Chat transcript from Community Discussion - Part 1 of 2

09:04:31 From Caroline Nickerson (again) : introduce yourself in the chat! please select all panelists and attendees
09:05:08 From Lisa Rasmussen : Hi everyone! Lisa Rasmussen here from University of North Carolina, Charlotte. I work in the area of research ethics and bioethics.
09:05:08 From Craig Hood : Craig from Loyola Univ. New Orleans … The Big Easy.
09:05:27 From Jessie Oliver : Hi team! Jessie Oliver the night owl from Brisbane Australia :slight_smile:
09:05:41 From Liz Dowthwaite : Hi all from Liz in Oxfordshire!
09:05:47 From Katja Mayer : Hi, Katja from ZSI Center of Social Innovation and University of Vienna, Austria
09:05:53 From Eva Weiß to All panelists : Hi everyone, I’m Eva. Greetings from Germany
09:05:53 From Aris Erik Stengler : Erik Stengler from Cooperstown Graduate Program of Museum Studies, where I teach a course on Citizen Science
09:05:56 From Janice Ansine : Hi I’m Janice Ansine, Senior Project Manager for Citizen Science at The Open University, UK
09:05:58 From Per Sandin : Hello, Per Sandin from Uppsala, Sweden - just started a research project on research ethics for citizen science
09:05:59 From anett richter to All panelists : Hi all, Anett here from Leipzig, Germany.
09:06:08 From Cat Davis Stylinski to All panelists : Cat Davis Stylinski from U of Maryland (US)
09:06:10 From Martha Caswell : Good morning, Martha from the Agroecology & Livelihoods Collaborative at the University of Vermont
09:06:20 From Ginger Tsueng : Hi y’all, Ginger from Mark2Cure
09:06:36 From Lea Shanley to All panelists : Good morning, Lea Shanley from Nelson Institute at the University of Wisconsin-Madison
09:06:40 From Jonathan Romano : I’m Jonathan Romano. I’m a CS undergrad at the University at Buffalo in New York, as well as the current lead developer of the Eterna citizen science game at Stanford
09:06:43 From Patrik Baard : Hi, Patrik Baard from Stockholm (working at Malmö university), on research ethics and CS, amongst other things
09:06:43 From François Bry to All panelists : Hi! I am François from Computer Science of the university of Munich, Germany.
09:06:53 From Michael Capraro : Mike Capraro, Riverview, Michigan.
09:06:55 From Mariana Varese : Hi! here Mariana from WCS, CC Amazonia & RICAP … based out of Lima, Peru
09:06:58 From Lindsay Wancour : Good morning from Bozeman, MT! Lindsay with Adventure Scientists. We’ve been having a lot of conversations about ethics of developing partner relationships - how do we decide which scientists/research projects we want to bring citizen scientists into
09:07:03 From Alexis Garretson to All panelists : Hi I’m Alexis Garretson, PhD student at Tufts University and active iNaturalist researcher and participant @GarretsonAlexis
09:07:08 From Christopher Kyba to All panelists : Hello everyone, I’m Christopher Kyba from the German Research Centre for Geosciences in Potsdam, Germany
09:07:11 From James Sprinks : Hello all, from Oxfordshire! Senior CitSci researcher at Earthwatch (Environmental NGO)
09:07:37 From Patricia De La Fuente : HI all, I am Patricia from University of Burgos, Spain, working in a citizen science project
09:07:58 From Janneke Elberse to All panelists : hi, I’m Janneke Elberse from Utrecht, the Netherlands. involved in different cs projects
09:08:00 From VERONICA DEL BIANCO to All panelists : Veronica Del Bianco, remote postdoc at University of Maryland Center for Environmental Science located in New Orleans, Louisiana, USA
09:08:06 From Anita Shervington to All panelists : Hi everyone! Anita Shervington, BLAST Fest UK!
09:08:11 From Jef Van Laer : Hi everyone! Jef, from Leuven in Belgium. Working for Scivil, an young organisation facilitating CS in our region.
09:08:40 From Liz Dowthwaite : Oh I forgot to say what I do! I’m a research fellow at the University of Nottingham, psychology and human factors in online systems and autonomous systems. Cit Sci fan girl and occasional Zooniverse collaborator
09:08:48 From VERONICA DEL BIANCO : Hi. Veronica Del Bianco, remote postdoc at University of Maryland Center for Environmental Science located in New Orleans, Louisiana, USA
09:09:10 From Barbara Heinisch : Hello, I am Barbara Heinisch from the Centre for Translation Studies, University of Vienna, Austria.
