Intersex Human Rights Australia

This page was written by Morgan Carpenter and developed as part of a project for General Practice Supervisors Australia (GPSA). GPSA have kindly consented to it being published by IHRA in addition to inclusion in an LGBTIQA+ health resource published in October 2021 by GPSA.

Understanding intersex variations

Intersex is a term for a range of innate variations of sex characteristics that don’t fit medical norms for female or male bodies, including genetic, chromosomal, hormonal or genital characteristics. Multiple different terms exist to describe intersex variations including ‘disorders or differences of sex development’ or ‘disorders of sexual differentiation’ (DSD), ‘innate variations of sex characteristics’, and a range of specific diagnostic terms. Relevant diagnoses include androgen insensitivity, congenital adrenal hyperplasia (CAH) with XX or mosaic sex chromosomes, 5α reductase deficiency, 17β hydroxysteroid dehydrogenase 3 deficiency, gonadal dysgenesis, micropenis, and many sex chromosome variations.

As with every stigmatised minority, language in this area is contested and, while some traits such as 47,XXY (Klinefelter syndrome), hypospadias or even XX CAH may sometimes not be regarded as intersex (González and Ludwikowski 2016; Griffiths 2018), people with these traits experience many of the same issues of stigmatisation, isolation and medicalisation as people with commonly recognised traits. Often debates about what makes someone intersex turn on an inappropriate presumed sense of gender identification, sexual orientation, an experience of sex assignment, or uncertainty about sex (González and Ludwikowski 2016). Intersex community organisations challenge both inappropriate and tokenistic uses of nomenclature, but you may encounter these in your practice (Intersex Human Rights Australia and Intersex Peer Support Australia 2020).

Language is also contested because it can presuppose ideas that intersex traits need to be ‘fixed’ for people with intersex variations to be ‘real’ or valid women or men. Community organisations, human rights and parliamentary institutions link the term ‘disorders of sex development’ to harmful surgical and hormonal interventions that can take place before individuals can personally give informed consent (Carpenter 2018a; 2019; Office of the High Commissioner for Human Rights 2019; Senate of Australia Community Affairs References Committee 2013).

Inappropriate associations between intersex and concepts of gender fluidity, gender identity ‘confusion’, third sex categories, or being transgender are not a product of terminology like the word intersex, but occur also with “DSD” and specific physical characteristics (Hamilton et al. 2021; Houk et al. 2006; Karkazis and Carpenter 2018; Wallbank 2015). These associations between intersex and concepts around gender and identity are likely independent of nomenclature preferences, reflecting ideas about the relationships between bodies, categories and identities. It is important to recognise that, irrespective of diagnosis, people with intersex variations are a very diverse population, and do not share any universal experience of sex, gender, or sexual orientation.

People with intersex variations do not necessarily understand or use the terms intersex or DSD, and many do not identify with an LGBTQA+ community. LGBTQA+ communities often do not understand intersex or offer a safe place for cisgender heterosexual people with intersex variations. The ‘I’ is often included in the LGBTQIA+ acronym in Australia due to various overlapping issues including experiences of stigma and discrimination due to normative conceptions of sex and gender. Of course, some people with intersex variations grow up to express LGBTQA+ identities. LGBTQA+ or not, any identity is ok.

Treating the term intersex as if it refers to a non-binary sex or gender category carries psychosocial risks. Third or non-binary categories on intake forms are better termed ‘non-binary’. It is best practice to align your data collection with the ABS Standard on sex, gender, variations of sex characteristics, and sexual orientation (Australian Bureau of Statistics 2021).

Respect for the language choices of patients and their families will contribute to their wellbeing, but clinicians have long had a key role in educating individuals and parents about nomenclature. It is important to allay fears and negative connotations associated with LGBTQ identities and experiences, counter misconceptions, and facilitate access to affirmative peer support for individuals and their families. It is also essential to respect the human rights and identities of infants, children, adolescents, and adults with intersex variations.

Medical diagnosis

Intersex traits may be diagnosed at birth or in the perinatal period, or they might be determined prenatally, during puberty or adolescence, or later in life, such as when attempting to conceive a child.

