Genetic Discrimintaion

[KillerMuffin]

How much of a problem is it? How much of a problem will it be? In the context of those going to school, getting a job, being on a sports team, getting health insurance, errata. If they can see if you're predisposed to diabetes, epilepsy, alcoholism, or whatever genetically prior to getting a job or getting health insurance, would it be a problem? Should steps be taken to stop it?

Bush on GD:

CRAWFORD, Texas (Reuters) - President Bush on Saturday proposed forbidding employers, insurance companies and others from denying jobs or health coverage to people based on their genetic makeup.

Bush said in his weekly radio address that scientific advances making it possible to unlock a person's genetic code have also opened the door to potential discrimination against people with a genetic propensity to disease.

"Genetic discrimination is unfair to workers and their families," Bush said in the address. "It is unjustified, among other reasons, because it involves little more than medical speculation."

The address was recorded on Thursday and broadcast while Bush was taking a weekend break at his ranch in Texas.

Bush said he was working with Congress to develop legislation that would outlaw such discrimination.

Rep. Louise Slaughter, a New York Democrat, welcomed Bush's interest in the issue, "given the fact that the Republican leadership in the House of Representatives have failed to act on this issue for over five years."

Slaughter has sponsored a bill that would ban discrimination in the workplace and in health insurance on the basis of genetic information. Her legislation has 250 bipartisan co-sponsors in the House, and Senate Democratic Leader Tom Daschle has sponsored a companion bill in the Senate.

"I hope the president will support this strong, enforceable genetic nondiscrimination bill," Slaughter said in a statement. "We must pass this law as soon as possible because individuals are already suffering genetic discrimination."

SIMILAR LEGISLATION IN TEXAS

The White House said Bush had signed legislation while he was governor of Texas to outlaw genetic discrimination in employment and group health plans.

Genetic differences have been linked to up to 4000 diseases, including cystic fibrosis, cancer, Alzheimer's, diabetes, schizophrenia and heart disease, the White House said.

However, said Bush: "A genetic predisposition toward cancer or heart disease does not mean the condition will develop. To deny employment or insurance to a healthy person based only on a predisposition violates our country's belief in equal treatment and individual merit."

"Just as we have addressed discrimination based on race, gender and age, we must now prevent discrimination based on genetic information," he said.

Bush also used the address to make another pitch for his version of "patients bill of rights" protections for customers of health maintenance organizations (HMOs), as the U.S. Senate debates the issue.

Democrats won an early procedural test on Thursday on a bill which Bush has threatened to veto for failing to adequately limit lawsuits, but key Democrats on Friday signaled they could support changes in their favored bill to limit the liability faced by employers.

"The system should not favor HMOs, and it should not favor trial lawyers," Bush said. "It should favor patients, with quick action to make sure they get the treatment they need."

 

[Barb Dwyer]

KM,

While it started out as a noble and worthy scientific journey to discover our origins and our complexities, the Human Genome Project has now set in motion a potentially dangerous chain of events.

By mapping all the genes in the human body, we are now able to develop better treatments to ease the suffering of victims of untreatable or incurable diseases. But there is a dark side to this technology….genetic discrimination.

Once corporations and insurance agencies have access to genetic testing protocols and data, millions of people will be denied insurance for diseases they have yet to realize. And, indeed, may not contract until 30 to 40 years later in their lives. I believe that this new form of pre-existing condition aided by genetic testing will fuel a wave of genetic discrimination affecting millions of lives.

I can see a future where a fetus will be tested for genetic 'purity' and thousands denied medical coverage before they are born into this world. This is like a genetic scarlet letter that will follow them the rest of their natural lives. Workers will be denied promotions, advancement or special assignments due to a genetic file that indicates their future medical outlook. Thousands of potential employees will be denied hiring due to genetic factors deemed burdensome to corporations who cannot see further than their bottom line. These genetic factors will have nothing to do with their qualifications for a job, promotion, advancement, or other work-related opportunities. Genetic testing is bound to become a high-tech excuse to save money by cutting off employees before expensive retirement plans and medical insurance is established. And, it will be very difficult to prove this type of discrimination in a court of law.

It is imperative for employers, insurers and government to remember that genetic conditions are universal. Every man, woman and child has some genetic predisposition, condition or disease resulting from inherited or acquired genetic changes. They also need to respect that genetic information is inherently personal and must be treated as confidential and proprietary. It seems ludicrous to have to point out that access to health care, education and employment is essential to all individuals, regardless of genetic inheritance.

