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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.
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.
So you know whether or not to bother with a 401k.
Does this sig remind you of Agatha Christie?
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 didn't want to mention it to avoid seeming a troll, but there is one other VERY important thing that Star Trek predicts: The removal of religion from society. Even though characters were spiritual, and expressed morals that are mostly in alignment with religion in general, there was AFAIK no religion that Federation citizens practiced.
Without religion, half if not more IMO, of the 'secret agendas' that people have will simply disappear.
Just a thought
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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.
From AC to AC, a person I love deeply just found out that she has a degenerative disease.She can choose to fight an uphill and expensive battle for her life with the small hope that she will squeeze more years in this planet, or she can just take the course of action that you described. She is a real person. Once I got past the dehumanizing anonymity of some random news and saw this happening to somebody I care about, I know that its not so simple. Most people want to live. And most people want their friends and family to live. I'm glad she chose to fight.
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.
How can medical insurance work if there is no unpredictability in when people get sick?
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.
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.
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.
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.
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.
The law of unintended consequences is waiting for you... First and foremost, define "bad genes". How about the set of brain chemistry differences clustering around autism, Ausperger's disease, &c? They're generally considered as treatment-worthy defects in modern first world society, because a kid with even a touch of this stuff is not going to be a popular team player. For that matter, what about the current fad for ADD, ADHD, Hyperactivity, or whatever else you want to call "not fitting into a regimented classroom environment"?
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.
"Nothing was broken, and it's been fixed." -- Jon Carroll
I think the point here is that there is no measurable shortage of people in this world. We already have 6,000,000,000 specimen of cousciousness here, and hundreds more are born every second.
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?