Genetic Testing: A Layman's Summary

The topic of genetic testing within the realm of dating/marriage came up in a series of comments on one of Bad For Shidduchim’s posts a short while ago (I forget which one, sorry). Most people who replied knew some things but not much. The focus was discussion of Dor Yeshorim, and open testing was barely mentioned. Having had some experience planning and running genetic screening events at YU, I will now attempt to give my non-professional break-down of the issues involved and why this is such an important part of the overall shidduchim process.

I also highly recommend listening to this lecture/shiur that just took place at YU which features a presentation by a licensed genetic counselor followed by Rav Willig speaking about the moral/halachic imperative to get tested before marriage.

Why is genetic screening significant? Children are produced within marriage by a fusion of a pair of genes, one side from their mother and one from their father. Every ethnic group has some sort of genetic mutation in their group’s overall DNA spectrum that features certain genes that don’t work and thus can cause problems. Generally, genetic testing deals with recessive disorders, which means that you need a copy of the defected gene from both parents to display the symptoms of the disease (as opposed to a dominant disorder, wherein one copy of the gene will make child affected by the disease). Someone who only has one of these mutated genes along with a healthy copy of that gene (one from each parent) is called a carrier – meaning that they are unaffected by the disease/syndrome coded for in that aberrant gene.

Percentage wise, for two parents that are carriers of the same disease, 50% of their children will be carriers (but unaffected), 25% will be totally free of the affected gene, and 25% will be born with the disease. So basically, with a couple wherein both the husband and wife are carriers for a particular disease, they run the risk of a combination of their egg and sperm that will produce a child that suffers from a potentially or actually fatal genetic disease. Back in the day, before we had advanced our level of scientific study to the point where it stands now, the children that result from a marital union were really the luck of the draw. As such, there were unfortunate couples that had a number of children who died (often early in life) due to the manifestations of these diseases.

Clearly, this is an extremely serious matter (listen to the shiur for the full halachic perspective from Rav Willig).

At present time, we now have the technology and scientific knowhow to check the genetic code of a particular individual and identify whether or not they “carry” genetic coding for these recessive genetic diseases (such as Tay-Sachs or Gaucher’s). As such, young men and women can be equipped (and I’ll explain the two different means of testing in a moment) to avoid heartbreak and personal tragedy by not dating and marrying a spouse who would (if they married) greatly increase the statistic likelihood of having children that suffer and die from these diseases.

Now for the two means of testing: closed testing (Dor Yeshorim) and open testing (like NYU or a number of other institutions).

Most people are aware of the history that led to the creation and perpetuation of Dor Yeshorim, so I won’t attempt to retell that here. Dor Yeshorim utilizes closed testing, which means that they collect 4-5 vials of blood from a young man or woman looking to date for marriage and perform a genetic characterization of their DNA.

The donor is assigned a serial number, which they must record for perpetuity (or at least until they get married) – and this is all they ever know. Dor Yeshorim does not assign a name to their file, nor do they ever release the results of their DNA characterization to anyone (potential shidduch and the actual person as well). You will never know what, if anything at all, you may have within your genes (see this article for why this has been seen as controversial). The stated reasoning behind this is to prevent any possible social stigmas (IE it’s “Bad For Shidduchim”), or personal neuroses stemming from the knowledge that you’re a carrier.

At some point in the dating process, the guy and girl exchange numbers, call up Dor Yeshorim, type in their numbers (both people have to do this, or Dor Yeshorim thinks someone is just being nosy – I made this mistake once early on, thinking that I would be trusted to tell the girl – they ended up calling the number she had registered with, which was her home number, and her mother answered the phone, unaware that she was dating!). They check their database and call back within the day (usually an hour or so later) to tell you to go ahead with the shidduch, which means there are no genetic incompatibilities, or that there is a problem. In that case, they tell you what it is since some potential conditions can, indeed, be worked with using modern medical technology such as In Vitro Fertilization (IVH) along with Pre-Implantation Diagnosis (PGD) – but at great financial cost and emotional turmoil (just ask any couple you know who is, rachmana latzlan, experiencing fertility issues).

Open testing, as done by NYU and a few other genetic testing organizations also requires obtaining several vials of blood, and similar tests are performed to characterize potential genes for potential genetic diseases. However, this method if often more comprehensive than Dor Yeshorim, which only checks for a select list (9 or 11 I think) of genetic, recessive (as opposed to dominant), fatal diseases. In a few weeks you receive a full print out of your results, telling you what you are a carrier for (if anything at all).

