Access to information about donor assisted conception

Treatment information

Fertility providers in Western Australia are required to provide information about assisted reproductive technology (ART) treatments to the Department of Health WA for inclusion in the Reproductive Technology Treatment Registers (external site).

Treatment information includes:

• treatment cycle type and dates
• clinic details
• non-identifying information on parents
• non-identifying information on donors (if applicable)
• medical reasons for use of assisted reproductive technology
• whether a treatment cycle:
  • was part of a planned surrogacy arrangement
  • had a fertility preservation purpose
  • used donor gametes (sperm or eggs) or embryos
• whether pre-implantation genetic testing (PGT) was performed on embryos
• whether intracytoplasmic sperm injection (ICSI) was used in fertilisation
• treatment cycle outcomes and non-identifying information on any babies born
• if any related adverse events occurred as a result of treatment.

Non-identifying donor information

Non-identifying information has been collected on the Reproductive Technology Registers since 1993.

Non-identifying information on donors may include:

• donor code
• sex
• hair colour
• eye colour
• complexion
• build
• height
• marital status
• occupation
• education
• interests
• religion
• place of birth
• a description of genetic and/or cultural heritage received from the donor’s grandparents
• personal health history
• family health history
• blood group and rhesus factor
• at the time of the donation, the number and sex of children in the donor’s own family
• reason for participation
• personal statement for recipients or child/ren resulting from donation

Identifying information

Since 1 December 2004 fertility providers must also include identifying information on sperm, egg and embryo donors in an ART cycle. This is information is held in the mandatory register.

Identifying information on donors includes:

• sex
• given name/s
• surname
• maiden name (if applicable)
• date of birth
• place of birth
• postcode at the time of donation
• occupation at the time of donation.

Non-identifying information

The Department of Health WA holds non-identifying donor information from 1993 onwards.

Prior to 1993 clinics may be able to assist in obtaining donor information.

Mandatory register

If a donor conceived person was conceived on or after 1 December 2004, they have the right to access identifying information about their donor/s from the mandatory register once they reach 16 years.

Voluntary register

Jigsaw DNA Connect (external site) has established a voluntary register for people involved in donor assisted conception in Western Australia.

JIGSAW DNA Connect allows for donors, recipients and donor conceived people to voluntarily provide information about themselves to the Donor and Offspring Register and for this information to be shared with people related through donor conception if all parties agree.

Access to the information is available to donor conceived people who are 18 years or older, parents of donor conceived children (less than 18 years), sperm, egg or embryo donors.

1. Complete the Application for Donor Information form (PDF 208KB). You will need to complete as much information on the form as you can to help find the correct record in the register.
   
   
2. Scan or copy your identification documents. Your identification document/s should include your photograph, signature and current residential address. This might be a combination of documents such as:
   
   a. drivers licence
   b. student ID card
   c. passport
   d. birth certificate
   e. healthcare card
   f. school report or university transcript.
   
   
3. Submit the form and copies of identification documents to the Reproductive Technology Unit (RTU) of the Department of Health. Please forward application to RTU@health.wa.gov.au or Reproductive Technology Unit, PO Box 8172, Perth Business Centre, WA 6849.
   
   
4. Attend a free information and support session that will be arranged by the RTU. The session will allow you to work through the potential implications of obtaining information about your donor for you, your family, your donor and the people that they’re close to. Counselling can occur in person or online (by using Teams, Zoom or Skype).
   
   
5. Once counselling has been completed, a Donor Information Report form will be prepared for release. The report will contain identifying and non-identifying information about your donor.
   
   
6. You will be sent the report by registered post or secure email.

If your donated sperm, eggs or embryos were used in Western Australia from 1 December 2004 you would have consented to your identifiable information being shared with any children born as a result of your donation when they turn 16 years old.

Donors have recently been notified that these donor-conceived people have started to turn 16 and are becoming eligible to access information about their donors. This means that, depending on when your donation was used, your information will start to become available to your donor offspring.

Whilst legislation makes it clear that donors do not have any parental rights or responsibilities towards donor conceived offspring, there is growing understanding of the importance for all people in knowing about their genetic heritage.

A donor conceived person who has the legislated right to access donor identifying information will take part in an information sharing and support session prior to the release of information. The session will cover the potential implications of obtaining information for the donor conceived person, their family, donors, and the people they’re close to.

Contact from donor conceived offspring may be unexpected and it may take some time for you to consider how to proceed. Some donor conceived people may wish to access medical or genetic information, to write letters or share photos, or to meet. It has been shown that donor conceived people are generally very respectful of their donor’s wishes and preferences for contact.

Donors may access identifying information where there is consent from all parties. JIGSAW DNA Connect (external site) is a Western Australian service that allows for donors, recipients and donor conceived people to voluntarily provide information about themselves to the Donor and Offspring Register and for this information to be shared with people related through donor conception if all parties agree.

Read more about information for gamete donors (PDF 136KB).