Providing for consideration of the Senate amendment to the bill (H.R. 493) to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.

Madam Speaker, by direction of the Committee on Rules, I call up House Resolution 1156 and ask for its immediate consideration.

Madam Speaker, for the purpose of debate only, I yield the customary 30 minutes to the gentleman from Texas (Mr. Sessions). All time yielded during consideration of the rule is for debate only.

I yield myself as much time as I may consume and ask unanimous consent that all Members be given 5 legislative days in which to revise and extend their remarks on House Resolution 1156.

Madam Speaker, H. Res. 1156 provides for consideration of the Senate amendment to H.R. 493, the Genetic Information Nondiscrimination Act. The rule provides 1 hour of general debate on the motion with 20 minutes each controlled by the Committee on Education and Labor, the Committee on Energy and Commerce, and the Committee on Ways and Means.

Madam Speaker, the story of humanity is defined by extraordinary achievements that centuries later are looked upon as having impacted the course of human history. Five years ago, we saw one of these distinguishing achievements: the mapping out of the human genome, a discovery that pries open the door of possibility and presents an opportunity to advance the human race.

This breakthrough in the field of genetics joins the ranks of momentous discoveries that have changed the face of medicine and science for centuries to come, like the discovery of the polio vaccine so many years ago.

Last week, Senator Kennedy on the Senate floor noted that the mapping of the human genome ``may well affect the 21st century as profoundly as how the invention of the computer or the splitting of the atom affected the 20th century.''

However, Madam Speaker, such discoveries and achievements do not automatically lead to these extraordinary breakthroughs. In order for us to fully reap the benefits, we must ensure that our social policy keeps pace with the advancement of our science.

That is precisely why I rise today in support of the Genetic Information Nondiscrimination Act. It has been 13 years in the making, and I'm pleased that the House of Representatives is once again considering the bill today, hopefully for the last time, so we may send it to the President to sign into law.

While I'm pleased we're taking it up, I'm saddened that so much time has been lost and that the march toward progress and discovery has been slowed.

The Genetic Information Nondiscrimination Act is the culmination of a broad and bipartisan effort to prohibit the improper use of genetic information in workforce and health insurance decisions.

It prohibits group health plans and health insurers from denying coverage to healthy individuals or charging higher premiums based solely on a genetic predisposition to maybe develop a disease in the future.

Furthermore, it bars employers from using one's genetic information when making hiring, firing, job placement or job promotion decisions.

Madam Speaker, the bill has been described as the first civil rights legislation of the 21st century. I think that assessment is correct because, with the exception of trauma, everything that happens to a person's body has a genetic component. From the color of our eyes to our height, to the illnesses and disorders we are susceptible to, everything happens because of our genes.

No one, not a single living human being, has perfect genes. In fact, each one of us is estimated to be genetically predisposed to between 5 and 50 serious disorders.

The good news is that since the sequencing of the human genome was completed in April, 2003, thanks to Dr. Francis Collins, who I am happy to say is in the gallery today, researchers have identified genetic markers for a variety of chronic health conditions and increased the potential for early treatment and the prevention of numerous genetic- based diseases. There are already genetic tests for over 1,000 diseases, and hundreds more are under development.

Let me mention just two of them. Just this week we heard from newspapers that in London and work being done in Pittsburgh, and I believe it's the University of Pennsylvania, has restored some eyesight to people who were disposed to a genetic disease that harmed their vision as children. To be able to restore eyesight is something none of us had ever dreamed of being able to do. But by injecting genetic material into the back of the eye behind the retina, they have received some sight. They believe that once they are able to do this in younger children and be able to increase the dose that the success rate will be extremely high, and that, in itself, is such good news.

