Congress passes anti-genetic discrimination bill

WASHINGTON -- 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.

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The bill number is H.R. 493.

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On the Net:

For bill text: http://thomas.loc.gov

Frequently asked questions about genetic testing: http://www.genome.gov/19516567