*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-consultation and give you instructions about providing and posting your sample to the lab.

Jnetics Screening For Jewish Genetic Disorders

Jnetics offers carrier screening for a group of severe genetic disorders that are of particular relevance to people of Jewish ancestry, in partnership with Fulgent Genetics and North West Thames Regional Genetic Service at Northwick Park Hospital.

There are two Jnetics screening services:

The Barnet Clinic – Barnet Hospital, Main Outpatients, Level 1, Wellhouse Lane, Barnet, EN5 3DJ

1st Thursday Of The Month: 0830-0930 | 1030-1230 | 1310-1630
3rd Thursday Of The Month: 1130-1330 | 1410-1830

The Virtual Clinic – for those based outside of London. Those living in London are not eligible for this service, (please call Jnetics on 020 8158 5123 if there are extenuating circumstances)

 

Click on a time in the box below to make your booking, and see under the box for further information about our screening. 

 

 

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.

What does the screening process involve?

The screening process differs slightly depending on whether you are attending the Barnet Clinic or the Virtual Clinic. Remember, only those living outside of London are eligible to take part in the Virtual Clinic.

The Barnet Clinic

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 the 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

The Virtual Clinic

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 call 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

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 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 11 weeks pregnant by time of your appointment, please contact us at .(JavaScript must be enabled to view this email address) 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 the Jnetics screening services 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 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.

If you are interested in screening but are unable to afford the subsidised amount of £240, please contact us at .(JavaScript must be enabled to view this email address) as there may be an option to offer some limited financial assistance)

** 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

Click below to register for the Barnet Clinic or the Virtual Clinic

Click here to register

Venue for Barnet 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.

Frequently asked questions about Jnetics carrier screening

Please click on the titles to open and close the following information sections.

If you have additional questions, please send them to .(JavaScript must be enabled to view this email address)

 

How much does Jnetics screening cost?

The cost of testing for all 9 disorders is £240 per person. If you are interested in screening but are unable to afford the subsidised amount of £240, please contact us at .(JavaScript must be enabled to view this email address) as there may be an option to offer some limited financial assistance.

Is carrier testing for Jewish genetic disorders covered by the NHS?

Currently, only Tay-Sachs is covered by the NHS and this is only for the Ashkenazi Jewish community. The other conditions covered in the Jnetics screening test are not available on the NHS unless you have an established family history of a particular condition. In this case, your GP can refer you to a Regional Genetics Service where professionals will explore if you are eligible for disorder-specific carrier testing.

Can I turn up on the day without pre-booking?

No, this is not possible. In order to be seen by our genetic counsellor and be tested you need to have a pre-booked appointment. You can book an appointment by following this link.

Can I pay on the day?

In order to successfully book your appointment, you must complete the online registration form and pay online prior to attending the clinic. It is therefore not possible to pay on the day.

What if I miss my time slot and arrive late?

If you arrive after your pre-booked time slot, we will still try and fit in your screening but it is likely you may need to wait until the people who have arrived on time have been seen. Please do try to arrive on time to avoid waiting.

Is this test only relevant for people with Ashkenazi Jewish origin?

No. The test is relevant to anyone with Jewish origin – whether that is Ashkenazi or Sephardi. Prior to April 2020, only those with Ashkenazi ancestry were eligible to get screened, however Jnetics has updated their test to make it relevant for people of Sephardi origin too.

I have booked a slot, but can no longer attend – can I get a refund?

If you have booked but are unable to attend, please email .(JavaScript must be enabled to view this email address) as soon as possible to enable your slot to be re-assigned. A full refund will be given up to 48 hours before the screening event – after this, the refund will have £25 taken off for late administration costs.

How accurate are the tests?

Carrier testing for the Jewish genetic disorders covered in the Jnetics screening programme is very accurate, although it is important to note that no test is ever 100% accurate. This screening test detects between 94%-99% of carriers in the Jewish population with detection rates varying slightly across the different conditions.

