The Genetic Information Nondiscrimination Act, commonly known as GINA, is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information. It was first introduced into the U.S. Congress in the 1990s at a time when genetic testing and genetics research was taking off at breakneck speed. GINA prevents health insurance companies and employers from requesting that people take genetic tests, prohibits health insurers from using someone's genetic information to refuse insurance or charge higher prices, and also prohibits employers from hiring, firing and making other employment decisions based on their employee's genetic information.
Rep. Louise Slaughter introduces the first version of the bill in the U.S. House of Representatives. More +
The first version of GINA was introduced in 1995, but it was not passed until 2008! In December 1995, during the 104th Congress, Representative Louise Slaughter, a Congresswoman and scientist from New York, introduces a bill called H.R. 2748, "Genetic Information Nondiscrimination in Health Insurance Act. Rep. Slaughter and others supporting the bill realized that as genetic testing was becoming more common, there was an increasing risk that health insurance companies could use a person's genetic test results to decide to cancel their insurance or charge them a higher premium. If there were no laws or regulations preventing this type of discrimination, people might be afraid to take a genetic test that could help diagnose a disease, or they might refuse to participate in genetics research.
H.R. 2748 would prohibit insurance companies from using the genetic information of an individual and their family members to deny or cancel health insurance coverage. It also would prohibit the use of genetic information to set premiums for health insurance. Finally, the bill would ban health insurers from requesting individuals to share their genetic information and would prevent companies from disclosing genetic information without an individual's consent.
It is notable that this first version of the bill does not include protections against employment discrimination based on genetics. More on that later!
Sen. Olympia Snowe introduces a companion bill in the U.S. Senate. More +
Several months after Rep. Slaughter introduces the "Genetic Information Nondiscrimination in Health Insurance Act, Senator Olympia Snowe from Maine introduces the companion bill to H.R. 2748, S. 1694, in the Senate. For a bill to become a law, it must pass both chambers of Congress, the Senate and the House.
Unfortunately, Rep. Slaughter and Sen. Snowe's bills never make it to the full House or full Senate to be voted on, as is typical of many bills that Congress introduces. This is referred to as a bill "dying". When a bill dies, it does not become a law. Bills die for various reasons, some because there is opposition to the bill or just not enough knowledge about or interest in the subject.
This is the first of many attempts made by Rep. Slaughter and Sen. Snowe to pass a bill on genetic nondiscrimination. Rep. Slaughter and Sen. Snowe are well-known for their leadership on genetic nondiscrimination issues, but they were assisted by other members of Congress who introduced similar bills in 1996. These bills include H.R. 2690, "The Genetic Privacy and Nondiscrimination Act of 1996"; S. 1600, "The Genetic Fairness Act of 1996"; and S. 1898, "Genetic Confidentiality and Nondiscrimination Act."" All of these bills also failed to pass.
Read How a Bill Becomes a Law to learn more about what it takes for a bill to pass Congress and be signed into law.
Rep. Slaughter and Sen. Snowe reintroduce their bills in the 105th Congress. More +
In January 1997, the beginning of the 105th Congress, Rep. Slaughter and Sen. Snowe reintroduce their bills (H.R. 306,S. 89) in the House and Senate. Despite their efforts, the bills die a second time in both chambers of Congress in 1998.
In October 1997, the movie "Gattaca" is released. "Gattaca" is a futuristic sci-film that takes place in a time when one's DNA determines everything, from their career to their social status, creating an underclass of people seen as genetically inferior. The movie portrays a bleak picture of genetic discrimination.
Rep. Slaughter and Sen. Snowe reintroduce their bills in the 106th Congress, adding protections against employment discrimination. More +
In 1999, during the 106th Congress, Rep. Slaughter and Sen. Snowe introduce their bills again (H.R. 2457, S. 543). This time, Rep. Slaughter's bill has been renamed “The Genetic Nondiscrimination in Health Insurance and Employment Act of 1999.” Unlike in previous versions, the 1999 bill has a new section that prohibits the use of genetic information to make employment decisions.
