London - A British mother is among nearly 100 women who have had babies by a Danish sperm donor who has triggered an international scare over the spread of an incurable genetic disease.
The man, known only as Donor 7042, carries a defective gene known as neurofibromatosis 1 (NF1) that can pass on a severe, life-limiting condition to his offspring.
With demand for Danish sperm soaring, the donor is understood to have fathered 99 'Viking babies' - as they are widely dubbed - across the world through the clinic Nordic Cryobank.
Ten of his offspring have already been diagnosed with NF1 - a condition which can increase the risk of cancer, cause learning difficulties and reduce a sufferer's lifespan by up to 15 years. A child born from a parent with the defective gene has up to a 50 percent chance of developing the disease.
Now four families are suing the sperm bank and the case has raised questions among fertility experts about Denmark's booming, and unregulated, sperm export trade.
Laura Witjens, from the National Gamete Donation Trust (NGDT), said: 'The distribution and use of Danish and American sperm donors is not regulated or monitored, but patients are not told this.
'NF1 is a rare disease, but the terrible spread of the gene via this prolific Danish donor highlights the worrying dangers of the widespread use of a single donor.'
The British mother was one of 20 women treated at an IVF clinic in Belgium who conceived using the rogue sperm, the Belgian federal health authority revealed.
But reports from a variety of countries show the donor has fathered many more children - 99 in total, including the ones on Belgium, along with 44 across Scandinavia, 34 in America and one in Iceland.
Danish mother Lone Sogaard-Kristensen, whose daughter inherited Donor 7042's illness, claims she was contacted by as many as 17 women with his children who had the condition.
Ms Witjens said that it was possible more British women could have bought his donations with the defective gene online.
Donor 7042's sperm was also exported to a closely associated centre in America - the California Cryobank. But in 2009 it was discovered he carried the NF1 gene - despite undergoing tests and stating in a questionnaire for Nordic Cryobank that there were no genetic disorders in his family.
The shock discovery was made when a baby conceived with his sperm in Belgium was diagnosed with the condition.
Sogaard-Kristensen was 'stunned' to be informed of his medical status by the Danish health authorities. And when her daughter Andrea subsequently developed the illness, she became one of the families - three from Denmark and one from the US - who are taking legal action against Nordic Cryobank.
A class action lawsuit claims it failed to properly screen for the disorder before using his specimens.
'The case is not about money or revenge, it is about the fact we have not been able to get any information and the only way we can do this is through a court,' Ms Sogaard-Kristensen said. 'There are no rules that say you must be told how many children these donors make and the sperm banks will not tell you.'
It is understood that The Nordic Cryobank will say that the legal claims against them are unfounded.
Managing director Peter Bower has previously stated that Donor 7042 could not be 'clinically classified as having NF1, as it only occurs in some of his cells'. The company's website states that it carries out genetic testing for a range of diseases including cystic fibrosis and sickle cell anaemia. But it adds the disclaimer: 'It is impossible to rule out genetic disease with 100 per cent certainty since it is not possible to test for all inheritable diseases.'
* The case comes as leading fertility scientists from Birmingham University and the Netherlands are calling for new international rules limiting the number of children one donor can produce to 100. They say if a donor exceeds this there is a risk of siblings inter-breeding and suffering psychological damage on finding out they are related to hundreds of other children.
Dr Jackson Kirkman-Brown, the fertility expert who led the research at Birmingham University, said: 'What is clear when buying sperm from abroad is that although the number of families a donor is allowed to father in the UK is capped, it could be hundreds elsewhere.
'If you can imagine finding out that you have 500 siblings across the globe...that could have a real risk to the mental health of a child.'
RESPONSE FROM NORDIC CRYOBANK
IOL is carrying this response in the interests of fairness. Nordic Cryobank has sent us a statement which reads: I
n connection with this article, please note: Nordic Cryobank: All sperm-donors are subject to rigorous medical scrutiny through genetic testing, urine analysis and medical examination.
10th April 2015, Copenhagen, Denmark: On April 5th, 2015 UK-based newspaper The Daily Mail carried a misleading story detailing one of Nordic Cryobank's previous sperm donors.
The story's background is that offspring from the sperm donor was diagnosed with the condition NF1, app. 6 years ago. The article was published without giving Nordic Cryobank a genuine opportunity to comment, and this statement is to rectify misunderstandings that the story may invoke.
"The Daily Mail falsely suggests that we did not, and, by inference, do not, test our donor's sperm. The newspaper moreover falsely suggests that the particular donor was not subject to a thorough medical investigation. Neither suggestion is true," says Annemette Arndal-Lauritzen, CEO of Nordic Cryobank.
The donor in question was, as all Nordic Cryobank donors are, subject to a state-of-the-art thorough medical examination, including extensive blood work, urine test, genetic test and genetically reviewed 4-generation family health history. At the time of acceptance in the program, the donor was a healthy young man with no signs of genetic or other illnesses.
After several years, one of his offspring was diagnosed with NF1 and a targeted genetic investigation was performed on the donor - an investigation not possible without a specific genetic match from an offspring. The investigation involved the University Hospital of Copenhagen and a specialised laboratory in the US, leading to the discovery of a rare genetic mosaic for NF1 and a subsequent full stop for the donor.
"At Nordic Cryobank, our proceedings and activities are continuously monitored by the Danish Board of Health and at no time have we been criticised for allowing the donor to enter the programme. Additionally, several specialists have reviewed donor's historic health data, from his acceptance into the programme to his termination, and found no grounds for criticism," says Annemette Arndal-Lauritzen.
She furthermore states that the number of offspring quoted as 99 is greatly exaggerated and that the large numbers mentioned in general are extreme. "We are particularly sorry for the inconvenience that the newspaper's article may incur, especially as it may increase insecurity with the many women contemplating insemination with Danish sperm," says Annemette Arndal-Lauritzen.