Senate Passes Genetic Discrimination Bill

[Guest guest]

Senate Passes Genetic Discrimination Bill

http://www.nytimes.com/aponline/us/AP-Genetic-Discrimination.html?

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By THE ASSOCIATED PRESS

Published: April 24, 2008 Filed at 7:15 p.m. ET

WASHINGTON (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. 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. 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.''

Rep. Louise Slaughter, D-N.Y., chief House sponsor of the bill with

Rep. Judy Biggert, R-Ill., said the House would ''get it out to the

White House as quickly as we can.'' Slaughter, who first introduced a

genetic discrimination bill 13 years ago, said personalized medicine

advanced by genetic research has ''the potential to save billions of

dollars in health care costs.''

Dr. Francis , 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.''

[Guest guest]

Thanks, Gretchen, for the update on the GINA law (HR 493).

The exact wording of the legislation is posted online here:

http://thomas. loc.gov/cgi- bin/query/ F?c110:3: ./temp/~c110H6P9 52:e2304:

I found two key points:

1.  The law doesn't apply if an individual already has  " the manifestation of a

disease or disorder " .

2.  The genetic testing isn't protected if  it " 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. "

I didn't see definitions of " manifest " or " reasonably detectable " and it raises

many questions in my mind about how this would apply to CMT.  It's possible

there could be some early situations with CMT testing that would be protected,

but how long would that last?  Would even the slightest symptom cause the legal

protection to end? 

These genetic advances are very exciting, but the accompanying legislation is

just in it's infancy.  It's going to take time for the legislation to be

clarified & refined. This isn't just an issue for CMT.  When, for example, does

a marker for " weak arteries " turn into heart disease that would be considered

" manifest " and  " reasonably detected " by a physician?  With over 1,100 genetic

tests available today, additional legislation may be needed to define the terms

such as  " manifest " and " reasonably detectable " for every marker. 

It will be very interesting to see how these matters are addressed.  Again,

Gretchen, thank you for doing a great job of keeping us informed!