[Congressional Record (Bound Edition), Volume 151 (2005), Part 2]
[Senate]
[Pages 2727-2728]
[From the U.S. Government Publishing Office, www.gpo.gov]




           GENETIC INFORMATION NONDISCRIMINATION ACT OF 2005

  Mr. ENZI. Mr. President, I rise to speak on the promise of genomics.
  ``Dazzling thrilling astonishing breathtaking''. Even for a group 
given to hyperbolic speech, the language my colleagues used in this 
Chamber 2 years ago to describe advances in human genetics is both 
extraordinarily intense and factually accurate. Little has changed 
since 2003. Indeed, little has changed in the 9 years we have been 
considering this legislation. What remains the same is that the 
tremendous promise of this fundamental scientific advance remains 
incompletely realized. I am truly concerned that, at the very time in 
healthcare that we need innovation the most, we tacitly accept 
limitations on the application of this ``tremendously powerful tool.''
  It is vital to understand that we have hurtled forward, over a 
remarkably short period of time, into an entirely new era of medical 
practice, one the majority leader believes will be characterized by 
``advances . . . more dramatic than any . . . I had the opportunity to 
. . . participate in over twenty years in . . . medicine''. Barely 50 
years ago, Drs. James Watson and Francis Crick completed the work begun 
by the 19th century Austrian monk, Gregor Mendel, when they discovered 
the double-helix structure of DNA, the substance of which genes are 
composed. Four nucleotides, a simple combination of phosphate, nucleic 
acids and sugar, are arranged in an infinite variety of pairs within 
genes that, in turn, are distributed amongst the 46 chromosomes, which 
constitute the normal human genome. Operating according to the 
instructions contained in the DNA, cells in the body produce proteins 
that control the expression of our individual heredity, e.g. color of 
hair and eyes, and determine, in part, whether we will be sick or well.
  Hardly 2 years ago, Dr. Francis Collins and colleagues at the NIH 
National Human Genome Research Institute completed mapping of the human 
genome, determining the exact location of the 3.1 billion base pairs 
that constitute our ``blueprint of life''. It is encouraging to note 
that, in an era where government programs are beginning to receive the 
scrutiny the public deserves regarding results, this program completed 
its Herculean task 2 years ahead of schedule. As representatives of the 
people, we now have the opportunity and the responsibility to help 
scientists and clinicians bring this basic research forward to the 
hospital, the clinic, even to our very workplaces and homes. There are 
many, both sick and well, who are counting on us to help put that 
blueprint to use.
  How does the science of genetics, simple and straightforward as it 
may be to the experts, translate into something with meaning to those 
outside the scientific community: the Congress; and the citizens whom 
we represent? In particular, why should the rancher in Cody or small 
businessman in Gillette care? I can think of three ways.
  First, our Declaration of Independence states that we are ``endowed 
by our Creator with . . . unalienable rights (including) life, liberty 
and the pursuit of happiness''. Clearly, the state of our health can 
determine how successfully we exercise at least two of those rights. 
For example, patient care can be much more individualized if it is 
based on an understanding of the human genome. Current medical practice 
applies the results from studies obtained in groups of patients to the 
treatment of the individual; within each group, however, there are 
patients who respond better or worse to the therapy offered, compared 
to the response of the group as a whole. The former may be undertreated 
by standard therapy--they could recover faster or more completely, 
while the latter may be overtreated--developing complications of 
therapy that may prove worse than the disease itself. Providers need a 
way to predict what an individual's response to treatment is likely to 
be so that a particular course of therapy can be modified intelligently 
and expeditiously. That flexibility in treatment, guided by an 
understanding of the patient's unique, genetically determined response, 
should result in better outcomes. Even today, oncologists are treating 
cancer patients with protocols that take into account genetically 
determined differences in how individuals absorb, metabolize and 
excrete drugs. Drug therapy for other diseases should show similar, 
clinically relevant variability. Similarly, cardiologists caring for 
patients with hereditary long QT-interval syndrome, a disturbance in 
heart rhythm that can lead to sudden death in healthy young people 
during exercise, are beginning to use genetic testing to help select 
patients for treatment or observation and to choose amongst the 
therapeutic options available--lifestyle changes, drug therapy and 
surgery--the ones most likely to be of benefit.
  Second, we recognize, based on long experience, that prevention is 
better than cure, both for the individual and for society as a whole. 
Early identification of a genetic predisposition to develop a specific 
disease can be crucial to an effective intervention, one that, quite 
often, will be less costly, too. For example, cystic fibrosis--an 
inherited disease producing life-threatening digestive and respiratory 
symptoms--is the most common, recessively inherited condition 
afflicting white American children. Scientists have identified over 700 
genetic variations of cystic fibrosis, some of which help to define the 
clinical manifestations of the disease. Treatment programs for cystic 
fibrosis that emphasize preventive therapies are associated with the 
best outcomes. Early identification of those at risk and more precise 
characterization of what those risks will be facilitates a more 
productive program of monitoring, more aggressive preventive care and 
focused treatment. Likewise, sickle cell anemia, an inherited 
abnormality in the production of hemoglobin, the molecule in the blood

