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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.
I just read a book recently called 'The Language Of God' by Francis S. Collins. He played no small part in mapping the human genome, and he discusses some of the implications of knowing that you are, or are not susceptible to particular maladies. His main concern was one of security as once you know that you are very susceptible to breast cancer the insurance companies can back out on you, or otherwise make the whole ordeal very nasty when/if it happens that you get the cancer.
The problem of not getting medical care because you knew you would get the disease is a real BIG problem. How can medical insurance work if there is no unpredictability in when people get sick? I think the basic conclusion that can be drawn from this and what Mr. Collins says: This is a good thing and can lead to much healthier people in general, but with the current system, it presents a whole plethora of opportunities for abuse and misconduct. So, it won't be a good thing until the current medical systems change to something more friendly to gene related therapies, treatment, and detection of disease/maladies.
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Usian health care is comparable to developing nations for people who can't pay for more than what's freely available. That's the only metric that has any meaning, as the rich can always travel to where the best care is available.
Your point is well taken generally though. When was Stephen Hawking supposed to be dead by? I know he was told ages ago that he just had a couple years to live... Dunno how great a quality of life he has atm, but apparently it's good enough he hasn't sought out someone to inject him with something funky.
Ah, there we go, wikipedia says: Diagnosis came when Hawking was 21, shortly before his first marriage, and doctors said he would not survive more than two or three years. Born: January 8, 1942 (age 65)
So yeah, he's been living for over 40 years since his predicted date of death. Good for him(and good for us for having benefitted from his work). My thinking that I'd be dead inside 10 years would probably change how I live my life right now. Or that I have a disease that I'll likely pass on to my kids for instance. Both would be good to know(for me). Probably shouldn't be compulsory to test people for everything under the sun and then tell them, but if they want it... *shrug*
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.
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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.
A factual statement would be more along the lines of "Most people who have died up until now are really dead, particularly those who have been cremated". There may be a hundred or so "dead" people currently in cryonic suspension. Anyone who follows information science and technology progress knows that the information in those individuals may be recoverable. The information on your hard drive isn't *really* gone until one drops it into a blast furnace (or uses equivalent means of explicitly erasing it). Just as there are now firms which specialize in data recovery from "dead" drives, there will be specialists in the future who will practice the reanimation of frozen brains or bodies or at least in the recovery of the information they contain and its restoration onto an alternate substrate. One might even envision possible paths for data recovery from embalmed or dessicated human brains. Unless one takes explicit measures (e.g. cremation or burial without embalming) to destroy the information content of a current human mind it is questionable whether someone who meets the clinical definition for "dead" is really in fact dead.
It used to be that once ones heart stopped beating one was considered "clinically dead". But that definition has changed over the years as our understanding of human physiology and biochemistry improved to the point where we could restart hearts.
If one accepts things like mind uploading and the technological singularity enabling things like the evolution of current human beings into "distributed replicated intelligences", then many people alive today might live trillions of years. Given that possibility an assertion that "We're *all* going to die sometime" is highly questionable.
Admittedly, I didn't read the article. (Par for the course!) That said, I assume the article is about the idea of how knowing that something is gonna happen before it happens can sorta suck, and has consequences. So what, I say, it's still better to know in advance than to find out after it's too late.
My girlfriend, who is only 32, has breast cancer. It's not early breast cancer either, it has spread through her right breast, likely into part of the left breast, into the lymph nodes, and they suspect it has migrated to her bones. This is Stage V. (We get to find out deffinitively on Tuesday.) If this all turns out to be true, we both get that warm fuzzy feeling knowing that she has slim chances of being alive 10 years down the road, and it's gonna take a full masectomy, chemo, radiation and hormone treatment to even get that far. Does that make us feel like shit? Sure as hell it does. Would we prefer to not know? Hell no, I want to know what time I have left to do things for her. She wants to know what time she has left to enjoy life, and to do somethig that has a meaning to her. It sucks big time, and it is very stressful, but I'm sure glad I found out today, rather than a few more years down the road when the doctor says "you're a gonner any day" and we freak out.
Depending on the genetical condition these DNA tests are showing, there could be 2 outcomes. In cases of diseases that can't be cured and are a sure life sentence, at least the patient has a chance to make something of their lives while they can. The notion of imminent death can really change someone's perspective on life and the world big time. But for other conditions, such as breast cancer, knowing you have a certain gene will allow you to routinely check something with a stronger focus. Like catching breast cancer when it's in Stage I, and complaining how the lumpectomy sucked, and chemo really sucks, rather than finding out in Stage V when you have a really big lump and going "Oh fuck..."
DNA testing a fetus is one thing, and I have mixed feelings about it, but testing YOURSELF is quite another. The results aren't gonna be pleasant for everyone, but I feel that a majority of people would be much happier being able to prepare for the innevitable. It's much, much better than suddenly having your life plans flushed down the toilet, along with those of your loved ones. Life terminating illnesses usually have a far reaching effect, much further than just the patient themself.
Yeah, it sucks being me today, and sucks even worse to know that I can't do jack shit about it. But I swear it sucks the most being my girlfriend, but would suck even more if she DIDN'T know.