[Congressional Record (Bound Edition), Volume 154 (2008), Part 5]
[Senate]
[Pages 6830-6842]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2007

  The PRESIDING OFFICER. Under the previous order, the Senate will 
proceed to the consideration of H.R. 493, which the clerk will report 
by title.
  The assistant legislative clerk read as follows:

       A bill (H.R. 493) to prohibit discrimination on the basis 
     of genetic information with respect to health insurance and 
     employment.

  The PRESIDING OFFICER. The Senator from Massachusetts.
  Mr. KENNEDY. Mr. President, I ask unanimous consent that the previous 
order with respect to H.R. 493 be modified to provide that following 
disposition of S. 1315, the time until 2:15 p.m. be equally divided and 
controlled, as previously ordered, and the Senate proceed to vote on 
passage of H.R. 493, with the remaining provisions of the previous 
order remaining in effect.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. KENNEDY. Mr. President, for the information of our membership, we 
will be having a rollcall vote, then, at 2:15 p.m., and the time, now, 
will be divided between Senator Enzi and myself on the issue of the 
genetic nondiscrimination legislation.
  Mr. President, I yield myself such time as I might use.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. KENNEDY. Mr. President, today, the Senate is considering the 
first major new civil rights bill of the new century. Five years ago 
this week, we celebrated a milestone that once seemed unimaginable: the 
completion of the Human Genome Project, which sequenced and mapped all 
the genes in the human body. This Friday is DNA Day, when we pay 
tribute to this amazing accomplishment, which was the dawn of a new era 
in the life sciences. Mapping the human genome has provided 
extraordinary insights for modern medicine, and it has opened the door 
to immense new opportunities to prevent, diagnosis, treat, and cure 
disease. Its discovery may well affect the 21st century as profoundly 
as the invention of the computer or the splitting of the atom affected 
the 20th century.
  But with this invaluable new information comes a tremendous 
responsibility. A person's unique genetic code contains the most 
personal aspects of their identity. As we begin to decipher this 
information, Americans have legitimate fears about how this deeply 
private information will be used. Surveys show that people are already 
declining to take medically valuable tests out of fear that they will 
face discrimination or invasion of their personal privacy. These fears 
are not unwarranted. As Francis Collins, the leader of the NIH project 
to sequence the human genome, has 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.

  The remarkable medical advances of the genetic age will be valuable 
only if people are not afraid to take advantage of them. The promise of 
this new science will be in jeopardy if our laws fail to contain 
adequate protections against abuse and misuse of genetic information.
  The bipartisan bill now before the Senate takes a substantial step to 
preserve the value of new genetic technology and to protect the basic 
rights of every American. The Genetic Information Nondiscrimination Act 
recognizes that discrimination based on a person's genetic identity is 
just as unacceptable as discrimination on the basis of race or 
religion. No American should be denied health insurance or be fired 
from a job because of genetic testing.
  The bill before us provides comprehensive protections. It prohibits 
health insurers from using a patient's genetic information to deny 
health insurance coverage or raise premiums. It bars employers from 
using genetic information to make employment-related decisions. It 
prohibits insurers and employers from seeking genetic information or 
requiring individuals to take genetic tests. It bars disclosure of 
genetic information by insurers or employers, and it contains effective 
remedies so that anyone who has suffered genetic discrimination can 
obtain relief. By granting these protections, the

[[Page 6831]]

bill gives the American people the opportunity to reap the rewards of 
improved health care through genetics without fear of unjust use of 
their personal genetic makeup.
  This bill has been the product of a decade of dedicated effort by 
Members on both sides of the aisle. My sincere thanks go to Senator 
Snowe and Senator Enzi for helping to lead this bipartisan effort with 
me, and to Senator Reid, our majority leader, and the Senate 
leadership, for their commitment to moving this bill forward. Thanks to 
Senator Gregg and Senator Dodd and Senator Harkin, who also made 
important contributions through their leadership and expertise. I 
commend our House colleagues--Speaker Pelosi, Representative Slaughter, 
Representative Biggert, Chairman Miller, Chairman Rangel, and Chairman 
Dingell--for their strong support, and also our former colleague, 
Senator Daschle, who was a leader in his term here in the Senate. It is 
a remarkable achievement to get this bill to the President's desk. The 
administration cooperated with us throughout the process, and we are 
grateful for its support on this important legislation.
  We stand today on the threshold of a major new breakthrough in 
medical technology. With personalized medicine that genetic science 
makes possible, patients can receive therapy precisely tailored to 
their own genetic makeup with reduced side effects and greater potency. 
But the effectiveness of these new technologies is undercut by people's 
legitimate fears and the lack of strong protections.
  Just this week, doctors announced important findings on the genetic 
factors that may contribute to Parkinson's disease. There are new 
discoveries in genetic variations that may confer a reduced risk of 
heart failure and new insights into the genetic switches that may one 
day control cancer. But one great barrier stands in the way of these 
extraordinary advances that are possible in this new field of 
discovery: the reluctance of patients to receive the benefit of this 
new science and the fear that is already keeping patients from 
volunteering for this research.
  Even the crown jewel of our Federal research enterprise, the National 
Institutes of Health, has been affected by this fear. The threat of 
genetic discrimination is so real that it is even listed on the 
informed consent document that the NIH provides to patients considering 
enrolling in the clinical trials of the new genetic medicines. This is 
what the chart 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.

  Can you imagine individuals going out to the NIH and saying: I will 
volunteer in order to be a part of a research program, only to find out 
that their genetic information could be leaked? What happens if it is 
leaked? The insurance companies will say: Look, this individual has a 
better chance of getting breast cancer, diabetes, bipolar disorder, or 
a whole series of different types of cancer, so why are we going to go 
ahead and insure that individual? Or if we are going to insure him, we 
are going to charge a good deal more.
  Some of this genetic information is valuable to know for medical 
history. For example, if mothers have certain types of genetic markers, 
the daughters might want to find out whether they have the same kind of 
proclivity. Yet if they go out and have the test so that they know 
whether to start thinking about treating that particular health 
challenge, they know they will be discriminated against. They won't be 
able to get a job because an employer will say: Why should I hire that 
person when they may very well develop breast cancer, and why should I 
hire that person because if they develop breast cancer, then it will 
cost my company a good deal more to pay for that individual's health 
insurance. That is the reality today. That is happening today.
  There has been an explosion of progress in terms of genetic research. 
New opportunities for personalized medicine are opening, which is 
really going to be the pathway in the future. With personalized 
medicine, patients will no longer have to receive treatments that work 
for the average person--but may not work for them. Instead, they will 
receive therapies precisely tailored to their own genetic makeup, with 
reduced side effects and far greater potency.
  Individualized medicine is the way of the future. With that, there is 
going to be a great deal more information about an individual's health, 
but also the attendant challenge and problem that this information 
could be used to adversely impact that individual. That is what we want 
to avoid, and that is what we want to protect against.
  We know there are numerous barriers to new discoveries that Congress 
can do little about: the complexities of disease, the uncertainties of 
science, and the rarity of true inspiration. But this is one major 
problem which is entirely within our power to solve. We can make a 
difference, and we can do it today. With effective protections against 
the misuse of genetic information, this amazing new technology can 
realize its potential and bring better health care to all people 
throughout our world. I hope all of our colleagues will join in 
advancing the potential of genetic research by supporting the Genetic 
Information Nondiscrimination Act.
  I want to show on the chart all of the different groups that are 
supporting this legislation. It gives us a very clear idea of the 
overwhelming support of the medical profession. Family physicians, 
pediatricians, the American Cancer Society, the American Diabetes 
Association, the American Heart Association--virtually the whole health 
community strongly supports this bill. The National Partnership For 
Women and Families and other women's groups and civil rights groups are 
supportive, as are the many specialized medical groups that know about 
genetic diseases.
  Genetic discrimination issues are often tied to national origin. We 
have the Tay-Sachs disease that affects many members of the Jewish 
community; sickle cell anemia, which affects many African Americans; 
Cooley's disease, which affects many of those who come from 
Mediterranean countries, and a host of others. These are genetic 
diseases. That is why a number of the different groups are so concerned 
about this, because they have seen the discrimination.
  I will just give ease to our colleagues. This chart shows when we 
have considered the legislation at other times. We considered it in 
2003--the Senate did--and in 2005, and look at the overwhelming votes, 
Republicans and Democrats, even in the House in 2007. But we haven't 
been able to get the House and Senate together at the same time. So 
this has been going on since 2003, and we are in 2008. We have the 
opportunity with this legislation to get the job done, and the 
President has indicated he is going to sign it so we can achieve this 
extremely important undertaking.
  Let me just review some of the other statements about why this is so 
important. We remarked here just a few moments ago about the dangers 
that are out there in terms of people being concerned about the 
violation of their privacy based on genetic information. Is this really 
a problem? This is a chart which shows that 72 percent of Americans 
think laws are needed to protect genetic privacy. The American people 
are really way ahead of us in the Congress on this issue. They 
understand that their genetic privacy is enormously important. They 
have an inner sense, which is well-founded, that their genetic privacy 
can be abused. We have 72 percent of Americans who think we need laws.
  This chart shows that Americans want their genetic information kept 
private. Ninety-two percent of Americans think their employer should 
not have access to their genetic information for the reasons I have 
outlined. If you don't have these protections and employers are able to 
find out that certain individuals they are employing have a greater 
proclivity to develop disease, there is a very good chance they will 
discriminate against those individuals. That has been the case.

