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Autistica/Turing citizen science project: Values

Kirstie Whitaker & Georgia Aitkenhead

This document outlines the values for the project.

Impact

We will strive towards increasing knowledge and providing solutions which will help to create longer, healthier, and happier lives for autistic people and their families. We will aspire to maximise the impact that we have on the lives of autistic people, both immediately and in the long term. We will ensure that our solutions are sustainable, appropriately resourced, and underpinned by outstanding science. We will pursue opportunities and innovations which will allow us to maximise impact.

Participatory Science

Community involvement will be integral to the conception and evolution of the project as well as the iterative design of the platform we create. We will involve members of the autistic community as co-collaborators and strive to diminish distance between researcher and researched. We will partner with members of the autistic community in designing the content, form, direction, and methodologies of the project throughout. We will continuously collect feedback on the project and implement changes to our policies to ensure we follow the standards of best practice as they adapt and evolve.

Transparency

We will be transparent about the aims of the project, its priorities, and its ongoing progress. We will be upfront with all participants about our intentions for the project when they are first involved and will also keep participants continually updated as the project progresses, as long as they agree to be contacted again for this purpose. We will also publicly publish updates and results on an ongoing basis.

Protection and Consent

We will rigorously uphold high standards of data protection. We will ensure that consent is always actively sought when we are requesting input from participants, and that we remind them of their right to withdraw from future participation at any point. We will develop, create, and maintain fine-grained consent models which will allow participants to have control over how their data is used and how it is shared. Unless the participant has provided explicit permission, all sensitive information and identities will be kept secure.

Open Source

All source code that we generate during the project will be made available under a free and open source license, and will be available to be used, changed, or shared by anyone free of charge. We believe that open source working will encourage more rapid innovation, collaboration, and community support.

Diversity and Inclusion

We are dedicated to diversity and inclusion. We will endeavour both to remove barriers to inclusion wherever we encounter them, whether they be direct or indirect, and to proactively support the inclusion of diverse groups. This includes creating and maintaining an environment which is supportive of difference. We will neither discriminate nor tolerate any discrimination on the basis of race, gender identification, neurodiversity, or sexual orientation. We are committed to equity for all.

Respectful Conduct

We will treat each other with mutual respect and acceptance. We will strive to be empathic towards one another and will not undermine each other or belittle opinions which differ from our own. We will not tolerate any forms of bullying or harassment. We will ensure people have the means to raise any problems or concerns they may have and will make sure they are not either directly or indirectly prevented from reporting bullying or harassment. Any member of the community – including citizen scientists, developers, researchers, and members of Autistica or the Alan Turing Institute – will be asked to end their participation in the project if they persist in bullying or harassing behaviour. We will conduct ourselves with care for others and professionalism.