Further to thee piece on this week's Heritage Matters on SpectrumOnAir - these motes have been supplied by our interviewee, Sarah Morgan.
What:
Study with 10,000 Autistic people’s participation to “improve the wellbeing of autistic individuals” by gathering genetic and environmental factors that contribute.
Why:
Autism is a relatively new diagnosis (In past century) and studies are generally small and not generalisable. This aims to get a dataset that will. Allow for statistically significant results that can be used to help wellbeing in Autists
When:
study was launched to the public in the last month, but people had been. Contacted a year ago.
Community reaction:
Mixed, mostly negative - concerns about consent, data handling and motivation for study
Yes/no on consent form on:
Saliva sample - DNA will be stored long term which may include reading the entire genetic code, second sample if needed, data and DNA can be used. In future studies academic collaborators and external research databases, (optional) annonamysed data and dna shared with commercial collaborators and financial benefits will not be shared with participants.
Collaborators
Wellcome Sanger institute - 2019 allegations of commercial use of data collected from African studies - Stellenbosch university has demanded return of dna samples
Dr Geschwind - involvement in. ‘Cure Autism Now’ which has been folded into ‘Autism Speaks’ co-principal investigator
Spectrum10 ‘is being secured on UoC safe haven ‘ and will not be sold, during or after the study’
A grant specifies that the 10k will be combines with other databases across the world with Autistic genetic information to understand biology, improve diagnosis and investigate genetic subgroups
The Study Controversy
Subgroups are seen by some in the community as a dividing label that restricts rather than allows for the correct support needed by Autists. It also strengthens the supports of stigmatisation and misunderstanding of the condition
Spectrum10k recognise more needs to be done to explain the value of the study, the measures in place to protect data and other concerns.
Autistic people will be part of the committee on sharing data
No individual feedback on DNA - as not the resources to do so
Ambassadors are mostly white and able bodied
Cannot explain how they hope to improve outcomes
Further Resources
Spectrum 10K - spectrum10K.org
@commaficionado - Pete Wharmby
@AutSciPerson - Autistic Science Person
@AnnMemmott - Ann Memmott
@HolSmale Holly Smale
