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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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  • by anglico ( 1232406 ) on Sunday February 24, 2008 @12:18PM (#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.
  • Not discrimination (Score:3, Interesting)

    by icepick72 ( 834363 ) on Sunday February 24, 2008 @12:42PM (#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 NIckGorton ( 974753 ) * on Sunday February 24, 2008 @12:48PM (#22535690)
    Except that (given the current model of insurance and health care as a commodity rather than a human right) when you purchase and insurance policy they have every right as a business interested in making money to say: "Do you have any pre-existing medical condition or genetic predisposition to any significant medical illness?" If you say no when the answer is truly yes, you are violating your end of the contract. If that can be proved in the future by subpoenaing your private health care records or if you actually do something like the woman in TFA that reveals your genetic status in your health care records, they can cancel your policy, since you lied when entering the contract for health insurance.

    And since this is a business contract, your medical privacy is meaningless since the insurer can also (as a condition of selling you the policy) require you to allow access to all medical records and tests. Of course they likely won't do that unless you actually become sick and they have to pay money for your care. If they do, they hire people to scour your medical record for one slip up (like you may not have revealed you had a cold in December 1987 for which you were prescribed robitussin with codeine) as a means to void your policy.

    Events like the recent ruling in favor of a woman whose insurance was canceled while she was undergoing treatment for breast cancer (because she had failed to reveal a history of a heart ailment and she mis-estimated her weight) are unusual - but only in that the arbitration judge ruled in her favor. Most of the time, arbitration (which you must agree to when buying any private insurance - they all require it) goes in favor of the side with the best attorneys to back them. No surprise that the insurers love arbitration. However this case was so egregious that even the arbitration judge was shocked - for example by the fact that healthnet maintained there was no real harm to the woman from dropping her (since after a couple of months she was able to get care in a state program) or the fact that company documents revealed that employees of healthnet actually got bonuses based on the number of policies the were able to cancel for patients on whom the company was losing money (i.e. sick ones.) http://www.latimes.com/features/health/la-fi-insure23feb23,1,2680255.story [latimes.com]
  • Re:Insurance policy (Score:4, Interesting)

    by CRCulver ( 715279 ) <crculver@christopherculver.com> on Sunday February 24, 2008 @12:51PM (#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?

  • by Lorien_the_first_one ( 1178397 ) on Sunday February 24, 2008 @12:56PM (#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 pla ( 258480 ) on Sunday February 24, 2008 @12:59PM (#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).
  • Re:Insurance policy (Score:5, Interesting)

    by tomhudson ( 43916 ) <barbara.hudsonNO@SPAMbarbara-hudson.com> on Sunday February 24, 2008 @01:01PM (#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!

  • by weston ( 16146 ) <westonsdNO@SPAMcanncentral.org> on Sunday February 24, 2008 @01:09PM (#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 KDR_11k ( 778916 ) on Sunday February 24, 2008 @01:12PM (#22535868)
    Under the condition that the subject of the test must not be coerced or required to take the test, I agree. That would include any form of explicit or implicit requirement, e.g. for employment the employer would not be allowed to require or encourage DNA tests (by preferring candidates who subject themselves to the test).
  • by antifoidulus ( 807088 ) on Sunday February 24, 2008 @01:16PM (#22535886) Homepage Journal
    You are taking a VERY individualist view of evolution. Humans are a social animal, we can all gain from contributions from even the weakest(physically) members of society. How many artists, inventors, scientists, mathematicians etc. have had physical abnormalities(maybe even sometimes genetic) but have nonetheless contributed to the advancement of our species?

    Killing anyone who has a disability(or just leaving them to fend for themselves) probably does not bode well for the longevity of your culture. There have been groups in history that killed any young that had abnormalities, one of the most famous being the Spartans. You don't see their culture dominating the globe, do you?
  • by unlametheweak ( 1102159 ) on Sunday February 24, 2008 @02:08PM (#22536302)

    Except that its the 'for profit' part that is the problem
    That is pretty much implicit as to what I was saying. I think universal health care like we have here in Canada would be the most fair and utilitarian solution. The main disadvantage is that the rich would not be as advantaged, like having faster access to non-emergency or non life-threatening care. The free market people can bitch all they want, but I know (and yep it's anecdotal) from personal experience (through many friends and relatives) that if people need (for example) cancer treatment, or therapy for a stroke; they will get it pronto and it won't be in some cheap third world style clinic. No it's not free; we pay for it through our taxes. But since everybody pays for it and there are no sales people or middlemen making money, it's overall cost is cheaper than it is in the US. It may not have the polish and shine that a CEO wanting health care would want, but it works. And yes universal health care is not directly on-topic so I was avoiding stating it explicitly.

