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Legislative Council - Fifty-Fourth Parliament, First Session (54-1)
2018-12-05 Daily Xml
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Bills

Assisted Reproductive Treatment (Review Recommendations) Amendment Bill

Introduction and First Reading

The Hon. C. BONAROS (16:51): Obtained leave and introduced a bill for an act to amend the Assisted Reproductive Treatment Act 1988. Read a first time.

Second Reading

The Hon. C. BONAROS (16:52): I move:

That this bill be now read a second time.

Who am I and where do I come from? These are fundamental questions we might all ask ourselves as we grow up, tracing our lineage back through generations here and abroad through both sides of our family tree to determine the answers to those questions.

For many of us the answers are easy enough to obtain by asking parents and family members, locating documents at our disposal and even through the use of social media. But for donor conceived children those questions, already made more complex because of their conception, are filled with anguish and for many remain unanswered due to the secrecy around detailed records, the destruction of records or the lack thereof, the scattered nature of records held across multiple locations and the failure to create a donor conception register in South Australia.

South Australian donor conceived children, the assisted reproductive industry and other stakeholders have been calling for better and more cohesive access to information for more than 30 years, and government advisory bodies and committees have openly supported the establishment of a donor conception register for at least the past 17 years; yet nothing has been done.

This is why, on behalf of SA-Best, I am introducing the Assisted Reproductive Treatment (Review Recommendations) Amendment Bill 2018 to force the issue of a donor conception register. Donor conceived children now in adulthood have waited for far too long. The bill seeks to enshrine in legislation several recommendations from the extensive January 2017 report on the Review of Assisted Reproductive Treatment Act 1988, authored by leading legal health academic Dr Sonia Allan for the then South Australian minister for health.

The former Labor government tabled its response to Dr Allan's report on 29 November 2017 and either supported or provided in-principle support for Dr Allan's recommendations which formed the basis of this bill. Parliament was subsequently prorogued and the issue has stalled again. At the time, Dr Allan said that she was proud to have served the South Australian community and to lead changes that would have a significant impact on people's lives and psychosocial wellbeing. Yet, the Marshall government has not made the establishment of a donor conception register a priority.

For these reasons, I have introduced this bill. We, on the crossbench, are always here to help. Specifically, the bill gives effect to recommendations 16, 18, 19, 20, 21 and 23 of Dr Allan's report that required some level of legislative change. The issue of a donor conception register has had a long history in this state and it is worth revisiting that history to understand how frustrating it has been for all involved.

At least from the early 2000s, the South Australian Council on Reproductive Technology (SACRT) was calling for the establishment of a donor conception register. In 2003, the SACRT donor conception register working party communicated its concerns about the delay in establishing a donor conception register to the then minister for health. That was some 15 years ago. In 2005, the Social Development Committee and the SACRT raised concerns about the lack of access to identifying information about gamete or embryo donors in South Australia and recommended that donor registrations be addressed. That was 13 years ago. The response from the then minister for health, Lea Stevens MP, was:

Competing health priorities did not allow for the establishment of a donor conception register to be further progressed at [that] time but that a proposal has been drafted and that she hoped to be able to progress the initiative as soon as funding became available.

The SACRT donor conception register working party moved to work with clinics to build on information collection and management procedures to allow voluntary registers to be established in the interim.

In 2006, the SACRT reiterated to the minister its preference for legislative amendments to remove donor anonymity, and for both mandatory and voluntary registers to be established within a government agency. In 2007, the Social Development Committee again recommended that the legislation be amended to ensure that people conceived through donor conception have access to information about their genetic parentage should they request it.

Around this time and prior to the changes to South Australian legislation and regulations in 2010, expectations were raised about a national donor register in Australia which was being considered by the Standing Committee of Attorneys-General in the context of a nationally consistent policy framework. Ultimately in 2011, the commonwealth government stated that it did not have the power to establish a national register, referring the matter back to the states and territories of Australia, recognising that issues involving access to information by donor conceived people should have been addressed as a matter of priority.

