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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.
She should buy a shotgun and put it away. Then she should live her life to the fullest and not bother to save for retirement. When the disease strikes her (the article said it would hit her in middle age) she should blow her brains out and avoid the years of suffering that will inevitably lead up to her painful death.
Some may say this is a harsh course of action, but I defy anyone to come up with a better solution to her predicament.
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.
Without viable treatment options for many genetic disorders, why subject yourself to such a test in the first place? What do you gain in knowing your possible fate?
Can someone explain this to me?
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.
She suggested that I should get tested for it, but I chose not to, because the condition usually hits earlier in life, and I have not seen any symptoms so it is quite unlikely that I have it.
Development of treatment for diseases such as this are on the horizon. Already, enormous progress is being made in the treatment of many related diseases using monoclonal antibodies. I can only hope that this disease is one of them. As it is, Multiple Sclerosis is finally being treated with remarkable success, Tysabri. Alzheimer's may soon follow. With enough research, Huntington's may be next.
"To those who are overly cautious, everything is impossible. "
If you're not crippled by a fatal birth defect, GTFO!
/obligatory GATTACCA reference =D
"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."
What do you mean "relatively late"? 37 or 40 is pretty damned early if you ask me.
--
BMO
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 have heard that the planet supports about a billion people well, and after that resources become a problem. We're past 4 billion and still climbing. Should we cure terminal diseases and have a large population of people who aren't able to give any labor back... well, I think you get the image. Perhaps curing diseases that affect us in later years, after we've lived a full life, isn't in the best interest of our children who will have to support us.
Before you all flame, let it be known that I come from a family with a VERY high rate of cancer, and in later years it's very possible for it to be a bullet with my name written on it. Alright, flame on.
If I mod you up, it doesn't necessarily mean I agree with what you've said, sorry.
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.
Are all PC users such prudish, uptight squares? I bet you've only ever had sex in the missionary position.
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.
Spread awareness about your condition, donate hundreds of millions of dollars to research, change your major to medicine...
I don't know, I think I'd have to agree that licking those particular feet is a pretty disgusting thing to do.
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.
...in the health insurance industry? Do I see GATTACA around the corner?
"In the not-too distant future"
Maybe, but at least it was with a woman.
We should have thought about that back in the early ninties. Some people were aware of it at that time; i remember that becaus i did some literature research (in 1992) for writing an article in our schools pupils magazine about genetic technology. Even at that time i found it obvious that the primary danger is not our ability to modify the gonom but to read it out. I been scared since that time about the careless discuccion in the public. It is true, we have to develop an ethical code on that. For example, insurances should not be allowed to make mandatory genetical tests; however perosns who did genetical tests should share the results with the insurances. That's very simple. If I know that I am going to have cancer and I am making an insurance, it is no risk any more. On the other hand, one should discuss that the increased "genetically inherited" risk is taken over by the state. So I think insurances should mandatory offer an plan for anybody and openly caclulate the fraction of that plan attributed to genetic disposition, which i suggest should be compensated for from either tax money or another (mandatory) insurance (macroeconolically both possibilitis are different tastes of the same thing!).
In that way, everybody could choose:
* not know your risk and be insured at an fair rate
* know your risk and be insured at either a higher or lower rate, in the first case the state would pay the difference
The insurances
* Could use their conventional mathematics a the same fractions of uncertainity
* Could try to lower the overall costs by taking preventive measures.
If you think that the thought of anyone licking those hairy, nasty hippie feet is in the least bit erotic, then I'm more than happy with being a "prude" in your mind. There's good dirty and bad dirty. That, my fapping young virgin, is bad dirty all the way.
And only ever with women. All the straitlaced linear thinkers of the world must be so proud.
Or should the above read:
And what about conditions which may have "complications". Say, you have a chronic but mild infection (which is being treated), and you subscribe an insurance plan. The insurance will obviously deny you payment for the treatment of that infection. Now, what if the infection suddenly enters an acute phase and becomes worse and more expensive? Can the insurer still deny you payment, or is the "complication" considered to be a new condition?
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.
While ignorance in some areas of life is bliss --- its not so when it comes to your life and how you live it.
:-/
On a routine physical at age 48 I learned I had a rare blood cancer ( rate is about 3 - 5 people per million) and had I gone much longer without treatment I'd either be dead now or typing this in some strange way after surviving a massive stroke. There is no known cure for my disease.
Yeah learning about a genetic condition or cancer - etc. is a real buzz-kill --- but it allows you to start making choices for your life for the better and living your life more focused on whats important to you and your family.
Remember - nobody gets out of here alive
Its not the years, its the mileage
http://imdb.com/title/tt0119177/ INVALID
http://www.rense.com/general79/wdx1.htm
In fact, there IS something significant this community (and others) can do: help with the folding@home project. All of that spare hardware laying around could speed finding cures. I'm going to resurrect some machines just for the cause.
