The Genetic Information Nondiscrimination Act of 2008 (, GINA ), is an

Act of Congress An Act of Congress is a statute enacted by the United States Congress. Acts may apply only to individual entities (called private laws), or to the general public ( public laws). For a bill to become an act, the text must pass through both house ...

in the United States designed to prohibit some types of

genetic discrimination Genetic discrimination occurs when people treat others (or are treated) differently because they have or are perceived to have a gene mutation(s) that causes or increases the risk of an inherited disorder. It may also refer to any and all discr ...

. The act bars the use of

genetic information A nucleic acid sequence is a succession of bases signified by a series of a set of five different letters that indicate the order of nucleotides forming alleles within a DNA (using GACT) or RNA (GACU) molecule. By convention, sequences are u ...

health insurance Health insurance or medical insurance (also known as medical aid in South Africa) is a type of insurance that covers the whole or a part of the risk of a person incurring medical expenses. As with other types of insurance, risk is shared among m ...

and

employment Employment is a relationship between two parties regulating the provision of paid labour services. Usually based on a contract, one party, the employer, which might be a corporation, a not-for-profit organization, a co-operative, or any o ...

: it 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 A genetic predisposition is a genetic characteristic which influences the possible phenotypic development of an individual organism within a species or population under the influence of environmental conditions. In medicine, genetic susceptibili ...

to developing a disease in the future, and it bars employers from using individuals' genetic information when making hiring, firing, job placement, or

promotion Promotion may refer to: Marketing * Promotion (marketing), one of the four marketing mix elements, comprising any type of marketing communication used to inform or persuade target audiences of the relative merits of a product, service, brand or i ...

decisions.Statement of Administration policy
Executive Office of the President, Office of Management and Budget, April 27, 2007 Senator

Ted Kennedy Edward Moore Kennedy (February 22, 1932 – August 25, 2009) was an American lawyer and politician who served as a United States senator from Massachusetts for almost 47 years, from 1962 until his death in 2009. A member of the Democratic ...

called it the "first major new

civil rights Civil and political rights are a class of rights that protect individuals' freedom from infringement by governments, social organizations, and private individuals. They ensure one's entitlement to participate in the civil and political life ...

bill of the new century." The Act contains amendments to the

Employee Retirement Income Security Act of 1974 The Employee Retirement Income Security Act of 1974 (ERISA) (, codified in part at ) is a U.S. federal tax and labor law that establishes minimum standards for pension plans in private industry. It contains rules on the federal income tax e ...

and the

Internal Revenue Code The Internal Revenue Code (IRC), formally the Internal Revenue Code of 1986, 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 2 ...

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 Ronald Ernest Paul (born August 20, 1935) is an American author, activist, physician and retired politician who served as the U.S. representative for Texas's 22nd congressional district from 1976 to 1977 and again from 1979 to 1985, as we ...

. President George W. Bush signed the bill into law on May 21, 2008.

Legislative history

Preliminary bills

In the

104th Congress The 104th United States Congress was a meeting of the legislative branch of the United States federal government, composed of the United States Senate and the United States House of Representatives. It met in Washington, D.C. from January 3, 199 ...

(1995–1996) several related bills were introduced. * The Genetic Privacy and Nondiscrimination Act of 1996, : Sen.

Mark Hatfield Mark Odom Hatfield (July 12, 1922 – August 7, 2011) 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 Approp ...

and : Rep. Clifford Stearns * The Genetic Fairness Act of 1996, : Sen.

Dianne Feinstein Dianne Goldman Berman Feinstein ( ; born Dianne Emiel Goldman; June 22, 1933) is an American politician who serves as the senior United States senator from California, a seat she has held since 1992. A member of the Democratic Party, she wa ...

* The Genetic Information Nondiscrimination in Health Insurance Act of 1995, : Rep. Louise Slaughter and : Sen.

Olympia Snowe Olympia Jean Snowe (; born February 21, 1947) is an American businesswoman and politician who was a United States Senator from Maine from 1995 to 2013. Snowe, a member of the Republican Party, became known for her ability to influence the outco ...

* Genetic Confidentiality and Nondiscrimination Act of 1996, : Sen. Pete Domenici In 1997, the Coalition for Genetic Fairness (CGF) was formed by several patient and civil rights groups to spearhead genetic nondiscrimination legislation on Capitol Hill. The CGF became the primary non-governmental driver of Federal genetic non-discrimination legislation. In 2003, GINA was introduced as , by Louise 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 The United States House of Representatives, often referred to as the House of Representatives, the U.S. House, or simply the House, is the lower chamber of the United States Congress, with the Senate being the upper chamber. Together they ...

as by Representatives Slaughter, Biggert, Eshoo, and

Walden ''Walden'' (; first published in 1854 as ''Walden; or, Life in the Woods'') is a book by American transcendentalist writer Henry David Thoreau. The text is a reflection upon the author's simple living in natural surroundings. The work is part ...

. It passed the House by a 420 - 9 - 3 vote on April 25, 2007.

Final legislation

The same bill was introduced into the

United States Senate The United States Senate is the upper chamber of the United States Congress, with the House of Representatives being the lower chamber. Together they compose the national bicameral legislature of the United States. The composition and po ...

as by Senators

, Mike Enzi, and

Christopher Dodd Christopher John Dodd (born May 27, 1944) is an American lobbyist, lawyer, and Democratic Party politician who served as a United States senator from Connecticut from 1981 to 2011. Dodd is the longest-serving senator in Connecticut's histor ...

.Genetic Information Nondiscrimination Act of 2007

National Human Genome Research Institute The National Human Genome Research Institute (NHGRI) is an institute of the National Institutes of Health, located in Bethesda, Maryland. NHGRI began as the Office of Human Genome Research in The Office of the Director in 1988. This Office transi ...