[[Page 6832]]

  Eighty percent of Americans think their health insurer should not 
have access to their genetic information. The reason for that is a very 
sound reason, which is they believe if the insurer has that kind of 
information, the cost for the health insurance, which is 
extraordinarily high today, will go up even further. So the American 
people are way ahead of the Congress in getting this. With this, Mr. 
President, we will be meeting their particular needs.
  I want to show this chart. Francis Collins, for many of us in this 
body--and I think for the health community--is one of the great giants 
in health research. He is the person who has been at the heart and soul 
of the research on the Human Genome Project and in understanding the 
power of genes. He has made an absolutely extraordinary contribution in 
terms of science and public policy. He is a tireless advocate and a 
wonderful asset for all of us here in the Senate, on both sides of the 
aisle, in strong support for this legislation.
  As he points out:

       Discrimination in health insurance, and the fear of 
     potential discrimination, threaten both society's ability to 
     use new genetic technologies to improve human health and the 
     ability to conduct the very research we need to understand, 
     treat, and prevent genetic disease.

  That says it all. It talks about the danger, in terms of 
discrimination, and also about the ability to do the research. You 
could be discriminated against in terms of your job or in terms of the 
increased costs in your health insurance, or if you were involved in 
research, volunteering for research--the dangers that this kind of 
information would be out there and could be used against you.
  Mr. President, I remember--and it wasn't that long ago--when we 
listened to Dr. Collins. He was talking about the progress made in 
genetic research. They were talking about markers at that time. I think 
some of the earliest progress was made in terms of developing 
information about breast cancer and who had the proclivity to develop 
breast cancer. That was truly remarkable. Since that time--and it has 
only been a few years--we have seen that expand to prostate cancer, 
diabetes, bipolar, Alzheimer's, schizophrenia, and Parkinson's. Think 
of that. That list is growing virtually every day. We are eventually 
going to be getting health care systems that will say: If you have 
these kinds of diseases, we have the particular targeted kind of 
personalized medicine to help you either recover or to protect you in 
terms of the future. That is going to happen, Mr. President. It is 
going to happen sooner rather than later.
  This gives you an idea of how rapidly this kind of research is moving 
along and how this kind of research, in the hands of top-rated 
physicians and researchers who know how to treat these illnesses and 
sicknesses, will make a difference in terms of improving the quality of 
health care on the one hand. It is so dramatic, as is the danger of 
abuse by unscrupulous employers or health insurance companies on the 
other hand. That is what this legislation is really all about. That is 
why this is so important and why it has strong bipartisan support.
  In many respects, this is going to be one of the most important 
pieces of health legislation we pass in this Congress. We have other 
very important health proposals, but this will make an enormous 
difference in terms of the march for progress for good health care. We 
look forward to a strong vote.
  I yield the floor.
  Mr. ENZI. Mr. President, this is an exciting day. We are going to 
make a difference in health care for this country--not sick care; 
health care--and this will unlock a door that will allow people to get 
the kind of genetic testing where they can tell if something down the 
road might happen to them and prevent it, or at least weaken the effect 
of it.
  As time goes on, we will find more causes that will relate back to 
the genome and people will be able to immediately check if that new 
problem could relate to them and they can solve it before it happens to 
them. That is health care. That gets us away from sick care.
  I finished a tour in Wyoming. I called it the 10 stops for 10 steps 
of health care. I collected ideas from across this body on ways we 
could solve health care problems in America. It is 10 steps. They can 
be done separately. If they are done separately, each step will get us 
closer to lower costs and better access. If all of them are done, we 
will have every American insured.
  We need to get into prevention, particularly of chronic illnesses, 
and this bill will do it. Right now, people are afraid to get their 
blood tested. Sometimes they are forced to have their blood tested. 
Insurance companies sometimes want a blood test. That blood test will 
tell far more than it ever did in the history of the world, and that 
can have some dire consequences, except for this bill. This bill will 
protect people. This bill, first of all, ensures that if an insurance 
company takes that test and they find out anything, the person whose 
blood it was gets to find out everything. A lot of times they learn 
nothing. That is not fair. This will assure that doesn't happen.
  Another thing that happens is sometimes there is a little clause--
usually there is a clause--which says if it is a preexisting condition, 
the insurance company doesn't have to cover it. Well, this keeps that 
information of what could possibly happen to you from becoming a 
preexisting condition until it actually happens. That gives the 
individual the chance to do something about it first. If it doesn't 
happen, it isn't a preexisting condition. That is what this bill will 
do.
  Now, another bill we need to be working on, of course, that I cover 
in my 10 steps, is health information technology. That fits with this 
genome project. I have asked many times: How many of you have your 
medical records with you? You know, I have yet to have anybody say they 
do. With the technology we have in this country, everybody ought to be 
able to have all their health care and their genome on a card such as 
this, that they can carry with them everywhere.
  If the health IT bill passed, you could be on vacation from Wyoming 
out here in DC, and if something happened, that card would be readable 
out here. So a doctor here could know everything he needs to know to 
fix you as well as possible. That is a step we have to have in health 
care. We are very close to getting it.
  The old privacy issue crops up every once in a while. It isn't a 
matter of privacy. Your privacy needs to be protected and it is 
protected. There is always a problem of data security. Right now, 
records are in hospital files and in doctors' offices, and hundreds of 
people can come through there. Yes, the records are kind of protected, 
but people can look at them, and you would never know. If it is in 
health information technology and somebody gets to look at it, you will 
know. In order to sell health information technology, companies need to 
be working on a daily basis to make sure that information is secured. 
They are out of business if it is not.
  So that is not a problem, and that is a bill we need to put through 
in a process such as this. I think there is near unanimous agreement on 
both sides of the aisle that needs to be passed, and we ought to have 
the hour or hour and a half or 2 hours of debate on that and get that 
one done. Then people truly could have their information on a card they 
carry with them all the time. They could even add their own comments 
and the things they learn about themselves on their card.
  There is a better reason for passing it than that, though, and that 
is there are a lot of duplication tests these days. You go to one 
provider and he says: I have to do that test. It is an expensive test. 
He says: Because of this test, I need to send you to a specialist, and 
the specialist says: It is going to take so long to get that record 
over here, we are going to do the test over again. Some of these tests 
are $3,000, $5,000 or $10,000. The RAND Corporation says if we could 
eliminate the duplication of tests, we could save $140 billion a year. 
Even in this body, that is real money.

[[Page 6833]]

We need to do that. That would be another step. It is just as close as 
this genetic nondiscrimination has been for a long time.
  Of course, one of the rules around here is the first 90 percent of a 
bill takes 90 percent of the time, and the other 10 percent takes 90 
percent too. That is where we have been on this. But we have finally 
bridged the last hurdle. We have gotten understanding among all the 
people in this body--no small task--so everybody has been speaking 
favorably on this bill and with good reason. It has been a long time 
coming.
  I should mention that is another thing we kind of do that is a little 
unusual. We preconferenced with the other side. We have already talked 
to the people over there who will manage any debate on that side, and 
this bill is going to pass the House the same way it is passing the 
Senate. We have already checked with the White House, and it is going 
to be signed. So I wish to congratulate the chairman of the committee 
for the way he has been working on this bill. This is the way bills are 
supposed to be done, in my opinion.
  We have worked together on a lot of bills, and the ones that go 
through committee and we work out these details, wind up going through 
here in a hurry. We have learned something from being in a hurry. 
Previously, a lot of bills that have gone through here, we have let 
them go by unanimous voice vote. We didn't have the benefit of having 
that opportunity to explain this, consequently we haven't gotten much 
publicity. If the publicity doesn't go out on it, the people don't know 
about it. We are not interested in publicity for the publicity, but we 
are interested in people knowing what this bill does that will help 
them and that will encourage them to use the genome. That is why we 
need this.
  I congratulate Senator Kennedy for all of his work on this--kind of 
following the 80-percent rule. He and I are able to agree on 80 percent 
of everything. Then we pick out one issue and we can usually agree on 
80 percent of that and, more importantly, we can get the groups that 
are interested in that to agree with that same part. If you have groups 
out there that are opposing something, the bill probably doesn't have a 
lot of chance of getting through here. We covered quite a range of base 
between the two of us, and that makes it possible to bring a lot of 
people along.
  I thank Senator Kennedy, Senator Gregg, and Senator Snowe for their 
efforts to reach a bipartisan agreement on this bill. I particularly 
thank Senator Coburn for working hard to make this historic bill 
better. He did some important work, working with the business 
community, and his knowledge as a doctor, to make it better. I 
appreciate all of that effort. I appreciate the effort of the Senators, 
the effort of their staffs.
  I especially recognize the efforts of my HELP Committee staff 
director, Ilyse Schuman. The first job she had when she came to work 
for me 6 years ago was to work on this bill. I said it often takes 6 
years to get an idea through the Senate. I never believed that until I 
figured out that she has been working on it 6 years. It should not take 
us that long to get some of these ideas to stick.
  I also thank Andrew Patzman, who is my former health insurance 
staffer, who also played a major role in the development and forward 
progress of this bill.
  I thank Shana Christrup, Keith Flanagan, Brian Hayes, and Kyle Hicks 
of my staff for their hard work on this bill. In addition, I wish to 
thank some of Senator Kennedy's staff: Michael Myers, David Bowen, 
Lauren McGarity, and Portia Wu; also Stephanie Carlton of Senator 
Coburn's staff, who was absolutely essential; Bill Pewen of Senator 
Snowe's staff; Meg Hauck of Leader McConnell's staff; Jen Romans of 
Senator Kyl's staff, and Jay Khosla and David Fisher of Senator Gregg's 
staff, for their hard work.
  We get to come in and take the credit. They work on these for hours, 
days, even through weekends sometimes.
  I also thank Kim Monk, formerly of Senator Gregg's staff, and David 
Thompson, formerly of Senator Gregg's and my own staff; and lastly 
special thanks to Bill Baird of the Senate's Office of Legislative 
Counsel, and Pete Goodloe, formerly of the House Office of Legislative 
Counsel and now with Chairman Dingell's staff, because their 
extraordinary legal drafting and problem-solving skills and their years 
of hard work helped to make this bill possible.
  I thank everybody for their work on this.
  The PRESIDING OFFICER. The Senator from Maine is recognized.
  Ms. SNOWE. Mr. President, I yield myself such time as I may consume.
  It certainly has been an exceptionally long journey to reach this 
point where we are today in the Senate. We are at least in sight of 
enactment of this watershed legislation to prevent genetic 
discrimination. In fact, it will open an entirely new universe of 
infinite possibilities for Americans for years to come.
  I commend the majority leader for making this legislation a high 
priority for the Senate's consideration today, as well as the minority 
leader, Senator McConnell, for his concurrence and support, and my 
colleague, Senator Kennedy, the lead Democratic cosponsor and chairman 
of the HELP Committee. He has labored passionately and tirelessly so 
that every American can realize the protections embodied in the 
legislation. He marshaled this bill through committee, and we have 
endeavored to work together throughout this Congress on both sides of 
the aisle, in both bodies, to ensure that we would be able to be in a 
position in the Senate to vote on this legislation.
  Senator Enzi has been absolutely crucial, as well, to our success. He 
is the former chairman of the HELP Committee and is now the ranking 
member. He helped to obtain an array of support from so many Americans 
across this country, as well as organizations that include health 
providers, businesses, and health plans, which are central to providing 
a strong coalition for support.
  Similarly, Senator Gregg, former HELP Committee chairman in 2003, has 
worked to further the cause of defending Americans from genetic 
discrimination as well.
  Together, these colleagues--and more--helped the Senate on two 
separate occasions to overwhelmingly pass this legislation, in both 
2003 and 2005. It has been a long effort to realize this fruition 
today.
  It was a dozen years ago when I first introduced this legislation to 
protect individuals from discrimination in health insurance based on 
genetic information. At that time, there were several of us who 
recognized the tremendous threat posed by this practice, including 
those I have mentioned and former Senate majority leader, Senator 
Frist, and former minority leader, Senator Daschle, who at the time 
certainly foresaw that the misuse of genetic information would create a 
new form of discrimination.
  Yesterday, we attended the unveiling of the portrait of Senator 
Daschle. One of his former staffers indicated that it is appropriate 
that the time of that unveiling coincides with this legislation pending 
before the Senate. It was so important to him.
  Today, I am certain many colleagues, past and present, are delighted 
that we are in a position today to pass this legislation. We are on the 
brink of forestalling this discrimination before it becomes firmly 
entrenched.
  It is also important, as Senator Kennedy cited yesterday, given that 
this Friday is National DNA Day, which will mark the 55th anniversary 
of the publication of the landmark paper describing the structure of 
DNA. Since that breakthrough, our understanding of genetics has 
expanded exponentially. Over the past decade, our progress in 
understanding genetics has been moving at a dizzying pace, particularly 
following the completion of the Human Genome Project in 2003. That 
knowledge can work either for the benefit or harm to individuals, as we 
know.
  Today, my colleagues are dedicated to ensuring the meaning of the 
words of the Hippocratic Oath to ``do no harm.'' Today, the Senate 
will, for the