Prior to this decision by the commonwealth government on 1 September 2010, the regulation of assisted reproductive technology treatment (ART) in South Australia underwent significant reform. Parliament passed the Reproductive Technology (Clinical Practices) (Miscellaneous) Amendment Bill 2009 to amend the Reproductive Technology (Clinical Practices) Act 1988 and repealed the Reproductive Technology (Code of Ethical Clinical Practice) Regulations 1995.

The changes were intended to amend and update the Reproductive Technology (Clinical Practices) Act 1988 to ensure that legislation meets the needs of South Australians requiring assisted reproductive treatment in the 21st century. The legislation governing ART in South Australia became known as the Assisted Reproductive Treatment Act 1988. This act, under section 15, provided that the minister may establish a donor conception register. However, there was no legislative obligation on the minister to do so and, as we know, nothing has happened since.

Despite the decades of discussion on the issue and calls for the establishment of a donor conception register in South Australia from all stakeholders involved in this issue, including, as I have detailed, consistent recommendations made to respective government ministers by their own advisory bodies, South Australia is still without a donor conception register in 2018. This represents a lost opportunity that seeks to be corrected by this bill.

Under the current legislation, the minister can exercise their power under section 15 of the ART Act to set up a donor conception register right now. The inaction from successive Labor governments on this issue, and the current Marshall Liberal government, is only serving to prolong the anguish of so many donor conceived people. In August this year, donor counsellor Amanda Monteith wrote to the Minister for Health and Wellbeing, the Hon. Stephen Wade, on behalf of the South Australian infertility counsellors group seeking a meeting to discuss the urgent need for a South Australian donor conception register, but no meeting was forthcoming.

I thank Ms Monteith, whom I met, and Rebecca Kirner, also a donor counsellor, who impressed upon me the urgent need for a donor conception register to be established in South Australia without delay. I thank Ms Monteith, who is here today. I sincerely thank her for raising the issue and seeking to finally achieve positive change for many donor conceived people.

The need for a donor register cannot be overestimated. There are already three jurisdictions in Australia that operate a donor conception register. They are: Victoria, New South Wales and Western Australia, each with long-established donor conception registers. These registers centralise the donor and donor offspring records from all the clinics in their respective states.

The establishment of these registers in these jurisdictions and many other places in the world marks the tide of change, as access to information by donor conceived people about their donor is viewed, increasingly, as a fundamental human right and as a means of upholding the paramountcy of the welfare and best interests of donor conceived children enshrined in the ART Act. We must act as a parliament to fulfil the paramountcy principle in the ART Act. Self-identity is important to all of us, as we seek to find our place in this world, and it cannot be overestimated. Issues of identity are more acutely felt by donor conceived people similar to people who have been adopted.

For some of those donor conceived people, there may be a stronger sense of lost identity when they are denied access to information that would shed light on their very identity. Some people are told they are donor conceived when they are young children. Others find out when they are teenagers or adults. Some are told by their parents in a loving, supportive way. Others learn at a time of family conflict or breakdown or as a result of DNA testing, which can easily be arranged over the internet in our modern age.

Many donor conceived people hold a genuine desire to know and understand more about the donor and, in turn, about themselves and their genetic relatives, including, of course, siblings. In addition to knowing about familial medical history of heart disease, diabetes, cancer, mental health issues and/or other inheritable diseases, a register could assist with early intervention and/or prevention of diseases.

Donor conceived people who are denied access to familial medical histories may be placed at increased risk as a result of not having access to vital health information, particularly later in life. The number of donor conceived people who would benefit from medical information will only increase, as medical knowledge of the influence of genes grows. The detriment that would be avoided by information sharing provides a strong case for access to information being made possible through the establishment of a donor conception register.

Another significant motivation in the search for information for some donor conceived people is the fear or risk of unknowingly forming relationships with siblings or, possibly, their donor. In a state such as South Australia, with a relatively small population, it makes the case for a donor conception register all the more urgent.

