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.