Gift of Life Congressional Medal Act of 2006

Mr. President, I ask unanimous consent that the Senate now proceed to the consideration of Calendar No. 3, S. 306, the Genetic Information Nondiscrimination Act of 2005; provided that there be 90 minutes of debate equally divided between the chairman and ranking member of the HELP committee; provided further that the only amendment in order, other than the committee-reported amendment, be a substitute which is at the desk, and following the use or yielding back of time the substitute amendment be agreed to, the committee-reported amendment, as amended, be agreed to, the bill, as amended, be read a third time, and the Senate proceed to a vote on passage without any intervening action or debate at a time determined by the majority leader, after consultation with the Democratic leader.

Mr. President, this is a bill that has been about 5 years in the works. It was introduced by Senator Snowe, who was joined by Senators Frist, Gregg, Kennedy, myself, and others. It has been introduced a number of times, but in 2003 this bill was passed by a vote of 95 to nothing. The only difference between that bill and the one before you today is deletion of a provision that makes conforming changes to the Internal Revenue Code to ensure that a small number of health insurance plans, known as church plans, do not discriminate on the basis of genetic information.

We are removing the church plan provision because at the last minute yesterday a concern was raised that the language caused what is called a blue slip problem, which relates to the constitutional requirement that revenue measures originate in the House. There is considerable disagreement as to whether the church plan provision has a revenue impact and whether there is, in fact, a blue slip problem. In my opinion, there is no jurisdictional or constitutional problem with this simple conforming amendment.

The Health, Education, Labor, and Pensions Committee in the Senate took great pains to draft the bill within its own jurisdiction and was disappointed that these concerns were raised at this late date. In the interest of moving this bill and creating the important protections that it guarantees, we are removing the questioned language.

It is my understanding and hope that the House of Representatives will address the question of church plans when it takes up genetic information nondiscrimination legislation. Certainly no one believes that health insurance plans run by churches and other religious organizations should discriminate against individuals on the basis of genetic information. I am confident that when Congress has worked its will and delivered a genetic information bill to President Bush, which he requested, church plans will be treated the same as employer group health plans and individual health plans.

I am pleased that this bill is finally here for debate and we will be able to take it through the process. Again, it is an important step toward eliminating discrimination based on genetic information in both health insurance and employment decisions.

This bill was reported unanimously last week by the Health, Education, Labor, and Pensions Committee. It is identical to S. 2283 in the last Congress, which passed 95 to nothing with strong administration support. The purpose of this legislation is to protect individuals from discrimination in health insurance and employment on the basis of genetic information. It would accomplish this by preventing health insurers and employers from taking any action that would affect an employee's health or employment benefits based on genetic information an employer might discover.

Establishing these protections will allay concerns about the potential for discrimination, and it will encourage individuals to participate in genetic research and to take advantage of genetic testing, new technologies, and new therapies. The legislation will provide substantial protections to those individuals who may suffer from actual genetic discrimination now, or may have some reason to be concerned about it in the future. These steps are essential to fulfilling the tremendous promise of genetic research and science.

The science of genetic technology has seen an explosion of progress in the past few years.

Just 2 years ago, for example, scientists at the National Institutes of Health and elsewhere finally completed assembly of the human genome. What had seemed impossible for so long came to pass. Suddenly, with great fanfare and the attention of the international scientific community, the announcement was made. The human genetic code had been broken.

Among other effects, the work of the Human Genome Project and sister efforts elsewhere has accelerated the ability of scientists to discover genetic ``markers'' for many serious and significant diseases that we may be able to avoid with the proper care and preventive treatment.

Unfortunately, great change such as this sometimes carries with it not only great promise, but also a potential for misuse. That occurs when what should be an exciting breakthrough becomes at the same time a source of fear. For example, some individuals who should have welcomed the new ability to test for markers of inherited diseases instead encountered fear that such information might also be used to deny them insurance coverage or employment security.

Ironically, for some, what could have been a life-saving tool became instead a means to harm the very people it was designed to protect. For too many, it was simply better not to know. Allow me to recount just a few real-life examples, drawn from testimony before NIH panels investigating this issue:

One woman, who suffers from a rare liver disorder, found that both she and her children were rejected by a major insurance company, even though both children were only passive carriers of the disease and would never suffer from it. Only after a news organization contacted the insurer was the denial reversed.

In another example, a woman with a family history of breast cancer found that she, too, carried the genetic marker for that disease--and as a result chose to have a precautionary mastectomy and hysterectomy. After that, her employer received a $13,000 annual increase in his small company's health insurance bill.

As a result, this woman's employer asked her to switch to her husband's insurance and told her that if she did so she would get a raise. Fearing that a switch in coverage would jeopardize her ability to be covered at all, she refused. The employer then raised the premium amounts charged to all his employees.

These accounts, and others like them, make the point very strongly for the need for us to act. Simply put, we need to act now to save lives.

We have before us today an important bill that will address the fault in the system and correct it. It was carefully crafted to alleviate the problems faced by people like those I have mentioned. It was designed to calm the fears of those who are hesitant to subject themselves to genetic tests, knowing that what safeguards are in place may prove to be inadequate. It is a bill to restore their confidence in the system and their faith that the process is fair.

Only if we pass this legislation now will we truly be able to encourage the scientific progress in this field. The science of genetics may well hold our best hope for combating many of our worst afflictions. However, genetics, like the rest of science, will progress best when ideas and information are freely exchanged.

As a former small businessman, I am sensitive to the concerns raised by some in the business community that this legislation might impose new liabilities on employers. I am confident, however, that after they become familiar with the provisions of this bill, such critics will see that it has been carefully written such that its enactment will reduce the risk that an employer will ever be dragged into court to face a claim of genetic discrimination.

It will not do this by letting employers and insurers off the hook. Far from it. Rather, what this bill will do is reduce litigation because its rules are clear, the exceptions are responsible, and the procedure is fair.

Simply put, neither will employees become victims of discrimination nor will employers be sued unreasonably. Why? Because this bill sets a standard for conduct that is easy to understand and easy to follow. We are far better off setting the rules of the road clearly and ``up front,'' rather than allowing them to be set piecemeal through litigation.

