*Coronavirus Update* In light of recent events surrounding COVID-19, with advice from our NHS partners, all clinic appointments will now take place via our ‘virtual service’. Please book your appointment in the regular way and we will post a virtual screening pack (including sample kit) to you in advance of your appointment. The genetic counsellor will call you at the appointment time for a phone or video consultation and give you instructions about providing your sample and and posting it to the lab.
About The Jnetics Clinic
Jnetics offers carrier screening for a group of 9 severe genetic disorders that are of particular relevance to people of Jewish ancestry via The Jnetics Clinic.
The clinic runs twice a month:
- 1st Thursday Of The Month: 0830-0930 | 1030-1230 | 1310-1630
- 3rd Thursday Of The Month: 1130-1330 | 1410-1830
The Clinic address is – Barnet Hospital, Main Outpatients, Level 1, Wellhouse Lane, Barnet, EN5 3DJ
Those living outside of London are eligible to take part in the clinic virtually. Those living in London are not eligible for this service (please call Jnetics on 020 8158 5123 if there are extenuating circumstances)
TO BOOK FOR THE CLINIC CLICK HERE
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 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 by Jnetics’ screening 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 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.
Which disorders are covered?
The disorders covered in Jnetics screening are listed below – for more information about each, click on the disorder names.
|Disorder||Population at risk and Carrier Frequency|
|Tay Sachs Disease||Ashkenazi Jewish: 1 in 25, Moroccan Jewish: 1 in 110, Iraqi Jewish: 1 in 140|
|Cystic Fibrosis||Ashkenazi Jewish: 1 in 25-29, Sephardi Jewish: approx 1 in 30|
|Familial Dysautonomia||Ashkenazi Jewish: 1 in 30|
|Canavan Disease||Ashkenazi Jewish:1 in 40-57|
|Glycogen Storage Disorder (type 1a)||Ashkenazi Jewish:1 in 71|
|Fanconi Anaemia (type C)||Ashkenazi Jewish:1 in 89|
|Niemann-Pick Disease (type A)||Ashkenazi Jewish:1 in 90|
|Bloom Syndrome||Ashkenazi Jewish:1 in 100|
|Mucolipidosis IV||Ashkenazi Jewish:1 in 100-125|
Who is eligible for the Jnetics clinic carrier screening?
Screening is available for anyone aged 16 and over and who is of Jewish descent (having at least one Jewish grandparent). The test is particularly important for people who are currently, or at some point in the future, planning to start or expand their existing family.
The test covers 9 repressively inherited disorders, all of which are relevant to individuals with Ashkenazi origin, and two of which are relevant to individuals with Sephardi origin. Therefore:
- The test is more clinically useful for individuals of Ashkenazi origin, but is still relevant those of Sephardi origin. (Please note: we hope to alter our test in early 2021 to include an increased number of Sephardi disorders)
- For couples who are not pregnant, the partner who has full Ashkenazi ancestry may register for screening first.
Any individual of Jewish ancestry with a known mutation or family history involving one of these 9 genes is welcome to register, providing details of the family history and/or test report.
It is also possible to get tested if you are already pregnant. However, if you will be over 11 weeks pregnant by time of your appointment, please contact us at firstname.lastname@example.org so that we can discuss with you the implications and options available for screening in later stage pregnancy.
What does the screening process involve?
1) Online Registration – this includes picking an appointment time and paying the screening fee. Participants must register no later than 3pm on the day prior to the selected appointment.
2) Screening Appointment – participants meet with a Jnetics-dedicated NHS genetic counsellor (GC). The GC answers any outstanding questions and guides the participant through the consent process. The participant then provides a saliva sample. The GC sends the saliva sample to the lab after the appointment.
3) Receiving Results – results are received by email from the GC 8-10 weeks after the appointment, or 2-3 weeks if the participant (or their partner) is pregnant. If found to be a carrier of one of the conditions, it is possible for the participant to contact the GC for further information, advice and referrals, if relevant
1) Online Registration – this includes picking an appointment time and paying the screening fee. Participants must register no later than one week prior to the selected appointment date.
2) Receiving the Screening Pack – participants receive a screening pack in the post with everything they need for the appointment. This includes forms and a saliva collection kit.
3) Phone or video Appointment – the genetic counsellor (GC) phones the participant at the chosen time. The GC answers any outstanding questions and guides the participant through the consent process. The participant then provides a saliva sample.
4) Posting the Completed Saliva Kit – the participant posts the completed saliva kit to Jnetics and Jnetics sends it on to the lab.
5) Receiving Results – results are received by email from the GC 8-10 weeks after the appointment, or 2-3 weeks if the participant (or their partner) is pregnant. If found to be a carrier of one of the conditions, it is possible for the participant to contact the GC for further information, advice and referrals, if relevant
How much does the test cost and how can I pay?
The subsidised cost of testing for all 9 disorders is £240 per person**
This directly covers the lab testing costs and clinical admin. Additional costs involved in delivering the service and providing counselling support are being subsidised by Jnetics in order to keep the real £300 price of the screening as low as possible.
Payment needs to be made online when completing the online registration form.
** Please note that the screening price increased in April 2020 due to an increase in service partner charges. Jnetics have nonetheless continued to offer a subsidy to all participants to ensure that the service is as afforadable as possible.
How can I register?
1st Thursday of the month:
0830-0930 | 1030-1230 | 1310-1630
3rd Thursday of the month:
1130-1330 | 1410-1830
Venue for The Clinic: Barnet Hospital, Main Outpatients, Level 1, Wellhouse Lane, Barnet, EN5 3DJ
Jnetics would like to thank the siblings of Alan Naftalin who kindly donated funds in his memory and to donors from the Jnetics November 2013 dinner for their support with the set-up of this service.