ASSISTED REPRODUCTIVE TREATMENT FURTHER AMENDMENT BILL 2013
Ms GARRETT (Brunswick) — On behalf of the opposition I rise to lead the debate on the Assisted Reproductive Treatment Further Amendment Bill 2013. I note that Labor will not be opposing this legislation.
Donor-conceived people having access to information about the identity of their biological parents is an issue that has become very close to my heart and is certainly close to the hearts of my colleague the member for Ivanhoe and others in this chamber who have worked tirelessly on this matter.
It has been a privilege and a responsibility for us to have been on a small part of the journey of the many fine people we have met, some of whom are in the gallery — people who either donated or were conceived as a result of donor conception prior to the legislative change in 1998 that required all donors to be identifiable.
From the outset of this contribution I state again in the clearest possible terms Labor’s position and principles on this matter. We support a person’s right to access information about where they come from. We support all donor-conceived people having access, as of right, to identifying information about their donors regardless of when the donation occurred.
We believe that the current three-tiered system of access to information under the Assisted Reproductive Act 2008 is unfair.
We believe that the two-tiered system of access to information that the government proposes here today is unfair. We believe that access to donor information should be consistent no matter when somebody was conceived. We believe that the unanimously endorsed recommendations in the Law Reform Committee’s report on its inquiry into access by donor-conceived people to information about donors, which was released in March 2012, should be implemented in full, and we are deeply disappointed that this bill continues to enshrine inconsistent laws that apply to the donor-conceived community.
As members of this house will be aware, there is a long history to this piece of legislation. The Law Reform Committee first received its reference for this issue from the Legislative Council on 23 June 2010, more than four years ago, and this issue has been examined by law reform committees over two Parliaments.
On 15 September 2010 an interim report was tabled by the committee of the last Parliament. The final report was presented to this Parliament on 28 March 2012. The government tabled an interim response on 11 October 2012, in which it stated that it would be a further six months before its final response was presented and that this time would be used to conduct further research into the views of donors.
This of itself caused considerable consternation in the donor-conceived community, the members of which once again quite rightly felt that only the views of donors were being heeded and that they were being treated as invisible and their views ignored.
On 26 June 2013 the Labor Party introduced the Assisted Reproductive Treatment Amendment (Access by Donor-Conceived People to Information about Donors) Bill 2013 in the Legislative Council, known as Narelle’s Law, which I will discuss in detail later. The bill was second read but not debated further. The government’s final response to the Law Reform Committee report was tabled on 20 August 2013 and the member for Ivanhoe made detailed comments on this response in this place on 21 August of that year.
The government gave its second-reading speech for the Assisted Reproductive Treatment Further Amendment Bill 2013 on 11 December 2013, but we are only now debating this bill, some eight months later. The government should apologise to Victorians for this delay and for what constitutes a dismissive attitude to an issue that has a great impact on many Victorians.
There are currently three groups of donor-conceived people in Victoria, each with different rights under state legislation based on when gametes used in their conception were donated. A person conceived prior to 1 July 1988 has no rights to any information about his or her donor. There was no legislation in operation at that time, and donors were promised anonymity by medical staff. Until now the legislation has not changed that situation.
A person conceived between 1 July 1988 and 31 December 1997 can access identifying information about his or her donor if the donor consents, but if the donor refuses to give consent or cannot be located, the donor-conceived person can only obtain non-identifying information. A person conceived from 1 January 1988 has unconditional access to identifying information about their donor once they turn 18. From that time donors were required under legislation to consent to make identifying information available.
The shift in this legislative framework over time reflects the changing attitude to one that accepts that donor-conceived people should have the right to information about their genetic heritage. No-one is suggesting that the practices of secrecy and anonymity that prevailed in the 1970s and 1980s were done with malice; quite the opposite is true. Doctors were altruistically pioneering techniques to assist childless couples to achieve their longstanding dreams of children, dreams that often involved very anguished journeys.
Donors were also playing a noble role, believing they were doing their part to help others. The couples who participated in these programs did so with love in their hearts and are eternally grateful for their results.
I think it is worth noting at this time that issues such as these are ongoing in our community. We are seeing reports daily of new techniques and pioneering approaches to assist couples who are having trouble conceiving, and these programs now have global reach. We have eggs donated from South Africa, sperm donated from California and surrogates being used — and we are seeing some of the tragic consequences of surrogacy today. It is timely to remind ourselves in this house that, while these approaches are designed to help anguished people have children, we must pause and learn from the mistakes and lessons of the past, as we have learnt here. The changes in the legislative framework demonstrate that this community decided that the approach adopted for this issue back in the 1970s and 1980s was the wrong approach.