[[Page 6834]]

third time, ban discrimination based on genetics.
  Passage of this legislation by the House of Representatives was 1 
year ago, where Representative Slaughter and others worked to shepherd 
this legislation through three committee markups to an overwhelming 
House passage of 420 to 3. The President has called for enactment of 
the legislation to prevent this discrimination. Ninety percent of 
Americans believe insurers and employers should not be allowed to 
discriminate based on genetic information. Now it is the Senate's turn.
  We now have an agreement between the Senate, the House, and the 
President. Indeed, this bill represents a triumph of bipartisan 
collaboration and truth. Although there was broad agreement in 
principle to protect individuals from discrimination, some debated the 
language in our bill, taking issue with whether it would affect the 
policy that was intended. We have listened to the concerns, and we 
worked with them and responded. I thank, in particular, Senator Coburn 
for working with us in a collaborative fashion to resolve these issues 
and to allow the debate to proceed and finally vote on final enactment 
of the legislation.
  Too much is at stake to create uncertainty and ambiguity. The 
protections we enact must be effective. Having worked closely with both 
House and Senate colleagues, the legislation is nearly identical to the 
legislation passed in the House. We have addressed the remaining 
concerns that were raised by many, including the administration. I 
think it did not change in any way. The fundamentals of this 
legislation, in fact, probably acted to improve it in some categories. 
We have clarified that entities could communicate genetic information 
consistent with the HIPAA privacy regulations, the Health Insurance 
Portability Accountability Act. We worked to ensure that health plans 
may continue to utilize the presence of actual manifested diseases and 
issue rating coverages. That is the case today. We don't change that.
  We are at the threshold of a new era, without question. For the first 
time, we act to prevent discrimination before it has taken firm hold. 
That is why this legislation is unique and groundbreaking. In the past, 
Congress has acted to address discrimination, but with this bill we are 
making a statement and taking a stand and saying that we look to the 
future, and genetic discrimination will not be allowed to flourish, 
take root, and stand between Americans and the vast potential that 
genetic information can provide for the greater quality of life.
  Genetic discrimination is based on the unchangeable. By its nature, 
the basis on which one discriminates, with respect to genetics, is not 
readily apparent. In fact, the individual discriminating must search 
for information on which to act. So there is no question that it is a 
deliberate and willful effort. For example, if you see the breast 
cancer gene information on women, in order to deny women health 
insurance or raise the cost of that coverage, the question of your 
intent seems indisputably clear. It is not inadvertent but a willful 
discrimination against women with greater risk of breast cancer--women 
who should benefit from that knowledge and intervention, they should 
not be punished for it. Because these data must be available for such 
discrimination to take place, it is clear why this legislation not only 
prohibits the act of discrimination but rightly respects circumstances 
in which one may request a genetics test or possess an individual's 
genetic information. That is all the more critical today because there 
is an ever-expanding universe of such genetic data, information which 
could be utilized to improve health, reduce costs, and to extend lives. 
But it is absolutely useless if it, instead, discourages individuals 
from either participating in vital research or realizing the remarkable 
benefits that research is producing.
  Just a few years ago, it was virtually impossible to find genetic 
information on which to discriminate. You might be asked if you had a 
family history of a disorder. Today, the medical and scientific 
landscape has changed dramatically, and our laws must change with it. 
We have long known about a small number of genes that play a role in 
some diseases, such as Huntington's disease and the early onset of 
Alzheimer's. Yet the progress of discovery and study was maddeningly 
slow and tedious. The Human Genome Project changed all of that.
  Today, with new technology, we are witnessing an explosive increase 
in our understanding of genetics and human health. That growing 
genetics knowledge offers the historic potential of cures and 
customized therapies. Even more promising, genetic advances will enable 
us to actually prevent the development of diseases. But this potential 
and the billions spent in discovering genetic relationships and the 
development of treatments and preventive agents will certainly be in 
vain if Americans don't choose to access these advances. To do so, 
Americans must agree to undergo genetic testing. There are more than 
1,100 genetic tests today. So that only tells you the exponential 
growth that will be created and occur in the future. Would you undergo 
that testing if you knew the information about your genetic makeup 
could be used against you to deny you employment or health coverage?
  Mr. President, some say that kind of discrimination is but a future 
possibility, that we can afford to wait until genetic discrimination 
becomes manifest. But it already has done so. We have a veritable 
litany of examples of heartbreaking circumstances where individuals 
chose not to seek and utilize genetic information for fear of 
discrimination.
  I learned this from the real-life experience of one of my 
constituents more than 10 years ago. Her name is Bonnie Lee Tucker. 
Bonnie Lee wrote me about her fear of having the BRAC test for breast 
cancer, even though she has nine women in her immediate family who were 
diagnosed with breast cancer and she herself is a survivor. She wrote 
to me about her fear of having the BRAC test because she worried it 
would ruin her daughter's ability to obtain insurance in the future.
  Bonnie's experience certainly demonstrated how our expanding 
knowledge of genetics could truly be both beneficial and harmful. I 
recognize we simply must act to prevent the latter.
  Bonnie Lee is not the only one who has had that fear, as we all 
learned. Most disturbingly, when the National Institutes of Health 
offered women genetic testing, nearly 32 percent of those who were 
offered a test for breast cancer declined to participate, citing 
concerns about health insurance discrimination. That is a sad 
commentary today when we cannot maximize the value of scientific 
progress, we cannot apply it to those who would benefit most.
  We have documented cases where some attempted to mandate genetic 
testing. Even when this is designed to improve the delivery of health 
care, it must be recognized that once that information is disclosed and 
is unprotected, a future employer or insurer may not necessarily apply 
that information in such a benign way, as we have all learned.
  Yet we have recognized that if an individual accepts a genetic test, 
they may be able to take action as a result--preventing disease or 
premature death in the process or also reducing the burden of high 
health care costs.
  I recall the testimony before Congress, as Senator Kennedy, of Dr. 
Francis Collins, the Director of the National Human Genome Institute. 
He has been such an extraordinary leader in helping us realize the 
critical role genomics will play in human health and the arena beyond.
  In speaking of the next step for those involved in the genome 
project, he explained that the project scientists were engaged in a 
major endeavor ``to uncover the connections between particular genes 
and particular diseases to apply the knowledge they had just 
unlocked.''
  In order to accomplish this, Dr. Collins said:

       We need a vigorous research enterprise with an involvement 
     of a large number of individuals so we can draw the most 
     precise connections between a particular spelling of a gene 
     and a particular outcome.