We also must act now to ensure legal uniformity and consistency nationwide. About half the States today have laws governing genetic information. However, these laws differ significantly from one another and do not always fully address the problem.

Once this legislation is signed into law we will have a clear, concise and uniform policy on genetic information that will make clear what is and is not an acceptable use for genetic information.

Over the course of the last Congress, I had the pleasure of working on this legislation with colleagues on both sides of the aisle. I thank the majority leader and Senators Snowe, Gregg, Kennedy, Jeffords, and others for their good efforts to reach a bipartisan agreement on this bill. It will make a difference in more lives than we will ever know.

If we pass this legislation, and pass it we must, we will have taken a great step forward and ensured that the initial breakthroughs of Dr. Watson and Dr. Crick, and the more recent ones by the National Genome Project, will continue to reap benefits for generations to come.

We will finally have a uniform policy in place to ensure that information retrieved from genetic testing will remain confidential and off limits to those who would be tempted to use it to discriminate.

As genetic technology continues to develop in the years to come, the beneficial impact on the public health and our individual lifestyles promises to be enormous. Enactment of the bill before us today will help America secure the realization of that promise.

I yield the floor and reserve the remainder of my time.

I yield 10 minutes to the Senator from Maine, Ms. Snowe.

Mr. President, I thank the Senator from Maine for her persistence, her enthusiasm, her perseverance, and particularly her reasonableness in dealing with this issue, recognizing how important it is and how important it is to get it done now.

I say to the Senator, you have just done tremendous work at pulling everybody together. I recognize that effort. Without your efforts, this would not have been possible. So I thank you for bringing it to this point.

I yield the floor.

Madam President, I ask unanimous consent that the order for the quorum call be rescinded.

Madam President, I yield 3 minutes for purposes of a colloquy with my friend, the Senator from Oklahoma.

Yes, that is correct.

Madam President, yes. In the type of situation described, the legislation would prohibit the insurer from discriminating against both the mother and the child because of the result of the genetic test of the child. It is the intent of the legislation to prohibit insurers from denying coverage to either a child or the child's family members based on the results of prenatal testing.

Madam President, I thank the Senator from Oklahoma for his careful concern and the depth with which he has been into the bill and the vast knowledge he has as a doctor which helps to get all those different perspectives that bring bills together. We thank him for his efforts.

I yield myself 6 minutes.

Answering the question of ``why do this bill now'' is very important. The most persistent question from the business community about this bill, and the most reasonable, is why now? Why should we create a new basis for lawsuits for a subject area where there is no record of abuse, on information that employers do not want or need, to prevent fear over hypothetical situations? Let me address this critical question head on because I asked it myself at the onset, and I have answered it to my satisfaction.

First, we are not legislating in the area of the unknown but in the area of hope. Genetic information holds the key to better diagnosis, better cures, better lives for all of the world's population. We have determined that a serious impediment to this progress is fear, fear that the information derived from the genetic tests will be used to harm the individual, fear that the usage of the information is creating reluctance and that it is leading to refusal to take tests. Every refused test is progress delayed for all mankind because it is only through testing that scientists will amass the knowledge to find the diagnostic tools and cures we so desperately desire. Considering the potential for discovery and the employer protections we have built into this legislation, I am confident we have struck the right balance. But the question remains, why now? Why not wait for greater proof of fear and abuse?

There are several reasons. For well over half the States, it is not too early to take action. We are seeing developed a hodgepodge of State laws that address the handling of genetic information and the banning of its use in the workplace and in insurance. There are patterns to these laws, but there are enormous inconsistencies. Likewise, Federal law is inconsistent. The Americans with Disabilities Act covers genetic matters if they are ``regarded as'' a disability, but the determination is subjective and likely to evolve on a case-by-case basis. The Civil Rights Acts of 1964, as amended in 1991, are also implicated.

In short, many questions remain over what is and what is not covered by existing Federal and State law. And history has taught us that unanswered questions breed lawsuits. With this legislation, we seek to answer questions and prevent litigation. We have the opportunity to write a clearly defined set of rules for the collection and preservation of genetic information and carefully proscribe its usage. That will prevent mistakes and abuse. Before anyone develops the desire or reason to harm our fellow citizens, a clear-cut set of rules established at the infancy of this amazing field of science will do greater good for businesses and insurers and the public than waiting for common law to develop.

I remind my colleagues and my friends in the private sector that lawyers are already looking for opportunities to sue for genetic discrimination under State laws, under the Americans With Disabilities Act, and under many other laws written for other purposes--hoping to cash in on this developing area of the law. This is one area where it is not appropriate to let nature take its course. I am not willing to abdicate this policymaking function and wait for the courts to decide on how laws should apply to a field of science that didn't exist when the laws we are talking about were written. That is the job of Congress.

It is also important to observe that there are few victims as of yet in this field of science and law, and that is a good thing. We want to keep it that way. The rules established in the Genetic Information Nondiscrimination

Act are clear and fair. We distinguish between the legitimate and illegitimate use of genetic information in the workplace. We ensure confidentiality and make it clear how employers are to do that. And from my perspective, most importantly, we have included every essential safeguard and exception to prevent this law from becoming a litigation nightmare for businesses.

In conclusion, let me state that it is no coincidence that the first major civil rights bill of this new Congress deals with a truly 21st century issue. While genetic discrimination may not be widespread at this time, this legislation ensures that discriminatory practices will never become common practice.

From the past, we have learned from employees, employers, insurers, and others all work best together when the rules are clear and opportunities for personal achievement and health are available. This legislation tells everyone what is expected of them and avoids the trip wires and uncertainty of some of our existing laws.

I reserve the remainder of my time. I suggest the absence of a quorum and ask unanimous consent that the time be equally divided.

Mr. President, I ask unanimous consent that the order for the quorum call be rescinded.

Mr. President, I have here a copy of the Genetic Information Nondiscrimination Act 2003, which was submitted by Senator Gregg, who was chairman at that time. We did not do a new report this time. The reason we did not is because the bill has not changed between then and now.

