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."
My experience as a phlebotomist (Score:5, Interesting)
Not discrimination (Score:3, Interesting)
Re:He who pays for the test owns it (Score:5, Interesting)
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]
Comment removed (Score:4, Interesting)
An ounce of prevention... (Score:5, Interesting)
Nothing to worry about, yet. (Score:3, Interesting)
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)
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!
Results often don't end up with the patient (Score:5, Interesting)
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.
Re:He who pays for the test owns it (Score:2, Interesting)
Re:Opening a can of worms here, but... (Score:5, Interesting)
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?
Re:He who pays for the test owns it (Score:5, Interesting)
Best regards,
UTW
Re:Insurance policy (Score:2, Interesting)
Re:Results often don't end up with the patient (Score:5, Interesting)
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.
Mod parent neocon troll (Score:5, Interesting)
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.
Nick
Institute of Medicine. (2006). Hospital based emergency care: At the breaking point. Washington, DC: National Academies Press.
The problem is that we call it "insurance" (Score:3, Interesting)
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)
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)
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)
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:Just get the insurance companies OUT of (Score:3, Interesting)
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
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
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
Re:Um, how is that different from....? (Score:1, Interesting)
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.