, Update as of May 2, 2007, (accessed July 28, 2007)US to outlaw corporate prejudice based on genes
10:00 06 May 2007,

New Scientist ''New Scientist'' is a magazine covering all aspects of science and technology. Based in London, it publishes weekly English-language editions in the United Kingdom, the United States and Australia. An editorially separate organisation publish ...

Print Edition. On April 24, 2008, the Senate approved the bill 95-0, with five senators not voting (including presidential candidates McCain, Clinton, and

Obama Barack Hussein Obama II ( ; born August 4, 1961) is an American politician who served as the 44th president of the United States from 2009 to 2017. A member of the Democratic Party, Obama was the first African-American president of the ...

). It had been subject of a " Secret hold" placed by Tom Coburn, 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 th
final approved version of GINA is here

Regulation

On May 17, 2016, the

Equal Employment Opportunity Commission The U.S. Equal Employment Opportunity Commission (EEOC) is a federal agency that was established via the Civil Rights Act of 1964 to administer and enforce civil rights laws against workplace discrimination. The EEOC investigates discrimination ...

(EEOC) amended various GINA regulations providing further clarification on acceptable workplace wellness programs. The new guidelines are effective on July 16, 2016. The new amendments require that (1) employee wellness programs are voluntary; (2) employers cannot deny health care coverage for non participation, or (3) take adverse employment actions against or coerce employees who do not participate in wellness programs. Additionally, the new GINA regulations cover spousal participation in wellness programs and employers may not ask employees or covered dependents to agree to permit the sale of their genetic information in exchange for participation in wellness plans.

Debate during consideration

Arguments for

Along with a
overview
of the topic, the NIH

br>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, also referred to as precision medicine, is a medical model that separates people into different groups—with medical decisions, practices, interventions and/or products being tailored to the individual patient based on the ...

.GINA — A big step toward personalized medicine
, by David Resnick, Mass Tech High, August 22, 2008. 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

. 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 of Representatives.

Arguments against

The

National Association of Manufacturers The National Association of Manufacturers (NAM) is an advocacy group headquartered in Washington, D.C., with additional offices across the United States. It is the nation's largest manufacturing industrial trade association, representing 14,000 s ...

, the

National Retail Federation The National Retail Federation (NRF) is the world's largest retail trade association. Its members include department stores, specialty, discount, catalog, Internet, and independent retailers, chain restaurants, grocery stores, and multi-level ma ...

, the

Society for Human Resource Management The Society for Human Resource Management (SHRM) is a professional human resources membership association headquartered in Alexandria, Virginia. SHRM promotes the role of HR as a profession and provides education, certification, and networking to ...

, the

United States Chamber of Commerce The United States Chamber of Commerce (USCC) is the largest lobbying group in the United States, representing over three million businesses and organizations. The group was founded in April 1912 out of local chambers of commerce at the urgin ...

, 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. Insurance industry representatives argued that they may need genetic information. Without it, more high-risk people would buy insurance, causing rate unfairness.

Limitations and calls for extension

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.Genetic Protections Skimp on Privacy, Says Gene Tester
Wired Science, May 23, 2008 The law does not cover life, disability, or long-term care insurance, which may cause some reluctance to get tested. Some legal scholars have called for the addition of a "disparate impact" theory of action to strengthen GINA as a law.

2017 proposal to reduce protection

On 8 March 2017 during the

115th Congress The 115th United States Congress was a meeting of the legislative branch of the United States of America federal government, composed of the Senate and the House of Representatives. It met in Washington, D.C., from January 3, 2017, to January ...

(2017-2018), HR 1313 - ''Preserving Employee Wellness Programs Act'' - was introduced by Committee on Education and the Workforce Chairwoman

Virginia Foxx Virginia Ann Foxx ( Palmieri;Foxx, Virginia Ann
. ''Biographical Directory of ...

and cosponsored by

Subcommittee on Health, Employment, Labor, and Pensions The House Subcommittee on Health, Employment, Labor, and Pensions is a standing subcommittee within the United States House Committee on Education and Labor. It was formerly known as the Subcommittee on Employer-Employee Relations. Jurisdiction Fro ...

Chairman Tim Walberg, Elise Stefanik, Paul Mitchell,

Luke Messer Allen Lucas Messer (born February 27, 1969) is an American politician and lobbyist who represented Indiana's 6th congressional district in the United States House of Representatives from 2013 to 2019. He is a member of the Republican Party. Born ...

and

Tom Garrett Thomas William Garrett (26 July 1858 – 6 August 1943) was an early Australian Test cricketer and, later, a distinguished public servant. Early life Tom Garrett was the second son of a newspaper proprietor and politician who bore the same n ...

. Employers would have been able to demand workers' genetic test results if the bill were to have been enacted. The bill was not enacted, although it was Committed to the Committee of the Whole House on the State of the Union and ordered to be printed on 11 December 2017.

References

External links

Full text of GINA in its final form from GovTrackGenetic Discrimination , National Human Genome Research Institute (NIH)Timeline of the Genetic Information Nondiscrimination Act (GINA)

Coalition for Genetic Fairness
* , Genetic Information Nondiscrimination Act of 2007 * , Genomics and Personalized Medicine Act of 2007
Your GINA resourceGenetic AllianceGenetic Discrimination Saves Lives
- Editorial arguing against the bill. {{Authority control Medical genetics United States federal health legislation Medical privacy legislation Acts of the 110th United States Congress

Legislative history

Preliminary bills

Final legislation

Regulation

Debate during consideration

Arguments for

Arguments against

Limitations and calls for extension

2017 proposal to reduce protection

See also

References

External links