Intersex Human Rights Australia

Numerous studies were presented by Australian teams to the I-DSD conference in Belgium this month, including several from the Royal Children’s Hospital, Melbourne. Two reports stand out, despite being listed in separate parts of the Conference Abstracts document. One on page 6 of 93 purports to show positive outcomes from early genital surgeries. Another, on page 74 of 93, appears to show that potentially bad outcomes have unclear origins, perhaps for innate reasons, or due – euphemistically – to “a consequence of management”. In fact, the two reports detail different aspects of a single study, with different conclusions from the same data.

The end table reproduces the entirety of the two different reports on a single broader study of a cohort of females with CAH aged 12-40 in Melbourne. All were subjected to “feminizing genitoplasty”, at an average age of 15 months by staff at Royal Children’s Hospital Melbourne. RCH Melbourne performed the study. In non-intersex girls, such surgeries are prohibited as Female Genital Mutilation. 

Surgical “feminising genitoplasties” are “offered”, part of “routine care”, and their prevalence such that there is no control group available in Australia to test an hypothesis that urinary issues are innate. Urinary issues are a known consequence of Female Genital Mutilation.

Although the age range for the interventions appears broad, a number of participants are still children. Three participants in the urinary component of the study are still minors, while the numbers of minors participating in the genital sensitivity component are not stated.

Body image report A concludes, on “feminizing genitoplasty”:

“The complication and reoperation rates were low. Outcomes including satisfaction with surgery timing, body image and sensation was high.”

While a urinary symptoms report B concludes:

“…this population of CAH patients have an increased probability of incontinence, urgency, and frequency when compared to a control population.”

This is a study by a hospital of people treated according to its own treatment protocols. Outcome studies are long overdue but self-assessment by the institution is subject to sample and selection bias. A critical Senate inquiry heard in 2013 that there is no long term follow-up on people subjected to medical interventions to “normalise” intersex bodies, so this study aimed to do that for a cohort of females with Congenital Adrenal Hyperplasia.

The sample size is small. Just 23 of 43 respondents who were successfully contacted by the hospital completed aspects of the study, with lower numbers for many questions. Ten (10/23) underwent multiple genital surgeries prior to the study.

It’s not clear what questions were asked and what choices were given; at least one widely quoted study failed to give respondents the ability to answer “no surgery was necessary”. The framing of such questions, and such studies, has a significant impact on findings.

It’s difficult to objectively assess sensitivity: negative consequences are likely to be observed in persons who undergo “feminizing genitoplasties” later, in adolescence, as a difference in sensation may be perceived. Those who underwent surgeries in infancy simply have no comparison. An unspecified number of respondents are still adolescents, and not sexually active. It’s not clear what is meant by “vibration” test; such testing is known to often be performed with a cotton bud or a vibrator. OII Australia does not find such testing on children to be appropriate; minors may also be in no position to judge the risks and benefits of this major sex assignment treatment. The sexual behaviour of adult participants in the study is not stated.

Further, not all people with XX chromosomes CAH, what is intended when talking about females with CAH, are actually women. A proportion identify as men or in other ways (see, for example, Family Court cases Welfare of A Child A (1993) FLC 92-402, and RE: Dylan [2014] FamCA 969). “Feminising genitoplasty” is wholly inappropriate for this group.

One report is a justification for non-consensual surgeries aimed at making the bodies of infants with an intersex variation appear more “normal”, and the other uncovers urinary issues, but neither report tells the full story. Both reports are snapshots of data selected from the same study. The only ways of identifying that the two reports come from the same study group are the statistical information and the overlapping authorship. The lesson is clear: responsibility is claimed for purported good results, but not for bad ones. They will literally be disassociated.

OII Australia does not consider surgical timing and purported efficacy to be the right questions about irreversible sex assignment treatments. The key issue is one of informed consent.

People born with intersex variations need to be given genuine prior and informed choices, to decide whether or not we wish to undergo irreversible medical treatment.

Those surgeries on children have been condemned by the UN, the World Health Organization, and the Council of Europe. An Australian Senate has called for human rights-based treatment protocols and the deferral of non-necessary interventions, and the Human Rights Commission has now called for that report to be implemented.

Thanks to Leslie, Janik and Miriam for contributing to a discussion on this analysis.