[Congressional Record (Bound Edition), Volume 149 (2003), Part 10]
[Senate]
[Pages 13231-13232]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2003

  Mr. FRIST. Mr. President, last Wednesday marked an important day in 
the progress of medicine and national policy. I am pleased to note that 
on that day the Health, Education, Labor, and Pensions Committee voted 
unanimously to report out S. 1053, the Genetic Information 
Nondiscrimination Act of 2003.
  For more than 6 years, I have had the opportunity to work with 
Senators Snowe, Jeffords, Enzi, Gregg, Hagel, Collins, and DeWine on 
this important legislation. I believe with the invaluable contributions 
of Senators Daschle and Kennedy that we brought to the forefront of the 
congressional agenda solid legislation that will provide patients with 
real protection against genetic discrimination in health insurance.
  I will first express how much I appreciate the work of my colleague 
on this issue, the Senator from New Hampshire, Mr. Judd Gregg, who is 
chairman of the Health, Education, Labor and Pensions Committee. It is 
his commitment and dedication to this issue that is primarily 
responsible for getting us to this point of reporting out this Genetic 
Information Nondiscrimination Act.
  At this juncture, I also commend President Bush for his commitment to 
ensuring strong protections against genetic discrimination and for 
calling attention to this critical matter.
  We began work on this issue many years ago. It was interesting when 
we started this work--well, not many years, about 5 years ago. But when 
we started this work, it was way off in the future that we anticipated 
decoding of the human genome would actually occur, but we were able to 
identify the problem, recognizing that the advances in technology, this 
unraveling of the genetic code, which was so revolutionary in thought 
at the time, would indeed introduce new challenges to the way we 
handled health information.
  So we jump a few years later and now we can look back, and over the 
last few weeks the complete decoding of the human genome has been 
announced. That is about three billion bits of information that we did 
not know about a year ago. Now we know.
  Just last month, America celebrated two wonderful milestones in 
medical science. Scientists working in collaboration with the National 
Human Genome Research Institute at the NIH, National Institutes of 
Health, published a final draft documenting that entire sequence of the 
human genetic code. The publication occurred more than 2 years ahead of 
schedule. I should also add, it came under budget. There are very few 
things we do in Washington that are completed ahead of schedule and 
under budget. This tremendous discovery, this unraveling of the genetic 
code of the human genome, is one of them.
  The publication of this occurred more than 2 years ahead of schedule, 
as I mentioned, but also almost 50 years to the day from the historic 
publication by two icons in terms of science, Dr. James Watson and Dr. 
Francis Crick. The helix, called the DNA, which is a double helix--all 
of us have seen pictures of almost a figure 8, a three dimensional 
helix which was described now a little over 50 years ago. The dazzling 
accomplishment of this decoding of the human genome has ushered in a 
new era which we will see unfold over the next few years, next 5, 10 
years, which will enable us to better understand diseases, how the 
human body functions but, importantly, how diseases affect that 
functioning of the human body.
  This decoding has also begun to expand our understanding of human 
development throughout life, health, and disease processes. 
Specifically, the discovery of disease genes--that is, variations in 
the genetic code that can be associated with the manifestation of 
symptoms and what becomes disease--brings promises for hope for 
ultimately not just prevention of those diseases but also treatment and 
cure. Scientists very likely will be able to design drugs to treat 
specific genes or the manifestation of these genes. In my own field of 
heart and lung transplantation and other types of transplantation of 
tissues, organs may be specifically engineered for use in the field of 
transplantation. Even preventive care, where we are woefully inadequate 
in terms of knowledge but also in application of that knowledge today, 
may potentially be based in large part to genetic testing.
  This potential explosion of knowledge, which is exciting to me as a 
scientist and as a physician, is also associated with risk. When I 
first joined my distinguished colleague from Maine, Senator Snowe, in 
this effort several years ago, almost one-third of women who were 
offered a test for breast cancer risk--and this is a genetic test--at 
the National Institutes of Health declined. They said, no. They say: I 
understand that test may be able to tell whether I will get breast 
cancer but I decline.
  You ask why. They say: The only reason, and the reason I say no, is 
the risk that information will be used by a health insurance company or 
an employer against me. What if that information got out?
  I strongly believe then, as I do now, that we have an obligation, a 
responsibility, to protect people from the threat that their genetic 
information can be used against them in any way. I

[[Page 13232]]

would say that from a medical standpoint, and from a societal 
standpoint, this is a moral responsibility. It is a practical 
responsibility. If unchecked, the fear of genetic discrimination will 
prevent individuals from participating, whether it is in research 
studies, or in the gathering of information that can be used and 
applied more broadly to people, either in this country or indeed across 
the globe. It will prevent people from taking advantage of the new 
technologies which can be and, in fact, almost certainly will be 
lifesaving. It will keep people from getting tests, even from 
discovering that they are not at risk for genetically related diseases. 
Also, the fear of genetic discrimination has the potential to prevent 
citizens from making informed health decisions.
  If one does not have that information, they simply are not going to 
be able to make informed health care decisions, whether it is in 
lifestyle or to determine whether or not they need an annual cardiac or 
heart catheterization once a year, or if they have the gene for breast 
cancer so that they would go and get mammographies more often. If they 
refused to get the test because of the fear of the discrimination, 
clearly they are not able to make informed health decisions for 
themselves.
  In the past, Congress has taken on the battle against broad 
discrimination in all sorts of legislation. We think back to the 1964 
Civil Rights Act; to 1990, the American with Disabilities Act; more 
recently to the Health Insurance Portability and Accountability Act.
  Today, we extend those protections to citizens with genetic markers, 
a move that has the power, I would argue, to save lives.
  As I have implied, this whole field of genetic research and testing 
will undoubtedly unleash thrilling advances and better health care. It 
will lead almost certainly to cures for diseases that we cannot even 
imagine can be cured today. The potential medical advances that emerge 
from our knowledge and our understanding and that definition of the 
human genome that was spelled out just a couple of months ago, I know 
will be more dramatic than the changes I have seen in over 20 years 
practicing medicine, that I witnessed in my own medical career. 
Clearly, there will be much more advancing and pioneering than my dad 
saw after 55 years practicing medicine from about the 1930s to the 
1980s.
  As we greet the future, the excitement, the thrill of discovering 
what emerges from this new body of information, this definition of the 
human genetic code, we have a responsibility in this body to protect 
our body politic. I am pleased by the progress we have made thus far.
  I come to the floor to speak today because I have watched this 
debate, I have watched this discussion, and I have seen in a bipartisan 
way in the Health, Education, Labor, and Pensions Committee tremendous 
progress being made this past week, and hopefully it can be made in the 
Senate as we look at discrimination in genetic testing.
  I congratulate my colleagues on their persistence and dedication to 
the issue. It gives us an opportunity, in advance of there being a 
problem, in advance of the new genetic tests, to address that potential 
for discrimination which, in turn, if it occurred--and I believe there 
is a high likelihood unless we act--would be a disservice to mankind.
  This legislation stands squarely on our time-tested civil rights laws 
establishing comprehensive, consistent, practical, reasonable, and fair 
protections. I strongly support this compromise bill. I am speaking 
today primarily because it is a compromise bill taking the very best 
out of the pieces of legislation that have been proposed in the past. I 
strongly support this compromise bill. I look forward to its swift 
passage.

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