Also yesterday the New York Times reported that the gene has been isolated for osteoporosis and for fragile bones. I remember when we were fighting for the Office of Women's Health, the statistic we used for osteoporosis was that we spent between $20 and $30 billion a year, and this was years ago, 10 or 15, all that much money to treat osteoporosis. At that point we had no treatment for it. We just tried to do the best we could. We have over time achieved some treatments for osteoporosis, but think what would happen if once we find that gene, we are able to manipulate that gene or change it and prevent osteoporosis altogether?

The great thing about this science is the limitless possibility to cure human conditions without long hospital stays, without invasive surgeries, and there are possibilities there for an entirely new way for us to provide health care.

Now, consider if these tests we know that can tell a woman if she has a family history of breast cancer, if she has a genetic predisposition. For at least the 10 years, I have been told by women

who are in that condition and also by their physicians that they have recommended to them that until a bill such as the one we are passing today becomes law in this country, they should not put at risk their health insurance, many of them who are the sole provider for health insurance for their families, or their jobs. We believe, the estimates are, that about 22 percent of Americans have already been discriminated against. We have numerous cases of people who have lost their jobs. So the most important thing to show what rank discrimination that has been is that having the gene is only predictive. It does not say that you are doomed to have it. Indeed, it could be 20 or 30 years away, if at all. To deny a person health insurance and employment on that kind of proposition is nothing but discrimination.

We know now that numbers of people are going to go out to get the tests that they need to be able to plan for the rest of their lives, constituents that we have all had with Alzheimer's who want to plan for their future. So in addition to improving health care for millions, it's going to give the scientists and our medical researchers invaluable insight on how to combat and even cure diseases in the future.

I don't think we're going to realize what a wonderful day this is for us until someone in your family is faced with this and that you can have a cure for them. It is totally remarkable. I honestly believe that, being here in Congress for 22 years, which has meant so much to me and for which I am so grateful to my constituents, that this piece of legislation and what we have done here is the most important thing that I shall ever do in my life and certainly in my time as a legislator.

I'm enormously grateful to everybody who has supported this and all the people who have worked on it all these many years, never getting discouraged, always working every 2 years, refiling the bill, getting all the cosponsors, and fighting for passage. That wonderful day now has come. I especially want to give my thanks to my colleague Judy Biggert for all the wonderful work that she has done.

Madam Speaker, to give you an idea of the potential that exists, consider that genetic tests can tell a woman with a family history of breast cancer if she has the genetic mutation that causes it long before the cancer develops.

Armed with this information, this woman can make important health decisions on when to engage in preventative care and when to seek early treatment.

And in doing so, we can cut down on hospital stays and invasive surgeries while allowing medical treatments to be more personalized.

Madam Speaker, in addition to improving health care for millions of individuals, genetic testing gives our scientists and medical researchers invaluable insight into how to combat and, perhaps, even cure these diseases in the future.

However, for the potential of genetic research to be realized, we need to make genetic testing something that is commonplace, rather than something that is feared.

Unfortunately, because no one has perfect genes, no one is immune to genetic discrimination. And the threat of discrimination is holding men and women back from participating in clinical trials that will lead to the medical breakthroughs of the 21st Century.

Madam Speaker, their fears are not unfounded. Genetic discrimination is real and is happening today.

A 2001 survey of employer medical testing practices found that 1.3 percent of companies test employees for sickle cell anemia, 0.4 percent test for Huntington's Disease, and 20.1 percent ask about family medical history.

During the 1970s, many African Americans were denied jobs and health insurance based on their carrier status for sickle cell anemia.

More recently, many have heard about the 2002 Burlington Northern Santa Fe Corporation case where the company paid a $2.2 million settlement after it tested its employees for a genetic marker dubiously associated with carpel tunnel syndrome.

In North Carolina, a woman was fired after a genetic test revealed her risk for a lung disorder even though she had already begun the treatments that would keep her healthy.

There was even an instance of an adoption agency refusing to allow a woman at risk for Huntington's disease to adopt a child.

These abuses have only fed the public fear of genetic discrimination, leading many Americans to forgo genetic testing even if it may help avert premature death.

