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Bill To Outlaw Genetic Discrimination In US
Posted by
kdawson
on Sun May 06, 2007 02:54 PM
from the hands-off-my-genes dept.
from the hands-off-my-genes dept.
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Globe editorial notes that the bill has been held up in the Senate by the action of a single senator, who has an (outdated) objection based on his anti-abortion stance.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.
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Your Rights Online: Bill Prohibiting Genetic Discrimination Moves Forward 575 comments
An anonymous reader writes "The bill to ban genetic discrimination in employment or insurance coverage is moving forward. Is this the death knell of private insurance? I think private health insurance is pretty much incompatible with genetic testing (GT) for disease predisposition, if said testing turns out to be of any use whatsoever. The great strength of GT is that it will (as technology improves) take a lot of the uncertainty out of disease prediction. But that uncertainty is what insurance is based on. If discrimination is allowed, the person with the bad genes is out of luck because no one would insure them. However, if that isn't allowed, the companies are in trouble. If I know I'm likely to get a certain condition, I'll stock up on 'insurance' for it. The only solution I can see is single-payer universal coverage along the lines of the Canadian model, where everyone pays, and no one (insurer or patient) can game the system based on advance knowledge of the outcomes. Any other ideas? This bill has been in the works for a while."
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Science: President Bush Signs Genetic Nondiscrimination Act 527 comments
artemis67 writes "This past week, President Bush signed the Genetic Information Nondiscrimination Act (GINA), which would prevent health insurers and employers from discriminating against individuals on the basis of their genetic information. GINA is the first and only federal legislation that will provide protections against discrimination based on an individual's genetic information in health insurance coverage and employment settings.'"
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At long last. (Score:4, Funny)
Surley Not?! (Score:3, Interesting)
But Insurance?? Really??
I pay more on my car insurance because I am a Male who is under 25. (well I did until I turned 25)... so that would be in violation of both age and sex descrimination laws wouldn't it??
Insurance works on statistics... as a <25 year old Male, I am statically more likely to act like an idiot and crash my car.. so, chances are I pay more insurance than yo
Re:Surley Not?! (Score:5, Insightful)
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.
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Damnit (Score:2, Funny)
So what is the problem? (Score:4, Insightful)
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? (Score:5, Insightful)
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As someone who is relatively healthy, I'd really rather not call paying for people with genetic conditions 'insurance', as it isn't. I'm fine with society at
Re:So what is the problem? (Score:4, Insightful)
The important bit, to me anyways, isn't discrimination against somebody who *has a inherited illnesss... it's discrimination based on a genetic predisposition.
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The difference (Score:5, Insightful)
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However, imagine other cases:
Imagine being fired because you carry a gene that is linked to an increased likelihood of problematic behavior (certain genes associated with certain forms of alcoholism, for example, or maybe genes associated with aggressive tendencies). We already ban discrimination based on other genetic fa
Re:So what is the problem? (Score:5, Interesting)
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.
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That's pretty much irrelevant. Since the medical costs for any individual are highly predictable, most health coverage is not "insurance" at all. Individual plans for a few healthy human specimens are insurance, but most people aren't healthy enough (or have a family member who is not healthy enough) to get individual health i
Re:So what is the problem? (Score:5, Insightful)
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.
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Re:So what is the problem? (Score:5, Interesting)
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.
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Re:So what is the problem? (Score:5, Insightful)
Even if the insurance part of the bill is of no interest to you, there is an employment discrimination component as well.
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Re:So what is the problem? (Score:5, Insightful)
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.
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So? "Economic efficiency" isn't the highest good in the world. And they're not "just" making the economy less efficient, they're potentially giving people access to lifesaving treatment that they might otherwise not be able to afford. If we save a few lives at the expense of a little efficiency, I'm all
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The problem is: Insurance companies should be able to discriminate based on anything you're comfortable with them knowing.
Why? The whole point of insurance is to spread risk over a large population. With perfect information, all the healthy people would go to the cheap carrier and everybody else would pay through the nose because they lost the genetic lottery. That's no way to run a society.
