The report is yet another of the studies by Commonwealth and state/territory legislative committees, law reform commissions and other bodies regarding gamete donation - in particular sperm donation - and anonymity. (Examples are here, here and here.)
The report states that
This inquiry arose as a result of the first Law and Safety Committee inquiry into the inclusion of donor details on the register of births, the report of which was tabled in 2012. Throughout the first inquiry, the Committee found that a number of issues were raised, such as retrospective access to records relating to donor conception, and the need for support services for people seeking donor conception information. Although these issues were outside the Inquiry’s terms of reference, the Committee considered that these issues merited further investigation, and resolved to conduct a broader inquiry to examine them.
The key issues examined by the Committee in this inquiry into managing donor conception information are:
Which agency should collect and maintain donor conception information?
Presently, donor conception records for people conceived prior to 1 January 2010 are held by the clinic or doctor that provided Assisted Reproductive Technology (ART) treatment. Access to donor conception records is made extremely challenging when clinics close down or doctors retire. The Committee was very concerned to hear of donor conception records that had been deliberately damaged or destroyed.
The Committee heard evidence on the value of having an appropriately experienced and resourced agency to maintain donor conception information, and ensure that the information is stored and accessed effectively.
For these reasons, the Committee has made several recommendations in the area of management of donor conception information, including the recommendation to establish a new agency to manage a Register of donor conception information, irrespective of when that information was created. The Committee recommends that the new agency’s role be greater than record keeping, and that it should also offer support and public education services. The Committee also recommends that, as a matter of urgency, the Assisted Reproductive Technology Act 2007 be amended to make it an offence to destroy, tamper or falsify donor conception records.
Retrospective access to donor conception information
The most sensitive and complex issue that the Committee examined in the course of the inquiry was the issue of retrospective access to donor conception information. The Committee received substantial evidence from donor conceived people who wish to know their genetic heritage. The Committee understands that this is a very personal and emotional issue for many donor conceived people and their families.
In considering the issue of retrospective access to information, the Committee sought to consider the perspective of all parties. However, despite the Committee’s best efforts to gather their views, the voice of donors was largely missing from this inquiry. Only one submission was received from a donor and no donors appeared at public hearings. In light of the lack of direct evidence received from donors, the Committee is unwilling to recommend substantive change in relation to access to donor conception information.
The Committee is mindful that community attitudes towards donor conception continue to move away from past attitudes of secrecy and considers that access to identifying donor conception information should always be made possible where all parties to donor conception consent. The Committee has made six recommendations relating to access to donor conception information in this regard.
While some ART providers do facilitate the exchange of information between donors and donor conceived people, the Committee considers the provision of such information is a sensitive area that requires specialist skills and falls outside the main role of ART providers. For this reason the Committee recommends that the agency established to manage the Register of donor conception information should provide an ‘active register’ and engage people with specialist skills to enable the exchange of donor conception information with the consent of all parties.
Such a Register will strike a balance between fulfilling the needs of donor conceived people to know their genetic heritage and respecting the wishes of those donors who donated under a different system to maintain their anonymity if they wish.
Support for people seeking donor conception information
Facilitating access to donor conception information requires the specialist capabilities of counsellors who understand issues particular to donor conception. Donor conceived people, donors and their parents may need different forms of support at different stages in their lives. At present, support is often limited and not always easy to access.
The Committee made three recommendations relating to support for people seeking donor conception information. The Committee recommends that the agency established to manage the Register of donor conception information also provide comprehensive community education, public awareness campaigns, counselling, intermediary support and DNA testing.
Having a single agency manage donor conception information and provide associated support services would provide a simple ‘one?stop shop’ for people that would be easy to navigate and able to provide ongoing support for people that would be easy to navigate and able to provide ongoing support.The report is structured as follows -
Chapter One gives the background to the establishment of the inquiry, describes the terms of reference and the conduct of the inquiry.
Chapter Two provides an overview of the current way donor conception information is managed in New South Wales.
Chapter Three examines the evidence received regarding which agency should have responsibility for the collection, storage and management of donor conception information.
Chapter Four explores the differing viewpoints of inquiry participants regarding whether there should be retrospective access to donor conception information. The Chapter also looks at retrospective access to information in comparable jurisdictions.
Chapter Five looks at the counselling, public awareness campaigns, education, intermediary support and DNA testing essential for supporting people access donor conception information.The Committee's recommendations are
R1 - that the Attorney General establish a new agency to manage a Register of donor conception information and that this agency also assume responsibility for providing support to those involved in donor conception.
R2 - that in the interim, and as a matter of urgency, the Ministry of Health should engage specialists to liaise with donors, donor conceived people and recipient parents, to facilitate access to identifying information with the consent of all parties.
R3 - that the donor conception management agency, once established, collect all donor conception information from assisted reproductive technology clinics and enter it into a secure Register of donor conception information. This Register, once established, should comply with relevant National Health and Medical Council Research guidelines with reference to security and privacy provisions.
R4 - that, as a matter of urgency, the Attorney?General amend the Assisted Reproductive Technology Act 2007 to make it an offence to destroy, tamper or falsify any donor conception records.
R5 - that the new donor conception management agency implement procedures that allow those individuals conceived before 1 January 2010 to access nonidentifying information about their donor, regardless of whether or not the donor consents to such information being released.
R6 - that the new donor conception management agency implement procedures that allow those individuals conceived before 1 January 2010 to access identifying information about their donor where the donor consents to such information being released.
R 7 - that the new donor conception management agency implement procedures that enable the parents of a donor conceived person to access non?identifying information about the donor regardless of the donor’s consent on behalf of their child or/and until the child reaches 18.
R8 - that, for those individuals conceived before 1 January 2010, the new donor conception management agency implement procedures that enable the parents of a donor conceived person to access identifying information about the donor, where the donor consents to such information being released, on behalf of their child or/and until the child reaches 18.
R9 - that the new donor conception management agency implement procedures to ensure that the donor and the donor conceived person’s siblings have access to: a) any information that the donor conceived person has consented to being placed on the Register of donor conception information and b) further information, if the Registrar if is of the opinion that the contact is justified in order to promote the welfare and best interests of one or more of the persons concerned.
R10 - that the new donor conception management agency operate the Register of donor conception information on an active, or consent?release based approach, to best facilitate access to donor conception information.
R11 - that, as a matter of urgency, the Ministry of Health conduct an advertising campaign to raise awareness of the Voluntary Register.
R12 - that the services provided by the agency established to manage the Register of donor conception information include public awareness campaigns, community education, intermediary support, counselling, DNA testing, and the facilitation of contact where this is desired by both parties.
R13 - that the agency established to manage the Register of donor conception information conduct an advertising campaign to raise awareness of the Register and associated services available, such as intermediary support, counselling and DNA testing.
