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THE WHITE HOUSE
Office of the Press Secretary
For Immediate Release October 12, 1999
MILLENNIUM EVENING AT THE WHITE HOUSE
INFORMATICS MEETS GENOMICS
East Room
7:35 P.M. EDT
MRS. CLINTON: Good evening, and welcome to the White House.
Imagine for a moment that it is the year 2030. You could instantly
teleconference with your children any time, anywhere, if they will
accept the teleconference. (Laughter.) You could speak into a computer
and have your words instantly translated into any language. If you're
paralyzed in an accident, you can regain your mobility. And if you lose
your sight, you will regain it.
Well, welcome to the future, and to the 8th Millennium Evening
at the White House. Tonight we will explore the explosion of
information technology and genetic research, and how they are combining
to shape how we live, learn, and think in the next century.
I'd like to thank our sponsor, the National Endowment for the
Humanities, which every day helps create informed citizens and public
debates like this one. And I'd like to recognize its chairman, Bill
Ferris, for his work.
I also want to recognize the many members of the President's
administration who are here, including Secretary Donna Shalala;
Secretary Dick Riley; NIH Director Harold Varmus; NASA Administrator Dan
Goldin; National Science Foundation Director Rita Colwell; Director of
the NIH Human Genome Project Francis Collins; and the President's
Science Advisor Neal Lane.
I also want to thank the Library of Congress and the
Smithsonian for the exhibits in the foyer.
We're actually using some of the science that we are
celebrating tonight. People from all over the world can participate in
this event via satellite and over the Internet, thanks to John Shoemaker
and the entire team at Sun Microsystems. And you will watch video all
evening on these plasma screens, thanks to Pioneer New Technologies.
For the past two years, we have used these Millennium Evenings
to showcase the art, culture, history and science that define us as a
people and as a nation. When Professor Bernard Bailyn lectured, this
room was filled with historians. When Wynton Marsalis played here, it
was filled with musicians. And it's safe to say tonight that we have
the largest gathering of geneticists and IT experts ever assembled
together in the East Room of the White House. (Laughter.)
These lectures are part of the work of the White House
Millennium Council that the President and I started to encourage all
Americans to use this unique moment in time to honor the past and
imagine the future. And that is exactly what we will do this evening.
If we pick up any magazine or newspaper these days, these are
the kinds of headlines we're likely to find: "Twins Unlocking the
Secret of Identity;" "How the Wireless World Will Change Your Life;"
"DNA Mapping: Light at the End of the Tunnel."
We are on the brink of discoveries that are astonishing in
their complexity and implications for human life in the decades ahead.
But they didn't happen overnight. These revolutions have been driven by
our American quest for knowledge and discovery -- and the willingness of
both the public and private sectors to invest in the necessary research.
More than 200 years ago, before we had even drafted a
Constitution, our second President, John Adams, created the American
Academy of Arts and Sciences to, in their words, "cultivate every art
and science which may tend to advance the interests, honor, dignity and
happiness of a free, independent and virtuous people."
That same spirit is what drives us to go to the next
generation Internet and to find the 3 billion letters of genetic
instructions to the human body. And it must continue to drive us as we
educate and inspire Americans to understand these breakthroughs, and
continue investing in science and technology research well before we
know whether it has any commercial applications.
After all, when Vint Cerf and Robert Kahn found a way for
computers to talk to one another, they certainly didn't imagine E-Bay or
Amazon.com. (Laughter.)
But, now, even in the face of these great breakthroughs there
are many who rightly worry that our science is developing faster than
our ability to understand its implications. Because behind each of the
headlines we read we find not only great possibilities, but also
profound ethical questions that we must answer together.
As we gather more information -- whether it is commercial
transactions posted on the Internet or genetic information collected by
doctors -- who owns that information? How will we protect our privacy?
How will we make sure that knowledge about our genes is used to heal us,
not deny us health insurance or jobs? What do justice and equality mean
in a digital age?
In one of his short stories, Ray Bradbury's vision of the year
2030 has some similarities to the one I started with tonight: the
windows wash themselves, breakfast cooks itself, and a voice machine
reminds you of birthdays, anniversaries and bills to be paid, which is
especially handy as one gets older. (Laughter.) There's only one big
difference: There are no people. The population has been completely
wiped out and all that's left are machines.
Standing here with only 80 days left until the year 2000, we
have a chance to imagine and create a very different future. One in
which the revolutions in information and biology benefit, rather than
eclipse, our humanity; where our ethics keep pace with our science;
where our investments in science dramatically improve not only how long
we live, but how well we live. Because unlike science fiction, how this
story ends is in all of our hands.
So I want to thank you for coming this evening. And we have
invited two distinguished scientists to help us understand that promises
and perils of information tm prestigious universities; and both are
visionaries.
First, Dr. Vinton Cerf will give us a quick overview of the
growth and future of the Internet. Then Dr. Eric Lander will tell us
about the revolution in genetics and where it is leading us.
Dr. Lander actually started his career as a mathematician. As
a high school student, he even won a place on the U.S. team to the
International Mathematical Olympiad held in East Germany. This was at
the height of the Cold War. But when his team and the Russian math team
met at the competitions, they hit it off. They spent evenings together,
tossing water balloons down on to the streets of East Germany in
defiance. And he has been bringing people and disciplines together ever
since. (Laughter.)
He's built bridges to public policy, and by contributing his
time, has really added to the public debate as an NIH advisor. He's
also the founder of Millennium Pharmaceuticals, and now he's building
bridges between genetic discoveries and their potential to improve our
lives as the Director of the Whitehead Institute/MIT Center for Genome
Research.
Now, I'm told that Dr. Cerf, one of the fathers of the
Internet, also got his start in high school. Back then, he and his best
friend got permission to use a computer at UCLA. When the building was
locked on weekends, they would simply climb up to an open third-story
window. The machine was a size of a refrigerator and had the computing
power of today's hand-held calculators. But he was consumed by the
possibility computers held, and has been scaling wall after wall ever
since then to fulfill it. (Laughter.)
As the Advanced Research Projects Agency of the Department of
Defense, he helped to develop the procedures or protocols that computers
use to communicate with each other. And he's chairing the new Internet
Societal Task Force that is helping to make the Internet accessible to
everyone.
He's a senior Vice President at MCI WorldCom for Internet
Architecture and Technology. And I think that every parent should take
heart that people who throw water balloons and scale to third-floor
windows do have a future -- (laughter) -- that will in one way or
another be redemptive.
Therefore, I am especially honored to introduce our first
speaker, Vint Cerf. (Applause.)
DR. CERF: I didn't know you were going to dig up that story
about our high school escapades. Let me thank you, Mrs. Clinton, for
introducing me not as an "extinguished" scientist. I appreciate that.
One wonders, as time goes on.
Well, Mr. President, Mrs. Clinton, ladies and gentlemen,
Internet is the consequence of the work of many people. In 1997,
President Clinton recognized the contribution that my partner, Bob Kahn,
and I made when he awarded us both the National Medal of Technology for
the design of the architecture and communication protocols of the
Internet. Bob is here tonight, and I'd like to acknowledge his creative
leadership. Bob, would you stand up for a minute? (Applause.)
I also want to acknowledge the contributions of President
Clinton and Vice President Gore in shaping the administration policy,
and in legislation supporting research and development that's needed to
make Internet a global reality, and to continue its astonishing
evolution.
The 19th century invention of telegraph and telephone systems
dramatically changed the way in which people could interact with each
other. Dial-tone has become the symbol of voice communication around
the world.
During the 20th century, we learned that computers could
usefully talk to each other, too, using packet switching as their data
tone. You can think of packet switching as a kind of electronic postal
service in which everything that moves through the system is like an
electronic postcard that's forwarded from one computer to another until
it reaches its destination. The special computers that perform this
function are called routers, and you can think of them as forming many
different bucket brigades spanning continents and oceans, moving buckets
full of electronic postcards from one router to another, until the
postcards reach their destination.
Each bucket brigade is a network and there are hundreds of
thousands of them in the world, connected together to make up the
network of networks that we call the Internet. Everything we know about
postcards applies to these packets of the Internet -- they can get lost,
they can be delivered out of order, and they can be delayed by varying
amounts in the net. They can even be duplicated by the net, which is
not something that the U.S. Postal Service offers as a service.
(Laughter.) Of course, packet switching is about a billion times faster
than the Postal Service or bucket brigade would be.
Now, the procedures by which computers communicate with each
other and the formats of the electronic postcards that they send are
called protocols. And the most basic protocol on the Internet is called
the Internet protocol, or IP for short. Now, to make the Internet
service reliable -- which it is not using just those postcards that I
described -- you have to add other layers of protocol on top. One of
the most important of these is called TCP; it stands for transmission
control protocol -- and you're getting your dose of geek vocabulary
tonight.
This takes care of resending to recover from a lost postcard
or a lost package, or putting the package back in order if they have
been received out of order. One sometimes hears the term, "TCPIP" with
reference to the Internet. Those are the two fundamental protocols of
the network.
Now, there's another way of thinking about the power of
interconnecting computers through networks, and that's to think about
the way we use electrical power generation and distribution and
fractional horsepower motors in our daily lives. Think about how many
little modems are working for you every day to keep your ice cream from
melting, to start the car and to keep the clock turning. That's the
kind of thing that we relied on in our mechanical world.
Well, computers are like fractional horsepower motors, and
information is like electricity. Information flows through networks and
feeds computers in a fashion that's very similar to the way electricity
flows through the electrical power network and runs motors. During the
industrial revolution, we learned to put motors to work to magnify human
and animal muscle power. In our information age, we're learning to
magnify brainpower by putting computing power to work wherever we need
it to work with information for us whenever we need help.
Filled with software, computers allow us to use them as
infinitely flexible tools. Networked together, they allow us to
generate, exchange, share and manipulate information in uncountable
ways.
There are about 60 million computers on the Internet today
serving about 180 million users. Internet service is found in varying
degrees in over 200 countries and territories. Now, for comparison,
today's telephone system has 950 million telephone lines and about 3
billion users. So Internet, despite all the hype, has a long way to go.
But, by the end of the year 2000, I estimate there will be at least 300
million users on the network. And a straightforward projection of the
growth of the Internet brings it to nearly the size of today's telephone
system by 2006. Indeed, the Internet may have become the telephone
network by that time, if our ability to do Internet telephony works out
as well as some of us hope it will.
Some people are confused about the relationship between the
World Wide Web and the Internet. Internet provides the plumbing to
transport data for a variety of applications, and the World Wide Web is
one of them. But there are others, including electronic mail, Internet
telephony, Internet radio and television -- which is how we're
multicasting this event tonight over the net -- group interactive games,
collaboration tools, and a host of other applications.
Today, almost 8,000 radio stations put their audio on the
Internet. And on the net today there's also a little bit of video, and
a certain amount of telephony -- speaking of which, my colleagues and I
back in the 1970s did experiments with voice on the Internet. But we
had so little capacity in the system that we had to compress the voice
-- to shrink it down into a smaller number of bits per second. When you
talk on the telephone net today, you're using 64,000 bits per second of
capacity to deliver the sound. But on this very small little Internet
in the '70s, we had to squeeze it down to 1,800 bits per second. It
worked very well, except one little side effect -- it made everyone
sound like they were Norwegian. (Laughter.) But, apart from that, it
worked very nicely. (Laughter.)
