WASHINGTON, DC—In a move described by Senator Edward Kennedy as “the first civil rights bill of the new century,” both houses of Congress this week passed the Genetic Information Nondiscrimination Act (HR 493). The vote was 95-0 in the Senate and 414-1 in the House (with only Rep. Ron Paul voting against).

The new legislation restricts companies’ ability to use genetic information to make employment or insurance decisions. Specifically,
  • employers may not use genetic information in hiring, firing, promotion, or job placement decisions.
  • insurance companies may not use genetic information to set premiums or determine enrollment eligibility.
  • insurance companies may not request or require an individual or family member to undergo a genetic test.

However, the protection applies only to people who carry a gene associated with increased risk of disease who are still well, not to those who are already sick. The bill specifically says that nothing in it will prevent insurer’s ability to raise rates for an employer providing a group health plan if an individual enrolled in the plan actually becomes sick.

“This is about all of us, as there are no perfect specimens at the DNA level; each one of us carries numerous gene variants that increase our risk of developing one disease or another. Therefore, each of us is at risk for genetic discrimination.”—Francis Collins, MD, PhD.

In testimony before the House Subcommittee on Health, Francis Collins, MD, PhD, director of the National Human Genome Research Institute (HRGI), had pointed out that the protections in the legislation affect more than just the person with the more famous high-risk genes, such as those for certain types of cancer.

“This is about all of us, as there are no perfect specimens at the DNA level; each one of us carries numerous gene variants that increase our risk of developing one disease or another. Therefore, each of us is at risk for genetic discrimination,” Dr. Collins said. The HRGI has estimated that each person carries six mutations associated with elevated risk for some disease. Among the areas likely to be affected is emerging genetic profiling are the increased risk of cardiac death associated with some HLA genotypes in rheumatoid arthritis, as well as higher-risk profiles in psoriasis, osteoporosis, and lupus.

The bill was in part due to 10 years of steady pushing by Rep. Louis M. Slaughter, a microbiologist by training, who has introduced a genetic nondiscrimination bill each term since 1995. It is the crest of a broad, fast-moving wave of protective legislation enacted at the state level, where ~35 state laws provide some aspect of protection against genetic discrimination.

Although less widely recognized than the public’s fears about job and insurance discrimination, research interests are also likely to be affected by the new law. According to Dr. Collins, one third of patients interested in research studies on the molecular causes of diseases declined to participate because they were worried about repercussions should their genetic information be released.