Judge Not by the Genes

The U.S. Senate voted unanimously this afternoon to prohibit employment or health insurance discrimination on the basis of an individual's genetic profile. Although 38 states have passed varying versions of genetic antidiscrimination bills, the legislation provides the first comprehensive federal regulation in this area. Experts say it will dampen fears that genetic information will be misused and will boost participation in gene-finding studies.

Genetic tests have been used for more than a decade. With the new technology, however, came the possibility of abuse--for example, the denial of health insurance based on test results showing a genetic predisposition to breast cancer. Although few actual cases of discrimination have been documented, many people avoid genetic testing based on such fears, says Wendy Uhlmann, who coordinates the medical genetics clinic at the University of Michigan, Ann Arbor.

The bipartisan Senate bill is sponsored by Olympia Snowe (R-ME). A related bill has languished in a House of Representatives committee since May, however, so it's not clear when a law would take effect. Senator Edward Kennedy (D-MA) expressed hope that the Senate vote would spur the House into action. "We're hopeful as well," says Megan Thompson, communications director in the office of Representative Louise Slaughter (D-NY), who is the lead sponsor on the House bill. Slaughter's office plans to introduce the Senate bill directly to the House, with the aim of speeding its passage.

The elimination of genetic discrimination is particularly critical as genetic tests become more prevalent, says Kathy Hudson, director of the Johns Hopkins University Genetics and Public Policy Center in Washington, D.C. Although the practice began as a way to spot disease genes in fetuses or young children, Hudson and others say, it's increasingly common for healthy adults to use them to gauge their predisposition to disease.

Related sites
Text of Senate bill
Genetics and Public Policy Center