Honoring the life and accomplishments of the actor Jimmy Stewart and the contributions he made to the Nation on the 100th anniversary of his birth.

Madam Speaker, pursuant to House Resolution 1156, I call up the bill (H.R. 493) to prohibit discrimination on the basis of genetic information with respect to health insurance and employment, with a Senate amendment thereto, and ask for its immediate consideration.

Madam Speaker, I have a motion at the desk.

Madam Speaker, I ask unanimous consent to yield my 10 minutes to the Chair of the Commerce Committee, Mr. Dingell.

I yield 3 minutes to the gentleman from California, the subcommittee Chair of Ways and Means, Mr. Stark.

(Mr. STARK asked and was given permission to revise and extend his remarks.)

I yield 3 minutes to the gentlewoman from Pennsylvania, Ms. Allyson Schwartz.

I yield 2 minutes to the gentlewoman from New Hampshire (Ms. Shea-Porter), a member of the committee.

Madam Speaker, I yield 3 minutes to the gentlewoman from California (Ms. Woolsey), a subcommittee Chair in the Committee on Education and Labor.

Madam Speaker, I yield 3 minutes to the gentleman from New Jersey (Mr. Andrews).

(Mr. ANDREWS asked and was given permission to revise and extend his remarks.)

I yield 2 minutes to the gentleman from New York (Mr. Engel), a member of the Energy and Commerce Committee.

I yield 2 minutes to the gentlewoman from California (Ms. Linda T. Sanchez), a member of the Education Committee.

I yield 2 minutes to the gentleman from Pennsylvania (Mr. Sestak), a member of the Education and Labor Committee.

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 wasn't intended to address or didn't 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 make-ups 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.

It's one thing to stand here and say we all agree today. But that wasn't 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 it's 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 we've 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.

Despite 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 II 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 II, including violations involving health benefits.

It is well settled in this country's 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 work-related 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.

Congresswoman Slaughter's staff, Michelle Adams, Cindy Pelligrini.

From Congresswoman Biggert's staff, Brian Petersen, Jaime Vickery.

And from Congressman McKeon's staff, Ed Gilroy and Jim Paretti.

From Congressman Dingell's staff, Pete Goodloe, Jeanne Ireland, Jessica McNiece, Gregg Rothchild, and John Ford.

From Congressman Frank Pallone's staff, Bobby Clark.

From Congressman Rangel's and Stark's staff, Cybele Bjorklund and Deb Mizeur for all of their assistance.

And in the Senate, from Senator Kennedy's staff, Dave Bowen, Portia Wu and Lauren McFerren.

And from Senator Snowe's staff, Bill Pewen.

And from Senator Enzi's 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 making 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, I'd 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.

Mr. Speaker, I also would be remiss if I did not thank Dr. Francis Collins for all of his work and assistance and guidance to the Congress on this matter and for everything else he does in such a wonderful fashion.

I yield back the balance of my time.

Mr. Speaker, on that I demand the yeas and nays.

Madam Speaker, I yield myself such time as I may consume.

Madam Speaker, I rise today in strong support of H.R. 493, the Genetic Information Nondiscrimination Act, which will prohibit health insurers and employers from discriminating on the basis of genetic information.

As many of my colleagues are aware, this legislation has been around for quite some time. I have been working on for it more than 7 years, and Congresswoman Slaughter has been working on it for more than 12 years. It's been a long road, and there have been

many times I thought this day would never come; but it is here.

Over this period of time, I have heard stories from my constituents and other individuals across the country about how genetic information was affecting their lives. Quite simply, they are stories of how our laws have failed to keep pace with medical science.

A breast cancer survivor in Chicago told me that even though her doctor recommended she undergo a genetic test to see if she had a 60 percent chance of developing ovarian cancer, which was quite common in the type of breast cancer that they had, she refused the test. She said I can't, I will lose my job.

It isn't that she didn't want to know; quite the opposite. She desperately wanted to know, but she feared if she had an adverse result from the test, she would lose her job. She is not alone; studies show that 85 percent of Americans fear employers will use genetic information to discriminate.

And then there is the woman from Missouri whose sister had suffered from cancer was cautioned by her doctor that undergoing genetic testing would cause her to lose her health insurance. She too chose not to undergo a genetic test. She is not alone; studies show that 84 percent of Americans express concern that health insurance companies would deny coverage based on genetic information.

And then there is the man with a family history of PKD, decided to take a genetic test but chose to use an alias and pay cash rather than bill his insurance just to keep the test out of his medical file. And he also is not alone; 26 percent of genetic counselors themselves admit that they would use an alias and 68 percent said they would pay for the test out of their pocket to protect themselves from discrimination.

