Donor-conceived adults are speaking out about their experiences, but will governments listen?
Today’s post is from Giselle Newton (@newtonatron) from the Centre for Social Research in Health, UNSW Sydney, about her research into donor-conceived people’s experiences, views and support needs in a digital era. She reflects on strengthening policy and legislation in this fraught and quickly-evolving policy area.
“It was in 1995 when I found out. There was no internet. There was nothing. I had nothing whatsoever. When I did reach out to clinics I was met with, ‘No. Records are gone. You have nothing.’ I was never offered counselling. I was never offered to come in and speak to anybody. I was never offered a kind ear or a kind word. It was an instant shutdown.”
This testimony was offered to members of the Legal Affairs and Safety Committee at the public hearing of the Queensland Inquiry into Matters Relating to Donor Conception Information last month by donor-conceived Queenslander Kerri Favarato. The Queensland inquiry is one of several currently unfolding in jurisdictions across Australia, with South Australia and Western Australia currently developing amendments to their legislation, and as of last week, members of the ACT Legislative Assembly are pushing for legislative reform. However, this reform, or introduction of legislation for the first time, requires understanding past practices and how they have affected, and continue to affect, donor-conceived people like Kerri. So, what do we know about the history of donor conception in Australia?
Behind closed (doctors’) doors: Donor conception and a history of secrecy
Donor conception is an assisted reproductive technique whereby pregnancy is achieved using sperm or eggs of a third-party provider. Donor conception has been practiced in Australia since at least the 1940s. Yet up until the end of last century, doctors promised donors anonymity and encouraged parents to keep their fertility treatments a secret, including from their children. This choice was thought to protect the child from stigma, the parents from the shame of infertility, and the doctor from legal uncertainty and public scrutiny. Poor or incomplete record keeping, and modification and destruction of records, is also well documented in donor conception. Due to this complex history, it is unclear how many people have been conceived in this way in Australia.
The rise of new reproductive and digital technologies
With the development of In Vitro Fertilisation (IVF) in the late 1970s, media attention was drawn to assisted reproductive technologies. Increasingly, social attitudes towards secrecy within the family were shifting, with single-parent and queer families becoming more visible and the rights of the child being championed on the world stage. These changes resulted in more donor-conceived people learning about this aspect of their identity during childhood and others learning (unexpectedly) later in their life. And from the year 2000, with the rise of the internet, donor-conceived peers were able to search for others ‘like them’ and began interacting via internet forums. Since then, digital technologies such as social media and direct-to-consumer DNA testing have afforded donor conceived people new opportunities to seek information and negotiate this identity.
Belonging at home, online and in society
Our recent multi-method study with Australian donor-conceived adults has explored what it means to belong among family, peers and in broader society for donor-conceived adults. We analysed three sources of data: from the 2010 Senate Committee inquiry into donor conception in Australia, responses to a national online survey, and semi-structured interviews. Findings revealed the range of ways donor-conceived adults are using digital technologies to bond, educate, sleuth and strategise.
For example, our work has demonstrated how closed Facebook groups, including meme groups, allow donor-conceived people a space for community, criticism and coping.
"Genie and donor-conceived person" - meme provided by participant
Elsewhere, we have explored how, on publicly oriented platforms like TikTok, donor-conceived people are educating the public about their experiences and how this content is often entangled with that of other stakeholders, such as those of people wanting to have a child through donor conception.
Another article from the study showed that many donor-conceived people do not trust medical institutions and regulatory authorities. Instead, direct-to-consumer DNA testing is often viewed as a legitimate avenue to accessing information and allows donor-conceived people to sidestep formal avenues and gatekeeping.
Yet there are limits to these technologies, and the ongoing consequences of anonymity are still felt among many donor-conceived adults. Indeed, some experience a kind of familial haunting from not having access to information about their biological family members and medical histories.
But, as in the opening excerpt above, donor-conceived people are increasingly speaking out in institutional contexts and positioning themselves as an authority on donor conception, an ensuring there is openness and accountability in donor conception. Recently, the first Australian peak organisation for donor-conceived people was established, offering support, education and advocacy. More than ever before, decision-makers in policy and legal contexts must meaningfully engage with donor-conceived people in line with principles of “nothing about us without us”.
Strengthening legislation and policy in an evolving landscape: where to from here?
Donor-conceived people require accurate and detailed information about their medical histories and biological family members (donors and donor siblings).
However, a large portion of donor-conceived adults are not afforded this information. In Australia, legislation on donor conception remains a complex patchwork whereby donor-conceived people’s rights to access information are determined by year and jurisdiction of birth. Many states and territories still do not have any legislation on assisted reproduction and donor conception despite the 2010 Senate Committee Inquiry into Donor Conception urging each state and territory to establish centralised registers ‘as a matter of priority’.
In 2016, however, world-first legislation in Victoria retrospectively granted all donor-conceived people access to information about their donor (regardless of consent of the donor).
More recently, South Australia built upon this blueprint by allowing information sharing between siblings and by removing contact vetoes (in Victoria donor-conceived people may be fined up to $8,000 for seeking contact with their biological parent). Remaining states and territories need to catch up.
Other challenges yet to be addressed are regulating donor conception in private contexts in which donors are ignoring family limits and donating to dozens of families. In a similar vein, importation of gametes raises issues for ensuring gamete donations are altruistic, counselling with donors is undertaken before consent, and family limits are upheld. Some Australians are also sidestepping domestic legislation by travelling to conceive overseas. For their future donor-conceived children, this may mean dealing with hundreds of siblings or a biological parent that does not speak their language.
Assisted reproduction is a constantly shifting field in which the technologies, industry and legislation are evolving as those created grow up. However, looking back and moving forward, we know that decision-making must be guided by the rights and needs of those most affected, the donor-conceived.
This research was made possible by the donor-conceived adults who shared their experiences. Thank you to Kerri Favarato who gave permission to include this excerpt. Thank you to Professor Christy Newman, Associate Professor Michele Zappavigna and Dr Kerryn Drysdale who guided this doctoral project. Giselle Newton is supported by an Australian Government Research Training Program Scholarship.
Posted by @DrSophieYates