Researching intersex populations

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How can intersex people be included effectively in research studies and surveys? Intersex Human Rights Australia receives a large number of requests to promote and distribute research surveys seeking intersex participants, and also requests for research subjects. We need high quality research that addresses the needs and circumstances of people with innate variations of sex characteristics, and we favour community-based participatory research that recognises and responds to those distinct concerns. The following principles set out our policy and guidance on studying this population.

We provide quick information on a separate page on inclusion in forms.

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)

At the same time, research on LGBTQ/LGBTIQ sexual and gender minorities frequently presumes particular experiences of sexuality and gender non-conformity, and focuses on their implications for adult populations.

These approaches have incommensurate, and sometimes contradictory, 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 (AIS Support Group Australia, et al. 2017)

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 LGBTQ/LGBTIQ research.

We need 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.

We are only able to support and promote research studies that respect the human rights of people with innate variations of sex characteristics, that use neutral language, and that 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. Too much clinical research displays confirmation bias, showing a reliance on studies of patients by their own clinicians and a perceived need to legitimate early ‘normalising’ surgeries and hormonal treatments.

Please be aware of the histories of clinical practice and current practices, and also of human rights, bioethical and other critiques of clinical research.

Studying intersex people with LGBTQ populations?

On the other hand, we have been unable to usefully reference any LGBTQ/LGBTIQ 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.

Make sure you understand the population. Make sure you know who you are including in your research and why. Make sure you know who you are excluding from your research and why. Make sure that your exclusions do not form part of a systemic pattern of exclusion. It is a false dilemma to posit choices in research design between systematic exclusion or tokenism. Two resources on intersex inclusion and raising the bar published by Intersex Human Rights Australia, Intersex Peer Support Australia and the National LGBTI Health Alliance can help you to identify these issues (Intersex Human Rights Australia, et al. 2020).

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 (Yogyakarta Principles 2017)

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. Make sure you can disaggregate LGBTIQ populations throughout, recognising the circumstances and intersectionality of intersex and LGBTQ populations.

If your LGBTIQ+ data do not contain a representative or statistically significant number of intersex people then they are likely to be better described as “LGBTQ” data. Framing non-inclusive research as “LGBTI” research can have negative consequences for intersex populations, including misrepresentation. We strongly encourage specific research on intersex populations, and addressing community needs and demands.

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 or consult the Oxford Bibliographies on intersex as a starting point for further research.

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. 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 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, irrespective of whether or not they have an innate variation of sex characteristics.

Add a separate question on sex 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.

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”.

IHRA has contributed to the improvement of data quality in many different settings, and so these questions are consistent with the federal Style Manual and the 2020 Australian Bureau of Statistics Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables.

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” and, in medical contexts, “congenital”.

Studying the diversity and health needs of the intersex population

In healthcare settings, specific data is essential. To accurately study an intersex population, including the broad diversity of that population, it is appropriate to ask for any available diagnoses, or a description. This information is required in order to ensure a strong and more representative spread of diagnoses and lived experiences. 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.

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 Intersex Peer Support Australia (IPSA).

You may find it helpful to ask how study respondents prefer to talk about their bodies and characteristics.

Inventories of sex characteristics

If you are researching health needs or healthcare, an inventory of sex characteristics (sometimes called an organ inventory) may be appropriate. The goal is to identify the specific reproductive organs and anatomy that an individual may have, taking account of diverse developmental variations and surgical histories. It is intended to make sure that patients have access to healthcare services they need, and are not repeatedly asked about body parts they don’t have.

Bear in mind that variable disclosure of health information to people with intersex variations (Office of the Privacy Commissioner, NZ 2018) mean that many people will lack full information about their body parts.

For more information see interACT (2020) and Deutsch et al. (2013).

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, IPSA 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 and meaningful

People with intersex traits can and will engage with relevant, respectful surveys, but properly including intersex status as a survey question is only one element in ensuring effective and meaningful inclusion.

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, LGBTQ 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. These assumptions can be regarded as a form of tokenistic inclusion. They fail to consider the actual characteristics and needs of the intersex population, but they remain widespread and are likely to contribute to failures to participate in LGBTIQ research.

If you are constructing a study of LGBTIQ populations, make sure your study is understandable and meaningful throughout for heterosexual, cisgender intersex people who are unfamiliar with terms used by LGBTQ populations.

For example, framing a study as for “people identifying as LGBTIQ” is unlikely to attract many intersex respondents, and may only attract respondents who are LGBTQ, skewing research results accordingly. If all your intersex participants are LGBTQ then this is clear indication that your study has not been inclusive of intersex people.

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.

Consider how your research can be reframed to include effective consideration of health, human rights and other considerations affecting people with intersex variations.

If you are conducting face-to-face interviews with people and discussing issues relating to experiences of stigma, discrimination, and forced or coercive medical practices, your research must be trauma-informed and consider how to support your interviewees after the session.

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

Consider how a survey is imparted and distributed to potential participants. Using filter questions presuming identification with an acronym is a cause of ascertainment bias, narrowing the range of respondents with innate variations of sex characteristics.

