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. After a 12-year struggle to pass this legislation, Democrat House Representative Louise Slaughter, who first introduced the legislation, declared it 'a tremendous victory for every American' because everyone is 'predisposed to at least a few genetic-based disorders...'.
GINA generally prevents insurers and employers from requesting predictive genetic testing or accessing their results. Employers will not be able to hire, fire, promote or compensate an employee on the basis of genetic tests. The employment provisions - which become effective in 18 months - require victims to prove intentional discrimination but allow recovery of punitive and compensatory damages leading to potentially steep fines against employers up to £150,000 per breach. Critics say that the provisions are too broad and will open the floodgates to frivolous litigation.
Health insurers likewise will not be able to determine coverage, premium rates or increases/changes to terms based upon genetic tests indicating susceptibility to disease and may only continue to consider existing/expressed diseases. The health insurance protections - which come into effect in one year - are criticised for not including long-term care or life insurance.
The actual impact of GINA may be minimal in preventing genetic discrimination which is reportedly rare but the key benefit is hope that Americans will feel safer. While opponents argue GINA is premature, studies and healthcare professionals support that a prevalent public fear exists that their genetic information will be abused. Whether genetic discrimination is or will be a genuine threat, it is hoped that GINA will alleviate the public anxieties about genetic testing. Sharon Terry, president of the Coalition and CEO of Genetic Alliance stated that 'individuals no longer have to worry about being discriminated against on the basis of their genetic information, and with this assurance, the promise of genetic testing and disease management and prevention can be realised more fully'.
Most states already have some regulation - 35 states have employment laws banning genetic discrimination and 47 states have laws restricting genetic discrimination in health care - but supporters feel the legislation implements a unified federal standard, sending a strong message that DNA may not be used for commercial advantage by employers or insurers.
Despite overwhelming popular support, GINA is not without major concerns. A fundamental objection is that it completely overlooks regulation of the genetic testing industry itself. The commercial market for direct-to-consumer genetic testing is largely unregulated lacking a regulatory entity or standards that assist people to understand test results or assess the validity of tests available. Bogus tests can cause needless worry or false reassurance based on their results. US government agencies issued a joint consumer warning against home testing and 24 states have laws restricting their availability but many feel this is not adequate.
Other concerns are that the special status that GINA affords genetic test information and the increased liability to insurers and employers will cause them to not provide this testing as part of basic healthcare plans. Still others argue that the function of this information to identify genetic susceptibility to disease can in many situations be equally obtained from non-genetic testing which inexplicably does not attract GINA's increased privacy protections.