July 14, 1997 in Nation/World

Clinton Wants To Bar Insurers From Using Gene Tests President To Endorse Legislation Today That Prevents Genetic Discrimination

Washington Post
 
Tags:Medical

President Clinton today will endorse legislation barring health insurance companies from discriminating against healthy people on the basis of their genetic inheritance and helping assure the privacy of genetic information, White House sources said.

Clinton’s call for legislation with more protections against genetic discrimination than those included in last year’s Kassebaum-Kennedy health law comes as rapid-fire biological discoveries are giving doctors and researchers increasing ability to predict who will succumb to various inherited diseases.

Already, widely available blood tests can reveal whether a person harbors genes that increase the risk of getting breast cancer, colon cancer, melanoma, or brain diseases such as Alzheimer’s and Huntington’s disease.

In some cases the information can motivate a person to get more frequent checkups or take preventive action. But genetic information is imprecise and can stigmatize healthy people.

Clinton’s decision to push for heightened protections reflects recommendations in a report to be presented to the president today by Health and Human Services Secretary Donna E. Shalala.

The report, based on findings of a federal task force, warns that the potential benefits of genetic testing may never be realized if people reject the tests out of fear that the information may be used against them.

A number of genetic discrimination cases have come to light in recent years, most of them involving people denied health insurance because of tests indicating they were at increased risk of cancer or other diseases. In some cases people have been discriminated against simply for having requested genetic tests, as insurers assumed anyone asking for such a test was probably at increased risk for an inherited disease.

The legislation to be endorsed by Clinton is a slightly modified version of a bill introduced in January by Rep. Louise M. Slaughter, D-N.Y., that already has bipartisan support with more than 135 co-sponsors.

“The president is well aware that people are both excited and nervous by all the recent changes rooted in the biological revolution, and he believes that (the legislation) will provide a security blanket,” said Christopher Jennings, deputy assistant to the president for health policy development.

The president’s hopes of warming the Senate to his plan were bolstered over the weekend when Sen. Bill Frist, R-Tenn., agreed to back the effort. Frist’s support was considered crucial because he is the Senate’s sole physician, and chairs the subcommittee on public health and safety.

The Slaughter legislation would prohibit health insurers from denying, canceling, refusing to renew or changing the terms, premiums or conditions of health coverage on the basis of genetic information. It also would prevent health insurers from demanding a genetic test as a condition of coverage.

The Health Insurance Portability and Accountability Act passed last year prevents health insurers from denying insurance on the basis of genetic information to people moving from one group plan to another. But the measure places no controls on how expensive that coverage might get.

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