    Best regards,

  • Re:Insurance policy (Score:2, Interesting)

    by headpushslap ( 583517 ) on Sunday February 24, 2008 @02:26PM (#22536498)
    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]
  • by MMC Monster ( 602931 ) on Sunday February 24, 2008 @02:47PM (#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 NIckGorton ( 974753 ) * on Sunday February 24, 2008 @02:55PM (#22536772)

    Why all the /. love for universal health care?
    Its not just /. It cuts across the entire US population. And its for several reasons.

    First, with more and more people who are uninsured or underinsured, the experience of finding oneself with a serious illness and no way to get help without bankrupting yourself and your family is becoming more common. This experience is also entering into the middle class (and even upper middle class) ethos because its not just a poor person's problem anymore.

    Second, any idiot with a modicum of intelligence can see that the US health care system is failing the US population. Even those who are insured cannot be guaranteed care when they need it. The US is undergoing an emergency care and on call crisis due to the problems created by uninsurance. If you are a specialist and agree to be on call for a hospital, or you are a hospital who has an ER, or if you are an ER physician on duty in those hospitals, you are bound by the EMTALA law which says you have to provide care for all medical emergencies regardless of ability to pay. This unfunded mandate is pushing emergency care to the breaking point. From 1993 to 2003 in the US, 425 hospital EDs closed their doors; the number of ED visits rose by 26% during the same period (Institute of Medicine, 2006). Moreover try to find that on call neurosurgeon you need to drain your epidural hematoma or the hand specialist to reattach your finger in under 4 hours. Specialists are now refusing to take call because it makes them vulnerable to provide uncompensated care. So while years ago, it was only the poor who suffered, now even the insured are suffering because ERs are overcrowded and specialists are just unavailable. (See what's going on in LA's now as its emergency system implodes if you would like an example.)

    Third, (and this is the only thing that has kept me from leaving the US to practice in Canada), I genuinely think the American people are good and want a system that provides people health care just like we provide every child an education and other services like EMS, fire, and police. When bad things happen to others, I think Americans really do want to help. I saw that when I was a chief resident in the ER at Brooklyn's largest trauma center on Sept 11, 2001. We saw it in the actions of individuals and organizations to help NOLA after Katrina when our government stood by with its hand up its ass. Most of us, at heart, are not hateful neocon hawks. However, the hateful neocon hawks have pretty mighty propoganda machines and they were able to fool a lot of people a lot of the time. But eventually we do come around. Witness the phenomena of Evangelical Christians who won't vote Republican because while they don't support abortion rights, or my right to marry my partner, they think that the US's inaction in Darfur, the war in Iraq, the fact that Americans are dying as I type this from preventable diseases, the fact that poor children are abandoned in drug and gun infested warehouses that used to be schools are far worse tragedies than the fact that I have buttsecks with the man I call my husband.

    And I would damn rather work in an organization with one of those folks or have one as my neighbor than you. Because she and I would both be Americans who love our country and understand that diversity of beliefs are OK, but that first and foremost we have to ensure that there is social justice, that every child has an education, that every person has health care when they need it, and that our military and our political capital is spent on real problems like resolving the tragedy in Darfur and creating freedom in China rather than creating a profit for Haliburton.


    Institute of Medicine. (2006). Hospital based emergency care: At the breaking point. Washington, DC: National Academies Press.
  • by Overzeetop ( 214511 ) on Sunday February 24, 2008 @03:59PM (#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]
  • Re:Insurance policy (Score:5, Interesting)

    by big_paul76 ( 1123489 ) on Sunday February 24, 2008 @05:03PM (#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:Insurance policy (Score:3, Interesting)

    by umghhh ( 965931 ) on Sunday February 24, 2008 @05:55PM (#22538696)
    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 makes it not a big surprise that health system generates profit not health gains. I am not saying that this focus on profit is bad but if left without control health system will deteriorate and old and weak will be left behind.

    It is interesting to see Germany where I live for number of years. There are two health insurance systems there: private and state controlled. State controlled has a costs & efficiency problem which makes them avoid certain types of cures and medicaments because they cannot afford them (or so they say). Private one is suckers choice - if you are young you pay much less than in state one, only any change of insurer is a bite in the wood - you lose part of cover for the illnesses that you had and that could leave lasting damage. On top of it you have German specifics: state controlled system covers the whole family also when only one person works and pays. Once private it is difficult or close to impossible to switch back.
    The whole thing is an absolute disaster of course but not for the companies and health officials. How surprising.

