House to approve anti-genetic discrimination bill

WASHINGTON -- Congress on Thursday moved toward passing a landmark anti-genetic discrimination bill making it illegal for insurance companies or employers to raise rates or refuse jobs and insurance because of a chance that people's genes might cause a debilitating disease like cancer or Alzheimer's.

The House is expected to overwhelmingly pass the legislation a week after it passed the Senate on a 95-0 vote. The bill would bar 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.

Rep. Louise Slaughter, D-N.Y., said that for years doctors have been forced to tell women whose families have a history of breast cancer to refuse genetic testing for fear of discrimination.

"They have recommended to them that until a bill such as the one we are passing today becomes law in this country, they should not put at risk their health insurance," Slaughter said.

Without genetic testing, researchers say it will be more difficult to find 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.

"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 Rep. Louise Slaughter, D-N.Y.

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.

"Currently the fear of misuse of genetic information is preventing people from getting these important genetic tests done," said Rep. Pete Sessions, R-Texas. "The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike. Lack of testing denies individuals important medical information that they could otherwise use to be proactively managing within their health with their doctor."

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.