Gene Scans and Single Payer Health Insurance

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?

Gene chips

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.

Ethical issues

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.

Double-blind cross-post

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20 Comments

Filed under 13_quixote

20 responses to “Gene Scans and Single Payer Health Insurance

  1. Wow, great post, Quixote.

    Do we want a “free market” for insurance companies? Or do we want health care? We won’t have both.

    This is so right on.

    Right from the beginning of the post, I was thinking that all the gene chips in the world don’t even matter as long as one of the most important indicators of one’s life expectancy, irrespective of genetic predispositions, is how much money they have–because you’ve still got to buy access to healthcare in America.

  2. I have asthma and other allergies, and Depression. Part of me wishes that my wife and I could have manipulated our children’s genes in the womb to make sure that neither develop any of those conditions, or others that we don’t know about yet. The other part of me understands just how much evil can be accomplished by those with the best of intentions and motives.

    This is scary stuff, because I believe that we will use this type of knowledge to exclude and handicap people rather than use it to truly help society.

  3. Pingback: University Update - Diabetes - Gene Scans and Single Payer Health Insurance

  4. Until there are iron-clad safeguards about how the information is to be used, I am not going to get gene-tested.

    Right now, as a result of having several conditions that, in me, are benign, but which, statistically, are potentially high-risk, I can barely afford my health insurance as it is – the insurance that I can get.

    I used to be a person who believed very strongly in preventative medicine, of keeping tabs on what my healthy baseline is. Now, I am almost afraid to go to the doctor, for fear that they might find yet another “pre-existing condition” that will result in further denial of insurance, and higher rates.

    (Since I move from state to state a lot to be with my partner, and I am not married, I usually have to get a new plan each time I move, since I have yet to find a plan that is nationally recognized in every state. So I’m always hoist on the “pre-existing” clause, even if I’m diagnosed with something while insured.)

    If it weren’t for my fears about catastrophic illness or injury, I’d be tempted to forgo the whole thing entirely; doctor’s fees are _far_ cheaper than my insurance costs.

  5. Oh, I also tend to work part-time or as a temp, as I am an underpaid freelancer – and thus, coverage by an employer isn’t possible either.

    The insurance racket sucks balls, and not in a good way.

  6. mamajane

    The insurance racket is such that my husband has stayed in the Navy all of these years primarily for the health care. Our two boys and myself have minor, but chronic, health conditions that would render us almost uninsurable in the civilian world. What’s that you say, “I’ve heard that the military health-care system is almost as big a clusterfuck as the rest of our military ops?” Why yes, it is, but it is still health care nonetheless, with no copays and free prescriptions (from military hcf’s).

    This is indeed disturbing news, as surely the government will likely eventually use it to screen out “undesirables” or “heavy users” like my family.

  7. Part of me wishes that my wife and I could have manipulated our children’s genes in the womb to make sure that neither develop any of those conditions,

    They have just done that very thing here in Spain. (Horrid Socialized medical sysem.) A couple who were carriers of Cystic fibrosis through their genetic makeup just today had a pair of perfectly healthy twins thanks to this very technique. And guess what. It didn’t cost them a dime.

  8. Our multiple-payer health insurance system has been falling apart for several decades now. Adverse selection, increasing employer push-back against the cost increases and the social costs of the growing class of uninsured have all been accelerating the rate of collapse. The sound you hear is the dam shifting on its foundation, about to break. The roar you’ll soon hear is the gene scans giving the structure the final push that makes the collapse sudden and complete. Then we can start to pick up the pieces and build something that works.

    Great post!

  9. Stayss225

    Wow. Maybe it’s the time of day or just a sign of the times. Butt sex gets 64 comments and this horrifying glimpse into our future gets (so far) a total of 7?

    A health insurance company basically killed my mother with denial of coverage, declaring stem cell treatment for non-Hodgkin’s lymphoma “experimental”. The lawsuit to make them cover it took exactly long enough for the cancer to spread to her bones, and her projected survival rate, a not-good-enough-for-the-risk 25% chance quickly went to 5%. Even until she was admitted for the procedure, the insurance company was calling to remind her of the unlikely chances of success, and that “she need not put herself through this…” My maternal grandmother died of the same cancer, after my mother. The oncologists stated that non-Hodgkin’s genetic links are unsure and unproven. And BTW, this was at Barnes-Jewish in St. Louis, MO, I believe at the time the #2 success rate bone marrow transplant center in the US.

