Genetic Information Nondiscrimination Act
Encyclopedia
The Genetic Information Nondiscrimination Act of 2008 , is an Act of Congress
in the United States designed to prohibit the improper use of genetic information in health insurance
and employment
. The Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition
to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring
, firing
, job placement, or promotion
decisions. Senator Ted Kennedy
called it the "first major new civil rights
bill of the new century." The Act contains amendments to the Employee Retirement Income Security Act of 1974
and the Internal Revenue Code
of 1986.
In 2008, on April 24 passed the Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1 on May 1; the lone dissenter was Congressman Ron Paul
. President George W. Bush
signed the bill into law on May 21, 2008.
In 2003, GINA was introduced as , by Representative Slaughter, D-NY, and as by Senator Snowe, R-ME.
In 2005, it was proposed as by Representative Biggert, R-IL, and as by Senator Snowe, R-ME.
The Genetic Information Nondiscrimination Act of 2007 was introduced into the United States House of Representatives
as by Representatives Slaughter
, Biggert
, Eshoo
, and Walden
. It passed the House by a 420 - 9 - 3 vote on April 25, 2007.
The same bill was introduced into the United States Senate
as by Senators Olympia Snowe
, Ted Kennedy
, Mike Enzi
, and Christopher Dodd
. On 2008-04-24, the Senate approved the bill 95-0, with five Senators not voting (including presidential candidates McCain
, Clinton, and Obama
). It had been subject of a "hold
" placed by Tom Coburn
, M.D., Republican U.S. Senator
from Oklahoma
.
The bill was then sent back to the House of Representatives and passed 414 - 16 - 1 on May 1, 2008 (the lone dissenter was Congressman Ron Paul). President George W. Bush
signed the bill into law on May 21, 2008. The text of the final approved version of GINA is here.
states that "NHGRI believes that legislation that gives comprehensive protection against all forms of genetic discrimination is necessary to ensure that biomedical research continues to advance. Similarly, it believes that such legislation is necessary so that patients are comfortable availing themselves to genetic diagnostic tests." This point of view thus regards GINA as important for the advancement of personalized medicine
.
The Coalition for Genetic Fairness presents some arguments for genetic nondiscrimination. As of 2007, their argument makes the claim that because all humans have genetic anomalies, this would prevent them from accessing medication and health insurance
. The Coalition also cites the potential for misuse of genetic information.
The GINA legislation has historically received support from the majority of both Democrats and Republicans, as evidenced by the 420-3 vote in 2007 by the House.
, the National Retail Federation
, the Society for Human Resource Management
, the United States Chamber of Commerce
, and other members of the Genetic Information Nondiscrimination in Employment Coalition (GINE) say the proposed legislation is overly broad and are concerned the bills would do little to rectify inconsistent state laws and hence might increase frivolous litigation and/or punitive damages as a result of ambiguous record-keeping and other technical requirements. In addition, they are concerned that it would force employers to offer health plan coverage of all treatments for genetically-related conditions.
While GINA has been cited as a strong step forward, some say that the legislation does not go far enough in enabling personal control over genetic testing results.
Act of Congress
An Act of Congress is a statute enacted by government with a legislature named "Congress," such as the United States Congress or the Congress of the Philippines....
in the United States designed to prohibit the improper use of genetic information in health insurance
Health insurance
Health insurance is insurance against the risk of incurring medical expenses among individuals. By estimating the overall risk of health care expenses among a targeted group, an insurer can develop a routine finance structure, such as a monthly premium or payroll tax, to ensure that money is...
and employment
Employment
Employment is a contract between two parties, one being the employer and the other being the employee. An employee may be defined as:- Employee :...
. The Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition
Genetic predisposition
A genetic predisposition is a genetic affectation which influences the phenotype of an individual organism within a species or population but by definition that phenotype can also be modified by the environmental conditions. In the rest of the population, conditions cannot have that effect...
to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring
Hiring
Hiring may refer to:* Recruitment of personnel * Renting of something...
, firing
Firing
Dismissal is the termination of employment by an employer against the will of the employee. Though such a decision can be made by an employer for a variety of reasons, ranging from an economic downturn to performance-related problems on the part of the employee, being fired has a strong stigma in...
