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Women face long waits for cancer genetic test results

23 June 2006
Appeared in BioNews 364

Some women with a family history of breast cancer could be undergoing unnecessary preventative surgery, according to a UK charity. Breakthrough Breast Cancer say that some women, faced with a long wait to find out if they have a genetic mutation that puts them at high risk of the disease, are choosing instead to have both breasts removed. Others who can afford to do so are opting for private testing, which costs up to £1,800 and takes three weeks. The new report, entitled 'Testing times: Waiting for genetic test results', calls upon the government to take steps to ensure that waiting times are reduced.

The report points out that in its Genetics White Paper, published in June 2003, the Government stated that by 2006 patients should expect to receive genetic test results in 2-8 weeks, depending on the type of test taken. However, Breakthrough says that some women at risk of hereditary breast cancer are facing waits of two years or longer for test results. Oonagh Wilson, a 39-year-old mother of two, went for genetic testing in 2002, after losing her mother and grandmother to breast cancer. In 2003, she decided to undergo preventative surgery to have her breasts and womb removed, because she could wait no longer for the test results. Three years later, she has still does not know whether or not she has inherited a genetic mutation that can trigger the disease.

Most cases of breast cancer are not inherited, but around 5-10 per cent are due to a gene mutation - often, but not always, in one of two 'BRCA' genes. Women who have a mutation in either the BRCA1 or BRCA2 gene have a greatly increased lifetime risk of developing breast and ovarian cancer. Identifying such women is not always straightforward, however, since both BRCA1 and BRCA2 are relatively large genes, and any one of hundreds of different mutations in either can cause cancer susceptibility. Finding a new mutation in a family not previously investigated is therefore a labour-intensive process that can sometimes take months.

In 2004, the National Institute for Health and Clinical Excellence (NICE) recommended that all women at very high risk of hereditary breast cancer should be offered genetic testing that encompasses 100 per cent of both BRCA genes. Genetic testing for breast cancer is offered by 23 regional genetics centres across the UK, but the actual tests are carried out by scientists working in just 16 molecular genetics laboratories. In December 2005, another UK charity, CancerBACUP, said that centres are also required to re-test DNA samples from women previously tested for 60 per cent of the BRCA genes. At the time, two of the laboratories said it would take them two years to clear this backlog.

Breakthrough Breast Cancer has now called upon the Government to establish a dedicated task force to meet its original White Paper commitment. Chief executive Jeremy Hughes said it was unacceptable that women were being forced to put their lives on hold while they waited for test results. 'The decision to take such a test is extremely personal, complex and difficult enough. That some then feel compelled to make crucial healthcare decisions out of fear of developing breast cancer while waiting for their test results is appalling', he said. A spokesperson for the Department of Health said that an extra £18 million funding had been allocated to NHS genetics laboratories to speed up the process, adding 'they are making excellent progress towards this important goal'.

SOURCES & REFERENCES
Cancer test delays force women to have surgery
The Independent |  20 June 2006
Test hold-ups force women to undergo mastectomies
The Times |  20 June 2006
Women left waiting in limbo for genetic test results
Breakthrough Breast Cancer |  20 June 2006
Worried women having breasts removed rather than wait for delayed cancer tests
The Daily Telegraph |  20 June 2006
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