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Medicine Biotech Privacy

Privacy Fears Send DNA Tests Underground 222

Posted by Soulskill
from the no-not-literally dept.
biobricks writes "The New York Times is reporting that people who could benefit from genetic testing are too afraid their health insurance companies are going to raise their rates or deny them coverage to find out the health information contained in their own genes. There is a growing "genetic underground" where people pay for their own tests so they won't have to share the results with insurers, and beg doctors not to divulge their genetic status in medical records. A bill that would ban genetic discrimination by insurers and employers — and presumably make people feel safer about taking care of their health — is stalled in the Senate. We've discussed these types of personal DNA tests in the past."
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Privacy Fears Send DNA Tests Underground

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  • by HalifaxRage (640242) on Sunday February 24, 2008 @11:15AM (#22535414) Journal
    can they change the colour of this thing in my hand?
  • Insurance policy (Score:4, Insightful)

    by Z00L00K (682162) on Sunday February 24, 2008 @11:17AM (#22535424) Homepage
    is always to avoid paying out money and to aggregate money to build profit.

    An insurance is a way for the insured to get an acceptable cover for risks and an insurance company also has to take a reasonable risk. Even if a certain genetic predisposition exists doesn't mean that it actually is triggered in an individual.

    • by CRCulver (715279) <crculver@christopherculver.com> on Sunday February 24, 2008 @11:21AM (#22535452) Homepage

      Isn't this just another sign that the adoption of new technology (e.g. broadband) by the American public is slowing due to governmental and societal hassles? You don't have to be a wacko like Michael Moore in Sicko [amazon.com] to admire the benefits of a public health system. If people can't lose their coverage, people might not fear DNA testing.

      • by Taevin (850923) * on Sunday February 24, 2008 @11:46AM (#22535678)
        The interesting thing is that if the US had a health care system based more around prevention rather than treatment (and that includes insurance companies as well), costs would probably be lower since it's often cheaper to 'treat' illness factors before they become a full disease. In the case of DNA testing, if it revealed I had a predisposition for a certain disease it's stupid for insurance companies to "punish" me for finding this out since I may be able to prevent it from ever becoming a really expensive problem, thus saving them money.
        • Re:Insurance policy (Score:4, Interesting)

          by CRCulver (715279) <crculver@christopherculver.com> on Sunday February 24, 2008 @11:51AM (#22535710) Homepage

          The interesting thing is that if the US had a health care system based more around prevention rather than treatment (and that includes insurance companies as well), costs would probably be lower since it's often cheaper to 'treat' illness factors before they become a full disease. In the case of DNA testing, if it revealed I had a predisposition for a certain disease it's stupid for insurance companies to "punish" me for finding this out since I may be able to prevent it from ever becoming a really expensive problem, thus saving them money.

          Nonetheless, isn't there some kind of an economic argument that if insurance companies paid for people to avoid one big illness, with their longer lifespan they would end up costing the company more in smaller illnesses over time?

          • Re:Insurance policy (Score:5, Interesting)

            by tomhudson (43916) <barbara.hudson@b ... h u d s o n .com> on Sunday February 24, 2008 @12:01PM (#22535792) Journal

            Nonetheless, isn't there some kind of an economic argument that if insurance companies paid for people to avoid one big illness, with their longer lifespan they would end up costing the company more in smaller illnesses over time?

            Plus, the quicker someone dies, the less chance they have of getting one of those expensive dieseases ...

            Its like social security - a REAL patriot will die on their 65th birthday!

            • Re: (Score:3, Interesting)

              Its like social security - a REAL patriot will die on their 65th birthday!

              It might (or not) be helpful to remember that when Social Security began, average life expectancy was slightly under 65. so fewer than half those who paid into it collected, and most of those who did collect died shortly after they began collecting.

              Social Security's financial woes are entirely a result of the increasing life expectancy of Americans....

              • Re: (Score:3, Insightful)

                by bhiestand (157373)

                Its like social security - a REAL patriot will die on their 65th birthday!

                It might (or not) be helpful to remember that when Social Security began, average life expectancy was slightly under 65. so fewer than half those who paid into it collected, and most of those who did collect died shortly after they began collecting.

                Social Security's financial woes are entirely a result of the increasing life expectancy of Americans....

                Don't worry, we're working around the clock to correct this problem.

                Also, you're oversimplifying life expectancy. I believe the life expectancy you're referencing was that of a newborn child. If a person manages to survive childhood, their life expectancy goes up. If they manage to survive to adulthood, their life expectancy goes up again. If a person manages to survive everything from adulthood to retirement, their life expectancy is even higher. I can't find the exact numbers right now, but although

          • by legirons (809082) on Sunday February 24, 2008 @12:05PM (#22535822)
            "Nonetheless, isn't there some kind of an economic argument that if insurance companies paid for people to avoid one big illness, with their longer lifespan they would end up costing the company more in smaller illnesses over time?"

