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Life with a Lethal Gene 279

Posted by Zonk
from the choose-wisely dept.
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."
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Life with a Lethal Gene

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  • Ignorance is bliss (Score:4, Insightful)

    by kaufmanmoore (930593) on Sunday March 18, 2007 @01:29AM (#18392199)
    We're all going to die sometime
    • Indeed. Personally, I'd rather not know unless there's something I can do to prevent it. In this case, it seems like that's not the case.

      • by pchan- (118053) on Sunday March 18, 2007 @01:42AM (#18392259) Journal
        Why? If I knew I was going to die in 5 years, I wouldn't bother saving for retirement, or trying to get ahead in my career, or buying a house, or not getting that really nice sports car that I talked myself out of. I also wouldn't have any children if I would be passing on the disease to them, or just leaving them without a parent, for that matter.

        I would also probably be bummed out for a while. But on a long enough scale, we are all dead.
        • The problem is that you don't always know. There are tons of people that get diagnosed with fatal deceases every day. Some of them get better. There are studies that underline the importance of your mindset when fighting any severe illness and statistics show that people with a good disposition fare better than those that just lay down and take it or worse, get depressed and sink. Every person is different and your values may make choose what you said, other may choose to take provisions and preventive meas
          • Re: (Score:2, Interesting)

            by Kandenshi (832555)
            Indeed, you might pull through, but at least this way you can plan for it? Implement some specific changes to improve your quality of life/extend it for a while? Beyond the crap we're all supposed to be doing anyway :P

            Your point is well taken generally though. When was Stephen Hawking supposed to be dead by? I know he was told ages ago that he just had a couple years to live... Dunno how great a quality of life he has atm, but apparently it's good enough he hasn't sought out someone to inject him wi
            • 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 har
        • by dvice_null (981029) on Sunday March 18, 2007 @04:38AM (#18392909)
          If you know that you are going to die within the next 5 years, it doesn't mean that you are going to die. When we learn about genes, it does not only give us the tools to know that we are going to die, it also gives the tools to prevent it from happening.
          • by Qzukk (229616)
            When we learn about genes, it does not only give us the tools to know that we are going to die, it also gives the tools to prevent it from happening.

            So in other words, he shouldn't buy a house or start a family now, so he can save up to pay the thousands and thousands of dollars it will cost to save his life.
        • by nurb432 (527695)
          You could die tomrrow in a car accident.

          Knowing you have a terminal disease only really makes a difference if you are in a hospital. Outisde, your chances are the same as the rest of us for the most part. In 5 years, they might even find a cure for whatever you have.

          ( now, the not passing it along to kids arguement, thats a more valid debate )
        • by packeteer (566398) <packeteer@subdim ... ion.com minus pi> on Sunday March 18, 2007 @08:34AM (#18393517)
          From the article:
          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.
        • it would suck sharing the highways with people who know they are soon doomed
      • by Kadin2048 (468275)
        If you are literally living your life as if you might die in a handful of months, congratulations.

        I know I'm not. If I knew that I wasn't going to live to be 40, I'd be living quite differently. I sure wouldn't be squirreling money away into my IRA with quite the gusto I'm now doing it, for starters.
        • If you are literally living your life as if you might die in a handful of months, congratulations.

          I didn't say that, nor would it be necessary for me to feel the way I do. I think the feeling of impending doom and the realization that any of my plans involving more than a couple months are now useless would outweigh any short term benefits, such as driving around an expensive car for a few months (as the poster above mentioned).

          Would you truly prefer to drive $expensive_car with the knowledge that you'r

          • Re: (Score:3, Insightful)

            by Kadin2048 (468275)
            Ignorance is rarely bliss, at least in my opinion. A very large percentage of my, and I'd wager most people's, life, involves doing things that aren't precisely enjoyable for some future gain.

            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 ju
            • by Mad Merlin (837387) on Sunday March 18, 2007 @03:15AM (#18392645) Homepage

              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.

            • by feepness (543479)
              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.

              If I only had 6 months to live, missing work on Monday still wouldn't let me watch my daughter graduate from college.
            • by Reziac (43301) *
              Not only that, but if you know you're going to die of X, you can be on the lookout for ways to potentially stave off death-by-X. Maybe new research or treatments will come along that you'd have paid no attention to before you knew you were at 100% risk; now they'll get your attention, and perhaps even save your life.

