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Medicine Biotech Privacy

Privacy Fears Send DNA Tests Underground 222

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

    by blind biker ( 1066130 ) on Sunday February 24, 2008 @12:29PM (#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 Shuntros ( 1059306 ) on Sunday February 24, 2008 @01:04PM (#22535814)
    Don't be ridiculous. Here in the UK, as in Canada and a lot of other developed nations, technological advances such as this are hugely advancing prevention of inherited diseases. My ex, for example, discovered she had a gene which made her prone to a certain type of cancer, so the NHS (national health service) put her on regular screenings for it.

    Free health care doesn't have to mean lower standards. All the bull in the USA slating universal healthcare is coming from.... you got it, the medical insurance industry. Joe public believes what his TV tells him and falls for it hook, line & sinker. Sicko was a little biased, I'll give you that, but the points Moore made were 100% valid. I needed some antibiotics on a recent business trip to the USA and for a 5 minute consultation and 20 tablets it cost me $300. 'The greatest nation on earth'? Do me a favour!

    Go Clinton, I say. The USA needs a serious kick up the ass in terms of its view of healthcare.
  • by NIckGorton ( 974753 ) * on Sunday February 24, 2008 @01:12PM (#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.
  • by Mr. Slippery ( 47854 ) <> on Sunday February 24, 2008 @01:19PM (#22535910) Homepage

    Consider that the National Association for the Self-Employed... a front for MEGA Life and Health []. 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 [].

    Avoid NASE []. It's a scam.

  • by NIckGorton ( 974753 ) * on Sunday February 24, 2008 @01:49PM (#22536130)

    The more intelligent solution is to outlaw discrimination based on pre-existing medical conditions (thus destroying the business model of the insurance industry as it exists now in the US, which wouldn't be a bad thing). The point of the medical industry is to cure people. The point of the medical insurance industry is to make the most money possible. They are contradictory goals for which only legislation can facilitate a more rational change.
    Except that its the 'for profit' part that is the problem, whether its health insurance or health care delivery. For profit providers of health care also have the same problem (like the famously substandard care that is delivered at nursing homes owned by large for profit corporations.) And similarly, non-profit insurers (cough-Kaiser-cough) in the US are way not as evil as for profit ones. I have had several patients (in the sliding scale clinic where I volunteer 2 days a week) who sought individual policies who had pre-existing conditions - while none was offered any plan by BCBS, Aetna, Health Net, et al, Kaiser covered them all - albeit after I had to send a buttload of tests on some of them and one with an exclusion for one type of care. Kaiser is also one of the few insurers who doesn't as policy drop individual members when they become ill. But then they spend most of the money they take in on care, and none goes to profit. If you have to pay out 25% of your money as profits and administration, you gotta pinch pennies somewhere. Pruning the sick and expensive folks is easy and very successful!

    Its not rocket science: You can do health care for people or for profit. Not both simultaneously.
  • by big_paul76 ( 1123489 ) on Sunday February 24, 2008 @05:09PM (#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.
  • by Score Whore ( 32328 ) on Sunday February 24, 2008 @05:53PM (#22538684)
    No, I was just told a story by someone who can't even take the time to lookup which laws are relevant to the situation. The story was no more reality than your average night of WWE.

    Here's some problems with his story:

    - $6000 year maximum? Not at any job I've ever had. Think $1500 for deductibles and then you're done paying. Everything beyond that goes on the policy.
    - EMTALA is a subsection of COBRA and has nothing to do with continued coverage after termination. It has to do with refusing coverage and transferring patients. Another section of COBRA says is that after you leave your job, you can continue to pay the premium at the rate the company paid. No company pays $700/mo for their normal employees. The number is in the area of $200-$300/mo.
    - Employers with medical coverage also offer short term and long term disability coverage. For about $10/mo you're covered in the amount of 70-80% of your salary for varying lengths of time depending on the specific program. You don't need to stop receiving a paycheck because you're sick.
    - $2000/mo in expenses (not including a mortgage or rent)? I don't think so. My entire cost of living including rent, car payment, food, utilities, gas, auto insurance, etc. is about $2200/mo. Over half of that is rent. Someone who already owns their home (as posited in his story) will have living expenses in the sub $700 range. Add in his $400/mo meds and you're only at $1100.
    - For a home owner you're looking at somewhere around $100,000 (minimum) in equity that can be tapped. More likely in the area of $250,000 and possibly as high as $500,000-$1,000,000 (in the north east/north west metro areas.)

