Forms and data collection
This page outlines our recommendations on respectfully including intersex on forms and documents. This guidance is intended for use in intake forms and related documents that ask individuals to state their demographic characteristics. We have more detailed advice for researchers on a separate page for institutions conducting research and surveys.
Who are intersex people
We define intersex in line with a standardised definition shared by the United Nations Office of the High Commissioner for Human Rights:
Intersex people have innate sex characteristics that don’t fit medical and social norms for female or male bodies, and that create risks or experiences of stigma, discrimination and harm.
This definition does not presuppose any particular biological sex characteristics, sex, gender identity or sexual orientation.
IHRA has contributed to the improvement of data quality in many different settings, and so the following questions are consistent with:
- the federal government’s Style Manual
- the 2020 Australian Bureau of Statistics (ABS) Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables
- the Royal Australian College of General Practitioners (RACGP) Standards for General Practices (5th edition) fact sheet on Collecting and recording information about patient sex, gender, variations of sex characteristics and sexual orientation, November 2021
Asking about sex or gender
Consistent with our definition of intersex, the term intersex should never be inserted into a question asking people to record sex or gender.
Like everyone else, intersex people are assigned a sex, reflecting sex characteristics that are observed at birth. In some cases, clinicians will perform a range of tests to determine sex, typically presupposing that assignment to align with a future heterosexual, cisgender identity. Unless an individual determines otherwise for themselves, it is not ethical to disregard assigned sex.
When/if you ask about sex or gender, such a question should support non-binary options, such as “X” or “non-binary“. X is used in Commonwealth government guidelines and a national statistical standard published by the Australian Bureau of Statistics (2021). This will offer recognition to anyone with a non-binary gender identity or legal sex, irrespective of whether or not they have an intersex variation. For example:
We strongly recommend supporting multiple choice answers for questions on sex or gender. An open field for gender will be helpful for some respondents, irrespective of whether or not they have an innate variation of sex characteristics.
What is your sex?
[a field to write in a preferred term]
These questions do not establish whether or not an individual has an intersex variation. A separate question is required for this purpose.
Add a separate question on intersex characteristics
Some of us are intersex, while other people might have an intersex variation or prefer any of an array of other terms. The words we choose reflect our experiences of stigma and misconceptions, and what we are taught by our parents, clinicians and communities. Sometimes people choose different words in different situations.
Because of this diversity, questions on intersex should be separated from questions about sex or gender. Separating intersex from a question on sex and/or gender will avoid misgendering or mis-classifying people with intersex variations (describing our sex assignments, sex markers and gender identities inaccurately). It also avoids inadvertently includes false positives, people who mistake intersex for a non-binary gender identity.
Adding a specific question will help to prevent false negatives, that is a failure of someone who fits a criterion to tick a survey box that is intended for them. By helping to demonstrate an understanding of intersex variations, it will also help ensure commencement or completion of a survey. This approach also correctly can enable the management of a person’s intersex status as sensitive data, while this is not yet the case for sex or gender.
Recommended question on sex characteristics
It is not possible to assume that survey respondents understand what is meant by the term “intersex”. We strongly recommend making the question descriptive:
Were you born with a variation of sex characteristics (this is sometimes called intersex or differences of sex development)?
Intersex is a term for people born with atypical physical sex characteristics. There are many different intersex traits or variations. Do you have an intersex variation? Yes/No
It may be appropriate to include the responses “Don’t know” or “Prefer not to say”.
Important note: if the language on being “born with” is removed, then the wording asks a different question because it thus includes people who have acquired variations in sex characteristics, for example, through medical gender transition, female genital mutilation or other trauma, or other health issues. Synonyms for ‘born with’ include ‘innate’.
Recording the diversity and health needs of the intersex population
If you need to capture medical or health information on an intersex population, it is appropriate to ask for any available diagnoses, or a description. In doing so, it is important to be aware that some people may lack an accurate diagnosis, and some people mistake intersex for other concepts. This is sensitive information. We recommend consulting our guidance on including intersex people in research studies.
Australian Bureau of Statistics. 2021. ‘Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020’. https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release
Australian Government. 2020. ‘Gender and Sexual Diversity | Style Manual’. https://www.stylemanual.gov.au/format-writing-and-structure/inclusive-language/gender-and-sexual-diversity
Carpenter, Morgan. 2019. ‘Researching Intersex Populations’. Intersex Human Rights Australia. July 23. https://ihra.org.au/research/.
Carpenter, Morgan. 2022. ‘Ambivalent Attention and Indeterminate Outcomes: Constructing Intersex and DSD in Australian Data’. University of Huddersfield. https://morgancarpenter.com/intersex-dsd-australian-data/.
Office of the High Commissioner for Human Rights. 2019. ‘Background Note on Human Rights Violations against Intersex People’. https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx
In July 2019, information on researching intersex populations was split from this page. This information can now be found at https://ihra.org.au/research. If you need more explanation on our recommended questions then the research page may be helpful to you.
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