I strongly urge my colleagues to consult this report, Senate Committee Report 108-122, not only because of its excellent background and analysis, but also because it clearly illustrates much of the thinking and work behind why this bill was drafted as it was.

Mr. President, I ask unanimous consent that a Statement of Administration Policy, issued today, regarding genetic information be printed in the Record. The administration favors enactment of the statement this legislation and this statement gives some explanation.

Mr. President, I yield the floor, reserve the remainder of the time, and suggest the absence of a quorum, and ask that the time be equally divided.

Mr. President, I thank and congratulate the Senator from New Hampshire, Mr. Gregg, for his efforts on this bill. He was actually the committee chairman who made sure that all the parties came together, which around here is no small task, and came up with this package that does what our purpose was. He did it with such diligence, care, and completeness.

Rather than take the time to put out a new committee book about the bill, we used his book. It gives an explanation, and it also shows that the bill didn't need to be changed from what he had. So it is actually Senator Gregg's efforts that brought this bill to the floor and brought it in this complete fashion and moved it along so quickly. We thank him for all of his information and help.

I yield the floor.

Mr. President, I tell my friend that I do acknowledge that title XVIII of the Social Security Act is within the jurisdiction of the Senate Finance Committee. The matter before the Senate makes amendments to the Employee Retirement and Income Security Act and the Public Health Service Act. The section to which you have raised concerns was included as a conforming amendment to ensure consistency in Federal policy. I want to reassure my friend that I have every intention of respecting the jurisdiction of all Senate committees and will endeavor to consult with him on all matters before my committee that touch on the jurisdiction of the Senate Finance Committee. I ask my friend to provide me the same courtesy.

Mr. President, I ask unanimous consent for an additional 2 minutes to finish this up.

Mr. President, I thank the Senator from Iowa and all others who have spoken today. It has been a very positive day. I thank the Presiding Officer for the care with which he reviewed this bill and the issues he brought up and the resolution that I am sure we have gotten.

I would be very remiss if I did not thank the staffs of all of those people who help us dig into these issues to be sure we are doing the right thing. They bring some different perspectives that add to coming up with the right solution.

I particularly thank those people from the committee on both sides of the aisle for their efforts. I thank Kim Monk, David Thompson, Bill Pewen, David Bowen, Holly Fechner, Sean Donohue, Ilyse Schuman, Andrew Patzman, David Nexon, Adam Gluck, Carolyn Holmes, Kate Leone, Ben Berwick, Jennifer Duck, and Steve Northrup.

I particularly mention Katherine McGuire, who is the new staff director, who was able to put together all of the personnel we needed and then a committee retreat, as well as coordinating and moving all these things along, so we could be at this point this soon.

We thank all those people for their individual efforts as well as the team efforts they put in.

At this point, I think we are ready to move on. I yield the floor and thank everybody for their participation.

Amendment No. 13

(Purpose: To provide a complete substitute)

Mr. President, I suggest the absence of a quorum.

Mr. President, we are now considering a bill that I am pleased to have cosponsored and which I worked on with my colleagues for a number of years, the Genetic Information Nondiscrimination Act of 2005.

I thank our chairman, Senator Enzi, for expeditiously bringing this to the floor and guiding it, hopefully, to early passage tomorrow.

I also compliment Senator Snowe on being the chief sponsor of this bill, and for being in the forefront of this fight to protect people who want to understand perhaps the predispositions they might have for any illnesses because of their genetic history.

As we know, the bill makes it illegal for an employer or health insurer to discriminate against an individual based on genetic information.

The good news is that advances in genetics have opened major opportunities for medical programs. We are now able to diagnose and treat diseases earlier and more efficiently than ever before.

Again, my deepest thanks to Francis Collins for his great leadership at the National Human Genome Institute, for guiding and directing the mapping and the sequencing of the human gene. He has provided great leadership. I have followed it since Dr. Collins first took over, I think back in 1993, if I am not mistaken. It has just been amazing to watch this happen.

Some people said it was going to take 15 to 20 years to get this done, but thanks to Dr. Collins and his leadership and the great staff that he assembled at the National Human Genome Institute, we completed the entire mapping and sequencing by April of 2003.

We have this great information. You can go right on the Internet and you can find it all right there. It is all out there for the entire world to use. Quite frankly, they are using this genetic information on the human gene to understand and to do more research into the background of many of our illnesses that have genetic markers for them.

As a result, we are now able to diagnose and treat diseases earlier and more efficiently than ever before. I can daresay that in the years to come we are going to have more and more breakthroughs by scientists who are using this toolbox--as I have often called it--of genetic information that we have derived from the mapping and sequencing of the human genome.

That is the good news. The bad news is that this same genetic information could be used by employers or insurance companies to discriminate in hiring or in insurance decisions. Health insurers could charge higher copayments or deny coverage altogether to individuals who have a genetic predisposition for certain diseases.

When we passed the Americans With Disabilities Act in 1990, we had little understanding of the range of genetic information that could be used by employers and health insurers to discriminate.

The problem is that the ADA does not expressly address genetic discrimination. What is more, the Supreme Court has made it more difficult to apply the ADA to discrimination based on the genetic information.

I think there have been mistaken decisions of the Supreme Court, but, nonetheless, they have spoken.

It is incumbent upon us to pass legislation to clarify this. That is what this bill is all about--prohibiting enrollment restrictions and premium adjustments based on an insurer's ability to determine someone's genetic makeup. The bill prohibits employers from discriminating and hiring discrimination.

We want people to access the diagnostic tools scientists and researchers have and will come up with in the future so they can take steps to protect themselves to prevent perhaps the onset of an illness that can be caused by a genetic predisposition. For example, there could be a genetic marker, as we know, for breast cancer. Both of my sisters passed away from breast cancer at too early an age. They had families and their children are grown up; now they have children who are growing up. Of course, there is a great concern among them about the genetic background of their mother, or grandmother in this case. They should, if they want to, be able to access information to better protect themselves. They should know if they get early screening, early mammograms, and

whether they might want to control their diet so they would be more acutely aware the earlier they detected this, if, God forbid, it should happen to one of them, that they would be able to address that and to live full and meaningful lives.

