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Hormone Treatment of Children and Adolescents with Gender Dysphoria:

An Ethical Analysis by Brendan S. Abel

C hildren are generally unable to provide au- tonomous, independent informed consent for medical treatments. This long-standing tenet of

pediatric care protects children who often do not pos- sess fully developed cognitive decision-making capacity by preventing rash, permanent, and potentially regret- table medical decisions. As pediatric patients become adolescents and approach adulthood, their involvement in medical decision-making often increases to take into account their values and preferences.1 But until a youth reaches the age of majority, the medical decision-making process generally includes permission from parents or guardians and informed assent from the patient to the degree appropriate.

In the context of transgender health, most people are not comfortable with allowing a twelve-year-old child with gender dysphoria to elect to undergo gender reas- signment surgery. The likelihood is too high that the child would be unable to fully comprehend the scope of a decision that carries significant, permanent conse- quences, particularly because the decision to surgically change gender is based upon a conception of gender that can fluctuate during adolescent years. Conversely, how- ever, most people would not contend that this fluidity is reason to wholly deny certain medical care such as hor- monal treatments to transgender youth, a demographic with extremely high rates of violent behavior, self-harm, and suicide. This paper will explore ethical consider- ations relevant to this emerging debate of what therapeu- tic options should be offered to transgender children and adolescents.

Pediatric endocrinologists have been treating gender dysphoric adolescents with puberty-suppressing drugs and, to a lesser extent, with cross-sex hormone therapies for more than twenty years. Clinicians and thought lead- ers have mentioned ethical components of this emerg- ing practice in the few cohort studies and clinical review articles about the subject. However, ethics have generally been a secondary consideration in the medical academic literature. In this paper, I will provide a brief overview of the practice, summarize the current research on hormone treatment for transgender minors, and provide an ethical analysis of the practice.

Clinical Overview

Gender dysphoria, termed “gender identity disorder” in prior iterations of the Diagnostic and Statistical Manual of Mental Disorders, is marked by an incongru- ence between one’s experienced or expressed gender and the gender to which the person has been assigned (usu- ally at birth, referred to as the natal gender).2 The new DSM-5 defines an individual with gender dysphoria as a person who fulfills six of eight enumerated character- istics including a strong desire to be the other gender, a strong desire to dress as typical of the other gender, a dislike of one’s sexual anatomy, and a desire to have the sexual anatomy of the opposite sex. The diagnosis addi- tionally requires a finding of clinically significant distress or impairment in important areas of social functioning, such as difficulties maintaining social relationships or performing age-appropriate tasks (household chores or homework, for example), and it requires all of these diag- nostic elements to be manifested for at least a six-month duration. The presentation and corresponding treatment of gender dysphoria differs greatly from children to ado- lescents and adults, with children being more focused on

Brendan S. Abel, “Hormone Treatment of Children and Adolescents with Gender Dysphoria: An Ethical Analysis,” LGBT Bioethics: Visibility, Disparities, and Dialogue, special report, Hastings Center Report 44, no. 5 (2014): S23-S27. DOI: 10.1002/hast.366

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their behavioral gender differences as opposed to anatomi- cal differences. Nonetheless, gender dysphoria can be diag- nosed in childhood—at as young as three years old—even though only 10 to 20 percent of these children will still have gender dysphoria by the time they reach adulthood.3 While many young children will ultimately decide to re- vert to their natal gender—known as desisting—children whose gender dysphoria continues to adolescence are more likely to have it persist into adulthood.4

