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(Narrator) When I look at this, and these 
are 3 billion

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chemical letters. Instructions for a human

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being, my eyes glaze over,

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(laughing)

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but when scientist, Eric Lander looks at

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this, he sees stories.

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(Eric) The genome is a storybook

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that's been edited for a couple billion

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years, and you couldn't take it

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to bed like a 1,001 Arabian nights and

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read a different story in the genome

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every night.

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(Narrator) This is the story of one of

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the greatest scientific adventures ever.

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And at the heart of it, is a small, very

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powerful molecule, DNA.

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For the past ten years, scientists

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all over the world have been painstakingly

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trying to read the tiny instructions

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buried inside our DNA.

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And now, finally, the human genome has

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been decoded.

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(Craig) We're at the moment the scientists


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wait for. This is what we wanted to do.

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We're now examining

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and interpreting the genetic code.

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(Francis) This is the ultimate

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imaginable thing that one could do,

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scientifically, is to go look at our

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own instruction book, and then try

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to figure out what it's telling us.

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(Narrator) What it's telling us is so

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surprising, and so strange, and so

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unexpected.

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(Narrator) 50% of the genes in a banana

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are in us.
(Eric) How different are you from a banana

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I feel like I can say this with

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some authority, very different

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from a banana.
(Eric) You may feel different from a

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banana.

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All the machinery for replicating your
DNA, all the machinery for controlling

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the cell-cycle, the cell surface, for
making nutrients, all that's the same.

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(Narrator) So what does any of this
information have to do

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with you, or me? Perhaps more than we

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could possibly imagine.

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Which one of us will get cancer, or
arthritis, or Alzheimer's.

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Will there be cures? Will parents in the
future, be able to determine their

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children's genetic destinies.

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(Eric) We've opened the box here

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that's got a huge amount of valuable 
information.

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It is the key to understanding disease

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and, in the long run, to curing disease.

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But having opened it... we're also gonna

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be very uncomfortable with that info

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for some time to come.

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(Narrator) Yes, some of the info

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you're about to see will make you

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very uncomfortable, on the other hand,
some of it, I

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think you will find amazing and hopeful.

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I'm Robert Krulwich, and tonight, we will

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not only report the latest discoveries of

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the Human Genome Project, you will meet

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the people who made those discoveries

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possible, and who competed furiously to

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be first to be done. And as you watch

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our program on the human genome,

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We will be raising a number of issues,

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genes and privacy, genes and corporate
profits,

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genes and the odd similarity between you

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and yeast. And we'd like to have your

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thoughts on all these subjects, so please,

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if you will, login to Nova's website. It's

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located at PBS.org. It'll be there
after the

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broadcast, so do it after the 
broadcast,

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where you can take a survey, 
the results will

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be immediately available and continually

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updated. We'll be right back.

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♪ (Intro music playing) ♪

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(Man) Major funding for Nova is provided

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by the Park Foundation, dedicated 
to education

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and quality television.

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(Man) This program is funded, in-part, by

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the Northwestern Mutual Foundation.

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Some people already know, Northwestern
Mutual can help plan

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for your children's education.

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Are you there yet?

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Northwestern Mutual Financial Network.

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(Woman) Scientific achievement is fueled

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by the simple desire to make things clear.

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Sprint PCS is proud to support Nova.

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(Man) Major funding for this program is

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provided by, "The National Science
Foundation."

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- America's investment in the future.

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(Man) And by the Corporation For Public
Broadcasting

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and by contributions to your PBS station

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from viewers like you.

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Thank you.

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(Narrator) To begin, let's go back 
4-and-some billion years ago

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to wherever it was that the first speck of

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life appeared on Earth.

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Maybe on the warm surface of a bubble.

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That speck did something that's gone on,
uninterrupted ever since.

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It wrote a message. It was a chemical

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message, that it passed to its children

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and passed it on to its children, and

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to its children, and so on.

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The message has passed from the very first

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organism, all the way down through time, 
to you and me.

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Like a continuous thread, through all

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living things.

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It's more elaborate, now, of course, but

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that message is, very simply, is the

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secret of life.

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And here is that message, contained in

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this stunning little constellation of

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chemicals, we call, "DNA".

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You've seen it in this form, the classic

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"Double Helix", but since we're gonna be

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spending a lot of time talking about

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DNA, I wondered what it looks like when

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it's raw, ya know, in real life?

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So, I asked an expert.

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Eric Lander - DNA has a reputation for

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being such a mystical, highfalutin sort of

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molecule. All this information, your

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future, your heredity, it's actually goop.

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See, this here is DNA.

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(Narrator) Professor Eric Lander is a

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geneticist at MIT's Whitehead Institute.

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(Eric) It's very very long strands of

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molecules. These double helices of DNA, 
which, when you get them all

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together, just look like little threads
of cotton.

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(Narrator) And these strands were

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literally pulled from cells. Blood
cells, maybe skin cells, of a human being.

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Eric - Whoever contributed this DNA,

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you can tell from this whether or not they

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might be at early risk for Alzheimer's

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disease. You can tell if they might be at

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early risk for breast cancer.

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And there's probably about 2,000 other

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things you can tell, that we don't know

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how to tell yet, but we'll be able

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to tell. And it's, really, incredibly
unlikely that you could tell

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all that from this.

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But, that's DNA for you.

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That, apparently, is the secret of life,

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just hanging off there on the tube.

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(Narrator) And already, DNA has told

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us things that no one, no one had
expected.

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It turns out that human beings have only

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twice as many genes as a fruit fly.

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Now how can that be?

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We are such complex and magnificent
creatures, and fruit flies, well, uh,

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they're fruit flies.

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DNA also tells us that we are more closely
related to worms and to yeast than

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most of us would ever have imagined.

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But how do you read what's inside a
molecule?

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Well, if it's DNA, if you turn it so you

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can look at from just the right angle,

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you will see, in the middle, what

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look like steps in a ladder.

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Each step is made up of two chemicals,

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"Cytosine" and "Guanine", or
"Thymine" and "Adenine".

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They come, always, in pairs called,
"Base-Pairs" either C and G, or T and A,

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for short.

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This is, step-by-step, a code.

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Three-billion steps long; the formula for

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a human being.

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We're all familiar with this thing.

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This shape is very familiar.

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(Eric) Double Helix.
(Narrator) Double Helix.

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First of all, I want to... this is my

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version of a DNA molecule.

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Is this, by the way, what it looks like?

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(Eric) Well, ehm, give or take... a
cartoon version of it.

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I mean, a little like that, yeah.

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(Narrator) So there are, in almost every 
cell in your body, if you look deep

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enough, you will find this chain here?

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Eric - Oh, yes, stuck in the nucleus of
your cell.

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Narrator - Now how small is this?

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In a real DNA molecule, the distance

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between the two walls is how wide?

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Eric - Oh, golly.

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(Narrator) Look at this, he's asking for
help.

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(laughing)

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Eric -This distance is about 
10 Angstroms.

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(Narrator) That's one-billionth of a meter

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when it's clumped up in a very particular
way.

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Eric - Well, no, it's curled up sort of
like that, but, it's more than that.

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You can't curl it up too much, bc
these little negative charge things

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will repel each other. So, you fold it on
itself.

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I'm gonna break your molecule..

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Narrator - Yeah, don't break my molecule.

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Eric - Ya know, ya got this
and then it's folded up like this

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and then those are folded up on top

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of each other. And, so, in fact, if you

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were to stretch out all of the DNA, it

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would run, oh I don't know, thousands

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and thousands of feet.

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Narrator - Okay.

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The main thing about this, is

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the ladder, the steps of this ladder.

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Narrator - If I knew it was "A" and "T"
and "C" and "C" and "G" and "G" and "A"...

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Eric - Oh, no, it's not "'G' and 'G', it's
'G' and 'C'. It's the grammar...

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Narrator - If I could read each of the

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individual ladders, I might find the

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picture of... what?

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Eric - Of your children.

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This is what you pass to your children.

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Ya know, people have known for 2,000
years that your kids look a lot

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like you. Well, it's because you must pass

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them something... Some instructions that

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give them the eyes they have and hair

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they have, and the nose shape they do.

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The only way you pass it to them is in

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these sentences. That's it.

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(Narrator) And to show you the true power

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of this molecule, we're gonna start with

219
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one atom, deep inside.

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We pull back and see it form its "A"'s and
"T"'s and "C"'s and "G"'s and the

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classic double spiral....

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And then starts the mysterious process

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that creates a healthy new baby.

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♪ (music playing) ♪

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And the interesting thing is that every

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human baby, every baby born, is 99.9%

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identical in it's genetic code to every

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other baby.

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So, the tiniest differences in our genes

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can be hugely important.

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Can contribute to differences in height,

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physique, maybe even talents, aptitudes,

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and it also explain what can break...

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What can make us sick.

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Cracking the code of those minuscule

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differences in DNA, that influence health

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and illness, is what the Human Genome
Project is all about.

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Since 1990, scientists all over the world

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in university and government labs have

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been involved in a massive effort to read

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all three-billion A's, T's, G's, and C's

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of human DNA.

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They predicted it would take, at least

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15 years. That was partly because, in the
early days of the project,

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a scientist could spend years, an entire

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career, trying to readjust a handful of

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letters in the human genome.

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It took 10 years to find the one genetic

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mistake that causes Cystic Fibrosis.

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Another 10 years to find the gene for

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Huntington's Disease.

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15 years to find one of the genes that

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increase the risk for breast cancer.

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One letter at a time, painfully slowly,

255
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frustratingly prone to mistakes, and

256
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false leads.

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We asked Robert Waterston, a pioneer in

258
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mapping DNA, to show us the way it

259
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used to be done.

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(Robert) The original ladders for DNA

261
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sequence, we actually read by putting a

262
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little letter next to the band that we

263
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were calling and then writing those

264
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down on a piece of paper, or into the

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computer after that.

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Uh, it's horrendous.

267
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(Narrator) And we haven't mentioned the

268
00:13:48,798 --> 00:13:52,798
hardest part. This part here, magnified
50 thousand times, is an actual

269
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clump of DNA Chromosome -17.

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If you look inside, you find, of course,

271
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hundred of millions of A's, and C's, and
T's, and G's, but it turns out

272
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that only about 1% of them are active

273
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and important. These are the genes

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that scientists are searching for.

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So, somewhere in this dense chemical

276
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forest, are genes involved in deafness,

277
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Alzheimer's, cancer, cataracts, but where?

278
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This is such a maze, scientists need a
map.

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But at the old pace, that would take close

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to forever.

281
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And then came the revolution.

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In the last 10 years the entire process

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has been computerized, that costed

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hundreds of millions of dollars.

285
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But now, instead of decoding only a few

286
00:14:46,986 --> 00:14:50,326
hundred letters by hand in a day...

287
00:14:50,430 --> 00:14:54,430
together, these machines can do 1,000
every second.

288
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And that has made all the difference.

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(Man) This is something that is gonna

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go in the textbooks. Everybody knows
that.

291
00:15:02,951 --> 00:15:04,941
Everybody, when the Genome Project was

292
00:15:04,941 --> 00:15:08,741
being born, was consciously aware of their

293
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role in history.

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(Narrator) Getting the letters out is, has
been described as, finding the

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blueprint of a human being, finding

296
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the manual for a human being,

297
00:15:20,721 --> 00:15:24,111
finding the code of a human being.

298
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What's your metaphor?

299
00:15:25,631 --> 00:15:28,731
Eric - Oh, golly gee. I mean, you can have

300
00:15:28,731 --> 00:15:30,731
very highfalutin metaphors for this kind

301
00:15:30,731 --> 00:15:33,301
of stuff. This is basically a parts list.

302
00:15:33,301 --> 00:15:35,261
Blueprints and all these fancy names...

303
00:15:35,261 --> 00:15:36,671
it's just a parts list.

304
00:15:36,671 --> 00:15:39,551
It's just a parts list with a lot of
parts.

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00:15:39,551 --> 00:15:42,121
If you take an airplane, a Boeing 777,

306
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I think it has like a hundred-thousand

307
00:15:44,031 --> 00:15:46,231
parts. If I gave you a parts list for the

308
00:15:46,231 --> 00:15:48,951
Boeing 777, in one sense you'd know a

309
00:15:48,951 --> 00:15:50,591
lot. You'd know a hundred-thousand

310
00:15:50,591 --> 00:15:52,311
components that have gotta be there.

311
00:15:52,311 --> 00:15:54,171
Screws and wires and rudders and things

312
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like that. On the other hand, I bet you

313
00:15:56,731 --> 00:15:58,681
wouldn't know how to put it together and

314
00:15:58,681 --> 00:16:00,601
I bet you wouldn't know why it flies.

315
00:16:00,601 --> 00:16:02,441
Well, we're in the same boat... We now

316
00:16:02,441 --> 00:16:05,601
have a parts list. That's what The Human 
Genome Project is about.

317
00:16:05,601 --> 00:16:07,241
It's about getting the parts list.

318
00:16:07,241 --> 00:16:09,001
If you want to understand the plane,

319
00:16:09,001 --> 00:16:10,781
you have to have the parts list, but

320
00:16:10,781 --> 00:16:12,501
that's not enough to understand why

321
00:16:12,501 --> 00:16:14,431
it flies. But, of course, you'd be crazy

322
00:16:14,431 --> 00:16:16,071
not to start with the parts list.

323
00:16:16,071 --> 00:16:19,291
And one reason it’s so important 
to understand all those parts is

324
00:16:19,291 --> 00:16:22,391
to decode every letter of the genome,

325
00:16:22,391 --> 00:16:28,341
Is because sometimes out of 3 billion base
pairs in our DNA, just one single letter

326
00:16:28,341 --> 00:16:32,341
can make a difference.

327
00:16:36,069 --> 00:16:40,069
Alice and Tim Lord are parents of 
two-year-old Hayden,

328
00:16:40,569 --> 00:16:44,569
Alice – good morning
Tim – hey pumpkin

329
00:16:47,558 --> 00:16:51,558
(Tim) – the two things that I think of the 
most about Hayden, which a lot of people .

330
00:16:51,558 --> 00:16:56,748
got from him right from the beginning
was that he was always very funny

331
00:16:58,423 --> 00:17:02,423
Alice - Make your very very very serious 
face. I love you

332
00:17:02,555 --> 00:17:08,245
(Tim) – he loved to smile and laugh, 
he used to guffaw this was later when he

333
00:17:08,245 --> 00:17:13,045
was a year old he just found the funniest 
things hilarious he and I would just crack


334
00:17:13,045 --> 00:17:17,815
each other up.

335
00:17:20,055 --> 00:17:24,775
(Narrator) Hayden seemed to be developing 
normally but Allison began to notice

336
00:17:24,775 --> 00:17:31,505
that some things were not quite right. 
Allison – I was very anxious all the time

337
00:17:31,505 --> 00:17:37,045
with Hayden. I was certain things were 
not the same. I would see friends

338
00:17:37,045 --> 00:17:39,765
changing the diaper of their child 
that was around the same age

339
00:17:39,765 --> 00:17:43,765
and see the physical movement 
and the legs movement and

340
00:17:43,765 --> 00:17:47,125
Hayden didn’t do that


341
00:17:47,125 --> 00:17:50,495
♪ (Singing “Happy Birthday”) ♪

342
00:17:50,495 --> 00:17:54,395
Narrator – Doctors told them that Hayden 
was just developing a bit slowly, but

343
00:17:54,395 --> 00:17:58,235
by the time he turned a year old, it was
clear that something serious was wrong.

344
00:18:02,725 --> 00:18:06,725
he never crawled, he never talked, 
never ate with his fingers,

345
00:18:06,725 --> 00:18:10,725
and he seemed to be going backwards, not 
progressing.

346
00:18:10,833 --> 00:18:14,833
(Tim) – I remember the last time he laughed.

347
00:18:14,833 --> 00:18:18,833
I took a trip with him out to buy a suit 
to a wedding that night

348
00:18:18,833 --> 00:18:23,533
and we came back and it was really windy,
he just loves to fill the wind,

349
00:18:23,533 --> 00:18:29,663
so we had a great time. We came back and 
I brought them up on the couch and sat

350
00:18:29,663 --> 00:18:33,983
next to him and he just kind of threw his
head back and laughed.

351
00:18:33,983 --> 00:18:36,453
Like, oh, what a fun trip! Ya, know...

352
00:18:36,453 --> 00:18:43,303
It was the last time he was able to 
laugh, it’s really hard.


353
00:18:56,286 --> 00:18:59,746
(Narrator) – it turned out that Hayden 
had Tay-Sachs disease. A genetic

354
00:18:59,746 --> 00:19:03,306
condition that slowly destroys 
a baby’s brain

355
00:19:05,330 --> 00:19:09,330
(Kolodny) – What happens is a baby appears 
normal at birth,

356
00:19:09,330 --> 00:19:15,880
and over the course of the first year, 
begins to miss developmental milestones.

357
00:19:17,588 --> 00:19:19,628
So at six months a child should be turning


358
00:19:19,628 --> 00:19:26,388
over but is unable to sit up, to stand, to
walk, to talk.

359
00:19:28,344 --> 00:19:33,244
(Narrator) – Tay-Sachs disease begins at
one infinitesimal spot on the DNA ladder

360
00:19:33,244 --> 00:19:38,344
if just one letter goes wrong, say this
cluster of atoms is a picture of that

361
00:19:38,344 --> 00:19:43,164
letter. A mistake here can come 
down to just four atoms, that’s it.

362
00:19:44,203 --> 00:19:49,313
But since genes create proteins, 
that error creates a problem

363
00:19:49,313 --> 00:19:54,073
in this protein, which is supposed to 
dissolve fat in the brain. And now

364
00:19:54,073 --> 00:19:58,613
the protein doesn’t work, so fat 
builds up, swells the brain, and

365
00:19:58,613 --> 00:20:05,363
destroys critical brain cells. And 
all of this is the result of one

366
00:20:05,363 --> 00:20:08,343
bad letter in that baby’s DNA.

367
00:20:10,141 --> 00:20:14,141
Kolodny – in most cases it’s a single 
base change as we say, a letter

368
00:20:14,141 --> 00:20:17,321
difference.

369
00:20:17,321 --> 00:20:22,021
(Narrator) – One defective letter out 
of 3 billion. And no way to fix it.

370
00:20:22,021 --> 00:20:28,921
Tay-Sachs is a relentlessly progressive 
disease. In the years since his 


371
00:20:28,921 --> 00:20:36,591
diagnosis Hayden has gone blind, can’t 
eat solid food, it’s harder for him to

372
00:20:36,591 --> 00:20:42,991
swallow, he can’t move on his own, 
and he has seizures as many as 10

373
00:20:42,991 --> 00:20:45,081
times a day.

374
00:20:45,081 --> 00:20:48,541
Kolodny – for children with classical 
Tay-Sachs disease, there is only one

375
00:20:48,541 --> 00:20:58,731
outcome. Children die by age 5 to 7. 
Sometimes even before age 5.


376
00:21:00,401 --> 00:21:05,121
(Narrator) – as it happens, Tim has an 
identical twin brother. When Hayden

377
00:21:05,121 --> 00:21:09,121
was diagnosed, that brother, Charlie 
went to New York to be with him.

378
00:21:11,822 --> 00:21:17,682
Charlie’s wife Blythe had had been 
Allison’s roommate in college and

379
00:21:17,682 --> 00:21:21,682
her best friend.

380
00:21:21,682 --> 00:21:26,802
Blythe – Charlie called me on the phone 
and told me to Hayden had Tay-Sachs 


381
00:21:26,802 --> 00:21:32,126
and explained I went to the computer and 
looked it up and then just couldn’t

382
00:21:32,126 --> 00:21:37,016
believe what I read.
(Blythe and Taylor talking)

383
00:21:37,840 --> 00:21:41,470
(Narrator) – Blythe and Charlie had a 
three-year-old daughter Taylor and a

384
00:21:41,470 --> 00:21:45,470
baby girl named Cameron. Cameron 
was happy and healthy except for one

385
00:21:45,470 --> 00:21:50,610
small thing.
Blythe – on the NTSAD website it talks

386
00:21:50,610 --> 00:21:54,230
about that typically between six and 
eight months is when the signs start

387
00:21:54,230 --> 00:21:58,710
coming. But one of the early signs is 
that they startle easily and Hayden

388
00:21:58,710 --> 00:22:04,350
had always had a heavy startle 
response. We noticed that Cameron

389
00:22:04,350 --> 00:22:12,320
had a comparable startle response. 
Not as severe, but absolutely not

390
00:22:12,320 --> 00:22:15,660
like Taylor had had.
(Narrator) – as soon as she saw

391
00:22:15,660 --> 00:22:20,180
that early warning sign on the Tay-Sachs
website, Blythe went to get herself and

392
00:22:20,180 --> 00:22:24,530
Cameron tested.
(Charlie) – it was another week until we

393
00:22:24,530 --> 00:22:28,670
got the final results on Cameron’s 
bloodwork. And then the Tuesday before

394
00:22:28,670 --> 00:22:33,270
Thanksgiving, we went into our 
pediatrician’s office we had the results

395
00:22:33,270 --> 00:22:39,410
that Blythe was a carrier and Cameron 
had Tay-Sachs


396
00:22:39,410 --> 00:22:50,710
Blythe – all I said was “I’m sorry.”
(Narrator) – Tay-Sachs is a very rare

397
00:22:50,710 --> 00:22:55,900
disease that usually occurs in specific 
groups, like Ashkenazi Jews, but even

398
00:22:55,900 --> 00:23:01,860
then the baby must inherit the gene 
from both parents. So even though

399
00:23:01,860 --> 00:23:06,080
there is a Tay-Sachs test, the Lords had 
no reason to think they would be a risk.


400
00:23:10,810 --> 00:23:19,270
And yet incredibly all four of them, Tim 
and Charlie and both their wives, were

401
00:23:19,270 --> 00:23:25,120
carriers. That was an unbelievably bad 
role of the genetic dice.

402
00:23:26,906 --> 00:23:35,186
Tim – Charlie and I are incredibly close 
and have been all our lives. And when I

403
00:23:35,186 --> 00:23:40,026
think about him and Blythe having to go
through this it seems really cruel

404
00:23:43,556 --> 00:23:50,866
Charlie – I had already geared myself up 
to be my brother’s rock. And I couldn’t

405
00:23:50,866 --> 00:24:00,806
imagine having to help him and go 
through it myself <i>voice breaks</i>

406
00:24:04,553 --> 00:24:09,563
(Narrator) – for families like the Lords 
and for everybody, the Human Genome

407
00:24:09,563 --> 00:24:13,823
Project offers the chance to find out 
early if we’re at risk for all kinds of

408
00:24:13,823 --> 00:24:21,293
diseases.
Tim Lord - I would like to see a really

409
00:24:21,293 --> 00:24:28,373
aggressive push to develop a test for 
hundreds of genetic diseases, so that

410
00:24:28,373 --> 00:24:32,133
parents could be 
informed before they start to have

411
00:24:32,133 --> 00:24:42,003
children as to the dangers that faced 
them. I think it’s within our grasp, now

412
00:24:42,003 --> 00:24:45,744
that we’ve mapped the human genenome, 
the information is there for people to

413
00:24:45,744 --> 00:24:55,814
begin to sort through
Tim – (talking to Hayden), “all right

414
00:24:55,814 --> 00:25:00,234
pumpkin”
(Tim) – they are horrible horrible

415
00:25:00,234 --> 00:25:05,194
diseases. If there is any way you could
be tested for a whole host of them and 


416
00:25:05,194 --> 00:25:08,724
not have them
affect the child, I think it’s something 


417
00:25:08,724 --> 00:25:12,724
that we have to focus on


418
00:25:19,823 --> 00:25:25,863
(Narrator) – Hayden Lord died a few months
before his third birthday.

