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The Genetic Information Nondiscrimination Act by Orkideh Malkoc, MS Associate Director of Public Policy Genetic Alliance Washington, DC
In the effort to gain proper medical diagnosis and treatment, people are often confronted by alternate challenges — speed bumps on the way to what one hopes is recovery. The lack of federal protection against the discriminatory use of genetic information represents one such hurdle for many patients.
When the Human Genome Project began in 1990, researchers were excited to unravel the mysteries coded in the human genome. They realized the vast potential for the use of genetic information in understanding disease and developing treatments. Many of those researchers were also keenly aware of the possible difficulties that the decoded human genome might generate. Therefore, the United States government set aside funds to investigate the ethical, legal, and social issues, or ELSI, that may arise from the Human Genome Project.
By the mid-1990’s the ELSI undertaking had resulted in peer-reviewed publications concerning the potential for misuse of genetic information by health insurers seeking to raise premiums or deny eligibility or employers endeavoring to stagnate or terminate employment. By the early-2000’s, cases of such discrimination were documented. The fear of genetic discrimination influenced countless people to forgo genetic testing. Researchers noted a decrease in participation in clinical trials related to this fear. With fewer participants, the treatments and scientific knowledge gained from such studies were hindered. Due to the same fear, some medical professionals observed that many people were unwilling to learn their genetic information, which they could otherwise use to proactively manage their health.
In 1995, Representative Louise Slaughter (D-NY) introduced the first federal legislation to prohibit genetic discrimination. The year after, Senator Olympia Snowe (R-ME) introduced companion legislation in the Senate. Over the next decade, the legislation was expanded and the language was refined. In 2002, the name of the legislation was changed to the Genetic Information Nondiscrimination Act, or GINA. For the first several years of the bill’s history it faced challenges, and did not pass either chamber until 2003, when it passed the Senate unanimously. Still, the bill did not pass the House in that same Congress or the 2004 Congress.
This January, the 110th Congress began, giving GINA’s advocates another chance to pass the legislation. The House of Representatives took quick action, introducing the bill within days of the new session and passing the bill just weeks later by an astonishing 420-3 margin. In order for the bill to become a law, it must pass the Senate in this Congress and be sent to the President’s desk. The Senate has a track record of voting in favor of this legislation, having done so unanimously twice, and the President has already indicated his support for the bill. However, GINA needs all concerned parties’ help if it is to be successful.
Due to the procedural rules of the Senate, it is easy for any senator to block any bill from passing at any time. After coming such a long way with this cause, we cannot risk GINA faltering at this late stage in the process. Therefore, it is immensely important for people to take action on this issue. All it takes is a few minutes to make a big impact. Just follow these simple steps:
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