Leap of faith: the power of pre-conception genetic tests

Before I was born, my parents had tragically lost a young son to cancer, and my sister had been born with hydrocephalus (water on the brain). They decided to go for genetic testing to try and discover if there was anything underlying that could be identified. They got the all clear and as a result I was conceived.

Since then things have come a long way in genetic testing, and the Jewish community and those of Jewish heritage should be major beneficiaries of these advancements.

As with so many things, knowledge is power. We should be incredibly grateful that we have charities like JNetics empowering the community with knowledge, leading the way with a whole raft of genetic testing offerings – particularly important when couples are getting married. As most people who are carriers of genetic mutations are completely healthy and unaware, it can be a tricky conversation to have. But genetic testing is increasingly important, especially for those couples beginning to plan a life together and thinking about children.

More than one in three people with Jewish ancestry is a carrier of a genetic disorder, and if both partners are carriers of the same condition, they have a 25 percent chance of having a child  who is affected. So while it may not be the most romantic conversation for a couple to have, it’s a really important one, ideally as early as possible. It doesn’t have to mean there are no options, but knowing can help us seek treatments or act to avoid tragedies.

Jewish law has tried to stay abreast of medical advances and changes, ensuring as a community that health is prioritised and we can benefit from science as it grows. Widespread genetic testing for Tay Sachs has led to very few births of children with this cruel, deadly disease, once particularly common in the Ashkenazi community.

But this is a complicated issue. Iceland has famously more or less eradicated people with Down Syndrome since in-utero testing was introduced in the early 2000s, because nearly 100% of foetuses that tested positive were aborted.

To suggest that these lives have nothing to contribute to the world is, to me, anathema. But empowering couples to avoid having to watch their children suffer immeasurable pain over the course of severely shortened lives, as is the case with diseases such as Tay Sachs, is very different.

Judaism has never shied away from using medical knowledge and advances that seek to benefit humanity. So while testing is a scary thing to face, and might not be the thing we most want to do (and the results can never come fast enough), let’s focus on making knowledge power, as Judaism always has.