On Thursday 14 Nov 2013, New North London Synagogue (NNLS) hosted an evening called ‘Take the Test not the Risk’ where Jnetics gave an informative presentation about the status of screening for Jewish genetic disorders in the UK.
Katrina Sarig (Jnetics Executive Director) and Sara Levene, (Principal Genetic Counsellor at Guy’s Hospital and a member of the Jnetics Science and Medical Advisory Committee) took it in turns to captivate the audience with developments in genetic testing and its relevance for the Jewish community.
Together they covered a range of topics including: what are Jewish genetic disorders, how they are inherited and their prevalence in the Jewish community. Sara clearly explained what it means to be a ‘carrier’ and talked through the different options for carrier couples who are at increased risk of passing on a genetic disorder.
The audience was shown a short video which gave an insight into the reality of living with a severe genetic disorder. Jane’s Story shows a powerful and extremely moving interview with Jane Pearl about the experience of living with a child affected by familial dysautonomia. To view this video, please click on this link)
The final section of the evening focused on ‘what can be done’ in practice to better prevent and manage these severe genetic disorders. Sara presented the genetic testing services currently available in the UK and then Katrina described Jnetics’s work to establish a community screening programme that offers a test for the most severe Jewish genetic disorders.
She announced the exciting news that, in partnership with Great Ormond Street Hospital, Jnetics will now be holding the first-ever screening session for this test on Sunday 9 Feb 2014 at NNLS.
There were many questions relating to different issues that were highlighted in the presentation and people had a chance to share views over refreshments after the talk.
If you would like to learn more about Jnetics’s activities, our awareness-raising events or details regarding upcoming community screening opportunities, please contact us at: info@jnetics.org