Access to donor information overhauled in South Australia

The calls of donor-conceived people for access to information about their genetic heritage and relations have increasingly been recognised as fundamental to family, identity, health information, and openness and honesty surrounding their conception.

Australia, as a nation, has long since recognised such rights. However, laws and practices vary across states and territories. Victoria commenced their first Donor Conception Register in 1984 and moved to full retrospective release of information in 2017. Western Australia has maintained a prospective register since 1992, and New South Wales since 2010.

All states and territories have required consent to release identifying information by donors before they donate since November 2004. Subsequently, children conceived after this date may access information via clinics or registers when they reach the age of 18. Other states and territories, including South Australia, Tasmania, Queensland, and the Australian Capital Territory, have all recommended the retrospective release of information to donor-conceived people and are at various stages of implementing laws and registers.

Now, ground-breaking legislation has just passed in the South Australian parliament, which will enable:

1. The provision of identifying information about donors to all donor-conceived people in South Australia, regardless of when they were born, meaning 'retrospective release' of information in some cases.
2. Exchange of information between donors and parents from birth, subject to consent.
3. Exchange of information between genetic siblings, subject to consent.
4. Notation on birth certificates of donor-conceived status.
5. The ability to apply for an integrated birth certificate, which will identify all parties involved in a person's conception and parenting.

For at least forty years, there have been calls in South Australia to enable access to identifying information about donors by donor-conceived people, recipients, and donors. The calls increased in the 1980s and 1990s when Victoria and Western Australia established Donor Conception Registers. Throughout the early 2000s, the South Australian Council on Reproductive Technology (SACRT) and the South Australian government's Social Development Committee recommended that legislation be amended to ensure donor-conceived people have access to information about their genetic parentage through establishing a Donor Conception Register.

However, while changes to the Assisted Reproductive Treatment Act 1988(South Australia) enacted in 2010 stipulated that the Minister may keep a register of donors and remove any impediments to transferring information onto the Register, it has taken many more years to see the Register created. Indeed, it was not until November 2021 that the South Australian Donor Conception Register was established, following recommendations made in a 2016 review of the Act's operation and effectiveness to change the word 'may' to 'must'. Legislation compelling the Minister to do so was passed in 2019.

Ground-breaking laws

It has taken several more years and further consultation to achieve new laws passed in the South Australian parliament on 19 March 2024, which will further the operation of the Register to store available and verifiable donor conception information relating to donor-conceived people, donors, and recipient parents. Additionally, the Register will support sharing important medical and genetic information between relatives. Donors, recipients, and donor-conceived people have all been involved in shaping and supporting the passage of this legislation via the consultation process during legislative reviews and by the South Australian Health Department as they have developed the Register. While some clinicians have raised concerns about the release of identifying information about past donors, support for such changes has been overwhelmingly positive. The decades it has taken to reach this point, indubitably demonstrates the extent of debate, consultation, and reflection that has occurred before deciding upon such positive changes.

Who can access and exchange information?

Notably, the new laws mean that all donor-conceived South Australians, 18 years and over, can access available information about their genetic heritage and relatives via the Register. This includes information about donors who may have donated under conditions of anonymity, regardless of when they donated. South Australia has, therefore, become the second jurisdiction in Australia to provide donor-conceived people with retrospective access to identifying information, including donations made prior to requirements for consent to release such information post-September 2004.

Information will also be made available to the parents of donor-conceived children under 18 years of age, where a donor consents, and to donors about people born as a result of their donation, where consent has been provided. Studies show that early disclosure and information may lead to better outcomes for donor-conceived people.

Furthermore, donors and genetic siblings will also be able to access non-identifying information on the donor-conceived person and if consent has been provided, also identifying information. All parties will be able to enter and share important medical and genetic information on the Register, should they choose to do so.

Contact preferences

To ensure the interests of all parties, the Register will allow donor-conceived people aged 18 years and over, parents of a donor-conceived child, and donors to list their contact preferences. This provides access to identifying information about donors for donor-conceived people pursuant to the legislation and exchange of identifying information about donor-conceived people and their donors/siblings where consent is provided while protecting a person's ability to control the private sphere of their life. That is, allowing people to control the extent to which, if any, they are willing to engage in contact, for example, not at all, via email/letter/phone, or in person.

Support and counselling services

To support those involved in donations made under the condition of anonymity before September 2004, a government-funded intermediary support and counselling service will also be available to those donors and their families as well as those immediately affected. It will, for example, support people with mandated disclosure of identifying information, making contact decisions, and dealing with further knowledge about donor conception.

Changes to birth registration

The law will require the birth registration statement submitted by the legal parent(s) to state if a child was born as a result of donor conception and to include particulars of the identity of the donor (if known). (Note - The birth registration statement is a legal document that must be submitted within 60 days of the birth of a child to the department of Births, Deaths, and Marriages (BDM), the government department responsible for registering births). Donations in a clinical setting will likely be cross-referenced with records submitted by clinics to BDM to ensure the donor conception is registered and validated.

Note - Such changes further current provisions that already provide for entry on the birth registration form for a child conceived as a result of a fertilisation procedure:

1. The name (if known) of the biological parent who donated the semen or ovum (the donor).
2. The sex or gender identity (if known) of the donor, and the donor's date of birth and place of birth (if known).

This includes 'private' or 'known' donors, where:

1. Following online registration by the parent(s), the donor is required to upload a copy of their passport, driver's licence, or government social or medical benefits cards, or....
2. If the donor doesn't have the required ID documents, a .pdf form is printed and signed by the parent(s) and donor listed on the birth registration to confirm the arrangement.

Of course, this relies on parents and known donors agreeing to include such information on the birth register, but it is a far cry from the practiced secrecy and anonymity of the past.

Importantly, the law provides that identification of a donor in a birth registration statement or an entry about the birth in the Register does not constitute an acknowledgement of parentage and does not otherwise make that person the mother or father of the child under any other law (for example, see section 10(C) of the Family Relationships Act 1975(SA)which provides for legal parentage in situations where donor conception has been used).

Changes to birth certificates

The new laws also provide that the birth certificate of the child will state that they are donor-conceived. This will enable the donor-conceived person to know their status and thus seek further information from the Donor Conception Register.

In addition, the legislation provides that birth certificates may contain further details, including that donor-conceived people may request, upon turning 18, that the donor's identity be included on the certificate if those details exist. Alternatively, if a donor-conceived person is under the age of 18, the donor's identity may be included if access to that information has been granted in the Register or with the written consent of the donor and each legal parent or guardian.

When will access to information be available?

Regulations outlining the full details of the new legislation will now be drafted. The Register will be expanded and subjected to a rigorous testing regime prior to opening to the respective parties. It is expected that participants will be able to access the South Australian Donor Conception Register from early next year.

The past, present and future of donor conception will explored at this week's Australian/UK PET event 40 Years of Egg Donation and Counting: What Have We Learned? What Happens Next?, taking place online this coming Wednesday (24 April 2024).

Attendance at this event is free. Register here.