Possible Treatment for Down Syndrome Raises Ethics Questions

Opinion   |   Effie Caldarola   |   Aug 30, 2011   |   1:01PM   |   Anchorage, AK

My nephew Ethan’s giggle is as contagious as any eight-year-old boy’s laughter can be. It’s unrestrained, beginning in his gut, spreading throughout his body and then overflowing into the house itself. Eventually the rooms echo not just with his glee but with the laughter of everybody around him.

There’s a hot new trend which uses laughter as therapy. If there’s any truth to that trend, then an evening spent with Ethan is a shot in the arm for mental health.

Ethan also has Down Syndrome. To deal with some of Ethan’s behavioral issues, his parents, my brother and his wife, are using that time-honored trick employed by countless parents before them: Ethan must accumulate stars on his behavior chart to be rewarded.

In Ethan’s case, the reward is a nightly game of Hide & Seek. If dinner guests happen to be present — say, for instance, me — the dinner guests participate as well. Don’t balk — if you’re a guest, you might consider it your giggle-therapy nightcap.

The rules say you can only hide in the upper level of the house. Only one game is played, until everyone has had one chance to be “it.” Ethan maneuvers to be the first one spotted, as then he accompanies the seeker as they find the rest of the players. There are only so many places to hide. No matter. It is just as hysterically funny to find Dad hiding behind the curtain in the breakfast room the tenth time as it was the first. And when Ethan erupts into laughter, no one can fail to see the extreme humor in the fact that a guest has put two sofa pillows in front of her face – possibly for the second time – and called that hiding. It’s side-splitting. Really. Ethan helps you rediscover humor.

There’s a New York Times article that raises questions about Ethan, other people with Down Syndrome, and ultimately, all of us.

Dr. Alberto Costa is a physician and neuroscientist whose only child has Down Syndrome. Costa has made it his life’s passion — and he may be nearing his goal — to find a drug which normalizes the growth and new brain cells in the hippocampus of people with Down’s. In layman’s terms, Costa thinks he’s on the verge of a drug that can significantly boost the I.Q. of people with Down Syndrome with early intervention.

Is this good? The idea raises questions on so many levels. Who would hesitate to immunize their child against disease, buy them the eyeglasses they need, or let’s face it, indulge the American desire for every child to have the perfectly aligned set of teeth? But to alter someone’s intelligence level with a drug? Does this suggest that there is something wrong, something diseased or misaligned, about the I.Q. with which we are born?

What next? Can we soon alter all of our children’s I.Q.s? Should we? And specifically, what about those kids with Down’s? If you continue to have all the other attributes of the syndrome, the possible heart problems or speech impairments, the physical distinctions, how does all of that fit in with an I.Q. level that’s in the “normal” range — whatever “normal” means?

I’m not asking these questions because I think I have answers. Not at all. I’m overwhelmed by questions.

The only answer I see is the one Ethan repeatedly shows me, which I think is part of Ethan’s mission and ministry: we are all beautiful, created in God’s varied and glorious image, and we should first of all love each other and ourselves for exactly who we are.

LifeNews.com Note:  Effie Caldarola is formerly a parishioner at St. Elizabeth Ann Seton Church in Anchorage. She now lives in Lincoln, Nebraska. This article originally appeared in the Catholic Anchor, the official newspaper of the Archdiocese of Anchorage, Alaska, and is reprinted with permission.