Iatrogenic Harm in Gender Medicine

Abstract

Although transition regret and detransition are often dismissed as rare, the increasing number of young detransitioners who have come forward in recent years to publicly share their experiences suggests that there are cracks in the gender-affirmation model of care that can no longer be ignored. In this commentary, I argue that the medical community must find ways to have more open discussions and commit to research and clinical collaboration so that regret and detransition really are vanishingly rare outcomes. Moving forward, we must recognize detransitioners as survivors of iatrogenic harm and provide them with the personalized medicine and supports they require.

Despite unparalleled advances in medical technology, rapid information dissemination, and increased attention to evidence-based medicine, iatrogenic illness resulting from harmful medical practices remains ubiquitous (Genius, 2006; Panagioti et al., 2019). In their book titled, “Medical harm: historical, conceptual and ethical dimensions of iatrogenic illness,” Virginia Sharpe and Alan Faden, reflect upon the paradox of iatrogenic harm: “It defies our expectations about medicine; our expectations that medicine will benefit, rather than harm us and that individual and institutional providers will improve rather than diminish our health” (Sharpe & Faden, 1998, p. 1). Medical misadventures that have come to light in recent decades include cardiac valvular damage resulting from popular appetite suppressants (Khan et al., 1998), excess risk of heart attacks and strokes with certain anti-inflammatory drugs (Topol, 2004), an epidemic of opioid overdose deaths in communities across North America (CDC, 2022; Health Canada, 2023), and, as I will argue in this commentary, rising numbers of young people who regret their gender transition, mourn the permanent changes made to their bodies, and are now detransitioning, i.e., discontinuing gender-affirming medical interventions, such as hormonal therapies, or seeking to reverse the effects of hormones or surgeries.

Many proponents of youth gender transition downplay regret as vanishingly rare (Astor, 2023; Coleman et al., 2022; McNamara, Lepore, & Alstott, 2022; Respaut, Terhune, & Conlin, 2022), and it’s easy to understand why: if young people can be mistaken about their gender identity and regret their decision to transition, then the diagnostic approach endorsed by many gender-affirming clinicians, which is based upon the premise that young people “know who they are,” (Ehrensaft, 2016, p.114) and adults should “[follow] their lead” (Ehrensaft, 2016, p. 54), is clearly failing some patients. The processes of differential diagnosis and clinical assessment that clinicians perform in all other patient encounters have been recast as unnecessary “gatekeeping” under the gender-affirming care model (Amengual, Kunstman, Lloyd, Janssen, & Wescott, 2022; Ashley, 2019; Cass, 2022). Many detransitioners report not receiving sufficient exploration of psychological and emotional problems before being offered hormones or surgery (Gribble, Bewley, & Dahlen, 2023; Littman, 2021; Pullen Sansfaçon et al., 2023; Vandenbussche, 2022). “Minority stress,” (i.e., the theory that external forces, such as sigma and discrimination related to gender non-conformity, are the drivers of co-occurring mental health problems) is often evoked to explain away self-harm, depression, anxiety, eating disorders, and even autism (Coleman et al., 2022; Kingsbury, Hammond, Johnstone, & Colman, 2022; Rood et al., 2016; Turban & van Schalkwyk, 2018), despite evidence demonstrating high rates of mental illness and neurodiversity before the onset of gender-incongruence (Becerra-Culqui et al., 2018; Kaltiala, Heino, Tyolajarvi, & Suomalainen, 2020; Kaltiala-Heino, Sumia, Tyolajarvi, & Lindberg, 2015; Kozlowska, Chudleigh, McClure, Maguire, & Ambler, 2020; Littman, 2021). Gender-affirming medical interventions are sold as antidotes to enduring consequences of childhood adversity, trauma, or unfortunate family circumstances whilst potential adverse effects and medical complications are often downplayed (Evans, 2023; Gribble et al., 2023; Littman, 2021; Marchiano, 2021). Unsubstantiated claims that suicide is an inevitable outcome if medical transition is delayed are frequently propagated by clinicians and advocacy groups (Biggs, 2022; Kirkup, 2020; Terhune, Respaut, & Conlin, 2022), whilst other ways to address, treat, or live with gender dysphoria are conflated with conversion therapy (Ashley, 2023; Rafferty et al., 2018).

Gender services in many countries are fragmented and the truth is we have no idea how many young people will eventually come to regret their gender transition. No large-scale studies have followed people who transitioned as adolescents over the long-term, and in one survey, only 24% of detransitioners reported returning to their gender clinic to inform them of their detransition (Littman, 2021). Studies describing low rates of regret have largely focused on people who transitioned as adults in an era when many more safeguards were in place (Dhejne, Oberg, Arver, & Landen, 2014; Wiepjes et al., 2018). They also suffered from high rates of loss to follow-up (Blanchard, Steiner, Clemmensen, & Dickey, 1989; Lawrence, 2003; Rehman, Lazer, Benet, Schaefer, & Melman, 1999; Wiepjes et al., 2018) and frequently defined regret narrowly as a request for legal document change or reversal surgery (Dhejne et al., 2014; Narayan et al., 2021). More recent studies that include the predominant adolescent-onset variant of gender dysphoria suggest that between 10% and 30% of those who undergo medical transition discontinue it within 16 months to four years (Hall, Mitchell, & Sachdeva, 2021; Roberts, Klein, Adirim, Schvey, & Hisle-Gorman, 2022), with many detransitioners experiencing significant regret over irreversible physical changes (Littman, 2021; Vandenbussche, 2022). These high rates of treatment discontinuation and detransition prompted authors of one study to suggest that “…questions may be raised about the phenomenon of overdiagnosis, overtreatment, or iatrogenic harm as found in other medical fields”(Boyd, Hackett, & Bewley, 2022). Given that historically regret has taken up to decade or more to materialize (Dhejne et al., 2014; Wiepjes et al., 2018), the full extent of regret and detransition in young people transitioning today will not be known for many years and will require that appropriate follow-up occurs.

