WASHINGTON, D.C.--After Christine DeMark told her boss she was getting a test for a gene defect linked to Huntington's disease, her employer "did everything they could to force me to quit," she said at a press conference here today. A month after her test results showed her at risk for the disease, the company, she said, fired her without citing a reason. Now a committee of ethicists has devised a set of recommendations for federal and state legislators that could help protect people like DeMark from genetic discrimination. But some experts say the guidelines, published in today's issue of Science* and unveiled at the press conference, are too lax.
As genetic tests become more widespread, ethicists are becoming increasingly concerned about their improper use. Because almost everybody has between five and 30 significant mutations in their DNA, "no one can count themselves as being immune from this problem," says committee co-chair Francis Collins, director of the National Human Genome Research Institute in Bethesda, Maryland. His panel's key recommendation is that the federal government bar employers from using genetic information for hiring purposes, "unless [they] can prove that this information is job related and consistent with business necessity." It also suggests that employers be prevented from requiring applicants or employees to undergo genetic tests or provide test results, that violators of genetic discrimination laws should be punished, and that victims of genetic discrimination be allowed to sue.
Only a handful of states have outlawed discrimination based on genetic testing, and most laws are aimed at specific tests, such as one for sickle cell anemia. "There is no uniform protection against the use of or access to genetic information in the workplace," says panel member Karen Rothenberg, a health lawyer at the University of Maryland. She hopes that laws based on these guidelines will protect against what she calls "the triple threat" posed by genetic information: employer discrimination, the fear of losing health insurance, and the loss of privacy.
Some bioethicists, however, say the recommendations don't go far enough to protect individuals. George Annas, a health lawyer at Boston University, decries the idea that companies may be able to make use of genetic information in cases of business necessity. "That's a giant loophole," he says. Annas believes that some businesses will argue that unhealthy employees cost them money, and therefore most genetic information is a business necessity. "If we ever got a test for the Alzheimer's gene, probably every company would want to know that about their management people," he says. Collins responds that the exception is designed strictly for employers to assess a person's current ability to do the job. Discrimination based on "some future potential risk," he says, would be unfair.