Mobile access is also emerging, with wireless local area
networks, digital cellular telephones and mobile data radios which allow
your computer to connect to the Internet over the radio now.
Now, in addition to conventional desktop and laptop computers,
there are many other devices that are becoming Internet-enabled --
things like Internet televisions, two-way radio pagers like this one
that can do e-mail on the Internet, over the air. You can see, it has a
keyboard that is suitable for people who are three inches tall --
(laughter) -- but, apart from that, it's a minor detail, everything else
works.
Cellular phones today can surf the World Wide Web. You'll be
able to program your VCR by pulling up a pay on the web, clicking on the
programs that you want to record. And the instructions to do that will
go through the net to your VCR. This beats trying to find an
11-year-old to help you do it. (Laughter.) And, by the way, once the
VCR is on the net, it can find out what time it is and get rid of the
flashing 12:00 that's on -- (laughter.)
Indeed, many kitchen appliances, such as the refrigerator and
the washing machine may be on line in the future. And there are some
pretty funny scenarios that result from that. For example, the bathroom
scale that sends your weight to the doctor and that becomes part of the
medical record. Unfortunately, the same information may get to your
refrigerator -- (laughter) -- which will refuse to open because it knows
you're on a diet. (Laughter.) The refrigerator could scan the bar
codes on items that were put into it, so it could keep track of what was
in the refrigerator and how old it is. So you might get an e-mail from
your refrigerator warning you the milk is three weeks old -- (laughter)
-- and it's going to crawl out on its own if you don't do something
about it. It might even compose a potential shopping list for you based
on what it knows you've bought in the past.
Well, the Internet's also playing a major role in facilitating
electronic commerce. By 2003, electronic commerce of all kinds may
reach somewhere between $1.8 and $3.2 trillion in value. That's between
five and ten percent of the world's economy. So it's no surprise that
there's a lot of interest in what the Internet is doing to us in terms
of legal issues and personal issues.
Internet is going to get into everything. Here's an example
of a web-server that fits on a single chip. In fact, the chip is
smaller than the plug that connects the server into the Internet. We'll
be able to Internet-enable almost anything. And Internet is going
everywhere. Here, you see two young men putting up an Internet sight in
Kihihi, Uganda, in a village far, far away.
Well, a vast array of public issues arise with the use of the
Internet. As the Internet begins to carry all of its predecessor media
-- television, radio, print media and telephony -- questions about the
protection of intellectual property and regulation become increasingly
important. Taxation of transactions on the Internet is yet another
major topic, because Internet is global and any effort to tax its
transactions will require global agreement on suitable practices and
procedures.
The question of control of content on the net is another
frequent topic of debate highlighting the tension between freedom of
speech between adults, on the one hand, and the protection of young
people who might not need to be exposed to some of that information
while they're on the net, on the other. And similarly, citizens are
interested in protecting their privacy as they use the Internet.
Well now, let's look to a more distant future. My colleagues
at the Jet Propulsion Laboratory and I have been working on an extension
of the Internet to outer space. As we all recall, JPL has been
commissioned by NASA to launch a series of missions to Mars every 26
months. Last year, we all shared in the excitement of seeing dramatic
photographs relayed from Mars by the rover of the Pathfinder mission.
A year or so ago, several of us interested in the use of
Internet in space began to work on the use of Internet to support future
communication needs of robotic and manned missions in the exploration of
space. This is really a different environment. It takes 80 minutes for
a signal to go from Earth to Mars and back again, for example, in the
worst case.
We're designing an interplanetary backbone which we hope to be
functioning between the Earth and Mars as early as 2008. NASA's
Administrator, Dan Goldin, often speaks of Internet-enabled Mars, as a
way of capturing this notion. And by 2040, we hope a stable
interplanetary backbone can be established between the planets.
Meanwhile, back on Earth, the link between the information of
the Internet and the human genome is most vividly illustrated by genetic
research which uses information technology to determine and analyze the
3 billion pieces of information that make up the complete DNA sequence
of a human being. And speaking of biotechnology, I believe it will be
routine in the 21st century to interconnect our nervous system with
electronic equipment.
The best example of this, using today's technology, is the
cochlear implant. The implant bypasses the mechanics of the inner ear
to directly interface to the auditory nerve. A speech processor, a
computer about the size of a pager, is connected to a sound source, such
as a microphone, and delivers stimuli to the implant which directly
signals the auditory nerve. This is a direct computer nervous system
interconnection.
My wife, Sigrid, who is here with us in the audience , lost
her hearing at the age of 3, and she was profoundly deaf for 50 years.
Three years ago, she learned enough about cochlear implants through the
Internet to determine she might be a candidate for an implant. After a
positive evaluation, she had the implant done as an out-patient
operation at Johns Hopkins University, and after the surgery had healed,
she returned to be activated. (Laughter.)
About 20 minutes after this was done, she called me on the
telephone -- and for the first time we had a telephone conversation --
for the first time in our 30 years of marriage. Now, we have a big
problem -- we have a 56-year-old teenager in the house. (Laughter.)
She uses the telephone regularly, she listens to radio and
television. She carries a variety of patch cables that allow her to
connect her computer speech processor to any source of sound. And on
airplane trips she just plugs into the arm rest, she doesn't have to
wait for the headphones. (Laughter.)
Sigrid's surgeon, John Neparco (phonetic), is here tonight,
too. John, would you stand up for a moment to be recognized.
(Applause.)
Sigrid, can you stand up and show us what that speech
processor actually looks like? We can get the camera on this so that we
should be able to see it on the screen in a minute here. There we go.
Hold it still. And, Sigrid, could you tell us what it was like to
suddenly regain your hearing after 50 years of silence?
MRS. CERF: It's been a party every day. It's been such fun
-- I'm going out and hearing the birds, rushing to the phone to get
telemarketing calls -- (laughter) --
DR. CERF: I like the one where she listened to the AT&T spiel
all the way to the end with a big smile and then said, "No, Vint the
Cerf works for MCI WorldCom, we don't think we'll switch." (Laughter.)
MRS. CERF: A peak experience is being able to hear and
recognize the voices of President and Mrs. Clinton on the radio.
DR. CERF: That's neat. Thank you, Sigrid. (Applause.)
Well, to sum up, Internet is becoming and will be central to
human communication in the decades ahead. It enables interaction among
cultures and societies on an unprecedented scale and among individuals
and groups with a facility unknown in the past. In simple terms, there
is an Internet in your future; resistance is futile. Thank you very
much. (Laughter and applause.)
MRS. CLINTON: Thank you very much, Vint, and thank you,
Sigrid, for being part of this evening and for that demonstration.
Vint told us about how one information system is changing our
lives and foreshadowed what will happen when it becomes even more
possible to be combined with biotechnology. Now, to explain the
information system known as the genome is Dr. Eric Lander. (Applause.)
DR. LANDER: Thank you, Mrs. Clinton. I want to thank both
the President and the First Lady for the invitation to speak here
tonight. We are in the midst of one of the most remarkable revolutions
in the history of mankind. The revolution was sparked by scientific
curiosity about life, but its consequences would be so far-reaching as
to touch every aspect of society. It is an information revolution,
unlocking databases of human heredity and evolutionary history. It is a
medical revolution, holding the prospect that our children's children
will never die of cancer. And it is an intellectual revolution that may
reshape, for better of for worse, our notions of human potential.
I refer, of course, to the revolution in genetics and
genomics. Now, genetics is the study of biological diversity within a
species. This is my favorite slide to illustrate the spectacular degree
of diversity in our own species. It's a famous old picture of Wilt
Chamberlain and Willie Shoemaker, and it shows the wonderful range of
differences in such traits as height, weight, skin color.
But it's also emblematic for me of the many differences you
don't see -- in susceptibility to heart disease, cancer, asthma and
diabetes. All these differences are underlain by the action of multiple
genes working together with environment. Now, to geneticists, such
differences provide clues to the common biological mechanisms at work in
all of us.
Genetics is quintessentially a child of the 20th century, born
in the opening moments of this century. Of course, genetics does go
back to Gregor Mendel's experiments with peas in 1865, but the work was
largely ignored for 35 years. The real explosion began with three
papers that rediscovered Mendel's work, the first of which appeared, as
if keeping an appointment with history, in January 1900.
Now, at the start of the century, heredity was known to obey
certain laws of transmission, but the hereditary information itself was
a complete mystery. By quarter-century, heredity had a physical basis
and a cellular structure -- the chromosomes. Chromosomes carried genes,
whatever they were.
By mid-century, heredity had a molecular basis, in the form of
deoxyribonucleic acid, DNA. It was clear that DNA somehow encoded the
instructions to make every protein in our body: the hemoglobin in our
blood, the keratin in our hair and the olfactory receptors with which we
smell the fragrance of a spring day.
But, at the same time, it wasn't possible to read even a
single gene. Now, three-quarters of the way through the century the
recombinant DNA revolution burst on the scene, making it possible not
only to read DNA sequences, but to isolate, modify and propagate genes,
giving rise to the entire biotechnology industry.
And, now, as the century draws to a close, we're turning from
the study of individual genes, genetics, to global views of all genes
simultaneously -- genomics. We stand on the verge of having the
complete sequence of the human genome, the complete 3 billion letters of
genetic instructions for the human being, comprising roughly 100,000
genes.
Biologists will barely pause to mark this milestone, eager to
race on to understand the information in the genome. But we should
reflect a moment on the extraordinary journey, covering nearly 10 orders
of magnitude, 10 powers of 10, in 10 decades.
Genetics has been largely the story of undirected,
curiosity-driven research; arcane experiments about fruit fly families
and bacterial defense mechanisms that paid huge dividends. The human
genome project itself is the handiwork of thousands of scientists around
the world in academia and in industry. But the American people and
their government deserve special credit for having had the vision to
launch this project more than 10 years ago, to invest in basic science
when its benefits were still unclear. And I particularly want to
acknowledge the leadership of Dr. Francis Collins, the Director of the
Human Genome Project who is, of course, here tonight. (Applause.)
Now, what will it mean to know the complete sequence of a
genome? The right analogy, I believe, is with the discovery of
chemistry's period table of the elements in the late 1800s. The
recognition that all of matter could be described in terms of about 100
building blocks set the stage for chemistry in the 20th century. It
rendered chemistry finite and predictable. It gave rise, on the one
hand, to the chemical industry, among the other -- the theory of quantum
mechanics.
Oh, genomics is now providing biology's periodic table. Not
100 elements, but 100,000 genes. Not rows and columns, but a more
complex tree, showing the similarities amongst genes. The effect will
be much the same -- to render biology finite. Scientists will know that
every phenomenon must be explainable in terms of this measly list of
100,000 components. And just as the chemistry textbooks have the
periodic table in the front cover of the textbook, so, too, will biology
textbooks of the sequence of a human genome. Conveniently, one human
genome fits snugly on a single CD rom.
How is genomics being used in medicine? First of all, to find
genes for disease susceptibility. This can be done by correlating the
inheritance patterns of a disease in families with the inheritance
pattern of chromosomal regions, to home in on the location of a disease
gene and discern its nature.
