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'Gene Machine:' New book explores pros, cons of pre-, post-natal testing

Posted April 16

These days, expecting parents can learn more than just their future child's gender at the doctor's office.

DNA research and testing can uncover any number of potential concerns - whether a baby may develop an inherited illness or suffer from a severe birth defect or if a genetic issue is behind a woman's multiple miscarriages.

The results can be helpful, but come with layers of other concerns for already anxious expecting parents.

Bonnie Rochman, a mom of three, started exploring these questions when she was pregnant with her first child 15 years ago and a reporter and parenting blogger for The News & Observer (where, for full disclosure, we worked together).

Today, she is the author of a new book, "The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have." Released in February, Rochman's book has been featured in The New York Times and NPR, among other places. It also has shot to the top of at least one best seller list on Amazon.

"Rochman’s thoughtful take highlights important issues for parenting in an increasingly high-information world," wrote Publisher's Weekly in its starred review of the book.

Rochman, who now lives in Seattle, will be talking about her book at 4 p.m., Sunday, at Quail Ridge Books in Raleigh. I checked in with my old colleague and friend to learn more about the topic and the book. Here's a Q&A:

Go Ask Mom: What sparked your interest in this topic? Why write a book about this?

Bonnie Rochman: I first started wondering about genetic testing in 2002 after I opted for a nuchal translucency scan when I was pregnant with my son. At the time, it was a cutting-edge test to gauge the chance of having a baby with Down syndrome. It was so new that the test was free because my doctor was in the process of getting certified to perform it and he needed pregnant bellies on which to practice. I eagerly volunteered, only to realize after the fact that I hadn’t spent much time thinking about what my husband and I would do if we didn’t receive reassuring results.

That experience of saying “yes to the test” without first thoughtfully considering why I wanted the test and how the results might change my experience of pregnancy stayed with me as I started writing for The N&O’s parenting blog, Triangle Mom2Mom.

When I began covering parenting and health for Time in 2010, I found myself writing regularly about new genetic tests, which were hitting the market at a furious pace. My coverage of genetics led to a cover story about the promise and pitfalls of sequencing children’s genomes, which served as the inspiration for me to keep asking questions. If you ask enough questions and weave the answers into narratives of real people, voila, you have a book.

GAM: When you're pregnant, there are so many options for tests. You cover in your book, for instance, that it's now possible to screen an embryo for disease. And DNA testing can lead to all kinds of discoveries about the future of your health or your child's health. How are these tests - the choices to get them and the results that come from them - shaping the way parents are building their families today?

BR: For starters, this ain’t your mother’s pregnancy. A generation ago, women got pregnant and had to wait nine months to see who emerged. Now, discovering gender prenatally is practically passe.

There are so many genetic tests offered at every stage of pregnancy that it’s really upended the experience of expecting a child. All this information can be empowering, but it can also create a lot of anxiety, especially because our ability to deploy all this incredible technology has really outpaced our understanding of what all the results mean.

GAM: There's a lot of science in your book, but also a lot of personal stories about families grappling with some of the outcomes of these tests. Tell us about one of those families and the decision they had to make.

BR: I love the story of Cara Greene, a little girl from Wilmington who had a mysterious disease that baffled her doctors. Cara’s parents took her to Duke, where doctors presumed that she had some sort of autoimmune disorder that required chemotherapy to kill off her immune system and start over from scratch. But an observant geneticist believed otherwise. She persuaded the family to allow Cara’s genome to be sequenced, or “read,” which cracked the code, so to speak, and also led to a treatment that left Cara’s parents in disbelief at its simplicity.

GAM: You're a mom. How did that experience inform your research and the writing of this book?

BR: The best part of writing this book has been connecting with so many families who’ve literally opened their doors to me.

As a journalist, I’ve never stopped being amazed that our job is to waltz into the tender moments of people’s lives — and that these people actually let us in! As a mom, I felt an overwhelming amount of empathy for parents of kids with various genetic conditions. I loved meeting the children, playing with them, reading to them. And I think I came away from the experience with a deeper sense of compassion.

GAM: What do you think the future holds for this kind of research and testing?

BR: Recently, two groups of scientists issued an important report about gene editing and in which situations it might be OK to edit eggs, sperm or embryos. In short, the report says that such editing would be permissible only in situations in which a couple wants to have a biologically related child and there is no other way for them to achieve this without passing on a serious genetic disease or disability.

I think that once we are able to accomplish this goal of editing eggs, sperm or embryos to avoid disease, it’s inevitable that people will start wondering how to co-opt this technology for purposes of enhancement. I wouldn’t be surprised if such tinkering begins within a few years.

Go Ask Mom features local moms (and sometimes former local moms) every Monday.

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