FAQs

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

If you have additional questions, please submit them via the Contact Us form.

What is carrier screening and why have it?

Carrier screening involves taking a buccal (cheek) swab 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 typically 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.

Carrier screening helps you to identify if you and your partner 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.

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 typically 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.

Carrier screening helps you to identify if you and your partner 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.

Is BRCA included in this screening test?

Jnetics screening services do NOT include screening for BRCA mutations. However, if you would like more information about how to access BRCA screening please click the link here.

Which disorders are covered?

The test offered at The Jnetics Clinic covers 47 recessive disorders with increased prevalence in either those with Ashkenazi or Sephardi/Mizrahi ancestry. Optional screening for Fragile X Syndrome, a prevalent X-linked recessive disorder is also available for females taking part. The genetic counsellor will provide more information during your appointment to help you to decide whether to opt for Fragile X screening. 

The disorders covered are: 

  • Severe, debilitating, incurable and life limiting – many are fatal in childhood
  • Inherited in an autosomal recessive manner, with the exception of Fragile X Syndrome
  • More prevalent amongst those with Jewish ancestry compared to the general population, with the exception of Spinal Muscular Atrophy
  • Preventable via carrier screening 

View the full list of the disorders covered, including common symptoms, outlook, carrier frequencies and the associated at-risk populations.

What does the test involve?

The test involves a simple buccal (cheek) swab. During the appointment, the buccal swab is used to scratch the inside of the cheek 10 times up and down. Participants must remember not to eat, drink (even water), smoke or chew gum 30 minutes prior to their appointment.

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

Currently, only Tay-Sachs is covered by the NHS for the Jewish community for individuals without family history. The other conditions covered in the Jnetics screening test are only available on the NHS if you have an established family history of a particular condition. In this case, your GP can refer you to a Regional Genetics Service for disorder-specific carrier testing where appropriate.

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

Yes, your GP can refer you for specific carrier testing, however we still advise individuals to test for other conditions as your carrier status can differ from other family members.

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, it is still advisable to test.

How accurate is the test?

This test detects the vast majority of all genetic changes in the genes we cover. However, this test, as with all genetic tests, cannot detect all possible changes. The screening test detects over 95% of carriers in the Jewish population with detection rates varying slightly across the different conditions.

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

You will have the opportunity to discuss your results with a dedicated NHS Jnetics genetic counsellor. The implications of being a carrier are more significant if your current or future partner is also a carrier of the same condition. Once receiving your results, if found to be a carrier you will receive information of how to book an appointment with our Jnetics counsellor to discuss the different options available for you and your family.

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

No. Our current test is suitable if you have Ashkenazi, Sephardi, Mizrahi or mixed ancestry. Our test was updated in September 2021 making it suitable for all sectors of the community, not just those with Ashkenazi Jewish origin.

Do you envisage expanding the test beyond the current conditions you have included? If so, when?

With the continual advancements in genomic medicine and Jewish genetic disorder research, we cannot rule this out. However, the timing and nature of a future expansion cannot be predicted.

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

Being a carrier of a recessive condition should not affect your medical insurance. You may however want to check with your insurance provider.

 

Who is eligible for screening at the Jnetics Clinic?

Screening is available for anyone aged 16 and over and who is of Jewish descent, having at least one Ashkenazi or Sephardi/Mizrahi grandparent. 

The clinic is designed for couples to screen together, however we will accept those wishing to screen individually. 

All the clinic appointments in the next few weeks are taken, what should I do?

All available appointments are listed on our website, and appointments do get booked up quite quickly. If you would like to be added to the cancellations list please email screening@jnetics.org after you have made your booking and you will be added to the list, however please note we very rarely have cancellations.

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. Please contact us as soon as you learn about your pregnancy, to enable us to discuss with you the implications and options available for screening in later stage pregnancy.

Do both me and my partner need to get tested?

We strongly recommend couples to take part in the clinic together, however we will accept those wanting to take part individually. Testing a couple simultaneously avoids the anxiety and time-loss associated with waiting twice, should one partner be identified as a carrier first.

Having both sets of results at once, allows the couple to have all the information needed for the best decision-making and a personalised risk assessment. The price for testing as a couple is £385, whilst the price for testing as an individual is £275.

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 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.