For years, children and adolescents presenting to medical professionals with nonconforming gender identities were considered outside of the realm of clinical management. Over the past twenty years, the possibility of a hormonal suppression of puberty and, more recently, of cross-sex hor- mone therapy, have provided a newfound ability to control a child’s sexual development. Gonadotropin-releasing hor- mones (GnRH)—which have been prescribed to suppress the onset of puberty for children with precocious puberty for thirty years—are now the first line of treatment of chil- dren with gender dysphoria.5 They are used to delay the onset of puberty for children with gender identify disorder to prevent secondary sexual characteristics in order to “buy time” to consider next stages of therapy.6 This treatment can provide welcome relief to a twelve-year-old natal boy, for example, allowing the child to delay any male second- ary sexual characteristics until approximately age sixteen. In some circumstances, the child will become comfortable with his natal gender, discontinue the GnRH, and progress through puberty as one would absent hormonal interven- tions. Yet other individuals can develop the secondary sex- ual characteristics of the opposite gender through cross-sex hormone therapy—androgens for natal females and estro- gens for natal males—and have the option of gender-reas- signment surgery at the age of majority. While the scope of such hormone therapy for children is limited (and dis- cussed in additional detail below), the practice of hormone therapy for gender dysphoria was formally recommended for adult and adolescent populations by the Endocrine Society, the European Society of Endocrinology, and re- lated professional societies via consensus clinical guide- lines in 2009.7 Aside from the psychological reprieve that hormone therapy can provide for adolescents with gender dysphoria, pubertal suppression allows, many argue, for optimal results of the potential cross-gender transition, as secondary sex characteristics of one’s natal sex are difficult to undo. In other words, if a natal male with gender dys- phoria can receive GnRH before pubertal changes such as the development of an Adam’s apple and the deepening of the voice, the transition to the female gender appearance will be better, as the cross-sex hormones cannot effectively undo characteristics of the original gender that have already progressed.8

Psychological counseling is an additional important ele- ment to the clinical treatment of all persons with gender dysphoria. Since the earliest protocols for treatment, psy- chological counseling has been emphasized, particularly given that a long diagnostic window can allow for effective long-term mental health care.9 In fact, the 2009 clinical guidelines suggest that an independent diagnosis of gen- der dysphoria be made by a mental health professional to ensure that a patient’s behaviors leading to the diagnosis are not influenced by mental health comorbidities.10 A cor- roborating diagnosis by a mental health expert can miti- gate misdiagnosis and help identify related mental health concerns that should be addressed as part of any treatment plan.

Data of Children and Adolescents Treated for Gender Dysphoria

For an area of clinical treatment that carries such sig-nificant long-term effects for pediatric patients, gen- der dysphoria has been subject to relatively little academic research. Possibilities for research are inherently limited by ethical restrictions on interventional research and by relatively low populations for cohort studies. After a case study was published in 1998 of a sixteen-year-old patient with gender dysphoria at the Amsterdam Clinic in the Netherlands,11 Peggy T. Cohen-Kettenis and Henriette A. Delemarre-van de Waal reported in seminal publications the results of cohort studies—which simply observe a spe- cific population over time—of children and adolescents with gender dysphoria who were treated at their clinic.12 The first study concluded that seventy patients, none of whom discontinued the hormone therapy, reported that the pubertal suppression improved their psychological functioning.13 A follow-up study by the same researchers found that the adolescents who underwent GnRH re- ported improved behavioral, emotional, and psychological functioning.14 In 2012, Norman Spack and others at the Boston Children’s Hospital Gender Management Service clinic reported the first cohort study in the United States, observing ninety-seven children and adolescents con- secutively undergoing treatment for gender dysphoria at the clinic.15 Of the cohort, which had an average age of 14.8 years, fifty-six patients received a medical interven- tion within the first week of presentation, with thirty-nine receiving cross-sex hormone therapy, whereas eleven were treated with GnRH.16 Notably, forty-three patients pre- sented with a significant psychiatric history.17 While these studies are an important starting point and generally high- light improvements in psychological function and a lack of reported adverse events, more detailed research in larger populations with greater follow-up is essential.