For cystic fibrosis, for example, the DNA sequence looked like
this -- lots and lots of letters. And I call your attention to this
tiny spot boxed in red, which I've blown up in the next slide there.
That's right. The deletion of those three letters, C,T,T, encoding a
single amino acid, phenylalanine, is the cause of cystic fibrosis in a
vast majority of cases. About five people in this room carry that
mutation. They're not, themselves, at risk, but they could have
children with CF if they marry another carrier. And if on the way out
of this room, everyone were to spit in a test tube, we would be able to
analyze the DNA and call you back tomorrow and let you know which of you
were carriers.
But there's more. If we toss the sequence of a cystic
fibrosis gene into the computer and ask if the computer's ever seen
anything like it before, the computer responds, yes, there are dozens of
genes that are similar. They all reside at the cell's surface and they
transport molecules. And that's before doing even a single experiment.
We have a very good guess that the cystic fibrosis gene is a
transporter, which indeed turns out to be right.
This shows clearly the power of transforming biology into an
information-based science. Discoveries can be leveraged a hundred times
over. The same approach has been used to identify genes from many
diseases, including early onset breast cancer and colon cancer.
And here's a provocative example. There's a gene on
chromosome 19 called apolipoprotein-E. It has three common alternative
spellings in the population, called E-2, E-3 and E-4. Turns out, if you
happen to have a double dose -- two copies -- of the E-4 spelling, you
have an especially high risk of Alzheimer's disease later in life --
perhaps a 50 percent chance. About six people in this room have a
double dose of E-4. And if, on the way out, you spit in the test tube,
we can ring you back tomorrow and let you know if you're one of those
people with high risk for Alzheimer's disease.
Do you want to know? I certainly don't. There's no therapy
today for it. But at least the knowledge that apo-E is involved in the
disease has propelled pharmaceutical companies to search for drugs that
block its action.
Now, one consequence of the periodic table is that we can
build detectors to follow how each gene is turned on and off under
different conditions in the cell. By taking such global views, we can
begin to infer the wiring diagram, the circuits and software of the
cell, so to speak.
Everywhere, the focus is on mechanisms. We're beginning to
understand diseases as mechanical processes, uncovering the cellular
clockwork driving the mayhem of disease. Even aging is beginning to be
understood as a programmed, molecular process -- raising the prospect
that someday we may be able to slow its course.
Nowhere will the impact be greater than on cancer. Cancer
treatment today consists largely of giving poisons to which rapidly
dividing tumor cells are slightly more sensitive to normal cells. It's
a blunt weapon, indeed. Now, for the first time, the features that
distinguish cancer cells from normal cells are becoming clear. They
suggest dozens of ways to specifically kill cancers. They go by arcane
names like angiogenesis inhibitors and telomere blockers and
antibody-mediated destruction. But these rational strategies will
together provide us with multi-drug cocktails from which tumors can't
escape. It will take patience and steady investment, but it's already
clear that by the end of the next century cancer will no longer be the
dread scourge that it is today.
And quite apart from its medical significance, the texture
variation in the human genome holds great fascination. Any two human
beings on this Earth are 99.9 percent identical at the DNA level -- only
one difference in a thousand letters. So as you look to your neighbor
to the left and to the right, you should appreciate how nearly identical
you are. (Laughter.)
On the other hand, one difference in a thousand letters in a
genome of 3 billion letters still translates to 3 million differences
between any two individuals. So if you look to your left and your right
again, you can also revel in your absolute uniqueness. (Laughter.)
DNA also teaches us about human history. Rare spelling
differences in DNA can be used to trace human migrations. For example,
scientists can recognize the descendants of chromosomes that ancient
Phoenician traders left behind when they visited Italian seaports. DNA
also tells us that we are a very young and closely related species. DNA
variation reveals a human family tree in which all 6 billion humans on
this Earth -- and I understand that last night at midnight, we
officially passed 6 billion with a little baby born in Sarajevo -- all 6
billion humans on this Earth trace back to a small group of about 50,000
humans that lived in Africa a mere 7,000 generations ago, about 150,000
years ago.
The common genetic variance in the human population today
largely traces back to that initial family population in Africa. And
although the general public may imagine that there are sharp differences
among racial and ethnic groups, most genetic variations are distributed
across all groups.
Now, there is one crucial way in which my periodic table
analogy breaks down. The chemical periodic table pertains to atoms and
molecules. The biological periodic table speaks of people. The social
consequences of genomics will be far-reaching, and I hope we'll have an
opportunity to discuss them this evening.
Let me touch on one very briefly. In the short-term, the most
pressing challenges will be to deal with the flood of genetic
information. The key issue, I think, is privacy. We must protect the
privacy of genetic information, so every citizen can get the information
essential to their health without fear of repercussions. Should
insurance companies have a right to know genetic information before
providing health insurance? What about employers? The government?
Even overzealous journalists?
There's been some progress in passing laws to prevent genetic
discrimination in group health insurance, but there's currently no
protection for individual health insurance, employment and general
privacy. There's much work to be done.
Now, in the long-term, the most unsettling question will be
whether we should ever re-engineer the human genome. Well-meaning
enthusiasts are sure to begin proposing ways to improve the human genome
-- to prevent cancer, slow aging, enhance memory. Concerning this last
possibility, I'm sure you've all read that Princeton University, my alma
mater, has expanded its educational mission. Biologists there are
producing smarter mice by adding genes for certain neurotransmitter
receptors.
But the notion that we can improve humans with a quick gene
fix is, of course, naive. Human physiology is a delicate balance, and
simplistic efforts are likely to do more harm than good. Just imagine
the prospect of a product recall for a gene introduced into the human
population that we later realized wasn't such a good idea. (Laughter.)
Well, we can delay these prospects for a while by emphasizing
our profound ignorance, but that's only a temporary solution. There
will come a time when we can do such things safely, and we must discuss
what we should do. Should we ever make a human being in someone's
image, according to someone's plan? Would crossing this threshold turn
human beings into products of manufacture? If we cross this threshold,
will we ever return?
And then, finally, the most important issue will be the subtle
ways in which genetic knowledge influences our own views of human
potential. There is a risk that we may fall into a naive biological
determinism, hewing to individuals as specified by their genes, limited
by their genes.
This would be a colossal mistake. History is littered with
supposedly scientific pronouncements about the limits of women, of
African Americans, of Southern Europeans, of Asians, of Jews. Science
has done a singularly poor job when it has sought to define limits on
the human spirit, and on human potential.
Now, we need more nuanced ways to understand the role of genes
and the range of human diversity. I'm particularly fond of this poster,
from an exhibit at the Musee du Langue in Paris. It reads: "Tout
parent, tout different." It can be translated two ways: all the same,
all different; or all related, all different.
And this is, of course, a central theme -- perhaps the central
theme in the American conversation. When Thomas Jefferson wrote the
Declaration of Independence -- "We hold these truths to be self-evident
that all men are created equal," -- the words, in fact, had a rather
narrow meaning. But they have grown with the country, reinterpreted
through the centuries by Elizabeth Katie Stanton at Seneca Falls, by
Abraham Lincoln at Gettysburg, by Martin Luther King on the steps of the
Lincoln Memorial. That fundamental credo that people must be judged for
how they act, not for accidents at birth, will have even greater
importance as we develop thousands of new ways in which we could, in
principle, subdivide a people.
What a remarkable time. Genomics is opening breathtaking
horizons in scientific understanding and medical progress. At the same
time, it is presenting us with complex social choices. I know of no
scientific field in which it is more exciting or more important for us
all to imagine the future. Thank you very much. (Applause.)
THE PRESIDENT: We have had many wonderful nights here, but I
don't think I've ever been more stimulated by two talks in my life.
Thank you, Dr. Cerf. Thank you Dr. Lander.
I would like to also say a word of appreciation to Hillary. I
think that as our time here draws toward its close, it's clear that she
has been, I believe, the most active and innovative First Lady since
Eleanor Roosevelt, for, perhaps these Millennium Evenings will last
longer in the imagination of America than virtually anything any of us
have done, and I thank her for that. (Applause.)
Also, being term-limited does have its compensations.
Normally, at this time of year I'd be doing something else tonight.
(Laughter.) Yesterday, I called the Vice President to rub it in and
describe what I would be doing tonight. (Laughter.) And I was having a
very good time turning the screw about how fascinating this was going to
be. Finally he said, that's okay, you need to be there more than I do.
(Laughter.) The jokes about my technological and scientific limitations
are legion around the White House. (Laughter.)
So I have been thinking of all these questions -- do I really
want a mouse smart enough to go to Princeton? (Laughter.) Won't it be
sad to have an Internet connection with Mars if there are no Martians to
write to or e-mail us? (Laughter.) I am glad to know that the total
connection of the Internet to the nervous system of human beings is a
little ways out there in the future. I had been under the impression
that that had already occurred among all children under 15 in America.
(Laughter.)
This is an amazing set of topics. Let me say just one other
thing. I really loved seeing, on a slightly sad note, I loved seeing
that wonderful, famous picture of Wilt Chamberlain and Willie Shoemaker.
Some of you may know the great Wilt Chamberlain passed away today, one
of the greatest athletes of the 20th century. So I hope you will have
him and his family and friends in your thoughts and prayers tonight.
This is a fitting thing for us to do in the White House,
because innovations in communication and technology are a very important
part of the history of this old place. In 1858, the first transatlantic
telegraph transmission was received here in a message that Queen
Victoria sent to President Buchanan. Later, the first telephone in
Washington, D.C., was located in a room upstairs and we now have a
replica of that telephone in the same room upstairs. The first mobile
phone call to the moon was made here by President Nixon, 30 years ago.
Even these Millennium Evenings have made their own history. This is
where we held the first ever cybercast at the White House.
So I want to thank the speakers for building on all of this
and telling us what we can look forward to in the future; and for
reminding us that as we unlock age-old mysteries and make what we can
think more possible to do, there are ways to do it that bring us
together as a society.
So I would like to begin the questioning, if I might, with a
question to Dr. Lander, because it bears on a great deal of the work
we've done.
You talked about how we were 99.9 percent the same, but how if
you looked at how many permutations there were in the one-tenth of a
percent left we could still be very different. I think it's very
interesting -- and I talk about this all the time -- that as we're on
the age of this new millennium and we have these evenings and we imagine
this future that you have sketched out to us, this is what we all like
to think about, how exciting, how wonderful, how unbelievable it can be.
The biggest threat to that future is how many of us on this
globe are still in the grip of the most primitive of human limitations
-- the fear of the other, people who are different from us. And we see
all over the world -- from Bosnia and Kosovo to the Middle East to
Northern Ireland to the tribal wars in Africa, how easily the focus on
our differences -- that one-tenth of one percent -- as what matters can
lead first to fear, and then to hatred, and then, ultimately, to
dehumanizing people who are different.
And it's very interesting -- as someone who grew up in the
segregated South and lived with the whole terrible and, yet, beautiful
struggle of the civil rights years, to think that there were in my
hometown people who were dehumanizing other people because of the
one-tenth of one percent difference between them is quite an awesome
thing to contemplate.
