The Geniuses behind GENEius – GENEius

The Geniuses behind GENEius

My work experience at Jnetics
23rd July 2019
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As recently as the 1980s were healthy Jewish couples shocked and devastated to have had babies born with serious genetic disorders, such as Tay-Sachs Disease where rarely does an affected child make it to their 4th birthday. For these carrier couples genetic screening was far from common practice and accessibility was limited. However dedicated organisations and charities, today including Jnetics (established in 2009), made it their mission to seek to educate, inform and screen members of the Jewish community to prevent new cases of these diseases.

 

In March of this year I was fortunate to have had the opportunity to sit through an in school assembly led by Jnetics where my year group was introduced to the GENEius programme; having only vaguely heard of Tay-Sachs, I was taken aback by the statistic that 1 in every 5 individuals of Jewish Ashkenazi descent is a carrier of at least 1 of 9 Jewish Genetic Disorders (JGDs), concerning disorders for which the carried genetic mutations are far more prevalent in the Jewish population than the general population.

 

My year were told we were all eligible, under the GENEius programme, to be genetically screened free of charge; an incredibly worthwhile opportunity considering the full cost of screening is actually £250. This free screening is available to year 12s and university students across the UK and subsidizing by Jnetics means a reduced cost screening is available to adults given they have at least 1 Ashkenazi grandparent.

 

I turned up on the day of the screening greeted by a warm and welcoming team and a host of volunteers; the process, of an individual conversation with a trained medical adviser prior to the saliva collection, was exceptionally quick and simple. Only later did I come to realise the huge amount of effort and organisation that goes into a screening event.

 

For the past week I have been completing my work experience at the Jnetics office in North Finchley ; every screening event at Jewish sixth forms and UK universities, every clinic session for adults and every fundraising project is carefully thought out and organised in this small but lively office where a committed team of just 6 people work tirelessly to make genetic screening accessible to thousands of individuals across the UK.

 

I am grateful to have had a unique look in on Jnetics and meet the impressive people behind the organisations growing success; I can only hope more people get involved to help the charity reach their aims of ensuring screening for JGDs becomes a routine part of life for all young Jewish adults.

 

By Layla Sklar, JFS Student

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