Does Down Syndrome Need Fixing?


In September 2013, researchers at the John Hopkins University found out that the extra chromosome 21 in individuals with Down syndrome (DS) causes pathways in the brain to develop...

...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:

  • DS is congenital and its cause is unknown

    The individual was helpless against it; nobody asked for it and there is no consequence to speak of. The cause-and-effect logic we are so accustomed to falls apart and we are left with more questions than answers. We do not know the reason it happens and the purpose it serves. By attempting to cure it we do not know if we are making things better or worse.

  • DS has beautiful traits that do not need fixing

    The problem here is that whilst DS has medical issues that need fixing, it also demonstrates qualities that people without DS might not even be capable of. Simplicity and affection, for instance. Some of us might cringe at their propensity to express joy and unreservedly offer hugs because we think it is over the top and inappropriate social behaviour. Here it seems we are the problem, not them. 

  • People with DS are able to live and work just like anyone else

    We have seen them; actors, artists, cooks, entrepreneurs, activists. They live independent lives, they get married, they support each other and they look out for their ageing parents. On top of that we do not see them coveting the nasty stuff that so often define us: power, ambition, wealth. Granted, their development might have been delayed, but what is wrong with that? After all, we created weapons of mass destruction, not them.

   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.

C E Tham

Through blogging and social media, CE Tham and his wife hope to share about their parenting journey with their older boy Joel and his younger brother Amos, who was diagnosed with Down syndrome at birth.

CE Tham and his family can be reached at thumbs.sandals@gmail.com or at their blog.

1 comment

  • Andrew Soh

    Andrew Soh - Thursday, 04 August 2016

    Dear writer, firstly must comment you for an excellent piece and managed to point out all that is lacking within our society, ourselves and also what is abundance be it from a persons with Down syndrome or special needs. The decision to have or not have a cure administered will always be a million dollars question that is almost impossible to determine what is right and what is wrong. As for your ending question, this I must say is very real and we as advocating for persons with Down syndrome daily are always faced with such dilemma and also other question like parents have a choice mah, if they find it challenging why do they still bother to go through with the birth of the child with Down syndrome? As the latest government survey shows, people only speaks about inclusion if it is not in their face, perhaps "nimby" syndrome again or simply they are too cold to care. So with the latest showcase of Mdm Ho Ching carrying a bag designed by a child with Autism, would this episode propel autism into stardom and make it more trendy? All these remains to be seen.

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