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.
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.
Of course, I want a healthy baby. But when discussing these medical advances, more often than not, conversations begin through an ableist lens. Most articles I read are from an able-bodied perspective. These articles assume that someone with Down Syndrome would be better off without the extra chromosome. Instead of a nuanced conversation looking at how disability is (or in most cases isn’t) integrated in our society, with gene editing, we look to fix or erase disabilities instead.
While gene editing will be revolutionary for the treatment of some truly terrible diseases, we are failing those who don’t believe their disabilities need fixing. We are deciding that we want to create people who fit into our able-bodied world.
I have no idea what our decision will be.
One factor will be the severity of any potential disability and quality of life. I’ve worked with adults with developmental disabilities. I’ve seen how our society treats them at our best and worst. I’m struggling a great deal to reconcile all of this. At what point are we selecting children based on convenience and prejudice because we don’t understand the culture and beauty of experiences different than our own?
Another reader reflects on what her child has taught her about this subject:
Who wouldn’t want to ensure their children are the healthiest possible? Then there’s the slippery slope to also wanting the smartest, most athletic, prettiest, tallest, most likely to win an Olympic medal.
My daughter has won Olympic medals––Special Olympic medals, to be precise. The deletion in her genome is tiny but spectacular. It decides all parts of her life. She is the most outgoing, enthusiastic, friendly person you’ll ever meet. If, before she was born, someone had told me she would be born with a rare genetic disorder, would I have wanted it “fixed”? The problem now is that I’ve met my daughter. I wouldn’t change a thing.
But that’s now.
I didn’t choose to have prenatal testing done, other than the standard 20-week ultrasound. Cost wasn’t a factor. I just knew that I wouldn’t terminate a pregnancy based on those test results, so what was the point?
Society has always evolved to follow science and human capabilities. I imagine this will be the same. As someone who spends time with the neurologically atypical, the loss of people with disabilities in our communities is not something to cheer. Everyone has value, but we won’t know the gifts they will offer until they are actually born and live among us.
The final reader in this item reflects on faith and the rearing of children with serious medical problems:
I am the step-father of two children with cystic fibrosis. Some of my other children have asthma issues. It would be so simple to just “cut and paste” and then we wouldn’t have doctor/hospital visits all the time. But at the same time, I am reminded that the Bible says, “let us make man in our image.” Even as tarnished as that image may be, I have to believe that God has allowed illness for His glory.
I cannot fault parents for trying to seek out medical options to save their children. I watched the documentary Twice Born and wept in fascination that some babies might be able to be treated. One of my children takes more than 10 medications daily and he may not live much past 20. I consider the medicines and tools that are available to me a gift from God and have no qualms about thanking Him for them.
But at what point does medical treatment become redesigning a human being? If we can breed animals for harvest, why not genetically engineer some children so that we can harvest their limbs and organs for wealthy people that are ill?
Have you ever seen a movie called Gattaca? Interestingly enough it discusses children conceived naturally versus genetically altered children and genetic discrimination as a result of that editing. It’s something that I would consider prophetic in the same sense I consider Fahrenheit 451 to be prophetic—a frightening indicator of things to come.
What, or who, are we actually fighting with these technologies? Perhaps I should spend less time being concerned and more time praying.