, job placement, or promotion
Promotion (rank)
A promotion is the advancement of an employee's rank or position in an organizational hierarchy system. Promotion may be an employee's reward for good performance i.e. positive appraisal...
decisions. Senator Ted Kennedy
Ted Kennedy
Edward Moore "Ted" Kennedy was a United States Senator from Massachusetts and a member of the Democratic Party. Serving almost 47 years, he was the second most senior member of the Senate when he died and is the fourth-longest-serving senator in United States history...
called it the "first major new civil rights
Civil rights
Civil and political rights are a class of rights that protect individuals' freedom from unwarranted infringement by governments and private organizations, and ensure one's ability to participate in the civil and political life of the state without discrimination or repression.Civil rights include...
bill of the new century." The Act contains amendments to the Employee Retirement Income Security Act of 1974
Employee Retirement Income Security Act
The Employee Retirement Income Security Act of 1974 is an American federal statute that establishes minimum standards for pension plans in private industry and provides for extensive rules on the federal income tax effects of transactions associated with employee benefit plans...
and the Internal Revenue Code
Internal Revenue Code
The Internal Revenue Code is the domestic portion of Federal statutory tax law in the United States, published in various volumes of the United States Statutes at Large, and separately as Title 26 of the United States Code...
of 1986.
In 2008, on April 24 passed the Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1 on May 1; the lone dissenter was Congressman Ron Paul
Ron Paul
Ronald Ernest "Ron" Paul is an American physician, author and United States Congressman who is seeking to be the Republican Party candidate in the 2012 presidential election. Paul represents Texas's 14th congressional district, which covers an area south and southwest of Houston that includes...
. President George W. Bush
George W. Bush
George Walker Bush is an American politician who served as the 43rd President of the United States, from 2001 to 2009. Before that, he was the 46th Governor of Texas, having served from 1995 to 2000....
signed the bill into law on May 21, 2008.
Legislative history
In the 104th Congress (1995-1996) several related bills were introduced.- The Genetic Privacy and Nondiscrimination Act of 1995, : Sen. Mark HatfieldMark HatfieldMark Odom Hatfield was an American politician and educator from the state of Oregon. A Republican, he served for 30 years as a United States Senator from Oregon, and also as chairman of the Senate Appropriations Committee...
and : Rep. Clifford Stearns - The Genetic Fairness Act of 1996, : Sen. Dianne FeinsteinDianne FeinsteinDianne Goldman Berman Feinstein is the senior U.S. Senator from California. A member of the Democratic Party, she has served in the Senate since 1992. She also served as 38th Mayor of San Francisco from 1978 to 1988....
- The Genetic Information Nondiscrimination in Health Insurance Act of 1995, : Rep. Louise Slaughter and : Sen. Olympia SnoweOlympia SnoweOlympia Jean Snowe , née Bouchles, is the senior United States Senator from Maine and a member of the Republican Party. Snowe has become widely known for her ability to influence the outcome of close votes, including whether to end filibusters. She and her fellow Senator from Maine, Susan Collins,...
- Genetic Confidentiality and Nondiscrimination Act of 1996, : Sen. Pete DomeniciPete DomeniciPietro Vichi "Pete" Domenici is an American Republican politician, who served six terms as a United States Senator from New Mexico, from 1973 to 2009, the longest tenure in the state's history....
In 2003, GINA was introduced as , by Representative Slaughter, D-NY, and as by Senator Snowe, R-ME.
In 2005, it was proposed as by Representative Biggert, R-IL, and as by Senator Snowe, R-ME.
The Genetic Information Nondiscrimination Act of 2007 was introduced into the United States House of Representatives
United States House of Representatives
The United States House of Representatives is one of the two Houses of the United States Congress, the bicameral legislature which also includes the Senate.The composition and powers of the House are established in Article One of the Constitution...
as by Representatives Slaughter
Louise McIntosh Slaughter
Louise McIntosh Slaughter is the U.S. Representative for New York's 28th congressional district, serving since 1993, and Chair of the House Rules Committee from 2007 until 2011. She is a member of the Democratic Party. The district is based in Rochester and Buffalo and includes parts of Erie,...
