By admin on October 30, 2012

For over a dozen years, the Donor Sibling Registry has been focused on openness, mutual consent contact and acknowledging kinship, and the updating and sharing of medical information amongst families. We have also taken a strong stance for the comprehensive medical and genetic testing of donors and the ending of donor anonymity.

By contrast, most sperm banks have been chronically resistant to any move towards acknowledging kinship — some (including Fairfax and CLI) actually withhold from donors their own donor numbers, thereby making it much more difficult for donors who do wish to establish contact, even just to share and update and share crucial medical information with families on the DSR. The sperm banks have also ignored or opposed calls for other much-needed reforms, e.g. more accurate, up-to-date record keeping; allowing donors and families to make mutual consent contact before a child is 18; updating and sharing of all medical and genetic information; initiating comprehensive medical and genetic testing of donors; accurately tracking donors and the children being born; and placing limits on the numbers of children created from any one donor.

The American Society of Reproductive Medicine (ASRM) has taken a very strong stand against regulation and has argued that there is “no scientific evidence to support a cap at ten children per donor”. The 9/2012 ASRM’s Mental Health Professional Group (MHPG) Newsletter lists sponsorship by three sperm banks, Fairfax, Xytex and California Cryobank. (Fairfax and Xytex continue to have the largest number of very large half-sibling groups on the DSR). It seems to me that for the MHPG to accept funding from parties with a commercial interest in maintaining the status quo could give rise to the appearance of a conflict of interest, and raise questions as to whether MHPG policies, recommendations or guidelines are in fact influenced by the interests of their sponsors. Can they fulfill their mission statement (“…to promote scientific understanding of the psychological, social, and emotional perspectives of infertility patients”) with this type of sponsorship?


By admin on October 02, 2012

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