The 2nd Reading Speech for the Assisted Reproductive Treatment Further Amendment Bill 2013 (Vic) addresses questions regarding access to information regarding 'genetic heritage' (considered in NSW last year here and elsewhere here, here and here).
The Legislative Council Hansard of 7 August (p 2449) reads -
Victoria was the first jurisdiction in Australia to recognise and address the needs of donor-conceived persons to access information regarding their genetic heritage. The Infertility (Medical Procedures) Act 1984 and the Infertility Treatment Act 1995 required information relating to treatment procedures using donor gametes to be recorded on a central register.
The current Assisted Reproductive Treatment Act 2008 maintains two registers from which information about persons participating in, or born from, donor treatment procedures can be obtained:
- a central register, which contains both identifying and non-identifying information about donor-conception stakeholders since 1988; and
- a voluntary register, which records personal information voluntarily lodged by the donor, donor-conceived person, or a recipient parent.
However, there are currently three separate regimes regulating access by donor-conceived people to information about their donors. The changes in the legislative regime over time reflect society's changing attitudes to donor conception and the rights of donor-conceived people to have information about their genetic origins.
Currently, people who were born from gametes donated after 1998 are entitled under the act to obtain identifying information about their donors when they reach adulthood. People conceived from gametes donated between 1988 and 1997 can access identifying information about their donors with the donor's consent. However, people conceived from gametes donated prior to 1988 have no legislated right to obtain identifying information. Prior to 1988 donors' anonymity was a requirement of the consent to donation process.
The 2012 parliamentary committee inquiry into access by donor-conceived people to information about donors was asked to consider the possible legal, practical and other issues that may arise if donor-conceived people who do not currently have access to information about their donors were provided with that information. In its final report the committee recommended the introduction of legislation to allow all donor-conceived people to obtain identifying information about their donors regardless of when the gametes they were conceived from were donated or whether the donor had consented.
The government considered the committee's report, carried out a comprehensive literature review and a detailed human rights analysis of the interests of all stakeholders, including donor-conceived individuals, recipient parents, donors and their families, and also considered the findings of VARTA's consultation with pre-1998 donors.
The government concluded that the committee recommendation to allow all donor-conceived people access to identifying information about their donors should be supported in principle, but would be more appropriately implemented with the consent of the donor. The government tabled its final response to the inquiry in August this year. The bill gives effect to the government's response, balancing the rights of all donor conception stakeholders whilst establishing a legal right of access to information for those conceived from gametes donated prior to 1988 where none existed before.
The mechanism for disclosure of identifying information provided in this bill is predicated on the consent of the donor in the same way as this occurs for persons conceived from gametes donated between 1 July 1988 and 31 December 1997.
This effectively extends the model that currently applies to persons born from gametes donated between 1988 and 1997 to donor-conceived people born from donations made prior to 1988, to enable them to access information about their donor where it is available. By providing disclosure of identifying information with consent, the model represents an effective implementation of the key committee recommendation to provide retrospective access, whilst balancing the rights of various donor conception stakeholders.
Access to information for persons born from donations made prior to 1988
The bill will allow for persons born from gametes donated prior to 1 July 1988 to be able to request and receive identifying information about their donor, where it is available and where their donor consents to its release, through the central register.
Upon receipt of an application, the registrar of BDM will be able to disclose identifying information if the applicant was conceived using gametes donated prior to 31 December 1997 and the donor has given consent to the disclosure. The disclosure of non-identifying information will apply upon receipt of an application by a person under section 56 of the act irrespective of whether consent is obtained.
The requirement of the act for an applicant to have received counselling prior to the disclosure of identifying information, or to be offered counselling in the case of non-identifying information, will also apply to persons seeking information relating to donor treatment procedures involving the use of gametes donated prior to 1 July 1988.
Access to information about siblings
Currently the voluntary register is the only formal avenue for a donor-conceived person and recipient parents to seek information about genetically related donor siblings. If a person conceived from the same donor's gametes (a half-sibling) is registered on the voluntary register, the donor-conceived person can obtain non-identifying and/or identifying information from the voluntary register, in accordance with the half-sibling's wishes. However, for this to be effective, the half-sibling must be aware that they are donor conceived, must be aware of the existence of the voluntary register and must be registered on it.
The committee heard that a significant issue for some donor-conceived people is the concern that they may unknowingly form a romantic relationship with a half-sibling.
The committee also heard that the provision of non-identifying information about siblings, such as birth month, year and sex, could provide donor-conceived people with a means to assure themselves that a potential partner is not a sibling.
This bill will allow for a donor-conceived person or a parent of a donor-conceived person to request information about that person's genetic siblings from the central register. In response to applications about genetically related siblings, the number of genetically related siblings in total and per family unit, their sex, month and year of birth may now be disclosed.
The committee also noted that although clinics currently provide donors who provided gametes before 1988 with basic non-identifying information about their donor offspring, donors do not possess this right under legislation.
All donors who consented to the use of their gametes after 1 July 1988 currently have the right to obtain from the central register non-identifying information about their donor offspring, regardless of the age of the offspring. The only non-identifying information that is provided is the donor offspring's sex and year of birth. The bill will provide for all donors, regardless of when they made donations, to be able to request non-identifying information about their donor offspring.
Exchange of information about significant hereditary or genetic conditions
Donors may become aware, some time after making their donation, that they have a medical condition that may be passed on to offspring. In these situations it may be critical that the offspring be advised that they may have, or may develop, a serious medical condition. There is currently no mechanism in the act for information about heritable genetic diseases or genetic abnormalities to be passed on to people who may be affected by this information. A similar issue may arise for donor-conceived people who wish to pass on medical information about a hereditary condition to donor-conceived siblings.