Prenatal diagnosis of some traits, particularly sex chromosome variations, is possible, for example using non-invasive prenatal testing, amniocentesis, or screening during IVF. Some institutions are reporting concern about high rates of pregnancy terminations for some sex chromosome variations, and these are not commensurate with the realities of life with an intersex variation. Prenatal treatment to modify genital appearance in congenital adrenal hyperplasia prioritises appearance over established cognitive development risks (Dreger, Feder, and Tamar-Mattis 2012). Most intersex traits are not candidates for pre-conception screening because the adverse impacts of having an intersex variations are not intrinsic but are instead associated with stigma and social norms (Kirk et al. 2020). It is essential not to emphasise unlikely negative outcomes, and to provide referrals to affirmative support. With love and support, people with intersex variations can live happy and fulfilling lives.

Diagnosis in the perinatal period can occur either due to a visible difference that complicates sex assignment, or due to adrenal insufficiency. Adrenal insufficiency can be fatal if not treated, and testing is being rolled out nationally as part of the newborn bloodspot screening program (Department of Health 2020)

Some intersex traits become evident due to physical changes at puberty (such as virilisation or under-virilisation), or an absence of physical changes at puberty (such as amenorrhea or delayed puberty). Other traits, including sex chromosome variations like 47,XXY (Klinefelter syndrome), are known to have relatively low rates of diagnosis.

Neurological and related developmental issues may be present in some cases (notably with sex chromosome variations), and renal or other issues may also be features (for example, of Mullerian agenesis). Each of these may require referral to specialists. Many people with intersex variations will experience infertility or impaired fertility. This can be a significant source of distress, both personally and within relationships.

The times of diagnosis and of disclosure of medical information to an adolescent can be the most challenging times for patients. Diagnosis can call people’s identities, self-conceptions and future possibilities into question. Open and early disclosure is critical to maximise the choices that individuals have over their bodies, and also reduce the risks of snap decisions. Contact with peers can help individuals and parents to make better informed choices. Support from a psychologist, counsellor or social worker can also be helpful.

Surgical and hormonal interventions

Some medical interventions on infants and young children are urgent and necessary for physical health, including on the grounds of:

• evidenced high risks of gonadal tumours,
• managing an inability to urinate, and
• treatments to manage salt wasting associated with congenital adrenal hyperplasia.

Some traits are also associated with neurodevelopmental issues (such as ADHD), developmental delays, or renal issues. Individuals old enough to consent may also need or wish to undergo medical interventions including genital, gonadal and fertility-related interventions. Support is needed to ensure these choices are informed, supported by evidence of efficacy, and in line with their preferences and values.

Infants and children with intersex variations are still routinely subjected to feminising or masculinising surgeries, hormonal treatments, and associated medical examinations or dilation. Clinical research is generally of very low quality, reliant on small case studies where clinicians study their own patients, and limited by ascertainment and confirmation bias. For example, a small study by clinicians at RCH Melbourne (Warne et al. 2005) has been interpreted differently in a systemic review (Schützmann et al. 2009), but is still relied upon by authors at that hospital in 2020 as a justification for unnecessary early surgical interventions (Hutson 2020).

Despite calls for more research dating back to 1995 (Sandberg 1995), global clinical statements report a lack of evidence in support of early ‘normalising’ medical interventions, and a lack of clinical consensus about timing, necessity and procedures (Lee et al. 2016; Vora and Srinivasan 2020). Consensus, lack of consensus, existing evidence and lack of evidence are each used to justify early surgeries to ‘normalise’ children’s bodies (Vora and Srinivasan 2020), indicating that such interventions are grounded in the values and beliefs of clinicians (Carpenter 2020). Reports exist from multiple jurisdictions in Australia showing that unnecessary medical interventions are routine, and may take place on the grounds of gender stereotypes, parental distress or other psychosocial rationales (O’Connor 2016; Adikari et al. 2019; Vora et al. 2016; Carpenter 2018b; 2018a; Vora et al. 2021).

Clinicians working with adolescent and adult populations have criticised an absence of non-surgical pathways (Liao, Wood, and Creighton 2015). Clinical reports clearly interpolate social and cultural factors into decision-making (Hegarty et al. 2020; Roen and Hegarty 2018; Chief Minister, Treasury and Economic Development Directorate 2021). Early surgeries are known to carry risks for cognitive development (Schneuer et al. 2018). Evidence also suggests that parents do not provide fully informed consent on behalf of their children and many may experience regret (Roen 2019; Timmermans et al. 2018; Vavilov et al. 2020).

Interventions based on non-urgent rationales have been condemned by community organisations, a Senate inquiry, and human rights institutions (AIS Support Group Australia et al. 2017; Office of the High Commissioner for Human Rights 2019). Independent community organisations call for an end to deferrable early medical interventions, along with transparency and accountability through independent oversight, and lifetime human rights-affirming standards of care (AIS Support Group Australia et al. 2017).

