Bill To Outlaw Genetic Discrimination In US

fatduck sends us a brief note from New Scientist about the overwhelming passage in the US House of Representatives of the Genetic Information Nondiscrimination Act. As written, the bill would prohibit insurance companies from charging higher rates, and employers from discriminating in hiring, based on the results of genetic tests. A Boston Globe editorial notes that the bill has been held up in the Senate by the action of a single senator, who has an (outdated) objection based on his anti-abortion stance. President Bush has said he will sign the bill if it reaches his desk.

At long last.

Now if they would only do something about flying car fuel efficiency standards.

Re:Surley Not?!

No, no, that's not quite how it works. The insurance companies can make money by averaging over a lot of people with coarse granularity if they choose. They could just take the average rates of whatever disasters over the whole population and charge one rate for everybody.

But they find that if they have finer granularity in their bins, they can offer differing rates to various risk groups. This works as long as the bins aren't too specific. In the limiting case, the insurance knows exactly what will happen to each an every person individually, at this point insurance ceases to be a useful tool for everyone, because everyone would be paying exactly for their own care and also something for the insurance company to run itself.

Now, the problem with finer-grained risk-bins is that given the choice between a company that averages over a diverse population with affordable rates for everyone and one which has a high degree of specificity enabling low-risk people to have much lower rates than high-risk people, the low-risk people will migrate towards the high-specificity insurance, leaving the "general" insurance to cover the high-risk people at, if it is to be profitable, much the same rate as the "high-risk" group at the high-specificity company.

e.g. the existence of high-specificity insurance companies naturally forces all other companies into a high-specificity niche.

So what is to be done?

I think that for things that you can control, like where you choose to build your house, the insurance companies should be able to use whatever granularity they care to. If people living in flood-prone areas, like giant beach-houses in florida for instance, are exposed to the true cost of living there, they might choose to live further out of the flood plane or use a more robust house design.

On the other hand, for something you cannot change, you could easily end up in a situation where you could not prepare for your "true-risk" and could not afford the insurance to cover it. Anti-discrimination laws for insurance companies is really a government enforced collusion for them to keep the maximum number of people insured.

On the other other hand, if the information exists, it can be acted upon. The genie can't really be put back in the bottle, and all indicators are that the information will/already does exist.

So what is the problem?

I fail to see why this is even an issue?

If Insurance Company X wants to discriminate that's fine and dandy. Big deal. Eventually some other insurance company will probably pick up the pace and find some way to offer these people insurance without outrageous prices, but what really is wrong here? It's like saying an insurance company can't charge people different rates based on sex.

It's just silly and another anti-discrimination agenda that makes people across both party lines and ideologies "feel good" about themselves when really, they're just making the economy less efficient.

Re:So what is the problem?

So that poor 5% of the population who have been born with some nasty genetic baggage can not only look forward to a worse life then the rest but also have to pay through the nose too? Not my kinda society thank you.

Re:

There is little reason to require private companies to offer universal coverage as they have enormous incentives to cheat(because if they can avoid expensive patients better, they make more money). If you want universal coverage for hard luck diseases, it

Re:So what is the problem?

As someone who is relatively healthy, I'd really rather not call paying for people with genetic conditions 'insurance', as it isn't.

The important bit, to me anyways, isn't discrimination against somebody who *has a inherited illnesss... it's discrimination based on a genetic predisposition.

The difference

I smoke, therefore I pay higher rates for life insurance, why shouldn't someone who had a genetic predisposition for lung cancer be penalized just as much as me?

You made a choice. They didn't.

Re:So what is the problem?

As someone who is relatively healthy, I'd really rather not call paying for people with genetic conditions 'insurance', as it isn't.

You are a fool. You have no idea how your gene expression will change as you get older, and until you've been genotyped you have no idea what chronic diseases are in store for you.

I'm fine with society at large stepping in and covering/mitigating their medical problems(because we are wealthy beyond imagination), but the idea that they can buy insurance against a condition after it is known is simply wrong. It's cost sharing with no risk component at all.

In other words, we should use our insurance system to incentivize people to have fewer genetic defects!

We can start by allowing insurance companies to surcharge black people for sickle-cell anemia. It isn't fair that white people should have to pay for a disease they don't even get. It's cost sharing with no risk component at all.

Re:So what is the problem?

Eventually some other insurance company will probably pick up the pace and find some way to offer these people insurance without outrageous prices

That's a BIG "probably". Talk to someone who is unable to get any kind of private medical insurance at all from any company at any price, due to some red flag in their medical history.

In the U.S.A. being un-insurable is pretty much a sentence to eventual bankruptcy should an illness strike.

Re:So what is the problem?

This is exactly the case for nationalized health care. Insurance companies are about mitigating risk. Once you've tested positive (at least for some conditions), you're no longer a risk. A rational insurance company would then set your rates at the cost of treatment.

