Genetic Testing Spurs Orwellian Fears

I wanted to make sure everyone here at MyDD was aware of this important piece of legislation I am co-sponsoring.  If passed and signed into law the "Genetic Information Non-Discrimination Act" could very well protect each and every one of us in the years to come.  Please take a moment to read my recent press release on the issue and this recent story from UPI.  This issue, while not politically hot right now, should be closely followed by all privacy rights advocates and I hope you will follow the issue closely as a blog community.

-LMS

Press Release:

Rep. Slaughter Introduces Genetic Information Non-Discrimination Act

UPI News Article:

Genetic testing spurs Orwellian fears

Rep. Slaughter Introduces Genetic Information Non Discrimination Act

Act Aimed at Promoting Medical Advancements and Protecting Consumers' Rights

Washington, DC - Rep. Louise M. Slaughter, today, with a bipartisan coalition of Members of Congress introduced legislation which seeks to prohibit improper use of genetic information for workforce and insurance decisions.

The Genetic Information Non Discrimination Act will protect genetic information to encourage both the public and scientific communities to take full advantage of the important opportunities genetics offer in revolutionizing quality health care in our nation.   The bill, identical to S. 306 which passed the Senate by a vote of 98-0 in February, was introduced by Representatives Judy Biggert (R-IL), Louise Slaughter (D-NY), Bob Ney (R-OH), and Anna Eshoo (D-CA) and includes a strong group of 30 bipartisan cosponsors.

"For nearly a decade, I have championed this legislation because the American people have a right to expect that when they make the decision to undergo genetic testing, their private genetic information will be protected from abuse," Rep. Slaughter said.  "Two Presidents, Two Senates, and legions of Americans have endorsed this bill.  Its time for the House to act," she added.

Rep. Slaughter, a microbiologist with a Master's Degree in Public Health, has led the fight in the House to pass legislation to ban genetic discrimination since 1995.   In the last Congress, Rep. Slaughter's bill, H.R. 1910, the Genetics Information Nondiscrimination in Health Insurance and Employment Act, had 242 bipartisan co-sponsors and was supported by over 300 organizations.  Last year, the House Republican leadership refused to bring the measure up for a vote, despite passage by the Senate and a strong statement of support by President Bush.

"In Congress after Congress, the Republican leadership has stood in the way of this very important anti-discrimination law," said Rep. Slaughter.  "We cannot allow the Republican leadership to hold this legislation hostage any longer.  Americans need to know that they can make the pro-active decision to undergo genetic testing without fear of losing their job or their health insurance," she continued.

One of the most significant scientific accomplishments in history has been sequencing the human genetic code - a breakthrough that is already transforming the battle against a broad range of medical conditions.  As a result, scientists have identified genetic markers for a variety of chronic health conditions and this increases the potential for early treatment and prevention.  Genetic testing can improve lives by providing information on how to avoid future health problems, and cope more effectively with conditions and associated costs.  The development and utilization of genetic information will also result in a maturation of the personalized medicine market, with American companies in the molecular testing market predicted to generate $4.2 billion in revenues by 2006.

Unfortunately, the ability to predict disease through genetic testing and family history opens the door for discrimination, particularly in the employment and health insurance industries.  Such a threat has deterred the public and science from taking full advantage of the important opportunities which genetic information provides.  Without appropriate protections to encourage providers, the health care community and the public to embrace genetic testing, the health care arena will be incapable of taking full advantage of the important opportunities resulting from the advancement of genetic information and technology.

"A variety of protections exist in current federal and state laws to prevent employers and insurers from denying job opportunities or health coverage on the basis of genetic information. The Genetic Information Non Discrimination Act will specify that genetic information must be protected in both insurance and employment settings," said Rep. Slaughter.



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A Question or two (none / 0)

Rep. Slaughter, what interest(s) motivate the current house leadership to obstruct passage of this bill? Have they explained their opposition?

 

543,895 votes
by Michael Bersin on Fri Mar 25, 2005 at 03:56:46 PM EST

AGE DISCRIMINATION - a much bigger problem. (none / 0)

What about AGE discrimination?

Where I live, a lot of companies, like Google, refuse to hire anybody over 35 or so. And they are laying older people (people over 30 or so..) off like crazy..

Also, if you have gone to a doctor in the last five years, you go on a blacklist that makes you essentially uninsurable if you try to buy it yourself.. (say if the crappy job you DO get doesn't offer it..)

