Name: 【TED】約翰-威爾班克斯。讓我們彙集我們的醫療數據（John Wilbanks：Let's pool our medical data）。 (【TED】John Wilbanks: Let's pool our medical data (John Wilbanks: Let's pool our medical data))
Uploaded: 2021-01-14T07:27:48.000Z
Duration: 16 min 26 s

Translator: Joseph Geni Reviewer: Morton Bast

譯者: Meilun Shih 審譯者: Yingxue Sun

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

當有人生病時，真正的問題在於，

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

我們病的多嚴重？有可能致命嗎？

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.

於是我們總是在找為什麼會生病的原因。

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

好一段時間以來，都是因為眾神，對吧？

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

眾神對我感到惱怒，或者是眾神在測試我，對嗎？

又或者是到較近期，唯一的，上帝，

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,

找到我們為什麼會生病的假設原因，

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

只要我們有了為什麼會生病的假設原因，就會試圖治療。

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

這位是 Avicenna。一千多年前他寫了一本書 叫《醫典》("The Canon of Medicine")，

and the rules he laid out for testing medicines

are actually really similar to the rules we have today,

其實非常類似我們今日的規則，

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

像是疾病和藥物具有同等強度、

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

藥物必須質純、最後必須進行人體測試。

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.

就算當下並沒有非常先進的技術。

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

有個名叫 Carlos Finlay 的男人，提出了一個假設，

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

對他所處的 19 世紀末來說，是相當先進的。

He thought yellow fever was not transmitted by dirty clothing.

他認為黃熱病不是藉由髒衣物傳染。

He thought it was transmitted by mosquitos.

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

眾人都取笑他。20 年來，人們稱他為

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

「蚊子男」。但他進行了人體試驗，

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

對吧？他提出一個假設，並對它進行人體測試。

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

所以他找了一些自願者搬到古巴，住在帳篷裡，

and be voluntarily infected with yellow fever.

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

其中一些人的帳篷裡有髒衣服、

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

結果無疑地證明了，不是你衣物中

called fomites in your clothes that caused yellow fever.

被稱做汙染物的神秘灰塵，引發了黃熱病的傳染。

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

但直到進行了人體試驗 我們才真正確認這件事。

And this is what those people signed up for.

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

這是當時在古巴罹患黃熱病的樣子。

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

在帳篷中受苦，發高燒，孤單一人，

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

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

科學設計實驗範例， 他們還做了一件了不起的事。

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

他們簽署了這個文件，叫做《受試者同意書》。

And informed consent is an idea that we should be

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

感到自豪的概念，對不對？這是能將我們和

separates us from the Nazis at Nuremberg,

在紐倫堡實行強制醫療實驗的納粹主義

enforced medical experimentation. It's the idea

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

同意參與研究，卻不瞭解研究內容的話，此協定就不成立。

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

這可保護我們不受到傷害、不遭商人欺騙、

from people that would try to hoodwink us into a clinical

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

我們不了解或不同意的臨床研究。

And so you put together the thread of narrative hypothesis,

因此，如果你將各種假設條件集合起來，

experimentation in humans, and informed consent,

進行人體實驗、簽署受試者同意書，

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

你就達到我們所說的臨床研究標準，這也是我們

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

我們進行大量醫療研究的方式。

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

Clinical studies form the basis of how we investigate,

臨床研究構成我們研究的基礎，

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

如果我們要看一種新藥物的效果，

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

我們進行人體測試、抽血、進行實驗、

and we gain consent for that study, to make sure

取得此研究的受試者同意書，以確保

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

But the world is changing around the clinical study,

但是臨床研究的领域有了很大改變，

which has been fairly well established for tens of years

就算它在過去數十年來，就算不到五十或者一百年，

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

我們現在可以蒐集基因組的資料，

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

但是，如同我們剛才所見，我們的基因組是固定的。

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,

我們的健康更像是我們的身體、基因組、

our genomes, our choices and our environment.

我們的選擇、和環境間互動而來的結果。

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

我們現有的臨床方法不是很適合研究，

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.

醫生互動、然後被登記到研究中。

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

這是我的外公，事實上我從未見過他，

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

但他抱著我媽，而且我身上流著他的基因，對吧？

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

他的選擇流到我身上來。他吸菸，

跟很多人一樣。這是我的兒子。

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

所以我外公的基因流到他身上去，

and my choices are going to affect his health.

而我的選擇也將影響他的健康。

The technology between these two pictures

cannot be more different, but the methodology

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

臨床研究的方法並沒有什麼劇烈改變。

The way we gain informed consent was formed in large part

我們取得受試者同意書的方法 大致是在二次世界大戰後形成，

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

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

那是 70 年前，而我們取得受試者同意書的方法，

this tool that was created to protect us from harm,

這個保護我們不受到傷害的同意書，

now creates silos. So the data that we collect

現在變成了資料貯存窖。我們為前列腺癌

for prostate cancer or for Alzheimer's trials

或阿茲海默症試驗所蒐集來的資料，

goes into silos where it can only be used

【TED】約翰-威爾班克斯。讓我們彙集我們的醫療數據（John Wilbanks：Let's pool our medical data）。 (【TED】John Wilbanks: Let's pool our medical data (John Wilbanks: Let's pool our medical data))

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【TED】約翰-威爾班克斯。讓我們彙集我們的醫療數據（John Wilbanks：Let's pool our medical data）。 (【TED】John Wilbanks: Let's pool our medical data (John Wilbanks: Let's pool our medical data))

subtle

significant

grab

vast