So I would like to ask you, if you could say in ways that
would make sense to us, explain to us a little bit what is it that makes
us the same and what is it that makes us different? And how could we
communicate this scientific knowledge to people in a way that would
diminish the force of racism and other bigotry in the world in which we
live?
DR. CERF: You're not asking for a whole lot there.
(Laughter.) A minor little detail, right. (Laughter.)
DR. LANDER: No, but what a wonderful question and what an
important thing. I even want to point out that when you speak about the
one-tenth of a percent difference between two groups who might be
warring with each other, there isn't a one-tenth of a percent difference
between those groups.
DR. CERF: It's even less than that, isn't it?
DR. LANDER: In fact, the variation in the human population is
really that ancient variation we had back a long time ago. Most genes
come in about two or three flavors, two or three spelling differences.
And those flavors of the genes weave themselves through the human
population like a tapestry. You and I have one-tenth of a percent
difference. But two ethnic groups don't have one-tenth of a percent
difference. Most of the variation is not between groups, it's within
the individuals within the group.
In fact, since we all left Africa 7,000 generations ago, there
just hasn't been a lot of time to build up large amounts of genetic
variation. We do see differences. In fact, we're cued into seeing
differences between people. That's very misleading about what is really
going on at the genetic level. You may think two humans look very
different from each other, but the truth is they're much more
genetically similar than two chimpanzees are. Chimps have much more
genetic difference within their species than we do, because we are such
a new, young, small species.
And so, in fact, there are not significant genetic differences
between warring parties in most parts of the world. A geneticist going
in could not find those differences. Indeed, it may help -- I don't
want to be naive about that -- but it may help for folks to know that
the differences that are out there are woven in every population. Maybe
they're at slightly different frequencies, but they're throughout the
whole population.
I don't imagine that will solve prejudice and that will solve
racism, but, in fact, I don't see a scientific basis for drawing lines
between people there.
DR. CERF: So you're saying that racism isn't a spelling
error?
DR. LANDER: No, no, no.
DR. CERF: It's not anything as simple-minded as that at all.
DR. LANDER: Sure, there are genes that control differences in
appearance and some of them have been selected over the years. But, in
fact, they don't represent the majority of variation in the genome. And
I, as a geneticist, and I think most of my colleagues appreciate that
those are not the places to draw lines.
DR. CERF: So, therefore, that's not an excuse. That's
wonderful.
DR. LANDER: No, I think the interesting variations that are
the variations of things like the number of color receptor genes you
have. Some folks have two red receptors or three red receptors, and do
they see the world differently? There's a lot of wonderful texture of
variation out there, but it's not a variation that ought to be dividing
us.
MS. LOVELL: I'm going to bring this back to the Internet with
Omar Wesso (phonetic). You started, as a youth, playing around with
computers and now you're an Internet analyst and entrepreneur.
Q Thank you. I wanted to ask, basically, we have seen
numerous wonderful and unanticipated uses of information technology
developed. You mentioned electronic commerce. I wonder, how can we
encourage more young people and adults to move from being consumers of
these future innovations to being creators?
DR. CERF: Actually, based on what the President observed, I'm
not sure we have to encourage too much. I think that most of the
innovation that's happening in my field is happening among young people
between the ages of nine and 20. One of the sons of an FCC Commissioner
is already teaching his third grade class how to make web pages. And I
think -- don't look behind you, there is a 13-year-old gaining on you.
I honestly believe if you're looking to understand where the
future of the net is going and all of this technologies, don't ask an
old fart like me, go talk to the kids that are teenagers or in junior
high school because they are the ones that are going to decide what
things they want to buy, what services they want, what new products
they're going to build, and a lot of them will do it themselves.
So in a funny way, I'm not sure that we have to work very hard
to achieve the objectives you're suggesting. These kids have adopted
the net, it's theirs. The one message I get from them is, this is our
network, don't screw it up. (Laughter.)
MS. LOVELL: Well, Mrs. Clinton, let's go to the Internet.
MRS. CLINTON: All right. This is one of the real joys of
being able to have these evenings is to have questions that come in.
And so, do we have a question that we can put on my screen? Do I have
to -- Ellen, if it's on that screen, why don't you read it?
MS. LOVELL: Yes, that was supposed to happen. Well, here we
go.
DR. CERF: By the magic of technology. (Laughter.) That's
it. How many engineers does it take to --
MS. LOVELL: Somebody just said one of the postcards got lost.
(Laughter.)
This is from Seattle, Washington, and it's to Vint Cerf, and
it says: At our current pace, do you think we'll gradually lose our
interpersonal skills and become more and more isolated from each other?
Are we losing our tribal or village human experience, in exchange for a
purely impersonal, technical one? Thank you, Uncle Dave. (Laughter.)
DR. CERF: You know, this reminds me of the glass window
syndrome. Whenever we get into an automobile and we start driving,
we're isolated from the world by a sheet of glass. And boy, what does
that do to change our behavior.
Well, I don't agree with the proposition that the Internet
isolates, or dehumanizes, or separates us. I don't think it does any
such thing. I think that it connects us in ways that we never could be
connected before.
I see preservation of culture. I see the sharing of
experience. I see the sharing and preservation of history in that
medium. I discover people and places that I never would have discovered
before, were it not for the spread of the net. And I think, frankly,
the travel industry is going to benefit more than any other segment of
the population, because people discover other people with common
interests, that they otherwise could not have encountered. And then
they want to go and meet them.
And so my guess is that the net is actually going to create a
far greater, global conversation than we ever had before. And it will
create virtual villages of people with shared interests that couldn't
exist except in the world of cyberspace.
MS. LOVELL: Yumedas Chikas (phonetic) is a student from
Wheaton High School who participated in the National Institute of Health
pilot program, teaching genetic literacy so young people would be able
to make informed choices in the future.
Q Good evening. Both the Internet and genomics gather
billions of pieces of data. Who owns information gathered about me? Is
that information secure, in the database or on the Internet? Do I have
a right to keep my information, including genetic information, private?
MS. LOVELL: That's really for both of you.
DR. CERF: I think you do. And it seems to me that it's no
different than any other personal information that might be about your
income, or your financial situation, or other personal activities. Of
course, the problem is not the technology. And don't let anybody tell
you that, well, the solution to this problem is cryptography. It's
actually a powerful tool, and it's a good, useful tool to have.
But what is really at issue here is how we decide as a society
to treat that information. How do companies and other organizations who
obtain it in the normal course of work -- if it's medical transactions,
medical treatment and things like that -- how do we decide, as a
society, to treat that information?
And in my view, that information is just as private as
anything else that we would consider personal information. But in order
to protect it, we have to decide that's what we're going to do.
DR. LANDER: Now, Vint, you say he has a right to that. And
that's because you recognize his right, but I don't know that at law we
do recognize that right yet. I think, in fact, we have to go quite a
ways to protect the right that we feel you should have to control your
own genetic information.
Do you have a right, right now, to stop someone who takes your
blood for a particular test, medical test, from doing 10 other tests to
it? It's not at all clear in the law you do right now. Do you have the
right to stop me from taking a cocktail napkin that you might have wiped
your face with and do a DNA test on it? It's not clear you do right
now.
I think, in fact, if we're going to make sure that you have an
opportunity to seek genetic information for your own benefit, we're
going to have to protect it. And I think we're going to have to protect
it with a lot -- to recognize that right, to let you sue for that right
and to make sure that everyone respects that right.
And I know there's a lot of effort to do that right now. And
I think it's one of the most important remaining works to make sure that
the Human Genome Project itself delivers a society that citizens can
really use. And I really, for my part, endorse the efforts to pass such
legislation. I really call on everyone to get to it.
DR. CERF: Could I ask for you -- we've got two very
prominent --
DR. LANDER: Right. You guys have more to say about this than
-- (laughter.)
THE PRESIDENT: Let me just say this. We've been working on
this, and it's very important to me because I'm a fanatic about this
issue. I want unlimited scientific discovery, and I want unlimited
applications. But I think we don't want people to lose their sense of
self and the fragility of their personhood here in some sort of assault.
So we've been working on this.
What you said sounds great, but it's not as easy to do as it
sounds. So I think it might be helpful, if I could just ask Secretary
Shalala, who is in charge of one piece of this, which is our efforts to
protect the privacy of medical records, just to talk a little bit in
practical terms about what we're doing to respond to this young man's
question.
Donna, would you -- there's a mike.
SECRETARY SHALALA: I think the most important thing I should
say to this young man -- actually, the answer to his question is, it
depends on what state he lives in whether his medical records --
DR. CERF: Euphoria.
SECRETARY SHALALA: But the one thing I can tell you is that
there are more federal protections on your Blockbuster card than there
are on your health information. And that is, no one can go to your
local Blockbuster and ask what movies you rented because they're
actually is a federal law that protects your Blockbuster record and the
videos that you rent.
What we're trying to do is to set out a set of principles --
and we'll probably end up putting in place some regulations if Congress
doesn't act. The President has been urging Congress to act. But the
fundamental principle is that health care information ought to be used
for health care purposes. And anyone that doesn't ought to be held
accountable; that you ought to have the right to get access to your
health records to make corrections, if necessary, but that there are
larger public purposes.
The President cares deeply about research, for example, and
that all of us have to agree as a society that our health records can be
used for research purposes but, at the same time, protect our privacy.
So we have to have a set of principles and the fundamental one
is that health care information for health care purposes -- they can't
be used to deny you a job or access to college or to deny you insurance.
THE PRESIDENT: But let's deal with two hard questions here,
real quick -- I think this is important. Question number one, pretty
soon if the genome project is brought to fruition, according to what Dr.
Varmus has told me when I spent a day out there, it will become normal
in the not too distant future for young mothers to go home with their
babies from the hospital with a map of their genetic future. You may
not want to know about Alzheimer's, but you could know about things that
even if you can't cure you could delay, defer or minimize. So you get
that.
Now, the mother and the father are employed by someone and
they provide family health insurance. Since private insurance is based
on a reasonable approximation of risk -- I don't agree with the way we
finance health care in this country, you all know that. But that's a
fight I didn't win here in the last seven years -- if it's based on an
assessment of risk, what should the insurance company have a right to
know? And if the insurance company doesn't have a right to know,
haven't you undermined the whole basis of privately-funded insurance
based on risk -- question one. Question two for you.
DR. CERF: We don't get to answer that one.
THE PRESIDENT: Yes, I want you to answer that, but I want you
guys to talk. Question two: This is the problem we face in a much more
grave sense in dealing with the prospect of cyberterrorism or something.
It's one thing for us to write laws that protect privacy of records.
But you just got through -- in answering Omar's question, you were
talking about how, well, but all these kids are always figuring out --
well, among the things they're figuring out is how to break into various
systems all the time. So even if we had perfect laws, how are we going
to protect privacy when we're dealing with all of these creative
geniuses out there working through the net? Respond to those two
questions.
DR. CERF: Now, let's you and him fight. Okay.
DR. LANDER: No, no, it goes right to the heart of the problem
here. At some level, is insurance about matching rates to risks, or is
it about sharing risks that none of us chose? And what happens is that
at the beginning where we don't know that much about our future, there's
not so much tension between those two. As we learn more and more about
specific risks -- that you might be at risk for cancer and someone else
might be at risk for diabetes, we could make exclusions or put in
special rates for your cancer risk there -- we can, in fact, tear apart
the basis for pooling the risk and sharing the risk.
