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

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.

Two week ago, I asked readers, “Will Editing Your Baby’s Genes Be Mandatory?” That is to say, parents are sometimes charged with crimes when religious beliefs cause them to deny their child lifesaving antibiotics, or an appendectomy, or a blood transfusion. In the future, if and when editing a baby’s genes can prevent an awful disease, the inevitable parents who reject the technology may be similarly punished.

Should that happen?

Scores of The Atlantic’s readers offered thoughtful responses that are helpful for thinking through aspects of biotechnology that will raise ethical dilemmas in future years. Their letters illustrate the diversity of viewpoints society will confront on this issue. Over the next week, I’ll be publishing a selection of correspondence, beginning with readers who have personal connections to the issue.

We begin with a cancer survivor and carrier of Lynch Syndrome, an inherited condition that increases the risk of colon cancer. Each of her children has a 50 percent chance of inheriting the mutation; neither has been tested to see if they do, in fact, carry it.

She writes:

While some may fuss and fret about the ethics of gene editing and so-called designer babies, should either of my sons carry the Lynch mutation, I would not only urge them to use gene editing for their offspring, but I would pay for it myself—as I would for IVF, the current recommendation for hereditary cancer carriers of childbearing age.

The cost of cancer and other diseases is huge—not only monetarily, for individuals and the nation, but also psychologically. Cancer is challenging for even the strongest among us, surrounded by loving care. When one adds in uncertain health insurance and the reality of life insurance discrimination, the ability to root out the cause of disease at the genetic level is not only tempting, but humane, intelligent and compassionate.

But would I force gene editing upon my sons? I would not. And do I believe those who make a different choice should be punished? Using the examples of devout Christian Scientists, I do not. Having been through cancer, I know that prayer is a useful and healthy adjunct to medical care—and if someone has different beliefs, while I may not agree, I cannot condone the state stepping in to punish them in a time of tragedy.

I can encourage my sons to make certain choices, but I can’t force them. And while I wholeheartedly support science and the work being done around gene editing, I can’t force anyone to avail themselves of these therapies—and neither should the government.

This next reader is about to attend a genetic-counseling session with her partner:

We will be finding out about the option of testing fertilized embryos and selecting “healthy” ones to implant. My partner is a carrier of a very rare genetic disorder and has bilateral hearing loss caused by this syndrome. Due to this, he is hard of hearing and uses hearing aids. He also faces the possibility of becoming profoundly deaf later in life.

While we don’t have the ability to edit genes, we could select an embryo that doesn’t have this disorder or will likely be carrier but non-symptomatic. Without this intervention, there is a possibility our child will be deaf or suffer hearing loss.

I keep typing “healthy” in quotation marks because the assumption is that I would want a hearing child … that a deaf child or the possibility of having a deaf child is less than ideal, that being deaf is a problem, something to be managed or fixed and ultimately bad. Isn’t that what we are saying when talking about healthy babies?

Healthy and whole versus unhealthy and broken.

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