I was working at the ACLU as the organization's science advisor.

2005年秋天的一個下午，

I really, really loved my job,

我在 ACLU（美國公民自由聯盟） 擔任該組織的科學顧問，

but I was having one of those days

我真的很熱愛我的工作，

where I was feeling just a little bit discouraged.

但那些日子的某一天，

So I wandered down the hallway to my colleague Chris Hansen's office.

我感覺有一點提不起勁，

Chris had been at the ACLU for more than 30 years,

我意興闌珊地經過走廊來到 我同事 Chris Hansen 的辦公室。

so he had deep institutional knowledge and insights.

Chris Hansen 在 ACLU 工作三十幾年了，

I explained to Chris that I was feeling a little bit stuck.

他對制度有相當深刻的認識和洞察。

I had been investigating a number of issues

我向 Chris 解釋， 我最近感覺到有點束手無策。

at the intersection of science and civil liberties -- super interesting.

我當時在調查

But I wanted the ACLU to engage these issues in a much bigger way,

處在科學和公民自由十字路口的 一系列問題--這超級有意思。

in a way that could really make a difference.

但我希望 ACLU 能夠用 更廣泛的方式來處理這些問題，

So Chris cut right to the chase, and he says,

一個真正能做出改變的方式。

"Well, of all the issues you've been looking at, what are the top five?"

所以，Chris直接切入重點，他說，

"Well, there's genetic discrimination,

“ 那好，就你目前觀察的問題中， 排前五名的是那些？”

and reproductive technologies,

“嗯，這裡面有遺傳歧視、

and biobanking, and ...

生殖技術

oh, there's this really cool issue,

及生物樣本庫，還有...

functional MRI and using it for lie detection, and ...

哦，還有一個很酷的爭議，

oh, and of course, there's gene patents."

功能性 MRI（核磁共振）， 以及用它來測謊，還有……

"Gene patents?"

哦，當然，還有" 基因專利 "

"Yes, you know, patents on human genes."

“ 基因專利？”

"No!

“ 是的，你知道的，人類基因專利 ”

You're telling me that the US government

“ 不可能！

has been issuing patents on part of the human body?

你是在跟我說，美國政府

That can't be right."

已經對人體的部位授予專利？

I went back to my office and sent Chris three articles.

這不對吧！ ”

And 20 minutes later, he came bursting in my office.

我回到我的辦公室， 給 Chris 發了三篇文章。

"Oh my god! You're right! Who can we sue?"

20分鐘後，他衝進來我的辦公室。

(Laughter)

“ 天哪！你是對的！我們可以告誰？ ”

Now Chris is a really brilliant lawyer,

（笑聲）

but he knew almost nothing about patent law

Chris 是一名傑出的律師，

and certainly nothing about genetics.

但是他幾乎完全不懂專利法，

I knew something about genetics, but I wasn't even a lawyer,

而且肯定不懂遺傳學。

let alone a patent lawyer.

我懂一點遺傳學， 但我連律師都不是，

So clearly we had a lot to learn before we could file a lawsuit.

更別說是個專利律師了。

First, we needed to understand exactly what was patented

所以很顯然的，在打官司之前， 我們需要學很多東西。

when someone patented a gene.

首先，我們需要先搞懂

Gene patents typically contain dozens of claims,

當有人為基因申請專利時， 究竟是什麼被授予了專利。

but the most controversial of these are to so-called "isolated DNA" --

基因專利基本上內含了很多權利，

namely, a piece of DNA that has been removed from a cell.

但是最有爭議的是 所謂的“ 離體DNA（亦稱：單離DNA） ”--

Gene patent proponents say,

顧名思義，就是從細胞中 分離出來的 DNA 片段。

"See? We didn't patent the gene in your body,

基因專利的支持者聲稱，

we patented an isolated gene."

" 你看？ 我們不是對你 身體中的基因申請專利，

And that's true,

我們是對離體基因申請專利。 ”

but the problem is that any use of the gene requires that it be isolated.

這是事實，

And the patents weren't just to a particular gene that they isolated,

但問題是，任何基因上的運用， 都需要把基因分離出來。

but on every possible version of that gene.

故獲取專利的部分， 並非他們分離出來的特定基因，

So what does that mean?

而是那個基因的每個可能版本。

That means that you can't give your gene to your doctor

所以這意味著什麼？

and ask him or her to look at it,

這意味著， 你不能把你的基因給你的醫生，

say, to see if it has any mutations,

請他或她幫你檢查，

without permission of the patent holder.

像是，檢查是否有變異，

It also means that the patent holder has the right to stop anyone

在沒有專利持有者的同意下。

from using that gene in research or clinical testing.

