- provisions that required fertility clinics to keep identifying information about a donor in a different place to other information about the donor up until 2010
- clinics changing ownership or the place of business moving.
Why is a DCR Needed?
Donor conception was introduced as a means to assist people who otherwise may not be able to conceive children naturally. Secrecy in donor conception was the norm from the inception of the fertility industry in the 1970’s until the early 2000’s. Donors and parents who used donations rarely told others and prior to September 2004, all parties, whether they wanted it or not, were guaranteed lifelong anonymity.
It is now widely accepted that knowledge of one’s heritage and biological links plays a significant role in the development of a person’s identity and self-esteem, and it also enables access to important medical, and genetic information for family planning and avoids unknowingly forming consanguineous relationships.
The DCR stores information from available and verifiable donor conception records in a centrally managed electronic register preserving this information for access by the people it pertains to.
In Australia, registers operate in New South Wales, Western Australia and Victoria. Queensland has no register but recently held a Parliamentary inquiry into donor conception and access to information with the intention of establishing a register in the future.
How are pre and post September 2004 donations different?
Since September 2004, in order to provide a donation, donors have been required to consent to the disclosure of their identifying information to any genetic offspring born from their donation aged 18 and over. Identifying information about these donors will be disclosed immediately to their genetic offspring upon request.
Donations prior to September 2004 were however, provided under the condition of anonymity and it is proposed for this provision to be removed without the donor’s consent to ensure all donor-conceived people have access to information about their genetic heritage. A retrospective donor conception register is in line with changes in societal attitudes to donor conception away from secrecy and shame toward openness and acceptance.
To respect their right to privacy, these donors would be able to choose either immediate release of their information or to defer disclosure for three months* with the support of an intermediary support service. This would provide the donor with the time and support to complete contact preferences in the DCR, adapt to the news they have genetic offspring and inform their family if they have not already done so.
Donors and donor-conceived people would also be able to access government funded intermediary support and counselling services where the request relates to a pre-September 2004 donation.
* The standard timeframe for disclosure is three months, however, there, may be instances where an extension to this timeframe is permitted due to extenuating circumstances
Will the DCR contain full and complete records?
It is unlikely that all records used to create the DCR will be full and complete, and it is expected that information gaps will remain, particularly for the older, historical records. The reasons for this include:
It is anticipated that the information contained in records made since September 2004 when anonymity provisions were removed, will be generally complete. All records made since 2010 are full and complete.
Records prior to September 2004 are held at various locations in South Australia. These must be assessed and verified before being transferred into the DCR. Not all of this information will be verifiable, and it may not be possible to match a donor or donor-conceived person to information in the DCR.
Unfortunately, the DCR may not answer all of the questions that donor-conceived people have about their genetic parentage, however, it will provide significant amounts of information in one central location with the added benefit of ensuring the preservation of these records.
Does disclosure of information require contact between parties?
No. Disclosure of information would be completed electronically via the DCR. Every donor, donor-conceived person aged 18 and over, and recipient parents would have the ability to specify their contact preferences for each relationship in the DCR.
Previous feedback indicates people are generally respectful of other's wishes and that people’s privacy is generally respected. It is recognised that making contact with a person against their wishes would likely jeopardise the possibility of any future contact.
The South Australian Government considered the issue of contact vetos when changes to the Adoptions Act 1988 were being considered in 2017 and the decision was made that no adoption veto system of any kind would be adopted in South Australia.
In addition, any contact veto would be of limited utility in assisting to protect a person’s privacy in today’s environment as it would not be applicable in situations where a person is found through a direct-to-consumer genetic testing service.
What happens if someone breaches the contact preferences?
The Bill does not propose to impose a penalty on those who would breach a contact preference. The ART Act provides that the welfare of the person born as result of the provision of assisted reproductive treatment is to be of paramount importance and a fundamental principle in the operation of the Act. The Act is not considered to be the appropriate place to criminalise or make it an offence to make contact with another whose information has been released through the DCR when there is existing legislation available to control or restrain contact between individuals should it become harassment.