              Of course then you're back to the daily grind, but ISTM that in most cases, that's still better than the alternative.

    • Not if you find enough 1ups.
    • by shokk (187512)
      Yes, but if you can find out what it is that you are predisposed to, you might not be cured, but you may be able to soften the blow for later in life. And it can help you plan - forget the 401K, save for the cremation - or go on a shooting rampage at work!

      Let's not forget that the cure can come later on, or knowing the predisposition may inspire someone to push for research on the cure.

      The future is that we will all have little XML files of our genome that we downloaded from mygenome.org after returning in
    • by bradbury (33372) <Robert...Bradbury@@@gmail...com> on Sunday March 18, 2007 @10:23AM (#18393965) Homepage
      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.
  • yawn... (Score:4, Insightful)

    by Dance_Dance_Karnov (793804) on Sunday March 18, 2007 @01:29AM (#18392201) Homepage
    let me know when something can be done about these genetic defects.
  • by Rix (54095) on Sunday March 18, 2007 @01:33AM (#18392223)
    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.
    • Re: (Score:3, Funny)

      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.

      Don't worry, the free market will sort it all out! I mean the free market is the reason America has the best system of health care in the world (and so cheaply). I mean, if one company refuses to insure you, you'll just be able to... oh wait.
    • Re: (Score:3, Informative)

      by Bob54321 (911744)
      Yes you would. Currently when going for health insurance you have to inform the company about all pre-existing conditions and even familial medical history. That way they can charge you the right amount relative to the risk they have of paying out. That is how insurance works. If you know you had a genetic defect, it will be required you tell them - you would expect a discount if you have tested negative so expect to pay more if you test positive. On the other hand, if you haven't been tested, and don'
      • 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.
        • by karmatic (776420)
          So why not just get the insurance, then get tested. If preventative care is cheaper for the insurance company, then the company should be willing to provide for it, since you are now their problem.

          As far as my insurance company goes, they do pay for some testing and preventative measures. Answer me this - why should an insurance company be required to accept people who are known risks (especially ones who choose to do so - smokers, etc.) More importantly, why should I pay higher premiums to cover them?
          • by Rix (54095)

            So why not just get the insurance, then get tested. If preventative care is cheaper for the insurance company, then the company should be willing to provide for it, since you are now their problem.

            Or the insurance company can "lose" your premium cheque, and cite non-payment as a reason to drop your policy. Never assume good faith on the part of insurance companies, it's a bad wager.

            why should an insurance company be required to accept people who are known risks (especially ones who choose to do so - smokers, etc.) More importantly, why should I pay higher premiums to cover them?

            Because that is the function of insurance; to spread uneven risk over a large group. If you don't like that, don't buy into an insurance collective in the first place.

            The free market "solution" is to charge him a crapload of money, or don't insure him.

            From the insurance companies position, you're right. From his position, the solution is to cover his ears and shout "I can't hear you" whenever anyone in

          • Re: (Score:3, Insightful)

            by bmo (77928)
            There but for the grace of God go you.

            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.

            I
            • by karmatic (776420)

              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.

              So, you're a selfish prick who has/will probably have huge medical bills, and the only way for you to compensate is to saddle your coworkers with the bill, since the insurance company isn't in a position to mitigate risk. Good for you.

              Insurance's purpose is to _spread the risk_. Once you get away from that, you may as well abolish insurance altogether.

              That's true. If you're uninsurable

              • 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.
              • by JohnFluxx (413620)
                > That's true. If you're uninsurable, it's because your risk is an order of magnitude larger than everyone else's. You aren't talking about spreading risk, but rather heaping your problems on everyone else.

                So? The point of a society is that the strong look after the weak.
              • by Qzukk (229616)
                Health Spending Accounts are a good way to accomplish hedging against risk

                Unless, of course, you don't get sick, in which case the company is allowed to take your money back. Great plan! I'm glad to see that Congress is working on a plan to allow you to roll over a whopping $500 to the next year.

                How about this: if I don't get sick and don't use my pay that I set-aside pre-tax, tax it and give my pay to me. The only difference between this and regular health insurance is that health insurance generally ha
        • I'll go one step farther. The medical insurance industry needs to not exist in it's present form. Unlike almost every other form of insurance everyone will need medical care at some point. The medical insurance industry is simply a giant bureaucracy intended to get money from healthier people and screw the ones that will actually need care. INSURING EVERYONE WILL NEVER, EVER BE PROFITABLE. Period. Not everyone will have a house burn down, but everyone will get sick.

