The interesting thing about this story (this is not new, as it was first reported a couple of years ago) is that this donor is also a California Cryobank donor. So Denmark responds to this urgent situation by limiting the number of children a sperm donor can produce. We regularly hear stories about sperm donors passing along medical and genetic issues to children here in the US, but no regulation is ever initiated. Why does the American Society of Reproductive Medicine continue to block any type of regulation that would help prevent situations like this from happening?

http://www.actiontoday.net/en/more/2416-8/Denmark-tightens-sperm-donor-law-after-NF1-transmissions.html
Denmark tightens sperm donor law after NF1 transmissions
2012-09-26 : 12:03 pm

Denmark is tightening rules on sperm donation after one donor was found to have passed on a rare genetic condition to at least five of the 43 babies he is thought to have fathered.

Neurofibromatosis type 1 (NF1) produces tumours that affect the nervous system, and the affected sperm is thought to have been used in 10 countries.

The sperm bank has been criticised for failing to screen for the condition.

Donors will now only be allowed to donate enough for 12 inseminations.

Denmark has liberal sperm donation policies that appeal to women who want to conceive using artificial insemination.

The Copenhagen sperm bank Nordisk Cryobank said it was aware of five babies that had been born with NF1.

The clinic’s director, Peter Bower, told Agence France-Presse that confidentiality rules meant he was unable to give detail on how old the children were, or where they lived.

But he said the donor was known to have provided sperm to women prior to October 2008, in countries inside and outside Europe.

He said Nordisk Cryobank did not stop using the sperm immediately because it could not be sure the donor was responsible for passing on the condition.

The donated sperm was used by 14 different fertility clinics, Danish broadcaster DR reports.
‘Shaken and shocked’

NF1 is caused by a genetic mutation. In half of all cases it is passed from a parent to their child. In other cases, the mutation develops on its own.

It can produce a wide range of symptoms – from unusual skin pigmentation, to serious and disfiguring non-cancerous tumours which can sometimes turn cancerous.

It can also cause learning difficulties, problems with vision, and an abnormally curved spine.

There is no treatment for the condition, but the symptoms can be managed.

A mother of one of the affected children, Mia Levring, condemned the clinic’s actions, saying she was “shaken and shocked”.

Another, Sonja Pedersen, said: “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.”

The head of the Danish Health and Medicines Authority, Anne-Marie Vangsted, criticised the sperm bank, saying it had failed to withdraw the sperm when it first became aware of the problem.

It is unclear how the donor who passed on NF1 was able to father 43 children, despite Denmark’s current limit of 25.

The new limit of 12 will be introduced from 1 October.

Date : 2012-09-26

Father’s Day Denial- a Guest Blog by Tamsin
Posted on June 14, 2012

Our dad preferred we not acknowledge Father’s Day. As a Church of England minister he upheld the Anglican tradition of Mothering Sunday, which occurs on the 4th Sunday in Lent and in Britain is celebrated synonymously with the secular Mother’s Day. He viewed Father’s Day as a cynical Hallmark creation, born not from observance of the Christian calendar but from the crude growth of American-style capitalism.

It was just another of our dad’s endearingly eccentric quirks. Like the enormous bar of Cadbury’s chocolate he gave us on Easter Sunday in place of the customary hollow chocolate egg. A bar clearly yielded more chocolate for your money, and he would not be fooled by the commercial exploitation of religious holidays.

Thirty-five years later, as the mother of two small children conceived using donor sperm from a large U.S. sperm bank, I ponder the meaning of Father’s Day in a radically different way. I am fortunate to have a husband who is unencumbered by feelings of masculine inadequacy. He is their “real” father, and their mutual adoration lights up our home. He also supports open acknowledgement of the donor’s role in creating our family. We have begun to share the story with our emotionally astute three-year-old, both in honor of her genetic heritage, and in hopes that our children will never think we tried to sweep the significance of biology under the rug.

Our dad chose to demote Father’s Day to a trivial annoyance, but we knew he was our father, biologically, emotionally, and practically. He was simply defending the sanctity of Christian tradition, albeit with a healthy rejection of crass commercialism.

There is nothing endearing about the prevailing belief of many parents of donor-conceived children that they can and should ignore the role of donated sperm in their child’s conception. Genetic heritage is not insignificant, even that contributed by a donor. A refusal to openly acknowledge the truth creates, in the words of open adoption pioneers Reuben Pannor and the late, great Annette Baran, “lethal secrets”, which can manifest into profoundly destructive dynamics within donor-insemination families. Several studies on this topic have been conducted by the Donor Sibling Registry, in association with Cambridge University and other leading academic institutions. They have repeatedly demonstrated how donor-conceived children who are told early and often about their biological origins grow up far better emotionally adjusted than their peers from families where donor insemination is kept hidden for years.

For most of the 20th century, donor insemination was quietly practiced in small doctors offices, anonymously and frequently. Conventional wisdom, dictated by a patriarchal medical profession and societal attitudes that couldn’t yet stomach the idea of it, ensured that tens of thousands of children grew up simply not knowing they were the product of donated sperm. Toward the end of the century, cracks in this toxic tradition began to appear, in no small part thanks to the open adoption movement and the rise of alternative family building led by the single-mothers-by-choice and LGBT communities.

