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