The Assisted Reproductive Technology Act 2007 (ART Act) and the Assisted Reproductive Technology Regulation 2009 (ART Regulation) established a Central Register to support information for donor conceived people, donors of sperm, eggs and embryos, parents and siblings of children who are donor conceived, and those born through surrogacy arrangements and health services providing ART.
In order to ensure that the Central Register holds information about all donors and donor conceived people, the ART Act and Regulation require ART providers to collect and store information about donors and women undergoing ART treatment and to provide this information to the NSW Ministry of Health for inclusion on the Central Register within two months of the birth of every live baby conceived using a donated gamete.Information on the Central Register can be accessed by people conceived using donated gametes once they turn 18 years of age. The ART Act also allows parents to access certain non-identifying information about their child's donor, and donors to access non-identifying information about their offspring.
The Central Register commenced on 1 January 2010 with the commencement of the ART Act and the ART Regulation. Since that date all ART providers have been required to provide identifying information about donors, the children born as a result of ART treatment using donated gametes and their mothers, the NSW Ministry of Health for inclusion on the Central Register.
It is mandatory for ART providers to provide this information within two months after every life birth resulting from ART treatment using donated gametes. This means that information related to the birth of every child born as a result of ART treatment after 1 January 2010 will be recorded on the Central Register.
No. All ART providers are required to collect information from donors for inclusion on the Central Register:
Once any donor conceived offspring have turned 18 (i.e.. from 2028), they can apply to the Central Register for any or all of the identifying information.
Since the commencement of the ART Act and Regulation gametes for use in ART treatment can no longer be donated anonymously. However in order to allow people to complete their families, the ART Act provides transitional provisions to allow women to continue using anonymously donated gametes in certain circumstances. The transitional provisions allow women:
Details about the births resulting from ART treatment that fall within the transitional provisions will not be included on the Central Register unless the information is placed there voluntarily.
Donors who donated sperm, eggs or embryos before 1 January 2010, people who were donor conceived before 1 January 2010, and people who fall within the transitional provisions of the ART Act, can voluntarily register information about themselves on the Central Register.
Only where both the donor and donor conceived person have given their express consent to do so, will identifying information about each other be exchanged.
If you provide your information voluntarily to the Central Register your details will stay on the Central Register until you request in writing to have them removed. It is important that you advise the NSW Ministry of Health of any change to your contact details.
Information placed on the Central Register as part of the mandatory requirements under the ART Act, (i.e. information related to every live birth of donor conceived offspring after 1 January 2010) will remain on the Central Register and cannot be removed.
People conceived prior to the commencement of the ART Act 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.
People born as a result of ART treatment using donated gametes to whom the transitional provisions of the ART Act apply, that is 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 the donor of a gamete is non-identifying information about:
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.
If you are a donor, donor offspring or seeking information about a genetic sibling, your details will be placed on the Central Register after the NSW Ministry of Health has received your application form and verified your name and age. The Ministry of Health will then send your details to the nominated ART provider for authentication and possible matching with either a donor or other offspring from the same donor. This process will take up to 60 days.
If the other party (donor, donor offspring or genetic sibling) has not also voluntarily registered their information on the Central Register, your details will be held on the Central Register until such time as the matching information has been received.
Please remember that it will only be when the other party has also voluntarily provided their details to the Central Register and has given their express consent for information to be released, that information can be provided to you.
The NSW Ministry of Health does not hold personal health records, these are held by individual doctors and clinics. The NSW Ministry of Health works with NSW ART providers to facilitate any required exchange of information for the Central Register.
If you don’t know which ART provider was used, or if the clinic has now closed, your records will be sent to all ART providers in NSW, in order to attempt to find a match for you.
No. Only people over the age of 18 can voluntarily place their information onto the Central Register. However as a parent of a donor conceived child you will be able to access non-identifying information about the donor.