But I think the important point to recognize there is if one
insurance company won't wish to forego that information when its
competitors had that information -- well, it wouldn't do very well
economically. But if all couldn't use that information, they wouldn't
have any disadvantages relative to each other.
There is still the question -- what I guess economists call
"adverse selection," people who know they need more insurance for some
particular risk going out and buying more. But for some basal level of
insurance, I think, in fact, we ought to have a way where some insurance
package -- and we probably don't disagree much on this -- has to be
available to people quite independent of those risks.
And maybe then, if you want to get an extra million dollar
policy on some cancer thing, you might have to consent to it, because
that's a different kind of economic bargain. But at some basal level,
no, we've got to decide that we mean this is a social way to share risk;
to say with respect to all the things that could happen to you, there
but for the grace of God go I, and decide that that's the basis for our
system. And I think we can by making sure that we uniformly don't use
that across all companies, make an economically viable system that
doesn't. But there's obviously a lot of work to be done, and I don't
mean to over-simplify any of that.
You get the other half.
DR. CERF: I get the other half. Thank you. Okay, I want to
come back to this question of privacy, though, but we'll do that
afterwards. The question about how we protect ourselves against all
those really smart kids out there is that some of them are helping us do
that, in fact, already. (Laughter.) But I don't want to understate the
challenge that this poses.
You'll recall, Mr. President, that your Information Technology
Advisory Committee not too long ago recommended that we increase the
level of research and fundamental software principles that will allow us
to build much more robust systems than we can today. There's a lot of
very basic research that needs to be done to make software more reliable
and more resilient. And that's not something that you just do on a
weekend's work. It means serious and sustained effort in the computer
science departments here and elsewhere to understand how to cope with
the billions of pieces of software that are interacting in networks in
these little slices of computing that are everywhere imbedded in the
woodwork.
So the answer is, there's no easy solution to that. But it's
not going to require a breakthrough of huge magnitude; it just takes
some very sustained work. And we have to make sure that that work gets
supported.
MS. LOVELL: You know, I think Carol Greider (phonetic)
actually had the perfect follow-up question to the President's question.
Carol is a geneticist with John Hopkins University, with an expertise in
-- as you will see -- a very special interest in genetic information.
Q To pick up the question that you raised yourself, a question
of Dr. Lander, and that is that, given that a lot of different diseases
have both a genetic component and an environmental component, and the
genetic component may be made up of a number of different genes, what
might be the advantage to parents knowing the complete genotype of their
children as they go home, knowing that there are environmental as well
as genetic influences?
DR. LANDER: Well, goodness, today, sending parents home with
complete genome type information, even if we could do it, would
overwhelm them -- would overwhelm them because they couldn't possibly
digest that information; and because nobody could help them digest that
information. Genes interact in a complex way in an interactive
environment.
We're going to have to think very carefully about how to
supply information that represents what we really know and what people
can act on. There are going to be places where we can make a big
difference. We know there are genetic predispositions to juvenile
diabetes. We don't know quite how to prevent that, but there are
strategies that people might use if you knew a child was going to be at
high risk for juvenile diabetes. And that's something that you're
probably have to do before the age of five, to intervene then. So a
parent is going to have to know that information and do something about
it and make a choice. And they may be strategies that you wouldn't
apply to everyone in the general population because there is risk
involved.
So we're going to have to match the information to being able
to act on that information and to the responsibilities of parents do it.
I think the gaping hole right now is education. And I don't just mean
that in the form of the American people don't know enough about genetics
and they should pick up genetics text books. I mean that we don't know
how to explain it. But a tremendous amount of research has to go on on
how to communicate this in a way that people can hear and understand.
It's easy to talk around statistics and nucleotides and things like
that, but I don't think it connects for people.
And so I think we have a huge amount of work to do, every bit
as important as the scientific work, to connect up with the general
public and expectant mothers and fathers.
DR. CERF: Can I come back to one very interesting thing about
this privacy question? Often, when we're trying to do scientific
research, it's really valuable to have a pool of information about the
health conditions of the entire population that we can deal with
epidemiology and all these other things, we can see how certain
treatments are doing in a large population.
Now, normally, the way we deal with this is we decouple the
personal information, the identifying information, from the medical
information. And that sort of works for almost all of the cases I can
think of except genetic information, and here's why. The complete
genetic sequence of a person is the most definitive fingerprint I can
think of. It defines the person. So if complete genetic information is
available to you and that's associated with any of the other medical
information, somehow or other that's the ultimate fingerprint, you can't
decouple the personal information because it is the personal
information. So what are we going to do about that?
DR. LANDER: We're going to sign you up for the committees
thinking about how, in fact, you parcel out that information in ways
that we can still do research and still protect the privacy.
I think both are important. We default on being able to do
research because of an undue fear that information will leak out, I
think we will disadvantage people. If, on the other hand, we let that
information leak out, we will also do a great disservice. And we're
going to have to chart a course down the middle and it's going to take a
combination of information scientists and genomicists to think about how
to do that job, so we'll find out.
DR. CERF: That's great. There's at least one PhD
dissertation hiding in there.
MS. LOVELL: And to get to some more of that information, I
wanted to acknowledge Stephen J. Gould, the biologist who, as President
of the Association for the Advancement of Science, helps the public
fathom issues in science. Dr. Gould.
Q I wanted to ask you two quick questions -- broad in
implication. First of all, what is the human genome, given all that
variation? Admittedly, not much between any two, but integrated over
the genome, what's it going to look like when it's finished? Is every
position going to be ACGFT, ACGFT?
Secondly, given the reductionistic traditions of the way we
think in Western science, how are we going to get people to understand
and recognize that that little CD of yours is not a human being, and
that humanity and humanness is very different from the blueprint that's
only a grand average of all of us -- never going to explain what makes a
Yankee versus a Red Sox, which is arguably the most important question
in America today. (Laughter.)
DR. CERF: Certainly will be in the days ahead.
DR. LANDER: Oh, goodness. Well, the first one -- what is the
human genome -- sort of a first-order approximation, it will be a list
of As, Ts, Cs and Gs, just like you've got lists of ones and zeroes.
And it will be an arbitrary sequence from one person -- actually, a
harlequin of sequences from different people. And we won't fuss much
over the one letter in a thousand.
As time goes on in the years ahead, each of those letters will
get annotated to say, this is a spot of variation. This is a spot where
you've got a gene that frequently comes in a couple of different forms.
And that will get layered on and on. Every single nucleotide of the
human genome does vary in somebody in the population, but the ones we're
interested in are the common ones, where we might stand a chance of
understanding medical significance.
With regard to the other question you ask -- how do we make
sure that people don't get the view that the CD is the person -- I think
that scientists have a real obligation in their choice of metaphors. I
think metaphors are tremendously powerful things. We can call the human
genome "the blueprint," the "Holy Grail," all sorts of things -- it's a
parts list. It's a parts list. If I gave you the parts list for the
Boeing 777, it's got 100,000 parts on it, but I don't think I could
screw it together on the basis of that and I certainly wouldn't
understand why it flew because of that, and I wouldn't understand all
sorts of things because of that.
We've got to understand that the Human Genome Project is
tremendously exciting, but it is a piece of infrastructure. It is
infrastructure building like we build roads in this country, to help
commerce. It is an infrastructure-building project like the Internet,
which is not the information, but a backbone, and we've got to make
people understand that despite all the wonderful, highfalutin talk about
genomics, it is the beginning, not the end. And I don't expect to be
able to read out human nature in that code, and I certainly don't see
any evidence of anything distinguishing between Yankees fans and Red Sox
fans.
DR. CERF: Could I just ask one question about this? It's
always bothered me that people use the phrase "blueprint," for example,
to describe the human genome or any genome. And I don't think I think
of it that way and I'm hoping that you will agree. It really feels more
like it's a program that gets interpreted, and you start out with one
cell, and then it gets fertilized and then things start to happen. And
it's that sequence and portions of it that get interpreted and produce
proteins and create -- so it's more like executing a program and then
having a result as opposed to simply being blueprint.
DR. LANDER: It's both the data and the program itself. But
I've got to emphasize that when you get the CD, you don't know how to
read the program any more than if you got a CD of ones and zeros for a
whole bunch of computer programs written in a language that you couldn't
understand.
DR. CERF: Or didn't know -- right.
DR. LANDER: -- or didn't know. And so, in fact, we're
dealing with a language here that is three billion years old, and it's
got patches and patches on the code by evolution. It's never been
documented very carefully -- you think you've got problems with
documentation -- (laughter) -- this stuff hasn't been documented --
DR. CERF: Wait a minute -- is there a Y2K problem with the
human genome? (Laughter.)
DR. LANDER: There's a Y-3 billion problem. That's the issue.
(Laughter.)
DR. CERF: I'm not worried about that. (Laughter and
applause.)
DR. LANDER: No, no, I mean that quite seriously. If you have
trouble sorting out Y2K problems in a piece of Fortran code written in
the 1960s, just imagine the issues in trying to decipher the workings of
software that's the product of 3 billion years.
DR. CERF: You know, I used to think we were going to get
people angry at us for the Y10K problem, right, when they'll say, "why
didn't those jerks 8,000 years ago fix it with an extra fifth digit?"
Now, you're wondering why didn't that stupid bacterium -- (laughter) --
three billion years ago -- why didn't you do it the other way?
MRS. CLINTON: I have to ask Stephen J. Gould, since he sort
of alluded to this by raising the Red Sox and the Yankees, how would you
answer the question about what genetics will tell us about behavior? Is
a Red Sox or a Yankee fan bred in the DNA? What is it we're going to
find out about behavior?
DR. GOULD: Certainly not. There is a basic human nature
based on the very minor extent of the differences that Eric so well
specified. But most of what interests us is the enormous cultural
overlay, which is obviously permitted by our common genetic nature, but
that's not a particularly informative statement. Thank goodness the
richness of our differences in our cultures is not so specified, and is
what is influenced is enormously flexible and that will preserve our
diverse humanity and so biology will join culture and even give us some
liberty, thereby.
MS. LOVELL: Mary Davidson. As executive director for the
Alliance of Genetic Support Groups, you represent people with
genetically based conditions.
Q Yes. I have a question for you, Dr. Lander. I'm speaking
from the perspective of families that look to genetics with such
tremendous hope, but still with their eyes open for the undertow that
we've been talking about. So let's put ourselves in a very personal
position. Do I really want to know if I have a predisposition for a
disease for which there is currently no medical treatment? And if I
know that I'm already -- if I already know that I'm at risk for a
disease, what happens to me and my family, then, in the lag time between
obtaining this knowledge, having it on my medical record, and then a
treatment certainly being developed in the, I hope, near future?
DR. CERF: Boy, science is a lot easier than policy, isn't it?
DR. LANDER: Yes. Your first question, do you want to know
about genetic information concerning traits where you can't do anything
today, at least where there's no treatment today -- well, in some cases
you might. There might be instances -- for example, people with
Huntington's disease or at risk for Huntington's disease may still want
to know because it will affect their reproductive decisions, or may
affect their reproductive decisions. And so there can be instances
where that would be useful.