419
00:25:28,241 --> 00:25:30,201
Narrator - what makes this story

420
00:25:30,201 --> 00:25:32,441
especially hard to bear is we now know

421
00:25:32,441 --> 00:25:34,691
that a loss that huge, and it was a

422
00:25:34,691 --> 00:25:37,071
catastrophe by any measure, started

423
00:25:37,071 --> 00:25:41,071
with a single error, a few atoms across,

424
00:25:41,071 --> 00:25:44,341
buried inside a cell. Now, if something

425
00:25:44,341 --> 00:25:47,431
so small could trigger such an enormous

426
00:25:47,431 --> 00:25:49,621
result, is a perspective that is

427
00:25:49,621 --> 00:25:51,921
incredibly frightening.

428
00:25:51,921 --> 00:25:53,891
Except, that now geneticists have figured

429
00:25:53,891 --> 00:25:56,111
out how to see many of these tiny errors

430
00:25:56,111 --> 00:25:59,151
before they become catastrophes.

431
00:25:59,151 --> 00:26:00,931
When you think about that, that's an

432
00:26:00,931 --> 00:26:03,601
extraordinary thing, to spot a catastrophe

433
00:26:03,601 --> 00:26:07,001
when it's still an insignificant dot in a
cell.

434
00:26:07,001 --> 00:26:10,011
Which is the promise of the Human Genome
Project.

435
00:26:10,011 --> 00:26:12,571
It is first and foremost, an early warning

436
00:26:12,571 --> 00:26:14,981
system for a host of diseases, which

437
00:26:14,981 --> 00:26:18,981
will give, hopefully, parents, doctors,
and scientists an advantage

438
00:26:18,981 --> 00:26:21,481
that we have never had before. When you

439
00:26:21,481 --> 00:26:23,961
can see trouble coming way way before

440
00:26:23,961 --> 00:26:25,911
it starts you have a chance to stop it

441
00:26:25,911 --> 00:26:29,561
or treat it... eventually, you might cure
it.

442
00:26:30,636 --> 00:26:32,576
(Narrator) And that's why, when Congress

443
00:26:32,576 --> 00:26:35,886
created the Human Genome Project in
1990, the challenge was

444
00:26:35,886 --> 00:26:41,886
to get a complete list of our A's, T's,
C's, and G's as quickly as possible.

445
00:26:41,886 --> 00:26:44,096
So, the business of making tests,

446
00:26:44,096 --> 00:26:47,766
medicines, and cures could begin.

447
00:26:47,766 --> 00:26:50,716
They figured it would take about 15 years

448
00:26:50,716 --> 00:26:52,956
to decode a human being, and at the time,

449
00:26:52,956 --> 00:26:55,516
that seemed reasonable.

450
00:26:55,516 --> 00:26:58,216
Until this man: scientist, entrepreneur,

451
00:26:58,216 --> 00:27:00,756
and speed-boat enthusiast, Craig Venter,

452
00:27:00,756 --> 00:27:05,036
decided that he could do it faster, much
faster.

453
00:27:05,036 --> 00:27:07,146
(Craig) It's like sailing. Once you have

454
00:27:07,146 --> 00:27:09,496
two sailboats on the water going

455
00:27:09,496 --> 00:27:11,326
approximately the same direction,

456
00:27:11,326 --> 00:27:13,456
they're racing. And science works very

457
00:27:13,456 --> 00:27:17,136
much the same way. If you have two labs

458
00:27:17,136 --> 00:27:19,676
Craig - remotely working on the same
thing,

459
00:27:19,676 --> 00:27:23,906
one tries to get there faster, better, or

460
00:27:23,906 --> 00:27:28,636
higher quality... something different,
in part, because our society

461
00:27:28,636 --> 00:27:31,556
recognizes only "First Place".

462
00:27:32,065 --> 00:27:34,105
(Narrator) Back in 1990, Vinter was one

463
00:27:34,105 --> 00:27:37,785
of many government scientists
painstakingly decoding

464
00:27:37,785 --> 00:27:40,755
proteins and genes, his focus was one

465
00:27:40,755 --> 00:27:42,735
protein in the brain.

466
00:27:42,735 --> 00:27:46,155
Vinter - I took 10 years to get the
protein, and it took a whole year

467
00:27:46,155 --> 00:27:48,415
to get 1,000 letters of genetic code.

468
00:27:48,415 --> 00:27:50,875
(Narrator) For Venter, that was way too
slow.

469
00:27:50,875 --> 00:27:53,585
Narrator - So, you're sitting there
thinking there must be

470
00:27:53,585 --> 00:27:55,385
a better way when you were gazing out

471
00:27:55,385 --> 00:27:56,115
the window.

472
00:27:56,115 --> 00:27:58,065
Vinter - There HAD to be a better way.

473
00:27:58,065 --> 00:28:00,095
(Narrator) And that's when he learned that

474
00:28:00,095 --> 00:28:03,565
someone had invented a new machine
that could identify C's and T's and A's

475
00:28:03,565 --> 00:28:05,265
and G's with remarkable speed.

476
00:28:05,265 --> 00:28:08,775
And Craig Venter just loves machines that

477
00:28:08,775 --> 00:28:10,085
go fast.

478
00:28:10,085 --> 00:28:11,835
Vinter - I immediately contacted the

479
00:28:11,835 --> 00:28:14,635
company to see if I could get one of the
first machines.

480
00:28:15,369 --> 00:28:17,209
(Narrator) - And here's how they work:

481
00:28:17,209 --> 00:28:20,029
Human DNA is chopped by robots into tiny

482
00:28:20,029 --> 00:28:23,179
pieces. These pieces are copied over and

483
00:28:23,179 --> 00:28:25,809
over again in bacteria and then tagged

484
00:28:25,809 --> 00:28:29,809
with colored dyes.

485
00:28:30,481 --> 00:28:33,611
A laser bounces light off of each snip of

486
00:28:33,611 --> 00:28:36,991
DNA and the colors that it sees represent

487
00:28:36,991 --> 00:28:40,081
individual letters in the genetic code.

488
00:28:40,081 --> 00:28:43,011
And these computers can do this 24 hours

489
00:28:43,011 --> 00:28:46,281
a day, everyday.

490
00:28:46,281 --> 00:28:49,311
Venter - See, now you can see clearly the
peaks.

491
00:28:49,311 --> 00:28:51,201
So, there's just a blue on coming up so

492
00:28:51,201 --> 00:28:53,391
that's a "C" coming up. You could read

493
00:28:53,391 --> 00:28:55,841
this and you could write this all down.

494
00:28:55,841 --> 00:28:59,391
(Narrator) So, blue, yellow, red, red,
yellow...

495
00:28:59,391 --> 00:29:02,841
Venter - So, that's C, G, T, T, A.

496
00:29:02,841 --> 00:29:04,771
(Narrator) And, somehow all these little

497
00:29:04,771 --> 00:29:10,181
pieces have to be put together again in
the right order. Venter's dream was to

498
00:29:10,181 --> 00:29:12,491
have hundreds of new machines at his

499
00:29:12,491 --> 00:29:15,221
fingertips, so he quit is government job

500
00:29:15,221 --> 00:29:16,741
and formed a company he called,

501
00:29:16,741 --> 00:29:19,591
"Celera Genomics". "Celera", from the

502
00:29:19,591 --> 00:29:22,751
Latin word, "Celerity", meaning, "Speed".

503
00:29:22,751 --> 00:29:25,791
And this is what he built.

504
00:29:25,791 --> 00:29:29,191
Narrator - Oh my Lord. And you know what's

505
00:29:29,191 --> 00:29:31,271
interesting is there's almost nobody here.

506
00:29:31,271 --> 00:29:34,821
Vinter - Yeah. It's all automated.

507
00:29:34,821 --> 00:29:36,981
(Narrator) So, who is this guy and why's

508
00:29:36,981 --> 00:29:40,171
he such a bulldog for speed?

509
00:29:40,171 --> 00:29:43,121
Craig Venter grew up in California,

510
00:29:43,121 --> 00:29:44,981
left high school and spent a year as a

511
00:29:44,981 --> 00:29:47,641
surfing bum on the beach by day and

512
00:29:47,641 --> 00:29:50,821
a stock-boy at Sears by night. He was

513
00:29:50,821 --> 00:29:53,411
inevitably drafted, went to Vietnam with

514
00:29:53,411 --> 00:29:55,551
the Navy. That's him way over there on

515
00:29:55,551 --> 00:29:57,841
the left. He was eventually assigned to a

516
00:29:57,841 --> 00:29:59,851
Naval Hospital in Denang during the

517
00:29:59,851 --> 00:30:01,681
Tet Offensive, when the Americans were

518
00:30:01,681 --> 00:30:03,881
taking very heavy casualties.

519
00:30:03,881 --> 00:30:06,211
At 21, he was in the triage unit, where

520
00:30:06,211 --> 00:30:10,221
they decide who will live, and who will
die.

521
00:30:10,221 --> 00:30:11,451
When you're young and you

522
00:30:11,451 --> 00:30:13,341
Narrator - see a lot of people die, and

523
00:30:13,341 --> 00:30:15,481
they could all be you, do feel like you

524
00:30:15,481 --> 00:30:19,711
sort of owe them cures, cures that they'll

525
00:30:19,711 --> 00:30:22,521
never get? Or am I over-romanticizing...

526
00:30:22,521 --> 00:30:24,431
Vinter - Well, the motivation's become

527
00:30:24,431 --> 00:30:28,471
complex, but that's certainly apart of it.

528
00:30:28,471 --> 00:30:32,571
Also, I think surviving the year there
was...

529
00:30:32,571 --> 00:30:36,571
(emotional pause)

530
00:30:43,677 --> 00:30:46,357
So, it puts things in perspective that

531
00:30:46,357 --> 00:30:49,177
I think, if you're not in that situation,

532
00:30:49,177 --> 00:30:53,177
you could never truly have that
perspective.

533
00:30:53,177 --> 00:30:56,257
Narrator - So, you hear ticking?

534
00:30:56,257 --> 00:31:00,257
Vinter - Yeah... but also, I feel, that

535
00:31:00,257 --> 00:31:02,487
I've had this tremendous gift for all

536
00:31:02,487 --> 00:31:05,427
these years since I got back in 1968, and

537
00:31:05,427 --> 00:31:07,237
I wanted to make sure I did something

538
00:31:07,237 --> 00:31:10,067
with it.

539
00:31:10,768 --> 00:31:12,698
(Narrator) In the spring of 1998, Venter

540
00:31:12,698 --> 00:31:14,778
announced that he and his company were
gonna

541
00:31:14,778 --> 00:31:16,928
sequence all three billion letters of the

542
00:31:16,928 --> 00:31:19,768
human genome in two years.

543
00:31:19,768 --> 00:31:21,328
Remember, the government said it

544
00:31:21,328 --> 00:31:23,278
was gonna take 15.

545
00:31:23,278 --> 00:31:25,278
(Venter) There was a lot of arrogance

546
00:31:25,278 --> 00:31:27,628
that went with that program

547
00:31:27,628 --> 00:31:29,528
Vinter - they were gonna do it at their

548
00:31:29,528 --> 00:31:32,978
pace, and a lot of the scientists, ya
know, if they were really

549
00:31:32,978 --> 00:31:35,008
being honest with you, would tell you that

550
00:31:35,008 --> 00:31:37,408
they planned to retire doing this program.

551
00:31:37,408 --> 00:31:39,718
You know, that's not what we think is the

552
00:31:39,718 --> 00:31:41,738
right way to do science, especially

553
00:31:41,738 --> 00:31:44,318
science that affects so many peoples'
lives.

554
00:31:44,318 --> 00:31:47,498
Robert - Craig's a high-testosterone male.

555
00:31:47,498 --> 00:31:50,818
Who has, who loves to be an iconoclast,
right?

556
00:31:50,818 --> 00:31:54,098
He loves rattling peoples' cages. And he's

557
00:31:54,098 --> 00:31:57,238
done that consistently in the genome
project.

558
00:31:57,948 --> 00:32:00,018
(Narrator) Craig Venter's announcement

559
00:32:00,018 --> 00:32:01,478
that his team would finish the

560
00:32:01,478 --> 00:32:04,998
entire genome in just two years,
galvanized everybody working

561
00:32:04,998 --> 00:32:08,238
on the public project. Now, they were

562
00:32:08,238 --> 00:32:10,368
scrambling to keep up.

563
00:32:10,368 --> 00:32:11,968
Man - There are some limitations,

564
00:32:11,968 --> 00:32:15,308
we don't think we can this thing to go
any faster at the moment without

565
00:32:15,308 --> 00:32:18,658
throwing a lot more robotics at it.
The arm physically takes 20 seconds

566
00:32:18,658 --> 00:32:19,378
to move...

567
00:32:19,378 --> 00:32:22,628
(Narrator) Francis Collins, the head of
the Human Genome Project, was

568
00:32:22,628 --> 00:32:26,178
determined that Celera was not gonna
beat his teams to the prize. He made a

569
00:32:26,178 --> 00:32:30,988
dramatic decision to try to cut five full
years off of the original plan.

570
00:32:30,988 --> 00:32:33,048
Eric - The okay way to do it...

571
00:32:33,048 --> 00:32:37,918
(Francis) When the major genome
centers met, and agreed to go for broke

572
00:32:37,918 --> 00:32:40,688
here, I don't think there was anybody in

573
00:32:40,688 --> 00:32:42,678
the room that was very confident we could

574
00:32:42,678 --> 00:32:44,608
do that. I mean, you could sit down with

575
00:32:44,608 --> 00:32:46,508
a piece of paper, and make projections,

576
00:32:46,508 --> 00:32:48,528
if everything went really well, that might

577
00:32:48,528 --> 00:32:51,398
get you there, but there were so many ways

578
00:32:51,398 --> 00:32:55,398
this could have just run completely
off the track.

579
00:32:55,398 --> 00:32:57,368
(Narrator) At MIT, they decided to try to

580
00:32:57,368 --> 00:33:00,458
scale up their effort 15-fold.

581
00:33:00,458 --> 00:33:02,298
And that meant a major change in their

582
00:33:02,298 --> 00:33:04,468
usual academic pace.

583
00:33:04,468 --> 00:33:06,248
(Woman) We basically had a goal since

584
00:33:06,248 --> 00:33:09,868
Woman - march to get to a plate emitted
operation from womb-to-tomb all the

585
00:33:09,868 --> 00:33:10,748
way through.

586
00:33:10,748 --> 00:33:14,428
(Narrator) In the fall of 1999,
representatives from the five

587
00:33:14,428 --> 00:33:18,058
major labs come to check out Eric
Lander's operation.

588
00:33:18,058 --> 00:33:21,468
All the big honchos in the Human
Genome Project are here.

589
00:33:21,468 --> 00:33:23,328
Scientists from Washington University

590
00:33:23,328 --> 00:33:26,338
in St. Louis, Baylor College of Medicine

591
00:33:26,338 --> 00:33:29,218
in Texas, the Department of Energy,

592
00:33:29,218 --> 00:33:32,078
she's from the Sanger Center in England.

593
00:33:32,078 --> 00:33:34,118
If they want to finish the genome before

594
00:33:34,118 --> 00:33:36,298
Craig Venter, these folks have to figure

595
00:33:36,298 --> 00:33:38,478
out how to outfit their labs with a lot of

596
00:33:38,478 --> 00:33:41,728
new, and fancy, and unfamiliar equipment,

597
00:33:41,728 --> 00:33:44,718
and they've got to do it fast.

598
00:33:44,718 --> 00:33:46,608
Woman - So, we'll have to run some kind

599
00:33:46,608 --> 00:33:47,908
of a conduit...

600
00:33:47,908 --> 00:33:50,227
(Narrator) At MIT, a different crate is

601
00:33:50,227 --> 00:33:52,067
arriving almost daily.

602
00:33:52,067 --> 00:33:54,897
Man - It's like Christmas, everyone 
unwrap something.

603
00:33:54,897 --> 00:33:56,627
(Narrator) Just like a bad Christmas

604
00:33:56,627 --> 00:33:59,197
present, assembly is required, and the

605
00:33:59,197 --> 00:34:04,077
instruction are, of course, not always
clear.

606
00:34:04,077 --> 00:34:06,497
(Man) Oh no, the magnet-plates stick
to each other?

607
00:34:06,497 --> 00:34:09,667
Man - This is about, plus or minus three
feet.

608
00:34:09,667 --> 00:34:10,397
(laughing)

609
00:34:10,397 --> 00:34:14,057
(Eric Landers) Since one's on the cutting-
edge, I guess that they always call

610
00:34:14,057 --> 00:34:16,227
Eric - it the "bleeding edge", right?
Nothing,

611
00:34:16,227 --> 00:34:20,167
really, is working as you would expect.
All the stuff we're doing will be working

612
00:34:20,167 --> 00:34:22,297
perfectly as soon as we're ready to junk
it.

613
00:34:22,297 --> 00:34:25,307
(Man) Right, right.
(Narrator) The MIT crew is particularly

614
00:34:25,307 --> 00:34:27,027
excited about their brand-new,

615
00:34:27,027 --> 00:34:32,647
$300,000, state-of-the-art, DNA purifying
machine.

616
00:34:32,647 --> 00:34:37,717
Man - Alright, maiden voyage, it didn't
ask me for a password, that's good.

617
00:34:39,488 --> 00:34:40,658
On it goes.

618
00:34:40,658 --> 00:34:42,758
Other man - Got the yellow light right
away.

619
00:34:42,758 --> 00:34:45,478
(Man) That's okay...
(Narrator) I don't think the blinking

620
00:34:45,478 --> 00:34:46,598
light is a good sign...

621
00:34:46,598 --> 00:34:49,528
(Man) Looks like we have an air leak
somewhere.

622
00:34:49,528 --> 00:34:52,288
Uh oh, look at this.

623
00:34:52,288 --> 00:34:53,708
(Man) It's cracked.

624
00:34:53,708 --> 00:34:55,708
(Eric Landers) It's sort of like flying a

625
00:34:55,708 --> 00:34:57,668
very large plane and repairing it while

626
00:34:57,668 --> 00:35:00,248
you're flying. And you're trying to figure

627
00:35:00,248 --> 00:35:03,108
out what went wrong.

628
00:35:03,108 --> 00:35:06,028
And you also realize that you're spending

629
00:35:06,028 --> 00:35:08,328
10's of thousands of dollars an hour,

630
00:35:08,328 --> 00:35:10,138
so you feel under a little pressure

631
00:35:10,138 --> 00:35:13,418
to sort of work this out as quickly as
you can.

632
00:35:13,418 --> 00:35:16,248
(Narrator) So, he calls the customer
service line.

633
00:35:16,248 --> 00:35:17,878
And of course, he's put on hold...

634
00:35:17,878 --> 00:35:23,608
(music playing)

635
00:35:24,375 --> 00:35:28,375
So, he waits...

636
00:35:30,226 --> 00:35:34,226
And he waits...

637
00:35:35,835 --> 00:35:39,835
And he waits...

638
00:35:41,394 --> 00:35:44,434
Anyway, it turns out the the $300,000

639
00:35:44,434 --> 00:35:47,144
machine does have one tiny little valve

640
00:35:47,144 --> 00:35:51,504
that is broke, and so it doesn't work.

641
00:35:52,056 --> 00:35:53,706
(Man) Alright...

642
00:35:53,749 --> 00:35:56,319
(Eric) You never know whether the problem

643
00:35:56,319 --> 00:36:02,579
is due to some robot, some funky bit of
biochemistry, some

644
00:36:02,579 --> 00:36:05,349
chemical that you've got that isn't really

645
00:36:05,349 --> 00:36:10,469
working. And, so, it's incredibly
complicated.

646
00:36:10,469 --> 00:36:13,819
Woman - So, we have a transformation,
where we transform a tenth of

647
00:36:13,819 --> 00:36:14,719
our ligation...

648
00:36:14,719 --> 00:36:16,709
Man - And add SDS to lice the phage.

649
00:36:16,709 --> 00:36:19,839
Man - And all of our thermo-cyclers are
three to four well plates.

650
00:36:19,839 --> 00:36:21,819
(Man) So, if you basically determine your

651
00:36:21,819 --> 00:36:24,419
Man - (inaudible scientific jargon ... and

652
00:36:24,419 --> 00:36:27,659
give them each a different run module...

653
00:36:27,659 --> 00:36:31,519
(Francis) Try to ramp something up...
anything that's the slightest bit

654
00:36:31,519 --> 00:36:34,599
cloogey suddenly becomes a major
bottleneck.

655
00:36:34,599 --> 00:36:37,049
Man - We talked about doing a full-out

656
00:36:37,049 --> 00:36:41,299
test today and we weren't quite feeling
good about doing that yet, so...

657
00:36:41,299 --> 00:36:43,516
(Francis) There was a considerable sense

658
00:36:43,516 --> 00:36:47,066
of white knuckles, because here we made

659
00:36:47,066 --> 00:36:49,496
this promise, we were on the record here

660
00:36:49,496 --> 00:36:51,156
saying we were gonna do this.

661
00:36:51,156 --> 00:36:53,156
And things weren't working, the machines

662
00:36:53,156 --> 00:36:56,746
were breaking down.

663
00:36:56,746 --> 00:36:58,856
Woman - This is like... November?

664
00:36:58,856 --> 00:37:01,726
Francis - And it's gotta work now. The
time is running out.

665
00:37:01,726 --> 00:37:05,966
Man - This is one of it's three inaugural 
runs and

666
00:37:05,966 --> 00:37:08,546
(Man) it seems to be flawless, so far.

667
00:37:08,546 --> 00:37:11,276
(Narrator) It took awhile, but the
government teams finally hit

668
00:37:11,276 --> 00:37:14,106
their stride.

669
00:37:14,368 --> 00:37:16,398
(Francis) But the fall of that year was

670
00:37:16,398 --> 00:37:19,658
really, sort of, the determining time.

671
00:37:19,658 --> 00:37:22,238
The Center's really proved their mettle.

672
00:37:22,238 --> 00:37:24,338
And every one of them began to catch

673
00:37:24,338 --> 00:37:28,648
this rising curve, and ride it and we
began to see data

674
00:37:28,648 --> 00:37:32,208
appearing at prodigious rates.

675
00:37:32,885 --> 00:37:33,925
Man - Do all...

676
00:37:34,176 --> 00:37:36,576
(Francis) By early 2000's, a thousand

677
00:37:36,576 --> 00:37:39,226
base pairs-per-second were rolling out of

678
00:37:39,226 --> 00:37:43,226
this combined enterprise, seven days a
week, 24 hours a day,

679
00:37:43,226 --> 00:37:45,316
1,000 base pairs a second.

680
00:37:45,316 --> 00:37:48,756
Then it really starts to go.

681
00:37:48,756 --> 00:37:51,366
(Narrator) And those thousands of base
pairs poured out of

682
00:37:51,366 --> 00:37:55,366
university labs directly onto the
internet.

683
00:37:55,366 --> 00:38:02,646
(music playing)

684
00:38:03,134 --> 00:38:04,994
(Narrator) Updated every night, it's

685
00:38:04,994 --> 00:38:07,484
available for anyone, and everybody.

686
00:38:07,484 --> 00:38:11,484
Including, by the way, the competition.

687
00:38:11,646 --> 00:38:13,186
Man - Customers love our data...

688
00:38:13,186 --> 00:38:15,136
(Narrator) Celera admits they got lots of

689
00:38:15,136 --> 00:38:17,446
data directly from the government.

690
00:38:17,446 --> 00:38:19,366
And Tony White, who runs the company

691
00:38:19,366 --> 00:38:21,926
that owns Celera says, "Why not?"

692
00:38:21,926 --> 00:38:23,776
Tony - That's publicly available data.

