All expectant couples and those planning to have children should be offered the option to test for gene mutations that cause CF, it declared. So should people with a family history of the disease and their partners. The panel further recommended that the cost of these tests be covered by insurance. Meanwhile, there is a growing movement to have laws in place to prevent health insurers from denying people insurance, or employers from refusing people jobs, on the basis of their test results. Discrimination of this sort will grow unless new laws ensure that genetic information is confidential, warns Paul Billings, a medical ethicist at Pacific Presbyterian Medical Center in San Francisco.
Many states are far ahead of the federal government in enacting such laws.
Sixteen states have passed legislation prohibiting health insurers from certain acts of discrimination based on the results of genetic tests, and eleven states have passed laws to protect people against discrimination from employers. A spate of new bills dealing with these issues is likely to surface in Congress soon. One bill signed into law by President Clinton in the fall of 1996 says that genetic information shall not be treated as a preexisting condition in the absence of the diagnosis of the condition. While CF carrier testing in the schools might have some advantages, as students are a captive audience mostly in the pre-pregnancy state, geneticists fear that confusion about the tests' results might lead to stigma. They remember what happened in the early 1970s, when the nation embarked on an energetic program of screening for sickle cell anemia , which affects 1 in 400 African-Americans.