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President Bush Signs Genetic Nondiscrimination Act
Posted by
ScuttleMonkey
on Mon May 26, 2008 12:11 PM
from the no-paring-based-on-pairing dept.
from the no-paring-based-on-pairing dept.
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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Politics: Bill To Outlaw Genetic Discrimination In US 353 comments
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Globe editorial notes that the bill has been held up in the Senate by the action of a single senator, who has an (outdated) objection based on his anti-abortion stance.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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First time Bush has posted something sane. (Score:5, Funny)
Maybe there's hope for us mutants then.
X
Re:First time Bush has posted something sane. (Score:5, Funny)
Parent
Re:First time Bush has posted something sane. (Score:5, Interesting)
Parent
Re:First time Bush has posted something sane. (Score:5, Interesting)
This week, in Federal Court, the Bush Administration has asserted that the AUMF (the bill congress passed to give him permission to invade Iraq) also gives him the right to have the military (that's military, not police) have the right to arrest a US citizen on US soil and hold him indefinitely as an enemy combatant.
Now the Bush administration has asserted this right before, but because of inherent executive powers, which while being insane is at least consistent. But now, he's asserting these military-police dictatorial powers come from a bill passed by congress authorizing a foreign invasion.
This is astonishing, but frankly, I'm too disturbed by this new development to be astonished.
So before you start giving Bush a thumbs-up for some genetic anti-discrimination law, and start feeling comfortable that you will hang on to some shred of personal liberty, you might want to keep in mind that he's now asserting complete dictatorial powers and he could give a good god damn about the Constitution or any bill he has signed, because when it comes right down to it, he's now calling the shots and it's going to take more than some silly little election, or court, or congress to change things.
Parent
Re:First time Bush has posted something sane. (Score:4, Insightful)
Parent
Re:First time Bush has posted something sane. (Score:5, Insightful)
You can't compare this to genetic discrimination. People have no say in what genes they're born with, but they most certainly have a say in whether they choose to engage in behaviors that drive up healthcare costs.
Maybe the answer would be to charge higher insurance premiums for such behaviors, maybe it's something else. But it's definitely not on par with genetic discrimination.
Parent
Re:First time Bush has posted something sane. (Score:4, Insightful)
I think this post, more than any other, called for: [citation needed].
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Repeat after me, physician, (Score:5, Insightful)
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Not everything you read is true (Score:5, Interesting)
Aside from that (and this is a stretch, but people with shiny hatwear will appreciate it), the FDA will not allow the sale of patches, pills or other methods to curb smoking habits as medical devices unless they can be used to cure a disease. It's the same thing that Kevin Trudeau guy got in trouble for. Only medicines can cure diseases, and only the FDA can approve medicines. So, unless it's a disease, these things cannot be marketed as cures, and the only way they can be marketed as cures is if the FDA approves them as medicines. How much money do you think is wrapped up in stop-smoking products?
An addiction to masturbation is quite the same way. As I'm sure many people here can attest to, without "getting the poison out," a person can be caused pain, become irritable, lose sleep, perform poorly at work or sports, can acquire jitters or shakes, and various other things that would be the same for a person who hasn't puffed on their death stick. Does that mean that I should get a fifteen minute spank break every two hours at work?
Cigarettes, alcohol, drugs, gambling, sex, MMOs, and many many other things that are considered addictions are not. They are merely a weakness of character. If they are actually addictions, then I should get my UFC tickets to be covered by my insurance, because I'm certainly ADDICTED to that.
Parent
Re:Repeat after me, physician, (Score:4, Insightful)
Parent
Re:Repeat after me, physician, (Score:5, Insightful)
Whether or not nicotine addiction is a disease is completely irrelevant. The issue is control and choice. Tobacco users had control and made a choice which led to them becoming nicotine addicts.
Saying "I shouldn't be discriminated against, because addiction is a disease!" is bullshit. It may be a disease, but you gave it to yourself because of your poor life decisions. It's like deliberately injecting yourself with the Ebola virus, getting Ebola, and then saying "it's not my fault I have Ebola symptoms! I have a disease! Don't discriminate against me!" It's like deliberately mixing radioactive waste into your food, getting radiation poisoning, and saying "It's not my fault! I have a disease!" And back in the 1950s you could (legitimately) plead innocence, but anyone who took up smoking after 1980 knew exactly what they were getting themselves into.
Comparing tobacco users to people with inherited disorders is bullshit. Tobacco users have a disease, if that's what you want to call it, because they made a stupid decision. A person with hemophilia inherited defective genes. One has a disorder because of something under their control, their decision to smoke. The other has a disorder because of something completely out of their control, the mixture of genes they inherited from their parents.
