I have a comment on the recent retraction of “Rapid Onset Gender Dysphoria: Parent Reports on 1655 Possible Cases”. I happen to have some expertise on this precise issue.
Rapid Onset Gender Dysphoria (ROGD) is an alleged phenomenon where kids suddenly experience gender dysphoria. The hypothesis is that this is caused by social contagion and therefore the kids are not authentically trans. The entire research area is fundamentally flawed because it’s based on the accounts of parents who frequent ROGD forums, instead of, you know, talking to the kids in question. The kids likely have a better idea than the parents just how “sudden” the onset really was.
But that’s not why the paper was retracted. The journal stated that it was retracted “due to a lack of documented consent by study participants”. The stated reason is not obviously connected to the real problems with ROGD research, so it sounds pretextual.
This ROGD study has two authors: Suzanna Diaz, a pseudonymous person affiliated with Parents of ROGD Kids, and Michael Bailey, affiliated with Northwestern University. The study is based on a non-academic survey distributed by the first author, and analyzed by the second author. In order to be published in research journals, any human subjects research is required to be approved by IRB, an institutional ethical review board. Since the survey was not academic, they did not get IRB approval for data collection. Bailey tried to get IRB after the fact, but since it was after the fact, they declined to review. And the journal editor allowed this.
Here is where my particular expertise comes in. I am a lead in The Ace Community Survey, which is an online survey regarding asexuality. We are not an academic organization, we do not publish in research journals, and our work does not qualify as “research” by bureaucratic definitions. So we are not required to get IRB approval. However, when a researcher takes our data and uses it in a study to be published in an academic journal, they are obligated to get IRB approval. Although some leeway may be made, given the non-research nature of the original survey, the IRB will want to see informed consent from participants, and minimal risk of harm. Accordingly, The Ace Community Survey is quite upfront with participants about the possibility that data may be shared with researchers. Additionally, data collection and data analysis can be reviewed separately by the IRB, so at the very least researchers using data they didn’t collect ought to obtain IRB approval for their data analysis. Even with all these measures, researchers using our data have had some headaches over this.
So let’s look at this ROGD study. Although I do not have the full text of the survey, the paper does include the text of the survey solicitation. While participants may have a reasonable expectation that their response may be used by Parents of ROGD Kids, it does not appear they were informed of the possibility of data being used in research. If parents had known this, they might have adjusted their answers to better protect their anonymity. The risk of harm to the parents participating in the study is minimal, but I do think this is a legitimate problem with the study that the journal editor should have objected to. It probably would have been better if objections were raised during review, rather than retracting it after publication, but oh well.
I would also like to raise another issue related to informed consent. The participants, the parents, may have given consent (albeit not totally informed). But what about the kids? The kids are what we call secondary participants. They don’t participate directly in the survey, but the survey is asking about them. The kids did not give any consent, informed or otherwise. And I do not think an IRB ought to waive the requirement for informed consent, because the risk of harm to those participants is not minimal! Gender-questioning kids are in a vulnerable position, and there could be identifiable information within the quotes in the published paper.
Furthermore, some of these kids are below the age of 13, and that’s when stricter standards really kick in. Our survey would never dream of having participants below the age of 13!
Finally, the IRB does not just consider the harm to individuals. According to the Belmont Report, which established this whole process, one of the core principles is justice. It’s a justice problem when the burden of research is disproportionately shouldered by one class of people, while the benefits go to another class. For example, when a study uses prisoners out of convenience, but the benefits of the study largely go to non-prisoners. There is a potential justice concern here, when gender-questioning kids as a class are disproportionately harmed.
So, I have two guesses about why the journal retracted the paper, and why they cited lack of informed consent.
My first guess, is that this is the result of disagreement among the journal editors. For context, the journal, Archives of Sexual Behavior is not exactly a bastion of trans-positivity. Its chief editor is Kenneth Zucker, known for his clinic that essentially promulgated conversion therapy for potentially trans kids. It’s possible that paper’s critics could not bring about a consensus on the more substantive issues with the study. However, they could reach a consensus on the relatively minor–but entirely legitimate–issues with its ethical standards.
My second guess is that the retraction is actually because of the lack of informed consent from secondary participants. I don’t know if that’s true, but I hope so because I think it’s the more serious issue. If the study had properly treated secondary participants, this research would likely not exist, because the kids would not give consent, or else they would provide information that controverted the accounts of the parents.
Either way, I think the retraction is correct.