So I have bad news, I have good news,

今天我有好消息和壞消息，

and I have a task.

我還有個任務。

So the bad news is that we all get sick.

壞消息是我們都會生病。

I get sick. You get sick.

我會生病。你會生病。

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？

Is it something that we survive?

還是我們可以倖存？

Is it something that we can treat?

我們可以被醫治嗎？

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

只要我們是人類，就會生病。

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？

right? Or God, singular, more recently,

又或者是到較近期，唯一的，上帝，

is punishing me or judging me.

在懲罰我或審判我。

And as long as we've looked for explanations,

只要我們一开始尋找解釋，

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

就會愈來越接近科學，

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

列出了測試藥物的規則，

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

若能將這些理想的假設狀況

of a narrative or a hypothesis in human testing,

全部集合到人體試驗上，

right, you get some beautiful results,

你會得到絕佳結果，

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.

他認為是透過蚊子傳染。

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.

自願感染黃熱病。

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

而其他一些人的帳篷裡充滿著

of mosquitos that had been exposed to yellow fever.

帶有黃熱病的蚊子。

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.

這是那些人自願做的事。

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 you probably died.

而且有可能會死。

But people volunteered for this.

但這些人對此自告奮勇。

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

這並不僅是件根據理論操作的

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

受試者同意書是我們社會應該

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

區隔開來的東西。這想法是

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

或任何人哄騙而進行一件

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.

不管你人在哪裡都無關。

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.

過程中我們不會傷害任何人。

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，

if not 50 to 100 years.

已經建立了完善的架構。

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.

我們可蒐集周遭環境的資訊。

And more importantly, we're able to gather information

更重要地，我們可以蒐集

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

我們選擇的資訊，因為事實上

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

因為它們是以人和人的互動

of person-to-person interaction. You interact

作為基礎。你和你的

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，

like most people were. This is my son.

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

這兩張照片所使用的科技

cannot be more different, but the methodology

相差甚大。但是在這段期間，

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。

We just have better statistics.

我們只是有較好的統計資料。

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.

大約是那照片拍攝的時間。

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

被存放到只被用來研究

for prostate cancer or for Alzheimer's research.

前列腺癌症或阿茲海默症的資料貯存窖中。

Right? It can't be networked. It can't be integrated.

對吧？資料不能被分享。不能被連結。

It cannot be used by people who aren't credentialed.

不能被無憑證的人使用。

So a physicist can't get access to it without filing paperwork.

所以沒有申請許可的話，物理學家不能取得資訊。

A computer scientist can't get access to it without filing paperwork.

沒有申請許可的話，電腦科學家不能取得資訊。

Computer scientists aren't patient. They don't file paperwork.

電腦科學家很沒耐心，他們不申請許可的。

And this is an accident. These are tools that we created

這真是個意外。我們創造了這些工具

to protect us from harm, but what they're doing

來保護我們不受到傷害，但它們現在卻

is protecting us from innovation now.

阻礙我們創新。

And that wasn't the goal. It wasn't the point. Right?

這有違目的。因為那不是本來的意思。對吧？

It's a side effect, if you will, of a power we created

你可以想說，這是我們立意為善下

to take us for good.

所產生的副作用。

And so if you think about it, the depressing thing is that

當你這麼想時，令人沮喪的是

Facebook would never make a change to something

臉書永遠不會為了第三階段臨床試驗裡

as important as an advertising algorithm

這麼小的樣品數，來改變其廣告規則

with a sample size as small as a Phase III clinical trial.

這樣重要的事。

We cannot take the information from past trials

我們不能使用過去試驗的資訊

and put them together to form statistically significant samples.

建立具有顯著統計性的研究樣品數。

And that sucks, right? So 45 percent of men develop

這感覺超差的，對不對？於是 45% 的男人會罹患癌症。

cancer. Thirty-eight percent of women develop cancer.

38% 的女人會罹患癌症。

One in four men dies of cancer.

四分之一的男人會因癌症而死。

One in five women dies of cancer, at least in the United States.

五分之一的女人會因癌症而死，至少就美國而言。

And three out of the four drugs we give you

在癌症試驗中，我們給你的四顆藥中，

if you get cancer fail. And this is personal to me.

