A row has erupted over a potential government decision to discontinue screening for life-shortening diseases that have a high degree of frequency in the Ashkenazi Jewish community.
Representatives of Jewish Genetic Disorders UK, which monitors genetic conditions relevant to people of Jewish ancestry, said they felt “deeply concerned” following a meeting with members of a government advisory body last week, the UK National Screening Committee.
The meeting involved a discussion of testing for genetic disorders prominent in the Jewish community. The committee was said to be considering available evidence for screening all UK Ashkenazi Jews for Tay Sachs, Canavan disease and Familial Dysautonomia (FD).
Though the decision will not be disclosed until April 17, JGD policy adviser Sara Conway said they were “deeply concerned that the National Screening Committee may decide to discontinue recommending carrier screening for Tay Sachs disease.
“This will make it extremely difficult for our at-risk community to access this vital testing,” she added.
Canavan disease is a life-shortening progressive disease of the central nervous system. The carrier frequency in the Ashkenazi Jewish population is approximately 1 in 50.
Familial dysautonomia, for which there is no cure, is a progressive disorder which affects the autonomic and sensory nervous systems. Approximately one in 30 Ashkenazi Jews carry the recessive FD gene and more than 99 per cent of FD cases occur in Ashkenazi Jews.
Tay Sachs disease (TSD) is a severe neurological degenerative disease. Affected infants rarely survive past the age of four. The carrier frequency of TSD in Ashkenazi Jews is approximately 1 in 27.
At the moment, the National Health Service recommends Tay Sach screening for at risk populations. Costs for testing for Tay Sachs vary, but is currently free in London on the NHS, according to Ms Conway.
“We welcome the NSC’s support for the principle of carrier testing in areas of high Jewish population, but in practice this NHS -funded service looks likely to fall between different agencies,” she said. ”
“JGD UK will continue working with the Board of Deputies, Jewish Care and other key stakeholders to ensure that this very important issue of testing for Jewish genetic disorders is effectively addressed by NHS commissioning bodies.”
Jewish Care currently run public screening sessions for Tay Sachs. Guy’s Hospital also operates a walk-in clinic on Monday mornings.