On March 22, 2023, the ACT government introduced the Variation in Sex Characteristics (Restricted Medical Treatment) Bill 2023. This legislation will be an Australian first and will take action to prevent unnecessary medical interventions on intersex children, protecting and promoting their human rights. The Bill has been welcomed by Intersex Human Rights Australia and LGBTIQ+ Health Australia.
PHAA noted in a July 2022 letter of support for the ACT Bill that these unnecessary, deferable interventions can have terrible consequences. These include “pain, trauma, shame, loss of sexual function and sensation, urinary incontinence and urgency, a need for ongoing medical treatment or repeat surgeries, [and] experiences of violation and sexual assault.” Effects can also include loss of autonomy, loss of choice, and, in some cases, reinforcement of incorrect sex assignment.
Medical interventions and approaches to people of diverse sex characteristics must be underpinned by principles of human rights, equity, inclusion, and intersectionality, in accordance with PHAA’s (2021) Policy Position Statement, The Health of People with Diverse Genders, Sexualities, and Sex Characteristics. The ACT Bill is an important step forward and is aligned with the Darlington Statement, the 2017 joint consensus statement by Australian and Aotearoa/New Zealand intersex organisations and independent advocates.. The statement calls for an effective legislative protection from discrimination and harmful practices on grounds of sex characteristics, including in medical settings. It also calls for independent human rights affirming oversight of clinical decisions, which the ACT bill does.
Current clinical thinking
In 2020, the annual Melbourne Medical Student Conference held a session on the medical treatment of people with intersex variations. Participants included Morgan Carpenter from Intersex Human Rights Australia, and Professors John Hutson, Sonia Grover, and Clare Delany of the University of Melbourne and Royal Children’s Hospital Melbourne. A session recording is publicly available for educational purposes, with a copy on the IHRA website. The debate between bioethicists and paediatric surgeons regarding intersex medical interventions provides a rare insight into current clinical thinking around intersex practices.
This resource may be of interest for those wanting to better understand the need for legislation such as that introduced in the ACT. A transcript was added to the site to accompany the video which contains discussions of human rights violations in medical settings. The video contains a discussion of language preferences, and the diversity of personal experiences of innate variations of sex characteristics. It is noted early in the video that innate variations are an expected part of natural human bodily diversity, which is contradicted once the surgeons begin talking, illustrating why deferable interventions occur.
The panel includes two surgeons, and the conversation in the debate provides examples of how surgical expertise guides thinking, and how surgical specialism influences and determines views as to the psychosocial care considered appropriate. The presence of bioethicists on the panel provides an ethical perspective and key guiding principles for deciding on best care for children with intersex variations, specifically that children are not at physical risk.
Better understanding needed
Morgan Carpenter from Intersex Human Rights Australia stresses that, “…there’s not much evidence to say there is widespread understanding of intersex variations anywhere in the world let alone in Australia…”.
It’s hoped that by sharing this resource more people might gain a better understanding of intersex variations, and the importance of advocating for more legislation criminalising deferrable irreversible interventions that violate human rights.
A new national psychosocial support program called Interlink has been established to provide professional and peer support for people with innate variations of sex characteristics, and their family members. It is now open for referrals at https://ilink.net.au.
Morgan Carpenter provided valuable comments on an earlier draft of this blog article.
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