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'.