            If your insurance premium was per-life rather than per-year, then yes it might...
        • by Lorien_the_first_one (1178397) on Sunday February 24, 2008 @11:56AM (#22535742)
          Consider that the National Association for the Self-Employed offers the following on their policies: you pay a monthly premium from now until you're 65. Your premium never goes up. When you get there, they say, ok, lets look at your claims against the insurance. They add them up. Then add up the premiums you've paid. And they give you the difference if anything is left over. Apparently, they invest the money because i was told that if I started today, i would have about $800k in premiums paid. Then they would deduct the claims and give me the difference. They are the first company I've heard of that does this. Had I know about this, I would have done it a long time ago.
          • by Mr. Slippery (47854) <tms.infamous@net> on Sunday February 24, 2008 @12:19PM (#22535910) Homepage

            Consider that the National Association for the Self-Employed...

            ...is a front for MEGA Life and Health [businessweek.com]. Though they certainly try to hide it, NASE is not an actual indepentent "association", but the marketing arm of MEGA. Fortunately, the high-pressure sale techniques of the agent I encountered were enough to tip me off that something was wrong, and I Googled before I bought and so learned how bad the "coverage" MEGA provides actually is [boston.com].

            Avoid NASE [google.com]. It's a scam.

          • by tomhudson (43916) <barbara.hudson@b ... h u d s o n .com> on Sunday February 24, 2008 @12:35PM (#22536038) Journal

            In other words,

            1. if the investments lose money, you have no health care - they still get their cut
            2. at age 65, we wash our hands of you, after taking our cut, so forget about all those expensive health problems old people have
            3. its not insurance - if we lose money on you, we don't average it with other people in a collective risk pool - but we still get our cut
            4. the premium never goes up - but medical expenses are increasing by 12% a year, doubling every 6 years. In 30 years, that $800k will buy $25k worth of health care in today's dollars. That will keep you in Depends in a nursing home for what, one year today?
            • by big_paul76 (1123489) on Sunday February 24, 2008 @04:09PM (#22538238)
              The statistic I heard (regrettably I can't find/am too lazy to try and source it now) was that in Canada, of every dollar spend on health 8 cents is administrative costs.

              Versus 24 cents of every dollar in the US. And we have better overall healthcare outcomes. (Although to be fair, the US has some pockets of spectacular poverty without an equivalent in Canada, except for Vancouver's DTES, so the health care outcomes comparison is probably apples and oranges.)

              So why not just, y'know, by an act of congress, make the government the single-payer for anybody who wants it? We basically did the same thing in the 60's when we brought in medicare, the doctors actually went on strike to try and prevent it, but it's a genuine Good Thing to have.
        • Re: (Score:2, Interesting)

          by headpushslap (583517)
          There is a Dutch Study which points out that healthy people cost more than smokers or obese people, over a lifetime. http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0050029 [plosjournals.org]
        • That is the often-repeated mantra. However, it is, at best, simplistic and at worst very misleading. There is a very nice summary of some findings in this week's New England Journal of Medicine, very accessible reading for the non-M.D. too. Take a look if you are interested, it is free access for all:

          http://content.nejm.org/cgi/content/full/358/7/661 [nejm.org]

          Before the idiot flamers start -- I am NOT saying that the above poster is absolutely WRONG, just that it is more complex as some of the followup posts sugge
        • by cayenne8 (626475) on Sunday February 24, 2008 @02:54PM (#22537472) Homepage Journal
          "In the case of DNA testing, if it revealed I had a predisposition for a certain disease it's stupid for insurance companies to "punish" me for finding this out since I may be able to prevent it from ever becoming a really expensive problem, thus saving them money."

          But, that's exactly what they do and want to do...especially if you are trying to get insurance privately!! If you have a pre-existing condition as innocuous as athlete's foot....I've hear of people being turned down. I went indie...and before I got insurance, I let my other lapse and waited too long for cobra...and had a HELL of a time getting anyone to take me at any price due to high triglycerides.

          I finally did by getting with a fly by night place...and then using that as reference to get with a real insurance co...but, these days I gotta tell you, I pay for most all tests I can on my own, and I try to get my Dr. to write down as little as possible when I have a complaint so as not to put anything in a permanent record about my health.

          I still can't get long term disability...dues to some complaints about chest pains which turned out to be nothing at all.....that is on record.

          I can easily afford whatever premiums they would charge, but, I can't get them to even offer me coverage.

          It isn't so much that health care is too $$ or coverage is....it is that insurance companies can cherry pick who they want to cover. All I want is catastrophic coverage...and I can save the rest I want in an HSA that rolls over, and can be invested in the mkt..and grows...pre-tax. But, I just find it is hard to get coverage at all if you even appear to be a risk...