In South Australia, there are no limits on how many families can use the same donor. Donors are likely to have donated multiple times, and donors may also have donated at multiple clinics and even privately. Donor counsellors have told me of a case interstate where a donor provided gametes which resulted in 80 children being born—that is eight zero, 80 children.

The National Health and Medical Research Council's (NHMRC) ethical guidelines, to which assisted reproductive technology practitioners must adhere, do not provide a numerical limit, though the guidelines state:

Clinics must take all reasonable steps to minimise the number of families created through donated gamete treatment programs...Gametes from a single donor must be used to create only a limited number of families.

In South Australia, the current practice is reported to be 10 families. This, of course, does not prevent a donor from moving or travelling interstate to donate in other jurisdictions. I was told of a case, when I met with our stakeholders just yesterday, of a woman who had donated her eggs in three different states—not breaching the limit in any of those states but certainly surpassing the limit that applies in this jurisdiction by at least threefold, and certainly the limits that apply in those other jurisdictions as well.

The NHMRC ethical guidelines are being interpreted differently by different clinics and this is of great concern. It stands that the risk of forming consanguineous relationships would be significantly reduced if donor conceived people were able to obtain information about the identity of their donors and donor siblings available through a register. There are many reasons that donor conceived people search for information. I have outlined a few but cutting across all of them is a genuine longing for openness, honesty, an end of secrecy and anonymity, and an ability to make their own choice about whether to pursue access to information about their donor and/or further contact.

Dr Allan found that maintenance of secrecy and anonymity was shown to cause a number of people distress and the call for the government to act was noted. One such person was Kim Buck, who submitted:

I find it unacceptable that such fundamental information is deliberately withheld from donor-conceived children, and believe the government has a responsibility to act to shift the current culture of secrecy and deception towards one of openness and honesty.

Another, Ross Hunter, said in his written submission:

Reform of [the] Act has the potential to finally remove that shameful stigma, promote openness and equality and allow us to get on with our lives.

A number of submissions saw this as fundamental to upholding the paramountcy of the welfare of the child. Donors also reported wondering about the offspring they had helped to create and some have actively engaged in searching for information about numbers of offspring, the sex of offspring and/or have attempted to let the donor conceived person know that they are open to sharing information and further contact.

Another donor described to Dr Allan how he cried his eyes out when he found out that there had been children born as a result of his donation. He said he was so happy to have been able to help another family and that the recipients and children were always welcome to contact him for information. He currently receives Christmas cards from at least one of the families and letters from a father with little bits of information updating him on what has happened in their family. Another donor described to Dr Allan how he would never have donated if he was not completely open to sharing information and having contact in the future.

Of course, there are donors who do not want to be contacted and are not open to sharing information, and this is an issue that must be carefully considered by the government, with a number of existing models operating in Australia and internationally that could be followed. The issue of accessing information held by the Donor Conception Register relating to past donor conception would be dealt with in regulations and not included in this bill but would remain within the purview of the government.

While this is probably the most contentious issue surrounding the establishment of a register, there is nothing else that could possibly be seen as contentious on this issue. However, it is important to note that, while the issue of retrospective access to records may be contentious, it has absolutely nothing to do with whether or not we should actually go down that path of establishing a register. This legislation can pass and that question of retrospective access can be dealt with separately.

I will make some comments about the current situation with respect to access to information and the current state of record keeping and document storage because I think it is important that we understand the risk that we are facing in terms of these records at the moment. Under South Australia's current legislative framework, a person must not disclose the identity of a donor of human reproductive material, except as required or authorised under the act, in the administration of the act, in order to provide ART or with the consent of the donor of the material. There is a maximum penalty of $10,000 or imprisonment for six months for breaches of these requirements.

This means that, at present, people in South Australia only have access to identifying information if the donor has consented. Such consent must have been given pursuant to NHMRC ethical guidelines since 2004. Those guidelines also stipulate that records relating to donor conception are to be kept indefinitely, or at least for the expected lifetime for any person born.

