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Legislative Council - Fifty-Fourth Parliament, First Session (54-1)
2019-10-16 Daily Xml
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Bills

Assisted Reproductive Treatment (Review Recommendations) Amendment Bill

Second Reading

Adjourned debate on second reading.

(Continued from 5 December 2019.)

The Hon. I. PNEVMATIKOS (15:55): I rise to indicate that I will be the lead speaker for the opposition and that the opposition gives its wholehearted support to this bill. I have spoken previously in this place about the importance of focusing upon one's health and wellbeing and the positive impact it can have. An important factor that contributes to this is one's knowledge of the history of health issues their family has dealt with, which allows that person to be more aware of the risks they have in regard to developing the same problems.

It improves the communications we have with health professionals and can contribute greatly to proactive treatment before a condition becomes a problem. Unfortunately, not all South Australians have open access to learning their genetic history to be able to be proactive with their health. Donor conceived children are one example of a group who are disadvantaged in this area and unable to access any information regarding their lineage.

Currently, there is no public central register of donors of gametes and embryos. This puts us behind Victoria, Western Australia and New South Wales, who have operated central registers for a considerable length of time. The system as it stands is complex, difficult to navigate and more often than not the information is simply not available.

It is a matter that has been investigated and debated in our state for more than 30 years, with calls for improved and more cohesive access to information, and it is why the Weatherill Labor government oversaw a review into the Assisted Reproductive Treatment Act in 2017, conducted by Dr Sonia Allan, Associate Professor of Health Law at Deakin Law School, who has over 20 years' experience in legal and health policy. We are very honoured to have her in the gallery today.

This bill is a bill that will address the issues and is an important step towards placing safeguards to prevent possible genetic factors in playing a negative role on a child. For that, I thank the Hon. Connie Bonaros for introducing this bill.

Dr Allan's review of the current process of donor data collection in South Australia across various clinics revealed inconsistencies in data collection, inaccuracies, misplaced records and extreme difficulties faced by donor conceived people attempting to access this information, even where the donor's consent was given.

The lack of a central register and subsequent difficulty in accessing information has caused both psychological and physical damage for donor conceived people, which Dr Allan details in her report. She outlines the impact on donor conceived people's sense of identity; a lack of access to familial medical history which may assist in risk identification and disease prevention; concerns regarding the risk of donor conceived people unknowingly forming relationships with siblings, or possibly donors, and the psychological effect of donor conceived people feeling they must be wary of accidentally forming such relationships; and a lack of openness, honesty and equality of information.

The review analysed the ethical, social and legal issues that have been raised and debated in relation to assisted reproductive treatment locally, nationally and internationally. It found that there was significant interest from donor conceived people, recipient parents and donors for the establishment of a central donor conception register. We provided our response to Dr Allan's review in November 2017, supporting the vast majority of the recommendations made, including the establishment of a donor conception register.

I am disappointed that, since that time, with the Marshall government coming into power, there has been inaction for well over 18 months. They have done absolutely nothing, leaving the donor conceived community waiting. Dr Allan understandably has expressed frustration with the lack of progress on her review recommendations from the Marshall Liberal government. She wrote to the shadow Minister for Health back in February this year, indicating her disappointment at the government's inaction on this important issue. She noted that, at the time of delivering her report in 2017:

I stated such matters needed to be addressed as a matter of priority. Some two years later it would be more beyond the time to introduce them. I cannot stress to you enough the disappointment that will ensue if this opportunity is lost. The current government's lack of follow through has been disappointing, to say the least. I really would like to see the rest of parliament seize the opportunity to make them act, to finally serve the interests of donor-conceived people, their families and donors, who have been waiting for so long for the establishment of a donor conception register.

The bill before us aims to implement six recommendations arising from the Allan review, largely to establish a donor conception register, protect records and establish the Registrar of Births, Deaths and Marriages as the holder of information rather than the minister.

The establishment of a centralised donor conception register will provide donors, donor conceived children and recipient parents a reliable source of easily accessible information moving forward. We note that the more complex details surrounding the potential retrospective application of the donor register, and how to manage donors who are not open to sharing information, are to be further worked through via regulation. Taking into consideration section 4A of the Assisted Reproductive Treatment Act 1988, South Australia, the act provides that:

The welfare of any child to be born as a consequence of the provision of assisted reproductive treatment in accordance with this Act must be treated as being of paramount importance, and accepted as a fundamental principle, in respect of the operation of this Act.

