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House of Assembly - Fifty-Fifth Parliament, First Session (55-1)
2024-02-08 Daily Xml
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Assisted Reproductive Treatment (Posthumous Use of Material and Donor Conception Register) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 30 August 2023.)

Ms THOMPSON (Davenport) (16:34): I rise to speak to the Assisted Reproductive Treatment (Posthumous Use of Material and Donor Conception Register) Amendment Bill 2023, and what a pleasure it is to speak on a crucial piece of legislation that holds the power to change lives in profound ways. Imagine for a moment being unable to fully understand your own genetic make-up, to lack crucial information about your biological heritage. This is the reality for countless individuals born through donor conception. Denied access to their donor information, some are left grappling with unanswered questions about their identity, their medical history or their cultural roots.

Granting donor-conceived individuals the right to access their donor information is a matter of fundamental human rights. Every individual has the inherent right to know their origins, to piece together the puzzle of their identity and to have access to vital information that could impact their health and wellbeing should they so choose.

In 2017, Professor Sonia Allan led the state government's review of the Assisted Reproductive Treatment Act. In this review, Professor Allan included recommendations that South Australia establish a donor conception register and provide for donor-conceived people aged 18 and over the right to access information about their donors. Subsequently, a donor conception register was established in 2021, and I congratulate the Hon. Connie Bonaros from the other place for her excellent work in making that happen.

Today, the register holds information on donors, recipient parents and persons born as a result of donated material. This bill seeks to enhance the operation of that register by allowing donor-conception participants access to certain types of information and overturning the historical preservation of anonymity of donors. Importantly, this bill also seeks to expand the existing legislative scope to allow for the legal posthumous use of ovum or embryo, as is currently permitted with sperm.

Regarding donor conception data, this bill will enable the retrospective function of South Australia's donor conception register and enable safe and supported access to the information it contains. Put simply, these sensible amendments will allow interested donor-conceived people to access information about their donor no matter when they were born. In doing so, South Australia will not only join jurisdictions including Victoria, New South Wales and Western Australia that all have donor conception registers available to donor-conceived people, but South Australia will also follow Victoria in legislating the retrospective disclosure of a donor's identifying information for donors prior to 2004.

The Malinauskas government has given careful consideration to this bill and sought expert advice from stakeholders across the country, some of whom are joining us in the gallery today, including people from the donor conception community. I am grateful to have had the opportunity to speak directly with one of the stakeholders. Damian Adams is in the gallery today and lives in my neighbourhood. He is a donor-conceived person, a researcher at Flinders, and has also completed a PhD on the welfare outcomes of donor-conceived people, so I could not have asked for a more qualified person to explain to me the real impact of this bill.

For more than 30 years, Damian searched for the identity of his father and was continuously denied that information. It was not until 2019 that Damian found his father using a DNA search. He says learning the identity of his father was a life-changing moment. He has since travelled to Queensland on five separate occasions to visit him and his new extended family.

Damian has been advocating to government on this matter for a long time. In fact, this week I found 2009 Hansard records from when the former member for Fisher (now Davenport), the late Bob Such, spoke on an earlier version of the legislation where he, too, shared the story of Damian. I am so pleased that, in the 15 years that have passed since then, Damian has learned the identity of his father and that he is still working with the donor community to make the process easier for others. So thank you to you and the other stakeholders for your involvement in this bill. Every individual has the right to embrace their own story.

Stakeholders and subject experts like Damien supported not just the development of the bill itself but also helped inform the proposed model as well. As a result, we find ourselves presented with workable, ethical and respectful amendments to what is understandably sensitive legislation. The increased availability of direct-to-consumer DNA tests and services like Ancestry have also contributed to donor-conceived people being able to find out the identity of their donor and, conversely, donors also finding their own children. However, this approach does not provide the systems, the support and assurances that would be present under the proposed regulatory systems for South Australia.