WOULD YOUR LAW MAKE THAT ILLEGAL?

by ultraworld on Sat Mar 26, 2005 at 02:14:17 PM EST
[ Parent ]

Would you... (none / 0)

prevent insurance companies from charging higher rates as people age? Think about it.
by Paul Goodman on Sun Mar 27, 2005 at 10:48:05 PM EST
[ Parent ]

Re: AGE DISCRIMINATION - a much bigger problem. (none / 0)

Age discrimination works on both ends.  They find clever ways to fuck around with young people quite a bit.  And older people aren't being hired because they refuse to work for the wages that we invariably have to accept.  The tax structure is also set up to benefit older people.  Noone ever talks about youth issues, however.  
"You say the world has lost it's love I say embrace what it's made of" -Dar Williams
by Valatan on Mon Mar 28, 2005 at 12:48:36 PM EST
[ Parent ]

My guess... (none / 0)

I'm guess the Insurance and Business industries are afraid it will pass so their cronies in the GOP leadership are blocking it.
by PlayByTheRules on Fri Mar 25, 2005 at 04:23:26 PM EST

My reading of GOP policy is NO LAWS ON BUSINESSES (none / 0)

If you take a job, you agree that any danger you face, any decision you make, is theirs to make.

While you are alive, if you don't like something about your job, say, being made to work unpaid hours, discrimination based on anything at all, or sexual harassment, you can leave.

That's what they want. They see every single thing as independent and unrelated. Each worker is an equal in the marketplace, selling their work to the emplyer, who holds ALL the cards..

Like it was in the 19th century...

by ultraworld on Sat Mar 26, 2005 at 02:18:46 PM EST
[ Parent ]

The GOP is scared (none / 0)

They're afraid if genetic tests are publicized, their entire voter base will be discriminated out of existence.

As long as the GOP is in power, I'm not afraid, since they seem to have a thing for voters of a certain set of genetic predispositions that would be worth eliminating.  

Given the GOP's corner on the Hate, Ignorance, and Stupidity Vote, it wouldn't help their cause for society to begin running all their base into the turf.

Once the Democrats return to power, it would behoove us to begin studying the nation's genetic base and begin eliminating all the people with a genetic predisposition toward things like deep frying six whole turkeys for one meal to be served while watching a Busch series race and asking "Where's Jeff Gordon runnin'?"

by jcjcjc on Fri Mar 25, 2005 at 05:44:06 PM EST

Silly Stereotyping (2.50 / 2)

Insulting yes. Enlightening no.

Myself, I'm more likely to ask how Tony Stewart is running when I'm at the Brickyard 400 or watching a race on TV. When talking racing I'd likely turn to my cousin who follows the series, or my brother who also follows Nascar. When we get hungry we can choose from a variety of food stands at the track but one of my favorites sells huge turkey legs that taste really really good.

Of course there are plenty of people from lower income brackets there too, people who I'd expect to be part of the Democratic base.

Trouble is, many of them just don't think Democrats understand their concerns. They do know that the Republicans care about unborn life and terrorism, but they really aren't sure what the Democrats care about. They suspect it isn't them because they've heard how Democrats like Howard Dean seem to think poor people from red states are just a bunch of unworthy ignorants whose major concerns are the Confederacy, Nascar, and turkey legs.

Those elitists are wrong of course. Like me, even though they enjoy auto racing, they care about their families and jobs much more. Too bad Democrats never seem to do anything for them since they are just the sort of people that in years past voted Democratic.

by Curt Matlock on Fri Mar 25, 2005 at 07:25:02 PM EST
[ Parent ]

Re: Silly Stereotyping (none / 0)

In fairness, the Democratic Party lost those votes when Johnson made his choice on civil rights.
by jcjcjc on Sat Mar 26, 2005 at 01:37:16 AM EST
[ Parent ]

Re: Silly Stereotyping (none / 0)

I can't agree with that either. That seems to imply that Nascar fans vote Republican because of a race based grudge against Democrats (at least that's how I read your comment. That unfairly lumps them all in a very unpleasant group.

Those votes are still there to be had. You just have to show them you understand them and respect them.

I'd argue that Clinton, for example, won many of their votes not by being centrist but by having life experience that gave him empathy for how they live and by showing he cared about them and respected them.

So I don't think those votes were lost forever 40 years ago. Democrats can win them back.

by Curt Matlock on Sat Mar 26, 2005 at 05:39:17 PM EST
[ Parent ]

The Hate Vote (none / 0)

There is a hate vote out there.

Clinton won many Southern votes by executing a retarded man.

by jcjcjc on Sat Mar 26, 2005 at 11:02:11 PM EST
[ Parent ]

Re: The GOP is scared (none / 0)

This comment is silly.  Actually, their base should like this bill.  

