After 13 years, Congress OKs genetic bias ban

The bill would bar health insurers from basing eligibility or premiums on genetic information.

By Dave Hansen, AMNews Staff. May 19, 2008.

Washington -- House and Senate passage of legislation to prohibit genetic discrimination has moved the federal government closer to eliminating a major barrier to these screenings -- patients' fear, physicians say.

"Genetic testing holds great promise for improving public health, and patients must be able to trust that their genetic information will be protected from inappropriate and discriminatory uses," said American Medical Association Board of Trustees Chair Edward L. Langston, MD. "This bill will allow patients to take advantage of scientific advances in genetics, such as screenings and therapies, without worrying that their personal health information could be used against them by insurers or employers."

The Genetic Information Nondiscrimination Act, which President Bush is expected to sign, would ban health insurance companies from basing eligibility or premiums on genetic information. It also would prohibit employers from hiring, firing, promoting or placing employees on the basis of genetic information.

"This is a great gift to all Americans," said Francis S. Collins, MD, PhD, director of the National Human Genome Research Institute. "Since each of us has dozens of genetic variations that may put us at risk for disease, we all would have had a reason to be concerned about the possible misuse of genetic information."

Patients definitely fear the consequences of genetic tests, said Edward R. B. McCabe, MD, PhD, physician-in-chief at Mattel Children's Hospital at the University of California, Los Angeles and professor and executive chair of its Dept. of Pediatrics.