TaniaSimoncelli_2014X[塔尼娅·西蒙切利][我是怎么在基因专利大战中获胜的].pdf

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1、www.XiYuS锡育软件It was an afternoon in the fall of 2005.那是 2005 年秋日的一个下午。00:13I was working at the ACLU as the organizations scienceadvisor.我时任 ACLU（美国公民自由联盟）的科学顾问。00:17I really,really loved my job,but I was having one of thosedays where I was feeling just a little bit discouraged.我真的非常喜欢我的工作,但是那段时间我时常

2、 感到有一点点受挫。00:21So I wandered down the hallway to my colleague ChrisHansens office.于是我经过走廊晃荡到同事克里斯汉森的办公室。00:29Chris had been at the ACLU for more than 30 years,so he haddeep institutional knowledge and insights.克里斯在 ACLU 供职三十多年了,他对机构有深刻的了解和想法。00:34I explained to Chris that I was feeling a little bit

3、stuck.我向克里斯解释我为什么觉得有些举步维艰。00:41I had been investigating a number of issues at theintersection of science and civil liberties-super interesting.我当时在调查一系列 处在科学和公民自由十字路口的问题非常有意思。00:45But I wanted the ACLU to engage these issues in a muchbigger way,in a way that could really make a difference.但是我希望 ACLU

4、 能够在更高的层面参与这些问题。以一种能真正做出改变的方式。00:53discouraged:adj.气馁的/v.劝阻(discourage的过去分词);使失去勇气 wandered:vi.徘徊;漫步;迷路;离题/vt.游荡,漫游hallway:n.走廊;门厅;玄关 institutional:adj.制度的;制度上的/学会的;由来已久的;习以为常的/公共机构的;慈善机构的insights:n.洞察力;眼力;深刻见解(insight的复数)intersection:n.交叉;十字路口;交集;交叉点 liberties:n.自由(liberty的复数)in a way:在某种程度上;有点儿;十分

5、激动 make a difference:有影响,有关系So Chris cut right to the chase,and he says,Well,of all theissues youve been looking at,what are the top five?克里斯开门见山地说,“那好,所有你正在考虑的问题里面,排前五位的是什么？”01:01Well,theres genetic discrimination,and reproductivetechnologies,and biobanking,and.“我想应该是遗传歧视,生育技术,生物样本库,还有01:07oh,there

6、s this really cool issue,functional MRI and using itfor lie detection,and.哦,这个真的很酷,功能性 MRI（核磁共振成像）,用它来测谎,还有01:14oh,and of course,theres gene patents.哦,当然,还有基因专利。”01:19Gene patents?“基因专利？”01:21Yes,you know,patents on human genes.“是的,你知道的,授予人类基因专利。”01:23No!“不可能！01:26Youre telling me that the US govern

7、ment has been issuingpatents on part of the human body?你是说,美国政府 正在对人身体的部分授予专利？01:27That cant be right.这怎么可能嘛。”01:33I went back to my office and sent Chris three articles.我回到我的办公室,给克里斯发了三篇文章。01:35And 20 minutes later,he came bursting in my office.20分钟以后,他冲进我的办公室。01:39Oh my god!Youre right!Who can we

8、sue?“天哪！你说中了！我们可以起诉谁？”01:43discrimination:n.歧视；区别，辨别；识别力 reproductive:adj.生殖的;再生的;复制的 functional:adj.功能的 patents:n.专利专利(patent的复数形式);专利权 issuing:n.发行物;争论点;期刊号/v.发行(issue的ing形式);分配;流出 bursting:adj.充满的;渴望的/v.爆炸;猛然打开;突然开始(burst的ing形式)(Laughter)Now Chris is a really brilliant lawyer,but he knewalmost no

9、thing about patent law and certainly nothingabout genetics.（笑声）克里斯是一名杰出的律师,但是他几乎完全不懂专利法,而且肯定不懂遗传学。01:47I knew something about genetics,but I wasnt even a lawyer,let alone a patent lawyer.我懂一点遗传学,但我连律师都不是,更别说专利律师了。01:57So clearly we had a lot to learn before we could file a lawsuit.所以很显然,在打官司之前,我们需要学

