MURDER, POLITICS, AND THE END OF THE JAZZ AGE
by Michael Wolraich
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Down's syndrome cells 'fixed' in first step towards chromosome therapy
By artappraiser on Thu, 07/18/2013 - 1:17am |By Ian Sample, Science Correspondent, The Guardian, July 17, 2013
Scientists have corrected the genetic fault that causes Down's syndrome – albeit in isolated cells – raising the prospect of a radical therapy for the disorder.
In an elegant series of experiments, US researchers took cells from people with DS and silenced the extra chromosome that causes the condition. A treatment based on the work remains a distant hope, but scientists in the field said the feat was the first major step towards a "chromosome therapy" for Down's syndrome. [....]
URL:
http://www.guardian.co.uk/science/2013/jul/17/downs-syndrome-cells-fixed-chromosome-therapy
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Comments
You've posted about this before, Arty. What does it mean for people who already have Down Syndrome? Down Syndrome describes people who have accomplished alot of things - including climbing Mount Everest, so I'm not convinced that it is really that debilitating of a condition. Many people who look and talk normal have accomplished far less. My exposure to folks with Down Syndrome has shown me a group of people that I think we could learn from - not that we should extinguish.
Alot of it may be that people with the condition look much different and I think Dagblogger Wattree has made a good case for why we should be ever vigiliant of our tendency to discriminate based on that.
by Orion on Thu, 07/18/2013 - 3:12am
The average Down's Syndrome IQ is 50, though those with Mosaic Down's Syndrome average more like 80.* Sure, some with Down's may have done remarkable things, just like a guy I met from the wheelchair olympics who amazed me with how fast he could get down an escalator on his own. But I bet he'd prefer the ability to walk back with a bit of genetic modification.
*and no, IQ is not everything, but really... if we cure future muscular dystrophy, what about the ones who still have MD now?
by PeraclesPlease on Thu, 07/18/2013 - 9:24am
Are you really saying this, Orion? You're equating curing a disease with "extinguishing" a group of people? Really? Do you also believe that because we have a black President and there have been so many people of color that have "accomplished a lot of things" we should not bother to continue working on a cure for sickle cell anemia?
The fact that some people with Down's syndrome have been able to do so many things is a triumph of their own determination, not that the disease has merit as a condition. This is equating who a person is by what they suffer from and deciding that the suffering must be good for them.
As someone that has a disease with a genetic factor to it, I am excited by news of science working on curing diseases in this way. In my case, such advances would not affect me other than to ease my mind that perhaps the next generation of people will not have to go through what I have had to endure. A debilitating disease should not be rationalized as being a good thing for those that get it because it 'makes them better people.' No one deserves to suffer and Down's syndrome should not be defined by the small number that can succeed despite their condition. A debilitating disease enslaves the body. Just because some are able to rise above their conditions and channel their suffering into something productive does not make that slavery a good thing.
For example, just because Helen Keller achieved so much and a blind poet wrote the Odyssey and Ray Charles was a musical genius, would you forgo 'extinguishing' blindness?
by MrSmith1 on Thu, 07/18/2013 - 9:43am
I've heard of autism as a sometimes other-worldly enabling condition, but never Down's.
by PeraclesPlease on Thu, 07/18/2013 - 9:59am
I was just asking a question and putting up some ethical counter arguments. I've read articles about pre-natal screenings. Since Down Syndrome is something someone has from birth, they are legitimate ethical questions. Calm down.
by Orion on Thu, 07/18/2013 - 12:23pm
You have a bad tendency to consider any disease or illness that includes symptoms affecting the brain as all hogwash simply because you were the victim of the infantile field of psychiatry which does make up illnesses.
Leaving everything natural "as God intended" would mean much more death and suffering. Human beings invented medicine to outwit that plan. Genetic mutation is one of the things that can cause disease and suffering. Medicine is going to use the tool of tinkering with genetics when it is able to just like it used antibiotics when they were invented. Deal with it.
If we were to leave victims of Down's syndrome as God intended, that would mean they mostly die by the age of 12 like they did in 1912 rather than live to the age of 60 like they do now.
by artappraiser on Thu, 07/18/2013 - 1:33pm
Perhaps you may be right. I worked with people with Down Syndrome - of course I know it is real, if you're suggesting I don't. I just worry about dehumanizing these kids - there is a fine line about all this that is worth recognizing.
by Orion on Thu, 07/18/2013 - 2:30pm
What ethical questions are you looking to debate? Whether or not we should cure chronic illness? Should we accept all diseases as just the price of living in a physical universe and throw up our hands and do nothing because it's "God's will?" Do we let 'natural selection' weed out the weak and let only the strong survive? Stay calm? Why?
