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Historic bill brings flood of tears

There was scarcely a dry eye in the gallery when Parliament passed the Assisted Reproductive Technology Bill 2024 (Qld).

I was sitting among a small group of donor conceived people or their parents – who were anxious to know where they or their children had come from. I was there as I had pushed for several aspects of the Bill to come into law. Unlike them, my daughter will know how she came about, as my husband and I have been fortunate enough to know both our surrogate and egg donor.

And then it happened. The Opposition supported the Bill. The Bill passed on the voices. There were cheers and clapping from the gallery, followed by the inevitable response from the acting Speaker, “Order in the Gallery!” And we all cried.

During the debate, the usual groups of semi-bored school students passed through, watching proceedings. I counted over 60. If those students were representative of Australian society as a whole, that meant three of them were born from some form of assisted reproductive technology, like IVF – as one in 17 children born today are conceived that way.

This was a historic moment. For the first time, Queensland’s 24 IVF clinics will be subject to state licensing, and there will be a central donor registry – as already exist in other states except Tasmania, and soon in the ACT. As sought by advocates, the registry will have retrospective transparency. Those men, primarily doctors, but some lawyers too, who donated sperm all those years ago who were promised anonymity, will no longer be anonymous to their donor conceived offspring.

The law has caught up with the reality that anonymity is dead like the dodo, thanks to picture scraping apps, like Google reverse image search, and DNA databases like Ancestry.com and 23andme.com.

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Until 2004, egg, sperm or embryo donation in Australia was anonymous, under Ethical Guidelines issued by the National Health and Medical Research Council. From 2004, donor conceived offspring, after they turned 18, could find out their donor’s details. But it was not retrospective. Records were kept by individual clinics.

Australian IVF clinics must be accredited by the Reproductive Technology Accreditation Committee of the Fertility Society of Australia and New Zealand1 under both Commonwealth2 and matching state3 and ACT law. The NT, alone, does not have a matching law. In order to retain RTAC accreditation, each clinic must comply with the RTAC Code of Practice, which in turn incorporates the NHMRC Ethical Guidelines4. The Ethical Guidelines act in effect as licensing conditions.

A difficulty has been that RTAC is a bit of a blunt instrument. The Ethical Guidelines are not law. Accordingly, all that RTAC can do is to accredit or de-accredit. It has no power to fine or otherwise sanction non-compliant IVF clinics.

Every Queensland IVF clinic will need state licensing as well as RTAC accreditation. Non-compliance with the Act can mean loss of licence or a fine or both.

Act commences – in part

The Act received Royal Assent on 19 September and is now partially in force. Different parts of the Act are to commence at different times. The licensing provisions are said to commence in September 2025.

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The Act requires that the use of gametes from close family members (what would be considered incestuous) is prohibited5. ART services for children, except for fertility preservation, are prohibited6. Sex selection, except for a medical reason, is prohibited7.

Family limits, a requirement for the gamete provider to consent to posthumous use, and storage limits for donates gametes and embryos are yet to commence.

The number of donor related Australian families, to reduce the risk of consanguinity, will be limited to 108. This has been considered the national cap for many years, but like the rail gauges, there is no consistent cap nationwide. NSW has a cap of five women in NSW. WA has a cap of five women worldwide. The ACT has just introduced a cap of four in the ACT and nine nationwide.

Gametes or embryos produced from those gametes cannot be used after the death of the gamete provider- unless the gamete provider has provided written consent9.

Donated gametes or embryos from them must not be stored for more than 15 years without the consent of the chief executive10. The time limit for a person’s own gametes or embryos (without donor) is not governed by the Act, but by the Ethical Guidelines, and is at the discretion of the IVF clinic concerned.

Posthumous retrieval and use

One of the trickier areas is when a wife11 discovers that her husband has had an accident or stroke and wants to retrieve his sperm so that she can later have children. Currently, to enable posthumous retrieval, the temptation is run off to the Supreme Court and make an urgent application, often out of hours, so that the doctor, scientist and hospital or morgue official can ensure the sperm is retrieved within 24 hours of death.

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Some judges doubt whether the Court has jurisdiction12. But in any event, the simpler, quicker and cheaper process has been to rely on the Transplantation and Anatomy Act 1979 (Qld), make a flurry of phone calls13, including where necessary to the coroner, and, fingers crossed, the retrieval happens in time.

The Act now contains an easier procedure for retrieval from dead or non-responsive people, to be done by a medical practitioner for use in an ART procedure for the person’s spouse14. The dead or non-responsive person must have consented to the retrieval or at least did not object to it, and is likely to have supported posthumous use. In exceptional circumstances where the spouse is incapacitated and cannot reasonably make an informed decision about retrieval, or cannot be contacted, any member of the family of the person or spouse acting on behalf of the spouse, can authorise retrieval.

This provision came about because some years ago I had to advise that a doctor could not retrieve from a non-responsive man, as there was no authority to do so. By the time the man died, the sperm was non-viable. I wrote to the Minister for Health, Shannon Fentiman, seeking that this outcome not be visited upon other soon-to-be widows.

For the moment, posthumous use is governed by the NHMRC Ethical Guidelines. The section requiring independent authorisation15 is to commence once regulations start.

End of discrimination

Until 19 September, Queensland law said that IVF clinics could discriminate in the provision of assisted reproductive services based on relationship status or sexuality. It is likely the provision was constitutionally invalid, falling foul of the Sex Discrimination Act 1984 (Cth), s.22. It was a sweet victory to see this exemption repealed, which I had sought since 2018.

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Central registry

Every IVF clinic maintains their own registry, so those who donate eggs, sperm or embryos can be identified. The central registry to be run by Births, Deaths and Marriages will empower donor conceived people aged 16+ to only ask one place in Queensland, than potentially 24. Clinics have to hand over their records, which in one case stretches back to the 1970s, to the central registry.

Following Victoria’s lead (and since legislated in South Australia, and promised in the ACT), the registry will have retrospective transparency from when donations commenced. Whether old records, often handwritten by individual doctors, can be read or decoded is another matter.

Men who donated pre-2004 have told me that their “children” might come after their worldly goods, or at least their estate. If the man donated on the express or implied understanding that he would have nothing to do with any child born, he is not a parent16. Men in this position should however be obtaining specialised succession advice, just in case.

The next 10 years

Former Health Minister Greg Hunt and Professor Rachel Swift have set out a plan on behalf of the Fertility Society for a national central registry and a uniform fertility law. A country of 27 million will soon have six central registries, and eight systems of IVF regulation. Most IVF companies operate across state boundaries, with a myriad of state laws to comply with, increasing costs to consumers. The sooner there is one uniform law and one registry, the better.

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Footnotes
1 The author is the secretary and a director of the Fertility Society of Australia and New Zealand. This article is written in his personal capacity.
2 Research Involving Human Embryos Act 2002 (Cth).
3 In Queensland: Research Involving Human Embryos and Prohibition of Human Cloning for Reproduction Act 2003 (Qld).
4 NHMRC, Ethical Guidelines on the use of assisted reproductive technology in clinical practice and research (2017, updated 2023).
5 S.22.
6 S.23.
7 S.24.
8 S.25.
9 S.26.
10 S.27.
11 It can be the reverse, or apply in same sex relationships, but overwhelmingly it is widows dealing with the loss of their husbands.
12 For example, Re Cresswell [2018] QSC 142.
13 It is not uncommon to make 60 or 80 calls within a few hours.
14 S.29.
15 S.31.
16 Masson v Parsons [2019] HCA 21 at [54].

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