也就是說，專利持有者 有權利阻止任何人

Allowing patent holders,

使用該基因從事研究或臨床試驗。

often private companies,

允許專利持有者

to lock up stretches of the human genome was harming patients.

通常是私人企業， 他們閉鎖住開發人類基因組的行為

Consider Abigail,

會傷害到患者的權利。

a 10-year-old with long QT syndrome,

想一下，Abigail，

a serious heart condition that, if left untreated,

一位10歲患有長QT綜合症的小女生，

can result in sudden death.

長QT綜合症是一種 嚴重的心臟疾病，如果不治療，

The company that obtained a patent on two genes associated with this condition

可能會引發猝死。

developed a test to diagnose the syndrome.

有個公司握有兩個 與這種疾病相關基因的專利，

But then they went bankrupt and they never offered it.

他們開發了一種 診斷此病症的化驗方式。

So another lab tried to offer the test,

但之後他們倒閉了， 而他們從未提供此項服務。

but the company that held the patents threatened to sue the lab

於是另一個實驗室 嘗試提供這項化驗，

for patent infringement.

但是持有這項專利的公司 告發那個實驗室

So as a result,

專利侵權。

for 2 years, no test was available.

所以，結果是，

During that time,

兩年內，沒有人提供化驗服務。

Abigail died of undiagnosed long QT.

這段期間，

Gene patents clearly were a problem and were harming patients.

Abigail 因未診斷出 長 QT 綜合症而去世。

But was there a way we could challenge them?

基因專利顯然是個問題， 並且損害患者的權利。

Turns out that the Supreme Court

但是我們有沒有方法 可以挑戰他們呢？

has made clear through a long line of cases,

其實，最高法院

that certain things are not patent eligible.

透過一系列的判例， 已經清楚地表明，

You can't patent products of nature --

有些東西是不能申請專利的。

the air, the water, minerals, elements of the periodic table.

你不能對自然界中 的物質申請專利--

And you can't patent laws of nature --

像是，空氣、水、礦物、 元素週期表裡的物質。

the law of gravity, E = mc2.

你也不能對自然法則申請專利--

These things are just too fundamental and must remain free to all

像是萬有引力公式 E=mc2。

and reserved exclusively to none.

這些東西太基本了， 必須對所有人保持免費，

It seemed to us that DNA,

且不能被任何人獨自佔有。

the most fundamental structure of life,

DNA 對我們而言，

that codes for the production of all of our proteins,

像是生命最本質的結構，

is both a product of nature and a law of nature,

它對我們所有的蛋白質產物編碼，

regardless of whether it's in our bodies

既是自然界的物質， 也是自然的法則，

or sitting in the bottom of a test tube.

無論它是在我們的體內，

As we delved into this issue,

或是沉在一根試管底部。

we traveled all over the country to speak with many different experts --

我們不斷深入這個問題，

scientists, medical professionals, lawyers, patent lawyers.

我們飛到全國各地， 和許多不同的專家談話--

Most of them agreed that we were right as a matter of policy,

科學家、醫療專家、律師、專利律師。

and, at least in theory, as a matter of law.

絕大多數都同意， 在政策層面我們是正確的，

All of them thought

並且在法律層面， 至少在理論上是正確的。

our chances of winning a gene-patent challenge

但他們全都認為

were about zero.

我們挑戰基因專利贏的機率

Why is that?

幾乎是零。

Well, the patent office had been issuing these patents

為什麼呢？

for more than 20 years.

好吧，因為專利局核發這些專利

There were literally thousands of patents on human genes.

已經超過 20 年了，

The patent bar was deeply entrenched in the status quo,

的確已經有數千個人類基因專利。

the biotech industry had grown up around this practice,

專利的測驗評量已行之有年，

and legislation to ban gene patents had been introduced

生物科技產業在這個 機制下蓬勃發展，

year after year in Congress,

立法禁止基因專利的提案

and had gone absolutely nowhere.

每年都會在國會被提出來審議，

So the bottom line:

但已經不知道被丟到哪裡去了。

courts just weren't going to be willing to overturn these patents.

所以底線是：

Now, neither Chris nor I were the type to shy away from a challenge,

法院就是沒有意願 去推翻這些專利。

and hearing, "Being right just isn't enough,"

現在，無論是 Chris 或我 都不是那種臨陣脫逃的人，

seemed all the more reason to take on this fight.

而且聽到“正確又能何哉”，

So we set out to build our case.

更激起我們奮戰的理由。

Now, patent cases tend to be: Company A sues Company B

所以，我們打算建立 我們的訴訟方式，

over some really narrow, obscure technical issue.

現在，專利訴訟法案通常是： A公司告B公司，

We weren't really interested in that kind of case,

總是在一些非常狹隘、 晦澀的技術問題上打轉，

and we thought this case was much bigger than that.

