External ethical review takes time and money - why would someone seek this out if they didn’t have to?
In medical research, laws sometimes require IRB approval when federal funding is involved. But what if there are no legal reasons to seek ethical review?
Should journals related to citizen science require such review as an incentive or way to ensure community oversight?
What other incentives are there? What if we created a mechanism to share out ethical review outcomes on social media, for example, as a way to create a groundswell of interest and enthusiasm?
If you were creating a new citizen science project, would you seek ethical review? Would it depend on the time/cost requirements? Are there situations when you wouldn’t even try because you think it would be unnecessary?
Really curious to know what others think about this issue of motivating the use of ethical review…
I think most of the time researchers aren’t all that interested in the ethics of their experiments. Usually, it’s universities who want to do an ethical review to make sure they don’t get sued if one of the participants claims that they’ve been harmed in some way by the experiment. Later, if someone has a problem with the study, the University can always claim that they did everything possible to ensure that no harm came to the participants, and that the participants were given every opportunity to opt out of participation in the study.
I’ve virtually no expertise in this area. I’ve signed up for the public discussion in order to get more exposure to the topic and learn something. I feel eminently unqualified to address these questions. I consider citizen science as a tool for advancing research. While the research methodology itself might warrant ethical review, I’m not sure the enlistment and use of citizen scientists on the project would, unless perhaps the task they were asked to perform were itself dangerous or ethically questionable.
I’d assume most citizen scientists were motivated by altruism, a desire to learn, and perhaps an opportunity to interact with like-minded colleagues rather than any desire for recognition or remuneration. It would, of course, behoove the research team to motivate their volunteers by providing appropriate feedback and generally showing appreciation for their collaboration. That’s not ethics so much as common sense - if the team fails to provide such feedback, their volunteers will lose interest and simply go elsewhere. I expect these comments are overly simplistic, and look forward to gaining more insight from the discussion.
Am new to the topic as well and have not really an idea Eg how the scientist could be forced to use the method of citizens scientists ethical if it isn’t enforcet by law and controlled by someone. Who could this someone be? How is he/she be paid for it…
About 10 years ago I worked as a study nurse helping my doctor with the medical data testing new medication. We were of course controlled very often - if the data was protocoled correctly, and more stuff.
There where guidelines like good laboratory practice - but to be honest, I can’t remember much details. And I am not sure how much of this knowledge is under “confidentially terms”.
Maybe, the team starting the public discussing would summarize some prozedures with medical ethics so people completely new have a basics to discuss and everyone could compare medicine ethics with citizens “games” (I don’t like the word game - it feels like it’s completely harmless and no need to protect anyone from anything.)
A few days ago Libuse took a bit time to discuss with me in German as I am hard of hearing and couldn’t follow the English discussion.
I think what she told me is similar with you: the team likes our opinions. Especially as we are now to the topic and ask a lot of questions persons who work with this on a daily basis don’t see.
So, great you wrote. So I don’t feel alone with my questions!
Have a great day.
Best, Eva
@pietro
Before you could seek ethical review you would first need to be able to define what is considered right and wrong about a citizen science project and its research. This in itself could be a major undertaking since it would be based on a composite of different values and opinions of society. In a medical context we might easily agree on “do no harm” as one of the foundational values that drives medical interventions and therefore becomes one of the benchmarks for ethical review. This may not be useful in a non-medical context. Many people may not even agree with this as a medical value as they weigh risk and reward for leading edge treatments for terminally ill patients.
A few starting values for citizen science projects might be:
1.) Must be good science. At the core the projects should be well thought through (designed) so that when results are obtained, they are useful for answering the scientific questions that have been asked. This might include a “do no harm” clause for medical research projects.
2.) Should be efficient. Although citizen science labor may be free, it is a resource that shouldn’t be wasted. Is the experimental design efficient? Is the approach being taken for answering the question the best use of a limited resource?
3.) Quality of input. Does the citizen science project need to screen the contributors? Is there a possibility that bad input by an unqualified citizen scientist could do more harm than good? Should you achieve higher efficiency by limiting the citizen scientists who participate?
4.) Transparency. The citizen science project should clearly establish who benefits from the research. Does this citizen science project only support the public good? Will the research be shared to solve societal issues or is this being done to profit a corporation?
5.) Feedback to citizen scientists. Citizen science projects need to provide feedback about their ongoing progress and the final results. The investment of time by the citizen scientist must be rewarded with specific and tangible feedback about the project. The citizen scientist should never have to wonder what happened to their input.
I may add to this list as other thoughts come to mind.
The ethical review could then be the “Seal of Approval” that a given citizen science project has been reviewed by an IRB and has satisfied the above citizen science project values. This could be an approval that citizen scientists could look for when searching for new citizen science projects to engage. If a project doesn’t have this seal of approval I may not want to invest my time.
Hey gcalkins,
Wow, that is a really great summary!
Thanks for it.
May I add something to your list which popped into my mind?
What about psychology?
How to protect Eg minors from horrifying pictures? Or anything not for their age?
The Apps I know of can easily be fooled about age.
I don’t like to read crimis (or even thriller) but I get them shown in “recommends for you”. Don’t know how to explain it - um, in media I have no way to avoid the booklist as in a library I can ignore it, don’t have to go to the place where these books are shown.
As an example.
I don’t know how to explain my question in a better way.
Eg I am a great animal lover. I know Alzheimer research is a social valueable process and I don’t want to have people suffering from loss of their memories.
But I don’t want to be connected with testing animals.
So could I select bevore which project I would support? Would I even get the information where the information to be collected are from?
Hope I expressed my concern without hurting anyone.
Hi @Eva
Excellent suggestions. I see two different items that could be added to the list…
6.) Appropriateness rating or disclosure. Some projects may contain explicit images that may not be appropriate for all audiences. Just like with films/movies you could include a rating about some images that may not be suitable for all audiences. Possible medical procedures, blood, biological specimens, etc.
7.) Treatment of animals. This item may fall under the transparency topic, but discloses how the research data is collected and how laboratory animals are treated and/or euthanized. People vary widely on what kind of procedures are acceptable in the collection of research data. This is a tricky topic since it could also lead to some activist groups taking action against citizen science research that harms animals.
@gcalkins
Yes.
This is exactly what I meant. Thanks for the “translation”. Please feel free to add this to your list, if you like.
To 7.:
Yes, that’s tricky. At the moment I have no idea how to protect the people joining it and marking it animal testing.
Curious what everyone else thinks about it. But I would say it is relevant to the ethics discussion.
The Problem seems to me - a town in Germany (was it Hamburg?) was sometime this year in the news because the animals were treated so badly - and no one did seem to look that the standarts of the “animal welfare” in science were practiced.
The authorities just seem to look away. Probably because they don’t have enough persons to control everything.
Thanks, your summary is a great way to start a list. What ethics we want. And where the problems are.
Thank you all for bringing up these aspects! And as @Eva mentioned, all perspectives are valued and important!
I would like to add an argument from the chat during our workshop on September 11th: Different participants argued that independent review would be needed because there is always the possibility of unintentionally missing critical ethical issues.
I agree that it’s important to include the perspectives of others and some sort of review but I also think that the review process must align with the specific research field.