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09/16/2009

Will The Down syndrome Children Disappear?

This is the incredibly provocative question asked by a Children’s Hospital Boston researcher in a recent article published in Archives of Disease in Childhood.

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Given the new prenatal tests available to mothers, the author, Brian Skotko, asks, are we entering an era where slowly Down Syndrome babies will begin to be born in dwindling numbers? And is this, he asks something that we as a society would even want to happen?

As covered in the Washington Post, Skotko provides some interesting data: “in the USA, there would have been a 34% increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15% fewer babies born [with DS], representing a 49% decrease between the expected and observed rates.”

This difference between what is expected and observed is not likely to change, but only increase when some 92% of women who know their fetus has Down syndrome choose abortion. And as testing becomes more sophisticated and more reliable, this number may increase as more women know even sooner and may choose this option given more time to choose it.

But what will our society lose if all the Down syndrome children disappear? There will certainly be a thread of our humanity that would be lost. Moreover, I doubt that there will ever be a time when Down syndrome is ever completely gone from our population. 100% of women will never terminate their Down syndrome pregnancies–nor should they. Their is a richness and fullness that raising a handicapped child brings to parents’ lives and for some parents that is what they wish to have.

So will the Down syndrome children disappear? No. But will they dwindle in number? Yes, due to advances in prenatal screening and genetics and parental choice. And yes, we will lose something for having fewer Down syndrome children and adults among us.

Summer Johnson, PhD

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