Jack Drescher (© privat)
Jack Drescher (© privat)
What is the ICD and what is it needed for?
The International Statistical Classification of Diseases and Related Health Problems, usually called by the short-form name International Classification of Diseases (ICD), is the World Health Organization’s (WHO) international standard diagnostic tool for epidemiology, health management and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems, providing a picture of the general health situation of countries and populations. All Member States of the United Nations use the ICD which has been translated into 43 languages.
How has transgender identity been categorized in the WHO framework for diagnoses ICD so far?
The placement of diagnostic categories related to gender identity has shifted over time within the ICD classification system. ICD-6, approved in 1948, was the first version of the ICD published by WHO. It makes no reference to the diagnosis of transsexualism; nor does it appear in ICD-7. ICD-8 reflected changing clinical and theoretical views and introduced a diagnosis of transvestitism for the first time. Definitions of diagnostic categories were not provided in ICD-8, so the intended meaning of transvestitism is not entirely clear. Historically, however, the alternate spelling of transvestism was often used as an early synonym for what later came to be known as transsexualism. ICD-9 included a newly added diagnosis of trans-sexualism.
ICD-10 saw a significant reorganization of the classification system and some new gender identity diagnoses that reflected a growing body of clinical experience and research. Under disorders of adult behaviour and personality appeared a new category of gender identity disorders which includes five diagnoses: transsexualism, dual-role transvestism, gender identity disorder of childhood, other gender identity disorders, and gender identity disorder, unspecified.
How does the Working Group on the Classification of Sexual Disorders and Sexual Health that you are a member of suggest transgender identity should be classified in the new ICD?
The diagnostic classification of disorders related to transgender identity is an area long characterized by lack of knowledge, misconceptions and controversy. This has been reflected in the constant shifts in placement and renaming of these diagnoses in various editions of the ICD and the Diagnostic and Statistical Manual of Mental Disorder (DMS) (Editor’s Note: The DSM is the classification and diagnostic tool of the American Psychiatric Association (APA)). During the two decades since the publication of ICD-10, there have been gains in the clinical, scientific, social, and human rights understanding of transgender people. Since that time, transgender people have become more publicly visible; there are accepted international standards of treatment and care; and there has been an increase in efforts to protect their rights and reduce discrimination.
The ICD-11 Working Group on the Classification of Sexual Disorders and Sexual Health believes it is now appropriate to abandon the psychopathological model of transgender people based on 1940s conceptualizations of sexual deviance and to move towards a model that is more reflective of current scientific evidence and best practices; more responsive to the needs, experience, and human rights of this vulnerable population; and more supportive of the provision of accessible and high-quality health care services.
Therefore the Working Group has made two significant recommendations. The first is changing the names of the gender diagnoses. Transsexualism will be renamed Gender Incongruence of Adolescents and Adults and Gender Identity Disorder of Childhood will become Gender Incongruence of Children.
The second major recommendation is moving these diagnostic categories out of the Mental and Behavioural Disorders Section of the ICD into a new chapter called Conditions Related to Sexual Health.
Why is it important to change the current name and classification?
A combined stigmatization of being transgender and of having a mental disorder diagnosis creates a doubly burdensome situation for this population that contributes adversely to their health as well as to their enjoyment and attainment of human rights. For example, transgender people are much more likely to be denied care in general medical or community-based settings given the perception that they must be treated by psychiatric specialists, even for conditions that have nothing to do with being transgender. Difficulty in obtaining transition related services has also led some transgender people, out of desperation, to expose themselves to significant harm, including HIV infection, through the use of black or gray market hormones, sometimes injected, and thus creating a larger public health problem.
In addition, there are unique circumstances in the case of this particular diagnosis that relate to the ability of a person to be viewed as competent to make certain legal decisions. Government agencies in many countries have demonstrated prejudice in extending recognition of change in legal gender status on identity documents such as passports and drivers’ licenses. Courts may often rule against transgender people in child custody decisions when their mental disorder diagnosis is used by an ex-spouse to call their competence as parents into question. These are some of the factors that contribute to persuasive human rights and WHO mission-related arguments for moving the category out of the mental disorders section. Given that WHO’s mission is the attainment by all peoples of the highest possible level of health, WHO must consider whether a policy that appears to be having adverse health or human rights consequences for an identifiable group is inconsistent with its mission.
The relationship between psychiatric diagnosis, stigma and human rights is sharply illustrated by the history of the removal of homosexuality per se from medical classification systems. In the aftermath of the decision, with psychiatry no longer officially participating in stigmatization, a historically unprecedented social acceptance of gay men and women gradually ensued across much of the world. In many countries and cultures, although not all, there was a change in cultural beliefs about homosexuality that culminated in the contemporary international quest of gay men and lesbians for human rights, including freedom from discrimination and marriage equality.
Why has the Working Group recommended retaining gender incongruence diagnoses in the new ICD?
The issue of retaining a stigmatizing diagnosis was weighed against the consequences of removing the diagnosis leading to a loss of access to needed health care. While retaining the diagnoses, even with modification, can undoubtedly contribute to perpetuating stigma, such an outcome would constitute a lesser harm to anatomically dysphoric members of the trans community than the denial of access to medical and surgical care likely to ensue following removal from the ICD.
What kind of response have the recommendations of your Working Group caused among scientists and transgender people?
Although there has not been a formal survey done, there appears to be overwhelming support for moving the diagnoses out of the mental disorders section of ICD. There has been controversy regarding retaining the childhood diagnosis as some trans advocacy groups believe its presence, even outside the mental disorders section, is stigmatizing of children.
However, the working group disagreed. First, we do not believe that significant stigma would be attached to having a medical diagnosis. Second, for those who disagree can reasonably assert that Gender Incongruence of Childhood should be considered no different than the precedent set by the ICD diagnoses of Normal Spontaneous Delivery and Normal Menopause. The latter diagnoses were long ago “medicalized” in order to provide access to care despite their being natural life events that are not "pathological" in any strict sense.
