Removing donor anonymity retrospectively in Victoria, Australia – two years on
Chief Executive Officer, VARTA (Victorian Assisted Reproductive Treatment Authority)
Progress Educational Trust15 May 2019
It has been over two years since world-first changes to donor conception laws were implemented in Victoria, Australia, allowing all donor-conceived people to learn their sperm or egg donor's identity. What have we learnt about the things people want, don't want, or are prepared to try in relation to donor linking communication and connection?
Donor sperm has been used by medical facilities to treat couples with male infertility since at least the 1940s, while donor eggs have been in use for around 30 years.
In 1988, Victoria was one of the first jurisdictions in the world to implement legislation recognising the right of donor-conceived people to gain access to information about their donor. This legislation established a central donor conception register to record the details of donor-conceived children, their parents and the donor. This Central Register has now been in place for over 30 years.
The existence of donor conception registers enables individuals to make applications for information about people with whom they are connected. However, the right of donor-conceived people to obtain identifying information about their donor has varied over time.
Under previous Victorian laws, only those conceived using a post-1998 donor had the right to apply for and receive identifying information, as the donor provided consent at the time of donation. Previously, identifying information could be released only with a donor's consent.
In March 2017, ground-breaking legislation was passed allowing people conceived from donor treatment in Victoria before 1998 the right to apply for, and receive their donor's identifying information, regardless of whether or not the donor consented to this at the time of donation. The new legislation gave pre-1998 donor-conceived Victorians the same rights as those born in or after 1998.
For the last 30 years, donors also have had the right to apply for information about their donor offspring. Similarly, parents can make applications for information about the donor. Identifying information can be provided with the consent of the donor-conceived person or donor, respectively.
Pre-1998 donors have the right to determine if and how they have contact with donor offspring who apply for identifying information about them by completing a contact preference document. They can choose to be contacted by email, phone or letter, or by using the donor linking service offered by the Victorian Assisted Reproductive Treatment Authority (VARTA), based in Melbourne. They can also choose not to be contacted at all. The donor-conceived person must abide by the terms of the contact preference. VARTA's experience is that donor-conceived people are respectful of donor's wishes and there have been no breaches.
The 2017 legislative changes also saw VARTA taking over management of the Victorian donor conception registers, alongside the existing support and information service it offers to donors, donor-conceived people, parents of donor-conceived people, and the families of all.
VARTA's counselling team assists people thinking about, or making applications, for information from the donor conception registers. Support is also offered to people contacted as a result of these applications, and to their family members. VARTA assists with the exchange of information and meetings between people who connect via donor conception treatment.
In the first two years under the new legislative regime, 163 pre-1998 applications for information were made to the Central Register. Of these, 119 were made by donor-conceived people, seven by parents and 37 by donors. Of the 163 applications, 72 had known outcomes at the end of the second year. The remainder are still being processed. Of these known outcomes, 53 were applications for information about donors and 19 were applications from donors seeking information about their donor offspring.
Of the 29 donors who were located, 21 agreed to be contacted, and eight lodged 'no contact' preferences. Among donors applying for information about donor offspring, many had key medical information to convey or were already connected with one of their donor-conceived offspring and, therefore, sought information about their other offspring.
While many of those conceived prior to 1998 did not know that they were donor-conceived when they were contacted by VARTA, around half have chosen to exchange information with donors via donor-linking services. Support is also offered and provided to family members in these circumstances. Engagement with counsellors tends to be lengthy in these situations.
VARTA has interviewed 22 people about their experiences of applying to the Central Register utilising an independent research consultant. Respondents have identified sensitivities and challenges faced by applicants and those impacted by the application. This includes the enormity of the experience of seeking information and or being asked to be contacted, particularly for donors who had donated many years before and believed that they were anonymous.
Medical history and photographs were commonly exchanged as part of the donor-linking process and some people spoke about being surprised at the degree of similarities between them and the related party (not only in appearance but experience and interests) and the strength of the connection created. The interviews also capture the experiences of people finding out that they are donor-conceived as adults, and parents' experiences with telling their children of their donor conception.
Counsellors have also supported many people who have found out that they are donor-conceived through DNA testing, some of whom then make applications to the donor registers.
Implementation of these legislative amendments is relatively recent but, to date, the number of donors who are willing to share information with their donor-conceived offspring is greater than the number who submit a preference for no contact.
It is still too early to form a clear picture of the impact of donor-linking on individuals and families, particularly on donor-conceived people who learn of their conception as a result of an application (by their donor) or on early sperm donors and their families. However, VARTA's experience has shown that supportive services are crucial for managing connections between people related through donor conception, including the provision of an intermediary (a VARTA counsellor) to provide protection for those choosing to link and exchange information.
Louise Johnson will be speaking at the Progress Educational Trust's free-to-attend public event 'Anonymous No More? Donor Conception and Direct-to-Consumer DNA Testing' in London on the evening of Wednesday 19 June 2019.
Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.