The dean of a prominent university in Massachusetts told me that the fear of genetic discrimination was hindering clinical trials, slowing the development of life-saving techniques. At NIH, fear of genetic discrimination is the most common reason people cite for not participating in clinical trials on breast and colon cancers.

Madam Speaker, I have heard these stories over and over again from individuals wanting to know their genetic risk of developing diseases as far ranging as cancer, heart disease, diabetes, Parkinson's, Alzheimer's, Tay-Sachs, and PKD.

The sad fact is that these individuals are avoiding genetic tests that would empower them with the information that could save their lives.

So I want to let all people know that when the House passes GINA today, we will be just one step away, and that would be the signing by the President, from realizing the medical benefits of genetic testing. One step away from ensuring that people will be able to take a genetic test without risking their jobs and health insurance. One step away from ensuring that patients can stop using aliases and paying out of pocket to keep their genetic tests secret. One step away from ensuring that individuals will be able to participate in genetic clinical trials without fear of discrimination.

And the last step is the President's signature, and I am happy to say that he is expected to sign this bill.

Madam Speaker, it is clear to me that by passing GINA and freeing people from fear of genetic discrimination, we can unlock the tremendous life-saving and cost-saving potential of genetic research. More Americans will participate in genetic clinical trials, and more Americans will use these technologies to improve their health.

And with these improvements comes the prospect of dramatically reducing the chronic care costs that cripple our health care system. We now have more than 500 different health advocacy and business organizations supporting this bill. Recent surveys shows that 93 percent of Americans believe that employers and insurers should not be able to use genetic information to discriminate.

With numbers like these, it should be no surprise that the House passed this bill last April 420-3, and the Senate passed it last week 95-0, and the President is expected to sign this measure into law.

Madam Speaker, I reserve the balance of my time.

I have no further speakers, and I reserve the balance of my time.

I thank you, Mr. Chairman, for your kind words. And it's been a long road, but we're here, and with your help.

Just let me say that there's three benefits that are so important for this bill. Number one is that people will get a genetic test. And if it shows that they have a propensity for having some disease, they can then take preventive measures and take measures that are going to improve the quality of their life. And it's personalized medicine. People have got to take command of their medical lives.

Second of all, because people will take preventive measures, this is going to reduce the cost of health care. It's going to reduce the cost to businesses because their employees will be taking these preventive measures, and it's going to reduce the cost to health care providers because people, again, will be taking these measures.

And as I said before, through the clinical trials, it will increase the ability to find cures for so many diseases if people get into these.

So with that, I would really like to take a moment to thank Representative Slaughter, Chairman Slaughter of the Rules Committee one more time, Greg Walden of Oregon who has been a major sponsor of this bill, Congressman Andrews of New Jersey, who has been so helpful, and Mrs. Eshoo from California, who has been so involved. And then Senator Snowe, Senator Kennedy and Senator Enzi for all their hard work on this issue. It's truly been a pleasure to work with all of them.

I would also like to thank Mr. McKeon and Mr. Miller again, the chairman and ranking member of the Education and Labor Committee, for all their support. And then the other chairmen, Congressman Dingell and Congressman Barton of the Energy and Commerce Committee, and Mr. Upton of Michigan for coming down and working on this today. And then Chairman Rangel and ranking member McCrery of the Ways and Means Committee, and then Representative Camp for being the spokesman for them. I applaud them for all their efforts.

I would also like to thank former Speaker Newt Gingrich, who has been so supportive of this legislation. And I would be remiss if I didn't mention Sharon Terry and the Coalition for Genetic Fairness, as well as all of our other organizational supporters, for all their persistence and their expertise on this issue.

And Dr. Francis Collins of NIH for his testimony before all three committees in the House.

Finally, I have to thank the staff, all of the staff, who worked so tirelessly for years now behind the scenes on our behalf and put in long, long hours on this legislation. And in particular, my thanks go to Michelle Varnhagen and Jim Paretti from the Education and Labor Committee staff, and then Michelle Adams from Ms. Slaughter's staff, and Brian Peterson of my staff.

There's so many reasons why everybody should vote for this, and certainly having passed the House by 420-3 last April and the Senate 95-0, you say, This is a no-brainer; why didn't this happen a long time ago? And what's been alluded to is to get three committees in the House of Representatives to work on all of the issues, and they are so technical in how they relate to each other and how it relates to privacy and the other HIPAA and ADA and all of the things that had to be brought in here, I think everyone works so hard just to have a wonderful result. And it's no surprise that we're here, but it just took a long time.

With that, I would urge all my colleagues to vote for this measure.

I yield back the balance of my time.

Madam Speaker, I rise in support of this legislation, and yield myself such time as I may consume.