Parent
Re:Repeat after me, physician, (Score:4, Insightful)
Your argument seems to be that since they made a stupid decision, they should not be helped and left to fend for themselves. What about AIDS victims? Are you going to argue that since they had risky sex they should not be helped? Or what about people sick with malaria, they should have known better and settled where the mosquitoes don't fly? And what about the child that falls into a pit, should he have known better too? Where are you going to draw the line?
An addiction to nicotine is no different than one to alcohol or heroine or cocaine or any other addicting toxic drug: addicted people must be helped out of it, because that's the decent thing to do and because you also save society a few pennies by doing so. Making mistakes is a fairly common part of human life, and in the case of addictions such as smoking the main problem is in fact that people do not have complete control of their behaviour.
Parent
Re:Repeat after me, physician, (Score:4, Insightful)
This whole thing comes down to some unanswerable determinism/free-will kinds of arguments. IMO, sick people should be taken care of and healthy people should do whatever the hell they want with their bodies. End of story. The whole argument about any substance 'abuse' comes down to some kind of sick puritanical moralizing and it makes me sad that in this day and age my actions are ruled by the same people who won't let actors say 'poop' on tv.
-bah
Parent
Re:Repeat after me, physician, (Score:4, Insightful)
I think the truth is that you will never accept as an authority any person or body that professes a view opposite to one you hold, regardless of experience or education.
Parent
Re:First time Bush has posted something sane. (Score:5, Insightful)
Parent
Re:First time Bush has posted something sane. (Score:5, Insightful)
Public health issue? So they don't smoke in the office, nor anywhere except designated smoking areas, where us non-smokers will never go anyway. "They smell bad" is about as valid as complaining about your coworker's BO, both are issues that you have to sort out within your own office environment.
The problem with alcoholics is that being drunk precludes you from doing useful work, as well as being a disruptive force in the office. You cannot possibly make that case with smoking. A smoker is NOT impaired, nor is he disruptive unless he's puffing smoke in your face.
I cannot believe you're seriously suggesting discrimination against smokers "because they smell bad". What's next, not hiring the Indian dude because he smells like curry? Get real.
Ugh, age limits have NEVER solved ANY problems. Around here they keep raising the driving age, and accidents have never decreased. All they've done is have a bunch of 20 year-olds killing themselves in cars, instead of 16 year-olds. The smoking problem, drinking problem, and any other social ill is NOT solved by limiting access to the vice, it is solved from the root of it - cultural perceptions. Funny how France has no realistic drinking age, but alcohol abuse is a FAR smaller problem for them. It's all in the culture, m'boy.
Parent
Re:First time Bush has posted something sane. (Score:4, Interesting)
Christ, a job I once had was a real great one. Hi sarcasm. The first floor was where they stuck all the fat cows -- I don't know how or why it worked out like that, but you'd be lucky to fit 4 in an elevator. And these were big elevators. 12 normal people would fit in them.
These bitches would take the elevator DOWN. ONE FLIGHT OF STAIRS. AND STILL BE OUT OF BREATH.
Meanwhile, my smoker's ass is running up and down 6 flights of stairs because the elevator is too slow.
But let's demonize tobacco, not lazy ass fatties who exhaust themselves pushing their chair away from their desk.
Tobacco is simply easy to demonize. Nobody wants to stand up and defend it -- not even most smokers. Alcohol at least gets people up in arms..
Parent
Genetics is not a "lifestyle choice" (Score:4, Insightful)
In fact, it is (rightly) common practice amongst medical and home insurance providers already to charge extra premiums to policy holders who smoke, and to deny coverage/claims to those who falsely declare themselves non-smokers in cases where smoking is at the root cause of the claim. That is the way it should be, and there should be no law preventing individuals or institutions from continuing the practice.
It is not inconsistent to support something like GINA and also support the freedom to discriminate in favour of non-smokers because the latter is a lifestyle choice, and the former, GINA, in my opinion is at its heart an update of laws against racial discrimination.
People aren't born with cigarettes in their mouths, and not only are we not forced to smoke, we have been told for decades that smoking is an unhealthy lifestyle choice that's best not even started. I cannot comprehend why anyone in this day and age would want to start up a smoking habit knowing what a totally stupid idea it is. Smokers deserve to pay more for (or be denied) insurance and pay a large "stupid tax" on tobacco. I think it is their right to be stupid and do stupid things, but I also believe that those who exercise their right to do stupid, destructive things should bear the full responsibility to cover the costs incurred.