10、很多东西。02:02First,we needed to understand exactly what was patented首先,我们需要搞清楚当有人为基因申请专利时,究竟是什么被授予了专利。02:06TED演讲者：Tania Simoncelli|塔尼娅西蒙切利演讲标题：Should you be able to patent a human gene?|我是怎么在基因专利大战中获胜的内容概要：A decade ago,US law said human genes were patentable which meant patentholders had the right to s

11、top anyone from sequencing,testing or even looking at a patentedgene.Troubled by the way this law both harmed patients and created a barrier to biomedicalinnovation,Tania Simoncelli and her colleagues at the ACLU challenged it.In this riveting talk,hear the story of how they took a case everybody to

12、ld them they would lose all the way to theSupreme Court.人类基因可以被授予专利吗？2005 年，当塔尼娅西蒙切利首次注意到这个复杂的问题，美国专利法认可此行为因而意味着专利持有者有权阻止任何他人测序、检测甚至诊断病人的基因。因为法律这样做不但损害了病人的利益，而且为生物医疗创新制造了阻碍，西蒙切利和她在 ACLU（美国公民自由同盟）的同事对这一现象发起了挑战。在本次掷地有声的演讲中，听一听他们如何把一个所有人都认为他们必败无疑的案子一直打到（美国）最高法院。First,we needed to understand exactly wha

13、t was patentedwhen someone patented a gene.竟是什么被授予了专利。02:06Gene patents typically contain dozens of claims,but the mostcontroversial of these are to so-called isolated DNA-namely,a piece of DNA that has been removed from a cell.基因专利通常包含几十条要求,但是最矛盾的是所谓的“离体 DNA”也就是从细胞中移出的DNA 片段。02:11Gene patent propon

14、ents say,See?We didnt patent thegene in your body,we patented an isolated gene.基因专利的支持者称,“看见了吗？我们没有对你身体中的基因申请专利,我们是为离体的基因申请专利。”02:26And thats true,but the problem is that any use of the generequires that it be isolated.这话是没错,但问题在于,无论如何,要使用基因,就必须先进行分离。02:33patent:vt.授予专利;取得的专利权/adj.专利的;新奇的;显然的/n.专利权;

15、执照;专利品 genetics:n.遗传学 let alone:更不必说;听任;不打扰 patented:adj.专利的 typically:adv.代表性地;作为特色地 controversial:adj.有争议的；有争论的 so-called:adj.所谓的；号称的 proponents:n.支持者;建议者(proponent的复数)And the patents werent just to a particular gene that theyisolated,but on every possible version of that gene.而被授予专利的,并非他们分离的某个特定的

16、基因,而是那个基因每一种可能的版本。02:42So what does that mean?那么这意味着什么呢？02:50That means that you cant give your gene to your doctor andask him or her to look at it,say,to see if it has any mutations,without permission of the patent holder.这意味着你不能把你的基因给医生,然后请他/她检查,比如说,检查是否有变异,如果你没有专利持有者的授权。02:51It also means that th

17、e patent holder has the right to stopanyone from using that gene in research or clinical testing.这也意味着专利持有者有权阻止任何人 使用该基因从事研究或临床试验。03:02Allowing patent holders,often private companies,to lock upstretches of the human genome was harming patients.允许专利持有者,通常是私有企业,关起开发人类基因组的大门,会损害患者的利益。03:10Consider Abig

18、ail,a 10-year-old with long QT syndrome,aserious heart condition that,if left untreated,can result insudden death.比如,阿比盖尔,一个10岁的孩子,患有长 QT 综合症,这是一种严重的心脏疾病,如果不治疗,可能引发猝死。03:18The company that obtained a patent on two genesassociated with this condition developed a test to diagnosethe syndrome.有个公司拥有与这种

19、疾病有关的两个基因的专利,他们开发了一种针对此病症的检验方法。03:28mutations:n.遗突变;变化;转变(mutation的复数形式)clinical:adj.临床的；诊所的 stretches:伸张 genome:n.基因组;染色体组 harming:损害/伤害/免于伤害/将不受损害 syndrome:n.临床综合征;综合症状;并发症状;校验子;并发位untreated:adj.未经处理的;未经治疗的 result in:导致,结果是 obtained:v.获得(obtain的过去分词)diagnose:vt.诊断;断定/vi.诊断;判断But then they went ban