Some years ago Kristin Luker (IIRC, now with the Rockridge Institute, I believe) did some research on what motivates people who are rabid anti-abortionists.  She was trying to see if there was some way to appeal to them to change their minds.  

What she found was that such people (and I'm guessing also much of the pack around Terri Schaivo's hospice) were somewhat lacking in ego strength.  They had a very deep fear of being marginalized.  They seemed to feel on a deep level that if the line were not held against euthanasia, abortion etc and the "sanctity of life" maintianed, that they might be eliminated one day.  So not only did the cause give them a feeling of strength in numbers, and purpose, it also made them feel that they were protected in some sense.

Assuming this all still holds, these folks should have a fear that genetic testing might lead to them being marginalized, maybe extinguished, and perhaps their offspring would be jeopardized as well.  Many people think that genetic testing will lead to eugenics or elimination of the unfit.

I think this bill is a good idea from the very rational standpoint of safeguarding people's privacy and genetic information form insurance companies and employers.  But it is also a way that is consistent with our core values to take a stand on behalf of protecting people from these kinds of scary scenarios.  In short, a good issue, but also a wedge issue.

by Mimikatz on Sat Mar 26, 2005 at 08:47:42 PM EST
[ Parent ]

Re: The GOP is scared (none / 0)

From a rational standpoint, yes.

But, since the GOP is opposed to creating recognized classes, aren't they in a bit of a spot?

by jcjcjc on Sat Mar 26, 2005 at 11:03:02 PM EST
[ Parent ]

Genetic Testing Protection Needed (3.00 / 1)

Does anyone doubt that in the future there will be routine collection of a large amount of genetic information on individuals?

This has the potential to destroy the life and health insurance industries as we know them. These industries require ignorance of how individuals will fare so that they may use statistics on groups to spread out the risk.

Take this fictional example. Assume that 20% of people nationwide who buy health insurance will eventually contract a form of cancer that will cause health costs to be paid for each individual that outstrip what those persons have paid into in premiums. They are unprofitable for the insurance companies but they are allowed to buy insurance because the seller has no idea which particular person will be one of the 20%. Thus, they are allowed to be mixed into the national pool of insured. They cost the company money when they appear but because only 1 in 5 insured have this problem the company can remain profitable.

But imagine if the persons in this 20% could be identified. By denying all persons in that group coverage the company could greatly reduce its costs. For those people, if they are known to insurance companies, there will be no hope of getting coverage because they are known to have a genetic makeup that is unprofitable.

Assume further that once identified, there is a way to cure one in ten of these unprofitable pre-cancerous 20%. If you are one of those people what should you do?

If you get tested for this disease there is a 1 in 5 chance you will be found to have the cancer genes. Luckily, there is a 10% chance you can be cured once you've been found to have the pre-cancerous genetic signature. Since you've been tested you at least have a 10% chance of being cured. So by being tested 1 in 50 people nationwide will end up cured of a fatal disease. Then surely everyone will get tested correct?

Well no. That would be crazy because you have a better chance of being found to have the disease but in an incurable form since 9 in 10 found with the problem can't be cured. The problem is, now you know you have a gene that will cause cancer but because the insurance companies know too you can't get covered. So should you get tested knowing that there is only a 1 in 50 chance that the test will end up saving your life (20% afflicted with 10% of those cured)? By getting tested you risk being in the 18% of people nationwide that find they have the disease but can't be cured and also can't get health insurance.

Do we really want to tolerate people having to deal with dilemnas like this where they are afraid to get tested for disease because they know their data has no privacy and can cost them health coverage, health care, life insurance, and employment?

As Representative Slaughter has indicated, it's necessary to protect the privacy of citizens genetic information.

by Curt Matlock on Fri Mar 25, 2005 at 07:48:53 PM EST

A thought-provoking post (none / 0)

I'll try to respond coherently.

Barring a New Dark Age, sequencing a genome will be the sine qua non of medical practice. I'll go a step further and say that micro-fluidics will be the enabling technology. Furthermore, that same technology will allow "cutting and pasting" of germ-line DNA.

Probability of disease*cost of treatment, summed for all known diseases with a genetic component = projected medical costs. There should still be an actuarial threshhold where the monthly fee can be set high enough so that an insurance company can stay afloat. That fee would probably be prohibitive for any person with a high probability of a disease. People would rather plow that money into treatment, especially at an early age (zygote??) rather than buy insurance.