Conversely, in this day and age, we know a lot about genetics to predict, to some degree of accuracy, if we are pre-disposed to health issues, yet we are quite far from being able to reliably create genetically perfect beings yet. In short, it is impossible for us to make any significant choices in our genetic makeup. In that respect discrimination based on genetic markers is on par with discrimination based on gender or race, so GINA is right in line with the spirit of the US constitution.
Parent
Re:Genetics is not a "lifestyle choice" (Score:5, Insightful)
STARTING smoking is a lifestyle choice - one which is often made at an age where you're too young and headstrong to know better. Continuing to smoke is not always a lifestyle choice.
As someone who is a smoker and has tried many times to quit, I do NOT feel that I have control over it without medical aids. That effectively puts it in the "disease" category (as another poster has pointed out). I do not CHOOSE to continue smoking, I simply continue to do it because I can't not do it. I know that some people quit smoking very easily, and then go on at the rest of us about how you just "need to be strong" and so on. That's a load of crap - the addiction is different in different people, and many of us could much more easily give up FOOD and WATER than we could cigarettes. The most extreme hunger and the most dire thirst are NOTHING compared to the craving I have for a cigarette if I don't have one every few hours.
I will very soon be seeing a doctor to get something prescribed, since the "over the counter" stuff helps somewhat, but not enough. I am fearful for my life, and yet still I light up. Tobacco addiction is a disease, and I would never wish it on anyone.
(I do apologise for this rather "personal" rant here, but I can't let this little thread pass as is - I fully expect flames and derision for my comments here from those who couldn't possibly know what it's like. I will happily read and perhaps reply to any sensible replies, but will ignore the flames, so don't bother trying to get a rise out of me)
Parent
Re:You Liberals can thank yourselves for $4/gal. g (Score:5, Informative)
How much is $4/gal a price increase, and how much is it a devaluation of the dollar?
I think it's pretty clear that it's largely a devaluation of the dollar.
Parent
Re:You Liberals can thank yourselves for $4/gal. g (Score:4, Insightful)
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Re:You Liberals can thank yourselves for $4/gal. g (Score:4, Insightful)
In other words, we literally need to plan our communities to look more European. Any help convincing Americans to do that is much appreciated.
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Re:You Liberals can thank yourselves for $4/gal. g (Score:4, Insightful)
Parent
Does it ban access? (Score:5, Insightful)
( and no i didn't read it, it would be to large to wade thru on a holiday weekend )
Re:Does it ban access? (Score:4, Informative)
However, like most DRM schemes, I'm sure a "hack" will be found soon.
What's lame is they don't even need to discontinue insurance based upon genetics. My step-fathers sister in law had her insurance dropped by her company (amongst others). Management told them straight up it was because they weren't "healthy enough." Of course on paper it was for different reasons (cost reductions I believe.).
This is simply more feel good legislation.
Parent
Waste of legislation. (Score:5, Funny)
Re:Waste of legislation. (Score:4, Interesting)
Seeing that made me think of the movie title "Gattaca", at which point I realized that "Gattaca" was actually deliberately named using only a,t,c,g on purpose... digging in wikipedia confirms that it was named for an enzyme, EcoRI, that cuts "GAATTC"
I'd never really thought about the significance of the title before. Makes an already great movie, just a little bit better. Thanks for that epiphany...
Parent
Interesting vote... (Score:5, Interesting)
Who was the one who voted against this?
Re:Interesting vote... (Score:5, Informative)
Our good friend Ron Paul, it turns out.
Parent
Re:Interesting vote... (Score:5, Funny)
That's because he thought it was the Genetic Nondiscrimination in America Act, and you know what he got when he searched the web for GNAA ...
Parent
Re:Interesting vote... (Score:5, Funny)
Parent
Re:Interesting vote... (Score:4, Interesting)
http://www.govtrack.us/congress/vote.xpd?vote=h2007-261
The three who voted agaisnt this are: Jeff Flake [R] Edward Royce [R] and Ronald Paul [R]
Parent
And for good reasons... (Score:5, Insightful)
But the reason none of them should have supported this is that the result can and will drive up the cost of health care for everyone.
If someone knows they are genetically disposed to malady "x", there is now a law which guarantees that they can get insurance coverage at the same price as someone who is at less risk. What does Congress expect them to do, not take advantage of that fact? If insurance companies can't set pricing based on full knowledge and actuarial statistics, but people can, it will increase costs.
Finally, why shouldn't people at greater risk pay more? Discrimination is not necessarily a bad thing. People discriminate all the time - employers discriminate by choosing more skilled workers over less skilled ones, consumers tend to discriminate against higher priced retailers, the President discriminates against the proles by shutting down traffic as his motocade makes it's way though a city. (Well, maybe that last one is bad discrimination).