20、krupt and they never offered it.但随后公司倒闭了,还没来得及推出这项检测服务。03:35So another lab tried to offer the test,but the company thatheld the patents threatened to sue the lab for patentinfringement.于是另一个实验室尝试提供这种检测,但是这家持有专利的公司起诉那个了实验室 专利侵权。03:39So as a result,for 2 years,no test was available.所以,结果是,两年内,没有人提供这种检

21、测服务。03:45During that time,Abigail died of undiagnosed long QT.在此期间,阿比盖尔因未诊断出长 QT 症去世。03:50Gene patents clearly were a problem and were harmingpatients.基因专利明显是个问题,并且在损害患者的利益。03:55But was there a way we could challenge them?但是我们有没有办法挑战他们呢？03:59Turns out that the Supreme Court has made clear through al

22、ong line of cases,that certain things are not patent eligible.其实,（美国）最高法院 通过一系列的判例已经清楚地表明,有些东西是不能申请专利的。04:02You cant patent products of nature-the air,the water,minerals,elements of the periodic table.你不能为自然界的产物申请专利 空气、水、矿产、周期表里的元素。04:10And you cant patent laws of nature-the law of gravity,E=mc2.你也不

23、能为自然规律申请专利 引力定律,E=mc2（质能方程）,04:19These things are just too fundamental and must remain freeto all and reserved exclusively to none.这些东西太基础了,必须对所有人免费开放,不该被任何人独自占有。04:24infringement:n.侵犯;违反 undiagnosed:adj.临床未确诊的;尚未找出原因的 Supreme:adj.最高的;至高的;最重要的/n.至高;霸权 eligible:adj.合格的，合适的；符合条件的；有资格当选的/n.合格者；适任者；有资格者

24、 minerals:n.矿物;矿产,矿产品(mineral的复数);矿物质 periodic:adj.周期的；定期的 reserved:adj.保留的,预订的;缄默的,冷淡的;包租的/v.保留(reserve的过去分词)exclusively:adv.唯一地；专有地；排外地It seemed to us that DNA,the most fundamental structure oflife,that codes for the production of all of our proteins,isboth a product of nature and a law of nature,

25、regardless ofwhether its in our bodies or sitting in the bottom of a testtube.对我们来说,似乎 DNA,生命最本质的结构,掌控所有蛋白质生产的编码,既是自然界的产物,也是自然规律,无论它是在我们的体内,还是沉在一根试管底部。04:32As we delved into this issue,we traveled all over the countryto speak with many different experts-scientists,medical我们不断深入这个问题,在国内四处奔波,和许多专家交流 科

26、学家、医疗专家、律师、专利律师。04:48to speak with many different experts-scientists,medicalprofessionals,lawyers,patent lawyers.师。04:48Most of them agreed that we were right as a matter of policy,and,at least in theory,as a matter of law.绝大多数都同意,在政策层面我们是正确的,并且在法律层面,至少在理论上是正确的。04:58All of them thought our chances o

27、f winning a gene-patentchallenge were about zero.但他们全都认为 我们挑战基因专利授权的成功概率 几乎为零。05:06Why is that?为什么呢？05:13Well,the patent office had been issuing these patents formore than 20 years.因为专利局签发这些专利 已经超过 20 年了。05:15www.XiYuS锡育软件There were literally thousands of patents on human genes.毫不夸张地说,现在已经有上千个人类基因专利

28、。05:20The patent bar was deeply entrenched in the status quo,thebiotech industry had grown up around this practice,andlegislation to ban gene patents had been introduced yearafter year in Congress,and had gone absolutely nowhere.专利律师已经深陷其中,生物技术产业已经通过这个司法实践壮大,禁止基因专利的立法提案 年年在国会被提出,但很显然根本没出国会的门。05:24pr

29、oteins:n.生化蛋白质(protein复数)regardless of:不顾,不管 delved:vi.钻研;探究;挖/vt.钻研;探究;挖/n.穴;洞professionals:n.管理专业人员(professional的复数)entrenched:adj.根深蒂固的;确立的,不容易改的/v.确立;保证;挖掘壕沟(entrench的过去分词)biotech:abbr.生物技术;生物科技(biotechnology)legislation:n.立法；法律 year after year:年复一年地;每年So the bottom line:courts just werent going

30、 to be willing tooverturn these patents.所以归根结底:法院就是不愿意去推翻这些专利。05:39Now,neither Chris nor I were the type to shy away from achallenge,and hearing,Being right just isnt enough,只不过,我和克里斯都不是那种遇到挑战就退缩的人,听到“站在正义一边还不够,”05:44seemed all the more reason to take on this fight.这就更值得我们去为此战斗。05:52So we set out to

