返回首页

JohnWilbanks_2012G-_让我们分享医疗数据_
So I have bad news, I have good news, and I have a task. 我有些好消息也有些坏消息 也有个任务。
So the bad news is that we all get sick.
I get sick. You get sick. 我会生病,你会生病。
And every one of us gets sick, and the question really is, how sick do we get? Is it something that kills us? 我们每一个人都会生病。问题是: 我们病得有多重？会不会致命？
Is it something that we survive? 我们能不能挺过来？
Is it something that we can treat ?
treat:v.治疗;处理;招待;款待;n.款待;乐事;乐趣;
And we've gotten sick as long as we've been people.
as long as:conj.只要;长达;如果;既然;
And so we've always looked for reasons to explain why we get sick. 所以,我们常会寻找得病的原因。
And for a long time, it was the gods, right? 很长时间以来,我们认为是和上帝有关,
The gods are angry with me, or the gods are testing me, right? Or God, singular , more recently , is punishing me or judging me. 在惩罚我或审判我。
singular:adj.单数的;单一的;非凡的;异常的;n.单数; recently:adv.最近;新近;
And as long as we've looked for explanations, we've wound up with something that gets closer and closer to science, which is hypotheses as to why we get sick, and as long as we've had hypotheses about why we get sick, we've tried to treat it as well. 我们不断的寻求生病的原因 我们得到了一些越来越接近科学的假设, 一些我们为什么会得病的假设。 有了这些假设,我们就会尝试去治愈疾病。
wound:n.创伤,伤口;v.使受伤;受伤,伤害; hypotheses:n.假定;臆测(hypothesis的复数);
So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine,"
Canon:n.标准;教规;正典圣经;教士;
and the rules he laid out for testing medicines are actually really similar to the rules we have today, that the disease and the medicine must be the same strength,
disease:n.病,[医]疾病;弊病;vt.传染;使…有病;
the medicine needs to be pure, and in the end we need to test it in people. And so if you put together these themes of a narrative or a hypothesis in human testing, right, you get some beautiful results, even when we didn't have very good technologies . 药物需是纯净的, 最终,我们会进行人体实验 如果你把这些关于人体试验的 即使是在科技不发达的年代。
put together:..放在一起;组合;装配; narrative:n.叙述;故事;讲述;adj.叙事的,叙述的;叙事体的; hypothesis:n.假设; technologies:n.技术;科技(technology的复数);
This is a guy named Carlos Finlay. He had a hypothesis that was way outside the box for his time, in the late 1800s. 在19世纪末期非常有超前的假设
He thought yellow fever was not transmitted by dirty clothing. 他认为黄热病不是由脏衣物
yellow fever:n.黄热病(热带疾病,可导致死亡); transmitted:v.传送;输送;发射;播送;传播;传染;(transmit的过去分词和过去式)
He thought it was transmitted by mosquitoes . 而是由蚊子传播的。
mosquitoes:n.蚊子(mosquito的复数);
And they laughed at him. For 20 years, they called this guy "the mosquito man." But he ran an experiment in people, right? He had this hypothesis, and he tested it in people. 但他在一些人身上进行了实验
So he got volunteers to go move to Cuba and live in tents and be voluntarily infected with yellow fever. 他招了自愿感染黄热病的志愿者
volunteers:n.志愿者; v.自愿做; (volunteer的第三人称单数和复数) voluntarily:adv.自动地;以自由意志; infected:adj.带菌的; v.传染; (infect的过去分词和过去式)
So some of the people in some of the tents had dirty clothes and some of the people were in tents that were full of mosquitos that had been exposed to yellow fever. 另一些 则满是接触过黄热病的蚊子
mosquitos:n.蚊子(mosquito的变形); exposed:adj.无遮蔽的; v.暴露; (expose的过去分词和过去式)
And it definitively proved that it wasn't this magic dust called fomites in your clothes that caused yellow fever. 实验无疑证明了并不是那些
definitively:adv.决定性地;最后地;
But it wasn't until we tested it in people that we actually knew. 如果没有人体实验,我们将无法证明这个结论。
And this is what those people signed up for. 并且这是人们自愿的
This is what it looked like to have yellow fever in Cuba at that time. You suffered in a tent, in the heat, alone, and you probably died. 这就是当时在古巴得黄热病的样子
But people volunteered for this.
