[Congressional Record (Bound Edition), Volume 146 (2000), Part 9]
[Senate]
[Pages 12242-12243]
[From the U.S. Government Publishing Office, www.gpo.gov]



                             HUMAN GENOMES

  Mr. DOMENICI. Madam President, isn't it interesting. I came to the 
floor today to discuss a completely different subject. I want to do so 
briefly. It is very difficult to do this because, frankly, there is a 
great story about it in the United States today.
  The National Institutes of Health announced that they have just about 
mapped the human genome, which means in the future, at a minimum, every 
known dreaded disease of mankind will be located in our chromosome 
system by the mapping of the human genome. Where scientists used to 
take 25 years and devote an entire science department to try to locate 
where multiple sclerosis came from within the human body, in short 
order all of those dreaded diseases will be defined in reference to the 
genetics of the human body, and mutations of that will be discovered as 
the reason for the diseases. What an exciting thing.
  I have not been part of the ceremony, but I started the genome 
program in Congress. I am very thrilled to find that it has resulted in 
what we predicted in 1996 and 1997.
  I want to tell the Senate a rather interesting story of how the 
genome got into the National Institutes of Health and how today it is 
still one-third in the Department of Energy.
  A very good scientist who worked for the National Institutes of 
Health named Dr. Charles DeLisi had been urging the National Institutes 
of Health to get started with a genome program. He had described its 
greatness in terms of it being the most significant wellness program 
mankind had ever seen--wellness. They defied his request and would not 
proceed. He said: I quit.
  He meandered over to the Department of Energy, which had done a lot 
of research on genetics because they were charged with discerning the 
effect of radiation from the two atomic bombs that had been dropped on 
Japan. He joined their department.
  He came to see the Senator from New Mexico, who worked for the 
laboratories hard and long, and said: Why don't we start a genome 
program in the Department of Energy since the National Institutes will 
not do it?
  I am trying to recap for my future by writing it, and I am putting it 
together.
  But what actually happened was I proposed that the genome program 
start, and that it start in the Department of Energy.
  Guess what happened. The National Institutes of Health heard about 
it. All of their reluctance disappeared because somebody was about to 
give the genome project to the Department of Energy. What an easy patsy 
they became.
  They came to the office. Then we went to see Lawton Chiles, the 
Senator from Florida, who appropriated the science part of this budget. 
They said: Let's do it together--a little bit for DOE, and a whole lot 
for NIH. I said: Whatever it takes, let's do it.
  Within the next year--1997--we funded the first genome money without 
a Presidential request. It had come forth, I think, in the Labor-Health 
and Human Services bill that will be before us today at somewhere 
around $20 million, maybe $29 million.
  We funded it for another year. Finally, the President of the United 
States funded it in his budget in the third year of its existence. Ever 
since then, it has been funded in a President's budget and by us. It is 
up around $129 million or $130 million. I think it is something like 
that. But they predicted that within 15 years they would map the entire 
chromosome structure of the human being. Today, they made an 
announcement. I don't think they are really totally finished. But there 
is competition afield as to how to use it, and the private sector group 
is purportedly moving more rapidly.
  The NIH and another group of scientists announced at the White House 
to the American people and the world we have essentially mapped the 
chromosome system of a human being. We now know the site, the location, 
the map is there, for discerning what the genes contain with reference 
to human behavior and human illness.
  I predict, as I did at least five times before committees of the 
Senate from the years 1987 to about 1994, where I appeared more often 
than any other committee urging we fund the genome project, we are 
ready today to say the map is there; let's get with it and start using 
it. We will have breakthroughs of enormous proportions with reference 
to humankind's illnesses.
  I am neither scientific enough nor philosophical enough to know what 
else it will bring. When we do something of this nature, we bring other 
questions. There will be problems of abuse, of genetic mapping to 
decipher people in a society prone to cancer and who therefore will not 
be hired, unethical research using mutations in ways not good for 
humankind.
  Incidentally, we were aware of that problem from the beginning. 
Senator Mark Hatfield said: Let's set aside 5 percent--that is my 
recollection--of the funding to use for education and ethical purposes 
to try to make sure we are on track. I have not followed that well 
enough. I am not exactly sure how that is going. We still have some 
legislating to do in the area regarding uses in research, and 
legislating with reference to an insurance company taking a whole group 
of people and saying: We are not insuring you because we know something 
about your genetics.
  Those are serious problems. They are bigger than the problem itself. 
They could make America angry at this program. We don't want to do 
that. We

[[Page 12243]]

want the American people happy that we have put this into the hands of 
human beings, for wellness purposes. That is our desire, so that people 
not get dread diseases, or we find out how to cure them when they get 
them. Genome mapping ought to be heralded as something we did right. I 
don't know where it goes.
  I close today by thanking Dr. Charles DeLisi for bringing this idea 
from the NIH to my office. Senator Lawton Chiles, now deceased, is the 
one to whom NIH ran, saying, let's get something going. He and I worked 
on these projects well together. We got it going in an appropriations 
bill. I thank him, and I thank many Senators who worked on this, 
principally in the committee, whose legislation is pending. That is the 
subcommittee that did most of the work and helped it along, more than 
any other group in the Congress.
  I am delighted to have a chance to speak today.
  The PRESIDING OFFICER. The Senator from Alabama.
  Mr. SESSIONS. Madam President, I love to hear the story Senator 
Domenici tells about helping to make this human genome project a 
reality. He shared it with me some time ago. It is one of those success 
stories we can feel good about. It does provide opportunities for 
health improvement in America in an extraordinary way.
  We heard recently remarks by the head of the National Cancer 
Institute who described one form of leukemia that had been diagnosed, 
and that certain types of treatments cured 60 percent of the leukemias 
and 40 percent were not cured; they didn't know why. But after the 
human genome study, they found out there were actually two different 
kinds of leukemias, and the treatment served one and not another.
  A lot of good breakthroughs are on the horizon, I am convinced.

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