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US Senate approves genetic anti-discrimination legislation

28 April 2008
Appeared in BioNews 455

The US Senate has unanimously (95-0) approved legislation to prohibit genetic discrimination by employers, insurers and unions. Following thirteen years of effort, the Genetic Information Nondiscrimination Act ('GINA') is finally expected early next week, to breeze through approval in the House of Representatives, which supported the original version last year, onto President Bush who has promised to sign the bill into law. Democrat Senator Edward Kennedy sponsored the bill, together with Republican Senators Olympia Snowe and Mike Enzi, because 'discrimination based on a person's genetic identity is just as unacceptable as discrimination on the basis of race or religion'. He describes GINA as 'the first civil rights bill of the new century'.

GINA will confine access to an individual's genetic information within a patient-doctor relationship and explicitly prevents insurers and employers from requesting or requiring predictive genetic testing. An employer will not be able to hire, fire, promote or compensate an employee on the basis of personal genetic information indicating a biologically increased risk of disease feared to hinder future work productivity or require costly benefit provision. Health insurers likewise will not be able to determine coverage eligibility, premium rates or increases based upon genetic susceptibility to disease.

House Representative Democrat, Louise Slaughter, who introduced the first measure in 1995, believes that genetic testing could 'save billions of dollars in health care costs'. However, the over 1,100 tests available are 'useless', explained Senator Snowe, if fear of discrimination stops people from participating in medical research or seeking testing, which could provide an opportunity to avoid medical conditions for which they might be at increased genetic risk through monitoring and taking preventative steps once identified. Surveys have shown that the American public share widespread concern that their personal genetic information will be used in harmful ways against them.

Both Congressional houses have individually passed versions of GINA without ultimate passage through both houses. The Senate unanimously passed previous versions in 2003 and 2005, but it then never made it out of House committee. This time the House approved the GINA bill, H.R. 493, by a landslide 420-3 margin on 25 April 2007, but the Senate vote was delayed eight months by Republican Senator Tom Coburn, an obstetrician who voiced concern that the wording would open the floodgates to frivolous litigation. In March, he and ten Senators signed a letter to the White House requesting amendments. Earlier this week, the lawmakers agreed to create a 'firewall' between employment and insurance sector regulation, tweak language and insert clarification that insurers can continue to base decisions on an existing/expressed disease.

The US will join nations including France and Austria with what Snowe describes as 'unique and groundbreaking' law because for the first time legislation will 'prevent discrimination before it has taken hold'.

Banning genetic discrimination
Nature News |  25 April 2008
Genetic Information Nondiscrimination Act Passes U.S. Senate
ScienceDaily |  24 April 2008
US blocks genetic discrimination
BBC News Online |  25 April 2008
30 November 2009 - by Dr Jess Buxton 
After almost ten happy years as a BioNews editor, this issue will be my last. I started working for Progress Educational Trust (PET) in February 2000, nearly a year after BioNews was launched by Juliet Tizzard, the first PET director. In my first week, I remember thinking how useful a news digest of developments in the fast-moving areas of genetics and assisted reproduction was - and what a fascinating job it was going to be. But at the same time, I privately wondered whether there would be q...
2 June 2008 - by MacKenna Roberts 
Last Wednesday, President Bush signed into law the US's long-awaited Genetic Information Nondiscrimination Act ('GINA'), heralded as the first civil rights legislation of the new millennium. The legislation swept Congress with a combined almost-unanimous 509-1 vote and will prohibit genetic discrimination by employers, insurers and unions...
6 May 2008 - by MacKenna Roberts 
Following the Senate's unanimous approval the previous week, the US House of Representatives, on Thursday, almost-unanimously (414-1) passed the Genetic Information Nondiscrimination Act ('GINA'), providing final Congressional support for legislation that prohibits genetic discrimination by employers, insurers and unions. The bill (HR 493), which is hailed...
24 September 2007 - by Antony Starza-Allen 
The UK's Human Genetics Commission (HGC) has called for the proposed Equality Bill to include measures to prohibit genetic discrimination both in the workplace and by the insurance industry. Speaking on behalf of the HGC, acting Chairman Sir John Sulston, said that such measures 'would be a...
13 August 2007 - by Antony Starza-Allen 
Proposed legislation geared to protect individuals in the US against genetic discrimination has been blocked by Senator Tom Coburn, who is concerned over it's 'lack of precision' and 'unintended consequences' if the bill becomes law. The Genetic Information Non-discrimination Act (GINA) would make it illegal for employers...
1 May 2007 - by Katy Sinclair 
The first coherent US legislation prohibiting genetic discrimination could be law within months. The House of Representatives has passed the Genetic Information Non-discrimination Act (GINA), which will prevent the public from being disadvantaged on the basis of their DNA. The bill will now progress to the Senate...
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