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Jnetics, PO Box 65520, London N3 9BU

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Tel: 020 8123 5022


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 mutationA mutation refers to a structural change in a gene. It can be an alteration to a gene’s size, arrangement, or molecular sequence 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.

Accessing carrier testing for Tay-Sachs disease

For individuals of Jewish origin, there are a number of ways in which Tay-Sachs carrier testing can be accessed on the NHS. The main service options are outlined below and further details for each can be found by clicking on the relevant links:

  • Guy’s Hospital, London – runs a walk-in clinic for Tay-Sachs disease screening on Monday mornings (except Bank holidays) between 9.30am and 11am. The service is free and no referral or appointment is needed.
  • Barnet General Hospital, London – offer carrier testing on a Thursday mornings between 9am and 10am. The service is by appointment only and can be booked online by clicking the link above.
  • In addition, wherever you live in the UK, you can ask your GP to refer you to your Regional Genetics Service to arrange screening for Tay Sachs.
  • Alternatively, your GP may be willing to take your blood and send it to the Guy’s Hospital laboratory for screening. For this, they would need to contact the Guy’s Genetics department to check sample and postage requirements.
  • Jnetics community screening events are held periodically throughout the year, usually in north London, to identify carriers of Tay-Sachs disease as well as 8 other severe Jewish genetic disorders. Although this service is run in partnership with the NHS, since NHS funding is not available for the other 8 conditions, this subsidised service costs £190. 

If you are not Jewish but have a history of Tay-Sachs disease in your family, your GP can refer you to a Regional Genetics Service for carrier testing covered by the NHS.

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 carrier testing for other JGDs.