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Privacy Fears Send DNA Tests Underground
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."
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.
If builders built buildings the way programmers wrote programs, then the first woodpecker would destroy civilization.
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.
There's an easy solution here:
Whoever pays for the test should legally own the result. So if you pay for it out of pocket, you own the result and it's up to you whether you want to share it with any third party.
If your insurance company pays for it though, then they have a perfect right to see the results.
Layering still more legislation on top of medical record privacy law is just going to add complexity to a system which is already drowning under its own administrative overhead.
*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.
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...
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I agree (as an evil socialist canadian ). The whole concept of "Health Insurance" is stupid. If you get car insurance, there's a chance that you won't get into an accident (especially if you are a good driver). If you get house insurance, there's a chance that your house won't burn down or be broken into. But with health insurance, you are guaranteed to collect 100% of the time. At this point health insurance is no longer an "insurance" business, and is now a "denial" business. It's sad to see.
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.
XML is like violence. If it doesn't solve the problem, use more.
There are many countries with public health insurance, and none of the have any such requirements. There's obviously no use to them if you can't deny coverage anyway. As to your story of healthcare being denied to some people: even if it's true (which it is not in my "socialist" country), it doesn't take away your option to pay for those procedures yourself. That shouldn't happen too often and even if it does, you're in the same position as you ALWAYS are in the US: ridiculously expensive healthcare.
Fleur de Sel
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.
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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.
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.
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But the NHS is not the only way to access health care in Britain, any more than the various provincial medicare programmes are the only way to access health care in Canada. If you are rich in Britain you can get faster care, just as in the US. Even in Canada we have an extremely steeply stepped two-tier system, in which the second tier is known as the United States, where the ultra-rich like Liberal politician Belinda Stronach go to get the treatment they deny others in Canada.
In the US you also have a multi-tier system, and this would continue under any regime that, like Canada, provided a basic level of care, including preventative care, to everyone. The current heavily socialized system in the US, which spends more public money per capita than the Canadian system, is extremely inefficient and ineffective because it is not able to focus on preventative care.
No system of health insurance can provide all the care that everyone needs. Someone is always going to get the short end of the stick, either by long waiting lists in a well-ordered public system or lack of anything but emergency care in the disorganized mess that the US has. Most of us think that some basic level of care provided by the public purse is a justifiable expense in a free and democratic society.
We also know that the expense of a public system pays for itself many times over. I for example am a Canadian entrepreneur whose business career has been made much simpler because my health insurance is decoupled from my employment. Thus, Canada gets a dynamic and successful small company--and small companies are the engines of employment and economic growth--whereas in the US I would have had to stick to my corporate job with attached health care.
And strangely, we don't have mandatory DNA testing here yet, nor is there any impulse to do so under a public system because everyone is covered anyway. Unlike private insurance companies there is no incentive under a single payer system for any of the invasive and stupid games that get played with medical data in the US.
Blasphemy is a human right. Blasphemophobia kills.
DNA testing will just be another way to make it more "fair" and "rational.'
... but that means nothing here. Our bureacracies are very different: their's works very well and has a much higher degree of trustworthiness than ours ever will.
That is, profitable.
I see some people from Europe and Canada posting here about how wonderful their respective medical systems are, and how America should move towards a socialized approach for our health care.
Might as well try to institute such a system in Mexico, or any other nation with thoroughly corrupt government and private sectors (like the U.S.) I mean, hell, we've been throwing money at the education system for years (sixty percent of my property tax dollars go to "education") and for all that we're near the bottom of the education heap. Why does anyone believe that throwing vast sums of Federal money at the medical system, thereby subjecting all of us to even more government scrutiny, will have a positive outcome? When will we understand that these people can't be trusted with the power they already have? Yes, I know that countries like Germany have a fine socialized medical system
Besides, people forget that we've already had socialized medicine in the U.S. for decades: it's called Medicare. Do want more of that? Yes, it's only for older people, or those of any age who have specific conditions (such as total renal failure) but it can hardly be pointed to as a successful operation from a cost-benefit perspective. Any national health-care system as proposed by some of our Presidential candidates would, in effect, expand the Medicare tax base to theoretically include everyone. Given the fraud and malfeasance and gross inefficiency of the current Medicare system, I simply don't believe that our government (or our health care providers) can be trusted with even more power than they already have. The way they handled Medicare has conclusively demonstrated that they are incapable of acting honestly and in good faith when it comes to health care.
I'm not saying they'd just make Medicare bigger: they'd probably establish an entirely new bureaucratic organization to handle a national medical system. What I am saying is that any such organization will be just as efficient and trustworthy as the DHS, the TSA or FEMA. It can't help but be anything else, given how our government works today. Furthermore, given the propensity for certain three-letter agencies to ignore their charters and lie to Congress, you can bet that socialized medicine would be a privacy disaster.
We'd probably be better off getting the food lobbies out of Congress and spending some serious money on public education, to teach people how to eat. Hell, if we just got a significant number of people to lay off the fast food it would cut the number of new diabetes and cancer cases. In the long run, if we became a healthier nation overall, we'd have less dependence upon advanced medical services.
The higher the technology, the sharper that two-edged sword.