Sixty-six percent of Americans are concerned about how their genetic information would be stored and who would have access to it.

Seventy-two percent of the American public believes that the government should establish laws and regulations to protect the privacy of one's genetic information.

Madam Speaker, genetic discrimination is wrong on two fronts.

First, it is critical to remember that simply carrying a given genetic mutation does not guarantee that one will develop the disorder. It merely confers a level of risk upon the carrier.

Given that scientists cannot accurately predict when or whether a carrier will develop a genetic disorder, it is illogical to allow this information to be used by health insurers and employers for discriminatory purposes.

Secondly, and very importantly, if individuals do not participate in clinical trials, we will never be able to reap the real benefits of genetic science.

In a 2003 editorial, Dr. Francis Collins, head of the National Human Genome Research Institute, and James Watson made a persuasive argument in favor of non-discrimination legislation like GINA.

They wrote, and I quote: ``Genetic discrimination has the potential to affect people's lives in terms of jobs and insurance, but there is another dimension as well: It can slow the pace of the scientific discovery that will yield crucial medical advances.'' End quote.

Madam Speaker, as I have mentioned, this legislation began 13 years ago and has had quite a ride going back and forth between the House and the Senate.

I would like to take a moment to speak briefly about the evolution of this bill and the agreements that we have made so that it could end up here today.

In order for us to move forward, we addressed some of the concerns about the legislation, specifically about the threat of frivolous lawsuits.

Several years back, we made sure that if an employer inadvertently receives a person's genetic information, they could not be sued unless they used that information to discriminate against the employee.

Within the past few weeks, we were able to work out a clarification regarding the so-called ``firewall'' issue.

This agreement makes both sides happy and still preserves 40 years of civil rights law by ensuring that employers are held accountable under civil rights remedies.

In addition, this bill requires that before an individual can go to court, the EEOC has to review their claim and determine if it has merit.

I am very pleased that we were able to work together to ensure the success of this critical legislation.

And, Madam Speaker, while there have been some opponents to this bill over the years, there have mostly been allies.

I hold here in my hand 514 letters of support from a wide spectrum of health, scientific, and medical-related organizations.

Here in Congress, we have over 220 cosponsors, both Democrats and Republicans.

Just over a year ago, this body passed GINA 420-3, and last week, the Senate once again passed this bill unanimously by a vote of 95-0.

Even the White House has come out in support of genetic nondiscrimination legislation.

Before I close, I want to take a moment to thank the lead Republican cosponsor of this bill, Congresswoman Judy Biggert. Without her and her staffs hard work, today would simply not have been possible.

I also want to thank Congresswoman Anna Eshoo for her strong advocacy on behalf of this bill over the years.

I want to thank Senators Kennedy, Snowe and Enzi for championing this bill through the Senate.

And I especially want to thank Dr. Francis Collins for his support. His testimony last year before three House Committees should have swayed even the firmest nonbelievers that genetics has the potential to change our health care system as we know it.

I am so proud to have played a role in making this legislation possible--legislation that not only will stamp out a form of discrimination, but will allow us to realize the tremendous potential of genetic research.

By passing this legislation today, we open the door to usher in a whole new era of health care and change the course of human history.

Millions of Americans have waited far too long for these protections, but I'm so pleased the wait is almost over.

I urge all my colleagues to support this bill once again.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, I am pleased to yield 2 minutes to the gentleman from Wisconsin, Dr. Kagen.

Madam Speaker, I am pleased to yield 3 minutes to the gentlewoman from Florida, a member of the Rules Committee, Ms. Castor.

Madam Speaker, I am pleased to yield 2 minutes to the gentleman from New Jersey (Mr. Andrews) and thank him for his help.

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

Madam Speaker, I am pleased to yield 2 minutes to the gentlewoman from California, a member of the Energy and Commerce Committee, as Mr. Andrews is, Ms. Eshoo, who saw me through many a bad moment on this bill, and to whom I am extremely grateful.

