By: Estie Rose

Sitting around my friends’ Shabbat tables and meeting new people, the conversation inevitably goes to “do you work outside the home?” When I tell people that I am a genetic counselor for JScreen, I almost always get to learn about their carrier screening history. I become a magnet for stories about genetics and how it has impacted people before marriage!

Carrier screening is recommended for all people planning to have a child, and especially for those with Jewish ancestry. If both members of a couple are found to carry the same condition, each of their children would have a 25% chance of being affected with this condition. Carrier couples are encouraged to meet with a genetic counselor, who will review these risks and the options for building a healthy family. 

Carrier screening before marriage has pretty much become the norm in the Orthodox community.  We have finally come to a place where one is not stigmatized for their carrier status and where checking for genetic compatibility has become as commonplace as setting up a wedding registry and booking the hall for the wedding. In fact, I have seen that many rabbis will only agree to be mesader kiddushin at weddings if the couple has completed their carrier screening. For couples who remain together, even if they are both carriers of a genetic condition, it is important that they are made aware of their risk so that they can be empowered with the information and plan accordingly.

After many Shabbat table conversations about carrier screening, I began to notice that most of these stories had happened years ago (pre-engagement or marriage), but I hadn’t heard much about people’s experiences once they’ve already started their families.  I gently remind people that the testing they did years ago is likely outdated and that they should consider getting retested before their next pregnancy, but I usually get pushback. “Why should we test … if we already got the green light to have children? …if we already have healthy children? …if there’s nothing we can do about it at this point?” 

The answer to all these questions is simple: you are a carrier for something whether you know it or not. Carrier screening has evolved over time; we are now screening for hundreds of diseases and the technology we currently use for testing is better than it has ever been.  So, even if you were told you were genetically compatible years ago, it is possible that this would not be the case if you checked today. Maybe you were not initially screened for a condition you carry, but if tested now, you’d have a positive result. Maybe you and your spouse were fortunate to have healthy children, despite your being a carrier couple (remember, carrier couples are not guaranteed to have affected children; there is a 25% chance for any child of a carrier couple to be affected). 

If you do find out that you are at-risk to have affected children once you are already married, there are still options for adding on to your family safely. Your genetic counselor will review your options, which include: using assisted reproductive technologies (such as IVF or egg/sperm donation) to ensure that you are not passing along the disease to your future children, taking a chance (with the option to test a baby during a pregnancy), or not having any more biological children. I understand that each of these options come with pros and cons, but carrier couples who are aware of their risk have the opportunity to get ahead of it. For some, involving a third party, such as a rabbi or a yoetzet halacha, might be helpful in the decision.

Carrier screening is now easier than ever. JScreen offers affordable at-home saliva testing with genetic counseling services via phone or Zoom, and is available to anyone of reproductive age in the US. In Israel, genetic testing and counseling is available through your kupah or local hospitals, at a cost. In the vast majority of cases, new couples and those who update their testing receive good news. But in the event that there is a problem, it is better to be prepared. If new testing is available, please update your testing. You never know what might happen.


Estie Rose is a certified genetic counselor and outreach coordinator for JScreen. She has a special interest in community education and serves as a resource for individuals who are facing genetic health issues.