Some potential problems in this area might already be occurring. For instance, people might make major life decisions to avoid the risk of discrimination. That could lead to them refusing genetic testing in order to safeguard employment and health insurance, and possibly resulting in significant health consequences.

As I understand it today, when we sign release forms at a doctor's office or complete an insurance claim, we are agreeing to the possibility that they will share this information with others. Once given, it is very difficult to rescind. Currently, The Fair Credit And Reporting Act allows anyone from department stores, credit bureaus, employers and virtually anyone with the cash, to access our medical information. Until recently, however, our private information was relatively safe from prying eyes. One had to make a concerted effort to access our information.

Let's keep in mind that we all possess imperfect genetic inheritances that will become equally and increasingly transparent with tomorrow's technologies.
I can't think of any greater invasion of privacy than this. And the consequences?

The exclusion of individuals from jobs and health services on the basis of their genetic make-up risks the formation of an uninsurable and unemployable subclass at enormous financial, public, and moral cost.

Now that the genetic code has been fully identified, the need for federal protections against the abuse of such personal genetic information is imperative.

 

[Mischka]

Once corporations and insurance agencies have access to genetic testing protocols and data, millions of people will be denied insurance for diseases they have yet to realize.

If we reach the point where we can accurately pinpoint all genetic diseases, then the insurance industry as we now know it will be obsolete. Besides accidents and emergency room visits, insurance is built on long-term illnesses. By the time we can map every person's genetic code, industry will have adapted and we will live under a different system. And I doubt there will ever come a time where we can pre-diagnos every illness or disease. Genetic predispositions do not always develop into illnesses, while others are afflicted with illnesses that no one could foresee.

 

[Todd]

Canada already has genetic discrimination to an extent

most insurance companies, will not even look at insuring you if you have a "preexisting condition" i.e Diabetes, Thyroidism, eye, cavities, hearing, cancers, arthritises, hiv's, etc.

here in canada Insurance companies do not want to pay out for prescriptions, dental care, eye care, ear care etc.

They don't mind you paying the companies, they just don't want to have to dish that money back out in a service of some sort.

 

[Mischka]

That's because you have socialized medicine, Todd. Simply the worst approach to medical care.

 

[Todd]

and if the "Patients Bill of Rights" bill passes down there with in 3-7 years so will the americans

 

[bluntforcemama]

Ah, the smell of inevitability. We can't stop it.

 

[Barb Dwyer]

And I doubt there will ever come a time where we can pre-diagnos every illness or disease.

Mischka,

Currently, tests are available for approximately 700 genes, most of which are associated with relatively rare conditions. That small number will soon grow to the thousands, providing the ability to identify predispositions and susceptibilities to myriad common health problems. Since each individual carries a number of mutated genes, genetic discrimination and issues of privacy threaten each of us

Genetic predispositions do not always develop into illnesses, while others are afflicted with illnesses that no one could foresee.

And that is the problem in a nutshell. These genetic markers only trace or foretell the possibility or likelihood that we may develop a particular disease. What worse kind of discrimination is there than that??? Excluding a portion of the population for an assumed outcome?

 

[Mischka]

and if the "Patients Bill of Rights" bill passes down there with in 3-7 years so will the americans

No we won't. Every time it comes up, people point to you guys and then we remember how horrid a system it is. Unless and until you get it right, there is no way we're socializing. The AMA is too powerful, Patient's Bill of Rights or not.

 

[Todd]

No we won't. Every time it comes up, people point to you guys and then we remember how horrid a system it is. Unless and until you get it right, there is no way we're socializing. The AMA is too powerful, Patient's Bill of Rights or not.

You just continue thinking those happy thoughts

and remember the government only has your best interest in mind

 

[Mischka]

And that is the problem in a nutshell. These genetic markers only trace or foretell the possibility or likelihood that we may develop a particular disease. What worse kind of discrimination is there than that??? Excluding a portion of the population for an assumed outcome?

I suppose this is the optimist in me, but I expect genetic testing to be used to benefit the health care industry, including the accompanying insurance industry. Right now, we waste millions on tests and procedures that people do not need. By eliminating this waste, we can re-direct the money to those that need it. I don't know how it will all play out, but I expect a system-wide overhaul. After all, if we can diagnose and treat a disease at the earliest detection (even at birth or in the womb), think of how minute the price will be to correct the problem than the uncertainty and waste we now have to endure.

