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Community screening for Jewish genetic disorders at Alyth

Date/Time
Date(s) - 19/01/2017
7:00 pm - 9:30 pm

Categories


This Jnetics community programme offers carrier screening for a group of severe genetic disorders that are of particular relevance to people of Ashkenazi Jewish ancestry. Working in partnership with Liverpool Women’s Hospital and Guy’s Hospital, the service offers responsibly delivered private screening for 9 of the most severe Jewish genetic disorders.

A screening event will take place at Alyth on Thursday 19 January 2017

What Are Jewish Genetic Disorders?

Jewish people, as with all ethnic groups, are at greater risk of inheriting certain genetic conditions relative to the general population. Many people have heard of Tay-Sachs, but research has identified other serious genetic disorders that disproportionately affect people of Ashkenazi Jewish origin.

Like Tay-Sachs, these can also potentially be prevented through effective carrier screening.

What Is Carrier Screening?

Carrier screening involves taking a saliva sample from an individual and testing it to identify if that person is a ‘carrier’ of a genetic condition.

Carriers of recessive conditions are NOT affected themselves but are at high risk of passing on a genetic disorder to their children if their partner is also a carrier of the SAME disorder.

Why Have Carrier Screening For Jewish Genetic Disorders?

While Jewish genetic disorders vary in severity, those covered in the Jnetics screening programme can all be very debilitating, almost all cause shortened lifespan and a few, like Tay-Sachs, are fatal in childhood.

1 in 5 people of Ashkenazi Jewish descent are a carrier of at least one of the main Jewish genetic disorders

Though rare, these conditions are devastating and most lack any effective treatment at this time – and typically occur even when there is no family history.

Carrier screening helps you to identify if you are at increased risk of passing on a severe genetic disorder and enables you to consider the different options available to reduce the chances of having an affected child.

What Does The Screening Process Involve?

Registration – before the screening day, register on-line to book your preferred time slot.

Information review and consent – on arrival during your pre-booked session, you will be given a screening leaflet to read and a consent form to complete. A Jnetics screening advisor will then review these materials with you, answer any questions, and ask you to sign the consent form confirming your agreement for screening to proceed.

Giving a saliva sample – at the event, you will provide a saliva sample which will be sent off to the Genetics laboratory at Liverpool Women’s Hospital for processing. PLEASE DO NOT EAT, DRINK, CHEW GUM OR SMOKE FOR 30 MINUTES PRIOR TO YOUR APPOINTMENT.

Receiving results – you can expect to receive a results letter from the Jnetics dedicated genetic counsellor based at Guy’s Hospital between 8-10 weeks after the screening day. If you are a carrier of one of the conditions, it will be possible to contact the genetic counsellor at Guy’s Hospital for further information, advice and referrals, if relevant.

Who Is Eligible For Community Screening?

Screening is available for anyone aged 16 and over and who is of Ashkenazi Jewish descent (having at least one Ashkenazi Jewish grandparent).

The test is particularly relevant for people who are currently, or at some point in the future, planning to start or expand their existing family.

It is also possible to get tested if you are already pregnant. However, if you will be over 16 weeks pregnant by the screening event date then please contact us at screening@jnetics.org so that we can discuss with you the implications and options available for screening in later stage pregnancy.

Which Disorders Are Covered?

The disorders covered in this community screening programme are listed below – for more information about each, click on the disorder names.

Disorder Carrier Frequency
(among Ashkenazi Jews)
Tay Sachs Disease 1 in 25
Cystic Fibrosis 1 in 25-29
Familial Dysautonomia 1 in 30
Canavan Disease 1 in 40-57
Glycogen Storage Disorder (type 1a) 1 in 71
Fanconi Anaemia (type C) 1 in 89
Niemann-Pick Disease (type A) 1 in 90
Bloom Syndrome 1 in 100
Mucolipidosis IV 1 in 100-125
How Much Does The Test Cost And How Can I Pay?

The cost of testing for all 9 disorders is £190 per person.

This directly covers the testing costs incurred by Liverpool Womens Hospital. Additional costs involved in delivering the service and providing counselling support are being subsidised by Jnetics in order to keep the price of the screening as low as possible.

Payment needs to be made EITHER:

By cheque made payable to Liverpool Women’s Hospital NHS Foundation Trust and sent to Jnetics at PO Box 65520, London, N3 9BU, OR
By bank transfer to Jnetics: sort code 08-92-99; account no. 65381447. Please put your name as the payment reference. Once received, Jnetics will write a cheque for the full transferred payment to Liverpool Women’s Hospital.
The laboratory will not process samples without payment so this needs to be received by Jnetics before the screening event or on the day itself at the absolute latest.

If you are interested in screening but are unable to afford the subsidised amount of £190, please contact us at screening@jnetics.org as there may be an option to offer some limited financial assistance.

How Can I Register?

As screening capacity is limited, we strongly recommend that you register in advance to guarantee a place.

Please click on this link to register and choose your preferred screening time slot.

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