Jnetics on Campus
Stakeholder Information

Jnetics is the only cross communal charity in the UK dedicated to the prevention and diagnosis of Jewish genetic disorders (JGDs). These are genetic disorders that, although not exclusively Jewish, are more prevalent among individuals of Jewish ancestry compared to the general population.

Carrier screening is a type of genetic test that gives people the opportunity to find out if they are a ‘carrier’ of a recessive genetic condition. Carriers are typically NOT affected themselves but are at increased risk of passing the genetic condition on to their children, if their partner is ALSO a carrier of the same disorder, as shown in the diagram.

Screening involves taking a buccal cheek swab and testing it to see if there is a ‘mutation’ in one or multiple genes. If a mutation is found in a particular gene this means that the individual is a ‘carrier’ for the associated disorder.

Testing is available for any students at university based in the UK with at least one biological Jewish grandparent.

Participation is completely FREE to eligible students. The screening cost is fully subsidised by Jnetics through fundraising and the generosity of the community.

Please note that once you have left university there will be a cost for screening (Current Price £315).

Jnetics offers carrier screening for 47 of the most severe recessive JGDs relevant to Ashkenazi, Sephardi and Mizrahi people of Jewish descent.

The common symptoms, outlook, carrier frequencies and the associated at-risk populations can be found on our website, by clicking here.

While Jewish genetic disorders vary in severity, those covered by Jnetics can all be severely debilitating and most cause shortened lifespan. At this time, they are incurable and most lack any effective treatment. Fortunately, they can be prevented through effective carrier screening.

Though rare, the conditions covered on the Jnetics test are devastating and can typically occur even when there is no known family history.

Over 1 in 3 people of Jewish descent are carriers of at least one of the disorders covered by Jnetics.

Unless screened, carriers often go undetected until it is too late. The best time to screen for these conditions is before starting a family as it gives individuals the greatest number of reproductive options to avoid having an affected child in the future, should they be identified as a carrier.

1. Students register at jnetics.org/oncampus for one of the 350+ virtual screening appointments available during the week. A screening pack is sent in the post containing everything needed to complete the test during the appointment.
2. During USW, students attend their screening appointment via Zoom with a trained Screening Advisor. The Screening Advisor will guide the student through completing the form and how to collect the sample.
3. Following the appointment, students post their sample to Jnetics, which will then be sent on to the lab. Students should expect to receive their results within 15 weeks

Jnetics aims to screen as many Jewish students as possible, arming as many young Jewish adults as possible with essential information about their genetics.

We certainly cannot do this on our own and rely heavily on the valuable support of organisations who work closely with Jewish students on a daily basis.

You can help us in the following way:

• Share our content on social media, via email or WhatsApp
• Give out Jnetics on Campus flyers at your events
• Have someone announce Jnetics on Campus at your events
• Devote one of your educational sessions to the topic of Jewish genetic disorders and the importance of carrier screening
• Identify students who would make good Jnetics on Campus student reps

Testing of the BRCA 1 and BRCA 2 genes is not included in the Jnetics on Campus test. BRCA gene testing is available via the NHS Jewish BRCA Testing Programme.

To read more about BRCA gene testing, how to get tested and how to get support if considering testing, go to www.jewishbrca.org.