Sperm donation and inherited disorders…including update

It seems that a sperm donor recruited by Nordisk Cryobank in Denmark has passed on the condition Neurofibromatosis Type 1 to at least nine (some reports say five) of the 43 children his donations have been responsible for.  His sperm has been used in 14 different fertility clinics throughout and outside of Europe.  Reports suggest that at least two of the children affected were conceived following warnings to the cryobank that some children conceived with this donor’s sperm had the condition.  Peter Bower, the CEO of Nordisk, said that his team did not act immediately because they initially thought that the donor was not responsible for the disease.  Neurofibromatosis Type 1 is a genetic condition caused by a gene mutation that can be inherited from a parent (progenitor in the case of sperm donation) or can arise spontaneously.

The Danish authorities, however, have acted swiftly to lower the number of children that can be conceived from a single donor from 25 to 12 and have issued instructions to the sperm banks which seem to have proliferated in Denmark, that sperm should be withdrawn from use as soon as a question mark is raised about the fitness of a donor.

Is this something that UK parents or those contemplating sperm donation as a method of family creation, should worry about?

Neurofibromatosis Type 1 can be very serious indeed.  No-one who has any of the symptoms, and it would appear that anyone with the condition would have some sort of sign that they were affected, should be donating sperm.  However, it would appear that it is not one of the conditions that can be tested for, so the sperm bank cannot be seen to be negligent in this respect.  If the donor had even the mildest of recognised symptoms – coffee coloured spots on the skin – then again the sperm bank could not necessarily be expected to notice these.  The question does arise as to whether the donor donated knowing that he had the condition and if he did whether action could be taken against him.  This would certainly be possible under UK law but none of the reports I have read indicate whether or not this is possible in Denmark.

Interestingly, Peter Bower is also Director of the European Sperm Bank, a cryobank that recruits UK compliant donors and is used extensively by clinics in this country.  I wondered if the two banks were in fact one and the same and a quick Google seems to suggest that they are.  If so, then it is likely that some of those women who received sperm from the affected donor will be UK residents.  Mr. Bower, who attends many conferences and fertility shows promoting the services of his cryobank(s), will not be a happy man at the moment.

Some comments I have seen seem to suggest that inheriting a disorder of this sort from a donor is similar to having a child with a partner who has some kind of unrecognised condition, and with some disorders I can see that this could be so.  But Neurofibromatosis Type 1 has clear signs and symptoms that in a country like Denmark are unlikely to have gone undiagnosed.  My current thinking is that donor negligence, or even worse, deliberate passing on of the disorder by the donor, are more likely, but I’d be happy to be proved wrong.  I’d just also like to say that I have absolutely no reason to believe that the vast majority of UK and indeed probably most donors, donate for anything other than the very best of reasons.  I, and very, very many others, have very good reason to be enormously grateful to them.

We can also be grateful for the 10 family rule in the UK, thus limiting the number of children, but what if donors come from abroad, from countries like Denmark – or even worse the USA – where UK limits are not adhered to, even if they are in other ways UK compliant?

It seems that sperm banks need to actually look at their donors, not just test their genes.

http://www.bbc.co.uk/news/world-europe-19711565

26.9.12   I am delighted to report that it appears I am wrong about the donor in the above Danish case.  It would seem that his Neurofibromatosis Type 1 arose spontaneously, does not seem to present with even the mildest of the normally highly recognisable symptoms and is not present is all of his sperm cells.  The full report from the Copenhagen Post is here http://cphpost.dk/news/national/sperm-bank-broadcaster’s-allegations-are-wrong

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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