We know if breast cancer is addressed early, the chances of someone surviving and living a whole, full life is great. So many people do not detect it early is the problem. We want people to access the diagnostic tools and not be afraid that if they get this information, they might lose their job, their health care premiums would go up, that sort of thing. That is what this bill is about.

I thank my colleague and my friend from Wyoming, the chairman of our committee, for bringing this expeditiously to the Senate floor. Hopefully, the House will take steps also to pass it very soon, and we can send it to the President. It is incumbent upon the House to take prompt action and get it to the President's desk as soon as possible.

Wellness

While I am here, I diverge a little bit, but not a lot, to briefly mention an issue that does not relate directly to the provisions of the bill but does relate to the issue of prevention and the issue of health and how much money we are spending in this country. I will talk about the issue of wellness and the role that Government can play in promoting wellness and prevention in order to help address a crisis in our health care system, the crisis of exploding costs.

As the Senate takes important bipartisan steps forward to prohibit discrimination based on genetic information, as we are doing here today, we can and must take bipartisan steps forward to promote wellness. We have heard a lot recently about the projected shortfall in Social Security over the next 75 years of $3.7 trillion. That is a lot of money in anyone's book. That is over the next 75 years. That pales compared to the shortfall in Medicare, which is estimated to be $17 trillion. That is the real crisis. Social Security is not a crisis; the real crisis is Medicare.

It is not only the Federal budget that is being eaten alive, it is State budgets, family budgets, it is corporate budgets. Look at the numbers: Some 75 percent of health care costs in the United States are accounted for by chronic conditions and diseases, many of which are preventable. Last year, nationally, we spent more than $100 billion on obesity alone. Medicare and Medicaid picked up almost half that tab. There was an address the other day by the chairman of General Motors talking about what it is doing to their company: $1,500 of the cost of every car they produce is now because of health care insurance costs.

It is unwise uneconomic and totally unsustainable. If we are going to control Medicare and Medicaid costs and private sector health care costs as well, we need a significant, even a radical change of course in our country. We need a fundamental paradigm shift away from a sick care system. That is what we have now. In other words, if you get sick, you get care, but there is precious little out there now that encourages and gives incentives to stay healthy in the first place. We need a paradigm shift toward preventing disease, promoting good nutrition, encouraging fitness and wellness. This will be good for the physical health of the American people, and it will be good for the fiscal health of government, corporations, private businesses, and family budgets.

I believe strongly in personal responsibility. I believe people should take charge of their own health. I also believe in corporate responsibility, community responsibility, and government responsibility. I make no bones about it: It is past time for the Federal Government to step to the plate in a very robust way.

To that end, I introduced the HELP America Act last year, otherwise known as the Healthier Lifestyle and Prevention Act. This legislation takes a comprehensive approach to wellness and prevention. It provides tools and incentives to schools, employers, and communities. It aims to create better nutrition, physical activity, and mental health opportunities for kids in schools. I saw some data recently that said that 80 percent of elementary school kids in America today get less than 1 hour of physical exercise a week in school. That is unconscionable. We have to have better physical activity and nutrition for our kids in school.

The bill creates better nutrition, physical activity, and mental health opportunities for kids in school. It gives the Federal Trade Commission authority to regulate unfair marketing to children, especially junk food. It provides incentives to build paths, safe sidewalks and bike paths. It requires nutrition labeling on menus in chain restaurants. It does a lot more than that.

The HELP America Act is comprehensive. It is ambitious. But it is only at the beginning of a long legislative process. I am confident over time we can build a bipartisan consensus to move the Federal Government toward wellness, prevention, away from sickness, more in keeping people healthy. We have already made some progress.

Several elements of the HELP America Act passed late last year. For example, we secured $440 million for research at the National Institutes of Health into the causes and cures of obesity. We sent more than $50 million in grants to States to fund programs to address nutrition, physical activity, and obesity. We secured some $114 million for tobacco prevention and cessation activities at the Centers for Disease Control and Prevention. We also expanded the fresh fruit and vegetable program.

Three years ago when we passed the farm bill, I put a provision in there to test a theory. My theory was if we gave kids in school free fresh fruits and vegetables--not just at lunch but anytime during the day--they would eat them, they would like them, they would not be putting money in the vending machine to buy junk food, they would study better, they would be better behaved, and everyone would benefit. So we tried out the theory. We got a small amount of money in the farm bill. We took 4 States, 25 schools in each State, 100 schools, and 1 Indian reservation in Arizona. We provided enough money to bring free fresh fruits and vegetables into these schools. What has happened? In each one of those schools, it has been a resounding success. Not one of those schools has asked to be taken off the program. In fact, every single one of them has asked, please, don't take this away.

We have now gone from four States to nine States. We have gone from 100 schools to a little over 200 schools. It is growing. Visit one of these schools where these kids get the free fresh fruits and vegetables.

These little kids in school, at about 9:30 in the morning, get the ``growlies,'' they get a little antsy. If they have an apple to eat or an orange or a clementine or kiwi fruit or a banana or grapes, or they get fresh broccoli in the afternoon or cauliflower or carrot sticks, you would be amazed how much they eat of these fruits and vegetables.

As I said, the teachers love it. The principals find it is a great system. Even parents now are weighing in. Parents love it. Kids are even going home and asking their parents to buy these at grocery stores. Again, I mention that because this is getting to the early part, getting kids to eat the proper foods, getting them tuned in to fresh fruits and vegetables at an early age. But there is so much we have to do. It is time for the Federal Government to start moving in that direction. If we do not, we are never going to be able to save Medicare and Medicaid, we are never going to be able to pay for it. It is going to bust us.

So we have to start preventing, we have to start keeping people healthy in the first place. That is what this is all about--so that we have taken some positive steps forward. They are small steps, kind of baby steps, but I am convinced there is a solid, bipartisan consensus to pursue this course of wellness and prevention. I know that Senator Frist has been one of the great leaders in this area of prevention and wellness. I look forward to working on this agenda with my colleagues of both parties in the months ahead. I hope we can get a strong, bipartisan effort.

