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What if you knew your baby would be born with defects?

1/20/2016

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The best way to understand the value of someone who has what the world considers a disability is to listen to his or her parents.

Yvonne Pierre, a woman who overcame many of her own obstacles to obtain a higher education and to author books, has said about her son with Downs Syndrome, “My outlook on life has forever changed. I see my own challenges differently. He's always showing me that life is so much bigger than self.”

The question is, will the world welcome this kind of wisdom in the future if it doesn’t have to confront the challenge?

Writing in Britain’s The Telegraph, columnist Tim Stanley reports that 90 percent of the mothers in Britain who learn, through a simple blood test, that their unborn child has Down’s Syndrome elect to abort the child.
A Danish newspaper blithely reported last year, “The number of children born with Down Syndrome (DS) in Denmark has fallen drastically in recent years – so much so that the disorder could be a thing of the past in 30 years.”

Would that make society better? By what measurement?

This isn’t an issue confined to Down’s Syndrome. The more science can tell us about the genetic makeup of our unborn children, the more choices people will have to make about what constitutes normal, and whether only the people who meet that definition should enter the world.

And that decision can go in some awful directions. In some cultures, the tradition of valuing boys above girls has led parents to abort baby girls. As The Economist reported in 2010, some Chinese provinces have a ratio of 130 boys to 100 girls, which will play out in catastrophic ways as that generation ages.

Professor Stephen Hawking made news recently when he said science and technology could be the eventual undoing of the world. Hawking has a talent for being provocative. He was referring to things such as nuclear war, genetically engineered viruses and global warming. And although he said he is an optimist (“We are not going to stop making progress, or reverse it, so we have to recognize the dangers and control them,” the BBC quoted him saying), he clearly believes things will get out of control eventually.

But while Hawking didn’t say it, the secret to controlling this inevitable clash of discovery and civilization is the moral and ethical training to temper technology with a deeper understanding of humanity and its ennobling worth. That won’t come from a science book.

Hawking is recognized as having one of the keenest minds in modern science. He also has a debilitating motor neurone disease. What if a DNA test had been available to determine in utero that he would be susceptible to that disease?

The Telegraph story was published about the same time this month as a report from WFAA-TV in Dallas about Blake Pyron, a 19-year-old resident of Sanger, Texas, who has become the youngest business owner in town, having just opened a snow cone shack. He also has Down’s Syndrome.

His parents told the station they remember doctors not giving them much hope for the future when Blake was born.

“But we had faith,” the mother said. Faith is that ability to see potential where others see only problems.

It’s important to temper these disturbing trends with some facts. The website gutmacher.org reports that abortions are on the decline in the United States, down to near the level of 1973, when the Supreme Court made them legal.
But this fact alone doesn’t make the ethical decisions of the future any less real.

Are we, as Stanley wrote in the Telegraph, becoming a society “increasingly obsessed with making life as perfect as possible …”?  Do we believe “life isn’t truly valuable unless it is healthy, pain free and contributing to (the) gross national product”?
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Can we see beauty and potential in all human beings? The answer to that one may have more to do with our future than any of the scientific advances of which Hawking is warning us.
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    The author

    Jay Evensen is the Senior Editorial Columnist of the Deseret News. He has nearly 40 years experience as a reporter, editor and editorial writer in Oklahoma, New York City, Las Vegas and Salt Lake City. He also has been an adjunct journalism professor at Brigham Young and Weber State universities.

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