Genetics & Public Policy Center
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HISTORY

The first federal legislation expressly addressing genetic discrimination, The Genetic Information Nondiscrimination in Health Insurance Act of 1995, was introduced in the 104th Congress (1995-1996) by Rep. Louise Slaughter in the House of Representatives and Sen. Olympia Snowe in the Senate. Several additional bills related to genetic discrimination were introduced during the 104th Congress:

  • The Genetic Privacy and Nondiscrimination Act of 1995, S. 1416, introduced by Sen. Mark Hatfield and H.R. 2690, introduced by Rep. Clifford Stearns
  • The Genetic Fairness Act of 1996, S. 1600, introduced by Sen. Dianne Feinstein
  • The Genetic Confidentiality and Nondiscrimination Act of 1996, S. 1898, introduced by Sen. Pete Domenici

Although comprehensive genetic discrimination legislation did not pass during the 104th Congress, the Health Insurance Portability and Accountability Act was enacted and became law in 1996, providing some protections from genetic discrimination for people enrolled in group health insurance plans.

Reflecting growing interest and support for federal legislation, a variety of bills related to genetic discrimination were introduced in the 105th (1997-1998) and 106th (1999-2000) Congressional sessions:

  • January 7, 1997: Rep. Clifford Stearns introduced H.R. 341, the Genetic Privacy and Nondiscrimination Act of 1997
  • January 7, 1997: Rep. Gerald Solomon introduced H.R. 328, Genetic Information Health Insurance Discrimination Act of 1997
  • January 7, 1997: Rep. Louise Slaughter introduced H.R. 306, the Genetic Information Nondiscrimination in Health Insurance Act of 1997
  • January 21, 1997: Sen. Olympia Snowe introduced S. 89, the Genetic Information Nondiscrimination in Health Insurance Act of 1997, a companion bill to H.R. 306
  • March 11, 1997: Sen. Pete Domenici introduced S. 422, the Genetic Confidentiality and Nondiscrimination Act of 1997
  • July 17, 1997: Rep. Clifford Stearns introduced H.R. 2198, the Genetic Privacy and Nondiscrimination Act of 1997
  • July 22, 1997: Rep. Joseph Kennedy introduced H.R. 2216, the Genetic Protection in Insurance Coverage Act
  • March 4, 1999: Sen. Olympia Snowe introduced S. 543, the Genetic Information Nondiscrimination in Health Insurance Act of 1999
  • July 1, 1999: Rep. Louise Slaughter introduced H.R. 2457, the Genetic Nondiscrimination in Health Insurance and Employment Act of 1999

On February 8, 2000, President Bill Clinton issued Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information. This executive order, which remains in effect today, placed stringent limits on the ability of the federal government to collect, use, or disclose genetic information of federal employees.

The Genetic Information Nondiscrimination Act (GINA), a new and comprehensive version of federal genetic discrimination legislation, first was introduced during the 107th Congress (2001-2002) by Rep. Slaughter and Sen. Snowe. The bill addressed discrimination in both health insurance and employment decisions. GINA attracted bipartisan support from the many members of Congress who had sponsored and supported numerous earlier versions of the legislation.

GINA was reintroduced in the 108th Congress (2003-2004). In 2003 GINA passed the Senate 95-0. However, the House of Representatives did not consider the bill. GINA was reintroduced again in the 109th Congress (2005-2006). On February 17, 2005, GINA passed the Senate by 98-0. However, the House of Representatives once again failed to consider the bill.

At the beginning of the 110th Congressional session (2007-2008), Democrats took control of the House leadership (and thus the legislative agenda) for the first time since the end of the 103rd Congress. GINA was reintroduced as H.R. 493 and S. 358, respectively, in the House and Senate. On April 25, 2007, it passed the House of Representatives 420-3. Almost exactly a year later, on April 24, 2008, after being the subject of a “hold” by Sen. Tom Coburn, GINA finally passed the Senate 95-0. The bill then was sent back to the House of Representatives and passed 414-1 on May 1, 2008 (the lone dissenter was Rep. Ron Paul).

On May 21, 2008, President George W. Bush signed H.R. 493, the Genetic Information Nondiscrimination Act of 2008, into law. GINA is now Public Law No: 110-233. Federal regulations will be issued and all aspects of GINA will be in effect by November 21, 2009.