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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."
We're all going to die sometime
let me know when something can be done about these genetic defects.
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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I find it amusing that you can put a dusty old woman in a jangling dress with a crystal ball, a little golden pyramid, and a chart of constellations on the wall, and people will give up their money to "have their fortune told," but offer to do it for real and they step back.
It's a cultural problem that people aren't brought up to take control of their lives to the extent they can, and leave the remainder to fate, under the name of whatever diety you think looks coolest on your lunch box.
Risking the chance of sounding like a Tyler Durden or John "Jigsaw" Kramer, a fear of knowing one's fate is a true cowardise that has troubled humanity for ages. Faced with one's mortality, humans will avert their eyes in ignorance, fall to their knees in prayer, or just bawl like infants far more frequently than they will take a breath, think of a plan to make use of their life, and strive toward a goal.
This makes sense, when you remember that a large amount of the population, told they have 1% of their lifetime remaining, will look back at the past 99% being sunk into wastetimes like watching American Idol, arguing with potential life-mates over use of hand towels, and choosing for or against the strinne-green sofa. You only notice the time you've wasted when you look at the clock.
Does anyone else see the phenomal potential for misuse of technologies like this? Its not just insurance companies. What about college admissions tests? Driver licensing? Job applications? Maybe I've just seen Gattaca one too many times...
I'll try anything once. Twice if it's DRM free.
As someone who has both high bloodpressure and hear attacks that keep killing family males at a young age (correctable with surgery) running in the family, I'm fairly certain that I will too have the same problems at some point in life (high bloodpressure already). Granted, both of these can be treated unlike any terminal disease, but 10-15 years ago open heart surgery was not a piece of cake even though the success rate is higher now but still it is something that has always been in the back of my head and I've learned to live with it. At some point I just decided that I'm going to live life as I would as any other normal person until such a time that I either drop dead someday or until I die of old age.
Medicine as a science is evolving sometimes fast, sometimes slow and perhaps there is someday a treatment for terminal disease x or y that we do not have today.
I agree. I also find it rather strange that things like these aren't really out there in public discussion. Very soon our scientists will have the means to modify and replace "unwanted" genes. While hardcore religous types may or may not have a point when they say don't mess with our genes/embryos or the creation (though it's arguable that we have done the latter ever since we used our brains to survive), it is not being discussed "what" ethical points these may be. Ethics are there for a reason, but their rules need to be put through rational analysis to determine whether they hold up and have a function or are simply outdated. What needs to be considered as well is that other countries (e.g. Korea or China) don't see the same ethical problems arising when "messing with the creation". So they'll go ahead with research no matter what unless a universal consensus not based on religion is found.
So we need to ask ourselves a few questions. What are the rational implications to eugenics? Is it ok to "just let it happen", just let the scientists do their work in the name of improving our gene pool by finding techniques to eliminate "undesireble genes? WHAT are undesirable genes? Will it lead to a society of morally inept people? Plastic surgery, once decried as weakness of character and senseless vanity of rich people is now becoming main stream in many circles of the high society - who says that this will not happen with 'cosmetic genetics', and furthermore will this not lead to more imbalance and cause strong resentment between those who can afford it and those who can't?
And when you gaze long enough into the code, the code will also gaze into you.
Under that system, the optimal strategy is to know *nothing* about your health. Don't have any tests taken, and especially don't talk to your parents or other family about their medical history. That way you can honestly say you know of no medical issues you may have. This is of course bad for everyone involved. You can't seek preventative medical care, and end up costing the insurance provider more.
Yet another example of a problem a free market cannot solve.
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.
Relatively as compared to Down syndrome, cystic fibrosis, Tay-Sachs, and other genetic conditions which manifest in the first few years of life, if not at birth.
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.
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.
Interesting point - in the article, a therapist tells Ms. Moser that it would be unethical for her to have kids. This makes her very upset, understandably. But is he/she right? If you know that any children of yours are likely to have a short life and a protracted, horrible death, is it wrong to reproduce?
I tend to think it is, but that's me.
I'm the stranger...posting to
One issue that I've never seen discussed is whether it's possible to get these tests done anonymously, with the payment made in cash. Though spending a $1000 of my own money would be hard, I'd do it as long as the information could never get into the hands of any insurance company or future employer.
My personal test for HD is as follows
is it 16:9?
is it 720p or better?
If history repeats itself, why can't we study the future?
Human Ethics is going to need a MAJOR overhaul to deal with possibilities of genetic research.
I am all for improving/fixing the human condition and the elimination of all diseases from the human genetic tree.
But what exactly does that mean?
I would like to remind everyone:
1) Right now, at this very moment in fine boards rooms with leather covered chairs the conversation inside drug company board rooms is not very pleasant: How do we best make money off of peoples misery.
OUR misery.
2) These discussions are normally about how NOT to make cures and how to spread out research and development so that cures do not destroy "market potential" or profit margins. More to the point, how can we understand the problem in the context of a "subscription" medication so that if anyone does make a product from the disease, the individual has to continually buy the product to maximize profit stability.