[[Page 6835]]


  It is undeniably evident that this effort cannot be successful if 
people are fearful of possible repercussions from their participation 
in genetic testing. The bottom line that given the advances in science, 
there are two separate issues at hand.
  The first is to restrict discrimination by health insurers. The 
second is to prevent employment discrimination based simply on an 
individual's genetic information. Some of us saw this danger and the 
harm it can pose to millions of Americans, and that is why more than a 
decade ago, Representative Louise Slaughter and I introduced 
legislation in our respective bodies to ban discrimination in health 
insurance. At that time, the completion of the human genome seemed to 
be in the very distant future. But the science has certainly outpaced 
congressional action. As we know and as mentioned in the Senate on two 
different occasions, we passed this legislation unanimously on the 
floor of the Senate. Unfortunately, we could not get it beyond. So here 
we are today on the verge of doing it once again. This legislation does 
reflect the bipartisan bicameral efforts we are entering into: a new 
era of human health, that we have engaged in this process mightily over 
the last 16 months to forge an even stronger consensus on the 
fundamental agreements of genome.
  Since the time of the introduction of our first bipartisan bill in 
the Senate, we have worked to reiterate the agreements on which this 
legislation is based and to build an even stronger foundation for this 
legislation, for fundamental to this bill is establishing strong 
protections, both in health coverage and in employment, without 
unraveling established law.
  With regard to health insurance, the issues are clear and familiar. 
The Senate debated them previously in the context of consideration of 
larger privacy issues. Indeed, as Congress considered what is now the 
Health Insurance Accountability and Portability Act of 1996, we also 
addressed the issues of privacy of medical information.
  Moreover, any legislation that seeks to fully address genetic 
discrimination must consider the interaction and new protections with 
HIPAA. In fact, our legislation uses the exact same framework. As this 
bill makes clear, we do not create an onerous burden in recordkeeping. 
Specifically, we clarify the protection of genetic information, as well 
as information on the request or receipt of genetic tests from being 
used by an insurer against an individual. That is key because we must 
recognize that genetic information only detects the potential for 
genetically linked disease or disorder and does not equal a diagnosis 
of a disease.
  At the same time, it is also credible that this data be available to 
doctors and other health care professionals when necessary to diagnose 
or treat an illness. This is a distinction that begs our acknowledgment 
as we discuss protecting patients from potential discriminatory 
practices by insurers.
  On the subject of employment discrimination, unlike our legislative 
history on debating privacy health matters, the record regarding 
protecting genetic information from workplace discrimination is not as 
extensive. To that end, our bipartisan bill creates these protections 
in the workplace, and there should be no question that great harm can 
occur when genetic information is used inappropriately.
  As demonstrated by the Burlington Northern case, the threat of 
employment discrimination was very real and, therefore, it was 
essential that we take this information out of the realm of employers' 
reach before the use of this information becomes more widespread. In 
that instance, employees were tested without their knowledge of what 
the testing was going to be used for. Ultimately, it turned out it was 
for carpal tunnel syndrome. But there was no way they were required, 
mandated by the employer to undergo that testing.
  In this aspect, the Congress has to provide the protections to ensure 
that these discriminatory actions do not become widespread. On this 
aspect, the Congress has substantial employment case law and 
legislative history on which to build. Indeed, as we consider the 
remarkable growth in genomics and the harm which could result with its 
use, we agree we must extend current law discrimination protections to 
genetic information.
  We reviewed the current employment discrimination code and decided 
what remedies would be available for instances of genetic 
discriminations and if they would differ for those available in other 
instances under current law, such as the Americans with Disabilities 
Act, which are enforced by the Equal Employment Opportunity Commission.
  As a result, the pending legislation creates new protections by 
paralleling current law and clarifying the recent remedies available to 
victims of discrimination. Ensuring that regardless of whether a person 
is discriminated against because of their religion, their race, or 
their DNA, individuals will all receive the same protections under the 
law, as they should.
  Some have been concerned that despite clear prohibitions and 
reasonable remedies and penalties in disputes, there will be incentives 
to seek greater or lesser penalties justified under statute, and the 
legislation defines those boundaries. It will be the presence of these 
prohibitions and penalties which will ensure we do not see a growth in 
genetic discrimination. Indeed, I believe some who have questioned the 
necessity of this legislation may continue to do so, pointing to no 
overwhelming problem before us, that it is essentially a solution in 
search of a problem.
  The bottom line is this legislation will prevent and preempt harm. 
They will recognize in the final analysis, given the open-ended, 
infinite possibilities that will be created by genetics, that if we 
provide these protections, individuals will have the incentive to 
increasingly avail themselves of medical knowledge which will not only 
improve their health, but actually reduce health care costs.
  The fact is, for employers who have had concerns about this 
legislation, they should also recognize how it will significantly 
reduce health care costs. Isn't it essential to utilize our investments 
in advancing medical knowledge to prevent disease, disability, or even 
death? To the contrary. The fact is we need the incentives to ensure 
individuals will use genetic testing. So to that end, IBM pledged a few 
years ago not to use genetic information in hiring practices and 
deciding eligibility for health insurance coverage. This, again, 
demonstrated admirable understanding of how such discrimination can 
harm both the individual and business, and IBM has found that policy 
works.
  It has been more than 6 years since the completion of the working 
draft of the human genome. Like a book which is never opened, the 
potential of our expanding genetic knowledge will not be realized 
unless individuals can take advantage of it without adverse 
consequences.
  The pending legislation is a shining example of what we can 
accomplish when we set aside our partisan differences. In fact, we 
achieved remarkable success in this endeavor. I stated this earlier. 
The House of Representatives passed it by 420 to 3. That is an 
extraordinary tally reflecting, I think, the broad-based support this 
legislation enjoys.
  Today 46 Members of the Senate--Republicans, Democrats, and 
Independents--are sponsors of this legislation and a broad coalition of 
the Genetic Alliance that includes more than 600 member organizations.
  We are at a historic crossroads on a paramount issue that can make 
the difference between life and death for countless Americans. People 
deserve to have protections from genetic discrimination, and this 
legislation deserves swift enactment in the Senate.
  As science and medicine hurl headlong into the 21st century, we have 
a responsibility to ensure our laws keep pace to ensure the benefits of 
this extraordinary era of advancements that can be realized by everyone 
without penalty.
  Mr. President, I yield the floor.
  The PRESIDING OFFICER (Mr. Salazar). The Senator from Connecticut.
  Mr. DODD. Mr. President, I rise to address this issue as well. Before 
she

[[Page 6836]]

leaves the floor, I commend the Senator from Maine who has been long 
involved, going back more than 10 years on this issue. I had the 
privilege joining with her 10 years ago as a cosponsor of legislation 
in 1997. This is a colleague who has been deeply involved in this issue 
for a long time. I recognize her early contribution to this debate. I 
thank her for her comments.
  I rise today to express my strong support for the Genetic Information 
Nondiscrimination Act--better known as GINA--to urge its speedy passage 
by this body. When I first joined Senator Snowe in the fight for 
passage of this legislation, our Nation was at the dawn of a burgeoning 
genetic age, a time when we could only dream of the technologies that 
would exist 10 years later. Those genetic technologies are here now and 
here to stay.
  Genetic testing and genomic services are being advertised directly to 
consumers even as we speak.
  These ads are hard to read, but I am going to try to hold them up for 
people to see. Maybe others have put up similar ads. Here are some of 
the advertisements that appear in local newspapers that advertise 
services. One is for $99. I don't know what the cost is on this one. It 
is a BRAC analysis dealing with breast cancer. These are a few ads to 
show what is happening across the country.
  This is good news, but also dangerous in some ways because people are 
making decisions about their conditions and their futures sometimes 
based on very shoddy information. It is troubling to me people are 
being drawn into this situation without understanding the full 
implications.
  Genetic testing and genomic services are being advertised, as I said, 
to consumers. So the need for this legislation has never been greater. 
This is a very important moment for us to act.
  I also wish to take a moment to commend the leadership of Senator 
Snowe who, as I said earlier, was involved in this issue early on. 
Also, Senator Pete Domenici. He and I were involved with a bill in 1997 
as well, about the time I joined Senator Snowe on her legislation. 
Senator Domenici was very interested in this subject. And, obviously, I 
commend the work of Senator Kennedy and Senator Enzi. Their leadership 
and skillful negotiations have allowed for passage of this legislation. 
I commend Senator Harry Reid, the majority leader, as well for his 
support and commitment to the passage of this legislation. While he is 
no longer a Member of this body, I commend Senator Tom Daschle, who was 
very interested in this subject matter and offered legislation as a 
Senator, also as leader. While we recognized his contributions a day or 
so ago with the hanging of his portrait as a former leader of this 
body, he was deeply involved in this issue, and I would be remiss if I 
did not recognize his contribution as well, as a former Member of this 
body whose work enabled the Senate to achieve passage of this 
legislation in previous Congresses.
  Many of us on both sides of the aisle saw the need years ago for 
legally enforceable rules to maximize the potential benefits of genetic 
information and to minimize its potential dangers. But despite passage 
of the legislation in the Senate twice and the House once, it is still 
not the law of the land. Up until today, passage of this legislation 
has been blocked by one Senator. While I am heartened that efforts to 
obstruct passage of a bill so widely supported in the House and the 
Senate have been overcome, I am disappointed that the valuable 
protections provided by this legislation were denied to the American 
people until now.
  In the decade that has passed while this legislation has been 
pending, the sequencing of the human genome was completed, yielding a 
dizzying number of discoveries about genes associated with diseases and 
accelerating genetic research. Scientists are finding that nearly all 
diseases, including common diseases, such as diabetes and heart 
disease, have a genetic component. Determining the underlying genetic 
components of disease is fueling the development of new treatments and 
cures.
  As an aside, years ago, at Yale Medical School, I attended a briefing 
by the professionals there. They were doing studies on young girls, 
determining in twins the ability to detect very early on a genetic 
predisposition to breast cancer. A remarkable breakthrough was 
occurring with the wonderful news that we could possibly moderate 
lifestyles and improve them accordingly to avoid the onslaught of that 
dreaded disease. Obviously, there were concerns as well about such 
information becoming available without adequate protections with 
respect to insurance and employment opportunities as well as the 
conclusions people might make as a result of that information. But, 
nonetheless, I was very impressed with the work being done years ago in 
this whole area of identifying the genetic components of diseases.
  Additionally, genetic tests for hundreds of disorders are already 
available, with many more in the pipeline. Some of these tests predict 
the likelihood of developing a disease or condition, providing unique 
opportunities for interventions that may delay the onset or wholly 
prevent that disease from occurring. In the not-so-distant future, 
routine use of genetic information is going to give doctors an 
unprecedented ability to tailor treatments to the individual patient.
  However, the potential benefits of such advances in medicine will not 
be realized if people refuse genetic testing or do not participate in 
genetic research because they fear discrimination by an employer or by 
an insurance company. Indeed, surveys have repeatedly shown that 
Americans do fear the possibility of genetic discrimination. They are 
afraid of losing their jobs or health insurance coverage because their 
employer or insurance company learns of a genetic risk for a disease, a 
disease they do not currently have or may never get at all. The fact 
you have a predisposition does not in any way guarantee it is going to 
happen. It is merely a predisposition. Yet that information, obviously, 
could affect the cost of insurance available to you if insurance is 
available at all or whether you were going to get that job you would 
like to have. Many people are also afraid of affecting their children's 
ability to get jobs or obtain insurance.
  So without adequate protections against discrimination, people may 
forgo genetic testing, even in cases where the results have the 
potential to save their lives or the lives of their family.
  Our genetic code is the most personal of all information. We do not 
yet fully understand what it can reveal about us as individuals and 
about whom we may or may not become. All Americans have the right to 
use this information to make better health care decisions and not fear 
for its misuse.
  The potential for misuse, of course, is very real. State laws provide 
only a mixed bag of safeguards, leaving inadequate or no protection at 
all against discrimination for many of our fellow citizens. Existing 
Federal protections against genetic discrimination under the Health 
Insurance Portability and Accountability Act or the Americans with 
Disability Act are inadequate to comprehensively protect against misuse 
of genetic information.
  That is why this bill is so important, and why, again, the authors of 
it, the early sponsors of it, deserve great commendation by all. It 
would provide significant protections against the misuse of genetic 
information by health care providers and employers, ensuring that all 
Americans will not lose or be denied health insurance, jobs or 
promotions based on their genetic makeup.
  Specifically, it prohibits enrollment restriction and premium 
adjustment on the basis of genetic information or genetic services. It 
prevents health plans and insurers from requesting or requiring an 
individual take a genetic test. With respect to employment 
discrimination, the legislation prohibits discrimination in hiring, 
compensation and other personnel processes and prohibits the collection 
of genetic information. The legislation protects each and every one of 
us because we all potentially have a genetic makeup that makes us more 
susceptible to some kind of an ailment, and that possibility should not 
be an obstruction to an insurance policy or a job.

