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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."
can they change the colour of this thing in my hand?
bomb the us up set someone
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.
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.
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.
More and more aspects of that movie are becoming reality. I am not comfortable with this aspect of our future, guys. This is not good.
"The agriculture ministry is not in charge of Gundam" - Japanese ministry official.
Comment removed based on user account deletion
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.
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
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.
The diversity and expression of human opinion is essential to human survival.
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.
--
make install -not war
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.
"Luck is my middle name," said Rincewind, indistinctly. "Mind you, my first name is Bad." -- Terry Pratchett
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.
Tweet, tweet.
You begin living as frugally as you can, but the bills keep mounting. Your insurance has a $2,000 deductible per year, then you have to pay 10% of costs up to a maximum out of pocket of $6,000 per year. So the first several months, you pay out $6,000, but then the first of the year hits and you again have to pay $6,000 in the first few months of the next year. So your $50,000 in savings is now down to about $25,000 just with your out of pocket costs and paying 18 months of EMTALA coverage.
The chemo and radiation you receive gives you profound weakness and nausea/vomiting. Unfortunately the inexpensive antiemetics phenergan, compazine, and reglan all give you a severe dystonic reaction. So the only one you can take is zofran, which your insurer refuses to pay for because its non-formulary. You only use it for the worst days after your rounds of chemo and split pills when you can, but its the only thing that will help. Even ordered online at the cheapest Pharmacy you can find they cost $10 a pill. So you end up spending an extra $300 per month for medicine in addition to the $15 per month copay each for your other half a dozen medicines. So your out of pocket drug costs are $400 per month. That plus your bare minimum living expenses (food, utilities, tax on your house, travel to and from the hospital) are about $2000/month. So by the middle of the year, your savings have dwindled to almost nothing.
So you begin borrowing by taking a loan out on your home, this gets you through the end of the year and into the beginning of the next. Unfortunately, as a result of the treatments, you suffered a mild stroke and now have to walk with a walker. So you begin the laborious process of applying for disability. You are initially denied, and hire a lawyer who works on commission, but he tells you it will probably be a year or more before you get disability (and hence medi-medi coverage as well.)
I'm getting tired of writing this, and depressed because its all too common. Over half of people in the US in 2006 who filed for bankruptcy did so because of health care bills. Over half of those were employed and insured when they became ill. Don't fool yourself into believing that you can render yourself immune from this should you lose your health and hence your usefulness to a capitalist society. We discard 'useless people' like yesterdays newspaper. And the only reason it hasn't happened to you is you are still producing.
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?
Monstar L
- 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: 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. I will tell you that if insurers have this information then they will take steps to discriminate and obfuscate this discrimination as best they can. Like any other multi-billion dollar industry, these people are not fools or philanthropists; they will use creative accountants (think Enron), statisticians (think Ford Pinto), lawyers (just think, no explanation required), lobbyists, MBAs, etc to get what they want and minimize any adverse effects of their image.
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.
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
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.
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?
AccountKiller
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.
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!!])
MSBPodcast.com The opinions expressed here are my own. If you don't like 'em... Think up your own stuff.
Its not rocket science: You can do health care for people or for profit. Not both simultaneously.
Best regards,
UTW
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.
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.
No, actually, not at all. A Health Savings Account is an individually-owned savings account. Anyone who wants to do health insurance this way has to have their own, and provide all the money that goes into it. The catastrophic insurance is provided by private insurance companies, much like car insurance.
Not at all like the NHS, the Canadian system, the French communal insurance system etc..etc.. at all...
Correct. It's not at all like any of those things. In fact, I'm actually very relieved that it's nothing like the NHS. I prefer my healthcare *not* to kill me...
See, it all sounds good until you call it 'socialised medicine'
No, I think an HSA is probably as close as you can get to the polar opposite of Socialized Medicine.
In reality, you know it's better than the status quo, you just can't bring yourselves to admit it.