Pursuant to the NHMRC ethical guidelines, to which clinics must adhere, when the information exists and the fertility clinics have access to it, donor conceived people, once 18 years old or of sufficient maturity, may access identifying information about their donor, with the donor's consent. Those born as a result of the use of gametes donated after 2004 should be able to assume consent. However, those conceived with gametes donated prior to the 2004 guidelines are presently only able to access identifying information if the donor consented at the time of donation or afterwards for release of identifying information.

It is clear, though, that the current situation, described to Dr Allan as 'a lottery', is determined by the time and place of the gamete donation or ART donor conception. In my view, it is quite perverse that some third parties could see the information sought by donor conceived people but are then able to withhold that information from them. There has been an increased call for identifying and non-identifying information globally as donor conceived people have grown. Whilst Dr Allan has found that clinics currently collect information and maintain records regarding the donor conception and adhere in principle to the NHMRC ethical guidelines, there are differing interpretations of what the guidelines require.

For example, there were reported differences in the type and amount of information collected. One clinic described extensive data (up to nine pages of information) now being held, including personal characteristics; education; whether the donor was a parent and, if so, how many children they had; motivations for donating; hobbies; interests; three generation medical backgrounds; and any other information clients wished to provide. That is a very exhaustive list. Another clinic described a focus on familial medical history and basic personal data, such as name, address and occupation—not so exhaustive. Meetings with an array of people who worked at the various clinics in South Australia were also a part of that.

A central donor conception register would streamline a lot of the information and provide consistency. A number of submitters to Dr Allan's report said that that they had experienced oppositional resistance to information disclosure. These issues provide further reasons for the establishment of a donor conception register.

Then there are issues around document management, concerning past donor conception records associated with Repromed and its original operations at The Queen Elizabeth Hospital and the University of Adelaide. There are also issues with Flinders Fertility, as these were all clinics that existed prior to 2010. The current legislation and provisions in the NHMRC ethical guidelines do not protect the rights of some donor conceived people, recipients or donors to access information because it is not the clinics that hold the information. This is particularly relevant to those people conceived at Repromed or one of its predecessors prior to 2006.

Repromed, as some members may know, has provided fertility services in South Australia over many years; however, due to the business changing ownership and place of business during this time, a situation has arisen in which ART and donor conception records are held in various locations in Adelaide, including places that do not fall under the remit of the Assisted Reproductive Treatment Act and places not governed by NHMRC ethical guidelines.

Repromed was originally operated by a group of individual doctors and researchers from the reproductive medicine unit at The Queen Elizabeth Hospital—public hospital, private providers—and in 1987 it was incorporated into a company, Repromed Pty Ltd, which, at least in later years, was owned by a subsidiary company of the University of Adelaide.

I know this is a lot of detail, but it becomes very clear why this information is particularly important. In 2006, the Repromed business was sold to a private company, Adelaide Fertility Centre (AFC), which continues to trade as Repromed. The former Repromed Pty Ltd continues to exist as a shell company, of which the University of Adelaide has been the sole shareholder since 2016.

The result of all these changes—and this is the point that I am getting to—is that The Queen Elizabeth Hospital holds some records from the mid-1960s to 1996. Records held at The Queen Elizabeth are unsorted, and it remains unclear how much information might be contained with some of those records. The University of Adelaide holds records from 1980 to 2006, including some birth outcome records, counselling records and donor codes.

AFC, trading as Repromed, holds records of their current clients and some older clients, including an electronic database that allows for the identification of some genetic siblings and donor patient cross-referencing, but this is primarily for patients from 2006 onwards. Those people conceived, or who donated or received treatment at The Queen Elizabeth Hospital or Repromed, seeking information may need to contact all three organisations to request any information that may be held about their donor conception. These difficulties would not exist if a donor conception register existed.

I provide the details of one case study that illustrates the difficulties experienced for donor conceived children who find themselves in a predicament:

Damien was conceived in 1973 at the Queen Elizabeth Hospital. He has always known he was donor-conceived (against the clinician's advice). He described his Dad as a 'lovely man who I lost at 10 years old'. At such a young age, and in such circumstances he felt he could not talk about being donor conceived for fear of hurting his mother, but in 1988 when he was 15 years old his mother requested non-identifying information from the Queen Elizabeth Hospital. She was told the records were lost.

