Genetic Discrimination Bill Gains House Approval
Congress passed a landmark anti-genetic discrimination bill on Thursday that forbids insurance companies from setting premiums or determining enrollment eligibility for people whose genetic information shows a predisposition to certain illnesses.
Thirteen years after such legislation was first introduced, the House of Representatives passed the bill, 414-1, and sent it to President George W. Bush, who has promised to sign it into law.
The Genetic Information Nondiscrimination Act would bar health insurers from rejecting coverage or raising premiums for healthy people based on personal or familial genetic predisposition to develop a particular disease such as cancer, diabetes, heart ailments or many others.
It also would prohibit employers, unions and employment agencies from using genetic information in hiring, firing, pay or promotion decisions as well prevent health insurers from requiring customers to undergo genetic testing.
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?"
Collins said 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.
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, according to a 2001 study by the American Management Association.
"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."
Lawmaker’s believe 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.
Scientific and health organizations say the legislation will help combat discrimination as well as diseases.
"With this measure … we expect more Americans will participate in genetic research and accept genetically directed strategies for treatment and prevention that will ultimately reduce the tremendous burden of heart disease, stroke and many other diseases in the U.S.,” said Dr. David Herrington, a representative of the American Heart Association.
Scientists have developed numerous genetic tests to assess people’s predisposition to various ailments.
According to the National Human Genome Research Institute, each person probably has six or more genetic mutations that place them at risk for some disease. That does not mean that a disease will develop, just that the person is more likely to get it than someone without the genetic mutation, researchers said.
"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.
The Genetic Information Nondiscrimination Act is intended to guarantee that results of these tests are not used against people by employers or insurers not willing to shoulder the high cost of treating some diseases.
41 states already have enacted legislation related to genetic discrimination in health insurance and 31 states adopted laws regarding genetic discrimination in the workplace, according to National Human Genome Research Institute.
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Genetic Information Nondiscrimination Act