How the law has failed children of anonymous sperm donors

Sarah Dingle is one of the many Australian donor conceived people created under an anonymous donation regime. Now she's ...

Sarah Dingle is one of the many Australian donor conceived people created under an anonymous donation regime. Now she's fighting for the right to know her biological background. Photo: Steven Siewert

 Something happened over the weekend in Melbourne which has never happened anywhere before in the world. This is the future come home to roost. For decades, medicine has created miracle babies, while pretending that biology doesn't matter. The time for that pretence is over. Now it's time for the truth.

On Saturday, donor conceived offspring gathered from all around Australia – and some came from overseas – for the country's first National Conference for Donor Conceived People. (We call ourselves 'DC', which is a less socially awkward shorthand for 'people conceived using donor sperm or a donated egg'.) It's the first time in the world that such a gathering has been organised by DC people themselves. You know what that says? The experiment has grown up. Forty years after this industry really got going, we're no longer just donor conceived children. We are donor conceived children, teens, and adults, some with children of our own. Just like adoptees, we want to know who our biological families are, and what our medical history is. We want to know whose genes we have. We have a right to it.

This desire to know the truth shouldn't threaten anyone. We love the people who raised us. They are also our families, and for many of us, they are the most important families we will ever have. But it's utter nonsense to say that donor conceived people have a finite amount of love to give. Finding out you have a lost half-sister doesn't mean you love your other sisters less. And I've been told I could have up to 20 half-sisters to find.

I'm one of the many Australian donor conceived people created under an anonymous donation regime. Anonymous donation has now been outlawed in my state of NSW – but that only happened in 2010. At a national level, there are no laws regulating donor conception at all, and half the states and territories have no laws either. It's estimated that there are around 60,000 donor conceived people in Australia today. No one knows for sure.

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Anonymous donation regimes have left their mark around the country. Donors are often anonymised by assigning them a code. But for some clinics, even that wasn't enough. Those codes, a fragile record of the truth, have been treated in a scandalous fashion. Like a number of my friends, my donor code has been destroyed. It was deliberately cut out of pages in a medical file during a systematic purge of donor codes at Sydney's public Royal North Shore Hospital. Without a code I can't find my biological father, or half siblings, or even basic non-identifying family medical history.

After I revealed the code destruction in an article for Good Weekend, the RNSH conducted an investigation. Its findings should have terrified anyone with a vague interest in an accountable fertility sector, or an ethical public hospital system. At my clinic alone, codes were deliberately destroyed for 88 pregnancies. Why those 88? Was it all the same donor? Are we all related? What on earth was going on? The RNSH also claimed that this was not "malicious management of records". I was gobsmacked.

Not a single RNSH staff member from the time has been held responsible. This is the low regard that society has for donor conceived people. We are treated like unregulated products. Money, and careers, have been made out of our existence. Against that, our humanity doesn't count.

Now, with so many of us grown up, DC people are afraid that at some point, two half siblings will have a child. We have real fears that some of us may have already dated half brothers or sisters. We worry that in our genes there is something that will kill us young, or condemn us to preventable disease.

Two years ago my friend Narelle Grech died of bowel cancer, aged 30. She had been diagnosed with terminal bowel cancer just two years before her death. For Rel, the combination of her sperm donor's genes with her mother's meant that she was susceptible to early onset, and ultimately incurable bowel cancer. Rel was conceived under an anonymous donation regime. Had she known of genetic risk, she could have been screened for the cancer starting at age 15.

Just like it did for adoptees, Australia must recognise that all its DC people have a right to know who their family is – no matter what prior arrangements were made by governments, doctors, or the billion-dollar fertility industry.

Not all donor conceived people want to find their families straight away. Some may need counselling through the process. (Believe me, while living such a distressing mess, DC people already act as counsellors for each other.) Some may prefer written contact to start with. Some may only want family medical history. But the point is that, like adoptees, all DC people have a right to identity. We have the right to know who our family is, whether we choose to make contact or not.

We had no say in the circumstances of our conception, but governments, doctors, nurses and businesses did. They decided, without us, that we were not allowed to know our family. But our biological families are ours by birthright. That should, and must, be respected in law.