IN 1978, Benedict Clark was a 20-year-old medical student when he heeded his lecturer’s call for sperm donations. In return, he was paid A$10 and promised eternal anonymity. “It seemed like a good thing to do because there was a shortage of sperm donors,” he says. “I felt comfortable knowing that it was anonymous.”
Clark was one of hundreds of people – many of them medical students – who agreed to donate sperm or eggs anonymously in the state of Victoria, Australia, in the 1970s, 80s and 90s. That ended in 1998 when a law required that future donors be identifiable.
Now, in a world first, Victoria has like Clark. Since 1 March, all donor-conceived people have had the legal right to find out their donor’s name and date of birth, even if the donor was promised anonymity. Some barriers remain – including a requirement to formally seek permission before making contact, under threat of a A$7500 fine – but Clark, now a general practitioner in Wonthaggi in southern Victoria, says it is still a “broken promise”. He believes many who donated would not have done so if they had known they could be tracked down later.
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Meanwhile, shortages of donor sperm and eggs are being reported in some countries that have ended anonymity. Other jurisdictions will watch Victoria’s experience with interest. Could it put donation in jeopardy?
When IVF began in the 1970s, the common wisdom was that it would be best for the child and their family to have nothing to do with their sperm or egg donor. Over the years, though, it became clear that knowing your genetic identity is important. In recognition of this, since 1998 all new donors in Victoria have had to consent to being identifiable when their offspring turn 18.
Then, one case in Victoria suggested that more was needed. Narelle Grech – conceived with anonymous sperm before the law changed – was diagnosed with advanced bowel cancer at 28. She said she cried when her doctor told her it was a heritable disease: “Not only for the fact that I was now terminally ill, but also as I most likely inherited this disease from my paternal family and my anonymous sperm donor”, whom she knew only as T5.
“Sperm and egg shortages are being reported. Could Victoria’s experience put donation in jeopardy?”
History lessons
Donor-conceived people had long argued that anonymity should be lifted retroactively: Grech’s case seemed to show why. If she had known she had a family history of early-onset bowel cancer on her donor’s side, she might have been screened at a young age, and the disease caught and treated early.
Cases like hers helped change the law again, and donor-conceived people born in Victoria before 1998 can now find out any information in their donor’s available health records.
However, it turns out that knowing her donor’s identity might not have helped Grech after all. Her donor told New Scientist that he knows of no family history of bowel cancer. Neither does Grech’s mother.
David Thomas at the Garvan Institute of Medical Research in Sydney, Australia, speculates that Grech’s disease may have been due to a unique combination of certain recessive genes whose pairing Grech inherited from her mother and donor.
That being so, there is something that might have helped her better than knowing her donor. Whole-genome sequencing scans your genetic code and looks for mutations that signal an increased risk of cancer, diabetes, heart disease and many other conditions. We don’t know every disease-causing mutation, but a whole-genome test can alert people to known ones that warrant early medical attention.
A mutation that might have caused Grech’s susceptibility is a recessive bowel cancer gene called MUTYH. If an individual carries two copies of it – one from each parent – they are advised to begin bowel cancer screening from the .
A whole-genome test is often more reliable than family histories. It could be even more valuable in places where donors remain largely anonymous, says Thomas. This includes France, Spain, and those born before 2005 in the UK, when the country stopped allowing anonymous donations. In addition, most sperm and egg donations in the US are anonymous, although rules vary at different clinics.
In the past, whole-genome sequencing has mainly been confined to research settings. Now companies like Illumina and Veritas Genetics are offering it. The cost is coming down to US$1000 and will continue to fall, says Thomas.
“When we start sequencing everyone’s genomes, it won’t really matter what your family history says”
So far the test doesn’t identify every risk, but that is coming. “When we start sequencing everyone’s genomes and learn more, we’ll be able to identify all these mutations,” Thomas says. “Then it won’t really matter what your family history says.”
