The very word for many of you conjures unhappy memories of boredom

這詞喚起你們當中許多人

in high school biology or physics class.

高中生物和物理課裡 無聊、不愉快的回憶。

But let me assure that what you did there

但我保證，

had very little to do with science.

你們當時的經歷與科學大相逕庭。

That was really the "what" of science.

那其實是科學的 「是什麼」的那部分。

It was the history of what other people had discovered.

是前人發現的歷史記載。

What I'm most interested in as a scientist

身為科學家，我最感興趣的 是科學的「如何」那部分。

is the "how" of science.

因為科學是求知的進程。

Because science is knowledge in process.

我們觀察，

We make an observation, guess an explanation for that observation,

猜個說法用來解釋所觀察到的現象，

and then make a prediction that we can test

然後預測假設，

with an experiment or other observation.

再用實驗或其他的觀察 來測試這個預測。

A couple of examples.

舉兩個例子。

First of all, people noticed that the Earth was below, the sky above,

第一個，前人注意到 地在下而天在上，

and both the Sun and the Moon seemed to go around them.

看似太陽和月亮都圍繞著天地轉。

Their guessed explanation

他們猜的解釋是

was that the Earth must be the center of the universe.

地球想必是宇宙的中心。

The prediction: everything should circle around the Earth.

預測：每樣東西都應該繞著地球轉。

This was first really tested

首次有人真正檢視這說法

when Galileo got his hands on one of the first telescopes,

是伽里略從第一批 望遠鏡中拿到了一台，

and as he gazed into the night sky,

並著手觀測星空的時候，

what he found there was a planet, Jupiter,

他發現木星這個行星

with four moons circling around it.

有四個繞著它轉的衛星。

He then used those moons to follow the path of Jupiter

他用這些衛星來追蹤木星的軌跡，

and found that Jupiter also was not going around the Earth

並且發現木星也沒繞著地球轉，

but around the Sun.

而是繞著太陽轉。

So the prediction test failed.

因此那個假設並未通過測試，

And this led to the discarding of the theory

所以導致大家捨棄了 地球是宇宙中心的理論。

that the Earth was the center of the universe.

另一個例子：艾薩克·牛頓爵士 注意到東西落地。

Another example: Sir Isaac Newton noticed that things fall to the Earth.

他猜測的解釋是重力，

The guessed explanation was gravity,

預測每個東西都會落地。

the prediction that everything should fall to the Earth.

當然，並非每個東西都會落地。

But of course, not everything does fall to the Earth.

我們因此就棄捨重力論嗎？

So did we discard gravity?

當然不。我們把理論修正為： 重力曳引東西落地，

No. We revised the theory and said, gravity pulls things to the Earth

除非另有個力道相等 而方向相反的作用力。

unless there is an equal and opposite force in the other direction.

這讓我們學到新知識。

This led us to learn something new.

我們開始更加注意鳥和鳥的翅膀，

We began to pay more attention to the bird and the bird's wings,

試想所有沿著這條思路 而引出的新發現。

and just think of all the discoveries

因此，失敗的測試、例外與離群值，

that have flown from that line of thinking.

教導我們原先未知的，

So the test failures, the exceptions, the outliers

並且引領我們發現新知。

teach us what we don't know and lead us to something new.

科學如此前進。

This is how science moves forward. This is how science learns.

科學如此學習。

Sometimes in the media, and even more rarely,

雖然罕見，

but sometimes even scientists will say

有時媒體甚至連科學家都說

that something or other has been scientifically proven.

這或那個已經被科學所證明了。

But I hope that you understand that science never proves anything

但我希望你們明白

definitively forever.

科學從未終極永遠地證明過什麼。

Hopefully science remains curious enough

希望科學家保有足夠的好奇心

to look for

去探尋，

and humble enough to recognize

並且謙卑得足以辨認，

when we have found

在我們發現下一個離群值

the next outlier,

或例外時，

the next exception,

像是木星的衛星那樣，

which, like Jupiter's moons,

教導我們原先並未真正明瞭的。

teaches us what we don't actually know.

此刻我們暫時先變換個主題。

We're going to change gears here for a second.

蛇杖，醫學的標誌，

The caduceus, or the symbol of medicine,

對不同的人而言，代表不同的意思，

means a lot of different things to different people,

但大多數的公共醫學論述

but most of our public discourse on medicine

把它轉成了工程問題。

really turns it into an engineering problem.

