Bill barring genetic discrimination stalls in the House

Employers blocking the legislation fear the law would add to their liability woes; supporters say federal regulation is needed to protect patients and advance research.

By Kevin B. O'Reilly, AMNews staff. Sept. 26, 2005.

A unanimous vote in the Senate and unambiguous support from President Bush this year have not been enough to secure so much as a hearing in the House for a bill barring employers and health insurers from using genetic information in hiring, premium and coverage decisions.

In February, the Senate voted 98-0 in favor of the Genetic Information Nondiscrimination Act of 2005, which would amend federal health and employment laws to ban genetic discrimination, penalize violators and allow patients to sue for damages. An identical bill has garnered 120 co-sponsors in the House but so far failed to get a hearing despite having a Republican, Rep. Judy Biggert (R, Ill.), as the lead sponsor. Rep. Louise Slaughter (D, N.Y.) has championed the legislation for nearly a decade without success.

But supporters expect that the tide is turning.

"My hopes this year are much higher because we have a Republican champion this time," said Sharon Terry, president and CEO of the Genetic Alliance, a coalition of more than 600 genetic disorder advocacy groups.

There are 860 clinical tests for genetic disorders, said Roberta Pagon, MD, principal investigator at the University of Washington-Seattle's GeneTests, a publicly funded medical genetics information resource. Among the more commonly used are tests for cystic fibrosis, sickle-cell anemia and breast cancer, said Dr. Pagon, who supports the bill.

All but three states ban health insurers from limiting, canceling or denying coverage based on genetic information, and 33 states have laws prohibiting employers from basing hiring decisions on genetic information, according to the National Conference of State Legislatures.