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Sperm donor had 24 kids and a fatal genetic mutation

1 August 2011
Appeared in BioNews 618

A man who fathered at least 24 children by sperm donation in the US failed to inform fertility clinics that he had a rare genetic defect which is often fatal, ABC news has reported.

This was revealed after Rebecca Blackwell and her son Tyler, who was conceived using donor sperm, tracked down Tyler's biological father three years ago. They discovered that donor 'John' had a rare aortic heart disorder that had nearly killed him after his aorta ruptured at the age of 43. John's father and two of his brothers had the same genetic condition. John also has Marfan's syndrome, a connective tissue disorder, but none of this information was disclosed to the three sperm banks to which he contributed.

Tyler, who is now 18, had corrective surgery last summer, but his mother has questioned why they were never told about John's medical history. 'Tyler had a time bomb ticking in his chest', she said. 'It didn't occur to anyone to tell us'.

A similar case occurred in 2009 in California when a sperm donor passed on hypertrophic cardiomyopathy to nine of his 22 known offspring, one of whom died. Such reports raise the issues of donor anonymity and the sharing of medical records.

The fertility industry in the US is one of the least regulated in the developed world. Wendy Kramer of the Donor Sibling Registry, which has matched 8,400 donor siblings with their half siblings and/or donors, said: 'There are no rules or regulations about donor identification, testing donors, monitoring numbers of children or medical records'.

However, last month Washington became the first US state to grant rights to donor-conceived individuals so that when they turn 18 they can access their donors' medical histories and full names, unless the donor specifically opts out of being identified.

At present, the US Food and Drug Administration guidelines indicate that donated sperm cannot have any 'relevant communicable disease or agent', but medical information is not shared between the donor and the child's family. Advocates argue that donor anonymity should end, and testing should be extended to include genetic conditions such as cystic fibrosis and Tay-Sachs disease.

Sean Tipton, a spokesman from the American Society for Reproductive Medicine, said: 'I don't think there's a way to make human reproduction perfect...all you can do is use the best and most practical screening available at the time of donation'. He added that 'you can't screen for everything'.

Other countries – including Sweden, Austria, New Zealand, the Netherlands, Norway, Switzerland, the UK, and some states in Australia – have already removed donor anonymity and have established systems to help people find their sperm donor. In May, a landmark case in British Columbia banned anonymous gamete donation, although this is currently being appealed by the government.

Sperm Donor's 24 Kids Never Told About Fatal Illness
ABC News |  21 July 2011
Sperm donor's 24 kids never told about his fatal, genetic illness
Daily Mail |  21 July 2011
8 April 2013 - by Dr Anne Child 
Marfan syndrome is a terrible disease. Families must have access to preimplantation genetic diagnosis to limit the genetic impact on their families in the future...
16 April 2012 - by Cait McDonagh 
A British scientist who ran a fertility clinic in London from the mid-1940s to the mid-1960s, used his own sperm and may have fathered hundreds of children, it has been claimed...
21 November 2011 - by Dr Lux Fatimathas 
Apologies have been issued by a Welsh IVF clinic following the accidental destruction of three patients' sperm samples. The samples, known as straws, were collected from patients undergoing treatments for blood disorders and cancer that may affect their fertility. An investigation is underway as to why no senior staff were informed when the samples were destroyed in March this year...
18 July 2011 - by Sandy Starr 
The UK's fertility regulator, the Human Fertilisation and Embryology Authority (HFEA), has made its first set of decisions following the outcome of its recent consultation on sperm and egg donation, known as the Donation Review...
23 May 2011 - by Sarah Pritchard 
Anonymous egg and sperm donation will no longer be permitted in British Columbia (BC), Canada, after a donor-conceived woman, Olivia Pratten, took the provincial government to court to argue that its adoption laws discriminated against individuals such as herself....
25 October 2009 - by Ben Jones 
The American Medical Association has returned the issue of sperm donor screening to the public eye after publishing an article detailing the transmission of a rare and deadly heart defect to nine offspring of a registered sperm donor. The Los Angeles man (42), who is the genetic father of twenty-four children, was given a full medical check, along with tests for infectious diseases and provided a full medical history when he originally donated in the early 1990s but his genetic ...
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