In the process of open testing, it is up to you to match notes with your shidduch to see if there are any incompatibilities. While some may be bothered by knowing what they have in their genes, it really isn’t a big deal at all, and literally has no affect on your life other than making sure that you don’t meet/date people with whom you would potentially have children affected by a fatal disease. A friend of mine asked Rav Tendler asked him what he should do in choosing Dor Yeshorim or NYU, and Rav Tendler replied, “Aren’t you a big boy now, can’t you handle knowing about your genes?”

Truthfully, the Dor Yeshorim system really is designed for communities that are not well-versed in secular knowledge (like sciences such as biology) and thus don’t understand that being a carrier isn’t a big deal. In very finicky shidduch systems, like in the more right-winged or Chassidic communities, where people do freak out over every little thing, this can be an issue that is troublesome for carriers. Whatever some more “modern” people might say about this, the fact is that incidences of Tay-Sachs have been virtually eliminated from these communities for a number of years now.

Dor Yeshorim has basically become a standard of sorts, since the vast majority of Orthodox girls get tested through them by their senior year of high school, or while in Israel. Thus, for guys who don’t get tested so early (which is seemingly stemming from a teshuva in Igros Moshe which recommended specific ages for young men and women to get tested – back in the day when open testing for Tay-Sachs was all that was available – listen to Rav Willig for more info). Thus is makes sense for a lot of people to do Dor Yeshorim just to be able to match up their status with girls they’re going out, since 99.9% of them (which is a guesstimation on my part) of the girls they are set up with have already done Dor Yeshorim.

However, Dor Yeshorim a policy that they will not test someone who has already had open testing, since they are philosophically opposed to the idea of open testing. Rav Willig has poskined that if one wishes to do both, he/she should do Dor Yeshorim first (thus preventing any genaivas da’as when they ask you to sign the form stating you’ve not been tested openly beforehand), and then do NYU afterward. That’s what I did – so I use Dor Yeshorim when I need to check my status with a girl I’ve been going out with but I also know exactly what my status is.

Rav Goldvicht recommends within the YU community that the guy and girl should check with Dor Yeshorim after the 4^th or 5^th date where the relationship seems to progressing towards more serious territory, but not so serious that breaking up, if need be, would be such a big deal. He says that in America it has become a big “thing” to compare Dor Yeshorim much later, as a precursor to engagement, which is generally a bad idea – what if you think you’ve found the love of your life and suddenly you are confronted with the reality that you may not be able to properly have children in the normal way?

Rav Willig strongly recommends that if this happens to people they should end the relationship, regardless of attachment. There are plenty of other people to get married to, why put yourself in a potentially tragic situation of G-d forbid losing children, never having natural conception, and going through the emotionally draining (and financially costly) process of IVF and PGD – or even living with playing “Russian roulette” and the possibility of terminating a pregnancy? The halachic difficulties, not to mention that the psychological traumas involved in these situations are not easily dealt with.

Genetic screening is not 100% accurate, but the vast majority of tests (for the most common and major genetic recessive diseases) have a predictive success rate of 95% or higher. While not perfect (since the labs are not going through your entire genome), it’s much better than flying blind. Major poskim across the hashkafic spectrum strongly advise, or require their constituents to take advantage of genetic testing (in whichever variety they recommend).

So if you have been tested, great! If you’ve only done Dor Yeshorim, perhaps consider getting tested through NYU as well (they have a number of opportunities to get open tested at no cost to you, and insurance usually covers all, if not most of the cost – and NYU will pick up the rest of the tab, if need be). EVERYONE should do open testing once they’ve gotten engaged (having previously found out their proper compatibility with Dor Yeshorim) – the reasoning being that if you and your wife know exactly what you carry (and at best you might not carry anything at all) you will have a heads up regarding your children. If you both find out you’re clean of such genetic mutations, then your kids will never have to worry about getting tested (Rav Willig and his wife did/do this – “do,” because every few years a new test for a different disorder is finally released for use by labs, so it’s worth it to expand your knowledge base).

This is the end of my very unprofessional run-down of genetic screening for marriage. PLEASE take time to listen to this lecture/shiur to get the full picture of the process from both the scientific and halachic perspectives.