In fact, this law discriminates against those who are at less risk for genetically identifiable diseases, by forcing them to pay higher insurance rates than they otherwise would.
Parent
Re:And for good reasons... (Score:5, Insightful)
Parent
No.. (Score:4, Insightful)
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Re:And for good reasons... (Score:5, Insightful)
No. If you choose to drive a vehicle with more risk of being stolen, the insurance company charges you more to be insured. You've assumed a voluntary risk and the insurance company dings you.
When you sign up for life insurance, if you're a 63 year old smoker you won't get as favourable rates as if you were a healthy 18 year old.
The part that makes people uncomfortable about genetic discrimination is the eugenic angle. Nobody is able to control the genes that they are born with, and discriminating against groups of people based on factors beyond their control is usually a pretty crappy thing to do.
Parent
No, that is NOT INSURANCE, that's socialism, (Score:5, Interesting)
The point of insurance is that you pay to get rid of your own risk. (Well, not to get rid of it entirely, but to get rid of the major consequence of something bad happening: having to pay a lot of money). If your risk is higher, you need to pay more. If your risk is lower, you get to pay less.
Consider extending your analogy. People with a lot of car accidents pay more for insurance. People with a clean record pay less. What would you think of a proposal that would make everyone pay the same amount for auto insurance? I'd think it would be pretty ridiculous, and I think you should too. And while one might moralize that people can't help their health so much as their driving habits, that's not the issue of an insurance company, Health or otherwise.
The problem is people who want some level of socialism and try to get it through insurance regulation and end up losing the free-market benefits while not even gaining much as a result. If you want other people to pay for your health care (and that of everyone else) stop beating around the bush and wagging your fingers at the insurance companies and admit you want socialized medicine. Then we can at least address it on its own terms.
Parent
Re:And for good reasons... (Score:4, Insightful)
Parent
Re:And for good reasons... (Score:4, Insightful)
How does it change the status quo? Insurers have been working on the basis of averages without genetic information for a very long time. There are factors driving up the cost of healthcare, but a lack of access to genetic information doesn't seem to be a major one.
Parent
Re:And for good reasons... (Score:4, Interesting)
I wonder how that will fare under the law.
Parent
Re:And for good reasons... (Score:5, Insightful)
That's the most fucked up reasoning written on slashdot in a long time. How is someone able to take advantage of being more likely to carry a genetic disease? Why should someone born with a genetic disorder have pay premium for something that is absolutely out of their control?
Being able to aquire medical care when in need is a basic human right. If you don't like that fact, then there are plenty of third world countries you can ove to where the evil state won't "steal" your money to provide health care for the sick.
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Re:And for good reasons... (Score:5, Insightful)
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The Devil's In The Details (Score:5, Insightful)
I tend to look on such legislation as likely to have the reverse effect to the one stated, because it is frequently written to provide cover, loopholes and exceptions for the powerful, well-connected industries it is supposed to govern.
And even with the best of intentions, it often has the effect of limiting an individual's rights to whatever is covered at the time, regardless of scientific and technological advances that can render such rights and protections woefully obsolete.
About Time (Score:5, Insightful)
As for loopholes, we the public must start an intolerable outcry the moment we hear of any such pending. This needs to be an across-the-board absolute, not a political game.
Jame Watson has 32 "dangerous" genes (Score:5, Interesting)
P.S. No, they did not discover the gene for making stupid racist remarks, which forced Dr. Watson into retirement last year.
Research *does* need regulation (Score:5, Interesting)
It's an unusual sentiment for me, but I must applaud President Bush for being foresighted enough to pass this legislation.
I recently attended a futorological lecture at Oxford University on the possibility of genetically engineered 'persons' (not necessary human persons). The lecture was given by Nobel prize-winner John Sulston (an important figure in the human-genome project), John Harris (a bioethics expert), and was hosted by Richard Dawkins. The panel was very much in favour of continued research into genetic modification of humans, but placed a strong emphasis on the need for legislation to prevent powerful cliques from monopolising or abusing the technology.
One important point they made is that (just about) any technology can be used to give an overwhelming opportunity to those who are free to enjoy it, but that the norms of modern Western societies ensure that most people have the potential to take advantage of the majority of science's blessings. However, we can't simply trust large corporations or other powerful institutions to equitably distribute the advantages of these technologies. Regulation is needed, and Bush is providing a good first step.
So, in summary, we must continue to research and to pursue all avenues of research, but the applications of the research need to be very carefully thought through.
