Getting more information/ raising complaints

Donor conceived people in Australia can have barriers to information. Perhaps you are unsure of your donor code or have found out you are donor concieved from a DNA test. There can be multiple steps to finding out information and evolving information throughout our lives. some suggestions of possible steps to finding out information, raising complaints about your treatment or access to information are below:

*Firstly, just a note: Keep a record - start your own folder of your own archives. Even if handwritten about conversations with family, important dates, clues or stories - you never know if this could be important clues or breadcrumbs for later on. You might need to refer back to this, or follow the lead somewhere which gives you a breakthrough to more information. Print or save every clinic email, message and correspondence in case it proves helpful for the following steps. We do not know when pieces of information will become valuable and there may be many more decades of information to come.

1) The Clinic: Ask your parents, if you are able to, what clinic they went to and where that was. It could also be helpful to know the treating Dr’s name. - this could give you a clue as to where to initially contact to ask for information. It’s possible the clinic may have information about how many siblings/families that were conceived with the same donor, their birth month and years, and any non-identifying information about the donor if you want it and any other records they may have related to your conception. If this is not possible or the clinic refuse/dont have records or don’t exist anymore, go to the state based register in the state that you were conceived in.

2) State Based Register: Contact the register and give them as much information as you can about yourself and your parents so that they may be able to search for information pertaining to you. This could be your legal name at birth, your parents names, their treating fertility Dr if known, their address at the time of conceiving, your sibling’s names if any. If you have found out that you are donor conceived via a direct to consumer DNA test, it could be valuable to give the register the name of the close match half-siblings you have matched with if any. This could indicate to the register that you are connected to a particular donor code, or that they need to conduct further DNA testing with an existing donor code or link you to a donor code. Due to the record keeping of the clinics, potential destruction of records, loss of records or incomplete records, the register may be able to collate information from you with what they already have to connect you with more information or family members. Direct to consumer DNA testing isn’t able to fully be relied upon and the register may want to conduct further DNA testing with you if they are able to. Any information you can provide to them can be invaluable for completing records and connecting you with potential family members.

3) Consider DNA testing if you haven’t already: This is a large step with many things to consider but can provide answers the register may not be able to. DNA is also based on your genetics compared to an large existing database, whereas clinic paperwork may not be accurate. More information about DNA testing and considering this option is on the research page. However, this can give you many more answers that a clinic or register may not or may not be able to. DNA test results can also then give you the results that a DNA angel can work with to find out who the biological parent connection is, even if they themselves have not tested.

4) Next Steps: If you have exhausted these options and feel that there is no where else to search for answers, you may consider, while you wait - as there can be a long wait between pieces of information, DNA matches or law changes - potentially get involved with advocacy yourself. This can mean writing to your local MP or State Health Minister to tell them of your experience and difficulties along the way that you have faced. If the current legislation, registers or ability for you to get information is limited or lacking, let them know so it can be raised. This could mean writing to the Federal Health Minister if you find that you have siblings that were conceived across multiple States of Australia, or if you find you have siblings created across the world. The State and Federal Health Ministers needs to hear your story so that they can be informed about what Australian Donor conceived people face in their lives.

You may also like to lodge a complaint with your State’s Health Ombudsman to see if they are able to investigate anything for you. Perhaps there are records that have not been accurately given to the register.

You may also like to contact RTAC to lodge a formal complaint. These have to be listed on their yearly reports. Although this option is time limited as the Health Ministers have found the regulator and licensing body RTAC to be inefficient in the Rapid Review of 2025 and will be replaced. The fertility industry will soon have to follow the NSQHS Standards to coincide with every other branch of medicine in Australia. This is due to tireless advocates and countless hours of work towards demonstrating poor, unethical or reckless treatment and circumstances created by the clinics in Australia due to people following the first four steps.

You may like to do media. It is recommended that you research the journalist you would like to work with, or contact a journalist who has covered donor conception stories before. Legislation change and progress for donor conceived people can progress quickly when there are widespread social impacts. Attention can be placed on them and the potential risk for others when those who are willing to speak about their experiences. If you are uncertain, reach out to the community for help and support in the links to community above.