Community
Genetic testing moves from school to campus for the first time
Jnetics describes 'exciting and rewarding' session - but warns that funding from the community will be needed for future screenings to take place
March 20, 2019 09:47
Jnetics describes 'exciting and rewarding' session - but warns that funding from the community will be needed for future screenings to take place
March 20, 2019 09:47Jnetics, the Jewish genetic screening organisation, conducted its first ever university screening programme on Sunday, with more than 140 students at the University of Birmingham tested for genetic conditions disproportionately affecting Ashkenazi Jews.
Katrina Sarig, Jnetics’ executive director, described the programme, which took place over six hours at the Birmingham Hillel House, as “really exciting and rewarding.
“These students will have information that could make a difference to the health of their future families.”
Jnetics launched its GENEius programme two years ago with the aim of eliminating nine specific genetic disorders, including Tay-Sachs, cystic fibrosis, familial dysautonomia and Canavan disease, from the Jewish community.
The first step was introducing screening for year twelve pupils in Jewish schools, with more than 1,000 screened in the last two years. However, as Mrs Sarig said, Jnetics has always been “very conscious that not all young Jewish adults go to Jewish schools”, and the intention was always to extend the programme to universities, “to try and reach Jewish students who have not accessed the school programme.”
Students attending on Sunday included Aaron Bright, a 3rd year Economics and Political Science student.
“I had already left school when the GENEius programme started, so this chance to get screened at university by Jnetics made it all so accessible and easy,” he said.
“I’m really grateful for that.”
In organising the university screening, Mrs Sarig said, Jnetics knew that they had a “slightly different challenge” on their hands. “The Year 12s are all in school, whereas with the students we had to engage them when they weren’t all together and motivate them to come to an event.”
They achieved this partly by speaking with “people on the ground, students and different stakeholder organisations — including UJS, JSocs, University Jewish Chaplaincy, Genesis programmes run by Aish, Chabad and the Jewish Medical Association.”
They also provided an incentive — kosher sushi. “We would like to think the incentive of being able to identify and potentially manage the risk of passing on a severe genetic disorder would be motivation in itself,” Mrs Sarig laughed.
“But we were also happy to understand what would really get the students to come and have this service.”
She said Jnetics was “very keen to roll it out to other universities”, noting that “about 75% of Jewish students go to nine universities.
“Ideally, if we do three a year over three years, we’ll be picking up a huge proportion of the Jewish students that aren’t going to Jewish schools.”
However, much depends on funding. With the organisation hoping to reach “hundreds of students” at each further session, Mrs Sarig said that an accurate cost would be “around £50,000 per university, if you’re including all the costs associated with delivering the programme.
“We can’t go forward unless we have people understanding what benefits their children are getting from the service and help us support it. It won’t, unfortunately, be able to go forward without the community’s support.”
