GINA—why we should make it irrelevant

GINA, the Genetic Information Non-discrimination Act, has been passed by the House and the Senate, and will be signed by the president. Others have explained some of the implications of the bill, but the need for the bill is a grave sign.

GINA is a symptom…a symptom of a diseased health care system. Health insurance works by pooling risk. Ideally, an insurer will take as many people as possible, regardless of their health histories, and the premiums of the healthy will support the care of the unhealthy few. Of course, insurance companies aren’t stupid. They would rather have the healthiest people possible…every penny the don’t spend is profit. That is why a small business, such as mine, will see rates skyrocket if someone gets sick. The risk isn’t being widely pooled, and the cost is being passed on to a few.

GINA isn’t necessary in most of the world (forget for a moment that most of the world doesn’t have money to spend on genetic testing). Most industrialized nations have some sort of universal health care—risk is pooled widely, in fact the pool includes the entire population. There are problems with this, but one of them isn’t discrimination. Under our current system, people are penalized for being sick, poor, or unemployed. It is inefficient and expensive.

Surely we can do better. If we make GINA irrelevant, many of our health care problems will also fade.

11 thoughts on “GINA—why we should make it irrelevant”

  1. I agree that we need universal, and probably single-payer health care. I don’t know if that will happen, since the insurance industry is extremely powerful, but it would be nice.

    My only reservation is some of the problems I see with Medicare. A coworkers father was hospitalized with sepsis. While he is quite elderly, he managed to fight the infection. However, it’s taken its toll, and he may not ever make it home. He’s been in 3 different hospitals, because of arcane Medicare rules about hospital stays. Nursing home? Can’t afford it. Medicaid? Don’t qualify, and can’t qualify without leaving his wife destitute and probably in a nursing home herself.

    Things like that make me wonder about the government’s ability to handle anything. I want to think that they’d improve with a wider pool of people, most of whom aren’t elderly, but can that be guaranteed, especially since there are many in congress that would like nothing more than universal health care, if it’s ever implemented, to fail?

    The health care system in this country is a huge mess, and I don’t envy anyone who tackles the problem of trying to fix it. It will definitely be an uphill battle.

  2. I’m not saying I have any ‘smart’ answers, but in the current climate of the encroaching culture of death I’m sure this is NOT a good sign, though I’m sure it was passed with good intension’s.

    Already it’s common practice for women to be pressured to get genetic testing for unborns regardless of lack of mitigating factors such as maternal age and family history.

    It’s a scary development, and I have no doubt the big insurance companies have their best and brightest looking for legal loop holes around GINA.


  3. Totally agree. I had been in several arguments on political blogs with people who were mad that we needed GINA. I agree–I’m sorry we do–but we can’t wait for single-payer/universal/anything better health coverage. We had to do this now.

  4. My first thought on reading the headline was that you wanted to make GINA irrelevant by use of genetic engineering and thought, “whoa–optimistic!” Then I read the post and realized you were talking about something even more radical–universal health insurance in the US.

  5. So much of the increase health problems is self-imposed, like obesity, that I don’t think a blank check for health care is a good idea. If people put themselves at greater risk, they should be classified in a different pool that pays higher premiums.

    And if you want treatment for fake diseases like chronic fatigue syndrome, that should be in yet a different pool.

  6. I see PalMD’s point here – GINA is in many ways a stick-gum-in-the-leak type solution in a health care (disease care) system where science is way out in front of society’s ability to think through intended and unintended consequences. GINA is totally needed and important, but a complete overhaul of the system would be a much more comprehensive and effective way to prevent genetic discrimination, at least in the health care context. Health insurance really doesn’t fit the model of risk-bearing that the concept of insurance was designed to protect against – everyone will die, most of us will get sick as part of the dying process…it is a guaranteed outcome much different from the possibility of a car accident or a house fire. Universal coverage, while it may benefit those making poor lifestyle choices (which, let’s be honest, we all make from time to time), would not only even the playing field but would also save huge amounts currently spent on acute illness by utilizing prevention and disease management mechanisms. Again, there are certainly individual components to health status that may make an even playing field seem unfair, but it is an overly simplistic view of disease etiology to say that obesity is entirely “self-imposed.”

  7. I was shocked by “a small business, such as mine, will see rates skyrocket if someone gets sick.” That means you aren’t even getting true insurance against risk – someone getting sick is what you are insuring against. With true insurance, the insurer at the time someone gets sick covers the costs of that sickness (and ongoing effects), and the premium should remain unchanged.

    If the pooling effect only happens within the one business’s employees, you (the USA) need rules making more fair insurance policies more urgently than “universal health care.”

    Australia’s private insurance system (we have one parallel to the universal scheme) has a re-insurance pool to pool the costs of people who become chronically ill while insured.

  8. I think single payer healthcare is a bit too much to swallow for many Americans. Universal mandated coverage is far more likely because it keeps the industry private. Turns out, Americans are skeptical of their government’s ability to run things.

    Universal mandated coverage will have many of its own problems (e.g. how will poor Americans pay for it) but it will be much better than our current system. Most importantly, the laws will change to prevent exclusion of with pre-existing conditions like those GINA addresses.

    The private healthcare industry is excited to embrace the coverage for all the reasons PalMD speaks of. The massive influx of new lives to their plans will offset those with costly conditions. Since every payer will be mandated to accept all comers it will be an even playing field. Still, you have to worry about how they’ll work things to their advantage on the backs of America’s sick.

  9. I think single payer healthcare is a bit too much to swallow for many Americans. Universal mandated coverage is far more likely because it keeps the industry private.

    The oldest universal health care system in the modern era, Germany’s which goes back to the 19th century, uses a combination of government and privately run insurance companies to ensure universal coverage. Their system seems to work well–I’ve never had to wait more than a few days for an appointment when I was there and never had to wait at all for emergency service (though my use of the German health care system was not extensive). And it certainly is robust: it survived two major wars and at least five changes in government (that I can think of). On the other hand, it is second only to the American system in expense. (Though the benefits are better than the US’s: can you imagine an insurance company in the US paying for a customer to go to a spa for 2 weeks?)

    Turns out, Americans are skeptical of their government’s ability to run things.

    It depends on the thing. I’m skeptical of the American government’s ability to run the health care system in toto. However, I have great faith in its ability to write checks that don’t bounce. And that’s all it would need to do. (Actually, if you look at results, patient care in the government run VA system is generally good to excellent–better than private hospitals in some cases–and by some measures outcomes are actually better for medicare patients versus those with private insurance. So maybe the skepticism about running the health care system is unwarranted.)

  10. It’s big chance to improve human life and medicine and there should be no administrative obstacles. That’s the most important thing. Second thing is, how the insurance frame will be influenced. I don’t believe some GINA can secure non discriminating environment. I am selling insurance for many years, so I know insurance companies will try to find any possible way how to use genetic testing. For example, they can use the system of bonuses for non affected people (like when dealing with standard medical tests), so there will be no official discrimination, but the result will be the same – higher premiums for affected people.


  11. And if you want treatment for fake diseases like chronic fatigue syndrome, that should be in yet a different pool.
    stephen | May 6, 2008 10:09 PM

    Fake? Meaning?

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