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Ethical Analysis

The ethical analysis in existing academic medical lit-erature of hormone treatment of minors with gender dysphoria has largely been relegated to passing assertions about risks and subsequent justifications. While this ap- proach does not imply thoughtlessness, it often indicates a lack of thoroughness because of inadequate analytic struc- ture. The field of bioethics is historically dominated by discourse about best ethical theories by which to analyze a given problem, but few would disagree that a straightfor- ward and oft-applied framework using the widely adopted principles of biomedical ethics18 is a pragmatic entry point into an ethical discussion of pediatric gender dysphoria treatment decisions. Thus, my analysis relies on accepted principles of bioethics including respect for autonomy, be- neficence, and nonmaleficence.19

Respect for Autonomy. Respect for autonomy tradition- ally refers to a general right to be free from interferences and limitations that prevent an ability to act freely in accor- dance with one’s wishes, with certain important caveats and restrictions. One legally imposed restriction to the right to autonomy is being below the age of minority. This is not a wholesale restriction, however, as pediatricians regularly try to consider a minor patient’s assent, with the weight of the patient’s contribution dependent upon the individual patient’s capacity to make rational, informed decisions.20 Despite a minor’s inability to provide legal informed con- sent for a medical procedure (with certain important ex- ceptions), the ethical principle of respect for autonomy cannot be dismissed in this analysis. In fact, the lack of legal authority may actually enhance a nuanced consider- ation of the autonomy of a child with gender dysphoria. Respect for autonomy is the strongest factor supporting progressive hormone treatments, including cross-sex hor- mone therapy, as the practice is justified through a desire to respect a child’s expressed gender ideation by helping align it with his or her outward sexual manifestation. Additional weight should be given to the respect for a child’s auton- omy to elect this treatment because of the importance of acting during adolescence to achieve optimum results in adulthood. In other words, respect for a child’s autonomy should be emphasized with respect to his or her desire to undergo hormone therapy because the same results will not occur if the patient is left to make the same decision at age eighteen. Additionally, it can be argued that the great-

est step towards respecting a child’s autonomy is expanded access to and education regarding various treatment plans for persons with gender dysphoria to allow patients in all geographic locations and of all socioeconomic positions to gain a full understanding of options and to advocate for their preferred treatment.

Nonmaleficence. Nonmaleficence—which reflects the medical maxim of “first, do no harm”—imposes an obliga- tion to not inflict harm on others. This principle offers the strongest ethical argument against cross-sex hormone treat- ment because the long-term effects of this therapy are not well known: only a single patient has been the subject of long-term follow-up.21 Additionally, cross-sex therapy has the known side effect of rendering most patients sterile. Puberty-suppressing hormones, by contrast, have largely been considered free of long-term harm; this assertion is supported by many generations of follow-up studies with the large population of individuals prescribed such drugs for precocious puberty.22 The ability to use puberty-block- ing hormones to prolong the decision to commence cross- sex hormones should not be undervalued, as this practice allows patients to mature and develop their power of judg- ment. Of course, “harm” as it relates to medical maleficence should go beyond the standard construction of physical harm and encapsulate a holistic approach that would con- sider emotional, social, and spiritual values and harms. For many adolescents, the eventual feeling of comfort within one’s body far outweighs the “harm” of losing the ability to procreate. However, there is a portion of the population of children undergoing cross-sex hormone therapy that will eventually decide not to live as that cross-gender. In these cases, the deprivation of fertility can be devastating and must be strongly considered. Still other persons with gender dysphoria will persist with their new gender, take comfort with the effects of the hormone treatment, yet still feel loss associated with infertility.

For supporters of greater access to cross-sex hormone therapies for adolescents, additional research in under- standing which factors can predict gender dysphoria persis- tence could significantly mitigate some of these concerns. A recent review article of relevant literature acknowledged “a surprising lack of knowledge on adolescent gender iden- tity development.”23 Additional insight into the complex interplay between psychosocial and biological factors could foster tools to better determine likelihood of persistence.24 Each advance in the field could substantially weaken argu-

For many adolescents, the eventual feeling of comfort within one’s body far outweighs the “harm” of losing the ability to procreate.