I hope the President, who, by the way, is a great example of physical fitness--though I may have some disagreements with the President on some things, that is one thing I agree with him on. He is good at physical fitness. He does not smoke. He does not drink.

As far as I know, he eats well and exercises well.

Wishing Senator Specter Well

Mr. President, I understand this is now on the news wires, so I want to comment on something that has just come to my attention this afternoon. I received a call from one of the best friends I have ever had, a close friend here in the Senate, someone whom I have admired for his personal qualities as well as for his senatorial qualities for so many years. I have been privileged to work with him side by side now going back almost 20 years.

I received a call a little while ago from Senator Specter of Pennsylvania, who informed me that doctors at the University of Pennsylvania Hospital had diagnosed him with Hodgkin's disease. Well, it kind of took my breath away. There is no one for whom I have a higher regard than Senator Arlen Specter. I think how hard he has worked to double the funding for NIH for basic research, and then to have this happen. But he assured me that it is at an early stage. The doctors have said he has an excellent chance of full recovery and will be back here very soon after our break next week. He will have to undergo some treatments, but I understand the doctors say that Arlen Specter has an excellent chance of full recovery.

I know all of my colleagues wish him the best. Our prayers are with him. We know he is a strong person. He has a strong will. He is a person of strong faith. And we know that his will and his faith will carry him through. I know we will have Senator Specter back here with us leading the charge to make sure we address the real needs of health care and biomedical research, to make sure we fulfill our obligations in education in this country, where he has been a great leader.

Again, Mr. President, we wish Senator Specter well, a full and speedy recovery, and look forward to having him back here as soon as possible.

With that, Mr. President, I yield the floor.

Mr. President, I yield myself 10 minutes.

Mr. President, first I commend my friend and chairman of the Health, Education, Labor, and Pensions Committee, Senator Enzi, for his leadership in reporting out this legislation. As he has outlined, and as I will speak to in a moment, it is a matter of enormous importance to millions of Americans. He has outlined the reasons for that.

When we think back to the time Senator Snowe and others introduced this legislation a number of years ago, there was a great deal of apprehension, a great deal of concern, and a good deal of opposition to this over that period of time. Due to a good deal of very hard, diligent work by the chairman here, by our staffs, and by many others on our committees, especially Senator Jeffords and Senator Gregg, Senator Dodd, Senator Harkin, Senator Clinton, as well as Senator Olympia Snowe, we are about to successfully pass this legislation in a very strong bipartisan way, and they deserve great commendation at this time. I hope that with very strong bipartisan support it will send a good message to the House of Representatives that it is worthy to be done, necessary to be done, and has the great and overwhelming support of the American people. I hope we will see action.

I also thank the majority leader for scheduling this bill and giving it priority. As all of us know, Bill Frist, a physician, knows the extraordinary potential of genetic research and its importance in improving the quality of medical care and in preventing, treating, and curing disease. I want to express our great appreciation to him for giving us the opportunity to speak this afternoon, with the completion of this bill either this evening or tomorrow. We thank him as well.

Throughout our history, the Nation has moved toward a more fair and more just society, often with great difficulty. Along the way, we had setbacks, even some failures. But we have had significant triumphs, too, especially in this past half century.

In 1964 the Congress enacted the Civil Rights Act to end one of the great evils of our time, discrimination against millions of our fellow citizens based on their race, color, religion, sex, or national origin. In 1965 we passed the Voting Rights Act to end discrimination in the right to vote.

In 1967, we passed another important law prohibiting age discrimination in employment.

In 1990, we passed the Americans with Disabilities Act to end discrimination against citizens with mental or physical handicaps.

In 1991, we strengthened the vital protections against job discrimination established in the 1964 Act.

Today we take another step in our national journey to a fairer and more just America by approving important legislation to end another insidious form of bias--discrimination based on the most personal aspect of any individuals, their unique genetic code.

Four years ago, we celebrated an accomplishment that once seemed unimaginable--deciphering the entire sequence of the human DNA code. This amazing accomplishment may well affect the 21st century as profoundly as the invention of the computer or the splitting of the atom affected the 20th century.

I personally believe this is the century of the life sciences with the greatest kind of hope and opportunity for progress in the life science area.

To cite but one example of why this legislation is so important, it was this new knowledge that enabled scientists to decipher the DNA sequence of the SARS virus only weeks after it was first identified.

The extraordinary promise of science to improve health and relieve suffering is in jeopardy, however, if our laws fail to provide adequate protections against abuse and misuse of genetic information.

The bipartisan bill the Senate considers today prohibits health insurers from using genetic information to deny health coverage or raise premiums.

It bars employers from using genetic information to make employment decisions. It prohibits insurers and employers from seeking genetic information, or requesting or requiring individuals to take genetic tests. It bars disclosure of genetic information by an insurer or employer, and provides effective remedies so that anyone who has suffered genetic discrimination can obtain relief.

Congress took an initial step in the right direction when we passed the Health Insurance Portability and Accountability Act. That landmark law established important protections to ensure that those who change their job or lose their job would not also lose their health insurance. It included also a prohibition on genetic discrimination in group health insurance.

The pending bill extends that prohibition to many other types of genetic discrimination, and I commend our colleague from Maine, Senator Snowe, has been a principal leader on this vital issue for many years.

I also commend our distinguished chairman of the HELP Committee, Senator Enzi, for his impressive commitment to enacting this needed legislation by making it one of the very first items for committee action under his leadership. Other members of our committee have given time, energy and ideas to this important issue, especially Senator Jeffords, Senator Gregg, Senator Dodd, and Senator Harkin.

Our majority leader deserves great credit as well. As a physician, he knows the extraordinary potential of genetic research to improve the quality of medical care and prevent, treat, and cure disease. Hopefully, the bipartisan momentum will lead to an enactment of legislation this year.

