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Will Babies with Down Syndrome Just Disappear?

The development of prenatal diagnostic technologies presents a constellation of moral issues -- with the diagnosis of Down syndrome front and center. Over the past several years, a marked decrease in the number of babies born with Down syndrome has been both observed and widely reported. This decrease can be traced directly to the decision to abort after prenatal diagnosis.

As Science Daily reports, a new leading article to be published in Archives of Disease in Childhood points to developments in the near future that will likely increase the diagnosis of Down syndrome [DS] during pregnancy. "New tests expected to be introduced next year will offer a simple blood test that poses no risk to the fetus and delivers a definitive diagnosis of one of more of the genetic variants of Down syndrome -- trisomy 21, translocation, or mosaicism," the journal reported.

The development of these new tests will almost surely make the practice of prenatal screening for Down syndrome more widespread. At present, the available tests pose some risk to the fetus and are invasive. The new tests expected next year are based on simple blood tests.

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The new research is based on work by Dr. Brian Skotko, a clinical genetics fellow at Children's Hospital Boston. Skotko, who has a sister with Down syndrome, asks this haunting question: "As new tests become available, will babies with Down syndrome slowly disappear?"

His research reveals deeply troubling trends. Between 1989 and 2005, births of babies with Down syndrome decreased by 15 percent. As Science Daily explains, "In the absence of prenatal testing, researchers would have expected the opposite -- a 34 percent increase in births -- due to the trend of women waiting longer to have children; known to increase the chances of having a baby with Down syndrome."

In an article published in 2005, Skotko argued that doctors are often ill-prepared to discuss the diagnosis of Down syndrome with their pregnant patients. Chillingly, he also revealed that a significant percentage of the doctors "reported that they 'emphasize' the negative aspects of DS so that patients would favor a termination."

With the new technologies of prenatal diagnosis so close on the horizon, Skotko now sees a "true collision" on its way. "More women will be going through the testing process, which could lead to a lot of difficult, uncomfortable conversations between physicians and expectant patients."

The reason for the decrease in the number of babies born with Down syndrome comes into clearer focus when The Washington Post cites Skotko's research indicating that 92 percent of women who learn they are carrying a baby with Down syndrome choose to abort the pregnancy. That is more than nine out of ten.

The dimensions of the "collision" Dr. Skotko sees coming now come into view. If these percentages hold, the development of these new tests will almost certainly lead to a vast increase in the number of babies aborted after the diagnosis of Down syndrome.

This presents a grave moral challenge to the medical community -- and to the society at large. Medical care is a social good for which the entire society is responsible. The development of prenatal diagnostic technologies and procedures brings a moral crisis right to our doorsteps -- and our hearts. Will we see people with Down syndrome simply disappear?

In his 2005 article, published in the American Journal of Obstetrics and Gynecology, Dr. Skotko explained that prenatal testing for Down syndrome presents expectant parents with a simple choice -- continue the pregnancy or abort. He continued:

Knowing this, health care providers have historically operated under the assumption that if a woman consents to prenatal screening or diagnosing, she must believe that having a child with DS would be an undesired outcome and wish to terminate her pregnancy if such a diagnosis were made prenatally."

Expectant parents should read that sentence over and over again, and so should those who counsel them.

As Dr. Skotko understands all too well, this moral crisis is not limited to babies with Down syndrome. He asks: "Should expectant parents be able to select out fetuses with an undesired sex? Should fetuses with genes that predispose them to adult breast cancer be prenatally identified? Should couples in the future be supported if they wish to terminate fetuses with genes correlated with sexual preferences?"

The fact that 92 percent of women who are told that their unborn child carries the high risk of Down syndrome choose to abort the baby should shock us all. What does that say about our devaluation of human life and human dignity? This can only mean that these women see a child with Down syndrome as not worth having -- and the baby as a life not worth living.

Dr. Skotko points to the new tests just around the corner and sees a collision coming. Given his important research, we had better see a moral crisis looming. The Culture of Death is gaining momentum before our eyes. Who will be next in line to be considered unworthy of life?

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