Of Genes and Pink Slips: Genetic Testing Goes to Work

Genetic testing was first labeled an advancement, allowing us to improve preventative medicine. Now it's being used in workplaces to label employees -- and some call that a violation of privacy.

When it first became possible to test for the genetic risks of isolated diseases, the advance was widely hailed as a modern medical near-miracle, sure to improve preventative healthcare and treatment. People with the potential risk of contracting inherited conditions such as breast cancer, colon cancer and Huntington disease now commonly undergo genetic testing to gauge their chances. As of April 1999, more than 550 genetic tests were being used to diagnose disease.

But the powerful information can also pose a triple-edged threat to tested workers' jobs, health insurance and privacy.

Some employers-about 10% and growing, according to a 1998 survey by the American Management Association -- now routinely test employees for genetic predispositions to diseases.

Privacy experts warn that genetic test results will be misused to target and fire employees who may run up company health insurance costs or to deny them coverage. And without specific privacy controls on the evolving medical information, they claim the hardship of diagnostics can follow workers from job to potential job, hampering their chances at finding additional work.

For too many people, the fears are already a reality. According to a 1996 Georgetown University poll of 332 families with perceived genetic risks:

• 22% reported they had been refused health insurance, and
• 13% had been fired from their jobs based on their perceived genetic risks.

About half the states now have laws that either protect against genetic discrimination or prohibit the testing in employment or insurance decisions -- and dozens more bills are pending to get these protections in place. The next frontier is likely to be federal legislation curbing the use and abuse of genetic testing in the workplace.

Currently, the only federal law that directly addresses the issue of genetic discrimination is the 1996 Health Insurance Portability and Accountability Act, which prohibits group health plans from using genetic information as a basis for denying or limiting coverage or for charging an individual more for premiums.

But that law will not prevent employers from firing -- or refusing to hire -- people because of genetic information they learn about them. The Americans With Disabilities Act protects people who show symptoms because of genetic disabilities. But it does not protect workers who are identified through genetic testing as being at a high risk of developing a disease, but who do not yet have the disease.