One of the intentions in the establishment of the DCR and a principle underpinning the proposed changes is to normalise donor conception, to validate a person’s donor conception story and to encourage openness about the practice. Penalties for breaches of contact preferences are not aligned with these principles.
Who can access the DCR and what information will they get?
The YourSAy Quick Guide – Who can access the DCR? provides information about who can access what information on the DCR.
Can anyone else access information held by the DCR?
Only those people directly impacted by donor conception (the donor; donor-conceived persons and their direct descendants; and recipient parent(s)) would have access to the information held by the DCR.
In some instances, access may need to be facilitated through a manual process outside of the electronic DCR.
Assisted reproductive treatment clinics already access and update information relating to their clients when they input records and information into the DCR via a secure clinic portal.
Will a donor ever be recognised as a legal parent of the donor-conceived child?
No. Donors are not legal parents under the law. Part 2A of the Family Relationships Act 1975 clearly outlines this. Donors have no parental rights. Donors are not liable to pay child support. Donor-offspring are not eligible to contest the will of the donor.
What impact does direct-to-consumer genetic testing have on donor anonymity?
Multiple online companies offer direct-to-consumer genetic testing for the purpose of genealogy and family history research. Popular DNA testing websites include Ancestry.com, 23andMe, MyHeritage, and FamilyTreeDNA.com. These websites offer services to identify genetic relatedness between other users by matching them with users in their database.
Donor-conceived people are increasingly turning to DNA matching websites to match with genetic relatives and identify their biological parents. Moreover the increasing prevalence of these services means that there is greater likelihood than ever of people accidentally discovering that they are donor-conceived.
Sites allow users who have ‘matched’ to contact each other directly within their systems. Users are then able to deduce further family relationships. In this way donors and donor-conceived people who are not registered on the genetic testing sites can potentially be identified.
These services and their rapid growth raise issues in relation to consent for those who have not registered to be matched through the sites but are identified through the process. The impact on these parties and those who discover unexpected information about their close genetic relationships could potentially be significant.
Will birth certificates show the donor’s name?
The birth certificate issued for a donor-conceived person under 18 (born on or after the commencement of amendments to the Births, Deaths and Marriages Registration Act 1996) would have a notation of their donor-conceived status (excluding the donor’s name). This ensures the birth certificate of future donor-conceived people accurately reflects their genetic heritage from birth and provides them with choice about accessing more information when they are ready.
Where the donor and legal parents’ consent, a donor-conceived person under 18 (born before or after the commencement of amendments) may request a birth certificate that includes the names of their genetic parent(s) and their legal parents.
A donor-conceived person aged 18 and over (born before or after the commencement of amendments) would have birth certificate options including an ‘integrated birth certificate’ which includes the names of their genetic parent(s) and their legal parents; a birth certificate notated with a person’s donor conceived status (excluding the donor’s name); and a standard birth certificate.
Will support services be provided for people accessing the DCR?
Previous consultation has told us that donors and donor-conceived people want choice about whether to engage with support services and the ability to choose their own provider.
An appropriately qualified and experienced intermediary support and counselling service would be engaged by the Government to undertake ‘search’, ‘find’ and ‘outreach’ between parties and counselling available (upon request) for donors, their families and donor-conceived people where it relates to donations provided prior to September 2004.
All participants of the DCR, including those relating to a pre-September 2004 donation, would have choice about any counselling they wish to undertake, enabling them to select the level and type of service, and a provider based on their personal circumstances and preferences. An online ‘library’ accessible outside the DCR would provide resources and links to relevant information for those that prefer not to engage with a service provider.
How is information held by the DCR verified?
The DCR already has data linkages with the South Australian Births, Deaths, and Marriages Register where needed to verify births, identities, and provide donor information from private arrangements.
Information entered into the register by participants such as biographical statements and diagnosed medical conditions is not verifiable.
Need more information or wish to provide feedback?
The YourSAy webpage contains further information and resources about the DCR.
Written comments and feedback on the draft Amendment Bill can be sent to firstname.lastname@example.org by 5.00pm Tuesday, 6 December 2022.