Why curiosity is the key to science and medicine | Kevin B. Jones

Translator: Joseph Geni Reviewer: Joanna Pietrulewicz

譯者: Helen Chang 審譯者: Adrienne Lin

Science.

科學

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

這詞喚起你們當中許多人

高中生物和物理課裡 無聊、不愉快的回憶。

in high school biology or physics class.

但我保證，

But let me assure that what you did there

你們當時的經歷與科學大相逕庭。

had very little to do with science.

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.

Because science is knowledge in process.

因為科學是求知的進程。

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，

再用實驗或其他的觀察 來測試這個預測。

with an experiment or other observation.

舉兩個例子。

A couple of examples.

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，

看似太陽和月亮都圍繞著天地轉。

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

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。

首次有人真正檢視這說法

This was first really tested

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，

他發現木星這個行星

what he found there was a planet, Jupiter,

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，

並且發現木星也沒繞著地球轉，

and found that Jupiter also was not going around the Earth

but around the Sun.

而是繞著太陽轉。

因此那個假設並未通過測試，

So the prediction test failed.

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.

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

另一個例子：艾薩克·牛頓爵士 注意到東西落地。

The guessed explanation was gravity,

他猜測的解釋是重力，

the prediction that everything should fall to the Earth.

預測每個東西都會落地。

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

當然，並非每個東西都會落地。

So did we discard gravity?

我們因此就棄捨重力論嗎？

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

當然不。我們把理論修正為： 重力曳引東西落地，

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

除非另有個力道相等 而方向相反的作用力。

這讓我們學到新知識。

This led us to learn something new.

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

我們開始更加注意鳥和鳥的翅膀，

and just think of all the discoveries

試想所有沿著這條思路 而引出的新發現。

that have flown from that line of thinking.

So the test failures, the exceptions, the outliers

因此，失敗的測試、例外與離群值，

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

教導我們原先未知的，

並且引領我們發現新知。

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，

有時媒體甚至連科學家都說

but sometimes even scientists will say

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

科學從未終極永遠地證明過什麼。

definitively forever.

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,

which, like Jupiter's moons,

像是木星的衛星那樣，

teaches us what we don't actually know.

教導我們原先並未真正明瞭的。

此刻我們暫時先變換個主題。

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

The caduceus, or the symbol of medicine,

蛇杖，醫學的標誌，

means a lot of different things to different people,

對不同的人而言，代表不同的意思，

但大多數的公共醫學論述

but most of our public discourse on medicine

really turns it into an engineering problem.

把它轉成了工程問題。

We have the hallways of Congress,

國會和保險公司的董事會

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

試圖找出支付醫療款項的方法。

The ethicists and epidemiologists

倫理學家和流行病學家

try to figure out how best to distribute medicine,

試圖找到分配醫藥的最佳方式。

而醫院和醫生們則完全沉迷於

and the hospitals and physicians are absolutely obsessed

with their protocols and checklists,

他們的儀軌和清單裡，

trying to figure out how best to safely apply medicine.

試圖找出最佳、最安全的行醫方式。

These are all good things.

這些都是好事。

However, they also all assume

然而，在某種程度上他們全都假設

at some level

that the textbook of medicine is closed.

醫學教科書已蓋棺論定。

我們以多快能獲得治療 來衡量我們的醫療品質。

We start to measure the quality of our health care

by how quickly we can access it.

It doesn't surprise me that in this climate,

在這種氣氛下，我一點也不訝異

many of our institutions for the provision of health care

許多機構所提供的醫療

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

變得像是 Jiffy Lube 汽車維修連鎖店那樣。

(Laughter)

（笑聲）

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

唯一的問題是

當我自醫學院畢業時，

I didn't get one of those little doohickeys

沒拿到像這樣的小玩意，

that your mechanic has to plug into your car

汽車技工把它插進車裡，

and find out exactly what's wrong with it,

用來找出車子哪裡出了問題。

因為醫學的教科書尚未編寫完整，

because the textbook of medicine

is not closed.

Medicine is science.

醫學是科學，

Medicine is knowledge in process.

醫學是正在進程中的知識。

We make an observation,

我們觀察，

we guess an explanation of that observation,

為所觀察到的現象猜個解釋，

and then we make a prediction that we can test.

