Intersex Human Rights Australia

In late 2020, the Royal College of Pathologists of Australia published a profoundly problematic statement on pathology for transgender and intersex persons. The Position Statement, “Pathology Testing for Transgender and Intersex Individuals – Statement of Best Practice for Medical Pathology Laboratories” is available at https://www.rcpa.edu.au/Library/College-Policies/Position-Statements/Pathology-Testing-for-Transgender-and-Intersex-Ind

finalised in December 2020, the Position Statement was apparently drafted by a Transgender and Intersex Taskforce, and the sole intersex-focused content is the following two sentences:

Intersex is a person born with sexual anatomy that does not fit the typical biological definitions of male or female. Intersex individuals may choose to remain as intersex rather than identify as male or female.

This language frames intersex as biological and as a choice of identity. The Position Statement provides no analysis of health or human rights concerns, or recommendations relevant to the specific needs of people with intersex variations.

In May 2021 Morgan Carpenter wrote to the College expressing concern about incoherence in this short statements. The letter is reproduced in full below, with the name of a contact in the Royal College redacted. To date, we have only received an acknowledgement of receipt of Morgan’s letter from the College.

In the last year we have pieced together information from different sources, including the College and with a psychologist and endocrinologist who participated in the College’s Taskforce that created it. The information available to us suggests that consideration of intersex issues occurred late in the development of the statement, and without community representation.

In our view, the Position Statement makes incoherent statements about who intersex people are supposed to be, without addressing intersex-specific health and human rights concerns. Moreover, it is harmful in that it substitutes transgender health and human rights issues in place of statements addressing the health and human rights of that population and people with innate variations of sex characteristics. As a process, the way in which the Position Statement was developed was inappropriate and flawed. It should not have been published in its current form and it should be withdrawn.

From: Morgan Carpenter
Subject: RCPA Position Statement on testing of transgender and intersex persons
Date: 24 May 2021 at 3:51:20 pm AEST
To: [REDACTED NAME]@rcpa.edu.au

Dear [REDACTED NAME]

Thank you very much for returning my call just now. I am a bioethicist and a co-executive director of Intersex Human Rights Australia (IHRA). IHRA is a national intersex-led charitable company that promotes the human rights and health of people with intersex variations. Intersex people have innate variations of sex characteristics that do not fit medical or social norms for female or male bodies. There are more than 40 different intersex variations that can be determined prenatally, at birth, during puberty, when trying to conceive a child, or at other times. Examples include androgen insensitivity syndrome, gonadal dysgenesis, micropenis, sex chromosome variations, and congenital adrenal hyperplasia with XX or mosaic sex chromosomes. Because our bodies are different, we can experience stigmatisation, discrimination and harmful practices, including medical interventions to make our bodies more typically female or male.

Misconceptions frequently associate particular gender identities or sex classifications with intersex traits – for example, an incorrect assumption that intersex people necessarily have nonbinary gender identities. Intersex people may grow up to express an LGBT identity (that is, to be same sex attracted or gender diverse) or they may grow up to identify in other ways (for example, heterosexual and/or identify with sex assigned at birth/cisgender).[1] People with intersex variations are at risk of human rights violations irrespective of the words we use and our agency to express any identity.

The words that individuals use to describe themselves typically respond to what we have been taught by parents and clinicians, and to our experiences of misconceptions. Other terms that individuals may understand or utilise include “disorders of sex development” or “differences of sex development”. While IHRA opposes terms that presuppose a need to “fix” intersex bodies, we encourage respect for our diversity as a population, including respect for the diversity of our identities, and for the nomenclature that individuals use.

Since December 2016, Intersex Human Rights Australia has two part-time staff members funded by foreign philanthropy to engage in systemic advocacy; these are Morgan Carpenter JP (NSW), and Councillor Tony Briffa JP (Vic). We have no core funding from Australian governments, and we rely on volunteer labour.

[REDACTED NAME], IHRA is troubled by misconceptions about the intersex population stated in the RCPA Position Statement on pathology testing for transgender and intersex individuals, dated December 2020. These include inclusions and omissions.

In relation to inclusions, an un-referenced comment states: “Intersex is a person born with sexual anatomy that does not fit the typical biological definitions of male or female. Intersex individuals may choose to remain as intersex rather than identify as male or female.”

In relation to the first sentence, we would state that “people with intersex variations have” certain anatomy, and the phrasing in relation to “Intersex is a person” is inappropriate, just is it would be inappropriate to say “Disability is a person with…” or “Transgender is a person with…”.

The intention of the second sentence is unclear. How do members of your task force reconcile the statement that people “may choose to remain” intersex rather than identify as female or male with the biological definition in the preceding sentence? Actual processes of sex determination or assignment at birth in all Australian jurisdictions of children mean that all children with intersex variations are assigned female or male.[9] How do members of your task force reconcile the statement that we may “choose to remain” intersex or identify as female or male with the reality that we are all assigned female or male at birth? It is surprising to see in this Position Statement an assumption that certain kinds of body should be associated with a certain identity.

