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The Spectrum 10K study was led by Simon Baron-Cohen, director of the Autism Research Center (ARC) at the University of Cambridge, UK
Is the gut microbiota related to autism?
But shortly after the high-profile launch of the study on August 24, autistic patients and some ASD researchers expressed concern that the study was conducted without meaningful discussions with the autistic group
Damian Milton, an intellectual and developmental disability researcher at the University of Kent in Canterbury, UK, is one of the signers of the "Boycott Spectrum 10K" petition
Due to strong opposition, the Spectrum 10K team suspended the study on September 10, apologized for the negative impact, and promised to have more in-depth discussions with autistic patients and their families
Fear of being screened
Even before the launch of Spectrum 10K, some autistic patients were uncomfortable with certain aspects of Baron-Cohen's research
Sue Fletcher-Watson, a psychologist who studies autism at the University of Edinburgh in the United Kingdom, said: “I think Simon has made some truly outstanding contributions to the theory of autism
Disgust with these theories is now covered by concerns about the genetic research of the Spectrum 10K project and how the research will share the data
Kieran Rose is an advocate for people with autism and a member of Boycott Spectrum 10K
The Spectrum 10K website states that it "is not meant to eradicate autism
Negotiate disputes
The autistic community is also frustrated that Spectrum 10K did not consult them for their opinions on the most suitable research for autistic patients
To address these concerns, the Spectrum 10K team is planning to consult with hundreds of autistic patients and their families, and intends to create a representative committee to oversee the project's data sharing strategy
In a statement, a Wellcome spokesperson said: "We fully support researchers' suspension and further participation in the work plan, which is in line with the principles of inclusive research
This pause may last for several months
Fletcher-Watson said: "I do think that research teams with this level of experience in autism research should anticipate this