Chat transcript from Community Discussion - Part 2 of 2

09:34:50 From Jonathan Romano : You could argue that this situation is just “normal” UX design
09:35:04 From Jonathan Romano : WRT a sandbox
09:35:16 From Jonathan Romano : Basically A/B testing
09:35:33 From Jonathan Romano : (Or other forms of user testing)
09:35:40 From Cat Davis Stylinski : @Lisa - thanks for the paper
09:35:43 From Lisa Rasmussen : And the SAN people in a few Southern African countries came up with their own code of ethics that’s worth a read to see their different areas of emphasis compared to traditional research ethics: https://www.globalcodeofconduct.org/wp-content/uploads/2018/04/San-Code-of-RESEARCH-Ethics-Booklet_English.pdf
09:36:07 From James Sprinks : Wiggins paper: https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1619859
09:36:30 From Jessie Oliver : @Jonathan, Well, I am a design researcher, and it’s something I think about, but it’s certainly not the norm for others I work with
09:36:47 From Lea Shanley : Thanks @James!
09:36:57 From Christopher Kyba : If you wnat to see a citizen science project that the medical community thinks is ethically fraught, check out TeQfor1 https://www.itas.kit.edu/english/projects_woll19_teqfor1.php
09:37:21 From Jonathan Romano : @Jessie Which is somewhat my point… it’s generally not strictly regulated, for better or worse
09:37:49 From Lea Shanley : @Lisa, the SAN paper is also referencing https://www.gida-global.org/care. I’m organizing a panel on Indigenous Data Sovereignty for the Academic Data Science Alliance in October. Will send link when available. The IEEE has a working group to develop metadata standards and practices for indigenous data under the CARE principles.
09:38:17 From Christopher Kyba : In TeQfor1, people with type 1 diabetes are using DIY artificial pancreases.
09:38:37 From Lea Shanley : @James, Ah, yes, John Willbanks (Wiggin’s coauthor) and SageBio has been leading work on ethical best practices for crowdsourced health information.
09:38:45 From Jessie Oliver : @Jonathan, fair enough :slight_smile:
09:38:47 From Muki Haklay to All panelists : Question for @pietro - great presentation an relevant to contributory or even co-created that are led by a researcher? What about community-led projects where they approach the researcher? Or completely community led outside institutional boundaries ?
09:39:13 From Caroline Nickerson (again) : bit.ly/citsciethics
09:39:53 From Caroline Nickerson (again) : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on
09:40:08 From Liz Dowthwaite : Every single project that involves people in any way should go through ethics review.
09:40:13 From Christopher Kyba : The second example I think is really relevant. Also in co-design, because when would a review happen? You are constantly adjusting the plan.
09:40:19 From Liz Dowthwaite : We might not see ourselves the problems that might arise
09:40:40 From Ronald Lorenzo to All panelists : “common sense is not so common”
09:40:57 From Jonathan Romano : To clarify the exerpt from my reply (the third point) - participants fall through the cracks and aren’t appropriately protected wrt rights or responsibilities acknowledged
09:41:25 From Caroline Nickerson (again) : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat
09:41:33 From Liz Dowthwaite : @Christopher I agree with the second point is vital. We did a lot of research with children (not cit sci) that needed extensive ethics review, but the public engagement events we did we didn’t have to do it.
09:42:10 From Lisa Rasmussen : I think it’s hard for us to distinguish IRBs from human subject ethical issues. In citizen science, things aren’t so neat, so I’d encourage us all to think of ethical oversight in CS as much broader than harm to people.
09:42:24 From Pietro Michelucci to All panelists : is q&a workign
09:42:32 From Lea Shanley : @Lisa, Agree!!
09:42:42 From Liz Dowthwaite : @Lisa, agree, that’s a very interesting point
09:43:15 From Jessie Oliver : @Stephen I think the issues are pretty ubiquitous, just different magnitudes really.
09:43:25 From Caroline Nickerson : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat
09:44:02 From Jessie Oliver : Things happening in the US has certainly brought up injustices in Australia too
09:44:13 From Katja Mayer : We found 2 major problems in our interaction with IRB: 1) in our citizen social science project there are a lot of dimensions that are transgressing the scientific domain - so that is not easy to judge from a scientific ethics standpoint alone 2) participants driven projects are often evolving dynamically in a direction not foreseen, so the ethics as well as the informed consent procedures should also evolve dynamically: IRBs are not at all prepared for that
09:45:16 From Muki Haklay to All panelists : This is a relevant source - ethics in community-based participatory research https://www.dur.ac.uk/socialjustice/ethics_consultation/
09:45:16 From Cat Davis Stylinski : @Katja: I agree with the point that IRBs are not set up for evolving dynamic projects
09:45:16 From Christina Cooper to All panelists : @Christopher Kyba Thank you!
