Concerns have been raised about the future of NHS screening provision for diseases that disproportionately affect Ashkenazi Jews.
The UK National Screening Committee (NSC) has recognised for the first time that screening should be available for Canavan disease and Familial Dysautonomia, alongside the more widely known Tay-Sachs disease.
But it also recommended continuing not to provide screening nationally.
It explained that that the disorders were “concentrated in Ashkenazi Jewish groups in a few areas in the country”.
The committee also said it would “request that testing is available to individuals meeting the relevant clinical criteria”, but failed to specify what the criteria should be.
Britain needs to wake up. Tay-Sachs can affect non-Jews
Sara Conway, a policy adviser for the charity Jewish Genetic Disorders, said she was “deeply concerned”.
“The NSC’s commitment to ensuring that an NHS testing service is available is welcome. However, their decision [not to implement it nationally] means that this may be very difficult to achieve.”
Professor Howard Cuckle, a world-renowned authority on screening, called for national provision. “People need to campaign to have screening for diseases like Tay-Sachs expanded. Britain needs to wake up. Tay-Sachs can also affect non-Jews.”
But Professor David Katz, who represented the Board of Deputies at a meeting with the NSC, said the recommendation was “positive”.
He added: “The recognition of FD and Canavan disease has given us the opportunity to go to places where there is a high population of Jews and ask for screening.”
Up to 750 Jews are believed to be screened each year. One in 27 Ashkenazi Jews carry Tay-Sachs.