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Steering into the Curves: Using Diagnosis to Support the Dignity and Autonomy of Trans Youth

Published online by Cambridge University Press:  13 March 2024

Elizabeth R. Boskey
Affiliation:
HARVARD MEDICAL SCHOOL, BOSTON, MA, USA.
Charlene Galarneau
Affiliation:
HARVARD MEDICAL SCHOOL, BOSTON, MA, USA.
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Abstract

This response to Kariyawasam and Rai affirms their critique of the pathologization of trans youth but forecasts a foreseeable negative outcome of their proposed elimination of diagnosis as a prerequisite to gender-affirming care (GAC) — the risk of removing GAC entirely from the medical sphere and compromising the wellbeing of those transgender individuals for whom GAC is deeply affirming. We suggest an ethical framework of GAC that expands past a focus on autonomy to incorporate a principle of respect for persons that affirms the dignity and diversity of trans youth — recognizing the need to facilitate both medical assistance and social change.

Type
Commentary
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
© The Author(s), 2024. Published by Cambridge University Press on behalf of American Society of Law, Medicine & Ethics

In their article, “Taking the long way around: towards a depathologized ethical framework of gender-affirming care for trans youth,”Reference Kariyawasam and Rai1 Kariyawasam and Rai appropriately problematize many of the ways that gender-affirming care (GAC) is currently enacted and advocated for in the US and other Western countries. We, as ethicists, broadly support both their desire to depathologize care and some of their suggestions for doing so. However, depathologization also has a potential for unintended consequences that work against the authors’ intent to transform clinical practice and to expand access to care. The recent bioethics literature is rich with relevant discussions.Reference Grimstad, Kremen, Boskey and Wenger2 Here we call attention to several contextual and ethical considerations that we believe are necessary for a “liberatory praxis of health care for trans youth.”

Pathology is deeply embedded in the biomedical model of health care, functioning in part as a prerequisite for treatment.Reference Mishler, Mishler, Amarasingham, Hauser, Osherson, Waxler and Liem3 This feature of modern medicine is not unique to GAC for trans youth but frames virtually all care within this cultural healing system, which positions as its aim the goal of “saving” or “protecting” persons from more advanced disease and death. The medicalization of common human experiences — pregnancy and childbirth, menopause, dying, short stature, and gender identity — entails pathologization and, frequently, saviorism. Reducing this medical reality to “a harmful ethical shortcut” oversimplifies current and much needed ethical and clinical discussions, especially as the authors acknowledge the elevated risks to mental health of being unable to access GAC.

In the current health care context in the US, and many other countries, it is pathology that enables financial access to treatment. Care that is deemed “medically necessary” is prioritized over care that is perceived as elective — prioritized both in terms of the timing of access and in the way that care is paid for. If there is no pathology, there is no necessity for treatment, thus health insurance becomes unlikely to provide coverage for this care. Removing a diagnosis — whether it be gender dysphoria, gender incongruity, or a diagnosis yet defined — from the paradigm of care makes access to GAC into a luxury rather than a fundamental necessity for the flourishing of some human lives.

Notably, even informed collaborative decision-making care paradigms for GAC involve a diagnosis. The difference is that the diagnosis comes from the medical provider rather than the behavioral health provider and is based in a combination of self-assessment by the person seeking GAC and analysis of the person’s ability to accurately self-assess by the provider. This does not eliminate the diagnosis, as is proposed by the authors, but instead positions the desire for GAC as reflecting a medical need rather than a psychological one. This specific intention, to reformulate the understanding of the desire for medical transition as reflective of an underlying medical condition, was behind the push to redefine the diagnosis of gender identity disorder to gender dysphoria and gender incongruence in official diagnostic classifications.Reference Drescher4

It is not the diagnosis of gender dysphoria, or gender diversity, that is the core ethical issue. It is the negativity associated with it. What would it be like to combine the ideals of a social model of gender justice with the model of GAC as preventative care that was recently proposed by Arjee Restar? It might involve working to reduce the gendered hostilities and strictures of the world while also recognizing that many individuals who experience gender dysphoria do better when they are supported by medical and other systems. Rather than eliminating gender dysphoria as a diagnosis that allows access to medical treatment, such a model could reduce some of the burdens of diagnosis while still allowing access to its benefits.

Informed consent paradigms are designed to operationalize the ethical principle of respect for autonomy, a respect usually reserved for adults. As such, youth typically are not permitted to give informed consent to medical care except in strictly limited circumstances, which vary by jurisdiction and interpretation. Conversations about the ability of youth to provide informed consent in various circumstances are important and reflect evolving beliefs about the roles and responsibilities of parents and society in the support and protection of children and the ways in which those responsibilities may be culturally and context dependent.

Creating a truly depathologized ethical framework for GAC may be less about removing the diagnosis and more about reconceptualizing it. If the only “pathology” that needs to be addressed is when a person is living in a body whose gendered traits do not allow them to function fully in the world — those discordances are what need to be addressed rather than their underlying gender. In this framework, though discomfort/distress is embedded in persons not society and thus persons not society are “treated,” there is also an implicit recognition that improving society might lessen an individual’s need for care.

