I have this very aggressive type of cancer.
It's hard to treat.
Precision medicine.
It's being called the future of healthcare.
It means the right dose, of the right medicine, for the right patient.
A super-targeted approach.
It is really like a heat-seeking missile.
Expectations are sky high for precision medicine,
a new strategy that tailors treatment to individual patients.
You can match a blood transfusion to a blood type.
What if matching a cancer cure to our genetic code was just as standard?
But we've heard these kinds of hopes before,
during the race to sequence the human genome.
The race to crack the human genetic code,
which could lead to life-saving, revolutionary changes.
Medicine will be transformed.
There is at least the potential to reduce the number of cancer deaths to zero
during our lifetimes.
About 30 years ago,
Marston Linehan began searching for a new way to help his patients
with kidney cancer.
Who else in your family had kidney cancer?
There were no effective forms of therapy, no drugs that worked.
I lost every one of these patients who developed advanced disease.
So we wanted to identify a gene for kidney cancer.
And our hope was that if we could understand the gene,
that that might provide the foundation
for effective forms of therapy.
It was the start of the genome age, and scientists around the country
were hunting for disease genes.
We had no idea what a mountain this was to climb.
We set up a whole program.
We analyzed DNA from over 4,000 patients.
It took us nearly 10 years to find that gene.
Then a group of government scientists had a big idea.
Instead of searching for genes one by one, what if they could create a map that would
locate and sequence every gene in our DNA?
People are mostly hoping to see this have some payoff as far as human health.
Led by Francis Collins, the Human Genome Project was the most ambitious
biological research program ever attempted.
It started in 1990 with a 15-year timeline and $3 billion budget.
So the motivation really was to enhance the ability to understand hereditary factors in
all diseases as quickly as possible.
The sorts of traits that affect the vast majority of the population,
heart disease and diabetes, we know precious little about,
and those are really the frontiers of genetic research.
At the beginning, we didn't have anything automated.
This is Exon 5.
This is a family.
Everything was done manually.
We had to do all these chemical reactions one by one by one.
There was radiation involved.
You, like, had to wear protection.
It was horrible.
The genome is made up of about six billion chemical letters.
Collins knew without dramatically improved technology
it would be impossible to read them all.
We were, by 1998, finally where we could see this goal might be achievable.
It was at that point that a separate effort was announced in the private sector.
This is the largest DNA decoding lab in the world by far.
Former National Institutes of Health researcher Craig Venter
spent years trying to speed up gene discovery.
I was the first to make the transition from the old manual way.
My lab had the very first automated DNA sequencers.
His announcement that his company, Celera Genomics,
would sequence the genome before the government shook the scientific world.
It's going to be years, if not a decade faster.
He was using a new approach, called shotgun sequencing,
where the genome is broken up, sequenced and quickly reassembled by a computer.
It's like a jigsaw puzzle with 25,000 pieces.
But we knew how to the pieces together.
Suddenly, it was a competition.
Venter suggested that Collins's team sequence the mouse genome,
leaving humans to him.
Collins refused and said Venter's untested approach
was likely to produce a genome full of gaps or mistakes.
It's not just about science, but also about the race for vast sums of money.
Collins also attacked Celera's plan to sell genome information
and to patent genes, which could make it harder for medical researchers to work on them.
Somebody else who has a great idea about what that gene might do
and a way in which to turn that into a product for public benefit
may be discouraged from doing so.
The tension soon made headlines.
Are you going to win?
We're not going to lose.
Everybody likes a good competition.
It's not often that a small group takes on the whole federal government.
It actually made this effort to sequence the human genome
something that people had heard about.
The greatest human science project ever.
Once it's on the front page of The New York Times that there's a competition
going on, then everybody is like "What's going on there?"
Every day, it's robot versus robot, public computer versus private computer.
Both the public program and Celera were,
you know, in a frantic race of sequencing.
It became clear that the acrimony was only going to grow.
I was starting to become concerned
that this was turning into a mud-wrestling match.
And it was damaging both of them and, of course,
damaging to our program as well.
One of the Genome Project's original architects,
Department of Energy scientist Aristides Patrinos,
arranged months of secret meetings between Venter and Collins,
hoping to make peace.
And on June 26, 2000...
I'm happy that today the only race we are talking about is the human race.
...they presented the genome to the world, together.
In coming years, doctors increasingly will be able to cure diseases like Alzheimer's,
Parkinson's, diabetes and cancer by attacking their genetic roots.
For researchers like Marston Linehan, hoping to use genes to find cures,
it was like striking gold.
The Genome Project gave us the map.
