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Recently, the U.S. Senate voted in favor of the Genetic Information Nondiscrimination Act, or GINA (S. 358). This legislation aims to protect people with or at risk for a genetic disease from discrimination in the workplace or by a health insurance provider. This bill also protects people who participate in clinical trials from discrimination as well.
Thirteen years ago the first version of GINA was introduced into the House by Louis Slaughter, a democratic Representative from NY. It has reappeared in every Congress since. Despite broad support for the bill, GINA was never passed in both the House and the Senate during the same session. Many feared the bill was destined for that familiar fate in this Congress as well when action on GINA was stalled in the Senate after it was passed in the House in April of 2007 by a vote of 420-3. Fortunately for all of us, that was not the case.
Over the past year, genetic disease organizations, medical professionals and Americans across the country have pressured the Senate to bring GINA to a vote. The result was an impressive amount of support for the bill and momentum toward seeing it passed. At the time of the vote GINA had 46 sponsors. Everyone who talked to their Congress members about the need for this bill and encouraged their support had a hand in this victory.
The passage of GINA will greatly benefit people living with or at risk for a genetic disease. For years, in the absence of federal protections against genetic discrimination, people have lived in fear of suffering discrimination both in the workplace and from their insurance providers. This fear led people to be less proactive about managing their health and to opt out of participation in clinical trials and research studies that had the potential to bring new therapies for their disease. There were many instances where people who did reveal their gene status or risk for an inherited disease were bypassed for promotions, fired from work, subjected to higher health insurance premiums or to full termination of their benefits. Some state laws provide limited protection from such abuse, but the passage of GINA provides the first comprehensive, federal protection from such discrimination from which all Americans will benefit.
GINA still must be signed into law by President Bush, who has stated his support for the bill. With overwhelmingly supportive votes in both chambers of Congress, we anticipate GINA to sail through the signing ceremony, which is expected soon.
This announcement is from HDSA, April 2008
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HDSA Center of Excellence at Hennepin County Medical Center