          So you are right, the free
    • by ubernostrum (219442) on Sunday March 18, 2007 @02:36AM (#18392489) Homepage

      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 used to work at a health-insurance company (customer service and claims processing, it was my first job out of college), so I feel like I should point out that "pre-existing condition" is (in the US, at least) a phrase with a very precise legal definition, and doesn't include a lot of things people commonly think it does.

      If you seek out insurance as a private individual, then the prospective insurer can choose not to provide you with any coverage for pretty much any reason they like, and many will if you have an expensive ongoing condition, but group health plans offered through an employer are not permitted to deny coverage -- if insurance is offered to one employee in a given class (usually full-time employees), it must be offered to all employees in that class.

      Once you have coverage, there are strict laws regarding what claims may be denied due to pre-existing conditions, and when:

      • Once your coverage starts with an insurer, they can investigate claims to determine whether they are related to a pre-existing condition. In order to deny payment of a claim for a pre-existing condition, that specific condition must have been actively treated at some point during the six months immediately prior to the beginning of your coverage. "Active treatment" doesn't mean "diagnosed" or "mentioned", it means that a licensed medical practictioner was carrying out medical procedures and/or prescribing medication specifically for the treatment of that condition[1]. Treatment which took place more than six months prior to the beginning of coverage cannot be used as evidence of a pre-existing condition.
      • After twelve months with an insurer (or eighteen months if you're on a group plan and were a "late enrolee"), the insurer is no longer permitted to deny any claims due to pre-existing conditions.
      • If, prior to the beginning of your coverage with your current insurer, you had coverage with another insurer, and there was no period between the two in which you were uninsured or that period was less than 63 days long, then the time in which your new insurer can deny claims for pre-existing conditions is reduced by the length of time you had continuous coverage through your previous insurer. If your prior coverage was longer than 12 or 18 months (depending on your time of enrollment), then your new insurer is not permitted to deny claims for pre-existing conditions. To facilitate this, your previous insurer is required by law to provide you with a "certificate of creditable coverage" indicating the duration of your coverage with them.
      • Claims related to pregnancy can never be denied due to a pre-existing condition, regardless of circumstances.

      Additionally, many insurers won't bother investigating on claims where common sense says it wasn't a pre-existing condition; so, for example, if you accidentally slice your thumb while chopping onions for dinner, the insurer will probably go ahead and pay the claim. Any sort of sudden/acute onset condition or accidental illness/injury will usually get this treatment, because investigating pre-existing conditions is expensive and time-consuming, and it doesn't make any sense to waste time and money when you know how it'll turn out anyway.

      One of the biggest causes of misunderstanding is the insurer's investigation of a condition -- the claim will be put on hold, and the doctor or facility listed on the claim will be asked for records of treatment of that condition during the six-month "lookback" period, as well as information about any other doctors or facilities who may have treated the condition. If the insurer receives no response to those requests, then the insurer is permitted to initially deny the claim (any time there's insufficient information to determine benefits, an insurer can deny the claim un

      • In order to deny payment of a claim for a pre-existing condition, that specific condition must have been actively treated at some point during the six months immediately prior to the beginning of your coverage. "Active treatment" doesn't mean "diagnosed" or "mentioned", it means that a licensed medical practictioner was carrying out medical procedures and/or prescribing medication specifically for the treatment of that condition[1].

        Interesting. Doesn't this open the loophole that if somebody is uninsured and diagnosed with a condition (cancer, AIDS, ...) he tells his doctor to hold off treatment, subscribes an insurance, and then goes back to his doctor to start treatment. Sounds like a rather obvious loophole.

        Or should the above read: ...actively treated at some point during the period starting six months immediately prior to the beginning of your coverage until 12 or 18 month minus creditable coverage after beginning of your covera

        • If you have a medical condition, and that condition wasn't treated during the six months prior to the beginning of your coverage, then your insurer can't consider it "pre-existing". Setting aside the fact that it's just stupid to tell a doctor not to treat something so you can try to scam the insurance company, and that no doctor in his or her right mind would do that, most of the expensive ailments will either kill you or come close to killing you if you leave them that long, so don't even think about it.

      • 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 indus
        • Nah. I did my time in the bowels of the insurance industry, got out, and I don't plan on going back if I can avoid it. Once I had six months' expenses saved up, I quit and started up doing freelance web-dev, which is what I'd actually wanted to do (and which eventually got me the nice job I have now).