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.

Some people with intersex variations may prefer paper copies of surveys, or prefer to be interviewed in order to participate in your research. These preferences are not random and so a lack of attention to them risks introducing a form of bias; they may be linked to systemic issues affecting people with particular traits, such as sex chromosome variations.

Disclosure, benefit and ethical oversight

The level of disclosure for such research is often high. Researchers should bear in mind that repeatedly disclosure of personal information can be an unreasonable impost on intersex individuals. Research – particularly research discussing medical histories – must be trauma-informed.

Many resources exist 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 must meet high standards for both researcher and participant, including ethics approval by university or other research institutions.

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.

Checklist

This is a new short checklist for research teams that we are trialling in response to a common research situation, where intersex people are studied as part of a study of LGBTI populations.

  1. We have familiarised ourselves with the literature on intersex, and have researched the history, needs and situation of people with innate variations of sex characteristics in relation to the issues addressed by our study.
  2. We have engaged experienced and accountable intersex community members in designing our study, and we compensate them for their time and expertise.
  3. We demonstrate an understanding of the intersex population in our study design, materials and language.
  4. Our study recognises the human rights of people with innate variations of sex characteristics, including the right to bodily integrity.
  5. We demonstrate our respect for the confidentiality, health and wellbeing of research participants.
  6. We ask a specific question on innate variations of sex characteristics, in line with recommendations by IHRA, and the 2020 ABS Standard.
  7. We ask information on specific intersex variations and specific sex characteristics when relevant.
  8. Our survey does not presume identification with an acronym or LGBTQ experiences of sexual orientation or gender identity.
  9. The survey is accessible and meaningful throughout for heterosexual, cisgender intersex people who are unfamiliar with terms used by LGBTQ populations.
  10. We disaggregate LGBTIQ populations throughout, recognising the circumstances and intersectionality of intersex and LGBTQ populations.
  11. We have identified distribution methods outside of LGBTQ contexts.

Next steps

If you wish us to participate in your advisory group or reference group, please contact us when designing your project. Typically, this will mean before you have obtained funding or ethics approval.

If you have created your survey instrument and you wish us to share your study or invite responses to your study, please:

  1. Send us a full Word or PDF copy of your survey instrument.
  2. Let us know how people with intersex variations were involved in developing the study goals and methods.
  3. Let us know how people with intersex variations will benefit from the study.
  4. Respond to the questions in the trial checklist, if the context applies to your survey.
  5. Contact us before your survey launches.

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 and resources

AIS Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Eve Black, Kylie Bond, Tony Briffa, Morgan Carpenter, et al. 2017. ‘Darlington Statement’. https://darlington.org.au/statement

Asia Pacific Forum of National Human Rights Institutions. 2016. Promoting and Protecting Human Rights in Relation to Sexual Orientation, Gender Identity and Sex Characteristics. Sydney, Australia: Asia Pacific Forum of National Human Rights Institutions. http://www.asiapacificforum.net/resources/manual-sogi-and-sex-charactersitics/

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. ‘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. doi:10.1007/s11673-018-9855-8.

Carpenter, Morgan. 2020. ‘Intersex’. In Oxford Bibliographies in Sociology, edited by Lynette Spillman. New York: Oxford University Press. doi:10.1093/OBO/9780199756384-0232.

Deutsch, Madeline B, Jamison Green, JoAnne Keatley, Gal Mayer, Jennifer Hastings, Alexandra M Hall, Madeline B Deutsch, et al. 2013. ‘Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group’. Journal of the American Medical Informatics Association 20 (4): 700–703. doi:10.1136/amiajnl-2012-001472.

interACT. 2020. ‘Intersex Data Collection: Your Guide to Question Design’. interACT. https://interactadvocates.org/intersex-data-collection/

Intersex Human Rights Australia. 2009. ‘Media and Style Guide’. https://ihra.org.au/style/

Intersex Human Rights Australia. 2016. ‘Demographics’. https://ihra.org.au/demographics/

Intersex Human Rights Australia, Intersex Peer Support Australia, and National LGBTI Health Alliance. 2020. ‘Inclusion Guide to Respecting People with Intersex Variations’. https://darlington.org.au/inclusivepractice/

Intersex Human Rights Australia, Intersex Peer Support Australia, and National LGBTI Health Alliance. 2020. ‘Raising the Bar: How to Be an Intersex Ally’. https://darlington.org.au/inclusivepractice/

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

Office of the Privacy Commissioner, NZ. 2018. ‘Handling Health Information of Intersex Individuals’. Office of the Privacy Commissioner. https://www.privacy.org.nz/blog/handling-health-information-of-intersex-individuals/

Yogyakarta Principles. 2017. The Yogyakarta Principles Plus 10: Additional Principles and State Obligations on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics, to Complement the Yogyakarta Principles. http://www.yogyakartaprinciples.org/principles-en/yp10/

Document history

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. In February 2021 we improved the material on ascertainment bias and added a checklist, materials on sex characteristics inventories, the federal Style Manual and the 2020 ABS Standard in relation to variations of sex characteristics.

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