We welcome publication of the peer-reviewed article, “Intersex variations, human rights and the International Classification of Diseases”, by GATE senior advisor Morgan Carpenter, in Harvard’s Health and Human Rights Journal. This paper was supported by GATE’s initiative on reform of the International Classification of Diseases.
Despite contrary language in other WHO publications, and despite the depathologization of other sexual and gender minorities, the ICD-11 repathologizes intersex variations and facilitates violations of the human rights of people born with variations of sex characteristics:
“The ICD-11 introduces additional and pathologizing normative language to describe [intersex variations] as “disorders of sex development.” Current materials in the ICD-11 Foundation also specify, or are associated with, unnecessary medical procedures that fail to meet human rights norms documented by the WHO itself and Treaty Monitoring Bodies. This includes codes that require genitoplasties and gonadectomies associated with gender assignment, where either masculinizing or feminizing surgery is specified depending upon technical and heteronormative expectations for surgical outcomes. Such interventions lack evidence. Human rights defenders and institutions regard these interventions as harmful practices and violations of rights to bodily integrity, non-discrimination, equality before the law, privacy, and freedom from torture, ill-treatment, and experimentation. WHO should modify ICD-11 codes by introducing neutral terminology and by ensuring that all relevant codes do not specify practices that violate human rights.”
In many different national and international contexts, we are aware of assurances of change to clinical practices, and a lack of evidence and data to support such assurances. In the paper, Morgan highlights a 2016 Australian legal case, Re: Carla, that exemplifies concerns with both intersex-related classifications in the ICD-11, and this unsubstantiated rhetoric of change:
“Clinicians have argued that the practices documented in Carla’s case and described in the ICD-11 no longer take place routinely, but such claims lack evidence, and so lack merit.”
To date, policy-makers appear far too willing to accept assurances of changed practices, with little attention to ensuring accountability, transparency and evidence.
GATE calls on WHO to amend the ICD-11 to break the link between classifications of diseases and violations of human rights. In line with statements by human rights institutions we call on WHO to combat the root causes of human rights violations. We call on WHO to consult with intersex-led organisations to ensure enjoyment by intersex people of the highest attainable standards of health and other human rights. We call on allies and donors to actively promote and support our demands.
We ask policy-makers and allies to join our call for evidence of change to clinical practices, and ensure accountability and transparency.