FAQs

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Carrier screening (or carrier testing) involves a simple 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 disorders are NOT typically affected themselves but are at increased risk of having a child affected by the disorder if their partner is also a carrier of the SAME condition.

Carrier screening helps couples to identify if they are at risk of passing on a severe genetic disorder. This gives them the knowledge to make informed decisions about the various options available to them when planning a family.

It is an important step in family planning and allows you to take control and make informed choices that can protect the health of your future children.

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

The test offered at The Jnetics Clinic covers 47 of the most severe recessive Jewish genetic disorders with prevalence in those with either Ashkenazi or Sephardi/Mizrahi ancestry.

Optional screening for Fragile X Syndrome, a prevalent X-linked recessive disorder is also available for female participants of the Jnetics Clinic.

The disorders covered are: 

  • Severe, debilitating, incurable and life limiting – many are fatal in childhood
  • Inherited in an autosomal recessive manner, except for Fragile X Syndrome
  • More prevalent amongst those with Jewish ancestry compared to the general population, except for 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.

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.

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.

Yes, if you have a close blood relative found to be a carrier of one of the conditions Jnetics test for. You can ask your GP to refer you for specific carrier testing following an appointment with your local NHS genetic service.
Please note you would only be tested for this condition and none of the other conditions on the Jnetics screening panel. We still advise individuals to test for other conditions as your carrier status can differ from family members.

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.

If you have received your results, but can no longer find them then you can request a copy as follows:
– If you were tested between the start of 2017 and 20th February 2024 please email lnwh-tr.nwtrgsclinicalgenetics@nhs.net.
– If you were tested between 2014 and the end of 2016 please email to gst-tr.geneticscorrespondence@nhs.net.

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.

You will have the opportunity to discuss your results with a dedicated 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 you have received 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.

  • With recessive disorders, BOTH partners in a couple need to be carriers of the SAME condition for there to be a risk of having affected children. Where this is the case, with each pregnancy, there is a 25% chance that the child will be affected (develop the condition).
  • It is extremely advisable for individuals who are identified as carriers to ensure that the partner is also screened before planning a family.
  • If you find out that you are a carrier, it is also suitable to inform their siblings of this. There is a 50% chance that your sibling will also be a carrier of the same recessive disorder themselves.

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.

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.

Being a carrier of a recessive condition should not affect your medical insurance. You may however want to check with your insurance provider. Please find details of the Code on Genetic Testing and Insurance here.

Screening through the clinic 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.

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 £425, whilst the price for testing as an individual is £315.

Testing is possible if you are already pregnant.

The best time to take the Jnetics test  is before you are pregnant as results can take up to 10 weeks and there are more options for carrier couples preconception.

Although it is advisable to have carrier screening prior to pregnancy, testing is possible if you are already pregnant. For pregnant couples we are able to speed up the process and you should receive your results within 5-7 weeks. 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.

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

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.

The price for testing as a couple is £425, while the price for testing as an individual is £315.

These amounts directly cover the lab testing costs and clinical administration. 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 financial assistance.

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.

You will receive a confirmation email of your booking.

This email contains important information about what is involved. As this service is virtual, there are some specific actions that we rely on you to take.  

You are required to complete this online e-learning module BEFORE taking the test. You will be sent the link to the e-learning in the confirmation email.

After you have completed the module, you may proceed to take the test at home.

If at any point during the module, anything is unclear, please email jnetics@crgh.co.uk and a genetic counsellor will respond to your query. We recommend that you undertake the test within a week of receiving your kit and post the kit back to the office within 48 hours of providing the sample.

Your screening pack will be dispatched within 5 working days to the address you provided on the registration form.

The pack includes the following: please check carefully that you have received all four components before proceeding. If anything is missing e-mail screening@jnetics.org.

  • A Buccal cheek swab test
  • A bespoke Test Request From (TRF) and test tube label– if any of the information on the form or label is incorrect, please contact the Jnetics office as this form will be sent to the lab with your sample.  
  • Specimen Bag, with absorbent pad – this is where you place the completed kit and form for return.  
  • Stamped addressed envelope to the Jnetics office, (if sending from overseas this may not be included).

Test results will be uploaded to a secure CRGH portal 8-10 weeks after your sample is received by Jnetics. You will receive an email from CRGH with details of how to set up your portal after your test has been received at the Jnetics office.

Our processes work as efficiently and quickly as possible. Our current timeline for turnaround of results is up to 10 weeks. We will endeavour to report as fast as possible in urgent or pregnant cases.

Our genetic counselling services are provided by our partner at The Centre for Reproductive and Genetic Health (CRGH).

The results of your carrier screening test will be delivered directly to the Jnetics genetic counsellor at The Centre for Reproductive and Genetic Health (CRGH).

Your results will be uploaded to a secure CRGH portal which only you and your partner will have access to.

The results of your test are strictly confidential and will not be shared with the Jnetics office team.

If you provide us with your GP details at the point of booking, CRGH will share your results them.

If you have booked but have decided that you no longer want to take the test then we can offer a partial refund. Please email screening@jnetics.org as soon as possible.

A refund will be given with a deduction of £15 for couples and £10 for individuals for credit card processing fees.

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.

This year, the booking form for university screening week closes on Wednesday 6th November 2024.

Testing during university screening week is totally online via a 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.

Each appointment lasts no more than 30 minutes.

Test results are shared with you from CRGH via a secure portal 15 weeks after the screening date, unless advised otherwise.

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, £315 for an individual screening and £425 for a couples screening. Please click here for more info.

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.

Any UK-based student (undergraduate or postgraduate) with at least one biological Jewish grandparent is welcome to take part.

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 JSoc assemblies and offer an online screening event once a year to those students who have attended the education and are 16 years old or above.

Screenings usually take place at your school. Exact details are provided at the end of the educational presentation given by Jnetics prior to the screening event, or by the school on the screening day.

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

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

  • On-line registration – to book a time slot and complete a short background information form.
  • Screening – registered students arrive at their pre-booked time slot and are directed to a trained screening advisor who will review key information with you, answer any questions then provide an explanation and kit for you to give a small saliva sample.
  • Analysis – saliva samples are sent to an accredited lab for analysis.
  • CRGH share test results with the student via a secure portal 15 weeks after the screening date, unless advised otherwise.

Test results are shared with you from CRGH via a secure portal 15 weeks after the screening date, unless advised otherwise.

Any student identified as a carrier is invited to arrange a phone call with our genetic counsellor to discuss the implications if they want. Details of how to do so will be included in an email to you.

If you provided us with your GP details, a copy of your results will be sent to them to add to your medical records. If you are unable to provide your GP’s full details, we cannot guarantee that they will receive a copy of the results.

Results are also sent to parents if their email address was provided upon registration. We would advise including a parent, as the results may have implications for other members of your wider family.

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