However, as a society, we expect to have a certain incidence of these genetic disorders. It's unfair to expect the individual to pay for it -- they did nothing wrong, they shouldn't be punished. We as a society either need to decide that we don't care to help these people, tough luck for them, or we need to decide that we look out for our own and pay for the health care for these sorts of disorders.

Alternatively, we could come up with some plan that said that whoever your insurance company is when you have the test, they're on the hook for all future related bills -- but that's really just the same thing as society paying for it, we've just migrated the cost from a tax into insurance premiums, and it seems to me that hiding it that way is a bad thing.

Re:So what is the problem?

I fail to see why this is even an issue?

Even if the insurance part of the bill is of no interest to you, there is an employment discrimination component as well.

Re:So what is the problem?

Eventually some other insurance company will probably pick up the pace and find some way to offer these people insurance without outrageous prices,

You need to be hit with the clue stick about how the insurance industry works.

Try finding health insurance without answering questions on preexisting conditions. Good luck, you'll need it.

If you have certain conditions, the insurance companies (all of them) don't want you. You're undesirable.

Will "illegal" mean it won't happen?

It's illegal to fire someone for trying to start a union at his place of work, but I got fired, anyway. They claimed I had quit.

Suddenly the burden of proof falls to the injured party and all the "big bad company" has to do is have some form of plausible denyability.

Big words, high ideals, changes nothing.

Questions after reading the summary...

(1) Who is the single senator? (whose name is apparently much more difficult to type than 'single senator')
(2) What makes his objection "outdated"? (For that matter, what *is* the objection?)
(3) What is he actually doing that's "holding up" the bill?

At least the main thrust of the article is expounded, but, geez, does this guy run around in a mask and a cape and do all his legislating at night, or why exactly did the submitter feel the need to leave his person and actions cloaked in mystery?

Legislative Holds

I was not familiar with the practice of legislative holds, so I googled it and found this description [senate.gov] by the same senator that is holding up this bill, Tom Coburn. I thought others might find it interesting as well.

Oh NOW you tell me

After I already paid the guy to become a borrowed ladder and spent four weeks in leg braces to get taller. Thanks for nothing!

It doesn't sound like it goes far enough

While I agree with the spirit of the bill, they need to do something better. Genetic information should be restricted medical information only. More than the fact that employers and insurers should not be allowed to discriminate based on the information, they shouldn't be allowed to have or see that information at all. Preventing them from making decisions based on the information is an area frought with grey areas that it runs the risk of being highly ineffective because in spite of the fact that there are many criteria by which insurers are prohibited to descriminate, they manage to skirt the matter by descriminating based on "similar" and statistically related information... you know, like zip codes instead of ethnicity?

The only way to truly prevent the problem from occuring is to make it illegal for them to house the information entirely. There's no grey area there. They either have it or not. Their databases either contains provisions for it or not. If they have it, you shouldn't even have to ask why. They should be fined, reprimanded and shut down until the information is proven to be purged from their databases and database record formats.

If someone suggests "but it's about identity!" I'd have to remind them that the SSN is already being illegally abused for that purpose... it's more than enough.

some thoughts

1. We already allow insurance companies to perform complex calculations using family histories, lifestyle choices, income, living conditions etc. A whole industry is dedicated to the task of deciding as accurately as possible just who is likely to live long. I can already deduce with superb accuracy how long someone is likely to live. Conditions like heart disease, cancer, diabetes and hypertension can all be predicted rather well already. Genetics essentially is the icing on the cake, adding rare genetic conditions to the list of scannable factors. This is an incremental change, at best. Indeed, even with perfect genetic info, chance, will continue to play a major role. Hell, anyone can be hit by a car.

2. Perfect information about someone's future health might compromise the insurance system, but this is an institutional problem, not a moral one. (A weak analogy, I think, is webmaster vs. adblock. ) That two people, having vastly differing health prospects (one has undiagnosed Huntingtons, say) should pay similar premiums, is hardly an ethical judgment. It simply is how the industry operates now. Perhaps other ways exist? Life has existed before insurance, believe it or not. If indeed the function insurance fulfills is crucial under all situations, new ways of organizing it will emerge. We shouldn't seek to ossify technology just to protect status quo or a business model.

Not sure how to think about this.

Once the genome is completely mapped, and every congenital defect is detectable, the life insurance industry will change completely. Even if they're not allowed to check, or base their rates on the results, you can bet insurance companies will take a quick look at what they can expect over the life of the policyholder. If I have a heart condition or a neurological defect that's going to kill me sometime between 55-70, that can really give the actuaries something to chew on. While not 100% certain of when I'll die, they know when I'm most likely to die, and the rest is all accident insurance.

A lot of auto insurance customers are up in arms about the "insurance score" that most US auto insurers use to determine part of your premiums. For those who don't know, the insurer runs a credit report to see how responsible you are with your finances. I guess the idea is that someone who doesn't pay their bills on time is most likely to commit fraud or be absent-minded and get into more accidents. Basing part of your life insurance premiums on a known portion of your long-term health history seems fairer to me than this.

