[Infowarrior] - Congress passes anti-genetic discrimination bill

[Richard Forno]

Congress passes anti-genetic discrimination bill

By JESSE J. HOLLAND ­ 1 hour ago

http://ap.google.com/article/ALeqM5g9PKo1Dr67gVSZWb-B4tOfMvmgDwD90D626G0

WASHINGTON (AP) ‹ Congress sent President Bush a bill Thursday forbidding
employers and insurance companies from using genetic tests showing people
are at risk of developing cancer, heart disease or other ailments to reject
their job applications, promotions or health care coverage, or in setting
premiums.

Bush was expected soon to sign the Genetic Information Nondiscrimination
Act, which lawmakers and advocates called "the first major civil rights act
of the 21st century." Federal law already bans discrimination by race and
gender.

"Your skin color, your gender, all of those are part of your DNA," said
Francis Collins, head of the National Human Genome Research Institute.
"Shouldn't the rest of your DNA also fall under that protective umbrella?"

Researchers supported the bill because Americans have been refusing to take
genetic tests or have been using false names and paying cash because they
didn't want the information used against them by their employer or insurance
company, Collins said.

The bill would prohibit 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.

A 2001 study by the American Management Association showed that nearly
two-thirds of major U.S. companies require medical examinations of new
hires. Fourteen percent conduct tests for susceptibility to workplace
hazards, 3 percent for breast and colon cancer, and 1 percent for sickle
cell anemia, while 20 percent collect information about family medical
history.

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.

"Health insurance plans are committed to protecting the privacy of patients
while ensuring that they have continued access to high quality health care
services in the emerging field of genetic medicine," said Karen Ignagni,
president and CEO of America's Health Insurance Plans, a national
association representing nearly 1,300 companies providing health insurance
coverage to more than 200 million Americans. "This legislation advances this
principle."

The House voted 414-1 for the legislation Thursday, a week after it passed
the Senate on a 95-0 vote. The only member of Congress to vote against the
bill was Rep. Ron Paul, R-Texas.

"Because of the federal government's poor record in protecting privacy, I do
not believe the best way to address concerns about the misuse of genetic
information is through intrusive federal legislation," Paul said.

Increased genetic testing makes it more likely researchers will come up with
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, lawmakers said.

Genetic testing also will help doctors catch problems early, perhaps leading
to preventive treatment and lower medical costs. Once the president signs
the bill, people "should do it and get it done right away," said Rep. Louise
Slaughter, D-N.Y.

The bill "guarantees that no one will be denied health insurance or fired
from a job because of a genetic test," said Sen. Edward Kennedy, D-Mass.

"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.

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 prohibit 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.

The bill number is H.R. 493.
On the Net:

    * For bill text: http://thomas.loc.gov
    * Frequently asked questions about genetic testing:
http://www.genome.gov/19516567