1What is the GENEius programme?
‘GENEius’ is an education and screening programme developed for young Jewish adults. The programme, set by Jnetics, educates about Jewish genetic disorders (JGDs) and the importance of screening; and provides access to responsible and affordable screening for 9 severe, recessive JGDs.
GENEius aims to shift the mindset of the UK Jewish community, so that education and screening for severe JGDs becomes standard practice – as it is in Jewish communities internationally – preventing new cases of these devastating disorders in the future.
2What are Jewish genetic disorders (JGDs)?
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 ancestry. Like Tay-Sachs, these can also potentially be prevented through carrier screening.
3What is carrier screening?
Carrier screening is a test that identifies if a 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 disorder to their children if their partner is also a carrier of the SAME disorder.
4Who is the GENEius programme for?
The programme focuses on young Jewish adults primarily; sixth form students, university students and couples going through the synagogue marriage process. GENEius varies across these groups but always includes education and facilitating access to screening.
To be eligible to participate in GENEius screening, participants must be:
• 16 years old or over
• Of Ashkenazi Jewish (AJ) ancestry - meaning having one or more AJ grandparents
5Is GENEius screening relevant to someone with absolutely no Ashkenazi heritage?
NO (unless you have MOROCCAN JEWISH ANCESTRY). GENEius screening tests for genetic faults that are common in the Ashkenazi population. These faults are generally no more common in people of non-Ashkenazi/Sephardi heritage than in the general population.
There are other genetic faults that lead to a range of different conditions that are more prevalent in people of non-Ashkenazi/Sephardi heritage – for more info about this, visit: www.jnetics.org.
If you have Moroccan Jewish ancestry, the screening is being expanded to become relevant for you – PLEASE REGISTER, noting your Moroccan origins and you will be offered a screening option.
Though not yet available, Jnetics is working to expand the existing test to also be relevant for people of non-AJ heritage.
6Why is JGD screening so important?
While JGDs vary in severity, those covered in the GENEius screening can all be very debilitating, almost all cause shortened lifespan and a few are tragically fatal in childhood.
1 in 5 people of Ashkenazi Jewish descent are a carrier of at least one severe JGD
Though rare, these conditions are devastating and most lack any effective treatment, and typically occur even when there is no known family history of the disorder.
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.
7Which JGDs are covered in the GENEius screening?
The following 9 severe recessive JGDs are included in the GENEius screening – chosen with guidance from our Scientific and Medical Advisors and international consultation.
More information about each condition can be found on the Jnetics website – click here.
• Tay Sachs Disease
• Cystic Fibrosis
• Familial Dysautonomia
• Canavan Disease
• Fanconi Anaemia type C
• Glycogen Storage Disease type 1a
• Niemann-Pick Disease type A
• Bloom Syndrome
• Mucolipidosis IV
PLEASE NOTE: BRCA screening is NOT included
in the GENEius screening test. – click here.
. For more Information about BRCA-associated cancers.
8No-one in my family has been affected by these disorders, do I still need to be screened?
YES. Over 95% of the couples with children affected by a disorder have no family history of the condition because the gene is silently passed on through generations by healthy carriers.
9What does GENEius screening involve?
• On-line registration – students need to book a time slot and complete a short 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 you have, and then provide an explanation and kit for you to give a SMALL SALIVA SAMPLE. This whole process usually takes around 10-15 minutes.
• Analysis - saliva samples are sent to an NHS lab for analysis.
• Results - results are processed by a dedicated NHS Genetic Counsellor (GC) who sends your results report to you - and a copy to your GP - by email up to 14 weeks after your screening. The GC’s phone number is included for contact if you have any questions.
10If I’m found to be a carrier of one of the disorders, will I develop the condition?
NO. Carriers of these recessive disorders DO NOT develop the condition/s themselves BUT if you and (future) partner are BOTH carriers of the SAME condition then you are AT RISK of passing on the condition to your children.
11What are the implications if I am found to be a carrier of one of the disorders?
• 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 (that may not be for numerous years - if you misplace your results during this time, you can always access a copy from your GP/the NHS). .
• If you find out that you are a carrier, it is also suitable to inform your siblings. There is a 50% chance that your sibling will also be a carrier of the same recessive disorder..
12I’m not planning children anytime soon so why would I get screened now?
The GENEius programme provides a quick, accessible and (currently) fully-subsidised screening service for students. If you prefer to be screened later, Jnetics runs a twice-monthly clinic at Barnet Hospital where screening, though part subsided, costs £190 per person.
13Will GENEius screening be offered at our university next year too?
NO. In order to reach as many targeted universities as possible, Jnetics plans to run GENEius screenings only every three years at each University.
14Where can someone get screened if they haven’t been able take part in a GENEius school or university screening?
Jnetics has a screening clinic based at Barnet Hospital that covers the same 9 severe recessive JGDs. Though part subsidised, participants at the clinic pay the lab processing cost of £190 to attend. Click here.
for more information and booking.
15How much does GENEius screening cost?
The actual cost is £250 per person – but, through funds raised by Jnetics, GENEius screening is currently available fully subsidised for students in Year 12 at Jewish schools and at University.
Jnetics can only continue to offer FREE screening to students as long as it has the needed funds. If able, any contribution you/your family can make to pay for screening will help enable the charity to provide screening to future students. Contributions can be made here
16How can I register for a GENEius screening?
17Will 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.
18Will 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.
19I know I’m not a Tay-Sachs carrier, do I still need to be tested for the other 8 disorders?
YES. Carrier status for one disorder has no impact on their carrier status for the other disorders.
20I want to be screened with Dor Yeshorim, can I do GENEius screening too?
Dor Yeshorim screening is appropriate for people who plans on finding a partner via the ‘shidduch system’. PLEASE NOTE: Dor Yeshorim will not screen someone who has been informed of their results from a different screening programme, such as the GENEius screening.
All eligible students can have GENEius screening, however, if you know that you want to be part of the ‘shidduch system’, then Dor Yeshorim may be more appropriate screening option for you.
21If I am planning a family with a same sex partner is screening relevant?