Pre-natal testing for Down syndrome: Why bother?

The following piece appeared in the Spring 2015 edition of Down Syndrome World magazine.

History shows that when pre-natal tests for conditions that cannot be treated in the womb are introduced, termination of these pregnancies increase.  Down syndrome is no exception.  25 years ago when amniocentesis was the only definitive test for Down syndrome, researchers calculated a 20% abortion rate.[1]  Over the last two decades, however, as new tests were introduced the abortion rate skyrocketed.  The most recent published study on this reports that between 2006-2010, there were ~5,300 babies with Down syndrome born and  ~3,100 selective abortions performed in the U.S. annually, concluding that the rate of live births of babies with Down syndrome was approximately 30% lower than it would be without prenatal testing.[2]  Clearly, advances in prenatal testing since the 1970s have been followed by increased selective abortions for Down syndrome.

In 2011 Non-Invasive Prenatal Screening (NIPS) tests for Down syndrome were introduced.  These are deeply troubling as we can only expect further increases in the abortion rate.  While we know that some parents legitimately use prenatal testing to prepare, the stark reality is that it is usually used to detect, then abort, pregnancies testing positive for an extra 21st chromosome.  Such pre-natal tests move us closer to eliminating entire sub-populations.

Every individual has unique value, no matter what his or her capabilities.  Since there was nothing positive we could do about the results, we declined pre-natal testing for Down syndrome in both of our pregnancies.  While we were initially devastated when our first-born was diagnosed with Down syndrome at birth, we soon learned to appreciate our son’s many gifts.  Evan has an unparalleled “joie de vie” (love for life)- an attitude we could all learn from.  He also has taught us that “imperfection” is what makes us all human.  Such a lesson no pre-natal test can predict.

[1] Egan et. al., “Demographic differences in Down syndrome live births from 1989 to 2006”, Prenatal Diagnosis, 31 (2011)

[2] de Graaf et. al., “Estimate for the live births, natural losses and elective terminations with Down syndrome in the United States.”, American Journal of Medical Genetics, Part A 167A (2015)