Madam Speaker, while it is not a perfect bill, I do believe it contains a number of important improvements over prior versions of this legislation, including that which I supported a little over a year ago on the House floor. More importantly, it marks a commitment by this Congress to ensure that the laws of the United States protect American workers and health care consumers from discrimination on the basis of their genetic makeup. Because that goal is so critical, I will vote for this bill today, and urge my colleagues to do likewise.

Before I turn to the substance of my remarks, I would like to commend my colleague and fellow Member on the Committee on Education and Labor, Representative Judy Biggert, for her years of work and dedication on this important issue. She has been persistent and effective on so many issues that have come before this committee and this Congress and she should be commended for adding this important bill to her list of legislative accomplishments. I also want to commend the gentlewoman from New York, the distinguished Chair of the Rules Committee, Ms. Slaughter, who has been Mrs. Biggert's partner in this effort.

As I noted during our committee's consideration of this bill last year, I believe the title of the legislation before us, the Genetic Information Nondiscrimination Act, embodies a proposition that all Members of our committee and indeed our Congress would endorse. Simply put, no employee should face discrimination on the basis of his or her genetic makeup or on any other characteristic other than his or her ability to do the job. Similarly, no employee should risk his or her health insurance status simply because of the possibility that they might some day develop an illness.

This bill was drafted with those fundamental principles in mind, and I believe that through the legislative process, we have taken steps toward ensuring that the bill we send the President today ensures that those principles are fulfilled, while minimizing the potential for unintended consequences.

I would take this opportunity to point out a number of improvements in the bill that I think merit attention.

Foremost, I am pleased that the bill we will send today to the White House for President Bush to sign embodies the same logic as a past executive order issued by President Clinton to ensure that this legislation would not inadvertently serve as a broad new Federal mandate requiring all insurance plans and employers to cover all treatments related to genetic-related conditions. That is exactly the type of unintended consequences we were seeking to avoid, and I am pleased we were able to work this out.

Second, I would highlight a provision in the legislation that ensures that employers who are currently subject to a number of confidentiality and recordkeeping requirements under law are not burdened by yet another redundant set of paperwork requirements. The bill before us today provides that, with respect to genetic information, if an employer maintains employee records and treats them as it does confidential medical records under the Americans With Disabilities Act, it is in compliance with this new genetics law.

Third, I applaud a significant improvement in the bill; namely, its extension of genetic nondiscrimination protection to all Americans.

One of the issues raised during our committee's consideration of the bill was concern that the bill's protections did not adequately extend to cover children in utero or at early stages of development, or in connection with in vitro fertilization and other technologies. I am very pleased that the final bill before us addresses this issue to the satisfaction of all Members on both sides of the aisle who worked in good faith to ensure the broadest protections possible.

The Senate amendment we consider today contains a number of other improvements over prior versions, including important provisions relating to those who participate in genetic clinical testing, providing for use of genetic information in matters of public health safety, and ensuring the most focused scheme of remedies possible. These changes represent issues we were able to work through over the past year and which demonstrate how the legislative process is meant to work. We were presented with well-intentioned legislation, heard meaningful testimony on it and its potential impact on employers and employees alike, raised and debated legitimate concerns, and worked through to bridge the gap between where we began and where we stand today.

I thank the staff from both sides of the aisle and in both chambers for making this a reality.

Before concluding my remarks, I would be remiss if I did not note for the record that I am still concerned that this bill is in some respects potentially overbroad. While we all agree with the goal of nondiscrimination I discussed earlier, the facts remain that we are poised today to adopt a sweeping new expansion to Federal Civil Rights scheme, the most expansive change since the adoption of the Americans With Disabilities Act of 1990.

As we send this bill to the President to sign into law, I would urge my colleagues to join me in remaining vigilant in the months to come in monitoring the administration of this new law to ensure that it addresses the problems it is intended to correct, and does not simply become yet another bureaucratic burden on employers or a lottery ticket for plaintiffs' lawyers.

In that same light, as courts and administrative agencies interpret and enforce these laws, I would urge them to heed the intent of Congress; namely, that this bill's most egregious penalties must be reserved for the most egregious violations of the law. If experience under this new law shows that this is not the case, I trust my colleagues will join me in supporting swift action to correct any mistakes we have made.

With that, I will conclude my comments. As I noted at the outset of my remarks, our actions today will ensure that the law of the United States protects American workers and health care consumers from discrimination on the basis of their genetic makeup, a goal I think is shared by every Member of this House. I urge my colleagues to support this legislation.

I yield the balance of my time to the gentlelady from Illinois (Mrs. Biggert) and ask unanimous consent that she be allowed to control the remainder of the time.

Madam Speaker, I yield myself 2 minutes.

(Mr. DINGELL asked and was given permission to revise and extend his remarks.)