Do both me and my partner need to get screened?

If you are not currently pregnant or not imminently wanting to conceive, it is fine for either you or your partner to get screened rather than both. If the partner who screens first is identified as a carrier, it is recommended that the other one participates in screening. This can be done either Jnetics or in some (but not all) scenarios via the NHS.

If my partner or I are not sure of our Jewish ancestry – is testing still relevant?

If you suspect that you have at least one Jewish grandparent, it is still sensible to be tested. This is because if you have some Jewish ancestry, you will have an increased risk relative to the general population, though this will be lower than people of full Jewish descent.

My partner and I are both Jewish – do we both need to get tested?

Although it is possible for one partner to be tested, if that partner is a carrier of a particular disorder then the other one should also be tested for that disorder too. Only in cases where both partners are carriers of the same disorder is there an increased risk of them having an affected child. If you choose for only one partner to be tested, the person who has the strongest Jewish origin should be the one that is screened.

If I am pregnant – can I still be screened?

Although it is advisable to have carrier screening prior to pregnancy, testing is possible if you are already pregnant. However, if you will be over 11 weeks pregnant by the screening event date then please contact us at .(JavaScript must be enabled to view this email address) to enable us to discuss with you the implications and options available for screening in later stage pregnancy.

I have recently given birth – can I still be screened?

It is not a problem if you have recently given birth or are currently breast feeding, you can still be screened.

All of my children are healthy – is testing still relevant?

Even if you already have healthy children, it is possible that future children could be affected by a Jewish genetic disorder if both partners are carriers for the same disorder. If you are considering expanding your family then testing is still relevant.

My sibling is a carrier of one of the Jewish genetic disorders, can I be tested for just that one?

The Jnetics’ screening identifies carriers of all nine conditions in one go. However, if you do have a family history of a particular Jewish genetic disorder, your GP can refer you to a Regional Genetics Service where professionals will explore if you are eligible for disorder-specific carrier testing

Can I also be screened for BRCA at the event as some of my close relatives have had cancer?

Jnetics community screening does NOT include screening for BRCA mutations. However, if you are concerned about cancer in your family and would like more information about how to access BRCA screening if appropriate, please contact .(JavaScript must be enabled to view this email address).

What does providing the saliva sample involve?

The test involves providing a small saliva sample. PLEASE DO NOT EAT, DRINK, CHEW GUM OR SMOKE FOR 30 MINUTES PRIOR TO YOUR APPOINTMENT.

How long will it take to receive my results?

You will receive your results from the Jnetics Genetic Counsellor in the post within 8-10 weeks of the screening event. You will receive these whether or not you are found to be a carrier.

Will the results of my test be kept confidential?

The results of your carrier screening test will be delivered directly to the Jnetics genetic counsellor at Northwick Hospital who will only share the results with you. The results of your test are strictly confidential and will not be shared with any additional parties unless you request otherwise.

What does it mean if I am found to be a carrier?

It will not affect your own health in any way. If you are found to be a carrier and are planning a family, it is sensible for your partner to be tested. If s/he is also a carrier there will be a 1 in 4 risk of having an affected child. If s/he is not a carrier there will not be a significant risk of having an affected child.

What support is available if I am found to be a carrier?

You will have the opportunity to discuss your results with a dedicated Jnetics genetic counsellor. The implications of being a carrier are only significant if your current or future partner is also a carrier of the same condition. In this situation it will be possible to make an appointment with a genetic counsellor to discuss the different options available to reduce the risk of having an affected child.

Will being found to be a carrier affect in my medical insurance in any way?

There should not be any ramifications of being a carrier of a recessive condition with regard to any kind of insurance.

Will my medical insurance cover the cost of the test?

Some insurance companies may cover the cost of the Jnetics carrier screening test, however you will need to check with your individual provider directly. If you would like a service receipt from Jnetics, please contact us at .(JavaScript must be enabled to view this email address) and we will be happy to provide you with one.