A Parent’s and Child’s Perspective on the Gene-Editing Debate

Editor’s Note: This article previously appeared in a different format as part of The Atlantic’s Notes section, retired in 2021.

We’ve heard already from a few parents whose children have, or may carry, genetic disorders. This reader’s son suffers from Tourette syndrome, ADHD, and OCD, all severe:

He is a brave and strong-willed young man, and he has chosen to live and manage his issues without medication. He describes the pain, frustration and embarrassment that he lives with; he has endured chronic pain for nearly 10 years due to his severe, seizure-like tics. Tourette syndrome is an inherited disorder. Some 99 percent of males and 75 percent of females carrying the genes for TS will display symptoms. This means that my son will have to confront the possibility that his children will inherit this painful and misunderstood disorder.

He has already declared that he will not have children; he does not want to inflict what he has endured on an innocent child. That’s his decision to make, and, who knows? With the passage of time and improved treatments, perhaps he will change his mind.

But how does it feel to know that society sees you as defective, as a problem to be repaired or edited out? How does he see himself? His voice is the one you need to hear.

He writes:

I like gene editing, and I think that it should be mandatory or at least strongly encouraged when it gets functional on a wider scale.

I think that it’s unethical to allow a child to be born with disabilities when you could avoid it, since it’s basically sentencing someone to a life with chronic pain. In the same way, I believe it is wrong to deny a child a cochlear implant out of a desire for them to embrace deaf culture more.  Disabilities suck.

You wouldn’t cut off someone’s leg or stab someone carefully in the brain to damage it, so why would you intentionally have a kid with no legs or a brain that doesn’t work right?

His mother adds:

My husband also told me that our son wishes that we had terminated my pregnancy with him when we were offered the option. My husband was quick to explain to him that the ultrasound anomalies have no correlation at all with Tourette syndrome—but this just breaks my heart.

He’s in a lot of pain, and I wish he would relent and investigate the current state of research on cannabidiol, which looks as if it could do him a world of good. Being in so much pain for so long must be difficult. I hope that a safe, legal remedy is available, and soon. But that’s another debate, isn’t it?

But while I as a parent would do whatever I could to cure Tourette’s, I in no way see it as a disability that warrants abortion. As I’ve told him, for many years, we all have our own baggage, and many people, myself included, live full, active lives with chronic health problems and worse. I hope that he is able to recognize how strong and resilient he is.

If you are living with Tourette’s or another disability and have thoughts to contribute on the gene-editing debate, write us at hello@theatlantic.com and we’ll update this post.