Few kinds of information are more personal or more private than a person's genetic makeup. This information should not be shared by insurers or employers, or be used in decisions about health coverage or a job. It should only be used by patients and their doctors to make the best possible decisions on diagnosis and treatment.

I hope we can all agree that discrimination on the basis of a person's genetic traits is as unacceptable as discrimination on the basis of race or religion. No American should be denied health insurance or fired from a job because of a genetic test.

Last fall, witnesses on a panel of the National Institutes of Health testified about their first hand accounts of genetic discrimination. Even though they will never develop the disease, Heidi Williams' children were denied health insurance coverage because they are carriers for a genetic disorder. Phil Hardt's children feared discrimination so much that they sought genetic tests in secret, paying out of their own pockets and not using their real names.

During hearings in the House, Gary Avary told how his employer, the Burlington Northern Santa Fe Railroad, required any employee with carpal tunnel syndrome to have a genetic test. Employees who refused were threatened with penalties, or even the loss of their jobs.

Terri Seargent was discharged from her job at a private firm in North Carolina in 1999, 2 months after beginning very expensive treatment for a disease that was covered by her employer's health insurance plan. Since joining her employer in 1996, she had received positive annual performance ratings and generous annual raises. Yet she lost her job soon after the special treatment began.

Fear of genetic discrimination also prevents people from having genetic tests for hereditary cancer, which would provide them with life-saving information to help them prevent the onset of cancer or increase the likelihood of early diagnosis. In a recent study, only 57 percent of women decided to undergo testing for mutations in the breast cancer genes and only 43 percent of those at risk for colon cancer chose to have genetic testing. People fear cancer, but many also fear losing their jobs or their health insurance even more.

Experts in genetics are united in calling for strong protections to prevent this misuse and abuse of science.

The HHS advisory panel on genetic testing--with experts in law, science, medicine and business--has recommended unambiguously that federal legislation is needed to prohibit discrimination in employment or health insurance based on genetic information.

Francis Collins, the leader of the NIH project to sequence the human genome, said:

Genetic information and genetic technology can be used in

ways that are fundamentally unjust . . . Already, people have

lost their jobs, lost their health insurance, and lost their

economic well-being because of the misuse of genetic

information.

Genetic tests are becoming even cheaper today and more widely available. If we don't ban discrimination now, it may soon be routine for employers to use genetic tests to deny jobs to employees, based on their risk for disease.

When Congress enacts clear protections against genetic discrimination in employment and health insurance, all Americans will be able to enjoy the benefits of genetic research, free from the fear that their personal genetic information will be used against them.

If Congress fails to guarantee that genetic information is used only for legitimate purposes, we will squander the vast potential of genetic research to improve the nation's health.

Effective enforcement of the ban will also be essential. It makes no sense to enact legislation giving the American people the promise of protection against this form of discrimination, and then deny them the reality of that protection.

President Bush recognizes the seriousness of this problem, and supports a ban on genetic discrimination. As he said on June 26, 2001, ``genetic information should be an opportunity to prevent and treat disease, not an excuse for discrimination. Just as our nation addressed discrimination based on race, we must now prevent discrimination based on genetic information.''

I commend the President for his support, and I look forward to working with the administration to see that a strong bill on genetic discrimination is signed into law this year.

It is time for Congress to act, and I urge the Senate to pass this bipartisan bill with the broadest possible support.

I ask unanimous consent to have printed in the Record the strong statement of the American Academy of Pediatrics. They are concerned that discrimination will deny families access to health insurance for their children.

Mr. President, the American Cancer Society supports our legislation. The American Osteopathic Association says access to health care should not be restricted on the basis of genetic testing. The American Society for Human Genetics; the biotechnology industry--all have made very important statements in support of this legislation, along with other organizations.

We suggest, for those who are following this debate, to refer to a July 2004 report titled ``Faces of Genetic Discrimination'' from the Coalition for Genetic Fairness. This is a wonderful document that I think has so much information. It lists the wide range of groups supporting this legislation, including the American Academy of Pediatrics, the American Cancer Society, the American Medical Association, the American Osteopathic Association, the American Society for Human Genetics, the Biotechnology Industry Organization, Hadassah, the Juvenile Diabetes Research Foundation, the National Organizations of Rare Disorders, the National Workrights Institute, and the Society for Women's Health Research. It is a wonderful document that outlines the history and the opportunity of genetic research and technology.

Mr. President, I yield myself 4 minutes.

I had mentioned earlier the great leadership that the Senator from Maine has been providing. She has been a noble soul since the very cold winter when she first introduced this legislation. Now she deserves great credit that we are at point.

Just on that point, I wish to recognize Representative Slaughter in the House of Representatives. She has been a great advocate over a long period of

time. I want the Senate Record to reflect that.

I also want the Record to reflect the fact that President Clinton issued an Executive order banning genetic discrimination against Federal employees in the year 2000. It was limited, obviously, with his authority and power, to just Federal employees but, nonetheless, it was a significant step at that time.

I also draw attention to the strong support President Bush has given to this undertaking. In a radio broadcast, actually in 2001, he stated:

Genetic discrimination is unfair to workers and their

families.

In that same radio broadcast he also stated:

To deny employment or insurance to a healthy person based

only on predisposition violates our country's belief in equal

treatment and individual merit.

We also have the strong letter of support from the Secretary of HHS, Tommy Thompson, from last year. There is also the statement from the administration, this year, in support.

I just mention one final point. Out at the National Institutes of Health, where they really do the best of the research--it is really the gold standard of research--they have important genetic research out there. In their information sheet, they have what we call the consent form. This is the consent form that any individual who wants to participate in genetic research at NIH signs. It says:

We will not release any information about you or your

family to your insurance company or employer without your

permission. However, instances are known in which genetic

information has been obtained through legal means by third

parties. This may affect you or your family's ability to get

health insurance and/or a job.

Here is the premier workplace in the world doing the most significant, important research in genetics, which is so incredibly important, just raising this as a very real potential danger. It will not be a danger when we get this legislation passed into law.

