Magazine article Science News

Genetic Discrimination: A Prejudice Is Born

Magazine article Science News

Genetic Discrimination: A Prejudice Is Born

Article excerpt

She is unusually tall, with an expansive reach and long, reed-thin fingers and toes-traits marking a condition so distinctive that ancient physicians named it arachnodactyly, after the Greek word for spider. But it was her honesty, not her skeletal disorder, that nearly cost the woman her job.

She was fired the day after she told her employer, a law firm, that she had the genetic anomaly now known as Marfan syndrome. She got her job back only after she threatened to haul her employer into court.

This story is true. And although the woman's name has been withheld to protect her from further discrimination, she is not alone. A study in the Oct. 25 Science indicates that nearly one-fourth of members of support groups for a variety of genetic disorders report that they have experienced discrimination.

"I'm inclined to believe that although the numbers may vary in other studies, this is a problem our society needs to deal with," says E. Virginia Lapham of Georgetown University in Washington, D.C., an author of the report.

The study, funded by the government's Human Genome Project in Bethesda, Md., is the most extensive attempt so far to document genetic discrimination.

Although just 3 percent of children are born with rare genetic anomalies like Marfan syndrome, researchers say the pool of potential victims of discrimina- tion will expand each time science pinpoints a gene, or group of genes, that raises a person's risk of developing such illnesses as heart disease or breast cancer.

Measuring the true extent of the problem may prove challenging, however, because of widespread fears about the misuse of genetic information should it fall into the hands of insurers or employers.

To locate people who might be willing to cooperate in such a study, Lapham and her colleagues contacted more than 100 support groups, with a combined total of 585,000 members, and asked for volunteers. …

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