US congress approves genetic anti-discrimination law

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 as the first major civil rights legislation of the 21st century, now proceeds onto President Bush who has promised to sign the act into law.

GINA prevents insurers and employers from requesting or requiring predictive genetic testing. Employers will not be able to hire, fire, promote or compensate an employee on the basis of a genetic test revealing a biologically increased risk of disease, suspected to hinder future work productivity or require costly benefit provision. Violations could cost employers steep fines up to £150,000 per breach. Health insurers also will not be able to determine coverage eligibility, premium rates or increases based upon genetic tests indicating susceptibility to disease and may only continue to consider existing/expressed diseases. The landmark protections do not extend to the US military and only apply to health insurance, silently omitting any other type, including life or long-term care insurance. Once signed by Bush, the insurance measures will take effect in one year and the employment measures become effective after 18 months.

The overwhelming support for the bill belies its thirteen-year struggle for passage. Health insurance, employer and business interest groups pressured representatives to bury previous versions in committee before reaching a floor-vote. This time conservative Senators achieved 'concessions' to protect business-interests, including employers avoiding liability for genetic discrimination involving the employer's health plan. However, the US Chamber of Commerce, which represents 3 million businesses, still opposes the current amended bill. Texan House Republican Ron Paul, who opposes federal government's intrusive role to protect privacy, was the only person to vote against the bill.

Doctors hope that GINA will abate popular fears that people's genetic information will be misused, thereby encouraging people to seek testing and participate in research trials. The National Institutes of Health (NIH) reported that 32 per cent of women declined breast cancer testing because they were scared they would lose their health insurance. An NIH study of families with a history of colon cancer found that 68 per cent said they would not pay through their insurer for fear of losing coverage and 26 per cent would give a false name. In a 2001 study by the American Management Association, nearly two-thirds of major US companies require new employee medical examinations. Fourteen per cent conduct tests for susceptibility to workplace hazards, three per cent for breast and colon cancer, and one per cent for sickle cell anemia. Twenty per cent require family medical history.

'We will never unlock the great promise of the Human Genome Project if Americans are too afraid to get genetic testing,' said GINA co-sponsor House Representative Judy Biggert. 'No one should fear for their job or health coverage because of the genes they were born with, and now they won't have to', she explained.