09:09:41 From Christopher Kyba to All panelists : Out of curiosity, does someone have a good example of an obviously unethical citizen science experiment that was conducted?
09:10:29 From Cat Davis Stylinski : Good morning from U of MD (Cat Davis Stylinski)
09:10:49 From Caroline Nickerson (again) to Christopher Kyba, All Panelists : Chris, that’s a great question! will you pose it to all attendees in the chat?
09:11:01 From Marta Oliveira to All panelists : Hello from Lisbon, Portugal! I’m not working/ affiliated at the moment. But I’m a member of ECSA Empowerment Working group :slight_smile:
09:11:22 From Christopher Kyba : Hi all, out of curiosity, does someone have a good example of an obviously unethical citizen science experiment that was conducted? (Christopher Kyba, GFZ Germany)
09:11:24 From Laure Kloetzer to All panelists : Hi, I am Laure Kloetzer, assistant prof in psychology at the University of Neuchâtel, educational researcher on CS and member of an ethics committee:)
09:11:35 From Alexandra Czegledi to All panelists : Hi everyone, I am Alex, junior fellow researcher at Environmental Social Science Research Group (ESSRG) based in Budapest. I am developing Citizen Science online course from a critical theory standpoint.
09:12:07 From James Sprinks : That’s quite a loaded question Christopher! :slight_smile:
09:12:39 From Lea Shanley : In the UW Citizen Science Association Law & Policy Working Group, we are working on issues of data ownership/IP, privacy/data privacy, etc. https://www.citizenscience.org/get-involved/working-groups/law-policy/ You can reach the co-chairs (myself and George Wyeth) at law_policy_cochair@citizenscience.org
09:13:00 From Christopher Kyba : Wasn’t meant to be loaded. There are plenty of disastrous historical examples that led to IRB for other fields.
09:13:22 From Lea Shanley : Oops, meant to say the U.S. Citizen Science Association Law & Policy working group
09:14:11 From Lisa Rasmussen : I answered “yes” to independent review, which I don’t think = IRB review. I think the model Pat just presented can incorporate independent party analysis.
09:14:15 From Ronald Lorenzo : Ronald Lorenzo from Prairie View A&M University, Texas (near Houston). I am a sociology professor and a citizen scientist on Eterna, the RNA research video game with a purpose
09:14:25 From Nadja Kerschhofer-Puhalo to All panelists : Hello from Vienna, Nadja Kerschhofer-Puhalo, working on children’s literacy repertoires and multilingualism
09:14:34 From James Sprinks : @Chrisopher there are certainly examples in the health field that have got close to the line, using participant data for commercial gain, but perhaps not making the t&c’s particularly clear - Wiggins et al. have a good paper describing some of this…
09:14:37 From Liz Dowthwaite : @Christopher, I don’t know about disasterous, but I think there are plenty that could be called unethical for wasting volunteer time, or misuse of data
09:15:15 From Liz Dowthwaite : Or even, just not making good use of the data could arguably be unethical
09:15:54 From Muki Haklay to All panelists : Hi Chris: it’s easy to come with a possible example - being funded by a lobbying group to carry out community led project on air quality and noise around a development project, to create a “genuine” campaign against the development.
09:15:58 From Cat Davis Stylinski : @Liz, I agree with your point about poor use or tossing of data
09:16:02 From Laure Kloetzer to All panelists : « Bad science is bad ethics » repeats our President in the ethical committee
09:16:07 From VERONICA DEL BIANCO : I think privacy is an issue with all the geotagging
09:16:22 From VERONICA DEL BIANCO : especially with the involvement of minors
09:16:59 From Craig Hood : @Veronica … I agree, I think the privacy piece compels oversight or review
09:17:20 From Christopher Kyba : That’s totally reasonable Caren, and I agree with you. I was just curious if there was an example of something that went badly wrong.
09:17:51 From Liz Dowthwaite : @Veronica, huge yes on privacy, especially in involvement of minors
09:18:23 From Liz Dowthwaite : Love that data equation slide
09:18:23 From Lea Shanley : @James, What are the issues around commercial use of the data? In Patients Like Me there is mutual benefit
09:18:35 From Muki Haklay to All panelists : @Chris The lithium study of the ASL patients on PatientsLikeMe is another example - you can think of another substance that can go horribly wrong
09:19:11 From Liz Dowthwaite : @Lea, for me it’s about the transparency of this, this is the user’s data and it’s being sold for profit. How aware is the volunteer of this?
09:19:21 From James Sprinks : Well, I am not an expert in the area - but the Wiggins paper suggests that in some projects, it was not made clear to the participants how the data was to be used.
09:19:48 From James Sprinks : So they were unaware they were contributing for commercial gain.