The committee heard from dozens of witnesses and was unanimously persuaded that donor-conceived people, regardless of when they were conceived, should have the right to know their biological heritage. This position is not necessarily where the views of all members of the committee start. I commenced my involvement in the inquiry thinking that those who had been promised anonymity should have that anonymity protected. However, the testimony we heard from many people — from children, parents and donors — was compelling, and I will be referring to much of it throughout this contribution.
The key issue for all of us on the committee was balancing the rights of the donors with those of the donor-conceived children, and no-one approached this not understanding that it was a most significant and solemn task. An extract from page 75 of our report captures well the deliberation processes and the outcome reached:
- The committee notes that all donors were legal adults at the time they provided gametes. Thus, all donors were able to consider possible repercussions of their actions, including the effect on third parties (such as any offspring, or their future families, for example), prior to consenting to participate in the donor programs. Donor-conceived children were not, of course, afforded the opportunity to consent to this process.
- One of the key observations for the committee while considering the relative rights of donors to anonymity, and of donor-conceived people to information, was that while donors may experience distress from the release of identifying information, that distress will flow from decisions … made as a legal adult.
- The distress experienced by donor-conceived people, by contrast, flows from decisions that were made by other people, through no fault, and by no agreement, of their own … discovering that one is donor-conceived can be a confronting and traumatic experience … due to the trauma that such a revelation can inflict, the committee believes the state should have a role in assisting a person to overcome trauma.
Accordingly, as this house knows, the Law Reform Committee made several recommendations, including that all donor-conceived people should be allowed to obtain identifying information about their donors and that legislative change should occur to give effect to that recommendation. It also recommended that legally enforceable contact vetos be put into place to ensure that those donors who did not wish to have ongoing contact with any offspring they had created would be able not to do so. We also considered issues around access to identifying and non-identifying information about donor siblings and made very comprehensive recommendations regarding records, central agency record keeping and counselling around those people affected by this very serious issue.
In his foreword to the report, the chair of the committee, the member for Prahran, stated:
- The committee believes that providing all donor-conceived people with the opportunity to access identifying information … regardless of their date of conception, is consistent with the first guiding principle found in the Victorian legislation regulating donor-conception — that the welfare and interests of persons born as a result of assisted reproductive treatment procedures are paramount.
- It is also consistent with comparable situations, such as adoption, where Victorian legislation retrospectively allowed adopted people to access identifying information about their birth parents.
We agree with the statement, which is why it is so profoundly disappointing that this bill does not fully implement the recommendations of the report. Of course this is not just an issue for donor-conceived children. It is also in issue for the donor. Again, I note the presence of donors in the gallery today who have worked tirelessly to assist donor-conceived children and indeed to further their own ideas about knowing their biological connections with people. I note in particular that Ian Smith is with us today. He said in a very moving piece he wrote after the publication of our report:
- I know I am the biological father of nine children. Two of my offspring live with me. Seven — offspring from my sperm donations — I have never met.
- I’m married now, I have children and I can see before me the whole process of the development of a person who is the sum of so many genetic and familial influences.
- At times I feel quite anguished that I have seven other children who carry a part of me and my genetic and family background but over whose lives I have no direct influence.
- I wonder if they are alive, if they are healthy, happy, well cared for and loved.
As stated earlier, there are currently three groups of donor-conceived people with different rights, and access to information by those people is currently regulated by part 6 of the Assisted Reproductive Treatment Act 2008.
The lack of proper protection and/or access to records from clinics such as Prince Henry’s Institute or from individual doctors has been a source of deep concern and distress for the donor-conceived community. The bill we are debating provides that people conceived before 1988 be treated in line with people conceived between 1988 and 1997, but, as stated repeatedly, this simply does not go far enough.
The Labor opposition has sought to make amendments to this bill and have it considered in detail by the house. However, that has been refused by the government on the grounds that it is a complex piece of legislation and the responsible minister is in the upper house.
I am not sure what this says about the confidence the government has in the Minister for Community Services, but given she managed the adoption law reform process I suspect the refusal has more to do with ducking the hard questions on why the government has failed this group of people than the capacity of the minister to handle herself in a consideration-in-detail stage.
In fact the minister spoke very movingly and passionately about the adoption law reform and the apology that was offered during this term of government. It was a profound event that all members were proud to be part of. Significant changes were made to respect the rights of those affected by practices of the past that are now recognised to be wholly and utterly inappropriate. As we debate this bill, I remind those opposite of that apology and those changes that they embraced with respect to adoption.