Madam Speaker, today we consider H.R. 493, the Genetic Information Nondiscrimination Act. I first wish to congratulate Representative Slaughter for her leadership on this bill on which she has worked for better than 13 years. It has been a privilege to join her in that work, and I am delighted that it has brought us to today's vote.

Recent advances in research have made it possible to identify the genetic basis for human diseases. These breakthroughs, magnificent as they are, have opened the door to early detection and treatment of diseases and prevention strategies geared to a person's genetic makeup. At the same time, this information can also be used to unfairly discriminate against or stigmatize individuals when it comes to insurance and employment.

To protect individuals from insurance discrimination, H.R. 493 would prohibit health insurers, both in group and individual markets, from canceling, denying, refusing to renew or changing the terms or premiums of coverage based solely on genetic predispositions towards specific diseases.

Additionally, in order to protect individuals from employment discrimination, this bill would make it unlawful for employers or other hiring entities to use an individual's genetic information regarding hiring, firing, promotion or other terms and conditions of employment. The legislation requires that genetic information be treated as a part of the individual's confidential medical record and that employers maintain separate forms or files for any genetic information that they may obtain.

The House of Representatives passed this legislation a year ago with a strong bipartisan vote of 420-3. Unfortunately, the measure has been held up in the Senate, as usual. With these concerns now resolved, we are close to providing Americans the ability to undergo genetic testing that may indicate early treatment and prevention of diseases such as cancer, heart disease, diabetes and Alzheimer's, without fear of losing their health insurance or affecting adversely the conditions of their employment.

I yield myself 1 additional minute.

The bill currently before us includes clarifying language intended to ease the concerns of some of my colleagues and is identical to the version passed by the Senate last week. These changes include a firewall between title I and II of the bill. The modifications clarify that employers are not liable for health insurance violations under civil rights laws unless the employer has separately violated a provision of title II governing employers.

The changes also make it clear that while individuals are protected from discrimination based on genetic predisposition, the authority of insurance companies to base coverage and pricing on the actual presence of a disease is not affected.

These changes broaden the base of support for the bill and allow us to bring it to the House floor with the expectation that it will be signed into law by the President.

I thank my colleagues on both sides of the aisle for their hard work on this bill and for coming together to make this legislation a reality.

Madam Speaker, I ask unanimous consent to yield back the remainder of my time to my distinguished friend from California, the Honorable George Miller, chairman of the Education and Labor Committee, and that he be permitted to yield that time in accordance with his whims.

I yield myself such time as I may consume.

Madam Speaker, I rise in strong support of this legislation, and want to commend all those that were instrumental in getting its passage to the floor, particularly my good friend, Judy Biggert from Illinois.

We have made some wonderful advances in health care research over the number of years. I can remember helping to lead the charge with my colleague, Mr. Waxman, on a bipartisan bill to double the money for the National Institutes of Health back in the nineties, and we had a similar effort in the Senate between John McCain, the Republican leader there of that same issue, and Paul Wellstone, a dear colleague who is no longer with us. But, together we passed that bipartisan legislation. And with those advances, of course we have to look at other things that are pertinent, too, and that is why this Genetic Information Nondiscrimination Act is so important.

I remember traveling to the University of Michigan and meeting with one of the researchers there that in fact had received an NIH grant; and he just weeks before, because of that grant, had identified the breast cancer gene that strikes one in eight women across America. He was excited. And it wouldn't have happened without that NIH money; but with that discovery, it is clear that we have to in fact protect that genetic information from being discriminated against by who knows who.

And I would say that, thanks to my colleagues, Mr. Deal, the ranking member on the Health Subcommittee who is in a hearing right now, and Joe

Barton, the ranking member, that we have all made advances and worked closely with Chairman Dingell to mitigate what we believed were some significant problems with the legislation as it was introduced.

Among other items, we wanted to make sure that any use of information by certain entities regulated under the Health Insurance Portability and Accountability Act not also be regulated by the Equal Employment Opportunity Commission under title II of the bill. Such dual regulation of the use of information would have been highly disruptive and certainly inappropriate.

We also made numerous clarifications to make sure that the new regulatory scheme did not disrupt reasonable and needed activities by health plans to improve health care, coordinate benefits, process benefits, or educate beneficiaries. It is important for the Congress to be mindful that we are not writing on a blank slate each and every time that we launch one of these new regulatory and liability schemes. And I certainly join many here that are satisfied that these important improvements made by the Committee on Energy and Commerce are preserved in the bill. I want to commend the bipartisan and bicameral discussions that led to this compromise, and I would urge that we all support it when a roll call vote comes.

At this point, I would yield the balance of our time that our committee controls to my friend from Illinois (Mrs. Biggert).