    Point being for me, that I would never consider undergoing a gene scan for any reason. The only health insurance I have going for me is the old adage, “only the good die young”, and if that holds, I’m all set.

  10. Wow. Maybe it’s the time of day or just a sign of the times. Butt sex gets 64 comments and this horrifying glimpse into our future gets (so far) a total of 7?

    I wouldn’t weep for our future just yet, Stayss225. Every once in awhile, I open “de-lurking” threads, to give lurkers a chance just to poke their heads up and say hi. And, without fail, some people will say they don’t comment because they feel out of their league. (I wish no one would feel that way; I’m just a douche with an internet connection after all, lol.)

    I suspect that it’s not just lurkers who feel that way; people probably tend to comment on things where they feel most secure or where they have something specific to add. Ergo, the more wonky (or sciency) the post, the fewer the comments.

    I read lots of science blogs, but I’ve commented on very few.

  11. Stayss225

    OMG, and not kidding even a tiny bit…The Queen has adressed me directly, and I am giddy. Although I haved been justly called out as a lurker, she was kind and benevolent…I am huge fan (and apparently now also an ass kisser), and just glad to have something good to read everyday. Love what you guys do, and you’re absolutely right, I sit at times thinking there’s something I’d like to say, but the health care issue pisses me off so thoroughly that it pushed fear to the side. I shan’t make a nuisance of myself. Back to lurker status now…

  12. Stephen: we will use this type of knowledge to exclude and handicap people rather than use it to truly help society

    I think that’s why knowledge is said to push you out of paradise. It’s only a fool’s paradise, but we take what we can get. Knowledge takes away the excuse that stuff just happens that way. We get to decide, and what happens is our fault. The good news, of course, is if it’s in our hands, we could also do it right … ??

    Grumpy: here in Spain. (Horrid Socialized medical system.) A couple who were carriers of Cystic fibrosis … had a pair of perfectly healthy twins thanks to this very technique. And guess what. It didn’t cost them a dime.

    Goddammit, Grumpy, you just don’t get it, do you? How are we supposed to remember that the Good Ole USA has the best health care, and the best doctors, and the best Everything, with people like you and Michael Moore around? If you’d only report the good news, like … like …. Well, see, if you’d take the trouble to report it, I’d know what it was.

    Stayss225: Back to lurker status now… Noooo! Come baaack! It’s like the Car Talk guys say: I can’t afford to lose any commenters! 😉 And besides, I love comments. You folks spark all sorts of ideas in my head, and then I have to control myself not to take over the comment threads.

  13. christine

    Gene scans aren’t the only way that insurance companies are dropping people. Many years ago, the various HP offices could contract with ‘local’ insurance companies. It wasn’t necessarily a company wide contract with a single insurance company. The HP office that my dad worked out of had a contract with John Deere insurance. The next year John Deere refused to ‘bid’, extend, whatever another contract with the office. The reason…. my mom’s chronic illnesses cost them too much, or at least that’s what was stated by John Deere. (mom had CMT, asthma, and allergies at the time – all genetic and not much to ‘fix’ them permanently).

  14. Erin M

    Well, this one brings up a lot of questions/issues for me, and I’m not entirely sure where to start. Let me just lay it out and see where it goes.

    First, this is a favorite boogeyman of the right on the whole national insurance issue (“You complain about wiretapping but you’d give the government your medical records/genetic map?!”). They might have a point there, but it seems like there’s a weak spot in it, considering how much data the government has and the fact that, ostensibly, it’s kept secure. What do they do with the records of Medicare patients, for example? I’m sure they have a procedure and, so long as we keep the oversight on, we can deal with it, right?