 

[Mischka]

You just continue thinking those happy thoughts

and remember the government only has your best interest in mind

Yes, I will continue to think happy thoughts. It's carried me to fabulous places so far, and I fully expect the trend to continue. And I'm not delusional, Todd. The government is a complex business. It of course has to keep the interest of its customers - the citizens - in mind, but that does not always translate into fulfilling our every interest. But capitalism balances and works with the system. We've had our hiccups, but overall, we seem to be hashing out a pretty good plan the last few centuries. I expect that trend to continue as well.

 

[CelestialBody]

Anyone have any idea

 

[Mischka]

Hey CB -

Genetic testing is more of a future idea, not an idea to implement with current generations. I recently read an article advocating limited genetic testing of all people, starting at birth. The article argued that the blood tests done at birth can also be used to create a DNA finger-print. Only a small portion of the DNA needs to be used, and it does not reveal anything about the person's disease history, etc. The purpose of this genetic finger-print is similar to the finger-printing system we currently have in place - to quickly identify crime-scene suspects. The major argument against this would be the potential of someone getting their hands on the rest of the DNA.

 

[Barb Dwyer]

I suppose this is the optimist in me, but I expect genetic testing to be used to benefit the health care industry, including the accompanying insurance industry. Right now, we waste millions on tests and procedures that people do not need.

Well, yes, that is an optimistic and idealistic point of view, but one that I share with you. As I said at the outset, the HGP is a marvelous example of the cooperation and foresight of our scientific community.

What started 11 years ago as an attempt to identify the human genome - which is all the DNA in an organism, including its genes - had noble and practical goals.

The plan was to:
-identify all the approximate 30,000 genes in human DNA
-determine the sequences of the 3 billion chemical base pairs that make up human DNA
-store this information in databases
-improve tools for data analysis
-transfer related technologies to the private sector, and
-address the ethical, legal, and social issues that may arise from the project.

So, what can we gain from this research? Knowledge about the effects of DNA variations among individuals can lead to new ways to diagnose, treat, and someday prevent the thousands of disorders that affect us. Besides providing clues to understanding human biology, learning about nonhuman organisms' DNA sequences can lead to an understanding of their natural capabilities that can be applied toward solving challenges in health care, energy sources, agriculture, and environmental cleanup.

This project has spawned a new industry - biotechnology and has thus created jobs for another generation of researchers.

But KM posed a question regarding the deleterious effects of this knowledge. Not the good which scientific research has brought us. One further point to consider is that because DNA samples can be held indefinitely, there is the added threat that samples will be used for purposes other than those for which they were gathered initially.

As for the expense of testing, that is something that will no doubt be borne upon the shoulders of the patients - I am sure the insurance companies will figure a way to squirm out of that as well!

But many couples already undergo such testing now-especially when their particular family backgrounds demonstrate inherited diseases. Many women undergo testing for breast cancer detection in order to determine risk and prepare contingency plans. It is not that far in the future.

And, a simple blood test, saliva swab or other means of collection takes little time and can be stored indefinitely. As this becomes second nature, costs will come down.

 

[Laurel]

LOL! Socialized medicine is bad? Well, drug company monopolies and paid-off politicians ain't so great either.

Get this...My doctor prescribed a specific type of allergy medicine. It worked wonderfully for two years. Then, my wonderful HMO decided that the profit margin wasn't high enough on that particular drug, so they would no longer cover it. They - not my doctor, but a bunch of greedy pencil-pushing asshole HMO execs -changed my prescription to an entirely different drug. I, trusting in the wisdom of Corporate America, took the drug for the first time on Tuesday - and had such a bad reaction to it that I was unable to do anything for 24 hours. Nausea, dizziness, tingling in my legs and arms...I couldn't stand up, couldn't eat.

I'm sorry, but it's ludicrous that I have to pay $75 a month ON TOP of the $200 a month I already pay because the HMO's and drug companies want to pad their bottom line - at the expense of my health!

Todd - you seem to distrust government yet blindly believe in big corporations. THEY'RE THE SAME PEOPLE, DAMNIT! Socialized medicine may not be the answer, but neither are corporate monopolies and price collusion. The health care situation is fucked beyond belief, and I think there's nothing wrong with holding drug companies and corporations accountable for their actions, any more than I think it's wrong to hold government accountable for its actions. If you believe in one and not the other, you are a fool.

