Autonomy and shared decision-making in Gender Affirming Medical Care for Youth
The role of evidence in pediatric gender medicine
In a recent interview with the TransNormal podcast, embattled Evidence-Based Medicine founder/researcher Dr Gordon Guyatt elaborated on the importance of client values and preferences in shared medical decision-making.
Guyatt has gotten embroiled in the hotly contested arena of gender affirming medical care (GAMC) after he participated in a series of systematic reviews looking at the efficacy of puberty blockers, cross sex hormones and mastectomies for the treatment of gender dysphoria.
The systematic reviews in question found low certainty evidence for these treatments. In a rare move, Guyatt and some (though not all) of his co-authors put out a statement decrying the misuse of his research to support legal bans on gender affirming medical care for minors.
In a statement on the McMaster University website, Guyatt and his co-authors called the weaponization of their research ‘unconscionable’ and sought to distance themselves from the Society for Evidence-Based Gender Medicine (SEGM), the organization that had originally commissioned the systematic reviews and funded them. SEGM is labelled a hate group by the US-based Southern Poverty Law Center (SPLC), though SEGM’s leadership strenuously deny this. SEGM has also stressed — and Guyatt et al. acknowledge this in their statement — that the researchers had complete research independence.
In his interview on the TransNormal Podcast, Guyatt made the argument that evidence never tells us what to do, as medical care always exists within a social context, and evidence must be interpreted through the lens of client values and preferences. Guyatt’s position appears to be that when the research evidence is low quality, as is the case here, client values and preferences become more important, not less. As long as clients understand the potential risks and benefits of a particular treatment, Guyatt argues that the client should have access to care. However he, in another interview, shies away from calling gender affirming medical care ‘medically necessary’.
The ethics of autonomy
Historically, medical ethics framed patient autonomy as a negative right; that is, autonomy in medical care used to mean the right to refuse a particular treatment (e.g. a patient who is a Jehovah’s Witness has the right to refuse a life-saving blood transfusion), rather than the right to demand a treatment (which would be positive autonomy). But in more recent years, this seems to be changing.
In addition to the evolving meaning of patient autonomy, the rationale for gender-affirming medical care specifically, has also shifted over time. Medical treatments for gender dysphoria were previously argued to improve patient mental health outcomes, reduce suicide risk and improve overall quality of life. However, studies looking at the link between gender affirming medical care and mental health outcomes have found a lack of evidence to support these claims,
Given that objective measures do not appear to show clear benefit for these treatments, the rationale for GAMC has shifted to a rights-based focus on patient autonomy instead. Canadian legal scholar Florence Ashley has argued for the right of patients to access medical interventions without gatekeeping and to achieve their ‘embodiment goals’. Under this rationale, outcomes are subservient to client desires.
This argument, that medical care should be based solely on a client’s desire for it, uncoupled from health outcomes, is perhaps taken to its extreme in the writings of Pulitzer-prize winning trans author Andrea Long Chu. In a surprisingly frank essay in New York Magazine, the author argues that minors should have access to these medical interventions, based on their desires alone. In other writings, Chu has acknowledged that gender affirming medical care has not improved her own mental health and, if anything, has worsened it. Yet, she defends her right to access medical interventions even if they don’t make her happy.
Where some might argue that Chu’s positions are fringe ones, the underlying stance (i.e. of medicine on demand, uncoupled from objective quality of life outcomes) is present in mainstream scholarly circles as well. For example, a peer-reviewed article in the BMC Medical Ethics journal recently argued that seeking to measure ‘effectiveness’ in pediatric gender care ‘required further reflection’.
While I doubt that Guyatt would support such an extreme interpretation of autonomy for GAMC, his emphasis on client values and preference above all else downplays the other important ingredients of ethical decision-making in medical practice — beneficence (acting in a patient’s best interest), nonmaleficence (the obligation to avoid wherever possible actions that could harm a patient), and justice (promoting fair distribution of resources and equal access to healthcare).
Because pediatric gender medicine involves children, the matter of patient autonomy and shared medical decision-making is especially fraught. How can a child truly understand what they are risking — longterm health-wise — when they pursue puberty blockers, cross sex hormones, or (in rare cases) surgery? Can a child truly know what they stand to lose or gain? Weighing a child's short-term desires against bodily autonomy over the lifespan is a consideration every clinician would do well to carefully consider.
For more background on the evolution of medical ethics and changes in rationale for pediatric gender medical interventions, please see Moti Gorin’s essay: What Is the Aim of Pediatric “Gender-Affirming” Care?