    There is relatively simple cure for this - you can allow private companies to work on health insurance market but on licence base. It would allow licensee to operate (and profit) under condition: it is obliged to provide basic service to every citizen that asks for it. All citizen that are not on the dole have pay this basic service fee and be insured - this provides for the huge market and lets insurer hope for a massive profits in they do things right. Those on dole gets this done by the state as it is the case anyway. This could get rid of the problem described in TFA too. One can hope that the companies would be interested in prevention instead of litigation then.

    Or maybe I am being naive again. I believe Holland is trying some version of such system though - anybody from NL here?
    But of course any change is difficult especially if one sits on money of others as is the case of current health officialdom in almost all developed countries.
  • Re:Insurance policy (Score:3, Interesting)

    by CrimsonAvenger ( 580665 ) on Sunday February 24, 2008 @07:33PM (#22539644)

    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....

  • by ScrewMaster ( 602015 ) on Sunday February 24, 2008 @10:02PM (#22540764)
    They already foot the bill for the military, let 'em foot the bill for health care and for the same reasons.

    Do you have any idea how corrupt and wasteful the military/industrial complex is? It's too bad my father isn't still around: he'd enlighten you in great detail. The reality is the government does nothing efficiently. That's not always bad ... I'm glad the DHS and TSA aren't very efficient at what they do. But when it comes to providing certain kinds of services you don't want the Feds directly supplying them: traditionally, the best solution is usually a heavily-regulated private sector (the old Bell System was a good example of this.) Unfortunately, our government's ability to effectively develop and enforce such regulation is severely handicapped nowadays.

    That would be the federal government's sole responsibility, not deciding on treatment or deciding anything else.

    You making, I believe, the fundamental mistake of assuming that the government would handle matters any differently. It won't. Both gain and maintain power by a form of elitism created by having the power to exclude. Once they can tell you "no, we won't treat you for this condition unless ..." they own you. If you think government types aren't as addicted to that power as those who run insurance companies, you're fooling yourself. You can bet your left kidney that any legislation written to create a nationalized health care system would grant the bureaucrats the same (or greater) power that Medicare officials have in determining who gets treated and for what. They won't be able to resist the opportunity for a further extension of their already-excessive power base.

    The ultimate problem is one of the middleman. The system has completely divorced the cost and availability of medical care from our ability to pay for it. That's what middlemen do, when you get right down to it, all the while picking off a healthy chunk of each transaction for themselves. In the long run, it's irrelevant whether that middleman is a regulated publicly-held corporation, or a ballooning government agency. Corruption will occur, bureaucracy will grow exponentially, with health care providers and equipment suppliers milking the system all down the line. That's the way things run in this country today, it's the way Medicare has always been operated, and expecting a completely nationalized system to work any differently is naive. When leaders (or potential leaders) claim otherwise, they are being utterly disingenuous, and immediately disqualify themselves for my vote.

    I'll say it again, because it bears repeating ... just because socialized/nationalized medicine works for other societies, other cultures, has no relevance to whether it will work for us. Our own history is pretty clear on the fact that it won't. One wonders where our Canadian friends will go for lifesaving treatment when their system puts them on a waiting list, and we Americans have completely screwed up by letting the Feds run the show.
  • by Anonymous Coward on Sunday February 24, 2008 @10:31PM (#22540962)
    I guarantee you if people could only have their rates be considered higher than the least expensive offered rates for events under their control for health insurance then the available pool of underwriters to actually cover those claims would be destroyed in short order. The only other alternative would be the lowest rates would be raised for EVERYBODY, and you'd simply see less scaling between their lowest and highest rates. Tighten that far enough and you really WOULD have universal public health care, but with complete socialism that would give some reason to foam at the mouth.

    People do not seem to understand the fact that the reason rate are higher for such predispositions is that the insurance companies have direct statistical correlation from their history of claims that shows these people are this percentage more likely to cause a paying out. The bigger problem that I see is the COSTING of the medical care itself. With a hospital stay for a serious cardiac, pulmonary, cerebrovascular, or even random physical accident event in the USA costing from the hundreds of thousands to the millions, these insurance companies are basing their estimates on retardedly high "necessary" coverage limits. This cost then gets passed into the insurance industry, into american HMO's and even foreign travel medical insurances, or foreign companies that underwrite such operations. Which then then include in the costing of their insurance.

    The real problem I see is the cost of health care, not the impact of insurance companies knowing near every possible predisposition. Whether you want "Economic driven" health insurance or not, the money to pay the hospitals has to come from somewhere.

"An organization dries up if you don't challenge it with growth." -- Mark Shepherd, former President and CEO of Texas Instruments