At 19 years old Damien had a health problem and his treating immunologist suggested he try to find more information about his medical history. He contacted the Queen Elizabeth Hospital again, and that time was told the records had been destroyed. He later spoke to Repromed, who referred him for counselling, but no information was gained.

He said that the next time the desire for information really struck him was when he had children of his own. He described how holding his newborn daughter made him think about how much he loved her and how much it would devastate him if she didn't know who he was. He said that although everyone would recognise that he is her father, they didn't recognise his need to know about his biological father. His mother then made a Freedom of Information application for her treatment records, which she was given. The records had a donor-code and said Damien had been born from frozen sperm.

Damien has since spoken to Adelaide University, the Queen Elizabeth Hospital, Repromed and State Records, but still only has a donor code. He describes feeling like he and his mother were lied to. He also described wanting to know how many siblings he has, and having spent around $2000 trying to find information via doing DNA testing. He appealed during the donor conception forum, 'It has been nearly thirty years that I have been treading this path. Somebody has to help'.

The situation of records being all over the place is only compounding the anguish and despair for donor conceived people like Damien. In addition, donor conceived people are having to deal with legal and/or administrative officers at these sites who have no expertise in dealing with such complex issues, and often little or no counselling whatsoever is offered to these individuals.

In the case of records held at ACN, the General Counsel of Adelaide University noted that, as a shell company, ACN has no employees and does not have the resources or expertise to offer support to those seeking information.

State records guidelines have also changed so that information will be kept for up to 99 years, and without laws to preserve the ART records at CAN, at the University of Adelaide and at The Queen Elizabeth Hospital these records are not required to be maintained under the current legislation as they do not fall within the definition of a registered provider of ART. This bill seeks to remedy that situation in our law so that records held at these locations must also be preserved in perpetuity. Issues were also raised during Dr Allan's inquiry about past records held at Flinders Fertility, one of the older fertility clinics predating the current legislation and still operating to this date.

As the current legislation with respect to a possible donor conception register does not apply in relation to ART provided before the commencement of the legislation, it means that past records held at Flinders Fertility that predate the current legislation do not require preservation and, in fact, there are instances of donor conceived people making inquiries at Flinders Fertility being told their records have been destroyed. This is manifestly unfair, and this bill also seeks to correct this situation or this loophole so that the relevant section applies in relation to ART provided before or after the commencement of the operative provision.

As I have outlined, a donor conception register is preferable to clinic-based access or ad hoc access at other locations where historical records are held currently, as it will provide for access in one central location, consistency of practice and security of data. The four operational clinics have indicated in discussions with Dr Allan that 60 to 100 donor conceived people are being born per year. That is 60 to 100 donor conceived people each year. According to Dr Allan, there are several hundred files relating to historical donations being held in several locations across Adelaide that absolutely have to be collected and collated.

The ACN (Adelaide University), the primary location that has partial information about past donor codes, told Dr Allan that they hold a birth outcome spreadsheet that estimated approximately 1,000 births from 1980 to 2003. The Queen Elizabeth Hospital holds records relating to recipients dating back to the 1960s. Often they need to gain some information from their records and then send the person to CAN and Repromed to follow up on a donor code. The inquiring person—usually a donor conceived person—gets shunted from one place to the other.

The number of past records held by Flinders Fertility is unknown, with the clinic reporting to Dr Allan that some records had been destroyed and cannot be recovered and that some records still exist. By comparison, there were 10,042 births on the Victorian central donor register to 30 June 2018. The Victorian central register has been operating since 1984, and I note that there were 623 donor births registered in Victoria in 2017-18, and there were 82 applications for information to the donor register for the same year.

The information from Victoria, as an example, is clear because of the existence of a central donor conception register. With increased use of donor conception by single women and same sex couples, it is likely that there will be consequent increases in donor conception. On the issue of where the donor conception register should be held, Dr Allan said:

Births, Deaths and Marriages already collects and manages data relevant to births and parentage. BDM maintain the birth register and issue birth certificates.

