Choice in the Cold Light of Day: USA Today Column on Down Syndrome Screening

There is a column in USA Today from a couple of days ago by Dr. Brian Skotko, concerning the implications of the new blood test screening for Down syndrome that will be available at 10 weeks of pregnancy.

The article speculates about what may happen now that a far less invasive test for Down syndrome will be available: "Will America cull people with Down syndrome?"

Dr. Skotko writes that he and his team surveyed over 3,000 families who have a family member with Down syndrome to find out how they view the effect this condition has had on their lives. Surprisingly (or not!), the results were massively positive, with 99% of respondents answering that they truly love their DS children and even 88% of siblings responding that having DS in their family has made them better people.

Besides looking at the expressed satisfaction (for lack of a better word) of DS families, Dr. Skotko also mentions the achievements of some people with Down syndrome.

And he goes on to say, "I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision."

Very difficult decisions indeed.

What Dr. Skotko does not address is the overall impact on humanity that could result from a sharp reduction in DS births. Do we really want to mess around with the essence of humanity by altering the balance and diversity that has existed for tens of thousands of years?  Do we have the wisdom that is needed to alter the nature of our species? Some may say, yes - many would say, clearly not.

But, equally clearly, the impossibility of imposing responsibility for the societal impact of these decisions on pregnant women and their spouses.

And don't forget, it doesn't end with Down syndrome. Who knows what possibilities could be opened up with advances in genetics and medicine, even in the short term, never mind in a few decades? This is a conversation that is very large and yet as intimate and personal as there is.

I am afraid that time and science may not allow us to adequately weigh or understand the consequences.