    Second, keeping this information where it belongs: between patient and doctor (and possibly insurance provider, as discussed above). There needs to be an absolute firewall to keep this info from being used for hiring/firing purposes, for example. (One bit of paranoia I’ve picked up from watching too many cop shows: no matter how well I might “pass” as a transperson, my genes will always rat me out, nevermind a company saying something like “Well, your genes say you’ll probably keel over from a heart attack at 40, so we don’t think it’s a wise use of our resources to hire and train you when this other candidate looks fit to live to 75.”)

    Third, the genetic tinkering issue, which other people have addressed. Google “Buck v. Bell” for how that played out in the 1920s, and those were the so-called progressives pushing the policy.

    On the whole, though, I think Madison Guy has it right. If this becomes a wide-spread practice and a prerequisite to getting and/or keeping private, profit-driven insurance, the system is going to fall apart completely, and we’ll have to try something new by default.

  15. a different kathy a

    good post. i want to point out that genetic profiling may not be an individual choice — that i could see insurance companies excluding blood relatives of someone who tested high risk. the privacy issues are huge.

    i don’t think most people are aware of this, but all states collect DNA samples from certain offenders or suspects. many of these are then compiled in a national databank. samples are retained by police agencies — sometimes even when a suspect is NOT convicted. courts have *not* found that involuntary collection of samples violates the 4th amendment or privacy interests of the individuals.

    while these programs say they are merely to help identify criminals and solve crimes, the programs keep expanding and evolving. there are concerns that samples could be tested for certain genetic traits in the future. the laws permitting the collection and testing of these samples say they will be kept private — but personally, i harbor doubts about the willingness of these agencies to protect someone’s privacy, when they don’t think it is an invasion of privacy to forcibly take blood and saliva samples without probable cause.

  16. I shan’t make a nuisance of myself.

    Nooooo! Make a nuisance! We loves nuisancies!

  17. Ms. Clear

    There’s no way in hell I’d have genetic testing done…….EVER…..EVER…..EVER, unless we had an ironclad, universal health care system.

    That and the movie Gattaca really freaked me out.

  18. Kate217

    “Gattaca” was exactly the image I got when I read this. It terrifies me. Thanks for the post, Quixote.

    Stayss225, don’t worry about the ass-kissing. Liss’s ass is an irresistable lip magnet. Resistance is futile. 🙂

  19. I shan’t make a nuisance of myself.

    Nooooo! Make a nuisance! We loves nuisancies!

    Ask and ye shall receive.

    I agree with the policy side of the post, but I really am not certain how realistic the medical assessment is. With some obvious exceptions (e.g., Huntington’s), even when there is a ‘strong’ effect of a given gene (actually, a particular variant or allele of a gene), the non-genetic component is usually much stronger (i.e., the breast cancer ‘gene’ does increase the relative likelihood of breast cancer, but the absolute probability is anything but 100%). When one considers that many diseases will involve multiple genes with different ‘amounts’ of effect (and that these ‘amounts’ will themselves be vary based on other genes), prediction will be inaccurate. And that’s before one thinks about being able to accurately assess effects in light of the number different combinations of allelic variants. I think using genomics (including microarrays) to assess outcomes will be a very imprecise science. GATTACA was a great movie, but I don’t think we’ll ever be able to do that.

    Mind you, I think insurance companies will use anything, including crap science, to deny coverage, but I’m not convinced they’ll have good grounds to stand on when they do (but never fear! The Roberts Court is here! Erm…)

  20. Mike: even when there is a ’strong’ effect of a given gene … the non-genetic component is usually much stronger

    I think insurance companies will use anything, including crap science, to deny coverage

    You took the words right out of my mouth 😉

    Seriously, let’s even grant that more research makes the data quite solid. (You’re right that at this point there’s a great deal of hand waving, and vast stretches of white space on the map marked with nothing but “here be dragons.”) The genetic component (even when the lifestyle or environmental component is larger) would increase insurance company risk in the actuarial sense. I’d be willing to bet the farm the companies will use that the way they usually do.

    Re: the privacy and use-of-data concerns several commenters have addressed: that’s one of the most important things about knowing this stuff is coming down the pike. We really, really, really have to be sure that privacy laws catch up to technology, that individuals control their own data, ALL of it, and that the hell is regulated out of any agencies or companies that use personal data. I mean everything. From simple things like not being on spam lists, right up to your DNA data and iris scans.

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