The retraction of a paper looking at posts in a Reddit subforum about mental illness has once again raised questions about informed consent in research using public data.
To study the experience of receiving a diagnosis of schizophrenia, a U.K.-based team of researchers collected posts from the Reddit subforum r/schizophrenia, which is dedicated to discussing the disorder. They analyzed and anonymized the data, and published their findings in June 2024 in Current Psychology, a Springer Nature journal.
The paper prompted backlash on X in the subsequent months, and in the Reddit community used for the study. People on the subreddit were concerned about the lack of consent, potential lack of anonymity, and the hypocrisy of discussing ethics in the paper while not seeking consent, a moderator of that subreddit who goes by the handle Empty_Insight told Retraction Watch.
“The subreddit has a clear rule that all research requires approval of the moderators, which was affirmed to be sufficient by the community after the fact,” Empty_Insight, who coordinates all research conducted on the subreddit, told us. “However, no such attempt at contact was made.”
“It is no small feat for someone with schizophrenia who grapples with paranoia to speak in a semi-anonymous setting, so the intrusion is particularly violating in light of that,” the moderator added. They also said this intrusion feeds historical mistrust of researchers due to “the not-so-distant past of unsavory, unethical practices where consent was foregone and the only reason that could be given was ‘The ends justify the means’.”
Researchers have long debated the ethics around informed consent when using public data. In 2016 the Center for Open Science took down a dataset of users of the dating site OkCupid from its Open Science Framework because it contained potentially identifying information on people who did not consent to its use. Earlier this year, we reported on researchers who posted AI-generated messages on a Reddit subforum without the forum’s, or user’s, knowledge.
Following “extensive complaints, feedback, and discussions within the team, other researchers, and people with lived experiences,” the researchers chose to retract the paper, the December retraction notice stated.
“We are sorry that our work caused distress to the community in question and consequently retracted the paper,” said lead author Minna Lyons, a lecturer at Liverpool John Moores University in England.
Although the researchers stated in the paper that they “secured ethical approval,” relatively few study authors who use data from Reddit seek approval from a research ethics committee. A 2021 study found only 13.9% of studies examined mentioned a related term like “institutional review board.”
Many papers have discussed the ethics of using social media, and Reddit in particular, in research. Groups such as the Association of Internet Researchers have published ethical guidelines that detail the difficulties in obtaining informed consent and urge researchers to mitigate harm by considering the questions they use in their research, how they process sensitive data, and how they deal with risk during data storage, aggregation, and publication.
“This an important emerging area where the researchers using pervasive data and internet technologies are giving more thought to how ethical standards should be applied, and we commend the authors for taking the proactive step to retract their paper given the concerns around consent,” Ellie Gendle, head of journals policy at Springer Nature, told Retraction Watch in an email. Due to “challenges in forming a universal policy” and a lack of ”consistently held standards” on the use of these types of data and technologies, the journal evaluates each paper on a case-by-case basis, she told us.
After learning about the Current Psychology paper, the subreddit moderators conducted a poll of its users on how to address future research requests. They chose to stick to the existing research approval policy, and added a user flair – a tag that appears next to a user’s handle – to opt out of data collection for research purposes. Empty_Insight noted that people didn’t use this flair, so they have since removed it.
The decision to retract the paper “sets the right precedent, and sends the signal that what degree of privacy can be preserved for those with psychotic disorders will be respected,” Empty_Insight said. “We cannot forgo consent for the sake of convenience.”
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That’s ridiculous. Could be taken wildly out of proportion. Study on letters written to the editor? Nope! Study of articles written in different newspapers? Nope! Heck, studies based on other published studies – Nope! No “informed consent”!
“We didn’t know we were being experimented on!” You weren’t being experimented on, you were being studied based on actions you took in a basically public setting. Wildly different.
Its reddit, of course its ridiculous, what’d you expect
1. The fact that the object of study had specific rules about research changes the calculus. This is not observing, e.g., passersby in public, but people actively saying “We do not wish to be studied without approval.” Its one thing to study a population without getting informed consent. Its a whole other thing to study a population which has proactively refused to participate unless certain conditions are fulfilled.
2. Surely you’re not arguing that studying material in scientific journals or newspapers is comparable to what happened here?
“We do not wish to be studied without approval.” How did people who think this way arrive at the idea that other people need their permission to perceive them? This seems to me a great example of the type of disordered thinking that Reddit’s upvote culture seems to have normalized among many users. People expressing themselves in public will be perceived by anyone who happens to notice them, whether or not they approve of being noticed.
To re-use what I wrote to Tom K: Surely you’re not arguing that ‘being perceived’ and being the subject of a scientific study are substantively the same?
Scientific research is subject to specific rules of conduct. E.g., the same behavior can be totally fine for a journalist to do, while a scientist doing the same as part of a study might need ethics approval.
Putting aside for the moment any concerns about expectations of privacy (real or misplaced) on the part of respondents, it seems to me that whether or not consent was necessary is secondary to the question of whether any aspect of the data as collected, analyzed, and reported, put respondents at some level of risk.
Please add links to the X users who posted the initial critiques of the paper. Credit those who actually inspired deeper evaluation of the research.