I hope we do wind up with most of the genetic puzzle solved sometime in my life. We could wipe out most inherited conditions in 2 or 3 generations. A lot of people think it's too much like engineering a society, but I think it would be a great service to the species. There should be some limits, but who wouldn't want to get rid of conditions that produce people who are a burden on society? (retards, etc.)

Re:Not sure how to think about this.

There should be some limits, but who wouldn't want to get rid of conditions that produce people who are a burden on society? (retards, etc.)

My sister is mentally retarded. Whereas I agree with your statement in part (i.e., ridding her of her condition would be a wonderous thing for her), I strongly disagree that she is a burden on society. Rather, society places a much, much larger burden on her because of her condition. She is gainfully employed and pays taxes, what more would society want from anyone? I don't think that "retards", as you so kindly refer to people like my sister, are as great a burden as those who seek to committ homicide. Maybe there might be a genetic condition associated with such behaviors. Anyway, the bigger problem is who becomes the genetic "gold standard" and who makes the descision. Should that be left up to companies that house their employees in creepy sterile office buildings [thinkquest.org]?

Nice in theory, but ...

don't you run the risk of people getting a prognosis for some horrific and debilitating disease and suddenly wanting the gold-plated health and disability plan, which the law would say has to be issued? Like going out and buying fire insurance for your burning house?

Everyone is missing the point

There are genetic tests under development (and a few already available, like Huntington's) that will allow much earlier detection of some diseases. In many cases, this will allow earlier treatment, extending lives and probably reducing overall medical expenses. However, no one is going to be willing to take the tests if they're going to become uninsurable because of it.

This isn't so much about discrimination or allowing actuaries to do a good job as it is about letting new tests become useful at all. After all, the insurance company has no more useful information if you don't take the test than if they're not allowed to use the results.

insurance is not a charity

Too many people look at insurnace as a charity, and that everyone should be entitled somehow to cheap insurance. That's not what it is. There are two reasons to take out insurance. (1) if you believe the odds of cashing in on policy x the value of the policy exceeds the cost of the loss x the chance of the loss, or (2) if the harm caused by the event uninsured is unacceptable regardless of the low odds of it occurring. We take out auto insurance for the second reason, not because we believe we are going to run into someone, but because they could sue us for $2M and that would financially ruin us. The insurance companies carefully calculate the odds for the first situation, and you can bet every penny that they have determined that statistically they will come out ahead. This is how they determine the cost of policies, and this is why they need as much information on the details of the insured before they can come up with a policy cost. Buying insurance for this reason is like gambling... the house always wins. The margin may be low, but they DO always win in the end.

If you go into a policy with a "prior condition" that changes the odds dramatically, and they have to adjust the cost of your policy accordingly to keep in the black on the average. This is not unexpected and not unfair. If they are fairly sure they are going to have to pay out on you, your rates are higher because on the average, your payout will be higher than their average customer. The rest of their customers do not want to have to pay for your increased risk

Of course with unknown preexisting conditions like say, a congenitcal heart defect, they won't win that bet, but they can't know. So they raise *everyone's* rates a hair to make up for the unknown.

What these ppl here want to do is to take what should be a higher policy rate for them, and dump it onto all the rest of us, a little bit for everyone. That's NOT how it's supposed to work, and I really don't feel like helping you to pay for your insurance policy.

IMHO, insurance companies should be allowed to conduct any test they want on you. Companies with more tests or more invasitve tests will get less customers so free market will keep the abuses in check. If you don't want to submit to tests, you will probably have to get a different, more expensive policy, and that is to be expected. Though if you pass their tests you get a lower rate than you would have otherwise. Fail the tests and owell, high rates. Quit crying, it's not their fault, that's how life works. Go blame god or something, don't hike MY rates.

Re:Any downsides?

Shouldn't an airline be allowed to deny a pilot a job based on a profile that determines he's likely to suffer seizures?

That is what's called a bona fide occupational requirement and yes, they can.

Should an insurance company have to carry and not charge extra for somebody whose genes are programmed to misfire when the applicant turns 35?

Well, the idea behind insurance is to spread risk over a large pool so when you need to pay out you have the cash; that's why gruop policies are generally cheaper than individuals. Insurance companies already do a lot of risk assessment to determine what to charge; this bill prevents them from selectively excluding people due to a possibility of an adverse outcome.

Now, they should be able to use testing results for a statistically valid sample to determine overall group risks and price accordingly; but that's what they do today.

BASIC MEDICAL NEEDS ARE COMMUNISM!!!!11

"This sounds like socialized medicine via the back door."

I guess by your inflection we are to assume you are not in favour of socialized medicine? This is why americans don't deserve socialized medicine. They are arrogant, selfish and deserve to die pennyless in the street from common bacterial infections. May the last sound your wheezing body hears, be some guy on a cel phone pausing from his conversation to tell you to 'get a job' before spitting in your tear soaked face.