Congress acts to protect your genetic makeup
WASHINGTON -- Anyone who can trace breast cancer in the family, or sickle cell anemia, Lou Gehrig's or some other affliction, will be understandably concerned about a genetic test showing a predisposition for debilitating diseases.
But what they shouldn't have to worry about is a health insurer using that information to raise their rates, or their boss firing them to save on the company's medical costs, a problem Congress hoped to solve Thursday when it overwhelming passed the nation's first anti-genetic discrimination bill.
President Bush is expected to soon sign the Genetic Information Nondiscrimination Act, which 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.
Lawmakers and advocates called the bill "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?"
Lawmakers and advocates told tales of Americans using fake names, or paying cash or flat-out refusing genetic tests out of fear their companies or insurers would find out what was in their genes.
That's bad for researchers, who need genetic testing to develop cures for crippling diseases such as cystic fibrosis, Huntington's or Lou Gehrig's.
"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, a Hinsdale Republican.
It's also potentially harmful to people, said Rep. Louise Slaughter, D-N.Y.
"Consider that genetic tests can tell a woman with a family history of breast cancer if she has the genetic mutation that causes it long before the cancer develops," Slaughter said. "Armed with this information, this woman can make important health decisions on when to engage in preventive care and when to seek early treatment."
Americans have had good reason to worry about the use of their genetic information.
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.
A 2001 study by the American Management Association showed that nearly two-thirds of major U.S. companies required medical examinations of new hires. Fourteen percent conducted tests for susceptibility to workplace hazards, 3 percent for breast and colon cancer, and 1 percent for sickle cell anemia, while 20 percent collected information about family medical history.
More Americans will opt to get genetic testing if they don't have to worry about a simple predisposition being used against them, advocates said. 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.
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.
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.
"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."
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 potentially crippling affliction.
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.