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More than half of couples seeking embryo screening to protect their offspring from inherited genetic diseases such as breast cancer are being prevented from doing so, researchers say.
Evidence from one of the country's leading gene-screening clinics suggests that local health authorities frequently refuse to fund treatment for patients who wish to avoid passing defective genes to their children.
Scientists predict an increase in demand for the technique, known as preimplantation genetic diagnosis (PGD), after the start of a pilot programme screening an entire adult community for faulty genes. The Times revealed last week that the London community of Ashkenazi Jews is being offered screening for BRCA genes that raise risks of breast, ovarian and prostate cancers.
Britain's first baby screened to ensure that it was free of a genetic risk of breast cancer carried by a parent was born last week, and hailed as an important advance in the fight against genetic disease. The girl was born after embryos created through IVF treatment were screened to exclude the faulty BRCA1 gene.
PGD, which costs between £5,000 and £20,000, depending on the number of IVF cycles required, is available to dozens of selected couples each year who wish to have children but do not want to run the risk of passing on potentially fatal disorders to their offspring.
It is licensed for more than 60 different conditions, including cystic fibrosis, Huntington's disease and some forms of cancer, which are triggered when a child inherits a key genetic mutation from one of its parents.
Joy Delhanty, Professor of Human Genetics at the University College London PGD centre, said that many couples were being refused NHS funding because the technique had not been considered by the National Institute for Health and Clinical Excellence (NICE), the value-for-money watchdog.
“Funding for the procedure is a postcode lottery. More than 100 couples a year are referred to us from all over the country but more than 50 per cent have problems with funding in the absence of guidelines from NICE.
“If local PCTs [primary care trusts] do not see this as a priority then they do not provide funding, it is as simple as that, but they do not consider the potential money they save by ensuring a child will be free of a disease.”
Professor Delhanty declined to name individual trusts but said that couples living in the North of England seemed to have a greater chance of PGD applications being funded by their local PCT, while those living in London and the South East may be forced to pay thousands of pounds for private treatment.
Only a few hundred couples a year are eligible for PGD. To benefit from the technique, families must first know that they have a defective gene, usually discovered through a recurring family history of illness. Once the risk is confirmed by a clinical geneticist, embryos generated and fertilised through IVF treatment can then be screened and implanted in the womb if they are free of the faulty gene.
The Department of Health said last night: “PGD is available on the NHS but is considered on a case by case basis.”
A two-minute safety checklist for surgeons, inspired by precautions used by airline crews, will be adopted in all hospitals in England and Wales after a study found that it could cut the risk of post-surgical deaths by nearly half.
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