A New Paper Clarifies the Facts

When talking about Down syndrome and abortion, the statistic most commonly cited in the U.S. is 90%. However, a paper was recently published in the American Journal of Medical Genetics that shows that the actual number is considerably less.

The study, conducted by Gert de Graaf, Frank Buckley, and Brian Skotko, applies rigorous statistical modeling to diverse data sets in an attempt to provide the most accurate number possible, and for one primary reason: So we can determine - over time - the impact emerging noninvasive prenatal screening (NIPS) technologies will have on the termination rate after a prenatal diagnosis of Down syndrome.

So what is the number? For the most recent years (2006–2010), the researchers discovered that:

• The estimated live birth prevalence for DS was approximately 12.6 per 10,000, or a total of around 5,300 births each year;
• The number of pregnancy terminations following prenatal diagnosis is estimated at 3,100 each year;
• Taking natural losses into account (miscarriage), the authors estimate that there would have been 7,600 live births each year in the absence of prenatal diagnosis that resulted in abortion.

The authors have determined that the population of individuals living with Down syndrome is 30% lower than it would be if there was no prenatal diagnosis that results in abortion. This study validates an earlier 2012 study that claimed the abortion rate in the U.S. following prenatal diagnosis is around 67%.

So, where did the 90% number come from? From a 1999 European study that included little data drawn from the U.S. Since it is not an accurate representation of the situation in the U.S. it should no longer be used. In fact, continuing to use the 90% statistic could be counterproductive to the end that advocates desire. If families who receive a prenatal diagnosis hear that 90% of families decide to abort, the pressure on them to do the same is tremendous. Many might wonder who their child’s peers would be, what support services might be available for such a small population, and if their family would be outcast in society for making such an unusual choice.

The Jerome Lejeune Foundation’s goal is to use this new benchmark as a watershed point to show the success of our efforts and an increase in births over time, rather than a decrease. We firmly believe that can be accomplished through Down syndrome prenatal information laws that we are involved in promoting to not abort but to accept and love a child, and through research into prenatal therapeutic interventions that will provide hope and encouragement to families.

The Jerome Lejeune Foundation provided a commentary on the article by de Graaf, Buckley, and Skotko that can be read here.