...and organise less efficiently. This contributed to a smaller cerebellum (about 60 percent of the normal size) and cognitive delays.
Mice in which DS was induced genetically showed similar traits – a smaller-than-normal cerebellum and cognitive delays. Then the researchers developed a drug and injected it into the little furballs and guess what? An increase in cerebellum size and gradual restoration of developmental functions took place. In their own words, the drug “dramatically bolsters learning and memory” in the mice.
Just late last year another group of researchers at John Hopkins identified a gene as a means to cure chromosome abnormalities. Tests indicated that employment of this gene led to an increased production of cells with normal number of chromosomes. These tests were performed on cells obtained from people with Down syndrome and Edwards syndrome (trisomy 18).
Although both experiments have yet to be sufficiently developed for use on human beings, they appear to be most promising by far compared to earlier efforts. We could be less than a decade away from developing a cure.
My heart leapt. I couldn’t wait to whisk Amos to a hospital and get him started on those treatments as soon as they become available. Then something struck.
Does anyone with DS need to be cured of it?
I pulled the brake here because it concerns ethics. And anything concerning ethics is not easily answered.
So what is it that makes DS teeter so precariously on the ethical tightrope of a potential cure? The considerations might be many and complex, but allow me to suggest three:
So would DS ever become an issue?
In my opinion as a parent of a child with DS, it would. Just like any other condition classified medically to be outside normal bounds (e.g. loss of limbs, sight, cognition, communication tools) DS becomes an issue if it severely impairs the individual’s ability to function safely and runs the risk of endangering her and/or others around her.
If it comes to this then DS requires fixing.
But it is not an issue if the individual is able to function independently and safely despite being diagnosed with DS. She might even be acutely aware of her condition and be totally cool with it. Simply put, she might not even want to be cured of it.
In which case, the individual should be allowed to decide for herself if she wants to be cured of her condition. It is about empowerment, and an individual with DS is entitled to it as much as we are.
So if I have the chance, would we want to cure our son, Amos of Down syndrome?
We would probably say yes under two conditions:
He is sufficiently developed to understand what a cure means and expresses desire to go through with it; or
He is incapable of comprehending his condition (or the significance of a cure), and unknowingly endangers himself and others as a result of it.
Otherwise I would gladly let him be, particularly if a cure entails complications.
Ultimately, we ought to remember that character traits and personality define an individual, not her physical or medical condition. And like all of us, the individual should be empowered to decide for herself what needs fixing and what does not.
If there is a cure for DS, would society become less tolerant and receptive of those who remain “un-cured”?
Perhaps this is worth pondering over.