693
00:38:23,776 --> 00:38:25,986
I'm a taxpayer, Celera's a taxpayer.

694
00:38:25,986 --> 00:38:28,696
Ya know, why should we be excluded from

695
00:38:28,696 --> 00:38:31,746
getting it? I mean, again, are they
creating it

696
00:38:31,746 --> 00:38:35,186
to give to all mankind except Celera?

697
00:38:35,186 --> 00:38:38,076
Is that the idea, it isn't about us

698
00:38:38,076 --> 00:38:40,986
getting the data, it's about this
academic jealousy.

699
00:38:40,986 --> 00:38:43,396
It's about the fact that our data, in

700
00:38:43,396 --> 00:38:45,656
combination with theirs, give us a

701
00:38:45,656 --> 00:38:48,426
perceived unfair advantage over this

702
00:38:48,426 --> 00:38:49,896
so-called race.

703
00:38:49,896 --> 00:38:53,796
Eric - If they wanna race us, that's
their business.

704
00:38:53,796 --> 00:38:55,226
I suppose they may.

705
00:38:55,226 --> 00:38:57,276
(Narrator) I suspect strongly that they
may.

706
00:38:57,276 --> 00:39:02,896
Eric - Our job to get that data so that
everybody can go use it.

707
00:39:02,896 --> 00:39:04,916
(Narrator) Since Celera was sequencing the

708
00:39:04,916 --> 00:39:07,046
genome with private money, some critics

709
00:39:07,046 --> 00:39:09,146
wondered why should the government put

710
00:39:09,146 --> 00:39:14,236
so much cash into the exact same research?

711
00:39:14,769 --> 00:39:18,199
(Eric) In the United States, we invested
in a National Highway system

712
00:39:18,199 --> 00:39:21,619
in the 1950's. We got tremendous return

713
00:39:21,619 --> 00:39:24,549
from building roads for free, and letting

714
00:39:24,549 --> 00:39:26,319
everybody drive up and down them for

715
00:39:26,319 --> 00:39:28,429
whatever purpose they wanted. We're

716
00:39:28,429 --> 00:39:31,469
building a road up and down the
chromosomes... for free.

717
00:39:31,469 --> 00:39:33,319
People can drive up and down those

718
00:39:33,319 --> 00:39:35,179
chromosomes from whatever they need

719
00:39:35,179 --> 00:39:37,179
to. They can make discoveries, they can

720
00:39:37,179 --> 00:39:38,929
learn about medicine, they can learn

721
00:39:38,929 --> 00:39:40,729
about history, whatever they want.

722
00:39:40,729 --> 00:39:43,079
It is worth the public investment to

723
00:39:43,079 --> 00:39:45,059
make those roads available.

724
00:39:45,059 --> 00:39:46,929
(Narrator) Wait a second, what I really

725
00:39:46,929 --> 00:39:49,429
want to know is if you're making a roadmap

726
00:39:49,429 --> 00:39:52,549
of a human being, which human beings are

727
00:39:52,549 --> 00:39:55,869
we mapping? I mean humans come in so many

728
00:39:55,869 --> 00:39:59,019
varieties, so whose genes, exactly, are

729
00:39:59,019 --> 00:40:00,609
we looking at?

730
00:40:00,609 --> 00:40:03,499
Eric - Yeah, it's mostly a guy from
Buffalo and a woman from

731
00:40:03,499 --> 00:40:05,439
Buffalo. That's because the laboratory--

732
00:40:05,439 --> 00:40:08,089
Narrator - Whoa, whoa, wait... An 
anonymous couple from

733
00:40:08,089 --> 00:40:08,819
Buffalo?

734
00:40:08,819 --> 00:40:10,729
Eric - No, they're not a couple. They've

735
00:40:10,729 --> 00:40:12,229
never met. The laboratory was a

736
00:40:12,229 --> 00:40:14,199
laboratory in Buffalo. So, they put an ad

737
00:40:14,199 --> 00:40:16,069
in the Buffalo newspapers, and they got

738
00:40:16,069 --> 00:40:17,769
random volunteers from Buffalo.

739
00:40:17,769 --> 00:40:20,399
They got about 20 of them, and chose

740
00:40:20,399 --> 00:40:22,509
at random the sample, and that sample,

741
00:40:22,509 --> 00:40:25,089
and that sample, so nobody knows who

742
00:40:25,089 --> 00:40:26,299
they are.

743
00:40:26,663 --> 00:40:28,243
(Narrator) And what about Celera?

744
00:40:28,243 --> 00:40:30,723
Whose DNA are they mapping?

745
00:40:30,723 --> 00:40:32,793
They also got a bunch of volunteers,

746
00:40:32,793 --> 00:40:36,793
around 20, and picked five lucky winners

747
00:40:36,793 --> 00:40:38,713
Craig - We tried to have some diversity,

748
00:40:38,713 --> 00:40:41,463
in terms of, if we had an African American

749
00:40:41,463 --> 00:40:43,523
or somebody's self-proclaimed Chinese

750
00:40:43,523 --> 00:40:47,523
history, two Caucasians, and a Hispanic.

751
00:40:47,523 --> 00:40:49,953
So, some of the volunteers were here

752
00:40:49,953 --> 00:40:50,823
on the staff...

753
00:40:50,823 --> 00:40:52,783
Narrator - I have to ask, cause everybody

754
00:40:52,783 --> 00:40:54,023
does, are you one of them?

755
00:40:54,023 --> 00:40:56,883
Craig - I am one of the volunteers, yes.

756
00:40:56,883 --> 00:40:59,213
Narrator - Do you know whether or 
not you're one

757
00:40:59,213 --> 00:40:59,953
of the winners?

758
00:40:59,953 --> 00:41:03,803
I have a pretty good idea, yes, but I

759
00:41:03,803 --> 00:41:07,493
can't disclose that, because it doesn't

760
00:41:07,493 --> 00:41:08,323
matter.

761
00:41:08,323 --> 00:41:10,143
Narrator - Well, if you're the head of

762
00:41:10,143 --> 00:41:13,493
the company and you're watching the
decoding of muah. That has a little

763
00:41:13,493 --> 00:41:14,683
Miss Piggy quality to it.

764
00:41:14,683 --> 00:41:16,573
Craig - Well, any scientist that I know

765
00:41:16,573 --> 00:41:18,353
would love to be looking at their own

766
00:41:18,353 --> 00:41:20,243
genetic code. I mean, how could you not

767
00:41:20,243 --> 00:41:21,943
want to in this field?

768
00:41:21,943 --> 00:41:23,763
(Narrator) Well, I don't know, I don't

769
00:41:23,763 --> 00:41:27,553
work in this field. But I do wonder, can

770
00:41:27,553 --> 00:41:30,123
any small group, and could that guy

771
00:41:30,123 --> 00:41:33,393
from Buffalo, could he really be a
stand-in

772
00:41:33,393 --> 00:41:37,023
for all humankind?

773
00:41:37,583 --> 00:41:39,463
Hasn't it been drummed into us since

774
00:41:39,463 --> 00:41:42,233
birth that we're all... different? Each

775
00:41:42,233 --> 00:41:46,233
and every one of us, completely unique.

776
00:41:47,700 --> 00:41:51,180
We certainly look different.

777
00:41:51,180 --> 00:41:53,480
People come in so many shapes, and

778
00:41:53,480 --> 00:41:59,120
colors, and sizes... The DNA of these

779
00:41:59,120 --> 00:42:01,570
humans has got to be significantly

780
00:42:01,570 --> 00:42:05,770
different than the DNA of this human.
Right?

781
00:42:06,573 --> 00:42:08,583
Eric - The genetic difference between any

782
00:42:08,583 --> 00:42:11,643
two people is 1/10th of a percent.

783
00:42:11,643 --> 00:42:14,333
Those two, and any people on this planet,

784
00:42:14,333 --> 00:42:18,333
are 99.9% identical at the DNA level.

785
00:42:18,566 --> 00:42:20,736
It's only one letter in a thousand
difference.

786
00:42:21,900 --> 00:42:24,840
Narrator - And if I were to bring,

787
00:42:24,840 --> 00:42:28,650
secretly into another room, a black man,

788
00:42:28,650 --> 00:42:31,960
an Asian man, and a white man, and

789
00:42:31,960 --> 00:42:35,080
show you only their genetic code,

790
00:42:35,080 --> 00:42:37,100
could you tell which one was the white
one?

791
00:42:37,100 --> 00:42:38,200
Eric - I could not.

792
00:42:38,200 --> 00:42:40,470
What's going on? Well, it tells us that,

793
00:42:40,470 --> 00:42:45,030
first, as a species, we are very very

794
00:42:45,030 --> 00:42:47,020
closely related. Cause any two human

795
00:42:47,020 --> 00:42:49,360
beings being 99.9% identical, means that

796
00:42:49,360 --> 00:42:51,140
we are much more closely related than

797
00:42:51,140 --> 00:42:53,070
any two chimpanzees in Africa.

798
00:42:53,070 --> 00:42:55,100
(Narrator) Wait, wait, you mean if two

799
00:42:55,100 --> 00:42:56,880
chimpanzees are swinging through the

800
00:42:56,880 --> 00:42:58,710
forest, and you look at the genes of

801
00:42:58,710 --> 00:43:00,350
chimp A, and you look at the genes

802
00:43:00,350 --> 00:43:01,090
of chimp B...

803
00:43:01,090 --> 00:43:02,970
Eric - Average difference between those

804
00:43:02,970 --> 00:43:05,240
chimps, is 4 - 5 times more than the

805
00:43:05,240 --> 00:43:07,540
average between two humans that you

806
00:43:07,540 --> 00:43:08,990
could pluck off this planet.

807
00:43:08,990 --> 00:43:11,160
(Narrator) Because we're such a young
species?

808
00:43:11,160 --> 00:43:12,430
(Eric) That's right.

809
00:43:12,430 --> 00:43:15,300
See, the thing is, we are the descendants

810
00:43:15,300 --> 00:43:19,660
of a very small founding population.

811
00:43:20,509 --> 00:43:22,519
Every human on this planet goes back

812
00:43:22,519 --> 00:43:24,899
to a founding population of, perhaps,

813
00:43:24,899 --> 00:43:27,519
10 or 20 thousand people in Africa.

814
00:43:27,519 --> 00:43:31,429
About 100,000 years ago.

815
00:43:31,429 --> 00:43:33,659
That little population didn't have a great

816
00:43:33,659 --> 00:43:36,399
deal of genetic variation, and what

817
00:43:36,399 --> 00:43:39,079
happened was, it was successful; it

818
00:43:39,079 --> 00:43:41,409
multiplied all over the world, but in that

819
00:43:41,409 --> 00:43:44,099
time, relatively little new genetic

820
00:43:44,099 --> 00:43:47,019
variation is built up. So, we have today

821
00:43:47,019 --> 00:43:49,369
on our planet, about the same genetic

822
00:43:49,369 --> 00:43:51,369
variation that we walked out of Africa

823
00:43:51,369 --> 00:43:52,579
with.

824
00:43:56,861 --> 00:43:58,841
(Narrator) So, people are incredibly

825
00:43:58,841 --> 00:44:01,541
similar to each other. But not only that,

826
00:44:01,541 --> 00:44:03,791
it turns out that we also share many

827
00:44:03,791 --> 00:44:06,951
genes with, well, everything.

828
00:44:07,374 --> 00:44:10,754
50% of the genes of a banana are different
from us?

829
00:44:10,754 --> 00:44:12,814
Eric - How different are you from a
banana?

830
00:44:12,814 --> 00:44:14,824
Narrator - I feel, and I feel like can say

831
00:44:14,824 --> 00:44:16,754
this with some authority, very different

832
00:44:16,754 --> 00:44:17,494
from a banana.

833
00:44:17,494 --> 00:44:20,784
Eric - You may feel different from -
Narrator - I eat a banana but I-

834
00:44:20,784 --> 00:44:22,664
Eric - Look, you've got cells, you've

835
00:44:22,664 --> 00:44:25,164
gotta make those cells divide. So, all

836
00:44:25,164 --> 00:44:27,504
the machinery for replicating your DNA,

837
00:44:27,504 --> 00:44:29,864
all the machinery for controlling the

838
00:44:29,864 --> 00:44:33,064
cell-cycle, the cell's surface, for making

839
00:44:33,064 --> 00:44:35,824
nutrients, all that's the same in you and

840
00:44:35,824 --> 00:44:39,824
a banana.

841
00:44:40,706 --> 00:44:43,866
(Eric) Deep down, the fundamental
mechanisms of

842
00:44:43,866 --> 00:44:47,866
life were worked out only once on this
planet.

843
00:44:52,364 --> 00:44:56,364
And they've gotten reused in every 
organism.

844
00:44:57,865 --> 00:44:59,755
The closer and closer you get to a

845
00:44:59,755 --> 00:45:02,535
cell, the more you see a bag with

846
00:45:02,535 --> 00:45:04,635
stuff in it and a nucleus and most of

847
00:45:04,635 --> 00:45:08,165
those basic functions are the same.

848
00:45:10,630 --> 00:45:12,960
Evolution doesn't go reinvent something

849
00:45:12,960 --> 00:45:14,620
when it doesn't have to.

850
00:45:14,620 --> 00:45:21,050
(music playing)

851
00:45:23,592 --> 00:45:27,892
Take baker's yeast, baker's yeast, we're

852
00:45:27,892 --> 00:45:30,112
related to one-and-a-half billion years

853
00:45:30,112 --> 00:45:32,202
ago. But even even after one-and-a-half

854
00:45:32,202 --> 00:45:34,332
billion years of evolutionary separation,

855
00:45:34,332 --> 00:45:36,342
the parts are still interchangeable for

856
00:45:36,342 --> 00:45:37,682
lots of these genes.

857
00:45:37,682 --> 00:45:40,182
Narrator - Now, does that mean,
I want to understand,

858
00:45:40,182 --> 00:45:41,952
does that mean when you look through

859
00:45:41,952 --> 00:45:43,942
those things, that all the C's, A's, T's,

860
00:45:43,942 --> 00:45:46,202
T's, and the G's, are you seeing the same

861
00:45:46,202 --> 00:45:47,952
exact same letter sequences in the

862
00:45:47,952 --> 00:45:50,162
exact same alignment? When you look at

863
00:45:50,162 --> 00:45:52,092
the yeast and you look at the person, is

864
00:45:52,092 --> 00:45:52,822
it the same?

865
00:45:52,822 --> 00:45:54,692
Eric - Sometimes it's eerie. The gene

866
00:45:54,692 --> 00:45:57,152
sequence is nearly identical. There are

867
00:45:57,152 --> 00:46:01,152
some genes, like Ubiquitin, that's 97%

868
00:46:01,152 --> 00:46:03,572
identical between humans and yeast,

869
00:46:03,572 --> 00:46:05,712
even after a billion years of evolution.

870
00:46:05,712 --> 00:46:08,382
Narrator - Well, with a name like that,|
it's gotta be...

871
00:46:08,382 --> 00:46:09,932
Eric - Well, yeah, but you gotta

872
00:46:09,932 --> 00:46:11,692
understand that deep down we are very

873
00:46:11,692 --> 00:46:14,092
much partaking of that same bag of tricks

874
00:46:14,092 --> 00:46:15,902
that evolution's been using to make

875
00:46:15,902 --> 00:46:18,922
organisms all over this planet.

876
00:46:21,321 --> 00:46:23,261
(Narrator) It seems incredible, but all

877
00:46:23,261 --> 00:46:25,531
this information about evolution, about

878
00:46:25,531 --> 00:46:27,661
our relationship to each other, and to all

879
00:46:27,661 --> 00:46:30,601
living things, it's all right here in this

880
00:46:30,601 --> 00:46:36,081
monotonous stream of letters. And as the

881
00:46:36,081 --> 00:46:38,281
Human Genome Project progressed, and

882
00:46:38,281 --> 00:46:40,681
hit high gear, the pace of discovery

883
00:46:40,681 --> 00:46:42,721
quickened.

884
00:46:43,590 --> 00:46:45,770
Once, they got fully automated, it wasn't

885
00:46:45,770 --> 00:46:48,210
long until Lander, and Collins, and all

886
00:46:48,210 --> 00:46:50,550
the other public project teams had reason

887
00:46:50,550 --> 00:46:53,200
to celebrate.

888
00:46:56,237 --> 00:46:57,877
Francis - I'm Francis Collins, the

889
00:46:57,877 --> 00:46:59,647
Director of the National Human Genome

890
00:46:59,647 --> 00:47:01,687
Research Institute, and we are happy to be

891
00:47:01,687 --> 00:47:04,837
here together to have a party today.

892
00:47:04,837 --> 00:47:07,157
(Narrator) By November of 1999, they had

893
00:47:07,157 --> 00:47:11,157
reached a major milestone. In a five-way

894
00:47:11,157 --> 00:47:13,157
award ceremony, hooked up by

895
00:47:13,157 --> 00:47:15,607
satellite, the major university teams

896
00:47:15,607 --> 00:47:17,467
announced they had finished a billion

897
00:47:17,467 --> 00:47:20,337
base pairs of DNA. A third of the total

898
00:47:20,337 --> 00:47:22,477
genome.

899
00:47:22,939 --> 00:47:26,939
(corks popping)

900
00:47:28,867 --> 00:47:32,867
(Eric) Have we got everybody?

901
00:47:33,961 --> 00:47:37,041
Eric Lander - I would like to propose

902
00:47:37,041 --> 00:47:43,521
a toast. A billion base pairs, all on the

903
00:47:43,521 --> 00:47:45,951
public internet, available to anybody in

904
00:47:45,951 --> 00:47:49,431
the world. It's an incredible achievement.

905
00:47:49,431 --> 00:47:53,071
It hasn't been completely painless.
(laughing)

906
00:47:53,071 --> 00:47:54,901
And, because, I know everybody in this

907
00:47:54,901 --> 00:47:58,901
room is living and breathing and thinking

908
00:47:58,901 --> 00:48:01,431
every single moment of the day about how

909
00:48:01,431 --> 00:48:03,831
to make all this happen... how we can hit

910
00:48:03,831 --> 00:48:06,591
full-scale. I want to be sure you realize

911
00:48:06,591 --> 00:48:09,151
what a remarkable thing we pulled off.

912
00:48:09,151 --> 00:48:13,711
I hope you also know that this is history.

913
00:48:15,491 --> 00:48:18,912
Whatever else you do in your lives, you're

914
00:48:18,912 --> 00:48:22,222
apart of history. We're apart of an

915
00:48:22,222 --> 00:48:24,472
amazing effort on the part of the world to

916
00:48:24,472 --> 00:48:26,352
produce. And it isn't gonna be like the

917
00:48:26,352 --> 00:48:28,472
moon, where we just visit occasionally.

918
00:48:28,472 --> 00:48:30,232
This is gonna be something that every

919
00:48:30,232 --> 00:48:33,912
student, every doctor uses, everyday in

920
00:48:33,912 --> 00:48:35,792
the next century, and the century after

921
00:48:35,792 --> 00:48:39,792
that. It's something to tell your kids

922
00:48:39,792 --> 00:48:41,512
about. Something to tell your

923
00:48:41,512 --> 00:48:43,622
grand-kids about. It's something you

924
00:48:43,622 --> 00:48:46,182
should all be tremendously proud of.

925
00:48:46,182 --> 00:48:48,722
I'm tremendously proud of you.

926
00:48:48,722 --> 00:48:51,883
A toast, to this remarkable group.

927
00:48:51,883 --> 00:48:54,943
To the work we've done. To the work ahead.

928
00:48:54,943 --> 00:48:56,112
Hear, hear.

929
00:48:56,112 --> 00:48:57,272
Everyone - Hear, hear.

930
00:48:57,272 --> 00:48:59,032
(Whistling)

931
00:48:59,032 --> 00:49:00,952
(Narrator) Everybody here is hoping the

932
00:49:00,952 --> 00:49:03,982
genome project will help cure disease.

933
00:49:03,982 --> 00:49:05,952
And the sooner it's done, the better for

934
00:49:05,952 --> 00:49:06,882
all of us.

935
00:49:06,882 --> 00:49:09,560
(inaudible)

936
00:49:09,560 --> 00:49:11,580
(Narrator) But there's something more than

937
00:49:11,580 --> 00:49:14,360
idealism, more than even pride that's

938
00:49:14,360 --> 00:49:18,360
driving this race to finish the genome.

939
00:49:18,360 --> 00:49:20,280
And that's the knowledge that with every

940
00:49:20,280 --> 00:49:22,680
day that passes, more and more pieces

941
00:49:22,680 --> 00:49:24,620
of our genome are being turned into

942
00:49:24,620 --> 00:49:30,100
private property by way of the U.S. Patent
Office.

943
00:49:32,456 --> 00:49:34,026
(printing machine noises)

944
00:49:34,026 --> 00:49:37,746
Woman - I said property.

945
00:49:37,746 --> 00:49:39,736
(Narrrator) The office is inundated with

946
00:49:39,736 --> 00:49:42,196
requests for patents for every imaginable

947
00:49:42,196 --> 00:49:45,016
invention. From Star Wars action figures

948
00:49:45,016 --> 00:49:48,736
to jet engines.

949
00:49:48,736 --> 00:49:51,706
(paper shuffling sounds)

950
00:49:51,706 --> 00:49:54,526
And here, along with all those gizmos, are

951
00:49:54,526 --> 00:49:58,866
requests for patents for human genes.

952
00:49:58,866 --> 00:50:00,986
Things that exist naturally in every one

953
00:50:00,986 --> 00:50:04,986
of us. How is this possible?

954
00:50:06,099 --> 00:50:09,339
(Todd) We regard genes as a patent-able

955
00:50:09,339 --> 00:50:11,499
subject matter, as we regard almost any

956
00:50:11,499 --> 00:50:15,139
chemical. We have issued patents on a

957
00:50:15,139 --> 00:50:17,899
number of compounds and compositions

958
00:50:17,899 --> 00:50:19,539
that are found in the human body.

959
00:50:19,539 --> 00:50:24,639
For example, the gene that encodes insulin

960
00:50:24,639 --> 00:50:27,319
has been patented, and that now has been

961
00:50:27,319 --> 00:50:29,219
used to make almost all of the insulin

962
00:50:29,219 --> 00:50:31,219
that is made. So, people's lives are being

963
00:50:31,219 --> 00:50:33,179
saved today. Diabetics' lives are better.

964
00:50:33,179 --> 00:50:37,139
As a matter of fact, if we ruled out every
chemical that's found in the human body

965
00:50:37,139 --> 00:50:41,139
there'd be an awful lot of inventions that
would not be able to be protected.

966
00:50:41,139 --> 00:50:42,889
(Narrator) Generally, to patent an

967
00:50:42,889 --> 00:50:44,749
invention you've got to prove that it's

968
00:50:44,749 --> 00:50:47,349
new and useful. But a few years ago

969
00:50:47,349 --> 00:50:49,079
critics said that the patent office

970
00:50:49,079 --> 00:50:50,989
wasn't being tough enough, so applicants

971
00:50:50,989 --> 00:50:52,729
would say, "Well, here's a brand new

972
00:50:52,729 --> 00:50:54,639
sequence of A's, C's, T's, and G's right

973
00:50:54,639 --> 00:50:57,069
out of our machine's. That's new."

974
00:50:57,069 --> 00:50:59,149
Now, "useful", wonder what they're gonna

975
00:50:59,149 --> 00:51:01,249
be used for? Well, they were kind of vague

976
00:51:01,249 --> 00:51:03,919
about use, says Eric Lander.

977
00:51:03,919 --> 00:51:05,879
Eric - The sort of thing that people used

978
00:51:05,879 --> 00:51:07,919
to do then was they would say that, "It

979
00:51:07,919 --> 00:51:11,919
could be used as a probe to detect
itself."

