As the only organization dedicated to improving the prevention and management of Jewish genetic disorders (JGDs) in the UK, both recessive and dominant, we aim to eradicate a significant number of life-threatening recessive genetic disorders from the UK Jewish Community. We also work to improve our Community’s ability to prevent and manage better hereditary cancers associated with mutations to the BRCA gene.
You may have heard of Tay-Sachs disease (TSD). But TSD is far from the only genetic disorder that disproportionately affects the Jewish community. They include at least nine recessive conditions that are severely debilitating and life-shortening. One in five Ashkenazi Jews is a healthy carrier of at least one of these nine disorders.
When two carriers of the same recessive condition have children together, each child has a one in four chance of being affected. The result is that, every year, children are born into our Community, usually into families with no known history of the condition, who require constant care and die young as a result of a severe recessive JGD.
Our GENEius screening programme launched just three years ago identifies otherwise healthy carriers of currently nine severe recessive JGDs. With that knowledge they are able to have their own unaffected children. Delivered in partnership with the NHS to the highest standards, GENEius offers education and screening for life-threatening recessive JGDs in all mainstream Jewish secondary schools, to Jewish students in universities and to young Jewish couples approaching marriage. We are currently increasing the number of conditions we screen for, to include conditions more prevalent in the Sephardi community.
So, whilst the risk of having a child with a severe recessive JGD is of great concern, and its occurrence absolutely devastating, today it is totally avoidable; we have the ability to eliminate births with these conditions, save children’s lives and avoid the heavy burden of care and untold pain and heartache.
The GENEius programme is endorsed by the Board of Deputies, The Jewish Leadership Council, The Chief Rabbi, the Beth Din and every single major synagogue movement in the UK.
Jnetics is also developing its services in relation to dominant disorders, in particular inherited cancers. We sponsor health education programmes each year for Year 12 Jewish girls, equipping them to manage their health and their risk of cancer in the light of the high incidence of cancer-causing BRCA mutations in the Ashkenazi community.
For further information please go to https://www.jnetics.org