It is impossible to see how there is any difference between the needs for information for people who have been adopted or given babies up for adoption and those of donor-conceived people or sperm donors.
Lauren Burns, who has been an extraordinary advocate for the rights of donor-conceived people to know their genetic heritage, spoke of this very issue in the Sunday Herald Sun of 31 March 2013. She was referring to then Prime Minister Gillard’s national apology to those who had suffered forcible adoption.
The article quotes Prime Minister Gillard as saying:
- To each of you … who were denied the opportunity to grow up with your family and community of origin … we say sorry. We acknowledge that many of you still experience a constant struggle with identity, uncertainty and loss, and feel a persistent tension between loyalty to one family and yearning for another.
Lauren Burns is quoted as saying:
- It was frustrating that almost nobody except us could see that by simply inserting ‘donor conception’ for ‘adoption’ the PM could have been speaking to us.
This government should not entrench the current disadvantage suffered by donor-conceived people but should seek to remove it.
There is no more compelling reason to implement the recommendations of the Law Reform Committee report in full, rather than the modest changes that this bill contains, than the journey of Narelle Grech. We first met Narelle in 2011 when she appeared several times before and at the committee hearings. She was a feisty, passionate, creative and beautiful soul. Narelle was conceived through anonymous donation prior to 1988 and did not have the same rights afforded to other donor-conceived people born after the act came into effect in 1984. Narelle found out about her conception as a teenager and spent 15 profoundly distressing, frustrating and demoralising years trying to find out the identity of her father.
I want to relate the evidence given by Narelle Grech to the Law Reform Committee, which I still remember. She said:
- I’ve been actively speaking out about donor conception for a number of years, and it’s taken its toll on me emotionally and within my family. It’s personally quite taxing to have to recount my story and to have to plead for information that I feel I should already have. The lack of control around this is very disempowering, the secrecy and withholding of information about who I am and my conception leads me to feel like a second-class citizen. I believe that the truth will set me free, so to speak, and I ask for access to my records for this reason. I want answers so that I can move forward in life without these feelings of loss and grief and I don’t think anyone should have to endure this, especially when the records do exist. And I do know that my records exist.
Narelle also told the committee that she had been diagnosed with advanced bowel cancer. It was a tragic revelation that touched us all very deeply. It touched the then Premier, the member for Hawthorn, and to his credit he facilitated Narelle gaining access to the information that she had desperately craved for so many years — the name of her biological father.
Ray Tonna and Narelle were united for the first time in early 2013. As reported in the Sunday Age of 17 March 2013, Narelle said of their first meeting::
- It was amazing … There was an instant connection — how could there not be?
Mr Tonna said:
- It’s like this psychic switch went off in my heart, my mind, my soul. I hadn’t seen her for 30 years; I wasn’t even aware of her, and suddenly she’s there.
- I just love her so much.
When asked whether the law should change Mr Tonna said:
- Absolutely. This is a basic human right. For any politician to stand there and deny it is abhorrent.
Most poignantly, Narelle said in this interview:
- The thing that strikes me the most is that Ray expressed to me that, had he been given the opportunity to meet me 15 years ago, he would have been just as eager then as he is now.
- Of course, I’m appreciative that I can know him now, but to think we could have had another 15 years of getting to know each other is so bittersweet.
Narelle Grech died two weeks after that interview. She was 30 years old. These words of hers, and those of her biological father, stand loud and clear in this chamber — and we owe it to her to listen.
We on this side of the house did listen. Last year a member for South Eastern Metropolitan Region and shadow Minister for Health, Gavin Jennings, introduced a private members bill in the Legislative Council to give effect to Narelle’s law to assist all donor-conceived persons in pursuing their sense of identity and connection and to allow for more positive reunions such as that which occurred, all too late, for Narelle and Ray. The bill was designed to be consistent with the guiding principles of the Assisted Reproductive Treatment Act and was particularly influenced by the principle in section 5(a) — that is, that the welfare and interests of persons born as a result of assisted reproductive treatment procedures are paramount. The bill was also completely consistent with the bipartisan report of the Law Reform Committee.
Unfortunately that bill was defeated. It is even more disappointing for those on our side and those in the donor-conceived community that once again the recommendations in the Law Reform Committee report are not being implemented today as only modest changes are being proposed in this bill.
Clearly the emotional need that most people have to understand their family heritage should be paramount in our consideration of this issue. But there is another reason donor-conceived people should be able to access information about their genetic heritage. Narelle Grech died last year at the age of 30 from bowel cancer, and it is highly likely that her genetic heritage made her susceptible to the disease. She had eight half-siblings, all fathered by the same donor, who could potentially carry that same fatal gene. Over the past 30 years our knowledge of and ability to treat genetically acquired medical conditions have improved at a rate that would have been difficult to imagine at the time those donations were made.