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Until people stop whining like idiots every time someone brings up universal health care, we'll never have an honest discussion about its merits. You don't think people with no insurance just die in a gutter, do you? No, they wait until their problems are life threatening, and then go to a hospital. It's expensive, and they never pay, so we really already have UHC for anyone willing to go that route. Do ya think maybe it might be cheaper just to treat these people proacti
Will "illegal" mean it won't happen? (Score:5, Insightful)
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.
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Couldn't you have made it obvious by screaming and clutching at the drapes as the security guards dragged you out?
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This is why Labor Day is my favorite holiday. We celebrate easter and Christmas for a guy that is arguable if he even existed let alone died for you. Yet on labor day it is documented on the record that many workers died for the rights we have to
Questions after reading the summary... (Score:5, Insightful)
(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 (Score:5, Informative)
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Oh NOW you tell me (Score:5, Funny)
I was really worried about this ... (Score:2, Insightful)
It doesn't sound like it goes far enough (Score:5, Insightful)
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 (Score:4, Insightful)
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. (Score:5, Interesting)
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. (Score:5, Interesting)
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]?
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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.
Many genetic factors simply alter the odds, very few will defiantly cause something at age X (oddly enough even those at risk for these do not always want to be tested even when tests exist). Your enviroment (current and past, including when you were still a fetus) matters a great deal. It may be that you have a genetic risk for ulcers but require exposure to an environmental factor (say a virus) for it to happen.
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.)
By the standards of someone who has say a 350 IQ we're all retards, there is no line to draw
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It will be the death knell of mankind. Seriously.
Humanity is still subject to that powerful force called evolution. There are those who say that genetic selection will help us control our own evolution. No it won't. Evolution is based on natural selection of random mutations. If you start pruning off things you don't like; s
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Nice in theory, but ... (Score:5, Insightful)
Insurance companies have had their day (Score:3, Interesting)
1) Convince people they need insurance to cover the cost X of Service S.
2) Insured people can now afford to pay more so provider charges X+Y for service S.
3) Rising cost of (X+Y) means people can no longer afford service S so they must buy more insurance.
4) ??? Profit
5) goto step 1
Insurance companies don't need the ??? step and
This is ridiculous (Score:3, Interesting)
If we aren't allowed to "discriminate" on the basis of criteria we see fit, we are being denied the use of our most precious human asset: our neurons.
However, since the government insists on interfering in family matters by prohibiting euthanasia within the family setting -- the government thereby must pay the full costs of humane care for people thereby kept alive.
PS: I do not by the way consider it unethical to encourage my relatives to avail themselves of every benefit available to them under the law. I consider it unethical merely to fail to speak out against such laws given the benefits accruing to me indirectly via them. The same standards of behavior should hold for anyone who benefits from any form of "anti-discrimination" law.
Actually... (Score:3, Interesting)
Actually, although it is by no means an ethical duty of my family members to avoid passing on "defective" genes, the lines containing these genes are in-laws to my nuclear family and, yes, the Huntington gene is not being passed on -- although given the fact that the gene has been identified and may be amenable to editing even in the germ line in the near future renders it far less urgent that it not be passed on. The genetic susce
non-humans? (Score:3, Funny)
Everyone is missing the point (Score:4, Insightful)
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.
Here we go... (Score:3, Interesting)
insurance is not a charity (Score:5, Interesting)
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.
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Basically someone who knows they are going to die or be disabled soon would pay for the insurance. Once the customer is making decisions based on that information, the insurance company will be forced to raise prices to cover
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Privacy always has, and always will, have a price tag attached to it. Nothing new here. Once you are in public you have no right to privacy. Doing business with someone is being out in public.
Despite this, your proposed m
Re:Any downsides? (Score:5, Insightful)
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.
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BASIC MEDICAL NEEDS ARE COMMUNISM!!!!11 (Score:5, Funny)
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