然後做個可以測試的預測。

Now, the testing ground of most predictions in medicine

多數的醫療預測在民眾的身上測試。

is populations.

And you may remember from those boring days in biology class

你們可能記得

從前上的無聊生物課裡說到，

that populations tend to distribute

人口的分佈

傾向集中於平均值

around a mean

as a Gaussian or a normal curve.

也就是高斯或常態分佈。

Therefore, in medicine,

因此，在醫學上

after we make a prediction from a guessed explanation,

猜了個解釋後，我們預測假設，

we test it in a population.

然後在民眾身上測試。

That means that what we know in medicine,

這意味著我們的醫學知識，

our knowledge and our know-how,

我們的知識和學問

comes from populations

來自人群，

but extends only as far

它最遠只延伸到

as the next outlier,

下一個離群值、

the next exception,

下一個例外；

which, like Jupiter's moons,

就像木星的衛星，

will teach us what we don't actually know.

能教導我們原先未確切明白的道理。

我是個外科醫生，

Now, I am a surgeon

who looks after patients with sarcoma.

照顧惡性肉瘤癌症的患者。

Sarcoma is a very rare form of cancer.

肉瘤是種罕見的癌症。

It's the cancer of flesh and bones.

是肌肉與骨骼的癌變。

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

我必須說，

我的每個病人都是個離群值，

is an exception.

是個特例。

我為肉瘤患者動的手術，

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

不曾有任何一個遵循著

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

隨機控制的臨床試驗，

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

也就是我們以為是 人口常態分佈的最佳醫療方式。

People talk about thinking outside the box,

人們總說要跳脫框框， 採取創造性思維，

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

但肉瘤沒有既定的框框。

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

我們的肉瘤被不確定、

and unknowns and exceptions and outliers that surround us in sarcoma

未知、特例和離群值所包圍，

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,

when a patient asks me a question,

當病患問我問題，

and I don't know the answer,

而我沒有答案時，

I'll ask a colleague

我會請教其他接觸過

who may have a similar albeit distinct patient with sarcoma.

類似但是不同的肉瘤病患的同事，

We'll even establish international collaborations.

我們甚至會建立國際間的合作。

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

病患能透過聊天室 和支持團體彼此對談。

and support groups.

It's through this kind of humbly curious communication

經由這樣謙卑好奇的交流，

that we begin to try and learn new things.

我們開始嘗試學習新知識。

As an example, this is a patient of mine

例如，我的這個病人

who had a cancer near his knee.

在近膝蓋處罹癌。

Because of humbly curious communication

經由謙卑好奇的國際合作交流，

in international collaborations,

我們得知能夠移用腳踝

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

替代被移除的罹癌膝蓋，

when we have to remove the knee with the cancer.

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

他就可以戴著假肢跑、跳與玩耍了。

This opportunity was available to him

他因國際的合作而有了這契機。

because of international collaborations.

It was desirable to him

他希望做這樣的手術，

because he had contacted other patients who had experienced it.

因他接觸過其他經歷過的病人。

And so exceptions and outliers in medicine

因此，醫學上的特例和離群值

教我們原本我們所不知道的，

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

也引導我們產生新的想法。

非常重要的是，

Now, very importantly,

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

所有的特例和離群值 帶給我們醫學領域的新想法

does not only apply to the outliers and exceptions.

不僅適用於特例和離群值。

It is not that we only learn from sarcoma patients

我們從肉瘤病患身上 不僅學到治療肉瘤患者的方法。

ways to manage sarcoma patients.

Sometimes, the outliers

有時候特例和離群值

and the exceptions

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

教我們許多適用於普羅大眾的新知。

Like a tree standing outside a forest,

就像矗立在森林外的樹木，

the outliers and the exceptions draw our attention

特例和離群值吸引我們去注意、

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

引領我們去領悟更宏觀的認識，

像「樹木是什麼」。

We often talk about losing the forests for the trees,

我們常說見樹不見林，

但人們也常會見林而忽視了樹。

but one also loses a tree

within a forest.

獨自矗立在森林之外的樹

But the tree that stands out by itself

makes those relationships that define a tree,

使得樹木定義的關係，

the relationships between trunk and roots and branches,

那些樹幹、樹根、樹枝間的關係，

much more apparent.

