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Executive Committee

Sharon F. Terry, Chair,
Genetic Alliance

Cynthia Pellegrini,
American Academy of Pediatrics

Derek Scholes,
American Heart Association

Joann Boughman,
American Society of Human Genetics

Timothy Leshan,
Brown University


Marla Gilson,
Hadassah

Barbara Harrison,
National Society of Genetic Counselors

Jeremy Gruber,
Council for Responsible Genetics



 

The History of GINA
Why GINA?

Genetics continues to transform our understanding of human health. Family health history helps us to understand the hereditary basis of disease. Genetic research has contributed to our knowledge of the occurrence and progression of disease, and can measure the effectiveness of medications and therapies. This research has resulted in advances in genetic technologies and services. A sign of these advances is the number of genetic tests. Since 1995, the number of genetic tests increased from a handful to over one thousand. In the past, genetic tests were available for rare diseases, but now genetic and genomic tests are developed for common diseases.

The benefits of integrating genetic information into health management are tremendous. It enables individuals and families to make proactive and informed decisions. Knowledge about one's genes can be invaluable to the delivery of healthcare services. However, that knowledge is also susceptible to misuse. Because no one is exempt from this harm--each of us carries a number of mutated genes--genetic discrimination is a potential concern for everyone.

Federal nondiscrimination legislation was proposed as a solution to both actual cases of genetic discrimination and to prevent fears of genetic discrimination, which reduced participation in testing and clinical trials. On the state level, legislatures responded to concerns by providing various levels of protection. Unfortunately, the patchwork of state laws left some individuals vulnerable. Individuals realized the privacy protections afforded by HIPAA did not prohibit insurers in the individual market from requiring genetic testing or from denying coverage based on genetic information.

The Genetic Information Nondiscrimination Act (GINA) provides a federal floor for protections. The legislation comes at a time when healthcare costs are rising, and individuals continue to express concerns that health insurers and employers, looking for ways to save money, will use genetic information as a tool to cut costs. When GINA takes effect in November 2009, all Americans will be free to use genetic information in health management.

The Long Road to Passage

Genetic nondiscrimination legislation was first introduced in the House of Representatives in 1995 by Representative Louise Slaughter (D-NY), during the 104th Congress. In 1996, Sen. Olympia Snowe (R-ME) introduced similar legislation in the Senate. Both bills specifically addressed discrimination in health insurance. Neither bill passed in the 104th Congress. Similar legislation was introduced in both chambers of Congress (the US Senate and the US House of Representatives) in the 105th and 106th Congresses, but did not pass either chamber.

In 1997, a number of organizations, including Alpha-1 Association, Genetic Alliance, Hadassah, National Partnership for Women & Families, National Society of Genetic Counselors, and the National Workrights Institute, founded the Coalition for Genetic Fairness (CGF). CGF's objective was to educate the public and Congress about genetic discrimination, so that introduced genetic nondiscrimination legislation could be seriously considered. In 2005, the CGF expanded to include industry and employers. Since its founding through the day genetic information nondiscrimination legislation passed, the Coalition united hundreds of organizations and thousands of individuals as one voice against genetic discrimination.

In the 107th Congress, Rep. Slaughter introduced the Genetic Nondiscrimination in Health Insurance and Employment Act in the House of Representatives in 2001, and in 2002, Sen. Snowe introduced the Genetic Information Nondiscrimination Act (GINA) in the Senate. Both bills addressed discrimination in health insurance and employment decisions. Neither bill passed.

Similar legislation was introduced once again in the 108th Congress. In the House of Representatives, the bill (H.R. 1910) was introduced by Rep. Slaughter and gained 242 cosponsors. In the Senate, the bill (S. 1053) was introduced by Sen. Snowe and gained 23 cosponsors. The Senate bill passed 95-0, however the House bill did not pass.

In the 109th Congress, Rep. Judy Biggert (R-IL) introduced the bill (H.R.1227) in the House of Representatives. It gained 244 cosponsors, but again did not pass. In the Senate, Sen. Snowe introduced the bill (S.306), which gained 23 cosponsors. The bill passed in the Senate 98-0.

GINA Victory - Finally!

GINA saw a great deal of action in the 110th Congress. Introduced immediately in the House and the Senate, the bill began to move. The House brought the Genetic Information Nondiscrimination Act (H.R. 493) through the three committees of jurisdiction (Education and Labor, Energy and Commerce, and Ways and Means) and succeeded in passing it in all subcommittees and committees. It was a momentous occasion for the Congress and the CGF when, on DNA Day (April 25, 2007), GINA finally passed the House, 414 - 1. It took almost another year to have the bill (S. 358) pass in the Senate, 95-0, on April 24, 2008.

On May 21, 2008, President George W. Bush signed GINA into law (Public Law 110-233). It was an historic occasion, and Francis Collins, Director of the National Human Genome Research Institute (NHGRI), Louise Slaughter (D-NY), long time champion of the bill, Judy Biggert (R-IL), Republican catalyst for the action in the last several years, were present at the signing. The CGF honored them and others in a victory party on Friday, July 11, 2008. Dr. Francis Collins led the guests in a celebratory song, "G-I-N-A", which he wrote for the occasion.

To view videos of the GINA Victory Celebration, visit the Genetic Alliance YouTube Channel.


Last Updated: November 10, 2008


Please contact Andria Cornell at (202) 966-5557 x207 or acornell@geneticalliance.org with any questions about the Coalition for Genetic Fairness and its activities.

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