31、 build our case.所以我们着手准备自己的案件。05:56Now,patent cases tend to be:Company A sues Company Bover some really narrow,obscure technical issue.现在,专利案通常是:公司 A 起诉公司 B,只针对一些非常局限、隐晦的技术问题。05:59We werent really interested in that kind of case,and wethought this case was much bigger than that.我们对那种案件并不十分感兴趣,我们认为这个

32、案件要比那些重大得多。06:06This was about scientific freedom,medical progress,therights of patients.这个案件关乎科学自由,医疗进步,患者权利。06:11So we decided we were going to develop a case that was notlike your typical patent case-more like a civil rights case.所以我们决定要做和你们通常看到的 专利案不同的事情 它更像是针对公民权利的申诉。06:15We set out to identify

33、 a gene-patent holder that wasvigorously enforcing its patents and then to organize abroad coalition of plaintiffs and experts that could tell thecourt about all the ways that these patents were harmingpatients and innovation.我们着手寻找这样一个基因专利持有者:他要非常强硬地推行专利;然后组织一个广泛的原告和专家联盟 来告诉法庭 这些专利侵害病人、阻碍创新的种种劣迹。06

34、:24bottom line:结果;概要;帐本底线 overturn:vt.推翻;倾覆;破坏/vi.推翻;倾覆/n.倾覆;周转;破灭 shy away:回避;避开 all themore:adv.更加 set out:出发;开始;陈述;陈列 sues:v.起诉(sue的第三人称单数形式);控告 vigorously:adv.精神旺盛地,活泼地 enforcing:强制执行/施行 coalition:n.联合;结合,合并 plaintiffs:n.原告 innovation:n.创新,革新;新方法We found the prime candidate to sue in Myriad Gene

35、tics,acompany thats based in Salt Lake City,Utah.我们发现 Myriad Genetics可以作为起诉的主要目标。这是一家总部设在犹他州盐湖城的公司。06:41Myriad held patents on two genes,the BRCA1 and theBRCA2 genes.Myriad 持有两个基因的专利,他们开发了一种针对此病症的检验方法。06:48Women with certain mutations along these genes areconsidered to be at a significantly increase

36、d risk ofdeveloping breast and ovarian cancer.携带有这两个基因某些变异的女性 罹患乳腺癌和卵巢癌 的风险会显着升高。06:55Myriad had used its patents to maintain a completemonopoly on BRCA testing in the United States.Myriad 公司使用他们的专利来维持 美国境内化验BRCA 的全面垄断地位。07:03It had forced multiple labs that were offering BRCA testing tostop.他们强行叫停了

37、数个提供 BRCA化验的实验室。07:10It charged a lot of money for its test-over 3,000 dollars.他们对化验收取高额费用 超过三千美元。07:14It had stopped sharing its clinical data with the internationalscientific community.他们停止向国际科学界共享临床数据。还有可能最糟糕的,07:19And perhaps worst of all,for a period of several years,Myriadrefused to update its

38、 test to include additional mutationsthat had been identified by a team of researchers in France.还有可能最糟糕的,曾经有几年,Myriad 拒绝在他们的化验中增加 由法国的一个研究团队鉴别出来的新变异类型。07:24Myriad:adj.无数的;种种的/n.无数,极大数量;无数的人或物 Utah:n.美国犹他州 significantly:adv.意味深长地;值得注目地ovarian:adj.解剖卵巢的;子房的 monopoly:n.垄断；垄断者；专卖权 labs:n.实验室It has been

39、 estimated that during that period,for severalyears,as many as 12 percent of women undergoing testingreceived the wrong answer-a negative test result thatshould have been positive.据估计,在此期间,数年间,有近 12%接受化验的女性 得到了错误的结果 也就是本应该是阳性的阴性结果（假阴性）。07:36This is Kathleen Maxian.这是卡瑟琳马克西安。07:53Kathleens sister Eil

40、een developed breast cancer at age 40and she was tested by Myriad.卡瑟琳的姐姐艾琳 40 岁得了乳腺癌。她曾做过Myriad 的化验,07:56The test was negative.结果是阴性。08:02The family was relieved.这家人松了口气。08:03That meant that Eileens cancer most likely didnt run in thefamily,and that other members of her family didnt need tobe tested

