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.
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.
In 2007, I was approached by a then student of mine, and asked to jointly prepare a submission to the Attorney General of Australia,
- 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). ↩
- 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. ↩
- Damian Adams and Caroline Lorbach, ‘Accessing donor conception information in Australia: A call for retrospective access’ (2012) 19(4) JLM 707. ↩
- Richard Chisholm, ‘Information rights and donor conception: Lessons from adoption?’ (2012) 19(4) JLM 722. ↩
- Farrah Tomazin, ‘Sperm Donation Girl Dies after Reunion‘ The Age, April 7 2013. ↩