The first community screening for a group of Jewish genetic disorders will take place at Finchley’s Sternberg Centre on February 9, launching a rolling programme of screenings across the UK during 2014. Until now, the only community-based screening programme has been for Tay-Sachs.
Jewish Genetic Disorders UK has organised the screening partnership with Great Ormond Street Hospital for Children and Guy’s and St Thomas’ NHS Trust. Anyone over 16 with at least one Ashkenazi grandparent can be tested for nine of the most severe genetic disorders, including Tay-Sachs, that are more prevalent among those of Ashkenazi ancestry.
“We are tremendously excited by this event,” said Katrina Sarig, founder and executive director of JGD UK. “Community screening has the potential to make a real difference by reducing the amount of suffering caused by Jewish genetic disorders. Everybody planning to start or expand their family should have the opportunity to find out if they are at increased risk.
“The Jewish community has long been aware of Tay-Sachs, but advances in genetics mean that we are now able to identify several other disorders that are also extremely debilitating. One-in-five Ashkenazi Jews are carriers of at least one of these diseases. These conditions are utterly devastating for those affected and their families but they can be prevented by effective carrier screening.”
JGD UK trustee Ian Pearl is the father of a child with familial dysautonomia, a life-limiting genetic disorder. “A simple blood test could have identified our risk and helped prevent so much heartache,” he said. “We have campaigned for awareness and are delighted that this much-needed service is now available to the community to give others the choice that we did not have.”