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Captive audience for screening

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For a few hours on a cold November night, Brondesbury Park Synagogue was transformed into a medical facility as dozens of men and women, primarily young professionals, were tested by Jnetics.

"This is our twelfth screening since we started in February 2014,"said Katrina Sarig, Jnetics' executive director.

"We've had one in Manchester, 10 now in London and one in Glasgow."

Dr Joanna Ziff, the assistant director, said 55 people would be screened over the course of the evening.

"There are five screening adviser stations, with a mixture of doctors and geneticists doing the screening advice. We have genetic counsellors here as well, in case anyone has a slightly more complex family history and needs genetic counselling advice.

I didn't know you could get tested this easily

"We take any kind of family history of any of the nine recessive genetic conditions we cover. We also find out what their Ashkenazi ancestry is.

"Because the tests we are doing are specifically Ashkenazi, we need to know how many Ashkenazi grandparents they've got, because that will affect the accuracy of the test.

"And we obviously try and find out whether anyone is pregnant because then we fast-track the samples so they can get their results more quickly."

Those at the Brondesbury Park screening took a blood test. However, Mrs Sarig revealed that "going forward, we are committed to doing the screening through saliva tests". Saliva-based testing would make the service more accessible and easier to deliver.

Dr Stephen Marks, a consultant paediatrician, was one of the screening advisers at the session.

"I think it's important that in 2016, people are empowered with the information about the possibilities of carrying genetic diseases," he said.

"One of the things which has been difficult is getting the word out. In my experience, either people are finding out through social media, or they're finding out through family and friends.

"I think it's about learning a little bit more about what the implications are of having a genetic disease. People still think we're testing to see if there's something wrong with them when, of course, we're seeing if they're carrying one of the genes which could potentially cause their child to be affected if their partner also carried the same abnormal gene."

All those being tested who spoke to the JC said they had grown up with little or no knowledge about genetic diseases.

For example, Toni Gaventa said that before being alerted by friends, "I didn't know anything about this until a couple of years ago. And still people don't, lots of people don't."

"I went to JFS and we went for Tay-Sachs testing there," said Annabel Rose. But she had not known about other genetic diseases.

"Some of my friends had a problem and they were tested. Fortunately it was all sorted out but they encouraged us to all get tested."

Michael Jacobs said he was aware of the issue. "But I had no idea of the statistics, whether the diseases were historical, whether it was something that was a myth in the 50s and didn't really happen these days. And I didn't know you could get tested this easily, just going somewhere local.

"I think the awareness is probably a lot greater now than it was five years ago."

Mrs Sarig agreed that awareness of Jnetics services was on the increase but a great deal more needed to be done.

"Our aim is to get Jewish genetic education and screening to become standard practice within the community.

"At the moment it's still a case of only a limited amount of people being able to access it.

"Whereas by going through the schools and universities, by having the education integrated in the pre-marriage process, we want it to become a cultural norm, where people at the very least know about screening and can make an informed choice about whether this is something they want to do for their families."

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