The autism community will be able to share their thoughts on the controversial autism DNA study Spectrum 10K from “mid-January”, before improvements are made to the project from April next year, it has been confirmed.
The Cambridge project is currently working through its three-stage consultation process, after the study was paused in September last year following concerns it amounted to “eugenics”.
The first phase, which was carried out between December 2021 and February 2022, saw individuals decide who should help co-design the consultation survey in the second phase, and came with a conclusion that those in Phase Two should agree to “improve the study, not stop it”.
Last month Spectrum 10K announced that the independent community engagement agency Hopkins Van Mil (HVM) had concluded Phase Two at the end of October, with a report highlighting what was discussed at this stage to be published in “mid-November”.
The teams missed their own deadline, with the Phase Two report finally being published on Monday.
Who took part in Phase Two?
429 individuals applied to be part of the co-design process, of which 85% of the 111 confirmed co-designers (95 people) identified as autistic. 19 out of the 130 co-designers initially selected later concluded they couldn’t commit to being a participant.
In terms of their views on autism genetic research, only seven were either against or completely against the practice, as opposed to 39 who didn’t know or were undecided, and 65 who were either “quite supportive” or “wholly supportive”.
Around 22 to 24 individuals participated in four Zoom workshops (the same people each time), before joining an online space alongside 79 others to take part in “activities, polls and discussions” in their own time.
One-to-one interviews were carried out between eight co-designers and a HVM facilitator – either over Zoom or email.
Participants were paid £20 an hour for their involvement.
What are the consultation principles?
In addition to stating “autistic people must be a majority of the consultees”, co-designers also said the format of the consultation “should be accessible for any autistic person who wants to take part” and include “a staggered approach giving people time to reflect and form their opinions”.
Seven success measures for the final consultation have been suggested in the report, which include the survey being successful if “it includes a balance of positive, negative and neutral aspects of autism”, “it builds trust in the study and the research team” and “those involved act with openness and transparency”.
Four “overarching principles” for the consultation also surfaced from the second phase, which are to “build trust in the process”, “make real and positive change to the Spectrum 10K study”, “show that the consultation involves, and has been designed by, autistic people” and “create a space for constructive discussion”.
In relation to the first principle, the report reads: “This ties in to the concern that those who have called for a boycott of Spectrum 10K will refuse to take part in the consultation.
“This would be disappointing for Phase 2 co-designers, who want to ensure that all views on Spectrum 10K are considered, including those who have been critical of the study.”
“Some but not all” co-designers are said to have suggested excluding “anyone advocating for a cure for autism”, with concerns also raised around “pharmaceutical companies or anyone else with a clear financial conflict of interest”.
The report also acknowledges those taking part in the consultation will require statements from “critics of Spectrum 10K” in order to participate in the third and final phase.
What’s next?
The plan for the third and final phase of the consultation will see the finished survey launched in mid-January, before results are analysed at the end of the month in order to carry out “iterative dialogue methods” such as workshops and online forums to gather feedback.
Reporting and analysis will then take place in “late March” before a working group to “co-produce the changes/improvements” to the study meets from April 2023 onwards.
An executive summary of the report, as well as the report in full, can be found on the Spectrum 10K website, with an easy read version to be made available “shortly”.
Update – 16/10/23: A previous version of this report stated 19 individuals out of the 111 co-designers withdrew, when 19 people out of an initial selection of 130 people pulled out, taking the final number to 111. This has now been rectified.
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This report is the latest in his series ‘The Spectrum 10K Files’, with the full story of the controversial autism project explored in his upcoming non-fiction book, ‘Selling Out the Spectrum’ – to be published in 2024.
Read the previous articles online now.
Liam O'Dell