Photo by: Luca Volpi

To Know or Not to Know: Genetic Testing

by Claire Bidwell Smith
Photo by: Luca Volpi

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.

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On topic article in Washington Post yesterday.

Nice article. I still think, though, that a history of cancer in the family (which I have too) is quite different from knowingly having a child with a serious degenerative disease, especially if we are talking one that will cause the child great suffering. Just saying.

I'm not sure about random genetic testing, but I had a bone marrow disorder that has since been cured. I was tested and it was found to be genetic. My whole family then got tested. As a result, my husband and I have two amazing kids by adoption, as does my brother. There is no possible way I could in good conscience knowingly pass on a life-threatening gene to my biological child. I just wasn't able to do it and live with myself, even if it was a 50% chance of the child having the gene...

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I loved the article you wrote in regards to genetic testing. I have this to say--- if you do testing and find out your a carrier for a scary disease, then the husband getting checked out is wise...

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Claire, great article. In think you are thoughtful and wise. It makes me think, OK, what is my life about? Answer: Relationships.... beautiful. None of us truly know how long we have on earth. But His grace is sufficient.

I have read the book STILL ALICE, about a woman scientist with children who has early Alzeheimers. Her daughter decides to get tested, finds she has the gene for Alzeheimers and selects the embryeo that does not have the gene to be impregnated with. I think knowledge is power, like finding out that I have diabetes...part overeating...part shame...just a choice in what I do with the knowledge to make my life a better life...starting today.

I would like to add that as it might be reassuring to go through some tests before or during pregnancy in order to take active support towards health of both, correcting whatever can be corrected, as much as possible through natural healing methods, then you may also recur to faith and prayer...

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just beautiful!!! GOD bless...i totally agree with you!!!

I too lost both parents to cancer-within 5 months of one another & when I was 22/23. I have not yet been screened genetically but do premptive testings. I too worry that I will die young & leave behind my children. Sometimes when I cuddle with my daughter before bed, I just stare at her & hold her so tight, trying to take all of her in, praying to G-d that he let me see her raise a family of her own unlike my parents...

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Genetic testing is a responsible choice is someone does not
think they could handle the effects of having a child with a disease.
Taking care of a child with a genetic disorder is a big task emotionally and financially. I happen to have a child that was born with a genetic disorder that is extremely difficult to handle sometimes. I personally would not change anything because I love her more than the world itself...

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Genetic testing is a loaded gun. I speak from the fired side. I and my children have a genetic disorder. I begged to be tested and was told no, in a rather patronizing way by my drs. Then I lost a child. The same drs refused again to test, said it's a fluke. Then my 2 year old had a stroke. I got new drs the old ones won't even talk to the specialists. I recommend testing if you think there is possible problem...

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I would totally get tested so that way we know what genes are being passed down.

I felt the same way about religion before deciding to have children...if you can't decide which fate they will have, or choose to have, should you have children at all!? There's always a possibility they could have diseases, predisposed personality or health issues, or choose to take the wrong path in life...but no one knows the fate of their children even with healthy genes. My DH's sister died in a car accident...

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I did have genetic testing done because of my family history for cancer. I had Genomic testing done which is checking the systems vs a specific illness. I also got natural ways to prevent the illnesses I was likely to get which helped to guide my already healthy eating. One hug surprise was that I found out I have an inflammation gene that is screwy and that is much more likely to have heart issues and hardening of the arteries...

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Love this article. Our family can relate to this experience with genetic testing (though we DID have it done and still had children). Thank you for putting it so well in that last paragraph " is more than worth it."

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