20th World Congress for Sexual Health
Glasgow, Scotland, UK
13 June 2011
(Trans)Gender Identity in the ICD-11:
Finding the Right Balance
Dr. Geoffrey M. Reed
Department of Mental Health and Substance Abuse
World Health Organization
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
Specialized agency of UN established
in 1948

Mission of WHO is the attainment by
all peoples of the highest possible
level of health

From WHO's inception, health has
explicitly included mental health

Health classifications are core
constitutional responsibility of
WHO, ratified by treaty with 193
member countries
Purposes of ICD
 WHO member countries agree to use ICD as standard
for health information and reporting
Basis for:
 Assessment and monitoring of mortality, morbidity,
injuries, external causes, other health parameters
 Tracking epidemics and disease burden
 Identifying appropriate targets of health care resources
 Accountability
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ICD-10 Revision
 Mandated by World Health Assembly (Health Ministers of
all WHO Member Countries)
 ICD-10 completed in 1990; longest time without revision in
history of ICD
 Covers all areas of diseases, disorders, and injuries, and
health conditions; diagnostic standard for medicine
 ICD revision process involves many international
professional associations, scientific societies, diseasebased groups; and advocacy organizations working on
behalf of ICD and WHO
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MSD Responsibilities
 WHO Department of Mental Health and Substance Abuse
responsible for revision of:
– Mental and Behavioural Disorders
– Diseases of the Nervous System
 Assisted by International Advisory Group in each area
 Participate in Revision Steering Group for overall ICD revision
 Technical work on Mental and Behavioural Disorders to be
completed by end of 2013
 Approval of ICD-11 by World Health Assembly expected:
2014 – 2015
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Mental and Behavioural Disorders – I
1. Neurodevelopmental
disorders
2. Schizophrenia spectrum
and other primary
psychotic disorders
disorders
6. Obsessive-compulsive
and related disorders
7. Disorders associated with
severe stress or adversity
3. Bipolar and related
disorders
8. Dissociative disorders
4. Depressive disorders
9. Somatic distress disorders
5. Anxiety and fear-related
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Mental and Behavioural Disorders – II
10. Feeding and eating
disorders
addictive disorders
16. Neurocognitive disorders
11. Elimination disorders
17. Personality disorders
12. Sleep disorders
18. Paraphilias
13. Sexual dysfunctions
19. Other mental and
14. Disruptive behaviour and
behavioural disorders
antisocial disorders
15. Disorders due to
substance use and other
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WHO ICD Constituencies
 Member Countries
– Required to report health statistics to WHO according to ICD
– Use ICD categories for eligibility and payment of health
care, social, and disability benefits and services
 Health Professionals
– Multiple mental health professions
– Most mental disorders treated in primary care, must be useful
for front-line service providers
 Service Users/Consumers
– ‘Nothing about us without us!’
– Opportunities for substantive and continuing input
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ICD Revision Orienting Principles
1.
Highest goal is to help WHO member countries reduce
disease burden of mental and behavioural disorders:
relevance of ICD to public health
2.
Focus on clinical utility: facilitate identification and treatment
by global front-line health care providers, especially in low
and middle-income countries
3.
Multidisciplinary, global, multilingual development
4.
Must be undertaken in collaboration with stakeholders
5.
Integrity of system depends on independence from
pharmaceutical and other commercial influence
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The Treatment Gap

Mental disorders contribute heavily to global disability and
disease burden (WHO, 2008)

Serious mental disorders receiving no treatment during
past year:
– Developed countries- 35.5 to 50.3%
– Developing countries- 76.3 to 85.4%
(World Mental Health Survey Group, JAMA, 2004)