volunteered:v.自愿做;义务做;自愿参军;(volunteer的过去分词和过去式)
And it's not just a cool example of a scientific design of experiment in theory. They also did this beautiful thing. 这并不仅是一个很酷的科学实验设计 他们还做了这样一件漂亮的事情
scientific:adj.科学的,系统的;
They signed this document, and it's called an informed consent document. 这个文件叫做知情同意书,志愿者需要签署这个协议
informed:adj.见多识广的; v.通知; (inform的过去分词和过去式) consent:vi.同意;赞成;答应;n.同意;(意见等的)一致;赞成;
And informed consent is an idea that we should be very proud of as a society, right? It's something that separates us from the Nazis at Nuremberg, enforced medical experimentation . It's the idea that agreement to join a study without understanding isn't agreement. 进行强制医学实验的纳粹党区分开来 志愿者的同意必须建立在知晓实验内容的基础上
Nazis:n.纳粹;纳粹党人(nazi的复数); enforced:adj.强迫的;强制性的;v.强制执行;迫使;(enforce的过去分词和过去式) experimentation:n.实验;试验;
It's something that protects us from harm, from hucksters , from people that would try to hoodwink us into a clinical study that we don't understand, or that we don't agree to. 哄骗去参加那些
hucksters:vt.叫卖;讨价还价;n.叫卖的小贩;小商人;吃广告饭的人;vi.叫卖;做小商贩; hoodwink:vt.蒙蔽;欺骗;遮眼; clinical:adj.临床的;诊所的;
And so you put together the thread of narrative hypothesis, experimentation in humans, and informed consent, and you get what we call clinical study, and it's how we do 就是我们今天的临床试验
thread:n.螺纹;线索;思路;脉络;v.穿过;穿(针);纫(针);(使)穿过;
the vast majority of medical work. It doesn't really matter if you're in the north, the south, the east, the west. 无论你来自何方
majority:n.大部分:大多数:多数票:成年人:
Clinical studies form the basis of how we investigate , so if we're going to look at a new drug, right, we test it in people, we draw blood, we do experiments, and we gain consent for that study, to make sure that we're not screwing people over as part of it. 临床研究形成了医学研究的基础 比如说我们要开发一种新药物 来确认我们没有强迫人们参与
investigate:v.调查;研究;审查; screwing:v.用螺丝固定(或拧牢);拧紧;拧上去;(screw的现在分词)
But the world is changing around the clinical study, which has been fairly well established for tens of years if not 50 to 100 years. 临床实验方法已经建立超过10年 如果没有超过50或100年的话
fairly:adv.相当地;公平地;简直; well established:adj.得到确认的; v.已确立起来; (well-establish的过去分词);
So now we're able to gather data about our genomes , but, as we saw earlier, our genomes aren't dispositive . 现如今我们可以得到基因组的信息
genomes:n.[遗]基因组(genome复数); dispositive:adj.(事件,行为等)决定性的;
We're able to gather information about our environment.