... hope and the motivation to do something. If Bill Gates, Steve Jobs or anyone else with money or power happen to get something without any "viable treatment", they might (oh I don't know) donate fuck loads of money, resources and what ever time they have left to find a cure. Just because there's no "viable treatment" NOW doesn't meant there wont be. If I knew I had something where there was no treatment. I would save as much money as I can and maybe wait for a cure (that's if I'm still alive) and use the saved up money on that. I might also write a will to have my body and money donated to science. You know, maybe help others out when I'm gone. The word here being HOPE! Most people don't know when they're going to die, but if you did you could find a way to use it to your advantage or stop it from happening. But if you want to stick your head between your legs and think of your self, you can do that. ;-)
Point being, fear of anything is a strong motivator to do something about it. With out fear, hope, motivation or any thing else that makes us human, we would all just die sitting on our sofa's wondering what's on the next American Idol while not doing anything to advance the human race. Choices we make now have ripple affects even after we're dead. Just something to think about.
I was born with agenesis corpus callosum, rare congenital disorder. It was dfiagnosed when I was 32. I have master's degree in cs. I live normal life. What's the point in this story? Someone is ill and they study his/her life. They can pay me 100000000000000000000usd ja study my life as well.
You just passed with flying colors.
I have that along with my P&C and my Series 7 & 63. A life agent license will make you moderately rich. Add P&C to that and you're drowning in dough, and every financial employer wants you. Add a Series 6 or 7 to that and palm branches will be laid at your feet as you walk down the street (though you need a sponsor for the 7 and probably for the 6).
If you haven't done it yet, do it now before the out of work biotech and IT people see this and bum rush the industry (and drive competition for clients through the roof).
--- Grow a pair, liberals... stop letting the Republicans bully you!
One issue that frequently crops up with testing for HD is confidentiality.
As it is an autosomal dominant condition, with no cure and little in the way of treatment, by testing oneself, one is also indirectly testing one's parents and/or children. If you test positive, then you know that either your mother or father must be positive too. In the majority of cases, the parent(s) already know, but there are cases where parents of patients have not wanted to know.
Whilst this is true of any autosomal dominant inherited condition, it is a particular issue in Huntingdon's due to the nature of the disease which is why in the UK, best practice is to not only get the consent of the patient, but also the patient's parents and children (if they're old enough).
Not a member of the General Public
Slight correction - where I state "student drivers have apparently never seen cars before", it should read "college drivers have never seen bikes before".
Isn't insomnia wonderful? Side effects of a really high metabolism may include insanely high resistance to drugs. Not only do I need really high doses of drugs, but most of the time they don't even work. Oh well, at least I can take comfort in the fact that I pay for them myself, rather than being a leech on those around me.
Do you buy any good in such a way? The costs of your trea tment do not effect your consumption, and this is why costs spiral.
* Know your risks
* Don't tell the insurance
I see that as the best way to deal with the situation.
Got Crohn's disease, which is pretty rare, and sometimes lethal, too. My Dr. suggested that I take some medicine (Purinethol - 6MP) that's probably help me feel better, but might cause cancel in the long run. I took it. My reasoning was that I better have a better life now and worry about cancel later, plus with cencer becoming so "popular" recently, they'll probably come up with a cure to it before they come up with a cure to Crohn's. 10 years later, I'm still alive and kicking, although I learn new things about Crohn's all the time... like the linkage to arthritis (which might prevent me from blowing my head off when the time comes, as someone suggested above).
Umm no. Only those that take a test have to face it. The rest of us, wont.
---- Booth was a patriot ----
The idea that contracts can ever be perfectly enforced is hilarious. It's up there with the idea that markets consist of rational actors. That capitalism is based on those ideas proves that it can never be stable without intervention.
Stupidity in the extreme coming along later in life. Has to be genetic.
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.
People with ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrigs disease) usually die when their diaphragm and chest wall muscles are too weak to provide force for breathing. Roughly 1/2 die in the first year after diagnosis, and the remaining 50% exhibit a mortality curve with a long, scewed tail. About 1 in 5 survive 5 years and 1 in 10 survive 10 years.
Having said that, Sir(?) Hawking probably has many resources not cheaply available to most - 24 hr nursing care so he doesn't get bed sores, etc.
It's hard to make blanket statements about genetic diseases, since the morbidity and mortality vary so much. But in general, the more information you have about it, will let you make your choices more rationally.
..........FULL STOP.
Wait, so I can take a test that will let me if I'm ever going to die? If I find out I might die one day, I'll surely start living my life differently.
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.
I cannot understand how anyone could really not want to know. I cannot even imagine being like that. Intentionally living in ignorance. Including all of the consequences to other peoples lives. Spreading the pain and misery as a result.