國會和保險公司的董事會

We have the hallways of Congress,

試圖找出支付醫療款項的方法。

and the boardrooms of insurance companies that try to figure out how to pay for it.

倫理學家和流行病學家

The ethicists and epidemiologists

試圖找到分配醫藥的最佳方式。

try to figure out how best to distribute medicine,

而醫院和醫生們則完全沉迷於

and the hospitals and physicians are absolutely obsessed

他們的儀軌和清單裡，

with their protocols and checklists,

試圖找出最佳、最安全的行醫方式。

trying to figure out how best to safely apply medicine.

這些都是好事。

These are all good things.

然而，在某種程度上他們全都假設

However, they also all assume

醫學教科書已蓋棺論定。

at some level

我們以多快能獲得治療 來衡量我們的醫療品質。

that the textbook of medicine is closed.

在這種氣氛下，我一點也不訝異

We start to measure the quality of our health care

許多機構所提供的醫療

by how quickly we can access it.

變得像是 Jiffy Lube 汽車維修連鎖店那樣。

It doesn't surprise me that in this climate,

（笑聲）

many of our institutions for the provision of health care

唯一的問題是

start to look a heck of a lot like Jiffy Lube.

當我自醫學院畢業時，

(Laughter)

沒拿到像這樣的小玩意，

The only problem is that when I graduated from medical school,

汽車技工把它插進車裡，

I didn't get one of those little doohickeys

用來找出車子哪裡出了問題。

that your mechanic has to plug into your car

因為醫學的教科書尚未編寫完整，

and find out exactly what's wrong with it,

醫學是科學，

because the textbook of medicine

醫學是正在進程中的知識。

is not closed.

我們觀察，

Medicine is science.

為所觀察到的現象猜個解釋，

Medicine is knowledge in process.

然後做個可以測試的預測。

We make an observation,

多數的醫療預測在民眾的身上測試。

we guess an explanation of that observation,

你們可能記得

and then we make a prediction that we can test.

從前上的無聊生物課裡說到，

Now, the testing ground of most predictions in medicine

人口的分佈

is populations.

傾向集中於平均值

And you may remember from those boring days in biology class

也就是高斯或常態分佈。

that populations tend to distribute

因此，在醫學上

around a mean

猜了個解釋後，我們預測假設，

as a Gaussian or a normal curve.

然後在民眾身上測試。

Therefore, in medicine,

這意味著我們的醫學知識，

after we make a prediction from a guessed explanation,

我們的知識和學問

we test it in a population.

來自人群，

That means that what we know in medicine,

它最遠只延伸到

our knowledge and our know-how,

下一個離群值、

comes from populations

下一個例外；

but extends only as far

就像木星的衛星，

as the next outlier,

能教導我們原先未確切明白的道理。

the next exception,

我是個外科醫生，

which, like Jupiter's moons,

照顧惡性肉瘤癌症的患者。

will teach us what we don't actually know.

肉瘤是種罕見的癌症。

Now, I am a surgeon

是肌肉與骨骼的癌變。

who looks after patients with sarcoma.

我必須說，

Sarcoma is a very rare form of cancer.

我的每個病人都是個離群值，

It's the cancer of flesh and bones.

是個特例。

And I would tell you that every one of my patients is an outlier,

我為肉瘤患者動的手術，

is an exception.

不曾有任何一個遵循著

There is no surgery I have ever performed for a sarcoma patient

隨機控制的臨床試驗，

that has ever been guided by a randomized controlled clinical trial,

也就是我們以為是 人口常態分佈的最佳醫療方式。

what we consider the best kind of population-based evidence in medicine.

人們總說要跳脫框框， 採取創造性思維，

People talk about thinking outside the box,

但肉瘤沒有既定的框框。

but we don't even have a box in sarcoma.

我們的肉瘤被不確定、

What we do have as we take a bath in the uncertainty

未知、特例和離群值所包圍，

and unknowns and exceptions and outliers that surround us in sarcoma

我認為易用的是

is easy access to what I think are those two most important values

普世科學的兩個最重要的價值：

for any science:

謙卑和好奇心。

humility and curiosity.

