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 life--the condition is treatable if detected early--but 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. 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.
This article was originally published with the title Pink Slip in Your Genes.