Voluntary register ‘completely useless’

At age 27, Sarah Dingle discovered that the man who brought her up was not her biological father.

She was celebrating Easter at a Vietnamese restaurant when her mother dropped into conversation that she and her father had used a sperm donor. They had no idea who he was.

It sparked a decade-long investigation by the ABC journalist, which uncovered shocking practices in the fertility industry, including as part of her own conception — Sydney’s Royal North Shore Hospital had destroyed donor codes, the vital information that linked donors with the babies they helped make.

In her new book, Brave New Humans, she interviews the daughter of Noelene Cliff, who underwent three rounds of artificial insemination in the 1980s, using three different donors at Sydney’s Westmead Hospital. She was infected by HIV positive sperm from the first donor and died of Aids in 1991. Three other women were infected using donor semen at Westmead. All died.

In another case, Dingle interviewed Natalie Parker, who donated an embryo to a woman she met online, and planned to have a relationship with any resulting child. She and her husband had been through IVF to have their own two boys and had three leftover embryos.

They went through a fertility clinic, signed agreements and had counselling, but after the transfer, they never heard from the woman. She had told the clinic she had had bleeding, but Parker went through the woman’s Facebook page months later and saw a photo of the resulting child, who looked a lot like her younger son. There is no way of knowing if the boy will ever know he is donor-conceived.

“So if a woman can have her child stolen in the past five or six years, that tells me that the fertility industry in a First World country like Australia is not doing okay,” Dingle tells the Herald on Sunday. “None of these problems have been fixed.”

And, she says, stories like this are not unique to Australia, where regulation of the fertility industry is left up to states and territories, creating a massive inconsistency, with half of them having no laws.

“I’m not a conspiracist, but honestly, the stories that donorconceived people tell around the world are so similar you’ve got to wonder if individuals at organisations are swapping notes on how to destroy records.

“It’s similar no matter where you are . . . There’s fires, flood or simply they were never kept in the first place. There are so many fires that occur in fertility clinics . . . it’s very, very strange.”

Dingle’s state of New South Wales has a voluntary register like New Zealand for donor-conceived people born before January 1, 2010. But she describes it as “near useless, if not completely useless”. It is poorly advertised and those wanting to join it need to provide details of their conception, but they can get those records only if their mother, as the patient, agrees. Even then, the state applies to the clinic to verify the information, which doesn’t work in cases like hers when the files have been tampered with.

In 2015, she asked how many successful matches had been made on the register and was told just one.

She asked again when writing her book in 2020, and was told “we do not keep that information”.

“This is a register set up with the express purpose of making matches and it does seem to me that if you are going to do that, you should keep a record of whether you are actually doing it with any success.”

Western Australia also has a voluntary register but Dingle spoke to a woman who was on it for 14 years alongside her half brother and they were never matched.

She has a message for our lawmakers for when our mandatory register takes effect: “Support has to be done properly.” In Victoria, counselling is mandatory before you can access your own records, which she described as “a slap in the face”.

“It tells us once again that we are not to be trusted and we’re infantilised. Donors, of course, don’t have to go through any counselling to access their data.”

Donor offspring should also be able to nominate their own counsellors. Too often, counsellors working for the fertility clinics are offered.

In November 2019, Dingle presented at the United Nations in Geneva, Switzerland, to commemorate 30 years of the Convention on the Rights of the Child, an international human rights treaty signed by world leaders. It was the first time they had heard from a group of the people created by the practices.

She told the room: “For donor conception and surrogacy to be ethical, all children must have a legal right to know their biological parents, all of their biological siblings, and also their birth mother, whether or not she is also a biological parent. They have a right to know that none of those parties were paid, compensated or otherwise rewarded.”

The UN delegation drafted principles for donor conception and surrogacy to provide minimum standards for laws and practice in nation states where surrogacy and/ or donor conception are already permitted or tolerated. The principles require strict regulation of such practices to uphold the human rights and best interests of people born as a result.

After struggling to enact change through official channels, Dingle hopes her book will bring the general public into the discussion. “All politicians, the law, medicine — none of those powerful sectors really care.”

There are so many fires that occur in fertility clinics . . . it’s very, very strange. Sarah Dingle