我們對這類的問題真的不感興趣，

This was about scientific freedom, medical progress,

而且我們認為這個案件 要比那些重大得多。

the rights of patients.

這個案件關乎 科學自由、醫療進步、

So we decided we were going to develop a case

病患權利。

that was not like your typical patent case --

所以，所以我們決定我們要做的，

more like a civil rights case.

和你通常看到的專利官司不同--

We set out to identify a gene-patent holder

它更像是公民權利的官司。

that was vigorously enforcing its patents

我們打算去找一位 強硬推行它的專利的

and then to organize a broad coalition of plaintiffs and experts

這樣一個基因專利持有者，

that could tell the court

然後組織一個原告和專家的大聯盟，

about all the ways that these patents were harming patients and innovation.

去告訴法院

We found the prime candidate to sue in Myriad Genetics,

這些專利損害病人 並阻礙創新的種種劣跡。

a company that's based in Salt Lake City, Utah.

我們發現 Myriad Genetics 可以作為我們要告發的主要目標，

Myriad held patents on two genes,

這是一家總部設在 猶他州鹽湖城的公司，

the BRCA1 and the BRCA2 genes.

Myriad 這家公司持有兩個基因專利，

Women with certain mutations along these genes

分別是 BRCA1 和 BRCA2 基因，

are considered to be at a significantly increased risk

攜帶有這兩個基因某些變種的女性，

of developing breast and ovarian cancer.

罹患乳腺癌和卵巢癌

Myriad had used its patents to maintain

的風險會顯著升高。

a complete monopoly on BRCA testing in the United States.

Myriad 利用這項專利來維持

It had forced multiple labs that were offering BRCA testing to stop.

在美國境內 BRCA 檢測市場 的完全壟斷地位。

It charged a lot of money for its test --

它迫使多個提供 BRCA 測試 的實驗室停止這項服務。

over 3,000 dollars.

它收取相當昂貴的檢測費用--

It had stopped sharing its clinical data

超過3,000美金。

with the international scientific community.

它已經停止與國際科學界

And perhaps worst of all,

共享它的臨床數據。

for a period of several years,

以及可能最糟糕的，

Myriad refused to update its test to include additional mutations

曾經有幾年，

that had been identified by a team of researchers in France.

Myriad 公司拒絕在他們的檢測中更新

It has been estimated that during that period,

已被法國一個研究團隊 鑑別出來的其他變種數據，

for several years,

據估計，在此期間，

as many as 12 percent of women undergoing testing

有數年，

received the wrong answer --

將近12％的婦女進行的測試

a negative test result that should have been positive.

得到了錯誤檢測結果--

This is Kathleen Maxian.

原本陽性反應卻被檢測成 陰性反應（假陰性）。

Kathleen's sister Eileen developed breast cancer at age 40

這位是 Kathleen Maxian，

and she was tested by Myriad.

Kathleen 的姊姊在40歲時得到乳腺癌，

The test was negative.

她是找 Myriad 檢測的。

The family was relieved.

測試結果是呈現陰性，

That meant that Eileen's cancer most likely didn't run in the family,

家人如釋重負，

and that other members of her family didn't need to be tested.

這說明艾琳的癌症 很可能不會在家族中重現。

But two years later,

其他的家族成員 也不需要再接受檢驗。

Kathleen was diagnosed with advanced-stage ovarian cancer.

但，二年後，

It turned out that Kathleen's sister was among the 12 percent

Kathleen 被診斷出卵巢癌末期，

who received a false-negative test result.

原來卡瑟琳的姐姐就是那12%

Had Eileen received the proper result,

得到了假陰性結果的病人之一。

Kathleen would have then been tested,

Eileen 如果得到正確的結果，

and her ovarian cancer could have been prevented.

Kathleen 就會去做化驗，

Once we settled on Myriad,

那她的卵巢癌就可以被提早預防，

we then had to form a coalition of plaintiffs and experts

我們確定目標為 Myriad 後，

that could illuminate these problems.

我們需要組建一個

We ended up with 20 highly committed plaintiffs:

能夠陳述這些問題的原告和專家團。

genetic counselors,

我們找到了 20 位非常積極的原告：

geneticists who had received cease and desist letters,

遺傳學顧問、

advocacy organizations,

曾經收到停止和終止信函的遺傳學家、

four major scientific organizations that collectively represented

理念相同的組織、

more than 150,000 scientists and medical professionals,

四個主要科學組織，集中起來代表了

and individual women who either couldn't afford Myriad's test,

超過 15 萬名科學工作者和醫療專家，

or who wanted to obtain a second opinion but could not,

及幾位無力負擔 Myriad 檢測的各別女性，

as a result of the patents.

