A concern has been raised in many countries, including Greece, by the news that a sperm donor who was unknowingly a carrier of a genetic mutation that dramatically increases the risk of cancer has been identified. As a journalistic investigation by 14 organisations revealed yesterday, at least 197 children across Europe have been “born” from this person’s samples, some of whom have sadly already passed away.

According to the investigation, seven clinics in the country received sperm from the Danish donor, but authorities have not responded to requests for information, citing legal confidentiality issues.

The National Assisted Reproduction Authority in our country has issued instructions to inform families who have had a child with the Danish donor’s genetic material. According to information obtained by protothema.gr, Assisted Reproduction Units have been informed to refer families to a geneticist, for counseling and for genetic testing of the children, in order to identify whether they carry the “controversial” gene mutation associated with an increased risk of cancer.

It was reported that as part of the relevant research by the European Broadcasting Union’s investigative journalism network, seven Greek Assisted Reproduction Units used samples from the Danish donor. The same genetic material was distributed to units for 17 years in at least 12 countries outside Greece, including Cyprus, the Netherlands, Germany, Spain, Ireland, Cyprus, the Netherlands, Germany, Ireland and Poland.

According to the research, Danos donated sperm from 2005 to 2022. However, in Greece, until 2017, no Registry was kept in this sensitive field in terms of donors and donors of genetic material, sperm and eggs respectively. The legislator provided that up to 10 children can be born from the same donor, but the picture is clear from the operation of the Registry onwards. Therefore, for the earlier period, from 2005 to 2017, the field is “grey” and units are likely to have no data for the required screening.

It should be noted, however, that so far there is no law defining how many times a donor’s sperm can be used globally. However, each country sets its own limits. The European Sperm Bank accepted that these limits were “unfortunately” violated in some countries and that it was “in dialogue with the authorities in Denmark and Belgium.”

In Belgium, one sperm donor can only be used by six families. Instead, 38 different women gave birth to 53 children from the same donor. The limit in the UK is 10 families per donor.

The European Society for Human Reproduction and Embryology recently proposed a limit of 50 families per donor. However, it said this would not reduce the risk of inheriting rare genetic diseases. Instead, it would be better for the well-being of children who discover they are one of hundreds of half-siblings.

“More needs to be done to reduce the number of families worldwide born to the same donors,” said the director of the Progress Educational Trust, an independent charity for people affected by infertility and genetic diseases. “We don’t fully understand what the social and psychological impact of having hundreds of half-siblings will be. It can be a traumatic experience.”

“You can’t control everything”

Professor Alan Pacey, who ran Sheffield Sperm Bank and is now associate vice-chancellor of the University of Manchester’s School of Biology, Medicine and Health, said countries had become dependent on large international sperm banks and that half of the UK’s sperm is now imported.

“We have to import from big international sperm banks who sell it to other countries because that’s how they make their money, and that’s where the problem starts because there is no international legislation on how often you can use sperm,” he told the BBC however he noted that it would be impossible to make sperm completely safe.

“You can’t control everything, we only accept 1% or 2% of all men who apply to be sperm donors with the current screening process, so if we make it even more stringent, we won’t have any sperm donors at all – that’s where the balance lies.”

What the press inquiry says

The sperm in question came from an anonymous man who was paid to become a donor as a student, starting in 2005, and was then used by women for about 17 years. It was a man who had passed donor screening tests, however the DNA in some of his cells was mutated before he was born.

“This caused damage to the TP53 gene, which has the critical role of preventing cells in the body from becoming cancerous. Most of the donor’s body does not contain the dangerous form of TP53, but up to 20% of his sperm contains it. However, children born from the affected sperm will have the mutation in every cell in their body. This is known as Li Fraumeni syndrome and is accompanied by up to a 90% chance of developing cancer, particularly in childhood, and breast cancer at a later age,” the BBC report said.

“It’s a terrible diagnosis. It’s a very difficult diagnosis for a family, there’s a lifelong burden of living with that risk,” commented cancer geneticist at the Institute of Cancer Research in London, Claire Turnbull.

Children have died

The case began to come to light when doctors examining children with cancer linked to sperm donation raised concerns with the European Society for Human Genetics. They said they had identified 23 children with the mutation out of 67 children known at the time. Ten had already been diagnosed with cancer.

“The survey revealed that the total number is at least 197 children, but it may not be the final number as data from all countries have not been obtained. It is also not known how many of these children inherited the dangerous variant,” the BBC reports. “We have many children who have already developed cancer. We have some children who have already developed two different cancers and some of them have already died at a very young age,” said cancer geneticist at the University Hospital of Rouen, Edwin Casper, who presented the initial data.

The “Celine”

The BBC presents the case of “Celine”, a single mother in France whose child came from donor sperm 14 years ago and has the mutation. The woman received a phone call from the fertility clinic she used in Belgium, urging her to have her daughter tested. She says she has “absolutely no hard feelings” towards the donor, but finds it unacceptable that she was given sperm that was “not pure, not safe, posed a risk.”

“We don’t know when, we don’t know who it will be, and we don’t know how many. I understand there’s a high chance it will happen and when it does, we’ll fight and if there are many, we’ll fight many times,” she added of her child and the risk of cancer.