We have a responsibility to improve regulatory oversight and transparency in this area. The best interests of a child is paramount. Accordingly, we should all support amendments that improve the chances of a child's health and wellbeing.

I conclude by noting that the opposition wants the government to go well beyond just supporting the bill before us today. We want to see the government implement a broader list of recommendations arising from the Allan review, many of these requiring non-legislative change that can only be actioned from the position of government. The donor community has waited long enough.

The Hon. T.A. FRANKS (16:03): I rise on behalf of the Greens to support the Assisted Reproductive Treatment (Review Recommendations) Amendment Bill 2018. Whilst this is a bill before this current parliament, it is not an issue that is new to this parliament. Indeed, the concept of a donor registry has been supported time and again through various committees, recommendations and in law. Unfortunately, that support has found a loophole with the wording that the minister 'may'. We will ensure, hopefully today, with these parliamentary processes that the minister 'must'.

This is not the first minister who has not been able to progress the donor register. I note that this debate actually goes back well over a decade. A former minister, Lea Stevens, noted in the early 2000s that 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 had been drafted and that she hoped to be able to progress the initiative as soon as funding became available.

My point today is that we can no longer see the political will of the parliament affected because the funds cannot be found. This issue is too important to let languish any longer and I hope that, by our support of this in the council today, we make it clear to this government what should have been clearer to and done by previous governments. It is certainly not the fault of the most recent minister that this was not done on the many other occasions that it could have been done, but today I hope that the parliament will make it loud and clear that it must be done.

I also note the addition of a very important provision in this bill regarding the welfare of the child to ensure that both the health and the welfare of the child who was born as a result of ART is paramount. Those health considerations are something that should be afforded to those people who have been conceived by donor. Not all of us know our parents, not all of us get to choose our parents, but where that information is available the child should be afforded that information in whatever way we can facilitate.

I never knew my biological father. I know who he was but I had very little information about my paternal lineage. As I have got older, some relatives have provided missing parts of that information and now that I am in my 50s it has certainly been a great revelation, many decades after I was first searching and seeking that information. We do not all enjoy the ability to access that information but where we can we should make sure that those people who wish to are able to understand their identity and, particularly with regard to health concerns, have the ability to protect their children and future generations as well as their own personal health where that is able to be accessed.

The bill also ensures a better provision to ensure that records will not be destroyed, that records will be able to be accessed and that records will not only be collected and kept in appropriate ways but kept and collected by people with appropriate expertise in these very delicate situations that we find in this modern day.

With those few words, I commend the Hon. Connie Bonaros for bringing this before the parliament. Our parliament in South Australia has made it loud and clear again and again and again that we support the concept of a donor conception register. I hope that our words today will ensure that this time it is given the political will and the funding that is required to make it happen.

The Hon. S.G. WADE (Minister for Health and Wellbeing) (16:07): I rise today to speak on behalf of the government on the Assisted Reproductive Treatment (Review Recommendations) Amendment Bill 2018. As Minister for Health and Wellbeing, I would first like to acknowledge the donor conceived South Australians searching for their genetic heritage, including those who are present with us today. I recognise that knowing one's genetic history is a right and integral to the development of identity. Knowing one's family health history can prove critical in many circumstances. I appreciate the honourable member's good intentions in bringing this bill before us today in response to the experiences of donor conceived Australians.

I also acknowledge the review of the Assisted Reproductive Treatment Act 1988 by Associate Professor Sonia Allan OAM that I am advised was finalised in January 2017. I met with Associate Professor Allan to discuss her report in June 2018 and again thank her for the expertise and passion she brings to this issue and recognise her recommendation for the establishment of a donor conception register.

While Associate Professor Allan's report was tabled by the former Labor government on 11 April 2017, the government's response to the report was not tabled until the dying days of the former government, almost eight months after they first tabled the report. The issue has been a matter of public debate or concern for two decades, and I acknowledge the observations of the Hon. Tammy Franks in relation to that history.

Many donor conceived people in South Australia, prior to regulatory requirements coming into place, face considerable barriers to accessing details about their genetic parentage, including details of their donor and any other siblings conceived through the same donor. The establishment of a donor conception register would provide donor conceived people the same right to information about their genetic parentage as those conceived naturally.

