The organizers of Spectrum 10K, a large-scale autism genetics study, have delayed publishing the results of a consultation that launched more than a year ago. The consultation aimed to address concerns about the project’s ethics and communication with the autistic community.
The study has already faced numerous setbacks and delays (see timeline below). When Spectrum 10K launched in 2021, it planned to recruit 10,000 autistic participants to answer research questions about health issues associated with the condition. Its organizers at the Autism Research Centre at the University of Cambridge conceived of the project as the largest autism genetics study in the United Kingdom to date.
But within three weeks, the study team had slammed on the brakes, pausing participant recruitment after an outcry from a range of groups, including autism charities, advocacy organizations and autistic community members. Critics said that the organizers had not been clear about how the project would benefit autistic people, and that there were problems with how the researchers planned to handle consent and DNA samples.
In response, the study team launched a consultation to gather feedback on the study’s design. The consultation, co-led by the agency Hopkins Van Mil and autistic researcher Karen Leneh Buckle, closed on 31 May 2023. In June, the project’s website announced it would publish results in late 2023, but the team missed that deadline. (As of 7 March 2024, the project website was down.) In January of this year, Hopkins Van Mil published a statement from Spectrum 10K saying that the full report would be available “in due course.”
Autism researchers and autistic people are following the consultation closely, says Heini Natri, a genetics researcher at the Translational Genomics Research Institute. The changes will set a precedent for future studies, she adds. “There’s lots of potential for raising the bar.”
Natri, who is autistic, participated in the consultation and says she was “left feeling hopeful that there will be big improvements.”
Neither Hopkins Van Mil nor the Autism Research Centre have specified a revised date for results to be made public. Hopkins Van Mil shared its report with the Spectrum 10K team in September 2023, according to the agency’s director, Henrietta Hopkins. “In line with many other detailed consultation processes we have run, Spectrum 10K are now taking time to think about the report and what it means for the study,” Hopkins says.
Leneh Buckle, who ran the consultation along with Hopkins Van Mil, declined to comment.
Simon Baron-Cohen, lead investigator of the study and professor of developmental psychopathology at the University of Cambridge, said in a statement to The Transmitter that “the scale of the consultation on Spectrum 10K is unlike anything we have done before.”
It involved more than 500 autistic people and their families or caregivers, and offered a great depth and breadth of feedback, he says. “We are taking time to fully understand and reflect on all the feedback received.”
