No Rush Seen for Genetic Anti-Bias Laws

A day after President Clinton and leading scientists warned that the great achievement of deciphering human DNA also could lead to discrimination, Republican aides in Congress said that there is no need to pass anti-discrimination protections this year.

Improvements in genetic testing have allowed doctors to determine whether someone has an elevated risk of developing breast cancer, colon cancer or certain other diseases, years before symptoms appear. Tests for hundreds of other diseases will be available soon, thanks to the landmark achievement--announced Monday at a White House ceremony--that two teams of scientists had separately mapped the full chemical sequence of human DNA.

While the tests will allow people to take preventive measures based on their own risk factors, Clinton and the two scientists leading the DNA decoding efforts said Monday that new laws are needed to make sure people are not penalized at work and in the insurance market because of their genetic profiles.

On Tuesday, congressional aides said it is unlikely that the House will take up the most prominent anti-discrimination measure this year, and an aide to a top GOP lawmaker said that there is no rush to do so.

“There [has] been no incidence of genetic discrimination that anyone can point to at this period of time,” said Stephen Schmidt, spokesman for House Commerce Committee Chairman Thomas J. Bliley Jr. (R-Va.). “However, this clearly is an issue that Congress will have to deal with in time.”

Schmidt’s words echoed those of Bliley himself. In a letter to other House members earlier this month, Bliley suggested there is little evidence that genetic discrimination is a threat.

Bliley’s view sharply differs from that of the scientists who obtained the first rough draft of the human genetic code, also called the human genome. It may also differ with the views of the American public. A CNN-Time magazine poll published this week found that 46% of respondents thought that obtaining the genetic code would have harmful results.

DNA is the material in nearly every cell that contains genes. Genes control most of what goes on in the body and, when genes go awry, the result is often disease. Scientists are able to devise tests to detect flawed genes. That work will become easier now that scientists have produced a draft of the human genetic code.

At Monday’s announcement, both Dr. Francis Collins, who led an international research team funded largely by the U.S. government, and Dr. J. Craig Venter, who led a team at Celera Genomics, a private biotechnology company, said that their work could lead people to understand their own individual risk factors for disease and to take preventive measures. But both also warned that people will shun genetic testing if they believe insurers or employers will use the information against them.

“Genetic discrimination in insurance and the workplace is wrong and it ought to be prevented by effective federal legislation,” Collins said. He added that the need for laws could no longer be put off, now that the full text of human DNA is in hand.

“If we needed a wake-up call to say it’s time to do this, isn’t today the wake-up call?” he asked.

Current law bars insurers from denying coverage to the 170 million people in group health plans based on genetic testing or from raising premiums on an individual in a group plan based on the tests.

President Clinton and other supporters of a federal law have focused on a proposal from Rep. Louise McIntosh Slaughter (D-N.Y.) that supporters say would toughen those protections. The bill would also extend new protections to the 13 million people who obtain insurance as individuals. It would also bar employers from using genetic information to discriminate in hiring, promotions and in setting salaries.

However, supporters of the bill said that Bliley has blocked the measure by refusing to schedule hearings in the House Commerce Committee. They have gathered more than 150 of the 218 signatures needed to move the bill to the full House without committee hearings.

In the Senate, lawmakers are debating whether to include some less-extensive anti-discrimination language in the patients’ bill of rights.

That measure would impose new regulations on health maintenance organizations.

Dean Rosen, general counsel for the Health Insurance Assn. of America, said that the Slaughter bill would make it impossible for insurers to conduct routine tests such as for cholesterol levels, which they now do before setting premiums for individuals. He said that the bill could have the unintended consequence of encouraging people to wait until they are sick before they seek insurance coverage.