After 13 years of political wrangling, the Genetic Information Nondiscrimination Act (H.R. 493) became law on May 21, 2008, when President Bush signed the legislation. The new law prohibits employers and health insurance companies from discriminating against or refusing coverage to individuals based on the results of genetic testing.
The employment provisions of the law will take effect in November 2009, 18 months after the president signed the bill. These provisions will be enforced by the Equal Employment Opportunity Commission, which must now develop a new set of regulations to enforce the new employment protections.
The provisions, which govern health insurance plans, are set to take effect in May 2009, and the law requires that the Department of Labor issue regulations to enforce these provisions 12 months after the law is enacted.
The Genetic Information Nondiscrimination in Employment Coalition, which was led by business groups such as the Society for Human Resource Management, has long supported protections for employees from genetic discrimination. The coalition worked closely with members of the House and Senate to ensure that the final measure was fair to both employers and employees.
Rep. Louise Slaughter, D-N.Y., the chief sponsor of H.R. 493, first introduced legislation to ban discrimination based on genetic information in 1995. Various forms of the bill did pass several times in the Senate, but this is the first year that the measure gained approval from both houses of Congress. White House officials made it clear that the president supported passage of the legislation and would sign the bill into law.
“This legislation not only will stamp out a form of discrimination but will allow us to realize the tremendous life-saving and life-altering potential of genetic research,” said Slaughter, who is one of the few members of Congress to have a college degree in microbiology. “This new law will usher in a whole new era of health care. These important protections will help to allow the scientific and medical communities to make critical medical breakthroughs.”
In signing the legislation, the president said: “I want to thank the members of Congress who’ve joined us as I sign the Genetic Information Nondiscrimination Act, a piece of legislation which prohibits health insurers and employers from discriminating on the basis of genetic information. In other words, it protects our citizens from having genetic information misused, and this bill does so without undermining the basic premise of the insurance industry.”
Bush continued: “I also want to pay homage today to—and not only to members of the Congress who are behind me—but also to Senator Ted Kennedy, who has worked for over a decade to get this piece of legislation to a president's desk. All of us are so pleased that Senator Kennedy has gone home, and our thoughts and prayers are with him and his family.”
The final legislation passed both houses of Congress with overwhelming bipartisan support. The Senate voted unanimously to approve the bill on April 24, 2008, and the House’s approval followed a week later on May 1, 2008, with a vote of 414-1.
The original version of H.R. 493 did pass the House in April 2007; however, the legislation hit a snag when Sen. Tom Coburn, R-Okla., expressed concerns that the bill had the potential to generate “double jeopardy” complaints against health insurers and employers. Democrats in the Senate reached a compromise with Coburn and agreed to several amendments to address his concerns.
The changes, made in the Senate and then approved by the House, create a “firewall” to avoid placing employers and health insurance companies in double jeopardy. The amendments establish several liability protections for employers and health insurance providers. The version passed by the House in 2007 would have required employers to offer health plans that covered treatments for genetic-related conditions, but the Senate compromise removed this provision.
Bill Leonard is senior writer for SHRM Online.