Bioethics Forum Essay
Pediatric Gender Care: Absence of Evidence Is Not Absence of Efficacy
In “The Cure for Politicized Pediatric Gender Care,” Moti Gorin argues that a U.S.-based systematic review, conducted by a trusted major medical organization such as the National Institutes of Health or the National Academy of Medicine, is needed to develop consistent standards for pediatric gender care. While the intent behind his call is well-intended, it is based on a flawed premise, and the reasoning for recommending such a review is unclear.
Systematic reviews derive information from published, peer-reviewed literature and, sometimes, grey literature—information developed outside of traditional academic or commercial publishing channels. The results from systematic reviews rely on the information contained in available manuscripts, white papers, conference abstracts, theses, and dissertations. However, simply because these materials can be found and may be in a published format does not mean they contain quality data. Thus, results drawn from systematic reviews are only as valid as the original sources from which they were drawn.
While there are have been hundreds if not thousands of published articles on the health disparities associated with youth experiencing gender dysphoria, from poor mental health outcomes and societal violence to suicide, the majority of this literature is from observational or cross-sectional studies. Most of these studies were conducted in academic medical center gender clinics among people with financial means who had access to quality care. Few studies have examined outcomes or experiences among people in rural areas or with limited means. Thus, in addition to lacking methodological rigor, the available data are not representative of the population. In other words, there is at best limited, poor-quality data from which to draw conclusions from systematic reviews.
As far as we are aware there have been no randomized controlled trials in pediatric gender care. The pool of available data is very limited. Thus, meta-analyses or systematic reviews are not likely to prove fruitful.
Is it reasonable, therefore, to request funding for more original studies? In fact, it may be unethical to suggest that randomized, placebo-controlled trials be conducted. The feelings of unresolved dysphoria, social stigma, and unacceptance are well known to be associated with the negative psychological effects of being transgender, and the literature abounds with reports of high rates of depression, anxiety, and suicidality among trans youth compared to their cisgender peers. Policies and legislation that restrict or forbid access to gender-affirming care have been shown to have life-threatening consequences. Thus, it could be morally dubious to allow one group access to puberty suppression and another group only psychological care. Although randomized trials are the gold standard of scientific research, designed to show causality, it may not be possible to launch such studies given the plight of potential subjects.
As Gorin notes, several professional societies have provided guidelines suggesting puberty suppression and gender-affirming hormones are standard of care. Yet the policy landscape for pediatric gender care is rapidly shifting to restrictions and penalties. Consider, then, the challenges of a parent of a dysphoric child: medical intervention now or suicide later? While we do not know the long-term effects of puberty blockers on cardiac and bone health, and there are likely some potential harms, we do know that dysphoric youth who cannot receive medical and psychological intervention often take their own lives. Poor-quality evidence from systematic reviews of the limited data available will not add much evidence on the efficacy of care. While evidence is greatly desirable, it may not be possible to create the studies that would generate it without harming those intended to benefit.
Another claim by Gorin needs clarification. We agree that “[a]ll patients deserve evidence-based care, and all physicians deserve to practice medicine with the help of authoritative clinical practice guidelines.” However, we don’t see how a systematic review, even by a trusted source such as NIH or the National Academy of Medicine, would help achieve that goal in pediatric gender care in the U.S., much less resolve the inconsistencies in pediatric gender treatment around the globe that Gorin rightfully laments.
We wish Gorin had explained more fully how evidence-based medicine, including consistent clinical practice guidelines, could blunt, much less cure, politicization of gender care for children. The raft of anti-care laws spreading through this country suggest that reason and evidence are not sufficient for the task.
Gwendolyn P. Quinn, PhD, is the Livia Wan Endowed Chair and Professor in the Department of Obstetrics and Gynecology at New York University Grossman School of Medicine. Lisa Kearns, MS, MA, is a senior researcher in the Division of Medical Ethics, at NYU Grossman School of Medicine. Arthur Caplan, PhD, is the founding head of the Division of Medical Ethics at NYU Grossman School of Medicine. He is a Hastings Center fellow and a member of The Hastings Center’s advisory council.