[[Page 6837]]

  While this legislation represents an enormous step forward and is a 
vast improvement over current law, many remain concerned about the 
measure's privacy protections, and we intend to continue monitoring 
them over time. Specifically, the legislation imposes important 
limitations on the collection of personal genetic information by 
insurance companies, but it would still allow them to collect such 
information without consent once an individual is enrolled in a health 
plan. While insurance companies are expressly prohibited from using 
this information for the purposes of underwriting, frankly, I remain 
concerned, once this information is collected, it may be difficult to 
control how it is used and who has access to it. As we have seen with 
numerous high-profile data breaches at the Veterans' Administration and 
the National Institutes of Health, the greater the number of people who 
have access to information, the greater the challenge of protecting 
that information.
  As this bill becomes law--and I genuinely hope it will and am 
confident it will--all of us will be following the implementation and 
the extent to which it ensures privacy is protected. We will not 
hesitate to revisit the issue in the future, as I suspect we may have 
to.
  I am the author of the Newborn Screening Saves Lives Act, along with 
my colleague Senator Hatch of Utah, which the Senate passed unanimously 
last December and is expected to be signed into law by the President in 
the coming days. In fact, I am told that might occur today. This 
legislation would expand and improve the number and quality of 
screening tests for genetic and metabolic conditions offered to 
newborns, which I feel so strongly about, throughout our country. These 
tests are critical because if a newborn tests positive for one of these 
rare conditions, treatment must begin immediately to prevent a lifetime 
of disability or even death. Because many of these conditions are 
genetic, the protections guaranteed under this bill are critical to 
preventing discrimination against these infants and their families by 
insurers or employers.
  The newborn screening legislation authored by Senator Hatch and 
myself, possibly signed into law today, will be enhanced tremendously 
by the adoption of this legislation because several of those tests, as 
I said, are genetic. So it is my strong hope GINA will be sent to the 
President for his signature.
  Again, my compliments to Senators Kennedy and Enzi and their staff 
for the work they have done on this, and, of course, to Senator Snowe 
for being a pioneer years ago in this area.
  With that, I yield the floor.
  Mr. COBURN, Mr, President, I am pleased that we have finally reached 
an agreement on the Genetic Information Non-discrimination Act, GINA, 
and that it will soon become law.
  April 2003 marked a scientific discovery significant enough to 
transform both science and society. April 2003 brought the announcement 
that a vast team of scientists had determined the exact sequence of the 
human genetic code and placed that information in public databases. 
This is an achievement the last generation could only dream about.
  Scientific understanding of the links between genes and disease will 
soon give rise to a flood of new answers and cures for those that 
suffer from disease. We are on the cusp of a new, unprecedented era of 
personalized medicine.
  As a practicing physician, I look forward to the better care and 
cures that I'll be able to give my patients with new technology 
developed from the use of genetic information.
  While there have been very few documented cases of genetic 
discrimination, GINA will eliminate the fear of genetic information. 
All Americans need to know that their predictive genetic information--
that they have no ability to change or control--will not be used 
against them in health care and employment decisions.
  These protections will finally be enacted with the passage of GINA 
today in the Senate, House passage to follow, and then finally a bill 
that can be signed by President Bush.
  Appropriately drafted legislation is an important key to unlocking 
the tremendous potential to save and improve lives through the exciting 
field of medical genomics. GINA has long been a bipartisan vision.
  I want to be crystal clear that I have supported the vision of GINA 
in the past, and I will support it again today.
  While I did place a hold on GINA for a while, that hold meant we 
weren't finished crafting the legislative language on GINA. I reserved 
my right to debate and perfect it--after taking the time to read and 
understand the language of GINA and the House action on GINA.
  It is like working on an appropriations bill--I support funding the 
government but that doesn't mean I support throwing $3.1 trillion into 
it. There is some work that has to be done before we send a bill to the 
President. As lawmakers, we have the responsibility to make sure we 
write laws that do exactly what we're telling the American people they 
do. I feel confident that today's version of GINA does that.
  I would note that when we finally started negotiating the substance 
of my concerns with GINA, we were able to get them resolved in 2 weeks. 
That was a much faster and more effective way of getting GINA done than 
what we've seen over the last year--slandering my reputation in the 
media and trying to slip the unfinished version of GINA into last 
minute appropriations bills.
  I am pleased that Senators Kennedy and Enzi recognized this and 
exercised leadership in bringing everyone to the table to get a 
solution that everyone could support. That's the kind of transparency 
and debate that the American people deserve.
  Today's Senate passage of GINA marks a significant step forward so 
that the American people may fully benefit from the promise of genomics 
and personalized medicine. GINA removes the barriers to the full 
potential of personalized medicine.
  Mr. ENZI. Mr. President, I yield 5 minutes to the Senator from 
Kansas.
  The PRESIDING OFFICER. The Senator from Kansas is recognized.
  Mr. BROWNBACK. Mr. President, I thank my colleague, Senator Enzi, for 
his work, the chairman for his work, and I particularly recognize 
Senator Snowe. I know Dr. Francis Collins, head of our Human Genome 
Project, and the key thing he has talked about from the outset of it 
was the need for this type of legislation which Senator Snowe has 
championed for a long time. I am delighted to see it passing here. 
There is strong support for it.
  I want to particularly point out a provision in the bill that was 
added on the House side by Representative Bart Stupak from Michigan, 
that would prevent the use of genetic information from unborn children 
and children in the process of being adopted. We can see a situation 
where somebody would apply for work, a lady who is pregnant, the child 
has Down syndrome, and that information being used against her in being 
able to get employment. That is built within the bill and I am 
delighted that is in there so we do not have that type of 
discrimination taking place as well.
  I have spoken previously about the very real pressure that exists in 
these types of situations, where people get a Down syndrome designation 
and then the pressure in the system to abort the child. Senator Kennedy 
and I have a bill that I am hopeful we will be able to get passed on 
nondiscrimination taking place in these situations, getting more 
information out to the parents and an adoption registry of people who 
want to adopt Down syndrome children, who want to adopt children who 
have these difficulties.
  At the same time, I think we need to know that today there is a real 
tragedy on a massive scale going on in the country of genetic 
discrimination. That is happening today in this country. We know that, 
today, 90 percent of the women who are pregnant with Down syndrome 
children, once they get that genetic designation of the child, the 
child will not be allowed to live--90 percent is the level that is 
taking place there, of that genetic information and its use. The 
numbers are similarly high for prenatally diagnosed children with spina 
bifida, cystic fibrosis, and

[[Page 6838]]

dwarfism. It has all been well documented by the American Journal of 
Medical Genetics and the journal Prenatal Diagnosis. So we have an 
increase in genetic testing, up to 120 different tests, and then a 
number of these children in this situation not being allowed to live.
  It is a bit personal with one of my staff members. Stacey Cervenka is 
here with me, who was born blind and is concerned that in the future 
our children are going to be prenatally diagnosed as being blind, deaf, 
and not allowed to get here. I do not think that is the kind of country 
we want to be in.
  That is why I am so happy this bill is passing, so we do not have 
genetic discrimination of people. I think it should extend to the full 
range of a lifetime of genetic discrimination. That is why I have 
offered a bill with Senator Kennedy to partially address this issue, 
the Prenatally and Postnatally Diagnosed Conditions Awareness Act, to 
ensure families get the necessary information in these situations and 
also the connection to the help and support services they need. It also 
provides for national registry for those willing to adopt children with 
these conditions.
  We all should be concerned when one's genetic information is being 
used for discrimination. We know we are better than that as a society. 
The real question is whether every life at every stage and every place 
has that value and is worth protecting and fighting for. I think it is. 
I think we as a body believe that. One's genetic composition does not 
determine one's value. Those with disabilities have the same inherent 
human dignity and value as everyone else. Genetic discrimination 
against anyone is unacceptable, particularly those who are next 
generation, our children.
  I might add, as a close, that as reported this week, the Governor of 
Alaska, Governor Sarah Palin, gave birth to a child named Trig, who 
happens to be a Down syndrome child. I wish to share what she said on 
this occasion:

       Trig is beautiful and already adored by us. We knew through 
     early testings he would face special challenges, and we feel 
     privileged that God would entrust us with this gift and allow 
     us unspeakable joy as he entered our lives. We have faith 
     that every baby is created for good purpose and has potential 
     to make this world a better place. We are truly blessed.

