Sperm from a donor with a cancer gene was used to conceive almost 200 children

A sperm donor who unknowingly harbored a genetic mutation that dramatically increases the risk of cancer has fathered at least 197 children across Europe, major research has revealed.

Some children have already died and only a minority who inherit the mutation will escape cancer during their lifetime.

The sperm was not sold to UK clinics, but the BBC can confirm that a “very small” number of British families, who have been informed, used the donor sperm while receiving fertility treatments in Denmark.

Denmark’s European Sperm Bank, which sold the sperm, said the affected families had its “deepest condolences” and admitted the sperm was used to produce too many babies in some countries.

The investigation has been carried out by 14 public service broadcasters, including the BBC, as part of the European Broadcasting Union’s Investigative Journalism Network.

The sperm came from an anonymous man who was paid to donate when he was a student, starting in 2005. His sperm was used by women for approximately 17 years.

He is healthy and passed the donor selection controls. However, the DNA in some of his cells mutated before he was born.

It damages the TP53 gene, which has the crucial function of preventing the body’s cells from becoming cancerous.

Most of the donor’s body does not contain the dangerous form of TP53, but up to 20% of their sperm does.

However, any child born from affected sperm will have the mutation in every cell of their body.

This is known as Li Fraumeni syndrome and carries an up to 90% chance of developing cancer, especially during childhood, as well as breast cancer later in life.

“It’s a terrible diagnosis,” Professor Clare Turnbull, a cancer geneticist at the Institute of Cancer Research in London, told the BBC. “It is a very difficult diagnosis to reach a family, there is a lifelong burden of living with that risk, it is clearly devastating.”

MRIs of the body and brain, as well as abdominal ultrasounds, are needed each year to try to detect tumors. Women often choose to have their breasts removed to reduce the risk of cancer.

The European Sperm Bank stated that “the donor and his relatives are not sick” and that this mutation “is not detected preventively by genetic analysis.” They said they “immediately blocked” the donor once the problem with his sperm was discovered.

Doctors caring for children with cancer linked to sperm donation raised concerns this year at the European Society of Human Genetics.

They reported that they had found 23 with the variant out of 67 known children at the time. Ten had already been diagnosed with cancer.

Through freedom of information requests and interviews with doctors and patients, we are able to reveal that substantially more children were born to the donor.

The figure is at least 197 children, but that may not be the definitive figure since data has not been obtained from all countries.

It is also unknown how many of these children inherited the dangerous variant.

Dr Edwige Kasper, a cancer geneticist at Rouen University Hospital in France, who presented the initial data, told the inquiry: “We have many children who have already developed cancer.

“We have some children who have already developed two different types of cancer and some of them have already died at a very young age.”

Céline, not her real name, is a single mother in France whose son was conceived with donor sperm 14 years ago and has the mutation.

She received a call from the fertility clinic she used in Belgium urging her to have her daughter tested.

She says she has “absolutely no hard feelings” toward the donor, but says it was unacceptable that she had been given sperm that “wasn’t clean, wasn’t safe and carried a risk.”

And he knows that cancer will stalk them for the rest of their lives.

“We don’t know when, we don’t know which one and we don’t know how many,” he says.

“I understand that there is a high probability that it will happen and when it happens, we will fight and if there are several of them, we will fight several times.”

The donor sperm was used in 67 fertility clinics in 14 countries.

The sperm were not sold to UK clinics.

However, as a result of this investigation, authorities in Denmark notified the UK’s Human Fertilization and Embryology Authority (HFEA) on Tuesday that British women had traveled to the country to receive fertility treatment using donor sperm.

Those women have been informed.

Peter Thompson, chief executive of the HFEA, said a “very small number” of women were affected and “the Danish clinic where they were treated informed them about the donor”.

We do not know if any British women received treatment in other countries where donor sperm were distributed.

Concerned parents are advised to contact the clinic they used and the fertility authority in that country.

The BBC has decided not to reveal the donor’s identification number because he donated in good faith and has contacted known cases in the UK.

There is no law on how many times donor sperm can be used worldwide. However, each country sets its own limits.

The European Sperm Bank admitted that these limits have “unfortunately” been exceeded in some countries and is “in dialogue with the authorities of Denmark and Belgium.”

In Belgium, it is assumed that a single sperm donor can only be used by six families. Instead, 38 different women produced 53 donor children.

The UK limit is 10 families per donor.

Professor Allan Pacey, who used to run the Sheffield sperm bank and is now deputy vice-president of the School of Biology, Medicine and Health at the University of Manchester, said countries had become dependent on large international sperm banks and half of the UK’s sperm were now imported.

He told the BBC: “We have to import sperm from big international banks who also sell it to other countries, because that’s how they make money, and that’s where the problem starts, because there is no international law on how often sperm can be used.”

He said the case was “terrible” for everyone involved, but it would be impossible to make the sperm completely safe.

“You can’t screen everything, we only accept 1% ​​or 2% of all men who apply to be sperm donors in the current screening system, so if we made it even stricter we wouldn’t have any sperm donors – that’s where the balance is.”

This case, along with that of a man who was ordered to stop doing so after fathering 550 children through sperm donation, has once again raised questions about whether there should be stricter limits.

The European Society of Human Reproduction and Embryology has recently suggested a limit of 50 families per donor.

However, he said this would not reduce the risk of inheriting rare genetic diseases.

Rather, it would be better for the well-being of the children who discover that they are one of hundreds of half-siblings.

“More needs to be done to reduce the number of families being born around the world to the same donors,” said Sarah Norcross, director of the Progress Educational Trust, an independent charity for people affected by infertility and genetic conditions.

“We don’t fully understand what the social and psychological implications will be of having these hundreds of half-siblings. It can be potentially traumatic,” he told BBC News.

The European Sperm Bank said: “It is important, especially in light of this case, to remember that thousands of women and couples do not have the opportunity to have a child without the help of donor sperm.

“It is generally safer to have a child with the help of donor sperm if sperm donors are screened according to medical guidelines.”

Sarah Norcross said these cases were “extremely rare” when considering the number of children born from a sperm donor.

All the experts we spoke to said that using a licensed clinic meant that the sperm would be tested for more diseases than most expectant parents.

Professor Pacey said he would ask “is this a donor from the UK or elsewhere?”

“If it’s a donor from somewhere else, I think it’s legitimate to ask questions about whether this donor has been used before or how many times will this donor be used?”

If you or someone you know has been affected by the issues raised, help and support details are available at BBC action line.