My mother had a serious disease with a genetic component. As a child I was aware that I had something like a 7% chance of ending up with the disease. It is now statistically unlikely (but still possible) that I will develop it. I always told myself that if I saw the initial signs I would kill myself before the hell began, after which it might be too late to take such drastic action. As it turned out it hit my sister instead and she killed herself because of it. I wasn't aware of any pact she had with herself to do so, but she was aware of my own. She did not leave a note so it is impossible to know for sure what her reasons were.
I don't like children. But even if I did I would not allow myself to have one. Seems irresponsible, even immoral. That didn't stop my sister from having one though. I guess different people have different ideas of 'responsibility'.
The only reason I could think of not to get tested would be with respect to insurance companies. For that reason I don't think I would want to get tested in the US. I would go to Thailand or Argentina or someplace to get tested instead. Then at least I would have the choice of whether to inform the insurance company or not. If you required treatment the insurance company would find out about it eventually anyway, but you would at least be in the same position (wrt insurance) as those who chose to remain ignorant. I think it would still qualify as insurance fraud, but if done cautiously (perhaps even under an assumed name, and preferably in a country where few people speak English) at least you could probably get away with it. Or alternatively, could you not just make sure you are with a good insurance company (that you can remain with for life) for at least a year before getting tested? Even good companies can go out of business or be bought out however. So getting the test done abroad may still be preferable. Although, again, if you end up getting treated for the condition it won't matter either way.
Quite an experience to live in fear, isn't it? That's what it is to be a slave.
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.
Its the best biomarker out there, despite OJ.
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?
At the moment, you're better off "investing" in a new sports car or computer, you will make a better profit off them than that new home.
The problem with this is that if you don't buy and own your own home you are renting from someone else in which case you are paying their morgage plus profits. And unless you were foolish and got an ARM, Adjustable Rate Mrogage, or some short term morgages like ballon morgages your morgage payment stays the same however rent goes up.
Factor in the interest paid over the life of the loan
Interest paid on your morgage is tax deducable.
the opportunity cost from not investing that money in something that earns interest.
A home is an investment, it's an investment in the future. And because rent rises in the long term you pay less for housing. Also if your home is bigger than you need and you've got a bedroom you don't need then you can rent it out and make more money. Currently I rent an apartment, from my sister. The apartment is one of four in a house that was converted to apartments and the plan right now is that when my sister has built up enough equity in the building she will sale it to me. I can then pay the morgage from the rent I collect and have some left over to invest or spend myself. And I will invest it.
and don't count the 2004-2005 years when people went nuts and drove up prices without a shift in the factors which should determine the price.
Obviously timing makes a hell of a big difference. If there is a real estate boom it is wise to go ahead and rent while waiting for the boom to crash. But then once it has crashed go ahead and buy as long as the area still makes economic sense to stay in, for instance how does the employment n the area look? Are jobs being lost. are they being created, or is it stagnat? And how does the pay for jobs look?
Sure it's easy to look at the real estate boom then crash some areas have had but that's only part of the story.
FalconShould there be a Law?
But there are lots of things that are enjoyable and not bad for you. For instance, last weekend I was invited to a thing where a bunch of people gather out on a beautiful farm in the country and fire off model rockets.
Gosh, 30 years ago I did this, built and launched model rockets, mostly Estes or Centauries. In today's security driven society I'd be wary of buying the kits and engines, Ds, never mind launching them.
FalconShould there be a Law?
I don't know about you, if you've been been in such a situation, but I can emphatically say I'd rather be ignorant to my situation than aware of it like I am. I am a survivor of a Traumatic Brain Injury, TBI I suffered when I was hit by a moving van while riding my bike after classes in college. I was a Computer Engineering major, however because of my injury my memory is bad. While I recall many things others I don't. For instance while in rehab I tried to do a simple physics exercise any first semester student should be able to do after a few weeks but I couldn't do it. Next I tried a simple one variable integral and I couldn't do it either. Eventually I was able to start taking classes again however it didn't take long before I found out it was hard for me to remember something from class just a few weeks earlier. I'd take the first semester class in a sequence like Java then a few weeks later when the second semester class started it would be a struggle for me to recall what I learned during the first semester. I used to have pretty good memory but not now. I had dreams of what I wanted to do but now I don't think I could ever achieve them. I'd rather be ignorant of this than to know it.
FalconShould there be a Law?
Why can't it? It's trivially obvious that it's more expensive, on average, to have insurance than to pay costs out of pocket because the insurance companies have to profit somehow. However, most of us can't possibly afford the worst-case medical bills that could arise and be covered by insurance if we were unlucky enough to need it.
