At least 197 children, some of whom are British, have been placed at high risk of cancer because they were conceived using a Danish sperm donor who had a faulty gene.
Already, some of the children have developed cancer and died. All of those affected will need regular scans to check for tumours for the rest of their lives.
It is a medical catastrophe that could have been avoided. For years, doctors have been calling for fertility clinics to cap the number of children who can be conceived from the same sperm or egg donor.
“It’s not natural for a man to have [so many] children,” said Dr Edwige Kasper, a cancer geneticist at Rouen University Hospital in France, who helped discover the scandal. “In case of genetic disease, it’s an artificial dissemination of the disease.”
Unlike in some other cases where men have conceived unusually high numbers of children by DIY sperm donation, this Danish man followed all the rules. He used a legitimate sperm bank and was truthful about his health and family history.
He did not know about the cancer mutation because it was not affecting his own health. It must have arisen during his own development in the womb, because just a fifth of his sperm carry the faulty gene.
The mutation is rare, so clinics do not test for it when checking donated sperm.
Mutation gives 90 per cent cancer risk
The gene, called TP53, makes a protein that normally helps kill cancer cells. When mutated, as in this case, it can lead to a range of tumours, including in the brain, muscles and breasts.
Those who carry the gene have a 90 per cent chance of getting some form of cancer.
The man’s sperm was used in Denmark and several other European countries for several years. It was not sent to any UK clinics, but some British women used it while having fertility treatment in Denmark, the Human Fertilisation and Embryology Authority (HFEA) said.
“The Danish Patient Safety Authority has informed us that a very small number of UK women have been treated in Danish fertility clinics with this sperm donor,” said HFEA chief executive Peter Thompson. “We understand that they have been told about the donor by the Danish clinic at which they were treated.”
The problem was first uncovered in France, when two children being treated for blood cancer were found to have identical mutations, and it emerged they had both been conceived through the same clinic. “The private sperm bank made the link between these children and said they were from the same donor,” said Dr Kasper.
Then, families all over Europe who had used the same donor received the terrible news that their children might be affected and would need genetic testing.
Sperm banks outside the UK are less regulated (Photo: Antonio Marquez lanza/Getty)In some cases, the children were not aware they had been born through sperm donation, said Dr Kasper. “The parents had two pieces of news to announce to their children, that they are born with a sperm donor and they may have a genetic disease.”
Some countries already have caps on the number of children that can be born from one sperm donor. In the UK, the limit is that one man’s sperm can be used for no more than 10 families whether here or abroad.
In Denmark the limit is 12 families within the country but there is no worldwide limit on exporting sperm. In France and Germany it is 10 and 15 births, respectively.
With clinics able to sell sperm and eggs across borders, there now needs to be international limits, said Dr Kasper.
The European Society for Human Reproduction and Embryology is currently drafting guidelines for European fertility clinics and sperm banks that would set such a cap, said Professor Jackson Kirkman-Brown, a leading expert in reproductive and maternal health at the University of Birmingham.
But it is unlikely any such guidance would be binding, as in most countries, fertility clinics are less regulated than in the UK. Belgium is supposed to have a limit of six families for one sperm donor. But in that country, the cancer-causing sperm were given out to 38 different women, producing 53 children.
Some private sperm banks stick to a voluntary limit of 75 children worldwide. But that is far more children than most men would ever have naturally.
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Whatever the new European guidelines say, similar cases may happen again in future – and one such case has already been reported.
In this, a different Danish sperm donor carried a gene for a condition called neurofibromatosis, which also causes cancer, as well as learning difficulties. That man has fathered at least 43 children.
With fertility clinics around the world under increasing scrutiny, the European society needs to hurry up its guidance. It is the least we owe to 197 children.
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