There is also evidence of ideas about gender norms and obsolete data on cancer risks being used to remove gonads of children (Senate of Australia Community Affairs References Committee 2013; Australian Human Rights Commission 2021). Clinical reports persist in framing infant surgeries as a means of resolving parental distress (Szymanski et al. 2019; Wolfe-Christensen et al. 2017) or risks of future stigma (Carpenter 2018b; O’Connor 2016). The Senate community affairs references committee reported in 2013 that such rationales for surgery are circular and an inappropriate response to stigma and distress. The Australian Human Rights Commission (2021) ‘agrees that “normalising” interventions appear to exacerbate a cycle of stigma about bodily diversity, thereby being used to justify further medical interventions’. Human rights bodies have drawn attention to misuses of best interests tests in justifying medical interventions grounded in gender stereotypes and social norms, stating that this test should never outweigh a right to personal consent (Office of the High Commissioner for Human Rights 2019). Internationally, many jurisdictions have begun to legislate in response to a failure to effectively self-regulate (Government of Iceland 2020; Malta 2018; OII Europe 2021).

In response to these concerns and evidence of continuing harm in medical settings, the Australian Human Rights Commission has called for reform of the criminal law to end medical interventions grounded in psychosocial rationales, implement independent oversight and national guidelines and promote better research (Australian Human Rights Commission 2021). ACT and Victoria have made public commitments to reform (Senate of Australia Community Affairs References Committee 2013; Australian Human Rights Commission 2018; Chief Minister, Treasury and Economic Development Directorate 2021; Department of Health 2021).

These issues may arise in relation to children in your care if they are proposed to undergo medical interventions to satisfy ideas about the genital or other physical appearance of girls or boys, or ideas that associate functionality with the idea that boys need to be able to stand to urinate. You need to be aware that these are regarded as human rights abuses and institutions may become culpable for such practices.

Psychosocial context

Like other sexual and gender minorities, people with intersex bodies are stigmatised and individuals can experience high levels of distress. Like all children, those with intersex variations most need the unconditional love and support of their parents.

Negative experiences of medicine, non-disclosure, stigmatisation, and experiences of difference including infertility, all contribute to trauma (Roen 2019; Machado et al. 2015). These experiences mean that patients might prefer not to be in your clinic. Compassionate, trauma-informed care is essential, ensuring that your patient consents, is engaged, and in control. Affirmative, open, and age-appropriate disclosure can counter risks and experiences of shame and secrecy.

Community connectedness and access to a GP are important protective factors, mitigating risks of suicidal ideation, anxiety and depression (Hill et al. 2020; Lee et al. 2016). GPs can play a key role in promoting open communication, including in situations where youth may experience communication obstacles in hospital and home settings, an absence of affirmative information in education settings, and suffer the impact of popular misconceptions (Callens, Kreukels, and van de Grift 2021). Referrals can be made to independent community organisations, listed below.

People with intersex variations have suffered a history of deliberate non-disclosure of medical histories and diagnostic information, and such approaches still persist in our region with an impact on individuals’ ability to manage their health and their engagement with health services (Lee et al. 2016; Office of the Privacy Commissioner 2018).

Psychosocial rationales, including risks of stigmatisation and the distress of parents and family members are commonly cited as rationales for early surgical intervention. The Australian Human Rights Commission has criticised beliefs about psychosocial rationales for treatment in in hospital teams responsible for the care of children with intersex variations, noting that specialist bodies in psychology and psychiatry reject surgeries and other treatments for mental health reasons (Australian Human Rights Commission 2021).

Generally, clinical reports rely on small case studies that have limitations due to ascertainment and confirmation bias, such as reporting by clinicians studying their own patients. Nevertheless, a small study by clinicians at RCH Melbourne (Warne et al. 2005) is still relied upon by authors at that hospital in 2020 as a justification for early surgical interventions (Hutson 2020), even while it is interpreted as indicating high levels of distress in a systematic review (Schützmann et al. 2009).