There is no single narrative that adequately captures the experiences of detransitioners. Many cite internal factors such as worsening mental health or the realization that gender dysphoria was a maladaptive response to trauma, misogyny, internalized homophobia, or pressure from social media, as the primary drivers of their decision to detransition (Evans, 2023; Gribble et al., 2023; Littman, 2021; Vandenbussche, 2022). However, some proponents of youth gender transition focus on external forces such as stigma, discrimination, or lack of social support (McNamara et al., 2022; Turban, Loo, Almazan, & Keuroghlian, 2021; Wu & Keuroghlian, 2023). Moreover, there have been attempts to reframe detransition as a neutral or even positive outcome—part of a larger “gender journey,” “identity exploration,” or “dynamic desires for gender-affirming medical interventions” (Coleman et al., 2022; Turban, Brady, & Olson-Kennedy, 2022). Rather than acknowledging the severity of the problem or that the medical community bears responsibility for the harm done to these young people, the message is that there have been no mistakes - the situation is dynamic.

Past accounts of iatrogenic harm illustrate the need for vigilant scrutiny of prevailing medical dogma (Genius, 2006) and when evidence emerges that an intervention has caused serious harm, we must ask what went wrong, what was missed, and what should have been done differently. But most proponents of youth gender transition refuse to acknowledge that there are cracks in the gender-affirming care system (Coleman et al., 2022; McNamara et al., 2022). For them the science is settled: every major medical association in the United States supports gender-affirming care for minors (Hembree et al., 2017; Lopez et al., 2017; Rafferty et al., 2018; Simmons-Duffin, 2022). But their support is not based on compelling evidence and professional opinion is divided (Block, 2023). A growing number of health authorities in countries that were once proponents of youth medical transition are now changing practice and prioritizing psychotherapy and treatment of co-occurring developmental, psychosocial, and mental health problems after their own systematic reviews found the evidence supporting gender-affirming medical interventions to be weak and uncertain (Block, 2023; Cass, 2022; COHERE, 2020; Ludvigsson et al., 2023; NICE, 2020a, 2020b; Socialstyrelsen, 2022). Fundamental knowledge gaps include the long-term impact of treatments on gender distress, mental health, quality of life, cognitive function, osteoporosis and fractures, metabolic parameters, cardiovascular disease, sexual function, and fertility (COHERE, 2020; Hembree et al., 2017; Ludvigsson et al., 2023; NICE, 2020a, 2020b).

Little is known about the psychological and medical needs of detransitioners and there is currently no guidance on best practices for clinicians involved in their care. The World Professional Association for Transgender Health (WPATH) recently published its eighth Standards of Care document and chose not to include a chapter on detransition (Coleman et al., 2022). Likewise, the Endocrine Society’s Clinical Practice Guidelines for Gender-Dysphoria/Gender-Incongruence offers no advice on how to safely stop hormonal therapies (Hembree et al., 2017). The American Academy of Pediatrics failed to acknowledge the possibility of regret and detransition in their policy statement on care for children and adolescents with gender dysphoria (Rafferty et al., 2018). Perhaps it should not be surprising then that many detransitioners find it difficult to access clinicians with the requisite knowledge to manage enduring adverse effects of hormones and surgical complications (MacKinnon et al., 2022; Vandenbussche, 2022). Some stop hormonal therapies “cold turkey” without medical supervision, instead turning to online communities and social media for advice (MacKinnon et al., 2022).

We do not know what is driving the sharp rise in the number of young people being diagnosed or self-diagnosing with gender dysphoria (Cass, 2022; Kaltiala-Heino, Bergman, Tyolajarvi, & Frisen, 2018; Zucker, 2019). Likewise, we do not know why the case mix has rapidly shifted from predominantly young boys and middle-aged men to primarily adolescent females with complex mental health problems and neurodiversity (Aitken et al., 2015; Kaltiala-Heino et al., 2015; Zucker, 2019). The natural trajectory of transgender identification in this novel cohort is uncertain and we cannot predict who will be helped by gender-affirming medical interventions or who will be harmed. The long-term safety and effectiveness of these interventions is yet unknown (Hembree et al., 2017; Ludvigsson et al., 2023; NICE, 2020a, 2020b). We will not find answers to these questions by shutting down debate and we miss out on urgently needed data that could improve the care of future patients by ignoring detransitioners. The medical community must find ways to have more open discussions and commit to research and clinical collaboration so that regret and detransition really are vanishingly rare outcomes. Last, we must recognize detransitioners as survivors of iatrogenic harm and provide them with the personalized medicine and supportive care that they need.

Disclosure statement

The author declares there is no conflict of interest.

Additional information

Funding

Open access funding provided by the Society for Evidence-Based Gender Medicine.