ACLU Urges Senate to Take Immediate Action To Protect Against Genetic Discrimination

FOR IMMEDIATE RELEASE

WASHINGTON — With the map of the human genome nearly completed, the American Civil Liberties Union today urged the Senate to take immediate action to protect all Americans from genetic discrimination.

“This scientific breakthrough should be a cause for celebration, but instead many people are scared that genetic tests will be used against them,” said Ronald Weich, a legislative consultant to the American Civil Liberties Union.

“No one should lose a job or insurance policy because of a genetic predisposition,” Weich added. “Americans should be judged on their actual abilities, not their potential disabilities.”

At a hearing held today by the Senate Health, Education, Labor and Pensions Committee, Senator Tom Daschle (D-SD) urged his colleagues to adopt legislation that he and Senator Ted Kennedy, (D-MA), have introduced to ban genetic discrimination by both health insurers and employers. The ACLU strongly supports the Daschle-Kennedy legislation, “The Genetic Nondiscrimination in Health Insurance and Employment Act” (S. 1322), saying it would comprehensively address the serious threat to civil liberties posed by genetic technology.

The threat to civil liberties became more pronounced with last month’s announcement that the two groups that have been competing to be the first to complete the mapping of the human genome have completed the first “rough draft” of humans’ genetic code.

“Congress must catch up to the scientists that made these tremendously important discoveries,” Weich said. “We need 21st century legislation that allows Americans to take advantage of this cutting edge research without fear of losing their health insurance or being fired from their jobs.”

The ACLU said that the threat of genetic discrimination leads individuals to decline genetic screenings and other health services to avoid revealing information that may be used against them. For example, the Journal of the American Medical Association has reported that only 57 percent of women at risk for breast cancer seek genetic testing, and 84 percent of those who decline the test do so because they fear genetic discrimination.

“Americans should not be forced to live in fear that taking a test that can save their lives will result in losing their jobs or their insurance,” Weich said. He noted that genetic tests can only indicate that someone has a predisposition to a health condition, not whether or not he or she will actually ever develop the condition.