And more importantly, we're able to gather information about our choices, because it turns out that what we think of as our health is more like the interaction of our bodies, our genomes, our choices and our environment. 但更重要的是,我们可以记录我们的日常选择 和日常选择共同决定的
interaction:n.[计]交互,相互作用;相互交流;干扰;
And the clinical methods that we've got aren't very good at studying that because they are based on the idea of person-to-person interaction. You interact with your doctor and you get enrolled in the study. 是基于人与人之间的交互 在实验中你只是和你的医生进行交流
person-to-person:adj.私人间的; v.面对面地; enrolled:v.(使)加入;注册;登记;(enroll的过去分词和过去式)
So this is my grandfather. I actually never met him, but he's holding my mom, and his genes are in me, right? 这是我的外公,虽然我从来没见过他
genes:n.基因;(gene的复数)
His choices ran through to me. He was a smoker, like most people were. This is my son. 他吸烟。 这是我的儿子。
So my grandfather's genes go all the way through to him, and my choices are going to affect his health. 我外公的基因也会遗传给他 我的选择会影响他的健康
The technology between these two pictures cannot be more different, but the methodology for clinical studies has not radically changed over that time period. 科技发展日新月异
technology:n.技术;工艺;术语; methodology:n.方法学,方法论; radically:adv.根本上;彻底地;以激进的方式;
We just have better statistics .
statistics:n.统计数字;统计资料;统计学;(statistic的复数)
The way we gain informed consent was formed in large part after World War II, around the time that picture was taken.
That was 70 years ago, and the way we gain informed consent, this tool that was created to protect us from harm, now creates silos . So the data that we collect for prostate cancer or for Alzheimer's trials goes into silos where it can only be used for prostate cancer or for Alzheimer's research. 在前列腺癌或老年痴呆症 临床实验中获取的数据 只能存入用以进行前列腺癌或 老年痴呆症研究的数据孤岛
silos:n.筒仓;粮仓;贮仓(silo的复数); prostate:adj.前列腺的;n.[解剖]前列腺; cancer:n.癌症;恶性肿瘤;
Right? It can't be networked. It can't be integrated .
integrated:adj.综合的; v.整合; (integrate的过去式和过去分词)
It cannot be used by people who aren't credentialed .
credentialed:v.受到信任(credential的过去式);
So a physicist can't get access to it without filing paperwork .
physicist:n.物理学家;物理学研究者; paperwork:n.文书工作;
A computer scientist can't get access to it without filing paperwork. 不填表格计算机学家就不能得到临床数据
Computer scientists aren't patient . They don't file paperwork.
patient:adj.有耐心的,能容忍的;n.病人;患者;
And this is an accident. These are tools that we created to protect us from harm, but what they're doing is protecting us from innovation now. 这是不应该的。这些用来保护我们的方法
innovation:n.创新,革新;新方法;
And that wasn't the goal. It wasn't the point. Right? 这并不是他们的初衷,对吧？
It's a side effect , if you will, of a power we created to take us for good.
side effect:n.副作用;附带后果;
And so if you think about it, the depressing thing is that 想想看,Facebook用于改进广告投放算法
depressing:adj.令人抑郁的; v.使沮丧; (depress的现在分词)
Facebook would never make a change to something as important as an advertising algorithm with a sample size as small as a Phase III clinical trial. 能够获得的样本大小都比 一个三期临床实验的样本大得多 这真叫人觉得沮丧
advertising:n.做广告;广告业;广告活动;v.做广告;(advertise的现在分词) Phase:n.阶段;时期;月相;(月亮的)盈亏;v.分阶段进行;逐步做;
We cannot take the information from past trials and put them together to form statistically significant samples. 我们不能汇总过去的实验数据 形成有效的统计样本
statistically:adv.统计地;统计学上; significant:adj.重大的;有效的;有意义的;值得注意的;意味深长的;n.象征;有意义的事物;
And that sucks , right? So 45 percent of men develop cancer. Thirty-eight percent of women develop cancer. 这太糟糕了,不是吗？ 45%的男性会患癌症
sucks:v.吮吸;吸;咂;啜;抽吸;抽取;(suck的第三人称单数)
One in four men dies of cancer. 每4个男人就有1人死于癌症
One in five women dies of cancer, at least in the United States.
United:adj.联合的; v.联合,团结; (unite的过去分词和过去式)
And three out of the four drugs we give you if you get cancer fail. And this is personal to me. 最终都失败了。 我个人对癌症感受颇深
personal:adj.个人的;身体的;亲自的;n.人事消息栏;人称代名词;
My sister is a cancer survivor.
