Our community must not ignore its genetic heritage

November 24, 2016 22:58

While these days it is politically incorrect to refer to certain traits or features as being particularly Jewish, we cannot deny what is in our genes. And as well as the characteristics so familiar to us, these sadly also convey genetic illnesses. Many genetic illnesses are prevalent within the Jewish community, as we remain a tight-knit population that generally marries our own. Our only realistic answer is knowledge and understanding of how to manage our risks. In short, it's time for the Jewish community to take control of our genetic fate.

One of the diseases which is known to be prevalent in Ashkenazi Jews is Tay-Sachs. Being a "carrier" of the illness confers no medical problem to an individual. But if that individual conceives with a fellow carrier the chance of having a child with this devastating condition is one in four.

The National Screening Committee (UK NSC) has recently announced that it has no plan to offer a nationwide screening programme for Tay-Sachs or the other genetic conditions specific to the Ashkenazi population, including Canavan Disease and Familial Dysautonomia.

This is perfectly reasonable given that we offer no other pre-natal genetic testing in this country on a population basis. Because the risk of these rare conditions is concentrated in a few areas, a population-wide programme is unjustifiable. But the NSC acknowledges that testing is highly valued by the Jewish population and will make sure it is still available to those at higher risk.

Given this, we must acknowledge that screening for Tay–Sachs remains our own personal and community responsibility. It's up to us.

No letter is going to arrive in the post

No letter is going to arrive in the post like it does for cervical or bowel cancer screening. There may be no national programme but there is still provision for screening for anyone who is at risk of being a carrier. That means all Ashkenazi Jews can be screened within the NHS - but that you have to proactively request it.

Taking control of your health is part of modern medicine. Doctors also now expect patients to be in control. With so much access to information online, we no longer preach to the unwitting. Patients of all ages are now far more aware of medical terminology and treatments and should be on board for clinical decision-making. Thankfully, we no longer practice paternalistic medicine, and the patient's agenda is at the forefront of a good clinicians mind. The happy consequence of this open landscape is that it should make requesting screening easy.

My concern is that our beloved NHS is not well-used to proactivity. We react to health problems. It's not the culture to try and predict them. In contrast, in Israel genetic testing at the pre-conception stage is offered as a standard for a vast range of diseases. Yet here in the UK it accounts for very few GP consultations. We just expect people to get on with it. In my experience, patients only come to discuss starting a family if they have a background medical issue that may affect a pregnancy - one that they are already aware of. Given Tay-Sachs screening has NHS funding for everyone within the Ashkenazi community, pre-conception counselling with your GP should be the norm within the community.

In order to be proactive, it is equally imperative to ensure knowledge of genetic illness among the community is not lost. We have had such successful awareness and screening programmes since 1980 that only one in 360,000 live births is affected by Tay-Sachs. What is more phenomenal is that these births are rarely within the Ashkenazi population, because we have succeeded in sustaining the dialogue about Tay-Sachs. The concern for the future is that the conversation is lost - out of sight out of mind. We have seen this happen with vaccination programmes: once people forget how serious whooping cough is, they forget how important the vaccination is, leaving everyone vulnerable. We mustn't let this happen with genetic testing - we have to keep talking about our genes and what they can convey. We know about Tay-Sachs, but what of the other, less discussed genetic diseases? The group Jewish Genetics Disorders UK fights hard to keep the dialogue going.

It is crucial that we take control of our future by taking advantage of the screening provision that is on offer and maintaining awareness among the community. These illnesses are our heritage, but they don't have to be our fate.

November 24, 2016 22:58

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