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 Public and private bills, private laws), or to the general public (Public and private bills, public laws). For a Bill (law) ...

in the United States designed to prohibit some types of genetic discrimination. The act bars the use of

genetic information A nucleic acid sequence is a succession of Nucleobase, bases within the nucleotides forming alleles within a DNA (using GACT) or RNA (GACU) molecule. This succession is denoted by a series of a set of five different letters that indicate the orde ...

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 ma ...

and

employment Employment is a relationship between two party (law), parties Regulation, regulating the provision of paid Labour (human activity), labour services. Usually based on a employment contract, contract, one party, the employer, which might be a cor ...

: 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 to developing a disease in the future, and it bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions.Statement of Administration policy
Executive Office of the President, Office of Management and Budget, April 27, 2007 Senator Ted Kennedy called it the "first major new

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

bill of the new century." The Act contains amendments to the Employee Retirement Income Security Act of 1974 and the

Internal Revenue Code The Internal Revenue Code of 1986 (IRC), is the domestic portion of federal statutory tax law in the United States. It is codified in statute as Title 26 of the United States Code. The IRC is organized topically into subtitles and sections, co ...

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 George Walker Bush (born July 6, 1946) is an American politician and businessman who was the 43rd president of the United States from 2001 to 2009. A member of the Bush family and the Republican Party (United States), Republican Party, he i ...

signed the bill into law on May 21, 2008.

Legislative history

Preliminary bills

In the 104th Congress (1995–1996) several related bills were introduced. * The Genetic Privacy and Nondiscrimination Act of 1996, : Sen. Mark Hatfield and : Rep. Clifford Stearns * The Genetic Fairness Act of 1996, : Sen. Dianne Feinstein * The Genetic Information Nondiscrimination in Health Insurance Act of 1995, : Rep. Louise Slaughter and : Sen. Olympia Snowe * 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 is a chamber of the Bicameralism, bicameral United States Congress; it is the lower house, with the U.S. Senate being the upper house. Together, the House and Senate have the authority under Artic ...

as by Representatives Slaughter, Biggert, Eshoo, and Walden. It passed the House by a 420 - 9 - 3 vote on April 25, 2007. It was led by Genetic Alliance.

Final legislation

The same bill was introduced into the

United States Senate The United States Senate is a chamber of the Bicameralism, bicameral United States Congress; it is the upper house, with the United States House of Representatives, U.S. House of Representatives being the lower house. Together, the Senate and ...

as by Senators Olympia Snowe, Ted Kennedy, Mike Enzi, and Christopher Dodd.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 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). 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

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 (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.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 Retail Federation, 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 ...

, 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. 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 (2017-2018), HR 1313 - ''Preserving Employee Wellness Programs Act'' - was introduced by Committee on Education and the Workforce Chairwoman Virginia Foxx and cosponsored by Subcommittee on Health, Employment, Labor, and Pensions Chairman Tim Walberg,

Elise Stefanik Elise Marie Stefanik ( ; born July 2, 1984) is an American politician serving as the U.S. representative for . As chair of the House Republican Conference from 2021 to 2025, she was the fourth-ranking House Republican. Stefanik's district covers ...

, Paul Mitchell, Luke Messer and Tom Garrett. Employers would have been able to demand workers' genetic test results if the bill were to have been enacted. The bill was reported out of committee to the full House for debate, but it was not passed before the congressional term ended.

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 United States federal insurance legislation