January 2016

South African ICD-11 field testing process of Gender Incongruence of Childhood (GIC):

Reflections and comments

Background:

As part of the process of revising the International Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10), five countries, including South Africa (the only African country), were identified as field testing sites for the proposed ICD-11 diagnostic categories for Gender Incongruence of Childhood (GIC) and Gender Incongruence of Adolescence and Adulthood (GIAA). The field trials were to be conducted under the auspices of the World Health Organisation (WHO). The recruitment and supervision of the South African Field Testing Coordinator was vested with the University of Cape Town (UCT)Department of Psychiatry.

To become familiar with aspects relevant to local transgender, the Coordinator consulted with key informants among the local transgender experts and transgender advocates. A protocol development meeting was then held over a 3-day period in August 2013. It included a process of drafting research protocols by an advisory panel and other clinicians and advocates. Further inputs and endorsement were then acquired from a broader audience of affected parties, including academics and clinicians from the legal and health fields as well as from civil society and representation of the affected community.

Expectations:

  • Guided by the original brief included in preliminary reading material and the introductory session, the understanding among the delegates at the outset was that the purpose of this forum was for WHO to obtain practical inputs about the field testing from a multidisciplinary group closely involved with transgender healthcare and advocacy and which included representatives from the affected community.
  • The delegates further understood that the proposals and protocols which were to emanate from this process would at least in part serve to inform the field testing process and content in the region and possibly further afield.
  • The delegates were informed that clinicians would also have the opportunity to fill out questionnaires on the various new proposed ICD-11 diagnoses which WHO would make available via its internet Global Clinical Network.

To address a concern among the delegates that by excluding non-clinicians, insufficient data would be captured, especially with regard to GIC, assurance was given that if local clinicians came up with a scientifically useful questionnaire for clinicians, non-clinicians and other affected groups on GIC, WHO would seriously consider allowing this questionnaire to be distributed along with its other internet-based studies.

(This information was considered particularly relevant in the evaluation of the utility of the highly contentious GIC which continues to attract heavy, unanimous criticism in the region. See the Cape Town Declaration: Gender Incongruence in Childhood.[1])

Subsequent developments:

The expert advisory group was informed two months after the meeting that there were insufficient WHO funds to implement any of the field-testing proposals. Sexual health services were considered too few and there would be difficulties with regard to datacollection. WHO, with assistance of the South African coordinator and supervisor, would develop the Internet-based questionnaire for clinicians.

Local clinicians who tested the first draft questionnaires on GIC and GIAA found it cumbersome and impractical. An offer from among these clinicians who had extensive experience in the field of transgender to review and otherwise assist with the revision of the questionnaire was declined.

The Child Psychiatrist worked with the head of the Child Psychiatry Department at UCT to produce a scientifically valid and useful proposal for studying GIC diagnosis amongst clinicians and non-clinicians. Despite making repeated attempts, they have to date not received feedback from the WHO on their proposal. There appear not to be plans for any non-clinician questionnaire at this time.

A GIAA utility study is to be conducted at two South African institutions. The protocols were developed in Mexico.

No GIC study will be done locally.

Comments:

  • There was a realistic expectation among many of the delegates that more attention would be given to inputs from the clinicians, civil society and the trans community regarding the process of evaluation of GIC and GIAA diagnoses in the local setting and that there should have been continued consultation.
  • Due to the far-reaching impact of the field-trial protocols it is very concerning that local clinicians were afforded no opportunity to contribute to the protocols and questionnaires, especially around the diagnostic category for children with local testing of GIC not seeming to be a priority.
  • The impression has been left that a substantial part of WHO’s engagement with the affected parties in this region was nominal only and that non-clinicians and affected communities in particular are not relevant in this process.
  • It is however commendable that WHO will no longer classify transgender as a mental disorder and that the gender identity itself is no longer pathologised. It is also a positive development that WHO has to an unprecedented extent established a process of engaging with affected communities in its latest ICD revision.
  • It is also noted here that the Coordinator under the auspices of WHO has done valuable work towards service mapping and establishing an initial clinician’s database.

Suggestions for future processes for consultation:

  • It is essential to continue this trend of involving all affected communities in ICD revisions, but with closer attention to- and recognition of the role of non-clinicians and the transgender community.
  • With the highly contentious ICD-11’s GIC now likely a fait accompli, it is hoped that the revision which is to follow will be better informed and more transparent.
  • Terms of reference, and rules of engagement with the stakeholders in the ICD process, should be more clear in future revisions.

Signatories and affiliation

Name / Designation and affiliation
Dr Alexandra Muller* / Senior Researcher – Gender, Health and Justice Research Unit, University of Cape Town.
Dr Arnaud de Villiers* / Health advocacy- Gender Dynamix. Generalist. Groote Schuur Hospital (GSH) transgender team.
Dr Elma de Vries* / School of Public Health and Family Medicine,University of Cape Town. GSH transgender team.
Estian Smit* / Advocacy Officer, Gender Dynamix. Gender and body diversity advocate. Independent scholar. Member of Iranti-Org ICD Expert Network.
He-Jin Kim* / Trans* and Sex Worker Activist . Regional Key Population Officer - ARASA.
Joshua Sehoole / Gender and sexual diversity activist. Regional Coordinator, Iranti-Org
Lesego Ramphele / Unisa Department of Psychology. Board member, Gender Dynamix. Member of Iranti-Org ICD Expert Network
Marion Stevens* / Coordinator, Women in Sexual and Reproductive Rights and Health (WISH) Associates. Research Associate, Africa Gender Institute; University of Cape Town.
Nthabiseng Mokoena* / South African Intersex and Trans* activist. Regional Training and Capacity Strengthening Officer – ARASA.
Ronald Addinall* / Academic at UCT. Clinical Social Worker. Transgender Specialist. Sexxologist. GSH transgender team.
Dr Simon Pickstone-Taylor* / Psychiatrist (Children and adolescents) . GSH transgender team.
Tshepo Ricki Kgositau / Trans* Rights Advocate. Regional Coordinator, Gender Dynamix.

* Participants in ICD 11 fieldtrials Protocol development meeting with WHO and stakeholders August 2013 Cape Town.

[1] At the Trans Health and Advocacy Conference in Cape Town in June 2014,transgender, gender non-conforming and intersex-focused health practitioners, advocates, activists, researchers, and members of the trans* community representing over 11 different countries and cultures, mostly from sub-Saharan Africa, signed a declaration on GIC. Available on the website of the World Professional Association for Transgender Health: