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BETSY HART: New ground in fetal testing

by on April 14, 2013 1:20 AM

It’s rare that a chill runs up my spine anymore when reading a news story. I’ve lived in the world long enough to know it’s full of shootings and unthinkable scandals and people hurting each other in countless ways, so I’m not easily shocked.

Still, when I read this I went cold: “They (medical specialists) worry that in the worst-case scenario, inaccurate test results could contribute to the abortion of healthy babies.”

I gasped. The sentence came from a recent story in The Wall Street Journal by Christopher Weaver. The headline: “Tough Calls on Prenatal Tests: Companies Race to Promote New Genetic Screen for Down Syndrome; Worries about Patient Confusion.”

As any expectant mother in the U.S. knows, after a certain age, when one’s risk is higher for having a baby with Down syndrome, a woman is pushed — hard — to have invasive testing for the genetic mutation. And studies have shown that most women who find that they are carrying a baby with Down syndrome do abort, though estimates on the exact numbers vary.

But the invasive tests, such as amniocentesis, carry a risk of causing a miscarriage, so the hunt has long been on to find a highly accurate test that itself does not pose a risk. New tests seeking to do just that were the subject of the Journal piece. These tests are changing the landscape of prenatal testing, and I’ve written about this phenomenon before.

I know, I know. It’s easy for a woman with healthy children, as I do, to say that one shouldn’t terminate a pregnancy involving a disabled child. But I’ll say it anyway. And not because, for starters, I’m told by parents of disabled children how challenging — but also how wonderful — life can be with such children.

Instead, I’ll start with the obvious truth that none of us knows what life will bring. One can abort a baby with Down syndrome but then later have a healthy one who dies a few decades later — as my friends’ son recently did, of a rare cancer. One can stack the odds in all the right ways, yet find out later that that healthy child has a mental illness, as more than one friend has experienced. Or one can raise four children with a loved husband one day and literally find oneself raising a family of young children alone the next day — as I know firsthand.

Life is full of uncertainty, and to think we can change that is pure foolishness. To think we benefit by changing it if in the process we extinguish innocent human life itself is much worse.

In any event, that particular sentence in the Journal article — that sentiment and the entire context of it — jumped out at me and made me want to address this issue again. The “worst-case” scenario is aborting a healthy baby? So then, aborting a targeted baby with Down syndrome is ... what? A good return on the investment?

Someday, unless carried off by a quick death, every one of us will, because of illness, age or injury, experience some level of diminishment, physically and/or mentally. Perhaps severely so. Does that make us less deserving of life?

I marvel at how we live in a politically correct culture in which we are terrified of offending anyone. Yet the view that medical specialists “worry that in the worst-case scenario, inaccurate test results could contribute to the abortion of healthy babies,” with the clear implication that when it results in the abortion of an unhealthy baby there are no such concerns, is shocking. Or at least it should be.

The rest of the Journal piece discusses the state of the new technologies and efforts at sorting out the confusion attached to them. But the point is that developing the best noninvasive prenatal testing for Down syndrome (and other such conditions) is a new Holy Grail in certain circles. And as Jonathan Sheena, chief technology officer at Natera, a company that produces such technology, told Weaver, “The field has taken a giant leap forward.”

If that sentiment is widely shared, then I think the rest of us have taken a giant leap backward.

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