High-profile autism genetics project paused amid backlash - Nature.com
The Spectrum 10K study aims to collect DNA from 10,000 people with autism and their families.Credit: Getty?A large, UK-based study of genetics and autism spectrum disorder (ASD) has been suspended, following criticism that it failed to properly consult the autism community about the goals of the research.The Spectrum 10K study is led by Simon Baron-Cohen, director of the Autism Research Centre (ARC) at the University of Cambridge, UK.It aims to collect DNA samples, together with information on participants’ mental and physical health, from 10,000 people with autism and their families.
But soon after the study’s high-profile launch on 24 August, people with autism and some ASD researchers expressed concern that it had gone ahead without meaningfully consulting the autism community.Fears about the sharing of genetic data and an alleged failure to properly explain the benefits of the research have been raised by a group called Boycott Spectrum 10K, which is led by people with autism.
As a result of the backlash, the Spectrum 10K team paused the study on 10 September, apologized for causing distress, and promised a deeper consultation with people with autism and their families.Even before Spectrum 10K launched, some people with autism were uncomfortable with aspects of Baron-Cohen’s research.Behaviour seen in people with autism, Baron-Cohen asserts, sits firmly at the male end of this continuum.
The antipathy towards these theories is now overlaid by concerns about the genetic research planned by Spectrum 10K, and how the study will share its data.Kieran Rose, an advocate for people with autism and a member of the Boycott Spectrum 10K group, says he is worried that the research could lead to a prenatal screening test for ASD or related conditions.“A genetic study would be terrifying for lots of autistic people; there’s a long-established and well-known history around eugenics and disability,” adds Fletcher-Watson.
The autism community is also frustrated that it was not consulted by Spectrum 10K about the kind of research that would best serve people with autism.Autistica, a London-based ASD charity, initially lent its support to the study, but subsequently asked the Spectrum 10K team to remove its endorsement from study material
“There is a real need for a broader discussion between autistic people and their families, and researchers,” says James Cusack, Autistica’s chief executive
To address these misgivings, the Spectrum 10K team is now planning a consultation with hundreds of people with autism and their families, and intends to create a representative committee to oversee the project’s data-sharing strategy