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Male Speaker: Biology was going to drive the kinds of technologies
that we would develop.
Male Speaker: The result of this would be the human genome.
Could this be done?
Female Speaker: This is a major science project.
It will have lots of implications.
Male Speaker: To find out how to cure most of the tremendous
maladies of human kind.
Male Speaker: Mapping and sequencing the human genome would
require a huge project.
Now, the Department of Energy was accustomed to such projects and it was ready to sign
on right away.
But biologists in the United States who tended to work in kind of a cottage industry were
highly resistant to anything that smacked of big organization, major goals, and high
technology.
So they opposed the project.
Nevertheless Robert Sinsheimer, who was then the chancellor at the University of California
Santa Cruz, thought it was worthwhile, at least to consider this.
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Male Speaker: I went to one of the first meetings that was
ever held on the Human Genome Project in Santa Cruz.
In the spring of 1985, Rob Sinsheimer had called this meeting because he was thinking
about building a center to sequence the human genome.
Male Speaker: We invited Lee Hood [spelled phonetically].
We invited Willy Gilbert, Dave Botstein, John Sulston, essentially all the leaders in the
sequencing area, to consider what could be done.
Initially I think there was a great deal of skepticism.
Male Speaker: When I received the invitation, I thought,
this is totally silly.
What an absurd idea.
You know, we sequence a million bases, but we're talking about three billion bases.
Male Speaker: Once you started to think about a physical
map, that that might be feasible, the idea of a sequence stopped being so crazy.
It was one of these things that was on the table, was going to take forever, but who
knows, maybe there'd be better technology.
Male Speaker: We talked about where the technology really
was at that time and I realized that in fact the underlying technology, Fred Sanger's techniques
and our techniques, were capable of sequencing about a hundred thousand bases a year per
person if intensely applied.
And when I left the meeting, I became convinced across that time that it was technically feasible
to sequence a human genome.
And what I saw was basically that the problem was purely an industrial scale problem.
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Male Speaker: Most people in the scientific community said
that's just machine building.
That's not real science.
And I don't think that there were many people who had any intimation at all of the kind
of revolution that, for instance the DNA sequencer, just by itself, never mind all the other instruments
that had been developed, that that would have.
Male Speaker: Because the gear heads understood full well
that what they were doing, was they were deferring asking a specific narrow biological question
because they wanted to ask a vast biological question.
And they knew that it might take 10 years to get the tools to do it.
Male Speaker: I remember one afternoon when three or four
of us were sitting around and kind of the whole vision of how you should do this just
came out.
I mean, one person said, "Well, rather than four different lanes with radioactivity, let's
use four different fluorescent groups and we can mark each of the four different bases
with those fluorescent groups."
And another said, "Why don't we use capillaries to separate the DNA fragments with each fragment
being marked by the identity of its terminal base and why don't we have a laser system
at the end that can read out the colors as they migrate by."
In that one afternoon, we kind of laid out a lot of the different ideas and what was
really marvelous about the DNA sequencer was that it required the integration of chemistry,
of biology, of engineering and of computer science.
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Male Speaker: The biological community was split about it,
I think.
There were those who were really enthused and saw this could move biology into a new
era.
And there were those who didn't want to go into a new era.
They liked biology the way it was and were very much opposed to the idea of big science
entering biology.
Male Speaker: The biology community in the United Stated
could not expect to determine whether or not the nation proceeded with a human genome project.
The reason was that the Department of Energy had gained the support for the project of
a very powerful U.S. Senator, Pete Domenici of New Mexico.
Male Speaker: I have two giant great national laboratories
in New Mexico, so even in '83, '84, '85 timeframe, I was used to having presentations made on
big science projects.
One of the scientists from Osarose [spelled phonetically], Dr. Charles DeLisi, he came
to my office as a DOE person telling me about a great opportunity.
It didn't take me very long to just get committed to the idea.
Hook, line, and sinker.
Male Speaker: Quite frankly, I thought that scientific community
was going to fall solidly if I didn't do it.
The leaders in the community would have, at that point, were very deeply committed to
seeing this happen.
And they would have fallen solidly behind DOE if NIH decided to bow out.
Male Speaker: When I heard that, my reaction was not on
my watch.
[laughs] It forced the DOE doing what it wanted to do but from my point of view this was almost
some of the patrimony at NIH.
We had a huge investment in medical genetics starting in the '50s, animal genetics, human
genetics, and it had been moving forward.
Every institute was doing something in medical genetics.
Male Speaker: And low and behold the NIH went to Lawton
Chiles, who was a chairman of an appropriation sub-committee that funded the National Institutes
of Health.
And instead of arguing, you will note that from the beginning it was a funding program
for DOE and NIH so the great compromise was: don't try to take it all, DOE.
Let's go at it as partners.
We got together and without authorizing legislation, kind of a great feat, it was appropriated.
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Male Speaker: The critics charged that this would amount
to a $3 billion crash program that would do nothing more than produce tedious, routinized,
and intellectually unrewarding work and that would, perhaps more important, deprive other
parts of biology of necessary funding.
Male Speaker: What really did turn the tide was, there was
a national academy committee set up to interrogate the pros and cons of the Human Genome Project
headed by Bruce Alberts.
Male Speaker: He was completely uncommitted on the question
of whether the sequencing was a good idea or not.
So he was truly neutral.
So he was credible to all the parties, so he was the perfect choice.
Male Speaker: Once you realized that the project was feasible,
technologically feasible, and that the ultimate benefits would be very great, then the question
becomes a purely practical one.
