1What is the GENEius programme?
The GENEius Programme is an education and screening initiative set up by Jnetics and directed at young Jewish adults. It aims to shift the mindset of the UK Jewish community, so that education and screening for severe Jewish genetic disorders (JGDs) becomes a routine part of a young Jewish adult’s life. The hope is that this will eradicate cases of these devastating genetic disorders in the future.
2What’s involved in the GENEius programme?
The GENEius Programme has two key elements- education and screening. Participants are educated about Jewish genetic disorders (JGDs) and the importance of carrier screening. With this knowledge, they can make an informed choice about whether to take part in GENEius’ responsible, accessible and affordable carrier screening for 9 of the most severe recessive JGDs.
3Who is it for?
The GENEius Programme targets young Jewish adults in three main groups; sixth form students, university students and couples going through the synagogue pre-marriage process. Education and screening for these three groups differs. See our About page for more details.
Additionally, the GENEius screening is relevant only to those with Ashkenazi Jewish ancestry. This is because the screening only looks for genetic faults that occur with increased prevalence in people of this ethnicity. Those who take part in the screening must have at least one Ashkenazi Jewish grandparent. They must also be 16 years old or above.
4What are Jewish genetic disorders?
These are genetic disorders that are more prevalent amongst those of Jewish ancestry compared to the general population. This does not mean that only Jewish people are affected, but it does mean that people who are Jewish, or are of Jewish descent, have an increased risk of having one of these conditions.
5How Common Are Jewish genetic disorders?
The severe recessive Jewish genetic disorders are rare, but being a carrier of one of these is not. It is estimated that those with Ashkenazi Jewish ancestry have a 1 in 5 chance of carrying at least one of the severe recessive Jewish genetic disorders covered in the GENEius screening.
6Why get screened?
The GENEius Screening Programme helps you to identify if you are a carrier of a severe Jewish genetic disorder and therefore if you are at increased risk of passing it on to your children. Only those who are found to be carriers have this risk. When carriers are planning a family, it is sensible for their partner to be tested too. This is because if both partners are carriers of the same genetic disorder, they have a 1 in 4 chance of having an affected child. If a couple knows they are both carriers, they then have the information needed to take the relevant actions to avoid having an affected child.
7Which JGDs are covered in the GENEius screening?
There are 9 severe recessive Jewish genetic disorders covered in the GENEius screening. These (listed below) were chosen with guidance of our Scientific and Medical Advisors and international experience and with consideration of severity, frequency and testability.
• 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
8What does the screening process involve for Year 12 students?
For Y12 students, the screening process has 3 key stages;
Participants register online via the GENEius microsite for screening event relevant to them, pre-book a time slot and complete a registration form.
Participants arrive at the time they pre-booked and has a short consultation with a screening advisor who reviews their online form and offers them the opportunity to ask any outstanding questions. The student then provides the saliva sample in a private area and is subsequently free to leave. The whole process takes approximately 10 minutes.
Up to 14 weeks after the screening event, participants receive their results via email from the Jnetics dedicated genetic counsellor. Those who receive positive results are additionally provided with the opportunity to speak over the phone with a genetic counsellor.
9Where can I find out more about BRCA as we have a history of cancer in my family?
Information about BRCA-associated cancers can be found on the Jnetics website – click here.
to access this resource. It also explains about BRCA screening which is not included in the GENEius programme but can be accessed, where relevant, via the NHS and other routes. If you have any further BRCA-related questions, please contact us on firstname.lastname@example.org
10If i am not a Year 12 or university student, how can i access screening?
Jnetics offers carrier screening for 9 of the most severe recessive JGDs via a designated clinic at Barnet Hospital. Remote participation is available for those living outside of London. For more information about the clinic and to book an appointment, see here.