Please click on the titles to open and close the following information sections.
Yes, registration for both clinics involves the same link and same booking form. There is a tick box on the booking form that individuals living outside of London must select. This will indicate to Jnetics that they will be attending the Virtual Clinic.
You can either book an appointment further in advance, or wait to see if there are any cancellations. If timing is a concern eg. you are currently pregnant or planning to start or expand your family in the immediate future, an alternative screening option is available at Guy’s hospital at the cost of £330.
No. Unfortunately only those living outside of London are eligible to attend the Virtual Clinic.
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.
No. All participants must pre-register for their screening appointment. For those attending the Barnet Clinic, registration is possible up until 3pm on the day before the appointment. For those attending the Virtual Clinic, registration is possible until a week before the appointment.
No. Paying is a central part of the online registration process.
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 93%-99.5% of carriers in the Ashkenazi Jewish population with detection rates varying slightly across the different conditions. Since this screening panel tests for specific genetic changes common to the Ashkenazi population, it is less accurate in people of non-Ashkenazi origin.
If only one partner is Ashkenazi, it is reasonable for that partner to be screened. If the Ashkenazi partner is found to be a carrier of a particular disorder, then it is advisable for the other partner to also be tested to see if they are a carrier specifically for that condition.
If you are not sure of the extent to which you have Ashkenazi ancestry, but suspect that you have at least one Ashkenazi grandparent, it is still sensible to be tested. This is because if you have some Ashkenazi ancestry, you will have an increased risk relative to the general population, though this will be lower than people of full Ashkenazi descent.
If both partners are of Sephardi origin this screening test is not directly relevant as the carrier rates for Jewish genetic disorders among Jews of non-Ashkenazi origin are no higher than in the general population.
However, if one or both partners are Sephardi with Moroccan ancestry, then testing for Tay-Sachs is still relevant as there is an increased risk (about 1 in 80 Moroccan Jews are Tay-Sachs carriers). In this case, an option to test specifically for Tay-Sachs will be available on the day in parallel to the Ashkenazi screening test.
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. 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 Ashkenazi origin should be the one that is screened.
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 Jnetics screen 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 for disorder-specific carrier testing where appropriate.
Providing a saliva sample involves spitting in to a saliva collection kit. The process is very straight forwards. Participants must remember not to eat, drink (even water), smoke or chew gum 30 minutes prior the their appointment.
You will receive your results from the Jnetics Genetic Counsellor via email within 8-10 weeks of the screening event. You will receive these whether or not you are found to be a carrier.
The results of your carrier screening test will be delivered directly to the 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.
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.
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.
There should not be any ramifications of being a carrier of a recessive condition with regard to any kind of insurance.