Because my fiancé is converting to Judaism, I was very relieved that we wouldn’t need to do any type of genetic screening for genetic diseases that are typical for those of Jewish ancestry. However, we were talking to the Rabbi about whether there were any Jewish laws against in-utero genetic screening and the answer was complicated. The simpler answer was that undergoing carrier screening by the parents and then utilizing pre-implantation genetic diagnosis (PGD) to select out embryos that might not be viable is permissible in the Conservative movement.
This conversation led to the discussion of the necessity, then, for us to go through carrier screening. Again, I had completely put this out of my mind as something that we wouldn’t need to do because we weren’t both born Jewish. Our Rabbi disagreed and stated that he recommends it for all couples, even if both aren’t Jewish by birth. In his views, while it might not change the decision about getting married, it might change the decision about having children or how to have them.
This causes a lot of stress for me because I have several autoimmune diseases and my dad had Crohn’s disease. There’s a high likelihood that I’ll be a carrier for something. And if I am a carrier for anything, then my fiancé definitely has to be tested so that we can rule out that we aren’t both carriers for the same illnesses. Given my health history and the field I work in, my eyes are wide opened to the fact that there are many illnesses that I would not want to pass on to a child. There are many that, from birth to untimely death, allow for no quality of life. And as I read through the list of illnesses that are tested for, many of those are on the list.
We have opted to use JScreen, a service affiliated with Emory University, to conduct our screening. Why? I’ll be honest, anything I can do from my own home and mail back, I am all for. Additionally, neither of our doctors are Jewish or located in an area where they might be familiar with this type of thing. So for us, it really made sense to go with a third-party that specializes in Jewish carrier screening.
Cost for the screening is $149 if you allow JScreen to bill your insurance. Any cost beyond $149 that insurance doesn’t cover, JScreen covers. If you don’t want your insurance to be billed, the cost is $349. They also offer financial assistance. I opted to have my insurance billed. As someone with a complex medical history, I’m not overly concerned that having my insurance billed for this is going to adversely affect my life. My fiancé has to complete his registration separately, and he will most likely do that once my kit has arrived. JScreen does have to get a written order from my doctor, and that seems like that might be the lengthiest part of the whole process. Right now, that’s what I’m waiting for. Once they’ve received that, I’ve completed the kit and mailed it back, it takes three to four weeks for them to process and get the results.
JScreen had a few questions for me, and I had a few questions for them. Throughout the process, they’ve been incredibly responsive, which I really appreciate.
I asked my fiancé what we would do if we find out that I’m genetically defunct? The reason I say that is because if I end up not being a carrier for anything, he won’t have to get tested at all. I find that scenario highly unlikely as I believe I have carrier status for at least one condition on the list, so the question has been on my mind. My fiancé said we’d adopt. Just like that. That’s the difference between him and I. While I fight problems to get what I want (i.e. having a baby “the old fashioned way”), he feels that the simplest solution is the most obvious.
So six months before our wedding, we are embarking on a very stressful journey. While I guess knowing is better than not knowing, the prospect of the questions we may have to ask ourselves, and the decisions we might have to make, is staggering.
It’s pretty crazy to think about the fact that back in the late 1970s, my parents were required to get tested and were told by the Rabbi that if they were both carriers for Tay Sachs they couldn’t get married. Now, you can get tested for carrier status of over 200 genetic conditions from the privacy and comfort of your own home.
I hope to write a follow up post once we get further into the process. I know that just because we get screened, and crossing our fingers that we aren’t both carriers of the same condition, we can still have a sick child. I totally get that. But I hope the stress I feel right now provides peace of mind later. While we cannot rule out everything, there are some things we will be able to rule out, and I’m grateful for that.