Jnetics looks to double numbers at Barnet screenings
IN ITS first year at Barnet Hospital, the screening service to detect carriers of severe Jewish genetic disorders has tested 201 people.
But at Jnetics, which is administering the twice-monthly clinic in partnership with the London North West University Healthcare NHS Trust, executive director Katrina Sarig believes it is just scratching the surface.
Since the establishment of the charity’s GENEius programme, year 12 pupils are now tested at their Jewish schools.
However, Mrs Sarig points out that “a whole generation has not been screened” — with potentially heartbreaking consequences.
One in five of those of Ashkenazi origin is a carrier of at least one severe recessive Jewish genetic disorder. When carriers of the same recessive condition have a child, there is a 25 per cent chance of the child inheriting the disorder.
The Jnetics’ screenings cover nine genetic disorders, including Tay-Sachs, cystic fibrosis and familial dysautonomia.
GENEius education and screenings are delivered at eight Jewish schools — JFS, Hasmonean boys’ and girls’, JCoSS, Yavneh, Kantor King Solomon, Immanuel College and Man- chester King David. Close to 1,000 teens have been tested through the programme.
Screening is free for the pupils and even the £190 charged for screening and counselling through the Barnet service, which has replaced communal screenings in the London area, is around £60 less than the actual cost.
Mrs Sarig said the charity was additionally looking to target secular schools with significant Jewish student populations, among them City of London, Haberdashers’ Aske’s, Highgate, North London Collegiate and South Hampstead.
She also reported well-supported screening sessions with RSY-Netzer leaders — “a number of them don’t go to Jewish schools” — and Ljoy (Leeds Jewish Orthodox Youth).
Jnetics is aiming to extend its reach into universities, with the hope of a pilot programme in Birmingham during the current academic
year. “We chose Birmingham because it has a substantial Jewish student population and an engaged Jewish medical society,” Mrs Sarig explained. “It ran a successful Tay-Sachs screening five years ago.”
But the Barnet Hospital facility is crucial to reaching Ashkenazim about to start, or expand, a family who have not previously been screened.
The capacity exists to double the number screened through the Barnet service and Mrs Sarig reported that as many as 40,000 Jewish adults of reproductive age have not been screened.
Jnetics is supported by the main synagogue movements and is also promoted through word of mouth and “a strong Facebook campaign”. The charity is further spreading awareness through GP surgeries within major Jewish communities.
Mrs Sarig added that the United Synagogue was in the process of putting its marriage registration form online, with a section on genetic testing included.
“We want to establish it as standard that by the time people marry or live together, they get tested.”
The charity has a dedicated genetic counsellor at Barnet, Dr Juliette Harris, previously a Jnetics volunteer, who is also involved in the school sessions.
“It’s an incredible service. Nothing like this exists for any other community,” Mrs Sarig said.
Given that the test is saliva-based, those living in the regions can be screened through its “virtual clinic”, receiving their counselling by phone. This option accounts for about 10 per cent of those screened through Barnet.
The charity still requires considerable funding to meet its targets for schools, universities and pre-marrieds over the next three years. Nearly 30 per cent of the £2 million required has been pledged, leaving Jnetics to raise £1.4 million.
We want it as standard that people get tested before marriage ’ Katrina Sarig