, Biggert
Judy Biggert
Judith Borg "Judy" Biggert is the U.S. Representative for , serving since 1999. She is a member of the Republican Party.-Early life, education and career:...
, Eshoo
Anna Eshoo
Anna Georges Eshoo is the U.S. Representative for , serving since 1993. She is a member of the Democratic Party. The district, which includes part of Silicon Valley, includes the cities of Redwood City, Sunnyvale, Mountain View and Palo Alto...
, and Walden
Greg Walden
Gregory Paul Walden is the U.S. Representative for , serving since 1999. He is a member of the Republican Party.The district covers more than two-thirds of the state . He is the son of Paul E...
. It passed the House by a 420 - 9 - 3 vote on April 25, 2007.
The same bill was introduced into the United States Senate
United States Senate
The United States Senate is the upper house of the bicameral legislature of the United States, and together with the United States House of Representatives comprises the United States Congress. The composition and powers of the Senate are established in Article One of the U.S. Constitution. Each...
as by Senators Olympia Snowe
Olympia Snowe
Olympia Jean Snowe , née Bouchles, is the senior United States Senator from Maine and a member of the Republican Party. Snowe has become widely known for her ability to influence the outcome of close votes, including whether to end filibusters. She and her fellow Senator from Maine, Susan Collins,...
, Ted Kennedy
Ted Kennedy
Edward Moore "Ted" Kennedy was a United States Senator from Massachusetts and a member of the Democratic Party. Serving almost 47 years, he was the second most senior member of the Senate when he died and is the fourth-longest-serving senator in United States history...
, Mike Enzi
Mike Enzi
Michael Bradley "Mike" Enzi is the senior U.S. Senator from Wyoming and a member of the Republican Party.Raised in Thermopolis, Wyoming, Enzi attended George Washington University and the University of Denver. He expanded his father's shoe store business in Gillette before being elected mayor of...
, and Christopher Dodd
Christopher Dodd
Christopher John "Chris" Dodd is an American lawyer, lobbyist, and Democratic Party politician who served as a United States Senator from Connecticut for a thirty-year period ending with the 111th United States Congress....
. On 2008-04-24, the Senate approved the bill 95-0, with five Senators not voting (including presidential candidates McCain
John McCain
John Sidney McCain III is the senior United States Senator from Arizona. He was the Republican nominee for president in the 2008 United States election....
, Clinton, and Obama
Barack Obama
Barack Hussein Obama II is the 44th and current President of the United States. He is the first African American to hold the office. Obama previously served as a United States Senator from Illinois, from January 2005 until he resigned following his victory in the 2008 presidential election.Born in...
). It had been subject of a "hold
Secret hold
In the United States Senate, a hold is a parliamentary procedure permitted by the Standing Rules of the United States Senate which allows one or more Senators to prevent a motion from reaching a vote on the Senate floor....
" placed by Tom Coburn
Tom Coburn
Thomas Allen "Tom" Coburn, M.D. , is an American politician, medical doctor, and Southern Baptist deacon. A member of the Republican Party, he currently serves as the junior U.S. Senator from Oklahoma. In the Senate, he is known as "Dr. No" for his tendency to place holds on and vote against bills...
, M.D., Republican U.S. Senator
United States Senate
The United States Senate is the upper house of the bicameral legislature of the United States, and together with the United States House of Representatives comprises the United States Congress. The composition and powers of the Senate are established in Article One of the U.S. Constitution. Each...
from Oklahoma
Oklahoma
Oklahoma is a state located in the South Central region of the United States of America. With an estimated 3,751,351 residents as of the 2010 census and a land area of 68,667 square miles , Oklahoma is the 28th most populous and 20th-largest state...
.
The bill was then sent back to the House of Representatives and passed 414 - 16 - 1 on May 1, 2008 (the lone dissenter was Congressman Ron Paul). President George W. Bush
George W. Bush
George Walker Bush is an American politician who served as the 43rd President of the United States, from 2001 to 2009. Before that, he was the 46th Governor of Texas, having served from 1995 to 2000....
signed the bill into law on May 21, 2008. The text of the final approved version of GINA is here.