          The job itself wasn't so bad, and the money was decent for the area I was living in, but it's just not something that interests me; these days the only use I get out of it is helping friends and relations dec

  • by zappepcs (820751) on Sunday March 18, 2007 @01:35AM (#18392229) Journal
    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.
    • by linguizic (806996)
      I don't know much about the Canadian healthcare system, or any other socialized healthcare system, but from what I do understand, this shouldn't be a problem for them. I think in the long run this will lead to a collapse in the health insurance business and the USA will be forced to either go the nationalized or the individualized route. I hope to God that we don't go the individualized route.
      • by zappepcs (820751)
        Well, if Science Fiction is any predictor of what the future holds, Star Trek shows the world in a much better situation with healthcare for all, the elimination of the debt economy, and a basic change for betterment of both individuals and society.

        Current copyright, patent, and medical issues could conceivably turn out to be like Star Trek predicted. IMO, that is worth a lot of very deep thought!
        • by linguizic (806996)
          I think one of the things that Star Trek based it's vision of the future was teh idea that the more educated people are the more they will be willing to cooperate. I'm not sure if that's the case, I mean look at the resistance the social sciences are putting up to actually using real honest-to-god biological theory to explain human behavior. These are highly educated people who have some sort of agenda that gets in the way of real breakthroughs being made in understanding human beings. And I think when i
          • by zappepcs (820751) on Sunday March 18, 2007 @02:23AM (#18392445) Journal
            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
            • Not to mention that the conflict caused by the religion often formed the plot of the episode (and in the case of the Bajorans, defined an entire race)!

            • Dude, you have it backwards. Its people that have a priori agendas that turn religion into the disgusting mess that it gets turned into occasionally. Yes, occasionally, religion is not always Teh Eevol as its neither always the one-shop-salvation it aims to be. But religion is a very tasty morsel, a very convenient prepackaged delivery medium for ideas and that is the reason it is poisoned to infect "the people" with nasty notion. The general idea of religion is not so bad if you look at it: basically be in
            • Re: (Score:2, Interesting)

              by Chacham (981)
              Without religion, half if not more IMO, of the 'secret agendas' that people have will simply disappear.

              "Half if not more in my opinion", it is because you think religious people have secret agendas. So, i have a better idea. You should become religious yourself and then all of the secret agendas will simply disappear!
            • Re: (Score:3, Informative)

              by FooAtWFU (699187)
              Don't be silly. Star Trek still has plenty of religion:

              New Age mysticism: Oddly enough, while Christianity has apparently been wiped out, popular New Age ideas such as transcendental meditation, seances, tribal superstitions, pseudoscientific quasi-religions and Eastern spirituality are all acceptable in the Federation. This would seem rather contradictory until you ask yourself what kinds of spirituality are popular today in Hollywood. Apparently they don't believe that God made Man in his own image, but t

    • Re: (Score:3, Insightful)

      by Rakishi (759894)
      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 w
  • by ViX44 (893232) on Sunday March 18, 2007 @01:46AM (#18392271)
    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.
    • by Rakishi (759894)
      Ah, but what isn't wasted time? In the end none of it matters, when the universe becomes a frozen wasteland in billions upon billions years the only effect you may have is where a infinitesimal amount of that frozen junk sits.

      By some metrics having enjoyed life, whatever enjoyment is to you, is the best way to waste it.
    • by mabinogi (74033)

      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.
      How do you know they're the same people?
    • by smchris (464899)
      We're all born stupid. Part of being kind is being kind to yourself and giving yourself some slack for the "wasted" time. From Kurt Vonnegut's latest, A Man Without a Country: "We are here on earth to fart around. Don't let anybody tell you any different."
  • 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?
    • Re: (Score:2, Insightful)

      by linguizic (806996)
      So you know whether or not to bother with a 401k.
    • by knewter (62953)
      You gain knowledge itself. There are those of us who revere that. I personally revere knowledge, even though I KNOW that it's not absolutely good and that this revered status is unwarranted. Still, I'd rather know than not, about everything.
      • by marshac (580242)
        Hypothetical situation- Your father does not want to know if he is a carrier of some sex-linked nasty untreatable illness, although you want to know if you carry it. If you're tested and found to carry the gene, your father therefore must carry the gene. Does your right to know about your own genes trump someone else's right to not know about theirs? The response that "I just won't tell them" is probably a bit disingenuous...