I support the right of donor conceived people to have access to their genetic history. However, the government cannot support the bill before us as being the most appropriate next best step. I support the principle but not the bill. The bill aims to force the establishment of a donor conception register. The bill seeks to change responsibility for the establishment and ongoing operation of the register from the Minister for Health and Wellbeing to the Registrar of Births, Deaths and Marriages. The establishment of a DCR requires a range of tasks to be undertaken prior to operation commencing, and it is not possible to achieve this in four months. It is the government’s view that amendments to the act should be done all at the same time to maintain the integrity and functionality of the act.

Further, the bill specifies that the register should be established within four months. This requirement is impractical and would not allow sufficient time for the tasks necessary to establish a DCR. This is particularly the case with the records from the clinics operating prior to 2004. Due to changes in ownership, records that have not been well maintained, locating and sorting records will take a substantial period of time. These are the circumstances I have inherited as the Minister for Health and Wellbeing.

Although the bill, as I have acknowledged, is well intentioned, the establishment of the register will be complex and must be done in a careful manner. For example, there are specific sensitivities related to the retrospective changes which will allow for release of identifying information about donors who had donated prior to 2004 on the condition of anonymity, as was previously standard practice within the industry. This bill does not have a contact veto option, and I think that is problematic since a DCR is applying information mining retrospectively.

As I have said, the government is not in a position to support this bill today. I do, however, assure the council and the South Australian community and particularly South Australians conceived by donor conception that I am actively looking at options to pursue the establishment of a register in South Australia. This is an area of need for both the health and the wellbeing of donor conceived South Australians.

The Hon. C. BONAROS (16:12): Can I start by thanking the Hon. Irene Pnevmatikos, the Hon. Tammy Franks and the Minister for Health and Wellbeing for their contributions today. To suggest that I am disappointed with the government's response is very much an understatement. The minister would be well aware that this bill has been on the Notice Paper for months and months. In fact, I think I have given notice of this at least over eight months ago. To suggest I am disappointed, again, is an understatement.

The issues that the minister has raised could well have been addressed by way of amendment, particularly in relation to the four months. The minister would also be well aware that the reason we would insert a period into the bill is to ensure that we are clear that we would like this dealt with in a timely manner. Had any discussion taken place with us in relation to that time frame, then that is something that obviously we would have been open to addressing.

I have to disagree with the minister in relation to the point that he made about this bill not covering issues of access, because what we all know, and what we know clearly even from the forum that was held in this place earlier today, is that without a register nothing else can happen. The intent of this bill was to establish a register where all the data that exists on an ad hoc basis could be collated and kept together by one central government agency. I do not know what lengths individuals who work in this sector and donor conceived children and their families have to go to get that message through to the government.

I completely acknowledge that you have not had the benefit of time like the previous government in terms of dealing with this, but there certainly has been a long time to consider the bill before us. I made it abundantly clear in my second reading explanation that issues of access are not going to be canvassed in this bill because before we even get to address issues of access we need to establish a register. That is entirely consistent, I think, with the recommendations of the Allan review, and it is entirely consistent with the views that were expressed even today at the forum that took place on this issue.

Once again, for those reasons and a thousand others, which do not impact me personally but impact the lives of hundreds of others personally, I am extremely disappointed that we could not use this as an opportunity to take a first step, after what has been decades of not addressing the issue of establishing a central agency and doing away with the ad hoc nature by which we keep records at the moment. The reality for many donor conceived children is that they do not have months or years to wait. The reality for many of them is that time is running out to find out any detail regarding their biological history and background.

I am disappointed, frankly. I am somewhat heartened by the indication you have given that work is being done on this, but I maintain my position that the best way of approaching this issue is ensuring that we have a register that is maintained by a government agency. That will serve as the platform, if you like, for the remainder of the issues that need to be considered in the context of donor conceived children, who, by the way, we have always treated as second-class citizens compared with other children simply by virtue of the fact that they do not have the same level of access to records concerning their birth as any other child in this state or other states would have.

Again, I am disappointed, but I am pleased that the majority of this chamber sees fit to pass this bill today. I can assure the minister, and I can assure everybody here today, that I will not be letting this go. On that note, I would like especially to thank the shadow minister for health, Mr Chris Picton, who is sponsoring this bill in the lower house and who I will continue to work with closely on this issue in the hope that we can get the government to see sense.

