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Life with a Lethal Gene
charles robert darwin writes "The New York Times is running a story on young people who are choosing to get genetic tests for conditions like Huntington's Disease that develop relatively late in life. Apparently, while a genetic test for HD has been around for a while, very few people who have a parent with the disease choose to take the test. This story focuses on a young woman who did and tested positive. The piece follows her as she deals with the consequences. '...as a raft of new DNA tests are revealing predispositions to all kinds of conditions, including breast cancer, depression and dementia, little is known about what it is like to live with such knowledge.' With the HapMap and the $1,000 genome, this is something we are all going to face in one way or another very soon, and we really need to start thinking about it."
Would one be obliged to inform insurance companies of this "pre-existing" condition. If so, it seems one would probably be better off not knowing.
Why? If I knew I was going to die in 5 years, I wouldn't bother saving for retirement, or trying to get ahead in my career, or buying a house, or not getting that really nice sports car that I talked myself out of. I also wouldn't have any children if I would be passing on the disease to them, or just leaving them without a parent, for that matter.
I would also probably be bummed out for a while. But on a long enough scale, we are all dead.
But if enjoying life is doing everything that is bad for you, why not do all that stuff anyways? If you avoid it, by defintion, you haven't really lived.
I wonder if I use bold in my signature, people will notice my posts.
But how about the people you care about and who care about you? They probably would like you to live a long life, even though it may contradict your "live fast, die young" credo.
.sig has never felt more a propos)
(BTW my
"In our tactical decisions, we are operating contrary to our strategic interest."
I think you should also consider that the anticipation of doing something is often better than the actual doing of something. When you find out you have, say, 3 months to live, you can no longer anticipate to do a lot of things, and that makes your last 3 months of living rather miserable, if you ask me.
I guess what I'm really saying here is that my plans for the rest of my life are far more important to me than anything I could do in a final 3 months, regardless of any knowledge of my imminent demise.
Game! - Where the stick is mightier than the sword!
Well, whatever you do, don't get Alzheimer's disease. It sucks.
My grandmother just turned 94 and has advanced Alzheimer's disease. She can barely walk anymore. I devote a few hours of my life every single day to caregiving. If you've never known someone like this, you really have no idea what's involved. Yeah, we could put her in a home. We could watch her die sooner that way, wearing diapers and ceaselessly, hopelessly calling out for someone to please take her home. As it is now, she wears diapers, but at least we always change them. In nursing homes, they don't.
Have you ever had someone you know and love, who helped raise you and even changed *your* diapers and then helped teach you how to count and how to read and how to do puzzles and math and typing and how to play games, who taught you the names of the plants that grow out in the back yard? And now she can smile and say "Hello", and tell you to get the hell out because she don't know who you are a moment later?
That's Alzheimer's. You can be helping to manage her most intimate financial affairs completely honestly, you can be doing her laundry and getting her medicine and bringing her groceries and cooking her meals and washing her dishes and vacuuming her floors and helping her get to the doctor and even wiping her ass, when she cannot do it herself anymore, and yet she'll still tell you she loves you one night, and the next morning she wants you to go away, go to hell, or just please, please take her home. Because she doesn't know what home means anymore. She's already at home, and she doesn't know who you are anymore.
She knows what she knew in 1920 or 1930 sometimes, funny stories she can still tell sometimes, but she mixes up everyone's names; she doesn't know who is who anymore. She used to speak three languages, English, German, and French. But now she often speaks gibberish, a weird combination of whatever words she still can recall. She can't always understand simple sentences. She's like a kid who cannot learn.
Alzheimer's sucks; nursing homes suck. Go visit one someday if you doubt me. My grandmother's genes and her circumstances allowed her to outlive two of her children. She never got cancer, but that's what killed her elder son at 50. She had a heart attack thirty years ago, but she didn't die of heart disease. That's what killed her elder daughter at 60. Yet my grandmother lives on, as her mind slowly disintegrates.
She still likes to watch children playing, or to meet a drooling baby, maybe a child of someone who helps care for her, brought over to visit. She still likes to pet her cats and smile and watch them roll on the floor with catnip at her feet, she still can interface with her two grandchildren, she still has a sense of humor that we all can understand and sometimes laugh about together.
She doesn't know what year it is or what day it is, and sometimes she can't remember how to properly hold a spoon (or she'll try drinking from it like a straw). But she especially likes bananas and squash and sweet potatoes and chocolate chip cookies. I know this because I'm there sometimes to remind her to take another bite. She says "This is good, thank you!"
And sometimes when you help lift her into bed at night, she'll tell you she loves you. I guess that helps make it all worthwhile.
Anyway, this is what will happen to you if you don't die of anything else or get hit by a bus before your brain starts to degrade. I suppose it hasn't been all bad, I have learned a lot caring for my grandmother. But she is no longer able to offer her opinion.
it's a blue bright blue Saturday hey hey
So even if there are moral considerations regarding culling bad genes with abortion there has to be considerations with impact for humankind as a whole or the human race will degenerate in the end. This doesn't mean that any gene defect that is detected should be cause for termination, but there are known defects that can be detected early and are causing conditions that are either terminal early in life or causing an individual to rely on others for survival.
Of course - there are also the dualistic genes where a gene may be a survival feature as well as a limitation. One such gene is protection against malaria if it's present in one chromosome but if it's present in both chromosomes it's instead a fatal blood disease. Anyway the real culprit here is malaria, so eradication of that disease should be a more useful goal.
The interesting thing with genes like the gene for Huntington's Disease and some forms of cancer is the fact that they are triggered late in life. This means that they aren't culled by the usual darwinistic rules and therefore has to be caught by other methods.
And genetic engineering of humans are actually possible today or in the near future - the worries about "superhumans" and things like that are usually exaggerated. Of course - the crafted being will be "superhuman" in the way that it lacks the bad genes that were cut out. Adding "super"-genes to make a human more powerful or get features that aren't human-like etc. is actually a lot more complicated and risky.
If builders built buildings the way programmers wrote programs, then the first woodpecker would destroy civilization.
If you know that you are going to die within the next 5 years, it doesn't mean that you are going to die. When we learn about genes, it does not only give us the tools to know that we are going to die, it also gives the tools to prevent it from happening.
From the article:
But Ms. Moser bristled at the idea that she should have to remain ignorant about her genetic status to avoid discrimination. "I didn't do anything wrong," she said. "It's not like telling people I'm a drug addict."
Its ironic how she goes off through the whole article about how people look at her unfairly, like she has done something wrong. She goes off about how its not her faults and that it is a medical condition and people should understand that. Then she goes an accuses drug addicts of being the people who REALLY deserve the negative attention.
Drug addiction is a disease that is often caused by a set of genes. She is responible for the same discrimination that she feels is wrong. She doesn't realize that drug addicts are just as helpless to avoid onset of their symptoms as someone with Huntington's Disease.
It's bitter irony but it makes me angry to read it. Sometimes it seems like everyone thinks they are special and different and the rules don't apply to them.
unzip; strip; touch; finger; mount; fsck; more; yes; unmount; sleep