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that carries oxygen to the cells, is prevalent in African Americans. 
Sickle cell disease, the most severe variant of this condition, carries 
a significantly increased risk of disability and early death through a 
variety of infectious and thrombotic complications. Changes in 
lifestyle and compliance with regimens of preventive care, e.g. 
prophylactic antibiotic therapy, are easier for affected individuals to 
tolerate if they believe that the risks and benefits really apply to 
them.
  Some might argue that diseases like these, though unquestionably 
worthy of public attention, represent a lesser national priority when 
compared to the other health care needs. In addition, other pressing 
domestic and international concerns--deficit reduction and national 
security--figure prominently, as they should, in the national debate. 
Wyoming has relatively few citizens at risk for some of the diseases I 
highlighted today, so most citizens of my state might, understandably, 
focus their thoughts elsewhere.
  I think there are two reasons why they don't. The people of Wyoming 
take appropriate responsibility for one another's well-being. They lend 
a hand whenever help is necessary, not in the expectation that to do so 
will be of direct benefit to them, but because it is, simply, the right 
thing to do. There is a direct benefit, however, to be realized. Full 
implementation of the results of the human genome project will have a 
revolutionary impact on diseases that are of concern to all of us, in 
Wyoming and across the United States, regardless of our age, gender, or 
ethnicity. Already, experts recognize the practical and the potential 
applications of genetic research to the diagnosis and treatment of 
cancer--e.g., breast, colorectal and ovarian--heart disease, 
degenerative neurological disease--e.g., Alzheimer's and Parkinson's--
diabetes, and asthma. No longer is it science fiction to anticipate 
that primary healthcare providers will, by combining environmental risk 
assessment and education with genetic evaluation, be able to develop, 
implement and monitor a comprehensive, life-long health plan that 
maximizes wellness.
  Third, and, perhaps, most important of all, Americans must recognize 
that they have a civic responsibility not only to care for their own 
health, but to participate in the research yet to come that moves the 
science of healthcare forward for everyone. Those of us, including 
myself, who have contributed to this discussion over the last 9 years 
have all noted the remarkable ``explosion of knowledge'' and the 
``great strides'' in healthcare that have resulted from research 
already performed. More importantly, though, we recognize that, while 
the science of human genomics has ushered in a new era of vast 
potential, that promise has not yet been fully realized. There is much 
that remains to be done to ``unleash the power'' of this science to 
change permanently the practice of healthcare for the better. Clinical 
trials are still necessary, to validate reasonable hypotheses and to 
determine where innovations should fit into practice. Once integrated, 
the actual effect of these innovations must be accurately and precisely 
assessed, recognizing that experience is the great teacher. We must 
work to foster a culture of enlightened self-interest in the American 
people, underscoring their altruistic motivation to do what's right. 
Finally, we have a responsibility to encourage our fellow citizens to 
participate fully in their own healthcare by working with their 
providers to incorporate advances in science into their personal health 
plans as quickly as possible.
  Inherent in discharging this responsibility is the need to remove 
barriers to action. Thomas Jefferson said, ``Laws and institutions must 
go hand in hand with the progress of the human mind.'' No better 
example of this truism exists than the challenge we face in fulfilling, 
completely, the promise of the genomic revolution. Our objective is 
clear: to encourage people to seek genetic services, and to participate 
in essential genetic research, by reducing fears about misuse or 
unwarranted disclosure of genetic information.
  I applaud my colleagues in voting for the Genetic Information 
Nondiscrimination Act of 2005.
  The PRESIDING OFFICER (Mr. Isakson). The Senator from Oregon.

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