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Autism study on hold after concerns about genetic data use

20 September 2021
Appeared in BioNews 1113

A major autism study has been paused over ethical concerns.

The Spectrum 10K study was launched last month aiming 'to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families'. The study has now been paused in response to concerns expressed by some autistic people and campaigners, about an alleged lack of transparency regarding the project's aims, and about the possibility of resulting data being used in an attempt to cure or eradicate autism altogether.

Announcing a pause of several months, project leader Professor Sir Simon Baron-Cohen said 'From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion.'

The study is a collaboration between scientists from the University of Cambridge, Wellcome Sanger Institute, and the University of California Los Angeles. They plan to collect genetic and survey data from 10,000 autistic people and their relatives.

More than 4000 participants had already signed up to give DNA samples, but no further genetic material will be collected or analysed whilst the consultation is ongoing, though it is still possible to register interest in the study.

Spectrum 10K has been clear from the outset that it is not seeking a cure for autism or to prevent associated genes from being passed down. It aims to investigate genetic causes of conditions more commonly found in autistic people, such as epilepsy and gastrointestinal problems as well as understanding external factors that influence quality of life for people with autism.

However, there are concerns that genetic data gathered as part of the project could be used in the future by other researchers to develop prenatal screening tests for autism, and these have been fuelled by a disclaimer that anonymised data from the project may be shared with 'commercial collaborators'.

Emma Dalmayne, CEO of Autistic Inclusive Meets (AIM) said that pausing the project had not addressed her concerns: 'They still have not given any clarification of proposed safeguarding over this DNA.'

AIM and other groups opposed to the project are planning a protest in October.

Autism DNA study on hold
The Times |  12 September 2021
Autistic campaigners to protest over study that sparked ‘eugenics’ fears
Disability News Service |  16 September 2021
Spectrum 10K is the largest study of autism in the UK
Spectrum 10K |  23 August 2021
Update from the Spectrum 10K team
Spectrum 10K |  10 September 2021
What is the Spectrum 10K DNA study into autism - and why are autistic people concerned?
Indy 100 |  29 August 2021
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Comment ( - 21/09/2021)
I seriously can't stand when Neurodiversity groups interfer with research for finding a cure for autism, and i'm autistic mind you.  Now that want to prevent prescreening tests to further force their ideology down others throats even though so many people with autism have had hard lives.  It's a sad world we live in.
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