Sperm donor children may have fatal gene

Lois Rogers / Sunday Times London 23sep01

A SPERM donor carrying a genetic defect may have passed a life-threatening abnormality to 43 babies he fathered at a London clinic. The parents of one affected child are trying to find the man, who they believe has returned to his native Australia.

The couple say it is crucial that the donor is found, as the 42 other children he is known to have fathered in Britain stand a 50/50 chance of having inherited the rare, but potentially fatal, genetic disorder known as Opitz syndrome.

Named after the American doctor who discovered it, the condition is a single gene disorder that can cause malformations when the two halves of the body - the so-called "midline" - line up during gestation. There are believed to be only a few hundred affected people in the world, though a family support group in America says it knows of such children in all parts of Britain.

Sufferers characteristically have widely spaced eyes, but they may also have respiratory and digestive disorders that often cause prolonged illness and death in early childhood.

Genetic investigations of the mother and child, who do not want to be identified, have established that the mother does not carry the Opitz gene. Unless the child's condition is a one-off genetic mutation, it must therefore have come from his father.

The case has emerged as ministers prepare to publish plans for legislation that could allow children born of sperm donors to identify their genetic fathers. Currently, donor anonymity is protected.

The boy, now nine, was conceived just before the creation of the Human Fertilisation and Embryology Authority in August 1991, which restricted to 10 children the number of offspring created from one sperm donor. Donors are screened for sexually transmitted diseases as well as several genetic disorders including cystic fibrosis. However, until now, there has been no test for Opitz.

Jinan Bekir, the medical director of the London Women's Clinic, used to work at the now closed Hallam Clinic in Harley Street where the child was born, though she did not treat his mother. Her clinic recently took over the practice of the Hallam Clinic, but it is believed any records from the sperm donor involved are held at Bourn Hall, an infertility clinic in Cambridgeshire whose parent company briefly owned the Hallam in the mid-1990s.

Bekir said there had been previous contact with the parents of the Opitz child, both medical professionals themselves, but her clinic's ethics committee had decided it would be inappropriate to try to contact the donor or to cause unnecessary worry to other families with children fathered by him.

Peter Brinsden, medical director of Bourn Hall, said he was unaware of the case but would try to help them.