May 1, 2008 – 7:57 p.m.
The House cleared legislation Thursday that would prevent discrimination based on genetic information, but a last-minute procedural glitch had to be corrected before the measure could be sent to President Bush for his signature.
House Rules Chairwoman
“Five years ago, the mapping of the human genome pried open the door of possibility and presented us with the opportunity to advance the human race,” said Slaughter, D-N.Y. “In order for us to fully reap the benefits we must ensure that our social policy keeps pace with the advancement of science.”
Genetic discrimination is mostly an abstraction; there are few documented incidents of people suffering discrimination because of their DNA. But fear of genetic discrimination, lawmakers and health experts say, is real and is hampering both public health and medical research.
Studies have shown that because they fear that the results might be used against them, some people forgo genetic tests that could tell them whether they are susceptible to diseases such as cancer. Others use aliases and pay for the tests themselves, rather than billing their insurance companies.
“Studies show that 85 percent of Americans fear that employers will use genetic information to discriminate,” said Rep.
Slaughter’s bill, its proponents hope, will sweep away those concerns.
“With this measure of reassurance in place, we expect more Americans will participate in genetic research and accept genetically directed strategies for treatment and prevention that will ultimately reduce the tremendous burden of heart disease, stroke and many other diseases in the U.S.,” said Dr. David Herrington, a professor of cardiology at Wake Forest University, speaking for the American Heart Association.
For years, under Republican-controlled Congresses, business lobbyists led by the U.S. Chamber of Commerce kept Slaughter’s bill bottled up. In 2003, the Senate passed a version by
The legislation almost became law in late 2007 as part of an appropriations bill (PL 110-161).
Chamber officials have said it is not the bill’s intent they oppose — genetic discrimination should be outlawed, they say. But they have said they are concerned by the bill’s scope; if it became law, businesses fear they could run afoul of the measure and face substantial financial penalties for even the inadvertent collection of genetic information from their employees.
“Although important improvements have been made at every stage of the legislative process, we still have significant remaining concerns,” said Michael Eastman, director of labor policy for the Chamber. He said his group still opposes the bill because its financial penalties are too steep, it would not supersede state laws on genetic discrimination, and it does not provide enough exceptions for employers to collect genetic information for routine business practices.
Up until last week, the business community had stopped the bill in the Senate, where
But proponents still had to overcome one more concern first expressed by the White House last week: The administration wanted language that would allow the military to collect genetic information in order to identify human remains.
They scrambled to respond: After clearing the bill, the House passed a resolution (
A White House spokeswoman said it isn’t yet clear when President Bush will sign the measure.