With this legislation comes the controlled release of information already circulating in the public domain in a much more sensitive way. In recognising the impacts that may be felt by pre-September 2004 donors, who were once guaranteed lifelong anonymity, the state government will provide counselling and other support services to historic donors who might need it.

While there are inherent sensitivities associated with this change, it is important to note that this amendment is not without precedent, with similar decisions having been taken and enacted in other jurisdictions. I also note there will be no requirement for historical donors to have contact with their donor-conceived offspring.

It is important for people to have access to information about their genetic heritage. It not only plays a significant role in the development of a person's identity and self-esteem but also enables them to access important medical and genetic information for things like family planning.

Turning now to the posthumous use of human reproductive material, currently sperm can be accessed posthumously for reproductive purposes; however, an ovum or embryo is considered off-limits. What is that about? This bill seeks to rectify this, meaning that people whose female partners have sadly passed away will be afforded reproductive opportunities that may once have passed them by. This amendment would bring South Australia in line with Victoria and New South Wales.

As is the case with proposed changes to the donor conception register, full and careful consideration has been given to this amendment. Strict conditions will apply to the posthumous use of human reproductive material, including requirements for the deceased person to provide a consent prior to their passing and that their partner, seeking use of reproductive material, had been living in a genuine domestic relationship with the deceased person before their death.

It is my view that this bill strikes a reasonable balance between the protection of a donor's welfare and a donor-conceived person's access to important genetic and medical information. This is a thorough and reasonable change coming at the right time. I commend this bill to the house.

Mrs HURN (Schubert) (16:42): I rise to speak on the Assisted Reproductive Treatment (Posthumous Use of Material and Donor Conception Register) Amendment Bill 2023. In doing so, I indicate that I am the lead speaker for the opposition.

Can I say from the outset that the opposition, those on this side of the house, are supportive of the bill—albeit I do flag one amendment that I will outline later on. I also acknowledge Damian Adams, who is in the gallery today. It was fantastic to have the opportunity to meet with him towards the end of last year and, like the member for Davenport, just hear his journey to finding out the missing piece of his genetic puzzle. It was very touching for everyone who was able to speak with him.

I would like to acknowledge the long legislative journey that the donor conception register, and indeed assisted reproductive treatment and technology more broadly, has been on to really get to the bill that is before us today. There are so many individuals, there are many groups and organisations, even members of the other place, including the Hon. Connie Bonaros, who have worked for such a long period of time for this type of framework and for this bill to come to fruition.

Those people have been on long journeys themselves and, although it may go without saying, for many people this legislation involves deeply personal, complex, expensive and emotional processes. I know the member for Davenport has reflected on this, and in my research I, too, was interested to know that it is estimated one in six couples in Australia experience some measure of infertility. I think all of us in this place know someone who has had those struggles, and it is deeply troubling.

Assisted Reproductive Treatment or ART, as I might refer to it for the purposes of this bill, does have an important role to play in allowing people to grow their families, to build their families and, ultimately, to reduce the heartache that is so often associated with infertility.

Once considered an innovative and cutting-edge treatment, many aspects of ART are now considered as standard medical practice, with one in 20 women who gave birth in Australia in 2020 using some form of ART to do so. The South Australian ART Act has, as its paramount consideration, the rights of any child who may be born as a result of this type of treatment and technology. The paramountcy of the child's welfare is reflected in the guiding principles of the National Health and Medical Research Council's ethical guidelines on the use of reproductive technology in clinical practice and research.

As we discuss the bill before this house in all its different complexities, I would like to reflect on the wellbeing of a child born as a result of ART in its many forms and note that whilst there is a balance to be struck in some elements of the bill, the opposition believes that at all times consideration must be given to the end result, the ultimate aim of this technology, that is, of course, the safety and welfare of the resulting children and the formation of families.

