Open Citizen Science

to create knowledge with & for communities

Bastian Greshake Tzovaras

bgreshake@proton.me
@gedankenstuecke@scholar.social

About me

• started off in biology
• then moved towards bioinformatics & citizen science
• now interested in how to facilitate community-driven knowledge production (citizen science, free/open source, …)

About me

• Have worn a lot of hats, in different places
• Both academic and in non-profit work

What is citizen science?

Engaging people not professionally engaged in science in producing scientific knowledge

• Type of contributions/tasks can vary
• "Depth" of engagement can vary
• Governance of projects can vary

What is citizen science?

It depends!

Thinking about diversity in CS

Crowdsourcing: openSNP

• started in 2011
• collect personal genetic data donations
• publish as open data (CC0)

Crowdsourcing: openSNP

• collected ~7,500 data sets
• closed in April this year
• removed all data copies we controlled

AutSPACEs

• 90% of autistic people process sensory information differently from non-autistic people
• affects people in public transport, schools, universities, workplaces, …

AutSPACEs

• came out of community priorities
  • Which environments/supports are most appropriate in terms of achieving the best life outcomes in autistic people?
  • How can sensory processing in autism be better understood?

Initial scope & goal

Collect qualitative data to improve our understanding of sensory processing in people’s daily lives

Added goals

• Share people’s stories and adaptive techniques with others who have similar experiences
• Educate neurotypical people to better support their friends, family and colleagues
• Advise organisations on how they can design and adapt spaces to improve people’s lives

New questions

• How to enable more granular control over experiences?
• How to moderate public experiences?

Moderation

“I think you have to work on the basis, unfortunately, that every single corner of the internet which doesn’t have moderation just seems to fill up with Nazis, they’re everywhere, and it happens in the most unlikely places”

- Quote from a community member

Particular moderation issues

• Marginalised groups more at risk of online abuse and to be victims of “false positive” moderation which targets them unfairly
• Autistic people are likely to be at a higher risk of sexual abuse and exploitation online.
• Being ignored or left out of online interactions is associated with greater feelings of worthlessness and negativity
• Autistic people spend more time online than their non-autistic peers

The moderators trilemma

Pick two:

• Having a large & diverse user base
• Have centralised/top-down moderation policies
• Avoid angering large parts of the user base

The moderators trilemma

Pick two:

• Having a large & diverse user base
• Have centralised/top-down moderation policies
• Avoid angering large parts of the user base

⇨ We do not need to use top-down moderation policies, we can co-design them

Moderation questions

1. Should people be able to comment on each others experiences?
2. How to safely enable sharing distressing experiences?

Commenting on other's experiences

• Pro:
  • I think that will encourage good will, because it will encourage people to [give] feedback more.
• Con:
  • “[it’s] my experience, there’s nothing to debate about it”
  • it could cause arguments

Commenting on other's experiences

Decision made: No commenting

• Less pressure on users to seek social approval
• Avoids prejudice and discrimination
• Increases safety to allow sharing of vulnerable/personal experiences

Sharing distressing experiences?

• Pro
  • “people sharing their own story is very powerful"
  • “awareness is really important – understanding”
• Con
  • "we have a duty of care"
  • “...there may be people who are writing about abuse, or are writing about suicide attempts. Those are then triggers for others"

Sharing distressing experiences

• pre-publication review
• labeling of experiences

Sharing distressing experiences

• Pre-publication review lowers risk for users, gives moderators time to contemplate
• Content labels allow sharing of negative experiences, while minimising risk to readers
  • co-developed moderation guidelines to help with user fit & transparency

Thanks!

Thanks for your attention!

You can read more about this moderation work in our paper: doi:10.1017/dap.2024.21

• contact me using any of the methods at https://tzovar.as
• find these slides at https://gedankenstuecke.codeberg.page/talks/2025-05-19-CATlab/