Here at Team STG, we’re passionate about Jewish genetic carrier screening. I know it’s probably not at the top of anyone’s wedding planning to-do list – but if you and your partner think children might be in your future, it should be! A simple saliva test can go so far toward ensuring the two of you start the healthy family of your dreams – and while the process of getting screened can seem daunting and even scary, I promise it really isn’t!
That’s why we’re so excited to be sharing the following post from our friends at Jnetics, a UK-based charity that provides accessible carrier screening for some of the genetic diseases most common among Jewish populations. They’ve demystified the screening process from start to finish, so you can take the first step toward taking control of your future family’s health.
If you’re in the UK and planning to start a family within the next few years, read on to learn more about who they are, what they do, how you and your partner can get tested – and, most importantly, why you should.
“We recently got engaged and it was really important for us to have the screening test. Due to COVID-19, the test was conducted through Zoom and the test components were sent to our home address. The whole process was really easy, and we would recommend taking the test through Jnetics.” -Natalia and Daniel, recently engaged
What is Jnetics?
Jnetics is a UK-based charity that tests for life-threatening Jewish genetic disorders (JGDs). We are the only organisation dedicated to improving the management and prevention of these disorders in the UK. We focus on recessive genetic conditions that, although not exclusively Jewish, have a significant impact on the lives and well-being of Jewish people.
Our mission is to eliminate new cases of these devastating disorders from the Jewish community by providing accessible carrier screening to all young Jewish adults. Our hope is that genetic screening becomes standard practice, thereby erasing these conditions and saving a countless number of lives.
It is important that anyone who is planning on having children, either now or in the future, get screened in order to make informed health decisions that can prevent them from passing on a devastating genetic illness to their child.
“We were always aware of the importance of getting screened being both from an Ashkenazi heritage, and Jnetics made it easy, even in Covid-19 times! The team was really communicative and very quick at responding to emails, explaining the process, setting up zoom calls and organizing getting tested.” -Jodie and Yehudah, recently engaged
What is genetic carrier screening?
Genetic screening identifies if a person carries a gene associated with a genetic disorder. Carriers typically do not show symptoms of the disorder that they carry, and because of this, are unaware of their status unless screened.
Although being a carrier has no impact on your own health, it does mean that you are at an increased risk of having a child that is affected by the disease that you carry; If 2 carriers of the same disorder have children, there is a 1 in 4 risk in every pregnancy that the baby born will suffer for the condition.
Fortunately, there are ways for ‘carrier couples’ to manage this risk and have healthy children (such as Prenatal Genetic Diagnosis), but they are only available if both partners have been identified as carriers first. This is why screening is so important.
“We felt it was important to get screened to help ensure the best quality of life for any future children. The screener was friendly and helpful and made the whole process comfortable and straightforward from start to finish. We would strongly recommend all individuals, especially couples, get screened by Jnetics.” -Zechariah and Zoë, newly married
What does Jnetics test for and how?
Jnetics, in partnership with the NHS, offers genetic screening for 9 of the most severe JGDs. Screening is available to anyone aged 16+, with at least 1 Ashkenazi Jewish grandparent via the Jnetics Clinic based in Barnet Hospital.
The bi-monthly Jnetics Clinic, which due to COVID-19 has now moved completely virtual, is offered at a subsidised rate of £240. Unlike other genetic screenings, our testing is done through a saliva sample rather than a blood test, making it a quick and easy procedure.
The clinic process is fairly simple: You book an appointment online, a screening pack is sent to your doorstep, and at the time of your appointment a genetic counsellor gives you a call and helps fill out the forms, complete the saliva sample, and answer any questions you may have. Then, all you have to do is post the sample back to Jnetics, and a month later your results will arrive via email.
In the next few months, we plan to expand the screening panel to include Sephardi disorders along with further disorders prevalent amongst the Ashkenazi Jewish community.
“By having the screening done it will hopefully give us peace of mind for when we do decide to start a family. The whole process has been so simple and straightforward, and we would encourage it to be something that is spoken about early on in a marriage” -Talya and Joe, newly married
Why we do what we do.
Too many babies are being born today with these truly devastating and wholly preventable conditions. Jnetics exists to ensure that no young couple should have to suffer the pain of having a child born with one of those rare genetic life-threatening and life-shortening conditions.
Although the idea of finding out that you are a carrier may seem daunting, getting screened by Jnetics could save your child’s life. The disorders that we test for are extremely debilitating and life-shortening, and, if this information is known before, could be COMPLETELY PREVENTED.
Whilst there is a lot of uncertainty in the world today, what we can control is our genetic future. We have the power to manage these Jewish genetic disorders. Our testing provides vital information to those who are unaffected carriers, giving them the opportunity to give birth to healthy children, and, hopefully, brings us one step closer to completely eradicating these conditions from the Jewish community.
Get in Touch with Jnetics
020 8158 5123
