Guarding Against Genetic Discrimination

Senate Passes Legislation To Protect Jobs Of People Using Genetic Testing To Predict Disease

(AP)  People learning through genetic testing that they might be susceptible to devastating diseases wouldn't also have to worry about losing their jobs or their health insurance under anti-discrimination legislation the Senate passed Thursday.

The 95-0 Senate vote sends the Genetic Information Nondiscrimination Act back to the House, which could approve it early next week. President Bush supports the legislation.

The bill, described by Sen. Edward Kennedy as "the first major new civil rights bill of the new century," 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.

"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Sen. Olympia Snowe, R-Maine, who sponsored the Senate bill with Sens. Kennedy, D-Mass., and Mike Enzi, R-Wyo.

There are more than 1,100 genetic tests available today, she said, but these are "absolutely useless" if fear of discrimination discourages people from taking tests or participating in clinical trials.

Genetic testing could lead to 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.

"But right now the ability to realize those goals is somewhat limited" because of patients' fears that the information will be used against them, said Dr. David Herrington, a professor of cardiology at Wake Forest University and spokesman on genetic issues for the American Heart Association. The legislation "will help them both be more willing to participate in research and avail themselves of the benefits of genetic testing."

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.

Bill sponsors said that has increased the likelihood that a prospective health insurance company or employer will reject a person because of concerns that person will suffer a costly disease in the future.

The Senate passed genetic nondiscrimination bills on unanimous votes in 2003 and 2005 but couldn't get the House to act. A year ago the House approved a White House-backed bill on a 420-3 vote.

Senate action on that legislation has been slowed by Sen. Tom Coburn, R-Okla., who joined some business groups in warning that the bill could encourage a flood of lawsuits.

A compromise worked out earlier this week tightens language to ensure there is a "firewall" between the part dealing with health plans and the section regarding employment, so as to discourage inappropriate claims.

It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the actual presence of a disease.

"We certainly improved the bill from a liability standpoint," said Coburn, an obstetrician. He said he was an adamant supporter of the legislation "if it is not designed to feed the trial lawyers."

Dr. Francis Collins, genetics chief at the National Institutes of Health, said it's difficult to know how often genetic discrimination has occurred because victims are reluctant to come forward.

He cited one example of a Texas-based railroad that once conducted genetic tests on workers complaining of carpal tunnel syndrome in an effort to argue the injuries weren't job related if patients had a genetic predisposition.

"All of us carry glitches in our DNA and we're learning more and more about those every day," he said. "A system that allows that information to be used to deny people health care or a job is a system that has lost its way. This is a civil rights issue and it's high time we took care of it."

[memerider]

This is good legislation because we need this data to learn ways to help the population, and people are afraid to even learn about their genetic makeup because they may lose jobs and critical resources.

[cyberus-2009]

Of course there will be nothing to stop them from taking blood/urine samples to test for nicotine and illegal drugs .. while also testing for the markers, followed by a *sorry the position is filled* letter.

[brianbwb-2009]

There is a genetic test that has been used for generations for the exact purpose of discrimination, the test is called "sight". Recognizing ethnicity, and using it to, for example, discriminate against "Black" people, is genetic discrimination, so what is the difference, other than many "White" people might be discomfited by finding out that they are not as "white" as they thought, that they are in fact closer to the ethnic group they have been raised to hate?

[johngoodnews]

Posted by cyberus at 09:17 PM : Apr 24, 2008

Of course there will be nothing to stop them from taking blood/urine samples to test for nicotine and illegal drugs .. while also testing for the markers, followed by a *sorry the position is filled* letter.
**************

Well, think about it--do you really want to hire a person who''s genetic profile attests to a cynical, trouble causing personality with a penchant for downloading donkey porn and photoshoping his supervisors'' heads onto the actors and then emailing everybody with a copy?

[lochlan-2009]

The only way congress is going to pass this is by knowing they are going to make health insurance mandatory.

[rf35]

Well, think about it--do you really want to hire a person who''''s genetic profile attests to a cynical, trouble causing personality with a penchant for downloading donkey porn and photoshoping his supervisors'''' heads onto the actors and then emailing everybody with a copy?

Posted by johngoodnews at 12:31 PM : Apr 25, 2008

Thanks for the idea...I''ll let you know haw it goes over.

[bobnjersey]

[Well, think about it--do you really want to hire a person who''''s genetic profile attests to a cynical, trouble causing personality with a penchant for downloading donkey porn and photoshoping his supervisors'''' heads onto the actors and then emailing everybody with a copy]
[Posted by johngoodnews at 12:31 PM : Apr 25, 2008]

take a guess who is the only group of people who are exempt from the drug testing laws.

[incog-nito]

No they won''t be able to denie you health insurance. They''ll just either raise the premium until you can''t afford it anymore, or find some excuse to denie coverage.

The real solution: Universal Health Care.