05 September 2012

Conceptions

The Australian Government has released its 18 page response to last year's Senate report on assisted fertility.

The response [PDF] to the Senate & Legal Constitutional Affairs References Committee report into Donor Conception Practices in Australia indicates that
The report highlighted several areas of concern within the Australian community about the regulation of donor conception practices. Many of the recommendations in the report identified a desire for nationally consistent legislation regulating donor conception. The report also addressed concerns about consanguinity, importation of embryos and payments made to donors. The report also provided a comprehensive analysis of the record keeping practices of Assisted Reproductive Technology (ART) service providers. It recommended that there was a need for a nationally consistent method of maintaining and sharing information about donors, donor recipients and donor conceived individuals that will enable those concerned to access information, where appropriate, about their genetic history and relationships. ....
The Australian Government supports the need for the interests of donor conceived individuals to be protected but acknowledges that there is no constitutional power that would support a Commonwealth scheme to legislate comprehensively in this area. States and Territories are responsible for enacting legislation regulating donor conception practices in Australia.
It concludes that -
States and Territories looking to regulate the ART industry have the opportunity to make use of two significant national resources. One supported by the Australian Government through the development of the NHMRC ART Guidelines and the other by the Fertility Society of Australia, through the RTAC Code of Practice and the development of a robust accreditation system. The Australian Government encourages States and Territories, who have not already done so, to implement a legislative framework that will mandate compliance with the established accreditation and regulatory scheme. Using the RTAC accreditation process and the NHMRC ART Guidelines as the basis for legislative frameworks will ensure consistent approaches to donor conception across Australia. States and Territories also have the option of ensuring compliance with the regulatory framework through making provisions in their legislation for offences and penalties for ART service providers who do not comply with the national standards. In addition, individual Australians who are involved in ART procedures can assist in the protection of their interests and those of their donor conceived children by using the services of accredited facilities. In cases of non-compliance by accredited ART service providers, individuals are encouraged to avail themselves of the proper channels for making health related complaints, by contacting the Health Complaints Commissioner or equivalent in the relevant State or Territory.
The response to specific recommendations is -
R1 - that jurisdictions which do not already have legislation in place (Qld, Tas, NT and ACT), should  establish legislation to regulate donor conception in those jurisdictions. 
  • The Australian Government supports this recommendation as consistent with recommendations by the NHMRC in the 2007 NHMRC ART Guidelines. States and Territories are responsible for the enactment of legislation in their respective jurisdictions. The Australian Government encourages those States and Territories that do not currently have legislation regulating donor conception practices to establish such legislation. The Australian Government also supports consistency of State and Territory legislation. Consistent legislation will ensure that donors, donor recipients and donor conceived individuals will have the same access to information regardless of which jurisdiction they are in. It will also discourage the practice of forum shopping for persons who wish to donate or who wish to use ART services. 
R2 - that the Australian Government pursue all available policy and political options, including through COAG and SCAG to ensure that nationally consistent legislation relating to donor conception is developed as a matter of priority. 
  • supported in principle. The Australian Government does not have constitutional power to legislate comprehensively in this area to ensure that legislation is nationally consistent. 
R3 - that any nationally consistent legislation should include, at a minimum: a prohibition on donor anonymity;  a limit on the number of families a donor is able to assist;  rights of access by donor conceived individuals to identifying and non identifying information about their donor and siblings; and protection for the welfare and interests of donor conceived children. 
  • supported in principle. 
R4 - in the context of the development of nationally consistent legislation relating to donor conception, the Australian Government and state and territory governments give consideration to how private donor conception arrangements can best be regulated to ensure the rights of donors, recipients, and donor conceived individuals are appropriately protected. 
  • The Australian Government supports this recommendation in principle. The Australian Government does not have constitutional power to regulate private arrangements. 
R5 - The committee recommends that the Australian Government, through the Standing Committee of Attorneys General, do everything possible to ensure the establishment, as a matter of priority, of a national register of donors, and that such a national register should also include information about donor conceived individuals. 
  • The Australian Government does not support this recommendation. The Australian Government does not have constitutional power to comprehensively legislate to create a national register, absent a referral of power from the States. 
R6  - that a national register established by the Australian Government and State and Territory governments should have a particular focus on: security arrangements;  privacy protections; and a clear articulation of the role of the body administering the register. 
  • See Response to R5. The Australian Government supports the principle of the recommendation that registers established by State and Territory governments should have a focus on security arrangements, privacy protections and a clear articulation of the role of the body administering the register. 