The committee recommended that a mechanism be introduced to allow a donor to provide medical information to a donor-conceived person where there is evidence of hereditary or genetic disease or risks to the health of the donor-conceived person, and that the same principles apply to donor-conceived people providing medical information to donor-conceived siblings. This bill will introduce a provision that enables health information about genetic or hereditary conditions, diseases or illness to be disclosed and exchanged between donors and their offspring and between donor-conceived siblings.
It is noted that registered assisted reproductive treatment (ART) providers already have established processes and experience and are best placed to disclose medical information when necessary. ART providers have procedures for notifying past and present patients of significant hereditary diseases and illnesses where the disclosure is necessary to lessen or prevent the threat to the person's health, life or safety, or to inform a person about the existence of a medical condition that may affect them or their offspring.
It is intended for this ART provider practice to apply to present patients, past patients and other affected donor-conception stakeholders (including pre-1988 donors and pre-1988 donor-conceived people). ART providers can provide affected individuals with access to specialist genetic counsellors and have experience in sensitively managing these disclosures, including in circumstances where an individual is unaware of their donor-conceived status.
The bill will provide for registered ART providers to manage the disclosure of medical information similarly to what is provided for in the NSW Assisted Reproductive Technology Act 2007, and to be able to request information about persons conceived from donated gametes from the central register to enable them to perform this function.
Securing access to and preserving donor treatment records
Other than through the voluntary register, persons conceived from donations made prior to 1988 currently have no legal mechanism to access information about their donors. Access to information about their donors is at the discretion of, and dependent on the resources of, individual clinics and doctors who carried out the treatment. The disparate location and management of records can be problematic for facilitating access.
It is believed that some pre-1988 records may be inaccessible, incomplete, inaccurate, or no longer exist. Where records are held privately, they are currently not protected under any legislation and are legally able to be destroyed at any time.
By securing records and facilitating information exchange or access to records between relevant record keepers and BDM, the bill will enable consistent and centralised access to information held in records to be established for stakeholders seeking information. In the bill, this will be achieved by:
- inviting individual doctors or other persons who may have records to provide these to the registrar of BDM so that the relevant information can be added to the central register;
- requiring ART providers that hold pre-1988 records to compile a register of prescribed information from records held by them and to provide the register to BDM so that this information may be added to the central register;
- allowing BDM to access and disclose information from the Prince Henry's Hospital records held at the Public Records Office of Victoria as required in order to respond to requests for information.
In the act, the destruction of records is an offence; this bill will extend this provision to records relating to donor treatment procedures involving the use of gametes donated prior to 1 July 1988. In addition, the bill will stipulate that all health records relating to donor treatment procedures must be retained for a period of 99 years. This will ensure these records are preserved in order to facilitate future access to them for the purposes of verifying or obtaining additional information held within them.
Where records are available, ART providers and BDM will create retrospective entries to be placed on the central register. It is intended that these entries reflect the entries required to be kept under the regulations, where that information has been recorded and is able to be ascertained.
Counselling, support and donor-linking services
The Committee heard that the commencement of the operation of the act in 2010 brought about changes in the services available to donor-conception stakeholders, suggesting that, in the minds of donor-conception stakeholders, these were markedly reduced and fragmented, and difficult and confusing to access. Currently, BDM manages the central and voluntary registers; counselling is referred to Family Information and Networks Discovery (FIND); and VARTA is responsible for public education.
The committee noted a number of apparent shortcomings with the current service arrangements for donor-conception stakeholders. The government's response resolves these shortcomings, addressing the current information exchange constraints, and simplifying the service system using the existing infrastructure and expertise of BDM and VARTA. The bill will also provide for increased counselling services and donor-linking.
The current limitations in the act relating to the exchange of information will be addressed in this bill, as these limitations have contributed to the criticisms that the system is disjointed and difficult to navigate. The bill will allow BDM to exchange information about applicants to the central or voluntary register with the prescribed counsellor in order to facilitate effective compulsory counselling sessions.
The existing requirement for a person seeking identifying information from the central register to undergo compulsory counselling will be retained. VARTA will assume responsibility from FIND for the provision of the counselling of applicants seeking information. VARTA will offer support and counselling services not just to applicants for information but also to the broader group of donor-conception stakeholders and other related parties, such as partners of applicants or subjects of an application or recipient parents.
Under the new arrangements set out in the bill, the subject of an application for identifying information whose consent is required may seek counselling on his or her own initiative, or BDM may refer the subject for counselling to assist the person in making a decision as to whether or not to consent. This will ensure that subjects of applications for identifying information are supported to understand the motivations and intentions of the person making the application, and can make informed decisions regarding consent.
In addition, VARTA will provide a voluntary donor-linking service, acting as an intermediary in the exchange of information and contact between donor-conception stakeholders. Encompassed in this service will be a letterbox facility which will enable correspondence between parties who wish to participate in the exchange of information confidentially and progressively.
ARTA's functions generally
Lastly, under the bill, VARTA will continue to provide education and resources about assisted reproductive treatment and fertility more generally and continue to provide support to parents in telling their children about the circumstances of their conception. The bill will also provide VARTA with responsibility to review and decide applications relating to advertising for egg donors under the Human Tissue Act 1982. Other applications under the Human Tissue Act 1982 will remain with the Minister for Health (and the Department of Health, as per present arrangements).