The Spectrum 10K consultation

The Spectrum 10K consultation is now closed. Thank you for sharing your views and opinions.

January 2024: Update from the Spectrum 10K research team

The Spectrum 10K team would like to thank everyone who has engaged with the study and this consultation so far. We are aware that our consultation participants have generously given us a tremendous amount of their time and energy to discuss issues that are deeply personal and important to them, and we are very grateful.

This valuable two year process with our consultation partners Hopkins Van Mil has resulted in contributions from over 500 people. The rich, detailed and thoughtful feedback we have received has given us much to reflect on and learn from since the consultation closed in the summer. We are now in the process of collating our responses to the consultation feedback and recommendations to explain what we have learnt, the changes we will make in how we conduct research studies and how and why we want to continue to engage with the autism community in a meaningful way. We are aware that our consultation participants, and the autism community more broadly, are awaiting this information and we would like to ask for your patience while we finish this process. The full independent report and our response will be published on both the Hopkin Van Mil website and the Spectrum 10K website in due course.

The consultation included a survey, webinars and drop-in sessions. The survey ran from the beginning of March 2023 until 31st May giving consultees 2.5 months to respond.

In addition five webinars were held. The webinars were an opportunity to ask the Spectrum 10K researchers questions about the study. The webinars covered the following topics:

Webinar 1: Aims of the study, Wednesday 10th May 12:30-2pm
Webinar 2: Ethics and values, Monday 15th May 12:30-2pm
Webinar 3: Inclusion of those who can’t consent, Wednesday 17th May 2:30-4pm
Webinar 4: Data collection and management, Wednesday 24th May 11:30am-1pm
Webinar 5: Any other topics about improving or changing the Spectrum 10K study, Wednesday 24th May 1:30-3pm

Transcripts from the webinars can be read by clicking on the topic title for each of the sessions above (in orange). These transcripts are based on audio recordings of the Q&A from each webinar. The only edits that have been made to them are to remove filler words (for example ‘um’) and repeat words. Occasionally, footnotes have been added to include clarifications provided by Spectrum 10K after the webinar.

Hopkins Van Mil and Leneh Buckle also hosted drop-in sessions on the same topics. These were an opportunity to discuss aspects of the Spectrum 10K study in addition to attending the webinars or responding to the survey.

Background to the consultation and what has happened so far

Who is running the Spectrum 10K consultation?

The Spectrum 10K consultation is being co-led by:

Hopkins Van Mil (HVM), which is an independent facilitation agency
Leneh Buckle, who is an autistic researcher working on a freelance basis for Hopkins Van Mil, and
Spectrum 10K

To the right of this page is a 4 minute film clip from the consultation co-leads. This gives information on who they are and why they are involved.

You can read HVM’s data protection policy here and ethical policy here.

What was the purpose of the consultation?

The purpose of the consultation is to improve Spectrum 10K, address concerns, and and make changes to the study based mainly on what autistic people say. Changes will also based on the opinions of others with an interest in improving the study, including family members and those who work with or for autistic people.

What has happened so far?

The Spectrum 10K consultation process began at the end of 2021. It had three phases:

Phase 1: deciding who should be involved in co-designing the consultation - report available here
Phase 2: co-designing the consultation - report available here and in Easy Read here
Phase 3: the consultation - the report will be available later in the year.

Where will I find information about Spectrum 10K

Comments and questions have been received about Spectrum 10K, from those who gave them when the study was paused, and from those who took part as co-designers of the consultation. These are summarised below.

Spectrum 10K has responded to those comments and questions in a document called Spectrum 10K Themes and Responses to Questions. This is available in full here. It is a long document with 13 themes and 66 answers to questions. We were asked by the co-designers of the consultation to break long documents up into shorter documents to make them easier to read. Because the full themes and questions is a long document we have broken it into shorter documents under each of the heading documents below.

Don’t forget if you want to see everything that Spectrum 10K has said for all the themes and questions go to the full document here.

Ethics approval

The Spectrum 10K study was approved by a Research Ethics Committee in England (London Queens Square REC), and a second committee in Scotland (Scotland A-REC). Both ethics committees specialise in reviewing research involving vulnerable groups, such as adults who lack capacity to consent on their own.

In addition, approval from the Health Research Authority (HRA) was also obtained. As standard procedure, the HRA is reviewing the concerns raised with them about the study. Spectrum 10K is in communication with the HRA and the two RECs to provide further information as we progress through the consultation, but the HRA and ethics committees recognise that the original ethical approval still stands.