R7  -  that each state and territory should put in place their own centralised register.
  • supported in principle but a matter for States and Territories. 
R8 - that, in the establishment of state and territory central registers, consistency in approach to the granting of access to information held on those registers should be a matter of priority. 
  • supported in principle but a matter for States and Territories. 
R9 - that a central register, either in the form of a single national register or a separate register in each state and territory, should operate according to the following principles regarding access to information: donor conceived individuals should be able to access identifying information about their donor, once the donor conceived person reaches 18 years of age, or such younger age as agreed by all states and territories; donors should be able to access identifying information about individuals conceived as a result of their donation only with the consent of the donor conceived person; donor conceived individuals should be able to access identifying information about their siblings only with the consent of those siblings; and donors, donor conceived individuals, and recipient parents, as well as close relatives of donors or donor conceived individuals, should be able to access non-identifying information about the donor or donor conceived person, as applicable (provided that where a donor conceived individual seeks information, the person is at least 16 years of age, or such younger age as agreed by all states and territories) 
  • supported in principle but a matter for States and Territories. 
R10 - that, if after further consideration by the states and territories of the issue of retrospectivity, registers will not be retrospective, a national voluntary register or separate register in each state and territory should be established to allow donors who previously donated anonymously to agree to have their information recorded and disclosed to any individuals conceived as a result of their donation. 
  •  supported in principle but a matter for States and Territories. 
R11 - that donors in private arrangements be encouraged to have their information recorded and disclosed to any individuals conceived as a result of their donation on a national voluntary register or separate register if such registers are established in each state and territory. 
  • The Australian Government supports this recommendation in principle but notes that this is a matter for States and Territories. 
R12 - that any voluntary registers incorporate a DNA databank, to enable donors and donor conceived individuals to have their details placed on the register for possible matching, in circumstances where records relating to their identities have been destroyed. 
  • supported in principle but a matter for States and Territories. 
R13 - that the states and territories jointly fund a campaign to widely publicise the establishment of either a national voluntary register or separate voluntary registers in each state and territory. 
  • supported in principle but a matter for States and Territories. 
R14 - that the Australian Government review, within a period of two years after this report, the current regulatory framework for overseeing compliance by clinics and medical practitioners with the National Health & Medical Research Council Guidelines on the use of assisted reproductive technology in clinical practice and research, with a focus on: whether the regulatory framework is adequate to ensure compliance with the guidelines; whether sanctions applied to clinics for failure to comply with their obligations under the guidelines are sufficient; and whether a more comprehensive regulatory framework is required. 
  • The Australian Government does not support this recommendation. 
R15 - If, following the review as set out in R 14, it is considered that the current regulatory framework for clinics and medical practitioners undertaking assisted reproductive technology procedures is not sufficient, the committee recommends that the Australian Government, through COAG and SCAG, work with the state and territory governments to develop a more comprehensive regulatory framework. 
  • See response to Recommendation 14. 
R16 - Regardless of the outcome of the review described in RR 14 and 15,  that the Australian Government, in consultation with the Fertility Society of Australia, create a review mechanism (eg an Ombudsman-type mechanism or health complaint commission), that can be accessed by donor conceived individuals and parties undergoing assisted reproductive technology procedures, to investigate and address complaints against clinics, including when they fail to comply with their obligations under the National Health & Medical Research Council Guidelines or relevant legislation and regulation. 
  • The Australian Government does not support this recommendation. States and Territories are responsible for regulating donor conception practices in their jurisdictions. They are therefore responsible for conferring complaint handling responsibilities on their own Ombudsman-type mechanisms to investigate complaints against clinics and their compliance with the NHMRC ART Guidelines and relevant legislation and regulation. 
R17 - that, except in circumstances where the parties have a particular ethnic background and it is difficult to obtain gametes or embryos from a person with the same ethnic background (or in any other similar circumstances), the importation of gametes and embryos from overseas donors should be banned in Australia. 
  • The Australian Government does not support this recommendation. The NHMRC ART Guidelines do not currently support the proposed ban on the importation of gametes from overseas. See Recommendation 19. 
R18 - if a ban on the importation of gametes and embryos from overseas is not possible, the committee recommends that any gametes and embryos imported into Australia from overseas donors undergo the same requirements and procedures for use in donor conception as gametes and embryos donated in Australia, including screening and counselling requirements. 