09:45:26 From Lisa Rasmussen : @Katja, yes absolutely. And I’ll add to that that IRBs are explicitly not supposed to include a consideration of harms to communities.
09:45:32 From Muki Haklay : This is a relevant source - ethics in community-based participatory research https://www.dur.ac.uk/socialjustice/ethics_consultation/
09:45:54 From Christopher Kyba to All panelists : TeQfor1 was funded by the CitizenScience@Helmholtz funding grant
09:46:00 From Caren Cooper : IRBs are not prepared for the type of relationship between scientists and citizen scientists, in terms of ongoing communication, shared decision-making, return of results even if their interpretation has lots of uncertainty
09:47:00 From Stephen Rosenfed to All panelists : History in the US taught us that “professional norms” were not sufficient (response to Beecher, etc.). If we consider science as building a “Knowledge Commons”, then we can look to work on sustaining Commons in general (work of Elinor Ostrom) that suggests that there needs to be some oversight and enforcement function.
09:47:02 From Katja Mayer : yes to all, and adding even that IRBs are not prepared to assess responsibilities coming with distributed data ownership
09:47:10 From Jessie Oliver : @Katja, if you feel like it, I would really value hearing an example for context
09:47:16 From Caroline Nickerson : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat
09:47:51 From Liz Dowthwaite : In my Uni, becoming part of the ethics review board is voluntary - and they sometimes struggle to find people who want to do it. I think there’s an argument for a community ethics review within citizen science, but then how do we incorporate that into situations where we’re required to go through a formal system
09:47:52 From Caren Cooper : I didn’t mean to imply that norms alone were enough…but they are a key part, in addition to oversight (but current oversight in US is poor fit for citizen science, IMO)
09:48:02 From Lea Shanley : The Participatory Mapping/PGIS/PPGIS community has also examined ethical issues and instituted codes, guidance, etc. http://www.ppgis.net/the-practice/good-practice/
09:48:12 From Caroline Nickerson : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat
09:48:48 From Lea Shanley : More from PGIS Practical Ethics https://pubs.iied.org/pdfs/G02957.pdf
09:49:00 From Lisa Rasmussen : Here’s a good paper on neoliberalism in citizen science along the lines that James was just asking about: https://theoryandpractice.citizenscienceassociation.org/articles/10.5334/cstp.186/
09:49:06 From VERONICA DEL BIANCO : @Lea thanks for sharing this
09:49:08 From Liz Dowthwaite : Sorry I think that was really two points - how to get people involved in wanting to help with ethics, and how to incorporate into our formal systems
09:49:12 From Caroline Nickerson : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat
09:49:55 From Christopher Kyba to All panelists : We have the problem that we’re not even allowed to spend money on food or drinks when we have a co-design workshop with our citizen scientists
09:50:01 From Liz Dowthwaite : @Pietro, my main research area is motivation to participate, so that’s super interesting, thanks
09:50:05 From Caroline Nickerson : raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. if you just have a thought you’d just like read out, you can put it in the chat. You can also join the conversation in the forum. bit.ly/citsciethics
09:50:06 From Caren Cooper : Yes, There are several projects in which participants pay a fee to take part, also projects where volunteers get paid, and also co-op style where volunteers get share of profits from sale of their ‘big data’
09:50:12 From Lea Shanley : @Veronica, it’s from 2006, but the field of Participatory mapping have been looking at these ethical issues of working with communities for 30+ years
09:50:55 From Caroline Nickerson : Raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. If you just have a thought you’d just like read out, you can put it in the chat. You can also join the conversation in the forum. bit.ly/citsciethics
09:50:58 From Lea Shanley : Another Participatory Mapping ethics guide: https://www.researchgate.net/publication/29737712_Mapping_Communities_Ethics_Values_Practice
09:51:06 From Jessie Oliver : @James GREAT point! And we have tensions around ethics of both where funding for projects come from and if people are paying for experiences and collecting data in the process. Earthaatch Australia takes Coca Cola money to clean up plastics (one of the biggest polluters) and citizen scientists play to go on trips where they also collect data, and many are very against both aspects of this model
09:51:15 From Caren Cooper : Yes, some of the many fields that could be considered under the umbrella of “citizen science” have well-developed ethics… some aspects can be useful to other fields, some not
09:51:38 From Katja Mayer : @Jessie I think the problem is because of the path dependencies of responsibility in co-designed projects: most of the times the funding is going to a research organisation, therefore the conventional ethical procedures …
09:51:48 From Cat Davis Stylinski : I’m interested in Caren’s example of involving citizen scientists in collecting data on humans (not themselves) — how best to address ethic issues in these cases?
