Wednesday, August 3, 2011

Down Syndrome: Technological Advances Raise Soul-Shaking Questions About the Meaning of Life

Within a matter of months, the progress of science has outstripped our ability to process the new reality of Down syndrome and, unnoticed by most everyone, stands on the precipice of redefining human life.

Ever since the rise of humanity, Down syndrome, or trisomy 21, has been an integral part of the human condition. Despite all the efforts of medicine and therapy, Down syndrome has always been present. The population with Down syndrome plays a considerable role in almost all communities around the the globe. This may not be the place to discuss the extent of this role. Suffice to say that it is significant, it has existed since time immemorial and it provides a window into the human soul that would otherwise be difficult or impossible to find. Sooner rather than later, it is going to be left up to us to decide what value this role has to humanity.

Now, as has become widely known over the past number of weeks, the possibility of non-invasive prenatal testing for Down syndrome in the first trimester is imminent. This in itself is a development that pushes the philosophy and boundaries of human reproduction in a new direction that could take decades to assess and understand. It also represents an idea that will be controversial and contentious for all foreseeable time.

Then, just as this bombshell has landed right in our philosophical kitchen, science has launched another barrage on another front. As discussed here yesterday, drug therapies that can be expected to improve memory and other cognitive abilities in people with Down syndrome, are in human trials. And, even if this particular drug isn't as effective as hoped, there is plenty of reason to believe that some other drug will be identified in the near future. 

Where does this all leave Down syndrome?

The fact is that the new prenatal testing regime is just around the corner and its use will spread prolifically. After all, it seems inconceivable that society would forcibly put the responsibility of raising and caring for Down syndrome children onto people who do not feel able to accept this destiny. At the same time, many people will work to slow the effect of this testing. Pro-life advocates and religious fundamentalists will be front and centre. There are countries, even in the advanced western world, such as Ireland, that don't even have prenatal screening because abortion in any form is illegal.

So things will take some time to unfold completely. Who knows? The possibility of effective cognitive therapies may even give more people the courage to see Down syndrome pregnancies through to term even when screening comes out positive.

Yet, even with that outcome, we may find that Down syndrome as we know it will eventually come to an end as drug and other therapies mitigate the effects of the condition to a point where it becomes beyond recognition.

Which brings us back to the original question - do we have the right to interfere with this process?

Considering that, as it is, as many as 90% of Down syndrome pregnancies end in miscarriage, it could be understood that any birth of a child with Down syndrome is a minor miracle of nature all by itself. Something like the salmon that leap raging waterfalls to make their way upstream to spawn. Only a small few make it through. But do they have an important job to do? Virtually everyone who has had contact with Down syndrome people inevitably declares that their lives have been changed and that Down syndrome people have brought them joy, insight, empathy and even some kind of magic.

Many many people have tapped into the metaphor (or is it a cliche?) of Down syndrome children as "angels".  You may or may not understand this in a religious sense. However, you may be mistaken if you view this question as one of religious vs. secular values. Or, for that matter, pro-life vs. pro-choice. For a person with Down syndrome, there is no "versus." (ok, perhaps a little self-defense in a tight spot)

Yes, having a child with Down syndrome is challenging and painful in many ways. But is this a necessary pain for humanity? Is it the price we pay to have messengers of unconditional love living amongst us?

Is this one kernel of the essence of humanity that we cannot do without?

(this has been largely double posted from one of my other blogs)

No comments: