[Congressional Record Volume 149, Number 78 (Friday, May 23, 2003)]
[Senate]
[Pages S7121-S7122]
From the Congressional Record Online through the 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 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
[[Page S7122]]
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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