‘Treatment gap’ is 32 to 78%, depending on disorder
(Kohn, Saxena, Levav, Saraceno, Bull of WHO, 2004)
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Lack of treatment leads to human rights abuses
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Scarcity of Human Resources
(N=157 to 183 countries)
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Importance of Primary Care
 Worldwide, psychiatrists provide only a tiny proportion of
mental health services
 When people with mental disorders do receive treatment,
they are far more likely to receive it in primary care settings
 Mental health specialists alone cannot address treatment
gap
 A primary focus of the ICD revision is to provide a version
of ICD-11 mental disorders classifications that is
feasible and clinically useful for primary care settings
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Clinical Utility as Organizing Principle
 The ideal: scientific validity and clinical utility
 At present, neuroscience and genetics evidence
does not support major changes for individual
conditions or provide definitive support for
specific structure
 WHO views current revision as major opportunity
to improve utility of the system
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Clinical Utility: WHO Working Model
Clinical utility of concept relates to:
 Value in communicating (e.g., among practitioners,
patients, families, administrators)
 Implementation in clinical practice: Goodness of fit
(accuracy), ease of use, time required (feasbility)
 Usefulness in selecting interventions and for clinical
management decisions
 Improvement in clinical outcomes at individual level
and health status at population level
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First Question
Should we have categories to represent transgender
phenomena as a part of a classification of health
conditions?
1. Tracking epidemics/threats to public health/disease
burden
2. To identify vulnerable/at risk populations
3. To define obligations of WHO Member States to provide
free or subsidized health care to their populations
4. To facilitate access to appropriate health care services
5. As a basis for guidelines for care and standards of
practice
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First Question
Should we have categories to represent transgender
phenomena as a part of a classification of health
conditions?
1. Tracking epidemics/threats to public health/disease
burden
✔ 2.
✔ 3.
✔ 4.
✔ 5.
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To identify vulnerable/at risk populations
To define obligations of WHO Member States to provide
free or subsidized health care to their populations
To facilitate access to appropriate health care services
As a basis for guidelines for care and standards of
practice
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Second Question
How should category or categories related to transgender
phenomena be conceptualized?
 Transsexualism? (ICD-10 F64)
A desire to live and be accepted as a member of the opposite sex,
usually accompanied by a sense of discomfort with, or
inappropriateness of, one's anatomic sex and a wish to have
hormonal treatment and surgery to make one's body as congruent
as possible with the preferred sex.
 Gender identity disorder?
 Gender incongruence?
 Gender dysphoria?
 Effects of social oppression related to transgender identity?
 Same for adults and children?
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Third Question
Where should categories related to transgender phenomena
be placed in the classification?
 Mental and behavioural disorders?
 Factors influencing health status and contact with health
services?
 Signs and symptoms?
 Reproductive health?
 Sexual health?
 Other?
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Working Group
 The WHO Department of Mental Health and Substance Abuse and
the WHO Department of Reproductive Health and Research will
appoint a Working Group on Sexual Disorders and Sexual Health
as part of the ICD revision process
 Working Group will appoint jointly to the ICD Advisory Group for
Mental and Behavioural Disorders and the Advisory Group for
Reproductive Health
 Will also provide liaison to the Pediatric Advisory Group and other
classification areas as appropriate
 Charge is to review evidence, submitted proposals, and develop draft
of ICD-11 classification for consideration by Advisory Groups, public
comment, and field testing
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Revision Proposals
 Can be made by anyone
 Proposal form and guide available in English,
Spanish, and French
 Proposals may be submitted in these languages
 Submit to [email protected]
 Will be referred to appropriate Working Group
 Should be received no later than December 31,
2011
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Revision Proposals
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Revision Proposals
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Revision Proposals
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Revision Proposals
To reflect changes in the social understanding or view of diseases
or disorders (e.g., removal of stigmatizing terms): This option
applies in situations in which terms used in the ICD-10 are
stigmatizing and may be considered demeaning by service users.
Examples include the terms ‘mental retardation’ and ‘dementia’. It
also may apply in situations where behavior that was previously
considered inherently disordered is now more broadly considered to
be normal variation in response and behavior, such as may apply to
some of the categories included under Disorders of sexual
preference (F65). It may also apply to proposals from various
consumer groups to move particular conditions out of the chapter
on Mental and Behavioural Disorders to another part of the ICD.
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Revision Proposals
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Revision Proposals
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Required Content for
Each ICD-11 Category
IX.
X.
II. Relationship to ICD-10
XI.
III. Primary ‘Parent’ Category
XII.
IV. Secondary ‘Parent’
XIII.
Category
XIV.
V. ‘Children’ or Constituent XV.
Categories
XVI.
VI. Synonyms
XVII.
VII. Definition
XVIII.
VIII. Diagnostic Guidelines
XIX.
I.
Category Name
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Functional Properties
Temporal Qualifiers
Severity Qualifiers
Differential Diagnosis
Differentiation from Normality
Developmental Presentations
Course Features
Associated Features and
Comorbidities
Culture-Related Features
Gender-Related Features
Assessment Issues
Conclusions – I
 Major advances in scientific understanding and changes in
social attitudes over the past two decades regarding
transgender issues
 Strong grass-roots and human rights movement
 Suggestions that ICD-10 has been misused
 WHO is not invested in maintaining a conceptualization of
transgender-linked health conditions as mental disorders
 Most proposed alternative conceptualizations are still
pathological, and none is entirely satisfactory
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Conclusions – II
We need a serious alternative proposal that:
 facilitates appropriate access to non-coerced health care
 Helps to protect human rights
 Is scientifically defensible and grounded in evidence,
broadly defined
 Has a reasonable chance of being broadly acceptable to
transgender people, to health care professionals, to
researchers, and to Member States
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WHO: An International Language Revision of ICD