09:20:23 From Jonathan Romano : I think it’s also worth bringing up the value of the work done by citizen scientists, particularly when possibly done for commercial gain. This is something we’re grappling with at Eterna. Included in that is considering that there is an impact on participant diversity, where some individuals are in different personal/financial situations (and so access is different, as is what may be considered ethical)
09:20:42 From Caroline Nickerson (again) : citizenscience.org/data-ethics-study
09:20:57 From Sherman Farhad to All panelists : Hi all; Sherman from University of Cordoba, Spain
09:23:12 From Jessie Oliver : Most discussions in citizen science on ethics is around citizen scientists, but I am curious if other forms of ethics are involved in the study, like such as ethics around intersections of citsci and AI/computing or animals?
09:23:42 From Jonathan Romano : That seems very dependant on the project, but potentially likely
09:23:45 From Liz Dowthwaite : @Jessie, great point
09:24:01 From Laure Kloetzer to All panelists : @Jessie We had this discussion with AI and ethics yesterday in our symposium.Should be available online…
09:24:11 From Liz Dowthwaite : Especially interested in AI/cit sci relationship
09:24:43 From Craig Hood : @Stephen, People studying wild organisms worked with their IACUCs to develop appropriate standards to evaluate studies.
09:25:03 From Lea Shanley : Caren Cooper and others wrote a nice paper that aligns with Stephen Rosenfeld’s comments: Cooper C, Shanley L, Scassa T, Vayena E. Project Categories to Guide Institutional Oversight of Responsible Conduct of Scientists Leading Citizen Science in the United States. Citizen Science: Theory and Practice. 2019;4(1):7.

DOI: http://doi.org/10.5334/cstp.202
09:25:30 From Caren Cooper to All panelists : in PatientsLikeMe, I think participants opt (consent) whether or not to have their data used by phrama and whether they want to sign up for clinical trial for drug development.
09:25:46 From Craig Hood : Professional wildlife Societies worked up approp. alignment to IACUCs… so same sort of thing for CS and IRBs could help.
09:26:01 From Christopher Kyba : I think this is a hugely important point Stephen
09:26:05 From Lea Shanley : It’s in a special issue Caren Cooper co-edited of the Citizen Science Theory and Practice Journal https://theoryandpractice.citizenscienceassociation.org/collections/special/ethical-issues-in-citizen-science/
09:26:08 From Liz Dowthwaite : Great point about gamification
09:26:09 From Jessie Oliver : Well, I work with both AI and endangered species, and it concerns me that citizen scientists may not realize the danger in adding observations of threatened species to open platforms
09:26:18 From Jessie Oliver : as this could very much impact wildlife
09:26:21 From Jessie Oliver : for example
09:26:29 From Craig Hood : @Jessie, YES.
09:26:31 From Lea Shanley : @Jessie, Agree, we shouldn’t necessarily make data always open
09:26:51 From Jessie Oliver : Right, but most people don’t think about it
09:26:57 From Muki Haklay to All panelists : @Jessie - great point
09:27:02 From Liz Dowthwaite : @Jessie, yes! I was just reading a book that had sightings of endangered eagles being used by egg stealers.
09:27:07 From Lea Shanley : There are many instances where it’s good to protect the data, liken endangered species data, indigenous communities and their lands, archaeological sites, etc
09:27:08 From Caren Cooper to All panelists : In my Sparrow Study, IACUC didn’t allow a certain portion of the study that involved collecting data from volunteers who kill sparrows (which is something people do, not something we were going to tell them to do). IACUC allowed studies of eggs because they don’t consider eggs to be vertebrates.
09:27:45 From Laure Kloetzer to All panelists : Because there is an ideology of ethics (should be about anonymity, open data, etc) but ethics is mostly first about asking the right questions.
09:27:48 From Lea Shanley : There’s a global movement around Indigenous Data Sovereignty
09:27:57 From Lisa Rasmussen : Just to push the independent review point a bit: there are areas of expertise each of us lacks, so we might unintentionally miss critical ethical issues by assuming we have all the ethical perspective we need if we just mean well. I guess I’m urging humility in approaching ethics in CS.
09:28:02 From Jessie Oliver : It happens in Australia with reptile and parrot trade too
09:28:11 From Caroline Nickerson (again) : hi all! make sure you select “all panelists and attendees” if you want everyone to see your chat
09:28:16 From Craig Hood : IRBs address humans, and IACUCs address vertebrate (mostly mammals) subjects.
09:28:19 From Liz Dowthwaite : @Lisa, 100% agree
09:28:48 From Laure Kloetzer : Because there is an ideology of ethics (should be about anonymity, open data, etc) but ethics is mostly first about asking the right questions.