980
00:51:11,919 --> 00:51:13,689
It's a trivial use. I mean it's like

981
00:51:13,689 --> 00:51:16,919
saying, "I could use this new protein as

982
00:51:16,919 --> 00:51:19,579
packing peanuts to stuff in a box."

983
00:51:19,579 --> 00:51:22,179
I mean, it's true-
Narrator - Well, wouldn't the patent

984
00:51:22,179 --> 00:51:26,079
examiner say, "Well, that's not useful."
Eric - No, no, no, you see, you the patent

985
00:51:26,079 --> 00:51:29,819
guidelines are very unclear. I don't
object to giving someone that limited time

986
00:51:29,819 --> 00:51:33,339
of monopoly when they've really invented
a cure for a disease; some really

987
00:51:33,339 --> 00:51:35,979
important therapy.
I do object to giving a monopoly when

988
00:51:35,979 --> 00:51:37,819
somebody has simply described a couple

989
00:51:37,819 --> 00:51:39,889
hundred letters of a gene, but has no idea

990
00:51:39,889 --> 00:51:41,699
what use it could have in medicine...

991
00:51:41,699 --> 00:51:45,459
cause what's happen is you've given away
that precious monopoly to someone who's

992
00:51:45,459 --> 00:51:49,149
done just a little bit of work, and then
the people who come along and want to

993
00:51:49,149 --> 00:51:52,749
do a lot of work to turn it into a
therapy, well... they've gotta go pay the

994
00:51:52,749 --> 00:51:56,749
person who already owns it. I think it's
a bad deal for society.

995
00:51:58,766 --> 00:52:00,946
(Narrator) It takes at least two years for

996
00:52:00,946 --> 00:52:03,316
the patent office to process a single

997
00:52:03,316 --> 00:52:05,576
application. So, right now, the patent

998
00:52:05,576 --> 00:52:08,876
office says there are about 20,000 genetic

999
00:52:08,876 --> 00:52:11,596
patents waiting for approval. All of them

1000
00:52:11,596 --> 00:52:14,536
are in limbo. This can cause problems for

1001
00:52:14,536 --> 00:52:16,466
drug companies who are trying to work

1002
00:52:16,466 --> 00:52:20,466
with genes to cure disease.

1003
00:52:20,466 --> 00:52:22,266
Narrator - I'm a company trying to do

1004
00:52:22,266 --> 00:52:24,186
work on this, this, and this rung of the

1005
00:52:24,186 --> 00:52:25,096
ladder.
Eric - Right

1006
00:52:25,096 --> 00:52:27,046
Narrator - Cause I think that I can maybe

1007
00:52:27,046 --> 00:52:29,486
develop a cure for cancer, 
right here, for the sake

1008
00:52:29,486 --> 00:52:31,266
of arguing. But, of course, I have to

1009
00:52:31,266 --> 00:52:33,026
worry that somebody owns this space.

1010
00:52:33,026 --> 00:52:34,986
Eric - Oh, you have to worry a lot, that

1011
00:52:34,986 --> 00:52:38,756
this region here that you're working on
that might cure cancer, has already been

1012
00:52:38,756 --> 00:52:43,176
patented by somebody else. And that
patent filing is not public, and so you're

1013
00:52:43,176 --> 00:52:45,336
living with the shadow that all of your

1014
00:52:45,336 --> 00:52:47,056
work may go for naught.

1015
00:52:47,056 --> 00:52:48,786
Narrator - Because one day the phone

1016
00:52:48,786 --> 00:52:51,936
rings and says, "Sorry, you can't work
here. Get off my territory."

1017
00:52:51,936 --> 00:52:54,886
Eric - That's right.
Narrator - Or, you can work here, but I'm

1018
00:52:54,913 --> 00:52:58,443
gonna charge you $100,000 a week.
Or, you can work here and I'll charge you

1019
00:52:58,443 --> 00:53:00,783
a nickel, but I want 50% of whatever you
discover.

1020
00:53:00,783 --> 00:53:04,743
Eric - And the problem there is, it's even
worse, because many companies don't start

1021
00:53:04,743 --> 00:53:07,103
the work whenever there's a cloud over

1022
00:53:07,103 --> 00:53:09,703
who owns that. If there's uncertainty,

1023
00:53:09,703 --> 00:53:11,393
companies would rather be working

1024
00:53:11,393 --> 00:53:13,553
some place where they don't have 
uncertainty.

1025
00:53:13,553 --> 00:53:15,573
And, therefore, I think, work doesn't get

1026
00:53:15,573 --> 00:53:17,483
done, because of the confusion over who

1027
00:53:17,483 --> 00:53:18,293
owns stuff.

1028
00:53:19,668 --> 00:53:21,708
(Narrator) Supporters of patents say they

1029
00:53:21,708 --> 00:53:25,848
are a crucial incentive for drug 
companies.

1030
00:53:26,514 --> 00:53:29,374
Drug research is phenomenally expensive

1031
00:53:29,374 --> 00:53:31,404
but if a company can monopolize a big

1032
00:53:31,404 --> 00:53:33,344
discovery with a patent, it can make

1033
00:53:33,344 --> 00:53:37,344
hundreds of millions of dollars.

1034
00:53:38,733 --> 00:53:40,823
Research scientists suddenly find

1035
00:53:40,823 --> 00:53:43,183
themselves in an unfamiliar world, ruled

1036
00:53:43,183 --> 00:53:46,643
by big money.

1037
00:53:46,643 --> 00:53:48,883
(Sheldon) Every scientist that does
is research

1038
00:53:48,883 --> 00:53:52,363
now being looked upon as a generator of

1039
00:53:52,363 --> 00:53:54,983
wealth. Even if that person is not

1040
00:53:54,983 --> 00:53:57,753
interested in it. If they sequence some

1041
00:53:57,753 --> 00:54:01,273
DNA, that could be patent-able material.

1042
00:54:01,273 --> 00:54:05,153
So, whether the scientist likes it or not,

1043
00:54:05,153 --> 00:54:07,313
he or she becomes an entrepreneur just

1044
00:54:07,313 --> 00:54:11,313
by virtue of doing science.

1045
00:54:12,160 --> 00:54:14,310
(Narrator) Craig Venter is first a
scientist

1046
00:54:14,310 --> 00:54:16,620
but he has made the leap from academia

1047
00:54:16,620 --> 00:54:19,540
into the business world.

1048
00:54:19,540 --> 00:54:21,520
Narrator - Let me talk about the business

1049
00:54:21,520 --> 00:54:23,290
of this. Do you consider yourself a

1050
00:54:23,290 --> 00:54:24,250
business man?

1051
00:54:24,250 --> 00:54:26,330
Craig - No, in fact, I still, sort of

1052
00:54:26,330 --> 00:54:28,440
bristle at the term for some reason.

1053
00:54:28,440 --> 00:54:31,080
But my philosophy is, we would not get
medical

1054
00:54:31,080 --> 00:54:34,070
breakthroughs in this country, at all, if

1055
00:54:34,070 --> 00:54:36,510
it wasn't done in a business setting.

1056
00:54:36,510 --> 00:54:38,530
We would not have new therapies if we

1057
00:54:38,530 --> 00:54:40,950
didn't have a biotech and pharmaceutical

1058
00:54:40,950 --> 00:54:42,490
industry.

1059
00:54:42,490 --> 00:54:44,520
Narrator - But are they... if you bristle

1060
00:54:44,520 --> 00:54:46,440
at the word "businessman", that might be

1061
00:54:46,440 --> 00:54:48,540
because in some part of your soul, you may

1062
00:54:48,540 --> 00:54:51,170
think that the business of science and the

1063
00:54:51,170 --> 00:54:53,290
business of business are fundamentally

1064
00:54:53,290 --> 00:54:55,380
incompatible for one simple reason:

1065
00:54:55,380 --> 00:54:58,210
that the business has to sell something

1066
00:54:58,210 --> 00:55:00,920
and the science has to learn, or teach,

1067
00:55:00,920 --> 00:55:01,800
something.

1068
00:55:01,800 --> 00:55:03,680
Craig - I think I bristle at it because

1069
00:55:03,680 --> 00:55:05,580
it's used as an attack. It's used as a

1070
00:55:05,580 --> 00:55:09,580
criticism. In this case, if the science is

1071
00:55:09,580 --> 00:55:13,580
not spectacular, if the medicine is not

1072
00:55:13,580 --> 00:55:17,580
spectacular, there will be no profits.

1073
00:55:18,293 --> 00:55:21,383
(Narrator) Venter was given $300,000,000

1074
00:55:21,383 --> 00:55:23,803
to set up Celera, and his investors are

1075
00:55:23,803 --> 00:55:26,971
expecting something in return.

1076
00:55:26,971 --> 00:55:30,391
But how can they profit from the genome?

1077
00:55:30,391 --> 00:55:32,551
At the moment, the company is banking on

1078
00:55:32,551 --> 00:55:36,551
pure computer power.

1079
00:55:39,096 --> 00:55:42,526
This is Celera's master control.

1080
00:55:42,526 --> 00:55:45,126
24 hours a day, technicians monitor all

1081
00:55:45,126 --> 00:55:47,756
the company's major operations, including

1082
00:55:47,756 --> 00:55:49,496
the hundreds of sequencers that are

1083
00:55:49,496 --> 00:55:53,496
constantly decoding our genes.

1084
00:55:54,642 --> 00:55:56,922
And they oversee Celera's main source of

1085
00:55:56,922 --> 00:56:00,682
income: a massive website, where, for a

1086
00:56:00,682 --> 00:56:03,012
fee, you can explore several genomes,

1087
00:56:03,012 --> 00:56:05,652
including those of fruit flies, mice, and,

1088
00:56:05,652 --> 00:56:08,812
of course, humans. What all this

1089
00:56:08,812 --> 00:56:10,532
adds up to is something like a big

1090
00:56:10,532 --> 00:56:12,832
browser. A user-friendly interface between

1091
00:56:12,832 --> 00:56:15,902
you and your genes.

1092
00:56:15,902 --> 00:56:18,512
Tony White - Our business is to sell

1093
00:56:18,512 --> 00:56:20,672
products that enable research. That's

1094
00:56:20,672 --> 00:56:24,352
essentially what we do. So, we're used to

1095
00:56:24,352 --> 00:56:26,352
selling the picks and the shovels to the

1096
00:56:26,352 --> 00:56:29,912
miners. Tools to interpret the human

1097
00:56:29,912 --> 00:56:32,492
genome and other related species.

1098
00:56:32,492 --> 00:56:34,942
Or, merely more products along the

1099
00:56:34,942 --> 00:56:37,502
same genre, they just happen to be less

1100
00:56:37,502 --> 00:56:40,872
tangible than a machine.

1101
00:56:40,872 --> 00:56:42,792
(Narrator) So, Celera's business plan is

1102
00:56:42,792 --> 00:56:44,652
to gather information from all kinds of

1103
00:56:44,652 --> 00:56:46,682
creatures, put it together, and sell their

1104
00:56:46,682 --> 00:56:48,122
findings to drug companies, or

1105
00:56:48,122 --> 00:56:51,362
universities, or whomever. But it's the

1106
00:56:51,362 --> 00:56:53,682
selling part, selling scientific

1107
00:56:53,682 --> 00:56:55,962
information, that makes some scientists

1108
00:56:55,962 --> 00:56:58,162
very uncomfortable.

1109
00:56:58,162 --> 00:57:00,142
Todd - This is a big change in the ethos

1110
00:57:00,142 --> 00:57:02,702
of the scientific community, which is,

1111
00:57:02,702 --> 00:57:06,532
supposedly, it was built upon the idea of

1112
00:57:06,532 --> 00:57:10,332
community values of the free and open

1113
00:57:10,332 --> 00:57:13,192
exchange of information. The fundamental

1114
00:57:13,192 --> 00:57:15,702
idea that when you learn something, you

1115
00:57:15,702 --> 00:57:18,162
publish it immediately, you share it with

1116
00:57:18,162 --> 00:57:21,792
others. Science grows by this community

1117
00:57:21,792 --> 00:57:24,232
interest of shared knowledge.

1118
00:57:24,232 --> 00:57:26,492
Tony - I think, why doesn't Pfeiffer give

1119
00:57:26,492 --> 00:57:28,412
away their drugs? They could help a lot

1120
00:57:28,412 --> 00:57:30,412
more people if they didn't charge for
them.

1121
00:57:30,412 --> 00:57:33,392
Man - At what point is "free" really free?

1122
00:57:33,392 --> 00:57:35,332
(Narrator) Tony White has absolutely no

1123
00:57:35,332 --> 00:57:38,072
problem with making money from the human
genome.

1124
00:57:38,072 --> 00:57:40,072
Tony - I hope we have a legal monopoly on

1125
00:57:40,072 --> 00:57:42,022
the information. I hope the product is so

1126
00:57:42,022 --> 00:57:44,902
good, and so valuable to people, that they

1127
00:57:44,902 --> 00:57:46,932
feel that it's necessary to come through

1128
00:57:46,932 --> 00:57:49,642
us to get it.

1129
00:57:49,642 --> 00:57:51,532
Anybody who wants to can build all the

1130
00:57:51,532 --> 00:57:54,532
tools that we're gonna build. Whether or

1131
00:57:54,532 --> 00:57:56,352
not they will choose to is a different

1132
00:57:56,352 --> 00:57:58,402
matter.

1133
00:57:58,402 --> 00:58:01,982
Narrator - Which is the better business
to be in, do you think? The landlord

1134
00:58:01,982 --> 00:58:05,462
business? Or this, "You subscribe and
I'll give you some information about

1135
00:58:05,462 --> 00:58:06,822
anything you want business."

1136
00:58:06,822 --> 00:58:09,862
Eric - They're both lousy businesses.
(Narrator laughing) Lousy?

1137
00:58:09,862 --> 00:58:11,442
Eric- They're lousy businesses by

1138
00:58:11,442 --> 00:58:13,612
comparison with the real business:
Make drugs.

1139
00:58:13,612 --> 00:58:16,612
Actually make molecules that cure people.

1140
00:58:16,612 --> 00:58:18,382
Narrator - curing people is the whole

1141
00:58:18,382 --> 00:58:20,302
point, right? But if there is one thing

1142
00:58:20,302 --> 00:58:21,902
that the Human Genome Project has

1143
00:58:21,902 --> 00:58:25,222
taught us, is that finding cures is a

1144
00:58:25,222 --> 00:58:27,102
whole lot harder than simply reading

1145
00:58:27,102 --> 00:58:29,522
letters of DNA.

1146
00:58:29,522 --> 00:58:31,442
(Narrator) Take for example, the case of

1147
00:58:31,442 --> 00:58:35,442
little Riley Demoush.

1148
00:58:35,668 --> 00:58:39,668
(baby sounds)

1149
00:58:40,561 --> 00:58:42,621
At two months, Riley appears to be

1150
00:58:42,621 --> 00:58:47,071
a perfectly healthy baby boy, but he's
not.

1151
00:58:48,455 --> 00:58:51,135
When Riley was just 13 days old, Kathy

1152
00:58:51,135 --> 00:58:55,135
got the call that every parent dreads.

1153
00:58:56,695 --> 00:58:59,295
Kathy - The pediatrician called on a

1154
00:58:59,295 --> 00:59:03,925
Thursday evening, and he said, "I need

1155
00:59:03,925 --> 00:59:05,775
to talk to you about the baby."

1156
00:59:05,775 --> 00:59:08,855
He said, "Are you sitting down?"

1157
00:59:08,855 --> 00:59:12,685
I'm like, "Yeah." And that really suprised

1158
00:59:12,685 --> 00:59:15,005
me. And he said, "Are you holding the

1159
00:59:15,005 --> 00:59:16,945
baby." Because he didn't want me to drop

1160
00:59:16,945 --> 00:59:18,165
the baby, obviously.

1161
00:59:18,165 --> 00:59:20,885
And he said, "The tests came through, and

1162
00:59:20,885 --> 00:59:24,535
Riley tested positive to cystic fibrosis."

1163
00:59:24,535 --> 00:59:28,305
And I was in shock.

1164
00:59:28,305 --> 00:59:29,985
(Narrator) As Kathy and her husband

1165
00:59:29,985 --> 00:59:32,505
would soon learn, Cystic Fibrosis, "CF"

1166
00:59:32,505 --> 00:59:34,675
for short, attacks several organs of the

1167
00:59:34,675 --> 00:59:38,355
body, but especially the lungs.

1168
00:59:38,355 --> 00:59:40,015
It's victims suffer from chronic

1169
00:59:40,015 --> 00:59:42,805
respiratory infections, and half of all

1170
00:59:42,805 --> 00:59:46,805
CF patients die before the age of 30.

1171
00:59:48,983 --> 00:59:50,983
David Waltz - To think that we can still

1172
00:59:50,983 --> 00:59:53,333
be hopeful that their child will grow up

1173
00:59:53,333 --> 00:59:56,813
to have a normal, healthy, happy, and long

1174
00:59:56,813 --> 01:00:00,333
life. But at the present time, I don't

1175
01:00:00,333 --> 01:00:02,743
have any guarantees about that.

1176
01:00:02,743 --> 01:00:04,583
Kathy - Someone had asked me, "Are you

1177
01:00:04,583 --> 01:00:08,583
prepared to bury your son at such a young

1178
01:00:08,583 --> 01:00:11,583
age, whether it's four or 40?" And he was

1179
01:00:11,583 --> 01:00:13,513
seventeen days old when that happened

1180
01:00:13,513 --> 01:00:15,403
and I said, "I've had him for seventeen

1181
01:00:15,403 --> 01:00:18,763
days, and I wouldn't trade those seventeen
days."

1182
01:00:18,763 --> 01:00:20,523
(Narrator) Finding the genetic defect

1183
01:00:20,523 --> 01:00:24,523
that causes CF was big news back in 1989.

1184
01:00:25,943 --> 01:00:27,783
News woman - Medical researchers say

1185
01:00:27,783 --> 01:00:29,613
they have discovered the gene which is

1186
01:00:29,613 --> 01:00:31,613
responsible for Cystic Fibrosis; the most

1187
01:00:31,613 --> 01:00:34,083
common inherited fatal disease in this
country.

1188
01:00:34,083 --> 01:00:36,043
Robert Dresing - We're going to cure this

1189
01:00:36,043 --> 01:00:36,793
disease...

1190
01:00:36,793 --> 01:00:38,753
(Narrator) A lot of people expected the

1191
01:00:38,753 --> 01:00:42,753
cure to arrive any day... it didn't.

1192
01:00:42,753 --> 01:00:44,663
Francis Collins, now head of the gov's

1193
01:00:44,663 --> 01:00:47,363
Genome Project, led one of the teams that

1194
01:00:47,363 --> 01:00:49,833
discovered the CF gene.

1195
01:00:49,833 --> 01:00:51,653
Francis - We still have not seen this

1196
01:00:51,653 --> 01:00:53,643
disease cured or even particularly

1197
01:00:53,643 --> 01:00:55,333
benefitted by all of this wonderful

1198
01:00:55,333 --> 01:00:57,303
molecular biology. CF is still treated

1199
01:00:57,303 --> 01:00:59,463
pretty much the way it was 10 years ago,

1200
01:00:59,463 --> 01:01:01,703
but that is going to change.

1201
01:01:01,703 --> 01:01:03,463
(Narrator) The original hope was that

1202
01:01:03,463 --> 01:01:05,983
babies like Riley could be cured by gene

1203
01:01:05,983 --> 01:01:08,363
therapy. Medicine that would provide a

1204
01:01:08,363 --> 01:01:11,733
good working copy of a broken gene, but

1205
01:01:11,733 --> 01:01:14,253
attempts at gene therapy have hardly ever

1206
01:01:14,253 --> 01:01:17,493
worked. They remain highly controversial,

1207
01:01:17,493 --> 01:01:19,233
so if there's gonna be an effective

1208
01:01:19,233 --> 01:01:21,513
treatment for Riley, instead of fixing his

1209
01:01:21,513 --> 01:01:24,393
genes, we're gonna take a look -- and this

1210
01:01:24,393 --> 01:01:28,043
is new territory -- at his proteins.

1211
01:01:28,043 --> 01:01:30,123
Narrator - What do proteins do?

1212
01:01:30,123 --> 01:01:32,083
Venter - When you look at yourself in the

1213
01:01:32,083 --> 01:01:34,013
mirror, you don't see DNA, you don't see

1214
01:01:34,013 --> 01:01:37,373
RNA... you see proteins and the result of

1215
01:01:37,373 --> 01:01:40,373
protein-action. That's what we are

1216
01:01:40,373 --> 01:01:41,863
physically composed of.

1217
01:01:41,863 --> 01:01:44,463
Narrator - So it's not a Rodgers and 
Hammerstein thing

1218
01:01:44,463 --> 01:01:46,473
where one guy does the tune and the other

1219
01:01:46,473 --> 01:01:48,433
guy does the lyrics, this is a case where

1220
01:01:48,433 --> 01:01:50,233
the genes create the proteins and the

1221
01:01:50,233 --> 01:01:51,173
proteins create us.

1222
01:01:51,173 --> 01:01:52,703
Craig - That's right, we are the

1223
01:01:52,703 --> 01:01:54,463
accumulation of our proteins and our

1224
01:01:54,463 --> 01:01:56,583
protein activities.

1225
01:01:56,583 --> 01:01:58,583
(Narrator) A protein starts out as a long

1226
01:01:58,583 --> 01:02:01,343
chain of different chemicals, amino acids.

1227
01:02:01,343 --> 01:02:04,323
But, unlike genes, proteins won't work in

1228
01:02:04,323 --> 01:02:07,043
a straight line.

1229
01:02:07,043 --> 01:02:09,963
Francis - Genes are effectively
one-dimensional.

1230
01:02:09,963 --> 01:02:12,643
If you write down the sequence of A,C,G, 
and T,

1231
01:02:12,643 --> 01:02:14,583
that's kinda what you need to know about

1232
01:02:14,583 --> 01:02:17,753
that gene. But proteins are 3-dimensional.

1233
01:02:17,753 --> 01:02:20,153
They have to be, because we're 
3-dimensional and

1234
01:02:20,153 --> 01:02:22,233
we're made of those proteins, otherwise

1235
01:02:22,233 --> 01:02:25,473
we'd all sort of be linear, unimaginably

1236
01:02:25,473 --> 01:02:28,473
weird creatures.

1237
01:02:28,473 --> 01:02:30,423
(Narrator) Here's part of the protein.

1238
01:02:30,423 --> 01:02:33,613
Think of them as tangles of ribbon.

1239
01:02:33,613 --> 01:02:35,383
They come in any number of different

1240
01:02:35,383 --> 01:02:38,043
shapes. They can look like this, or like

1241
01:02:38,043 --> 01:02:43,383
this, or like this. The varieties are

1242
01:02:43,383 --> 01:02:46,983
endless. But, when it's created, every

1243
01:02:46,983 --> 01:02:49,953
protein is told, "Here is your shape."

1244
01:02:49,953 --> 01:02:52,653
and that shape defines what it does,

1245
01:02:52,653 --> 01:02:54,893
tells all the other proteins what it does,

1246
01:02:54,893 --> 01:02:56,813
and that's how they recognize each other

1247
01:02:56,813 --> 01:02:59,813
when they hook up and do business.

1248
01:02:59,813 --> 01:03:03,493
In the protein world, your shape is your

1249
01:03:03,493 --> 01:03:06,253
destiny.

1250
01:03:06,253 --> 01:03:08,783
Francis - They have needs and reasons to

1251
01:03:08,783 --> 01:03:10,503
want to be snuggled up against each

1252
01:03:10,503 --> 01:03:12,813
other in a particular way. And actually,

1253
01:03:12,813 --> 01:03:15,303
a particular amino acid sequence will

1254
01:03:15,303 --> 01:03:17,783
almost always fold in a precise way.

