Bills would bar genetic data from insurers

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Two key House panels passed legislation this week that would allow genetic testing to play a bigger part in the country's health care system by prohibiting insurers from discriminating against patients with bad genes.

The House Energy and Commerce and Ways and Means committees approved bills prohibiting health insurance companies from collecting genetic information and from requesting, requiring or buying such information for insurance underwriting. The full House is expected to pass the bill next week, and the White House has indicated support for a ban on genetic discrimination. A Senate committee has passed similar legislation.

Genetic tests are available for more than 1,300 diseases, many of them rare conditions. Analysts have estimated that by 2009, the genetic-testing market -- with more than 20,000 genes in the human body -- could be worth $12.5 billion annually.

But patients fear that test results could be used in ways to deny them health insurance or a job without a federal law.

"In the future, we'll understand diseases at a new level," said Health and Human Services Secretary Michael O. Leavitt. "We'll know them as gene- or molecular-based diseases. And that will give us new kinds of treatments that will be effective for both the very specific condition and the individual patient."

Speaking to genetic researchers and pharmaceutical industry representatives in Washington, Mr. Leavitt said President Bush supports the legislation and outlined the administration's course to make health care more personalized. A personalized health care system, he said, would combine scientific breakthroughs of the human genome with health-information technology that allows physicians and hospitals to easily exchange data.

"Every one of us is biologically unique," Mr. Leavitt said. "We haven't had the knowledge to deliver health care at that kind of individual level. That's what's changing."

Mr. Leavitt said that along with continuing research at the National Institutes of Health, his department will devote $352 million next year to support projects to advance electronic medical records and create standards for putting genetic information on electronic medical records. And the department will work with the National Cancer Institute to define the leading 100 genetic variations in the body that current drugs cannot treat.

The promise of using genetic information in health care includes recognizing cancer on an individual basis to optimize the treatment process. For instance, a genetic test was recently created to monitor the emergence of a patient's resistance to Gleevec, a prominent leukemia drug. About 4 to 5 percent of leukemia patients do not respond to Gleevec.

In addition, testing a person's DNA could reduce the more than 2 million adverse reactions to drugs that occur each year, resulting in about 137,000 deaths.

The need to get dosage levels right led a Food and Drug Administration advisory committee to recently recommend genetic testing for patients receiving the generic blood thinner Warfarin, which is used to treat blood clots. Dosage levels of Warfarin are adjusted for the patient through rounds of trial and error, during which the patient may be at risk of excessive bleeding or further blood clots.

An obstacle to the widespread adoption of genetic information is privacy. A survey released this week found that while 90 percent of Americans support the use of genetic testing by doctors to identify a person's risk for future disease, 90 percent also are concerned that test results could be used in ways to deny them health insurance or a job. The survey was conducted by the Genetics and Public Policy Center, a human genetics research firm in Washington.

"While the public trust their doctors and genetic researchers, they simply do not trust health insurers or employers to have access to their genetic information," said Kathy Hudson, director at the Genetics and Public Policy Center.

The legislation passed this week supercedes a patchwork of federal and state laws that offer only partial protection against the misuse of genetic information.

"We need to establish a federal law to ensure genetic information cannot be misused," Mr. Leavitt said.