Page URL:

Danish sperm donation law tightened after donor passes on rare genetic disease

1 October 2012
Appeared in BioNews 675

The Danish Government is currently reviewing its guidelines on sperm donation policies following the discovery that a donor has passed on a rare genetic condition to at least five children.

The donor, known only as 'donor 7042', is believed to have fathered 43 children in ten countries, and had his sperm distributed to 14 clinics. Of the 43 children conceived using the donor's sperm, at least five have inherited the nerve disorder Neurofibromatosis type 1 (NF1) also known as Von Recklinghausen's disease.

NF1 is caused by a genetic mutation that shows autosomal dominant inheritance, such that children of a parent carrying this mutation have a fifty percent chance of inheriting the disorder. However in some cases of the disease, the mutation is not inherited from the parents and arises spontaneously. NF1 is a condition that is characterised by benign tumours, bone deformity, high blood pressure and learning difficulties. There is no cure but symptoms may be managed.

'In the case of these five, we know the disorder came from the donor even though the disorder is not always transmitted by a person's parents', said Mr Peter Bower, director general of the clinic Nordisk Cryobank in Copenhagen, where donor 7042 made his sperm donation.

Although the clinic was first told in June 2009 that one of the donor's children had been diagnosed with NF1, the donor's sperm was subsequently used in further inseminations. 'Our team of physicians and our geneticist looked at the case but didn't consider there to be reason enough to suspect it was the donor and therefore no reason to stop the use of his sperm', said Mr Bower to the Swedish news outlet, The Local.

The clinic's website states that all sperm is screened for cystic fibrosis and HIV, human immunodeficiency virus but does not say whether the screening also includes NF1.

Denmark will introducing new rules as a response to this case. Each donor will be allowed to have his sperm used in a maximum of 12 inseminations from 1 October. Although donor 7042 fathered 43 children, the limit at the time was 25 and it is unknown how the donor was able to exceed this.

Nordisk Cryobank currently pays 300 Kroner (£32) per successful sperm donation. Ms Sonja Pedersen, the mother of an affected child, told the BBC: 'We are dealing with a lot of children, but there is also the economical aspect. They earn a lot of money doing this. And one has a responsibility to make sure that the product, so to speak, is all right'.

7 May 2013 - by Ayesha Ahmad 
A woman has been sentenced to five years in prison after being convicted of forcing her adopted teenage daughter to artificially inseminate herself....
7 May 2013 - by Ari Haque 
A man who claims to have fathered 49 children as a private sperm donor has been arrested on suspicion of sexual assault...
23 April 2012 - by Rosemary Paxman 
Ed Houben, a 42-year-old Dutch man has fathered at least 82 children by private sperm donation, mostly by having sex with his clients, news sources report...
16 April 2012 - by Dr Rosie Morley 
The Human Fertilisation and Embryology Authority (HFEA) has launched a new strategy to increase awareness of egg and sperm donation and to improve the care of donors. It aims to address perceived obstacles to donor recruitment aired during its consultation on gamete donation last year....
14 November 2011 - by Jessica Ware 
IVF using donated egg or sperm other than from a spouse will remain banned in Austria. This was the final decision made by the Grand Chamber of the European Court of Human Rights (the Court) on 3 November in the closing of the case SH and others v Austria....
12 January 2009 - by Ben Jones 
The British Fertility Society (BFS) has announced a substantial reworking of guidelines for the donation of gametes and embryos for assisted reproduction so as to increase safety for recipients of donated reproductive material. The guidelines, which replace the BFS's 2000 guidelines for egg and embryo donations and...
4 June 2004 - by BioNews 
A new law that requires sperm donors to be identifiable has come into force in the Netherlands, resulting in a dramatic drop in the number of men coming forward to donate. Women wanting to obtain sperm from Dutch sperm banks are now apparently facing up to two years on a...
to add a Comment.

By posting a comment you agree to abide by the BioNews terms and conditions

Syndicate this story - click here to enquire about using this story.