Jnet­ics looks to dou­ble num­bers at Bar­net screen­ings

The Jewish Chronicle - - COMMUNITY NEWS - BY BARRY TOBERMAN www.jnet­ics.org

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

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