Sonia Allan comments upon the long and winding road faced by donor-conceived people seeking information about their genetic heritage, and the announcement that the Victorian government intend to change laws to enable all donor-conceived people equal access to information about their donors.

_____________________________________________

Introduction

It has been a long and winding road for donor-conceived people in Victoria, Australia. Just like donor-conceived people all over the world, they have been fighting for information about their genetic heritage for decades.

Again, there is a glimmer of hope that all donor-conceived people there will be given rights of access to information about their donors. Whether that hope will become a reality will be seen over the coming months , and again lies in the hands of politicians.

The following is a reflection on my involvement with such matters over the past 12 years. It describes the inquiries, submissions, and my observations of the incredible resilience, drive and determination of donor-conceived people, donors and recipient parents during that time as they have continued their fight for information, justice and truth.

The Victorian Law Reform Commission reference on assisted reproduction

In 2003 I was introduced to the plight of donor-conceived people. They had already long since been fighting for information. I was working as a legal research and policy officer at the Victorian Law Reform Commission (VLRC), on the VLRC reference on access to assisted reproduction, legal parentage and surrogacy.

It was there that I met a young Narelle Grech, Myfanny Walker, and others, all who had the same message to share: they sought information about their donors, their genetic siblings, information that was important to them, and they couldn’t have it. They made submissions, they attended roundtables, they called for help.

They laid themselves bare, spoke about their most personal struggles, and their calls for information were rejected and dismissed.

Strikingly, Victoria did have laws, that gave some people access to information. However, the laws, passed at different times, meant that some donor conceived people could have information, while others could not.

This was a consequence of the general position that when legislation is enacted it operates prospectively – that is, from the date it was enacted forward – unless explicit provision is made otherwise. As there was no explicit provision to recognise the rights of all donor-conceived people, changes to the laws regarding information release applied to some people but not others. Thus

  • people conceived with sperm donated after 1988 could access information with a donor’s consent; and
  • all people conceived with sperm donated after 1998 had a right to information; but
  • people born before 1988 had no rights of access. At best they could place their name on a voluntary register and hope that the donor did the same.

The VLRC reference was not focused upon addressing such inequity. That reference had been set up to consider access to assisted reproductive treatments by adults seeking treatment, how to resolve issues regarding legal parentage, and whether the government should legislate to permit altruistic surrogacy. The focus was ‘parent centered’, and not upon the needs or calls of donor conceived people in existence for information about their donors and siblings.

Notification of donor-conceived status — for future children

The VLRC did nevertheless accept that there was a contradiction in enshrining the best interests of children and the right to know information about one’s genetic heritage in legislation, and yet not ensuring that donor-conceived people knew of their status. As such the VLRC recommended the inclusion of an addendum to birth certificates (an additional sheet of paper) which would be given to donor-conceived people when they apply for their birth certificate at age 18 notifying them of their status.

In 2010, legislation that provided for such addendums and notification came into effect, alongside a system to educate parents about the importance of telling their children they are donor-conceived and how to go about doing so. However, once again, the laws were prospective, and only apply to people born after 2010.

Issues faced by donor-conceived people already living and now grown, were not addressed. There continued to be injustice, inequity, and great need. There also continued to be many donor-conceived people, parents, and donors, who continued to search, seek and fight for information.

Over the following years, their calls for honesty, openness and support, would not diminish, but rather, would grow.

Independent Efforts

In 2007, I was approached by a then student of mine, and asked to jointly prepare a submission to the Attorney General of Australia, 1 recommending a National Register for information be set up.

At that time, we thought that if we asked for a voluntary register, at least it would be a start, but we knew that ideally, information release needed to be ‘retrospective’ in that the very people who called for information would not ever have such information if the law did not give them that right. Nevertheless, we sent our submission, in the hope that something would change.

We received a polite “thank you” letter.

I imagined that our singular attempt was one of many other singular attempts, by people all over the country, affected by an issue that in one way or another touches us all.

The Senate Committee on Legal and Constitutional Affairs

There was however growing recognition of the issues by some, and a willingness to advocate that something must be done.

One such person was Senator Trish Crossin, and on 16 June 2010, the Senate referred the matter to the Legal and Constitutional Affairs References Committee for inquiry. Many people again made submissions, and in the February 2011 report on its inquiry into the past and present practices of donor conception in Australia, the Australian Senate Legal and Constitutional Affairs References Committee called for

  • the introduction of legislation to regulate donor conception in all jurisdictions that do not have it in place “as a matter of priority”; and
  • the establishment, “as a matter of priority”, of a national register of donors to enable donor-conceived individuals to access identifying information about their donor.