That could be an argument for reversing the drive towards donor disclosure, which may have downsides beyond the discomfort of donors. Some believe that banning anonymous donations in Australia, the UK and New Zealand has led to sperm and egg shortages. For example, Luciano Nardo, a gynaecologist based in the UK, says British fertility clinics increasingly rely on donations imported from Denmark and Spain because it is hard to find donors willing to identify themselves. Because of this, he says the 2005 UK law change should be repealed.
A similar pattern is emerging in , where de-anonymised donation has been correlated with increasing demand for sperm from the US, where no law requires identifiability.
However, that pattern may not show cause and effect. According to the UK Human Fertilisation and Embryology Authority, the number of newly registered donors has actually increased in the UK since anonymous donations were banned. The same trend has happened in Victoria, says Louise Johnson, CEO of the Victorian Assisted Reproductive Treatment Authority, as fertility clinics have become better at recruiting donors.
Another complicating factor is that sperm donors are counted only in countries where they are not anonymous. In Australia and the UK, the number has gone up since donors were made identifiable; in New Zealand, it has held steady. It could still be true that countries with anonymous donations have more donors, but without hard data it is difficult to draw conclusions.
One thing is clear, though – there has been a recent spike in demand for sperm (see graph). One of the main reasons is that more single women and women in same-sex relationships are using donor sperm to have children, Johnson says. In the year 2014-15, 85 per cent of donor sperm in Victoria was used by single and lesbian women.
Johnson does not believe that anonymous donations are the way to boost numbers – especially as anonymity is becoming impossible anyway. In the age of genetic genealogy testing and the internet, many donor-conceived people are tracking down their donors on their own (see “DNA detectives“).
Better options are advertising and promotion, she says. For example, a publicity push in Victoria in 2013-14 almost doubled the number of new sperm donors the following year.
Who am I?
Furthermore, insisting on anonymity assumes that the only reason donor-conceived people look for their donors is medical history. That’s not true, says Johnson. “It’s also about a sense of identity and fully knowing where you come from,” she says. “Many donor-conceived people feel there’s a gaping hole in their life without that information and they experience absolute grief over not knowing.”
Not knowing her donor’s identity while growing up made Chloe Allworthy feel like a puzzle piece was missing. “I had many interests, such as music and dance, that had come out of the blue,” she says. “I knew no one else in the family who was interested in these things, or who had a personality like mine.”
Allworthy met her sperm donor a year ago, after a search agency helped to find him. He welcomed her into his family and they are still in touch. “Finding my donor gave me a real sense of belonging,” she says. She hopes the .
Regardless of the science, the voices of donor-conceived people may inevitably be heard more clearly than those of donors like Benedict Clark. During the campaign to change Victoria’s law, he says, donors could not mount a counter-campaign themselves – to do so, they would have had to identify themselves. So does loss of anonymity reduce willingness to contribute? We may never know.
DNA detectives
Many donor-conceived people are turning to commercial DNA ancestry tests to track down their sperm or egg donor. These tests sequence customers’ DNA and compare it with that of other customers who also want to find relatives. The result is a list of genetic relatives who donor-conceived people can email in search for clues to their donor.
Chloe Allworthy took three such tests, from Family Tree DNA, AncestryDNA and 23andMe. Her mother did likewise, to rule out relatives on her side. The closest match Allworthy found was her donor’s third cousin – according to their DNA – but this relative did not know the donor’s identity. Nevertheless, Allworthy worked out that her donor was probably in South Australia, based on the location of most of his relatives in the database. She enlisted a search agency to help her find him, but that took two years.
Other donor-conceived people have had more luck. In 2005, a 15-year-old boy became the first to find his sperm donor using a DNA ancestry test. He matched two relatives of his donor and used their last names as clues. His mother had a record of his donor’s birthday and birthplace, so the boy was able to match the name with a birth record.
Allworthy thinks stories like this are becoming more common. “So many donor-conceived friends have tracked through DNA databases to locate their donor,” she says.
This article appeared in print under the headline “A promise worth keeping?”