There may be instances where early screening might still be of
some benefit -- you don't have very good treatments, but there might be
purposes with regard to some cancers where early screening might be of
value.
But now, if we can't do anything about it, on the whole it's
not clear to me that that information really does anyone any good --
although I must say that if the person wants to know, they have every
right to know. We're going to have -- as you point to -- this very
uncomfortable lag period between when we can predict and when we can
prevent, or cure.
It's going to vary tremendously. For some diseases, it might
be a couple years, and for other diseases it could be a century, because
we might not have a way to get into the right cell in the brain to be
able to do something. We have to be honest about that.
Genetics holds tremendous promise, but it doesn't guarantee
that understanding is a cure. It's just that ignorance is usually a
tremendous obstacle to the possibility of a cure, and that's all that
science can hold out.
We are going to have to help families get the information to
make the choices about what they want to know. We clearly want to know
it as scientists. We want to be able to race as quickly as possible to
preventive therapy. But this is going to have to be a conversation, and
a multi-textured conversation, because every genetic disease is
different with regards to its risks, with regards to the people it
affects -- young children or older people in life. That's why I think
it's so important that we have a dialogue between scientists and the
general public on this.
DR. CERF: Could I just find out something here? Now, I think
about how difficult it is for us to understand the behavior of the
Internet and all the computers that are on it, and all the software
that's on it. And yet that system, in some ways, is not even as complex
as the interactions that happen in our human bodies, as our bodies
develop and as the DNA is interpreted. People sometimes must get the
idea that this is like clockwork, and it isn't. We don't actually know
what will happen. We know what might happen, but we don't know deeply
exactly what will, and we can't predict it.
So people who get this genetic information and misunderstand
it to be a prescription, a prediction, would be terribly misled. And,
in fact, I don't even know if you can quantify how little we actually
can say about what the outcomes are going to be. It's so complex.
DR. LANDER: But it varies for each disease --
DR. CERF: That's the point.
DR. LANDER: -- and in some cases we do know things. You know,
we can't deny the fact that there are genes that confer a risk of early
onset breast cancer. And we can statistically measure the population,
and say with some statistical certainty, even if we don't know the whole
circuitry of how it happens -- although a great deal of progress has
been made on that -- that a young woman who's diagnosed -- who is told
that she has a particular mutation has a particular risk in life.
Now, it may be that some environments will push it one way or
the other, and we don't know enough about it, and that we're giving an
overall average number to everybody. But that number's still very
different than the background risk.
DR. CERF: Well, I understand that --
DR. LANDER: So we struggle our way up with very imperfect
information. But it's valuable information.
DR. CERF: Are there cases where there isn't any doubt? In
other words, a genetic mistake will absolutely, 100 percent, guarantee
there's something broken? Can you give us some examples?
DR. LANDER: Many examples of that. Huntington's disease,
that I alluded to briefly, has a virtually 100 percent penetrance -- the
word we use for a probability of effect -- in the course of life. There
are a handful of cases where it might be put off rather late. There are
many relatively rare genetic diseases where a gene is just plain broken,
and it's clear that every individual who inherits that broken copy or
two broken copies from each parent, will indeed have that genetic
condition. The tough cases are the ones -- the ills that afflict most
of us: heart disease, diabetes --
DR. CERF: Okay, those have variations --
DR. LANDER: Those are the ones that are multifactorial, that
do interact a great deal with environment. Those are the ones most
people will be interested in in the long run, and those are the ones
where we have the most work ahead to do. But there's the whole range,
from certainties to things that, in fact, can be completely modified by
environment.
Let me give you one small example. We test every child in
America today for a genetic disease. It's called phenylketonuria.
Babies are tested with a heel stick at birth to see if they have this
rare genetic disorder called phenylketonuria. Those few babies that
have it lack an enzyme for digesting a nutrient, phenylalanine. It
happens to be in NutraSweet, so every Diet Coke can -- I saw the
President drinking Diet Coke -- if you look on the side, it says,
"Warning to phenylketonuric: contains phenylalanine." It's a genetic
warning on your Diet Coke can.
DR. CERF: Oh, and you can't digest --
DR. LANDER: My point is, they can't digest that nutrient.
And if they have it from birth, it will build up and poison their brain.
And it's a 100 percent form of mental retardation -- except that if you
know it, you can put them on low-phenylalanine diets from birth and
they'll have normal intelligence. You've got there an instance where
we've got something that's completely genetic, but, of course, it's
completely changeable with environment. That's the range of complexity
we're talking about.
DR. CERF: So let's follow up on that, if it's okay. What --
suppose we know this. We know that we've got that broken gene. Now,
you said, let's change the diet to deal with the side effects.
DR. LANDER: As long as we're lucky, in this case, we could.
DR. CERF: Now, is there anything else that we might
anticipate? Can you actually imagine genetic therapy that goes and does
something that will correct the problem?
DR. LANDER: Sure. You can imagine pharmaceutical companies
developing a small molecule, a drug, that tickled some other gene to
make up for that deficit. And that actually happens. There are
strategies like that. You can imagine gene therapies, where some kind
of a viral vector restores the missing gene -- a clotting factor, for
example, into some cells in the body.
There's a whole myriad of possibilities. The thing about the
genome project is it gets you that basic information, but then it splays
out in a hundred directions of possible therapies that we may have to
do, and there's just a century of biomedical research that's going to
have to follow on to be able to deliver on the possibilities for each of
those.
DR. CERF: To draw the informatics and genomics together for a
moment, we wouldn't be able to do some of these things if we didn't have
the computing horsepower and the memory and the ability to share the
information that we have now. That's fascinating.
DR. LANDER: Not a chance. That's right.
MRS. CLINTON: We have also with us Dr. Francis Collins, and I
know you've thought a lot about this question about the gap between
information and treatment. And I wanted to ask you what you thought.
DR. COLLINS: Well, it's an interesting discussion we're
having. And I think from the perspective of individuals who currently
suffer from some of these diseases, or they exist in their families,
there's a great sense of impatience -- where are the cures, where are
the end points to this very promising research? As a physician I'm very
sympathetic with that.
I think what we're talking about here is working on a pathway
towards the top of the mountain. The top of the mountain is curing
diabetes, curing hypertension, curing cancer, curing schizophrenia. But
to get to the top of the mountain you have to travel a certain path.
The excitement we're talking about this evening is the genetics of
genomics provides us with a path that we didn't have before. It's a
very powerful way to get to the top of that mountain; but we shouldn't
fool ourselves that by building this base camp called the human genome
we're already up there and have solved all of those disorders. But it
is the best way going right now to get to that point.
And there is already good news around us with some of the
hills nearby beginning to be scaled. We talked about various examples.
I put forward the example of colon cancer, where we now know how to
identify the roughly half a million people in the United States that are
very high risk for colon cancer. There is a circumstance where it's not
a diet or a drug, it's surveillance.
If you know that you're in that category, you get your
colonoscopy beginning at age 40 and do that every couple of years;
you're going to find that polyp while it's still small enough to be
removed, and you'll save that death from metastatic colon cancer, which
is an awful one.
So there is a circumstance where the diagnosis itself can be
life-saving. But to be honest, the diseases won't all be like that.
And then we have to keep climbing up the mountain. And some of the
things we'll find at the top of the mountain will be gene therapies and
some of them will be drug therapies. And if you're a family with that
disease, you don't care as long as it's one of those and as long as it
works.
Cystic fibrosis was mentioned by Eric earlier on. I had the
privilege of being part of the team that found that gene, and it's 10
years on and we haven't cured it yet. But, you know, there are now a
dozen drugs in clinical trials for cystic fibrosis that have come about
because we understand how the gene works. We wouldn't be at that point
now if we hadn't had that basis, that foundation, that infrastructure of
understanding the genetics of this disease, which was a total puzzle
until 10 years ago.
So one should be both optimistic about where we're headed to
and realistic about what the challenge involves and how much more
medical research we need.
MS. LOVELL: Now, we are going to go back to the Internet, and
it's for you, Mrs. Clinton.
MRS. CLINTON: This is a question from Danella Bryce
(phonetic) from Sydney, Australia. And the question is: Obviously the
power and the concept of the modern information technology is
tremendous. The fact that I can sit here in my office in Sydney and
send this question is a remarkable thing.
However, for the past 25 years, I have been working with poor
communities in developing countries trying to assist them just to reach
a reasonable, sustainable level of development. How can the new
technologies which are such a powerful information tool be harnessed to
assist in the global battle to alleviate the growing numbers of people
living in very disadvantaged circumstances?
DR. CERF: Well, let's see. First of all --
THE PRESIDENT: Can I give -- you said that we got 6 billion
people last night. Half of them live on $2 a day; 1.3 billion live on
$1 a day or less. Those are the numbers behind what Ms. Bryce is
asking.
DR. CERF: The first problem is that you can't take this
technology and just put it someplace and expect it to solve all the
problems that poverty and lack of infrastructure and lack of sanitation
and lack of education and everything else visit upon us, so the
beginning of all this is that you have to make investments in
infrastructure in those countries where there isn't any in order to get
them to the point where these new technologies can actually be of use.
There are pockets of times when the technology can be
installed and used immediately. For example, in medical treatment -- in
obtaining important information about economics and how to operate
country, that information can be made available immediately, but in
small places -- at university, within the administration. But for the
general population, the first problem is getting them to the point where
this technology actually is useful.
I can remember an effort at one time to send personal
computers to Africa in the hope that somehow, this would help them
leapfrog into the 21st century. Well, the first thing you discover is,
there isn't any electrical power, or if there is, it's not very
reliable. Then you discover that the physical housing available for
where you put the equipment is leaky and rain comes in, and even more
amazing, there are a lot of bugs that crawl around and they're not the
software, they're the real kinds that crawl into the machines and they
do funny things to the equipment.
So then you don't have enough people who are trained in order
to maintain and operate the gear. So this -- it's not true that every
country in the world that is still unable to take maximum advantage of
this has to go through everything we can before they can get there, but
there are some basic things that have to happen.
Just as a small example, the World Bank says that for every
dollar invested in telecommunications infrastructure $3 of gross
national product can be expected to arise from that. There are formulas
like that that people can begin to work with, but believe me, this is a
long, hard process.
A good piece of news is that all of the costs of this gear is
dropping dramatically. You hear about the $200 computer. These are --
consumer prices, by our standards, they're still sky-high by the
standards of countries that President Clinton mentioned. But the fact
is, the technology is rapidly becoming less and less expensive.
Someday, Eric, we may actually be able to grow our computers
because they'll be molecular in nature, and we'll use something very
like a string of DNA to describe what's supposed to happen, and the
thing will actually get created. So at some point, we'll be able to
deliver these things at very low cost, but it's going to take another
mountain to climb like the one we talked about earlier.
THE PRESIDENT: If I might just interject, I don't know the
answer to this, but I've spent a lot of time thinking about it. This
woman, Ms. Bryce, she works and she's talked about she works in
sustainable development. A big problem in poor countries, they totally
destroy the environment to try to develop and then they don't have
anything upon which to develop. The biggest problem in our hemisphere
is Haiti -- if you fly over the island of Hispaniola you know when
you're going from the Dominican Republic to Haiti because in all the
years when it was governed by dictatorships they just tore down all the
trees and -- if any of you know anything about it, know this.
