At first glance, an avantgarde diagnostic technique might seem to have little in common with a beancounter topic like insurance. The first glance couldn’t be more wrong.
Gene scanning means you’ll soon be able to find out just how susceptible you are to a whole series of diseases. And so will other people.
I’m not talking about general statistical statements, like “people who smoke have shorter life expectancies.” The favorite example to the contrary is Winston Churchill. What I’m talking about is the ability to test an individual and tell her (or him), “You have genes like Churchill. Don’t worry about a thing.” Or, alternatively, “Your gene scan was very interesting. You should be dead already.”
Gene scans, which use a new technology I’ll describe in a moment called gene chips, are still only a way of figuring out your chances of getting a disease, but these are your chances, not those of a large population, many of whom may be nothing like you. It’s a much more accurate and targeted guess. As the genetic influences on various conditions are worked out, it is, or soon will be, possible to test for genetic susceptibility to heart disease, cancer, Alzheimer’s, diabetes, arthritis, and obesity.
We’ve known about this possibility for years. What’s changed now is that the technology has caught up and it’s coming to a doctor’s office near you. It may not come this year, but maybe next year, and certainly within five years.
Let me explain what’s different about the new chips that’s brought the future into the now. That transition also means the ethical issues are going to become real decisions for real people. How much do you really want to know about what’s ahead, especially if you can’t do anything about it? Who pays for the tests, for prevention, or for treatment?
The “old” way of testing for genes involved chopping up a sample of DNA and sequencing a specific segment to see whether it matched the healthy gene or not. That process requires technicians’ time, several days, and ultimately interpretation done by a specialist. All that for just one gene.
Improvements to the old method came from miniaturization. Specific segments of DNA that were bits of healthy or diseased genes of interest could be attached in exact locations on a plate. Because of the way DNA works, precisely matching bits from the patient’s DNA will bind with those on the plate, forming a double-stranded segment. A fluorescent dye could be attached to the matched bits. Then, by the exact position where the matches occurred, it was possible to determine that the patient had, for instance, a match for Leiden’s Factor V blood clotting disorder or Huntington’s disease. There are thousands of segments on these arrays, which take a great deal of work and precision to prepare, and that makes them very expensive. They’re used in research or very specialized medical applications, but they cost way too much for routine diagnostics applied to the whole population.
The new method still uses segments that light up when matched to their opposite strand, but with one big difference. Each segment has its own small attached fragment of artificial DNA that has been engineered to provide a unique sequence, like a bar code. It no longer matters where on the plate a given segment lands. If it finds a match in the patient’s sample and lights up, then its attached “bar code” can be read to find out which gene is involved. There’s no need for all that ultra-precise positioning, and the results are much easier to read. It’s also possible to put many more genes on a chip since the molecules can be right next to each other. They don’t have to placed on a grid that a machine can handle, and even the best industrial-grade machines can’t handle a molecule-scale grid. The reduced precision and increased density makes this system orders of magnitude cheaper. Production models of these new gene chips are available now. The system is being readied for sale to doctor’s offices, starting late this year.
In the ads, the knowledge about disease susceptibility is used to apply treatment and lifestyle choices that avert the worst. That’s not a hard sell. But what about diseases for which there is no treatment? Should people get information about those too? That’s supposed to be a difficult question, and for the person involved, it is. For everyone else, it’s simple. It’s nobody else’s business. On an individual level, the decision to know or not to know belongs entirely to the person involved.
Much less simple is which costs others should assume if prevention would have lowered those costs but was not used. There are many separate issues here. Do we have the right to tell each other how to live for our own good? Do we have the right to tell some people to lead more restrictive, healthier lives because their genes aren’t as “good”? What level of genetic “load” has to be present before prevention becomes an obligation? What happens when the medical wisdom changes about what constitutes prevention? And those are just the questions that occur to me off the top of my head. Each of these would take a book to begin to answer.
The issue I’d like to concentrate on is “Who pays?”
Medicine is too expensive for individuals. There’s no way to go back to a system where everyone pays only for her- or himself. So the choice is between different kinds of insurance, and that brings us straight to what insurance companies will do with this knowledge.
Insurance companies will use it to slough off bad risks. They have so much to gain from a more accurate assessment of risk, that I’d be willing to bet they’ll be among the earliest adopters of diagnostic genome scans. Soon, it won’t just be former cancer patients who are uninsurable.
So what does that mean?
The whole idea behind insurance is that bad things don’t happen to most people most of the time. By taking a little bit of money from everybody, there’s enough money to tide over a few specific people who have problems. The bigger the group, the better this works.
Insurance companies necessarily insure only a subset of the population. If your risk pool is smaller than everybody, then the best thing you can do to improve profits is to get rid of bad risks. On the other hand, if your risk pool is everybody, prevention becomes the best way to spend less money.
The forces that drive private companies means that better risk assessment will necessarily cause private insurance to cease functioning as insurance, i.e. as a way of diluting risk. We can try to patch that with regulations and fixes, but the underlying gravity will always work in the same direction.
The forces that drive national (or, in some future enlightened age, global) insurance will mean that we have to come to grips with the issues around prevention. Specifically, how much prevention is it morally justifiable to require? And how much is practically feasible? (I suspect the answer to the last question is “none” at the level of the individual.) The underlying forces will push this system toward using knowledge to avoid disease. That could lead either to a totalitarian, webcam-in-every-fridge situation, or social policies that tend to result in health, like creating lots of parks and exercise opportunities. Or both.
So what gene chips mean is that our choices are now much starker. Gene chips can make the current unwieldy private insurance model completely unworkable. They’re going to make us decide: Do we want a “free market” for insurance companies? Or do we want health care? We won’t have both.