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A more than ten year effort led by U.S. Senator Olympia J. Snowe (R-Maine) to prohibit genetic discrimination culminated today with President Bush signing the Genetic Information Nondiscrimination Act (GINA). This landmark legislation protects individuals from discrimination by prohibiting employers and insurers from using genetic information in employment and health insurance decisions.
"Today marks the culmination of an effort that began more than ten years ago to put into place landmark protections to safeguard Americans against genetic discrimination," said Senator Snowe. "Like discrimination based on race and gender, genetic discrimination is based on the unchangeable and, because the information must be sought out by the offender, is equally offensive. Up until now, our laws have not kept pace with emerging technology, and doubts about the misuse of genetic information are preventing Americans from participating in test that could improve their long-term health."
The issue of genetic discrimination was first brought to the Senator’s attention by one of her constituents, Bonnie Lee Tucker, who wrote to the Senator more than ten years ago expressing her fear of having the breast cancer (BRCA) gene test, even though nine women in her immediate family had been diagnosed with breast cancer, and she herself is a survivor. She was worried that the results of the BRCA test would ruin her daughter's ability to obtain insurance in the future.
"Bonnie’s story brought to light a new kind of discrimination that wouldn’t have been thought possible only ten years before," Senator Snowe noted. "The advent of new science and technology has changed the way we fight disease and as our methods change, so must our laws. The passage of GINA is a landmark moment in our ongoing effort to fight discrimination."