My mother-in-law is a cancer survivor. Cancer sucks.
mother-in-law:n.岳母;婆母;
And when you have it, you don't have a lot of privacy in the hospital. You're naked the vast majority of the time.
privacy:n.隐私;秘密;隐居;隐居处; naked:adj.裸体的;无装饰的;无证据的;直率的;
People you don't know come in and look at you and poke you and prod you, and when I tell cancer survivors that this tool we created to protect them is actually preventing their data from being used,
poke:v.刺,捅;戳;伸出;刺探;闲荡;n.戳;刺;袋子;懒汉; prod:v.戳;杵;捅;催促;鼓动;n.戳;督促;捅;催促;鼓动;
especially when only three to four percent of people who have cancer ever even sign up for a clinical study, their reaction is not, "Thank you, God, for protecting my privacy." 尤其是授权临床研究的癌症患者比例 只有百分之三到四时
especially:adv.尤其;特别;格外;十分; reaction:n.反应,感应;反动,复古;反作用;
It's outrage that we have this information and we can't use it. 我们采集了这些信息却没有好好的利用
outrage:n.愤怒,愤慨;暴行;侮辱;vt.凌辱,强奸;对…施暴行;激起愤怒;
And it's an accident. 这是个意外
So the cost in blood and treasure of this is enormous .
enormous:adj.庞大的,巨大的;凶暴的,极恶的;
Two hundred and twenty-six billion a year is spent on cancer in the United States. 美国每年在癌症上的支出是2260亿美元
Fifteen hundred people a day die in the United States. 但每天却有1500人死于癌症
And it's getting worse.
So the good news is that some things have changed, and the most important thing that's changed is that we can now measure ourselves in ways that used to be the dominion of the health system. 其中最重要的是我们可以利用那些 之前只能被医疗体系内行使用的方法 来了解我们自己
dominion:n.主权,统治权;支配;领土;
So a lot of people talk about it as digital exhaust . 很多人认为这是数据狂热
digital:adj.数字的;手指的;n.数字;键; exhaust:v.耗尽; n.(车辆、发动机或机器排出的)废气;
I like to think of it as the dust that runs along behind my kid.
We can reach back and grab that dust, and we can learn a lot about health from it, so if our choices are part of our health, what we eat is a really important 可以得到很多关于健康的信息 如果选择是健康的一部分,那么
grab:v.攫取;霸占;将…深深吸引;n.攫取;霸占;夺取之物;
aspect of our health. So you can do something very simple and basic and take a picture of your food, and if enough people do that, we can learn a lot about how our food affects our health. 饮食是健康很重要的一部分。你可以随意的 拍一张食物的照片 如果有足够多的人这样做,我们就可以从中调查
aspect:n.方面;层面;外观;方位;
One interesting thing that came out of this — this is an app for iPhones called The Eatery — is that we think our pizza is significantly healthier than other people's pizza is. Okay? (Laughter) 由此得到的一个有趣结论是——屏幕上是一款叫做The Eatery的iPhone应用—— 我们吃的披萨比别人吃的披萨 要健康的多（笑声）
Eatery:n.简便饮食店;小饭馆; significantly:adv.意味深长地;值得注目地;
And it seems like a trivial result, but this is the sort of research that used to take the health system years and hundreds of thousands of dollars to accomplish . 但这种研究往往会花费医疗机构
trivial:adj.不重要的,琐碎的;琐细的; accomplish:v.完成;实现;达到;
It was done in five months by a startup company of a couple of people. 现在只有几个人的创业公司在5个月就得出了这个结论
I don't have any financial interest in it. 当然我对这家公司没有任何利益联系
financial:adj.金融的;财政的,财务的;
But more nontrivially, we can get our genotypes done, and although our genotypes aren't dispositive, they give us clues . 更加不同寻常的是,我们可以测定自己的基因型