        • Re:Insurance policy (Score:5, Interesting)

          by big_paul76 (1123489) on Sunday February 24, 2008 @04:03PM (#22538168)

          it's stupid for insurance companies to "punish" me for finding this out


          Um, yeah, assuming that insurance companies are playing straight. But they're not. There's a million poeople in the US employed full-time to do essentially nothing but find ways to deny the insurance claims of people who have been paying health insurance premiums for years.

          Compared to up here in Canada, you guys pay lower taxes, but I'm not ever going to be charged one cent for a medically necessary treatment. (granted we still have some catching up to do with europe on drug coverage...)

          So, you can pay X% in taxes and have free medical. Or you can pay some fraction of X in taxes and make up the difference in health insurance, which may or may not cover you when you actually need it when you get cancer or something.

          Who was that greek stoic who said "Call no man happy, until he is dead"? It's like that with insurance. Call no man insured, until he is dead.
        • Re: (Score:3, Interesting)

          by umghhh (965931)
          It is cheaper to hire a bunch of lawyers instead...
          I wonder sometimes why such vital part of our society is used mostly for profiteering. There was an article in the economist few weeks back: they compared the avoidable deaths due to problems in health care system and costs of the system in various developed countries. The result was interesting: US was in vary bad shape - the highest investment and poorest record. One may ask why but I think the answer is rather obvious - no control and focus on profit mak
    • by TheLink (130905) on Sunday February 24, 2008 @01:22PM (#22536448) Journal
      They also _delay_ payouts (in addition to not paying out for ethically _bogus_ reasons - you did stuff 10 years ago so we're not paying, don't like it? Don't think that's relate? Sue us - have fun attending court while you're dying)

      Say a company makes millions of dollars worth of payouts a day, if they delay for 2 months, they make a LOT of money.

      Doctors paid by the insurance companies usually have an incentive to work for the insurance company rather than the patient. So more people die that way.

      Sometimes it's cheaper if the person dies - sure you pay out eventually, but I think you pay out less. They'll do the math accordingly.

      I guess the idea is if some people have to die so that you can afford another yacht/plane/mansion, too bad for them.
  • by anglico (1232406) on Sunday February 24, 2008 @11:18AM (#22535434)
    was that the results are mailed ONLY to the test subject. The paper the patient gave me with the lab address to mail to specifically stated that they will not release the results to anybody else, not even the doctor unless there is a signed document declaring that this is the patients decision. Granted this is only one lab, but Im hoping its the same for all labs.
    • by weston (16146) <westonsd.canncentral@org> on Sunday February 24, 2008 @12:09PM (#22535852) Homepage
      I think this is pretty interesting, because 100% of the time, I have to fight to get a solid copy of lab reports on blood work, and half the time the staff at the doctor's office (across several offices) will look at me like I'm some kind of freak because I want copies of my own medical tests and doctor's notes. I can ask that copies of whatever's produced by a test be sent to my home address as well as the ordering doctor's office and they never, ever come. Not once.

      The only effective way I've found to actually get records is to tell them I want records faxed to another doctor... at a number I receive at.

      If my experience is any indication, most patients don't have *access* to their own medical records, let alone control over them.
      • by Ritchie70 (860516)
        I haven't had a lot of lab work done, but in watching my wife's experience, it's a fight to get it sent anywhere in a timely fashion, including to the doctor who ordered it.

        That battle is typically followed a fight to get the doctor's office to admit they received it once the lab does send it.
      • by roman_mir (125474)
        I am a Canadian citizen, that's why I have to go to other countries to get the kind of attention that I want to my health. I like Germany for this, a couple of thousand of Euros give me a lot of power in terms of diagnostics. There is NEVER a question about me getting full access and control about what is happening to me. All tests are in my hands, all choices are for me to make with the advice of really good doctors. That's the way I like it.
      • by MMC Monster (602931) on Sunday February 24, 2008 @01:47PM (#22536668)
        IAAP (I am a physician), and I can tell you that I *never* hesitate in giving patients their lab results, etc. I will even give them a copy of recent tests, etc. I only make a not of it in the official chart if the patient asks for copies of their entire record (but even then don't delay). Physicians are part of the service industry. If we don't serve, there are plenty of alternatives.

        That being said, I've seen other medical offices in which their general policy is to avoid giving official documents to patients, in fear of litigation. My thought on the subject: A happy patient is less likely to sue, even if a mistake is made.
      • by vyrus128 (747164)
        The only effective way I've found to actually get records is to tell them I want records faxed to another doctor... at a number I receive at. I am actually noting this trick for future use -- do you ever have to give an explanation of why you have another doctor / who it is? And if so, what's your excuse?
      • by 3waygeek (58990)
        FWIW, I had some blood tests done about a month ago. The doc gave me the printed results without my asking for them, and took the time to go over them, explaining what was significant & what wasn't.
    • by fhic (214533)
      I'm not sure where you work(ed?) but this is the exact opposite of my lab in California, which is part of a major national chain. The report goes to the ordering physician, and a copy to the patient only if the ordering physician authorizes it. Except for certain low-complexity tests, all lab testing has to be ordered by a licensed physician or an AP/NP under their direct supervision. This is regulated by the state Department of Health Services.