1255
01:03:17,783 --> 01:03:19,643
Narrator - Should I think origami-like?

1256
01:03:19,643 --> 01:03:21,453
When you're stretching, folding, and--

1257
01:03:21,453 --> 01:03:24,343
Francis - It's elegant, very complicated,

1258
01:03:24,343 --> 01:03:27,223
and we still do not have the ability to

1259
01:03:27,223 --> 01:03:29,293
precisely predict how that's going to

1260
01:03:29,293 --> 01:03:31,793
work, but obviously it does work.

1261
01:03:31,793 --> 01:03:33,823
(Narrator) Except, of course, if something

1262
01:03:33,823 --> 01:03:35,703
does go wrong, and that's what happened

1263
01:03:35,703 --> 01:03:38,883
to baby Riley.

1264
01:03:38,883 --> 01:03:42,323
Riley has a tiny error in his DNA, just

1265
01:03:42,323 --> 01:03:44,303
three letters out of three billion are

1266
01:03:44,303 --> 01:03:46,823
missing, but because of that error he has

1267
01:03:46,823 --> 01:03:49,043
a faulty gene, and that faulty gene

1268
01:03:49,043 --> 01:03:52,283
creates a faulty or misshapen protein.

1269
01:03:52,283 --> 01:03:54,623
And just the slightest little changes in

1270
01:03:54,623 --> 01:03:57,543
shape and "Boom" the consequences are

1271
01:03:57,543 --> 01:04:01,183
huge, because it is now misshapen and

1272
01:04:01,183 --> 01:04:03,123
a key protein that is found in the lung

1273
01:04:03,123 --> 01:04:07,123
cells can't do it's job. So, let's take a

1274
01:04:07,123 --> 01:04:09,583
look at some real lung cells, we'll travel

1275
01:04:09,583 --> 01:04:14,463
in. This is the lining, or the membrane

1276
01:04:14,463 --> 01:04:16,463
of a lung cell, and here's how the protein

1277
01:04:16,463 --> 01:04:19,823
is supposed to work. The top of your

1278
01:04:19,823 --> 01:04:21,643
screen is the outside of a cell, the

1279
01:04:21,643 --> 01:04:23,683
bottom the inside of the cell, of course,

1280
01:04:23,683 --> 01:04:26,133
and our healthy protein is providing a,

1281
01:04:26,133 --> 01:04:28,973
kind of chute so that salt can enter and

1282
01:04:28,973 --> 01:04:30,983
leave the cell. Those little green bubbles

1283
01:04:30,983 --> 01:04:34,183
that's salt and. as you see here, the salt

1284
01:04:34,183 --> 01:04:39,093
is getting through. But if the protein is

1285
01:04:39,093 --> 01:04:42,083
not the right shape, then it's not allowed

1286
01:04:42,083 --> 01:04:45,443
into the membrane; it can't do its job.

1287
01:04:45,443 --> 01:04:47,593
And, without that protein, as you see here

1288
01:04:47,593 --> 01:04:50,203
salt gets trapped inside the cell and that

1289
01:04:50,203 --> 01:04:52,563
triggers a whole chain of reactions that

1290
01:04:52,563 --> 01:04:55,293
makes the cell surface sticky and covered

1291
01:04:55,293 --> 01:04:59,293
with thick mucus.

1292
01:05:00,143 --> 01:05:02,063
Woman - The first two positions that are

1293
01:05:02,063 --> 01:05:04,063
done sitting up are probably a little more

1294
01:05:04,063 --> 01:05:04,943
difficult to do...

1295
01:05:04,943 --> 01:05:06,873
(Narrator) The mucus has to be dislodged

1296
01:05:06,873 --> 01:05:09,913
physically. Riley's family is learning to

1297
01:05:09,913 --> 01:05:11,673
loosen the mucus that may develop in

1298
01:05:11,673 --> 01:05:13,553
his lungs and fight infections with

1299
01:05:13,553 --> 01:05:14,833
antibiotics.

1300
01:05:14,833 --> 01:05:16,593
(Woman) You sort of wanna do it with

1301
01:05:16,593 --> 01:05:17,573
a cupped hand.

1302
01:05:17,573 --> 01:05:19,513
(Father) Trying to get at the top of the

1303
01:05:19,513 --> 01:05:21,833
lungs?
Woman - Yep, you wanna be like right here-

1304
01:05:21,833 --> 01:05:25,593
(Narrator) But what the doctors and the
scientists would love to do is, if they

1305
01:05:25,593 --> 01:05:29,683
can't fix baby Riley's genes, then maybe
there's someway to treat Riley's misshapen

1306
01:05:29,683 --> 01:05:33,683
protein and restore the original shape.

1307
01:05:33,683 --> 01:05:35,763
Because if you could just get them shaped

1308
01:05:35,763 --> 01:05:37,813
right, the protein should become instantly

1309
01:05:37,813 --> 01:05:40,173
recognizable to other proteins and get

1310
01:05:40,173 --> 01:05:43,373
back to business.

1311
01:05:43,373 --> 01:05:45,253
But, look at these things. How would we

1312
01:05:45,253 --> 01:05:47,853
ever learn to properly fold wildly

1313
01:05:47,853 --> 01:05:51,093
multi-dimensional proteins? It may

1314
01:05:51,093 --> 01:05:55,093
be doable, but it won't be easy.

1315
01:05:55,093 --> 01:05:56,853
Eric Lander - The Genome Project was

1316
01:05:56,853 --> 01:05:58,693
a piece of cake compared to most other

1317
01:05:58,693 --> 01:06:00,693
things, because genetic information is

1318
01:06:00,693 --> 01:06:03,173
linear. It goes in a simple line up and

1319
01:06:03,173 --> 01:06:05,503
down the chromosome. Once you start

1320
01:06:05,503 --> 01:06:08,003
talking about the 3-dimensional shapes

1321
01:06:08,003 --> 01:06:11,523
into which protein change can fold, and

1322
01:06:11,523 --> 01:06:13,443
how they can stick to each other in many

1323
01:06:13,443 --> 01:06:15,893
different ways to do things. Or the ways

1324
01:06:15,893 --> 01:06:17,973
in which cells can interact, like wiring

1325
01:06:17,973 --> 01:06:19,653
up in your brain... you're not in a

1326
01:06:19,653 --> 01:06:21,783
one-dimensional problem anymore. You're

1327
01:06:21,783 --> 01:06:25,783
not in Kansas anymore.

1328
01:06:25,783 --> 01:06:27,603
(Narrator) As the scientists head into

1329
01:06:27,603 --> 01:06:29,413
the world of proteins, they're looking

1330
01:06:29,413 --> 01:06:33,613
very closely at patients like Tony Ramos.

1331
01:06:33,613 --> 01:06:36,253
Tony has cystic fibrosis, but it's not the

1332
01:06:36,253 --> 01:06:40,253
typical case. CF almost always develops in

1333
01:06:40,253 --> 01:06:43,453
early childhood. Tony didn't have any

1334
01:06:43,453 --> 01:06:46,673
symptoms until she was 15.

1335
01:06:46,673 --> 01:06:49,243
Tony - I started having a cough, and then

1336
01:06:49,243 --> 01:06:51,313
we kept thinking I was catching a lot of

1337
01:06:51,313 --> 01:06:53,873
colds and my step-mother thought,

1338
01:06:53,873 --> 01:06:55,753
"Well, that's not right." So, I started

1339
01:06:55,753 --> 01:06:58,023
going to doctors, trying to figure it out.

1340
01:06:58,023 --> 01:07:02,503
And went through a lot of tests because
I don't fit the profile. Tuberculosis,

1341
01:07:02,503 --> 01:07:06,503
walking pneumonia, ya know, test after
test.

1342
01:07:07,515 --> 01:07:09,235
(Narrator) At the time of diagnosis,

1343
01:07:09,235 --> 01:07:10,965
Tony's family was told she might not

1344
01:07:10,965 --> 01:07:15,525
survive beyond her twenty-first birthday.

1345
01:07:15,525 --> 01:07:19,013
She's now in her mid-forties. But her CF

1346
01:07:19,013 --> 01:07:21,343
is worsening. 2 or 3 times a year she does

1347
01:07:21,343 --> 01:07:23,423
have to be admitted to the hospital to

1348
01:07:23,423 --> 01:07:26,793
clean out her lungs.

1349
01:07:26,793 --> 01:07:28,673
Tony - Ya know, they were always doing

1350
01:07:28,673 --> 01:07:33,053
some little funky study to help the cause,
because we're not the normal, ya know

1351
01:07:33,053 --> 01:07:35,763
there's not a whole lot of us. I know that

1352
01:07:35,763 --> 01:07:38,323
they don't know why, and it's the big

1353
01:07:38,323 --> 01:07:40,923
question mark, and hopefully research

1354
01:07:40,923 --> 01:07:43,473
will keep going and figure it out.

1355
01:07:43,473 --> 01:07:47,443
(Narrator) Here's the question: Tony was
born with a mistake in the same gene as

1356
01:07:47,443 --> 01:07:49,973
baby Riley, and yet for some reason, when

1357
01:07:49,973 --> 01:07:53,973
Tony was a baby, she didn't get sick. Why?

1358
01:07:53,973 --> 01:07:57,253
And now that she is sick, she hasn't died.

1359
01:07:57,253 --> 01:08:01,253
Why? What does Tony have that the other

1360
01:08:01,253 --> 01:08:04,073
CF patients don't have?

1361
01:08:05,812 --> 01:08:08,772
Dr. Craig Gerrard believes the answer lies

1362
01:08:08,772 --> 01:08:10,852
in her genes; in her DNA.

1363
01:08:10,852 --> 01:08:13,112
Dr. Gerrard - Good morning.
Tony - Good morning.

1364
01:08:13,112 --> 01:08:16,682
Dr. Gerrard - So, do you think the change
in the antibiotics is helping you?

1365
01:08:16,682 --> 01:08:18,642
Tony - Yes, and I've dropped four pounds

1366
01:08:18,642 --> 01:08:21,042
overnight.
Dr. Gerrard - (laughing) That's a lot of

1367
01:08:21,042 --> 01:08:21,982
weight.
Tony - Yeah!

1368
01:08:21,982 --> 01:08:24,052
Dr. Gerrard - Okay, mind if I have a
listen?

1369
01:08:24,053 --> 01:08:26,053
(Dr. Gerrard) - No gene acts in isolation,

1370
01:08:26,053 --> 01:08:29,153
it is always acting as a part of a larger

1371
01:08:29,153 --> 01:08:33,043
picture. And therefore, the other genes,

1372
01:08:33,043 --> 01:08:35,443
which compensate.

1373
01:08:35,443 --> 01:08:37,443
(Narrator) Could it be that Tony has some

1374
01:08:37,443 --> 01:08:39,883
other genetic mutations, good mutations,

1375
01:08:39,883 --> 01:08:42,643
that are producing good proteins, that

1376
01:08:42,643 --> 01:08:44,703
kept her healthy for 15 years and are

1377
01:08:44,703 --> 01:08:47,353
keeping her alive right now?

1378
01:08:47,353 --> 01:08:51,113
(Dr. Gerrard) You sound a lot better than
you did when you came in. So, I think

1379
01:08:51,113 --> 01:08:54,273
you're on the mend. Okay, hang in there.
Tony - Thanks, bye.

1380
01:08:54,273 --> 01:08:56,103
Dr. Gerrard - In my opinion, there are

1381
01:08:56,103 --> 01:08:59,083
genes that are allowing her to have a

1382
01:08:59,083 --> 01:09:03,083
more beneficial course, if you will, than

1383
01:09:03,083 --> 01:09:06,743
another patient.

1384
01:09:06,743 --> 01:09:10,493
Woman - You sound good.

1385
01:09:10,493 --> 01:09:12,373
(Narrator) Dr. Gerrard is searching for

1386
01:09:12,373 --> 01:09:16,213
the special ingredient in Tony. If it

1387
01:09:16,213 --> 01:09:18,563
turns out she has one or two proteins that

1388
01:09:18,563 --> 01:09:20,823
are helping her, maybe we could bottle

1389
01:09:20,823 --> 01:09:23,553
them and use them to help all CF patients,

1390
01:09:23,553 --> 01:09:25,603
like little Riley.

1391
01:09:25,603 --> 01:09:29,273
(Woman) If there was ever an emergency,
and I didn't know how to do it, and I

1392
01:09:29,273 --> 01:09:32,573
couldn't get in touch with you--
(Narrator) No one can predict Riley's

1393
01:09:32,573 --> 01:09:36,363
future, or to what extent CF will affect
his life. But now that we are getting a

1394
01:09:36,363 --> 01:09:38,523
map of our genes, we'll be able to take

1395
01:09:38,523 --> 01:09:41,383
the next big step. Because, what genes

1396
01:09:41,383 --> 01:09:45,383
do, basically, is they make proteins.

1397
01:09:46,108 --> 01:09:48,128
Narrator - I get the sense that everybody

1398
01:09:48,128 --> 01:09:51,808
is getting out of the gene business, and
suddenly going into this new business

1399
01:09:51,808 --> 01:09:53,918
I hear about, called, "The Protein
Business."

1400
01:09:53,918 --> 01:09:57,288
There's even a new name, instead of
"The Genome" I'm hearing this other

1401
01:09:57,288 --> 01:09:59,278
name, "The Proteome".
Eric - The Proteome.

1402
01:09:59,278 --> 01:10:00,958
(Narrator) The Proteome.
Eric - Yes.

1403
01:10:00,958 --> 01:10:04,098
(Narrator) What is that?
Eric - Well, the genome is the collection

1404
01:10:04,098 --> 01:10:07,938
of all your genes and DNA. The proteome,
is the collection of all your proteins.

1405
01:10:07,938 --> 01:10:11,938
See, what's happening is, we're realizing
that if we wanted to understand life, we

1406
01:10:11,938 --> 01:10:14,158
had to start systematically at the bottom

1407
01:10:14,158 --> 01:10:16,198
and get all the building blocks. The first

1408
01:10:16,198 --> 01:10:18,838
building blocks are the DNA letters, from

1409
01:10:18,838 --> 01:10:21,578
them we can infer the genes. From the

1410
01:10:21,578 --> 01:10:24,518
genes we can infer the protein products

1411
01:10:24,518 --> 01:10:26,398
that they make, that do all the work of

1412
01:10:26,398 --> 01:10:28,628
the cell. Then we've gotta understand what

1413
01:10:28,628 --> 01:10:30,418
each of those proteins does, what its

1414
01:10:30,418 --> 01:10:32,458
shape is, how they interact with each

1415
01:10:32,458 --> 01:10:35,198
other, and how they make kind of circuits

1416
01:10:35,198 --> 01:10:37,208
and connections with each other. So,

1417
01:10:37,208 --> 01:10:39,408
in some sense, this is just the beginning

1418
01:10:39,408 --> 01:10:42,378
of a very comprehensive, systematic

1419
01:10:42,378 --> 01:10:45,768
program to understand all the components

1420
01:10:45,768 --> 01:10:48,168
and how they all connect with each other.

1421
01:10:48,168 --> 01:10:50,178
(Narrator) All the components and how they

1422
01:10:50,178 --> 01:10:52,548
connect. But how many components are

1423
01:10:52,548 --> 01:10:55,308
there? How many genes and how many

1424
01:10:55,308 --> 01:10:57,228
proteins do we have?

1425
01:10:57,228 --> 01:10:58,948
Eric - A real shock about the genome

1426
01:10:58,948 --> 01:11:01,528
sequence was that we have so many fewer

1427
01:11:01,528 --> 01:11:03,148
genes than we've been teaching our

1428
01:11:03,148 --> 01:11:05,408
students. The official textbook answer is

1429
01:11:05,408 --> 01:11:08,158
the human has a 100,000 genes. Everyone's

1430
01:11:08,158 --> 01:11:11,068
known that since the early 1980's, the

1431
01:11:11,068 --> 01:11:13,298
only problem is is it's not true. Turns

1432
01:11:13,298 --> 01:11:16,278
we only have 30,000 or so genes.

1433
01:11:16,278 --> 01:11:18,428
(Narrator) 30,000 genes, that's it? Not

1434
01:11:18,428 --> 01:11:20,258
everybody agrees with this number, but

1435
01:11:20,258 --> 01:11:24,828
that's about as many as a mouse. Even
a fruit-fly has 14,000 genes.

1436
01:11:24,828 --> 01:11:26,708
Eric - That's really bothersome to many

1437
01:11:26,708 --> 01:11:29,228
people that we only have about twice as

1438
01:11:29,228 --> 01:11:31,248
many genes as a fruit-fly, because we

1439
01:11:31,248 --> 01:11:33,288
really like to think of ourselves as a lot

1440
01:11:33,288 --> 01:11:35,328
more than twice as complex. Well, don't

1441
01:11:35,328 --> 01:11:37,328
you? I certainly like to think of myself

1442
01:11:37,328 --> 01:11:40,558
that way. And so, it raises two questions,

1443
01:11:40,558 --> 01:11:42,548
are we really more complex?

1444
01:11:42,548 --> 01:11:46,388
Narrator - You show me the fruit fly that
can compose like Mozart and then I'll--

1445
01:11:46,388 --> 01:11:48,438
Eric - Well, show me a human that can fly.

1446
01:11:48,438 --> 01:11:50,288
Right? So...
(Narrator) Ooo (laughing)

1447
01:11:50,288 --> 01:11:52,608
Eric - (laughing) We all have our talents,
right?

1448
01:11:52,608 --> 01:11:54,648
(Narrator) I suppose we do, but as it

1449
01:11:54,648 --> 01:11:57,088
happens, we have lots of genes that are

1450
01:11:57,088 --> 01:12:00,728
virtually identical in us and fruit flies.

1451
01:12:00,728 --> 01:12:03,658
But, happily, our genes seem to do more,

1452
01:12:03,658 --> 01:12:07,238
so, let's say that I am a fruit fly. One
of

1453
01:12:07,238 --> 01:12:11,238
my fruit fly genes may make one and two

1454
01:12:11,238 --> 01:12:14,068
slightly different proteins, but now I'm a

1455
01:12:14,068 --> 01:12:16,548
human and the very same gene in me

1456
01:12:16,548 --> 01:12:20,878
might make one, two, three, four different

1457
01:12:20,878 --> 01:12:23,118
proteins, and these four proteins could

1458
01:12:23,118 --> 01:12:29,058
combine and build even bigger and more
proteins.

1459
01:12:29,058 --> 01:12:32,238
Eric - It turns out, that the gene makes a

1460
01:12:32,238 --> 01:12:35,318
message, but the message can be spliced up

1461
01:12:35,318 --> 01:12:37,428
in different ways. And, so, a gene might

1462
01:12:37,428 --> 01:12:39,988
make three proteins or four proteins

1463
01:12:39,988 --> 01:12:42,708
and then that protein can get modified.

1464
01:12:42,708 --> 01:12:44,658
There could be other proteins that stick

1465
01:12:44,658 --> 01:12:48,208
some phosphate group on it or two

1466
01:12:48,208 --> 01:12:52,698
phosphates groups. And, in fact, all these

1467
01:12:52,698 --> 01:12:55,308
modifications to the proteins could make

1468
01:12:55,308 --> 01:12:57,248
them function differently. So, while you

1469
01:12:57,248 --> 01:13:00,308
might only have 30,000 genes, you could

1470
01:13:00,308 --> 01:13:02,748
have 100,000 distinct proteins, and when

1471
01:13:02,748 --> 01:13:06,428
you're done putting all of the different
modifications on them, there might be

1472
01:13:06,428 --> 01:13:08,488
a million of them.
(narrator clears throat)

1473
01:13:08,488 --> 01:13:09,208
Scary thought.

1474
01:13:09,208 --> 01:13:11,268
Narrator - So, starting with the same raw

1475
01:13:11,268 --> 01:13:16,258
ingredients, the fruit fly goes, "mmm,
spch, mmm, spch, mmm, spch."

1476
01:13:16,258 --> 01:13:19,238
but the human, by somehow or other, being

1477
01:13:19,238 --> 01:13:21,018
able to arrange all the parts in many

1478
01:13:21,018 --> 01:13:25,698
different ways, can produce melodies,
perhaps?

1479
01:13:25,698 --> 01:13:28,828
Eric - Yes, although we're not that good

1480
01:13:28,828 --> 01:13:31,578
at hearing the melodies yet. One of the

1481
01:13:31,578 --> 01:13:36,418
exciting things about reading the genome
sequence now, is we're getting a glimpse

1482
01:13:36,418 --> 01:13:39,348
at that complexity of the parts and how

1483
01:13:39,348 --> 01:13:42,428
it's a symphony, rather than a simple tune

1484
01:13:42,428 --> 01:13:46,278
but it's not that easy to just read
that sheet

1485
01:13:46,278 --> 01:13:48,858
music there and hear the symphony that's

1486
01:13:48,858 --> 01:13:51,268
coming out of it.

1487
01:13:51,268 --> 01:13:54,898
(Narrator) Okay, so it's not just the
number of genes, it's all the different

1488
01:13:54,898 --> 01:13:59,058
proteins they can make and the ways those
proteins interact, and to find out all of

1489
01:13:59,058 --> 01:14:01,378
those interactions and how they affect

1490
01:14:01,378 --> 01:14:03,608
health and disease, that's gonna keep

1491
01:14:03,608 --> 01:14:05,688
scientists very busy for the next few

1492
01:14:05,688 --> 01:14:08,678
decades. But, of course, before the

1493
01:14:08,678 --> 01:14:11,278
research can begin in earnest, they first

1494
01:14:11,278 --> 01:14:13,478
have to complete the parts list of all the

1495
01:14:13,478 --> 01:14:17,478
genes. And by the spring of 2000, both

1496
01:14:17,478 --> 01:14:20,098
sides, the public labs and Celera, they

1497
01:14:20,098 --> 01:14:23,418
were in hyper-drive. Each camp madly

1498
01:14:23,418 --> 01:14:26,338
trying to be first to reach the finish
line and get

1499
01:14:26,338 --> 01:14:30,338
all 3 billion letters.

1500
01:14:30,338 --> 01:14:32,278
(Gene Myers) The pace of things, and the

1501
01:14:32,278 --> 01:14:34,848
magnitude of things was really incredible.

1502
01:14:34,848 --> 01:14:36,728
I mean, I would remember coming in and

1503
01:14:36,728 --> 01:14:38,858
just having this gripping feeling in my

1504
01:14:38,858 --> 01:14:42,858
gut, just an intense, "Oh my God, am up to
this?"

1505
01:14:45,020 --> 01:14:47,130
Robert Cook-Degan - You know whoever has

1506
01:14:47,130 --> 01:14:48,860
this reference sequence to the human

1507
01:14:48,860 --> 01:14:50,940
genome out there in the world first...

1508
01:14:50,940 --> 01:14:53,750
they're going to be famous. They're gonna

1509
01:14:53,750 --> 01:14:55,830
be on the front page of The New York 
Times,

1510
01:14:55,830 --> 01:14:57,840
and a lot more than that, for a long time.

1511
01:14:57,840 --> 01:15:01,210
And they're gonna be, ya know, 
celebrities.

1512
01:15:01,210 --> 01:15:05,650
And, ya know, when that's going on, it's

1513
01:15:05,650 --> 01:15:07,610
not unreasonable that people are gonna

1514
01:15:07,610 --> 01:15:09,530
reach for that star and try to get there

1515
01:15:09,530 --> 01:15:13,530
before the other person.

1516
01:15:13,530 --> 01:15:15,730
(Tony White) I thought that the 
really intense

1517
01:15:15,730 --> 01:15:19,330
Tony - competition of this world was
among business, where there is a profit

1518
01:15:19,330 --> 01:15:23,790
motive. I now find that we are pikers in
the business world, compared to the

1519
01:15:23,790 --> 01:15:27,010
academic competition that exists out
there.

