I have major ethical concerns about the Adolescent and Young Adult Gender Dysphoria Outcomes Study (AYAGDOS)

Last week, I attended a symposium on stem cells and regenerative medicine at the university where I work. As a biologist, I always enjoy hearing about the big ideas other people are working on. I even got to hear about a few ongoing clinical trials representing major advances in treatments for debilitating conditions.

One speaker shared a tragic result. Their lab is working on a treatment for a type of brain cancer, and they spent years establishing a strong theoretical basis with evidence in animal models. They received permission from their Institutional Review Board (IRB) and government regulators to enter clinical trials. But, they quickly realized that patients receiving their treatment were less likely to survive than patients receiving traditional treatment.

The speaker shared how they made the difficult decision to stop the trial early. Their treatment was putting human lives in danger, and now the researchers need to reflect on why. Perhaps they gave the treatment at the wrong time. Or, maybe their theory was doomed from the start.

These considerations are the cornerstone of research ethics. The safety and respect of human subjects must be of utmost importance. The rights of humans participating in research studies were first codified at the Nuremberg Trials, where Nazi scientists faced trial for their experimental atrocities.

Since Nuremberg, human research participants have basic protections, including a mandate for voluntary consent, the avoidance of mental and physical suffering, educated and well-intentioned investigators, and balancing of the risks with the problem being addressed. In the absence of these basic considerations, the research must stop.

The Adolescent and Young Adult Gender Dysphoria Outcomes Study (AYAGDOS) is an ongoing study at Northwestern University for trans people age 13-25 and their parents. The stated goal of AYAGDOS is to assess the long-term outcomes and life satisfaction of gender transition. The AYAGDOS investigators hope to provide clarity on the “controversial” practice of gender transition.

Frankly, “controversial” is a better descriptor for the AYAGDOS investigators: J. Michael Bailey, Lisa Littman, and Kenneth J. Zucker. These three are major players in what the Southern Poverty Law Center (SPLC) calls “the anti-LGBTQ pseudoscience network.” Each AYAGDOS investigator has a history of anti-trans bias, major ethical lapses, and shoddy scholarship.

Their current study is built on the notion that too many young people are transitioning. The investigators ask: “Does the increase reflect true cases of gender dysphoria which would have gone unnoticed until recently? Or does it reflect a new type of gender dysphoria caused by peers influencing each other to adopt transgender identities?” While the study wants to gather experiences from trans adolescents, it doesn’t sound like the authors are inclined to believe their testimony. What’s more, the study is funded by a eugenicist tech mogul and two anti-trans organizations.

We should be concerned about the psychological wellbeing of the study’s participants, not just in the short-term for having to interact with a research team with such disdain for their lives but also in the long-term given the political ends that the study’s investigators hope to achieve.

The primary investigator for AYAGDOS is J. Michael Bailey, a professor of psychology at Northwestern University. According to SPLC, Bailey has been tied to queerphobic and eugenic organizations since at least 2003. He is most famous for writing the pop science book, The Man Who Would Be Queen: The Science of Gender Bending and Transsexualism. Bailey’s book advocates for a theory known as autogynephilia.

Bailey did not originate the theory of autogyenphilia but rather amplified the work by sexologist Ray Blanchard. Blanchard sought to create a typology of transfemininity based on sex practices. Transfemme lesbians were autogynephiles, i.e. motivated to transition by the sexual desire to embody womanhood. In contrast, straight transfemmes are taking on feminine expression to recreate heterosexual relations. Surely trans women are more than our presumed sexualities, right?

According to biologist Julia Serano, Blanchard’s theory “started out as junk science.” For years, autogynephilia existed only in the annals of obscure journals until, as Serano notes, Bailey popularized the concept. From there, autogynephilia proliferated in academic circles despite the mountain of evidence against it. Autogynephilia even made a credulous appearance in season 3 of the popular television show White Lotus.

However, Bailey’s book was far worse than just bad scholarship. The trans woman whose story is featured prominently, Anjelica Kieltyka, filed a formal complaint that she never consented to be featured and that Bailey fabricated much her story. Since then, Bailey’s conception of voluntary consent hasn’t improved. One of Bailey’s 2023 papers was retracted (after pressure from trans people and allies) because he failed to receive informed consent from the participants. Bailey’s grasp of basic research ethics is tenuous at best.

Bailey also has shown poor judgement in his teaching duties at Northwestern. His undergraduate class on human sexuality was canceled in 2011 after Bailey organized an optional “live demonstration” where a woman operated a fucksaw until orgasm. The session was attended by ~100 undergraduate students. This ordeal highlights Bailey’s poor judgement and mixing of his fetishes with his professional work.

Bailey’s co-principal investigator is Lisa Littman, a member of the advisory board of Genspect, an SPLC-designated hate group. She is not currently affiliated with an educational institution. Littman is most famous for the theory of rapid-onset gender dysphoria (ROGD) which she invented in a 2018 paper published in PLoS One. Despite being peer reviewed, Littman’s original manuscript was so littered with hyperbole that she was forced to issue a correction one year later.

Littman argues that ROGD is a new, concerning form of gender dysphoria that quickly spreads among peer groups like a “contagion.” (Note how she dehumanizes trans people by comparing trans identities to a communicable disease.) To reach this conclusion, Littman relied entirely on reports from parents who had the perception that their children were making rash decisions about gender transition. In that study, she never once asked a trans adolescent why they were transitioning.

Littman willfully over-interpreted her data. Yet, ROGD, like autogynephilia before it, continues to be regurgitated by Littman and anti-trans activists who seek to deny autonomy to trans people. ROGD is the (pseudo)scientific theory behind much of today’s international moral panic targeting trans people. With AYAGDOS, Littman is likely looking to manufacture more fuel for her political ends.

