The independent agency carrying out a consultation of the controversial Cambridge study Spectrum 10K, which was paused in September 2021 amid fears the project amounted to “eugenics”, has published details of five webinars to take place across May.
The University of Cambridge study, which looks to collect 10,000 DNA samples from autistic people to understand how “genetic and environmental factors […] contribute to the wellbeing of autistic individuals and their families”, is currently in its third and final stage of its consultation with the autism community.
Initially meant to take place in “mid-January”, a survey to collect views on Spectrum 10K was finally published in March and will now remain open until the end of May.
Speaking when the survey was first launched, the study’s principal investigator Professor Sir Simon Baron-Cohen said: “This study has generated lots of really important issues including bioethical issues and some concerns. The consultation is just going to give us space to hear a diverse range of voices that we hope are representative of the different autism communities.
“What we’re really hoping is that not only will this improve the study […] to help us understand how to do genetics research in autism safely, but also I think it’s going to really help change the way autism research happens in the future.”
Alongside confirming the closing date for the consultation survey, independent agency Hopkins van Mil (HVM) also revealed there would be five free webinars taking place over the coming weeks focussing on different elements of the project, as well as drop-in sessions with the consultation team.
The five webinars will focus on “aims of the study”; “ethics and values”; “inclusion of those who can’t consent”; “data collection and management” and “any other topics about improving or changing the Spectrum 10K study”.
Each session will last 90 minutes, with participants able to “ask questions in the chat”.
It is not yet known if rest breaks will be incorporated into the agenda.
The dates and times for the webinars are as follows:
- Aims of the study: 10 May, 12:30pm-2pm
- Ethics and values: 15 May, 12:30pm-2pm
- Inclusion of those who can’t consent: 17 May, 2:30pm-4pm
- Data collection and management: 24 May, 11:30am-1pm
- Any other topics about improving or changing the Spectrum 10K study: 24 May, 1:30pm-3pm
Meanwhile, drop-in sessions for those with questions about these five areas – held by HVM and autistic researcher Leneh Buckle – will take place on the following dates:
- Aims of the study: 10 May, 6-7pm
- Ethics and values: 20 May, 10-11am
- Inclusion of those who can’t consent: 22 May, 6-7pm
- Data collection and management: 25 May, 12pm-1pm
- Any other topics about improving or changing the Spectrum 10K study: 26 May, 1pm-2pm
More information about the online sessions, including sign-up details, can be found on HVM’s website.
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This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.
Liam O'Dell 