1520
01:15:27,010 --> 01:15:31,010
And I'm beginning to understand why,
because their currency is publication.

1521
01:15:31,010 --> 01:15:33,290
Their currency is attribution. And their

1522
01:15:33,290 --> 01:15:37,290
next funding comes from their last 
victory.

1523
01:15:38,467 --> 01:15:42,427
(Robert) I think we're all better off for
the fact that there is this competition.

1524
01:15:42,427 --> 01:15:45,362
What you want is a system that gets

1525
01:15:45,362 --> 01:15:47,432
people riled up and try to do something

1526
01:15:47,432 --> 01:15:51,432
faster, better, and cheaper than the next
guy.

1527
01:15:53,268 --> 01:15:55,088
(New Speaker, Male) The environment at

1528
01:15:55,088 --> 01:16:00,268
Celera was extremely intense and it
reminded me of finals week at Cal. Tech.

1529
01:16:00,268 --> 01:16:02,388
Man - And there's a tradition at Cal. Tech

1530
01:16:02,388 --> 01:16:05,188
that on the very first day of finals week,

1531
01:16:05,188 --> 01:16:07,848
the Ride of The Valkyries is played at
full blast.

1532
01:16:07,848 --> 01:16:09,688
And, so, I thought well, since every

1533
01:16:09,688 --> 01:16:11,768
week feels like it's finals week here, why

1534
01:16:11,768 --> 01:16:14,698
don't I play the ride and see what
happens?

1535
01:16:14,698 --> 01:16:16,618
So, we got a whole bunch of viking hats,

1536
01:16:16,618 --> 01:16:19,578
and we end up buying Nerf bows, because

1537
01:16:19,578 --> 01:16:23,578
we're Nordic Valkyrians. So, the next week

1538
01:16:23,578 --> 01:16:25,528
we're shooting each other, and we go,

1539
01:16:25,528 --> 01:16:29,248
"Ya know, there's something not right
about this." So, we decided the next week

1540
01:16:29,248 --> 01:16:33,888
that we would start doing raiding parties
and raid some of the other teams.

1541
01:16:33,888 --> 01:16:37,888
Unannounced to us, they had been preparing
themselves.

1542
01:16:37,888 --> 01:16:39,888
Man - Hey, you guys go to the back-stairs.

1543
01:16:39,888 --> 01:16:42,678
(Man) - They had little beanie caps, and

1544
01:16:42,678 --> 01:16:46,678
their own Nerf weapons and the war
started.

1545
01:16:46,678 --> 01:16:50,958
(shooting sounds)
(Ride of the Valkyries music playing)

1546
01:16:50,958 --> 01:16:55,878
(shooting sounds)

1547
01:16:55,878 --> 01:16:58,668
(laughing)

1548
01:16:58,668 --> 01:17:02,668
(shooting)

1549
01:17:09,198 --> 01:17:13,988
(Man) It's just a release. It's a way of

1550
01:17:13,988 --> 01:17:15,948
dealing with the pressure, I think.

1551
01:17:15,948 --> 01:17:19,948
(laughing)
(shooting)

1552
01:17:24,596 --> 01:17:26,566
(Man) We all ran like crazy for 5 or 10

1553
01:17:26,566 --> 01:17:30,566
minutes, and got a little physical
exercise.

1554
01:17:32,582 --> 01:17:35,522
And, had a few laughs and then we're

1555
01:17:35,522 --> 01:17:39,522
ready to really go after it.
(laughing)

1556
01:17:40,392 --> 01:17:43,402
(Narrator) The Wagner seems to be working.

1557
01:17:43,402 --> 01:17:46,202
Output at Celera continues at a relentless

1558
01:17:46,202 --> 01:17:51,042
pace. Venter insists that the urgency

1559
01:17:51,042 --> 01:17:53,162
stems not only from a desire to beat

1560
01:17:53,162 --> 01:17:55,412
the government project, but the firm

1561
01:17:55,412 --> 01:17:57,292
belief that what's coming out of these

1562
01:17:57,292 --> 01:17:59,732
machines, all the C's, T's, G's, and A's,

1563
01:17:59,732 --> 01:18:03,732
will have a profound impact on all our
lives.

1564
01:18:05,380 --> 01:18:07,660
(Venter) It's a new beginning in science.

1565
01:18:07,660 --> 01:18:09,940
And, until we get all that data, that

1566
01:18:09,940 --> 01:18:12,460
can't really take place.
Venter - I mean anyone who

1567
01:18:12,460 --> 01:18:14,870
has cancer, anybody who has a family

1568
01:18:14,870 --> 01:18:18,020
member with a serious disease, this data

1569
01:18:18,020 --> 01:18:19,830
and information offers some tremendous

1570
01:18:19,830 --> 01:18:22,820
hope that things could change in the 
future.

1571
01:18:22,820 --> 01:18:26,550
Eric Lander - In the past, if you wanted
to explain Diabetes, you always had to

1572
01:18:26,550 --> 01:18:30,430
scratch your head and say, "Well, it might
be something else that we've never seen

1573
01:18:30,430 --> 01:18:33,910
before." But knowing that you have the
whole parts list, radically changes

1574
01:18:33,910 --> 01:18:37,580
biomedical research. Because you can't
wave hand and say it might be something

1575
01:18:37,580 --> 01:18:40,380
else. There is no "something else".

1576
01:18:40,380 --> 01:18:43,380
(Man) 1, 2, 3, 4, 5 C's in a row.

1577
01:18:43,380 --> 01:18:46,150
(Narrator) In the past,
Narrator - Finding genes that cause

1578
01:18:46,150 --> 01:18:48,430
disease was a painstakingly slow process,

1579
01:18:48,430 --> 01:18:51,590
but, with the completion of a list, it

1580
01:18:51,590 --> 01:18:53,500
should be much easier to make a direct

1581
01:18:53,500 --> 01:18:57,840
connection from disease to gene. But how?

1582
01:18:57,840 --> 01:18:59,680
Well, let's say I'm looking for a gene

1583
01:18:59,680 --> 01:19:02,000
that causes something, we'll make it

1584
01:19:02,000 --> 01:19:04,480
Male Pattern Baldness, how would I go

1585
01:19:04,480 --> 01:19:06,680
about that. Well, I'd want to get a bunch

1586
01:19:06,680 --> 01:19:09,100
of bald guys. So, here are three bald guys

1587
01:19:09,100 --> 01:19:11,900
and take their blood and look at their

1588
01:19:11,900 --> 01:19:14,880
DNA. Now, I'll take three guys with lots

1589
01:19:14,880 --> 01:19:17,920
of hair, and here's their DNA. And, what

1590
01:19:17,920 --> 01:19:20,760
if the bald guys all share a particular

1591
01:19:20,760 --> 01:19:23,410
spelling right here in this spot, which we

1592
01:19:23,410 --> 01:19:26,400
will call, "The Bald Spot", and at the

1593
01:19:26,400 --> 01:19:28,920
same spot, you notice the hairy guys have

1594
01:19:28,920 --> 01:19:34,280
a different spelling. So, is this the gene

1595
01:19:34,280 --> 01:19:37,960
that causes baldness? Maybe, but probably

1596
01:19:37,960 --> 01:19:40,580
not. This could be a coincidence. So, how

1597
01:19:40,580 --> 01:19:42,610
do I improve my chances of finding the

1598
01:19:42,610 --> 01:19:44,790
specific spelling difference that relates

1599
01:19:44,790 --> 01:19:48,270
to baldness? It would help if I knew that

1600
01:19:48,270 --> 01:19:50,350
the bald guys, and the hairy guys had

1601
01:19:50,350 --> 01:19:54,350
really similar DNA, except for the genes

1602
01:19:54,350 --> 01:19:57,340
I suspect may make them bald or hairy.

1603
01:19:57,340 --> 01:19:59,420
Where do I find guys who are very very

1604
01:19:59,420 --> 01:20:02,700
similar with a few exceptions? A family

1605
01:20:02,700 --> 01:20:04,740
right? If they were brothers, and fathers,

1606
01:20:04,740 --> 01:20:06,740
and sons, and cousins, for instance, who

1607
01:20:06,740 --> 01:20:08,900
share lots of genes...

1608
01:20:08,900 --> 01:20:12,820
(Narrator) So, let's say these three guys
are brothers. Astonishing similarities,

1609
01:20:12,820 --> 01:20:16,820
really, in the face, but notice that one
of them is hairy and two are bald.

1610
01:20:16,820 --> 01:20:19,680
Whatever is making this one different,

1611
01:20:19,680 --> 01:20:22,030
should stand out when you compare their

1612
01:20:22,030 --> 01:20:25,190
genes. And same for these guys. There's

1613
01:20:25,190 --> 01:20:27,410
a difference clearly in the photos, but

1614
01:20:27,410 --> 01:20:30,970
that difference may turn up in the genes.

1615
01:20:30,970 --> 01:20:34,630
Narrator - You can do the same thing for
any disease that you'd like. So, if I

1616
01:20:34,630 --> 01:20:38,290
could comb through the DNA of lots of
people who are related, and I find some

1617
01:20:38,290 --> 01:20:41,840
of them are sick and some of them are
healthy, I might have a much better

1618
01:20:41,840 --> 01:20:47,130
chance of figuring out which genes are
involved. But where do I do this?

1619
01:20:49,276 --> 01:20:52,036
(Narrator) Well, one place is a little

1620
01:20:52,036 --> 01:20:54,916
island nation in the North Atlantic,

1621
01:20:54,916 --> 01:20:58,916
Iceland. In many ways, Iceland is the

1622
01:20:58,916 --> 01:21:00,796
perfect place to look for genes that

1623
01:21:00,796 --> 01:21:05,286
cause diseases. It's got a tiny population

1624
01:21:05,286 --> 01:21:08,436
only about 280,000 people, and virtually

1625
01:21:08,436 --> 01:21:10,556
all of them are descended from the

1626
01:21:10,556 --> 01:21:13,276
original settlers: Vikings who came here

1627
01:21:13,276 --> 01:21:15,716
over 1,000 years ago.

1628
01:21:15,716 --> 01:21:17,536
(music playing)

1629
01:21:17,536 --> 01:21:20,066
(Kari) If you drive around this country,

1630
01:21:20,066 --> 01:21:22,586
you will have great difficulties finding

1631
01:21:22,586 --> 01:21:25,176
any evidence of a dynamic culture that

1632
01:21:25,176 --> 01:21:27,586
was here for all of these 1,100 years.

1633
01:21:27,586 --> 01:21:29,626
There are no great buildings, there are

1634
01:21:29,626 --> 01:21:32,366
no monuments.

1635
01:21:32,366 --> 01:21:34,306
(Narrator) But, one thing Iceland does

1636
01:21:34,306 --> 01:21:36,346
have is a fantastic written history,

1637
01:21:36,346 --> 01:21:40,346
including almost everybody's family tree.

1638
01:21:42,595 --> 01:21:46,595
And now, it's all in a giant database.

1639
01:21:46,595 --> 01:21:49,275
Just punch in a social security number and

1640
01:21:49,275 --> 01:21:52,115
there they are, all of your ancestors,

1641
01:21:52,115 --> 01:21:54,675
right back to the original Viking.

1642
01:21:54,675 --> 01:21:56,535
Thordur - So, what we have here is my

1643
01:21:56,535 --> 01:21:59,425
ancestor tree. I'm here at the bottom,

1644
01:21:59,425 --> 01:22:02,785
this is my father and mother. My
grandparents,

1645
01:22:02,785 --> 01:22:04,985
great-grandparents, and so on. We

1646
01:22:04,985 --> 01:22:07,705
can find an individual that was one of

1647
01:22:07,705 --> 01:22:10,145
the original settlers of Iceland. Here we

1648
01:22:10,145 --> 01:22:13,535
have, "Ketill Bjarnarson" called,

1649
01:22:13,535 --> 01:22:15,905
"Ketill "flatnefur", meaning he had a

1650
01:22:15,905 --> 01:22:18,945
flat nose. So, he may have broken it in

1651
01:22:18,945 --> 01:22:21,425
a fight or something. And we estimate

1652
01:22:21,425 --> 01:22:25,425
that he was born around the year 805.

1653
01:22:25,425 --> 01:22:27,645
(music playing)

1654
01:22:27,645 --> 01:22:29,605
(Narrator) Kari Stephanson is a Harvard

1655
01:22:29,605 --> 01:22:31,645
trained scientist who saw the potentional

1656
01:22:31,645 --> 01:22:33,685
gold mine that might be hidden in

1657
01:22:33,685 --> 01:22:37,965
Iceland's genetic history. He set up a

1658
01:22:37,965 --> 01:22:40,526
company called, "Decode Genetics" to

1659
01:22:40,526 --> 01:22:42,366
combine age-old family trees with

1660
01:22:42,366 --> 01:22:44,646
state-of-the-art DNA analysis and computer

1661
01:22:44,646 --> 01:22:47,646
technology, and systematically hunt down

1662
01:22:47,646 --> 01:22:50,926
the genes that cause disease.

1663
01:22:50,926 --> 01:22:52,786
Kari - Our idea was to try to bring

1664
01:22:52,786 --> 01:22:55,386
together as much data on healthcare

1665
01:22:55,386 --> 01:22:58,316
as possible. As much data on genetics

1666
01:22:58,316 --> 01:23:01,196
as possible, and the genealogy, and simply

1667
01:23:01,196 --> 01:23:03,726
use the information tools to help us to

1668
01:23:03,726 --> 01:23:05,806
discover new knowledge. To discover

1669
01:23:05,806 --> 01:23:09,806
new ways to diagnose, treat, prevent
diseases.

1670
01:23:11,475 --> 01:23:13,425
(Narrator) One of Decode's first projects

1671
01:23:13,425 --> 01:23:18,665
was to look for the genes that might
cause Osteoarthritis.

1672
01:23:18,665 --> 01:23:20,585
Ryn Hydr Magnus Dotre had the

1673
01:23:20,585 --> 01:23:23,745
debilitating disease most of her life.

1674
01:23:23,745 --> 01:23:28,905
Ryn - The first symptoms appeared when I

1675
01:23:28,905 --> 01:23:32,905
was 12, and by the age of 14 my knees

1676
01:23:32,905 --> 01:23:37,705
hurt very badly. No one really paid any

1677
01:23:37,705 --> 01:23:41,495
attention, that's just the way it was.

1678
01:23:41,495 --> 01:23:44,575
But, by the age of 39, I'd had enough, so

1679
01:23:44,575 --> 01:23:49,205
I went to a Doctor.

1680
01:23:49,425 --> 01:23:52,025
(Narrator) Mrs. Magnus was never alone in

1681
01:23:52,025 --> 01:23:56,025
her suffering, she is one of 17 children.

1682
01:23:56,025 --> 01:23:58,385
11 of them were so stricken with arthritis

1683
01:23:58,385 --> 01:24:01,475
that they had to have their hips replaced.

1684
01:24:01,475 --> 01:24:03,615
This was exactly the kind of family that

1685
01:24:03,615 --> 01:24:07,135
Decode was looking for. They got

1686
01:24:07,135 --> 01:24:09,745
Mrs. Magnus and other members of her

1687
01:24:09,745 --> 01:24:12,235
family to donate blood samples for DNA

1688
01:24:12,235 --> 01:24:14,845
analysis. And to find more of her

1689
01:24:14,845 --> 01:24:17,145
relatives, people she'd never met,

1690
01:24:17,145 --> 01:24:19,305
Decode just entered her social security

1691
01:24:19,305 --> 01:24:22,335
number into their giant database and there

1692
01:24:22,335 --> 01:24:26,335
they were. But which of these people have

1693
01:24:26,335 --> 01:24:30,815
Arthritis? To find out, Stephanson asked

1694
01:24:30,815 --> 01:24:32,605
the government of Iceland to give his

1695
01:24:32,605 --> 01:24:34,965
company exclusive access to the entire

1696
01:24:34,965 --> 01:24:37,785
country's medical records. In exchange,

1697
01:24:37,785 --> 01:24:39,985
Decode would pay a million dollars a year

1698
01:24:39,985 --> 01:24:42,615
plus a share of any profits. That way,

1699
01:24:42,615 --> 01:24:44,775
Decode could link everything in their

1700
01:24:44,775 --> 01:24:47,695
computers: DNA, health records, and

1701
01:24:47,695 --> 01:24:49,965
family trees.

1702
01:24:49,965 --> 01:24:53,045
Stephanson - This idea was probably more

1703
01:24:53,045 --> 01:24:55,325
debated than any other issue in the

1704
01:24:55,325 --> 01:24:58,605
history of the republic. On the eve of

1705
01:24:58,605 --> 01:25:00,745
that parliamentary vote, on the bill,

1706
01:25:00,745 --> 01:25:03,345
there was an opinion poll taken that

1707
01:25:03,345 --> 01:25:05,345
showed that 75% of those that took a

1708
01:25:05,345 --> 01:25:07,345
stand on the issue, supported the

1709
01:25:07,345 --> 01:25:11,345
passage of the bill, 25% were against it.

1710
01:25:11,345 --> 01:25:13,605
(Narrator) Among that 25% against were

1711
01:25:13,605 --> 01:25:17,605
most of Iceland's doctors.

1712
01:25:17,605 --> 01:25:19,815
(Tomas Zoega) I first thought that there

1713
01:25:19,815 --> 01:25:22,615
was something fundamentally wrong

1714
01:25:22,615 --> 01:25:24,975
in all of this. They do know everything

1715
01:25:24,975 --> 01:25:27,585
about you. Not only about your medical

1716
01:25:27,585 --> 01:25:29,975
history, about your medical past, but now

1717
01:25:29,975 --> 01:25:34,715
have your gene, the DNA. They know about

1718
01:25:34,715 --> 01:25:38,715
your future, about something about your

1719
01:25:38,715 --> 01:25:41,075
children, and something about your elders.

1720
01:25:41,075 --> 01:25:43,655
Bjorn Gundmarsson - We find ourselves

1721
01:25:43,655 --> 01:25:45,795
paralyzed, because there is really nothing

1722
01:25:45,795 --> 01:25:48,755
we can do. Because the one who takes the

1723
01:25:48,755 --> 01:25:51,775
responsibility is the management of the

1724
01:25:51,775 --> 01:25:54,785
Health Center. If they give away this

1725
01:25:54,785 --> 01:25:58,105
information from the medical records, they

1726
01:25:58,105 --> 01:26:00,785
get money. And everybody needs money.

1727
01:26:00,785 --> 01:26:04,595
Healthcare really needs money.

1728
01:26:04,595 --> 01:26:06,605
Narrator - So, what's really the problem

1729
01:26:06,605 --> 01:26:10,395
here? Well, let's take a hypothetical
example, I'm gonna make all this up. Let's

1730
01:26:10,395 --> 01:26:14,075
pretend these are medical records of an
average person, all we'll suppose that

1731
01:26:14,075 --> 01:26:19,635
right here I see a HIV test, and then over
here is medication for anxiety after what

1732
01:26:19,635 --> 01:26:23,025
appears to be a messy divorce, and over

1733
01:26:23,025 --> 01:26:26,025
here a parent who died of Alzheimer's.

1734
01:26:26,025 --> 01:26:27,965
Now, this is all stuff that could happen

1735
01:26:27,965 --> 01:26:29,875
to anybody, but do you want it all in

1736
01:26:29,875 --> 01:26:32,525
a central computer bank, and do you

1737
01:26:32,525 --> 01:26:34,605
want it linked in the same computer

1738
01:26:34,605 --> 01:26:36,845
to all of your relatives? And to your own

1739
01:26:36,845 --> 01:26:39,925
personal DNA file? And should anybody have

1740
01:26:39,925 --> 01:26:41,995
to go on a fishing expedition through

1741
01:26:41,995 --> 01:26:46,365
your medical history, and your DNA?

1742
01:26:46,365 --> 01:26:48,325
(Narrator) Well, it may frightening, but

1743
01:26:48,325 --> 01:26:51,865
it also might work. Decode claims it's

1744
01:26:51,865 --> 01:26:53,665
discovered several genes that may

1745
01:26:53,665 --> 01:26:56,665
contribute to Osteoarthritis. So, this

1746
01:26:56,665 --> 01:26:58,875
approach, combining family trees, medical

1747
01:26:58,875 --> 01:27:01,075
records, and DNA could lead to better

1748
01:27:01,075 --> 01:27:04,335
drugs, or to cures for a whole range of

1749
01:27:04,335 --> 01:27:05,935
diseases.

1750
01:27:05,935 --> 01:27:07,805
Stephanson - To have all of the data in

1751
01:27:07,805 --> 01:27:10,245
one place so you can use the modern

1752
01:27:10,245 --> 01:27:13,125
information equipment, to juxtapose the

1753
01:27:13,125 --> 01:27:15,185
pieces of data and hope that the pieces

1754
01:27:15,185 --> 01:27:17,585
fit. It's an absolutely fascinating

1755
01:27:17,585 --> 01:27:18,625
possibility.

1756
01:27:18,625 --> 01:27:20,065
(printing sounds)

1757
01:27:20,065 --> 01:27:22,115
(Narrator) Stephanson says no one's forced

1758
01:27:22,115 --> 01:27:24,175
to do this, and there are elaborate
privacy

1759
01:27:24,175 --> 01:27:26,505
protections in place. No names are used,

1760
01:27:26,505 --> 01:27:29,235
social security numbers are encoded. He

1761
01:27:29,235 --> 01:27:31,335
also argues that the DNA part of the

1762
01:27:31,335 --> 01:27:34,225
database is voluntary.

1763
01:27:34,225 --> 01:27:37,715
Stephanson - The healthcare database
only contains healthcare information.

1764
01:27:37,715 --> 01:27:41,095
We can cross reference it with DNA

1765
01:27:41,095 --> 01:27:42,845
information, but only from those

1766
01:27:42,845 --> 01:27:45,635
individuals who have been willing to give

1767
01:27:45,635 --> 01:27:47,695
us blood, allowing us to isolate DNA,

1768
01:27:47,695 --> 01:27:50,025
genotype it and cross referencing it with

1769
01:27:50,025 --> 01:27:52,575
the database. Only from those who have

1770
01:27:52,575 --> 01:27:55,855
deliberately taken that risk. It's not

1771
01:27:55,855 --> 01:27:58,675
imposed on anyone, and no one who is

1772
01:27:58,675 --> 01:28:02,675
scared of it, ya know who is really afraid

1773
01:28:02,675 --> 01:28:06,675
of it, should come and give us blood.

1774
01:28:06,675 --> 01:28:08,505
(Narrator) DNA databases are popping

1775
01:28:08,505 --> 01:28:12,505
up all over the world, including the US.

1776
01:28:12,505 --> 01:28:15,385
They all have rules for protecting privacy

1777
01:28:15,385 --> 01:28:18,395
but they still make ethicists nervous.

1778
01:28:18,395 --> 01:28:22,545
(George Annas) I like to use the analogy
of the DNA molecule to a "future diary".

1779
01:28:22,685 --> 01:28:25,165
There's a lot of information in the DNA

1780
01:28:25,165 --> 01:28:28,785
molecule. The reason I call it a "future
diary",

1781
01:28:28,785 --> 01:28:30,785
is because I think it's that private.

1782
01:28:30,785 --> 01:28:32,715
I don't think anybody should be able to

1783
01:28:32,715 --> 01:28:36,345
open up your future diary, except you.

1784
01:28:36,345 --> 01:28:38,165
(Narrator) One rather bleak vision of

1785
01:28:38,165 --> 01:28:40,135
where all of this could lead it presented

1786
01:28:40,135 --> 01:28:43,175
in the Hollywood film, "GATTACA".