Yes. The voluntary exchange component of the Central Register is just that, voluntary, and the Central Register does not operate retrospectively. Only donors whose donated sperm, eggs or embryos were used prior to 1 January 2010, and who voluntarily place their details onto the Central Register and consent to having their information released, will be able to be contacted or have their identifying information accessed in accordance with their own wishes.
Since the changes to the ART Act that commenced in May 2016 donor conceived people who were conceived prior to the commencement of the ART Act, and their parents where the person is under 18 years of age, are entitled to non-identifying information about their donor and other offspring.
That is fine. Anyone who was a donor, or who was donor conceived before 1 January, 2010, can choose to just place information on the Central Register and nothing more. There is no obligation to provide any more information than you choose to provide or to consent to release of all of your information.
Following the changes to the ART Act that commenced in May 2016 donor conceived people who were conceived prior to the commencement of the ART Act, and their parents where the person is under 18 years of age, are entitled to non-identifying information about their donor and other offspring.
If you have voluntarily provided information to the Central Register and consented to the release of that information but you later change your mind, you can remove your information.
Simply notify the NSW Ministry of Health in writing of your decision to remove your details and this will be done. However donor conceived people who were conceived prior to the commencement of the ART Act, and their parents where they are under 18 years of age, are entitled to non-identifying information about their donor and other offspring.
If you apply for "accessible information", i.e. non-identifying information, about your donor to the ART provider the information will be provided to you in writing by the ART provider. The ART provider must provide this information to you within 28 days of receiving your application.
If the application for "accessible information", i.e. non-identifying information, is made to the NSW Ministry of Health the information will have to be obtained from the ART provider because the Ministry of Health does not hold any medical records. The ART provider must provide the records to the Secretary, NSW Ministry of Health who will then send the information to the applicant. This process will take longer than 28 days.
You are entitled to get non-identifying information "accessible information" about your donor. Other information including identifying information will only be available if your donor has voluntarily placed his or her details on the Voluntary Register and consented to the release of that information. If you apply for information from the Voluntary Register, once the NSW Ministry of Health has gone through all checks, any information that the donor has provided consent to be released will be sent to you via Registered Post. The advice you receive will contain the released information, information about counselling providers and confirmation of the ART provider.
If your donor has not any provided information to the Central Register your information will be retained on the Voluntary Register and you will be notified if a match is made.
If your donor, or other donor offspring, has consented to having their contact information released you will receive those contact details and you are free to contact them.
However, the NSW Ministry of Health encourages people contemplating meeting with a donor, or other offspring from the same donor, to speak to a counsellor first. Please be aware that most counsellors are private practitioners and therefore will charge a fee for consultation.
If the details about your donor or other offspring from the donor have not been voluntarily provided to the Central Register when you provide your details your information will remain on the Central Register. If your donor or other offspring from that donor come forward at a later time and provide express consent for their identifying information to be released you will be notified.
You are entitled to receive non-identifying information even if your donor has not placed his or her details on the voluntary Register.
Yes. In NSW, people can publish advertisements for a gamete donor. Ministerial approval to advertise is not required. However, it is an offence to provide money or other inducements, other than reasonable expenses, to the donor for the donation.
The law differs in other States and Territories and you should check with the relevant authorities in other States and Territories if you wish to advertise there.
A private ART arrangement means ART treatment using a donated gamete that resulted in a live offspring and was not carried out for fee, reward or in the course of a business.
All parties involved in a private ART arrangement i.e. the donor of the gamete, the woman undergoing ART treatment and the spouse of the woman, may provide information to the Secretary NSW Health for inclusion on the Central Register. The information must be provided in writing on the approved form and be accompanied by documents demonstrating the accuracy of the information contained in the notice.
The information that may be provided about a private ART arrangement is information of the kind that ART providers are required to provide e.g. identifying details about the donor including place of birth, medical history, ethnicity and physical characteristics and the sex and year of birth of each offspring of the gamete donor, identifying information about the woman who gave birth to the offspring.
For more information refer to Central Register information on Forms and Information.
