Genetic Discrimination - Laws Against Discrimination

Laws Against Discrimination

Those recommendations, and earlier ones issued by the ELSI Working Group and NAPBC led, in part, to new legislation and policies at both the federal and state levels. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 provided the first federal protections against genetic discrimination in health insurance. The act prohibited health insurers from excluding individuals from group coverage due to past or present medical problems, including genetic predisposition to certain diseases. It limited exclusions from group plans for preexisting conditions to 12 months and prohibited such exclusions for people who had been covered previously for that condition for 12 months or more. And the law specifically stated that genetic information in the absence of a current diagnosis of illness did not constitute a preexisting condition.

The next step in addressing the issue of genetic discrimination was taken by President Bill Clinton. The President had earlier supported proposed legislation that would have banned all health plans - group or individual - from denying coverage or raising premiums on the basis of genetic information. When the legislation failed to pass Congress, 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.

There continues to be a high degree of interest in these topics in state legislatures. More than one hundred bills were introduced in state legislatures in 2000 alone. Some would inaugurate protection from genetic discrimination while others would modify or clarify existing legislation.

Legislation in the United States called the Genetic Information Nondiscrimination Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. It was signed into law by President George W. Bush on May 21, 2008. The law does not cover life insurance nor long-term care insurance, which has already created problems for some patients who have undergone genetic testing.