To Know or Not to Know: Genetic Testing

This issue is a loaded one, and it’s one that seems to surface all the time these days. Just the other night we had some friends over for dinner, a couple, and at one point, while I was in the kitchen with the wife of the pair, we were talking about babies and when to have them. My friend revealed that she had decided to do some genetic testing before she and her husband began trying to conceive. She had already found out that she was a carrier for a kind of scary disease and now her husband was being tested to see if he was also a carrier. “So what happens if he is?” I asked. “You don’t have kids?” She didn’t have an answer.

Another friend of mine lost her mother to cancer in March and now she has found out that her father has cancer as well. She is now unsure of whether or not she wants to have children with her partner, who has recently raised the question. She is concerned about passing along cancer genes, and she also feels fearful of dying prematurely from cancer herself, leaving her children without a mother.

I actually met with a geneticist myself several years ago in California. My primary care doctor referred me, after learning of my family history. Both of my parents died of cancer before I was 25. I felt nervous about the meeting and almost canceled it, but at the last minute I decided that I could at least go and then decide later if I wanted to have the tests. The geneticist was a young German woman and I sat across from her in my jeans and high heels. I remember having made a conscious effort to look good, as though that would keep her from assuming that I might be riddled with cancer genes. I told her about my family, about all the different people who had had cancer, my parents, various aunts and uncles, a grandparent. It’s not that she wasn’t warm, but she lacked empathy. It’s a science to her, I had to remind myself, as she scribbled out my deathly family tree.

When I was finished reciting all that I could to her about my family medical history, she leaned forward, turning the chart she’d drawn towards me. She pointed out how, on my father’s side, it appeared that all the cancer was environmental, meaning that the majority of it was likely from outside causes, namely excessive drinking and smoking. On my mother’s side it looked a bit more hereditary with both my mother and grandmother having had colon cancer. It makes me nervous even to write that. I can feel a flush rise up through me just thinking about it. For so long, I’ve felt a lot of shame about the cancer in my family, as though it’s something I can control or something that I brought on. I remember crying to a shrink years ago because I was afraid that no mother would ever let her son marry me since I might bring the scourge of cancer into the family. I still feel that to a certain degree. Like I’m tainted, like there’s something wrong with me.

At the end of the meeting I decided not to have the tests. The geneticist thought that I should. It would be good to know about, she said, a good thing to prepare for. I shook my head. There was nothing I would do differently were I to find out that I carried specific genes for cancer. As it were, I was already trying to be as healthy as possible, taking care of my body, my spirit, and living my life as though it were my only. Yet, were I to find out, it might cast a shadow across it all, one that I did not want.

Now, when it comes to being a mother, to having children, to passing down these genes, I suppose it is a different thing. There might be different considerations to make, in contrast to those I might have made when I was single and 26. But the thing is this. I’ve thought about this conundrum a hundred times: If I knew from the outset that my parents would both get cancer and die before I was 25, would I still choose to do it all over again? And the answer is a resounding yes. I can only hope that my children will feel the same, were things to go that way. Even in the briefest moments of walking Veronica down the hallway to her crib, just after she has fallen asleep, her soft little head against my shoulder, her breath, warm on my neck, I think: If this moment is all there ever is, it is more than worth it.

Claire Bidwell Smith writes about life, love and parenting on her award-winning blog Life in Chicago.