House to approve anti-genetic discrimination bill

[Ron Burgundy]

AP - Congress on Thursday moved toward passing a landmark anti-genetic discrimination bill making it illegal for insurance companies or employers to raise rates or refuse jobs and insurance because of a chance that people's genes might cause a debilitating disease like cancer or diabetes.

The House is expected to overwhelmingly pass the legislation a week after it passed the Senate on a 95-0 vote. The bill would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

President Bush is expected to sign the bill.

Rep. Louise Slaughter, D-N.Y., said that for years doctors have been forced to tell women whose families have a history of breast cancer to refuse genetic testing for fear of discrimination.

"They have recommended to them that until a bill such as the one we are passing today becomes law in this country, they should not put at risk their health insurance," Slaughter said.

The use of genetics to determine insurance and benefit eligibility is not unprecedented.

In the 1970s, several insurers denied coverage to blacks who carried the gene for sickle cell anemia. The Lawrence Berkeley National Laboratory in California secretly tested workers for sickle cell trait and other genetic disorders from the 1960s through 1993; workers were told it was routine cholesterol screening.

In another incident, Burlington Northern and Santa Fe Railway Co. paid 36 employees $2.2 million in 2002 to settle a lawsuit in which the workers claimed the company sought to genetically test them without their knowledge after they had submitted work-related injury claims. The railroad denied that it violated the law or engaged in discrimination.

Without genetic testing, researchers say it will be more difficult to find early, lifesaving therapy for a wide range of diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson's disease.

"We will never unlock the great promise of the Human Genome Project if Americans are too afraid to get genetic testing," said Rep. Judy Biggert, R-Ill., who sponsored the bill along with Slaughter.

Each person probably has six or more genetic mutations that place them at risk for some disease, according to the National Human Genome Research Institute. That does not means that a disease will develop, researchers said, just that the person is more likely to get it than someone without the genetic mutation.

Congressional efforts to set federal standards to protect people from genetic discrimination go back more than a decade, to a time when there were only a small number of genetic tests.

But now, with the mapping of the human genome in 2003, people have access to far more information about their hereditary disposition to such crippling afflictions as cystic fibrosis, Huntington's disease or Lou Gehrig's disease.

"Currently the fear of misuse of genetic information is preventing people from getting these important genetic tests done," said Rep. Pete Sessions, R-Texas. "The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike. Lack of testing denies individuals important medical information that they could otherwise use to be proactively managing within their health with their doctor."

According to National Human Genome Research Institute, 41 states already have enacted legislation related to genetic discrimination in health insurance and 31 states adopted laws regarding genetic discrimination in the workplace.

There has never been a federal law, although then-President Clinton issued an executive order early in his administration to ban the federal government — the nation's largest employer — from demanding that employees undergo any sort of genetic test or from considering a person's genetic information in hiring or promotion decisions.

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The bill number is H.R. 493.

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On the Net:

For bill text: http://thomas.loc.gov

Frequently asked questions about genetic testing: http://www.genome.gov/19516567

source: http://news.yahoo.com/s/ap/20080501/ap_on_go_co/genetic_discrimination [link]

[HeroicLife]

This is a terrible law with deadly consequences. The main consequence of this law will be more uninsured people and needless deaths.

See "Genetic Discrimination Saves Lives"

[7960]

Originally Posted by HeroicLife

This is a terrible law with deadly consequences. The main consequence of this law will be more uninsured people and needless deaths.

See "Genetic Discrimination Saves Lives"

so I need a kidney and my adult son get tested...it turns out that he has the same problem as me.

next thing you know his insurance drops him.................... that's a "terrible law"?

[Kytro]

Originally Posted by HeroicLife

This is a terrible law with deadly consequences. The main consequence of this law will be more uninsured people and needless deaths.

See "Genetic Discrimination Saves Lives"

It isn't a terrible law, since genetic testing for insurance is not already widespread, it is unlikely to cause prices to rise (that is it will not introduce more risk)

[WickedLou9]

The only question I have is how do you determine what is genetic? I mean if the auto insurance company chanrges me more money becuse of my genes...which they do.. I have the gene for "Male" and thus they charge me higher rates. Being male or female is most definately a genetic trait, and the insurance companies argue that because they have data to back up the fact that people with the "male" gene are more aggressive drivers, then they can charge us more... Is that legal under this bill?
My example is at the far reaches of the intent of the bill but I think the arguement could be made well enough that issues like this might be the subject of lawsuits in the near future.

[RockPusher]

Originally Posted by WickedLou9

The only question I have is how do you determine what is genetic? I mean if the auto insurance company chanrges me more money becuse of my genes...which they do.. I have the gene for "Male" and thus they charge me higher rates.....

Zang!


I'll bet you just nailed the first test of the law... provided it becomes law.


or the insurance companies will simply eliminate the gender stipulations and raise the general rates.

[Kytro]

Originally Posted by WickedLou9

I have the gene for "Male" and thus they charge me higher rates. Being male or female is most definately a genetic trait, and the insurance companies argue that because they have data to back up the fact that people with the "male" gene are more aggressive drivers, then they can charge us more... Is that legal under this bill?

Yes it is legal under the bill:

Under GINA, health insurers would be prohibited from using genetic test results to deny coverage or raise premiums, and employers could not use the information in hiring, firing, setting compensation or promoting an employee. Insurers and employers would also be prohibited from requiring such tests and from collecting genetic information without consent.

Senate Passes Genetic Antidiscrimination Bill: Scientific American

The bill prevents the use of genetic tests to make insurance decisons. Since you don't need a genetic test detemine if you are male. It also wouldn't prevent them from setting conditions on insurance in regards to pre-existing conditions.

