What is the GENEius Programme all about?
1 in 5 Ashkenazi Jews is a carrier of a recessive Jewish Genetic Disorder (JGD). These severely disabling, life shortening disorders are completely preventable through carrier screening. In many Jewish communities around the world, JGD education and screening is standard practise- saving families from the unimaginable pain and heartache of having an affected child. Yet here in the UK, for years we have been far behind. Until now we have had no such comprehensive programme and every year we see the tragic consequences.
The GENEius programme is an unprecedented education and screening initiative directed at young Jewish adults. It aims to completely eradicate severe recessive JGDs from the UK Jewish community, by making carrier screening for these disorders a routine and important part Jewish life.
The programme captures its target audience in three main groups; sixth form students, university students, and engaged couples going through the synagogue pre-marriage process. It is comprised of two key elements - education and screening .
For Y12 students education comes in the form of an interactive educational session that takes place in their school. Screening is provided via an in-school, optional carrier screening event that follows.
For engaged couples information about JGDs and how to access screening is provided via their synagogue movement during the pre-marriage process. Screening is provided via the Jnetics clinic based at Barnet Hospital. Jnetics is working closely with all the UK synagogue movements in order to establish this.
The universities aspect of GENEius is currently under development. Further information will be available here in the near future.