Spectrum 10K - investigate genetic and environmental factors - UK

[Alexej]

For your info - Just came across this one.

Spectrum 10K aims to investigate genetic and environmental factors that contribute to the wellbeing of autistic individuals and their families. We hope 10,000 autistic people and, where possible, their families will take part.

Autistic people of all ages, genders, ethnicities and intellectual abilities can take part.
Participants must live in the UK and have a formal diagnosis of autism.
Registered autistic participants can invite their biological relatives (autistic or non-autistic) to participate, where possible.


Spectrum 10K – The largest study of autism in the UK

Spectrum 10K

 

[Alexej]

I have spoken today with some people about this study and there have been concerns raised about what the information collected in the study could be used for.

While it is recognised that some significant people have endorsed the study, a number of those in the Autistic community are disquieted by aspects of this work.

At this point in time I am not signing up

 

[Mr Alligator]

Not one I’ll sign up for.

there’s a lot of concerned people talking about this on Twitter

 

[Alexej]

Update taken from the website Statement – 10th September – Spectrum 10K

An apology and an update
I am writing on behalf of the Spectrum 10K research team, including the co-lead researchers, to provide a further update regarding the study. From the feedback we have received from autistic people, their families, and charities we can see that we need much wider consultation, that we were not clear enough about the aims of the study, and that aspects of our study need further discussion. We apologise unreservedly for these issues and for any distress that they have caused.