For years, a Danish sperm bank has been selling a man's semen - to women in Europe and beyond. However, no one knew that the donor carried a rare genetic mutation that causes childhood cancer. A DW team investigated the case together with 13 other European media outlets. The investigation found that at least 197 children were conceived with this sperm. And many parents were never told that their children probably carried a life-threatening disease.
"I feel terribly guilty"
Celine (redacted) from Paris is the mother of one of the children conceived with the sperm from Denmark. Her daughter inherited a rare cancer mutation from her donor. "I feel terribly guilty. It's very hard for me to know that my decision to undergo IVF has resulted in something that could potentially be life-threatening for my child," the woman said.
The Belgian clinic the woman used used sperm from the internationally operating European Sperm Bank in Denmark, one of the largest in the world. The donor was registered there under the number 7069 and the name "Kild". He had been providing sperm for 15 years.
In 2023, however, a genetic test revealed that the donor carried the life-threatening TP53 mutation. It dramatically increases the risk of childhood cancer.
From then on, the donor is blocked, and in such cases, the sperm bank is obliged to immediately notify all clinics to which his sperm was supplied. They, in turn, should have informed the parents as soon as possible - so that the children could be tested and it could be determined whether they had inherited the dangerous mutation.
Svetlana Lagercrantz, a professor of cancer genetics from Sweden, told DW: "It is very important that children undergo the appropriate tests and that parents are informed about the risks of cancer and how to react. We have programs that can really save lives".
However, Celine was only informed by the clinic a year and a half after the donor was blocked. The clinic blamed a computer problem for the delay, and tests showed that the French woman's 14-year-old daughter did indeed carry the mutation.
"It was a shock. I just can't believe that in such an important area there can be amateurism, incompetence and frivolity on such a scale. To me, it's just incomprehensible," says Celine. Other mothers - like Dorthe Kellerman from Denmark - say they were not informed at all. She has been in contact on Facebook for years with other parents whose children were born with sperm from donor 7069. She received the information from other mothers who used the same sperm. But not a word from the sperm bank or the clinic. "I wrote to the group to ask if there were others who were not informed - it turned out to be about half."
According to the Danish health service, the sperm from "Kild" from Denmark was exported to 13 other countries, but despite insistent questions, the sperm bank refuses to name the exact number of the donor's heirs - 7,069 - for data protection reasons.
Why were those affected not informed?
However, investigative journalists from DW and other media outlets have collected documents from health services in individual countries and have spoken to doctors, patients and clinics across Europe. The investigations show that at least 197 children were conceived with "Kild" sperm. And experts who have consulted those affected suggest that not everyone is informed to this day.
Professor Svetlana Lagercrantz commented: "It seems very risky and completely wrong for one donor to have so many children. Because this goes beyond normal biological limits and has enormous consequences". Oncogenetics specialist Edwige Kasper from France notes that the children have already developed two different types of cancer and some have already died. In a written statement, the Danish sperm bank said that the donor was tested in full accordance with recognized scientific procedures and laws and that "the authorities and clinics were notified in accordance with legal requirements".
Doctors, self-help groups and sperm banks are now calling for the establishment of an international donor registry and for the introduction of a worldwide limit on the number of children a donor can father. They warn: without strict rules and clear responsibilities, cases like that of donor 7069 could be repeated.
Author: Anke von Leuen