- Genetic Information Nondiscrimination Act
The Genetic Information Nondiscrimination Act (GINA) is a law in the
United Statesdesigned to prohibit the improper use of genetic informationin health insuranceand 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 predispositionto developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotiondecisions. [http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/SAPonHR493.pdf Statement of Administration policy] , Executive Office of the President, Office of Management and Budget, 27 April 2007] Senator Ted Kennedycalled it the "first major new civil rightsbill of the new century" “" [http://kennedy.senate.gov/newsroom/press_release.cfm?id=4FCF8E86-4706-4E74-B451-36253C5A425D Kennedy in support of genetic information nondiscrimination bill] "”, Abril 24, 2008. Last access: 28/05/2008.]
In 2008, on April 24 USBill|110|H.R.|493 passed the Senate 95 - 0. The bill was then sent back to the House of Representatives and passed 414 - 16 - 1 on May 1st (the lone dissenter was Congressman
Ron Paul). President George W. Bushsigned the bill into law on May 21 2008.cite news | url=http://blog.wired.com/wiredscience/2008/05/the-genetic-inf.html | title=Genetic Discrimination by Insurers, Employers Becomes a Crime | author=Keim, Brandon | work=Wired.com | date= May 21 2008| accessdate=2008-05-28] [ [http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=52305 "Administration News | President Bush Signs Genetic Nondiscrimination Legislation Into Law,"] Kaiser Daily Health Policy Report, Kaiser Family Foundation, May 22, 2008]
History of GINA
104th Congress, 1995-6, several related bills were introduced. [cite journal|title= U.S. Senate Bill 422: the Genetic Confidentiality and Nondiscrimination Act of 1997.|author= Berman JJ, Moore GW, Hutchins GM|journal=Diagn Mol Pathol.|volume=7|pages=192–6|year=1998| pmid=9917128|doi= 10.1097/00019606-199808000-00002] [ cite journal|title= Genetic Nondiscrimination Federal Legislation Archive|url=http://www.genome.gov/11510239]
* The Genetic Privacy and Nondiscrimination Act of 1995, S. 1416: Sen.
Mark Hatfieldand H.R. 2690: Rep. Clifford Stearns
* The Genetic Fairness Act of 1996, S. 1600: Sen.
* The Genetic Information Nondiscrimination in Health Insurance Act of 1995, H.R. 2748: Rep.
Louise Slaughterand S. 1694: Sen. Olympia Snowe
* Genetic Confidentiality and Nondiscrimination Act of 1996, S. 1898: Sen.
In 2003, GINA was introduced as USBill|108|H.R.|1910, by Representative Slaughter, D-NY] , and as USBill|108|S.|1053 by Senator Snowe, R-ME.
In 2005, it was proposed as USBill|109|109|H.R.|1227 by Representative Biggert, R-IL, and as USBill|108|S.|306 by Senator Snowe, R-ME.
The Genetic Information Nondiscrimination Act of 2007 was introduced into the
United States House of Representativesas USBill|110|H.R.|493 by Representatives Slaughter, Biggert, Eshoo, and Walden. It passed the House by a 420 - 9 - 3 vote on 25 April, 2007.
The same bill was introduced into the
United States Senateas USBill|110|S.|358 by Senators Olympia Snowe, Ted Kennedy, Mike Enzi, and Christopher Dodd. [ [http://www.wired.com/medtech/genetics/news/2007/04/gene_act Gene act] , Wired magazine] [http://www.genome.gov/24519851 Genetic Information Nondiscrimination Act of 2007] , National Human Genome Research Institute, Update as of May 2, 2007] USBill|110|S.|358, (accessed July 28 2007)] [http://www.newscientist.com/article.ns?id=dn11787 US to outlaw corporate prejudice based on genes] , 10:00 06 May 2007, New ScientistPrint Edition.] On 2008-04-24, the Senate approved the bill 95-5-0 (presidential candidates McCain, Clinton, & Obama abstained). It had been subject of a "hold" placed by Tom Coburn, M.D., Republican U.S. Senator from Oklahoma. [ [http://www.buffalonews.com/home/story/140542.html buffalonews.com] ]
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. Bushsigned the bill into law on May 21 2008. The text of the [http://www.govtrack.us/congress/billtext.xpd?bill=h110-493&show-changes=0&page-command=print final approved version of GINA is here] .
Arguments in favor of GINA
Along with an [http://www.genome.gov/10002077 overview] of the topic, the
NIH National Human Genome Research Institute[http://www.genome.gov/10002077#3 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. [http://www.masshightech.com/stories/2008/08/18/newscolumn5-GINA--A-big-step-toward-personalized-medicine.html GINA — A big step toward personalized medicine] , by David Resnick, Mass Tech High, August 22, 2008.]
The Coalition for Genetic Fairness [ [http://www.geneticfairness.org 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.
Arguments against GINA
National Association of Manufacturers, the National Retail Federation, the Society for Human Resource Management, and United States Chamber of Commerceand 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. [ [http://www.businessinsurance.com/cgi-bin/industryFocus.pl?articleId=21346&issueDate=2007-03-19 businessinsurance.com] ] [ [http://www.geneforum.org/node/534 geneforum.org] ]
According to "
The Boston Globe", Senator Tom Coburn, had blocked passage of the GINA, objecting to provisions in the bill that allow discrimination based on genetic information from embryos and fetuses. Recently, the embryo loophole was closed, and Tom Coburn reevaluated his opposition to the bill. [http://www.boston.com/news/globe/editorial_opinion/editorials/articles/2007/05/02/discrimination_in_the_genes/ Boston Globe: Tom Coburn's position on the Genetic Discrimination Bill] ] Senator Coburn had holds on 90 other bills in the 110th Congress. However, he voted in favor of an earlier version of GINA which passed unanimously in the Senate in 2005. By April 2008, Senator Coburn lifted his hold on the bill after some provisions of GINA were changed.
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. [http://blog.wired.com/wiredscience/2008/05/genetic-protect.html Genetic Protections Skimp on Privacy, Says Gene Tester] , Wired Science,
May 23 2008]
Employment Non-Discrimination Act
Genealogical DNA test
* [http://www.govtrack.us/congress/billtext.xpd?bill=h110-493&show-changes=0&page-command=print Full text of GINA in it's final form from GovTrack]
* [http://www.genome.gov/10002077 National Human Genome Research Institute (NIH)]
* [http://www.geneticfairness.org/ Coalition for Genetic Fairness]
*, Genetic Information Nondiscrimination Act of 2007
*, Genomics and Personalized Medicine Act of 2007
* [http://www.geneticalliance.org/ Genetic Alliance]
* [http://www.mises.org/story/2808 Genetic Discrimination Saves Lives] - Editorial arguing against the bill.
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