Others, however, may be devastated by the loss of fertility.

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ments about maleficence that are based on the concern that children could turn out to be desisters but will be sterile if they have undergone cross-hormone therapy.

Beneficence. The principle of beneficence refers to a moral obligation to act for the benefit of others—by ei- ther actions that do good or those that prevent harm. In the context of medical ethics, beneficence obligates phy- sicians to help their patients. Determining how a physi- cian should “do good” in cases of childhood or adolescent gender dysphoria is an unenviable task because of the vari- ability of persistence in such cases. Given the possibility of desistence, physicians must consider, in the name of beneficence, the not unlikely situation where cross-sex hormone therapy renders permanent harms in a desisting child. Prescribing cross-sex hormones is ethical only under the theory of beneficence when a physician believes that the facts of a certain patient—given age, maturity, length of dysphoric ideations—merit a decision that the child will more likely than not benefit from the treatment rather than regret the consequences at a later date. Physicians are thus also under an obligation to help children and adolescents properly weigh considerations. In this context, helping an adolescent appreciate the seriousness of infertility is an important ethical obligation and one complicated by the fact that the adolescent’s developing brain is generally more limited than the adult brain in its ability to weigh long- term consequences.

A common argument against the hormone therapy for gender dysphoric children is that the failure to provide such treatment will not cause harm. Hormone therapy can be initiated at the age of majority, and at that time gender reassignment surgery can be a viable, legal option. The principle of beneficence can be used to counter this argument because, while delaying hormone therapy may conform with the principle of nonmaleficence, the practice does not support beneficence if one assumes that a child’s desire to have his or her outward gender conform to his or her self-perceived gender is a valid good. A finding of a high prevalence of desistence detracts from the argument for beneficence. But, again, this argument may depend upon the findings of ongoing research on gender identity development and gender dysphoria persistence.

A Complex Issue, a Holistic Approach

A s this analysis demonstrates, hormone treatment for children and adolescents with gender dysphoria is eth- ically challenging: ethical principles point toward differing outcomes. A respect for a child’s autonomy combined with an emphasis on beneficence suggests that not only GnHR hormone treatment to suppress puberty but also cross-sex hormone therapy should be supported because such treat- ment would respect a patient’s growing right to be involved

in medical decision-making and because it offers the high- est likelihood for the preferred results of gender transition. But a counterargument is provided through an examina- tion of the principle of nonmaleficence, particularly in light of the likelihood that desisting minors would be left sterile. Regardless of individual conclusions, additional research into gender identity development and into the long-term safety of cross-sex hormone therapy is imperative. And all ethical analysis must acutely consider the age and cognitive development of the person with gender dysphoria. While long-term safety and reversibility of puberty-suppressing hormones make the first-stage treatment justifiable for many assenting children, the second-stage treatment of cross-sex hormones—with the long-term fertility implica- tions—are generally justifiable only with adolescents that can provide fully informed assent.

Lastly, one cannot complete the analysis of such a practice without acknowledging the realities of denying treatment options. Transgender youth have high rates of self-harm and suicide.25 This must dictate continued sup- port of proactive therapies and research for gender dys- phoric children and adolescents. We must concurrently push for increased understanding and acceptance of LGBT people through education and outreach, as well as in the nonmedical therapeutic realm through school- and com- munity-based support groups.

A holistic approach to ensuring the wellness of transgen- der youth is essential and must be supported by an ethical medical approach. With additional research and a con- tinued emphasis on the ethical components of hormone therapy, minors with gender dysphoria should be granted access to hormone therapies to allow for fulfilling, healthy, and secure lives.

1. Committee on Bioethics, “Informed Consent, Parental Permission, and Assent in Pediatric Practice,” Pediatrics 95 (1995): 314-17.

2. American Psychiatric Association, “Gender Dysphoria,” Diagnostic and Statistical Manual of Mental Disorders, 5th edition, doi:10.1176/appi.books.9780890425596.997927.

