Name: 【TED】John Wilbanks: Let's pool our medical data (John Wilbanks: Let's pool our medical data)
Uploaded: 2017-08-23T18:36:52.000Z
Duration: 16 min 26 s
Description: Thousands of YouTube videos with English-Chinese subtitles! Now you can learn to understand native speakers, expand your vocabulary, and improve your pronunciation...

Translator: Joseph Geni Reviewer: Morton Bast

And every one of us gets sick, and the question really is,

how sick do we get? Is it something that kills us?

And we've gotten sick as long as we've been people.

And so we've always looked for reasons to explain why we get sick.

And for a long time, it was the gods, right?

The gods are angry with me, or the gods are testing me,

And as long as we've looked for explanations,

we've wound up with something that gets closer and closer to science,

which is hypotheses as to why we get sick,

and as long as we've had hypotheses about why we get sick, we've tried to treat it as well.

So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine,"

and the rules he laid out for testing medicines

are actually really similar to the rules we have today,

that the disease and the medicine must be the same strength,

the medicine needs to be pure, and in the end we need

to test it in people. And so if you put together these themes

of a narrative or a hypothesis in human testing,

even when we didn't have very good technologies.

This is a guy named Carlos Finlay. He had a hypothesis

that was way outside the box for his time, in the late 1800s.

He thought yellow fever was not transmitted by dirty clothing.

He thought it was transmitted by mosquitos.

And they laughed at him. For 20 years, they called this guy

"the mosquito man." But he ran an experiment in people,

right? He had this hypothesis, and he tested it in people.

So he got volunteers to go move to Cuba and live in tents

and be voluntarily infected with yellow fever.

So some of the people in some of the tents had dirty clothes

and some of the people were in tents that were full

of mosquitos that had been exposed to yellow fever.

And it definitively proved that it wasn't this magic dust

called fomites in your clothes that caused yellow fever.

But it wasn't until we tested it in people that we actually knew.

And this is what those people signed up for.

This is what it looked like to have yellow fever in Cuba

at that time. You suffered in a tent, in the heat, alone,

And it's not just a cool example of a scientific design

of experiment in theory. They also did this beautiful thing.

They signed this document, and it's called an informed consent document.

And informed consent is an idea that we should be

very proud of as a society, right? It's something that

separates us from the Nazis at Nuremberg,

enforced medical experimentation. It's the idea

that agreement to join a study without understanding isn't agreement.

It's something that protects us from harm, from hucksters,

from people that would try to hoodwink us into a clinical

study that we don't understand, or that we don't agree to.

And so you put together the thread of narrative hypothesis,

experimentation in humans, and informed consent,

and you get what we call clinical study, and it's how we do

the vast majority of medical work. It doesn't really matter

if you're in the north, the south, the east, the west.

Clinical studies form the basis of how we investigate,

so if we're going to look at a new drug, right,

we test it in people, we draw blood, we do experiments,

and we gain consent for that study, to make sure

that we're not screwing people over as part of it.

But the world is changing around the clinical study,

which has been fairly well established for tens of years

So now we're able to gather data about our genomes,

but, as we saw earlier, our genomes aren't dispositive.

We're able to gather information about our environment.

And more importantly, we're able to gather information

about our choices, because it turns out that what we think of

as our health is more like the interaction of our bodies,

our genomes, our choices and our environment.

And the clinical methods that we've got aren't very good

at studying that because they are based on the idea

of person-to-person interaction. You interact

with your doctor and you get enrolled in the study.

So this is my grandfather. I actually never met him,

but he's holding my mom, and his genes are in me, right?

His choices ran through to me. He was a smoker,

So my grandfather's genes go all the way through to him,

and my choices are going to affect his health.

The technology between these two pictures

cannot be more different, but the methodology

for clinical studies has not radically changed over that time period.

The way we gain informed consent was formed in large part

after World War II, around the time that picture was taken.

That was 70 years ago, and the way we gain informed consent,

this tool that was created to protect us from harm,

now creates silos. So the data that we collect

for prostate cancer or for Alzheimer's trials

goes into silos where it can only be used

Subtitles ListPlay Video

【TED】John Wilbanks: Let's pool our medical data (John Wilbanks: Let's pool our medical data)

subtle

significant

grab

vast