Privacy & Healthcare
One of the dirty little secrets of bad privacy law is that it kills. People who are not comfortable with the privacy of their medical care may avoid getting needed care. That’s why privacy features in the Hippocratic oath. But few people want to study this issue, and studying it is hard–people are likely to lie about their behavior. So when I find examples, I want to post them. This one is an incidental mention from the Economist a year or so back, which I pulled from the magazine and lost on my desk until now:
In the short term, the case for strong privacy laws seems clear. Francis Collins, an official at America’s National Institutes of Health who led the American arm of the Human Genome Project, argues strongly for GINA. He claims that many people with genes worth studying are avoiding research projects for fear of facing genetic discrimination later in life. Never mind altruism, says Dr Cook-Deegan, many people are even avoiding genetic screening that could save their own lives.
The problem arises when one looks to the medium term. If genetic information is kept secret from insurers, but individuals have the freedom to add or drop insurance coverage, then problems of adverse selection may arise. People will be tempted to “game” the system. Those who test negative for a serious and costly disease may drop coverage, while those who test positive may add or increase coverage. Insurers worry this will lead to a collapse of their risk pools, and ultimately to financial ruin.
(“Do Not Ask or Do Not Answer?,” Economist print edition. Oddly, the printed page, which I saved, has this as August 25, 2007, under a different title than the Economist’s web archive.)
Ultimately, the concept of insurance is flawed to begin with.
The cost of repairing something that’s broken is fixed. The quantity of repairs can be statistically expressed as a percentage of the size of the population. No one participant knows if they will need to repair something or not. So they agree to pool their money together, invest that money for greater returns, and make the proceeds available to whomever actually needs to repair something. Everyone feels secure because the money is there, everyone puts in money because “but for the grace of God, there go I.”
In a sense, it’s voluntary socialism –(because if you think you don’t need it you can always opt out).
But what happens when more visibility is granted into whether it’s needed or not? The whole idea seems less worthwhile. If you know you don’t need it, you’ll leave, if you know you definitely need it, you’ll stay on. But then it feeds back into itself because as more people leave, the premiums for those left over goes up, making the premium less attractive (why pay $200,000 to an insurance co who’ll pay out $200,000 of coverage instead of keeping the money yourself).
So insurance today works only because of the unknowable element. Not quite voluntary socialism, but basically: gambling.
Yet knowing the unknowable ultimately reduces the overall cost and quality of care. So it’s ridiculous to cover it up. That means insurance interests are at odds with improved health care –indeed, if someone invented a “never get sick pill” there would be practically no need for insurance and they’d go out of business. So why should we care about their interests at all when they depend on our being in the dark and getting sick? It’s a macabre game.
The only way insurance companies could function with a 100% informed population is if the coverage were mandated (so even if you don’t need it, you have to pay for it so that others who do need it don’t have to pay as much). The only way a mandated system can actually work politically is if people don’t have to pay in proportion to their risk to the degree that it cripples them financially. Maybe the insurance companies have been wrong to use risk at all, since it sets up an us vs. them mentality.
So the problem can be broadly reduced to this: do we want all society to more or less equally share the cost and responsibility of keeping everyone healthy? Or do we want every man for himself? The more we know about genetics and risk factors, the closer we get to having to make that decision. Do you want to pay for an overweight lady’s diabetes amputation and medication? Do you want her to pay for your cancer?
The “good news” is that accidents are still unpredictable. So maybe that’s enough incentive for even the healthiest of us to pay into a system.
brain fart above
ultimately reduces the overall cost and quality of care.
should have said:
ultimately reduces the overall cost and increases the overall quality of care.
This is a bit off-topic, but if someone steals your identity, they can use it to obtain medical care in your name. And the hospitals, etc, will not be much help, because to tell you anything would be a violation of the privacy act (HIPPA).
So it isn’t just an issue of whether your genetic information is safe,it’s an issue of whether your entire identity is safe as well.
Beri,
Two comments:
1. The HIPAA claim is a lie. If the record is about you, they can give you the information. If it’s not, then it shouldn’t be attributed to you. Some lawyer will make a killing pointing out that institutions are talking out of both sides of their mouths.
2. It’s not your identity, it’s your dossier that’s at risk.