若我謙卑和好奇，

Because if I am humble and curious,

當病患問我問題，

when a patient asks me a question,

而我沒有答案時，

and I don't know the answer,

我會請教其他接觸過

I'll ask a colleague

類似但是不同的肉瘤病患的同事，

who may have a similar albeit distinct patient with sarcoma.

我們甚至會建立國際間的合作。

We'll even establish international collaborations.

病患能透過聊天室 和支持團體彼此對談。

Those patients will start to talk to each other through chat rooms

經由這樣謙卑好奇的交流，

and support groups.

我們開始嘗試學習新知識。

It's through this kind of humbly curious communication

例如，我的這個病人

that we begin to try and learn new things.

在近膝蓋處罹癌。

As an example, this is a patient of mine

經由謙卑好奇的國際合作交流，

who had a cancer near his knee.

我們得知能夠移用腳踝

Because of humbly curious communication

替代被移除的罹癌膝蓋，

in international collaborations,

他就可以戴著假肢跑、跳與玩耍了。

we have learned that we can repurpose the ankle to serve as the knee

他因國際的合作而有了這契機。

when we have to remove the knee with the cancer.

他希望做這樣的手術，

He can then wear a prosthetic and run and jump and play.

因他接觸過其他經歷過的病人。

This opportunity was available to him

因此，醫學上的特例和離群值

because of international collaborations.

教我們原本我們所不知道的，

It was desirable to him

也引導我們產生新的想法。

because he had contacted other patients who had experienced it.

非常重要的是，

And so exceptions and outliers in medicine

所有的特例和離群值 帶給我們醫學領域的新想法

teach us what we don't know, but also lead us to new thinking.

不僅適用於特例和離群值。

Now, very importantly,

我們從肉瘤病患身上 不僅學到治療肉瘤患者的方法。

all the new thinking that outliers and exceptions lead us to in medicine

有時候特例和離群值

does not only apply to the outliers and exceptions.

教我們許多適用於普羅大眾的新知。

It is not that we only learn from sarcoma patients

就像矗立在森林外的樹木，

ways to manage sarcoma patients.

特例和離群值吸引我們去注意、

Sometimes, the outliers

引領我們去領悟更宏觀的認識，

and the exceptions

像「樹木是什麼」。

teach us things that matter quite a lot to the general population.

我們常說見樹不見林，

Like a tree standing outside a forest,

但人們也常會見林而忽視了樹。

the outliers and the exceptions draw our attention

獨自矗立在森林之外的樹

and lead us into a much greater sense of perhaps what a tree is.

使得樹木定義的關係，

We often talk about losing the forests for the trees,

那些樹幹、樹根、樹枝間的關係，

but one also loses a tree

更為明朗。

within a forest.

即使那是棵歪斜扭曲的樹，

But the tree that stands out by itself

或者那棵樹的樹幹、樹根、 與樹枝間的關係不尋常，

makes those relationships that define a tree,

儘管如此，它仍吸引我們的注意力，

the relationships between trunk and roots and branches,

讓我們觀察，

much more apparent.

然後在普羅大眾的身上測試。

Even if that tree is crooked

我說過肉瘤癌極為罕見，

or even if that tree has very unusual relationships

大約只佔所有癌症案例的百分之一。

between trunk and roots and branches,

你們大概也知道， 癌症被視為是一種遺傳疾病。

it nonetheless draws our attention

遺傳疾病的意思是

and allows us to make observations

癌基因引起癌症，

that we can then test in the general population.

當癌基因被開啟

I told you that sarcomas are rare.

而腫瘤抑制基因卻關閉時，

They make up about one percent of all cancers.

誘發了癌症。

You also probably know that cancer is considered a genetic disease.

你可能認為

By genetic disease we mean that cancer is caused by oncogenes

我們對癌基因和腫瘤抑制基因的認識

that are turned on in cancer

來自常見的癌症，

and tumor suppressor genes that are turned off to cause cancer.

像是乳癌、前列腺癌

You might think that we learned about oncogenes

和肺癌，

and tumor suppressor genes from common cancers

但你錯了。

like breast cancer and prostate cancer

我們首次學到癌基因和腫瘤抑制基因

and lung cancer,

是從那微少、僅僅佔百分之一，

but you'd be wrong.

名為肉瘤癌的癌症。

We learned about oncogenes and tumor suppressor genes

佩頓·勞斯在 1966 年 獲得了諾貝爾獎，

for the first time

由於他發現了雞禽裡

in that itty-bitty little one percent of cancers called sarcoma.

