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
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
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.