Clinton Orders Genetic Privacy Rules
In his first executive order of the 21st century, President Clinton addressed a truly 21st century problem: genetic privacy.
CBS News Chief White House Correspondent John Roberts reports the president barred federal agencies from refusing employment, promotion or benefits to any federal employee found to have a genetic predisposition to disease. The measure also tightens the rules regarding testing and the disclosure of genetic information.
"We must not allow advances in genetics to become the basis of discrimination against any individual or any group," the president told an American Association for the Advancement of Science audience Tuesday.
Clinton expressed his amazement at the rapid progress science has made in understanding human genetics and said it is time to consider the consequences.
"This extraordinary march of human understanding imposes on us a profound responsibility to make sure that the age of discovery can continue to reflect our most cherished values," he said. "We must protect our citizens' privacy -- the bulwark of personal liberty, the safeguard of individual creativity."
Clinton's decision was implemented Tuesday in an executive order based on legislation sponsored by Sens. Tom Daschle, D-S.D., and Edward M. Kennedy, D-Mass., and Rep. Louise Slaughter, D-N.Y.
The action, which carries potentially far-reaching medical and financial consequences, is good news for Mark Covington. He and six colleagues filed a lawsuit against the Department of Energy's Lawrence Berkeley Laboratory after it was discovered that in their pre-employment physical exams, they were secretly screened for hereditary diseases.
Covington asks, "What was it actually used for, if not for my benefit? It seemed a little subversive."
In just the past few years, scientists have discovered genes that earmark everything from breast and colon cancer, to possibly suicide. Even healthy people carry at least 12 defective genes. Many people who could benefit from genetic testing avoid it because of fears the results could be used against them.
"Genetic discrimination is one of the greatest fears of both patients and providers of genetic counseling," explains Yale University genetic counselor Ellen Matloff. "And we are very relieved to see that our legislators recognize these issues and are taking steps to protect us."
With the project to decode the entire human genome racing to completion, some lawmakers are attempting to extend discrimination protections to the private sector. "I think it sends a powerful message to the private sector about how they'll need to deal with the advances in science," White House press secretary Joe Lockhart said.
A bill pending in Congress would do that, but Republicans on the hill said Tuesday it's doubtful that it will receive consideration this year.
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