New Down syndrome testing recommendations-a bioethics point of view

New guidelines by the American College of Obstetricians and Gynecologists published in the January issue of the journal Obstetrics & Gynecology now recommend that every pregnant woman, regardless of age, should be offered a choice of tests for Down syndrome.

Down syndrome is a condition that occurs in one out of every 733 live births, according to the National Down Syndrome Society, and affects more than 350,000 people in the U.S. The condition is characterized by the presence of an extra chromosome which causes mental retardation, a characteristic broad, flat face and small head and, often, serious heart defects.

The guidelines for testing are based on the development of a new, less invasive technique called the "nuchal translucency test."

The main reason for the recommendations appears to be to make mothers more knowledgeable so that they can prepare for the challenges of raising a child with special needs or so they can choose to terminate the pregnancy.

What I would like to know is: is this ethical? Is this just part of the dangerous slippery slope that is leading to a world of 'made-to-order' babies?

To get a more knowledgeable point of view I asked Karama Neal Ph.D, a senior program associate for the FACES program at Emory University who also holds an MA in bioethics, about her opinion on the new recommendations.

According to Dr. Neal, "the development of less invasive testing is a useful step. But pregnant women and their partners need to consider their potential response to possible results BEFORE choosing to take the test. Having more information may not always be the best option for every woman. Furthermore, it is important to note that the 80% accuracy rate of the nuchal translucency test means that 20% of tested fetuses with Down syndrome will not be identified."

Nevertheless, Dr. Neal adds that "pregnant women should feel free to ask for it if their physician does not offer it." This is particularly important, she says, because all sonographers may not be trained to provide it.

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