09:29:03 From Eva Weiß to All panelists : Would love to participate in Diskussion. But I cant Chat and Listen to Meeting.
09:29:05 From Lea Shanley : IRBs are not the same for all organizations. In the federal government there are many stories by government employees trying to launch citizen science projects that the process could take year or more, effectively killing innovative new projects.
09:29:05 From Jessie Oliver : @Craig, yes, but do people in our citsci community know about those distinctions? I don’t hear the latter discussed much, and what about AI?
09:29:20 From Cat Davis Stylinski : @Lisa: I also agree we need external review
09:29:23 From Eva Weiß to All panelists : Maybe we can continue Chat lauter in Plattform?
09:29:26 From Lea Shanley : Fed employees say the IRB process for them is “horrible”
09:29:37 From Caren Cooper to Christopher Kyba, All Panelists : I’m hesitant to call out specific examples of unethical behavior… some would say Eyewire is an addictive game for kids and they know it but continue; some on Zooniverse have complained about making discoveries but not being included in papers, but Zooniverse changed their practices for that. And many critics of Mark Edwards (my collaborator) for his work in Flint, MI and perceptions of taking power away from communities.
09:29:44 From anett richter to All panelists : Just adding here some reference to RRI and ethics: https://www.rri-tools.eu/de/how-to-pa-ethics (maybe useful for some)
09:29:52 From Liz Dowthwaite : I don’t necessarily enjoy going through ethical review but it’s definitely 100% necessary
09:30:09 From Christopher Kyba : Thanks Caren
09:30:12 From Caroline Nickerson (again) : hi all! make sure you select “all panelists and attendees” if you want everyone to see your chat
09:30:42 From Gaston Remmers to All panelists : Hi all, this is Gaston Remmers from The Netherlands. We’ve gained a lot of experience with confronting the current medical oversight bodies with a large patient-co-led project called my MyOwnResearch. And guess what? The project had to be aborted because of the inadequate ethical norms embedded in the institutional bodies, that ultimately were used to express disapproval of the methodology we designed. It had to be either an observational or an intervention (read RCT) study.
09:30:51 From Jessie Oliver : I am not familiar with “IRB” but I do have to get ethical approval through my university
09:31:00 From Jessie Oliver : to interview and work withpeople
09:31:03 From Liz Dowthwaite : @Jessie I think a lot of the AI ethics is still about the effect on and treatment of the volunteers, but there’s much more to it
09:31:05 From Laure Kloetzer : IRB is very US:)
09:31:07 From Aris Erik Stengler : Hi, will the recording be available? Really worth revisiting
09:31:24 From Caren Cooper : Julia Brody at the Silent Spring Institute has some great papers about “working collaboratively” with an IRB (i.e., educating their IRB about participatory research)
09:31:30 From Libuše Veprek to All panelists : Yes, we will share the recording with all participants.
09:31:48 From Lisa Rasmussen : @Jesse, “REC” (Research Ethics Committee) is another term - not sure if that’s used down under?
09:31:58 From Caroline Nickerson (again) : we will share the recording
09:32:02 From Jonathan Romano : Great!!
09:32:09 From Aris Erik Stengler : Thanks!
09:32:15 From Martha Caswell : CUNY Critical PAR team has great examples of community IRB processes
09:32:20 From Lea Shanley : Muki Haklay indicated in the UK they don’t have IRBs
09:32:33 From Anje te Velde : Anje te Velde, AmsterdamUMC. Experience that is is very difficult to validate what patients are doing as self investigation.
09:32:34 From Muki Haklay to All panelists : @lisa at UCL we have REC but it is not adverserial
09:32:37 From Lea Shanley : @Martha, could you send the link to the CUNY examples?
09:32:56 From Jessie Oliver : I am a strong advocate for ground up projects, but I think those groups that don’t go through the academic circles may not even know of these resources at all, and it might be worth associations creating overview “fact sheets” for different resources in different topics that people can look at?
09:33:06 From Liz Dowthwaite : Every single study that involves humans has to through ethics review in my department - we tend to call them Ethics Review Boards or Research Ethics Committees
09:33:08 From James Sprinks : In the UK, you go through your university ethics board, if not you have to abide by national or EU directives (GDPR for instance).
09:33:31 From Lea Shanley : @James, could you share a link to the Wiggins paper you’re referencing? Thanks much!
09:33:56 From James Sprinks : This is slightly different with medical, if your participants/citizen scientists can be identified as ‘patients’
09:33:58 From Lisa Rasmussen : Great paper about community IRBs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4795445/