When this bill was first brought to the house last year, I did some research and South Australia, in particular the University of Adelaide, has a very long and proud history of innovation and pioneering research into fertility, conception and reproductive technology. In fact, in 1971, the University of Adelaide developed the first frozen semen bank in Australia and with it the first sperm donor program. In 1985, the University of Adelaide's Obstetrics and Gynaecology department achieved South Australia's first birth from frozen embryo.

Within the next decade, the Obstetrics and Gynaecology department would go on to achieve world-leading medical advancements in reproductive technology, successfully achieving the world's third birth following intracytoplasmic sperm injection, and the fifth in the world to achieve the preimplantation genetic diagnosis in relation to cystic fibrosis. Much of this world-renowned research was a result of pioneering medical professionals, the likes of Professor Colin Matthews AO, Professor Alastair MacLennan AO and Professor Jeffrey Robinson CBE. Really, those advances in the late 1970s through to the early 2000s made much of the technological advances that we are discussing today possible.

During the work of the University of Adelaide, sperm donors provided their reproductive material for research purposes and many ultimately up until 2004 on the condition of anonymity. In fact, donors had no other option at that stage but to donate on the assumption of anonymity and doing so anonymously.

As we know now, the anonymous donation of gametes, that is both sperm and eggs, is no longer allowed in Australia. While donations are frequently provided on a de-identified basis, all donors are required to make their identity available to children conceived from their donation when the child turns 18 years of age. Of course, there are also instances of known donation, where the donor has a connection to the recipient and the children born as a result of the donation may be informed at an early age of their genetic heritage.

Now, having reflected on that really important history, I might get to the four main aspects of the bill. Of course, as has been outlined, there are four. First of all, it updates the legislation to bring the use of female gametes or ovum and embryos in line with what is already provided for the posthumous use of sperm and specifies how that can occur.

Secondly, it changes the operation of the donor conception register to allow for the sharing of information about donors in certain circumstances and ensures assisted reproductive technology and treatment clinics maintain suitable records and provide information to the register. Thirdly, it amends the Births, Deaths and Marriages Registration Act to allow for donor information on the birth certificate of donor-conceived children. Fourthly, it removes the historical anonymity of donors who provided human reproductive material prior to 2004.

I will speak firstly to the posthumous use of material. Like the member for Davenport, I was shocked to note that for many years you could use sperm posthumously, but it has not been possible to use eggs after death. This bill seeks to amend the ART Act to bring the use of female gametes and embryos in line with what is currently permitted for the posthumous use of sperm—big tick. I think it is fitting that we seek to make relevant amendments through this process to clarify women's intentions and those of her surviving domestic partner for the use of her genetic material, and that does build on recent-ish legislative changes in relation to surrogacy in South Australia.

It is hoped that assisted reproductive treatment providers will reflect these amendments in their processes, policies and counselling, to make clear to couples and individuals who are undergoing assisted reproductive treatment that they can specify their intentions for the use of their human reproductive material after death. That is something that we will go through in the committee stage, but we would be very interested to note at what point in that process people are given the option of being able to use their ova posthumously.

Secondly, in relation to the operation of the donor conception register, it is our assumption—and we will clarify this, once again, during committee—that a suitable framework to host the register will be in place and there will be tight controls for accessing and, of course, safeguarding the information contained within it, because the register will obviously hold quite a significant amount of confidential and personal information, and securing the register and preventing misuse of that information is obviously critical. During the course of the last few months, there has been an element of concern about the safety and the security of the information on the donor conception register.

In a practical sense, we know that in recent years many donor-conceived people are turning to online genealogy websites such as ancestry.com, taking DNA tests and joining support groups to help find and ultimately connect with their donors and their families. They are essentially connecting the dots, which is something that Dr Adams did so many years ago.

The purpose of the donor conception register is to safely manage the release of donor information to children conceived as a result of their donation. Donor-conceived children will be required to apply to the register for access to identifying and medical information about their donor, and it is only once an application is made that the process of releasing information to the donor child—and only to the donor child—can begin.

