GATE Submission to WHO on Intersex Issues in the process of ICD reform

The International Classification of Diseases (ICD) is the standard diagnostic tool produced by the World Health Organization (WHO). A new version, called ICD-11, is expected to be completed in 2018.

In the context of our work on depathologization and human rights, GATE made a comprehensive technical submission to WHO on intersex issues in the ICD process. The submission was prepared in consultation with intersex advocates and experts from every continent. GATE remains responsible for the proposals made, acknowledging that respondents shared varying personal perspectives. The submission builds upon an earlier joint submission to the World Health Organization, made in November 2014.

Our concerns with the proposed ICD-11 draft include the unnecessary pathologisation of often benign physical variations, including through new terminology, and proposed unlawful medical interventions.

In particular, medical procedures are defined for the following diagnostic codes that are unlawful in at least one jurisdiction, of international concern to community organisations, and of international concern to human rights institutions:

  • 5-alpha-reductase 2 deficiency
  • 17-beta-hydroxysteroid dehydrogenase 3 deficiency
  • congenital adrenal hyperplasia

Those interventions have been criticised for their weak evidence, and irreversible physical and mental health consequences, in the WHO report on Sexual health, human rights and the law; therefore, it is contradictory and inappropriate for the proposed ICD revision to require them. They should be removed.

The proposed ICD-11 draft introduces the category of “disorders of sex development” as the diagnostic umbrella term for intersex variations. We propose to replace it with “congenital variations of sex characteristics”, and other additional systemic changes.

Your involvement is key to the international effort to depathologize intersex variations in ICD-11 and beyond, to make WHO fully accountable for the disastrous consequences of the ongoing pathologization of intersex variations in the ICD and to change the landscape of intersex human rights. Contact us today at icd@transactivists.org.

GATE ICD intersex submission (PDF format)