Labor believes that donor-conceived people have the same right as every other Victorian to have access to information that could help them prevent or treat a genetically acquired medical condition should they so wish.
This bill does not allow for that right to be exercised in absolute terms, and in doing so, as others have put it so much more eloquently than I can, it creates a kind of second-class citizenship for this very significant group of people. The bill goes some way to addressing issues of access but, as I have said, it does not go nearly far enough. I note in particular the changes made by this legislation to record storage, management and access, particularly around the records relating to the now defunct Prince Henry clinic where Narelle was conceived.
Clause 9 of the bill inserts a new section 56A into the act. It provides that in certain circumstances the registrar may access and disclose information held by the Public Record Office relating to pre-1988 donor treatment procedures.
New subsection (2) provides that the registrar may access records transferred to the Public Record Office from Prince Henry’s Institute of Medical Research and disclose that information in circumstances as prescribed by the legislation. I know this provision will be welcome for many donor-conceived children who have desperately sought details of their fathers emanating from this clinic, as will the steps forward on gaining access to the identity of their biological fathers, albeit requiring the father’s consent, for those born pre-1988.
This bill does not go anywhere nearly far enough. Mistakes which continue to have profound impacts on those born in an era of secrecy and anonymity and also on those who donated during this period and long themselves to know who they may have created will not be redressed by this legislation. It is not fair on the many Victorians who are seeking answers about where they come from.
The Napthine government has betrayed donor-conceived people by denying them access to this information and affirming the injustices that currently exist under Victorian law. Members should make no mistake. This bill affects several thousand Victorians. These are real people and it has been a privilege for me and I know for the member for Ivanhoe, the member for Prahran, the now Minister for Energy and Resources and others to have met those people over the past four years.
I want to relate to the house part of the response of a group of donor-conceived people when the Law Reform Committee’s report was released. They sent a beautiful card which has on the front a photograph of them jumping for joy on the steps of Parliament House. The photograph includes Narelle and the card was signed by her. Amongst the words in beautiful handwriting is this:
- You should be very proud of the final report.
- We realise it was a difficult decision for the committee to recommend retrospective legislation.Thank you for listening and then acting on what is right and just. This report is the vanguard of recognising the rights of people born and to be born from ART. I hope you can see what a golden day it was for us to witness the report tabled in Parliament.
Then they quote Cicero:
- To be ignorant of what occurred before you were born is to remain always a child. For what is the worth of human life, unless it is woven into the life of our ancestors by the records of history?
Victoria has always led the way in the area of regulation of assisted reproductive treatment. We on this side are disappointed that the government’s bill does not go as far as it should, but, as I stated at the outset, small steps are better than no steps and we will not be opposing this legislation. While we are not opposing this legislation, we will make it very clear, as we have previously but especially on this day of all days, that if we are elected to government in November, we will introduce legislation that ensures that all donor-conceived people have the right to identifying information about their donors regardless of when they were born and whether the donors believed they would remain anonymous.
We will ensure that the legislation contains the safeguard of contact vetoes in line with the report of the Law Reform Committee for those donors who do not want contact with their offspring, in recognition of the fact that unwanted contact could well be disruptive to people’s lives.
I want to finish by relating the evidence of Lauren Burns to the Law Reform Committee. She said:
- Initially I was told that my donor would have forgotten about me, definitely wouldn’t want to know me; in fact, finding out about my existence would have negative impacts and potentially even ruin his life. There is a perception that donors must be protected from donor-conceived people … and the way the debate is framed about potential impacts on past donors suggests the very existence of donor-conceived people is somehow toxic and an embarrassment, which is quite hurtful to us …
- After meeting with the then Governor of Victoria [her mother’s treating doctor], he agreed to write to my donor on my behalf and in fact my donor responded within days. … Anyway, finding out about my existence didn’t ruin my biological father, Ben, and his three children’s lives; in fact, they responded in the opposite way to which I had been warned. They were very welcoming and after writing letters and speaking on the phone we all met in person and have been in touch since that day. Before we met I was extremely nervous and on the day it was quite overwhelming to be surrounded by people that looked like me. Afterwards I think my overarching feeling was one of relief, relief to finally be able to trace the origins of my looks, personality and interests and this had the effect of soothing the endless whirring of questions which had been like a splinter in my brain.
It is the responsibility of this house today to relieve that suffering. I am eternally disappointed that the government has not embraced this opportunity. As I have stated, Labor will do so if it is elected in November.
Hansard, 7 August 2014