Newborn Genome Sequencing- Would You Want To Know If You Could?

The day Leyna was born, just hours after she was placed in our arms, Scott’s 32-year-old cousin died from complications related to cystic fibrosis. Andy was a fighter, referred to as Superman by the family. He’d endured transplants, treatments, and multiple drugs to beat down the beast that was the disease he had since birth, a disease that is genetic. As far as cystic fibrosis is concerned, he lived a long life, but when you remove the disease from the equation, it was entirely too short.

Scott and I have never been tested to see if we carry the gene that could put our children at risk for CF, but both of the children have been tested at birth for it as part of their newborn screening done in the hospital. You can read more about it here. I’ve never second guessed the importance of having that done. If our baby has CF, we would need to know as soon as possible.

It’s also helped ease my mind. There was a point when Kendall got sick and displayed some symptoms that are related to CF, which really made my anxiety rise. After I remembered he’d been tested early on for that, and after talking with his pediatrician, I felt much more at ease. Turns out he was just having some typical toddler digestive issues.

The Newborn Screening only screens for about 50 health conditions, but advances in technology are making it easier for parents to find out much, much more about their baby’s genetic makeup at birth.

Bonnie Rochman is publishing a 5 part series on Time.com all about the pros and cons of so much information made available to new parents, and I find it fascinating.

 Genetic tests have been around for years, but in 2003 scientists took the field a step further, announcing the first complete mapping of a human genome — an entire genetic code. Sequencing, or “reading,” a person’s genome is one of the newest, most controversial tools in the medical arsenal because of the mother lode of information it contains about future disease risk. Genetic markers for heart disease or cancer may spur consumers toward healthier behavior. But when it comes to conditions such as Alzheimer’s and Parkinson’s that can’t be prevented, many experts are divided on whether knowing is helpful or harmful. -
“Test Your DNA For Diseases – No Doctor Required,” Time.com 

Honestly, I’m torn. Would this be something I’d want to know? How would this benefit us, specifically my children? Maybe even more important of a question- how would this hurt us?

Sometimes just because a person carries a gene for something, doesn’t mean they will be affected by it. That said, environmental factors plus that gene can make it more likely they will. So then I could at least try to control the environmental factors, right?

But then I just picture me putting my baby in a bubble and taking xanax for the rest of my life. I can’t imagine how this kind of information could affect postpartum mental health.

On the other hand, though, if I can know ahead of time that my kid will likely develop a disease, I can educate myself. I can be proactive. Is it irresponsible not to find out if you have the information available to you?

I don’t have answers to any of those questions. Just more questions.

How do you feel? If at birth you could have your child’s genetic makeup tested for everything under the sun, would you? And then what would you do with that? What if you found out they carry the gene for something that can’t be cured or prevented?

Maybe an even bigger question- when and how do you pass that information on to your child?

To read the Time.com series on kids and genetic testing, check out:

Will My Son Develop Cancer? The Promise (And Pitfalls) Of Sequencing Children’s Genomes (Part 1)

Test Your DNA For Diseases- No Doctor Required (Part 2)

The Trouble With My Daughter’s DNA (Part 3)

And follow Bonnie Rochman (on Time.com and on Twitter) to see when she publishes the last 2 posts in the series, each looking at the topic from a different perspective.

 

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