In April 1999 Terri Seargent went to her doctor with slight breathing difficulties. A simple genetic test confirmed her worst nightmare: she had alpha-1 deficiency, meaning that she might one day succumb to the same respiratory disease that killed her brother. The test probably saved Seargent’s lifethe condition is treatable if detected earlybut when her employer learned of her costly condition, she was fired and lost her health insurance.

Seargent’s case could have been a shining success story for genetic science. Instead it exemplifies what many feared would happen: genetic discrimination. A recent survey of more than 1,500 genetic counselors and physicians conducted by social scientist Dorothy C. Wertz at the University of Massachusetts Medical Center found that 785 patients reported having lost their jobs or insurance because of their genes. “There is more discrimination than I uncovered in my survey,” says Wertz, who presented her findings at the American Public Health Association meeting in Boston in November, 2000. Wertz’s results buttress an earlier Georgetown University study in which 13 percent of patients surveyed said they had been denied or let go from a job because of a genetic condition.

Such worries have already deterred many people from having beneficial predictive tests, says Barbara Fuller, a senior policy adviser at the National Human Genome Research Institute (NHGRI), where geneticists unveiled the Homo sapiens blueprint. For example, one third of women contacted for possible inclusion in a recent breast cancer study refused to participate because they feared losing their insurance or jobs if a genetic defect was discovered. A 1998 study by the National Center for Genome Resources found that 63 percent of people would not take genetic tests if employers could access the results and that 85 percent believe employers should be barred from accessing genetic information. So far genetic testing has not had much effect on health insurance. Richard Coorsh, a spokesperson for the Health Insurance Association of America, notes that health insurers are not interested in genetic tests, for two reasons. First, they already ask for a person’s family historyfor many conditions, a less accurate form of genetic testing. Second, genetic tests cannotexcept for a few rare conditions such as Huntington’s diseasepredict if someone with a disease gene will definitely get sick.

Public health scientist Mark Hall of Wake Forest University interviewed insurers and used fictitious scenarios to test the market directly. He found that a presymptomatic person with a genetic predisposition to a serious condition faces little or no difficulty in obtaining health insurance. “It’s a non-issue in the insurance market,” he concludes. Moreover, there is some legislation against it. Four years ago the federal government passed the Health Insurance Portability and Accountability Act (HIPAA) to prevent group insurers from denying coverage based on genetic results. A patchwork of state laws also prohibit insurers from doing so.

Genetic privacy for employees, however, has been another matter. Federal workers are protected to some degree; in February 2000, President Bill Clinton signed an executive order forbidding the use of genetic testing in the hiring of federal employees. But this guarantee doesn’t extend to the private sector. Currently an employer can ask for, and discriminate on the basis of, medical information, including genetic test results, between the time an offer is made and when the employee begins work. A 1999 survey by the American Management Association found that 30 percent of large and midsize companies sought some form of genetic information about their employees, and 7 percent used that information in awarding promotions and hiring. As the cost of DNA testing goes down, the number of businesses testing their workers is expected to skyrocket.

Concerned scientists, including Francis S. Collins, director of the NHGRI and the driving force behind the Human Genome Project, have called on the Senate to pass laws that ban employers from using DNA testing to blacklist job applicants suspected of having “flawed” genes. Despite their efforts, more than 100 federal and state congressional bills addressing the issue have been repeatedly shelved in the past two years. “There is no federal law on the articles to protect [private-sector] employees, because members of Congress have their heads in the sand,” contends Joanne Hustead, a policy director at the National Partnership for Women and Families, a nonprofit group urging support of federal legislation. “Your video rental records are more protected,” she claims.

Wertz also believes that more laws are simply Band-Aids on the problem: “We need a public health system to fix this one.” And she may be right. In nations such as Canada and the U.K., where a national health service is in place, the thorny issue of genetic discrimination is not much of a concern.

While policymakers play catch-up with genetic science, Seargent and others are hoping that the Equal Employment Opportunity Commission (EEOC) will help. The EEOC considers discrimination based on genetic traits to be illegal under the Americans with Disabilities Act of 1990, which safeguards the disabled from employment-based discrimination. The commission has made Seargent its poster child and is taking her story to court as a test case on genetic discrimination.

Seargent, who now works at home for Alpha Net, a Web-based support group for people with alpha-1 deficiency, doubts she’ll be victorious, because all but 4.3 percent of ADA cases are won by the employer. She does not regret, however, having taken the genetic test. “In the end,” she says, “my life is more important than a job.” Ideally, it would be better not to have to choose.