3. W. C. Hembree, “Guidelines for Pubertal Suspension and Gender Reassignment for Transgender Adolescents,” Child and Adolescent Psychiatric Clinics of North America 20 (2011): 725-32, at 725.

4. N. P. Spack, “Management of Transgenderism,” Journal of the American Medical Association 309 (2013): 478-84; Hembree, “Guidelines for Pubertal Suspension and Gender Reassignment for Transgender Adolescents,” at 725, 729.

5. N. P. Spack et al., “Children and Adolescents with Gender Identity Disorder Referred to a Pediatric Medical Center,” Pediatrics 129 (2012): 418-25.

6. S. F. Leibowitz and C. Telingator, “Assessing Gender Identity Concerns in Children and Adolescents: Evaluation, Treatments, and Outcomes,” Current Psychiatry Reports 14 (2012): 111-20, at 118.

7. Hembree, “Guidelines for Pubertal Suspension and Gender Reassignment for Transgender Adolescents,” 3132.

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8. Spack et al., “Children and Adolescents with Gender Identity Disorder Referred to a Pediatric Medical Center,” 419.

9. H. A. Delemarre-van de Waal and P. T. Cohen-Kettenis, “Clinical Management of Gender Identity Disorder in Adolescents: A Protocol on Psychological and Paediatric Endocrinology Aspects,” European Journal of Endocrinology 155 (2006): 131–37.

10. Hembree, “Guidelines for Pubertal Suspension and Gender Reassignment for Transgender Adolescents,” 3132.

11. P. T. Cohen-Kettenis and S. H. van Goozen, “Pubertal Delay as an Aid in Diagnosis and Treatment of a Transsexual Adolescent,” European Child and Adolescent Psychiatry 7 (1998): 246–48.

12. M. S. C. Wallien and P. T. Cohen-Kettenis, “Psycho-sexual Outcome of Gender Dysphoric Children,” Journal of the American Academy of Child and Adolescent Psychiatry 36 (2008): 1413-23; A. L. de Vries et al., “Puberty Suppression in Adolescents with Gender Identity Disorder: A Prospective Follow-up Study,” Journal of Sexual Medicine 8 (2011): 2276-83.

13. Wallien and Cohen-Kettenis, “Psycho-sexual Outcome of Gender Dysphoric Children,” 1421.

14. De Vries, “Puberty Suppression,” 2282. 15. Spack, “Children and Adolescents with Gender Identity

Disorder Referred to a Pediatric Medical Center,” 419. 16. Ibid., 421-22.

17. Ibid. 18. T. L. Beauchamp and J. F. Childress, Principles of Biomedical

Ethics, 6th edition (Oxford: Oxford University Press, 2008). 19. Ibid. 20. See D. Lambelet Coleman and P. M. Rosoff, “The Legal

Authority of Mature Minors to Consent to General Medical Treatment,” Pediatrics 131 (2013): 786-93.

21. P. T. Cohen-Kettenis et al., “Puberty Suppression in a Gender- Dysphoric Adolescent: A 22-Year Follow-Up,” Archives of Sexual Behavior 40 (2011): 843-47.

22. Hembree, “Guidelines for Pubertal Suspension and Gender Reassignment for Transgender Adolescents,” 725, 726.

23. Leibowitz and Telingator, “Assessing Gender Identity Concerns in Children and Adolescents: Evaluation, Treatments, and Outcomes,” 118.

24. See T. D. Steensma et al., “Desisting and Persisting Gender Dysphoria after Childhood: A Qualitative Follow-up Study,” Clinical Child Psychology and Psychiatry 16 (2011): 499-516.

25. R. T. Liu and B. Mustanski, “Suicidal Ideation and Self-Harm in Lesbian, Gay, Bisexual, and Transgender Youth,” American Journal of Preventive Medicine 42 (2012) 221-28.