Danish donor inherits genetic disease to at least 9 children

Danish donor inherits genetic disease to at least 9 children

Danish donor inherits genetic disease to at least 9 children

The terrifying case of a donor of the Danish sperm bank Nordic Cryobank, who passed on the genetic disease neurofibromatosis type 1 (short: NF1), also called Recklinghausen disease or peripheral neurofibromatosis, to at least 9 of the 45 children he gave birth to, reveals another reason that the identity of sperm donors must be traceable and that the number of children conceived by a donor must be limited.1

Nordic Cryobank is the world’s largest seed bank and sells cash donations from Denmark to over 70 other countries. NF1 is a rare disease that is hereditary in half of the cases. The disease can cause tumors, changes in the bone and blood vessels. The donor was not tested for this disease before donating.

Although only 25 children can be fathered by a sperm donor under Danish law, 43 children in different countries were donated. In Germany, a number of 10 children is recommended by the German Medical Association, but in fact this is not controllable. Of the 43 children, at least nine were diagnosed with NF1.2 The donations were also sold to Sweden, Norway, Belgium and several other countries3 where the sperm bank may not feel bound by these legal rules.

Although the clinic was notified in June 2009 that a Belgian child begotten by donor 7042 was tested positive for NF1, the clinic continued to sell its sperm. For this reason, the parents of the children begotten by donor 7042 are considering taking legal action against Nordisk Cryobank.4 The clinic claims that they had no reason to believe that the donor’s NF1 had been inherited.5 NF1 is produced in about the same way Half of the cases due to spontaneous genetic mutations. However, it was already clear in this first case that the mother had not inherited the disease. In this respect, the question arises as to whether, with a 50% chance of a hereditary disease, the clinic should not have used donations from donor 7042 until it has finally been clarified.

Furthermore, the clinic neither contacted the parents, whose children were also fathered by donor 7042, nor did they notify the clinics to which his donations were previously sold. The whole issue became publicized only last year when it became clear that more infants were infected and the genetic defect had been inherited from the donor.

As a result of this scandal, a donor’s sperm may only be used in Denmark for a maximum of 12 sperm donations since 1 October 2012.6 If a genetic disease is suspected, the donations may not be used with immediate effect.7

But it is questionable if that is enough. In April of this year, the Danish Health Authority and its appeal to the anonymity of semen donors again came under fire after failing to contact the children of a sperm donor with a deadly genetic disease.8 The donor was given the donation in 1997 a few years after donating hereditary and cancer causing Lynch syndrome diagnosed. He turned to the government to contact the recipients of his donations because early treatment could prevent serious health problems for the children. However, the health authority decided not to contact them because the search was difficult because of donor anonymity. The donor then turned to the media.

In Germany, too, contact with a suspected hereditary disease to the affected recipients would be difficult, at least for treatments before 2003, because many reproductive physicians still rely on the fact that until 2007, the statutory retention period for semen donation data only 10 years. Many claim to have destroyed the data after this deadline. With that, you would not have been able to track a donation after this time – and no case of genetically-related diseases. Of course, because you can never test for all illnesses and some even come to light later, I can not imagine that this risk escaped doctors in Germany. Presumably they just ignored it – like the wishes and needs of the begotten children.

The case clearly shows that, aside from the fact that the right to knowledge of ancestry is a fundamental and human right, there is also a medical need for donations to be traced back more than 30 years, as in the Transplantation Act provides. At the same time, it is to be hoped that donors, even years after their donation, will be aware that if their hereditary diseases develop, the children they father should be informed.

Whether German sperm banks and doctors behave similarly irresponsible as the Nordisk Cryobank, is not known. However, due to interference in the human procreation process, there is such a high risk that some state control would be appropriate. This could then finally oblige the German seed banks and doctors to introduce a system that guarantees control that no more than 10 children are actually conceived by a donor.

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Christina Cherry
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