I have no further requests for time. Let me ask my colleague if he is prepared to close.

Madam Speaker, I really don't want to do this, because I don't understand this previous question on a bill of this importance, but I do need to say, just for the record, that Speaker Pelosi has brought to the floor three times bills to lower gas prices; to crack down on price gouging, on holding OPEC accountable, and repealing the subsidies for profit-rich Big Oil. Every time, almost unanimously, the Republicans in this House voted against it. She has called to stop filling the Strategic Petroleum Reserve, and she has asked for a study on price gouging.

Give us some help, for heaven's sake, so we can get this done. In the previous 7 years there was nothing here at all, except more and more subsidies to Big Oil.

I urge a ``yes'' vote on the previous question and on the rule.

I yield back the balance of my time, and I move the previous question on the resolution.

The previous question was ordered.

Madam Speaker, I do want to thank my friend from New York, the gentlewoman and chairman of the Committee on Rules, for yielding me this time to discuss this proposed rule for consideration of H.R. 493, the Genetic Information Nondiscrimination Act.

Like my colleague, I too rise in support of this rule which would allow the

House to agree with the Senate compromise and pass H.R. 493, the Genetic Information Nondiscrimination Act of 2008, or GINA.

As the gentlewoman knows, this legislation has a long history. She's worked on it for a long, long time, as we heard in testimony given to the Rules Committee yesterday and the accolades that were given the gentlewoman for her support of this, as well as the gentlewoman from Illinois (Mrs. Biggert). First introduced in 1995, it has been cosponsored by 224 of our colleagues in this Congress. The House overwhelmingly passed this legislation last April, and with the Senate's recent approval and President Bush's pledged support, I look forward to seeing this legislation signed into law quickly.

Madam Speaker, genetics are extremely important to determining the health of every single individual. Each of us carries a handful of genetic anomalies, some of which might cause us to be affected by genetic conditions or affect the health of our children. There are currently 1,200 genetic tests that can diagnose thousands of health conditions. This number has grown exponentially from just around 100 genetic tests a short decade ago.

Every day scientists are learning more about the genetic causes of many devastating diseases. Stopping these debilitating illnesses will require the voluntary participation of hundreds of thousands of Americans in the clinical research area needed to identify, test, and approve effective treatments. This information is invaluable to managing our country's health and bringing down the overall cost of health care.

Currently, a few States provide protections for genetic information, but most provide none. This leaves Americans with little to no certainty about how their genetic rights are protected from State to State.

Additionally, genetic information is not properly covered under the current HIPAA regulations. It is necessary for Congress to provide legal protection for genetic information and clinical trials so Americans can get tested for health care concerns without fear of misuse or discrimination. This legislation ensures that all will be protected.

Currently, the fear of misuse of genetic information is preventing people from getting these important genetic tests done. The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike. Lack of testing denies individuals important medical information that they could otherwise use to be proactively managing their health with their doctor. The information garnered by these tests also helps doctors to prescribe treatments and lifestyle changes with increased success. The same information can be used by researchers to effectively create targeted drugs and develop treatments.

Fear of discrimination has also caused a large number of people to opt out of clinical trials. With fewer participants in clinical trials, we will see slower development of treatments and beneficial drugs. In addition, clinical trials provide patients in late stages of the diseases with access to breakthrough treatments that might otherwise be unavailable.

This House has correctly recognized this issue by protecting those who obtain genetic tests in addition to those who volunteer to participate in clinical research for genetic diseases. I would like to commend my colleagues Sue Myrick, Kenny Hulshof, and Dr. Tom Price for leading the efforts to protect the importance of these clinical trials.

But none of this would be any good today, Madam Speaker, if the American public did not overwhelmingly support the Genetic Information Nondiscrimination Act. About 93 percent of Americans believe that if someone has a genetic test, their employer should not have the right to know the results. Republicans and Democrats want to see their genetic information protected.

