On April 26, the Genetic Information Nondiscrimination Act of 2007 (GINA - H.R. 493) passed the U.S. House of Representatives by a vote of 420-3. The bill prevents employers and insurance companies from requiring genetic testing or information, and from discrimination based on genetic information for hiring and promotions, insurance eligibility or premiums, and related matters. Without this protection, individuals who could benefit from genetic testing, including many with bleeding disorders, may avoid these tests out of fear of possible discrimination. The legislation has been introduced yearly for the last 12 years.
NHF has worked for passage of the legislation the past few years and most recently at our annual Washington Days advocacy conference and grassroots advocacy day in March. In addition to strong support from the entire bleeding and clotting disorders community, the legislation was actively promoted by a broad coalition of consumer and medical groups. These included such diverse organizations as the American Academy of Pediatrics, American Heart Association, American Society of Hematology, Cystic Fibrosis Foundation and the Susan G. Komen Breast Cancer Foundation.
Rep. Louise M. Slaughter, D-N.Y., the chief sponsor, said the need for the legislation has grown because of advances in the science. "There's not a single person on the planet who has perfect genes," she said. “We're all vulnerable to genetic discrimination.”
Rep. Judy Biggert, R-Ill., another sponsor, said the government spent $3.7 billion on the Human Genome Project, completed in 2003, and then, “Congress walked away and left the job unfinished. ... We left people without any insurance that their genetic information wouldn't be used against them.”
The parallel bill in the Senate has yet to come up for a vote. However, it passed in the Senate last year by a comfortable margin and is almost certain to pass again this year. President Bush has indicated he will sign the legislation once it reaches his desk.