Citizen Science and ethical review

Under what circumstances should Citizen Science projects undergo ethical review, and why?

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I guess I would say that any project should undergo an ethical review if it’s possible in any way that some harm might come to the participants through their participation in the study.
Also I guess if the participants have been deceived in any way about the true nature of the study, then that would also be grounds for an ethical review. I had no idea that these citizen science games were considered to be experimental studies. If they indeed are considered to be experimental studies in the same way that other studies are that I carried out by universities, then participating in such studies should also be of some benefit to the participants. At the University of Georgia, it is a requirement that the experimenter be able to list some benefit to the participants through participating in the study.

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I don’t have an answer to this question but this is a question I am particularly interested in. I am a researcher within a University setting and would therefore always go through an ethics review process if setting up a citizen science project to collect/analyse data for research purposes (although the degree to which the ethics review process is fit for purpose for cit sci studies is another matter…). However, much of the work I am doing is working with policy and practice stakeholders (e.g. local councils, health promotion organisations) to support them in building capacity to use citizen science approaches and to develop their own projects. This is where this issue gets interesting/tricky as for me it is not clear where the ‘lines’ are between research and practice … so if a local council wants to use citizen science approach as a means to engage the public in decision making, or to collect data (e.g. to evaluate a local intervention) then does this require ethical review? And by whom?
Hoping to have some fruitful discussion around these issues and would be keen to hear the thoughts of others working in similar spaces!

Hello dear All,
My name is Eva from Germany.
In former Times I worked as a study nurse. Meaning I helped a doctor to test New medicines in patients.
Yes, there where a lot of regularities.
But, Citizen science didn’t seem to need any regularities to me before I came upon this topic.

I thought there will of course be a law to data protection (DGSVO - Datenschutzgrundverordnung roughly “data protection law”) and done with it.

At least with Apps like butterflycount (counting butterflies) and lossofthenight - counting Stars to make a connection how much Light pollution there is.
As I didn’t think there could be any harm to me.
Well, maybe I am a little light hearted or so.

Well, going around and counting Things Isn’t comparabel to testing New medicines - where one could become sick or getting a headache or worst.

So, I am really interested what we will hear in the Meeting. And I do look forward to learning more to this topic and where ethic standarts are needed.

Best, Eva

While this diverges slightly from the topic, I think it’s also important to consider the amount of engagement the community of contributors has in governance and generally determining what is considered ethical in how the project is run. “Citizen Science and Gamification” (Kreitmair and Magnus 2019, https://doi.org/10.1002/hast.992) is definitely worth a read. In particular note that the area of citizen science games is highly unregulated and without norms due to participants not falling cleanly into any existing area. It’s important that participants not continue to remain in limbo, as it were.

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Hi @MikeLandau - Most online activities that fall under the rubric of “Citizen Science” (including Stall Catchers) are not experimental studies. They are validated crowdsourcing platforms for analyzing scientific data. Sometimes people run studies in parallel with citizen science to better understand how people respond to various analytical tasks or online environments - in such cases, we are indeed studying human behavior and I think we should say so. An example of this is the recent human/AI partnership experiment we ran in a sandbox version of Stall Catchers. In that case, we sought ethical oversight and provided full disclosure to participants in the study being very clear that it was an experiment. Does that help clarify?

That said, there have been online games, such as Sea Hero Quest, which has been referred to as citizen science, but was actually an online experiment gathering data about its participants. They were clear about their goals, but I think as a community, to avoid confusion and improve transparency, we should think carefully about when and how we apply the term “Citizen Science”. If I participate in a citizen science project, I believe I am not being studied, but I am helping to do the studying. I wonder what other people think?

Best, Pietro

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Hi @samrowbotham and welcome to the forum!

I think this is an interest topic that you raised, and I wonder if one dimension of relevance here is to consider whether the participatory methods you are describing are being used to study the participants or to enable an analytic process.

I wonder if another dimension of interest would be to consider who the beneficiaries of the process would be. If it’s about engaging the public in decision-making and elevating the voices of people who would otherwise not be heard, that seems to be favorable to those participants.

I’d love to hear other opinions on this, though.

Best, Pietro

Dear Eva,

Thank you for joining the conversation here! I think you are raising the point of “where’s the harm in participating in Citizen Science?” and contrasting this with your prior experience as a nurse, where the ethical stakes may have seemed very high. And I think that’s exactly what we are trying to determine here, as a community - what are the “stakes” in citizen science with regard to the well-being of participants?

Best wishes, Pietro

Hi Pietro,
This is exactly what I’d think. “if I participate in a Citizen science study, I believe I am not bring Studie but I am helping to do the study.”

As I am New to the topic could you please explain to me “Stall Catcher”?

Thanks.

Best, Eva Weiß

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Hi Pietro,
Yes. When I started about in November 2019 with my participation in Loss of night I didn’t think at all about ethics or regularities.
I 'm not shure If there where any abstract of ethics in it.
Just “the ususal” data protection and how to take the measurements ".