      The problem discussed in the article has been a problem for
  • by NIckGorton (974753) * on Sunday February 24, 2008 @11:18AM (#22535436)
    People already do this with tests other than genetic ones. I have heard many times: "Don't write this in my record but..." with regard to 'stealth' health care problems. In most states you can order labs without a doctor's prescription through direct to consumer labs, so you can find out all sorts of things that can effect your insurability. Heck, go to a pharmacy and you can check your BP for free.

    The solution of course isn't congress passing a bill that makes such discrimination illegal, but rather to pass a bill that establishes universal health insurance (preferably single payer, but lets be honest, the US is far too much a classist society to adopt that... sigh.) Though what's particularly stupid about such a bill is that it would outlaw discrimination from insurers if I noted in your record that you had a blood test that said you were predisposed to diabetes or hypertension, but it would not outlaw the same discrimination that would occur if I noted in your chart that your BP was 160/100 or your fasting blood sugar was 160. If we diagnose your hypertension or diabetes with a $2000 test, you are safe, but if I diagnose it with a $3 lab test or by taking your BP several times, you are hosed.

    Brilliant.
    • as then they can just keep you from working if you have predisposed to be sick have have to miss work for a long time.
    • by Tuoqui (1091447)
      Unfortunately this wont help for tests where there are already established easily detected stuff... What it will help prevent discrimination for is genetic defects and genetic disorders that are difficult or impossible to diagnose without genetic tests like Huntington's Disease (there was a slashdot article about some young woman doing a test in her 20's to tell how much 'time' she had before the disease affected her) and other such things where the only way to tell is a DNA test.

      Just like you're screwed wi
    • by Solandri (704621) on Sunday February 24, 2008 @03:05PM (#22537582)

      The solution of course isn't congress passing a bill that makes such discrimination illegal, but rather to pass a bill that establishes universal health insurance (preferably single payer, but lets be honest, the US is far too much a classist society to adopt that... sigh.)
      You're missing the bigger picture.

      Ask people if auto insurers should be able to raise rates for people who cause an accident, most will say yes. Ask people if auto insurers should be able to raise rates for people whose cars are hit while they're parked, most will say no. Ask people if health insurers should be able to raise rates on smokers, most will say yes. Ask people if health insurers should be able to raise rates for someone genetically predisposed for a disease, most will say no.

      What people want isn't economic-driven health insurance, nor is it universal health insurance. What people want is a system where you have to pay more for negative influences under your control, but not pay more for negative influences outside of your control. This is why universal health insurance is a no-go in the US - people get hung up on the idea that folks who take unnecessary risks or don't take care of their bodies will be getting a "free ride". They don't care that someone who develops Alzheimers will be covered and raise their insurance rates; in fact they're altruistic enough that they'll gladly donate to charities to help people who develop diseases outside of their control. But they find repugnant the idea of them being forced to (via universal health care) help someone who won't even try to help himself.

      That's the obstacle universal health care has to overcome to be accepted in the US. That's why people don't like the idea of genetic testing to determine health insurance rates, even though on an economic level it makes perfect sense. Figure out a way to incorporate this concept into universal health care and Americans will probably be all for it. If you can't find a way to do this, then you'll have to resort to statistical models of overall benefit (the no-fault vs. at-fault auto insurance debate - where determining liability costs more than the benefit of assigned risk), which is a much harder sell.

    • by cayenne8 (626475)
      "The solution of course isn't congress passing a bill that makes such discrimination illegal, but rather to pass a bill that establishes universal health insurance (preferably single paye..."

      I gotta say I disagree with you..I'd prefer the former. I'd much rather pay my own way, save in a HSA pre-tax....and pick and choose my own doctors....and while healthy, have my pre-tax medical dollars I save grow tax free.

      My trouble has been just getting high deductible insurance or long term disability insurance 'c

  • by MWoody (222806) on Sunday February 24, 2008 @11:25AM (#22535498)
    *sigh* So now we have to hide information in the fear of the privately owned companies, who operate for profit and nothing else - as well they should; that's how the system works - increasing our rates. How bad are things going to have to get before we let our taxes take over where insurance companies currently operate? Yes yes, it's "taking away our freedoms." Y'know what, though? I'm willing to give up my right to die from a treatable wound or illness.
    • by ATMAvatar (648864)

      The problem is, they don't merely increase your rates. With the right (or wrong, as the case may be) set of pre-dispositions, an insurance agency will refuse to accept your business, as you are too much of a risk. This is less of an issue with employer group plans, of course, but it can still happen. Life insurance companies are even worse than health insurance companies.