Funding

People have asked about how Spectrum 10K is funded. They have also asked if any:

Funding is coming from outside the UK, such as the United States
Businesses are involved in funding the study
Of the Spectrum 10K researcher team will benefit financially
Of the Autism Research Centre’s projects have been funded by Cure Autism Now.

What Spectrum 10K has said in response to these comments and questions about funding is here.

Research team

It is not clear to people who is working on the study and in what the involvement of those working on the study involves.

What Spectrum 10K has said about which researchers are working on the study is here.

Autistic involvement in the design of the study

People have said they are worried about the lack of involvement of autistic people in the process of creating this research study.

They want more thought to go into how a diverse range of autistic people can be more involved in research development in the future.

They have asked how the study will involve autistic people as the research takes place.

What Spectrum 10K has said about autistic involvement in the design of the study is here.

Inconsistency about the aims

When the study was initially launched, and during Phase 2: the co-design of the consultation, people expressed concern that its aims are unclear.

Concern has been expressed about whether the public communications of the study’s aims accurately reflects the objectives written in the original funding application.

What Spectrum 10K has said about the study aims is here.

Potential benefits to autistic people

There have been questions about whether the study will benefit the lives of autistic people. People are not clear about the way in which autistic people’s quality of life is understood in the study, or how the study will lead to improvements in wellbeing for autistic people.

What Spectrum 10K has said about potential benefits to autistic people is here.

Aim to look for genetic subgroups

A summary of the Spectrum 10K study aims was published on its funder’s website here. This stated that one of its aims was to ‘investigate if there are genetically-defined subgroups of people with autism.’ People have expressed concern that subgroups (formed of a smaller number of autistic people who share similar characteristics) are harmful to, and discriminate against, autistic people.

What Spectrum 10K has said about the aim to look for genetic subgroups is here.

Development of a prenatal test

People have expressed concern that Spectrum 10K might increase the likelihood of prenatal screening for autism being developed in the future, for instance by contributing research towards a genetic tests for autism. There are fears that Spectrum 10K’s findings may help to pave the way for a test to be developed, even it is not one of the study’s aims.

What Spectrum 10K has said about the development of a prenatal test, cures and treatments for autism is here.

Past work and statements of the Spectrum 10K researchers

People have asked for more information about whether the previous writings/ comments made by researchers contradict the stated Spectrum 10K values and aims.

They have asked if Autism Speaks is involved in the study and what Prof. Daniel Geschwind’s role in Cure Autism Now (which later became Autism Speaks) was.

What Spectrum 10K has said about past work and statements of the Spectrum 10K researchers is here.

Data Access Committee and safeguarding against future eugenics

People were concerned that the data access committee has not been formed. It is not clear who will be on it and whether any autistic people will be part of it.

Autistic people have said they are worried that data collecting during the study could be used in the future to cause harm.

What Spectrum 10K has said about the Data Access Committee and safeguarding against future eugenics is here.

Data security and privacy

People have asked:

How Spectrum 10K data will be stored?
How secure will data storage be?
How participant information and DNA samples will be kept confidential and anonymous?
What will happen to Spectrum 10K data and samples after the project is finished?
What data will be shared, why and how?
Will participants have access to their own data?
Will Spectrum 10K sell data?

What Spectrum 10K has said about data security and privacy is here.

Withdrawal from the study

People have said that the processes for withdrawing from the Spectrum 10K study have not been communicated clearly or consistently.

What Spectrum 10K has said about withdrawing from the study is here.

Questionnaires and medical records

People have asked why Spectrum 10K needs to use questionnaires and if they are compulsory.

They have also asked why the study is asking for access to medical records and if it is compulsory to share them.

People ask how Spectrum 10K will deal with any possible inaccuracies in them.

What Spectrum 10K has said about questionnaires and medical records is here.

Children

People have expressed concern about involving children in the Spectrum 10K study due to particular sensitivities around the collection and analysis of DNA.

People have asked whether it is legitimate for parents or guardians to consent to taking part in the study on behalf of a child.

What Spectrum 10K has said about the inclusion of children in the study is here.

Adults without capacity to consent

People have expressed concern about involving adults without capacity to consent in the Spectrum 10K study due to particular sensitivities around the collection and analysis of DNA.

People have asked whether it is legitimate for a friend, a relative, or a paid/ unpaid carer to provide consent to participate in the study on behalf of someone who has been deemed unable to weigh up its possible consequences.

Spectrum 10K has said:

We are currently in discussions with the Health Research Authority (HRA) to explore this aspect of the study and will be updating consultation participants once we know more.