Finally, I also commend my friend, and our former leader, Senator Daschle, who had introduced important legislation in 1997 on this very subject matter. He was one of the early leaders in this battle.

Mr. President, I think we have speakers who are on their way. I suggest the absence of a quorum.

Mr. President, I thank, first and foremost, the chairman of the Health, Education, Labor, and Pensions Committee, the HELP Committee, Senator Enzi, for his commitment and for moving this legislation out of the committee as the first of a group of health- related bills to be referred out of his committee as the new leader, the chair of this committee this year. I thank the chairman for doing so and I express my gratitude to him. This sends a very significant message to the House of Representatives of the importance and the value of this initiative. Senator Enzi not only as chair of this committee but previously was instrumental for participating in negotiations for more than 16 months to help fashion a consensus on the legislation now before the Senate and that was enacted through his committee, as well. I thank him for his leadership that made it possible to bring this legislation to the Senate.

I also express my appreciation to my colleague on the other side of the aisle, Senator Kennedy, as ranking member of the HELP Committee, who has been a longtime champion of protection for an individual's private health information, dedicating himself over the past year and a half toward forging a bipartisan solution to this issue.

Also, as a result of the considerable yeoman efforts of the Senate majority leader, a major breakthrough occurred on this legislative initiative. The Senate majority leader agreed to the necessity of this legislation the last few years in making it possible. It was due in large measure to his stalwart efforts in working with me and others such as

Senator Enzi and Senator Kennedy, and Senator Jeffords, who has been a collaborator on this issue for 8 years, which made it possible to forge this bipartisan effort. I thank the Senate majority leader because he, obviously, was pivotal in ensuring we could pave the way for the passage of this legislation as we did last fall in October with unanimous support. Hopefully, we will receive the same support for this initiative today, as well. I thank the leader for giving his support and vital efforts to making this possible. I thank him for his vision and tireless support.

Also, I thank Senator Gregg who last year dedicated significant time and staff resources when he was the previous chair of the committee and for helping to make it a priority of his committee last year when he chaired the HELP Committee.

Also, Senator Dodd has been deeply committed to fighting to ensure that consumers have the strongest possible protections afforded to them with the passage of this legislation.

Since April of 1996 when I first introduced the Genetic Information Nondiscrimination Health Insurance Act, along with my colleague, Senator Jeffords, science has continued to hurtle forward, further opening the door to early detection and medical intervention through the discovery and identification of specific genes linked to diseases such as breast cancer, Huntington's disease, glaucoma, colon cancer, and cystic fibrosis.

We recognized in 1996 with progress in the field of genetics accelerating at a breathtaking pace that we must ensure the fast arriving scientific advances in treatment and prevention of diseases do not advance a new basis for discrimination. As with countless scientific breakthroughs in history, the eventual completion of the genome project not only brought the prospects of medical advances such as improved detection and earlier intervention but also the potential for harm and abuse.

Every day since that breakthrough, the American people have been vulnerable to this type of discrimination. The everyday risk of discrimination has inhibited the full use of this vast, still untapped reservoir of knowledge.

As I have said previously, the fear of repercussions from one's genetic makeup was brought home to me through the real-life experience of one of my constituents, Bonnie Lee Tucker. In 1997, Bonnie Lee wrote to me and told me she was too afraid to have the BRCA test for breast cancer, even though nine women in her immediate family were diagnosed with breast cancer and she herself was a survivor. She was worried that knowledge might damage her daughter's ability to obtain insurance in the future.

Bonnie Lee was not alone in her fear. When the National Institutes of Health offered women genetic testing, nearly 32 percent of those who were offered a test for breast cancer risk declined to take it, citing concerns about health insurance discrimination.

What value is scientific progress if it cannot be applied to those who would most benefit?

I recall the testimony before Congress of Dr. Francis Collins, the Director of the National Human Genome Research Institute, without whom we would not have reached this day. In speaking of the next step for those involved in the genome project, he explained the project scientists were engaged in a major endeavor to ``uncover the connections between particular genes and particular diseases,'' to apply the knowledge they just unlocked. In order to accomplish this, he said:

We need a vigorous research enterprise with the involvement

of large numbers of individuals, so that we can draw more

precise connections between a particular spelling of a gene

and a particular outcome.

With all this tremendous potential, this effort cannot reach its full promise if patients have a reason to feel repercussions of genetic test results. Given the advances in science, there are two distinct concerns at hand. The first, of course, is discrimination by health insurance. The second is employment discrimination based simply upon an individual's genetic information. This legislation addresses both of these issues based on the firm foundation of current law.

With regard to health insurance, these are clear and familiar issues which the Senate has previously debated in the context of larger patient privacy issues. Indeed, as Congress considered what now is known as the Health Insurance Portability and Accountability Act of 1996, we also addressed medical information privacy. Moreover, any legislation that seeks to fully address these issues must consider the interaction of the new protections with the privacy rule which was mandated by HIPAA and our legislation which accomplishes just that.

Specifically, we clarify the protections of genetic information as well as the request to receive a genetic test from being used by the insurer against the patient. The fact is, genetic information only detects the potential for genetically linked disease or disorder. And potential does not equal a diagnosis of disease.

It is critical this information be available to health care professionals to diagnosis or treat an illness. Without the protection which this bill offers, patients will not be able to take advantage of our ever-increasing knowledge of genetics.

On the subject of employment discrimination, unlike our legislative history in debating health privacy matters, the issue surrounding protecting genetic information from workplace discrimination is not as extensive.

To that end, our bipartisan bill institutes these protections in the workplace. There should be no question of this necessity. Indeed, it is an imperative. The threat of employment discrimination is not hypothetical, and therefore it is essential that we take this information off the table, so to speak, before such abuse becomes widespread. While Congress has not yet debated this specific type of employment discrimination, we have considerable case law and legislative history on which to build.

Indeed, as we considered the necessity for this type of protection, we agreed that we must extend current discrimination protections to genetic information. We reviewed current employment discrimination law and possible remedies for instances of genetic discrimination and whether they should differ from existing remedies under current law, such as the American Disabilities Act or the EEOC. This bill creates new protections by paralleling current law and clarifying the remedies available to victims of discrimination. So regardless of their religion, race, or DNA, people will all receive the same protections under the law. There will be an across-the-board Federal standard which becomes so critical to fundamental protections under the law.

