Delivering better laws for making babies
Infertility affects one in six Australian women and is the source of great personal suffering for those wanting to build a family. For many, that distress has been compounded by complex and inconsistent rules surrounding fertility treatments.
However, the work of a group of UTS Law researchers is helping to untangle the web of state and federal law, national ethical guidance and local clinical practice, easing the way for the 40,000 Australian women who turn to assisted reproduction annually.
Research by Professors Jenni Millbank, Isabel Karpin and Anita Stuhmcke has put the focus on the experiences and needs of the patients themselves, helping to bring about significant changes to the rules governing assisted reproduction and surrogacy over the past decade.
“There has been a profound disrespect, I think, in law, for how intimate a process fertility treatment is," says Professor Millbank. “It's a health treatment but a very particular type of health treatment, because it's about family building.”
Stored embryos … have unique meaning to the women who underwent treatment to create them.
Prof Jenni Millbank, UTS Law
The researchers’ work has highlighted the need for more flexible and adaptable legislation and guidelines, at state and national levels. They have advocated over the years for regulation that recognises the subjective patient experience – arguing that what embryos mean to patients should hold more weight than arbitrary rules and limits.
“Historically, legal regulation was quite paternalistic and imposed very much from above,” Professor Millbank says. “It's only really been through this century that people have said, ‘Gosh, this is actually a technology that’s used by a huge number of Australian families who need to have some say over how it operates and how it’s regulated’.”
In NSW, for instance, the researchers drew attention to the fact that rules limiting how many families – in effect, women – a sperm donor could donate to didn’t account for the impact on same-sex female couples. Both women in a same-sex couple were being counted, halving the couple’s opportunity to use the one donor for all their children.
Their research has also contributed to extended periods for people to make decisions about stored embryos. Previously, time limits in some cases as short as five years determined the embryos’ destruction. In addition, destruction protocols gave people little to no control over embryo disposal once they had completed their families. National guidelines now allow for patient involvement.
One woman undertaking IVF treatment shared her perspective with the researchers that her embryos remained “part” of her despite being harvested and held physically external to her. “I don’t think there's any separation … except a clinical intervention that takes place ... but what you've now got is this other [organisation] saying, well this is how you're going to use your body parts,” she said.
On the donor side, the researchers found that although counsellors and clinicians presented embryo donation as a “difficult” and a high-risk choice, for most potential donors it was seen as the most attractive option.
“It was a clear-cut decision for us that we had these embryos, we weren't going to use them, and someone else would value them immensely,” said one woman, who nevertheless had been prevented from donating.
In NSW, the team’s research has supported changes to the rules so that donor-conceived people are now able to access a broader range of non-identifying information, allowing them to understand more about their biological history. It also fed into a decision by Victoria to establish a specialist body for donor information and identify release.
In addition, the research has helped carry changes in a number of states meaning more couples can now make use of surrogacy.
It was also reflected in substantial changes to the national ethical guidelines on assisted reproduction, with the National Health and Medical Research Council (NHMRC) revising its advice in areas such as surrogacy, sperm, egg and embryo donation, and IVF consent.
These sorts of changes ensure people have greater choice and autonomy, within ethical limits, Professor Millbank says.
“Our hope is that our combined research has contributed to the understanding of stored human embryos not as entities of moral significance in themselves but as having unique meaning to the women who underwent treatment to create them,” she says. “Our aim has been to facilitate the development of legal regimes that respond more sensitively and flexibly to the needs and experiences of patients.”