  • The movie "Gattaca" (Score:3, Informative)

    by blind biker (1066130) on Sunday February 24, 2008 @11:29AM (#22535530) Journal
    More and more aspects of that movie are becoming reality. I am not comfortable with this aspect of our future, guys. This is not good.
    • by mrxak (727974)
      I think ultimately, my choice in who to vote for in the general election will be based largely on privacy issues. If there's any supreme court nominees to be had, I want them to have my privacy in mind in the future world of the internet and genetics.
      • If you're basing your decision of who to vote for on that, then you, sir, are dumber then I.

        I would prefer basing my decision of what structural changes a candidate would implement in order to deal with the reality and thus avoid a Gattaca scenario.

        Getting the insurance companies out of health care is a very good place to start. (They are fundamentally dedicated to health-don't-care because caring about the fate of individuals would impact their bottom line.)

        If we take care of the stigmatization (all based
  • by santiagodr (1137157)
    The movie Gattaca. Not the best movie out there, but definately not a horrible movie. It is about the future when people are discriminated against because of their genes. Looks like we are getting closer to the sci-fi world that we dreamt about 20 years ago...
  • by Djatha (848102) on Sunday February 24, 2008 @11:31AM (#22535548)

    That is what you get when health insurance companies are allowed to make money: they try to make money and do not care about the health of the people as long as they can not make money. In my opinion the health insurance companies should be rewarded for their service to people and peoples health, not for making money.

    Of course, I am living in socialist Europe, so for me there is not really a problem. However, for you guys in the US, it kind a sucks, does it not? Would it hurt to transform your health and insurance system as to promote health for everyone instead health for those who can and are willing to pay? Of course, there will always be people not paying, living as unhealthy as possible (obesitas, alcohol, smoking, driving in cars, etc), but in the end would it not be nice to know that your health is save no matter what happens with you economically?

    • Of course, there will always be people not paying, living as unhealthy as possible (obesitas, alcohol, smoking, driving in cars, etc), but in the end would it not be nice to know that your health is save no matter what happens with you economically?

      No. Because no one is subject to random economic events. Yes, people unexpectedly lose their jobs, but anyone who is well prepared won't be subject to significant risk because of that. They will have savings set aside and they understand that they will have the (

      • by NIckGorton (974753) * on Sunday February 24, 2008 @12:12PM (#22535870)

        No. Because no one is subject to random economic events. Yes, people unexpectedly lose their jobs, but anyone who is well prepared won't be subject to significant risk because of that. They will have savings set aside and they understand that they will have the (federally mandated) option to continue their current coverage for up to 18 months if they chose to pay.
        So, you are working hard at your job, have no consumer debt, own your home, and have $50,000 in savings (much better than most Americans, but lets go for a best case scenario.) Then you get diagnosed with cancer. So you start undergoing treatment, but because of the toll on your health, you have to quit your job. Your EMTALA mandated coverage is $700 a month for you, but you elect to pay it because otherwise you will be unable to receive your treatment. It will take $12,800 of your savings, but that is your first priority.

        You begin living as frugally as you can, but the bills keep mounting. Your insurance has a $2,000 deductible per year, then you have to pay 10% of costs up to a maximum out of pocket of $6,000 per year. So the first several months, you pay out $6,000, but then the first of the year hits and you again have to pay $6,000 in the first few months of the next year. So your $50,000 in savings is now down to about $25,000 just with your out of pocket costs and paying 18 months of EMTALA coverage.

        The chemo and radiation you receive gives you profound weakness and nausea/vomiting. Unfortunately the inexpensive antiemetics phenergan, compazine, and reglan all give you a severe dystonic reaction. So the only one you can take is zofran, which your insurer refuses to pay for because its non-formulary. You only use it for the worst days after your rounds of chemo and split pills when you can, but its the only thing that will help. Even ordered online at the cheapest Pharmacy you can find they cost $10 a pill. So you end up spending an extra $300 per month for medicine in addition to the $15 per month copay each for your other half a dozen medicines. So your out of pocket drug costs are $400 per month. That plus your bare minimum living expenses (food, utilities, tax on your house, travel to and from the hospital) are about $2000/month. So by the middle of the year, your savings have dwindled to almost nothing.

        So you begin borrowing by taking a loan out on your home, this gets you through the end of the year and into the beginning of the next. Unfortunately, as a result of the treatments, you suffered a mild stroke and now have to walk with a walker. So you begin the laborious process of applying for disability. You are initially denied, and hire a lawyer who works on commission, but he tells you it will probably be a year or more before you get disability (and hence medi-medi coverage as well.)

