Summary of the Spectrum 10K Consultation (2021-2023)
In 2021, the Spectrum 10K study launched, to understand the genetic and environmental factors that contribute to autism and to autistic people’s health. Many autistic people and their families expressed their support of the study, but some were concerned. They felt that the study’s aims and objectives were unclear, and were worried that the results of the study could be used to harm the autistic community through the development of a prenatal test for autism that could lead to prevention of autistic people (eugenics).
The Spectrum 10K team have always been explicit about their opposition to eugenics and the development of a prenatal test, for example in this article published in New Scientist. For more information, see a statement of the Cambridge University Autism Research Centre’s Values. Nevertheless, the research team felt that the concerns raised deserved to be taken seriously. They decided to pause the study to enable a wider consultation, so they could understand these concerns more deeply and to find out how the study could be refined and improved in light of these.
The decision to pause the research had the full support of the Wellcome Trust who funded the study, as well as the University of Cambridge, the local NHS trust who sponsored the study, the NHS England Ethics Committee and the Health Research Authority (HRA) who confirmed there had been no breach of the ethically approved protocol for the study. These bodies all saw this as an opportunity to model how scientists and the people they study can have a respectful dialogue to fully explore bioethical issues in research, particularly when genetic data is being collected.
To ensure that the consultation engaged as many autistic people as possible, the study team brought in Hopkins Van Mil, a company specialising in independent facilitation, to co-lead the consultation. Autistic researcher Dr Leneh Buckle was appointed in Phase 2 as an additional co-lead. Leneh’s co-leadership role was particularly important as she brought an autistic perspective into the design and analysis of the consultation and helped to ensure that autistic voices were kept central throughout the consultation process. Her appointment was one of the recommendations from Phase 1 (see below), which the research team thought was an excellent suggestion.
The Spectrum 10K team wanted to incorporate as many suggestions from the autistic community as possible and to ensure their community engagement was meaningful and non-tokenistic. To this end, at every stage of the consultation, the team included both people who were supportive of the study and those who were critical of it. They also included autistic people from a wide range of demographics to ensure diversity of gender, ethnicity, geographical location, and with varying disabilities and co-occurring conditions. These included autistic people who could speak and those who were minimally speaking, and those with co-occurring conditions such as ADHD, dyslexia, and co-occurring medical conditions such as epilepsy and gastro-intestinal pain. They also included parents or carers of autistic people so that the needs of autistic people with learning disabilities who lacked the capacity to participate directly had a voice. This was important to ensure that the consultation was genuinely reflective of the breadth of views of autistic people.
The consultation was split into three phases.
Phase 1 was carried out between December 2021 and February 2022 (3 months in duration). The purpose of Phase 1 was to seek opinions about who should be involved in the co-design of the consultation. Eight virtual meetings were held via Zoom, each facilitated by Hopkins Van Mil, and included between one and six participants. In total, 29 people engaged in Phase 1, plus the Spectrum 10K team. 23 of these participants were autistic and 6 were non-autistic parents/carers, clinicians or charity representatives. You can read more about Phase 1 of the study, including the recommendations made by participants, here. A key recommendation from Phase 1 was to appoint an autistic person as a co-lead.
Phase 2 was carried out between March 2022 and October 2022 (6 months in duration). During Phase 2, we invited a larger group of autistic people to help co-design the consultation, including a survey, to ensure the consultation was both accessible and relevant to the priorities of autistic people. Phase 2 involved discussions and activities in workshops, in a dedicated online space, in one-to-one interviews, and in meetings. 95 autistic people took part, including some who had a learning disability and some who were parents of autistic children. 16 non-autistic parents/carers of autistic people also took part in Phase 2. We selected participants to ensure that a diverse range of views were heard and we included a range of genders, ages, ethnicities, support needs, and experiences. You can read the Phase 2 report here.
Phase 3 was carried out between November 2022 and June 2023 (6 months in duration). During this time, a consultation survey was launched online and promoted via social media and through media organisations such as Spectrum News and BBC Newsnight. This was a comprehensive survey that allowed respondents to make their views known on many aspects of the study design, while also providing space for them to expand upon and explain their responses. To ensure that everyone who wished to respond to the consultation was able to, the survey was also available in an easy-read format. In addition to the survey, the study team ran a series of five online webinars, which covered the following topics:
- The aims of the study
- Ethics and values
- Inclusion of those who can’t consent
- Data collection and management. (This topic included data sharing)
- Any other topics about improving or changing the Spectrum 10K study
These webinars provided a forum for members of the community to ask questions about the study and provide feedback directly to the Spectrum 10K team. Leneh Buckle and Hopkins Van Mil also ran a series of accompanying drop-in sessions on the same topics, to provide a further opportunity to discuss Spectrum 10K. Over 500 people filled out our survey and gave feedback on the study, including 409 autistic people. 88 parents/carers/partners or other family members of autistic people also responded to the survey.
Following the survey, in June and July 2023, a co-production group of 9 autistic people worked together with Spectrum 10K researchers to make detailed changes to the design of the study, in line with what was asked for in the consultation.
At the time of writing, and between July 2023 and August 2023, analysis of the consultation is being conducted, and a final report is expected in the autumn of 2023.