genotypes:n.[遗]基因型(genotype的复数); clues:n.(调查,研究等的)线索;迹象;(故事的)关键情节;(clue的复数)
So I could show you mine. It's just A's, T's, C's and G's. 这是我的基因型,腺嘌呤、胞嘧啶、胸腺嘧啶和鸟嘌呤
This is the interpretation of it. As you can see , 这是解读,可以看到
interpretation:n.解释;翻译;演出; As you can see:正如你所看到的;你是知道的;
I carry a 32 percent risk of prostate cancer, 22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease. 22%的风险患牛皮癣,14%的风险患老年痴呆症
psoriasis:n.[皮肤]牛皮癣;银屑癣;
So that means, if you're a geneticist , you're freaking out, going, "Oh my God, you told everyone you carry the ApoE E4 allele . What's wrong with you?" 喊着,“神呐,你告诉每个人你携带ApoE E4等位基因,有毛病吧？”
geneticist:n.遗传学者; freaking:adj.该死的,他妈的;v.(使)强烈反应,畏惧;(freak的现在分词) allele:n.[遗]等位基因;
Right? When I got these results, I started talking to doctors, and they told me not to tell anyone, and my reaction is, "Is that going to help anyone cure me when I get the disease?" 他们跟我说不要告诉任何人,我的反应是
And no one could tell me yes. 没人肯定的回答我
And I live in a web world where, when you share things, beautiful stuff happens, not bad stuff. 我生活在网络时代,当大家分享信息时 美好的事情应该发生,而不是糟糕的事情
stuff:n.东西:物品:基本特征:v.填满:装满:标本:
So I started putting this in my slide decks , and I got even more obnoxious , and I went to my doctor, and I said, "I'd like to actually get my bloodwork.
decks:n.[船]甲板(deck的复数);平台;舱板;v.装饰;把…铺作甲板(deck的三单形式); obnoxious:adj.讨厌的;可憎的;不愉快的;
Please give me back my data." So this is my most recent bloodwork.
As you can see, I have high cholesterol . 正如所见,我的胆固醇过高
cholesterol:n.[生化]胆固醇;
I have particularly high bad cholesterol, and I have some bad liver numbers, but those are because we had a dinner party with a lot of good wine the night before we ran the test. (Laughter) 尤其是有害胆固醇,我的肝脏指数也不太好
particularly:adv.特别地,独特地;详细地,具体地;明确地,细致地; liver:n.肝;(动物供食用的)肝; dinner party:晚宴;
Right. But look at how non-computable this information is. 但是,这些数据是多么的不可计算
This is like the photograph of my granddad holding my mom from a data perspective , and I had to go into the system and get it out. 这张纸和那张外公抱着母亲的照片一样 从数据的角度来说,我必须先进入系统 才能取出数据
granddad:n.爷爷;外公; perspective:n.观点;远景;透视图;adj.透视的;
So the thing that I'm proposing we do here is that we reach behind us and we grab the dust, that we reach into our bodies and we grab the genotype, and we reach into the medical system and we grab our records, and we use it to build something together, which is a commons. 要去体内得到基因型
proposing:v.提议;建议;打算;计划;求婚;(propose的现在分词)
And there's been a lot of talk about commonses, right, here, there, everywhere, right. A commons is nothing more than a public good that we build out of private goods. 换取大众利益的机制
We do it voluntarily, and we do it through standardized legal tools. We do it through standardized technologies. 我们通过合法的标准化工具与技术
standardized:adj.标准的; v.使合乎标准; legal:adj.法律的;合法的;法定的;
Right. That's all a commons is. It's something that we build together because we think it's important.
