The Genetic Information Non-Discrimination Act (GINA, HR 493) will be considered on the Senate floor tomorrow according to the Associated Press after Sen. Tom Coburn (R. Okla.), who is an MD, agreed to lift his hold on the bill. The AP story explains that
The compromise tightens language to ensure there is a “firewall” between the part dealing with health plans and the section regarding employment so as to discourage inappropriate claims.It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the actual presence of a disease
The House already has passed the bill, and presumably the compromise that lead Sen. Coburn to release his hold will satisfy the White House’s concerns about GINA as well.
The New York Times article accurately notes that federal law (HIPAA) already prohibits group health plans from discriminating in coverage based on genetic testing so this law primarily impacts individual health insurers and employers. Furthermore, as noted in genome.gov, “
President Clinton issued an executive order ( Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information) in February 2000 prohibiting agencies of the federal government from obtaining genetic information about their employees or job applicants and from using genetic information in hiring and promotion decisions
But it is a complicated law. Privacy advocates already are criticizing its “limited” scope.