It has been more than 4 years since the completion of the working draft of the human genome. Like a book that sits unopened, the wonders of the human genome are useless if it is compromised by the fear of discrimination. This legislation is a shining example of what can be accomplished when we set aside partisan differences in order to address the challenges facing the American people.

I urge my colleagues to support this legislation. Again, I thank the chair of the committee for his instrumental and pivotal leadership to bring this legislation to the floor.

Mr. President, I yield the floor.

Mr. President, I ask unanimous consent the order for the quorum call be rescinded.

Mr. President, I ask unanimous consent I be allowed to speak for up to 10 minutes on the bill.

Mr. President, first I rise to congratulate the Senator from Wyoming for assuming the chairmanship of the HELP Committee and moving forward on this exceptionally important piece of information, the Genetic Information Nondiscrimination Act of 2005. Quickly moving this legislation forward shows the priority the Senator from Wyoming places on straightening out our medical situation in this country, making delivery of health care more affordable, more thoughtful, and in this case free of discrimination.

This is the first civil rights act, really, of this century, for all intents and purposes. It is a major commitment to people of our country that they will not be discriminated against on the basis of their genetic code. Last year we celebrated the discovery by Dr. Watson and Dr. Crick of the double helix. Then we also celebrated the fact that NIH had mapped the human genome, that the DNA project was completed. Those were huge milestones which have had an exceptional impact on the quality of health care in this country. They will continue to have an expanding impact; the breadth and depth of influence on how we deliver health care and how people's health care is affected within our Nation cannot even be predicted. That is because, if you can define what your genetic code is, you can obviously make huge strides toward curing diseases which might potentially afflict anyone.

But this new science also created issues for us, public policy issues. One of the big public policy issues it created is the issue of discrimination based on your genetic code. Everybody has this problem-- or has this benefit--or has this situation. We all have genes. This is a universal issue. It is something that impacts everyone.

So Congress has taken a long and indepth look at how we should address this from a public health policy standpoint, working in a very bipartisan way under the leadership of Senator Enzi. Prior to that, I was chairman of this committee and we worked on this very aggressively with help across the aisle, of course, of Senator Kennedy and members of the Democratic leadership on the committee.

Then, outside the committee itself, Senator Frist and Senator Snowe and others have played a major role in making sure that what we did in this area was thoughtful and had a purpose and accomplished the goal. The goal was to make sure that discrimination did not occur in the science of the human genome and that the science of the use of this information that genetics was going to produce could be best implemented so we didn't end up retarding the development and implementation of new cures. The goal was to address the concerns of people relative to their genetic history and the potential it has for them as they move forward in their lives so they are not impacted negatively by acts of discrimination which might chill people's willingness to use this genetic information or even obtain this genetic information in their interfacing with the health community.

This act is an effort, after a tremendous amount of work, to thoughtfully and intelligently address the issue of how we effectively promote the use of genetic information. It actually encouraged people to take advantage of this new science rather than have an atmosphere where people are limited or are discouraged from taking advantage of this new science.

We know, unfortunately, that the potential is there, and it has actually occurred. We have instances--a few, I admit, but there are specific instances--of discrimination occurring as a result of the person's genetic history or potential genetic history in the area of employment and in the area of health insurance. This is where this bill addresses those concerns.

It specifically addresses the issue of health insurance underwriting, and it specifically addresses the issue of employment. Its impact is that health insurance plans will not be able to deny eligibility for an employee into a health plan based on genetic information, and it prohibits health insurance

plans from charging higher premiums based on an individual's, or his or her family's, genetic information. It is very important.

It also does not allow an individual health insurance employer to request genetic information or to use a person's genetic information in their decisions on the hiring and firing of an individual.

It recognizes that all individuals, whether they are healthy or sick, and all medical information, whether genetic or otherwise, should be afforded the same protection under the law. And that is a critical point.

The practical implication of it is, if you have a family history where you sense or may think there may be a problem that you have because of your genetic makeup and you are not going forward and being tested, your willingness to see a doctor to see if that genetic problem may actually exist for you is not going to be limited because you are not going to be concerned with the fact, if that information comes forward or is obtained that it might be used to limit your ability to get a job, keep a job, or get health insurance, or keep health insurance, or, alternatively, that your children or children's children might also, if the genetic information is confirmed, be subject to discrimination for work or for obtaining insurance.

It will allow people to be much more aggressive in using this brand new science to assist them in getting their health in order and making sure that people and their children are properly screened for what can be produced from genetic information.

This is going to be such a hugely valuable tool for our society and for people. There should be nothing in our society which says to people you really can't afford to do this, because if you take this type of test, you see this doctor, if you have this type of review, you are going to find out something that might lead to your quality of life being dramatically reduced because you lose your job or you lose your insurance.

The legislation is appropriate. Those who questions its need, do so out of legitimate concern that it is a new Government law, new Federal legislation, and they do not see that the problem exists, I guess, in many instances or, if it does exist, they don't think it is significant enough to address. To those folks, I would simply say this: Yes, the problem does exist. Yes, we have instances of discrimination occurring both in the workplace and in the insurance industry. They have been limited but, more importantly than that, this is a science which holds such tremendous potential for dramatically improving the way we deliver health care as a society that we do not want anything to stand in its way to chill its use or to undermine the willingness of Americans to participate in studies of themselves or their families or their genealogy which might undermine the advantage which this new science gives them in getting better health care.

It is an appropriate piece of legislation. I think it puts the emphasis in the right place, which is reasoned and appropriate in how we handle genetic information and we avoid discrimination in the use of that information.

Again, I congratulate Senator Enzi for setting this out as the first item he has moved out of the HELP Committee under his chairmanship. It reflects his commitment to making sure health care in this country is not only of a better quality, but that the science that backs up health care continues to be robust as it pursues cures for all Americans.

I yield the floor.