  What a great thought for all of us.
  I yield the floor.
  Mr. CARDIN. Mr. President, today is a groundbreaking day for millions 
of Americans and for the future of health care. I am pleased to 
strongly support the Genetic Information Nondiscrimination Act of 2007, 
a bill that I am proud to be an original cosponsor of.
  I also want to recognize the outstanding leadership of Senator Snowe 
and Congresswoman Louise Slaughter, who have been working on this bill 
for many years. The House passed its bill last year by an overwhelming 
margin of 420 to 3. Tomorrow will mark 1 year since that House vote. It 
is my hope that today, the Senate will pass this bill by a substantial 
margin as well.
  Years ago medical researchers began to discover the vast array of 
personal health information that could be determined through genetic 
testing, with the discovery of the human genome. By decoding the human 
genome, scientists have identified many of the gene sequences 
associated with disease, leading to new knowledge about the underlying 
causes of illnesses.
  Last November, Duke University researchers announced the discovery of 
200 ``silenced genes,'' a unique group of genes that they believe play 
a profound role in health status. These are genes that may increase the 
likelihood that a person will develop mental illness, cancer, diabetes, 
or other major diseases, or they may serve to prevent the development 
of certain diseases. There are approximately 1,000 different tests 
available now, and private insurers are beginning to include some 
clinical genetic tests as part of their health insurance benefits 
packages.
  Genetic testing holds extraordinary promise for individuals and for 
the doctors who treat them. It allows us to identify the predisposition 
to develop a certain disease. It allows us to decide which medical 
specialists to seek out, which preventive screenings to begin earlier 
than standards may recommend for the general population, which signs 
and symptoms of illness to be particularly alert to, and which 
diagnostic or predictive testing to pursue even when symptoms may not 
be present. It can be extremely helpful in cases, such as Huntington 
Disease, where gene testing is necessary to make a certain diagnosis. 
It also allows health care practitioners to make informed decisions 
about the optimal medical care to provide a patient with an inherited 
disease. And beyond the patients themselves, genetic testing can help 
predict the risk of disease to parents, siblings, and children.
  Over the years, Americans have come to realize what these 
developments would mean for them. Unfortunately, at the same time we 
also began to realize that genetic testing can be used against us in 
the workplace and by health insurers. For example, the results of the 
BRCA-1 test for breast cancer can be used to deny employment to a woman 
or to refuse to issue her comprehensive health insurance coverage. And 
so it is completely understandable that patients decline tests that 
could provide them life-saving information because they fear 
discrimination.
  What a waste of resources and medical information if, after all the 
work done by biomedical research and supported by billions of our 
dollars, the people who can benefit most from these discoveries do not 
take advantage of them.
  Just this week, a new report revealed the poor health status of 
Americans. Our health status is worse than it should be, and our health 
care costs are far higher than they need to be because we are not 
taking advantage of the technology available to us to fight disease. 
Passage of GINA will help change that.
  The Health Insurance Portability and Accountability Act of 1996 took 
some important first steps to protect employees and health consumers 
from discrimination along these lines, but current law does not go far 
enough. For example, now, employers may require clinical genetic tests 
as a qualifier for employment. Passage of GINA will change that also.
  Most State legislatures have taken action to prevent health insurers 
from discriminating based on genetic testing. My State of Maryland, for 
example, prevents individual and group health insurance policies from 
establishing rules for eligibility based on genetic information. 
Insurance companies are not permitted to require applicants or 
enrollees to take genetic tests or provide genetic information, or can 
they use genetic information for risk selection or for determining 
health insurance rates. Maryland law also prohibits insurance companies 
from disclosing information without the informed consent of 
subscribers. Many other States have passed similar laws.
  But because of ERISA pre-emption, millions of other Americans who are 
not protected by State laws still need our help. ERISA plans--those 
that are not fully insured but are instead self-insured and regulated 
by the Federal Government--are not covered by State laws. In Maryland, 
nearly 40 percent of insured workers have health insurance coverage 
that is not protected against genetic discrimination.
  Nationwide, the numbers are even larger. According to the Employee 
Benefit Research Institute, nearly 55 percent of all workers are 
covered by a self-insured health plan, and in larger firms, those with 
5,000 or more employees, 89 percent of workers are covered by self-
insured arrangements in 2006, up from 62 percent in 1999. So just in 
the last 8 years, we have seen substantial increases in the number of 
workers who are subject to genetic discrimination in health insurance, 
even though the States where they live and work have taken steps to 
outlaw it. That is another of many reasons why passage of this bill 
today is necessary.
  We know that the medical technology exists to help us defeat deadly 
and debilitating illnesses. It is time for Federal law to change so 
that Americans are free to use this technology.
  In the 109th Congress, while I was still a Member of the House of 
Representatives, the Senate passed this

[[Page 6839]]

legislation unanimously. I urge my colleagues to join me in strong 
support of this bill today and provide the American people with the 
protections they need to receive the quality health care they deserve.
  Mr. LEVIN. Mr. President, I support the Genetic Information 
Nondiscrimination Act. Medical science has made amazing progress over 
the past century and a half, and I hope that we can pass this 
legislation, which will allow our nation to harness the promise of 
personalized medicine through an understanding of individual genomes, 
while ensuring that Americans are protected against the misuse of such 
powerful knowledge.
  The past 140 years have marked an increasingly frequent series of 
scientific breakthroughs regarding that intricate and vital component 
of life called deoxyribonucleic acid, or DNA.
  In 1869, Friedrich Miescher found the microscopic substance that 
would come to be called DNA within the nuclei of cells. In 1952, Alfred 
Hershey and Martha Chase confirmed that DNA plays a role in heredity. 
The following year, James Watson and Francis Crick used images produced 
by Rosalind Franklin to propose what many believe to be the first 
accurate model of the structure of DNA, the now-familiar double helix. 
In 1977, Fred Sanger boosted the ``phi X'' bacteriophage into the 
limelight by making it the first organism to have its genome sequenced.
  With the advent of genome sequencing came the need for a common 
location to store all that information. Efforts to develop the Los 
Alamos Sequence Database, which was established in 1979, led to the 
establishment in 1982 of the GenBank to store genome sequences, which 
was jointly funded by the National Institutes of Health, NIH, the 
National Science Foundation, NSF, and the Departments of Defense and 
Energy.
  In 1990, the Human Genome Project, a bold new international 
collaboration, was established. While there is more work to be done, by 
about February of 2003, approximately 92 percent of the human genome 
had been sequenced. As scientists discover more about the human genome, 
we learn more about disease and illness. Understanding the relationship 
between our genes and disease has already led to improvements in 
screening, diagnosis, treatment, and even prevention where possible. In 
2006, George Church announced the Personal Genome Project, which seeks 
to record the complete genome of each volunteer. The ability to unlock 
an individual's genome could, combined with the knowledge developed 
through genetic research, allow for personalized medicine to a degree 
that would have been unheard of only years ago.
  Though there are many diseases we do not yet fully understand and 
though much additional research is needed, we have at our grasp the 
ability to make stunning breakthroughs in medicine by looking inside 
ourselves, to our own genes. With the incredible advances in modern 
medicine resulting from our new understanding of, and ability to 
analyze, our own genes comes great responsibility.
  Genetic information about an individual could be used for great good: 
it could hold the keys to identifying the best way to treat each person 
for their illnesses. However, we must be careful to guard against the 
use of this information to discriminate against those of differing 
genetic compositions. It would be absolutely unacceptable, for example, 
for an employer to use genetic information in making hiring decisions 
or determining pay. Likewise, it would be unconscionable to allow 
insurance companies, whose business combines both health and risk 
assessment, to utilize genetic information for the purpose of denying 
coverage for, or charging higher rates to, an individual merely because 
of that person's unalterable building blocks of life, their DNA.
  Probabilities and statistical measures derived from analysis of the 
human genome may be able to help us to be proactive and preventive in 
caring for patients. However, we must not allow discrimination on the 
basis of that information. There is always the chance that an 
individual will never develop a particular disease and, therefore, 
never incur the cost of treating the disease that never developed. It 
would be unjust to force an additional burden upon an individual as a 
result of the potential, as opposed to the fact, of developing a 
particular disease.
  Unfortunately, the risk of discrimination is real. Our history has 
shown us that some employers have discriminated on the basis of a range 
of impermissible categories. As a result, Congress has passed laws such 
as the Civil Rights Act, CRA, the Americans with Disabilities Act, ADA, 
and the Age Discrimination in Employment Act, ADEA. These laws have 
made significant steps in reducing discrimination in employment, but 
problems remain and Congress continues to work to pass additional 
antidiscrimination legislation to expand those protections.
  Likewise, the economics of the health insurance industry, in its 
current form, demand that Congress act to pass legislation to protect 
individuals from being discriminated against, perhaps because their DNA 
indicates a possible disease or disorder that the insurance provider 
would rather not cover. Or perhaps merely because people with certain 
genetic markers might require more attention and care--and therefore 
represent a higher cost to the insurer--than others. I believe we have 
a moral obligation as a Nation to ensure that all Americans have access 
to quality, affordable health care. Part of that obligation includes 
ensuring that no American is denied health care because of their DNA.
  We do not determine our own DNA. We are born with it. We cannot allow 
discrimination on the basis of such a fundamental aspect of life and 
one in which we had no choice. Beyond the genes that set the backdrop 
for our physical existence, we are, each of us, unique beings with the 
freedom to choose our paths in life. We must not allow the use of 
genetic information to constrain our freedoms.
  The Genetic Information Nondiscrimination Act provides essential 
protections to preserve our individual freedom and protect our rights. 
I support this bill and I hope that it will receive speedy passage in 
the House of Representatives and that the President will act quickly to 
sign this critical legislation.
  Mr. REID. Mr. President, passage of the Genetic Information 
Nondiscrimination Act, GINA, is the culmination of many years of work. 
This effort began over a dozen years ago and would not be possible 
without the work of many Members on both sides of the aisle.
  Senator Daschle worked tirelessly on this legislation during his time 
as Democratic leader. Senator Jeffords was also a dedicated champion of 
this bill. Passage of this legislation today would not be possible 
without the perseverance of the bill's sponsors, Health, Education, 
Labor and Pensions, HELP, Committee Chairman Kennedy, HELP Committee 
Ranking Member Enzi, and Senator Snowe. Senators Dodd and Harkin have 
also been central to this effort. Congresswomen Slaughter and Biggert 
along with Congressmen Miller, Dingell, and Rangel have been leaders on 
this issue in the House. Thanks to their collective commitment to GINA, 
this crucial piece of legislation is finally on the verge of becoming 
law.
  I also want to acknowledge the Coalition for Genetic Fairness and the 
many other organizations representing patient groups, medical 
professionals, scientists, researchers, families, and employees who 
advocated tirelessly on behalf of the protections offered by this 
legislation. They never let us forget about the urgent need to enact 
GINA and the dire consequences of neglecting this issue.
  There are too many individuals and groups to mention by name, but I 
do want to single out one individual in particular. Dr. Francis 
Collins, Director of the National Human Genome Research Institute, has 
been an important voice in this debate. Dr. Collins' groundbreaking 
work in advancing the science of genomics has led us to powerful new 
insights into the links between genes and common diseases such as 
diabetes, cancer, multiple sclerosis, and Crohn's disease. He has 
dedicated

