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Current Status of GINA
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May 1, 2008 -- The Genetic Information Nondiscrimination Act passes the House by a vote of 414-1.
April 24, 2008 -- The Genetic Information Nondiscrimination Act passes the Senate by a vote of 95-0.
March 5, 2008 - The Genetic Information Nondiscrimination Act is included in the Paul Wellstone Mental Health and Addiction Equity Act (H.R.1424) which passes the House by a vote of 268-148.
April 25, 2007 – The Genetic Information Nondiscrimination Act passes the House under a suspension of the rules by a vote of 420-3.
March 29, 2007 – The Genetic Information Nondiscrimination Act is placed on the Senate Legislative Calendar.
March 29, 2007 – The Genetic Information Nondiscrimination Act is placed on the House Union Calendar.
March 29, 2007 – The Genetic Information Nondiscrimination Act is reported by the House Committee on Energy and Commerce. (H. Rept. 110-28, Part III)
March 26, 2007 – The Genetic Information Nondiscrimination Act is reported by the House Committee on Ways and Means. (H. Rept. 110-28, Part II)
March 23, 2007 - The Genetic Information Nondiscrimination Act is approved by the House Committee on Energy and Commerce by a unanimous vote.
March 21, 2007 – The Genetic Information Nondiscrimination Act is approved by the House Committee on Ways and Means.
March 14, 2007 – The Genetic Information Nondiscrimination Act is heard in the House Ways and Means Subcommittee on Health.
March 13, 2007 – The Genetic Information Nondiscrimination Act is marked up in the House Energy and Commerce Subcommittee on Health.
March 8, 2007 – The Genetic Information Nondiscrimination Act is heard in the House Energy and Commerce Subcommittee on Health.
March 5, 2007 – The Genetic Information Nondiscrimination Act is reported by the House Committee on Education and Labor. (H. Rept. 110-28, Part I)
February 14, 2007 – The Genetic Information Nondiscrimination Act is approved by the House Committee on Education and Labor by a unanimous vote.
January 31, 2007 – The Genetic Information Nondiscrimination Act is approved by the Senate Committee on Health, Education, Labor, and Pensions by a vote of 19-2.
January 30, 2007 – The Genetic Information Nondiscrimination Act is heard in the House Education and Labor Subcommittee on Health, Employment, Labor, and Pensions.
January 22, 2007 - The Genetic Information Nondiscrimination Act is introduced in the Senate by a bipartisan team - Sen. Snowe, Sen. Kennedy, Sen. Enzi, and Sen. Dodd. Senator Snowe’s Introductory Remarks. Senator Kennedy’s Introductory Remarks.
January 16, 2007 - The Genetic Information Nondiscrimination Act is introduced in the House of Representatives by a bipartisan team— Rep. Slaughter, Rep. Biggert, Rep. Eshoo, and Rep. Walden. Representative Slaughter’s Introductory Remarks.
Current lists of GINA’s House and Senate cosponsors are available online.
History of GINA
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Legislation on genetic nondiscrimination was first introduced in the House of Representatives 1995 by Rep. Louise Slaughter (D-NY). 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 that, the 104th Congress. Similar legislation was introduced in both chambers of Congress in the 105th and 106th Congresses. None of these bills made it to the President’s desk.
The Genetic Information Nondiscrimination Act (GINA) was first introduced in 2002 during the 107th Congress by Sen. Olympia Snowe (R-ME). The bill addressed discrimination in both health insurance and employment decisions. The bill did not pass.
Similar legislation was introduced in the 108th Congress. In the House of Representatives, the bill (H.R.1910) was introduced by Rep. Louise Slaughter (D-NY) and gained 242 cosponsors. In the Senate, the bill (S.1053) was introduced by Sen. Olympia Snowe (R-ME) and gained 23 cosponsors. The Senate bill passed 95-0. The House bill did not.
In the 109th Congress, the bill (H.R.1227) was introduced in the House of Representatives by Rep. Judy Biggert (R-IL). It gained 244 cosponsors, but did not pass. In the Senate, Sen. Olympia Snowe (R-ME) introduced the bill (S.306) and it passed 98-0.
Why We Need GINA
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1) We are all affected.
- Each of us carries a handful of genetic anomalies. Some of those might cause us to be affected by genetic conditions. Some of those will not affect our health, but may affect the health of our children.
- Currently, 1200 genetic tests exist which can diagnose thousands of health conditions. This number has grown from just 100 genetic tests 10 years ago. With more genetic tests in the pipeline, increased genetic information will become accessible through testing.
- Genetic information is invaluable. It provides a key to our makeup that we can use to proactively manage our health. However, this same information may also be misused and put us at risk for genetic discrimination. Cases of genetic discrimination have already been documented in the United States, and without laws to address the issue adequately, such cases will likely continue.
- We need legal protection so that all Americans are free to put their health concerns first without fear of discrimination.
2) Current laws do not adequately protect us from genetic discrimination.
- The current patchwork of state laws leaves individuals vulnerable. A few states have strict protections against genetic discrimination, but most states have little to no protection. This leaves individuals with little knowledge about how much their genetic information is protected from state to state. In addition, companies who deal in any kind of health information are left with no national framework to guide how they handle genetic test results and genetic information privacy.
- Genetic information is not properly covered under HIPAA privacy guidelines. Current HIPAA guidelines do not prohibit insurers from requiring genetic testing or from denying coverage based on genetic information. Genetic information is becoming increasingly more ingrained in medicine, and as such, will serve to complicate privacy law if steps are not taken now to close gaps in policy.
3) We all lose under current guidelines.
- Fear of misuse of genetic information is preventing people from getting genetic tests done. Refusal to utilize effective genetic tests hurts individuals, researchers, doctors, and companies. Individuals’ lack of testing denies them important medical information that they could otherwise use to proactively manage their health. The information garnered by genetic tests also helps doctors to prescribe treatments and lifestyle changes with increased success. The same information can be used by researchers to effectively create targeted drugs and develop treatments. In addition, companies developing these important tests cannot recoup research costs, and therefore, are unable to invest in further development.
- Fear of discrimination is also causing a large number of people to opt out of clinical trials. Fewer participants in clinical trials leads to slower development of treatments and beneficial drugs. With the exponential increase in genetic tests being developed, lack of participation in trials will most likely prove to be a severe limiting factor. In addition, clinical trials provide patients in late stages of disease with access to breakthrough treatments that would normally be unavailable.
4) We can all benefit from protections offered in the Genetic Information Nondiscrimination Act.
- The Genetic Information Nondiscrimination Act protects all Americans by:
• Prohibiting insurers in both the group and individual health insurance market from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to determine eligibility or establish premiums.
• Prohibiting employers, including employment agencies and labor organizations, from 1) “requesting or requiring” genetic testing of an individual or his family or 2) using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.
- Americans support the Genetic Information Nondiscrimination Act. An overwhelming majority of Americans (85%) believe that if someone has a genetic test, their employer should not have the right to know the results. Republicans, Democrats, and individuals from all racial and ethnic groups, religions, and income and education levels share this opinion. [Survey conducted in 2002 by the Genetics and Public Policy Center, Johns Hopkins University.]
Further Reading on GINA
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Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People
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Working to pass Genetic Nondiscrimination Legislation 