Re:Research *does* need regulation (Score:5, Interesting)
Personally I would hold the applause until you actually read the act. 99 times out of a 100 the bill name means nothing about the content.
Having a quick look at thomas.loc.gov it looks like the bill is [H.R.493]. Reading some bits...
While you can't discriminate based on genetic material the section 210 states that if the information is found by any other means it is permissible (even if it is a genetic related issue). So this for the most part will have no effect on Medical Insurance companies.
For example if one of my parents suffered from a genetic disease then they could discriminate against me based on that information and not on actually checking if I have the genetic markers or not.
Section 103 seems to mention that if a health company came by your genetic information via another source (3rd party) then it is permissible to use it.
Also there is mention of Genetic testing IS NOT..
"an analysis of proteins or metabolites that is directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved."
So, IANAL or biologist but even casual reading there appears to be loads of outs for private medical companies.
Parent
This is fine and all... (Score:4, Insightful)
Adverse selection (Score:5, Insightful)
The problem with this law is that it creates adverse selection in health insurance. Health insurers won't be able to get genetic info on the people they're covering, but the people themselves will. That creates asymmetric information, and is ripe for abuse. Think about it: if I get my DNA sequenced and find out that I'm a walking health hazard, then I'll buy the most comprehensive policy out there. If I find out I'm genetically clear, I scale down my coverage, or drop it completely. Meanwhile, the insurer can't adjust my premium to accurately reflect my risk. The result: only genetically unhealthy (and risk-averse) people will buy into health insurance pools, or the genetically health will only buy insurance for physical accidents. And when the insurance pools are small, and the insurers can't accurately price risk, they pools collapse: nobody gets health insurance.
Of course, the obvious alternative--let both buyers and sellers of health insurance use DNA analysis to accurately price risk--is unpalatable because people will suffer from higher premiums through no fault of their own (i.e. because they have bad genes), and people will benefit through no effort of their own (i.e. because they have good genes). This concern (coupled with privacy concerns) is why GINA passed overwhelmingly, and I don't mean to diminish it.
Insurance works best when the risks aren't ascertainable in an individual case but are ascertainable in the aggregate. DNA sequencing really threatens the concept of health insurance, because it greatly decreases the uncertainty surrounding an individual's health future. The best way to keep insurance alive is to insure before it is possible to determine a person's health risk. Now, you could do that by banning DNA testing for individuals unless they are willing to permanently waive their ability to buy or modify their health insurance policies, but DNA testing is so cheap that the ban will be hard to enforce, and a permanent waiver seems rather harsh. You could require people to buy insurance for their kids before conception, but that has the same problem that the kid will be stuck with the same health insurance for ever (and that there might not be a kid in sad circumstances)
The ultimate, fool-proof solution: social gene insurance. Essentially, when any private insurer wants to charge you more than the base rate because of your genes, you just pay the base rate and society picks up the difference. The gene insurance would be funded through taxes, much like social security is now, though none of that "lockbox" BS. Socialized health insurance would work, too, being a superset of social gene insurance. The idea behind social insurance schemes is that they in effect force citizens to buy in before anyone has any knowledge of their genetic risk, making it a sound insurance product. And the solution works from the view of liberal theories of justice, e.g. Rawls, because it is essentially a redistribution of social resources from those who happen to be born with (and hence do not deserve) such resources to those who happen to be dealt a bad hand, through no fault of their own.
Why not just make this obsolete? (Score:5, Insightful)
Then we can say just mandate that everyone has to carry individual coverage so we solve the uninsured problem. Plus we would insure that the young and healthy were in the pool - thus keeping the overall rates down.
Of course it would be a lot easier to deduct it from people's paychecks rather than have a whole system whereby we monitor citizen's compliance with the law. So it would just be an amount deducted from your pay.
And we would need to make it something people who were poor could afford, so there would be subsidies so that the poor paid less... and the wealthy paid proportionately more. So it would be a progressive deduction from your taxes.
Plus we could save a LOT if in addition to providing preventative care instead of what we do (ER care as a last ditch effort when diseases are harder and more costly to treat) we got rid if the thousands of insurance providers and just had one large provider. I know as a physician I spend a lot of money on hiring people just to fill out insurance forms for me. If there was one form that was consistent, I would be able to provide care a lot more economically. And if everyone was in the same system, we would have better assurance that the care would be reasonable since the people with the most power would also have to have that same insurance... no way to make what the poor get be shoddy. So we would just cover everyone under one large pool.
And then.... well we'd have the most humane and cost effective system possible: a single payer national health service funded by an income tax spread fairly on the population. Or as the nutters refer to: socialized medicine.
Gasp!