The final co-investigator of AYAGDOS is Kenneth J. Zucker, the former clinical lead of the Gender Identity Clinic at the Centre for Addiction and Mental Health in Toronto. His clinic closed in 2015 after reports that Zucker was practicing conversion therapy. An external review found Zucker was “out of step with current clinical and operational practices.”

To give you a sense of Zucker’s clinical philosophy, consider the experience of Zane Bernhard who first went to Zucker’s clinic at age 6. Zane enjoyed playing with Barbies and dressing as a princess. Warning that Zane could grow up to be gasp a woman, Zucker instructed the Bernhards to confiscate the dolls and discourage feminine behavior. Zane’s mom later told the National Post, “We were pretty horrified by the whole experience because there was really no support for who Zane was.”

Additionally, Zucker is currently the editor-in-chief of Archives of Sexual Behavior which was founded in 1971 by Robert Green. In its inaugural article, Green opened with a clear intention: “My focus will be what we might consider the prevention of transsexualism.” Zucker has continued that legacy by acting as a friendly editor to anti-trans pseudoscience. Littman, Bailey, and Blanchard all currently serve on the editorial board of the Archives of Sexual Behavior.

Together, Bailey, Littman, and Zucker represent three major facets of contemporary anti-trans pseudoscience: autogynephilia (Bailey), ROGD (Littman), and conversion therapy (Zucker). Their work fuels anti-trans activists who seek to further marginalize trans people in society. They are unable to conduct AYAGDOS in good faith.

According to its consent form, AYAGDOS is funded by the Department of Psychology at Northwestern, the Conru Foundation, the Institute for Comprehensive Gender Dysphoria Research, and the Santa Fe Boys Fund. These funding sources underscore the reactionary political vision for the study.

The Northwestern Department of Psychology is Bailey’s home department. Bailey is the former chair of the department but was forced to resign as chair in 2004 after Kieltyka’s complaint. The department’s support for Bailey has not wavered, however, and they are complicit in Bailey’s pseudoscience.

The Conru Foundation was founded by Andrew Conru, a Web 1.0 tycoon who is most famous as the founder and CEO of FriendFinder Networks. (Yes, Conru created adult sites that pop up when you find yourself in a questionable corner of the Internet.) On his personal website, he also proudly claims to have pioneered online shopping carts and centralized ad banners, meaning we have Conru to thank for the intensification of capitalism on the Internet.

In October 2024, Hope Not Hate revealed that Conru donated $1 million to the Human Diversity Foundation, an international network of eugenicists. Undercover recordings revealed organizers at the foundation were advocating for scientific racism and ethnic cleansing. We must ask ourselves if Conru has a similar, eliminationist motive in funding AYAGDOS.

AYAGDOS is also supported by the Institute for Comprehensive Gender Dysphoria Research (ICGDR), which has recently rebranded itself The Gender Dysphoria Institute (GDI). Littman serves as the President of GDI, with Bailey as treasurer. The AYAGDOS consent document indicates that Zucker is also affiliated with ICGDR. Notably, however, Zucker’s CV does not list an affiliation with either organization as of this writing. ICGDR/GDI is known to fund anti-trans pseudoscience and took in $226,000 of revenue in 2024. Its sources of revenue are currently unknown.

The final funder of AYAGDOS is the Santa Fe Boys Fund, an organization hoping to address the “boy crisis.” The group claims that boys face a world that is “a more unaccommodating atmosphere than ever before.” This philosophy reeks of misogynist grievance.

According to IRS returns, in 2024 the Santa Fe Boys Fund (also known as the Santa Fe Boys Educational Foundation) gave $100,00 to ICGDR and $2,000 to Democrats for an Informed Approach to Gender, an organization advocating for the Democratic Party to abandon trans people and our rights. The same year, the fund wrote off $111,500 as charity in support of “public discourse, projects, and research to better understand the unique developmental needs of young males.” The Santa Fe Boys Fund’s sources of revenue are currently unknown.

These funders are alarming, revealing how regressive politics are bankrolling AYAGDOS. Conru has a history of supporting neo-fascist organizations, and both ICGDR and the Santa Fe Boys Fund support anti-trans political advocacy. These funding sources remind us of the overt political, rather than intellectual, nature of AYADGOS.

For all the aforementioned reasons, AYAGDOS is compromised. Its investigators and its funders are political operatives with a documented history of promoting pseudoscience to roll back the rights of trans people. Given the association between their anti-trans policies and suicide among trans adolescents in both the United States and the United Kingdom, it is unconscionable that two IRBs approved this study.

AYAGDOS is ongoing and currently enrolling trans adolescents and their parents. If you are eligible to enroll, don’t do it. If you have already enrolled, you can drop out of the study at any time. This is your right as a participant. The investigators do not have your best interests in mind.

According to the consent document for AYAGDOS, any questions, concerns or complaints can be directed to Bailey at [email protected]. You can also reach out to the investigators through the study’s website. Additionally, the Northwestern IRB can be contacted in the event they don’t not respond, you want to talk to someone else, or you have input about the study. The Northwestern IRB can be reached by email at [email protected] or by phone at +1 (312) 503-9338.

That is not to say that all studies involving trans subjects are compromised. I often write about interesting studies on trans health. It is possible to ethically study trans health. However, there are numerous bad actors, so it is always worth researching a study’s investigators. Search their names in PubMed or Google Scholar, and read their work. You always have the right to say no to participating in a research study, including after you have enrolled.

AYAGDOS is an exercise in pseudoscience. The alleged problem being addressed is just that — alleged. Unbiased research routinely finds that trans adolescents are confident in their identities and that detransition is rare. I believe that AYAGDOS is unnecessary, does not pass ethical muster, and will put lives in danger in the long run. It should be terminated now.