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An Extra Chromosome Isn’t the Problem. The Real Down Syndrome ‘Problem’

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When Karen Gaffney’s mother found out she would be born with Down syndrome, the doctor said Karen probably would not be able to tie her own shoes. Instead, as Karen explained in a moving and eloquent TEDx talk, she has become an accomplished open-water swimmer who has crossed the English Channel in a relay race and completed the swimming leg of the Escape from Alcatraz triathlon.

Now she fears the result of a new race — the one to “find newer, faster ways” to screen for Down syndrome so that more children with the disability can be killed in the womb.

Her fears are well-founded. CBS News recently reported that Iceland was on the verge of “eliminating” Down syndrome. Unfortunately, there was no great medical breakthrough to report. Iceland, it turns out, is not eliminating Down syndrome; it is eliminating people with Down syndrome. The country’s abortion rate for Down syndrome babies is close to 100 percent — the highest in the world. Denmark is close behind at 98 percent. In the United States, it is 67 percent — and Karen fears the rates here will soon reach European levels.

An Iceland geneticist says “we have basically eradicated” Down syndrome people, but regrets what he considers “heavy-handed genetic counseling” that is influencing “decisions that are not medical, in a way.” One Icelandic counselor “counsels” mothers as follows: “This is your life. You have the right to choose how your life will look like.” She says, “We don’t look at abortion as a murder. We look at it as a thing that we ended.”

 

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