09:51:55 From Lea Shanley : It would have been great to have a community member, citizen scientist as part of the panel to offer their perspective directly on the strength and limitations of IRBs
09:52:13 From VERONICA DEL BIANCO : @Lea It makes sense to look at other fields. I worked in extension for years and they have 100+ years experience doing research with the public. extension had its own IRB separate from the university.
09:53:02 From Jessie Oliver : @Lea I agree
09:53:03 From Lea Shanley : @Veronica, What are the key lessons from Extension that the citizen science community could learn from?
09:53:08 From Caren Cooper : @veronica - interesting, I didn’t know that Extension has its own IRB – I’m curious to learn why or how that came about and how it differs
09:53:13 From Katja Mayer : @Jessie and furthermore: having conventional governance and legal regulations attached to the flow of money
09:53:16 From anett richter to All panelists : I sense so many cultural differences in the practice of CS and wonder what would be the outcome of ethical assessments for the same proposal across different countries?
09:53:43 From Lea Shanley : @Veronica, I worked with Extension in Wisconsin when working with tribes and rural communities. They do some great work!
09:53:44 From Liz Dowthwaite : Informed consent is massively important
09:53:44 From Caroline Nickerson : Raise your hand or put a thought in the Q&A if you want us to turn your video and audio on. If you just have a thought you’d just like read out, you can put it in the chat. You can also join the conversation in the forum. bit.ly/citsciethics
09:53:55 From Caren Cooper : @anett – not just across countries, but across different home disciplines — I would expect very different views
09:54:10 From Liz Dowthwaite : but YES, thank you @Pietro
09:54:11 From Lindsay Wancour : @Jessie, does Earthwatch have any formal structures in place to help reduce those ethical challenges and choose funders/scientific partners that are less controversial?
09:54:16 From Lisa Rasmussen : @Pietro, BUT, a clinician has to evaluate competence/capacity to consent, so that’s one difference in citizen science.
09:54:16 From Eva Weiß to All panelists : @Lea - I think I am such a community member participating in Loss of night.
09:54:29 From Lindsay Wancour : Or, does anyone know of any organizations with a framework for making those decisions?
09:54:33 From anett richter to All panelists : @Care: agree that makes so difficult. Thanks for starting this important discussion.
09:54:51 From anett richter to All panelists : @Caren
09:54:55 From Stephen Rosenfed to All panelists : Something disturbing about IRBs: they are simply not accountable to the people they are supposed to protect! I’m not sure that simply having “representation” on the IRB or REC is enough - there needs to be a fundamental connection that makes the ethical review accountable to the community, not just to professional researchers.
09:55:12 From Christopher Kyba to All panelists : :slight_smile: Great to see you Eva!
09:55:32 From James Sprinks to All panelists : @Lindsay, I think we (Earthwatch) would love to be able to be ethical in our sponsor choices, but in the current economic climate jobs are being lost so it is really difficult!
09:55:33 From Jessie Oliver : @Linsday, I have tried to talk to them about it but they have gotten so much pushback, they don’t say much
09:56:10 From Kate Lewthwaite to All panelists : I work for a charity where we have a “risk group” to assess all corporate partners in terms of potential risk to the values of our charity.
09:56:10 From Caren Cooper : Thanks @Jonathan, and some citizen science games are problematic b/c they are addictive and used by children
09:56:32 From Bastian Greshake Tzovaras : To PIetro’s point& quesion: we are running a community-review of new projects on our citizen science platform which requires consensus. We ended up with a project request where the review ended up saying “people can’t consent to this as they can’t estimate the risks involved” (the question was whether people can publicly share their complete google search history. and the community decided it’s unrealistic for anyone to estimate what the risks even could be in that)
09:56:49 From Libuše Veprek : Here’s the link to the paper Jonathan Romano mentioned: Kreitmair and Magnus 2019, https://doi.org/10.1002/hast.992
09:57:03 From Liz Dowthwaite : I’m a psychologist, and I think as was mentioned before, there was a change from calling people ‘subjects’ to 'participant’s to recognise their autonomy. Now I think we have an issue with how to think about different types of ‘participants’ and what that means for ethics.
