Genetic Information Nondiscrimination Act
The Genetic Information Nondiscrimination Act of 2008 (Pub. L. 110–233 (text) (PDF), 122 Stat. 881, enacted May 21, 2008, GINA /ˈdʒiː.nə/ JEE-nə), is an Act of Congress in the United States designed to prohibit some types of genetic discrimination. The act bars the use of genetic information in health insurance and employment: 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.[1] Senator Ted Kennedy called it the "first major new civil rights bill of the new century."[2] The Act contains amendments to the Employee Retirement Income Security Act of 1974[3] and the Internal Revenue Code of 1986.[4]
Long title
An act to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.
GINA
May 21, 2008
122 Stat. 881
29 U.S.C. § 216(e)
29 U.S.C. § 1132
29 U.S.C. § 1182
29 U.S.C. § 1182(b)
29 U.S.C. § 1191b(d)
42 U.S.C. § 300gg-1
42 U.S.C. § 300gg-1(b)
42 U.S.C. § 300gg-21(b)(2)
42 U.S.C. § 300gg-22(b)
42 U.S.C. § 300gg-51 et seq.
42 U.S.C. § 300gg-61(b)
42 U.S.C. § 300gg-91
42 U.S.C. § 300gg-91(d)
42 U.S.C. § 1395ss
42 U.S.C. § 1395ss(o)
42 U.S.C. § 1395ss(s)(2)
Legislative history[edit]
Preliminary bills[edit]
In the 104th Congress (1995–1996) several related bills were introduced.[8]
Regulation[edit]
On May 17, 2016, the Equal Employment Opportunity Commission (EEOC) amended various GINA regulations providing further clarification on acceptable workplace wellness programs.[14] The new guidelines are effective on July 16, 2016.[15] 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.[16]
Debate during consideration[edit]
Arguments for[edit]
Along with an overview of the topic, the NIH National Human Genome Research Institute 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.[17]
The Coalition for Genetic Fairness[18] 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 of Representatives.
Arguments against[edit]
The National Association of Manufacturers, 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.[19]
Insurance industry representatives argued that they may need genetic information. Without it, more high-risk people would buy insurance, causing rate unfairness.[20]
Limitations and calls for extension[edit]
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.[21] The law does not cover life, disability, or long-term care insurance, which may cause some reluctance to get tested.[20][22]
Some legal scholars have called for the addition of a "disparate impact" theory of action to strengthen GINA as a law.[23]
2017 proposal to reduce protection[edit]
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, Paul Mitchell, Luke Messer and Tom Garrett.[24] Employers would have been able to demand workers' genetic test results if the bill were to have been enacted.[25][26][27] The bill was reported out of committee to the full House for debate, but it was not passed before the congressional term ended.[24]