New Bill Encourages Genetic Testing While Protecting Your Privacy

President Bush received a bill from Congress on Thursday that would forbid employers and insurance companies to use results of genetic tests as reason to reject job applications, promotions, or health care coverage. In addition, insurance companies would not be able to set or increase insurance premiums based on the information.

The bill—HR 493—generally forbids discrimination against people whose genetic information shows a predisposition to certain illnesses such as cancer, diabetes, heart ailments, among others, and won final U.S. congressional approval on Thursday, May 1 after having been originally introduced thirteen years ago. Federal law already bans discrimination by race and gender.

The bill additionally bans employers, unions, and employment agencies from using genetic information in the hiring or firing process or in pay or promotion evaluations. It would also stop health insurers from forcing applicants to take genetic tests for coverage determination. These practices have kept some people from taking genetic tests, which could lead to treatment of their illnesses for fear of losing employment or insurance coverage.

The House of Representatives passed the bill, 414-1, and the Senate approved the bill 95-0 last week. The only member of Congress to vote against the bill was Representative Ron Paul, Republican from 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.

President George W. Bush has promised to sign the Genetic Information Nondiscrimination Act into law very soon. Lawmakers and advocates are calling the bill "the first major civil rights act of the twenty-first century."

Chief sponsor of the bill, Democratic Representative Louise Slaughter of New York stated, "By prohibiting the improper use of genetic information, Americans will be encouraged to take advantage of the tremendous life-altering potential of genetic research." She also noted that this legislation marks the beginning of a new era.

Lead Republican sponsor of the bill, Representative Judy Biggert of Illinois, said, "No one should fear for their job or health coverage because of the genes they were born with, and now they won't have to." In addition, she stated, "Make no mistake: this bill will dramatically reduce health care costs while saving or extending human lives." Biggert also noted that studies show that 85 percent of Americans fear that employers will use genetic information to discriminate.

In 2001, a study was done by the American Management Association, which found that almost 66 percent of major U.S. companies require medical examinations for new hires. 14 percent perform tests for susceptibility to workplace hazards and 3 percent for susceptibility to breast and colon cancer as well as 1 percent for sickle cell anemia. In addition, 20 percent collect information about family medical history.

According to the National Human Genome Research Institute, each of us probably has six or more genetic mutations that place us at risk for some disease but it does not means that a disease will develop. A person is just more likely to get a disease with the genetic mutation than someone without it. The institute also confirmed that 41 states already have enacted legislation related to genetic discrimination in health insurance and 31 states adopted laws regarding genetic discrimination in the workplace.

Lawmakers said that genetic testing will help researchers develop early, lifesaving therapy for many diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson's disease. It will also help doctors catch problems early, perhaps leading to preventive treatment and lower medical costs.

In a statement, Karen Ignagni, chief executive of America's Health Insurance Plans, stated, "This legislation will strengthen patients' privacy protections while preserving their access to health insurance plans' innovative prevention and coordination programs."

Although the law is meant to prohibit discrimination by insurance companies based on genetic tests, the bill allows them to urge patients to take them to help find the best and least expensive therapy for patients.

After it becomes law, the health insurance measure will not go into effect for a year and the employment measure will take effect after 18 months. Some experts believe that the bill may be hard to enforce and it does not address discrimination by long-term care insurers or life insurers.