Jnetics can now test for almost 50 Jewish genetic disorders – CEO Nicole Gordon tells us why this work is so vital
Founded in 2009, Jnetics is a small charity with a big ambition – to make a real difference to the prevention and diagnosis of Jewish genetic disorders. As well as raising awareness in the field, Jnetics also provides support to parents and families, and screenings for severe recessive disorders. Until recently, this only included testing for nine conditions but, thanks to their research and development team, the charity now screen for up to 47.
“This is a hugely exciting development in the history of Jnetics," said CEO Nicole Gordon. "For the first time we have uncovered 15 conditions prevalent in the Sephardi and Mizrahi communities. We can also pick up further conditions common in the Ashkenazi community. We are now encouraging any young Jewish adults with at least one Jewish grandparent to come forward and be tested."
Kayser family (left) and Sakol family (right)
The Jnetics Clinic runs online every first Thursday and third Thursday of the month. Upon booking an appointment, you'll be sent a screening pack, which someone will talk you through during your appointment. As Jnetics works in conjunction with the NHS, it means that anyone found to be a carrier of certain genetic conditions can be streamlined into the NHS system.
The new conditions recently added to Jnetics' testing have been carefully selected based on "a number of inclusion criteria and under the guidance of the organisation's scientific and medical advisory committee", explained Alegria Vaz Mouyal, Jnetics Research and Development Manager. "All the genetic conditions are recessive, meaning there is only a 1-in-4 chance of having an affected child if both parents carry the faulty gene."
Testing kit
Jnetics currently screens Year 12 students in all Jewish secondary schools across the UK and Jewish students at UK universities, as well as through the Jnetics Clinic, where young couples thinking about starting a family are encouraged to get tested.
“Currently, so many health issues are beyond our control," added Nicole Gordon. "Screening for Jewish genetic disorders and managing the risk of having a child with one of those severe life-threatening or life-shortening conditions is not."
By Danielle Goldstein
For further info on Jnetics and how to get tested, visit jnetics.org/screening.