The real question is, we used to have certain assumptions abut
development in a poor country; that if you wanted ever to build a middle
class life for a substantial number of the people, yet have X amount of
electric generating capacity, and you had to have Y number of roads, and
you had to have Z number of manufacturing companies, no matter what they
did to greenhouse gases, and that eventually you get around to building
schools and universal education -- and then 30 or 40 years later you
start letting the girls go to school with the boys and there is this
sort of thing that would happen.
I do believe that the question, the real question is if you're
running a country like this, should you put this sort of infrastructure
development first? That is assuming you've got a base level of
electricity necessary to run a system. Should you do this first because
this gives you the possibility to skip a whole generation of development
that would otherwise take 30 years in the economy and in education. And
I think the answer to that at least is, maybe. That I think is really
the question that this woman is asking.
DR. CERF: I have an example. A few weeks ago I got an
e-mail, and the e-mail was an offer to do work. Basically, it said if
you have web pages that you want to have formatted and put on a web
site, for $125 I'll do 10 of these pages. Send me a Microsoft word file
or a text file -- and, oh, by the way, if you don't have a web site, for
$250 a year I'll provide that for you, as well. This was signed by a
guy in Bangalore, India.
Now, I was very impressed when I read that because this guy
had figured out how to virtually export the talent in the country --
graduates of the Indian Institute of Technology -- to do work and to
bring in hard currency into India from outside. And so that notion of
being able to outfit a population with the ability to work not only
locally, but elsewhere in the world through the net, is a very appealing
one. I find it's taking hold in other places -- in Ireland, in
Scotland, in Costa Rica, in Israel, in South Africa, and in Russia,
where there are programmers working for Sun Microsystems, exporting
their results through the net. So I think the maybe -- it may be even a
little stronger than that. We'll have to see how this turns out.
THE PRESIDENT: If I could just give you one example, because
I think this may have also relevance for remote, physically remote areas
in America -- Appalachia, the Native American reservations, things of
this kind.
We were talking before we came in here tonight -- I was out in
northern California the weekend before last. And I was talking with a
lot of people who work for E-Bay, and they were telling me that there
are now, in addition to the employees of E-Bay, over 20,000 people who
make a living on E-Bay, buying and selling and trading -- and that a
fair number of these people were actually people who once were on
welfare, who moved from welfare to work. That is, from -- and
presumably a lot of them work -- didn't have a lot of formal education.
They had made this jump, and a market had been created for them, where
they lived, that otherwise would be alien to their own experience. They
wouldn't have been able to go down to the bank and get a loan, and on
and on and on.
Now, last year we made -- and this year we will make, through
our aid programs in foreign countries -- over 2 million microenterprise
loans to poor people, to help them start their businesses in Africa, and
Latin America, and Asia. If you could somehow marry the microenterprise
concept to setting the infrastructure of the Internet out there, I do
think it's quite possible that you could skip a generation in economic
development in a way that would reinforce rather than undermine the
environment.
DR. CERF: The operative word here is "infrastructure." And
you do have to have a certain minimum amount of it in order to make this
stuff function reliably. And, of course, it has to be reliable, or you
can't make a living out of it.
MS. LOVELL: Well, this is the perfect jump to Dr. Vanessa
Gamble's question. She's from the Center for the Study of Race and
Ethnicity at the University of Wisconsin. And as someone who worked to
right the wrongs of the original Tuskegee study, I know you have a very
special concern for access and for fairness.
Q This is a follow-up question that goes into inequities.
We've talked about some of the benefits of these technologies. And I
think the question we have now is about the inequities and lack of
access not just around the world, but in our own country. And how do we
make sure that as we move forward, that all communities in this country
are involved in the debates, and also get the benefits of these new
technologies -- that you've talked about the benefits, to make sure
everyone is included?
MS. LOVELL: That's really for both of you.
DR. CERF: Well, here we go -- two things. First of all, it's
been possible to make things like Internet accessible in places where it
hasn't normally been available, or it's not affordable, by putting it
into public institutions, into publicly accessible kiosks and things of
that kind -- in libraries, in schools. There's a major program, as you
know, that has been undertaken called NetDay, to try to wire various of
the schools up and provide them with access to the system.
We have to pay attention, just like Andrew Carnegie did 100
years ago, to making these facilities accessible to everyone who wishes
to take advantage of them. And I remind you again of the horse to
water; not everyone is willing to take advantage of these things. But
where they will, we should make them accessible.
The other good news is that the cost of doing these things is
dropping very rapidly. Not only is the cost of the equipment dropping,
but the cost of telecommunications as well. And so, as time goes on,
these things will become more and more in the reach of everyone. That's
been true of most of the advances in technology that I can think of. In
my own lifetime, color television -- which used to cost $1,000 in 1950
-- is a lot less expensive now, in today's dollars, than it was in the
equivalent dollars 10, 20 or 30 years ago.
So that's a simplistic answer, and I'm not trying to argue
that that's all there is to it. But the fact is that the thrust of all
this is actually in our favor. The costs are coming down, and making
things much more accessible than they would otherwise be.
THE PRESIDENT: Did you say you expected the penetration of
the Internet to equal that of the telephone by 2006?
DR. CERF: It will exceed the penetration -- now, not
necessarily -- it will be the same size as the telephone system by 2006.
But I believe Internet will actually penetrate more deeply than the
telephone or the television have. And the reason is those little tiny
chips that I showed you a picture of before, they will penetrate into
products that people just buy without thinking about them being
computers. They're simply devices that do things for you.
THE PRESIDENT: I want t get to the genes, but I think we
should answer that question, too. This whole question of whether we're
going to develop a digital divide in our country I think is a very, very
serious one. Our administration, especially the Vice President, when we
rewrote the Telecommunications Act, we fought very hard not only to get
people to participate in NetDay to hook up every classroom and library
to the Internet by the year 2000 -- I think we'll get there by the end
of the year; functionally, we'll be just about there -- but also, to get
the Federal Communications Commission to adopt an E-rate which would
subsidize the cost to poor schools and poorer hospitals in poor areas
and isolated rural areas, so that everyone could have access in the
schools.
Now, but the divide won't be bridged until the parents of
those children have that in their home. So I think we ought to have as
a goal at least to make access to computer technology and to the
Internet as universal as telephone access is. And I think until we
achieve that, there will be a digital divide, so we ought to try to
hasten that day and promote whatever policies we can afford or we can
achieve to hasten that day, because until we do, there will be a digital
divide.
DR. CERF: I agree with that. In fact, it's a goal, a
personal goal of mine, is to see, literally, Internet everywhere.
THE PRESIDENT: Now, what about the gene? That goes to
patenting and all that, doesn't it?
DR. LANDER: Well, I think in a sense, the different
communities and how they're going to be affected by this and what access
they really have is much less with respect to genetics as a question of
technology or infrastructure or cost than it is a question of
understanding and education. I think, in fact, those whole genetic
technology can look exceedingly complicated. And in its detail for each
disease, it is very complicated. You've really got to know.
But there is a level of basic understanding about genetics and
the choices and a few examples that everyone ought to know, because you
can use them as reference points, as touchstones, for the other choices
to come ahead. And I think every community, every ethnic community,
every state, all of the different types of communities we have in this
country ought to be having conversations about those basic fundamental
choices, those basic fundamental examples, because as problems come up,
we're going to need to refer back to them.
In a sense, it's easier than your problem. I don't have to
wire up everything. In a sense, it's harder, because we have to
penetrate people's understanding and their consciousness. We've got to
get the different perspectives of different communities on the sorts of
choices we're going to have. And different communities -- and I know
your work, particularly with regard to examples in the African American
community where, in fact, failing to pay attention to that really was
quite a mistake. We've got to get that conversation going. I think, in
fact, we can afford to do that, but it's going to take very active work
to make sure we do do that.
DR. CERF: You know, the good news is that we have shown in
the last 20 years that we can affect people's behavior, right? Look at
smoking. Look at eating habits.
DR. LANDER: We should have done better on smoking.
DR. CERF: The point is that -- I mean, you can't smoke in the
restaurants anymore, right? I mean, you can't smoke on an airplane. So
we've managed to get people to pay attention to things that are
important, and it seems to me we can do the same in matters related to
genetics.
DR. LANDER: But we've got to understand how it is that -- we
can't just get them to pay attention; we've got to understand how it's
going to make a difference in their lives. We've got to listen, also.
And it's that back and forth that we've really got to be doing.
DR. CERF: Amen to that.
MRS. CLINTON: You know, one of the issues that your question,
though, raises, which is a larger one, is how this conversation that
we're having tonight gets translated into decision-making at levels of
government and within the private sector as well as the public. And it
does strike me that there are some issues that have to be addressed now,
even though we don't know the full implications of what's going to
happen later, And how we create a climate in which what happens to your
genome is as important as what happens to your taxes -- (laughter) -- is
a very challenging question.
And the President said something that -- he used the word
"patent" -- there's a big debate about who will own this information and
how will that information be used. Because in order to have the kind of
openness of discussion that can lead to creating a climate that would
influence decisions, there has to be a lot of give-and-take, and people
have to have some interest in creating awareness among the public and
not hoarding information.
So what do you say to the question about, well, what's going
to happen to this genome information? Is it going to be the proprietary
information of certain companies that then will be able to basically
control information about it and the use of it, or not? And, if that's
an open question, what do people in positions like the President and
others sitting in this room have to begin doing to make sure that we
keep the climate open enough so that when decisions have to be made
we're able to do it?
DR. LANDER: I think there are two answers to that. One, it's
unambiguously the case that information about the human genome has to be
freely available to everyone in the world, to scientists, to
non-scientists. It has to be viewed as a public right to have that
information.
Now, we can guarantee that right. The way we guarantee that
right is we, as a country, pay to get that information and put it in the
public domain. That is, indeed, our policy now and we're doing it. I
don't for a moment say that companies also shouldn't be gathering that
information and doing good things with it because, in fact, they need to
do that in order to deliver on the promise of cures and therapies.
But the core information at the heart of the genome, the
genes, the variation, the circuitry ought to be out on the web for all
to see -- for all these nine-year-olds who are going to be inventing new
genetic circuits. We can guarantee that.
We do have a question about patents. Patents are a separate
question, of course, than access to information. In essence, to get a
patent, you do have to disclose your invention. So the second question
is, what's the state of patent policy and are there issues there? Well,
yes, I think there are. It is important to say that there is a role for
patenting.
If a pharmaceutical company wishes to develop a drug and
invest $100 million to do so, it sure wants to know that when it comes
to market, its competitor can't free ride on the clinical trials they
did and bring the same drug to market. So we clearly need to be able to
allow patents on some things to protect intellectual property and
investment.
But I do think we're creating a thicket of patents right now.
We're giving out patents willy-nilly for very, very slight investments.
And I think in the long run that's a big mistake. In the 1800s, when
you wanted to get land in the Homestead Act you had to work it for a
while, you really had to do something important -- you couldn't just
walk the boundaries and go file a claim.