Loss of night could become a good example for Our discussion, as Chris Kyba the scientist of loss of night is here too, and me a Citizen scientist - stress on citizen. Meaning 2 ways to look at ethics in cit. Sci.

Well, I should say, I love doing tests with loss of night. And Chris Kyba did help me a lot and told me more. So it wouldn’t be "double blind randomised’ if you’d ask anything.

Back to your question.
Yes, I did not see any way, this app could harm me. It even warns me to test only in a safe surrounding and not to break my leg tripping over.

But as I read the comments in this discussion and some in meetings yesterday, I’d say emphasisd YES there must be a kind of review.

I don’t know what regulations are in my country (except data protection).
So I don’t know if any games in appstore (even like cards games like solitaire are not a test in hiding.)
Yes, I would expect firms like Google /Facebook and so to gain my data for advertising and maybe even more of it what I can’t think about.

I have the feeling that everyone yesterday has more information of the status which regulations are given or not.
I only know about “good clinical practice” and “good laboratory /manufacturing practice” as I learned as a nurse about it.
So, If you could give me a hand? Is there somewhere a summary as an example for eg University’s ethical review with citizens science?

Or is this topic completely new?

(I am really, really sorry, I am hard of hearing and didn’t get much from the information yesterday.

Later on, I will take a look at chat and discussion summary, English in writing is quite good with me, but listening I do have a lot of problems. Sorry)

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Hi @Eva,

Stall Catchers is an online game that lets anyone help analyze Alzheimer’s research data from experiments that have been run using mice - some with and without Alzheimer’s. We call it a game because we have added game elements - like a score and leaderboards, and we sometimes run competitive events. Some “catchers” (Stall Catchers players) really enjoy competing for spots on the leaderboard, and some catchers completely ignore it. In any case, anyone who participates in Stall Catchers is not the subject of an experiment, they are working alongside scientists to help analyze research data.

Recently we ran an experiment in which we created a copy of Stall Catchers and used it to study what happens when there is an artificial assistant (“bot”) making recommendations. In this case, we were studying both the players and the analyzed data to see how to make Stall Catchers better. So in this case it was quite different than the regular Stall Catchers and citizen science projects.

Best,
Pietro

Hi Pietro, thanks for the email to me. I tried to answer to your email. Libuse explained to me that you answered here in the forum. I didn’t look into the forum the last few days. So please excuse me for writing late.

That explains a lot to me.
As I wondered in the discussion why there could be some harm to the citizens scientists as long as they were only to sample data.
Now I do see the point of how participants could become enthralled to it or addicted.

But otherwise, without a kind of fun factor, I don’t think there would be a lot of people who would give their time to a project like stall catcher. (I must confess stall catcher in German translation had no meaning to me).
You know, I like the App Loss of night. I took some measurements of the stars.
My motivation to it is a mixture of my love to star trek since my teens. And the faszinating of our universe and the hope to protect our environment.
The App gives me a chance to feel helpful, useful.

When I am done with the tests I get a number called “Grenzgröße” which is explained to me as how good the test was. But it does not seem to be a competition as I don’t see which numbers other gets. It seems to reflect the brightness of my surroundings and the amount of stars visible.
Chris Kyba did try to explain it to me but I only know, the number should be as low as possible.

In your explanations to the stall catcher it seems to be a motivation to be better than others or a kind of hunt game as fun factor.
I see the point for harming participants now more different.
Eg if a family member would have Alzheimer and I would like to help my relative I might be trying to do as much countings as possible. Like feeling helpless when I can’t do anything for the health of my relative. Or if I am worried about me having this illness.
So maybe I would spent to much time with counting and won’t sleep enough or won’t spent time with my social Buddies or on exercise…
So there could really follow real harm (psychology like being helpless)…

Yeah, there must be some ethical guidelines for the protection of the citizens.
But I can’t emagine how it could be done.

With my doctor and me in medical studies there at first is bevore the study starts the “Ethik Kommission” (a Gremium about experts who will decide if the study will be allowed),
While the study takes place there are regulations and control procedures like auditing. Law like good laboratory practice.
until the end of the study when the medication can be used or not in regular practice. And even after the “Zulassung” approved therapy - it will be controlled somehow.

Well, I’d expect the animal tests has its ethical approval somehow. Like bevor medicine tests there are regulations to animal tests.
So I think for the experiment data from the mice there is a ethic commission. But is it looking over the game? Or is there a law to have an overlook?

As maybe Libuse Veprek told you, I am hard of hearing and didn’t understand the zoom meeting at all. She will give me a talk in German next week. So I hope I understand more of the topic.

But as I am “only” noisy about the topic and not working with the stuff, I hope my opinion can be of help.

Have a good time. Stay healthy.

Update: Libuse and I talked today a while and it was faszinating to get more information and I see my place here in doing a lot of questions. As I am totally new to the topic.

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