    He wanted to tell a story, and I'm fine with that. But don't think that his work of fiction is common. His story churned through $50,000 in 18 months. According to this [] the average cancer patient runs $36,000 in uncovered medical bills. The average seriously ill patient has $13,000. And these are the people who are declaring bankruptcy. Which is the point I was making. People who are prepared won't have this problem as they have been living prudently and have some savings set aside for a rainy day.

    Using the corner cases to determine your health care policy is dumb as they will suck up 100% of your resources.
  • by nanoakron ( 234907 ) on Sunday February 24, 2008 @10:43PM (#22541034)
    Just to finish addressing your point, most of which was already well covered by the previous poster:

    Newsflash, free shitty health care is available right now in the united states it's called the emergency room and just don't pay the bill.

    You do realise that you already pay for that out of your state taxes right? For the many millions of uninsured Americans (and illegal immigrants) without a primary physician or any form of preventative medicine, when a condition gets so bad that they have to turn up to the ER for treatment it is already funded by the hospital?

    The steps are thus:

    1 - Poor person has high blood pressure
    2 - Poor person has no primary physician and doesn't take antihypertensive medications because they're too expensive
    3 - Poor person has a heart attack/stroke
    4 - Poor person comes to the ER and if they're not already dead...
    5 - Poor person has angioplasty/bypass/coiling of stroke/neurosurgery - the US does have the best care available after all
    6 - Poor person spends days in hospital/ICU
    7 - Poor person discharged home without any means to pay for preventative medications etc..
    8 - Poor person is less able to work and contribute to the economy
    9 - Lather, Rinse, Repeat 35 million times over...

    Now, interventing at step 2, like most western nations with universal healthcare, prevents the number of people reaching step 3 and hence the much higher relative costs of steps 5 onwards.
    I'm not saying that steps 3 onwards don't happen in Canada, the UK or France, just that we have more people hovering at step 2.

    The kicker is this - you already pay for steps 4 through 6. Just as you say 'turn up to the ER and leave without paying the bill' - well, someone has to pay for it. That someone is the hospital, as mandated through a congressional bill. The hospital is not funded for this compulsory treatment however and therefore skims a little bit off everyone who actually has insurance instead. This puts your insurance costs up and hits you in the wallet, the only place you seem to care about.
  • by baboo_jackal ( 1021741 ) on Sunday February 24, 2008 @11:31PM (#22541346)

    Sort of like a nationally-applied, universally available fund from which to pay for healthcare? Really?

    No, actually, not at all. A Health Savings Account is an individually-owned savings account. Anyone who wants to do health insurance this way has to have their own, and provide all the money that goes into it. The catastrophic insurance is provided by private insurance companies, much like car insurance.

    Not at all like the NHS, the Canadian system, the French communal insurance system etc..etc.. at all...

    Correct. It's not at all like any of those things. In fact, I'm actually very relieved that it's nothing like the NHS []. I prefer my healthcare *not* to kill me...

    See, it all sounds good until you call it 'socialised medicine'

    No, I think an HSA is probably as close as you can get to the polar opposite of Socialized Medicine.

    In reality, you know it's better than the status quo, you just can't bring yourselves to admit it.

    ... Well, I believe that HSAs are a better way to provide health insurance than our current third-party payer system, and a *much* better way than Socialized Medicine. HSAs provide an incentive for healthy living, and for making economic decisions about your health, and about obtaining healthcare. The current way we do things in the US, and the national systems of health insurance in other countries provides exactly the opposite. I mean, don't get me wrong - "Free" healthcare sounds like a fair, nice, wonderful idea. But like anything else that's free, you find that you run out of it rather quickly.
  • by ArsonSmith ( 13997 ) on Monday February 25, 2008 @12:09AM (#22541608) Journal
    Many people sue for many things. More often than not they drop it or lose. Occasionally when they win something stupid it gets displayed all over the news so that is probably what you are thinking of.

    It's not thinking about weather or not you'll be sued that governs every decision, but whether or not you will win with little legal costs involved. Basically asking, "Is this reasonably safe."

The rich get rich, and the poor get poorer. The haves get more, the have-nots die.