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Donor sperm from Denmark was sent to several European countries over 15 years. The genetic mutation was only discovered in 2023. Some of these children died from cancer, others have to live with it.
Across Europe, at least 197 children were conceived with the semen of a donor carrying a rare genetic mutation in the TP53 gene, which suppresses the growth of cancer cells, an investigation by and several other European public broadcasters revealed.
The mutation is associated with a high and permanent risk of developing several types of cancer, many of which can appear at a very early age.
The investigation showed that, for more than 15 yearsfamilies purchased sperm from donor number 7069 from the European Semen Bank (ESB), based in Copenhagen, Denmark, through fertility clinics. Thus, a rare and potentially deadly genetic mutation was sold to women in at least 14 European countries and other regions of the world.
It is possible that the number is much higher, as the ESB has not yet released the total number of children conceived with sperm from donor 7069, which was sold to 67 clinics.
Some of these children have already developed cancer, of two types; others have already died, said the biologist specializing in genetic predispositions to cancer Edwige Kasperwhich is monitoring some of the affected families.
From a legal point of view, the sperm bank has an obligation to alert all fertility clinics to whom it exported gametes about any genetic abnormalities that are detected. Clinics, in turn, must inform parents.
However, DW and its partners in the EBU Investigative Journalism Network have become aware of several cases of families who were never officially informed that their children could carry the genetic mutation.
“It was a shock”
The EBU’s investigative journalism team interviewed a mother who purchased sperm from donor 7069. She said that when the phone started ringing one morning in June, she had no idea that the news she would receive would throw her and her teenage daughter into a spiral of medical appointments, exams and fear.
On the other end of the phone, the mother said, was the director of the fertility department of a Belgian clinic she had visited in 2011 for fertility treatment that, at the time, was not available to single mothers in France. She said that the clinic had never contacted her again after her daughter’s conception.
The caller told her that the sperm donor she had used to conceive her daughter carried a rare genetic mutation in the TP53 gene and that her daughter had 50% chance of inheriting the mutationfor which there is no cure or treatment. He added that he was told that it was urgent to carry out a screening test for his daughter to detect the mutation.
“It was a shock,” said the woman, who asked to remain anonymous. “I didn’t notice anything.” Shortly afterwards, he would discover that his daughter had, in fact, inherited the genetic mutation.
After the European Semen Bank detected the mutation in its samples, the donor was permanently blocked in October 2023.
Although the Belgian clinic claims it contacted the woman “as soon as possible”, she says it was reported a year and a half later ESB discovered the mutation because the clinic had migrated its computer system and initially lost its contact details.
“A big frustration”
The mother Dorte Kellermannwho lives in Denmark, said she learned about the case in November 2023 from another person who had used sperm from the same donor, and told DW and her partners that was not contacted — neither by the sperm bank nor by the fertility clinic he used.
Kellerman also said she knows of other single mothers who have turned to the same donor and who stay in touch through a private Facebook group.
The former director of the clinic used by Kellermann said he could not comment on individual cases. Although DW cannot individually verify all reports from the Facebook group, the testimonies read coincide with those from doctors and reports issued by health authorities in several European countries.
The doctor Svetlana Lagercrantza specialist in hereditary cancers, told Danish public broadcaster DR that several of his patients in Sweden were never contacted. He said that they only found out about the mutation through the media. It was “a great frustration”.
The true scale of the problem only became clear at a meeting of hereditary cancer specialists in 2024. According to Lagercrantz, a French colleague was talking about patients who had inherited the TP53 mutation from their sperm donor.
Suddenly, he said, doctors across Europe realized that the cases they thought were isolated were, in fact, coming from a single donor and spreading across the entire continent. Lagercrantz said he was in shock.
Exams for life
The ESB refused to provide the exact number of children conceived with donor 7069’s semen, citing the right to privacy of those involved.
“Since we don’t know how many women have donor children, we are left wondering: ‘Are there any more children??'” said Lagercrantz. For her and her colleagues, it’s “difficult to shake that thought.”
People who discover that they carry the mutation must undergo regular tests throughout their lives. The earlier cancer is detected, the greater the chances of a cure.
