Cambridge study faces continued backlash from autistic community

Spectrum 10K, a study into factors contributing to autism and autism-related health conditions, was paused on 27 September 2021 in response to backlash from the autistic community. An open letter of concerns regarding the study has since been released by Boycott Spectrum 10K, a campaign led by members of the autistic community.

Boycott S10K has also published a version of the letter that seeks to improve accessibility to the campaign, which is composed of “plain language summaries” of the full statement.

The letter cites concerns of “how the data from genetic research could be used.” It calls for “clear information about what the regulations around biodata are,” including regulations that outline the criteria for its future use.

Spectrum 10K has released a disclaimer stating that anonymized data may be provided to “commercial collaborators,” “highly secure research databases” and “potential academic collaborators.”

Boycott S10K also points out fears of “eugenics-based science and the potential development of screeners.”

Screeners, as defined by the campaign, are prenatal tests that identify autistic children and “give parents the opportunity to abort them.”

The campaign identifies historical precedent of the development of screeners for disabilities that are not life-threatening. For instance, the screening for Down’s syndrome is now offered by the NHS between weeks 10 and 14 of pregnancy.

Spectrum 10K described their ultimate goal as an improved understanding of the factors driving the health and wellbeing of autistic people. Through this improved understanding, the study aims to enhance the quality of life for people with autism.

However, the opposition raises questions regarding the lack of autistic involvement, arguing that “any consideration as to what constitutes autistic quality of life will have been made by non-autistic researchers.”

Oscar Sharples, an autistic Cambridge student, spoke to The Tab, saying “Spectrum 10K threatens to pose an incredible amount of harm to the autistic community.”

Spectrum 10K has not provided confirmation that “openly autistic, or any autistic researchers have been involved in the creation or design of the study.”

However, the study has “decided to pause any further recruitment of new participants” until a consultation is co-designed and conducted with autistic people. In its latest update (28 October 2021), Spectrum 10K claimed it was working “to decide who should be involved in co-designing the consultation.”

If you would like to express support for Boycott S10K, their open letter can be found and signed here.

Feature image credits: Gleb Vinnychenko

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