1787
01:28:43,175 --> 01:28:45,615
This is a world where everybody's DNA,

1788
01:28:45,615 --> 01:28:47,735
everybody's future diary, is an open

1789
01:28:47,735 --> 01:28:51,455
book. Everyone who can afford to has

1790
01:28:51,455 --> 01:28:54,375
their children made to spec. But what

1791
01:28:54,375 --> 01:28:56,695
happens to the poor slob who's conceived

1792
01:28:56,695 --> 01:28:58,775
the old fashion way?

1793
01:28:58,775 --> 01:29:00,455
(Boy from GATTACA film) I'll never

1794
01:29:00,455 --> 01:29:03,995
understand what possessed my mother
to her faith in God's hands rather than

1795
01:29:03,995 --> 01:29:08,725
those of her local geneticists.
(baby crying)

1796
01:29:08,725 --> 01:29:11,085
Ten fingers, ten toes; that's all that

1797
01:29:11,085 --> 01:29:14,465
used to matter. Not now... now, only

1798
01:29:14,465 --> 01:29:17,405
seconds old, the exact time and cause of
(suction noise)

1799
01:29:17,405 --> 01:29:20,825
my death was already known.

1800
01:29:20,825 --> 01:29:24,385
(baby crying)

1801
01:29:24,385 --> 01:29:26,445
Nurse - Neurological condition: 60%

1802
01:29:26,445 --> 01:29:30,445
probability. ADD: 89% probability.

1803
01:29:30,445 --> 01:29:35,925
Heart disorder....: 99% probability.

1804
01:29:36,150 --> 01:29:42,010
Life expectancy: 30.2 years.
Father - 30 years...

1805
01:29:42,010 --> 01:29:44,510
(Narrator) 30.2 years. The nurse seems to

1806
01:29:44,510 --> 01:29:46,510
know precisely what is going to happen to

1807
01:29:46,510 --> 01:29:48,870
this baby, which is ridiculous, right?

1808
01:29:48,870 --> 01:29:52,170
Never happen. Or... is it possible that

1809
01:29:52,170 --> 01:29:54,100
one day we will be able to look, with

1810
01:29:54,100 --> 01:29:56,620
disturbing clarity, into our future?

1811
01:29:56,620 --> 01:30:00,620
10, 20, even 70 years ahead...

1812
01:30:01,550 --> 01:30:03,790
George - That is one possible future,

1813
01:30:03,790 --> 01:30:06,430
where this becomes so routine that, at

1814
01:30:06,430 --> 01:30:09,050
birth, everyone gets a profile that goes

1815
01:30:09,050 --> 01:30:11,200
right to their medical record, one copy

1816
01:30:11,200 --> 01:30:13,640
goes to the FBI, so we have an 
identification

1817
01:30:13,640 --> 01:30:17,150
system for all possible crimes in the US.

1818
01:30:17,150 --> 01:30:19,980
One copy goes to your grade school,

1819
01:30:19,980 --> 01:30:22,390
to the high school, to the college, to the

1820
01:30:22,390 --> 01:30:25,720
employer, the military. Like a horrific

1821
01:30:25,720 --> 01:30:28,220
future, although, I have to say there are

1822
01:30:28,220 --> 01:30:30,410
many in the Biotech industry and the

1823
01:30:30,410 --> 01:30:32,210
medical professions that think that's

1824
01:30:32,210 --> 01:30:34,370
a terrific future.

1825
01:30:34,370 --> 01:30:36,450
(Narrator) In fact, a lot of the 
technology

1826
01:30:36,450 --> 01:30:40,450
already exists now, today.

1827
01:30:40,450 --> 01:30:42,560
These guys in the funny suits are making

1828
01:30:42,560 --> 01:30:46,030
"gene chips". The little needles are

1829
01:30:46,030 --> 01:30:49,020
dropping tiny, nearly invisible, bits of

1830
01:30:49,020 --> 01:30:53,320
DNA onto glass slides. And where do the

1831
01:30:53,320 --> 01:30:56,540
DNA come from? From babies. Thousands

1832
01:30:56,540 --> 01:31:02,180
of them. Each chip can support 80,000 DNA
tests.

1833
01:31:03,738 --> 01:31:05,428
Mark Schena - So, a single chip, in

1834
01:31:05,428 --> 01:31:08,048
principle, will allow you to test, say,

1835
01:31:08,048 --> 01:31:11,128
1,000 babies for 80 different human

1836
01:31:11,128 --> 01:31:13,788
diseases. So, within a few minutes, you

1837
01:31:13,788 --> 01:31:15,908
can have a readout for thousands, or even

1838
01:31:15,908 --> 01:31:19,548
tens-of-thousands of babies in a single
experiment.

1839
01:31:19,548 --> 01:31:21,628
(Narrator) Already, babies are routinely

1840
01:31:21,628 --> 01:31:23,838
tested for a handful of diseases, but with

1841
01:31:23,838 --> 01:31:26,318
gene chips, everybody could be tested for

1842
01:31:26,318 --> 01:31:29,188
hundreds of conditions.

1843
01:31:29,188 --> 01:31:31,168
Mark - Knowing is great. Knowing early is

1844
01:31:31,168 --> 01:31:35,168
even better. And that's really what the
technology allows us to do.

1845
01:31:36,023 --> 01:31:38,083
(Narrator) Well, taking a test and knowing

1846
01:31:38,083 --> 01:31:40,293
is great for the baby, anybody really,

1847
01:31:40,293 --> 01:31:42,293
as long as there's something you can do

1848
01:31:42,293 --> 01:31:43,613
about it.

1849
01:31:43,613 --> 01:31:45,533
Narrator - But think about this, because

1850
01:31:45,533 --> 01:31:48,453
sometimes there may be a test, but it

1851
01:31:48,453 --> 01:31:53,473
might take 20 years, or 50 years, 50 years

1852
01:31:53,473 --> 01:31:55,843
to find a cure. So, you could take the

1853
01:31:55,843 --> 01:31:57,933
tests, and you could learn that there is

1854
01:31:57,933 --> 01:32:00,053
a disease coming your way, but you can't

1855
01:32:00,053 --> 01:32:02,643
do a thing about it. Do you still wanna

1856
01:32:02,643 --> 01:32:05,133
know? Or, you could take the test, but

1857
01:32:05,133 --> 01:32:07,693
the test won't say that you're going to

1858
01:32:07,693 --> 01:32:10,083
get the disease. It will simply say that

1859
01:32:10,083 --> 01:32:14,083
you may get a disease. And, as you know,

1860
01:32:14,083 --> 01:32:15,843
there is a big difference between

1861
01:32:15,843 --> 01:32:19,843
"you will" and "you may".

1862
01:32:19,843 --> 01:32:23,303
(women talking in distance)

1863
01:32:23,303 --> 01:32:25,343
(Narrator) Lisa Capos and Lori Segal are

1864
01:32:25,343 --> 01:32:27,283
sisters who shared the wrenching

1865
01:32:27,283 --> 01:32:31,003
experience of cancer in the family. Way

1866
01:32:31,003 --> 01:32:34,033
back, there was three sisters in 1979.

1867
01:32:34,033 --> 01:32:36,133
The youngest of the three, Melanie, was

1868
01:32:36,133 --> 01:32:39,133
diagnosed with ovarian cancer.

1869
01:32:39,133 --> 01:32:41,263
(Lisa) When my sister was diagnosed, my

1870
01:32:41,263 --> 01:32:44,383
response was disbelief. She was

1871
01:32:44,383 --> 01:32:48,543
Lisa - 30 years old, and I'd never known

1872
01:32:48,543 --> 01:32:52,543
anybody of that age to have ovarian
cancer.

1873
01:32:52,543 --> 01:32:54,323
(Narrator) Melanie fought her cancer

1874
01:32:54,323 --> 01:32:58,713
for four years, but died in 1983.

1875
01:32:58,713 --> 01:33:01,023
It seemed an isolated piece of bad luck,

1876
01:33:01,023 --> 01:33:03,643
but then, just about a year later, Lisa

1877
01:33:03,643 --> 01:33:06,933
discovered that she had breast cancer.

1878
01:33:06,933 --> 01:33:09,793
She was only 34, but the cancer hadn't

1879
01:33:09,793 --> 01:33:12,013
spread, so the long-term outlook seemed

1880
01:33:12,013 --> 01:33:14,673
optimistic.

1881
01:33:14,673 --> 01:33:16,313
Lisa - I actually had a radiation

1882
01:33:16,313 --> 01:33:20,313
therapist, who was, tops in the field.

1883
01:33:20,313 --> 01:33:24,213
Wrote many books on breast cancer, and

1884
01:33:24,213 --> 01:33:27,923
was very optimistic. And what I remember

1885
01:33:27,923 --> 01:33:30,443
him saying was that he and I would grow

1886
01:33:30,443 --> 01:33:32,783
old together.

1887
01:33:32,783 --> 01:33:35,903
(Narrator) And Lisa was fine for 12 years,

1888
01:33:35,903 --> 01:33:37,823
and then she found another lump in the

1889
01:33:37,823 --> 01:33:39,663
same breast.

1890
01:33:39,663 --> 01:33:43,663
Lisa - It was the worst fear come true.

1891
01:33:43,663 --> 01:33:47,963
The first time I could hold onto hope,

1892
01:33:47,963 --> 01:33:49,963
the second time nobody was talking

1893
01:33:49,963 --> 01:33:53,963
with me about living to be old.

1894
01:33:53,963 --> 01:33:55,683
(Narrator) When Lisa discovered her

1895
01:33:55,683 --> 01:33:58,523
second cancer in 1996, scientists were

1896
01:33:58,523 --> 01:34:00,403
just beginning to work out the link

1897
01:34:00,403 --> 01:34:02,433
between breast and ovarian cancers

1898
01:34:02,433 --> 01:34:04,043
that run in families.

1899
01:34:05,453 --> 01:34:07,773
Mary Claire King was one of the scientists

1900
01:34:07,773 --> 01:34:09,753
who discovered the changes, or mutations

1901
01:34:09,753 --> 01:34:12,433
in two specific genes make a woman's

1902
01:34:12,433 --> 01:34:14,593
risk of breast and ovarian cancer much

1903
01:34:14,593 --> 01:34:18,363
higher. The genes are called, "BRCA-1" and

1904
01:34:18,363 --> 01:34:20,523
"BRCA-2"

1905
01:34:20,523 --> 01:34:23,193
Mary - BRCA-1 and BRCA-2 are perfectly

1906
01:34:23,193 --> 01:34:26,853
healthy, normal genes that all of us have.

1907
01:34:26,853 --> 01:34:28,983
But in a few families, mutations in these

1908
01:34:28,983 --> 01:34:32,503
genes are inherited.

1909
01:34:32,503 --> 01:34:34,723
(Narrator) - So, in a normal gene, we're

1910
01:34:34,723 --> 01:34:36,793
gonna spell it out for you here, letter by

1911
01:34:36,793 --> 01:34:38,673
letter, this is the normal sequence

1912
01:34:38,673 --> 01:34:46,543
ending, "GTAGCAGT". Now, we're gonna make

1913
01:34:46,543 --> 01:34:50,983
a copy. Now, we're gonna lose two of the

1914
01:34:50,983 --> 01:34:53,723
letters, just two, and then see, watch

1915
01:34:53,723 --> 01:34:55,883
them shift over. You see that? This new

1916
01:34:55,883 --> 01:34:58,063
configuration is a mutation which can

1917
01:34:58,063 --> 01:35:00,663
often cause breast cancer.

1918
01:35:00,663 --> 01:35:02,773
Mary - In the United States and Western

1919
01:35:02,773 --> 01:35:05,803
Europe, and Canada, the risk of developing

1920
01:35:05,803 --> 01:35:07,893
breast cancer for women in the population

1921
01:35:07,893 --> 01:35:11,133
as a whole, is about 10% over the course

1922
01:35:11,133 --> 01:35:13,223
of her lifetime. With, of course, most of

1923
01:35:13,223 --> 01:35:15,623
that risk occurring later in her life.

1924
01:35:15,623 --> 01:35:18,013
For a woman with a mutation in BRCA-1 or

1925
01:35:18,013 --> 01:35:20,633
BRCA-2, the lifetime risk of breast cancer

1926
01:35:20,633 --> 01:35:24,633
is about 80%. It's very high.

1927
01:35:25,020 --> 01:35:27,200
(Narrator) Right around the time of Lisa's

1928
01:35:27,200 --> 01:35:29,420
second bout of breast cancer, a test for

1929
01:35:29,420 --> 01:35:32,660
BRCA mutations became available. Lisa and

1930
01:35:32,660 --> 01:35:36,250
her sister, Lori, decided to be tested.

1931
01:35:36,250 --> 01:35:38,510
(Lori) I do remember the day that I went

1932
01:35:38,510 --> 01:35:41,190
to find out the results.

1933
01:35:41,190 --> 01:35:44,410
Lori - Panic, terror. I mean, what was I

1934
01:35:44,410 --> 01:35:50,830
gonna find out? Talking about the blood

1935
01:35:50,830 --> 01:35:52,810
surging through your temples, I mean

1936
01:35:52,810 --> 01:35:56,810
I just remember sheer terror.

1937
01:35:56,810 --> 01:35:59,530
(Narrator) Turns out, Lori was fine, but

1938
01:35:59,530 --> 01:36:02,110
Lisa discovered that she does carry a

1939
01:36:02,110 --> 01:36:06,890
BRCA mutation. It is not easy waking

1940
01:36:06,890 --> 01:36:08,990
up every morning, wondering if today's

1941
01:36:08,990 --> 01:36:11,390
the day you may get sick.

1942
01:36:11,390 --> 01:36:13,550
(Doctor) Any questions about the results

1943
01:36:13,550 --> 01:36:16,190
from the biopsy from April?

1944
01:36:16,190 --> 01:36:19,080
Lisa - No questions about the results,

1945
01:36:19,080 --> 01:36:21,120
again it feels like often my life is

1946
01:36:21,120 --> 01:36:23,720
dodging bullets...

1947
01:36:24,627 --> 01:36:26,557
(Narrator) With the second cancer, Lisa

1948
01:36:26,557 --> 01:36:29,027
had her right breast completely removed.

1949
01:36:29,027 --> 01:36:31,137
And then another operation to take out her

1950
01:36:31,137 --> 01:36:32,997
ovaries.

1951
01:36:32,997 --> 01:36:35,137
(Nurse) Just make a tight fist until I'm 
in.

1952
01:36:35,137 --> 01:36:40,167
(Narrator) She also has a high risk of
cancer in her left breast. BRCA mutations

1953
01:36:40,167 --> 01:36:42,627
are relatively rare, and only cause maybe

1954
01:36:42,627 --> 01:36:45,957
only 5 or 10% of all breast cancer.

1955
01:36:45,957 --> 01:36:48,487
But knowing that there's a BRCA mutation

1956
01:36:48,487 --> 01:36:52,087
in the family affects everybody.

1957
01:36:52,087 --> 01:36:54,697
(Man) The gene doesn't go away. The time

1958
01:36:54,697 --> 01:36:57,477
passed since the last cancer doesn't buy

1959
01:36:57,477 --> 01:36:59,137
you the safety.

1960
01:36:59,137 --> 01:37:02,627
Man - And, the consequences run through

1961
01:37:02,627 --> 01:37:07,867
the family. And, I suppose, that, for my

1962
01:37:07,867 --> 01:37:11,207
daughter, who yet has not shown any

1963
01:37:11,207 --> 01:37:18,837
significant impact of this. The knowledge

1964
01:37:18,837 --> 01:37:20,817
that there's a genetic component that she

1965
01:37:20,817 --> 01:37:26,017
can't deny. Will, I'm sure, color her life

1966
01:37:26,017 --> 01:37:29,467
in serious ways.

1967
01:37:29,467 --> 01:37:31,927
(Narrator) Lisa's son, Justin, is 21. Her

1968
01:37:31,927 --> 01:37:35,927
daughter, Alana is 18. There is a 50/50

1969
01:37:35,927 --> 01:37:37,987
chance that each of them has inherited

1970
01:37:37,987 --> 01:37:41,177
the BRCA mutation from Lisa. The only way

1971
01:37:41,177 --> 01:37:44,057
to know, would be to take a test.

1972
01:37:44,057 --> 01:37:46,967
And when should they do that? When is the

1973
01:37:46,967 --> 01:37:48,847
right time?

1974
01:37:48,847 --> 01:37:52,667
Alana - I actually never really thought
about it until biology this year, when my

1975
01:37:52,667 --> 01:37:56,667
teacher posed a hypothetical, supposedly,
question to people saying, "What would

1976
01:37:56,667 --> 01:38:00,417
you do? Can you imagine what you would
do if you were faced with a situation

1977
01:38:00,417 --> 01:38:05,717
where you knew that you might have this
disease that would be deadly, or cause

1978
01:38:05,717 --> 01:38:08,217
you to be sick? And you could do a test

1979
01:38:08,217 --> 01:38:10,527
to find out whether or not you had it."

1980
01:38:10,527 --> 01:38:12,847
And I was sitting there in class saying,

1981
01:38:12,847 --> 01:38:15,237
"Maybe it's not so hypothetical."

1982
01:38:15,237 --> 01:38:19,237
(Narrator) And then in her senior year of
highschool, Alana felt a lump in her own

1983
01:38:19,237 --> 01:38:20,597
breast.

1984
01:38:20,597 --> 01:38:24,597
(Alana) I did have the, "Oh, it can't be
happening to me. Not yet." kind of thing.

1985
01:38:24,597 --> 01:38:26,607
I mean, I have the reservation in the

1986
01:38:26,607 --> 01:38:29,567
back of my mind
Alana - that eventually it may very well

1987
01:38:29,567 --> 01:38:32,207
happen to me. And, if it does, I'll fight

1988
01:38:32,207 --> 01:38:34,487
it then. I'll deal with it then, but I

1989
01:38:34,487 --> 01:38:36,917
don't expect, or I definitely didn't

1990
01:38:36,917 --> 01:38:38,917
expect for this to be happening to me

1991
01:38:38,917 --> 01:38:42,917
when I was 17 years old.

1992
01:38:44,134 --> 01:38:46,694
(Narrator) Alana's lump was not cancer.

1993
01:38:46,694 --> 01:38:48,774
And for now, she doesn't want the test.

1994
01:38:48,774 --> 01:38:50,794
Because, if she knew that she had the bad

1995
01:38:50,794 --> 01:38:52,954
gene, she'd only have two options:

1996
01:38:52,954 --> 01:38:54,914
The choice of removing her breasts and

1997
01:38:54,914 --> 01:38:57,334
ovaries to try to reduce her risk. Or just

1998
01:38:57,334 --> 01:39:01,334
to be closely monitored, and wait.

1999
01:39:01,334 --> 01:39:04,164
Lisa - She's followed every year. Seems

2000
01:39:04,164 --> 01:39:08,624
a little young to, ya know, have her have

2001
01:39:08,624 --> 01:39:10,734
to face that. On the other hand, it also

2002
01:39:10,734 --> 01:39:12,704
feels like the belt-and-suspenders

2003
01:39:12,704 --> 01:39:14,984
technique, and we just have to do

2004
01:39:14,984 --> 01:39:18,594
everything we can do.

2005
01:39:18,594 --> 01:39:20,404
(Narrator) In the next 20 years, this

2006
01:39:20,404 --> 01:39:23,834
family's predicament will become more
and more common as more and more

2007
01:39:23,834 --> 01:39:27,834
genes are linked to more and more diseases
and more tests become available. But we

2008
01:39:27,834 --> 01:39:32,274
will all have to ask, "Do we want to 
know?"

2009
01:39:32,274 --> 01:39:34,854
And, when we know, can we live with an

2010
01:39:34,854 --> 01:39:40,384
answer that says, "Maybe... but maybe
not?"

2011
01:39:40,384 --> 01:39:42,544
(Lisa) Driving home from work today, I was

2012
01:39:42,544 --> 01:39:45,504
tuned into public radio. And there was a

2013
01:39:45,504 --> 01:39:47,904
professor of astronomy talking about a

2014
01:39:47,904 --> 01:39:49,884
brand new telescope to look into the

2015
01:39:49,884 --> 01:39:53,324
galaxies. And they're calling it the

2016
01:39:53,324 --> 01:39:57,324
equivalent of The Human Genome Project.

2017
01:39:57,324 --> 01:39:59,964
And I was thinking, "Hmm, not quite the

2018
01:39:59,964 --> 01:40:01,924
equivalent of The Human Genome Project."

2019
01:40:01,924 --> 01:40:05,284
because it's without some of the ethical,

2020
01:40:05,284 --> 01:40:09,924
moral angst, real-people issues, where,

2021
01:40:09,924 --> 01:40:11,984
it's a bit of a roller-coaster ride

2022
01:40:11,984 --> 01:40:14,724
between, ya know, this is gonna hold

2023
01:40:14,724 --> 01:40:16,774
answers, and hope, and treatments,

2024
01:40:16,774 --> 01:40:20,774
and interventions, and cure versus - it's

2025
01:40:20,774 --> 01:40:24,774
not clear what this all means.

2026
01:40:27,419 --> 01:40:29,739
(Narrator) And if things aren't clear now,

2027
01:40:29,739 --> 01:40:31,579
what about the future when we may not

2028
01:40:31,579 --> 01:40:35,219
only cure disease but do so much more.

2029
01:40:35,219 --> 01:40:39,219
(Doctor) Your extracted eggs are, Marie,

2030
01:40:39,219 --> 01:40:44,819
have been fertilized with Antonio's sperm.

2031
01:40:44,819 --> 01:40:47,549
You have specified Hazel eyes, dark hair,

2032
01:40:47,549 --> 01:40:51,139
and fair skin. All that remains is to

2033
01:40:51,139 --> 01:40:54,549
select the most compatible candidate.

2034
01:40:54,549 --> 01:40:56,549
I've taken the liberty of eradicating any

2035
01:40:56,549 --> 01:41:00,729
potentially prejudicial condition.
Premature baldness, myopia, alcoholism,

2036
01:41:00,729 --> 01:41:03,409
obesity, and so...
Woman - We didn't want... I mean...

2037
01:41:03,409 --> 01:41:06,619
diseases, yes, but um..
Man - Right, we were just wondering

2038
01:41:06,619 --> 01:41:08,699
if, if it's good to just leave a few

2039
01:41:08,699 --> 01:41:11,429
things to chance.
Doctor - We want to give your child the

2040
01:41:11,429 --> 01:41:13,619
best possible start.

2041
01:41:13,619 --> 01:41:16,139
Keep in mind, this child is still you.

2042
01:41:16,139 --> 01:41:19,109
Simply the best of you. You could

2043
01:41:19,109 --> 01:41:21,249
conceive naturally a thousand times and

2044
01:41:21,249 --> 01:41:24,409
never get such a result.

2045
01:41:24,409 --> 01:41:26,169
(Francis) GATTACA really raised some

2046
01:41:26,169 --> 01:41:28,409
interesting points. The technology that's

2047
01:41:28,409 --> 01:41:30,989
being described there is, in fact, right

2048
01:41:30,989 --> 01:41:33,839
in front of us or almost in front of us.

2049
01:41:33,839 --> 01:41:35,499
Narrator - That seems to me almost

2050
01:41:35,499 --> 01:41:37,429
extremely likely to happen. Cause, what

2051
01:41:37,429 --> 01:41:40,009
parent wouldn't want.. ya know, to

2052
01:41:40,009 --> 01:41:41,769
introduce a child that wouldn't have,

2053
01:41:41,769 --> 01:41:43,569
at least, be where all the other kids

2054
01:41:43,569 --> 01:41:44,429
could be?