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

Jnetics screening services do NOT include screening for BRCA mutations. However, if you would like more information about how to access BRCA screening please click the link here 

How much does it cost to take part in The Jnetics Clinic?

The price for testing as a couple is £385, while the price for testing as an individual is £275.

These amounts directly cover 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 price as low as possible.

Anyone testing through The Jnetics Clinic outside of the UK will be charged an additional £10, please click here for the international booking link. 

We encourage, where possible, participation as a couple.
If you are interested in screening but are unable to afford the subsidised screening costs, please contact us at screening@jnetics.org as there may be an option to offer some limited financial assistance.

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 screening@jnetics.org and we will be happy to provide you with one.

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 screening@jnetics.org as soon as possible to enable your slot to be re-assigned. A refund will be given up to 48 hours before your appointment was scheduled, with a deduction of £14 for couples and £7 for individuals. If you cancel less than 48 hours in advance of your appointment, the refund will include a £25 deduction for late administration costs.

What if I am running late for my appointment

If you are running late, we ask that you inform us by emailing both screening@jnetics.org and LNWH-tr.jnetics@nhs.net. We will endeavour to fit in your screening, but you may need to wait until other participants have finished their appointment, or schedule for another time.

How long will it take to receive my results?

You will receive your results from the NHS Jnetics genetic counsellor via email within 10-12 weeks of your appointment. Pregnant couples/individuals will be advised of the timescale during their appointment.

What does it mean if me and my partner are both identified as carriers for the same disorder?

Where both partners are carriers of the same disorder-causing mutation for a recessive condition, there will be a 1 in 4 chance of having an affected child. If you and your partner are both identified as a carrier for the same disorder, our NHS Jnetics genetic counsellor will provide you with all the follow-up information, support and referrals required.

Will the results of my test be kept confidential?

The results of your carrier screening test will be delivered directly to the NHS Jnetics genetic counsellor at Northwick Park 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.

Where will I get tested during University Screening Week?

Testing during university screening week is totally virtual via zoom video call. This means you can get tested from wherever you like providing you have your screening pack with you and a strong internet connection.

Until when can I sign up for University Screening Week?

This year, the booking form for university screening week closes on Thursday 16th November 2023.

How long is the virtual testing appointment?

Each appointment lasts no more than 30 mins.

How long does it take for results to come back?

Results are returned via email 20 weeks after the date of screening.

When will the next University Screening Week be?

University Screening week takes place annually at the end of November. The exact date for the next event will be found here closer to the time.

I got tested at school or university by Jnetics for 9 disorders, can I be retested?

Since you have already received free testing from Jnetics, we cannot offer you free testing again. However, we can offer you the option to re-screen with our extended panel via the clinic, we offer two subsidised rates, £275 for an individual screening and £385 for a couples screening. Please click here for more info.

Which disorders are covered in the test?

The test covers severe recessive Jewish genetic disorders. A full list can be found here. Please note that this test does NOT cover the BRCA gene.

Who can be tested as part of this programme?

Anyone UK-based Jewish student (undergrad or postgrad) with one or more Jewish grandparent is welcome to take part.

In which schools is the programme delivered?

The programme is delivered in all eight mainstream Jewish secondary schools across the UK. A full list of those schools can be found here.

Please note that we now educate in several mainstream (not Jewish) school assemblies, and offer an online screening evening once a year to these schools.

Where does the screening take place?

Screenings usually take place at your school unless advised otherwise. Exact details are provided at the end of the educational presentation given by Jnetics prior to the screening event.

Will parents be informed about when education and screening take place?

Yes. Parents receive several emails from Jnetics via the school about when and where the education and screening sessions are taking place.

Are there educational sessions for parents?

Yes. Details will be provided via the school about these.

How and when will I receive results?

Results are returned 20 weeks after the date of screening via email from our dedicated NHS Jnetics genetic counsellor, results are sent from LNWH-tr.jnetics@nhs.net, it is advisable to save this email in your contacts to avoid your results going to Junk Mail.  Participants will receive their results to the email address that was provided when they signed up for their screening, if a GP email addresses was provided results will also be sent to them too.

Any student identified as a carrier is invited to arrange a phone call with our genetic counsellor too. Details of how to do so will be included on the results email.

Do my parents get the results?

Results are also sent to parents if email addresses were provided upon registration.