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."

My experience as a phlebotomist

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.

Results often don't end up with the patient

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.

Re:Results often don't end up with the patient

IAAP (I am a physician), and I can tell you that I *never* hesitate in giving patients their lab results, etc. I will even give them a copy of recent tests, etc. I only make a not of it in the official chart if the patient asks for copies of their entire record (but even then don't delay). Physicians are part of the service industry. If we don't serve, there are plenty of alternatives.

That being said, I've seen other medical offices in which their general policy is to avoid giving official documents to patients, in fear of litigation. My thought on the subject: A happy patient is less likely to sue, even if a mistake is made.

Um, how is that different from....?

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.

Re:Um, how is that different from....?

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.)

You're missing the bigger picture.

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:Insurance policy

Isn't this just another sign that the adoption of new technology (e.g. broadband) by the American public is slowing due to governmental and societal hassles? You don't have to be a wacko like Michael Moore in Sicko [amazon.com] to admire the benefits of a public health system. If people can't lose their coverage, people might not fear DNA testing.

Re:Insurance policy

The interesting thing is that if the US had a health care system based more around prevention rather than treatment (and that includes insurance companies as well), costs would probably be lower since it's often cheaper to 'treat' illness factors before they become a full disease. In the case of DNA testing, if it revealed I had a predisposition for a certain disease it's stupid for insurance companies to "punish" me for finding this out since I may be able to prevent it from ever becoming a really expensive problem, thus saving them money.

An ounce of prevention...

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.

Re:An ounce of prevention...

Consider that the National Association for the Self-Employed...

...is a front for MEGA Life and Health [businessweek.com]. Though they certainly try to hide it, NASE is not an actual indepentent "association", but the marketing arm of MEGA. Fortunately, the high-pressure sale techniques of the agent I encountered were enough to tip me off that something was wrong, and I Googled before I bought and so learned how bad the "coverage" MEGA provides actually is [boston.com].

Avoid NASE [google.com]. It's a scam.

Re:An ounce of prevention...

In other words,

1. if the investments lose money, you have no health care - they still get their cut
2. at age 65, we wash our hands of you, after taking our cut, so forget about all those expensive health problems old people have
3. its not insurance - if we lose money on you, we don't average it with other people in a collective risk pool - but we still get our cut
4. the premium never goes up - but medical expenses are increasing by 12% a year, doubling every 6 years. In 30 years, that $800k will buy $25k worth of health care in today's dollars. That will keep you in Depends in a nursing home for what, one year today?

Re:An ounce of prevention...

The statistic I heard (regrettably I can't find/am too lazy to try and source it now) was that in Canada, of every dollar spend on health 8 cents is administrative costs.

Versus 24 cents of every dollar in the US. And we have better overall healthcare outcomes. (Although to be fair, the US has some pockets of spectacular poverty without an equivalent in Canada, except for Vancouver's DTES, so the health care outcomes comparison is probably apples and oranges.)

So why not just, y'know, by an act of congress, make the government the single-payer for anybody who wants it? We basically did the same thing in the 60's when we brought in medicare, the doctors actually went on strike to try and prevent it, but it's a genuine Good Thing to have.

Re:Insurance policy

"In the case of DNA testing, if it revealed I had a predisposition for a certain disease it's stupid for insurance companies to "punish" me for finding this out since I may be able to prevent it from ever becoming a really expensive problem, thus saving them money."

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:Insurance policy

it's stupid for insurance companies to "punish" me for finding this out

Um, yeah, assuming that insurance companies are playing straight. But they're not. There's a million poeople in the US employed full-time to do essentially nothing but find ways to deny the insurance claims of people who have been paying health insurance premiums for years.

Compared to up here in Canada, you guys pay lower taxes, but I'm not ever going to be charged one cent for a medically necessary treatment. (granted we still have some catching up to do with europe on drug coverage...)

So, you can pay X% in taxes and have free medical. Or you can pay some fraction of X in taxes and make up the difference in health insurance, which may or may not cover you when you actually need it when you get cancer or something.

Who was that greek stoic who said "Call no man happy, until he is dead"? It's like that with insurance. Call no man insured, until he is dead.

Re:Insurance policy

Nonetheless, isn't there some kind of an economic argument that if insurance companies paid for people to avoid one big illness, with their longer lifespan they would end up costing the company more in smaller illnesses over time?

Plus, the quicker someone dies, the less chance they have of getting one of those expensive dieseases ...

Its like social security - a REAL patriot will die on their 65th birthday!

Re:He who pays for the test owns it

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

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

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

Re:He who pays for the test owns it

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.

- The simple solution would be to outlaw such questions from being raised

- 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.

Re:He who pays for the test owns it

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.

Except that its the 'for profit' part that is the problem, whether its health insurance or health care delivery. For profit providers of health care also have the same problem (like the famously substandard care that is delivered at nursing homes owned by large for profit corporations.) And similarly, non-profit insurers (cough-Kaiser-cough) in the US are way not as evil as for profit ones. I have had several patients (in the sliding scale clinic where I volunteer 2 days a week) who sought individual policies who had pre-existing conditions - while none was offered any plan by BCBS, Aetna, Health Net, et al, Kaiser covered them all - albeit after I had to send a buttload of tests on some of them and one with an exclusion for one type of care. Kaiser is also one of the few insurers who doesn't as policy drop individual members when they become ill. But then they spend most of the money they take in on care, and none goes to profit. If you have to pay out 25% of your money as profits and administration, you gotta pinch pennies somewhere. Pruning the sick and expensive folks is easy and very successful!

Its not rocket science: You can do health care for people or for profit. Not both simultaneously.

Re:He who pays for the test owns it

Except that its the 'for profit' part that is the problem

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

Best regards,

UTW

Re:Not discrimination

They can continue to do the same and it will be no more wrong than it is now.

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:Making money versus helping people

No. Because no one is subject to random economic events. Yes, people unexpectedly lose their jobs, but anyone who is well prepared won't be subject to significant risk because of that. They will have savings set aside and they understand that they will have the (federally mandated) option to continue their current coverage for up to 18 months if they chose to pay.

So, you are working hard at your job, have no consumer debt, own your home, and have $50,000 in savings (much better than most Americans, but lets go for a best case scenario.) Then you get diagnosed with cancer. So you start undergoing treatment, but because of the toll on your health, you have to quit your job. Your EMTALA mandated coverage is $700 a month for you, but you elect to pay it because otherwise you will be unable to receive your treatment. It will take $12,800 of your savings, but that is your first priority.

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.

Re:Opening a can of worms here, but...

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?

Re:Opening a can of worms here, but...

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:Opening a can of worms here, but...

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:If insurance companies *could* get at the info.

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.

Mod parent neocon troll

Why all the /. love for universal health care?

Its not just /. It cuts across the entire US population. And its for several reasons.

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

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

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

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

Nick

Institute of Medicine. (2006). Hospital based emergency care: At the breaking point. Washington, DC: National Academies Press.