This is exactly why I believe medical accounts should be available for workers, taxpayers, to cover the cost of routine health care cost then have catastrophic coverage for other things. One reason healthcare cost are high is because of insurance and paperwork. If people were to pay for thier own healthcare they'd pay much more attention to the costs, and all of those people working on that paperwork has to be paid as well.
FalconShould there be a Law?
Darwinian rules still apply when you're 59 or 60. You're affecting your descendants with whatever diseases you develop. My godmother's mother developed Alzheimer. Taking care of her took all the free time my godmother used to have, which is probably one of the causes she got a husband late in life, too late to have children. This means she won't have any kids. Natural selection.
The AACS key is NOT 0xF606EEFD628B1CA427BEA93A9CA9773F
Congratulations, you have just qualified to be a Republican pundit. Lack of reading comprehension is the first required trait, intolerance of others' weaknesses is the second.
Start drinking heavily now, and with the onset of Korsakov's, you'll be qualified to hold high office as a "family values" conservative!
Most of the world (and all of the developed world) uses a limited market system; allow the market to give it a go, and step in with regulations where it doesn't work.
That's not the definition of "rational" used in economics. If people were rational economic actors, advertising would be ineffective.
My wife recently discovered she is a carrier for ALD (if you've seen the movie Lorenzo's Oil, its the same condition the boy suffered from).
ALD affects the mylene sheaf of the nerves. Childhood form causes brain degeneration; adult causes loss of motor skills.
Girls carry the gene, boys get affected by the gene (and rarely the girls). Boys are lucky to live to reach their teens. If they don't get the childhood form and die around age 12-14, they can get the adult form and end up in a wheelchair.
Why am I glad my wife got the genetic test? We are planning on having kids soon. Watching your son die after only a few short years on this planet would be heartbreaking.
We are now looking at IVF, then using sex selection to ensure we have girls. We have investigated Preimplantation Genetic Diagnosis, but the tests aren't that advanced for this condition.
Knowing upfront allows you to make better decisions about the future.
Did anyone else find it odd that the woman in the article had more repeats than her grandfather?
-John Fenley
I see your informative link, and raise you a pithy comment.
Just say "No" to Huntingtons.
Nancy Reagan's plan is working for all those drug addicts, so it will probably work for Huntington's, too!
Giving life to a new consciousness is the best gift receivable.
Without it, maybe you don't have some disease, but you also don't exist.
I do not think you have any children, just because you don't seem to understand how much anguish a parent will have at the life of their child cut short. NOBODY knows this until they have their own. Still, it's better to give them some life and love than none at all. No parent should ever have to see their child die. (I learned this from my Grandmother, who outlived my father by two decades)
"Make it illegal for privitization of any sort of medical research." I commend you for your compassion, but this type of statement shows that you don't understand how the world actually works. The development of new medical procedures and drugs flourishes in our country precisely because of human greed and our willingness to harness it in the USA. There is perhaps no greater motivating factor in the long-term. Otherwise socialism might have a prayer.
Sure, with the growth of computer tech and early dna sequencing nanotech, we are getting to the point where it will cost a couple of hundred bucks and take a day or so to sequence youor own geneome and find ou all the nasty things hiding there. But wait!!, the same advances will give us the ability to develop nanobots that can get inside our cells and manipulate the dna/rna and protien structures, essentially giving us the eventual ability to fix anything wrong in the cell, clean up the "gunk" that aging generates, replace old worn out dna, mitochondria etc, basiclly reverse and eliminate aging. (check out www.mprize.org www.sens.org www.longevitymeme.org http://www.kurzweilai.net/index.html?flash=1 http://www.imminst.org/ also: MIT biobricks http://parts.mit.edu/registry/index.php/Main_Page
What we need is the ability to stop waging usless wars and reduce the worldwide spending of 1000 billion on war materials and take 100 million to 1 billion dollars and put it into the mprize to reverse aging in mice models and then human models (we need to finance what scientists are calling for is an mahatten sized project to cure aging and eliminate cancers, diseases by getting down to the dna level and letting loose the engineers to revers engineer the human animal and fix this thing called aging. We are now getting the tools to manipulate matter at the atomic lelvel (cpu chips are a good example), we now need to open up the dna universe to hacking (see also: MIT biobricks, its like making CAD logic designs (ttl/cmos) functions at atomic dna levels!)
Robert J. Sawyer dealt with this issue in his SF book Frameshift. An excellent read and I quite like his writing.
Vista:XPSP2::ME:98SE
A rational actor chooses the best possible product at all times. Not just the worst, even the second best is an irrational choice.
The existence of advertising proves that people are not rational actors. If people were rational actors, advertising would have no effect (rational actors have perfect knowledge of the economy, another fallacy). That it does exist proves that either those who purchase it or those who are influenced by it are not rational actors.