Senate Votes to Bar Insurance Denials Based on Genes


Spurred by the landmark announcement Monday that the text of the human genetic code is nearly in hand, the Senate on Thursday voted to bar insurance companies from denying policies to people based on their genetic predisposition to disease.

On a 58-40 vote, the Senate endorsed a proposal by Sen. James M. Jeffords (R-Vt.) that offered new but milder limits on insurers than most Democrats would like. Three Democrats, including Sen. Dianne Feinstein of California, joined Republicans in supporting the measure.

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. The Jeffords measure would extend those protections to the 13 million people who obtain insurance as individuals.

Democrats said that the Jeffords proposal lacked several important protections, including provisions to stop insurers from revealing the results of genetic tests to other parties, such as employers. “It’s not half a loaf; it’s no more than a thin slice,” Sen. Edward M. Kennedy (D-Mass.) said of the Republican measure.


The legislation’s future is uncertain. It is attached to a huge appropriation bill that President Clinton has threatened to veto for unrelated reasons.

On a party-line vote of 54 to 44, senators rejected a broader Democratic proposal that not only would have set tougher limits on insurers but also would have prohibited employers from using genetic information to make hiring, salary or other job-related decisions.

Scientists have developed tests that can tell whether a person has genes that raise the risk of developing breast cancer, colon cancer and many other diseases. Now, having mapped nearly all the genetic material in human cells, scientists may be able to scan all of a person’s genes and deliver a detailed profile of the risk for a patient to develop any of hundreds of illnesses.

That information might spur people to take preventive measures. But some scientists and lawmakers have said that people will refuse to be tested if the results can cost them a job or insurance coverage.


Senate Minority Leader Tom Daschle of South Dakota offered the Democratic proposal.

Republicans said that it had not been adequately studied and that the Americans With Disabilities Act already bars workplace discrimination based on someone’s genes. But Democratic lawmakers have said there is anecdotal evidence that such discrimination has already occurred.

They cited the case of Terri Seargent, a North Carolina woman who says she was fired as an insurance company manager after her employers learned that she tested positive for potentially fatal amino acid deficiency. Seargent says that the test allowed her to take medication to control the illness and that she had received high praise and a bonus before the company decided to fire her.

“Genetic discrimination is not clearly prohibited--in the workplace or anywhere else,” Daschle said.


In 1995, the Equal Employment Opportunity Commission issued guidance to employers, saying that the Americans With Disabilities Act bars discrimination based on the results of genetic testing. But one commissioner, Paul Steven Miller, said in an interview that the issue is unresolved.

“While we issue policy guidance, it does not have the effect of statute or published legal opinion, and courts may disagree” with the commission, he said.

The Daschle proposal would have also toughened existing laws regarding how insurers may use genetic testing. Except for Sen. Arlen Specter of Pennsylvania, all Senate Republicans voted against the measure.

In announcing Monday that scientists have mapped nearly all human genetic material, Clinton called for a workplace antidiscrimination law, as did Dr. Francis Collins, who led one of two teams responsible for the mapping breakthrough.


The leader of the second team, Dr. Craig Venter of Celera Genomics Corp., called generally for “new laws to protect us from genetic discrimination.”