WASHINGTON -- Coming to grips with the growing role of genetic testing in American life, Congress acted yesterday to outlaw the use of genetic information in employment or insurance decisions.
The Senate approved a measure, which the House of Representatives is expected to ratify and President Bush to sign, that would become the first federal law dealing with the growing role of genetics in the prediction, diagnosis and individualized treatment of disease.
Many patients who could benefit have refused genetic testing out of fear of discrimination, experts say, and potentially groundbreaking research into the molecular causes of disease has been stymied because possible study subjects, fearing repercussions, refuse to participate.
"A cloud has finally blown away," said Dr. Francis S. Collins, director of the National Human Genome Research Institute. The agency estimates that one in three otherwise willing study subjects, worried about what might happen if their genetic information was released, refused to participate, thwarting research on health disparities and colon cancer.
By removing a major obstacle to research and use, the law would essentially clear the way for the wider application of genetic information in medical care, supporters said.
"It's really about a revolution in medicine that we haven't seen since penicillin and the stethoscope, a tool that has not been broadly used so far but will really give us insight into disease and the body," said Sharon Terry, president of the Genetic Alliance, a coalition of interest groups.
Often known by its acronym, GINA, the Genetic Information Nondiscrimination Act would prevent health insurers from using genetic information to deny coverage or raise rates. It would also bar employers from using genetic information in hiring, firing or placement of workers. Neither insurers nor employers could require genetic testing.
Already, 600 laboratories perform tests designed to detect 1,260 inherited conditions or the risk of diseases such as breast cancer, according to Genetests.org. Some doctors use the tests to determine the proper dosage of antidepressants and of a drug commonly prescribed to reduce the chance of blood clots.
The most famous example of employment discrimination took place at Burlington Northern Santa Fe Railway, which in 2002 agreed to pay $2.2 million to 36 employees who said the company illegally tested their blood samples to claim that a genetic defect caused workplace injuries.
