Congress passes anti-genetic discrimination bill

The Associated Press
• May 1, 2008

WASHINGTON — Anyone who can trace breast cancer in the family, or sickle cell anemia, Lou Gehrig’s or some other affliction, will be understandably concerned about a genetic test showing a predisposition for debilitating diseases.

But what they shouldn’t have to worry about is a health insurer using that information to raise their rates, or their boss firing them to save on the company’s medical costs, a problem Congress hoped to solve today when it overwhelmingly passed the nation’s first anti-genetic discrimination bill.

President Bush is expected to soon sign the Genetic Information Nondiscrimination Act, which would prohibit health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

Lawmakers and advocates called the bill ‘‘the first major civil rights act of the 21st century.’’

Federal law already bans discrimination by race and gender. ‘‘Your skin color, your gender, all of those are part of your DNA,’’ said Francis Collins, head of the National Human Genome Research Institute. ‘‘Shouldn’t the rest of your DNA also fall under that protective umbrella?’’

Lawmakers and advocates told tales of Americans using fake names, or paying cash or flat-out refusing genetic tests out of fear that their companies or insurers would find out what was in their genes.

That’s bad for researchers, who need genetic testing to develop cures for crippling diseases such as cystic fibrosis, Huntington’s or Lou Gehrig’s.

‘‘We will never unlock the great promise of the Human Genome Project if Americans are too afraid to get genetic testing,’’ said Rep. Judy Biggert, R-Ill.

It’s also potentially harmful to people, said Rep. Louise Slaughter, D-N.Y.