Researchers have revealed today that over half of couples looking to have their embryos screened to avoid their children inheriting genetic diseases like breast cancer are being stopped from doing so.
Local health authorities are often refusing to finance the treatment for patients keen to not pass on defective genes to their offspring, according to evidence collated from one of the country’s leading gene-screening
clinics.
Scientists are expecting a higher demand for the technique, known as preimplantation genetic diagnosis (PGD), following the launch of a pilot scheme to screen adults for defective genes. It was revealed last week
that members of the London community of Ashkenazi Jews were being offered screening for the BRCA gene, which increases the chance of breast, ovarian and prostate cancers.
The first British baby to be screened for such a gene was born last week, and was viewed as an important milestone in medical advances to battle genetic diseases.
PGD is expensive, costing between £5,000 and £20,000 and is only available to a select number of couples each year who want to avoid passing on known defective genes to their unborn children.
Over 60 conditions can be picked up using the technique, including cystic fibrosis, Huntington’s disease and various forms of cancer - all of which develop following inheritance of a specific defective gene.
However, as with so many expensive treatments, the NHS have to refuse many couples as NICE do not consider it to be cost effective. Joe Delhanty, Professor of Human Genetics at the University College London
PGD centre said,
“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.”
While Professor Delhanty would not identify specific trusts where funding was a problem, he did comment that couples living in the North of England had a higher chance of getting funding for PGD, while people living in London and the South East faced paying thousands for private treatment.
Each year funding is granted for PGD for only few hundred couples. However, to qualify, couples must already know that their is a family history of illnesses resulting from defective genes. A clinical geneticist establishes the risk before IVF treatment is used to produce and fertilise embryos in the womb once the presence of the faulty gene is known to be absent.
The Department of Health said last night, “PGD is available on the NHS but is considered on a case by case basis.”
