Intersex laws pushed Canberra family to find new city

A former ACT resident says he left Canberra with his family to ensure he could treat his son’s genital defect without facing criminal offences

Former Canberra resident Matthew Higginson, who moved his family to Wagga Wagga because of ‘uncertainty’ about his son continuing treatment in the ACT. Picture: Martin Ollman

Matthew Higginson made the difficult decision to relocate his family from Canberra to rural NSW to ensure he would not face criminal offences for proceeding with a series of medically necessary surgeries to correct a genital defect affecting his young son.

The departure of families from Canberra was something that was foreshadowed by the Royal Australasian College of Surgeons (RACS) before the passage of the ACT government’s world-leading reforms in June aimed at better defending the rights of intersex people.

The Australian Medical Association has also acknowledged the prospect of unintended consequences stemming from the new law and the possibility of greater pressure being placed on pediatric care in the nation’s capital.

The RACS informed the ACT government in mid-2022 that the proposed criminalisation of some surgical procedures, even when done for the welfare of an individual, was unprecedented in Australian law and could lead to a contraction in care due to the fear of prosecution.

Hypospadias is a birth defect in boys where the urethra does not terminate at the tip of the penis and Mr Higginson, 35, was told that his son, born on Valentine’s Day 2022, would need a series of surgeries over a period of years to ensure he could reproduce in the normal way.

But ACT health professionals quickly informed Mr Higginson of a possible complication: the development of legislation by the territory government to ban, where possible, medical treatments on children with atypical sex characteristics until they were old enough to consent to them.

This was a key objective of the ACT government’s action plan aimed at eliminating discrimination against and marginalisation of LGBTIQ+ Canberrans.

The legislation – known as the variation in sex characteristics bill – passed the ACT legislative assembly in June and was described by Chief Minister Andrew Barr as an “internationally significant reform”. He said the ACT was the “first jurisdiction in Australia, and one of the first in the world, to make this a reality”.

From December next year, criminal offences are scheduled to apply to people – including parents – who take children to another state or territory for the purpose of having a medical treatment that would be prohibited in the ACT, with a maximum penalty of one-year imprisonment.

“Our youngest son was born on Valentine’s Day last year,” Mr Higginson said. “He was born with what is technically captured as a ‘variation in sex characteristics.’ He is a complete male. He has a deformity of his male genitals.

“The urethra, the part that the fluids come out of, it terminates other than at the tip of the penis … With our son it actually terminates at the base of the penis.

“We got referred through ACT health to a surgeon. Within our first meeting the surgeon referred to this bill that was going through the parliament.”

The ACT government said hypospadias did meet the definition of a “variation in sex characteristics” in its legislation. But it said a draft regulation would designate hypospadias as an “excluded condition” – allowing it to be treated within the ACT subject to strict reporting requirements. However, Mr Higginson said he was concerned the government could simply change the regulation in future to capture hypospadias, arguing its inclusion in the new legislation – even as an “excluded condition” – meant there was “a layer of uncertainty there”.

“The legal uncertainty around addressing our son’s condition in accordance with the medical advice has meant that we wanted to do whatever we could to ensure this surgery could happen without being caught up by the law and the criminal penalties and, as such, was one of the strong considerations of us to relocate,” he said.

The RACS informed the government before the legislation passed that, while it supported the safety and wellbeing of intersex people, it had concerns that denying or delaying medical care could also cause harm.

In July last year, the chair of the RACS health policy and advocacy committee, Mark Frydenberg, wrote to Mr Barr and said the new ACT legislation should not include conditions such as hypospadias because of the possible harm to individuals arising from treatment delays. He also said there was no need for treatment of these conditions to be subject to approval by an oversight committee as there were not gender or ethical issues to consider.

Professor Frydenberg urged the government to reconsider the list of conditions that were captured by the legislation arguing that many were not “disorders of sexual differentiation”.

Because hypospadias has been categorised as an “excluded condition”, the doctor responsible for treating Mr Higginson’s son would be subject to onerous reporting requirements under the new ACT law. The doctor would also be required to tell the president of a new restricted medical treatment assessment board in writing once any treatment had been undertaken; whether it had been undertaken according to a specific treatment plan; and details of the plan itself.

Mr Higginson’s son underwent his first successful surgery in early September within the ACT.

Mr Higginson said: “To think that as parents we might have our ability to decide what’s best for our child taken away from us and vested in a body of unknown people who will decide what surgeries our child can and cannot have – it’s been an influence on us moving out of the territory and I just think the legislation is absurd, myself.”

In his 2022 letter, Professor Frydenberg argued that the ACT’s legislation failed to acknowledge the changes and advancements in care for intersex children that had occurred under the current multidisciplinary approach involving parents, clinicians, surgeons and psychosocial experts. He said parents were “completely overlooked in this policy” and that too much power was given to an independent body with veto powers.

The RACS provided The Australian with a statement it had prepared prior to the passage of the ACT legislation in June which sounded the alarm on the use of criminal offences. “Furthermore, the use of criminal offences is a heavy-handed tool that could force clinicians to withdraw from providing this essential service and compel families to leave the territory,” it said.

Under the ACT legislation, a surgeon or doctor who undertakes a restricted medical treatment on an intersex child without a treatment plan approved by the new assessment board faces up to two years’ imprisonment. The criminal offence provisions of the legislation and the requirement for treatment plans to be approved take effect from December 23, 2024 – one year after the other provisions in the legislation.

The AMA’s ACT president, Walter Abhayaratna, said it was important that patients were provided with greater choice over their treatments but acknowledged concern among health professionals about some of the technical issues raised by the new laws – including the impact the legislation would have on pediatric care resourcing.

The ACT government said it would be concerned if a family had moved away from the territory if it had “received incorrect advice about the effects of the reform, which has not yet commenced”.

“The government allocated funding for the training of health professionals regarding the scheme and it is anticipated that this will ensure every family that has a child with a variation in sex characteristics will get quality care advice and information, including in those cases where an irreversible medical treatment may be being proposed,” a spokesperson said. “Whilst the ACT is the first jurisdiction in Australia to implement these important reforms, similar reforms are being considered in other parts of Australia.”

The government also defended the use of criminal offence provisions in the new laws. “The criminal offences create strong safeguards for any person at risk of breaching them,” the spokesperson said.