2055
01:41:44,429 --> 01:41:48,229
Francis - That's why this scenario is
chilling. It portrayed a society where

2056
01:41:48,229 --> 01:41:50,879
genetic determinism had basically run

2057
01:41:50,879 --> 01:41:53,839
wild. I think society, in general, has

2058
01:41:53,839 --> 01:41:55,839
smiled upon the use of genetics for

2059
01:41:55,839 --> 01:41:57,909
preventing terrible diseases. But, when

2060
01:41:57,909 --> 01:41:59,969
you begin to blur that boundary of making

2061
01:41:59,969 --> 01:42:02,329
your kids genetically different, in a way

2062
01:42:02,329 --> 01:42:04,629
that enhances their performance in some

2063
01:42:04,629 --> 01:42:08,629
way, that starts to make most of us 
uneasy.

2064
01:42:09,872 --> 01:42:11,842
(Narrator) What if we lived in the world

2065
01:42:11,842 --> 01:42:15,842
of Star Trek Voyager? Talk about uneasy.

2066
01:42:16,263 --> 01:42:18,783
Actress - Computer, access Belana Toras'

2067
01:42:18,783 --> 01:42:19,903
medical file.

2068
01:42:19,903 --> 01:42:22,123
(Narrator) Lieutenant Toras is 50% human

2069
01:42:22,123 --> 01:42:25,203
and 50% Klingon.
Actress - Project a holographic image of

2070
01:42:25,203 --> 01:42:29,203
the baby.
(Narrator) She's also 100% pregnant.

2071
01:42:29,715 --> 01:42:32,105
Actress - Now extrapolate what the child's

2072
01:42:32,105 --> 01:42:35,625
facial features will look like at 12 years
old.

2073
01:42:35,625 --> 01:42:37,465
(Narrator) Like any caring parent, she

2074
01:42:37,465 --> 01:42:39,655
doesn't want her child to be teased. For

2075
01:42:39,655 --> 01:42:42,545
having a forehead that looks like... well,

2076
01:42:42,545 --> 01:42:45,385
like a tire tread.
Actress - Display the fetus genome.

2077
01:42:45,385 --> 01:42:49,385
Delete the following gene sequences.
(Narrator) But here's the twist...

2078
01:42:49,385 --> 01:42:51,935
She can do something about it.

2079
01:42:51,935 --> 01:42:53,685
Actress - Extrapolate what the child

2080
01:42:53,685 --> 01:42:57,685
would look like with those genetic
changes.

2081
01:42:57,685 --> 01:43:00,305
(Narrator) Hmm, she threw in some blonde
(music playing)

2082
01:43:00,305 --> 01:43:03,375
hair, too.


2083
01:43:03,375 --> 01:43:05,595
And is this limit? Or, could we go even

2084
01:43:05,595 --> 01:43:08,615
further?
Actress - Save changes.

2085
01:43:08,615 --> 01:43:10,935
Narrator - If you can eventually isolate

2086
01:43:10,935 --> 01:43:14,055
all of these things, can you then build a

2087
01:43:14,055 --> 01:43:17,475
creature that has never existed before?

2088
01:43:17,475 --> 01:43:20,155
For example, I would like the eyesight of

2089
01:43:20,155 --> 01:43:22,535
a hawk. And I'd like the hearing of a dog.

2090
01:43:22,535 --> 01:43:24,455
Otherwise, I'm quite content exactly how

2091
01:43:24,455 --> 01:43:27,425
I am. So, could I pluck the eyesight and

2092
01:43:27,425 --> 01:43:30,135
the hearing and patch it in?

2093
01:43:30,135 --> 01:43:32,065
Eric - Well, we don't know. We really

2094
01:43:32,065 --> 01:43:36,065
don't know how that engineering occurs

2095
01:43:36,065 --> 01:43:37,825
and how we can improve on it. It'd be

2096
01:43:37,825 --> 01:43:40,585
very much like getting a pile of parts to

2097
01:43:40,585 --> 01:43:43,865
a Boeing 777, and a whole pile of parts

2098
01:43:43,865 --> 01:43:46,575
to an Airbus, and saying, "Well, I'm gonna

2099
01:43:46,575 --> 01:43:48,375
mix and match some of these, so it'll

2100
01:43:48,375 --> 01:43:52,235
have some of the properties... I'll make
it a little fatter, but I also wanna make

2101
01:43:52,235 --> 01:43:55,975
it a little shorter." By the time you were
done, you'd think you'd made lots of

2102
01:43:55,975 --> 01:43:59,735
clever improvements, but the thing
wouldn't get off the ground. It's a very

2103
01:43:59,735 --> 01:44:02,095
complex machine, and going in with a

2104
01:44:02,095 --> 01:44:04,935
monkey wrench to change a piece, odds

2105
01:44:04,935 --> 01:44:06,985
are, most changes we would make today,

2106
01:44:06,985 --> 01:44:10,985
almost ALL changes we'd make today would
break the machine.

2107
01:44:10,985 --> 01:44:14,845
(Narrator) We may not be able to
genetically modify humans or klingons,

2108
01:44:14,845 --> 01:44:17,825
yet. But we do do it to plants and animals

2109
01:44:17,825 --> 01:44:20,175
everyday. Look at this stuff, tobacco

2110
01:44:20,175 --> 01:44:23,415
plants with a gene from a firefly. And

2111
01:44:23,415 --> 01:44:25,965
they use that same insect gene to create

2112
01:44:25,965 --> 01:44:27,845
glowing mice.

2113
01:44:27,845 --> 01:44:29,925
Narrator - So, it's theoretically possible

2114
01:44:29,925 --> 01:44:32,115
that we could create humans with other

2115
01:44:32,115 --> 01:44:34,015
advantages that borrowed from other

2116
01:44:34,015 --> 01:44:36,425
creatures?
Eric - That's right, but the humility of

2117
01:44:36,425 --> 01:44:40,365
science right now is to appreciate how
little we know about how you could

2118
01:44:40,365 --> 01:44:43,125
even begin to go about that. That is the

2119
01:44:43,125 --> 01:44:45,155
difference between 20th century and

2120
01:44:45,155 --> 01:44:48,345
21st century biology, is, it's now our job

2121
01:44:48,345 --> 01:44:50,465
in this century to figure out how the

2122
01:44:50,465 --> 01:44:54,465
parts fit together.
(music playing)

2123
01:44:55,723 --> 01:44:57,763
(Narrator) And just as the 20th century

2124
01:44:57,763 --> 01:45:00,163
was winding down, the race to finish the

2125
01:45:00,163 --> 01:45:02,863
genome was full throttle. The competitive

2126
01:45:02,863 --> 01:45:05,973
juices were flowing.

2127
01:45:05,973 --> 01:45:09,973
Venter - I am competitive, but, when the

2128
01:45:09,973 --> 01:45:12,023
social order doesn't allow you to make

2129
01:45:12,023 --> 01:45:15,443
progress, and it doesn't for most people,

2130
01:45:15,443 --> 01:45:17,903
I said, "To hell with the social order,

2131
01:45:17,903 --> 01:45:20,673
I'll find a new way to do it."

2132
01:45:20,673 --> 01:45:22,713
(Tony White) It changed the paradigm on

2133
01:45:22,713 --> 01:45:25,343
people, and people don't like that.

2134
01:45:25,343 --> 01:45:27,143
Tony - It was very offensive to these

2135
01:45:27,143 --> 01:45:28,823
people. "How dare they?" Ya know,

2136
01:45:28,823 --> 01:45:31,323
rain on our parade, this is our turf.

2137
01:45:31,323 --> 01:45:35,603
Eric - This was a challenge to the whole
idea of public generation of data. That's

2138
01:45:35,603 --> 01:45:38,693
what offended people, was that we really

2139
01:45:38,693 --> 01:45:40,933
felt deeply that these were data that had

2140
01:45:40,933 --> 01:45:42,933
to be available for everybody. And there

2141
01:45:42,933 --> 01:45:44,623
was an attempt to claim the public

2142
01:45:44,623 --> 01:45:47,063
imagination for the proposition that

2143
01:45:47,063 --> 01:45:49,143
these data were better done in some

2144
01:45:49,143 --> 01:45:51,043
private fashion and owned.

2145
01:45:51,043 --> 01:45:54,853
Tony - You wanna say, "Well, wait a
minute. Ya know, if you could do it in

2146
01:45:54,853 --> 01:45:58,273
two years, why weren't ya doing it in
two years? Why do we have to come

2147
01:45:58,273 --> 01:46:01,133
along to turn a 15 year project into a
two year project?"

2148
01:46:01,133 --> 01:46:04,833
Eric - I must say that The Human Genome
Project had a tremendous amount of

2149
01:46:04,833 --> 01:46:08,833
internal competition, even amongst the
academic groups. There's competition

2150
01:46:08,833 --> 01:46:11,333
amongst academic scientists, to be sure.

2151
01:46:11,333 --> 01:46:13,233
And more than anything, there's

2152
01:46:13,233 --> 01:46:16,893
competition against disease. There's a

2153
01:46:16,893 --> 01:46:19,513
strong sense that what we're trying

2154
01:46:19,513 --> 01:46:21,453
to find out is the most important

2155
01:46:21,453 --> 01:46:24,653
information that you could possibly get.

2156
01:46:24,653 --> 01:46:27,833
Tony - I don't know, I mean, I hope that
this will all go away.

2157
01:46:27,833 --> 01:46:31,023
(Narrator) In June of 2000, it kind of did

2158
01:46:31,023 --> 01:46:35,023
go away.
(orchestral music playing)

2159
01:46:39,474 --> 01:46:41,754
The contentious race to finish the genome

2160
01:46:41,754 --> 01:46:44,494
came to an end.
(Announcer) Ladies and gentlemen, the

2161
01:46:44,494 --> 01:46:47,374
President of the United States.

2162
01:46:47,374 --> 01:46:50,254
(Narrator) And the winner was...

2163
01:46:50,254 --> 01:46:52,414
Well, you probably heard, they decided

2164
01:46:52,414 --> 01:46:54,544
to call it a tie.

2165
01:46:54,544 --> 01:46:56,454
(Francis) I think both Craig and I were

2166
01:46:56,454 --> 01:46:59,154
really tired of the way in which the

2167
01:46:59,154 --> 01:47:02,224
representations had played out and wanted

2168
01:47:02,224 --> 01:47:05,904
to see that sort of put behind us. It was

2169
01:47:05,904 --> 01:47:08,554
probably not good for Celera, as a

2170
01:47:08,554 --> 01:47:11,474
business to have this image of being

2171
01:47:11,474 --> 01:47:13,444
sort of always in contention with the

2172
01:47:13,444 --> 01:47:15,364
public project. It certainly wasn't good

2173
01:47:15,364 --> 01:47:17,304
for the public project to be seen as

2174
01:47:17,304 --> 01:47:20,644
battling with the private sector
enterprise.

2175
01:47:21,647 --> 01:47:23,577
(Narrator) President Clinton, himself,

2176
01:47:23,577 --> 01:47:25,987
got the public guys and the Celera guys

2177
01:47:25,987 --> 01:47:28,667
to play nice, shake hands, and share

2178
01:47:28,667 --> 01:47:32,667
credit for sequencing the genome.
(clapping)

2179
01:47:36,503 --> 01:47:38,423
President Clinton - Nearly two centuries

2180
01:47:38,423 --> 01:47:44,723
ago, in this room, on this floor, Thomas

2181
01:47:44,723 --> 01:47:47,943
Jefferson and a trusted aid spread out a

2182
01:47:47,943 --> 01:47:51,683
magnificent map. The aid was Merryweather

2183
01:47:51,683 --> 01:47:54,093
Louis and the map was the product of his

2184
01:47:54,093 --> 01:47:57,033
courageous expedition across the American

2185
01:47:57,033 --> 01:48:00,813
frontier, all the way to the Pacific.

2186
01:48:00,813 --> 01:48:03,223
Today, the world is joining us here in the

2187
01:48:03,223 --> 01:48:06,053
East Room, to behold a map of even greater

2188
01:48:06,053 --> 01:48:09,053
significance. We are here to celebrate the

2189
01:48:09,053 --> 01:48:11,773
completion of the first survey of the

2190
01:48:11,773 --> 01:48:14,673
entire human genome. Without a doubt,

2191
01:48:14,673 --> 01:48:16,593
this is the most important, most

2192
01:48:16,593 --> 01:48:20,593
wondrous map ever produced by humankind.

2193
01:48:21,667 --> 01:48:23,427
(Narrator) And what does this map the

2194
01:48:23,427 --> 01:48:25,367
President is talking about, what does it

2195
01:48:25,367 --> 01:48:26,237
look like?

2196
01:48:26,237 --> 01:48:27,927
Narrator - When we look across the

2197
01:48:27,927 --> 01:48:30,137
landscape of our DNA for the 30,000 genes

2198
01:48:30,137 --> 01:48:32,597
that make up a human-being, what do we

2199
01:48:32,597 --> 01:48:33,587
see?

2200
01:48:33,587 --> 01:48:36,747
Eric - The genome is very lumpy.
Narrator - Very lumpy?

2201
01:48:36,747 --> 01:48:39,507
Eric - Very lumpy, very uneven. You might

2202
01:48:39,507 --> 01:48:41,617
think if we have 30,000 genes they're

2203
01:48:41,617 --> 01:48:43,537
distributed kind of uniformly across the

2204
01:48:43,537 --> 01:48:46,017
chromosomes. Not so.

2205
01:48:46,017 --> 01:48:48,317
(music playing)

2206
01:48:48,317 --> 01:48:50,347
(Eric) They're distributed like people are

2207
01:48:50,347 --> 01:48:53,307
distributed in America. They're all

2208
01:48:53,307 --> 01:48:55,867
bunched up in some places, and then you

2209
01:48:55,867 --> 01:48:58,077
have vast plains that don't have a lot of

2210
01:48:58,077 --> 01:49:00,597
people in them.
(car horn honking)

2211
01:49:00,597 --> 01:49:04,217
It's like that with the genes.

2212
01:49:04,217 --> 01:49:05,977
(music playing)

2213
01:49:05,977 --> 01:49:08,517
(Eric) There are really gene-dense regions

2214
01:49:08,517 --> 01:49:11,077
that might have 15 times the density of

2215
01:49:11,077 --> 01:49:15,077
genes. Sort of a New York City over here.

2216
01:49:15,077 --> 01:49:19,077
(music playing)

2217
01:49:19,813 --> 01:49:21,593
(Eric) And there are other regions that

2218
01:49:21,593 --> 01:49:23,913
might go for two-million letters, and

2219
01:49:23,913 --> 01:49:27,913
there's not a gene to be found in there.

2220
01:49:29,732 --> 01:49:31,442
Eric - The remarkable thing about our

2221
01:49:31,442 --> 01:49:33,242
genome, is how little "gene" there is

2222
01:49:33,242 --> 01:49:35,312
in it. We have three billion letters of

2223
01:49:35,312 --> 01:49:38,822
DNA, but only 1 to 1.5% of it is gene.

2224
01:49:38,822 --> 01:49:40,862
Narrator - 1.5%?

2225
01:49:40,862 --> 01:49:44,682
Eric - The rest of it, 99% of it, is
stuff.

2226
01:49:44,682 --> 01:49:46,582
Narrator - Stuff? This is the technical
term?

2227
01:49:46,582 --> 01:49:48,662
Eric - A technical term. More than half

2228
01:49:48,662 --> 01:49:53,132
of your total DNA is not really yours. It

2229
01:49:53,132 --> 01:49:57,572
consists of selfish DNA elements that

2230
01:49:57,572 --> 01:49:59,812
somehow got into our genomes about

2231
01:49:59,812 --> 01:50:02,132
a billion-and-a-half years ago, and have

2232
01:50:02,132 --> 01:50:04,012
been hopping around making copies of

2233
01:50:04,012 --> 01:50:06,422
themselves. To those selfish DNA elements,

2234
01:50:06,422 --> 01:50:10,482
we're merely a host for them.
Narrator - Wait a second...

2235
01:50:10,482 --> 01:50:12,512
Eric - They view the human being just as a

2236
01:50:12,512 --> 01:50:15,722
vehicle for transmitting themselves.
Narrator - Wait, wait, wait...

2237
01:50:15,722 --> 01:50:19,192
We have, in each and every one of our
cells that carry DNA, we have these

2238
01:50:19,192 --> 01:50:21,862
little... they're not beings, they're just

2239
01:50:21,862 --> 01:50:24,422
hitchhikers...
Eric - Yeah.

2240
01:50:24,422 --> 01:50:26,312
Hitchhiking hunks of DNA.

2241
01:50:26,312 --> 01:50:28,532
Narrator - And they've been in us for how
long?

2242
01:50:28,532 --> 01:50:30,652
Eric - About a billion or a half years
or so.

2243
01:50:30,652 --> 01:50:34,572
Narrator - And all they've done, as far as
you can say, is stay there and multiply?

2244
01:50:34,572 --> 01:50:36,052
Eric - Well, they move around.

2245
01:50:36,052 --> 01:50:37,772
Narrator - And what is that? What do

2246
01:50:37,772 --> 01:50:39,812
you call that? I mean, it's not an animal,

2247
01:50:39,812 --> 01:50:42,202
it's not a vegetable. It's just...

2248
01:50:42,202 --> 01:50:44,212
Eric - It's a gene that knows how to look

2249
01:50:44,212 --> 01:50:46,192
out for itself and nothing else.

2250
01:50:46,192 --> 01:50:48,332
Narrator - And it's just riding around
in us?

2251
01:50:48,332 --> 01:50:52,152
The majority of our genome is this stuff,

2252
01:50:52,152 --> 01:50:54,122
not us.
Narrator - Wow.

2253
01:50:54,122 --> 01:50:56,442
(music playing)

2254
01:50:56,442 --> 01:50:58,212
(Narrator) It is a little humbling to

2255
01:50:58,212 --> 01:51:02,192
think that we, the paragon of animals,

2256
01:51:02,192 --> 01:51:05,322
the architects of great civilizations,

2257
01:51:05,322 --> 01:51:07,422
are used as taxi cabs by a bunch of

2258
01:51:07,422 --> 01:51:09,422
freeloading parasites who could care

2259
01:51:09,422 --> 01:51:12,422
less about us, but, that's the mystery of

2260
01:51:12,422 --> 01:51:16,422
it all.
(lightning)

2261
01:51:16,422 --> 01:51:20,422
(music playing)

2262
01:51:24,704 --> 01:51:26,604
(Eric) - You come away from reading the

2263
01:51:26,604 --> 01:51:28,674
genome, recognizing that we are so

2264
01:51:28,674 --> 01:51:31,434
similar to every other living thing on

2265
01:51:31,434 --> 01:51:32,974
this planet.

2266
01:51:32,974 --> 01:51:36,974
(music playing)

2267
01:51:40,198 --> 01:51:42,648
(birds chirping)

2268
01:51:44,051 --> 01:51:46,731
(Eric) And every innovation in us... we

2269
01:51:46,731 --> 01:51:49,091
didn't really invent it. These were all

2270
01:51:49,091 --> 01:51:51,651
things inherited from our ancestors.

2271
01:51:51,651 --> 01:51:55,651
(music playing)

2272
01:51:57,331 --> 01:51:59,831
(Eric) This gives you a tremendous

2273
01:51:59,831 --> 01:52:03,181
respect for life. It gives you a respect

2274
01:52:03,181 --> 01:52:06,261
for the complexity of life, the innovation

2275
01:52:06,261 --> 01:52:10,261
of life. And the tremendous connectivity

2276
01:52:10,261 --> 01:52:13,171
amongst all life on the planet.

2277
01:52:13,171 --> 01:52:17,171
(music playing)

2278
01:52:21,156 --> 01:52:23,756
(Narrator) We are, in a very real sense,

2279
01:52:23,756 --> 01:52:26,996
ordinary creatures. Our parts are

2280
01:52:26,996 --> 01:52:28,886
interchangeable with all the other

2281
01:52:28,886 --> 01:52:31,996
animals, and even the plants around us.

2282
01:52:31,996 --> 01:52:34,576
And yet, we know that there's something

2283
01:52:34,576 --> 01:52:38,576
about us that is truly extraordinary.

2284
01:52:40,368 --> 01:52:43,338
What it is, we don't know, but what it

2285
01:52:43,338 --> 01:52:46,918
does is, it let's us ask questions and

2286
01:52:46,918 --> 01:52:49,958
investigate, and contemplate the

2287
01:52:49,958 --> 01:52:52,468
messages buried in a molecule shaped

2288
01:52:52,468 --> 01:52:57,198
like a twisted staircase. That's what we,

2289
01:52:57,198 --> 01:53:04,148
and maybe we alone, can do. We can wonder.

2290
01:53:04,148 --> 01:53:08,148
(music playing)

2291
01:53:10,101 --> 01:53:12,071
(Narrator) This program raises many

2292
01:53:12,071 --> 01:53:13,951
difficult questions, and we do want to

2293
01:53:13,951 --> 01:53:16,061
know what you think. So, please logon

2294
01:53:16,061 --> 01:53:18,581
to Nova's website and take our survey.

2295
01:53:18,581 --> 01:53:20,781
Also, you can see how scientists pinpoint

2296
01:53:20,781 --> 01:53:23,511
a gene, find out how sequencing works,

2297
01:53:23,511 --> 01:53:27,511
and more at PBS.org or AmericaOnline,

2298
01:53:27,511 --> 01:53:30,391
keyword: PBS.

2299
01:53:30,391 --> 01:53:34,391
(music playing)

2300
01:53:35,847 --> 01:53:44,087
(music playing)

2301
01:53:46,582 --> 01:53:48,522
(Announcer) To order this show or any

2302
01:53:48,522 --> 01:53:50,972
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2303
01:53:50,972 --> 01:53:54,582
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2304
01:53:54,582 --> 01:53:58,912
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2305
01:53:59,849 --> 01:54:02,809
By inserting just one gene, our food can

2306
01:54:02,809 --> 01:54:06,509
grow bigger, resist disease, and feed the
world.

2307
01:54:06,509 --> 01:54:08,049
(Man) This is a mass genetic

2308
01:54:08,049 --> 01:54:10,789
experiment that's going on in our diet.

2309
01:54:10,789 --> 01:54:12,759
(Announcer) Harvest of Fear, a NOVA

2310
01:54:12,759 --> 01:54:15,299
frontline special report.

2311
01:54:15,299 --> 01:54:19,299
(music playing)

2312
01:54:24,749 --> 01:54:28,749
(Announcer) NOVA is a production of WGBH
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2313
01:54:28,749 --> 01:54:32,749
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2314
01:54:33,373 --> 01:54:35,573
(Announcer) Major funding for NOVA is

2315
01:54:35,573 --> 01:54:38,193
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2316
01:54:38,193 --> 01:54:40,583
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2317
01:54:40,583 --> 01:54:44,583
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2318
01:54:45,972 --> 01:54:48,442
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2319
01:54:48,442 --> 01:54:51,302
is fueled by the simple desire to make

2320
01:54:51,302 --> 01:54:56,702
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2321
01:54:56,702 --> 01:54:58,692
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2322
01:54:58,692 --> 01:55:00,582
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2323
01:55:00,582 --> 01:55:03,902
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2324
01:55:03,902 --> 01:55:06,132
Some people already know, Northwestern

2325
01:55:06,132 --> 01:55:08,052
Mutual can help plan for your children's

2326
01:55:08,052 --> 01:55:10,522
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2328
01:55:13,612 --> 01:55:15,902
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2329
01:55:15,902 --> 01:55:19,642
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2330
01:55:19,642 --> 01:55:23,642
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2331
01:55:23,642 --> 01:55:26,662
And by, the Corporation for Public
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2332
01:55:26,662 --> 01:55:29,132
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2333
01:55:29,132 --> 01:55:33,132
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2334
01:55:33,132 --> 01:55:37,132
(music playing)

2335
01:55:37,132 --> 01:55:40,072
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