  • supported. 
R19 - that the Australian Government undertake a review of the National Health and Medical Research Council Guidelines to specifically address the rights of access to information of donor conceived individuals conceived with the use of gametes and embryos imported from overseas. 
  • The Australian Government supports this recommendation. Paragraphs 6.1, 6.10, 6.11, 6.12 and 6.13 of the NHMRC ART Guidelines acknowledge the right to information of all those involved in ART procedures. The NHMRC ART Guidelines provide that clinics ‘must not use donated gametes in reproductive procedures unless the donor has consented to the release of identifying information about himself or herself to the persons conceived using his or her gametes.’ Para 7.1 identifies a similar right for donor conceived persons to knowledge about genetic parents and the existence of any genetically related siblings.  
R20 - that the Australian Government and state and territory governments work together, including through COAG and other appropriate national forums, to agree to a nationally consistent and permanent long-term solution to the management of records relating to donor conception, to ensure that records which identify donors, donor recipients, and donor conceived offspring, are appropriately preserved. 
  • supported but a matter for States and Territories: management of health records is governed by State and Territory legislation. 
R21 Until such time as R 20 is implemented a temporary moratorium be placed on the destruction of all records held by government agencies, doctors, clinics, and assisted reproductive technology providers that identify donor conception treatment procedures undertaken by donors and donor recipients. 
  • supported in principle; the regulation of health services and health records including data collection and mandatory record keeping requirements is a matter for States and Territories. 
R22 - that the prohibition on payments for donations of sperm, oocytes or embryos in Australia should be maintained. 
  • supported. 
R23 - that donors should continue to be able to be reimbursed for 'reasonable expenses' incurred in relation to their donation. 
  • supported  
R24 - that the Australian Government, in consultation with state and territory governments and the Fertility Society of Australia, develop more detailed guidelines on what constitutes 'reasonable expenses' for which donors can be reimbursed. 
  • noted 
R25 -  that: counselling should be mandatory for donors and donor recipients prior to undergoing a donor conception procedure; donors and donor recipients should be able to elect to receive counselling on the donor conception process and its consequences from a counsellor independent of the fertility clinic in which they are undertaking treatment; parents of donor conceived individuals should have access to counselling following the birth of their child, to equip them to be able to tell their child about their conception and to support their child in dealing with any self-identity issues that may arise; and donor conceived individuals should have access to counselling as they mature and, in particular, when making contact for the first time with their donor or half-siblings. 
  •  supported in principle. The Australian Government encourages States and Territories to legislate to require ART service providers to maintain an RTAC licence which in turn will require ART service providers to comply with the NMHRC Guidelines on counselling of persons involved in ART procedures. 
R26 - that State and Territory governments, in consultation with the Fertility Society of Australia, should give consideration to funding the provision of counselling for donors, donor recipients and donor conceived individuals following the birth of donor conceived individuals. 
  • noted; a matter for States and Territories and the Fertility Society of Australia. 
R27 - that State and Territory governments, in consultation with the Fertility Society of Australia, should develop guidelines or requirements to ensure that counsellors providing counselling to donors, donor recipients or donor conceived individuals have an appropriate understanding of the issues involved with donor conception. 
  • noted; a matter for  States and Territories and the Fertility Society of Australia. 
R28 - that State and Territory governments should commission research to ascertain the numbers of individuals born through donor conception in their respective jurisdictions and that, once more accurate data is obtained, further research should be conducted in relation to the risk of consanguine relationships among those people. 
  • noted; a matter for States and Territories.
R29 - that each donor should only be able to assist up to a maximum of four families (in addition to their own) in Australia. 
  • noted; a matter for States and Territories.
R30 - that the issue of limits on donations should be reviewed by the states and territories, in consultation with the Fertility Society of Australia, once further evidence becomes available about the importance of forming a strong sense of self-identity for donor conceived people and the risks of consanguine relationships. 
  • noted; a matter for States and Territories.
R31 - that clinics and medical services should amend the consent forms which are signed by donors, to ensure that consent is given to the sharing of information with other clinics and medical services in the same jurisdiction and in other jurisdictions in Australia. 
  • noted; a matter for States and Territories.
R32 - to the extent that the states and territories have not already done so, birth certificates of donor conceived children should be notated so that when they apply for a birth certificate over the age of 18 years, they can be provided with additional information about their donor conception circumstances if they choose. 
  • noted; a matter for States and Territories.