Forms and data collection

Intersex in surveys and forms
Requests for information on how to include intersex people in forms historically comprise a large proportion of all requests that we receive. This page also provides guidance on effectively including people born with variations of sex characteristics on forms. It is newly split from a page that provides advice and recommendations on inclusion in research studies and surveys.

Intersex panel participants at the Health in Difference conference, 2018

Intersex panel participants at the Health in Difference conference, 2018. We don’t share in common the same chromosomes, birth sex assignment, gender identity. Some of us are queer and some of us are not. Some have changed sex classification and others have not.

Asking about sex or gender

It is helpful to understand the intersex population before designing forms.

On the one hand, medicine pathologises intersex people as subjects for treatment, focusing on our genitalia and other physical characteristics, including by framing individual intersex variations as “Disorders of Sex Development”. This research recognises that people born with variations of sex characteristics have diverse sex assignments and gender identities. Sex assignments typically align with clinical expectations about future gender identity, but they also reflect attitudes towards expected technical outcomes for surgical interventions, and cultural norms. On the other hand, non-medical research frequently constructs intersex people as homogeneous, as a gender identity (typically a non-binary gender identity), or reflects assumptions that frame our experience as one of transition, or same-sex attraction. Neither set of assumptions respects personal choices and enables self-determination by people born with variations of sex characteristics.

IHRA and human rights institutions such as the UN Office of the High Commissioner for Human Rights recognise that intersex populations are diverse, with more than 40 different underlying intersex variations. IHRA recognises that intersex people may have any available sex marker assigned at birth, and we may have any gender identity. We also acknowledge research suggesting that most intersex people identify with sex assigned at birth, while some intersex people identify in other ways. All of these understandings must be respected in forms and data collection.

While intersex relates to a person’s physical sex characteristics, conflating intersex with sex or gender causes numerous problems. Not least, while genetic or phenotypic sex (and generalised concepts of “physical/biological sex) have a somewhat loose relationship to the legal sex assignments and sex classifications of intersex persons, we all have legal sex or gender classifications. Whether reflecting an original assignment or not, these must be respected. In practice, knowing that someone is intersex says nothing about their sex assignment at birth or their gender identity. because intersex people have a diversity of sex and gender classifications and identities As a result, the term intersex should never be added to a question about sex or gender.

Recommended questions on sex and gender

When or if your form asks about sex and/or gender, it should support non-binary options, such as “X” or “non-binary“. X is used in Commonwealth government guidelines on the recognition of sex and gender. This will offer recognition to anyone (irrespective of intersex status) with a non-binary gender identity or legal sex.

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 intersex status.

These questions do not establish whether or not an individual is intersex. A separate question is required for this purpose.

Add a separate question on intersex status

Some intersex people are intersex, while other people might have an intersex variation or prefer other terms. We recommend removing intersex from questions about sex or gender, and asking a separate question about intersex status. This will help to prevent false negatives, failures to accurately tick a survey box. By helping to demonstrate an understanding of intersex variations, it will also help ensure commencement or completion of a survey. Separating intersex from a question on sex and/or gender will avoid misgendering people with intersex variations (describing our gender identities inaccurately), and avoid inadvertently including people who mistake intersex for a non-binary gender identity. This approach also correctly regards 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:

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.

Recommended question on intersex diversity

If you need to capture medical or detailed 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. An appropriate question can state:

Please state your diagnosis (if any) or describe your variation

In some cases, providing a non-exhaustive list of common intersex variations may assist potential respondents. This information is required in order to ensure a strong and more representative spread of diagnoses and lived experiences.

Important note: Please recognise that this is sensitive data. Please also be aware that diagnostic data combined with just one or two demographic characteristics (such as age, gender, sex, location or occupation) can and has been sufficient to identify individuals. Consider how you can demonstrate your awareness of this concern to reassure people completing your form. These data also require interpretation, so you will need to consider involving an institution like IHRA or AISSGA.

About this page

This page is periodically updated. 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.