When expecting parents go for a doctor’s visit these days, they can find out far more than the gender of the child they soon will add to their family.
Advances in science make it possible for parents-to-be to not only determine the genetic makeup of their children but have an influence on it, too, through the head-spinning array of prenatal and postnatal testing.
Bonnie Rochman, a former reporter at The News & Observer, has delved into the many benefits of modern genetic testing and the potential drawbacks in “The Gene Machine: How Genetic Technologies Are Changing The Way We Have Kids – and the Kids We Have” (Scientific American/Farrar, Straus & Giroux, 272 pages).
In her first book, Rochman, a mother of three, leads her readers on a scientific journey in a conversational tone that makes the complex world of genetics seem simple. Through her interviews with doctors, researchers, counselors, spiritual advisers and the family of Cara Greene, a little girl from Wilmington who had a mysterious disease that baffled her physicians, Rochman explores the many questions that come with the many miracles of genetic research and science breakthroughs.
A Seattle resident now, Rochman returns to North Carolina for a reading Sunday, April 23, at Quail Ridge Books in Raleigh. She answered a few questions in advance of the 4 p.m. event.
Q: Why did you write this book?
A: I’m fascinated by the ethical issues underlying genetic technology. Genetics raises all sorts of thorny questions about right and wrong and who decides. It’s much more nuanced than writing about other aspects of health care because genes are a link between the past, present and future. In 2009 after I left The News & Observer, where I served as the paper’s first staff blogger on Triangle Mom2Mom, its parenting blog, I began writing about the intersection of parenting and health for Time magazine and Time.com. I found myself writing about genetics frequently, about the ethics underlying things like gender selection of embryos and new tests that can detect conditions such as Down syndrome early in pregnancy. In 2012, I spent months researching an online series and cover story about the promise and pitfalls of sequencing children’s genomes. After all the pieces were published, I realized I still had so many questions – not to mention so many great stories that I couldn’t include – that I decided to write a book about this brave new world of making babies.
Q: You became a mother while working at The News & Observer and began to write a parenting blog here in Raleigh. What role did that have in the birth of your book?
A: All three of my kids were born while I was a reporter at The N&O. In the early aughts, lots of newspapers were bringing parenting blogs online and experimenting with what a parenting blog could and should look like. I tried to bring my reporter’s eye to bear on my blog writing, so I think that my posts were more journalistic in nature than some other “mommy blogs.” When I did write directly about my kids, I made an effort to find a universal thread to pull through, to connect other parents to what I was experiencing with my own children. When I moved to Time, my beat was a combination of first-person essays and more reporting-intensive pieces. I used that same technique in my book. In fact, my literary agent asked me when I was writing the formal book proposal if I was comfortable writing about myself and my family in the book; he said that pretty much all nonfiction books these days have a personal component. Thanks to my grounding at The N&O’s parenting blog, that already came naturally to me.
Q: Do you need to be a scientist to understand this subject and read this book?
A: Absolutely not! I’m not a scientist and this book is not written for scientists. I like to say that I’m a humanist; that is, I’m interested in how technology is reshaping humanity. This book is for anyone interested in understanding how this process is unfolding. I was very diligent about the science to make sure that it’s accurate, current and on-point, but the book is really a series of stories that shed some light on the ways that genetic technologies are transforming society in general and parenting in particular.
Q: Does the potential to have all this genetic information and the possibility of gene editing make having children more complicated than it needs to be? Is there a point at which parents-to-be can have information overload?
A: Absolutely! There’s no question that pregnancy used to be much simpler. Four decades ago when I was born, my mom didn’t know if I was a boy or a girl, and now you’re hard-pressed to find parents who don’t learn their baby’s gender before delivery. It’s almost passe and it certainly pales next to all the other information you can learn: about genetic conditions that result from an extra chromosome and many other genetic conditions that result from changes in a single gene and still other genetic conditions that can be caused by tiny deletions or duplications in a gene. What gets really complicated is that our ability to detect many of these changes is outpacing our ability to understand what these changes mean. So geneticists or genetic counselors can tell you that there’s a missing bit of DNA but they may not be able to tell you if it matters and what it might mean to your child’s development and quality of life. Some parents may find this level of uncertainty overwhelming and unhelpful, but others may want as much information as they can access, even if it’s not always clear.
Q: Can you talk a little bit about the unequal access that people have to genetic counselors and what you would like to see happen?
A: With prenatal testing and genetic testing in general becoming more ubiquitous, genetic counselors are key to making sense of all the options. But they’re not always easy to find nor easy to afford. Genetic counselors are key to making sense of all the options. But they’re not always easy to find nor easy to afford. Genetic counselors work mostly at major medical centers, often in teaching hospitals, and less commonly in your average ob-gyns’s office. That’s largely because insurance providers may not always cover genetic counseling. The result is that a smorgasbord of tests are presented to pregnant women without enough context for them to be able to make well-informed choices about whether to say “yes to the test.”
Q: Do you see a world in the future where disabilities of our time will be eradicated? Is that good or bad?
A: When I worked at Time, I wrote an online article about noninvasive blood tests to detect Down syndrome in the first trimester. It was titled “Can a New Blood Test Make Babies with Down Syndrome Disappear?” In retrospect, not only did that title sound like an implausible circus trick, but it ignored the fact that a significant portion of the population doesn’t believe in abortion. Not everyone processes information in the same way. While some people would terminate a pregnancy due to a Down syndrome diagnosis, others would never consider it. So Down syndrome – and disability in general – will never completely disappear. But emerging techniques of gene editing hold a lot of promise to treat disease and address disability. That’s really the next frontier.
Q: You have three children. How will you counsel them if and when they are expecting?
A: In 2002, when I was pregnant with my oldest, a friend persuaded me to sign up for a nuchal translucency scan. At the time, it was the latest and greatest in tests available to predict a woman’s chance of having a baby with Down syndrome. Looking back, I pretty much said yes to any genetic testing I was offered. I realize that I agreed to do all these tests without really giving much thought to why I wanted to learn this information and, perhaps more importantly, what my husband and I would do if we didn’t get the reassurance we were hoping for.
I’ve thought about that experience a lot as I’ve written this book. If my kids decide to have kids (fingers crossed!), I’d advise them to be very deliberate about what sorts of testing they elect to do and very clear about why they want to do it. That said, I’d guess any grandchildren in my future would be a good two decades away. So much will change between now and then, meaning that any well-intentioned counsel on my part may be chalked up to their mom trying to relive her glory days.
Bonnie Rochman will be reading from and answering questions about her book at 4 p.m., Sunday, April 23, at Quail Ridge Books, North Hills, Lassiter Mill Road, Raleigh.