Interview: It’s NOT just Tay-Sachs

New national screening service

The community screening service that Jnetics launched in London in 2014 is now being widened to reach the whole of the UK
Jnetics Interview on JSCN Radio

Jnetics is the UK charity dedicated to improving the prevention and management of Jewish genetic disorders.

This includes Tay-Sachs disease, but covers 9 other degenerative genetic disorders prevalent in the Ashkenazi community.

Working in partnership with the NHS, over 1000 people of Ashkenazi origin have been tested, of which 1 in 5 were found to be a healthy carrier of at least one of the conditions covered.
However, if a couple are BOTH carriers of the same disorder, their children have a 1 in 4 chance of being affected.
Fortunately the numbers are low… Jnetics has identified three carrier couples, and they are now being helped to manage their risk and have healthy children.

These disorders disproportionately affect the Ashkenazi community, and are all utterly devastating – yet all entirely preventable.

Last year, Jnetics opened their first Northern office, based at The Fed in Manchester.
And in January 2018 the new nationwide screening service began, designed specifically for the Jewish communities outside of London, called the ‘Virtual Screening Clinic’.

It offers a convenient and smooth experience. Registration is online and participants meet with a genetic counsellor via phone-call. Anything they need for their appointment, including a saliva collection kit, is sent by post. After the phone-call, a participant simply provides their saliva sample and sends it to the lab. Results, sent by email, are received 8-10 weeks after the virtual appointment. A report written by a genetic counsellor informs participants of their carrier status and offers their contact number for further information and support if required.

The Carrier Screening Service is available via the Virtual Clinic across the whole county

For more information about the Virtual clinic, visit the Jnetics Screening Services page on the Jnetics website www.jnetics.org or email screening@jnetics.org


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