Sperm donor carrying cancer-causing gene fathered almost 200 children across Europe
People with this syndrome have up to 90% increased risk of developing cancer before they turn 60, including breast cancer; brain tumours; osteosarcoma; soft tissue sarcomas and childhood cancers
A small number of British women have received sperm from a donor with a cancer-causing gene while seeking fertility treatment abroad, the fertility regulator has confirmed.
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It comes after it was reported that a sperm donor with a genetic mutation which increases the risk of cancer by up to 90% has fathered at least 197 children across Europe.
This includes a “very small” number of women who received sperm from the donor while getting fertility care in Denmark, the Human Fertilisation and Embryology Authority (HFEA) said.
It is understood that the women have all been informed.
The man was paid to donate sperm as a student and that his sperm was used for around 17 years, it has been reported.
The man, who has not been named, passed donor screening tests, but it was later found that 20% of his sperm carry a genetic mutation of the TP53 gene.
Any children born by this affected sperm will carry this mutation.
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The TP53 gene protects from cancer by controlling the growth of cells.
People with a change in the TP53 gene have Li-Fraumeni syndrome, and those with it have up to 90% increased risk of developing cancer before they turn 60.
This includes breast cancer; brain tumours; osteosarcoma; soft tissue sarcomas and childhood cancers.
Li-Fraumeni is a “rare syndrome”, according to an article from the National Institutes of Health in the US, adding that there are likely over 1,000 multi-generational families with the syndrome around the world.
Affected people have regular monitoring to look for tumours.
The HFEA confirmed that the sperm was not distributed to licensed UK clinics.
Peter Thompson, chief executive of the HFEA, said: “We can confirm that 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.
“We understand that they have been told about the donor by the Danish clinic at which they were treated.
“As the UK regulator, we only collect or hold information about treatment which takes place in the UK.
“As the treatment took place at Danish clinics, further inquiries should be directed to the competent authority in Denmark.”
In the UK, a donor’s sperm can only be used to create children in up to 10 families. But in different countries, the limits are different.
The European Sperm Bank in Denmark said that the “donor himself and his family members are not ill” and such a mutation is “not detected preventatively by genetic screening”.
It said in a statement: “We are deeply affected by the case and the impact that the rare TP53 mutation has on a number of families, children and the donor. They have our deepest sympathy.
“ESB tests and performs an individual medical assessment of all donors in full compliance with recognised and scientific practice and legislation.”
Clare Turnbull, professor of cancer genetics at The Institute of Cancer Research, London, said: “This represents a highly unfortunate coincidence of two exceptionally unusual events: that the donor’s sperm carry mutations for an extremely rare genetic condition affecting fewer than 1 in 10,000 people and that his sperm has been used in the conception of such an extraordinarily large number of children.“
Li Fraumeni syndrome is a devastating diagnosis to impart to a family.
There is a very high risk of cancer throughout the lifetime.
“Unlike most cancer genetic susceptibility syndromes we encounter in clinic such as Lynch syndrome or that caused by the BRCA-genes for which the cancers are adult-onset, inherited mutations (pathogenic variants) in TP53 are associated with a sizeable risk of childhood-onset cancers.”
Allan Pacey, professor of andrology at the University of Manchester, said: “This is a very tragic situation, and my heart goes out to everyone affected, including the donor who donated in good faith and was unaware that he had developed this mutation in his germline (the cells that make sperm).
"Unfortunately, this mutation would not have been detected by the screening tests that he underwent when he applied to be a donor.
“Moreover, we only screen for common genetic conditions either by an analysis of his family medical history or through specific blood tests.
“It is worth noting that for every 100 men who apply to be a sperm donor, only two or three will be eventually accepted. So, there is a danger that the more screening we do, the fewer donors we will have.
“What this case does highlight is the need to consider how often donor sperm can be used in treatment and how many children can be born from a single donor.
“Although countries have their own national limits, there are no international laws or regulations. So, when a donor’s sperm is sold and distributed in multiple countries there is no way to regulate this at the moment.”