What we have a situation right now is we have generic
invention. You can discover all sorts of things pretty easily by
computer and our patent policy hasn't yet caught up with that. And I
think we are giving patents away and -- sort of a social contract -- we
incent inventors to invent by giving them monopolies. But then we, as
society, ought to get a good deal for that, and so we want to be certain
that we set the bar high enough.
And I think that's actually an important thing, if I can say
to people in a position to do something about it, to go back and look at
our patent policy and ask whether this kind of generic discovery,
generic invention really ought to meet the standard -- because I think
it will create a set of boundaries and fences that are going to make it
hard in the decades ahead for a pharmaceutical company that really wants
to put the hard work into finding a therapy and a cure to operate,
because they're constantly going to be bouncing up against boundaries of
intellectual property.
So I think it's not an absolute question. There's a role for
intellectual property. But it is one of a degree and I, for one, think
we're a little bit off on that and it would bear some thinking.
MS. LOVELL: I think, actually, Arthur Holden has a good
follow-up question on that. He's the CEO of the newly formed SNIP
consortium. That is a group of 10 pharmaceutical companies that will be
posting their research in the public domain, as the government is doing.
Q Very much a complementary activity to the public activities
that are going on. Let me build on Francis's analogy of a base camp.
We've essentially -- in completion of the sequence of the human genome
we've created a base camp. And with that, as we've alluded to in the
dialogue, a whole series of potentially fairly important questions.
What are the few critical questions you think as over the next few years
we get this base camp established, how should we begin to move up that
mountain, number one. And, number two, the collaboration between the
public and the private sector, which has been so critical in
establishing that base camp -- how do you see that changing?
DR. LANDER: Two good questions. With regard to the
information to come, the work to be done -- when we have that basic
description of all the letters of the human genome there's a huge amount
of work to be done. And I think it's going to look something like this.
You've got to run through those letters and figure out where the genes
are. That's not so trivial to do. We've got little bits, but no more
than you can figure out exactly where one program starts and stops if
you don't know the computer language, can we figure out where the genes
are.
We have tricks for doing that and a lot of progress has been
made, but we'll be using all sorts of things like sequencing other
organisms. It turns out if you line up the human and the mouse
sequence, almost all the genes have been conserved. The mouse also has
3 billion letters of genetic information and 100,000 genes. We are, in
fact, not that different from mice, if you think about it -- (laughter)
-- in terms of body plan. We've got all the same organs that pretty
much has got to have the same instructions, and it does. When you look
at the genetic code our best way to find out how it functions is you
line up the human sequence, the mouse sequence, and you look at what
bits match . And that's the stuff that matters.
About 4 or 5 percent of your genetic code matters a great
deal. Evolution has conserved it, and we can pick out the coding
regions and the regulatory regions. And it's at the core of all genetic
research today.
I say this advisedly because, at the same time, Kansas thinks
evolution is such a shaky theory we shouldn't even mention it in the
curriculum -- (laughter) -- and it's at the core of what we're doing to
try to figure out how to understand how the genome works.
Second off, we're going to take movies of how all the genes
work. These detectors I briefly showed of how the genes turn on and off
and different cells and different diseases, they'll be classifications
of every tumor. There are already projects to do things like that.
Classifications of what happens when a cell develops, when an organism
develops. And all that data showing up on the web already -- people are
writing programs to figure out how it all interacts and pick up the
regulatory regions. We're going to annotate those genes by the common
variants in the population and all of that is public data that needs to
be out there.
At the same time, take any one disease, and the work needed to
produce a therapy or a cure is monumental. It is going to require
private investment. It's going to require the possibility of profit on
that. And so I'm pleased to see things like this consortium that are
pre-competitive efforts of industry to try to lay that common
infrastructure, and the role for the private sector in this is to take
particular targets and deliver on them in a way that, as a public
effort, we can't possibly do.
DR. CERF: Once we know, for example -- there is this little
transparent worm called synarabditis elegans (phonetic.)
DR. LANDER: Bob Waterston, over there, was responsible in
large part for the sequence of that organism.
DR. CERF: Okay, so now -- thank you. Once we now have the
sequence -- (laughter) -- now we have the sequence of this little
half-inch organism, and now is it possible for us to actually watch how
that sequence of genes gets interpreted so we can understand the
complete development of that little worm? And if we know that, how does
that help us with the bigger problem of understanding development in the
human --
DR. LANDER: The answer in short is, yes, for the most part.
we can know all the genes, we can figure out in what part of the body
they're expressed. It takes work to do that. We can figure out under
what circumstances they turn on and off. All of that gets us a kind of
a program for how the worm works. And that's the work of another two
decades ahead, but it's clear how that's going to happen. But how does
it help us? It helps us in a remarkable way.
You see, the shock of genomics is this point about evolution.
The same genes that lay out body plans in, for example, a fruit fly, or
the genes that lay out the body plan in the developing human embryo, in
fact, we look very different. but that same set of genes were invented
about half a billion years ago, and they've been used and reused to do
the same thing.
Now, if you want to understand birth defects, go do it in a
manipulable system like fruit flies, or go look at the way that
different pathways of signaling in the development of that clear worm
you referred to work, because there are pathways of signaling in that
worm that are the same as the pathways of signaling in human cancer
cells.
DR. CERF: See, now this is starting to get really cool. Is
it possible -- (laughter) --
DR. LANDER: We think so. This is good stuff.
DR. CERF: Have I got enough computing power so I could
simulate that whole thing?
DR. LANDER: No.
DR. CERF: No? You want to bet? (Laughter.)
DR. LANDER: Okay, you've got a deal.
DR. CERF: I've got a bet. Okay, we've got a bet. We're
going to work on this one. (Laughter.)
DR. LANDER: We'll get back to you on this one. (Laughter.)
DR. CERF: I mean, that could really be something if we could
simulate the whole thing.
MRS. CLINTON: You mentioned one of the words that I think is
in people's minds when they hope about what can come from this, and
that's cancer. And we have somebody with us who has committed his life
and his career to understanding and working on issues like that, and
that's Harold Varmus, who is the outgoing head of NIH, and has been for
the last six years -- and I think, by unanimous agreement, has done a
superb job.
And I wanted to ask Dr. Varmus -- you know, we've committed
huge resources to trying to find a cure for cancer, and there certainly
has been progress that's been made. But what major gains lie in the
near future, and how will the Human Genome Project get us closer to a
cure?
DR. VARMUS: I assume by "outgoing" you meant I'm leaving, as
opposed to my social behavior. (Laughter.)
THE PRESIDENT: You mean, as if an outgoing head of NIH were
an oxymoron? (Laughter and applause.)
DR. VARMUS: Let me take this back to the direction you
intended to go. (Laughter.)
Well, indeed, the genome project is going to affect our
approach to many different kinds of diseases. But you've heard the word
cancer appear many times tonight. And let me explain why that is.
Cancer is essentially a genetic disease. And by that I mean
not that it's simply oftentimes inherited, but it's a disease that
results from accumulation of genetic variation. Some of that variation
may be, in some cases, inherited. But much of it occurs during our
lives when -- during the natural division of cells, mistakes occur, or
cells are exposed to environmental agents that cause genetic damage we
refer to as mutations or variation, and it's an accumulation of those
changes that results in the alterations of normal cell behavior to
cancer cell behavior.
The constellation of changes that occur in the different types
of cells give rise to lung cancer and pancreatic cancer and breast
cancer and others, varies from organ to organ, and it may even vary
within one tumor type and another -- that is, within a single tumor
type. Knowing which genes are affected, what the actual variations are,
how those variations change the pattern of expression that Eric referred
to that we can now visualize by putting all the genes on the chip and
looking at the patterns of expression, revolutionizing every aspect of
our approach to cancer.
We're now in a position to evaluate individual susceptibility
to a number of cancers. Francis referred to one example, colon cancer,
but many other examples exist in the skin, breast and elsewhere.
Secondly, we have options for much better definition of
cancer. Cancer that may look the same -- two cancers that may look the
same to a pathologist may look very different to someone who manipulates
genes and looks at the patterns of expression. We now know that making
those kinds of assessments can actually predict the right kind of
therapy to use and predict the likelihood of a favorable or unfavorable
outcome.
Finally, knowing which genes are affected is changing our
approaches to designing preventive and therapeutic strategies. This is
something which is going to come to fruition over the next 20 or 30
years, but already we're seeing harbingers of good news. There are
therapies for breast cancer, for example, which are based on our
knowledge of the few genes we already have in hand that we know to be
important in cancer, knowing something about the kinds of proteins those
genes make, what those proteins do, where they are positioned on cells.
And it's this kind of tremendous bounty of information that's going to
come from the genome project when we know all genes and know about their
mutations and know about the behaviors of the proteins they make, which,
in combination with the kind of information technology that is now
available, will create a new world in cancer.
Now, this doesn't come without a cost. Some of the costs have
been alluded to with respect to privacy and protection against
discrimination. The investment we've got to make as a nation and a
world to achieve these goals and very importantly, to refer to the issue
of equity that was mentioned before, some of these things are going to
cost a lot of money. We have to protect our citizens so that all are
beneficiaries of the research and the products of research the nation
has invested in it.
MRS. CLINTON: Dr. Varmus, is it likely that we will find out
that every one of us is susceptible to something?
DR. VARMUS: Absolutely. We're talking about risks and there
are relative risks. Eric mentioned a couple of diseases that we know
are almost inevitable given a certain variation in the genetic code.
But the vast majority of diseases that you and I are heir to are going
to be contributed to by a large number of variations.
Even the cancers that we now understand to be influenced by
inherited mutations are likely of different frequencies in different
people, because of our environmental exposures and because of other
genes that we've inherited that modify the effects of those central
players.
So this is very complicated stuff. And because we do have --
I mean, Eric and I may look somewhat similar, but we probably have 3
million differences between us. Some of those differences don't amount
to a hill of beans, because they're differences that are in DNA that
doesn't matter very much -- junk DNA. But some of those differences are
quite important. And some of them are going to make him more likely
than me to have one set of diseases, and me another set.
It's going to be a long time before we have enough information
to say what real risks accrue to each of us, but no doubt that -- this
gets back to the insurance problem. And I agree entirely with Eric,
that we should think of insurance as a way of providing pooled
protection for the population, and not a system that is based on a
gaining that allows individuals to seek the genetic information and then
provide special protection for themselves based on that information.
THE PRESIDENT: Before we go on, I just want to say -- we sort
of glided over this -- this man has done a magnificent job at the NIH
for a long time, and I am very grateful. Thank you for that, for your
service. (Applause.)
MRS. CLINTON: I think we have time for one last question from
the Internet, and this is from Kristin Janger (phonetic) from Vienna,
Virginia. And the question is: What are some potential commercial
applications or products that may emerge from advances in information
technology and genetic research?
DR. CHEF: Together? Together? Wow. Well, some obvious
ones, right? We've already touched on them. The ability to understand
how the genome works allows us to simulate a lot of the therapies that
we otherwise would have to test in more primitive ways.
And so, Eric, I would pose for discussion the possibility of
being able to analyze and design therapies based on enough computing
power to simulate what the effects would |