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 risk, do you think that it would not be discrimination, that it would be just? It is a medical fact in the same right as genetic testing, you simply don't have to test for the black gene because you can see it. The same type of "facts" exist for asians, or women.
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.
AccountKiller
You have made a perfect argument for why health insurance in a community should not be the equivalent of gambling.
... like how likely your vehicle is going fail before the warranty is out.
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. Insurers use the game of having many people pay in, and only pay out to a few. This makes that coverage affordable. The problem is that this same system is 'for profit' and it drives up the cost of the covered medical treatments. The entire thing is about to crumble under it's own weight. I'd give you lots of links here but the current political campaigns have enough fodder for you to read.
If insurance companies CAN get your genetic tests, THEY WILL. It is in their best interest to do so. At that point, they have a vested interest in dropping coverage for you. What we have not yet seen is evidence that they are doing this. They are, there just is no evidence of it yet. The health system of this country is run by insurance companies. Have you looked at how much they spend lobbying the government? http://www.google.com/search?hl=en&output=googleabout&btnG=Search+our+site&q=health%20insurance%20lobby%20money Google shows 371,000 hits for this little topic.
Why? Why does a business need to spend that much money lobbying congress? It definitely is not so they can provide better service to the end users. If the health insurance system was not fundamentally broken already, it would not be a major issue in this upcoming election.
The idea that a company can deny you health insurance based on genetic testing is fundamentally a broken idea. (car anology) if you owned a Ford Edsel, would a mechanic ask you about your insurance before working on it? If you owned a Ford Pinto, would you have to pay extra to insure it? - yeah, bad example. but those same insurance companies would not pay out for the car-b-ques in the early days, and it wasn't till Ford admitted the defect that they paid out.
Now, hear we are talking about going to the insurance agent and asking to renew our policies with a full on inspection of our vehicles that includes what type of metal the brake system parts are made of, and a scientific explanation of how likely those parts are to fail under stress. It also includes all kinds of things
What all of these things have in common is that they are giving the bookie an unfair advantage in the wager. In the US, the bookies don't have to take your bet if it seems too much risk. Medical science is not making us safer, they are in fact putting us at risk because they are giving the bookies reasons to not want to take our bets. That is a fundamental failure of the system whose goal SHOULD be to reduce health care dangers, increase overall health of the community, and keeps us strong for the defense of the country, our economy, and general well being. Without fulfilling those goals, you might as well just go to the legendary Spartan health care system.
The system is currently broken and CANNOT support it's goals, nor can it live up to its promise to the community.
More and more, big business is failing to do what they are supposed to do. This is just another example of it.
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In other words,
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!!])
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I like the idea of a Health Savings Account in conjunction with a High-Deductible Health Plan. The idea is that you contribute a limited amount annually to a special IRA. Each year, you pay (tax-free) for your medical care out of that IRA until you hit your deductible. Then, everything's free. Next year, you contribute the same limited amount, the deductible resets, wash-rinse-repeat.
The neat thing is that you benefit from leading a healthy lifestyle, but you're still covered in case of some catastrophic health issue.
One secondary effect of using an HSA is that it makes routine healthcare decisions economic decisions. I think that's a good thing. Others might not agree. But I suspect that if everyone used these things, the cost of healthcare would decrease. Just my opinion.
Quite seriuosly, this is one reason why I wouldn't want to live in the USA: From what I hear about that country, pretty much every single decision is made based on whether someone can sue one over it - because sooner or later someone will.
It's probably not that extreme, but I do think it reflects on US American society that it has an image of being rabidly litigious. No troll intended, but if I lived there the constant fear of someone suing me over trivial nonsense would severely impact my quality of life.
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Once again we see why commercial health care doesn't work. The profit motive provides HUGE incentive to deprive people of coverage. A universal system, funded either by a universal flat levy or a tagged portion of tax, would make such exclusions both irrelevant and contrary to the PRIMARY goal of providing appropriate and sufficient health care to people who need it. The young and healthy of course subsidise the care of the very young and the old and the injured. That is what insurance IS: spreading risk across a broad enough group to make the final cost an average of the wellbeing of EVERY person. The US health care model is deranged and dysfunctional...and the big profits that generates sees it stay that way...and the propaganda that money pays for has for decades tricked Americans into thinking there is no better way. If they stopped warring with the world, the cost of meeting health care requirements would be easily funded by7 what is currently wasted on "defense" spending. Obvious enough to pretty much everyone everywhere.......
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It is a horrible idea, because market conditions do not apply to health care - there can be external costs when you decide not to seek care.
Because many diseases are contagious, your failure to seek care can affect not just you but everyone in the community. It is very bad policy to have a healthcare system that discourages you from seeking care - if you might have SARS, bird flu, TB, hepatitis, AIDS, herpes, or any infectious disease, it's in everyone's interest that you get your ass to a doctor before you spread your germs around. But high deductible plans encourage subscribers to not seek care: "Oh, it's probably just a cold, why pay for an office visit to find out for sure?"
The potential costs only get higher as the threat of bioterrorism grows. I can see it now: "We would have known about the attack sooner, but the vector was released at a Libertarian Party meeting. The first infected group all had HSAs and high deductible health plans, and most decided to save the cost of an doctor's office visit and tough it out...now the epidemic is raging out of control..."
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