The issues that have been raised by the minister can be addressed by way of amendment, so I am in fact pleading with the minister to come to the table and have those discussions with us to ensure that we can get over the first hurdle and establish a register. Everything else can follow after that. I made a rather lengthy speech at the start of the second reading stage. I will not reiterate what I said during that but, as we know, the issues surrounding this issue are complex. The establishment of a donor conception register is the first step in addressing those very complex issues.

I want to use this opportunity now to acknowledge a number of very important people who have been crucial in getting to the point where we are today, at least in the passage of this bill in the upper house. I want to start by thanking Amanda Monteith, who was here earlier today. She is a donor counsellor who approached my office a year ago and made an impassioned plea, providing compelling and persuasive arguments for the establishment of a donor conception register in South Australia.

I want to thank Damian Adams and Katharine Dawson-Vowels for meeting with me to discuss the bill and for completely opening up and giving a very raw account of their personal histories, for sharing their frustrations and anguish at the lack of access to information and the impact that has had on their lives and those of other donor conceived children just like them. In fact, I want to thank all the donor conceived people who came to the Q&A forum today, for sharing their very personal and raw stories. Each of their stories is unique and poignant, and every account we have heard from them bolsters the need for a conception register in South Australia.

I particularly want to thank Dr Sonia Allan, also here today, who flew from Melbourne to witness the vote, who has also engaged enthusiastically with my office and with the bill by providing her thoughts, advice and assistance on a bill which I think it is fair to say she agrees goes a long way towards addressing the issues at hand today. It is to her we owe a great debt for providing such a detailed and forensic analysis of the Assisted Reproductive Treatment Act, as she was tasked to do by the previous government, tracing the history of ART legislation in this state and making the comprehensive case for the urgent need for a donor conception register in South Australia.

As I said earlier today in the forum, it is every human's fundamental right to know their genetic mother and father, if they so choose. For the majority of us, the answer is as easy as asking our parents and it is something we take for granted. But sadly, for others, but especially for those donor conceived people, the task is virtually impossible and has led to hundreds of people unnecessarily suffering decades of anguish and uncertainty, not knowing the answer to a question that most of us take for granted.

For me, it beggars belief that in 2019 these draconian laws still exist, despite successive governments agreeing to a donor conception register for close to two decades now. The bill that I introduced had the simple aim of bringing us out of the Dark Ages and into the 21st century and in line with what other states have done in terms of establishing a similar register. The need for such a register here cannot be overstated and I am sure we all agree that South Australian donor conceived people have waited long enough. It is them I am focused on today, not on recrimination or blame as to why it has taken so long, for the very reasons that have been outlined by the Hon. Ms Franks.

Finally, I note that we will soon be debating the Surrogacy Bill in this chamber after it passed the lower house and I commend the Hon. John Dawkins for all his invaluable work in this area on this most worthy issue. It is also timely that we finally deal with the establishment of a donor conception register. I am pleased the bill is going to pass our chamber today because I think it represents a crucial step in the establishment of a register in South Australia but I am extremely disappointed with the response that has been provided by the government. If I give one commitment today in this place, it is that I will keep at it until we get a much better response from this government.

Bill read a second time.

Committee Stage

In committee.

Clause 1 passed.

Clause 2.

The Hon. T.A. FRANKS: This clause states that the act will come into operation four months after the day on which it is assented to by the Governor. I take it that the mover would believe that that assent would come after it passes the other place and therefore has much more time than a simple four months where the government could perhaps negotiate with the mover of the bill in the other place to make that time frame manageable. Would that be the mover's opinion?

The Hon. C. BONAROS: That is absolutely my opinion. We have said four months after the day on which it is assented to by the Governor, but obviously, as the member has alluded to, there is ample room within that for us to work out any logistics in terms of the bill but also, if need be, to extend that time frame to ensure that there is ample time for whatever needs to be done for the bill to become operational.

Clause passed.

Remaining clauses (3 to 8) and title passed.

Bill reported without amendment.

Third Reading

The Hon. C. BONAROS (16:28): I move:

That this bill be now read a third time.

Bill read a third time and passed.

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