Affirmative care strategies for GPs

• Respect the language choices of patients and their families. This will contribute to their wellbeing. Language in this area is contested. Often debates about what makes someone intersex turn on a presumed sense of gender identification, sexual orientation, an experience of sex assignment, or uncertainty about sex. It is best never to rely on these potentially harmful presumptions. Using terms that the person and their family are comfortable with is essential.
• Clinicians have a key role in educating individuals and parents about nomenclature regarding intersex variations, countering misconceptions and allaying fears and negative connotations that may be associated with LGBT identities and experiences.
• Address the health issues that people may face because of their variation. This might include neurological, adrenal, renal, fertility and related developmental issues. Psychological support can be beneficial.
• Do not assume that intersex traits need to be ‘fixed’ for people with intersex variations to be ‘real’ or valid girls or boys, women, or men.
• Align your data collection with the ABS Standard on sex, gender, variations of sex characteristics, and sexual orientation. This will avoid the trap of treating the term intersex as if it refers to a non-binary sex or gender category. Third or non-binary categories on intake forms are better termed ‘non-binary’.
• Respect the human rights and identities of infants, children, adolescents, and adults with intersex variations. This includes delaying treatment whenever possible. Ensure full informed consent is gained from the patient for any medical or surgical treatment that may impact genital appearance, gonads or fertility, and for any treatment that appears to have a rationale in social, cultural or gender stereotypes, such as the idea that boys need to be able to stand up to urinate.
• Community connectedness is a protective factor. Refer individuals and families for peer support from independent community organisations.

Third party resources

Australian Human Rights Commission

Published in October 2021, the report Ensuring health and bodily integrity: towards a human rights approach for people born with variations in sex characteristics makes strong recommendations to reform medical treatment on infants, children, adolescents and adults with innate variations of sex characteristics. It recognises continuing risks of stigmatisation and harm in medical settings, and calls for a criminal prohibition of unnecessary interventions, effective oversight, human rights affirming guidelines, and resourcing for community services including peer support and advocacy.

• Full and summary Australian Human Rights Commission reports can be found at: https://humanrights.gov.au/intersex-report-2021, accompanied by a series of fact sheets.

General Practice Supervisors Australia

In 2021, General Practice Supervisors Australia (GPSA) published a guide to LGBTQIA+ Health and Inclusive Healthcare in General Practice, together with a standalone resource on the health needs of people with intersex variations.

• LGBTIQA+ and intersex health resources

Darlington Consortium

Intersex Human Rights Australia and Intersex Peer Support Australia, together with Queensland Council for LGBTI Health have published these health and wellbeing resources that work together to visually map established health care needs and highlight potential gaps in services. This suite of resources was developed under the leadership of Bonnie Hart.

• Psychosocial Impact Map: pathways and pitfalls navigating healthcare services, peer support and advocacy
• Service Referral Flowchart: A high level graphic depiction of how referral pathways should operate between different health and social service providers
• Healthcare and Services Map: a map of health and wellbeing services needed at different life stages
• Best-Practice Indicator Checklist: an evaluation tool to ensure service delivery is affirmative, inclusive, rights-based and trauma informed. The tool currently provides indicators matched to existing industry accreditation standards across 6 sectors – primary health care; mental health; peer-led intersex organisations; education, skills & employment; social services; and health specialists

These resources can be downloaded free for personal use or review from https://darlington.org.au/yellowtick/

Victorian government

In 2019 the Victorian government published a resource on the health and wellbeing of people with intersex variations. The document provides an overview of health and medical considerations, with attention to the specific needs of people with particular variations of sex characteristics. IHRA has reservations regarding some of the material in this report, including a supposition that parental consent to medical interventions satisfied human rights concerns regarding unnecessary and coercive medical interventions grounded in gender stereotypes.

• Read the Victorian Department of Health and Human Services report
• Read our response

Royal Australian & New Zealand College of Obstetricians and Gynaecologists

In December 2018, the Royal Australian & New Zealand College of Obstetricians and Gynaecologists O&G Magazine published a special issue on LGBTQIA health. The magazine contains articles on intersex people by Morgan Carpenter and Dr Jenny Beale, and a paper on health screening by Dr Kimberley Ivory.

• Morgan Carpenter (co-executive director of IHRA) wrote on What do intersex people need from doctors?
• Dr Jenny Beale provides a clinical overview of biological and human rights considerations.
• Dr Kimberley Ivory provides guidance in relation to screening programs.

Senate Community Affairs References Committee

The Community Affairs References Committee is the Senate committee charged with inquiries into policies regarding medicine and healthcare. In 2013 it undertook an inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia, and including the involuntary or coerced sterilisation of intersex people.

The report raised major concerns about medical ethics and the treatment of intersex people in medical settings in Australia. It made 15 recommendations to ensure practices meet human rights norms. As of 2021, and publication of the Australian Human Rights Commission report on health and wellbeing, those recommendations have not been implemented.

