Nobody thinks about genetics when they’re falling in love.
We sure didn’t. And when we were newly engaged, I pointedly chose not to go for the genetic testing. I was sure about our love, but I wasn’t sure our engagement could survive a genetic bombshell. He had been all-too-clear that it was really important to him to have biological children.
So I decided to wait until we were a fait accompli. When we decided to start trying for a baby, the OB-GYN hit me with the Ashkenazi panel. Turns out I’m a Tay-Sachs carrier. That, and a slew of genetic questions my sister’s pregnancies had already raised, landed us at a geneticist, who concluded that my husband was not a Tay-Sachs carrier. And that a strange genetic disorder I had could double our chance of miscarriage (odds that I’ve been blessed to beat twice now).
I am so glad I did all this pre-pregnancy. Initially the pre-conception OB-GYN appointments had felt a little Type-A to me. But the weeks between finding out I was a Tay-Sachs carrier and he wasn’t would have been unbearable had a fetus already been growing. Instead they were just…uncertain…as we pondered the possibility that we might need to take a very different route to parenthood.
I called our geneticist recently to ask a follow-up question. Six years later, and she still remembered us–apparently we were more genetically interesting than most (I’ve always suspected as much). She commented that, though our children are at a higher risk of several genetic diseases, we should hold off having them tested until they’ve reached the age of consent.
For some reason I found this strange. There are so few limits to the types of medical decisions we can–and do–make for our children. Why should genetic testing be any different? Am I somehow affecting their destiny by finding out their genetic makeup? Would it be some kind of violation of their human rights?
I’m not sure. And yet, I think I’ll honor the doctor’s advice. I will certainly give them the information about their elevated risks, and when the time comes, I hope that they’ll get tested. But at least they can have the same choice I’ve had—to marry for love, not genetics (if they so choose), and figure out the rest when it’s right for them.