Including intersex in research studies and surveys

OII Australia has historically received a large volume of requests for research subjects, and requests to promote research surveys seeking intersex participants. While we wish to help in any research that benefits people with intersex variations, we have had to issue advice on intersex inclusion, and implement the following policies in respect of such requests.

1. Including people with intersex traits

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.

1.1 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 classifications and gender. Whether or not these reflect our legal sex classifications at birth, they 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.

1.2 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. It 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”.

1.3 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. The first broad Australian community-based survey received 272 valid responses. It was conducted in 2015 by the University of New England and developed with a reference group including people from OII Australia, AISSGA and the National LGBTI Health Alliance. It has provided invaluable insights.

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:

  • focusing on issues of identity and not embodiment; assuming that people with particular identities have particular embodiments; assuming that variations from typical embodiments signify some form of intended transition; assuming that variations from typical embodiments signify choice or voluntariness in undergoing a procedure.
  • 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 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

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.

1.4 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 OII Australia’s own channels, advertising in the journal of the Genetic Support Network of Victoria, and tailored social media advertising.

2. OII Australia participation in research studies

We are unable to support, or help disseminate, surveys or studies that do not pay attention to our policy statements on intersex inclusion and requests for assistance.

2.1 Background research

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 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 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.

2.2 Disclosure 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 OII 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.

2.3 Study requirements

We will do our best to support research work conducted by people with intersex variations, and/or with intersex people participating in a study reference group.

We may not be in a position to support other research projects, unless:

  1. The study is framed in a way that reflects an accurate understanding of intersex, that will be respectful of the diversity of our members and the wider intersex community.
  2. Rights to privacy are guaranteed.
  3. There is free prior and fully informed consent.
  4. Research results are made available to our membership.
  5. Papers are able to be viewed without cost to those involved in the research.
  6. The research has ethical oversight.
  7. The research will benefit people with intersex variations.

3. Useful information

4. Coda

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 if/when you contact us.

In contacting us, please also bear in mind that OII Australia is an NGO with limited staff resources.

Thank you for your understanding.

Last update: December 2016. Staff resources.