Ch. 3, Part 5: Percentages mislead, again: lower termination rate = more Down syndrome abortions than ever before.

In this penultimate section of Chapter 3, I discuss how the termination rate following a prenatal diagnosis for Down syndrome has been revised down from 90% to around 75%. And, how that counterintuitively means there are more pregnancies positive for Down syndrome being aborted than when the termination rate was 90%.

In 2009, the AIA conference was in Washington, D.C., the first convening of Down syndrome advocates upon our capital in several years, and precisely why we of the conference planning committee selected it as the site. Having presented the previous year at a well-received breakout session and led a plenary town hall meeting to discuss how the two national Down syndrome organizations, AIA, and the various research funding organizations could work together, instead of at odds (which occurred and occurs far too often between NDSS and NDSC), I was tapped to headline the Saturday plenary.

As usual, I cited the 90% figure, and, as usual, a medical practitioner challenged me on that number. This time it was Janice Edwards, a Genetic Counselor on faculty at the University of South Carolina. Janice and her colleague, Dr. Richard Ferrante, had been instrumental in convening a consensus group which will be discussed in detail in the chapter on Support. She was an ally in that she, too, had concerns with how prenatal testing was administered and wanted to make sure it was carried out in an ethical, caring way. But she firmly contested that the termination rate was 90%, saying, repeatedly, “I just don’t think it’s that high.”

As mentioned, Janice’s response was the same as many other medical providers. Their comments are expressed almost as reactions, as though the 90% figure is a critique of them personally. Providers feel compelled to contest it and say that in their experience it is not that high. Which has always made me wonder: why?

Betraying a guilty conscience?

Why do medical practitioners consider a termination rate as high as 90% an indictment that prenatal testing is being administered incorrectly? The practice guidelines of ACOG instruct that all women are to be offered prenatal testing and if they receive a prenatal diagnosis, then, practitioners “should” counsel them about termination as an option. Abortion is, as already covered, the only justification for offering prenatal genetic testing according to the guidelines, themselves. Most medical practitioners surveyed say that they would terminate if they were to receive a prenatal diagnosis of Down syndrome. And, in more than half of the states, their Supreme Courts have recognized a child with Down syndrome as a legal damage. So, why is 90% seen as a problem? Isn’t abortion a “pregnancy management option” that if 90% of mothers choose, that choice should be respected and seen as fulfilling the professional guidelines?

Instead, it is seen as an indictment because practitioners intuitively understand that if women are terminating at that high of a rate then they are not being accurately counseled. With the choice following a prenatal diagnosis being a binary of one of either abort or continue the pregnancy, the fact that 9 out of 10 moms are opting to abort is evidence that some are being guided to make that choice. And, indeed, there is evidence to support this. In a survey of practitioners, while almost 15% admitted to emphasizing the positives about Down syndrome and even urging their patients to continue their pregnancy, 25% of practitioners admitted to emphasizing the negatives or even coercing their patients to terminate their pregnancies.

Evidence found to support a hypothesis

To Janice’s credit, she set off to find the evidence to support her intuition that the termination rate was not as high as 90%. And so, she did.

It turns out, the 90% figure was based on studies from the late 1980’s. At that time, recall, the standard of care was to only offer prenatal testing for Down syndrome to women 35 and older. At that age, most of these moms were aware of the chance that their pregnancy may have an increased chance for a genetic condition, and, as a result, many already had in the back of their minds the possibility that they may not choose to continue the pregnancy. Also, this was at a time before the impact of public laws and the changing of society’s view towards those with disabilities (which will be discussed in detail in Chapter 5) had taken effect, such that those with Down syndrome still were not expected to be included in mainstream classrooms and the community. It is not surprising then, that not just most women chose to terminate following a prenatal diagnosis, but that only 10% chose to continue.

Janice and her co-authors surveyed the published research since those older studies that reported 90%. What they found was that there were very few published studies on termination rates following a prenatal diagnosis, largely because almost no state tracks that information. They did find three states that did: Maine, Hawaii, and California. In the Maine study, it actually reported a higher termination rate: 93%. In the two Hawaii studies, the termination rates were 79% and 84%. And, in the three California studies, the reported termination rates were 88%, 72%, and 61% in the most recent of all of the studies. Their survey found that there was a range between 92% and 61%, with the weighted average, i.e. taking all of the participants in all of the surveys and how many elected to terminate, being approximately 75%.

What I refer to as the “Natoli study”, after the last name of the lead author, was heralded when published as refuting the 90% figure. Health care providers felt vindicated. They now had a study to refute the criticisms, very often coming from pro-life organizations, that the termination rate was not the out-dated number of 90% and instead, it was possibly as low as 61%.

Percentages mislead, again.

The numbers, in and of themselves, however, are just that: numbers. The study did not report that those women making their decisions did so as the result of nondirective counseling, with recommended support resources offered, and consistent with their values. The findings did not refute the previous study that some practitioners urge and coerce their patients to make a decision to continue or terminate. But, nevertheless, because there was a published study with a number lower than 90%, then criticism of how prenatal testing was administered was no longer considered as justified.

As shown in the previous chapter, however, when dealing with percentages and how they are reported, they can foster misconceptions. Just as 99% accurate isn’t what you think it is, a lower termination rate does not mean there are fewer selective abortions. To the contrary, it means just the opposite: there are more selective abortions of pregnancies with Down syndrome being performed than ever before.

Recall that the 90% figure was based on mothers 35 or older. Those pregnancies only accounted for 20% of all pregnancies at the time of those studies. If you have 500 pregnancies, 20% of which are women offered prenatal testing, that would be 100 pregnancies, that then 90% of which terminate following a diagnosis, equaling, at most, 90 selective abortions. Now, let’s take the low end of the Natoli study range of 61% for the termination rate. But, now all women are to be offered prenatal testing, so all 500 pregnancies. If 61% of those terminate following a prenatal diagnosis, that results in 300 selective abortions. I recognize that the minority of pregnancies offered prenatal testing ultimately receive a diagnosis, but the end point would remain that there are more abortions when prenatal testing is offered to all women, than to just 20% of them.

The final section of Chapter 3 will share how actual experience and current analysis bears out my back-of-the-envelope math.