        I'm getting tired of writing this, and depressed because its all too common. Over half of people in the US in 2006 who filed for bankruptcy did so because of health care bills. Over half of those were employed and insured when they became ill. Don't fool yourself into believing that you can render yourself immune from this should you lose your health and hence your usefulness to a capitalist society. We discard 'useless people' like yesterdays newspaper. And the only reason it hasn't happened to you is you are still producing.
        • I am pitting my wife through college for two reasons:

          1) To save her sanity. Being unemployed was driving her nuts and being too near a refrigerator was driving her fat.

          2) When she finally gets health benefits working for a Catholic School board, its one less worry.

          Personally, I hope the USA wakes the hell up and does what Canada did decades ago.

          And the argument about socialized medicine being bad for health care is so bogus (as this article points out,) is not funny.

          The USA would have achieved even MORE wit
        • by seifried (12921)
          The US "health care" system astounds those of us living in other countries. How come people put up with this?
          • by McDutchie (151611)

            The US "health care" system astounds those of us living in other countries. How come people put up with this?

            Americans are pathologically paranoid about anything to do with government. It's in their cultural genes. That's understandable because the US was founded in order to get away from autocratic, corrupt and tyrannical European governments in power at the time. But that's also why they are willing to put up with severe dysfunctionality caused by lack of proper government.

  • by Junta (36770) on Sunday February 24, 2008 @11:40AM (#22535620)
    Would they lower rates due to a clean genetic test compared to the normal now?

    How long before insurance companies proactively raise rates, but then offer a discount back to normal if you provide genetic test results?

    Is the bill worded such that neither penalties nor bonuses can be given out due to a genetic screen?

    How much different really is it from family history, just a more accurate measure?

    Insurance is all about modeling the risks for an individual based on available medical data. In *theory*, if genetic screening can increase the accuracy, then people with clean genetic situations should get decreased rates from what they pay now, while those with the dispositions carry the burden of the risk. If all goes according to the hypothetical, neither way is particularly feels 'fair'. On one hand, your rates go up because you got stuck with some genetic predisposition for heart disease that you couldn't control, that may never manifest. On the other hand, someone with a genetic disposition that will never suffer a particular ailment, will have to pay for the risk of that ailment anyway.

    Of course, the chances insurance companies would *lower* any rates is slim, just jack up rates with the excuse of apparently increased risk individuals without ever acknowledging the class of reduced risk individuals.
    • by Vellmont (569020) on Sunday February 24, 2008 @12:19PM (#22535916) Homepage

      Insurance is all about modeling the risks for an individual based on available medical data.

      No, Insurance PROFITS are all about modeling the risks. Insurance is actually about distributing unknown risk among a large number of people. If I had a time machine and could look into the future and see if I'd ever need insurance, the whole thing would become completely pointless, as I'd know exactly what was going to happen. If the insurance company had access to my "time machine test results", they'd either cancel my health insurance if I was going to get sick, or I'd just sock all that money away in a bank account if I wasn't.

      In *theory*, if genetic screening can increase the accuracy, then people with clean genetic situations should get decreased rates from what they pay now, while those with the dispositions carry the burden of the risk.

      I think what people are really concerned about here is that certain individuals will just not be able to get health insurance. We don't really worry about that for car insurance, or flood insurance, or whatever, since you can always choose to not drive, or live somewhere else. Without health insurance, the only real alternative if you get gravely ill is death, or bankruptcy and losing your job (then maybe medicaid will take over). I think most people would say those aren't very good alternatives.
      • by Junta (36770)

        No, Insurance PROFITS are all about modeling the risks. Insurance is actually about distributing unknown risk among a large number of people

        You're right, taking my view of it to the ultimate extreme (knowing perfectly the future) reduces things to no insurance in the end. Of course, by definition, genetic screening is reducing the amount of distributed unknown risk, so it still would play into your more accurate description If all risks are known, insurance would devolve to meaningless either way. The opposite end, where everyone gets a flat fee won't work in today's market. Any company that offers a flat fee based on the total average of

      • "There is no way an HMO can properly function bound by such a rule," said PhysCare-Plus member-accounts departmental supervisor Toby Francis. "HMOs must be free to disclose patients' medical, personal, and financial information to insurers. How else can we determine what treatments a patient is or isn't eligible to receive? If someone needs a new lung and they don't have the necessary funds to pay for it, how are we supposed to know not to perform the surgery? I can't tell you how many cost overruns have be
    • That's a very interesting statement. I would have said that the *theory* of insurance is that it is a mechanism to pool risk, not merely to calculate it. Payments are based on prior probabilities, allowing us to plan our lives, and payouts are made to compensate for surprises. After all, if it doesn't do this, why have insurance at all? You minimise your premiums by cancelling your policy, so on the libertarian analysis the best insurance is no insurance; you just gamble on remaining as lucky as you are tod

  • Not discrimination (Score:3, Interesting)

    by icepick72 (834363) on Sunday February 24, 2008 @11:42AM (#22535638)
    From a health insurer's perspective you'd be foolish to cover a disease for an individual if they have the bad gene. This isn't discrimination. It's facts and statistics, common sense from a business perspective. Arguably they could charge higher rates to those individuals (like they do to smokers). Health insurers already "discriminates" against you if you've prior disease. They can continue to do the same and it will be no more wrong than it is now. Discrimination is unjust. Medical facts are not discrimination.
    • by Waffle Iron (339739) on Sunday February 24, 2008 @12:03PM (#22535804)

      They can continue to do the same and it will be no more wrong than it is now.