Since this isn't routine, it is unlikely to affect insurance rates as they stand

[WickedLou9]

Originally Posted by Kytro

Yes it is legal under the bill:



Senate Passes Genetic Antidiscrimination Bill: Scientific American

The bill prevents the use of genetic tests to make insurance decisons. Since you don't need a genetic test detemine if you are male. It also wouldn't prevent them from setting conditions on insurance in regards to pre-existing conditions.

Since this isn't routine, it is unlikely to affect insurance rates as they stand

I'm really just playing devils advocate here...
So just because a genetic trait is physically apparent, it's ok to discriminate for it? Technically speaking, all genetic traits are pre-existing conditions right? they are with us from the time the sperm and egg joined. The bill doesn't really say that it only pertains to test results, it says it's targeting the genetic factor. I don't really know the answer but I bet that you will see lawsuits of this nature in the future.

[kinggovernor]

this is my representative, a complete waste of resources. I wish she would retire from her gerrymandered district.



Look at that

[Kytro]

Originally Posted by WickedLou9

I'm really just playing devils advocate here...
So just because a genetic trait is physically apparent, it's ok to discriminate for it?

I have not read the full text, but from what is being reported yes, it is using the information from genetic tests that is not allowed.

Originally Posted by WickedLou9

Technically speaking, all genetic traits are pre-existing conditions right? they are with us from the time the sperm and egg joined. The bill doesn't really say that it only pertains to test results, it says it's targeting the genetic factor. I don't really know the answer but I bet that you will see lawsuits of this nature in the future.

Quite possible, but a predisposition isn't a medical condition. So they could refuse to insure if you had some disease, but not if you had a predisposition towards it.

Without looking at the text in detail, I can'y say for certain what it covers, but it appears to be an attempt to prevent widespread usage of genetic testing to make employment / insurance decisions as testing id becoming cheaper.

[motivez]

I think this is a good bill. I don't want to see our society become like Gattaca

That's a extreme example obviously, but even those extremes have to start somewhere..

[thewise1]

I'm torn.

If someone with genetic 'defects' requires more medical care, well then someone's gotta pay for it. Why should an insurance company be forced to take a loss for someone else's misfortune?

Am I oversimplifying this? That seems like it could be the end result to me.

[WickedLou9]

Originally Posted by thewise1

I'm torn.

If someone with genetic 'defects' requires more medical care, well then someone's gotta pay for it. Why should an insurance company be forced to take a loss for someone else's misfortune?

Am I oversimplifying this? That seems like it could be the end result to me.

It's definately the result. If you have a genetic predisposition to some disease or condition, but you don't yet have that condition, this bill prevents the insurance companies from charging your more because of your genetic predisposition.

[7960]

Originally Posted by thewise1

I'm torn.

If someone with genetic 'defects' requires more medical care, well then someone's gotta pay for it. Why should an insurance company be forced to take a loss for someone else's misfortune?

isn't that the definition of insurance?

no insurance company would insure someone who had a 100% chance of getting in a car accident tomorrow. the game is for the insurance company to figure out how to make money by insuring enough people who won't get hit/sick to cover the people who do. if they're going to be allowed to test people (or use test results from something else) then they're getting an advantage that we don't have.

[thewise1]

Originally Posted by 7960

isn't that the definition of insurance?

no insurance company would insure someone who had a 100% chance of getting in a car accident tomorrow. the game is for the insurance company to figure out how to make money by insuring enough people who won't get hit/sick to cover the people who do. if they're going to be allowed to test people (or use test results from something else) then they're getting an advantage that we don't have.

I thought someone might call me out on that poor wording - Yes, that's the definition of insurance, but they do so in such a fashion that they try to predict the future.

For instance, if I go buy car insurance, they use my age, my gender, my driving history, the area I live in, my credit score, and probably a hundred other small factors to generate a risk model for my situation. If the risk is high, they choose to not insure me - by refusing me or dropping me eventually - or they charge me more money because they know I'm a higher risk.

This ensures that they are not allowed the kind of information that they would need to more accurately forecast what is necessary.

Now keep in mind I've taken a devil's advocate standpoint here in some ways. I'm not sure that I'm really against this, but I am pretty sure I dislike it for the reasons listed above.

On the other hand, maybe this is good. I could make any number of emotional arguments in its favor, but the biggest one is probably my daughter. The doctors wrote her off as a genetic defect (trisomy 18) before even completing the tests. I would certainly not want my insurance to write her off as well, especially considering she didn't have any genetic level defects at all.

[motivez]

I mean, for an insurance company to be profitable it should definitely be allowed to make some kind of risk model for you as a person, but genetics is taking it too far IMO

We shouldn't be writing people off because of a 'predisposition' to certain things, behavior that that person has already exhibited is different -- ie credit score, previous tickets, etc..

[thewise1]

Originally Posted by motivez

I mean, for an insurance company to be profitable it should definitely be allowed to make some kind of risk model for you as a person, but genetics is taking it too far IMO

We shouldn't be writing people off because of a 'predisposition' to certain things, behavior that that person has already exhibited is different -- ie credit score, previous tickets, etc..

Then age or sex wouldn't matter... but it does.

[motivez]

I think that'll be an interesting test of this bill.. maybe we can get together a LL legal fund and sue the insurance industry

[Kytro]

Originally Posted by thewise1

I'm torn.

If someone with genetic 'defects' requires more medical care, well then someone's gotta pay for it. Why should an insurance company be forced to take a loss for someone else's misfortune?

Am I oversimplifying this? That seems like it could be the end result to me.

People with defects don't require more care unless the have some disorder or disease (which is a pre-existing condition).

What this law is saying is insurance companies cannot sue genetic testing information to determine risk.