Life with a Lethal Gene 279
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."
Ignorance is bliss (Score:4, Insightful)
yawn... (Score:4, Insightful)
Re:Ignorance is bliss (Score:5, Insightful)
I would also probably be bummed out for a while. But on a long enough scale, we are all dead.
Hey, a crystal ball! (Score:3, Insightful)
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.
Re:Without Treatment, Why Know? (Score:2, Insightful)
"Narrowing Discrimination Down to a Science" (Score:2, Insightful)
Re:Ignorance is bliss (Score:5, Insightful)
Re:Ignorance is bliss (Score:5, Insightful)
(BTW my
Right mindset (Score:3, Insightful)
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.
Re:This is a major issue... (Score:4, Insightful)
Without religion, half if not more IMO, of the 'secret agendas' that people have will simply disappear.
Just a thought
Genetics and Eugenics (Score:3, Insightful)
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?
Re:Ignorance is bliss (Score:3, Insightful)
If I knew I was only going to live another six months, you can damn well bet that I wouldn't be showing up for work on Monday. It's not that I dislike my job, precisely, but I don't go there for entertainment. There are a whole lot of other things I'd like to do that would by far take priority.
It's not a question of just going out and buying an expensive car, it's going out and doing all the things that I had planned on doing over the course of a lifetime, without the financial or logistical burden of actually feeding, clothing, and housing myself for the next 50-odd years.
Re:Simple solution (Score:1, Insightful)
Which is why insurance needs heavy regulation (Score:3, Insightful)
Yet another example of a problem a free market cannot solve.
Re:This is a major issue... (Score:3, Insightful)
Very few genetic factors are certain to cause some disease, most just increase the odds. This is actually one of the odder ones given just how exactly they can link death time to repeats of the sequence (ie: have x repeats you will die at age y plus minus a year).
Yet that is interesting in itself, life insurance will cost significantly more but there is no reason for companies to not give it at all. At the same time you won't need to put as much into retirement so it probably evens out. Health insurance is more interesting, it wouldn't matter if you're years away from expected death but close to it you'll have problems. Still it's not much different from a lot of other disease that are almost surely fatal (certain cancers, AIDS back in the day, etc.). You just know when you'll get it. Some form of long term insurance were the company is betting on a cure might work.
Re:What? (Score:2, Insightful)
Re:Ignorance is bliss (Score:5, Insightful)
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.
Re:Which is why insurance needs heavy regulation (Score:3, Insightful)
No, I'm not being particularly religious, but you must be either 20 or younger, or you've never had a disease in your life. It must be so wonderful to not have a chronic disease.
Insurance's purpose is to _spread the risk_. Once you get away from that, you may as well abolish insurance altogether. The thing is before we had health insurance the situation was worse than what we've got right now. Health problems basically bankrupted you then. Either that or you died.
If you're such a free-marketer, answer me this: How could I _ever_ become involved in starting my own business? I could _never_ get insurance due to a pre-existing condition. The only way for me to get it is to work for someone else. This particular fact is largely ignored by people who decry the Canadian system. However, if we had a Canadian type system (Single payor health insurance, like OHIP) I could open a business tomorrow and not worry about meds or hospital emergencies.
So you've got good health. That is only a temporary condition.
--
BMO
Re:Ignorance is bliss (Score:5, Insightful)
Re:Ignorance is bliss (Score:3, Insightful)
There are things that are long-term bad ideas but that are enjoyable in the short term.
Buying a sports car by neglecting to save for retirement isn't a good long-term idea. Smoking and getting cancer isn't a good long-term idea. Posting pictures of yourself drunk on the internet that future employers might see isn't a good long-term idea. Majoring in english literature isn't a good long-term idea (few job opportunities). Quitting your job to travel round the world isn't a good long-term idea.
Enjoying life isn't "doing everything that is bad for you" but long-term planning may involve denying oneself short-term pleasures. And if there's no long term, there's no need for long term planning, and no need to deny oneself short-term pleasures.
Re:Ignorance is bliss (Score:5, Insightful)
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.
having kids? (Score:4, Insightful)
I tend to think it is, but that's me.
Anonymous testing? (Score:3, Insightful)
Re:Ignorance is bliss (Score:3, Insightful)
That's a big "if". Sure, lots of people enjoy riding motorcycles, drinking, skydiving, and smoking (though hopefully not all at the same time), and there is nothing inherently wrong with taking some risks to enjoy life more. 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. If there weren't a burn ban in effect, there would've been a bonfire and fireworks as well. There was camping the night before and after, and there was a moon bounce for the kids. I didn't know most of the people, but everyone was friendly and fun to be around, and it was very beautiful out there, and we mostly just sat and chilled.
I can't think of anything bad for me (in any significant way) that happened on that day, but it was a great day, and I definitely went to sleep that night thinking I had really lived.
Human Ethics/Disease (Score:3, Insightful)
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
Re:having kids? (Score:4, Insightful)
Re:Ignorance is bliss (Score:1, Insightful)
"ignorance is bliss" is so pre-enlightment (Score:3, Insightful)
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?
Re:Simple solution (Score:4, Insightful)
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.
Re:Darwinistic application (Score:3, Insightful)
Richard Stallman, Nikolai Tesla, and Albert Einstein all fit the pattern in my non-medical opinion, not to mention Temple Grandin, who is diagnosed autistic. Would these people be who they are and do what they've done if their genes were tweaked, or their parents disallowed from breeding? Maybe what we call a disease is just a misunderstood variation which is necessary for social progress?
Regardless of whether different is better, maybe there's nothing wrong with it being different. They used to try to "fix" left-handed kids in my parent's generation, and homosexuality would land you in a mental institution a generation before that. Now the former looks like eugenetic insanity and the latter is confined to the radical-right fringes of society.
Re:Ignorance is bliss (Score:3, Insightful)
Re:giving life (Score:1, Insightful)
Rather than attempting to bring another defective creature into this world, why not adopt an orphan, or a snowflake baby, or feed some starving African kids, or some other thing like that?