In NSW there are babies born every year who were conceived as a result of assisted reproductive technology treatment using donated gametes either as sperm, eggs or embryos created from donated gametes. Prior to the commencement of the Assisted Reproductive Technology Act 2007 (ART Act) on 1 January 2010 there was no process to support the disclosure of information about the people involved in this process. This has meant that many individuals who were born as a result of ART treatment using donated gametes have been unable to identify a biological parent or obtain information about their genetic heritage and background, which has been distressing for some and occasionally created medical and social dilemmas.
The ART Act established the Central Register to support information about donor conceived people, donors of gametes, parents and siblings of children who are donor conceived and those born through surrogacy arrangements, and to give donors and donor offspring greater opportunity to access information about each other. The ART Act provides that the Secretary, NSW Ministry of Health is to establish and maintain the Central Register.
The Central Register contains Mandatory Information which is information required to be provided in relation to all births resulting from ART treatment, where conception occurred after 1 January 2010. The Central Register also includes Voluntary Information about children born as a result of ART treatment using donated sperm, eggs or embryos, where conception occurred before 1 January 2010 and donors who donated gametes prior to the commencement of the ART Act.
The Ministry of Health strongly recommends that individuals seek counselling before registering or applying for information from the Central Register.
Since 1 January 2010 ART providers have been required to provide to the NSW Ministry of Health within two months of the date of birth, mandatory information regarding every child born alive as a result of ART treatment using donated sperm, eggs or embryos, or born through surrogacy, and whose conception occurred after 1 January 2010. for inclusion on the Central Register. The information that is required to be provided is:
- the full name, sex and date of birth of every child born as a result of ART treatment by the ART provider
- the name of the woman who gave birth to the child
- the full name and date and place of birth of the gamete donor.
The ART provider must also provide the following identifying information about the donors who donate sperm, eggs or embryos. This information must be provided by donors to the ART providers for inclusion on the Central Register:
- Full name, residential address, date and place of birth
- Ethnicity and physical characteristics
- Any medical history or genetic test results of the donor or the donor’s family that are relevant to the future health of:
- a person undergoing ART treatment involving the use of the donated sperm, eggs or embryo, or
- any offspring born as a result of that treatment, or
- any descendent of any such offspring,
- sex and year of birth of other offspring arising from the donation
- name of each ART provider who has previously obtained donated sperm, eggs or embryo from the donor and the date on which the sperm, eggs or embryos were obtained.
People who were donor conceived before 1 January 2010 and people who fall within the transitional provisions of the ART Act, can register any of the above information about themselves on the Central Register. Donors who donated sperm, eggs or embryos before 1 January 2010 can also register their details.
Where both the donor and donor conceived person have given their express consent to do so, information about each other can be exchanged.
As a result of changes to the ART Act that commenced in May 2016 individuals conceived prior to the commencement of the ART Act in 2010 as a result of ART treatment provided by an ART provider using a donated gamete are entitled to de-identified information, known as "accessible information", about their donor.
Individuals born as a result of ART treatment using donated gametes to whom the transitional provisions of the ART Act apply, i.e. although they were born after the commencement of the ART Act information about their birth is not on the Central Register, may also make an application for accessible information about their donor.
"Accessible information" about a donor of a gamete is non-identifying information about:
- the ethnicity and physical characteristics of the donor;
- the relevant medical history of the donor; and
- the sex and year of birth of each offspring of the donor.
Applications for this information can be made to either NSW Health or directly to the ART provider. Applications can be made by people over the age of 18 years who were conceived as a result of ART treatment using a donated gamete (ova or sperm) or embryo, or the parent where the person is a child.
When an ART provider receives an application for accessible information the ART provider must provide the information in writing to the applicant within 28 days. If the ART provider does not have the information or has reason to believe that another ART provider has the information a statement to that effect must be provided to the applicant. The ART provider must also give a copy of the information given to the applicant to the Secretary, NSW Health along with any information the ART provider has about the identity of the donor, including the donor code.
Where an application is made directly to NSW Health the ART provider may be directed to provide the information to NSW Health. Any information about the donor that is provided to NSW Health must be entered onto the Central Register.
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