• Read the 2013 Senate committee report
• Watch cross-party speeches on the report in the Senate, 2014
• Our statement on the report, with links to our submissions, and those of other parties.

Peer and family support referrals

The following organisations provide independent affirmative support for individuals, parents, and families.

Intersex Human Rights Australia: resources, policy guidance and community development. https://ihra.org.au

Intersex Peer Support Australia (the Androgen Insensitivity Syndrome Support Group Australia): provides support for individuals and family members irrespective of diagnosis. https://isupport.org.au

Intersex Trust Aotearoa New Zealand: provides support for individuals and family members irrespective of diagnosis, community development and policy guidance. https://ianz.org.nz

MRKH Australia: provides support for people impacted by MRKH and related traits. https://mrkhaustralia.org

Resources

Intersex Peer Support Australia and Intersex Human Rights Australia. 2020. ‘Healthcare Pathways’. 26 October 2020. https://ihra.org.au/pathways/.

Intersex Human Rights Australia and Intersex Peer Support Australia. 2020. ‘Inclusive Practice’. 26 October 2020. https://ihra.org.au/inclusion/.

Lum, Steph, ed. 2019. YOUth&I Issue 1. https://darlington.org.au/wp-content/uploads/2019/10/YOUthAndI-Layout-Final-Web.pdf.

Lum, Steph. 2021. ‘Youth’. Intersex Human Rights Australia. 29 March 2021. https://ihra.org.au/youth/.

Intersex Human Rights Australia. 2013. ‘Intersex for Parents’. 18 May 2013. https://ihra.org.au/parents/.

ReachOut Parents. 2019. ‘Supporting an Intersex Teenager’. 2019. https://parents.au.reachout.com/skills-to-build/connecting-and-communicating/things-to-try-supportive-parenting/supporting-an-intersex-teenager.

References

Adikari, T, B O’Brien, T Bagchi, and RMN Kimble. 2019. ‘Presentations and Outcomes of Patients with Disorders of Sexual Development (DSD) in a Tertiary Paediatric and Adolescent Gynaecology (PAG) Service’. Presented at the RANZCOG Annual Scientific Meeting 2019, Melbourne. https://ranzcogasm.com.au/wp-content/uploads/2019/10/243.pdf.

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.

Australian Bureau of Statistics. 2021. ‘Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020’. 14 January 2021. https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release.

Australian Human Rights Commission. 2018. Protecting the Human Rights of People Born with Variations in Sex Characteristics in the Context of Medical Interventions Consultation Paper. https://www.humanrights.gov.au/our-work/sexual-orientation-gender-identity-intersex-status/projects/protecting-human-rights-people.

Australian Human Rights Commission. 2021. Ensuring Health and Bodily Integrity: Towards a Human Rights Approach for People Born with Variations in Sex Characteristics. Sydney, Australia: Australian Human Rights Commission. https://humanrights.gov.au/intersex-report-2021

Callens, Nina, Baudewijntje P.C. Kreukels, and Tim C. van de Grift. 2021. ‘Young Voices: Sexual Health and Transition Care Needs in Adolescents with Intersex/Differences of Sex Development—A Pilot Study’. Journal of Pediatric and Adolescent Gynecology 34 (2): 176-189.e2. https://doi.org/10.1016/j.jpag.2020.11.001.

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Carpenter, Morgan. 2018b. ‘The “Normalisation” of Intersex Bodies and “Othering” of Intersex Identities’. In The Legal Status of Intersex Persons, edited by Jens Scherpe, Anatol Dutta, and Tobias Helms, 445–514. Cambridge, England: Intersentia. https://doi.org/10.1017/9781780687704.028.

Carpenter, Morgan. 2019. ‘Bodily Integrity’. Intersex Human Rights Australia. 4 January 2019. https://ihra.org.au/bodily-integrity/.

Carpenter, Morgan. 2020. ‘Intersex for Healthcare Practitioners: The Medical Model of Intersex and Human Rights Response’. Presented at the NSW Health Agency for Clinical Innovation, October 26.

Chief Minister, Treasury and Economic Development Directorate. 2021. ‘Key Issues in the Prohibition of Deferrable Medical Interventions on Intersex Children: Listening Report on Submissions Received’. https://www.cmtedd.act.gov.au/__data/assets/pdf_file/0008/1745837/Intersex-Project-Listening-Report-final-v.2.pdf.

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