[[Page 6840]]

himself to securing Federal protection against genetic discrimination 
so that the American people do not have to fear discrimination because 
they have had genetic tests or participated in genetic research.
  Every one of us stands to benefit from this landmark legislation. 
Genetic research is advancing at a remarkable pace. The sequencing of 
the human genetic code has already allowed doctors to develop better 
ways to diagnose, prevent, or treat some of the most dreaded diseases 
known to man. In 2007 alone, researchers discovered more than 70 gene 
variants associated with common diseases such as diabetes, 
cardiovascular disease, and cancer. Each of these discoveries suggests 
new options for both the treatment and prevention of these diseases. 
However, these exciting advances are being threatened by fears of 
genetic discrimination.
  This concern has been communicated to me in hundreds of meetings, 
letters, and phone calls from constituents.
  For example, a woman from Las Vegas who is affected by pulmonary 
hypertension, a continuous high blood pressure in the arteries that 
supply the lungs, wrote the following:

       Life expectancy for PH patients who do not receive 
     treatment averages 2.5 years, but with early, appropriate 
     treatment, some patients are now able to manage their PH for 
     twenty years or more. . . . GINA will allow patients with a 
     family history of PH to pursue genetic testing and receive 
     life-saving treatment without fear of related discrimination.

  And a man from Las Vegas, who suffers from Polycystic Kidney Disease, 
PKD, a life-threatening genetic disease affecting the kidneys, wrote:

       Fear of genetic discrimination keeps many PKD families from 
     testing for the presence of the disease or seeking treatments 
     that could prolong their kidney function. In addition, fear 
     of genetic discrimination has adversely affected many 
     clinical drug trials now underway in the PKD research field. 
     These clinical trials desperately need volunteers to 
     participate, but many with PKD are fearful their 
     participation in such trials will be used against them by 
     their insurers and/or employers.

  For genetic research to fulfill its true potential, patients need 
strong protections against genetic discrimination. GINA will establish 
strong protections against discrimination based on genetic information 
in health insurance and employment. As a result, patients can receive 
the best possible medical treatments without having to fear that 
genetic information will be used against them by their insurers or by 
their employers. The bill will also allow researchers to pursue the 
promise of genetic research by ensuring the confidentiality of genetic 
information by participants in clinical trials. GINA will enable all 
Americans to take full advantage of potentially life-saving genetic 
testing, and will pave the way for full realization of the promise of 
personalized medicine.
  The House will soon take up and pass this legislation, and I urge 
President Bush to sign this bill into law.
  The PRESIDING OFFICER. The Senator from Massachusetts.
  Mr. KENNEDY. Will the Chair let me know when I have 30 seconds left? 
I yield myself the remaining time.
  Mr. President, I thank Senator Brownback for reminding us about our 
bill dealing with Down's syndrome. It is a very worthwhile effort and 
one that is enormously compelling. I give him the assurance we want to 
work very closely with him. We are trying to get a counterpart in the 
House of Representatives and trying to get this done during this 
session. We thank him for his strong leadership in that area. He has 
been working on it for a long time.
  Mr. President, we are in a new era of the life sciences, and the 
truth of that statement can be seen in fields from medical imaging, to 
new biologic drugs and even to the use of DNA technology to improve our 
environment and reduce greenhouse gasses. But in no area of research is 
the promise greater than in the field of personalized medicine.
  With personalized medicine, patients will no longer have to receive 
treatments that work for the average person--but may not work for them. 
Instead, they will receive therapies precisely tailored to their own 
genetic makeup, with reduced side effects and far greater potency.
  The cost of developing new drugs is likely to be significantly 
reduced. No longer will a potentially promising drug be consigned to a 
dusty warehouse because it fails to work well on average, if it has the 
potential to treat patients with a particular genetic condition.
  A main barrier in the way of such extraordinary advances is the 
reluctance of patients to seek the benefits of this new science and the 
fear volunteering for this research.
  Three stories recounted to the advisory committee on genetic issues 
at the Department of Health and Human Services make the point.
  Tonia Phillips has the BRCA-1 mutation. He told the committee that 
based on her genetic risk for ovarian and breast cancer, she elected to 
have a hysterectomy and a prophylactic double mastectomy. Ms. Phillips 
works for a small company of just four people. After her surgery, the 
health insurance premium for the company increased by $13,000 year. Her 
employers asked her to switch to her husband's health insurance policy, 
and even offered to increase her salary if she would switch policies. 
She refused. The company then adopted a policy requiring employees to 
pay half their insurance costs. If GINA is passed, changing the terms 
of employment based on genetic information would be illegal.
  Paula Funk, a 33-year-old mother from Arkansas, told the committee 
that of her 24 female relatives, 13 have developed breast cancer. She 
decided to pay out-of-pocket and be tested for BRCA-1 anonymously. She 
tested positive, had a prophylactic double mastectomy, and plans to 
have her ovaries removed in the near future. Paula and her husband 
opened their own computer business but were prepared to abandon their 
plans unless they could get a group health plan for their two-person 
company, because they knew she wouldn't qualify for individual 
insurance based on her BRCA-1 status. Her concern now is for protection 
against discrimination for her two young daughters, Audrey and Anna, 
who will someday have to make the difficult decision about being 
tested. If GINA is passed, Audrey and Anna would not have to fear 
losing their health insurance based on a BRCA-1 test result.
  Judith Berman Carlyle, a 48-year-old woman with a family history of 
ovarian cancer, was afraid that she wouldn't be able to obtain health 
insurance if she tested positive for the variant of the BRCA-1 gene 
that is related to breast and ovarian cancer. Instead of being tested, 
she decided to have prophylactic surgery to remove her ovaries, 
believing that the surgery would be less likely to cause her to be 
dropped by her insurer. Later, having obtained health insurance, Judith 
decided to be tested for BRCA-1 before having a prophylactic double 
mastectomy. Her test was negative. If she had known this information, 
she might not have chosen to have her ovaries removed and might have 
opted for increased screening measures.
  Earlier this year, the Pulitzer Prize was awarded for an 
extraordinary series of articles on the promise and challenge of this 
new science. One article dealt with the fears of discrimination faced 
by those who undergo genetic tests, and the measures they take to 
protect themselves. Those articles included new revelations about the 
harm caused by the fear of discrimination.
  Victoria Grove, of Woodbury, MN, told how she concealed crucial 
information about her genetic tests from her doctor, for fear it would 
be used to deny coverage. As a result, she did not receive proper 
treatment for her lung condition.
  Kathy Anderson's parents refused to let her be tested for a genetic 
condition that affects blood clotting, for fear of discrimination. When 
Kathy was prescribed a common birth control pill, she developed massive 
clots--a life threatening illness that could have been avoided if she 
had had the genetic tests.
  For Judith Carlisle, the consequences of not taking a genetic test 
were tragic. She has a strong family history of breast cancer, but was 
afraid that a genetic test to detect a particular gene

