenatal screening for autism”.
The document also goes on to add that the team have “received suggestions to include more people” in phase one, and are “acting on this”.
“After the consultation we will review the discussions that have taken place and make changes to the study where appropriate, before restarting the study.
“The exact content of these phases will depend on the consultation process. We cannot say now what this will entail until we hear what the autism community has to say,” they continued.
The full invitation can be found on the National Institute for Health Research’s People in Research website.
Update – 17:35: When asked by Liam O’Dell what the research team would do if the consultation group conclude Spectrum 10K should be stopped altogether, a spokesperson for the study said: “The Spectrum 10K consultation will be co-designed with the autism community and the details of how it will work are therefore not yet known.
“Details will be published via the Spectrum 10K website when they are available.”
They also confirmed they are “working on” their response to the Health Research Authority’s (HRA) request for further information as part of their investigation, after complainants were told they would receive an update on the regulator’s work on Friday.
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
- Controversial autism study considered £10,000 ‘prize draw’ to encourage participants
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