The Mighty Logo

A Future Without Down Syndrome?

The most helpful emails in health
Browse our free newsletters

A few months ago, I corresponded with the father of a young woman who has Down syndrome. His daughter is the co-owner of a successful small business. In his message to me, he made the statement that the future is looking bright for his daughter, and it will only be brighter for my son who also has Down syndrome. Indeed, great strides have been made. I was very encouraged. But since then, I have begun to wonder if he was right about that.

Did you now it is becoming easier for things like Down syndrome to be detected (with near certainty) through non-invasive prenatal testing? Did you know the majority of children who are diagnosed with Down syndrome will be aborted (internationally speaking)? Did you know that this type of selective abortion has virtually eliminated babies born with Down syndrome in some countries?

Did you know it may be possible to genetically edit babies who are diagnosed with Down syndrome in the future? That it may one day (soon) be possible to change a baby’s DNA so they won’t actually be born with Down syndrome? If it sounds like science fiction, that’s because it feels so far reached. Nonetheless, it may not be out of the realm of possibility.

One of the publications I follow on Facebook recently shared an article about that very possibility and posed a question, “Suppose you are pregnant. A genetic test reveals your child has Down syndrome, and you are offered the option to undo the genetic mutation. Would you?”

What do you think? Would you edit your child? Regardless of how close science is to allowing us to alter DNA, do you think the world would be a better place if people with Down syndrome no longer existed?

I went to the comments section of that post hopeful. Surely, everyone knows how outlandish it sounds. Indeed, how horrible the thought. But once again, hope in humanity was misplaced. The people spoke, and many of them responded with a resounding, “Yes, I would absolutely edit my child!”

But I wasn’t ready to give up on the people just yet. Perhaps they just hadn’t thought it all through. So I engaged with some of them (perhaps a bit passionately). I explained my beloved son has Down syndrome and we happen to like it. I explained one of them was wrong to compare Down syndrome to cancer. I tried sharing stats about the positive impact people with Down syndrome tend to have on their families. Ultimately, it seems I got nowhere with the people who decided to respond to me. In fact, one guy told me my son was a “genetic and familial dead end.” He also called him “defective.”

Obviously, I think the guy was wrong. But whether people were nice or mean about it, they came from a perspective I fear far too many people share. It’s a perspective I have even heard from people who share my Christian worldview. It goes something like this, “Down syndrome is a flaw that would not exist in a perfect world.”

Now, if that’s true, then sure, edit that DNA.

But I think that perspective is mistaken. It assumes Down syndrome is a problem to be solved. A defect to be fixed. I don’t believe that is true.

Now, genetically speaking, I see why people are tempted to call it a flaw. People don’t typically have 3 copies of the 21st chromosome. People with Down syndrome are truly unique. But the fact it occurs because someone has that extra chromosome is an important thing to consider. They have that chromosome from the very beginning of their development. It is literally always part of them. To remove it would be to destroy part of their body. A fundamental part of them would be lost.

We love our son. And it’s not as if we love him even though he has Down syndrome. No, we would miss the extra chromosome if he were to wake up tomorrow without it. It’s part of what makes him who he is. The idea that so many in our world seem to view people like him negatively saddens me. And as I think about the bright future that father told me about, I fear it may not come to pass. After all, it’s clear a lot of people seem to think the world is better off without people who have Down syndrome. It’s also clear that many well-intentioned people see those with Down syndrome as in need of fixing. Perhaps the great strides we’ve made won’t last.

Something I was told more than once as I interacted with people in the comments section was that it would be best for the child to not be born with Down syndrome. They would have a better “quality of life” without it. That assertion seems to have little basis, though. While people with Down syndrome often do require some extra help with things like learning and physical milestones, how does one presume to quantify the quality of someone else’s life? Especially considering the people living those lives are pretty happy with how things are going.

Although there is that obnoxiously overstated stereotype that people with Down syndrome are always “so happy,” there is a very interesting statistic I recently read. It turns out that  97 percent of people with Down syndrome are indeed happy with their lives.[6]

That’s higher than any other demographic. And, statistically speaking, the families of people with Down syndrome are usually pretty healthy as well.[7]

By the numbers, life is perhaps arguably better when someone has Down syndrome. And that better life extends beyond the individual. Families are better off. Schools are better off. Communities are better off. The world is better off with people who have Down syndrome. To jettison that community from our world would not be progress. Trisomy 21 is not a disease to be eradicated. It’s a gift that, as of now, occurs in approximately 1 in every 700 births in America. Please join me in advocating for a future where people with Down syndrome continue to make our world a better place. Just as I believe God intended.

Follow this journey at Adam’s Notepad

We want to hear your story. Become a Mighty contributor here.

Originally published: April 28, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home