Date: 2008-05-01
Speaker: GEORGE MILLER (democrat)
Chamber: H
State: California

I yield myself such time as I may consume. Mr. Speaker. today we are celebrating. or we will shortly with a vote on the Genetic Information Nondiscrimination Act. known as GINA. And today we celebrate it with a great sense of unanimity and agreement about this legislation. But that clearly was not always true over more than the past decade. This legislation has been controversial to some. It has had a shifting body of opponents to it over those many years. There are many who tried to ascribe attributes to this legislation that either wasnt intended to address or didnt exist at all. But the opposition was formidable. But when we celebrate the passage of this legislation today. we must also celebrate the spirit of two women -in the House of Representatives that persevered through all of the political debate. as hot it was from time to time. through all of the controversy. through much of the ignorance and misinformation about the legislation. but who. throughout that entire decade. understood the promise of this legislation. both to those who would not be discriminated against in the future. but also the promise in terms of medical research and information that would become available to promote. not only cures and treatment. but greater scientific understanding of the genome and our makeups and its impact on our health. And those two women were Congresswoman LOUISE SLAUGHTER from New York. and our colleague who is with us in the Chamber today. JUDY BIGGERT from Illinois. Its one thing to stand here and say we all agree today. But that wasnt the case. and that was what they kept pushing against yeAr after year to get the Congress to understand the importance of this legislation. We come to that understanding rather late. when you consider that many of the States have taken the steps. many Nations have taken this step. but its terribly important that we do it so people will be assured that no worker will be discriminated against because of his or her genetic information. As I mentioned. 41 States have already led the way in passing laws to prohibit discrimination to individual health insurance markets. 34 States have passed laws to prohibit employers from discriminating in the workplace. And the Federal Government has banned discrimination against Federal Government employees. Every American deserves this protection. In the last two decades weve seen incredible scientific advances in the diagnosis and the treatment of once untreatable. undetectable conditions. Scientists now have the incredible ability to identify genetic markers for disease that could and may never occur. Genetic testing can also help prevent diseases by identifying them early. Despit6 this amazing potential of genetic testing. advancements have been stifled out of fear of what some may do with the results of those tests. Many Americans forego testing because of that fear. the fear of losing their jobs. the fear of losing their health insurance. We pit that against the knowledge. the discovery and the treatment that would have been possible to those individuals. but the fear prevented them from coming forward. And this is not an isolated fear. A 2006 research study showed that 85 percent of the respondents believe that without protections. employers would use genetic information to discriminate. 64 percent believe that insurers would use the information to deny critical coverage. The Genetic Information Nondiscrimination Act is clear. Title I of the bill prohibits group health plans and insurers from collecting or requesting genetic information with narrow exceptions. It also protects the privacy of this personal information. Title H of the bill prohibits employers from collecting or using their employees genetic information. It also prohibits employers from discriminating against employees in hiring. firing and other terms -of conditions of employment based upon the genetic information. This final bill makes it clear that. even though employers may not be held accountable for violations committed by health plans under title I. employers remain fully liable for any violations of title H. including violations involving health benefits. It is well settled in this countrys employment discrimination laws. such as title VII. the Age Discrimination Employment Act and the Americans with Disabilities Act. that it is unlawful for employers to discriminate against employees in their health benefits. We intend for the courts to continue to interpret employer obligations under GINA similarly to all other civil rights laws. GINA will protect workers like David Escher. a former worker at the Burlington Northern Santa Fe Railroad. who discovered his employer was trying to prove his injury was caused by a genetic disorder rather -than workrelated injury. This is precisely the type of discrimination and misuse of genetic information that we seek to prohibit in this bill. The protections provided by GINA are long overdue. and Representatives SLAUGHTER and BIGGERT have fought. over this last decade. for these important changes. these important provisions in the law. And I want to thank them for all of their hard work. I also want to take a moment to thank the members of my staff. Michelle Varnhagen. Mark Zuckerman. Brian Kennedy. Jody Calemine and Michael Gaffin for all of their efforts. From Congressman ANDREWS staff. Carlos Fenwick. . I... Congresswoman SLAUGHTHRS r4 staff. Michelle Adams. Cindy Pelligrini. :.. . From Congresswoman BIGGERTS staff. Brian Petersen. Jaime Vickery. And from Congressman MCKEONS staff. Ed Gilroy and Jim Paretti. From Congressman DINGELLS staff. Pete Goodloe. Jeanne Ireland. Jessica McNiece. Gregg Rothchild. and John Ford. From Congressman FRANK PALLONES staff. Bobby Clark. From Congressman RANGELs and STARKS staff. Cybele Bjorklund and Deb Mizeur for all of their assistance. And in the Senate. from Senator KENNEDYS staff. Dave Bowen. Portia Wu and Lauren McFerren. And from Senator SNOWES staff. Bill Pewen. And from Senator ENZIS staff. Ilyse Schuman and Keith Flannagan. And legislative counsel. Ed Grossman. Larry Johnson and Henry Christrup. for all of their assistance and all of the effort that they put in to makipg the changes and the distinctions between the actions in the House and the Senate. and all of the controversy that this brought with them. With that. Id like to reserve the balance of my time so that Ms. BIGGERT may make her closing remarks. And again. I want to thank her so much. Her membership on our committee makes us very proud. And her political toughness to see this through to the end. along with LOUISE SLAUGHTER. is a wonderful story that we celebrate also with the passage of this legislation. I reserve the balance of my time.