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Fertility regulators are allowing doctors to screen out embryos that could lead full lives despite having a genetic condition
FERTILITY regulators have triggered a new row over designer babies by allowing doctors to destroy embryos affected by more than 100 genetic conditions, including many illnesses that are not life-threatening.
The genetic “defects” that can now be routinely screened out include conditions carried by a number of leading figures, such as Pete Sampras, the tennis champion, and Sergei Rachmaninoff, the Russian concert pianist and composer.
In some cases it will mean the elimination of an embryo that has been identified as carrying genetic material inherited from a stricken grandparent, but which may not necessarily develop the same illness.
The Human Fertilisation and Embryology Authority (HFEA), has published a list of 116 inherited conditions that fertility clinics can screen out without requiring special permission.
Although many of the conditions can cause gross deformity, protracted pain and premature death, the list also includes illnesses, including cancer and blindness, which can strike late in life after a victim has enjoyed decades of good health.
A number of the conditions are not life-threatening or can be readily treated because of advances in medicine.
The disorders include Marfan syndrome, a congenital weakness of connective tissue that can lead to abnormal growth. Among the people thought to have suffered from the illness are Rachmaninoff, who was noted for his large hands, Charles de Gaulle, the French leader, and Abraham Lincoln, the American president.
Another condition that the HFEA allows to be screened out is the blood disorder thalassemia. Sampras, who won 14 Grand Slam singles titles during his career, has a version of the trait that can cause mild anaemia.
Sion Simon, the minister for creative industries, suffers from choroideremia, an inherited form of progressive blindness that is also on the HFEA list.
Simon, 41, rarely speaks about the condition, but writing in The Spectator eight years ago, he said: “Being approximately half-blind now, I know perfectly well that the diurnal exigencies of deteriorating vision are no fun. They are tedious. And yet going blind carries a certain prestige that other losses of faculty do not. There are many much worse things.”
The HFEA said it takes into account the age of onset and the variability of physical and intellectual impairment when deciding which genetic conditions can be screened.
The unpleasantness of medical treatment available for a given condition is also considered when deciding whether an affected individual will have a worthwhile life.
However, David King, director of Human Genetics Alert, a pressure group, said he was concerned about the use of selection for non-fatal conditions. “It contributes to a social climate in which even minor deviations from ‘normality’ are seen as unacceptable,” he said.
The established procedure for identifying inherited genetic abnormality is to remove one or two cells from an eight-cell embryo three days after fertilisation. The cells are then put through pre-implantation genetic diagnosis (PGD), a search for one or more defective characteristics. Abnormal embryos are discarded, while healthy ones are kept for implantation into the mother’s womb.
The HFEA is now considering adding a further 24 inherited disorders to its list of genetic conditions. Decisions on eight of them are expected this week. They include porphyria, a potentially painful condition caused by overproduction of red blood cell pigment that was linked to the “madness” of George III.
Karen Harris, of the British Porphyria Association, said: “I have porphyria, so does one of my three children and so does his child.” Although Harris said she would not have used PGD to select her own children, she would not condemn its use by other families. “If you have lived with someone unable to function and on constant morphine because of the pain, you would take a different view.”
Joyce Harper, co-founder of the PGD centre at University College London, said the selection procedure is expensive and seldom available on the NHS.
However, she has agreed to use the technique for a couple who want to ensure their child is not affected by a family gene causing deafness. She admitted: “It’s controversial and it’s going to get more controversial.”