更為明朗。

Even if that tree is crooked

即使那是棵歪斜扭曲的樹，

或者那棵樹的樹幹、樹根、 與樹枝間的關係不尋常，

or even if that tree has very unusual relationships

between trunk and roots and branches,

it nonetheless draws our attention

儘管如此，它仍吸引我們的注意力，

讓我們觀察，

and allows us to make observations

然後在普羅大眾的身上測試。

that we can then test in the general population.

我說過肉瘤癌極為罕見，

I told you that sarcomas are rare.

大約只佔所有癌症案例的百分之一。

They make up about one percent of all cancers.

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

你們大概也知道， 癌症被視為是一種遺傳疾病。

By genetic disease we mean that cancer is caused by oncogenes

遺傳疾病的意思是

癌基因引起癌症，

that are turned on in cancer

當癌基因被開啟

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

而腫瘤抑制基因卻關閉時，

誘發了癌症。

你可能認為

You might think that we learned about oncogenes

我們對癌基因和腫瘤抑制基因的認識

and tumor suppressor genes from common cancers

來自常見的癌症，

like breast cancer and prostate cancer

像是乳癌、前列腺癌

and lung cancer,

和肺癌，

but you'd be wrong.

但你錯了。

我們首次學到癌基因和腫瘤抑制基因

We learned about oncogenes and tumor suppressor genes

for the first time

是從那微少、僅僅佔百分之一，

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

名為肉瘤癌的癌症。

In 1966, Peyton Rous got the Nobel Prize

佩頓·勞斯在 1966 年 獲得了諾貝爾獎，

for realizing that chickens

由於他發現了雞禽裡

had a transmissible form of sarcoma.

有種傳染性肉瘤。

Thirty years later, Harold Varmus and Mike Bishop discovered

三十年後，哈羅德·瓦爾姆斯 與麥克·畢曉普發現了

那種傳染性的因子究竟是什麼。

what that transmissible element was.

It was a virus

它是一種攜帶基因的病毒，

carrying a gene,

the src oncogene.

SRC 癌基因。

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

我不是說 SRC 是最重要的癌基因。

I will not tell you

也不是說

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

SRC 是所有的癌症中 最常被開啟的癌基因。

But it was the first oncogene.

但它是第一個被發現的癌基因。

The exception, the outlier

這特例、離群值

drew our attention and led us to something

吸引了我們的注意，帶領我們發現，

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

教導我們其他 有關生物學的重要知識。

Now, TP53 is the most important tumor suppressor gene.

TP53 是最重要的腫瘤抑制基因。

是幾乎所有的癌症裡 最常關閉的腫瘤抑制基因。

It is the most frequently turned off tumor suppressor gene

in almost every kind of cancer.

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

但我們不是從一般的癌症裡 學到這一點。

We learned about it when doctors Li and Fraumeni

而是當李醫生和佛美尼醫生

在檢視家族病史時，

were looking at families,

and they realized that these families

發現這些家庭的肉瘤癌症比例

had way too many sarcomas.

遠高於一般家庭。

I told you that sarcoma is rare.

我說過肉瘤癌極為罕見。

Remember that a one in a million diagnosis,

請記住，

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，

if it happens twice in one family,

但那個家庭的發生率實在太高了。

is way too common in that family.

The very fact that these are rare

就是因為十分罕見，

draws our attention

所以吸引我們的注意，

and leads us to new kinds of thinking.

啟發我們新的思考。

Now, many of you may say,

或許你們當中的很多人會說，

and may rightly say,

也有權這樣說，

that yeah, Kevin, that's great,

是啊，凱文，那很棒，

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

但是你所說的並非鳥的翅膀，

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

也不是繞著木星轉的衛星，

This is a person.

而是人啊。

離群值或特例能引致科學的進步，

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

but this is a person.

但我們談的是人啊。

And all I can say

我只能說，

is that I know that all too well.

我太明白了。

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

我與這些罹患罕見 而致命疾病的患者對話。

I write about these conversations.

我紀錄這些對話。

These conversations are terribly fraught.

這些對話非常令人焦慮，

充滿著恐怖的語句，

They're fraught with horrible phrases

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

像是「我有個壞消息」

或是「我們一籌莫展」。

Sometimes these conversations turn on a single word:

有時對話轉向一個單詞：

"terminal."

「末期」。

Silence can also be rather uncomfortable.

