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

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

Some children have already died, and only a minority who inherit the mutation will avoid 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 were informed used donor sperm during fertility treatment in Denmark.

The European Sperm Bank of Denmark, which sold the sperm, said the affected families expressed their “deepest sympathy” and acknowledged that in some countries the sperm had been used to produce too many children.

The investigation was carried out by 14 public broadcasters, including the BBC, as part of the European Broadcasting Union's Investigative Journalism Network.

The sperm was obtained from an anonymous man who was paid to donate as a student starting in 2005. His sperm was then used by women for approximately 17 years.

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

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

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

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

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

“This is a terrible diagnosis,” Professor Claire Turnbull, a cancer geneticist at the Institute of Cancer Research in London, told the BBC. “This is a very difficult diagnosis for a family to live with this risk for the rest of their lives and it is obviously devastating.”

MRIs of the body and brain are needed every year, as well as ultrasounds of the abdomen 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 members are not sick” and such a mutation “is not detected preventively through genetic screening.” They said they “immediately blocked” the donor as soon as the problem with the sperm was discovered.

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

They reported finding 23 variants out of 67 children known at the time. Ten had already been diagnosed with cancer.

Thanks to freedom of information requests and interviews with doctors and patients, we can learn that significantly more children were born from donors.

This figure is at least 197 children, but this may not be the final figure as the data was not collected for 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 children who have already developed two different types of cancer, and some of them have already died at a very young age.”

Celine (not her real name) is a single mother from France whose child was conceived with donor sperm 14 years ago and has a mutation.

She received a call from a fertility clinic she was visiting in Belgium advising her to get her daughter examined.

She says she has “absolutely no hard feelings” towards the donor, but says it is unacceptable that she was given sperm that was “not clean, unsafe and risky”.

And she knows cancer will loom over them for the rest of their lives.

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

“I understand that the likelihood of this happening is high, and when it happens, we will fight, and if there are several of them, we will fight several times.”

Donor sperm was used by 67 reproductive medicine clinics in 14 countries.

The sperm was not sold to UK clinics.

However, as a result of this investigation, Danish authorities on Monday notified the UK Human Fertilization and Embryology Authority (HFEA) that British women had traveled to the country to undergo fertility treatment using donor sperm.

These women were informed.

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

We do not know whether any British women were treated in other countries where donor sperm was distributed.

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

The BBC is choosing not to reveal the donor's identification number as the donor made the donation in good faith and known cases in the UK have already been contacted.

There is no law in the world regarding how many times donor sperm can be used. However, individual countries set their own restrictions.

The European Sperm Bank acknowledged that these restrictions had “unfortunately” been breached in some countries and was “in dialogue with the Danish and Belgian authorities.”

In Belgium, only six families can use one sperm donor. Instead, 38 different women gave birth to 53 donor babies.

The UK limit is 10 families per donor.

Professor Allan Pacey, who formerly ran the Sheffield Sperm Bank and is now deputy vice-president of the Department of Biological Medicine and Health Sciences at the University of Manchester, said countries had become dependent on large international sperm banks, with half of the UK's sperm now imported.

He told the BBC: “We have to import sperm from large international sperm banks who also 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 law on how often sperm can be used.”

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

“You can't test everything, we only accept 1% ​​or 2% of all men who apply to be a sperm donor in the current screening process, so if we make it even more stringent we won't have any sperm donors – that's the balance.”

The case, along with that of a man ordered to stop smoking after fathering 550 children through sperm donation, has again raised questions about whether there should be tougher restrictions.

The European Society of Human Reproduction and Embryology recently proposed limiting the number of donors to 50 families.

However, it said it 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 born from the same donors around the world,” 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 the social and psychological consequences of these hundreds of half-siblings. It could potentially be traumatic,” she 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 baby using donor sperm if the sperm donors are screened according to medical guidelines.”

Sarah Norcross said these cases are “vanishingly rare” when considering the number of children born to a sperm donor.

All the experts we spoke with said that using a licensed clinic means the sperm will be tested for more diseases than most expectant fathers.

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

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

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