Bioethics Forum Essay

The Cass Review of gender identity services for children and young people, a recent report in the U.K., has spurred many headlines and much debate, most of which tout the finding of weak evidence for gender-affirming care for children and teenagers. Advocates of such care reject the report as anti-trans, while critics hail it for finally outing such care as pseudoscience. However, much of the noise around gender-affirming care in pediatrics, and this report, is misleading and takes away from the substantive improvements needed to provide the best care for transgender youth, something noted in the reports thoughtful foreword.

The Cass report was commissioned by the U.K.s National Health Service to make recommendations on improving care for children and young people who are questioning their gender identity or experiencing gender dysphoria. The report made eight recommendations on treatment, two of them on medications: puberty blockers and hormones.

While gender-affirming care is not reducible to medications alone, they are the treatments most often singled out by critics. The report determined that the scientific evidence for puberty-blocking medications in youths needs improvement, expressing concern about the potential risks and questioning the benefits for most children. The report didnt say that puberty blockers should not be prescribed to children, but it concluded that they should only be prescribed as part of a clinical trial. The report said that masculinizing or feminizing hormones could be given to people starting at age 16, but it advised extreme caution.

I cant think of any other situation where we give life-altering treatments and dont have enough understanding about whats happening to those young people in adulthood, said Hillary Cass, the pediatrician who produced the report. This statement, and concerns raised in the report about lack of evidence, are misleading for two reasons.

First of all, most medications used in pediatrics lack long-term and pediatric-specific data, and so medicines for gender-affirming care are not exceptional in that regard. In fact, up to 38% of drugs used in pediatrics and 90% of those used for newborns are prescribed off-label and have had few studies performed on children. These off-label medications include antipsychotics, endocrine medications, and even some antibiotics.

Second, there is safety data on puberty blockers. They have been given to children for decades to treat conditions such as precocious puberty, in some cases for the indication of social distress related to early puberty. These drugs have been shown to be safe in prospective observational studies.

In looking for evidence Cass placed the greatest value on randomized controlled trials. In these studies, participants are randomly assigned to receive either an experimental treatment or a control treatment and then their outcomes are compared. RCTs are great when they are feasible and ethical. But they are not feasible for studying puberty blockers because the participants and researchers would know which group the participants were in when they either did or did not show pubertal changes. This knowledge could interfere with an unbiased scientific comparison of the outcomes.

Without RCTs on puberty blockers, Cass had to review other studies whose evidence she considered weak. But this does not mean a lack of benefit. Rather, it should prompt shared decision-making with clinicians, patients, and families discussing the proportionality of benefits and burdens.

Weighing the proportionality of benefit to burden from an intervention is a foundational calculus in ethical decision-making. It goes on every day in pediatrics without apparent controversy. Some arguments appeal to patient autonomythe rights and interests of the patient who wants a treatmentrather than to the treatments ability to reduce morbidity and mortality, as was discussed in an article in the current issue of the Hastings Center Report. Other arguments focus on what is in the best interest of the patient. But for many decisions in adolescent health, it is not a matter of choosing either/or but rather considering both the patients autonomy and best interest that is necessary. For example, life-and-death decisions involving serious illness in adolescents require respecting the adolescents autonomy and considering the medical teams and the parents assessments of the benefits and burdens, or beneficence and nonmaleficence, of those decisions.

Interestingly, in contrast to gender-affirming care, there seems to be relatively little public controversy over cosmetic surgery for teenagers. And yet in 2022 there were 23,527 cosmetic surgeries performed on teenagers in the U.S., including breast augmentation for both biologic cis males and females. These surgeries require the same decision-making process as other interventions for teenagers. But as far as we can tell, they receive less public scrutiny than gender-affirming care. There are no court cases against these surgeries or attempts by state governments to ban them despite legitimate questions about their benefits and burdens to adolescents and the fact that, unlike most gender-affirming interventions in youth, cosmetic surgeries are not reversible.

Issues around evidence in pediatrics are abundant, but gender-affirming care receives a disproportionate amount of public criticism. Resources are lacking for research that would provide more evidence on the safety and effectiveness of care in pediatrics, including gender-affirming care. The Cass report recognizes this problem and provides important guidance. The report does not support bans and criminalization of gender-affirming care, which has been the response by more than 20 U.S. states and is under review by the Supreme Court. On the contrary it calls for investment in and expansion of gender-affirming care: improved access, workforce education, and collaborative and coordinated services, along with infrastructure to ensure improved data collection and ongoing quality improvement to strengthen the evidence for various treatment options. While we disagree with the Cass reports assessment of the evidence for puberty blockers and hormone treatments, its overall recommendations should be heeded by critics of gender-affirming care if the goal of their critiques is truly to provide improved and beneficial care for young people.

Ian D. Wolfe, PhD, MA, RN, HEC-C, is director of ethics at Childrens Minnesota and affiliate faculty in the University of Minnesotas Center for Bioethics.

Justin M Penny, DO, MA, HEC-C, is an assistant professor in the Department of Family Medicine and Community Health at the University of Minnesota and a clinical ethics assistant professor in the Center for Bioethics.

Read this article:

Finding the Signal in the Noise on Pediatric Gender-Affirming Care - The Hastings Center