Victorian legislation concerning assisted reproduction is changing to provide people who were conceived by sperm donation prior to 1988 access to at least some information about their donors.1 Currently this right does not exist under Australian privacy law.
While the amendments avoid the prospect of legal action for breach of privacy by donors who donated on the basis of anonymity, registered Assisted Reproductive Treatment providers (Providers) and doctors who are or who have been involved in donor conception procedures should familiarise themselves with how the changes to the legislation may affect them.
Some of the amendments are already in effect, with the remainder set to commence on 29 June 2015.
What is the current position?
The Assisted Reproductive Treatment Act 2008 (Vic) establishes two registers from which information about people participating in or born from donor treatment procedures can be obtained. The central register contains both identifying and non-identifying information of donor participants since 1988, while the voluntary register records personal information voluntarily lodged by a donor, donor-conceived person or recipient parent.
While people conceived from gametes donated after 1988 have a right to access identifying information (either with or without a donor’s consent), people conceived from donations prior to 1988 face significant difficulties in accessing any information at all, as donor anonymity was a requirement of consent to the donation process.
These difficulties were highlighted recently in an Australian Story program featuring two women who were conceived as a result of pre-1988 treatment procedures. Their efforts, as well as other campaigners for legislative change, contributed to the Victorian Parliamentary Law Reform Committee (VPLRC) recommending in 2012 that legislation be introduced to allow all donorconceived people to obtain identifying information about their donors, regardless of when gametes were donated or whether the donor has consented.
While the resulting amendments do not provide an unfettered right of access to identifying information, the changes are significant for all donor conception stakeholders.
Summary of the amendments
Under the new Assisted Reproductive Treatment Further Amendment Act 2014 (Vic) (Amending Act), the anonymity of stakeholders who made donations prior to 1988 has been maintained, as the disclosure of any identifying information still requires the donor’s consent.
In brief, the amendments will:
- enable people conceived from pre-1988 treatment procedures to access identifying information about their donor, where it is available and the donor has consented, through the central register;
- enable all donor-conceived people access to information about genetically related donor siblings through the central register;2
- provide a mechanism for information about genetic or hereditary conditions, diseases or illnesses to be disclosed and exchanged between donors and their offspring and between donor-conceived siblings;3
- secure access to and preserve donor treatment records for pre-1988 donor-conceived people;4 and
- address apparent shortcomings with current donor-linking services and information exchange constraints by simplifying the system and providing for increased counselling services and donor-linking.
Providers will be required to keep a register of pre-1988 donor treatment procedures and advise the Registrar of Births, Deaths and Marriages by 1 July each year of information entered in the register over the preceding 12 months.
Importantly, for other individuals, such as a retired doctor, relative of a doctor or personal representative of a doctor, records or copies may be provided to the Registrar without the prospect of liability for an offence or civil action for disclosing this information.
Any records which identify donor treatment procedure participants must be kept for at least 99 years after the creation of the records.
The Amending Act also allows a Provider to disclose predictive non-identifying medical information about the health of a donor or a donor-conceived person to relevant stakeholders. In this instance, a doctor must certify that the disclosure is necessary to save a person’s life or to warn the person about the existence of a genetic or hereditary condition that may be harmful to that person or their descendants.
What are the legal implications (if any)?
After the VPLRC released its recommendations, concerns were raised that donors who had been guaranteed anonymity may find it confronting that access to identifying information about them would be granted. If adopted in full, some suggested that the recommendations could be seen as changing the conditions of the donation contract or possibly constitute a breach of a donor’s privacy.
The Victorian Government’s decision to support amendments which protect donor anonymity while providing some information to pre-1988 donor conceived people, should avoid the prospect of successful litigation by aggrieved donors. The amendments appear to provide sufficient safeguards, from allegations of privacy breaches at least, to Providers, doctors and other individuals who give records or other donor information to the Registrar.