Including intersex people in forms, 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.


Intersex Human Rights Australia receives a large volume of requests for research subjects, and requests to promote and distribute research surveys seeking intersex participants. We favour community-based participatory research that recognises the distinct nature and concerns of people born with variations of sex characteristics. The following principles guide our policy on research participation.

Requests for information on how to include intersex people in forms and surveys comprise a large proportion of all requests that we receive. This page also provides guidance on questions for forms.

1. Understand the population

It is helpful to do some background research before approaching Intersex Human Rights Australia. There is a large volume of research on intersex people, including more than 60 years worth of medical studies, and some smaller quantity of more recent LGBT/LGBTI research.

On the one hand, much of the medical research is known to suffer from selection bias and other methodological issues, it mainly focuses on our genitalia and other physical characteristics, and it frequently pathologises intersex people as subjects for treatment (including by framing intersex variations as “Disorders of Sex Development”). For many in our community, invasive questioning begins early in life, alongside regular genital and other medical examinations. This can contribute to a feeling of survey burn-out.

On the other hand, we have been unable to usefully reference any LGBT/LGBTI research, frequently due to inaccurate assumptions about intersex people that affect participation rates and responses. These include assumptions that frame intersex people as homogeneous, as a gender identity (typically a non-binary gender identity), or assumptions that frame our experience as one of transition, or same-sex attraction.

We expect researchers to have at least familiarised themselves with the basic literature on intersex.

We strongly advise that researchers contact us early in the design process for any study that includes Australians with intersex traits. Without participation in study design we may choose not to participate at all.

2. Ask relevant and respectful questions

The federal Sex Discrimination Act, as amended in 2013, distinguishes the attribute of “intersex status” from “sex”, “gender identity” and “sexual orientation”. This approach should guide thinking about intersex inclusion.

2.1 Questions on sex or gender

Do not add intersex in a survey question about sex or gender. Intersex people have a diversity of sex and gender classifications and identities.

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 classifications of intersex persons, we all have legal sex or gender classifications. Whether or not these reflect our legal sex classifications at birth, our personal choices must be respected.

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 on the recognition of sex and gender. This will offer recognition to anyone (regardless 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, regardless of intersex status.

2.2 Add a separate question on intersex status

Some of us 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.

It is not possible to assume that survey respondents understand what is meant by the term “intersex”. We strongly recommend adding a short descriptive statement to a separate question on intersex status.

Suggested survey question:

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

or:

Were you born with a variation of sex characteristics (this is sometimes called intersex)?

Note that 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.

There may also be circumstances where it may be appropriate to ask for any available diagnoses, or to use descriptive terms such as “being born with a variation of physical sex characteristics” in place of the word intersex.

It may also be appropriate to include the responses “Don’t know” or “Prefer not to say”.

Good practice

The first broad Australian community-based survey of people born with atypical sex characteristics received 272 valid responses. It was conducted in 2015 by the University of New England and developed with a reference group including people from Intersex Human Rights Australia, AISSGA and the National LGBTI Health Alliance.

The research obtained information on demographics without presumptions about identities or preferred language, along with information on people’s experiences of diagnosis, medical interventions, health and social issues. It has provided invaluable insights.

3. Ensure the survey is relevant

Properly including intersex status as a survey question is only one element in effectively including intersex people in a study.

People with intersex traits can and will engage with relevant, respectful surveys.

If a survey is predicated only on issues of sexual orientation and/or gender identity then it is not being inclusive of intersex people. Typical failures to include people born with intersex traits include:

  • assuming an experience of identifying as queer, sexuality or gender diverse, LGBT or LGBTI
  • assuming that no LGBTI people are heterosexual
  • assuming an experience of gender transition, or an experience of having a gender identity different to legal sex assigned at birth; assuming that variations from typical embodiments signify some form of intended transition
  • assuming an experience of “coming out” to family, when most people with intersex variations first discover an intersex status from parents or doctors
  • assuming that medical interventions related to gender presentation or sex characteristics are/were voluntary; assuming that variations from typical embodiments signify choice or voluntariness in undergoing a procedure

In sum, many of these failures reflect a focus or interest in issues of identity and not embodiment, including assuming that people with particular embodiments have particular identities. Some of these assumptions may be true of some intersex people, but many of these assumptions will generally target only intersex people who are also LGB and/or transgender.

We encourage consideration of the implications of intersex bodily diversity. A survey that is inclusive of people born with intersex variations may consider issues of discrimination and stigma due to physical characteristics. It may need to consider the health, social and personal consequences of forced or coercive medical interventions.

Bad practice

Early in 2018, we responded to a request for comment on a survey that asked people born with intersex variations if work colleagues “refer to me using intersex pronouns that match those I use for myself.”

There was no evidence to support this line of inquiry. There are no intersex-specific pronouns, and intersex people have all sorts of legal sex classifications, gender identities and experiences. Even worse, the study included no lines of inquiry relating to actual, evidenced concerns about workplaces.

4. Ensure the survey is accessible

For the same reasons as ensuring survey relevance, it is necessary to consider how a survey is imparted and distributed to potential participants. Framing a study as for “people identifying as LGBTI” is unlikely to attract many intersex respondents, and may only attract respondents who are LGBT, skewing research results accordingly.

It is essential to consider distribution channels other than the “LGBTI” media. For example, an independent study of people born with atypical sex characteristics used a variety of methods, including our own channels, advertising in the journal of the Genetic Support Network of Victoria, and tailored social media advertising.

5. Disclosure, benefit and ethical oversight

The level of disclosure for such research is often high. Researchers should bear in mind that to continually and repeatedly disclose personal information at a high rate is an unreasonable impost on intersex individuals.

There exist adequate resources on this site, and other intersex-run sites, containing personal stories. Further information from Intersex Human Rights Australia members should only be sought if the research is significant and will contribute to the wellbeing and greater understanding of intersex people and issues.

The level of supervisory and ethical oversight for research projects needs to be adequate for both researcher and participant. Research projects conducted by universities, government or similar institutions will have a board of ethics, privacy is guaranteed, unauthorised disclosure is protected by law, and an appeal process is available through standard complaint channels.

Good practice

The 2014 study From Blues to Rainbows inappropriately included and framed intersex within a study on trans and gender diverse people, leading to flawed results. The researchers at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University discussed these data quality issues with us. As a result, the authors handled this problem effectively in their final report, detailing those framing and data quality concerns.

6. Useful resources

7. Summary

These issues can be summed up by considering two things. Firstly, how to respect the diverse ways in which people born with intersex variations understand ourselves and our bodies, sexes and genders. Secondly, how to respect our particular kinds of life experiences.

We appreciate thought going into these issues before contacting us, and some explanation of how these requirements may be achieved when you contact us.

This page is periodically updated.