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.

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

No. The 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 48 conditions you have just 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.

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

Currently, only Tay-Sachs is covered by the NHS 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 for disorder-specific carrier testing where appropriate.

How accurate is the test?

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

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, you will have an increased risk relative to the general population, though this will be lower than people of full Jewish descent.

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

The Jnetics test identifies carriers of 47 (or 48) conditions in one go (prior to September 2021, the test covered 9 disorders). However, if you do have a family history of a particular Jewish genetic disorder, your GP can refer you to a Regional Genetics Service to see if you are eligible for disorder specific carrier screening.

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.

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.

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 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.

Is BRCA included

Jnetics screening services do 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 screening@jnetics.org.

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

You can either book an appointment further in advance or wait to see if there are any cancellations. If you are pregnant and you will be over 11 weeks pregnant by the time of the next available appointment, please email screening@jnetics.org and we will try our best to accommodate your needs.

Has the test offered at the clinic been updated recently?

Yes. As of September 2021, the test was updated to include 48 severe recessive disorders (this total includes Fragile X Syndrome, a prevalent X-linked recessive disorder, for which screening is offered as an option for female clinic participants only) Previously we covered 9 ‘Ashkenazi’ disorders on our test. The new test includes disorders relevant for both the Ashkenazi and Sephardi/Mizrahi community.

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 £350, whilst the price for testing as an individual is £250.

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

The price for testing as a couple is £350, while the price for testing as an individual is £250. We encourage, as far as 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.

Can I pay on the day?

No. Paying is a central part of the online registration process.

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.

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 full refund will be given up to 48 hours before your appointment was scheduled. If you cancel less than 48 hours in advance of your appointment, the refund will include a £25 deduction for late administration costs.

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 your appointment date then please contact us at screening@jnetics.org 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 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 are concerned about cancer in your family and would like more information about how to access BRCA screening if appropriate, please contact screening@jnetics.org.

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.

How long will it take to receive my results?

You will receive your results from the NHS Jnetics genetic counsellor via email within 8-10 weeks of the screening event. Pregnant couples can receive their results within 6-8 weeks.

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.

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 carrier for the same disorder, our NHS Jnetics genetic counsellor will provide you with all the follow-up information, support and referrals required.

Where will I get tested during University Screening Week?

Testing during university screening week is totally virtual i.e. via zoom video call. This means you can get tested from wherever you like- as long as you have your screening pack with you and 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 10th November 2022.

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. We can offer you the option to re-screen with our new test of 47 disorders for a subsidised charge. Please email screening@jnetics.org to find out more about how you can do this.

Which disorder are covered in the test?

The test cover 47 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 in the UK. A full list can be found here.

How and when do we receive results?

Results are returned via email from our dedicated NHS Jnetics genetic counsellor, from email LNWH-tr.jnetics@nhs.net, 20 weeks after the date of screening to the student email provided. If parent and GP email addresses are provided results will 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.

Where does the screening take place?

Screening takes at your school. 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.