Further, the notion that people may “choose to remain as intersex” can be juxtaposed with the disturbing but continuing practice of early involuntary or coercive medical interventions on infants, children and adolescents with intersex variations to “fix” their bodies. These matters have been the subject of a 2013 Senate of Australia inquiry,[2] an ongoing Australian Human Rights Commission inquiry,[3] statements by international human rights institutions (including on practices in Australia),[4] and actions by the Australian Capital Territory and Victorian governments.[5] Clinical reports also identify that previous experiences of trauma in healthcare settings lead to a loss of individuals to follow-up,[6] including loss to follow-up research and avoidance of healthcare. The loss of bodily integrity and bodily autonomy caused to early unnecessary elective medical interventions is consequential.

A belief that someone who has an intersex variation should have a non-binary sex/gender record can be expected to be perceived in negative ways by women and men with intersex variations,[7] and constructions of intersex as a third sex are explicitly opposed in community declarations.[10]

In relation to omissions, there are a number of areas that are relevant to a position statement on pathology and people with intersex variations:
– the impact of treating intersex as a sex/gender on disclosure by women and men with intersex variations, or who use different nomenclature to avoid identity-related misconceptions about their bodies.
– much of the clinical research on people with intersex variations focuses on genital appearance, while people with intersex variations may be excluded from mainstream research as we may be seen as “confounding” research outcomes. Specific sex differences may be based on chromosomes, hormonal levels, social, or other factors – with different impacts on people with different intersex traits. Diagnosis-specific issues may in some cases be captured in diagnostic information on pathology requests, but they have become detached from consideration in this Position Statement through the use of a different term and lack of engagement with the intersex movement in Australia and Aotearoa/New Zealand.
– the impact of personal and community histories of non-disclosure and trauma in healthcare settings on individuals’ knowledge about their bodies, and lack of access to pathology services.
– the role of pathology centres in enforcing unethical practices, including unnecessary elective procedures, and sports regulations that are opposed by the World Medical Association.[8]
– the Australian Bureau of Statistics has developed a Standard on recording sex, gender, variations of sex characteristics and sexual orientation that can provide a model for respectful data collection.[11] This was published in January 2021, but subject matter experts available to the RCPA participated in the Standard development process.

IHRA would welcome the opportunity for discussion on these matters with you and the Board of Professional Practice and Quality.

kind regards
Morgan Carpenter

[1] 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.
Carpenter, Morgan. 2018. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry 15 (4): 487–95. https://doi.org/10.1007/s11673-018-9855-8.
[2] Senate of Australia Community Affairs References Committee. 2013. Involuntary or Coerced Sterilisation of Intersex People in Australia. http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/Involuntary_Sterilisation/Sec_Report/index.
[3] 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.
[4] 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.
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/.
Committee on the Elimination of Discrimination against Women. 2018. ‘Concluding Observations on the Eighth Periodic Report of Australia’. CEDAW/C/AUS/CO/8.
Committee on the Rights of Persons with Disabilities. 2019. ‘Concluding Observations on the Combined Second and Third Reports of Australia’. CRPD/C/AUS/CO/2-3.
Committee on the Rights of the Child. 2019. ‘Concluding Observations on the Combined Fifth and Sixth Periodic Reports of Australia’. CRC/C/AUS/CO/5-6.
Human Rights Committee. 2017. ‘Concluding Observations on the Sixth Periodic Report of Australia’. CCPR/C/AUS/CO/6.
[5] 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.
Victorian Government. 2020. ‘Discussion Paper for the Victorian LGBTIQ Strategy’. https://engage.vic.gov.au/lgbtiqstrategy.
Department of Health & Human Services. 2019. ‘Health and Wellbeing of People with Intersex Variations Information and Resource Paper’.
[6] Lee, Peter A., Anna Nordenström, Christopher P. Houk, S. Faisal Ahmed, Richard Auchus, Arlene Baratz, Katharine Baratz Dalke, et al. 2016. ‘Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care’. Hormone Research in Paediatrics 85 (3): 158–80. https://doi.org/10.1159/000442975.
Johnson, Emilie K., Ilina Rosoklija, Courtney Finlayson, Diane Chen, Elizabeth B. Yerkes, Mary Beth Madonna, Jane L. Holl, Arlene B. Baratz, Georgiann Davis, and Earl Y. Cheng. 2017. ‘Attitudes towards “Disorders of Sex Development” Nomenclature among Affected Individuals’. Journal of Pediatric Urology, May. https://doi.org/10.1016/j.jpurol.2017.03.035.
[7] 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.
Carpenter, Morgan. 2018. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry 15 (4): 487–95. https://doi.org/10.1007/s11673-018-9855-8.
[8] World Medical Association. 2019. ‘WMA Reiterates Advice to Physicians Not to Implement IAAF Rules on Classifying Women Athletes’. 2 May 2019. https://www.wma.net/news-post/wma-reiterates-advice-to-physicians-not-to-implement-iaaf-rules-on-classifying-women-athletes/.
[9] Carpenter, Morgan. 2018. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry 15 (4): 487–95. https://doi.org/10.1007/s11673-018-9855-8.
[10] 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.
Third international intersex forum. 2013. ‘Malta Declaration: Public Statement by the Third International Intersex Forum’. Floriana, Malta. https://ihra.org.au/24241/public-statement-by-the-third-international-intersex-forum/.
[11] 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.