      But it is wrong now. The entire US healthcare risk underwriting system is wrong.

      By having thousands of individual risk pool managers obsess over saving money by kicking out people who might actually use healthcare services, we ironically end up with a system that costs us almost twice as much overall as any other country, while at the same time not even covering a huge swath of the population.

      Meanwhile, needlessly stupid thing like worrying about who gets a hold of medical tests causes stress for millions. Millions more are tied to their corporate jobs like feudal serfs because of fear of losing healthcare benefits.

      To stop this insanity, there needs to be one single uniform national risk pool.

    • by cHALiTO (101461) <[moc.liamg] [ta] [olahcle]> on Sunday February 24, 2008 @12:07PM (#22535834) Homepage
      Discrimination is unjust. Medical facts are not discrimination.

      Medical fact is not discrimination. Making a different decision based on differences in those medical facts IS discrimination. The person saying "we will not give insurance to this person due to this criteria" is discriminating. Wether that kind of discrimination is or not wrong is another matter. I personally think it is.

      One thing is to make a person who decides to smoke pay more, as it is a conscious decision of that person, and that person could give up smoking to avoid higher fees, and another is to somehow marginalize you because of a gene, something that you cant change, and that you didnt choose.
      • by Fëanáro (130986)

        One thing is to make a person who decides to smoke pay more, as it is a conscious decision of that person, and that person could give up smoking to avoid higher fees

        Actually a recent study [plosjournals.org] claims that while the per-year health care cost of smokers is higher, the total lifetime cost is lower than for non-smokers.

    • Re: (Score:2, Insightful)

      by holistah (1002858)
      The problem is the genetic tests available don't always give facts. The presense of a gene does not by itself indicate higher risk for most diseases, what it indicates, is a predisposition, so that if dozens of other factors are just so, combined with the gene, then your risk is higher. It is VERY subjective. Additionally, as someone else pointed out, genes are not something you can change. To make it more plain: We know that blacks are statistically more like to get certain diseases, therefore are higher r
    • Re: (Score:3, Insightful)

      by zappepcs (820751)
      You have made a perfect argument for why health insurance in a community should not be the equivalent of gambling.

      The argument that insurance companies already discriminate against people is exactly why this system needs to change. If a private system is not able to bear the burden of risk associated with provide all people the same coverage, it is a broken system. Sure, you and they will want to complain about how unfair that is and I will continue to tell you that this should not be about fairness. Insure
  • by pla (258480) on Sunday February 24, 2008 @11:59AM (#22535770) Journal
    Don't sweat the small stuff, people. At the moment, the insurance companies can't accurately enough correlate your DNA to your future expected healthcare costs - Your familial history and general current health indicates that far more accurately.

    So don't worry about taking your curiosity underground, the evil bastards simply don't care yet; and when they do, you'll simply get your test date in the mail (or the option to drop your coverage).
  • without a Constitutional ammendment guaranteeing our right to privacy.

    And it's not just on the level of DNA testing. We're already hearing about the dangers that data-mining companies like Acxiom are posing to privacy through their purchase and aggregation of previously unrelated databases.

    Universal healthcare in the United States would fix one part of the problem, which is that you could be denied insurance coverage based on factors over which you manifestly have absolutely no control.

    However, discriminati
  • Blood Secrets (Score:4, Insightful)

    by Doc Ruby (173196) on Sunday February 24, 2008 @12:03PM (#22535802) Homepage Journal
    Wait until someone's genome is copied without their permission from when they donate blood, and the privacy backlash leaves blood banks dry, patients dying.

    Individuals should get the same explicit copyright protection on our personal data, including our genetic and other health data, as corporations get on recorded products. Personal data must be destroyed once the transaction for which it was initially transmitted is complete, with short timeouts, unless explicitly permitted into some specified other scope. Violations should be criminal violations of our privacy rights.

    Probably we need a Constitutional Privacy Amendment to make indisputable the force and clarity of this protection of our rights. The Fourth Amendment already protects our private data, but the government hasn't been enforcing it. Since the 4th is itself redundant to the Constitution's lack of a created power to invade our privacy, it's clear that the fundamental line between private and public that is the basis of our liberty must be reiterated strongly or be ignored.

    As our entire world becomes defined by the Info Age, the people better get our government to properly protect our privacy soon, or there will be blood.
  • The dangers of discloser of your DNA to potential insurers and employers would seem to create an opportunity for people to self-test.