沉默能讓人非常難受。

Where the blanks are in medicine

在醫學裡，空白的位置

can be just as important

可能會像那些對話裡的 用字遣詞一樣重要。

as the words that we use in these conversations.

什麼是未知的？

What are the unknowns?

What are the experiments that are being done?

哪些試驗正在進行中？

Do this little exercise with me.

和我一同做個小練習。

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

看在銀幕上的片語：「無處」。

Notice where the blank is.

注意空格落在何處。

If we move that blank one space over

如果我們把空格向右移一格，

"no where"

「無處」

becomes "now here,"

變成了「此刻在這裡」，

the exact opposite meaning,

完全相反的意思，

just by shifting the blank one space over.

僅僅把空格向右移了一格。

I'll never forget the night

我永遠忘不了走進 一位患者病房的那一晚。

that I walked into one of my patients' rooms.

I had been operating long that day

雖然我在手術房裡忙了一天，

but I still wanted to come and see him.

仍然想去看看他。

幾天前我診斷出 這個男孩罹患了骨癌。

He was a boy I had diagnosed with a bone cancer a few days before.

He and his mother had been meeting with the chemotherapy doctors

稍早他和他的母親 與化療醫生談過話，

earlier that day,

他剛剛入院開始化療。

and he had been admitted to the hospital to begin chemotherapy.

約在午夜時分，我進到他的病房。

It was almost midnight when I got to his room.

他沉睡著，

He was asleep, but I found his mother

而他的母親正在病床旁

reading by flashlight

藉由手電筒的光閱讀著。

next to his bed.

She came out in the hall to chat with me for a few minutes.

她走出來，在走道上 和我聊了幾分鐘。

It turned out that what she had been reading

原來她正在閱讀

was the protocol that the chemotherapy doctors

當天稍早化療醫生給她的程序手冊。

had given her that day.

She had memorized it.

她記住了裡面的內容。

She said, "Dr. Jones, you told me

她說：「瓊斯醫生，

你告訴過我

that we don't always win

這種癌症未必能被療癒，

with this type of cancer,

but I've been studying this protocol, and I think I can do it.

但我很仔細研究治療程序，

認為我做得到。

I think I can comply with these very difficult treatments.

我認為我們能夠承受這困難的治療。

I'm going to quit my job. I'm going to move in with my parents.

我要辭職，

搬去和父母親同住。

I'm going to keep my baby safe."

我要救我的孩子。」

I didn't tell her.

我沒告訴她。

I didn't stop to correct her thinking.

我沒糾正她的想法。

She was trusting in a protocol

她信任的醫療程序，

that even if complied with,

即使完全照著做，

wouldn't necessarily save her son.

也未必救得了她的兒子。

I didn't tell her.

我沒告訴她。

I didn't fill in that blank.

我沒填入那個空白。

一年半後，

But a year and a half later

她的兒子還是死於癌症。

her boy nonetheless died of his cancer.

Should I have told her?

當時我應該告訴她嗎？

Now, many of you may say, "So what?

或許你們當中有許多人會說：

「那又怎樣？

I don't have sarcoma.

我沒罹患肉瘤癌。

No one in my family has sarcoma.

我的家族沒有任何人罹患肉瘤癌。

And this is all fine and well,

這些都有道理，

but it probably doesn't matter in my life."

但大概與我無關。」

或許你是對的。

And you're probably right.

Sarcoma may not matter a whole lot in your life.

肉瘤癌或許與你無甚關聯。

但是醫學上的空白部分

But where the blanks are in medicine

does matter in your life.

卻與你的生命息息相關。

I didn't tell you one dirty little secret.

我沒告訴你們 一個不甚光彩的小秘密。

I told you that in medicine, we test predictions in populations,

我說過在醫學裡，

我們在民眾的身上 測試所預測的假設。

but I didn't tell you,

但我沒說的是，

and so often medicine never tells you

通常醫學並未告訴你們，

that every time an individual

每次某個人接觸治療，

encounters medicine,

even if that individual is firmly embedded in the general population,

即使那個人的確是普羅大眾的一員，

neither the individual nor the physician knows

他和醫生都不知道

where in that population the individual will land.

他在人口分布中會落在哪一點。

因此，每個醫療行為都是個試驗。

Therefore, every encounter with medicine

is an experiment.

