Sperm from donors carrying cancer-causing genes was used to conceive nearly 200 children

A sperm donor who unknowingly carried a genetic mutation that greatly increases the risk of cancer has fathered at least 197 children in Europe, a major investigation has revealed.

Some children have died, and only a few who inherit the mutation escape cancer during their lifetime.

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

Denmark’s European Sperm Bank, which sold the sperm, said it expressed its “deepest sympathies” to the families affected and acknowledged that the sperm was used to produce too many babies in some countries.

The survey was conducted 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 it starting in 2005 when he was a student. His sperm was then used by women for about 17 years.

He was healthy and passed donor screening exams. However, the DNA in some of his cells had mutated before he was born.

It disrupts the TP53 gene, which plays a crucial role in preventing body cells from becoming cancerous.

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

However, any child produced by affected sperm will have mutations in every cell in their body.

This is called Li Fraumeni syndrome, and the chance of developing cancer, especially in childhood, is as high as 90%, and of developing breast cancer later in life.

Professor Claire Turnbull, a cancer geneticist at the Institute of Cancer Research in London, told the BBC: “It’s a terrible diagnosis. “It’s a very challenging diagnosis for a family to have, and to have the lifelong burden of living with this risk is obviously devastating.”

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

The European Sperm Bank said that “the donor himself and his family were not ill” and that the mutation “could not be preventively detected by genetic screening”. They said they would “stop” the donor “immediately” if they discovered there was something wrong with his sperm.

This year, doctors who see children developing cancer as a result of donated sperm raised concerns with the European Society of Human Genetics.

They reported that 23 of the 67 children known to have been infected at the time were found to have the variant. Ten people have been diagnosed with cancer.

Freedom of Information requests and interviews with doctors and patients have revealed that donors gave birth to more children.

This number is at least 197 children, but this may not be final as data is not yet available from all countries.

It’s unclear how many of these children inherited this dangerous variant.

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

“We have kids who have developed two different cancers and some of them have died at a very young age.”

Céline (pseudonym) is a single mother in France whose child was conceived with donor sperm 14 years ago and has a mutation.

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

She said she had “absolutely no resentment” against the donor, but said it was unacceptable to receive sperm that was “dirty, unsafe and risky”.

She knew cancer would hang over them for the rest of their lives.

“We don’t know when, we don’t know which ones, and we don’t know how many,” she said.

“I know there’s a good chance of that happening, and when it does, we’re going to fight, if it’s a few times, we’re going to fight a few times.”

Donor sperm is used by 67 fertility clinics in 14 countries.

The sperm was not sold to UK clinics.

However, following the investigation, Danish authorities informed Britain’s Human Fertilization and Embryology Authority (HFEA) on Tuesday that British women had traveled to the country to receive fertility treatment using donor sperm.

The 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 had been informed of their donor’s status”.

We are not aware of any British women who have received treatment in other countries where donor sperm was distributed.

Concerned parents are advised to contact the clinic they use and the country’s fertility authority.

The BBC has chosen not to publish the donor’s ID number because his donation was made in good faith and known cases in the UK have been contacted.

There are no laws worldwide that regulate how many times a donor’s sperm can be used. However, individual countries do set their own restrictions.

The European Sperm Bank acknowledged that it was “unfortunate” that some countries were violating the restrictions and was “in dialogue with the Danish and Belgian authorities.”

In Belgium, one sperm donor can only be used by six families. Instead, 38 different women gave birth to 53 children to their donors.

The UK limit is 10 families per donor.

Professor Alan Pacey, who once ran the Sheffield Sperm Bank and is now deputy dean of the School of Biomedicine and Health at the University of Manchester, said countries had become dependent on large international sperm banks and half of the UK’s sperm was now imported.

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

He said the case was “horrible” for everyone involved but it was impossible to make sperm completely safe.

“You can’t screen everything and in the current screening arrangements we only accept 1 or 2 per cent of all men who apply to be sperm donors, so if we were more rigorous we wouldn’t have any sperm donors – that’s the balance.”

The case, along with that of a man who was ordered to stop donating sperm for fathering 550 children, has once again raised questions about whether tighter restrictions should be in place.

The European Society of Human Reproduction and Embryology recently recommended a cap of 50 families per donor.

However, it said this would not reduce the risk of inheriting a rare genetic disease.

Instead, it would be better for those children who find themselves one of hundreds of half-siblings.

“More needs to be done to reduce the number of families born from the same donor globally,” said Sarah Norcross, director of the Progress Educational Trust, an independent charity that provides services for people affected by infertility and genetic conditions.

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

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

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

Sarah Norcross said these cases were “extremely rare” given the number of children born to sperm donors.

All the experts we spoke to said using a licensed clinic means sperm can be screened for more diseases than most expectant fathers can.

Professor Pacey said he would ask “Is this a British donor or a donor from somewhere else?”

“If it’s a donor from somewhere else, I think it’s reasonable to ask if that donor has been used before? Or how many times that donor will be used.”

If you or someone you know is affected by the issue raised, details of help and support are available at: BBC Action Line.