    At the moment for a fee you can send a swab to a lab, and they'll return the results to you. That's reasonably private until Acxiom buys a copy of their database or the Department of Homeland Security decides it wants to know your genetic code for whatever reason.

    But if you had an affordable device you could drop a swab into and have it return results, there would be no need f
  • by crovira (10242) on Sunday February 24, 2008 @12:43PM (#22536102) Homepage
    taking care of you.

    They are in the business of evaluating risk and spreading that risk to all of their share holders while charging a premium based on the risk in order to MAKE A PROFIT.

    You, as an individual, don't matter. In fact you, as an individual, don't exist.

    If you fall into the cost side of the equation, they will try to eliminate you as you are reducing their profits.

    You can't run health care for profit.

    The United States is the LAST hold out in the civilized world where people think it can be. (Actually, they DON'T but the major shareholders, being anonymous pools of capital, DON'T CARE about the suffering of individuals.)

    You aren't even a line item on a spreadsheet somewhere.

    The only way to actually run a health care system (as opposed to the health-don't-care system currently in place) is with socialized medicine, just like we have a socialized military (you don't want a bunch of militias running around after all.)

    Health is a social responsibility.

    Insurance is an actuarial game played for profit. (As long as you don't need it, you don't mind losing a little bit since it is spreading risk around to all the players. The problem comes when you DO need it and the companies DON'T WANNA PAY. [With health care, you might very well DIE!!])
  • by Overzeetop (214511) on Sunday February 24, 2008 @02:59PM (#22537524) Journal
    What we call health insurance in this country is actually a pre-paid health maintenance agreement. There is an insurance component, but by and large the costs are associated with routine care, not insured healt disasters. Right now, the closest thing we have is the high deductable health plans which work with a health savings account. In the HDHP, you pay every dollar of care out of pocket until you reach your deductable - about $2.5k for a single, or about 5-6k for a family. This excludes just about all routine care, which means that it doesn't kick in until you've hit a real stumbling block, healthwise. In return, the gov't lets you put away money, pre-tax, into an account (savings or investment) which you draw on to pay your health expenses.

    Everyone on insurance already has a "single payer system," it's just that the "single payer" is the group of health insurance companies instead of the government, but they act and think with close to one voice. Right now we aren't covering everyone, though we could for about 1.2T/yr through the existing private system*. It would be a significant burden if the cost were borne by employers, as most businesses just can't foot the bill for $8-12k/yr/employee, especially when the coverage could cost more than the employee's salary.

    Anyway, the point is that there may be two systems needed - one for health maintenance, and one for catastrophic coverage (which I like to call "hit-by-a-bus" coverage). As with all things, there are some gray lines at the boarder between the two. And this doesn't really address the DNA problem, though it would be reasonable to expect a test to get a rate for the catastrophic coverage, since that is a pretty straight forward way to more accurately determine risk, and no different than charging 22 year old males with sportscars more for auto insurance - even if the never drive more than 35 mph, and only take trips to church on Sundays. That's what probability and risk determination is about. If you don't like it, save your money yourself for that rainy day.

    I will say that I would prefer cancellable "term" policies rather than the annual individual policies that are common today. Right now, if you're too expensive, you can simply not be renewed. With a term (say, 30 year) policy, you have a guarantee of coverage for your term with embedded annual escalation and whatnot, just like life insurance. You might even get a product similar to whole life insurance, which guarntees your coverage until you die. (Note: just like life insurance, health insurance has caps on your benefits).

    As with all other things, there ain't no such thing as a free lunch, so the total money into the system = total money out of the system. There profit on gross in healthcare insurance is probably small, just like most businesses (2-8%). My point is that everyone can't just put in their $120/week, get routine healthcare (office visits, minor events, maintenance prescriptions, and some elective procedure) taken care of and then have a heart attack and run up a $280k tab, and expect the system to stay solvent. Healthcare is one area where manpower is necessary to get things done, and people who are competent and reliable cost a _lot_ of money to hire, train, and retain. Most people would be surprised to find that the job which pays them $25/hr requires billing them out at $75/hr to be worth while for the company (you know, that 2-8% profit margin). And hiring reliable people to work on the most basic parts of your health costs quite a bit more than $25/hr most places.

    *extend the federal employee group for BCBS standard to count every citizen, paid at roughly 100M policies at 12,300/yr, per http://www.opm.gov/insure/health/08rates/2008non_postal_ffs.pdf [opm.gov]
  • The more government regulates to turn insurance in to a welfare program, by refusing to let insurance companies charge according to known risk, the more incentive low risk people have to buy their insurance offshore, evading government regulation.

    This is beginning to happen already. Government refuses to let insurance companies exclude alcoholism because they don't want a lot of uninsured drunks clogging up the system. This hurts T-totalers like Mormons that could otherwise get a lower rate. Another exampl

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