有種傳染性肉瘤。

In 1966, Peyton Rous got the Nobel Prize

三十年後，哈羅德·瓦爾姆斯 與麥克·畢曉普發現了

for realizing that chickens

那種傳染性的因子究竟是什麼。

had a transmissible form of sarcoma.

它是一種攜帶基因的病毒，

Thirty years later, Harold Varmus and Mike Bishop discovered

SRC 癌基因。

what that transmissible element was.

我不是說 SRC 是最重要的癌基因。

It was a virus

也不是說

carrying a gene,

SRC 是所有的癌症中 最常被開啟的癌基因。

the src oncogene.

但它是第一個被發現的癌基因。

Now, I will not tell you that src is the most important oncogene.

這特例、離群值

I will not tell you

吸引了我們的注意，帶領我們發現，

that src is the most frequently turned on oncogene in all of cancer.

教導我們其他 有關生物學的重要知識。

But it was the first oncogene.

TP53 是最重要的腫瘤抑制基因。

The exception, the outlier

是幾乎所有的癌症裡 最常關閉的腫瘤抑制基因。

drew our attention and led us to something

但我們不是從一般的癌症裡 學到這一點。

that taught us very important things about the rest of biology.

而是當李醫生和佛美尼醫生

Now, TP53 is the most important tumor suppressor gene.

在檢視家族病史時，

It is the most frequently turned off tumor suppressor gene

發現這些家庭的肉瘤癌症比例

in almost every kind of cancer.

遠高於一般家庭。

But we didn't learn about it from common cancers.

我說過肉瘤癌極為罕見。

We learned about it when doctors Li and Fraumeni

請記住，

were looking at families,

一般而言一個家庭裡發生 兩件肉瘤癌的機率是百萬分之一，

and they realized that these families

但那個家庭的發生率實在太高了。

had way too many sarcomas.

就是因為十分罕見，

I told you that sarcoma is rare.

所以吸引我們的注意，

Remember that a one in a million diagnosis,

啟發我們新的思考。

if it happens twice in one family,

或許你們當中的很多人會說，

is way too common in that family.

也有權這樣說，

The very fact that these are rare

是啊，凱文，那很棒，

draws our attention

但是你所說的並非鳥的翅膀，

and leads us to new kinds of thinking.

也不是繞著木星轉的衛星，

Now, many of you may say,

而是人啊。

and may rightly say,

離群值或特例能引致科學的進步，

that yeah, Kevin, that's great,

但我們談的是人啊。

but you're not talking about a bird's wing.

我只能說，

You're not talking about moons floating around some planet Jupiter.

我太明白了。

This is a person.

我與這些罹患罕見 而致命疾病的患者對話。

This outlier, this exception, may lead to the advancement of science,

我紀錄這些對話。

but this is a person.

這些對話非常令人焦慮，

And all I can say

充滿著恐怖的語句，

is that I know that all too well.

像是「我有個壞消息」

I have conversations with these patients with rare and deadly diseases.

或是「我們一籌莫展」。

I write about these conversations.

有時對話轉向一個單詞：

These conversations are terribly fraught.

「末期」。

They're fraught with horrible phrases

沉默能讓人非常難受。

like "I have bad news" or "There's nothing more we can do."

在醫學裡，空白的位置

Sometimes these conversations turn on a single word:

可能會像那些對話裡的 用字遣詞一樣重要。

"terminal."

什麼是未知的？

Silence can also be rather uncomfortable.

哪些試驗正在進行中？

Where the blanks are in medicine

和我一同做個小練習。

can be just as important

看在銀幕上的片語：「無處」。

as the words that we use in these conversations.

注意空格落在何處。

What are the unknowns?

如果我們把空格向右移一格，

What are the experiments that are being done?

「無處」

Do this little exercise with me.

變成了「此刻在這裡」，

Up there on the screen, you see this phrase, "no where."

完全相反的意思，

Notice where the blank is.

僅僅把空格向右移了一格。

If we move that blank one space over

我永遠忘不了走進 一位患者病房的那一晚。

"no where"

雖然我在手術房裡忙了一天，

becomes "now here,"

仍然想去看看他。

the exact opposite meaning,

幾天前我診斷出 這個男孩罹患了骨癌。