41、.这说明艾琳的癌症很可能不会在家族中重现。她的家人也不需要再接受化验。08:05But two years later,Kathleen was diagnosed with advanced-stage ovarian cancer.但是两年后,卡瑟琳被诊断出晚期卵巢癌。08:12It turned out that Kathleens sister was among the 12 percentwho received a false-negative test result.原来卡瑟琳的姐姐就是那 12%得到了假阴性结果的病人之一。08:18Had Eileen received th

42、e proper result,Kathleen would havethen been tested,and her ovarian cancer could have beenprevented.如果艾琳得到了正确的化验结果,卡瑟琳就也会去做化验,她的卵巢癌就可能得到预防。08:26Once we settled on Myriad,we then had to form a coalitionof plaintiffs and experts that could illuminate theseproblems.我们确定目标为 Myriad 后,就需要组建一个 能够陈述这些问题的原告和

43、专家团。08:36estimated:adj.估计的;预计的;估算的 undergoing:vt.经历,经受;忍受 diagnosed:v.诊断;被诊断为(diagnose的过去分词)prevented:v.阻止;避免;被阻止(prevent的过去式,过去分词)illuminate:vt.阐明,说明;照亮;使灿烂;用灯装饰/vi.照亮We ended up with 20 highly committed plaintiffs:geneticcounselors,geneticists who had received cease and desistletters,advocacy orga

44、nizations,four major scientificorganizations that collectively represented我们找到了 20 位非常积极的原告:遗传学咨询顾问,收到叫停信件的遗传学家:支持我们的组织,四个主要科学组织,集中代表了08:44more than 150,000 scientists and medical professionals,andindividual women who either couldnt afford Myriads test,orwho wanted to obtain a second opinion but cou

45、ld not,as aresult of the patents.超过 15 万名科学工作者和医疗专家,以及无力支付 Myriad 的检测 或者希望有其他选择,但因为专利原因 无法实现的女性个体。08:58One of the major challenges we had in preparing the casewas figuring out how best to communicate the science.我们在准备案件期间遇到的主要挑战是,搞清楚如何最有效地阐述科学观点。09:12So in order to argue that what Myriad did was not

46、 aninvention,and that isolated BRCA genes were products ofnature,we had to explain a couple of basic concepts,like:所以,为了辩明Myriad 的成果并不属于创新,以及离体的 BRCA 基因是自然界的产物,我们必须解释一些基本概念,比如:09:19Whats a gene?Whats DNA?基因是什么？DNA 是什么？09:29How is DNA isolated,and why isnt that an invention?如何分离 DNA,以及为什么这不是创新？09:32W

47、e spent hours and hours with our plaintiffs and experts,trying to come up with ways of explaining these conceptssimply yet accurately.我们和原告以及专家团花费了无数日夜,努力寻找能够简洁又不失准确地解释这些概念的方式。09:37counselors:n.辅导员;顾问(counselor的复数形式)geneticists:n.遗传学者 desist:vi.停止;断念 advocacy:n.主张;拥护;辩护 collectively:adv.共同地,全体地 conc

48、epts:n.概念,观念;思想(concept复数形式)come up with:提出;想出;赶上accurately:adv.精确地,准确地And we ended up relying heavily on the use of metaphors,like gold.我们最终非常依赖比喻,比如说黄金。09:46So isolating DNA-its like extracting gold from a mountainor taking it out of a stream bed.因此,分离 DNA 就像从大山中挖出黄金,或者从溪流河床里淘出黄金。09:51You might be

49、 able to patent the process for mining the gold,but you cant patent the gold itself.你或许可以为采集黄金的流程申请专利,但你不能为黄金本身申请专利。09:59It mightve taken a lot of hard work and effort to dig the goldout of the mountain;you still cant patent it,its still gold.你可能要靠无数艰辛努力 才能从山中挖到黄金;但你仍旧不能为它申请专利,黄金还是黄金。10:05And the go

50、ld,once its extracted,can clearly be used for allsorts of things that it couldnt be used for when it was in themountain;you can make jewelry out of it for example-stillcant patent the gold,its still gold.而黄金,一旦被挖掘出来,显然可以被用于各种 它藏在山中时不能实现的用途;比如,你可以把它做成珠宝 但仍然不能为金子申请专利,金子还是金子。10:13So now its 2009,and we