有三顆是無效的。我對這些都身有所感。

My sister is a cancer survivor.

我妹妹是癌症的倖存者。

My mother-in-law is a cancer survivor. Cancer sucks.

我的岳母是癌症的倖存者。癌症爛透了。

And when you have it, you don't have a lot of privacy

當你罹患癌症時，你在醫院沒有什麼隱私權可言。

in the hospital. You're naked the vast majority of the time.

大部分時間你赤身露體的。

People you don't know come in and look at you and poke you and prod you,

不認識的人會進來、看一下你、戳你、刺你，

and when I tell cancer survivors that this tool we created

當我告訴癌症倖存者，我們設計來

to protect them is actually preventing their data from being used,

保護他們的工具，實際上是避免他們的個資被使用，

especially when only three to four percent of people

尤其是在只有百分之三或四的癌症患者

who have cancer ever even sign up for a clinical study,

曾經參與過臨床研究的情況下，

their reaction is not, "Thank you, God, for protecting my privacy."

他們的反應不是，「天啊，謝謝你保護我的隱私。」

It's outrage

而是憤怒，

that we have this information and we can't use it.

我們有這些資訊，但我們不能使用它。

And it's an accident.

這真是令人意外。

So the cost in blood and treasure of this is enormous.

人們在這方面付出的生命和財產代價非常龐大。

Two hundred and twenty-six billion a year is spent on cancer in the United States.

在美國，每年花費 2260 億在癌症上。

Fifteen hundred people a day die in the United States.

在美國，每天有 1500 人死於癌症。

And it's getting worse.

而且每況愈下。

So the good news is that some things have changed,

所以好消息是，有些事已經改變，

and the most important thing that's changed

而最重要的改變是

is that we can now measure ourselves in ways

現在我們可以自我測量

that used to be the dominion of the health system.

用以前由醫療系統掌控的方式。

So a lot of people talk about it as digital exhaust.

很多人將此視為數位侵略。

I like to think of it as the dust that runs along behind my kid.

我則樂於視為跟在我孩子後面的塵埃。

We can reach back and grab that dust,

我們可以向後伸出手抓住一把，

and we can learn a lot about health from it, so if our choices

然後從中學習到很多健康訊息， 所以如果我們的選擇

are part of our health, what we eat is a really important

會影響到我們的健康， 我們所吃的食物就真的

aspect of our health. So you can do something very simple

是我們健康的重要一環。 你可以做一些非常簡單

and basic and take a picture of your food,

和基本的事情，像是 拍一張你吃的食物的照片，

and if enough people do that, we can learn a lot about

若有足夠的人這麼做， 我們就可以學習到很多有關

how our food affects our health.

食物如何影響我們健康的事情。

One interesting thing that came out of this — this is an app for iPhones called The Eatery —

從中可得出一件有趣的事 ─ 這是一個 iPhone 應用程式叫 The Eatery ─

is that we think our pizza is significantly healthier

我們都以為我們吃的披薩會比其他人的

than other people's pizza is. Okay? (Laughter)

更為健康。對嗎？(笑聲)

And it seems like a trivial result, but this is the sort of research

這看起來像是個極微小的結果，但是以前醫療系統

that used to take the health system years

得花上好幾年和好幾十萬元

and hundreds of thousands of dollars to accomplish.

才能完成的研究。

It was done in five months by a startup company of a couple of people.

這是由一家兩個人成立的新創公司在五個月內完成的。

I don't have any financial interest in it.

我對其中的財務狀況沒有興趣。

But more nontrivially, we can get our genotypes done,

更重要的是，我們的基因型完成了，

and although our genotypes aren't dispositive, they give us clues.

雖然我們的基因型不是不可處置的，它們給了我們線索。

So I could show you mine. It's just A's, T's, C's and G's.

所以我可以給你們看我的。只有一些 A，T，C 和 G。

This is the interpretation of it. As you can see,

這是翻譯。你可以看到，

I carry a 32 percent risk of prostate cancer,

我有 32% 的機率罹患前列腺癌。

22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease.