</rant>

 

[Todd]

Laurel I don't trust big corp eiother, and i don't recall ever saying I did, they are just another pawn

Big government, big Cusiness, Big drug, Big alcohol all just pawns of a dark prince.

 

[Laurel]

Big government, big Cusiness, Big drug, Big alcohol all just pawns of a dark prince.

What does Naseem Hamed have to do with this?



(just a bit of boxing humor, lol. a very small bit.)

 

[Todd]

What does Naseem Hamed have to do with this?

(just a bit of boxing humor, lol. a very small bit.)

cute now i am going to have to spend a week at boixing.com trying to find who Naseem Hamed is. Maybe I ought to start with what boxing is?

 

[Laurel]

LOL!

try
houseofboxing.com

 

[Todd]

LOL!

try
houseofboxing.com

boxing is so wierd, there is no naked chick managers, there are no suplexes, there are no guys stealing the other guys slut wife, there are no submission holds, there is no evil boss, its just there.

 

[KillerMuffin]

It's my understanding that two groups are studying the project, a government funded not for profit group whose results, should they do the human genome first, will be free for the benefit of mankind. Then there is a corporation studying even more diligently. They will of course, patent the human genome and charge for it's use. So what happens if they patent DNA? Can they?

 

[Son of a Sailor]

If you can't beat them!

Call me a cynic but I just can't imagine something so potentially lucrative as the Genome project being made available free for the good of mankind. You can't put the Genie back in the bottle, so there is nothing to do now except patent our DNA in the off chance that one of us has chanced on something that is comercially viable.

 

[Barb Dwyer]

Don't most things usually come down to money? Altruism flies out the window when you're talking billions of dollars to be made on all the information gathered in such an undertaking.

The flood of data and related technologies generated by the Human Genome Project (HGP) presents a broad array of commercial opportunities. The possibilities for varying applications run the gamut from medicine and food to energy and environmental resources.

Established companies in diverse industries are rushing to retool to take advantage of these new opportunities. Old guard companies such as IBM, Compaq, DuPont, and major pharmaceutical companies are among those interested in the potential for targeting and applying genome data.

And, as I stated in an earlier post, many new start-up ventures are seeking a role in the biotech field. Dozens of small companies have sprung up to sell information, technologies, and services to facilitate basic research into genes and their functions.

There are hundreds of other applications for this information that touch other areas of the economy. For instance, in clinical medicine DNA information can provide new diagnostic tools, drugs, and other therapies.

We keep forgetting that this information is translated to the animal kingdom as well and we can develop hardier, more nutritious, and healthier crops and animals. We have had genetically modified food for decades, but the scope is just beginning to unfold as to its benefits in terms of production.

If you are concerned about the environment, keep in mind that some of the findings will be used in industrial processes to create cleaner and more efficient manufacturing in such sectors as chemicals, pulp and paper, textiles, food, fuels, metals, and minerals. At the other end of the spectrum, there will be advances in environmental biotechnology. This will precipitate inventions of new biodegradable products, new energy resources, environmental diagnostics, and less hazardous cleanup of mixed toxic-waste sites.

Mishcka commented on DNA fingerprinting. This can be applied not only to the topic at hand - invasion of our privacy and predictability of future health concerns - but in many other venues as well. This includes identification of other animals, plants, and microbes; evolutionary and human anthropological studies; and detection of and resistance to harmful agents that might be used in biological warfare. (What country wouldn't pay through the nose to get their hands on that kind of information?)And just think of the financial rewards for discovering the cure for the common cold!

For a time (during the last 2 years especially) there cropped up a dispute between the publicly funded HGP (from the NIH and DOE) and the private sector. From the start, HGP planners anticipated and promoted the private sector's participation in developing and commercializing genomic resources and applications.

The fact that there is a conflict between public health concerns and private enterprise is not surprising. It does boil down to scientific vs commercial goals. The HGP's commitment from the outset has been to create a scientific standard (an entire reference genome) available to all.

The largest 'competitor' to whom you alluded is Celera Genomics who provided the impetus for the race to be first to map out the human genome. They believe that most of the data are proprietary and should only be made available for a fee. (In addition, other companies such as Incyte or HumanGenomics, are filing numerous patent applications to stake early claims to genes and other potentially important DNA fragments.)

So, apparently, everyone involved does believe it to be of economic priority.

 

[Andra_Jenny]

I just skipped to the end

insurance may be obsolete for those who do not have good credit now. Has anyone been paying attention to that trend?