I rise in support of this rule and the underlying bill and look forward to its passage.

I once again want to thank the gentlewoman from Illinois (Mrs. Biggert) and the gentlewoman from New York, the chairman of the Rules Committee, for their hard work.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, at this time I would like to yield 10 minutes to the lead cosponsor from the Republican side, the gentlewoman from Illinois (Mrs. Biggert).

Madam Speaker, I would like to notify the gentlewoman from New York that we do not have any additional speakers at this time, so we will continue to reserve our time.

We will reserve our time.

Madam Speaker, we will reserve our time.

Yes, ma'am, I am.

Madam Speaker, today I will be asking each of my colleagues to vote ``no'' on the previous question to this rule. If the previous question is defeated, I will amend the rule to make it in order for the House to consider any amendment that would actually do something to reduce our high gas prices that we have in this country, to help consumers, and to require the Speaker of the House to submit her secret plan to lower gas prices.

Back on April 24, 2006, over 2 years ago, Speaker Pelosi issued the following statement, which I quote, ``With skyrocketing gas prices, it is clear that the American people can no longer afford the Republican rubber stamp Congress and its failure to stand up to Republican big oil and gas company cronies. Americans this week are paying $2.91 a gallon on average for regular gasoline, 33 cents higher than last month, and double the price that it was when President Bush first came into office.''

Madam Speaker, most Americans would consider it a blessing if we were only paying $2.91 today for a gallon of gasoline and the only thing they really couldn't afford is this head-in-the-sand Democrat Congress that refuses to consider or to do anything to solve the problem.

In that same press release, Speaker Pelosi went on to claim, ``Democrats have a commonsense plan to bring down skyrocketing gas prices.''

Well, I am not sure what they are waiting for, because even after passing the no-energy energy bill through the House a number of times, the cost of the Pelosi premium price increase continues to rise, with the average cost of gasoline over $3.62, hitting consumers at the pump every time they go fill up their cars.

In fact, Madam Speaker, as yesterday's Politico article Gas Prices Fuel Effort to Jam GOP makes clear, rather than seizing the opportunity to create opportunities to do something about these high gas prices, to bring in commonsense, bipartisan, supply-side solutions to the problem that help consumers, the Democrats are using them as a wedge issue, as they see it, to score political points, which does nothing to bring down the high cost of gasoline and only contributes to the Congress' abysmal low ratings.

Madam Speaker, I would suggest to you that it really might secretly be this secret plan. This secret plan, even though Speaker Pelosi said it was to bring down gas prices, I think it is all about raising gas prices closer to $5 a gallon. Of course, we know what this does. This causes an American transfer of payments to overseas places, just like Dubai. It is American consumers that are paying for and building Dubai. And the reason why is because the Democratic policies have taken off- limits the opportunity for Americans to be self-independent, because we can't do our own drilling in this country, where billions of barrels of oil reside.

By voting ``no'' on this previous question, Members can take a stand; a stand against the statements that we have heard about trying to increase gasoline prices, but while only taxing oil companies.

We demand to see this ``private'' and ``secret'' plan to reduce gas prices that the Democrats have been hiding from the American people since taking office and control of Congress. I for one would love to see this plan. But I am afraid that, much like their other campaign promises to run the most open, honest and ethical Congress in history, it simply does not exist.

Madam Speaker, American consumers cannot handle the high prices at the pump. We are demanding to know what this secret plan is to reduce gasoline prices below the level of 2 years ago. We need help. Americans all across this country will stand behind those that vote ``no'' to do something now about the problems, rather than trying to blame it on somebody else. If it was Congress' problem 2 years ago, it certainly should be Congress' problem today.

Madam Speaker, I ask unanimous consent to have the text of the amendment and extraneous material placed in the Record just prior to the vote on the previous question.

I encourage a ``no'' vote on the previous question, and I yield back the balance of my time.

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.