Breast cancer postcode lottery treatment highlighted by charity

A survey by leading cancer information charity CancerBACUP has shown wide varieties in the services offered by Regional Genetics Centres testing women for the BRCA1 and BRCA2 breast cancer genes. The CancerBACUP survey shows:
* Up to 9 month wait for first appointment with geneticist in some Genetics Centres
* Women waiting up to 2 years to find out if they have breast cancer gene in some centres
* Only half of UK genetic laboratories testing 100% of BRCA genes
* Variety of approaches to consent and communication with women on retesting

The survey shows that in two (11%) out of the 19 Regional Genetics Centres which responded, women who suspect they may carry the BRCA genes are waiting up to 9 months for their first appointment with a geneticist. Nearly a third of responding Centres (32%) have more than a 6
month wait.

Women in five Centres (26%) are waiting between 1-2 years for their test results to come through, despite a Government White Paper issued in 2003 stating that by 2006 diagnostic genetic test results should be available within 8 weeks of the test taking place.

CancerBACUP identified 23 Regional Genetics Centres in the UK that carry out genetic testing. The Centres are serviced by 16 Molecular Genetics Laboratories which test the gene samples.

The survey also shows that only 6 out of 12 (50%) Molecular Genetics Laboratories who responded are currently testing 100% of the BRCA genes, despite NICE guidance in 2004 that the whole gene should be looked at. Advances in technology and government funding have made 100% testing now possible where previously only 60% testing was available in many Laboratories.

Centres are also required to carry out re-testing of samples to ensure women previously tested for 60% of the BRCA genes are now tested for 100% of it. Two laboratories (17%) say that it will take two years to clear the backlog.

CancerBACUP’s survey shows that there are also variations in the way Centres communicate with women about the retesting. Although women gave their consent to retesting at the time of their original BRCA test, this could have been several years ago. The survey shows that seven Centres (37%) are seeking renewed consent before they re-test, while five (26%) are not. A survey of patients in the London area carried out by UCL shows that a significant amount of women (40%) would prefer to give renewed consent before retesting takes place.

CancerBACUP is calling for women to be made aware that all Centres are offering 100% testing of the genes, and that all Centres will give them the option of having their genes retested within a reasonable timescale.

"It is vital that genetic testing Centres offer the same standard of service throughout the UK", says Dr Andrea Pithers, CancerBACUP Genetic Information Project Manager. "We would like to see all women being informed that testing 100% of their BRCA genes is now available for everyone, in order to give them the choice over whether they would like to be retested. It's also important that Centres speed up the time it takes to give women their test results. Although many of the Centres say they will meet the government targets on this by 2006, our survey shows that some have a long way to go to achieve it."

James Mackay, Consultant Genetic Oncologist, said: "This conference is a great opportunity to discuss the important issues around what the needs of women who may have a genetic disposition to breast cancer are. While the survey offering a snapshot of former patients’ opinions showed that 40% of women would like to be re-contacted before their genes are retested, only half of the women asked remembered that they had given consent for testing in the future if technology improved."

http://www.cancerbacup.org.uk/News/Press/Pressreleasesstatements/2005/32905125