Now, you suspect that people will eschew testing in order to game the insurance system. I doubt it. In order to be affordable, genetic testing will need to be comprehensive, all loci all at once. The average man won't be able to afford a custom test that will selectively skip certain loci. Parents will be expected to scan their children,  perhaps prenatally, and will be censured for child-abuse if they do not. Moreover, courtship will demand genetic disclosure, save for the atavistic few. Either you will have a complete genome scan, or none at all. That said, people will "test".

I don't mind bills like this. Actually, I chortle. Like the ban on human cloning, it bans something that cannot really be done yet. Would you care to wager that shortly after it can be done, the ban will be lifted? Your concern about those people who will be caught in an economic dilemma is a valid one that I share; it deserves an answer: the General Welfare State.

by Paul Goodman on Sun Mar 27, 2005 at 10:45:48 PM EST
[ Parent ]

Jacobsen Vs. Mass today, what do conservatives rea (none / 0)

I wrote this as a diary over at Kos , but it fits very well right here!

This month is the 100th anniversary of the extremely important Supreme Court case on individual rights versus collective state interpreted rights, JACOBSON v. COM. OF MASSACHUSETTS, 197 U.S. 11 (1905).  The April Journal of the American Public Health Association has several articles about the significance of these decision and how that decision would be viewed today.  In my view, during the last 100 years, Conservatives in American society have seen a 180 degree turnaround on the view of the use of state collective power versus individual rights in areas related to health, and now their view of state collective actions seem to jive only when the power of the state is used in their favor, regardless of the individual right versus the community concept benefit involved!!  If a group ever favors state collective actions in religious areas, aren't they setting dangerous precedents when the political pendulum goes the other way?  Can you have it both ways and what are some real world consequences?

In the Jacobson decision, the Commonwealth of Mass. was given the authority to vaccinate everyone against deadly smallpox even against individuals who wished not to be so vaccinated.  The ruling said that the safety of the majority sometimes outweighs the rights of freedom for an individual.  The religious community was more represented by Jacobson here who wanted the power of the state to just leave him alone in his personal healthcare decisions!!  

What do we see happening today. In the Schiavo case, we see the religious community asking for state action/intervention similar to Jacobson but acting for the individual's rights and beliefs to be elevated over the collective states rights benefits.  Such people want the state to keep a brain-dead person alive even if such action is against what is best for the collective social whole.  That is 180 degrees opposite from the Jacobson decision.  

There are a lot of inconsistencies going on with the religious community's views for the use of state power in such health related areas.  In Jacobson, the religious community wanted the state to leave the individual alone, but in the Schiavo case, the religious community wants the state to intervene in the care of Schiavo.  In the abortion area, the religious conservative community wants the state to intervene in the care of individuals to protect an unborn entity.  Also, in areas of individual due process rights related to freedom from state arrest, and in areas of civil rights freedoms, the conservatives now back intervention by the state here as well to limit individual freedoms such as the Patriot Act.

This all leaves me a bit confused about what exactly is the Conservative point of view for the use of State power.  Do Conservatives believe that religion and individual beliefs are best left to individuals free from state power, or do Conservatives really believe their view is the only view and the power of the state is now needed to enforce that view.  These are diametrically opposite interpretations for the use of state power.  When you look at the pro-choice political position versus the pro-life political position, which one best describes the traditional conservative view of individual rights are best preserved by not allowing state power interventions in the decisions of individuals.  How did conservatives feel about state power actions in cases like Roe V Wade and other cases where the state tried to separate religion from everyday political life?  What is going on here?

There are some real life consequences to this schizophrenic view for the use of state collective power by the large conservative population of the US.  For example, many progressives believe that quality health care is a right and should be paid collectively for all. Quality healthcare, as we now see, can be very difficult to define and afford, so for all out there who favor a universal payer system, just what will be paid for and who will decide??  Do you think the conservatives from Jacobson's day would make the same decisions as the Conservatives of today?  In Jacobson's day, the conservatives would likely back a professional driven decision process based on individual desires!  However, the conservatives of today would likely back a political driven decision process with guess whose political views directing what is paid for and allowed in the universal system.  This is extremely divisive stuff, but would need to be dealt with before any universal healthcare system could be accepted and functional.

by NG on Sat Mar 26, 2005 at 12:28:28 PM EST

What about AGE discrimination? (none / 0)

Where I live, a lot of companies, like Google, refuse to hire anybody over 35 or so. And they are laying older people (people over 30 or so..) off like crazy..

Also, if you have gone to a doctor in the last five years, you go on a blacklist that makes you essentially uninsurable if you try to buy it yourself.. (say if the crappy job you DO get doesn't offer it..)

WOULD YOUR LAW MAKE THAT ILLEGAL?

by ultraworld on Sat Mar 26, 2005 at 02:11:32 PM EST


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