09:57:12 From Stephen Rosenfed to All panelists : Re unprotected game players, “Ghost Work” by Mary Gray surveys the mechanical turk community to highlight potential exploitation. It’s a continuum from there to citizen science…
09:57:31 From Christina Cooper to All panelists : Too bad we’re almost out of time - the fact that this debate could go on for the rest of the day, just highlights the importance of the conversation : )
09:57:38 From James Sprinks to All panelists : I guess another question is ‘shouldn’t Coca Cola contribute to environmental research, as they are part of the problem?’
09:57:40 From Christopher Kyba to All panelists : Caren - maybe it makes me a bad parent, but if you have an addictive CitSci game that’s better than “Roblox”, I’d love to hear about it… :wink:
09:57:44 From Ginger Tsueng : Thank you all for the insightful panel and ongoing chat discussion
09:57:55 From Caroline Nickerson : Please join the forum! bit.ly/citsciethics
09:58:04 From VERONICA DEL BIANCO : @Lea 1. advisory board of community stakeholders giving input or reviewing processes 2. standard informed consent and assent 3. having members on the internal review board who knows how extension works so it makes sense that having someone who understands citizen science on the board
09:58:23 From Caroline Nickerson : Forum: https://bit.ly/citsciethics
09:58:24 From Cat Davis Stylinski : @Liz - I think labels and terms are key, and we need to shift away from ‘subject"
09:58:40 From Jonathan Romano to All panelists : To be honest, most citsci games are not well designed. I’ve been in meetings with many other developers of other cs games and we all have huge issues with retention
09:58:44 From Caren Cooper : Very few citizen science projects have an explicit consent process
09:58:47 From Craig Hood : Univ. IRBs REQUIRE fullIRB review of any projects that involve children.
09:58:50 From Jonathan Romano : To be honest, most citsci games are not well designed. I’ve been in meetings with many other developers of other cs games and we all have huge issues with retention
09:58:54 From Caren Cooper : let alone parental consent
09:58:59 From Caroline Nickerson : Join the forum: https://bit.ly/citsciethics
09:59:14 From Liz Dowthwaite : @Cat - definitely ‘subject’ is awful
09:59:26 From Lea Shanley : @Veronica, These are great. Perhaps you could write a blog on this and share with the CSA?
09:59:27 From Jonathan Romano : Addiction is somewhat of a limited issue currently just due to poor design lol
09:59:48 From Lisa Rasmussen : Thanks for the great chat!
09:59:51 From Caroline Nickerson : Join the forum: https://bit.ly/citsciethics
10:00:01 From Cat Davis Stylinski : @Lea - great idea for a blog by Veronica
10:00:06 From Anna Rudnicka to All panelists : We did a study that experimentally linked motivational messages to willingness to disclose personal data - ethical implications: we must be careful about what we promise as it influences people’s approach to data privacy and disclosure: https://discovery.ucl.ac.uk/id/eprint/10067550/
10:00:27 From Jessie Oliver : @Jonathan, I TOTALLY agree about the games :stuck_out_tongue:
10:00:28 From Caroline Nickerson : Join the forum: https://bit.ly/citsciethics
10:00:28 From Caren Cooper : Take part in co-creating tools, resources, and norms - https://www.citizenscience.org/data-ethics-study/
10:01:11 From Liz Dowthwaite : This has been incredibly interesting and important, thank you!
10:01:29 From VERONICA DEL BIANCO : @Lea sure, I’d be happy to
10:01:31 From Jessie Oliver : Also, ya should say results until end or bias :stuck_out_tongue:
10:01:38 From Caroline Nickerson : Join the forum: https://bit.ly/citsciethics
10:01:48 From Iren Bischofberger to All panelists : Thanks for your well organized and stimulating presentation and discussion!
10:01:54 From Cat Davis Stylinski : very interesting….thanks!
10:01:55 From L Hays to All panelists : immunity
10:01:56 From Caren Cooper : @jessie - I was thinking same – Caroline influenced the results
10:02:03 From Lea Shanley : @Veronica, it sounds like @Cat Stylinski agreed, so she may be the person to talk to. But if not, you can reach me at lshanley@wisc.edu
10:02:20 From Jessie Oliver : Any results are good results :slight_smile:
10:02:35 From VERONICA DEL BIANCO : Will do
10:02:39 From Mariana Varese : Thank you all, very interesting!
10:02:40 From Marta Oliveira to All panelists : Thank you!