A few months ago, I corresponded with a man named John. He is the father of Grace, a young woman who has Down syndrome. Grace belongs to an ever-growing community of entrepreneurs with Down syndrome (Gracie’s Doggie Delights). In his message to me, he made the statement that the future is looking bright for his daughter, and that it will only be brighter for my son, Jude. Indeed, great strides have been made. I was very encouraged. But since then, I have begun to wonder if he was right.
Did you know that it is becoming easier for things like Down syndrome to be detected (with near certainty) through non-invasive prenatal testing? Did you know that 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 that 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 that they won’t actually be born with it? If it sounds like science fiction, that’s because it’s insane. Nonetheless, it may not be out of the realm of possibility.
One of the publications that 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 crazy that 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 replied to some of them (perhaps a bit passionately). I explained that my beloved son has Down syndrome and that we happen to like it. I explained that one of them was wrong to compare Down syndrome to cancer. I tried sharing stats about the positive impact that 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 that my son was a “genetic and familial dead end.” He also called him “defective”.
Obviously, I think that nice guy was wrong. But whether people were nice or mean about it, they came from a perspective that I fear far too many people share. It’s a perspective that 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.
If that’s true, then sure, edit that DNA.
But I think that perspective is mistaken. It assumes that 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 of the 21st chromosome. People with Down syndrome are truly unique. But the fact that it occurs because someone has that extra chromosome is an important thing to consider here. 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 that 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 John told me about, I fear it may not come to pass. After all, it’s clear that a lot of people seem to think they are better off if their kids don’t 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 that we’ve made won’t last.
Something that I was told more than once as I interacted with commenters was that it would be best for the child to not be born with Down syndrome because it would mean a better “quality of life”. That assertion seems to have little basis, though. While people with Down syndrome often do require some extra assistance with things like learning and physical milestones, how does one presume to quantify the quality of someone else’s life? Especially considering that the people living those lives are pretty happy with how things are going.
Although there is an obnoxiously overstated stereotype that people with Down syndrome are always “so happy,” there is a very interesting statistic out there. It turns out that some 97% of the people living with Down syndrome are indeed happy with their lives. That’s higher than any other demographic. And, statistically speaking, the families of people with Down syndrome are usually pretty healthy as well.
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 that gift continue to make our imperfect world a better place.
Just as God intended.
6 thoughts on “A Future Without Down Syndrome – Good Idea or Bad Idea?”
It is indeed a gift, and a blessing. Those who think otherwise have no idea what they are advocating for, and in truth are not thinking of anyone but themselves. I too an disappointed with the way these people think.
So well spoken ! our church family loves Jude because he is Jude with the sweetest personality .always smilling ,never seen him truly upset and never saw him on a fit 😇You see, we loved Adam and Nicole before Baby Jude and now the entire church (even youth and kids alike can’t get enough of baby Jude As a matter of fact 3 preteen boys spotted him in church dressed up so handsomely sitting by his mom ( while dad was at the front of the church and their response (WOW LOOK AT JUDE DOSENT HE LOOK SO CUTE ) now I have never before recalled tween boys saying that before Just maybe because they ,like the rest of our church doesn’t see a lil man with downs but a guy with HUGE smiles for everyone
Where will it end? A perfect society does not and will never exist. If a child is born ” perfect” then develops a serious illness ir disability would we have the right to kill it so it doesn’t taint our oh so perfect ideals ? A world with out Down’s syndrome?? ? NO thank you. Diversity is education. Long live the difference !!
No,no no. Everyone is an individual. A world without Down syndrome would be a lot less rich.
God does not make mistakes. Each of us is “handmade.”
13 For You formed my inward parts;
You covered me in my mother’s womb.
14 I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.
15 My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
16 Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them.
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This was a post I had on FB:
Not sure how to start this post but you know, sometimes the thought crosses my mind that maybe I am the one who is missing something and not that my child has an extra chromosome. When I see the joy she gets in greeting a friend or how it breaks her heart to see someone sad or hurting and all she wants is to comfort them. How each morning she wakes with a smile of reckless abandon. How the simple act of holding hands is enough to brighten the day. How she says thank you at the smallest of acts. Sure some physical things come slower, but loving trusting, forgiving, smiling come far more quickly to her than I. As a Christian, I think perhaps she is closer to Christ-like than I will ever be on this earth. So maybe it’s not so much she has an extra something, but the rest of us that have been missing it all along. Sure there are challenges that go along with it all, but I must say that the lessons and joy taught everyday far outweigh them.