You will be a subject

你將會是個被試驗的主體。

in an experiment.

And the outcome will be either a better or a worse result for you.

試驗結果，

你的情況可能變好也可能變差。

As long as medicine works well,

只要藥物起作用，

we're fine with fast service,

我們不在乎治療的快慢，

以及那些自滿、充滿自信的談話。

bravado, brimmingly confident conversations.

But when things don't work well,

但是如果事情進展不順利，

sometimes we want something different.

有時我們就要做法不同。

A colleague of mine removed a tumor from a patient's limb.

我有個同事切除病人肢體的腫瘤。

He was concerned about this tumor.

他很擔心這個腫瘤。

In our physician conferences, he talked about his concern

在我們的研討會上， 他講述他的憂慮，

that this was a type of tumor

這是種原位複發率極高的腫瘤。

that had a high risk for coming back in the same limb.

But his conversations with the patient

但是他與病患的對話

were exactly what a patient might want:

卻完全是病患想聽到的那種：

brimming with confidence.

充滿了自信。

他說：「我已完全清除腫瘤，

He said, "I got it all and you're good to go."

妳可以回家了。」

她和她的丈夫喜出望外。

She and her husband were thrilled.

They went out, celebrated, fancy dinner, opened a bottle of champagne.

他們上館子慶祝，

享用大餐，還開了瓶香檳。

唯一的問題是幾個星期後，

The only problem was a few weeks later,

she started to notice another nodule in the same area.

她注意到在相同的區域 出現了另一個硬塊。

It turned out he hadn't gotten it all, and she wasn't good to go.

真相是醫生並未清乾淨腫瘤，

她並未真的痊癒可以返家。

But what happened at this juncture absolutely fascinates me.

當下發生的事吸引了我。

My colleague came to me and said,

我的同事問我：

"Kevin, would you mind looking after this patient for me?"

「凱文，你願意幫我 照料這個病人嗎？」

I said, "Why, you know the right thing to do as well as I do.

我說：「為什麼，

你和我一樣知道該怎麼做啊。

You haven't done anything wrong."

你沒做錯任何事。」

他說：「拜託你，

He said, "Please, just look after this patient for me."

幫我照料這個病人吧。 」

He was embarrassed --

他很尷尬，

not by what he had done,

但不是為了他動的手術，

而是他先前的對話，

but by the conversation that he had had,

by the overconfidence.

和過度的自信讓他很尷尬。

So I performed a much more invasive surgery

因此我動了更深入的切除手術，

and had a very different conversation with the patient afterwards.

術後和我和病人的對話截然不同。

I said, "Most likely I've gotten it all

我說：「看起來很像已經清乾淨了，

and you're most likely good to go,

妳看似可以回家了。

but this is the experiment that we're doing.

但我們做的是個試驗。

妳需要繼續觀察，

This is what you're going to watch for.

我也需要繼續觀察。

This is what I'm going to watch for.

我們一起努力，

And we're going to work together to find out if this surgery will work

看手術是否成功去除了妳的腫瘤。」

to get rid of your cancer."

I can guarantee you, she and her husband

我可以向你們保證，

did not crack another bottle of champagne after talking to me.

在這次談話後，她和她的丈夫 並沒再開一瓶香檳慶祝。

But she was now a scientist,

但她現在採取科學家的態度，

not only a subject in her experiment.

而不僅是個被試驗的主體而已。

And so I encourage you

因此我鼓勵你們

to seek humility and curiosity

尋求你們醫生的謙遜和好奇心。

in your physicians.

Almost 20 billion times each year,

每年大約兩百億次，

a person walks into a doctor's office,

一個人走進醫生的辦公室

and that person becomes a patient.

成了一名病患。

You or someone you love will be that patient sometime very soon.

你和你所愛的人 不久的將來也會成為病患。

How will you talk to your doctors?

你如何與你的醫生對話？

What will you tell them?

你要怎麼跟他們說？

What will they tell you?

他們會告訴你些什麼？

They cannot tell you

他們自己也不知道的事， 他們無法告訴你，

what they do not know,

but they can tell you when they don't know

但是如果你問了，

當他們不知道的時候， 他們會回答不知道。

if only you'll ask.

所以，請加入對話吧。

So please, join the conversation.

Thank you.

謝謝。

(Applause)

（掌聲）