The new protections are added to prevent employers from requesting, requiring, collecting and purchasing genetic information from their employees. This is based on the fear that an employer could force employees or jobseekers to take genetic tests and use the results to decide whether or not to employ an individual. Rep. Slaughter's new bill creates even more protections to prevent inappropriate and discriminatory use of genetic information.
Human Genome Project releases a rough draft of the sequence of the human genome. More +
In 2000, during the 106th Congress, the "Genetic Information Nondiscrimination in Health Insurance" bill is still under consideration in both chambers of Congress.
In the same year, on June 26, 2000, the Human Genome Project – an international research effort to produce the first draft sequence of the human genome – reaches a major milestone. The project completes a rough draft of the sequence of the human genome.
Unfortunately, news on the genetic nondiscrimination legislation is not as good. Later in 2000, the bills die a third time in both chambers of Congress.
To celebrate the draft sequence of the human genome, President Bill Clinton gave a speech at a White House briefing in 2000. Former Director of NHGRI and current Director of the National Institutes of Health (NIH), Dr. Francis Collins, also gave a speech at this briefing.
Rep. Slaughter and Sen. Snowe reintroduce their bills in the 107th Congress. More +
In 2001, during the 107th Congress, Rep. Slaughter and Sen. Snowe introduce their bills for a fourth time (H.R. 602, S. 382).
In 2001, researchers working on the Human Genome Project report that there are approximately 30,000 genes in the human genome.
Sen. Snowe introduces the "Genetic Information Nondiscrimination Act" (GINA). More +
In 2002, during the second half of the 107th Congress, Sen. Snowe introduces a second bill titled, "The Genetic Information Nondiscrimination Act" or GINA (S. 1995). This version of Sen. Snowe's bill is the first time her legislation contains protections against employment discrimination. Recall that Rep. Slaughter's bill included the employment nondiscrimination protections in 1999.
Later in 2002, the Senate and House bills die a fourth time.
The Human Genome Project is complete, and the genetic nondiscrimination bill makes progress in the 108th Congress in the Senate. More +
This same year marks a historical moment for genomics. On April 14th, 2003, the International Human Genome Sequencing Consortium announces the completion of the Human Genome Project and the completion of a finalized sequence of about 94% the human genome.
After the end of the Human Genome Project, Rep. Slaughter and Sen. Snowe's bills continue to make their way through the legislative process. Sen. Snowe's bill reaches the full Senate for a vote in October 2003 and passes with 95 votes for the bill and 0 votes against. There is overwhelming support for the bill from Republicans and Democrats in the Senate.
The House bill does not have as much success. It gets stuck in committee and does not make it to the full House for a vote. Because a bill needs to be passed by both chambers of Congress, the legislation dies a fifth time later in 2004.
Republican Rep. Judy Biggert from Illinois introduces the House version of GINA. More +
In 2005, during the 109th Congress, Republican Rep. Judy Biggert from Illinois introduces the House version of GINA (H.R. 1227). Rep. Slaughter is a co-sponsor of this bill. On the Senate side, Sen. Snowe also reintroduces GINA (S. 306).
The Senate bill goes to the floor for a vote and passes the Senate with 98 votes for and 0 votes against. However, the House bill fails to pass again. The bill dies in committee and does not make it to the full House for a vote. The legislation fails to pass a sixth time in 2006.
Rep. Slaughter and Sen. Snowe reintroduce their bills in the 110th Congress. More +
April 25th, the date that GINA passed in the House, is also celebrated as National DNA Day.
The House bill makes great progress. It is reviewed and passed by three different House committees: The Committees on Education and Labor; Ways and Means, and Energy and Commerce. On April 25th, 2007, GINA passes the House with 420 votes for and 3 votes against.
Once passed in the House, the bill is referred to the Senate.
GINA Becomes a Law! More +
On April 24, 2008, the Senate also passes GINA with 95 votes for and 0 votes against. Once GINA passes both the House and Senate, the bill goes to President George W. Bush's desk for a signature.
On May 21st, President Bush signs the bill. GINA finally becomes a law!
Visit our page on Genetic Discrimination to understand how GINA protects you from genetic discrimination.
Last updated: September 16, 2020