我有 22% 的機率罹患牛皮癬 和 14% 的機率罹患阿茲海默症。

So that means, if you're a geneticist, you're freaking out,

這代表的是，如果你是個基因學家，你會被嚇死，

going, "Oh my God, you told everyone you carry the ApoE E4 allele. What's wrong with you?"

「天阿，你告訴每個人你有 載脂蛋白E類等位基因。你是有什麼毛病啊？」

Right? When I got these results, I started talking to doctors,

是吧？當我拿到結果時，我開始詢問醫生，

and they told me not to tell anyone, and my reaction is,

他們告訴我不要告訴任何人，我的反應是，

"Is that going to help anyone cure me when I get the disease?"

「當我生病時，這有助於其他人治療我嗎？」

And no one could tell me yes.

沒有人可以跟我說對。

And I live in a web world where, when you share things,

而我住在一個網路的世界，當你分享事情時，

beautiful stuff happens, not bad stuff.

美妙的事情發生了，不是壞事。

So I started putting this in my slide decks,

所以我開始將這放入我的投影片檔中，

and I got even more obnoxious, and I went to my doctor,

而且我變得更令人討厭，我去找我的醫生，

and I said, "I'd like to actually get my bloodwork.

我說：「我想要確實拿到我的血液檢查結果，

Please give me back my data." So this is my most recent bloodwork.

請還給我我的資料。」 於是這是我最近的血液檢查報告。

As you can see, I have high cholesterol.

你可以告到，我有高膽固醇。

I have particularly high bad cholesterol, and I have some

我有特別高且不好的膽固醇，我有一些

bad liver numbers, but those are because we had a dinner party with a lot of good wine

不好的肝臟指數，但這些是 一位我們進行檢查的前一天晚上

the night before we ran the test. (Laughter)

參加了晚宴且喝了很多好酒。(笑聲)

Right. But look at how non-computable this information is.

好。再看看這個資訊是多麼難計算。

This is like the photograph of my granddad holding my mom

這就像是我祖父抱著我媽的那張照片的

from a data perspective, and I had to go into the system

數據呈現，所以我必須進入系統

and get it out.

將它找出來。

So the thing that I'm proposing we do here

於是我要在這建議我們做的事是

is that we reach behind us and we grab the dust,

我們向後方伸出手抓住塵埃

that we reach into our bodies and we grab the genotype,

我們進入我們的身體內找到基因型，

and we reach into the medical system and we grab our records,

我們進入醫療系統內找到我們的紀錄，

and we use it to build something together, which is a commons.

我們一起將這些資料用來組合成一個公有物。

And there's been a lot of talk about commonses, right,

已經有很多有關公有物的談論，

here, there, everywhere, right. A commons is nothing more

這裡，那裡，到處都是。公有物就是

than a public good that we build out of private goods.

我們用私人物打造出來的公有物。

We do it voluntarily, and we do it through standardized

我們自願做這件事， 而且透過標準化的合法工具。

legal tools. We do it through standardized technologies.

透過標準化的科技。

Right. That's all a commons is. It's something that we build

是的。這就是一個公有物。 是我們一起建立的東西，

together because we think it's important.

因為我們認為它很重要。

And a commons of data is something that's really unique,

而且一個公有物的資料非常特別，

because we make it from our own data. And although

因為我們用我們自己的資料來建立它。

a lot of people like privacy as their methodology of control

雖然很多人喜歡將保護隱私 視為他們控制資料的方法，

around data, and obsess around privacy, at least

且非常著迷於隱私，至少

some of us really like to share as a form of control,

我們當中有些人真的喜歡 將分享視作一種控制的形式，

and what's remarkable about digital commonses

而數位化公有物最值得注意的就是

is you don't need a big percentage if your sample size is big enough

如果你的樣品數夠大， 你不需要大數值的比率

to generate something massive and beautiful.

就可以產生大量且美好的結果。

So not that many programmers write free software,

於是即使沒有很多程式設計師寫免費軟體，

but we have the Apache web server.

但我們有阿帕契 (Apache) 網頁伺服器。

Not that many people who read Wikipedia edit,

即使沒有很多讀維基百科的人進行編輯，