We, the undersigned intersex-led organisations and groups, welcome moves by the WHO that continue a trend to depathologise sexual and gender minorities in the International Classification of Diseases (ICD-11), expected to be approved at the World Health Assembly in May 2019. However, we express our deepest regret that the ICD-11 reverses this trend in relation to people born with variations of sex characteristics – intersex people. This will cause continuing harm to people born with variations of sex characteristics.

The ICD-11 introduces normative language to describe intersex variations as “disorders of sex development.” Some current materials in the ICD-11 Foundation are associated with unnecessary medical procedures that fail to meet human rights norms. Such procedures are outlined in codes that in some instances explicitly require genitoplasties or gonadectomies, associated with gender assignment, where either masculinising or feminising surgery is specified depending upon technical and heteronormative expectations for surgical outcomes. Such interventions are grounded in gender stereotypes.

When performed on individuals without their personal informed consent, human rights defenders and institutions have found these interventions to be harmful practices and violations of rights to bodily integrity, non-discrimination, equality before the law, privacy, and freedom from torture, ill-treatment, and experimentation. Such interventions have been documented by WHO in publications on Sexual Health, Human Rights and the Law, and Eliminating Forced, Coercive and Otherwise Involuntary Sterilization. They have also been documented by intersex human rights defenders, UN Treaty Monitoring Bodies and diverse human rights institutions.

Community consortia have made concrete proposals for reforms to these codes and nomenclature, but there is no evidence of acknowledgement or action to address these issues.

We call on WHO to:

1. Reform nomenclature and classifications to ensure that they do not facilitate human rights violations.

2. Publish a clear policy on intersex people’s health and rights, ensuring that treatment is fully compatible with human rights norms. This must eliminate procedures intended to modify the sex characteristics of persons born with variations of sex characteristics without their free, prior and informed consent, unless necessary to avoid serious, urgent and irreparable harm to the individuals concerned.

3. Establish clear guidelines on ending human rights violations in medical settings, including those affecting intersex people.

4. Introduce intersex issues into all relevant WHO documents, including those focused on sexual and reproductive health and rights, midwifery, childhood and adolescence, genitourinary health, genetics, sports, genital mutilation, and medical education.

5. Ensure equitable access to reparative treatments and assistance for ongoing health needs within actions to promote universal health coverage.

6. Organise and/or participate in an international meeting on intersex people’s health and human rights in partnership with civil society.