Bush Seeks Law Banning Genetic Discrimination

TIMES STAFF WRITER

President Bush on Saturday equated discrimination based on genetic information with race, age and gender bias, and said he would support legislation to make it illegal.

The nearly complete mapping of the human genetic code has given rise to concerns that information about a person's genetic makeup could be used to deny jobs or health insurance or to raise insurance premiums.

"Genetic discrimination is unfair to workers and their families," Bush said in his weekly radio address. "It is unjustified--among other reasons, because it involves little more than medical speculation."

He said a "genetic predisposition toward cancer or heart disease does not mean the condition will develop.

"To deny employment or insurance to a healthy person based only on a predisposition violates our country's belief in equal treatment and individual merit."

Bush's remarks mark the first time he has spoken publicly about the issue since taking office five months ago and come in the midst of a heated partisan debate over another health care issue: the right of patients to sue health maintenance organizations. Bush is spending the weekend at his ranch in Crawford, about 30 miles from here.

Proponent Has Built Broad Support for Ban

The president's address drew praise from Rep. Louise McIntosh Slaughter (D-N.Y.), who has fought for the last five years for legislation to protect people against discrimination based on their genetic makeup.

She said if people fear that the results of genetic tests could be used against them, they are less likely to be tested and to undertake preventive treatments.

However, Slaughter was disappointed that Bush did not address penalties for those who use genetic information to discriminate and did not speak about the need to keep a patient's genetic information from being shared with insurance and drug companies.

"Privacy issues are important and they're not there" in Bush's remarks, she said in a telephone interview.

Slaughter, a former microbiologist, said she has 250 Democratic and Republican co-sponsors for legislation to ban such discrimination. One such measure has been attached to a Republican bill protecting patients' rights in health care, but the bill is opposed by many House Democrats.

Senate Majority Leader Tom Daschle (D-S.D.) has pledged to try to pass an antidiscrimination bill by the end of the summer, Slaughter said. Daschle's efforts to win approval of a wide-reaching provision last year were scuttled by Republicans.

The question facing legislation banning genetic discrimination is not whether it can be passed but how strong it will be.

The issue has taken on new urgency since Feb. 12, when scientists said they had mapped 95% of the human genetic code. Their research determined that, while humans are 99.9% identical at the genetic level, clues to susceptibility or resistance to disease may lie within the 0.1% of individuals' genes that make them different from others.

Genetic faults have been linked to thousands of diseases, including cystic fibrosis; diabetes; schizophrenia; Alzheimer's; breast, colon and other cancers; and heart disease. These discoveries have led to tests for genetic "markers" for certain diseases, as well as treatment for some conditions.

But the information raises serious moral and legal questions, among them whether to seek testing if the information can be abused and how to treat the misuse of genetic information.

"In the past, other forms of discrimination have been used to withhold rights and opportunities that belong to all Americans," Bush said. "Just as we have addressed discrimination based on race, gender and age, we must now prevent discrimination based on genetic information."

He said that his administration is working on its own legislation to ban genetic discrimination and that he wants a law "that is fair, reasonable and consistent with existing discrimination statutes."

"We will all gain much from the continuing advances in genetic science. But those advances should never come at the cost of basic fairness and equality under law," he said.

Individuals Still Left Unprotected

A year ago, then-President Clinton and leading scientists called for such legislation. That spurred the Senate, but not the House, to pass a measure barring insurance companies from denying policies to people based on their genetic predisposition to disease.

Current law bars insurers from using genetic information to deny coverage to the 170 million people in group health plans or to raise individual premiums. But those who obtain insurance as individuals are not protected, and insurers are not blocked from revealing the results of patients' genetic tests to others, including a patient's employer.

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