ACLU Applauds Clinton Order Barring DNA Discrimination in Federal Workplace, Calls for Comprehensive Privacy Protections for All

FOR IMMEDIATE RELEASE
Tuesday, February 8, 2000

NEW YORK — The American Civil Liberties Union welcomes President Clinton’s executive order barring the federal government from using genetic information in any hiring or promotion decisions, and we urge Congress to act immediately to establish such protections for all U.S. workers.

As the cost of genetic testing declines — and the number of conditions that can be tested for increases — genetic testing may soon become as common as drug testing. Without meaningful privacy safeguards against discrimination, the potential medical benefits of genetic testing will be lost as Americans avoid tests for fear of possible adverse consequences.

Many individuals and families are experiencing discrimination already. A 1996 Georgetown University study, for example, found that of 332 families belonging to genetic disease support groups, 22 percent said they had been refused health insurance and 13 percent said they had been fired from their jobs because of the perceived risks attributed to their genetic status.

Currently, only 17 states have laws that protect against genetic discrimination in both employment and insurance services. About 15 states have no law prohibiting genetic discrimination in either area. But passing a patchwork of 50 separate state laws to stop an abuse that is national in scope will take years.

On the federal level, genetic anti-discrimination laws are totally inadequate. Right now, the Americans with Disabilities Act bars employment discrimination against people who have an injury or disease but can still do the job. But healthy people carrying genes that might them sick in the future may not be not protected from discrimination by employers or insurers because they are not currently disabled. We need to plug that hole now before genetic testing — and discrimination — becomes routine.

Further, any meaningful genetic privacy legislation must include the following protections:

• People need to be protected from the collection of their genetic information. Once this information is in an insurer or employer’s hands, it is virtually impossible to prevent its use. By prohibiting the collection of data, the temptation to use it to discriminate would be removed.
• Family history and other potential sources of genetic information are used by insurers and employers in a discriminatory way even more often than genetic testing. The definition of genetic information needs to protect these other kinds of information.

Scientists have nearly completed mapping the human genome and the brave new world of genetic identity is nearly upon us. We need to enact new legal protections against genetic determinism before it is too late.