3) I am not even going to get into the ethics of patenting medical procedures for profit or what it means if you cannot get treatment because of a patent problem. People with half a brain should understand the full impact of such a sick system that could only be fashioned from the finest human greed the human mind can envision.
Make no doubt, we have the finest medical/patent science system in the United State of America that human greed can fashion.
Quite frankly I do not see a way to curb the problem of human misery or to break this cycle as long as medical science and research can only be accomplished for profit.
The entire premise, that medical science cannot advance without payment from the victims of disease speaks VOLUMEs about how pathetic we are as human beings:
a) How we respect each other.
b) How compassionate we are.
I see a very BLEAK and very DARK medical treatment future for the vast majority of human beings far into the future.
I love the ability to pursue knowledge, but these kinds of knowledge we are obtaining for private use with regards to genetics makes it quite clear we are not ready.
We have some "house cleaning" to do with respect to points A and B first. I love science, but I would enact a law forbidding further advance of gentic research REQUIRING we work out A and B first before continuing.
Some ways to fix this:
1) Make it illegal for privitization of any sort of medical research.
2) Form a world wide medical research establishment dedicated to the elimination of the top 10 human afflictions, with neurological and systemic diseases such as cancer at the top of that list for massive funding, with all nations contributing materials required to do the research.
3) Form highly publicized media outlets and channels to scrutinize this work being done so that the general public is kept informed on the progress of cures for these diseases.
Any medical team or individual who comes up with such a cure shuld be treated as a "rock star" and a foot note should be made in the history books of this individuals name.
4) Make it a CRIME AGAINST HUMANITY for any group or individuals to use such information in the development of a weapons system, or to block the progress or spirit of research to obtain cures for these conditions. Said court can take each case by cause and effect and pass judgement as agreed.
Anyone caught dealing with a Bio Weapon should be terminated with the weapon they built.
A fitting end for a mad man and his lifes work IMHO.
5) Allow the deomcratization of science for this institution with scientists running for office at such institution with elections held world wide.
# 5 is something we could do to make science more of a daily discussion and much more political. We have too many private PhD's hidden away with no guidance.
Society MUST take control of science and make it a informed and political activity.
It CERTAINLY isn't that way right now and it gives me the "Willies" these people are not under some sort of par
Got Geometrodynamics? Awe, too hard to figure out? Too bad.
Just post your DNA AC.
There's a saying in spanish regarding unfaithfulness: "Lo que los ojos no ven, el corazon no siente", meaning that if you don't see/know it (the fact that your partner is being unfaithful), your heart wont feel it, so i guess it's basically like "ignorance is bliss", but more to-the-point.
I do understand why people would like to live in a state of ignorance regarding 'the truth', regarding their own fate - i think it's very similar to taking drugs. Sure, you're happy and all, and that's nice, but it's not 'real' happiness. As soon as you know that you may be fooling yourself, it might still work, but you'd still feel as if you'd be missing something.
I think that this is because society simply isn't ready yet for sincerity: when someone is unfaithful, you're supposed to go crazy, instead of talk about it and look into yourself whether you can live with that. If you know you're going to die in a nasty way in a couple of years (like in the FA), society rewards you if you don't tell anyone (insurance policies, dating, etc.). If you know you don't know something when somebody ask you something, most people respect you MORE if you just talk your way out of it instead of actually admitting that you don't know. All this, even though most people I know, once you confront them wit this, will readily admit that it doesn't make any sense, and that our supposedly enlightened society should be open about stuff like that, and actually value sincerity and openness instead of the more globally ineffective hypocrisy that most people seem to be living. Why is that?
In the end, it all comes down to quality of life. Existence, in and of itself, isn't sufficient, although some would say it is. Our society (like most other "civilized" cultures) hasn't really figured out how to deal with people suffering unending pain and misery. Is shooting them in the head the answer? Some would say so ... but that's rather uncivilized at best, and rather brutal by our standards. Of course, there's always euthanasia, but everyone's afraid that, should that practice become legal and popular that they'll be put down before they're ready, because most of us aren't in control of our own destinies at the end. That's a justifiable fear, I might add: I've seen it happen. There's less respect for life in our medical system than the people that run it would like you to believe.
... at one point he said to me, "I think I should go off the dialysis". That would have meant a coma, and death. It's an easy way out, because they cannot force treatment on you: you only have to refuse it and die.
There reality is that there are no simple solutions that are compatible with American law, and tradition, and our belief in the value of human life (and yes, I know that we mow each other down by the thousands in cars every day.) There really aren't, and that's the problem.
A couple of years before my father died (he had diabetes mellitus, with a capital "D") he was on peritoneal dialysis due to total renal failure, in constant severe neuropathic pain until they put him on Dilaudid, suffered multiple strokes and heart attacks
If I had to go through it again, I wouldn't have talked him out of it. That was selfish of me, although I didn't understand that at the time. You live and you learn.
The higher the technology, the sharper that two-edged sword.