You've written so movingly about mental illness in the past, and the toll it has taken on your life,. how can you question whether or not it is ethical to want to cure a condition as serious as Down's Syndrome?
As someone who has to deal with physical disabilities every moment of every day of my life, I want to encourage the scientific community to continue to use the human genome to find new cures and more effective treatment options for all the chronic diseases which have devastated so many lives.
Disease is not a punishment, nor is it an obstacle purposefully put in our path so we can become better people, (although we may tend to put it into that context for motivation purposes), it is a genetic mistake; an accident, and one we are beginning to understand how to fix. To me, the bottom line remains, why would anyone not want to correct a mistake if they had the ability?
by MrSmith1 on Thu, 07/18/2013 - 2:00pm
Re:
You've written so movingly about mental illness in the past, and the toll it has taken on your life,
I would disagree with you here, Mr. Smith. He's written movingly about the toll psychiatric treatment has had on him. In all his discussions with me, he always basically comes from the position that most mental illness is not real but is caused by psychiatric treatment. He argues a lot in favor of letting people's minds alone, that what Mother Nature hands them is what is meant to be.
I have long followed this line of debate, since before I was interested in the folly of a lot of the current medical industrial complex, because this meme is an old favorite in the art world. I.E., most artists can be labeled mentally ill....if Van Gogh wasn't a self-mutilater, nowadays, they would put him on Prozac/give his electro shock, and we wouldn't have all those beautiful paintings, yadda yadda. The whole issue gets into things like what a totalitarian system can do by using a diagnosis of mental illness for those who don't socialize properly.
One of my favorite things now is to try to make people realize that the problem really is the infantile state of our understanding of how the human brain works. Until we have more knowledge, all else is the folly, really. And people should understand that if they need treatment for mental illness, that we are at the stage where they are the guinea pigs, just like those who risked illness or death for those first innoculations against smallpox. That the use of psychiatric pharmaceuticals right now sucks to high heaven does not automatically mean there is no such thing as mental disease and illness due to chemical/hormonal imbalance.
by artappraiser on Thu, 07/18/2013 - 2:41pm
Arty:
Of course mental illness is real. Of course Down Syndrome is real. Of course autism, real autism, is real. I've tried to post stuff from reformist psychiatrists instead of say Scientologists for just that reason.
What's really concerning about Down Syndrome, however, is the fact that the disorder is something inherent to them physically. Alot of the cures talked about for it involve pre-natal testing, etc. - that sounds a bit like social engineering.
It's not black or white, man: http://www.boston.com/lifestyle/health/2013/03/23/new-prenatal-genetic-tests-hold-promise-worries/pxwVIZfr00h9T5dBHZCiuK/story.html
by Orion on Thu, 07/18/2013 - 2:56pm
Well, I am glad to finally get this admission out of you! I don't think you realize how unbalanced many of your postings on this topic sound. I debate you about it because I think you are capable of doing a lot of good on these issues with your writing, but only if you stop making it so black and white. I.E., admit that some lives have been saved by Prozac, not that it's the font of all evil.
by artappraiser on Thu, 07/18/2013 - 3:00pm
I can't go as far as to say good things about Prozac because I think that SSRIs are dangerous as a rule. They operate similar to many illegal drugs. Medication should not be legal that doctors themselves admit they "don't know how they work." There should be a certain level of honesty and responsibility.
But I regularly take anti-seizure medications, vitamins, etc.
by Orion on Fri, 07/19/2013 - 4:34am
Thank you, Mr. Smith.
I love this part:
The fact that some people with Down's syndrome have been able to do so many things is a triumph of their own determination, not that the disease has merit as a condition.
In a nutshell it explains why I have always been uncomfortable with the folks that think of Down's syndrome people as God's little angels, a gift to humanity, you know the type. I know they are good hearted and I know that the developmentally disabled are safe with them. But at the same time, their views in their essence also enable those who are really the enemy.
Christopher Hitchens got at this in some of his takedowns of Mother Teresa. While his jihad against her was not always fair in my humble opinion--but what do you expect from a polemic?--there was a side to her practices which glorified suffering that was not always pretty. It's like this, you have two choices, and basically it's the conundrum that the Catholic church can never decide which side it's on:
1) accept God's will and suffer nature, or
2) use the brains that God endowed us with to outwit the bad breaks nature throws at us
And I like to go back to Genesis (funny [not] it has the same root as gene) where we were in the Garden of Eden and then we were thrown into this nasty other world to battle what might be thrown at us. And we will eventually be judged on how we wage those battles...
by artappraiser on Thu, 07/18/2013 - 2:18pm