Extending ethical discourse about GAC would benefit from an exploration of the principle of respect for persons. Fundamental to the principle of respect for autonomy is an often implied and unexamined recognition of the inherent and equal moral worth of each person, sometimes referred to as human dignity. The principle of respect for persons offers an explicit and capascious appreciation of the whole person beyond simply autonomy, as well as of the diversity of persons, and thus may offer solid justifications for genuinely collaborative decision-making regarding GAC for youth and adults. This would also require, and support, a broader social acknowledgement that being transgender is not a deficit state and is, instead, a facet of diversity to be appreciated and supported.

It is in this diversity-affirming context that the social model of disability becomes most salient to transgender and gender expansive people. The social model of disability appropriately positions accessibility as a problem created by the world and not a deficit experienced by the disabled person. It argues that society should do what it can to make spaces, technology, and all aspects of life available to everyone. The correlary for gender diversity would seem to be working towards removing gendered assumptions from everyday experiences. However, while that would certainly be beneficial, it would not necessarily eliminate many individuals’ need for GAC — even if it could reduce the acuity of discomfort they experience. They would still, therefore, retain a need for a diagnosis, just as individuals with physical and mental disabilities require a diagnosis to access supportive medical care and assistive devices.Reference Schaaff5

It is not the diagnosis of gender dysphoria, or gender diversity, that is the core ethical issue. It is the negativity associated with it. What would it be like to combine the ideals of a social model of gender justice with the model of GAC as preventative care that was recently proposed by Arjee Restar?Reference Restar6 It might involve working to reduce the gendered hostilities and strictures of the world while also recognizing that many individuals who experience gender dysphoria do better when they are supported by medical and other systems. Rather than eliminating gender dysphoria as a diagnosis that allows access to medical treatment, such a model could reduce some of the burdens of diagnosis while still allowing access to its benefits.Reference Kapp, Gillespie-Lynch, Sherman and Hutman7

Note

The authors have no conflicts to disclose.

References

Kariyawasam, N. and Rai, N., “Taking the Long Way Around: Towards a Depathologized Ethical Framework of Gender-Affirming Care for Trans Youth,” Journal of Law, Medicine & Ethics 51, no. 4 (2023).CrossRefGoogle Scholar
Grimstad, F., Kremen, J., Boskey, E. R., and Wenger, H., “How Should Clinicians Navigate Decision Making About Genital Reconstructive Surgeries Among Intersex and Transgender Populations?AMA Journal of Ethics 25, no. 6 (2023): E437445; F. Ashley, “Youth Should Decide: The Principle of Subsidiarity in Paediatric Transgender Healthcare,” Journal of Medical Ethics 49, no. 2 (2023): 110–114; A. D. Garcia and X. Lopez, “How Cisgender Clinicians Can Help Prevent Harm During Encounters With Transgender Patients,” AMA Journal of Ethics 24, no. 8 (2022): E753-761; F. Ashley, C. M. St. Amand, and G. N. Rider, “The Continuum of Informed Consent Models in Transgender Health,” Family Practice 38, no. 4 (2021): 543-544; H. Mabel, G. Morley, V. K. Jensen, K. R. Sankary, M. Wimbiscus, J. Cartaya, and E. S. Rome, “Clinician and Ethicist Perspectives: Understanding Moral Distress in Gender-Affirming Care for Pediatric Patients,” The Journal of Pediatrics 240 (2021): 265-271.Google ScholarPubMed
Mishler, E. G., “Viewpoint: Critical Perspectives on the Biomedical Model” in Social Contexts of Health, Illness, and Patient Care , ed. Mishler, E. G., Amarasingham, L. R., Hauser, S. T., Osherson, S. D., Waxler, N. E., and Liem, R. (New York: Cambridge University Press, 1981): 123.Google Scholar
Drescher, J., “Queer Diagnoses Revisited: The Past and Future of Homosexuality and Gender Diagnoses in DSM and ICD,” International Review of Psychiatry 27, no. 5 (2015): 386395.CrossRefGoogle ScholarPubMed
People with disabilities often must spend substantial time and resources to attain the diagnoses they need to access support, not to mention to have those diagnoses recognized by the governmental systems that regulate a variety of benefits. This represents a significant burden that may fall disproportionately on those with “invisible diagnoses,” a category under which gender dysphoria might be considered to fall when arguments rooted in disability and civil rights laws are used to support GAC access. See Schaaff, B., “Using Federal Nondiscrimiantion Laws to Avoid ERISA: Securing Protection from Transgender Discrimination in Employee Health Benefit Plans,” Duke Journal of Gender Law and Policy 26, no 1 (2018): 4564.Google Scholar
Restar, A. J., “Gender-Affirming Care is Preventative Care,” The Lancet Regional Health — Americas 24 (2023): 100544.CrossRefGoogle ScholarPubMed
This could reflect a similar movement towards higher-functioning adults embracing diagnoses of attention deficit disorder and autism in order to both destigmatize those diagnoses and access appropriate accommodations – a movement that highlights a tension between the concept of autism as a form of diversity vs disorder. See Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., and Hutman, T., “Deficit, Difference, or Both? Autism and Neurodiversity: Deficit or Difference Interpreting Diverse Developmental Paths,” Developmental Psychology 49, no. 1 (2013): 5971; J. A. Hughes, “Does the Heterogeneity of Autism Undermine the Neurodiversity Paradigm?” Bioethics 35, no. 1 (2021): 47-60.Google ScholarPubMed