Civil protections will open doors to better health, research

THE ISSUE Congress has cleared a measure to ban discrimination based on genetic information that shows disposition to certain diseases.

WITH civil rights protections in place, more Americans are likely to choose testing for their genetic propensity to diseases, which will give them a better chance of staying healthy and aid research to prevent development of illnesses.

Thirteen years in the making, Congress has finally approved landmark legislation to bar health insurance companies and employers from discriminating against a person who is predisposed to cancer, diabetes and other disorders. The legislation also forbids required testing.

First put forward in 1995, the measure this week received only one "no" vote in the House from Ron Paul, the Texas Republican presidential candidate. The Senate overwhelmingly approved it last week and while President Bush is usually inclined to heed lobbying from big-muscle business interests like the U.S. Chamber of Commerce, which opposed the bill, he is expected to sign it.

The legislation would prevent insurers from denying health coverage as they did to black workers who were told they were being screened for cholesterol but were tested instead for sickle cell and other genetic disorders by a national laboratory. Other cases involved railroad workers whose employers sought genetic testing without their knowledge after they filed work-related injury claims.

Such incidents forced patients to have to choose between genetic tests that might help them ward off hereditary conditions or face possible discrimination if the conditions were revealed.

Research has been hampered by people's reluctance to submit to tests that could eventually unravel mysteries about why certain individuals develop illnesses. Clinical trials for new treatments also were impeded.

A survey last year by the Washington-based Genetics and Public Policy Center at Johns Hopkins University found that while most Americans approved of genetic testing, more than 90 percent were afraid that the information could be used against them.

The federal government, through an executive order by President Bill Clinton, banned genetic testing for its employees and for genetic information to be used in decisions on hiring and promotions.

The bill extends protections universally and should encourage people to find out whether they are at risk for developing heart problems, Parkinson's disease and cystic fibrosis, among other ailments.

Although not everyone with genetic identifiers will come down with a disease, mitigating treatment can be put into play early on. Scientists and researchers will be able to gather data that could lead to cures and can more fully explore therapies and medication if more people are willing to submit to testing.