Current Regulatory Framework
The term 'donor conception' refers to a range of reproductive techniques – such as in-vitro handling of oocytes, sperm or embryos for the purposes of establishing pregnancy – involving the use of donated gametes and embryos. People that have been conceived by assisted reproductive technology (ART) using donated gametes and embryos are commonly referred to as being 'donor conceived'.
There is currently no dedicated ART legislation in Queensland, Tasmania the Australian Capital Territory and the Northern Territory governing donor conception information. Accredited ART clinics in these jurisdictions are required to adhere to the National Health and Medical Research Council’s (NHMRC) Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (Guidelines) which, since 2004, prohibit clinics from using gametes in reproductive procedures unless the donor has consented to the release of their identifying information to any persons born as a result of their donation.
Inquiry Into Donor Conception Information
On 24 February 2022, the Attorney-General and Minister for Justice announced that Queensland Parliament has referred the rights of donor-conceived persons to access genetic information about their donors to the Legal Affairs and Safety Committee (Committee) for inquiry. The decision comes over 11 years since the Legal and Constitutional Affairs References Committee called for Queensland to introduce legislation to regulate donor conception. As part of its review, the Committee was empowered to consider:
- the views and experiences of donor-conceived people, donors and industry stakeholders of the current framework;
- the current governance/regulatory frameworks, including registers established interstate;
- options to manage collection, storage, and disclosure of identifying and non-identifying information about donors, donor-conceived persons and relatives;
- whether and how to collect and disclose identifying information about donors where a donation was made on the condition of anonymity, including matters relating to consent;
- whether any model should include information from private donor arrangements;
- costs of any proposal including to establish and maintain any register and options for efficiencies, including a user-pays model;
- whether regulating donor conception practices and assisted reproductive technology should also be considered as part of establishing a donor conception register; and
- human rights engaged under the Human Rights Act 2019 (Qld).
The report contains an overview of these matters, alongside six recommendations that will make it possible for donor-conceived people to be provided with important information—including health information—about their donor and donor siblings. We highlight those recommendations below.
The right of donor-conceived persons to know their genetic origins, and the extent to which identifying information about donors should be given to donor-conceived persons
The question posed in this part of the report goes to the heart of the legal and ethical dilemma before Queensland Parliament – does a person's right to know their genetic history outweigh a donor's right to privacy? Disclosing identifying information about a donor has the potential to cause fundamental changes to their relationships and the way they are perceived in the community, as well as potentially identifying the donor’s relatives and any donor-conceived siblings. The Committee recommends that all donor-conceived persons be legislatively provided with the right to know the identity of their donor when they reach the age of 18, regardless of when they were born. In making this recommendation, the Committee found that a donor's right to privacy is 'not absolute' and needs to be balanced against the right of donor-conceived person's to access information about their donor and genetic origins. In this regard, the Committee is clear in its position that any change to legislation regarding the release of identifying donor information should be retrospective.
Further, the Committee recommends:
- identifying information about donors, including their medical history, be made available on request to all donor-conceived persons when they reach the age of 18;
- information about the gender and year of birth of donor-conceived persons born from their donation be made available on request to all donors;
- information about the gender and year of birth of donor-conceived siblings be made available on request to donor-conceived persons; and
- requests for contact with a person's donor, their donor-conceived persons or donor-siblings be facilitated subject to consent of the person being contacted.
Access to historical clinical records and implications of retrospectivity
The Committee considered the views of submitters in relation to donor-conceived persons having access to historical clinical records, including that the historical context of anonymous donations has created a situation where identifying donor information is available to some donor-conceived people but not others. The Committee also considered the matter of noting donor conception status on birth certificates. The Committee heard evidence that early knowledge of being donor conceived is important to the formation of identity for donor-conceived persons and contributes to their wellbeing. Without a requirement to note donor conception on a birth certificate, a person may not be aware of their donor conception status and therefore also unaware of their genetic origins.
In considering the above, the Committee recommends that the Queensland Government introduces legislation to:
- prohibit the deliberate destruction of historical donor records;
- require clinics involved now and historically with donor conception to retrieve, check and submit all donor information to a central register within a reasonable timeframe; and
- provide that birth certificates of donor-conceived persons be annotated (or, in the case of those already born, amended) to note the fact of donor conception.
Access to support and counselling for donor-conceived persons, donor recipient parents and donors
Under the current framework, persons born from donated gametes seeking information about the donor are required to approach their fertility clinic. The clinic must examine the consent from the gamete donor and arrange for counselling by a professional with appropriate training, skills, experience and competency prior to providing relevant information (which may be withheld if the person has not yet reached the age of 18 and is not assessed as sufficiently mature).
Concern was raised that the fertility industry has an 'insurmountable' conflict of interest in providing this counselling prior to accessing donor-conceived information, although the Committee considered it vital that measures, such as counselling and support, continue to be in place to support the experience and wellbeing of donor-conceived persons, recipient parents and donors. To mitigate this conflict of interest, the Committee recommends that access to support and counselling be provided to these parties and that government considers funding the costs of these services, and that this support and counselling should be provided independent of the fertility industry.
Whether a register should be established
To facilitate the rights of donor-conceived persons to be legislatively provided with the right to know the identity of their donor when they reach the age of 18, the Committee recommends that a central donor conception register be established within the Registry of Births, Deaths and Marriages as a matter of urgency. It is proposed that this register be mandatory in relation to donor conception achieved within fertility clinics, and available voluntarily to those who have pursued donor conception in private arrangements.
The Committee also recommends:
- the Queensland Government undertake an investigation to determine how to (a) encourage participants in private donor conception arrangements to lodge donor conception information on the central donor conception register and (b) ensure the information is accurate;
- the staff who operate this register to actively contact previously anonymous donors about relevant changes to the law and available support services, and permit them to lodge contact preferences; and
- the Queensland Government works with states and territories to investigate the linking of donor conception registers across jurisdictions and any potential implications.
Benefits, risks and implications of donor conception practices arising from any recommendations
The Committee recognised a myriad of potential risks arising from the recommendations, including that the release of identifying information about donors has potential to reduce the supply of gametes to the fertility industry and consequently recipient parents. Additionally, it was recognised that donor conception laws need to apply both to gametes donated within Queensland and to gametes used in Queensland but imported from elsewhere. One submitter noted:
There is a current problem in Victoria; a loophole which allows Victorian residents to access donor gametes from international donors. Where this occurs, the resultant donor conceived people do not have the same protections in terms of access to identifying information as those conceived with gametes donated within Victoria.
To support all donors through the implementation of changes recommended in the report, the Committee recommends that all past, current and future donors be fully informed of any relevant changes to the law and that they will be identifiable to those born from their donation.