[[Page 6841]]

mutation would provide proof to insurance companies and employers that 
she was a health risk. So she refused to take the test.
  Still, she worried about the risks of cancer, so she had a 
hysterectomy to prevent that risk. Only later, when she took the gene 
test, did she discover that her fears had been misplaced. The test 
showed that she had no elevated risk of cancer.
  We've also heard other stories in the years of debate on this bill.
  Phil Hardt is a grandfather in Arizona with hemophilia B, a bleeding 
disorder, and Huntington's disease. His human resources manager told 
him to withhold that information from his employer, or he would never 
be promoted or trained. In addition, his grandchildren would be denied 
health insurance because the genes they might have inherited.
  Rebecca Fisher is a mother and early onset breast cancer survivor 
with a family history of the disease. She recounted how her employer, a 
small, self-insured community hospital, was more concerned that the 
cost of her bone marrow transplantation and other health care had 
exceeded the cap for that year, than with her health or productivity as 
a worker.
  Thousands of other patients who refuse to receive the benefits of 
this new technology have similar stories. The time for delay is over--
and I urge my colleagues to pass this needed legislation.
  I again acknowledge the great work and effort of my colleague and 
friend, Senator Enzi, the work he and his strong staff have provided. 
We know we would not be here without his strong commitment to this 
legislation.
  This legislation was stuck for a time in the legislative cauldron of 
good works, but it was never lost. Through his efforts we had the good 
opportunity to work out some of the final differences and we have the 
opportunity to get it passed today. I am very grateful to him.
  Senator Snowe has been a long-time leader in this. Her leadership has 
been referred to and all of us who have been interested in this thank 
her for her long-time dedication and commitment to it.
  I want to mention some of the other people and say a final word. Dr. 
Collins, who has been the leader of the Human Genome Project, has been 
such a strong voice in passing this legislation; Sharon Terry, the 
Director of the Genetic Alliance; Kathy Hudson, who works at NIH and 
gave us excellent technical assistance; Representative Louise 
Slaughter, who has a long-time commitment to this program--I thank her 
and Michelle Adams, who has worked with her; Representative Judy 
Biggert and her staffer Brian Peterson; Shana Christrup, Keith 
Flanagan, and Ilyse Schuman--all have worked with Senator Enzi, and I 
thank them personally for their strong help working with me and with 
our staff; Kim Monk and David Thompson with Senator Gregg, who was a 
strong supporter of this bill when he chaired the HELP Committee--I 
thank him; Pete Goodloe from Congressman Dingell, Michelle Varnhagan 
from Congressman Miller; Cybele Bjorklund, who worked with Charlie 
Rangel and previously worked with us on our staff when we were 
fortunate to have her efforts here in the Senate; Kate Leone and 
Jennifer Duck had worked for Senator Daschle--they are not now here, 
but we acknowledge their work at an important time in this bill's 
history; Stephanie Carlton for Senator Coburn staff, her efforts are 
appreciated as well.
  On my staff I thank Portia Wu, Lauren McFerran, Holly Fechner, 
Michael Myers, Laura Kwinn, and especially David Bowen. All have been 
invaluable.
  This bill opens a new frontier in medicine, in which can read the 
genetic makeup of patients to stop diseases before they ever happen. 
This legislation opens the door to modern medical progress for millions 
and millions of Americans. It means that people whose genetic profiles 
put them at risk of cancer and other serious conditions can get tested 
and seek treatment without fear of losing their privacy, their jobs, or 
their health insurance.
  It is the first civil rights bill of the new century of the life 
sciences. This is the era of life science, with extraordinary 
possibility over these next years.
  With the passage of this legislation we take a quantum leap forward 
in preserving the values of new genetic technology and protecting the 
basic rights of every American. We will ensure that our laws reflect 
the advances we are making each and every day in medical science. The 
promise of new science will be in jeopardy if our laws fail to maintain 
adequate protections against abuse and misuse of private genetic 
information.
  It was a hard-fought battle to get here. This bill has been the 
product of a decade of dedicated efforts by Members of both sides of 
the aisle. I am honored to work with many of my colleagues, 
particularly Senator Enzi, Senator Snowe, and Congresswoman Slaughter 
on this bill. I hope it will get overwhelming support.


                           Amendment No. 4573

                (Purpose: In the nature of a substitute)

  Mr. President, I call up the Snowe-Kennedy-Enzi substitute, which is 
at the desk.
  The PRESIDING OFFICER. The clerk will report.
  The legislative clerk read as follows:

       The Senator from Massachusetts (Mr. Kennedy), for Ms. 
     Snowe, for herself, Mr. Kennedy, and Mr. Enzi, proposes an 
     amendment numbered 4573.

  (The amendment is printed in the Record of Wednesday, April 23, 2008, 
under ``Text of Amendments.'')
  Mr. KENNEDY. Mr. President, I ask for the yeas and nays.
  The PRESIDING OFFICER. Is there a sufficient second? There is a 
sufficient second.
  The yeas and nays were ordered.
  Mr. KENNEDY. I yield any time that remains.
  Mr. ENZI. I also yield back any time.
  The PRESIDING OFFICER. All time is yielded back.
  Under the previous order, the substitute amendment is agreed to.
  The amendment (No. 4573) was agreed to.
  The PRESIDING OFFICER. The question is on the engrossment of the 
amendment and third reading of the bill.
  The amendment was ordered to be engrossed and the bill to be read a 
third time.
  The bill was read the third time.
  The PRESIDING OFFICER. The question is on the passage of the bill, as 
amended. The yeas and nays have been ordered.
  The clerk will call the roll.
  The legislative clerk called the roll.
  Mr. DURBIN. I announce that the Senator from New York (Mrs. Clinton) 
and the Senator from Illinois (Mr. Obama) are necessarily absent.
  Mr. KYL. The following Senators are necessarily absent: the Senator 
from South Carolina (Mr. DeMint), the Senator from New Hampshire (Mr. 
Gregg), and the Senator from Arizona (Mr. McCain).
  The PRESIDING OFFICER (Mr. Nelson of Nebraska). Are there any other 
Senators in the Chamber desiring to vote?
  The result was announced--yeas 95, nays 0, as follows:

                      [Rollcall Vote No. 113 Leg.]

                                YEAS--95

     Akaka
     Alexander
     Allard
     Barrasso
     Baucus
     Bayh
     Bennett
     Biden
     Bingaman
     Bond
     Boxer
     Brown
     Brownback
     Bunning
     Burr
     Byrd
     Cantwell
     Cardin
     Carper
     Casey
     Chambliss
     Coburn
     Cochran
     Coleman
     Collins
     Conrad
     Corker
     Cornyn
     Craig
     Crapo
     Dodd
     Dole
     Domenici
     Dorgan
     Durbin
     Ensign
     Enzi
     Feingold
     Feinstein
     Graham
     Grassley
     Hagel
     Harkin
     Hatch
     Hutchison
     Inhofe
     Inouye
     Isakson
     Johnson
     Kennedy
     Kerry
     Klobuchar
     Kohl
     Kyl
     Landrieu
     Lautenberg
     Leahy
     Levin
     Lieberman
     Lincoln
     Lugar
     Martinez
     McCaskill
     McConnell
     Menendez
     Mikulski
     Murkowski
     Murray
     Nelson (FL)
     Nelson (NE)
     Pryor
     Reed
     Reid
     Roberts
     Rockefeller
     Salazar
     Sanders
     Schumer
     Sessions
     Shelby
     Smith
     Snowe
     Specter
     Stabenow
     Stevens
     Sununu
     Tester
     Thune
     Vitter

[[Page 6842]]


     Voinovich
     Warner
     Webb
     Whitehouse
     Wicker
     Wyden

                             NOT VOTING--5

     Clinton
     DeMint
     Gregg
     McCain
     Obama
  The bill, H.R. 493, as amended, was passed.
  Mr. KENNEDY. I move to reconsider the vote and to lay that motion on 
the table.
  The motion to lay on the table was agreed to.
  Ms. MIKULSKI. Mr. President I wish today to applaud the passage of 
the Genetic Information Nondiscrimination Act. I am proud to be an 
original cosponsor of this legislation that prohibits health insurance 
companies and employers from discriminating against individuals based 
on their genetic information. I would also like to take this 
opportunity to commend Hadassah for their relentless advocacy over the 
past 11 years on this important civil rights issue. Hadassah is a 
founding member of the Coalition on Genetic Fairness and has been a 
leader fighting to outlaw genetic discrimination.
  As a Senator from Maryland, the home of the National Institutes of 
Health and cutting edge companies like Celera Genomic, genetic testing 
and its implications for Marylanders and all Americans is especially 
important to me. This bill provides necessary protections so that 
people will take advantage of the potential that genetic testing can 
offer, without losing their job or their health insurance. Montgomery 
County in Maryland was the first county in the Nation to pass genetic 
nondiscrimination legislation. It has been a longer road for Congress. 
The Genetic Information Nondiscrimination Act was the first bill passed 
out of the Senate Health, Education, Labor, and Pensions, HELP, 
Committee in this Congress. I sit on the HELP Committee and we have 
worked on this bill since 1996. We have conducted five hearings on 
genetic discrimination and this bill has passed out of our committee 
three times. The Senate unanimously passed this bill in 2003 and 2005. 
It is time that this bill is signed into law.
  Thirty years ago, the idea of mapping the entire human genome seemed 
liked science fiction. But we now have a map of it. Fifteen years ago, 
the thought of testing individuals for a genetic predisposition to an 
illness seemed decades away, but here we are in 2008 with the 
technology and knowledge to do that. Someone with a genetic 
predisposition for a disease could begin preventive measures in diet 
and lifestyle, years before symptoms even appear.
  But with this new technology comes responsibility--the responsibility 
to protect the people that these theologies seek to help. What good is 
knowing that you have a genetic predisposition for diabetes if you lose 
your health insurance because of it? How does knowing that you may be 
more likely to develop breast cancer help if you can't get a job 
because of this information? Individuals should also have the 
information they need to make informed decisions about whether to get a 
genetic test.
  A person must not be denied insurance coverage or employment based on 
their predictive genetic information. That is why I support this 
strong, enforceable genetic nondiscrimination legislation that 
establishes meaningful remedies for individuals and their families--
remedies which act as powerful disincentives for insurance providers 
and employers to discriminate. I am proud the Senate has acted to help 
ensure that individuals can choose to get genetic tests that could help 
save or prolong their lives, without fear of discrimination in the 
workplace or by health insurance providers. We need to make sure the 
information from genetic testing reaches its true potential: that a 
woman can be screened for a genetic predisposition to breast cancer or 
a man can be screened for his risk for a heart attack without fear of 
their health insurance premiums rising or losing their jobs.
  Again, I want to thank Hadassah for all of their hard work on 
preventing genetic discrimination and I also want to thank Senator 
Snowe for her leadership on this bill.
  The PRESIDING OFFICER. The Senator from Michigan.

                          ____________________