Do we want to spend this amount of money?
What is it really going to cost?
What's the most thoughtful way of doing that?
Female Speaker: But I think what at the end of the day persuaded
everyone on the committee including the most skeptical is that this information was going
to transform biology.
It was going to free biologists from doing what was at the time extraordinarily costly
and labor intensive work, which is to sequence genes one by one by one done, with really
primitive technology, done in the hands of amateurs, which was what a graduate student
is.
And that to imagine doing this for another hundred years just became inconceivable.
Male Speaker: Most of the objections were dealt with by--
in the American way -- by a sensible compromise.
It's one of the few examples that I know of where science policy was made by a bunch of,
you know, middle aged folks in Washington and actually came up with the right answer.
It was good.
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Male Speaker: In 1988, NIH created an Office of Genome Research
and announced that James Watson, who was Mr. DNA, would be the head of the venture.
This decision amounted de facto to a commitment that NIH would take the lead on the biological
side of the genome project.
Male Speaker: If one looks at, I think, the reason why I'm
so excited by really finding out what our DNA messages are, I think it really is two
reasons.
One, it's very practical.
I think if we find out these messages, we will understand at a very deep level some
diseases now which effectively totally baffle us and sometimes almost destroy us.
The other reason is, you know, as a scientist DNA is really the message of life.
Male Speaker: Watson brought instant credibility.
He was the best known biologist, probably the best known scientist in the world.
For him to walk into a congressman's office and say, "We need to start this enterprise
because it's going to change everything and it will ultimately benefit human health,"
he got instant ability to be heard.
Male Speaker: Never met anybody quite like him.
I would say we'd attribute to him and Lawton Chiles broadening the base beyond the Department
of Energy in a substantial way.
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Male Speaker: As we get these genetic messages, there will
be ethical considerations that will come up.
And who should know about our genetic imperfections?
Should they be open knowledge?
Female Speaker: Looking at the ethical, legal, social, psychological,
economic implications of the human genome was pretty extraordinary because that was
quite, quite out of character with what the NIH had ever done.
Male Speaker: I think from the very start NIH should initiate
discussions so that as this knowledge is accumulated the public is prepared to deal with it.
Female Speaker: Before the genome project there had been several
efforts mounted by the federal government to focus on ethical issues in medicine, in
particular.
And this one was really aimed at basic science, and I thought it was about time.
Female Speaker: You know there were a lot of critics and the
critics said, "No, no, no.
You can't do this and you're just going to derail the science and it's going to be like
Asilomar, and there's going to be moratorium and all these people are going to be naysaying
and talking about problems and, you know, it's going to be just hopeless, you know,
it's going to be a morass.
And there were a lot of people who were lobbying him not to do it.
Male Speaker: From the very beginning there were some very
good senators who began to get worried about the potential for using this unpropitiously,
things we wouldn't want to do or should be prohibited.
Senator Mark Hatfield got involved.
My recollection was that there was a set aside that a portion of this money would be used
for ethics.
Female Speaker: There had been discrimination earlier.
There were issues of privacy, keeping information private from third parties.
So it shouldn't come as a surprise that working with the sciences, we knew it then and we
were all just getting started, that the first five year plan of ELSI actually focused on
some of those issues.
And lurking in the background was always the question of whether genetics and medicine
was going to be different than other parts of medicine.
Female Speaker: It was a brilliant decision because with the
genome we were going to open up a whole Pandora's Box of ethical issues.
Anyone who had thought about it for longer than 30 seconds knew that this was going to
happen and if we were not preparing the community, the larger community, for some of these issues,
they were going to come and bite us.
So in the sense that what Jim was doing was laying the groundwork for community deliberations
about profoundly important issues.
Male Speaker: To date, the ELSI program hasn't interfered
with the practice of genomic science but it has drawn major attention to a whole host
of issues raised by the practice of genomic science.
Questions, for example, of insurance, employment, and medical care.
At the same time, the ELSI program has also heightened sensitivity among commentators
and public officials to the importance of human, of using human genetic information
in ways that maintain privacy and avoid discrimination.
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Male Speaker: The International Genome Sequencing Consortium,
the 16 centers in six countries, had really learned how to do this awfully well.
And we're cranking out a thousand base pairs every second, seven days a week, 24 hours
a day.
It was roaring into the databases and you could see the trajectory and you could see
that we would get to that 90 percent point sometime around June.
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Male Speaker: We're here to celebrate the completion of
the first survey of the entire human genome.
Without a doubt, this is the most important, most wondrous map ever produced by humankind.
Male Speaker: It's as if you had knowledge and before you
didn't.
It is the information that takes a single cell and turns it into a fully formed incredibly
elaborate organism, us.
It's all in there.
In those three billion letters the instructions to do that.
Male Speaker: The Human Genome Project has already paid
enormous dividends across the whole domain of biology and medicine.
It's revealed, for example, that we have only 30 to 40,000 genes, about half of earlier
estimates and not necessarily a lot more than some lower organisms.
It's emphatically demonstrated the necessity of international collaboration in such a project
and also the necessity equally of keeping the data that comes in freely and publicly
available.
Male Speaker: I didn't think that, at the early stages,
that I would be around when they announced that the mapping and then the sequencing,
particularly the sequencing, I thought that would be too far off, but here I am.
And now we're going to get even that part done.
What I was told, mapping is one thing, sequencing is the ultimate.
When we get there, then it's going to be up to scientists to figure out how to use it.
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