The Senate Committee left open the question as to whether the legislation and central register should have retrospective effect.

The report created hope, excitement, and for a moment belief that people would gain the information they sought. The Government would do something, their decades of work was not in vain…

However, the Federal Government’s response, while agreeing with all recommendations “in principle”, emphasised that the matter of regulating assisted reproduction fell to the states. There would be no national register.

Faces fell, excitement was replaced with sadness, and frustration set in. But, only for a while. This is a a group of people, whose needs are so great, whose sense of justice so strong, that they vowed they would not give up. When one person felt exhausted by the fight, another stood up to speak to the politicians, the doctors, the public, to share their stories once again with the news, to speak for others, and to continue fighting for their rights.

Exploring the Issue of Retrospectivity

For my part, I felt that I could contribute by turning my mind to the matter of retrospectivity and, as a legal academic, to contemplating further what could be done in a legal sense. In my research I found that there was nothing impeding the legislature from passing retrospective legislation allowing the release of identifying and non-identifying information about donors to donor-conceived individuals – if it saw fit to do so. However, there was also the need to consider the interests of all people who may be affected by such changes, being donor-conceived people, parents, and donors.

With further analysis, I found that by implementing a contact veto system, a balance could be struck to protect privacy of people who did not wish to be contacted, while still providing donor-conceived people with information. 2 This model for information release was nothing new – it mirrored the model that had been applied decades before when adoptees were given the right to have information; and provided a workable solution to the issues faced by donor-conceived people.

I shared it with donor conceived people, parents, and donors,  and again, observed hope and determination that their call for information would be strengthened, and finally would be heard.

A second larger project followed, in which a special edition of the Journal of Law and Medicine on donor-conception was published. A number of experts in various fields of law, ethics and social work from Australia, the United Kingdom, and the United States were commissioned to further explore each of the ethical, legal and practice issues raised by information release – the notion of ‘contract’; the issue of ‘interests’ and ‘rights’; the comparison between adoption and donor-conception. In addition, it was recognised that there had been decades of work done by donor conceived people, donors, and parents, all who sought information, and it was crucial to the exploration of the issues to not only include academic analysis, but to be informed by the people most affected. The experience of support services that acted in cases of information release and exchange were also sought. In total eight papers were published in edition 19(4) of the Journal of Law and Medicine in June 2012.

One of the most striking papers was by a donor-conceived person and parent who respectively had been lobbying governments, clinics, and supporting donor conceived people for over 20 years. 3 Their paper particularly highlighted the years of lobbying and work, the contradiction in responses, and the lack of support given to people who sought information.

In addition, Professor Richard Chisholm, a Family Law judge, and former commissioner at the time of information release to adoptees had occurred, wrote a significant paper drawing on his expertise, and applying it to the area of donor-conception. His words resound: ‘donor offspring and adoptees never agreed to being deceived about their genetic history. Thus the analogy with adoption strongly suggests that donor offspring should have similar information rights.’ 4

State Based Inquiries

During this time, and following the Senate Committee’s report both Victorian and New South Wales governments had moved to set up inquiries into donor conception practices.

Again, submissions were made, people spoke in parliament and everyone called for something to be done. The inquiries were presented with the model for retrospective release of information using a contact veto, now further supported by arguments in ethics, philosophy, and law.

Once again, donor-conceived people, donors and parents laid themselves bare.

During this period too, the fears about not having information crucial to a donor conceived person’s well-being became reality in the most devastating of ways. Narelle Grech was diagnosed with a heritable form of bowel cancer. Her 15 year search for her donor, the constant dismissal of her views, would only be heard with special exception, weeks before she died. 5

Victorian Parliamentary Law Reform Committee Recommendations for Retrospective Release of Information

Narelle was alive however to see the incredibly significant event on the 28 March 2012, in which the Victorian Parliamentary Law Reform Committee tabled its report on the Inquiry into Access by Donor-Conceived People to Information about Donors.

The Committee, chaired by Mr Clem Newton Brown (then a Liberal MP), unanimously supported retrospective release of information for all donor conceived people, using the contact veto model to ensure the privacy of people who did not wish to be contacted. (The report is pdf available for download here as a PDF file.)

In Parliament politicians that had sat on the committee cried. They had done an amazing thing.

A  photo, taken on the stairs of the Victorian Parliament house said it all – donor-conceived people together, smiling, each hugging tightly a copy of the report.

The Liberal Government Winds the Recommendations Back

However, the recommendations would be further reviewed by the then Liberal Government, and wound back following research commissioned by the health department and conducted by the Victorian Assisted Reproduction Authority (VARTA) and Monash University.

