Gender Diagnoses and ICD-11

Although many psychiatrists are still just beginning to familiarize themselves with the 10th Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10), they may be surprised to learn it was approved by the World Health Organization (WHO) in 1990. ICD-10 predates DSM-IV (1994) and DSM-IV-TR (2000). Not to worry. A new ICD-11 is scheduled for publication in 2018.

Having served on the DSM-5 Workgroup on Sexual and Gender Identity Disorders and the subcommittee revising DSM-IV’s gender identity disorder diagnoses to DSM-5’s gender dysphoria, I was invited to serve on WHO’s Working Group on Sexual Disorders and Sexual Health, which is revising ICD-11’s gender diagnoses.

Gender diagnoses are relative newcomers to modern psychiatric nosology. ICD-6 (1948), the first to include a classification of mental disorders, had no gender diagnoses. Nor did APA’s DSM-I (1952). “Trans-sexualism” (sic) only first appeared in ICD-9 (1975). In 1980, “transsexualism” and “gender identity disorder of childhood” appeared in DSM-III. Since then, placement of gender diagnoses has shifted over time within both ICD and DSM.

During the revision process for DSM-5, LGBT advocacy groups lobbied for removing gender diagnoses from the manual, as homosexuality was removed in 1973. The DSM-5 work group weighed the issue of stigma associated with retaining gender diagnoses against the potential loss of access to care. Those seeking transition and other support services need a billable diagnosis code. Although some suggested using V-codes, these are rarely reimbursable and did not seem a viable way to maintain access to care. The work group recommended retention. In addition to the name change, diagnostic criteria were made more stringent to avoid diagnosing gender variance per se as a mental disorder.

In contrast to DSM-5, the ICD-11 working group operated under a different set of parameters. WHO, a United Nations agency, has a human rights mission, and there is substantial evidence that the stigma associated with the intersection of transgender status and mental disorders contributes to precarious legal status, human rights violations, and barriers to appropriate health care for this population.

Thus, the working group recommended (1) retaining gender diagnoses in ICD-11 to preserve access to care but (2) moving these categories out of the ICD-11 chapter “Mental and Behavioural Disorders.” The diagnoses, renamed “gender incongruence of childhood” (GIC) for prepubescent children and “gender incongruence of adolescence and adulthood,” will be included in a proposed new chapter called “Conditions Related to Sexual Health.”

Yet one ICD-11 controversy remains: whether GIC should be retained. The main argument against retention is that a medical diagnosis is potentially harmful to children. Although young children do not receive medical services for GIC, treatment often consists of specialized supportive mental health services as well as family and social (for example, school) interventions. The working group recommended retention with the rationale that doing so preserves access to care for a vulnerable and already stigmatized group.

Retaining a child diagnosis also alerts health professionals that a transgender identity in childhood does not develop seamlessly into an adult transgender identity. It is hoped that the inclusion of GIC in ICD-11 will provide better opportunities for much-needed education of health professionals; development of standards and pathways of care to help guide clinicians and family members, including adequate informed consent procedures; and future research efforts.

The ICD and DSM are expert consensus documents, and neither should be thought of as a “bible.” They are more like a user’s manual. As psychiatric diagnoses have changed over time, they presumably will change again based on new knowledge from research and clinical experience. ■