Qld agrees to allow donor-conceived people the right to know the identity of their donor. Here’s why it's important

Last week, the Queensland government accepted in principle recommendations from a 2022 inquiry^[1] into the rights of donor-conceived people.

Donor conception is a technique to facilitate pregnancy using donated sperm and/or eggs.

Queensland is among the least progressive jurisdictions in Australia on donor conception. To date, it has no legislation governing donor conception, despite a senate inquiry^[2] recommending in 2011 that jurisdictions which didn’t yet have a statutory scheme in place should establish one “as a matter of priority”.

The government’s response to the inquiry indicated^[3] it supports allowing donor-conceived people to know the identity of their donor and siblings once they turn 18, regardless of when they were born.

In 2016, Victoria passed legislation^[4] enabling donor-conceived people to access identifying information about their donor. South Australia^[5] is also currently considering amendments to improve the operation of its donor conception register, and Western Australia is developing new legislation following a 2019 independent review^[6].

Here’s why the Queensland government should move to implement the recommendations of the inquiry as soon as practicable.

Changing attitudes

Donor conception has been practised in Australia since at least the 1940s. Historically, doctors promised donors anonymity and encouraged parents to keep their treatment a secret.

But attitudes have changed^[7]. We now know anonymity isn’t in the best interests of donor-conceived people. Best practice is to allow donor-conceived people to have identifying information about their donors, regardless of when they were born.

Identifying information includes the donor’s full name, and is in addition to non-identifying information already provided such as cultural background, occupation and physical features. Many donors now also support this^[8].

Read more: Victoria's world-first change to share sperm or egg donors' names with children^[9]

Since 2004, ethical guidelines^[10] by Australia’s peak medical and health research body have prohibited the anonymous donation of sperm and eggs. However, these guidelines don’t have the legal force of legislation and don’t have an impact on those conceived before 2004.

Research with donor-conceived people^[11], and evidence provided to parliamentary inquiries, has shown fertility clinics are often unable and/or unwilling to provide accurate information. This might include, for example, denying donor-conceived people access to donor conception records even when donors have consented, and giving incorrect information about siblings.

Over the years, many donor conception records have been modified or destroyed^[12]. This has often occurred to protect anonymity, but is also due to questionable past practices such as sperm mixing, donors’ identities not being verified, and recruitment of medical students in exchange for course credits.

5 reasons for urgent reform

Establishing a centralised, government-held register would bring Queensland in line with other jurisdictions that already recognise the rights of donor-conceived people. This includes Victoria, South Australia, NSW (for those born after 2010), and Western Australia (for those born after 2004).

This will also help pave the way for an equitable national standard and a national donor conception register, an approach supported by the Fertility Society of Australia and New Zealand^[13].

There are five reasons legislating this as soon as possible in Queensland is essential.

1. Legislation needs to respond to technological advances. Donor-conceived people are already able to identify donors^[14] through informal channels following the rapid growth of direct-to-consumer DNA testing, coupled with social media. But DNA data is highly sensitive and donor-conceived people should have official pathways to information that don’t require them to exchange their personal data^[15] for information to large corporations.

2. Donor-conceived people who find out about their conception during early childhood have more positive attitudes towards their conception and better wellbeing^[16] compared to donor-conceived people who discover later in life. One of the inquiry’s recommendations was that birth certificates be annotated when a person is donor-conceived. This would discourage deception. The UK government is currently considering allowing donor-conceived people to contact their donor before 18^[17].

3. Many donor-conceived people^[18] want to meet their donor and donor siblings. In everyday conversations, we often discuss our families, genetics, and resemblance. It’s unsurprising that donor-conceived people are interested in knowing about their genetic heritage to understand themselves and their cultural background. Knowing who one’s siblings are is also important to avoid sexual relationships^[19].

4. Dealing with health issues often requires knowledge of one’s genetic heritage. If a donor-conceived person learns of a genetic condition, they may want to notify their donor and siblings.

5. Many donors want to find out about^[20], and meet, their donor-conceived (adult) children. Many donors make themselves identifiable^[21] to their donor-conceived children. Reasons may include believing the donor-conceived person is entitled to information about their identity, wanting to provide avenues to seek information, or curiosity about how many people were conceived following their donation and their identities.

Some people have concerns about removing anonymity. But the conditions of anonymity promised by doctors were never legally binding. This legislation is retrospectively being applied to a period when there was no legislation.

Another concern is that it could jeopardise the number of people willing to donate sperm or eggs. But research suggests shifts from anonymous to identifiable donation aren’t detrimental^[22] to donor numbers. Rather, the type of people who donate changes. For example, this may encourage more donors in their 30s rather than late teens or early 20s.

Read more: DNA test kits are changing donor-conceived families^[23]

Donor-conceived advocacy

Donor-conceived people have long been speaking^[24] out^[25] to agitate for reform in donor conception.

This reform is the result of decades of advocacy^[26], and represents a key moment to enshrine donor-conceived people’s rights in legislation.

If this article raises issues for you and you need support, please contact Donor Conceived Australia^[27].

References

1. ^{^} inquiry (www.parliament.qld.gov.au)
2. ^{^} inquiry (www.aph.gov.au)
3. ^{^} indicated (www.theguardian.com)
4. ^{^} passed legislation (aifs.gov.au)
5. ^{^} South Australia (yoursay.sa.gov.au)
6. ^{^} 2019 independent review (www.health.wa.gov.au)
7. ^{^} attitudes have changed (link.springer.com)
8. ^{^} now also support this (academic.oup.com)
9. ^{^} Victoria's world-first change to share sperm or egg donors' names with children (theconversation.com)
10. ^{^} ethical guidelines (www.nhmrc.gov.au)
11. ^{^} with donor-conceived people (journals.sagepub.com)
12. ^{^} have been modified or destroyed (www.parliament.vic.gov.au)
13. ^{^} supported by the Fertility Society of Australia and New Zealand (www.abc.net.au)
14. ^{^} already able to identify donors (theconversation.com)
15. ^{^} exchange their personal data (theconversation.com)
16. ^{^} more positive attitudes towards their conception and better wellbeing (www.researchgate.net)
17. ^{^} allowing donor-conceived people to contact their donor before 18 (www.theguardian.com)
18. ^{^} donor-conceived people (www.sciencedirect.com)
19. ^{^} important to avoid sexual relationships (www.progress.org.uk)
20. ^{^} to find out about (www.abc.net.au)
21. ^{^} make themselves identifiable (www.tandfonline.com)
22. ^{^} aren’t detrimental (pubmed.ncbi.nlm.nih.gov)
23. ^{^} DNA test kits are changing donor-conceived families (theconversation.com)
24. ^{^} speaking (journals.sagepub.com)
25. ^{^} out (www.change.org)
26. ^{^} decades of advocacy (www.theguardian.com)
27. ^{^} Donor Conceived Australia (donorconceivedaustralia.org.au)