By the end of the first decade of the 21st century, the cracks had become fault lines. On one side of this heaving tectonic shift are tens of thousands of donor-insemination families and the Donor Sibling Registry, fighting to end donor anonymity and urging parents not to make the tragic choice of secrecy. On the other side, powerful medical organizations and sperm banks are perpetuating the myth that anonymity is necessary and desirable. They’ve provided a lukewarm endorsement for “telling” donor-conceived children of their donor origins, but anonymity is the enabler of “not-telling”. They are cunningly trying to appear to swim with the tide of societal change, all the while poisoning the waters with a profit-driven insistence on the continuation of donor anonymity.

Times are changing quickly. Despite unrelenting attacks from the Christian Right and bioethicists, who abhor any form of assisted reproductive technology, building a family through the use of donor sperm is becoming an increasingly acceptable choice in broader society. We’re not there yet, but more and more parents of donor-conceived children are rejecting secrecy and silence in favor of openness. In many circles there is also a growing recognition of the changing technological times, and the role of DNA matching in accelerating the end of guaranteed anonymity. With a swab of the cheek, donor-conceived children can mail their cells to any one of several DNA databanks and potentially identify relatives. It’s just different now on so many levels.

This Father’s Day, let’s acknowledge the genetic heritage of donor-conceived children as well as their “real” dad. Many children who’ve discovered they were donor conceived will never know half their biological makeup, and that sad tradition will go on for decades. But as more of us choose openness, the perceived need for anonymity will wane. Telling from the start is better, but it’s never too late to drop the secret.

http://dlistblog.com/

Sperm Donors – a National Shortage?
Beth Sullivan

In 2005 the law affording anonymity to UK Sperm donors changed. Children conceived by sperm donor cycle were granted the right to approach The Human Fertilisation and Embryo Authority (HFEA) and request the identity of genetic parents. The ruling did not apply retrospectively and it won’t be until 2023, when the first enabled child reaches 18, that this information will be released. A furor of negative speculation surrounded the revision. Experts warned that the lack of anonymity would deter potential donors, in spite of enabled children having no prospect of a financial or legal claim against them. When the HFEA published the figures for sperm donor registration, instead of confirming the predicted fall, numbers had risen, from 272 in 2005 to 303 the following year, not only disproving the widely believed portent, but also reversing a 3 year slump.

An existing model

Sweden had already undergone an amendment to its own anonymity laws. The rights of native sperm donors to remain unaccredited were revoked in 1985. Instead of discouraging donors, the identity disclosure ruling only changed the nature of the applicant. Pre-ruling, the majority of donors were young single men. Post-ruling saw an influx of older males, many of whom were in stable relationships with children of their own. Donor intentions were considered to be more altruistic in nature. The UK has followed suit and seen a similar shift in donor characteristics.

Shortage

Despite no decline in registered sperm donors since the 2005 change in law, accordant media continue to claim there is a national shortage. Bionews reported that at the Progress Educational Trust debate on the topic in 2009 ‘the removal of entitlement to donor anonymity’ was a major factor discussed by delegates considering the shortage. The HFEA has considered raising the number of families one donor can assist from 10 to 20 in an effort to combat the perceived deficiency. A belief given further credence by the long wait faced by would be parents, some of which have sought donors in Denmark, Spain and the US. This practice of ‘fertility tourism’ sparked further concern. Many seeking treatment outside the EU encounter clinics not subject to the rigorous regulatory standards demanded in the UK. In some countries there is no obligation to screen donors for genetic problems or infections like HIV.

The reality

The HFEA finally revealed that failing administrative procedures in clinics were responsible for protracted waiting lists. The failure to track the number of births enabled by a single donor has led to sperm being held back for fear of surpassing the 10-birth restriction. It has been reported that the average sperm donation made between 2006 and 2008 assisted only 1.5 families, well below the 10 family cap. Laura Witjens, chair of the National Gamete Donation Trust, said, ‘this waste amounts to 85%.’ It can be argued that some instances of low facilitation are due to donors imposing limits upon their own donations. Though this remains their prerogative, 80% of donors agree with the 10 family curb. Despite this, only six of the 975 donors registered between 2006 and 2008 enabled 10 families, a figure representing less than 1%. In defense of these allegations, clinics explained how frozen sperm stock sold to secondary clinics proved problematic. As the first vendor clinic retains responsibility for keeping track of births, the task of accounting for enabled families is left to them. Many reported difficulties in chasing secondary clinics for follow up data. Classification is another issue. Frozen embryos from donor sperm: are they to be counted as a pregnancy? These issues cause problems with monitoring the limit, which in turn may erect barriers to donor supply.

A review of procedure

With the number of donors approaching 500, it is thought to be enough to satisfy the needs of the British public. In fact Witjens made a controversial statement to this end, ‘at this point in time, we have enough donors.’ It would seem that clinics must review their procedures and the HFEA consider why donations fail to reach the potential dictated by their own policy. For them to debate an increase in the family limit to 20 seems pointless with the current infrastructure in place. Until these issues are addressed, the HFEA should concentrate on utilising the stocks already present and not pursuing shortage claims.
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Beth Sullivan is a freelance writer from England who writes for a number of technology journals covering business supply and company strategies. Applying this analysis to the donor issue she was surprised how little the assertions of the mainstream press are supported.