In The Gene Machine, Seattle-based science and parenting reporter Bonnie Rochman explores how rapidly emerging technologies shape modern childbearing — from the tests we request (or don’t know to request) before and during pregnancy to the complex bioethical issues arising along with our access to ever-expanding spools of genetic data. We spoke with her to get the details about her book and what we need to know about these options.
Why did you want to write this book?
When I was pregnant with my oldest, who is now 14, I tried to get a carrier screening for genetic diseases. I was living in the South at the time, and my doctor told me I just needed to be screened for one, Tay-Sachs disease, because of my Jewish ancestry. But at the time, I knew that Jewish women in New York were being screened for nine or 10 diseases. I was surprised that where you live in the U.S. can dictate what sort of genetic tests you’re offered. That didn’t seem to be a good way to go about public health.
As a parenting reporter and one of the earliest parenting bloggers for Time Magazine’s website, I’ve always been interested in the intersection between parenting and health. I did a series for Time on sequencing kids’ genomes in 2012, and it was quite popular. When you spend that much time on a project, you either never want to spend another minute on the topic or you want to find out more. For me it was the latter, so this book was born.
Your book explores the questions surrounding the creation of 'designer' babies. What are some of the moral and ethical issues surrounding our ever-increasing access to technology?
We live in a time when life has never been better for people with chronic disease or disability. At the same time, we have an unprecedented ability to detect these illnesses early in pregnancy. For example: As of 2011, non-invasive prenatal screening can tell you in your first trimester whether you’re carrying a baby with Down syndrome (DS), early enough to potentially terminate the pregnancy.
But life has never been better for people with DS in terms of health outcomes, treatments and society’s acceptance. It’s a good time to have DS, and DS advocates say these tests are just a fast track to abortion, and wonder what this means for the future of DS. The same is true for conditions like spina bifida. We have to ask ourselves, how much information do we really want? And when we get these tests, are we prepared for what we might find out?
Are women and their partners getting adequate information about these tests and the information they reveal?
The typical OB practice is extremely busy, and providers don’t have time to explain these tests, let alone their results. Doctors generally don’t receive much genetics training beyond a course in medical school, but they often don’t have the latest information on the tests available. A genetic counselor is a women’s best friend, but whether a women can access one depends on where she lives and her insurance plan, among other things. Women need to have their eyes wide open and ask questions. They need to be their own advocates.
What do you hope prospective parents will take from your book?
Together with their partners, women should ponder why they want genetic tests along with how they’ll cope if the results aren’t what they hope. And understand that sometimes, genetic tests provide more questions than answers. You don’t always get complete clarity.
When you’re deciding on testing, you should understand your own tolerance for risk. And if you’re someone who doesn’t like surprises, like me, I definitely recommend testing, so you’re not distraught on your child’s birthday. Knowing ahead of time can empower you to make better choices for your baby.