Many autistic people, activists, and parents of autistic children have expressed concerns over the University of Cambridge’s Spectrum 10K study. Dubbed as the largest ever study of autism in the United Kingdom, it is aimed at investigating the effect of genetic and environmental factors on autistic people. Some people fear it amounts to eugenics, while others feel it may lead to a data security breach.
Cambridge University in collaboration with the Wellcome Sanger Institute and University of California Los Angeles was hoping to recruit 10,000 people with autism to collect their DNA samples and questionnaire responses. Shortly after the announcement was made, several concerned stakeholders took to Twitter to express their concerns, and hashtags like #StopSpectrum10K and #BoycottSpectrum10K started trending.
Hi I’m Frances and I’m Autistic.
I am Student Paramedic, volunteer first aider and a huge gamer.
I am not a disease. I do not need to be cured. I am also definitely not a product of the vaccinations I had as a child. #StopSpectrum10K#ActuallyAutistic#BoycottSpectrum10k pic.twitter.com/9kpYWarQaF
— Frances (@Frances_FFA) September 9, 2021
Hi, I’m Nika. I’m a mother, a respected professional in my field, and I read speculative fiction as if it’s my job (not my field, sadly, but I wish it was). I’m #ActuallyAutistic, and my autism is part of who I am and is #NotADisease. #StopSpectrum10K
— if you have ghosts (@youhveverything) September 10, 2021
Apart from the fear that this study could translate to eugenics, there were also concerns about data security. One of the study’s disclaimers mentions that in certain cases, anonymized data collected for the study may be shared with potential academic collaborators or highly secure research databases, or even with commercial collaborators. The official Twitter handle of Spectrum 10K addressed these concerns and issued clarifications.
Q: Will my data be sold on at any point during or after the study?
No, your data will not be sold at any point during or after the study.
21/— Spectrum10K (@Spectrum_10K) August 24, 2021
Q: Do you support a cure or eugenics?
We have clearly stated on our website that we are not searching for a cure and are opposed to eugenics. 28/— Spectrum10K (@Spectrum_10K) August 24, 2021
However, in the light of growing negative feedback garnered by the study, the Spectrum 10K research team has issued an apology along with their decision to pause the collection of data for the study while they “conduct meaningful consultation with autistic people and their families.”