All of a sudden we knew the sequence of every gene.
We didn't have to spend years and years finding them.
That was a huge advantage for us.
But it also made things more complicated.
After finding one kidney cancer gene, he kept finding more and more.
We now know of 16 genes that cause kidney cancer.
We thought kidney cancer was a single disease.
It's not a single disease.
It's a number of different types of cancer that just happen to occur in the kidney.
And who's that?
You?
Alex Dinh was only 34 when he got kidney cancer.
Look, this is when I first came to America.
I was born in Vietnam, and my parents always wanted to give me a better life.
The week that I was diagnosed, we just found out that we were expecting our third kid.
So it was, you know, this week of roller coaster emotion.
I had my left kidney removed,
and then it started to spread to the other side of my abdomen.
So then we said surgery's not an option anymore.
Alex and his wife are doctors.
Wondering why he got cancer so young, they went for genetic testing.
They tested the entire genome and found that I had this one specific mutation.
Rare gene, kidney cancer's rare, I get them both.
Through a friend, Alex heard about Dr. Linehan,
whose lab was using genes to develop treatments for kidney cancer.
Once you discover a cancer gene, we take tumors from patients
and study how the cancer gene works.
And then we work on the development of drugs.
In this case, drugs for the type of tumor Alex has.
And when you go here after treatment...
...all dead.
And if they look good, then we go to clinical trials in patients.
Four years ago, Alex joined one of those trials
for his specific cancer, one of a small,
but growing number of cancers that can be treated with this type of targeted drug.
I'm still able to take care of my family.
I'm still able to work.
I mean, without it I know I wouldn't be here still.
It's all what you might call personalized medicine,
targeting that specific gene mutation
instead of just trying this drug and that drug and this drug.
But critics, like epidemiologist Nigel Paneth,
point out few patients are likely to be as fortunate as Alex.
We haven't yet found very many examples of drug interventions that depend upon genes.
There are one or two here and there.
So in the last 60 or 70 years,
we've added about 10 or 11 years of life expectancy in the U.S.
None of that is due to genetic discovery.
That's because, after years of research,
it turns out the relationship between genes
and most serious health conditions is more complicated than expected.
Heart disease, schizophrenia, some of the common cancers.
There was a hope that while those would not be the result of a single gene,
that they'd be influenced by a short list of genes.
Maybe for diabetes there would be, you know, four or five genes.
We're up to 82.
Each one of which has a very modest effect.
And we didn't know that until we looked.
Francis Collins, whose own lab works on diabetes, still wants to find out
what role genes play in most common diseases.
Francis Collins of NIH here!
As head of the National Institutes of Health, he's helped start a massive new federal
effort, called the Precision Medicine Initiative.
The time is right to unleash a new wave of advances
in this area, in precision medicine.
It will employ dramatic advances in sequencing...
The year Dr. Collins helped sequence the first human genome,
it cost about $100 million,
and today it costs less than $2,000.
...and supercomputers to sift through the genomes
and health records of about a million people
searching for links between genes, the environment and our health.
There are genes and their environment.
And they somehow come together in a way that
causes somebody to become ill or not.
So if we really wanted to get a complete understanding
of what causes diabetes or the common cancers
or Alzheimer's disease or mental illness,
you've got to look at both of those things.
But Collins and the government still have competition.
We're processing on average a complete human genome every 15 minutes.
We set a target goal of trying to get a million genomes by 2020.
Craig Venter now runs Human Longevity,
one of several private companies also analyzing genomes and health data,
hoping to pick up where the original genome sequence left off.
It's just not a direct linear line of
the genome was sequenced, we found this gene and now "X."
And what we're discovering now are the things that occur
maybe once in the human population, out of 10,000 or 20,000.
It's the rare combinations of things that determine our human traits.
But it's hard to know how much impact those discoveries might have.
Huge amounts of data don't guarantee that you will find the things that matter.
In fact, they increase the chances that you will find tiny things,
tiny things that don't matter very much.
It won't be a solution to diabetes, hypertension, heart disease, lung cancer, breast cancer.
Because those are not largely determined by the genetic inheritance we get.
For those who've been part of the genomic revolution...
Without these medicines, I'm sure I wouldn't be alive today.
...there is no question but to push forward.
Well, it's like we're coming out of the Dark Ages.
Medicine's been based on rough symptomology
and a little bit of hocus-pocus, without knowing
the true molecular nature of what's going on.
You know, there's the famous first law of technology,
which is when something truly significant is discovered,
its consequences are always overestimated in the short run
and underestimated in the long run.
I think that's absolutely true for the human genome.