We have reached the final section of Chapter 3‘s exposition on Down syndrome selective abortion. The previous section ended with the Natoli study finding the termination rate in the United States was less than the historically reported 90%. However, with the standard of care changed such that all women are to be offered prenatal genetic testing, it is having counterintuitive effects.
Each of the California studies in the Natoli study bear this out. California is one of two states (Iowa being the other) that has a state-funded prenatal genetic testing program. California subsidizes the cost for prenatal screening and diagnostic testing—hence why it is one of three states that tracked how many abortions and births took place.
The oldest study had the highest termination rate, conducted when the standard of care was to offer prenatal testing for Down syndrome to moms 35 and older. The next study was after California expanded the offer of prenatal testing to all moms, and it had a lower termination rate. However, in the oldest study, the total number of selective terminations was 469; in the study after the offer was expanded to all moms, the number of selective terminations was 1016, even though the termination rate was lower.
The final, and most recent, California study further showed the impact prenatal testing and selective abortion was having. That study, referred to here as the “Kazourni study” (again for the last name of the lead author), reported that due to California’s prenatal screening program and selective abortion, there were 47% fewer children born with Down syndrome than otherwise would have been. This means that for every pregnancy positive for Down syndrome, half of them were selectively aborted. Put another way, at the time of the Kazourni study, for every baby in a bassinet in the hospital’s maternity ward that was born with Down syndrome, there was another pregnancy positive for Down syndrome that had been aborted.
An elimination rate
That last figure is what is referred to as the “elimination rate,” i.e. how many children with Down syndrome would have otherwise been born but for prenatal testing and selective abortion. This figure has increasingly become the focus of those engaged in addressing how prenatal testing is administered and its impact. The reason is, as the Natoli study unintentionally demonstrated, that in the United States, we still don’t know what the termination rate is.
Maine, Hawaii, and California, as wonderful as each state truly is, can hardly be considered representative of the United States en toto. Whereas the termination rate was higher than 90% in Maine, the Centers for Disease Control (“CDC”) found that the birth incidence for Down syndrome, i.e. the number of children born with Down syndrome, was higher in Utah than elsewhere in America. This is not due to some environmental factor causing more pregnancies to have Down syndrome. Instead, it is expected that this reflects the culture of Utah being predominantly Mormon, socially conservative, and pro-life. As a result, there are larger families, with mothers having more children later in life than elsewhere, who for religious or personal reasons do not choose to abort if they are told prenatally their pregnancy is positive for Down syndrome (if they even choose to have prenatal testing).
What has been estimated, however, is the expected elimination rate in the United States of pregnancies with Down syndrome. This is done by estimating the expected number of live births based on the known birth statistics and the factors that can affect a pregnancy positive for Down syndrome not resulting in a live birth. Dr. Brian Skotko (about whom more will be written in the next chapter) and his colleagues crunched the numbers to estimate the total number of pregnancies positive for Down syndrome for each year from 1900 to 2010. They then factored the percentage that would naturally miscarry (more on that in the next chapter, too), and then the reported incidence of live births of Down syndrome. Based on their analysis, they estimate that in the United States the elimination rate, i.e. the percent of pregnancies that would have resulted in a live birth but for prenatal testing and selective abortion, is approximately 30 percent. Put another way, nationwide, it is estimated that there are 30% fewer children being born with Down syndrome that otherwise would be born due to expectant mothers accepting the offer of prenatal testing and terminating their pregnancies following a prenatal diagnosis.
Although there are more selective terminations for Down syndrome than ever before, the elimination rate is not as high as might be expected for another societal change: more women are having more children later in life than ever before. The average age for women to become pregnant in the 1980’s and 1990’s was between the early to mid-twenties; now, that average age has moved to the late 20’s to the early 30’s. Since the possibility of having a child with Down syndrome increases with the age of the mother, with more women becoming pregnant later in life, so, too, has the number of pregnancies positive for Down syndrome increased.
It is this corresponding increase in the number of Down syndrome pregnancies which has offset the expected impact of the increasing number of women being offered prenatal testing, somewhat to the consternation of certain public health officials.
In England, which has a single-payor health care service, the National Health Service (“NHS”), it tracks the total expenditures on prenatal care, the number of selective terminations, and the number of live births for Down syndrome. In the mid-2000’s, researchers found that while prenatal testing and selective abortion both have been increasingly performed, the total number of live births in England of children with Down syndrome had remained essentially the same as the historical average. Even though these researchers reported a termination rate of 90% (that number still being accurate in England in this century), and an elimination rate of around 50%, still the number of babies born with Down syndrome was the same as had been experienced for decades. In the English example, this is due to there being twice as many pregnancies positive for Down syndrome as had occurred before the widespread use of prenatal testing and selective abortion.
An unexpected conclusion
This analysis of prenatal testing and the impact of selective abortion arrives at an unexpected conclusion. Those who are vocal critics about prenatal testing, typically those who identify as pro-life, focus on the (still) relatively high termination rate and argue against prenatal testing as solely being performed to facilitate abortions. Defenders of prenatal testing’s administration, who also happen to more often than not identify as pro-choice, or, even if they personally are pro-life respect a woman’s right to choose abortion, then respond to these critiques by defending the medical guidelines, practice, and the expectant mother’s decision to have prenatal testing and choice to have a selective termination. And, round and round it goes, essentially breaking down along typical pro-life/pro-choice positions with the same number of minds being changed and common ground being reached, i.e. nil. What gets lost by the invocation of the “A-word”—abortion—is an overlooked phenomena.
While there are more women than ever having prenatal testing, and there are more pregnancies than ever positive for Down syndrome, and more women than ever are choosing to abort those pregnancies following a prenatal test result, this fact is also true:
There are more women than ever choosing to continue a pregnancy after being told it is positive for Down syndrome.
It is true that right now, there have never been more moms who are choosing to abort a pregnancy positive for Down syndrome, but there also has never been a time when more women are finding out prenatally that they are carrying a child with Down syndrome and affirmatively choosing to give birth to that child.
With this counterintuitive conclusion being true, then, it makes it all the more relevant to learn what are expectant mothers being told about what Down syndrome is and what kind of life is possible for a child with Down syndrome. Those two subjects are the focus of the next two chapters.
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