In discussions with Dr Allan, BDM confirmed that they have the capability for external operators to upload information, and that hospitals and funeral services already do this now. In addition, BDM also noted that they can engage in linking records, and they already do this now with respect to births and with respect to deaths.

In addition, RASA is a trusted partner agency with BDM, providing counselling services and can access records directly to facilitate family tracing and linking services. Professor Allan did consider locating the donor conception register within the Department for Health and Wellbeing, either within the Epidemiology Unit, which houses the Pregnancy Outcomes Unit, or within another unit within that department.

However, these were discounted because, in considering establishing the donor conception register within one of these, Professor Allan was of the view that neither unit was observed to work in a manner that is akin to services needed for a donor conception register. The reasons included that the Pregnancy Outcome Unit does not provide individual data release services, and, whilst the unit provides information regarding birth outcomes and complications, the unit has very strict privacy provisions.

The internal unit option was observed by Dr Allan as being staffed by a small number of personnel without any expertise in establishing or maintaining a donor conception register that would hold information about biological parentage or, indeed, that could provide support services to facilitate family linking. BDM was considered the superior option, given its staff already possess the necessary data management expertise, records are securely stored in perpetuity, staff are already experienced in handling public inquiries about information release regarding genetic heritage and birth, and its work with other agencies to assist access to such information and family linking.

The only jurisdictions that adopt a stand-alone model for a donor conception register globally are the United Kingdom Human Fertilisation and Embryology Authority and the Victorian Assisted Reproductive Treatment Authority. Ultimately, Dr Allan determined that a stand-alone model for South Australia was not appropriate, taking into consideration the size of the state and population that will be served by the donor conception register, coupled with the fact that relevant services that could be leveraged exist in South Australia. These were all considered in determining that Births, Deaths and Marriages is best suited to maintaining the donor conception register.

By locating the register with BDM, access to information concerning a person's birth, biological and legal parentage would occur in one location. It would enable the use of existing expertise, resources, practices and process in South Australia and would minimise donor conceived children from being treated differently from all other South Australians seeking information about their legal and/or biological parents. The bill gives effect to this recommendation by Dr Allan.

Past records held in various locations must be transferred to a central location for sorting and relevant information entered onto the donor conception register. The inordinate delays by former and current governments in failing to act in setting up this register is causing continued frustration and psychological distress to donor conceived people, recipients and donors alike. The operation and effectiveness of the Assisted Reproductive Treatment Act has been compromised by the delay in establishing an essential donor conception register to record and release information about donor conception. That significant delay, now decades overdue, is not in harmony with upholding the paramountcy of the welfare of the child principle in the current legislation.

On the issue of the paramountcy principle in the ART Act, the bill amends section 4A to include the word 'health' in conjunction with 'welfare' to give effect to recommendation 16 of Dr Allan's report, thereby seeking to strengthen the paramountcy principle. On this point, Dr Allan stated, and I quote:

The current statement of principle does not explicitly include reference to health outcomes for the child. It was submitted to the review by Robinson Research Institute, that: the absence of a reference to health may now be regarded as an omission…the statement of principle should include wording that both the 'health and welfare' of the child is paramount.

I note, by way of comparison, that the Victorian legislation also includes a paramountcy provision that includes reference to the health and wellbeing of the child.

In summing-up, I concur with Dr Allan that, on balance and for clarity, it would be prudent to add 'health' to the current paramountcy provision within the act. I have done that in this bill. Finally, I note that, given that we will soon be debating changes to surrogacy laws—and I commend the Hon. John Dawkins for all his invaluable work in this area and on this most worthy issue—it is also timely that we finally deal with the establishment of a donor conception register.

SA-Best therefore calls on the Minister for Health and Wellbeing to establish the register as a matter of urgency. The bill will ensure that the minister does just that. We are happy to work with the government to finally achieve the establishment of a donor conception register and provide solace and certainty to the thousands of donor conceived children in South Australia.

Debate adjourned on motion of Hon. I.K. Hunter.

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