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How Much Should You Get to Decide About Your Baby's Genes?

Doctors are making judgment calls about what information to give expecting parents and what to withhold.
Image: Ian Cuming/Getty

The list of diseases and disorders for which it's possible to screen embryos continues to grow. But should we all be jumping at the chance to sequence the genome of our unborn children? Or lining up at the IVF clinic to screen our embryos for abnormalities before having them implanted? Where's the line between reducing disease risk and creating designer babies? Should couples test themselves before trying to get pregnant to ensure they are not both carriers of certain diseases?


What it boils down to is that as a society, we have to decide how much genetic information about our kids (or potential kids) we should have access to, and what actions are available to take based on that information.

Debut nonfiction author Bonnie Rochman beautifully weaves real-life scenarios and expert interviews with scientific data and historical context to examine these and other issues in The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids. I recently spoke with Rochman about the new book, which comes out this week.

What made you want to write this book?
I was a health and parenting columnist at Time magazine. In 2012, I wrote a big cover story on sequencing children's genomes. Once I was done I just had this insatiable need for knowledge about genetics. The middle space is what interested me. It's not black and white; it's not just about genetics, it's about ethics. Where are the red lines drawn? Who gets to decide that?

How much genetic information do you think prospective parents should have access to?
I think every test should be offered to pregnant women. Right now there is a big issue with access, with people in bigger cities being offered tests and in other areas, not so much.

There's also a lot more that needs to be done in terms of educating women before testing. Because these tests aren't always giving a diagnosis, just showing an increased risk or a need for further testing. Only once they have a clear understanding of what the test can reveal can they make an informed decision as to whether or not to pursue the test.


It's disingenuous not to include abortion in conversations about prenatal testing, but when you're being offered these tests at your doctor's office, you're not going to hear the big A-word. So many women I spoke to—especially first-time moms—said they didn't know exactly what they were signing up for. People should be asked if the results would change the course of their pregnancy. A disorder that is a non-starter for some may be no big deal for others.

How did you handle the fact that some of your interview subjects' opinions may be perceived as ableist?
I tried really hard to present lots of different opinions about the perception of disability in society. So if I interviewed an expert with a harsh opinion, I'd counterbalance that with the story of a person with a disability. Stories are worth so much more than talking heads. Saying that there are some disorders we should fix if we could is not the same as saying that the people in the world with disabilities don't deserve respect and to be empowered.

Is there such a thing as knowing too much?
For some people, there is such a thing as too much information, for others, there's not. It's very hard to develop guidelines around this because it's all so individual. The issue is that our ability to deploy genetic technology has far outpaced our understanding of what the results mean. We're constantly learning more about which genes are associated with which diseases, but these tests still come up with a lot of variations that we have no idea if they are connected to disease or not.


What was the most surprising thing you learned while doing research for the book?
It was news to me that you don't always get all of your test results; that doctors are making judgment calls as to what information to give patients and what to withhold. In the book, I give this example of testing a baby and finding out he's at risk of early-onset dementia. The doctors went back and forth about whether or not to share this information with the parents. They were worried they may be causing a lot of needless anxiety—but what if it was treatable?

How much control does this technology really give parents?
You can test for all these things, sure, but there are a million other things that can go wrong after birth; you can't control everything.

What do you hope people take away from reading the book?
I don't give answers in this book; this is not a "What to Expect When You're Expecting" for genetics. It's more of a road map that offers a lot of potential routes. There's a lot of unpacking to do. I hope it makes people start asking more questions: about having babies, about how we feel about disability and disease, about where to draw those red lines.

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