A perfect joy: A child with Down's syndrome

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Article Ethic of Life
Are our ethics keeping pace with the current genetic revolution?

Fifty years ago, when geneticist James Watson and physicist Francis Crick uncovered the structure of DNA, they proudly declared, “We have found the secret of life.” Thus began the race to map the genetic code that determines who we are, what we look like, how long we’ll live, and what’s in store for our children and grandchildren. As that mapping is virtually completed today, we find ourselves in the discomfiting and morally perilous position of having our ethics outpaced by our research.

Sure where you stand on abortion, cloning, and in vitro fertilization? What about preembryonics, stem-cell research, gene therapy, and germ-line genetic engineering? Today the whole world is trying to get its bearings on these issues, and Catholics, too, must consider how to address faithfully, compassionately, and intelligently the life-altering changes coming our way.

Couples will soon be able to choose not only their children’s hair and eye color but their intelligence and talents as well. Even more significant, scientists will be able to screen out or fix disease-carrying genes, so that the heartbreak of Tay-Sachs or Huntington’s would be no more. Read the brochures from any genetic research or reproductive institute, and it all sounds like a slice of heaven within our grasp.

But the steps to that magical point are slippery and sloped. Our past concerns with where human life begins seem almost quaint when confronted with the question: “What is human life?” now that animals are being bred with human cells. Even more ominous: Who decides what beings are created, and who lives or dies? That used to be God’s realm; now it falls within the purview of any number of scrupulous and unscrupulous scientists, governments, biochemical conglomerates, insurance companies, and families. Sex selection and ethnic cleansing are already a cruel reality. Whom will we lose in future genetic purges?

I thank God my daughter, Hannah, was born in 2000, because by 2050 I am not sure her life would have been spared. Hannah has Down’s syndrome, a genetic disorder that is easily detected at the first cell division. We discovered her diagnosis after a routine prenatal ultrasound revealed a heart defect common in babies with trisomy 21, or Down’s syndrome. From that moment on, Hannah’s life became expendable in the eyes of many in the medical community.

“The hole in your baby’s heart will be difficult to repair, and she may have chromosomal defects. I would terminate the pregnancy,” advised one doctor. Once an amniocentesis confirmed the diagnosis, another doctor warned us that keeping the child would put a tremendous strain on our marriage. And the geneticist cheerfully informed us, “You can still go to Kansas. They allow late-term abortions there.”

My husband, a Bosnian Muslim, and I were very clear that we would play the hand we were dealt. The day we got the news my husband told me, “We can’t fight God.” With the sanctity of human life strongly defended in both our faith traditions, we were morally prepared for this moment. If we hadn’t been so rooted in this belief, I doubt we could have withstood the pressure. Our physicians were well-meaning but followed a skewed medical ethic that tilts in favor of a “Let’s do it over till we get it right” attitude that is becoming increasingly common.

Now more than ever I feel tremendous compassion for parents who fear they wouldn’t be able to handle bringing a child with genetic defects into the world, but I also want them to know that the picture of what they and their child will face is often painted much bleaker than it need be. Hannah’s miraculous open-heart surgery went without a hitch, and she is flourishing and delighting the world the way any 2-year-old does. (It’s part of the irony of modern medicine that with each step it brings us closer to self-destruction, it takes a parallel step toward improving our chances of survival.)

It is always disappointing—and often frightening and overwhelming—to learn that your child will be less than perfect. All parents face that inevitable reality. Some of us just learn it at a time when we naively think we can do something about it. In truth, even with every gene perfectly in place, we cannot guarantee our children long and happy lives. So let’s hope all of us swept up in the current genetic revolution feel the tug of wisdom and humility among the other pulls and pressures as the secret of life continues to be revealed to us.

This article appeared in the June 2003 issue of U.S. Catholic (Vol. 68, No. 6, page 50).