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."

Comments

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

[NIckGorton]

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....?

[Solandri]

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

[CRCulver]

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 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

[Taevin]

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.

Re:Not discrimination

[Waffle Iron]

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:Insurance policy

[legirons]

"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?"

If your insurance premium was per-life rather than per-year, then yes it might...

Re:He who pays for the test owns it

[unlametheweak]

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

[Vellmont]

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...

[pclminion]

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...

[Vellmont]

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...

[tomhudson]

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:Insurance policy

[cayenne8]

"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...