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Tay-Sachs Carrier Screening

Carrier screening in the UK

Genetic carrier screening is a process of systematically offering a carrier test to a whole population (or sub-population) of healthy people, for a gene that is known to be common in that group.

In the UK, screening for Tay-Sachs disease in the Ashkenazi Jewish population is NHS-funded. People of Ashkenazi Jewish descent have a 1 in 25 chance of being a healthy carrier of Tay-Sachs disease. If you have one or more grandparents of Ashkenazi Jewish descent, there are two different ways to have Tay-Sachs carrier screening

NHS

If you have Ashkenazi Jewish ancestry, or a family history of Tay-Sachs disease and/or you have Tay-Sachs carriers in your family, you can ask your GP to refer you to your local NHS Genetics service for a Genetics appointment for Tay Sachs carrier testing alone – this test is free. If you live within the Kennedy Galton Centre catchment area (North West London, Hertfordshire or Bedfordshire) your GP should use this referral form

JNETICS

Carrier screening for 9 severe genetic disorders that are increased in the Ashkenazi Jewish population (including Tay-Sachs) is now available at a bi-monthly clinic in Barnet Hospital, London, run by a dedicated NHS Genetic Counsellor. A Jnetics virtual clinic is also available for people living outside of London . The service, which is part-subsidised by the charity Jnetics, costs £190. People can self-refer and book a screening session here

There is also the option of having private carrier testing for Tay-Sachs disease. Details of these private options can be found in the section other providers for carrier testing.