The research surveyed 42 donors. It reported that:

  • ‘a little less than half supported the recommendations’,
  • ‘that a little more than half did not support them’, and
  • that ‘a little less than half of these’ preferred a contact first approach in which information would be released only if the donor consented.

The research would be used as the basis for the position adopted by the then Victorian Government in its response, which was tabled in Parliament on 20 August 2013  (and can be read here:  pdf Government Response (PDF, 149.86 Kb).

That is, ultimately, the then Government’s position became that donor-conceived people conceived prior to 1988 would be given access to information only if donors consented, placing them in the same position as those conceived with sperm donated between 1988 and 1998 — but continuing the inequity that those conceived with sperm dated after 1998 may have full access to information.

The position mirrored the position stated in VARTA’s original submissions to the Victorian Parliamentary Law Reform Committee inquiry which supported a ‘consent first’ approach, and the position supported by clinics and practitioners who made submission to that inquiry. It reflected, it appears, approximately 10 donor’s views.

It did not mirror the position of many of the donors, parents or donor-conceived people (or others) who had participated in the two year inquiry.

The report could clearly have been interpreted in another way. That is, restating the above, approximately two thirds of donors (around 28 of the 42) supported information release, with around 10 of those people favouring a consent first approach. A ‘little more than one quarter’ it seems supported the status quo. This in fact indicates greater support for the model recommended by the Victorian Parliamentary Committee by donors than any other position.

Nevertheless, a bill adopting the ‘consent first’ approach was passed by the Liberal Victorian Government in late 2014, which is due to come into force in June 2015.

Of course, despite not going as far as people had suggested, this was an acknowledgement of donor conceived people’s rights to information. As such, and despite expressed disappointment, donor-conceived people, donors, and recipient parents saw light. The laws, while not what they wanted, were one step closer to the goal they wish to one day achieve.

And with the impending change, people did not give up – they kept talking to politicians; a young woman, Lauren Burns, was profiled on Australian story sharing her incredible journey of seeking her donor father; Sarah Dingle, a NSW donor-conceived person whose records were tampered with to remove the donor code – thus destroying her chances of finding information – also appeared on the show, and made public her plight; Narelle’s story was retold; campaigns were run; support groups set up; exhibitions organised; and…

Labor Government Takes Power: Promises Return to Original Recommendations

On 8 February 2015 it was revealed that the new Labor Government would follow through on it’s support for the Victorian Parliamentary Law Reform Committee’s recommendations.

The changes are to be based on a private members bill – “Narelle’s Law” – that Labor MPs Jane Garrett and Anthony Carbines introduced in opposition to the Liberal Government’s response late last year.

Their proposed changes will remove existing inequalities under the law and implement the contact veto system to allay privacy concerns. Both donors and donor-conceived people would have the ability to refuse contact, while information may be released to enable people to have information they need. Fines would likely be imposed if a contact veto is breached.

The Age’s Farrah Tomazin, reports that the now Health Minister of Victoria said:

“Access to donor information should be consistent, no matter when someone was conceived…Everyone has the right to access information about where they came from, whether it’s to know more about their genealogy, medical history, or so that they can try to connect with the generous individuals who donated.”

The story is once again one of hope, with a slightly sick feeling of fear intertwined. I imagine many will share such hope and trepidations, some 10,000 fold or more.

May the months to come bring them good news, and may other states and territories follow!

In the meantime I draw attention to the campaign Are You Donor Conceived?

—————–

See also sections on Health Law Central for further information about laws regarding access to information by people involved in, or born as a result of, donor-conception in Australia and around the globe.

 

Notes:

  1. Sonia Allan and Michael Williams, Assisted Reproductive Technology: Access to Genetic Information and Donor Identification, Proposal for a Federal Register for Donor Conceived Individuals (Submission to the Commonwealth Attorney General, 2007).
  2. Sonia Allan, ‘Psycho-Social, Ethical and Legal Arguments For and Against the Retrospective Release of Information about Donors to Donor-Conceived Individuals in Australia’ (2011) 19(1) Journal of Law and Medicine, pp 354-376.
  3. Damian Adams and Caroline Lorbach, ‘Accessing donor conception information in Australia: A call for retrospective access’ (2012) 19(4) JLM 707.
  4. Richard Chisholm, ‘Information rights and donor conception: Lessons from adoption?’ (2012) 19(4) JLM 722.
  5. Farrah Tomazin, ‘Sperm Donation Girl Dies after ReunionThe Age, April 7 2013.