Constructing intersex and DSD in Australian data

This paper was written in 2021 to inform the Australian Institute of Health and Welfare. It is shortly to be published with support from the INIA Innovative Training Network funded by the European Commission.
Page last reviewed 23 May 2022

Ambivalent Attention and Indeterminate Outcomes
This paper was originally prepared in November 2021 by Morgan Carpenter to inform the Australian Institute of Health and Welfare (AIHW), an independent, statutory government agency. The publication of this report in May 2022 has been supported by the INIA Innovative Training Network, which is funded by the European Commission’s Marie Skłodowska-Curie Actions program project number 859869.

As yet, there is no coherent understanding of intersex people in Australian law, policy and data. This paper presents multiple different and incommensurate models that represent the intersex population in different ways, including in Australian data, and in policy and practice. These reflect different values and beliefs about the population.

A dominant clinical model regards people with intersex variations as female or male with ‘disorders of sex development’ that need to be ‘fixed’ to ensure familial and social integration. Data frameworks associated with this model include disease and procedure classifications. Diagnoses are enumerated in the International Classification of Diseases (ICD). Procedures are enumerated in Medicare Benefits Schedule item codes. Clinicians have focused on studies of their paediatric surgery outcomes, and on genetics research.

A dominant socio-legal model regards people with intersex variations as ‘sex diverse’, neither female nor male, and needing to be represented through legal frameworks and data models recognising a third sex. Further, public policies and statements frequently imply that actions on grounds of sexual orientation or gender identity address matters of concern to people with intersex variations. Data frameworks associated with this model include categories of sex and gender in guidelines on recognition of sex and gender, birth registrations, gender recognition and anti-discrimination laws. Research on LGBT(I) populations has typically focused on the needs and circumstances of adults and adolescents with particular marginalised identities.

These two models interact in sometimes unexpected ways, including in ABS data on stillbirths that, until November 2021, included ‘indeterminate sex’ as both an International Classification of Diseases (ICD-10) category and a sex category. While the data present cases in each category, there were no intersecting cases.

Neither the clinical model nor the socio-legal model respect the diversity of the population nor human rights to health and bodily integrity. Both models reflect the dominance of non-intersex interests, with little (albeit recently increasing) account taken of community perspectives. Intersex-led community organisations are few, relatively new, and impoverished. The needs and circumstances of people with intersex variations are frequently misrepresented and poorly reflected in available data. There is a lack of data on adult health and welfare, ageing, and intersections with Indigeneity and disability.

The paper calls for reform to:

  • legal sex/gender classifications, to avoid conflating innate variations of sex characteristics with these classifications.
  • disease classifications.
  • paediatric and adult Medicare Benefits Schedule codes, to take account of community and human rights recommendations, and ensure that paediatric surgeries are not incentivised, before individuals are able to express their own values and preferences about treatment.
  • reform to clinical and LGBTI research, and resourcing for community-based participatory research
  • provide for affirmative education and community engagement.

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Via the University of Huddersfield and the INIA project.