The ACT government is to change the law to give the children of anonymous sperm and egg donors in the ACT the right to know who their genetic fathers or mothers are.
The government introduced the Assisted Reproductive Technology Bill (2023) on Tuesday.
The bill, which is very likely to pass, would make it easier for the children of anonymous donors to get information about their genetic background.
Children would be able to discover the name, address and date of birth of the donor, though he or she could also have stipulated that they didn't wish to be contacted.
At the moment, information about the genetic background of donors is kept by each of the three clinics in the ACT which do what medical professionals call Assisted Reproductive Technology (ART) but the new law would set up a central register for the territory.
Children of mothers who gave birth after artificial insemination would be able to access genetic information more easily.
Sperm or egg donors could still put "not to be contacted" when they donate but their identity and information about their genetic background would be available.
The concern is that donors may actually be the fathers of several children. It would be important for these unknowing siblings to know of the possibility that they have brothers or sisters.
Assisted reproductive technology providers must give information about each birth to the ACT government.
This mandatory information is:
- donor's full name;
- donor's home address;
- donor's date and place of birth;
- donor's ethnicity and physical characteristics;
- donor's relevant medical history;
- the sex and year of birth of each of their donor conceived offspring
- the name of each provider that has previously obtained a donated gamete (sperm or egg) from the donor and the date on which the gamete was obtained
- donor's consent; and the full name, sex and date of birth of the child; and the full name of the person who gave birth to the child.
The law has two stages. Initially, putting information into the central register would be voluntary but the ACT government would then consult and move towards it being compulsory.
About 100 babies are born each year in Canberra after sperm donations.
"We have heard from donor-conceived individuals that they can experience barriers when trying to gain information, causing a lot of frustration and distress," the ACT health minister Rachel Stephen-Smith said.
"Establishing a donor register will make it an easier and more streamlined process for people to access this information.
"We are also working to ensure donor-conceived individuals, their parent/s and donors can access support and information in a timely and sensitive way."
Consultation on the second, compulsory stage would start next year.
"The second stage will be implemented after further community and stakeholder consultation and will include a retrospective register for all donor-conceived people to access information about their parent/s' donor, irrespective of when they were conceived or born, if those records still exist," the ACT government said.
There would be obvious gaps in the system. Some children are conceived after donations of eggs or sperm from people in other countries. Their information may not be available.
The drive for new law was given impetus by Marisa Paterson, MLA for Murrumbidgee.
Two years ago, she moved a motion calling on the territory government to review regulation and support around assisted reproductive technology.
She made a series of speeches after hearing the stories of three donor-conceived people who had described how the anonymity of their donors had affected them.
"I was deeply shocked. It had a major impact on me hearing their stories and really has just sent me on a mission to see reform in this area," she said of the three personal stories, provided anonymously by Donor Conceived Australia.
"I feel like their stories are really traumatic and I don't believe that we should have this unregulated industry and the sort of impacts of that occur anymore."
Each of the three accounts stressed the anxiety surrounding romantic and sexual relationships.
"Growing up as a teenager in Canberra, I was very conscious of dating or having an intimate relationship with others for fear that I could potentially have a consanguineous relationship without knowing," one woman said in her statement.
After paying for a DNA test in her adulthood she discovered three older half-brothers in Canberra, which she said confirmed her caution.
"Of all the difficulties being donor-conceived creates, the treatment by the medical system has been the worst," another woman wrote in her account.
She said her parents had entered a private agreement with their doctor and an anonymous sperm donor, but after contacting the doctor as an adult she discovered "all the vague statements the doctor had supplied about my donor's situation were unlikely to be true".
"I uncovered important medical and cultural information that my parents and I should have been been able to access," the woman wrote in her account.