        I'm not sure there is a right or wrong response, but this is probably one of the ma
        • by knewter (62953)
          I would simply tell my father. I unambiguously shoot down any right to ignorance. The ignorance of others often causes me great trouble.

          If he takes issue with me for informing him, fine. That's between us, and I would accept any consequences it might have. I think most people in the world are far too pansy about feelings and far too weak about fact.
        • by ptbarnett (159784)
          RTFA.

          The subject faced exactly that dilemma. The fact that she has the genetic abnormality meant that her mother also has it. However, she has a rocky relationship with her mother, and they aren't on speaking terms.

          But, the information was relevant to another important issue. I'll refer you back to the article to see how it turned out.

    • Don't have kids. That's why. To do so would be purely selfish.
    • by Xenna (37238)
      These days you can choose to have kids via IVF combined with Pre-implantation Genetic Diagnostics. That way you can make sure you don't pass it on to your kids. Or don't have kids at all, of course.

      Also, there is a promising new technology called RNA Interference that may be used to stop the defective genes from expressing themselves one day.

      http://en.wikipedia.org/wiki/Preimplantation_genet ic_diagnosis [wikipedia.org]
      http://en.wikipedia.org/wiki/RNA_interference [wikipedia.org]

      X.
  • 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...
  • 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.
    • by Reziac (43301) *
      What's happening with MS? My dad died of it, but I live in a cave and haven't heard about the latest advances.

      (Tho I'm well past the age of onset and probably don't have it, so it's not really a worry here.)

  • by bmo (77928)
    "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
    • Re: (Score:2, Insightful)

      by Kufat (563166)
      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.
  • Right mindset (Score:3, Insightful)

    by ms1234 (211056) on Sunday March 18, 2007 @02:22AM (#18392437)
    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.
  • by nephridium (928664) on Sunday March 18, 2007 @02:23AM (#18392447)
    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?
  • Avoid Alzheimer's... (Score:5, Interesting)

    by quokkapox (847798) <quokkapox@gmail.com> on Sunday March 18, 2007 @03:25AM (#18392677)

    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.

  • by Z00L00K (682162) on Sunday March 18, 2007 @03:31AM (#18392687) Homepage
    Using genetic analysis to cull bad genes may be the way to go for people if humankind shall continue development. The point is that today we are able to defeat most illnesses that earlier were fatal and therefore genes that are bad will now be able to propagate.

    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.

    • Re: (Score:3, Insightful)

      by Stinking Pig (45860)
      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 regimen
  • s 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.

    .. to your chances of ever getting life or health insurance.

  • Umm no. Only those that take a test have to face it. The rest of us, wont.
  • Stupidity in the extreme coming along later in life. Has to be genetic.
  • 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 s
  • having kids? (Score:4, Insightful)

    by ColGraff (454761) <maron1@min d s p r i ng.com> on Sunday March 18, 2007 @12:04PM (#18394515) Homepage Journal
    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.
    • Re:having kids? (Score:4, Insightful)

      by Reziac (43301) * on Sunday March 18, 2007 @03:21PM (#18395685) Homepage Journal
      My take on it: What gives you the right to KNOWINGLY inflict a high probability of unusual suffering and early death on your children? How is having a child in that situation NOT unfair to your kid?? It's like saying to your kid, "We knew in advance that your life would probably suck big-time, but we did it anyway." Producing a child under such circumstances isn't love, it's just selfishness.

  • Anonymous testing? (Score:3, Insightful)

    by exhilaration (587191) on Sunday March 18, 2007 @12:05PM (#18394525)
    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?
  • by hackus (159037) on Sunday March 18, 2007 @02:42PM (#18395429) Homepage
    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
    • Re: (Score:3, Informative)

      by Coleco (41062)

      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.

      I agree with everything you said but in particular this is an insightful statement. I'm not sure how it is in the states but there's not a lot of incentive to go into biotech here (in Canada). The pay is really crappy and there's not a lot of jobs. If I want to become a researcher now I have the option to go to grad school and get paid $18k a year for 5 years, of which school fees will come out of during that time. After that you make decent money, but your wages probably never will be commensurate with yo

  • by schweini (607711) on Sunday March 18, 2007 @03:42PM (#18395819)
    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?

If I'd known computer science was going to be like this, I'd never have given up being a rock 'n' roll star. -- G. Hirst

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