Thirteen years in the making, the Genetic Information Nondiscrimination Act (GINA), which prohibits employers and health insurance companies from denying jobs or coverage based on an individual’s DNA, finally became law in May. Advocates of the measure consider its protections crucial to the advance of medical research and personalized medicine, both of which rely increasingly on genetic testing.
At present, genetic tests exist for more than 1,500 conditions. Defects in single genes are known to cause illnesses such as sickle cell anemia, cystic fibrosis, and Huntington’s disease. However, most disease genes discovered in the past decade indicate only an elevated risk, not a certainty, of developing the disorders with which they are associated, including cancer, diabetes, and heart disease.
GINA’s safeguards address concerns about identifying potential genetic liabilities in otherwise healthy people. Researchers say that knowledge of a person’s genetic risk can guide more effective preventive and therapeutic approaches. But studies have shown that many people avoid getting tested because they are afraid the results will somehow be used against them.
“By removing the fear of discrimination, GINA may now allow people to engage in testing that will improve prevention and treatment,” says Joann Boughman, executive vice president of the American Society of Human Genetics. “Hopefully it will lead to a change in mind-set in medical practice.”