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Genetic testing charity plans screening rise

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The JC special issue looking at the genetic disorders prevalent among Jews has resulted in an upsurge of inquiries to Jnetics, which organises testing for life-threatening genetic conditions.

"After the coverage, over 1,000 people have engaged with us through social media about our GENEius initiative for educating young people and traffic to our website has doubled," said Katrina Sarig, executive director of Jnetics.

"This is just the start and we have a long way to go. It has given people the much-needed information to educate and empower themselves - and to get tested before starting a family."

The charity screened 203 people across the community this year but believes it needs to reach 2,500 annually.

Its next screening in Golders Green on January 19 is part booked, but with more spaces, Ms Sarig would love to see filled.

Ms Sarig said: "We are also planning another in February and we hope to accommodate as many people as possible."

Jnetics has also reported increased support from religious movements across the community.

"We have had rabbis get in touch, asking how they can be of more help," Ms Sarig added.

"They have offered to run talks, give out information and encourage their communities in any way they can. It is fantastic to receive this level of support."

GENEius will work with schools, university organisations and Jewish marriage authorities over the next three years.

"Long-term, we want to engage people from a young age, breaking down the stigma or fear people might have around genetic illness, so screening for recessive Jewish genetic disorders (JGDs) becomes as routine here as it is elsewhere in the Jewish world."

Ashkenazi Jews in London can be tested for Tay-Sachs free on the NHS. However, there is no free screening for any other genetic disorders.

"Ideally, the NHS would provide free screening for severe JGDs and we are working hard with organisations such as the JLC, the Board of Deputies and the Jewish Medical Association to try to secure this," Ms Sarig said.

Jnetics anticipates that GENEius will cost £1.3 million over the first three years. This will enable free screening for sixth-formers and students.

"We have launched a fundraising campaign and people have been in touch asking to support this within the community," Ms Sarig added.

To donate go to the GENEius Just Giving page

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