Because cancer is a rare disease in children, symptoms can be ignored or misinterpreted when doctors are unaware of the mutation.
Warning signs three years earlier
The ESB website resembles a dating page and allows potential clients to browse donor profiles and, for an additional fee, listen to audio interviews and view childhood photographs.
Customers can pay almost 1000 euros for a genetic test that is more comprehensive than the routine tests that semen undergoes in Denmark.
Donor 7069 introduced himself as a master’s student in Economics, was paid for his donations and donated for the first time in 2005. He was given the pseudonym Boiler and he is a man white, tall, with light brown hair and brown eyes. Your profile dates back to 2007.
O first alert emerged in 2020, according to the ESB, when the bank received notification that a child conceived with Kjeld’s semen had been diagnosed with the TP53 mutation.
The semen was then placed in quarantine until new genetic tests were carried out. The results were negative, as the rare mutation only occurs in some donor sperm. The donor himself never showed symptoms, and his semen returned to the market.
In 2023, the ESB was informed of another child carrying the TP53 mutation. A new round of tests confirmed the presence of the mutation in part of the donated material, despite the donor himself to be unaware and be healthy. The confirmation led to the permanent ban and phone calls to parents across Europe.
Rules vary from country to country
Based in Copenhagen, ESB has become a major name in the global fertility services market and claims to export semen to countries across Europe and even as far away as Afghanistan and Bolivia.
In 2023, ESB, which belongs to the company Perwyn, registered a profit of more than eight million euros. The business is profitable and growing rapidly as more medical treatments become available and women choose to have children later in life, sometimes alone or with other women.
Industry rules vary from country to country. Some impose age limits on treatments or authorize them only for married heterosexual couples. Others allow procedures that are prohibited in other countries.
Some authorize anonymous donations of semen and eggs, which others prohibit. German patients, for example, can travel to Spain for egg donations, which are illegal in their home country.
Some countries impose legal limits on the number of children born from a single donor. Others, like Germany, do not, but banks tend to follow industry guidelines of 15 families per donor.
Em Portugal, there is no limit on children per databut rather rules to limit the genetic impact: the recommendation is that each donor should not be involved in more than eight families.
Although the European Union (EU) has approved new regulations on assisted reproduction and substances of human origin in 2024, these do not include an EU-wide limit on the number of children born to a single donor.
There is also no international database that registers donors and prevents them from selling sperm to various banks.
Potential donors undergo extensive medical examinations and only a small percentage are approved.
The process does not include screening for rare genetic mutations, such as TP53. Having invested heavily in a donor, sperm banks have an incentive economic to maximize profit by selling each donor’s semen to as many families as possible.
Limits on the number of children
On its website, the ESB claims to have a self-imposed limit on the number of families per donor: “Most of our donors have a limit of 75 families, but in selected markets (UK, Ireland, Australia and the Netherlands) we also offer donors with a worldwide limit of 25 families.”
By paying an additional fee it is possible to limit the number of families. For 39 thousand euros you can buy exclusivity.
But the at least 197 children conceived with semen from donor 7069 far exceed the limit declared by the ESB itself, as well as national limits in some cases. In Belgium alone, 53 children were conceived with donor sperm, despite national legislation setting a limit of six women per donor. This led to the opening of an investigation by the Belgian authorities.
In light of these revelations, the ESB said it felt “deeply affected by the case and the impact that the rare TP53 mutation has on several families, children and the donor. They have our deepest solidarity.”
“Unfortunately,” the ESB wrote in its statement, “we found that the limits on the number of families that a donor can benefit were exceeded in some countries, both in the specific case of TP53 and in other cases. This is, in part, due to inadequate reporting by clinics, weak systems and fertility tourism.”
“I feel enormous guilt”
The mother in France who received the call in June discovered that her daughter, now a teenager, had inherited the mutation. Months later, they both continue to deal with what the diagnosis means: a lifetime of regular exams and the constant fear of what they might reveal.
He said he had “absolutely no resentment” towards donor 7069. After all, he did not know he was a carrier of the mutation. “He’s not to blame.” She herself, however, feels “enormous guilt” knowing that, by choosing to conceive in this way, she passed on something potentially fatal to her daughter. “It’s very, very hard.”
