SANDI MANN

Rivals turn genetic testing into a mess

DO you remember the old joke about the Jew stranded on a desert island who builds two shuls — one to attend and one that he can have a broiges with and refuse to set foot in?

It is amusing because the Jewish community seems particularly adept at building rival community organisations when members fall out with each other — sometimes ending up with too many communal institutions that do much the same thing.

This worrying yiddishe trait of setting up an alternative organisation when we have a broiges with the original is illustrated dramatically with the tale of two modern Jewish genetic testing organisations.

If you have a teenager in your family, you may already be aware of genetic testing facilities for Jews. Your child might already have been tested. If you don’t have teens yet, read on because the choice of Jewish genetic testers is of vital importance.

Dor Yeshorim is a genetic testing organisation set up in America to cater for Jews (worldwide) who want to ensure that their shidduch — or potential marriage partner — would be a good match in terms of avoiding the genetic diseases that Jewish people are most prone to.

The idea was that young men and women ready to start dating could get tested; the results would be kept on a confidential database and when a match was proposed, each party could check the database to see if they were compatible before even meeting.

Dor Yeshorim is arguably aimed more at religious Jews who have arranged introductions, rather than those who meet in any unarranged way.

The system does not allow any individual to know their own test results (or those of any potential partner). All that potential couples are told is whether they are a match or not. Not ideal perhaps for more modern couples who date outside of the shidduch system, but one that Dor Yeshorim believe avoids any “stigma” of being a carrier for a genetic disease such as Tay Sachs or cystic fibrosis.

Inevitably, someone had a broiges with DY and set up a different genetic testing charity (UK based this time) called Jnetics.

And this broiges seems entirely understandable; according to an article by the founder of Jnetics (tinyurl.com/y8gx687k), she and her husband went through the DY system, were declared compatible — and went on to have a child with a serious genetic illness.

Their broiges with DY is that DY does not offer testing for enough diseases — including the one their child was born with.

So Jnetics tests for more diseases, though the DY website seems to imply that they actually test for more relevant ones (“more is less”, they say). Confused? Me, too.

But the main difference between the two is that Jnetics believe that adults are fully entitled to know their own status; they have thus done away with the key component of the DY approach, which is that no one must know their own genetic status.

Jnetics want to break down the stigma and fear of being a carrier and ensure that anyone tested knows their own results. DY, on the other hand believes that “the freedom to not know can be more liberating than the right to know”.

OK, so there are now two different Jewish genetic testing organisations — that’s OK, right? No different from any other duplicate Jewish institutions doing similar things, right?

Well, no, not if you are a young person trying to decide between the two. When my child’s school emailed us to offer Jnetics testing, they later confused many parents and teens by sending a second email “selling” Dor Yeshorim, which included a handy “comparison table” comparing their service to that offered by Jnetics — and in which, unsurprisingly, DY seemed to come out more favourably on a lot of markers.

And here’s the real nub — if an 18-year-old takes advantage of being tested by Jnetics in their Jewish secondary school in Manchester or Leeds, they can’t at a later stage also use DY. DY will refuse them on the basis that they know their own status.

So, imagine that there is a young person who gets tested by the more “mainstream” Jnetics at 18, then goes on to become frummer (which is quite common these days) and wants a shidduch — a process that relies almost exclusively on DY.

Many potential religious partners won’t consider them without a DY seal of approval — and they can’t get that because they already used Jnetics.

It all seems a bit of a mess really, and worryingly, could lead to indecision that might mean young people don’t get tested for serious genetic diseases at all; the founder of Jnetics even states that “it is better not to do genetic testing than to be tested through Dor Yeshorim” (https://www.collive.com/show_news.rtx?id=43267) — which Dor Yeshorim, in response, branded “reckless” (https://www.collive.com/show_news.rtx?id=43508).

I do understand the ethos of both organisations, but it is a shame they can’t put their differences aside and work together with their very important shared purpose. Suddenly the desert island Jew joke doesn’t seem quite so funny after all.

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