The assumption of the donor conception register—and I say 'assumption' because there are a lot of practical details that are yet to be determined through regulation and the like—is that applicants will be provided with counselling and support services prior to receiving information about their donor. Donors will have three months to select their preferred mode of contact, and may even advise that they do not wish to be contacted at all. Regardless of the contact preference set, all information will be released, including the information of donors who donated under the assumption of anonymity pre-2004.

The third point is in relation to birth certificates. Noting a child's donor-conceived status on their birth certificate will go some way towards recognising the critical role that a donor plays in a child's conception, while also allowing situations of known donation to have the donor's detail on a birth certificate from birth. There have been some discussions around the automatic nature of this notation, which has raised some concerns; nevertheless, we do support that element of the bill.

We understand that close to 80 per cent of donor-conceived children are not aware of their conception status. Of course, to be able to access the donor conception register, children will need to be aware that they are donor-conceived—which we know is not currently happening in the volume that we would hope, nor has it happened historically.

Reflecting the nature of a child's conception—that is, a donor's involvement—on a child's birth certificate from birth will, we believe, go some way towards ensuring that the circumstances surrounding a child's conception are made clear to the child early on in life: again, breaking down some of that stigma and giving them further ownership, if you like, of their identity. We look forward to asking questions during committee on the practical implementation of this change, and how it is anticipated that Births, Deaths and Marriages will interact with individuals and assisted reproductive providers to verify accurate information.

That brings me to the fourth point of the bill, and that is in relation to pre-2004 donors. As I have already flagged, pre-2004, if you were donating your sperm, you did so on the basis of anonymity. On this side of the house, we do have concerns about the release of information of donors who provided their reproductive material prior to 2004 and now, under the bill, will have that anonymity retrospectively lifted—that is, those people who never gave consent for their identifying or medical information to be released because they donated on the condition of anonymity.

This bill proposes to remove that anonymity, and it has raised concerns on this side of the house. As I mentioned earlier, we must strike the right balance between the rights of the child conceived as a result of ART and protecting those donors who will now automatically lose that anonymity.

I would like to make it clear that we have no concerns whatsoever about the release of medical information to donor-conceived children for pre-2004 donors—absolutely none at all. In fact, we do believe that that is the critical element that can impact their lives. It impacts their family planning, the health and wellbeing of donor-conceived children, their subsequent children and so on and so forth. We do believe that withholding that type of information does go fundamentally against the purpose of this bill and this reform.

However, the release of identifying information about a donor who provided human reproductive material at the very earliest almost 20 years ago is concerning in some regard. I therefore indicate that we will be moving an amendment in relation to clause 5 of the bill, and that will reinstate some of the protection of anonymity that would have been historically provided, effectively providing an element of choice. That is, those donors who provided human reproductive material for the purposes of ART on the basis that their identity would not be disclosed without their consent will have a choice to notify the minister in writing that they do not wish for their identifying information to be released.

We do hope that this is not an issue for the vast majority of donors pre-2004, but we believe that this amendment does strike the right balance. It will allow choice. By identifying information, we mean name, date of birth, last known address and any donor code—all items which the Victorian donor conception register has identified as identifying information.

As I have stated, all of the medical information will be provided. That is not something that will become an option for donors pre-2004, but we do believe that this amendment simply ensures the option of choice, and anonymity is maintained. To be clear, this amendment does not relate to any person who donated after 2004, because of course after that point you could not donate on the assumption of anonymity.

Finally, I would like to thank Dr Damian Adams from Donor Conceived Australia. I think he provided a real insight into the struggles that he had, and I think that is largely reflective of the concerns that many people in the donor-conceived community have, because they have this missing piece of their genetic puzzle and ultimately their identity. I hope that, as a result of the passing of this bill, there will be more stories like this, that more people can get that missing piece of their genetic puzzle without such struggle. We just need to get the balance right.

Debate adjourned on motion of Hon. A. Koutsantonis.

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