Breast cancer gene tests backlog

Women who suspect they might carry a gene putting them at a higher risk of breast cancer are waiting up to two years for the results of genetic testing, campaigners have said.

The BRCA1 and BRCA2 genes are linked to women being more likely to develop breast cancer, with testing available to those thought to face an increased risk.

But a survey by charity CancerBACUP found that women were being made to wait months or years before getting the vital tests.

Some women who find out they are more likely to get cancer because of family history and the fact that they carry the high-risk genes may take extreme measures such as having both breasts removed to avoid the disease.

CancerBACUP found that in two (11%) of the 19 regional genetics centres which responded to their survey, women who suspect they may carry the BRCA genes are waiting up to nine months for their first appointment. Almost a third (32%) had more than a six-month wait.

But in five centres (26%), women were waiting between one and two years for their test results to come through.

This is despite the Government saying in 2003 that by 2006 diagnostic genetic test results should be available within eight weeks of the test taking place.

CancerBACUP said it had identified 23 regional genetics centres in the UK that carry out genetic testing. These centres are serviced by 16 molecular genetics laboratories which test the gene samples.

The research found that only six out of 12 (50%) molecular genetics labs which responded were currently testing 100% of the BRCA genes linked to breast cancer. In 2004 the National Institute for Health and Clinical Excellence (NICE) said that all the BRCA genes should be tested.

CancerBACUP said that advances in technology and Government funding had made 100% testing now possible, while previously only 60% testing was available in many labs. It added that centres are also required to carry out re-testing of samples to make sure that women who were previously tested for 60% of the BRCA genes were now tested for 100% of it. But two of the labs said that it would take two years to clear this backlog.