Great question from @pandamakes about the @AutisticaUK @turinginst #ResearchAssociate JOB that you should all be applying for (and telling your friends about). turing.ac.uk/work-turing/re…

I'm going to answer it in a little thread 👇🏼

https://twitter.com/pandamakes/status/1081104612789235712

What do I mean by a "fine-grained consent model"? At the highest level it's pretty simple: it means I want to give all the participants control over their data.

What does that mean in practise?

In this #CitizenScience project we'll be collecting experiences about the challenges that #Autistic people have when navigate the environment.

For example, is it very stressful to take the tube? (Yes!) Are there times that are particularly bad? (Yes!) What are the workarounds?

You can imagine someone uploading an experience that is general enough that they're happy to make totally public. Similar to a tweet! "I'm on the jubilee line and there are far too many people, its making me feel panicky" (for example).

But you could imagine a different example that was outside someone's house where they're happy to upload the story for researchers to use to understand #Autistic people's experiences, but they don't want to it to be public.

One of the goals of the project is to build community between #Autistic people. Ideally they'll feel a little less alone in these challenges, share coping strategies & support each other. A #CitizenScientist might be totally fine with sharing their stories for that purpose.

BUT another goal is to build a database that can be used for research purposes. Maybe we can run the stories through an #NLP (natural language processing) algorithm to cluster them together? Some #CitizenScientist contributors will be ok with that. Others would prefer not.

We'll also maintain the database to be #FAIR under managed access. Maybe other researchers would like to better understand #Autism from the data? Some #Autistic contributors will want to take part in that work, others may not.

SO we need a fine-grained consent model!

Every individual contributor needs to be able to have complete control over their data.

They aren't going to be signing up for some generic T&Cs and losing sight of what's happening!

Regarding @pandamakes question about how much work this is. There are two answers:

1) It will take time. The project is #participatory so it will be designed and built with our #Autistic collaborators. We'll iterate with them on what needs to be built.

2) There are great teams who are already thinking about these sorts of data control models. @OpenHumansOrg in particular have already reached out about working with them to build a first version.

My personal gut feeling is that this will be a lot of thinking and "stakeholder engagement" work....but I'm quite confident that much of the technical components have already been developed! I just don't think they've all been incorporated into a project like this one before!

Super happy to answer any questions, and I do think this is a big chunk of REALLY VALUABLE work. Just think of the impact we can have on #tech if we show that individuals being informed and empowered to manage their own data can be done!