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."
Insurance policy (Score:4, Insightful)
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.
Um, how is that different from....? (Score:5, Insightful)
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.
Comment removed (Score:5, Insightful)
He who pays for the test owns it (Score:1, Insightful)
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.
Opening a can of worms here, but... (Score:3, Insightful)
It reminds me of... (Score:2, Insightful)
Comment removed (Score:3, Insightful)
Re:Making money versus helping people (Score:1, Insightful)
If insurance companies *could* get at the info.. (Score:4, Insightful)
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.
Re:Insurance policy (Score:5, Insightful)
Re:Socialized Medicine, Mandatory DNA Testing (Score:2, Insightful)
Blood Secrets (Score:4, Insightful)
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.
Re:Not discrimination (Score:5, Insightful)
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.
Re:Insurance policy (Score:4, Insightful)
If your insurance premium was per-life rather than per-year, then yes it might...
Re:Not discrimination (Score:4, Insightful)
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.
Re:Socialized Medicine, Mandatory DNA Testing (Score:2, Insightful)
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.
Re:He who pays for the test owns it (Score:5, Insightful)
- 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.
And a point from the article:
Re:Socialized Medicine, Mandatory DNA Testing (Score:4, Insightful)
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.
Re:Not discrimination (Score:2, Insightful)
Re:If insurance companies *could* get at the info. (Score:5, Insightful)
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.
Re:Opening a can of worms here, but... (Score:5, Insightful)
To use a real life example, does it make sense that the people in Nebraska should have to carry the insurance burden for the people who choose to live in hurricane alley?
Yes. If they don't like that, maybe they should move to a country where people care less about each other. Plenty to choose from.
Re:Not discrimination (Score:3, Insightful)
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.com] 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.
Re:Opening a can of worms here, but... (Score:5, Insightful)
I know it may sound heartless and uncivilized, but at what point is a person who is fundamentally broken down kicked off the public teat?
It not only sounds heartless and uncivilized, it actually is. Do you really want a society where there's legless people scrawling around on skateboards begging for food because they're "fundamentally broken down"? It wasn't that long ago we did, and I consider it progress that the developed world mostly doesn't have that anymore. Evolution has really nothing to do with it.
To use a real life example, does it make sense that the people in Nebraska should have to carry the insurance burden for the people who choose to live in hurricane alley?
I don't really know. But at least you can choose to not live in "hurricane alley". I'm not sure what the big alternative is here for people who are "fundamentally broken". Death?
Re:An ounce of prevention... (Score:5, Insightful)
In other words,
Re:Opening a can of worms here, but... (Score:4, Insightful)
Evolution is not a religion. It is not a guide for the proper way to live. It does not provide any of the answers for deciding this problem.
Just because Mother Nature does something one way, does not mean that this is somehow the best, most proper, fairest, smartest, long-term safest way, or that it has any other advantage except for the short-term survival-of-the-fittest well-not-actually-you-but-at-least-your-genes kind.
Mother Nature is a bitch.
You can argue to what degree humans should care and provide for other humans in a society, but do not use evolution as an excuse.
The insurance are NOT in the business of (Score:4, Insightful)
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!!])
Re:Insurance policy (Score:0, Insightful)
There, fixed that for you.
Whilst it's true that a predisposition to a disease is not a 100% guarantee that said condition/disease will be realised, the insurance companies' actuaries do need to account for the statistical probability that it will happen. I don't understand why people complain about insurance companies. They're businesses---not charities. If you don't like your rates, then don't purchase insurance and just pay cash.
If you can't afford cash, then bummer. Life's not fair, suck it up and deal with it.
Re:Insurance policy (Score:4, Insightful)
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.
Re:Thanks for the tip... (Score:4, Insightful)
I like the idea of a Health Savings Account in conjunction with a High-Deductible Health Plan [opm.gov]. 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.
Re:Insurance policy (Score:1, Insightful)
Forget nationalizing health insurance. What we really need is to cut costs.
The first thing is to fully fund medschool. That way we don't condition all our doctors to be money grubbing bastards just so they can pay off their egregious student loans.
Another thing is to find some way to reduce the legal costs of being a doctor. Here is a spot where a national health system makes some sense, not in some sort of mandatory replacement of the insurers but in a different fashion. All you have to do is say "the employer has all liability" when the employer is the state and just watch those lawsuits peter out for state-employed doctors. We already know what a pain in the ass suing the government is, it's time to put that societal quirk to work for us. That or some other system to pull the rug out for legal costs for doctors.
Fix patent law. If we reign in the drug companies so they no longer have the money to waste on the most well-funded commercials on television and have to spend it on research instead maybe we'll get some cost improvement.
There's a lot of things that are screwed up about our society that contribute to healthcare costing so much. It's naive to assume there is only one problem to fix. In fact I'll bet if we just made a national health plan it would cost more due to the rampant inefficiency of anything government run. Unfortunately I don't hold out much hope for this particular issue.
Re:Insurance policy (Score:5, Insightful)
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:Um, how is that different from....? (Score:5, Insightful)
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.
Re:Opening a can of worms here, but... (Score:3, Insightful)
Well, if you're talking about LA (Louisiana to those that keep thinking I'm talking about a city in CA) you might want to do just that.
Fully aobut 1/3 of the energy for the US comes in through, is processed/refined in this area. Also, a lot of the seafood of the US comes from here. Not to mention that all those nice farmed products from Nebraska has to be shipped mostly down the MS river through...where? Oh yes...the port in NOLA.
People that work in all those industries need to live near where those activities take place....so you just might wanna take up the slack for them down there.
Not to mention...we are ALL US citizens...we're in this together. Should we say FU to those people in CA where they heave wildfires and earthquakes....in the midwest where they have been having flooding....and tornadoes....etc. yeah...in the case of your argument....we might wanna all share the risk for the US as a whole, since we all depend on each other a good bit, and we all have risks inherit to our part of the country.
Re:Results often don't end up with the patient (Score:4, Insightful)
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.
Universal Health Care! (Score:2, Insightful)
Re:Thanks for the tip... (Score:2, Insightful)
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..."
Re:Insurance policy (Score:3, Insightful)
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....
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 the current "life expectancy" is in the mid-70s for a male in the US, a male in the US who lives to 65 is likely to live until he is in his mid 80s. For a quick example, imagine a society with a 55% infant mortality rate where everyone else lived between 100 and 105 years. The average "life expectancy" would be 48-49 years.
For purposes of social security system planning, the numbers that SHOULD be used are of those of ~18-65 years of age. Of course fixing the social security system would require fixing the government, and it might just be easier to reduce the life expectancy of adults who depended on decent medical care.