或者因為此專利的關係，

One of the major challenges we had in preparing the case

想要獲得其它醫學意見，但無法取得的人。

was figuring out how best to communicate the science.

我們準備訴訟時其中一個最大挑戰是

So in order to argue that what Myriad did was not an invention,

要找出如何用最佳的方式來闡述科學。

and that isolated BRCA genes were products of nature,

所以為了辯明 Myriad 所為並不是發明，

we had to explain a couple of basic concepts, like:

分離出來的 BRCA 基因是自然的產物，

What's a gene? What's DNA?

我們得舉例解釋這些基本概念，像是：

How is DNA isolated, and why isn't that an invention?

基因是什麼？DNA 是什麼？

We spent hours and hours with our plaintiffs and experts,

DNA要如何被分離？ 為什這個東西不是發明？

trying to come up with ways of explaining these concepts

我們和原告和專家團花了很多時間，

simply yet accurately.

嘗試地想出一些簡單又精確的方法

And we ended up relying heavily on the use of metaphors,

來解釋這些概念。

like gold.

最後我們相當倚賴用比喻的方式，

So isolating DNA --

像是黃金，

it's like extracting gold from a mountain

所以分離 DNA--

or taking it out of a stream bed.

像是從山裡挖出黃金，

You might be able to patent the process for mining the gold,

或是從河床裡掏出黃金。

but you can't patent the gold itself.

你或許可以為採集黃金 的流程申請專利，

It might've taken a lot of hard work and effort

但你不能把黃金本身申請專利。

to dig the gold out of the mountain;

從山裡面開採黃金也許

you still can't patent it, it's still gold.

需要花很大的功夫及心力；

And the gold, once it's extracted,

但你仍舊不能把黃金申請專利， 黃金還是黃金。

can clearly be used for all sorts of things

而黃金，一旦被萃取出來，

that it couldn't be used for when it was in the mountain;

顯然可以被用於各種

you can make jewelry out of it for example --

它埋在山中時不能實現的用途；

still can't patent the gold, it's still gold.

例如，你可以把它製成珠寶飾品--

So now it's 2009, and we're ready to file our case.

但仍然不能把黃金申請專利， 它仍然是黃金。

We filed in federal court in the Southern District of New York,

2009年，我們準備遞交我們的案件，

and the case was randomly assigned to Judge Robert Sweet.

我們遞交到紐約南區的聯邦法院，

In March 2010, Judge Sweet issued his opinion --

案件被隨機指派到 一位 Robert Sweet 法官，

152 pages --

2010年3月Sweet法官發表他的看法--

and a complete victory for our side.

152頁--

In reading the opinion,

對我們這邊完全有利，

we could not get over how eloquently he described the science in the case.

在閱讀他的看法時，

I mean, our brief -- it was pretty good,

我們搞不懂，他在描述科學時 怎麼那麼頭頭是道，

but not this good.

我的意思是，我們的聲明--已經相當不錯，

How did he develop such a deep understanding of this issue

但沒他的好，

in such a short time?

他是如何在這樣的短時間內

We just could not comprehend how this had happened.

建立出對這此議題這麼深厚的認知？

So it turned out,

我們真的無法理解這是怎麼發生的。

Judge Sweet's clerk working for him at the time,

原來，

was not just a lawyer --

當時 Sweet 法官底下的書記員

he was a scientist.

不僅是位律師--

He was not just a scientist --

也是位科學家，

he had a PhD in molecular biology.

且不僅是科學家，

(Laughter)

他還有分子生物學的博士學位，

What an incredible stroke of luck!

（笑聲）

Myriad then appealed

真是太幸運了！

to the US Court of Appeals for the Federal Circuit.

Myriad 隨後上訴到

And here things got really interesting.

美國聯邦巡迴上訴法院。

First, in a pivotal moment of this case,

然後事情就變得非常有意思了。

the US government switched sides.

首先，本案中的一個關鍵時刻，

So in the district court the government submitted a brief on Myriad's side.

美國政府倒戈了，

But now in direct opposition to its own patent office,

在地方法院上，政府遞交了 一份簡述支持 Myriad。

the US government files a brief that states that is has

但是這回美國政府 直接反對它自己的專利局，

reconsidered this issue in light of the district court's opinion,

美國政府發了一個簡短的聲明，

and has concluded that isolated DNA is not patent eligible.

他們基於地區法庭的判決， 已重新考慮了問題，

This was a really big deal,

並總結出" 離體DNA " 不具備專利適格性，

totally unexpected.

這簡直是大逆轉，

The Court of Appeals for the Federal Circuit

完全意想不到。

hears all patent cases,

聯邦巡迴上訴法院

and it has a reputation for being very, very pro-patent.