Arguments in favor
Along with an overview of the topic, the NIH National Human Genome Research InstituteNational Human Genome Research Institute
The National Human Genome Research Institute is a division of the National Institutes of Health, located in Bethesda, Maryland.NHGRI began as the National Center for Human Genome Research , which was established in 1989 to carry out the role of the NIH in the International Human Genome Project...
states that "NHGRI believes that legislation that gives comprehensive protection against all forms of genetic discrimination is necessary to ensure that biomedical research continues to advance. Similarly, it believes that such legislation is necessary so that patients are comfortable availing themselves to genetic diagnostic tests." This point of view thus regards GINA as important for the advancement of personalized medicine
Personalized medicine
Personalized medicine is a medical model emphasizing in general the customization of healthcare, with all decisions and practices being tailored to individual patients in whatever ways possible...
.
The Coalition for Genetic Fairness presents some arguments for genetic nondiscrimination. As of 2007, their argument makes the claim that because all humans have genetic anomalies, this would prevent them from accessing medication and health insurance
Health insurance
Health insurance is insurance against the risk of incurring medical expenses among individuals. By estimating the overall risk of health care expenses among a targeted group, an insurer can develop a routine finance structure, such as a monthly premium or payroll tax, to ensure that money is...
. The Coalition also cites the potential for misuse of genetic information.
The GINA legislation has historically received support from the majority of both Democrats and Republicans, as evidenced by the 420-3 vote in 2007 by the House.
Arguments against
The National Association of ManufacturersNational Association of Manufacturers
The National Association of Manufacturers is an advocacy group headquartered in Washington, D.C. with 10 additional offices across the country...
, the National Retail Federation
National Retail Federation
The National Retail Federation is the world's largest retail trade association. Its members include department store, specialty, discount, catalog, Internet, and independent retailers, and chain restaurants and grocery stores. Members also include businesses that provide goods and services to...
, the Society for Human Resource Management
Society for Human Resource Management
The Society for Human Resource Management is a professional human resources association headquartered in Alexandria, Virginia. The largest such association in its field, SHRM promotes the role of HR as a profession and provides education, certification, and networking to its members while lobbying...
, the United States Chamber of Commerce
United States Chamber of Commerce
The United States Chamber of Commerce is an American lobbying group representing the interests of many businesses and trade associations. It is not an agency of the United States government....
, and other members of the Genetic Information Nondiscrimination in Employment Coalition (GINE) say the proposed legislation is overly broad and are concerned the bills would do little to rectify inconsistent state laws and hence might increase frivolous litigation and/or punitive damages as a result of ambiguous record-keeping and other technical requirements. In addition, they are concerned that it would force employers to offer health plan coverage of all treatments for genetically-related conditions.
While GINA has been cited as a strong step forward, some say that the legislation does not go far enough in enabling personal control over genetic testing results.
See also
- Employment Non-Discrimination ActEmployment Non-Discrimination ActThe Employment Non-Discrimination Act is a proposed bill in the United States Congress that would prohibit discrimination against employees on the basis of sexual orientation or gender identity by civilian, nonreligious employers with at least 15 employees.ENDA has been introduced in every...
- Genetic discriminationGenetic discriminationGenetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.The results of a...
- Genism
- Genealogical DNA testGenealogical DNA testA genealogical DNA test examines the nucleotides at specific locations on a person's DNA for genetic genealogy purposes. The test results are not meant to have any informative medical value and do not determine specific genetic diseases or disorders ; they are intended only to give genealogical...
- GattacaGattacaGattaca is a 1997 science fiction film written and directed by Andrew Niccol. It stars Ethan Hawke, Uma Thurman and Jude Law with supporting roles played by Loren Dean, Ernest Borgnine, Gore Vidal and Alan Arkin....
External links
- Full text of GINA in its final form from GovTrack
- National Human Genome Research Institute (NIH)
- Coalition for Genetic Fairness, Genetic Information Nondiscrimination Act of 2007, Genomics and Personalized Medicine Act of 2007
- Genetic Alliance
- Genetic Discrimination Saves Lives - Editorial arguing against the bill.