Researching intersex populations

Intersex in surveys and research
How can intersex people be included effectively in research studies and surveys? This page provides advice and recommendations on including people born with variations of sex characteristics.

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.

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.

Research priorities

Current research on intersex populations frequently suffers from framing effects. Clinical research predominantly focuses on infants, children and adolescents, with limited research on adults and a lack of long-term outcome data:

Available clinical data lacks adequate sample sizes, independence, and often lacks relevant control groups. It is often framed around clinical preoccupations with, for example, genital appearance, heterosexuality, and gender conformity (Carpenter, 2018)

While research on LGBT/LGBTI sexual and gender minorities frequently presumes particular forms of sexuality and gender non-conformity, and focuses on their implications for adult populations. These approaches have incommensurate, and sometimes opposing, beliefs about the needs and characteristics of intersex people, with consequences for data quality and interpretation. Neither approach is firmly grounded in the needs of people with intersex variations.

Our research priorities are set out in a limited way in the 2017 Darlington Statement, a community consensus statement by organisations and individuals in Australia and Aotearoa New Zealand:

30. We call for more research, including clinical, sociological and psychological research, led by community input. Clinical research, including longitudinal research, requires true, non-medicalised controls.

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.

We expect researchers to have 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.

Bad practice

In May 2019, we received an invitation for people with androgen resistance to participate in a study on “social experiences of individuals who have had genital reconstructive surgery to correct an intersex condition”. The terms “reconstructive” and “to correct” are loaded. They show bias and a flaw in reasoning, presupposing the validity of particular kinds of medical intervention.

For us to consider sharing and engaging with research, studies must use neutral language and enable respondents to freely express their own views about such interventions.

Clinical research

On the one hand, much of the medical research pathologises intersex people as subjects for treatment, focusing on our genitalia and other physical characteristics, 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.

Clinical research is subject to implicit and explicit assumptions and methodological issues that adversely affect the quality of clinical evidence. These include a reliance on small and non-representative case studies, and forms of bias that include sampling bias, apprehension bias, and conflicts of interest. Nevertheless, to research an intersex population, it is essential to be aware of histories and current practices, including clinical frameworks. It is also essential to be aware of human rights, bioethical and other critiques of clinical research. If you’re not sure where to start, then please ask us for a bibliography.

Studying intersex with LGBT populations?

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.

Ensure that you can disaggregate your data by population. The Yogyakarta Principles plus 10 recognises that sex characteristics are distinct from other grounds, and so should research surveys and analysis:

RECOGNISING that the needs, characteristics and human rights situations of persons and populations of diverse sexual orientations, gender identities, gender expressions and sex characteristics are distinct from each other;

Similarly, 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.

If your LGBTI data do not contain a representative or statistically significant number of intersex people then they are not “LGBTI” data; they are more likely “LGBT” data. Framing non-inclusive research as “LGBTI” research can have negative consequences for intersex populations, including misrepresentation.

The intersex movement and intersex studies

The intersex movement is growing, with effective (albeit poorly resourced) advocates in Australia and countries across the world. We understand our communities and populations because we are intersex-led. One of our demands is “nothing about us without us”, expressed in the Darlington Statement.

Intersex studies is an interdisciplinary and growing field, frequently involving collaboration with intersex-led organisations, and also involving academics with lived experience. This field promotes community-based participatory research. If the field is unfamiliar to you, then please ask us for a bibliography.

Accurately identify the population

Ask questions that reflect the diverse lived realities of the population, without making assumptions about sex classifications, gender identities, sexual orientation or other variables.

Asking 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.

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.

Suggested basic survey question

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.

Studying the diversity of the intersex population

To accurately study an intersex population and the broad diversity of that 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. At least one survey has been removed from publication because of this serious failing. Consider how you can demonstrate your awareness of this concern to reassure respondents and your ethics oversight committee. These data also require interpretation, so you will need to consider involving an institution like IHRA or AISSGA.

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.

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.

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.

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. Research – particularly research discussing medical histories – must be trauma-informed.

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.

Useful resources

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.

More information

Carpenter, Morgan. ‘Intersex-Related Research Must Have Direct Input from Intersex Community’. Star Observer. 21 October 2015. http://www.starobserver.com.au/opinion/intersex-related-research-must-have-direct-input-from-intersex-community/141997

Carpenter, Morgan. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry 15, no. 4 (December 2018): 487–95. https://doi.org/10.1007/s11673-018-9855-8.

An earlier version of this page was published on 25 May 2012. This version was split from a combined page on forms and research in July 2019. It is periodically updated.