The power of context: how what’s missing informs the context

In previous posts, I have asked whether Down syndrome is already disappearing and the power of context as the remaining element to tip prenatal testing to the point of an epidemic. Here’s how the first post reinforces the second.

In answer to another post on disappearance, one thing that is lost if Down syndrome is disappearing is lives with Down syndrome. That is a bit axiomatic: yes, of course if there are fewer babies born with Down syndrome due to selective abortion following prenatal testing, then there are fewer lives with Down syndrome than otherwise would be expected. This creates a negative feedback loop that informs the context in which prenatal testing is administered.

As discussed in the post on Gladwell’s theory in Tipping Point–and as simply the lived experience tells you–our decisions can be affected by the social context in which they are made. Many of us probably wouldn’t have had that first drink, smoked our first joint, or done any number of other things that are typical results of peer pressure. We believe that as we mature, we are less susceptible to peer pressure. But then, how many of us resisted buying a smart phone, only to end up buying the one that our friends or family had.

So, context informs our decisions. But, what’s just as important is what’s missing from that context.

As I often say, there has never been a better time to be born with an extra 21st Chromosome than the 21st Century (TM). Right now are the first real generations of individuals with Down syndrome to benefit from early intervention, inclusion instead of segregation at schools, community living instead of institutionalization, doubled life expectancies, and fuller personal relationships. But right when our society has become the most inclusive it ever has been, prenatal testing advances are causing the greatest decrease in the natural number of lives born with Down syndrome.

How will those missing faces impact the context of earlier and more accurate prenatal testing technologies?

Again research, and basic human experience, demonstrates that getting to know someone with Down syndrome positively impacts your outlook on what living a life with Down syndrome means. The converse is equally true: the more segregated, ostracized, stigmatized, or rare a condition is, the less favorably it is viewed.

Similarly, with a culture that already cavalierly describes pregnancies carrying a child with Down syndrome as a “fetal flaw,” a “defective fetus,” and “preventable” how much more likely will that attitude become when there are indeed fewer children born with Down syndrome because women selectively terminate following a prenatal diagnosis.

For years, this has been the concern Michelle Whitten with the Global Down Syndrome Foundation raised when the 90% termination rate was typically quoted. At conferences and in conversation she expressed her concern of what impact it could have on an expectant mother if she knew that 9 out of 10 women in her situation chose to terminate? Wouldn’t that make it seem more like “the thing to do?”

While the termination rate is likely no longer that high, as I’ve written about elsewhere, most women do terminate following a prenatal diagnosis. And, with more women than ever receiving a prenatal test result for Down syndrome, this means there are more selective abortions than ever before. Hopefully the 90% figure is not included in any prenatal counseling following a prenatal test result, since it is outdated. The mother will nevertheless have entered the physicians office in a society where there are fewer babies with Down syndrome. And, she very likely will have a peer group that underwent prenatal testing and either express their relief at receiving a negative result for Down syndrome or one of whom terminated following a positive result.

In this way, prenatal testing begets a self-fulfilling prophecy for selective abortion: as prenatal testing is seen as more routine and more selective terminations occur, Down syndrome will become ever rarer and, moreover, seen as something that can be prevented through prenatal testing. It is into this environment that we expect non-directive genetic counseling to somehow empower a woman to make a choice when insurance coverage, professional guidelines, popular commentators, and the culture invariably point in but one direction.

Though we may be at a crossroads where it’s never been a better time to give birth to a child with Down syndrome, the context of the culture will point one-way following a prenatal test result.