And a commons of data is something that's really unique , because we make it from our own data. And although a lot of people like privacy as their methodology of control around data, and obsess around privacy, at least 这个公共数据库是独一无二的 即使很多人用很多方法去保护
unique:adj.独特的,稀罕的;[数]唯一的;n.独一无二的人或物; obsess:v.迷住,缠住;使…着迷;使…困扰;
some of us really like to share as a form of control, and what's remarkable about digital commonses is you don't need a big percentage if your sample size is big enough to generate something massive and beautiful. 只要有了足够的样本,不需要很大比例的人来参与
remarkable:adj.卓越的;非凡的;值得注意的; percentage:n.百分比;百分率;利润的分成;提成; generate:v.产生;引起; massive:adj.大量的;巨大的,厚重的;魁伟的;
So not that many programmers write free software, but we have the Apache web server. 正因为此,虽然写开源软件的程序员不多 但我们仍有Apache服务器
Not that many people who read Wikipedia edit , but it works. So as long as some people like to share as their form of control, we can build a commons, as long as we can get the information out. 虽然浏览维基百科的人中很少有人会去编辑 但维基百科很好用。所以只要有人愿意分享 只要能得到数据,我们就能建立公共数据库
Wikipedia:维基百科; edit:v.编辑;剪辑;编纂;编选;n.编辑[校订]工作;
And in biology , the numbers are even better.
biology:n.(一个地区全部的)生物;生物学;
So Vanderbilt ran a study asking people, we'd like to take your biosamples, your blood, and share them in a biobank, and only five percent of the people opted out. 希望得到他们的生物样品、血液,并且在生物样本库中分享
opted:v.选择;挑选;(opt的过去分词和过去式)
I'm from Tennessee . It's not the most science-positive state in the United States of America . (Laughter) 我来自田纳西州,在美国范围里 这并不是一个特别喜欢科学的州
Tennessee:n.田纳西州(美国州名); United States of America:un.美利坚合众国;
But only five percent of the people wanted out. 但是仅有5%的人拒绝提供样本
So people like to share, if you give them the opportunity and the choice.
And the reason that I got obsessed with this, besides the obvious family aspects , is that I spend a lot of time around mathematicians , and mathematicians are drawn to places where there's a lot of data because they can use it to tease signals out of noise. 除了明显的家庭因素,另一个驱使我关注这些的原因是 他们会被吸引到有大量数据的地方去
obsessed:v.使痴迷;使迷恋;使着迷;(obsess的过去式和过去分词) besides:adv.此外;而且;prep.除…之外; obvious:adj.明显的;显著的;平淡无奇的; aspects:n.方面;相位;面貌(aspect的复数); mathematicians:n.[数]数学家(mathematician的复数形式);
And those correlations that they can tease out, they're not necessarily causal agents , but math, in this day and age, is like a giant set of power tools 这些被发现的结果并不是病原体 数学这个能力强大的工具
correlations:n.统计,[数]相关(correlation复数形式);相互关系; necessarily:adv.必要地;必定地,必然地; causal:adj.因果关系的;有原因的;n.表示原因的连词; agents:n.代理人,经纪人;原动力;(agent的复数) giant:n.巨人;伟人;巨兽;adj.巨大的;特大的
that we're leaving on the floor, not plugged in in health, while we use hand saws. 却一直被遗忘在角落 没有被利用在健康研究中
plugged:v.堵塞;封堵;补充;供给;推广;(plug的过去分词和过去式)
If we have a lot of shared genotypes, and a lot of shared outcomes , and a lot of shared lifestyle choices, and a lot of shared environmental information, we can start 化验结果,生活中的选择
outcomes:n.结果;成果;后果;出路;(outcome的复数)
to tease out the correlations between subtle variations in people, the choices they make and the health that they create as a result of those choices, and there's open-source infrastructure to do all of this. 就可以从细微的差别中梳理出联系 知道选择是怎样影响健康的 现在已有开源的基础设施可以完成这些任务
subtle:adj.微妙的;精细的;敏感的;狡猾的;稀薄的; variations:n.变奏曲,变更;[生物]变种(variation的复数形式); as a result:结果; open-source:adj.(计算机)开放源代码; infrastructure:n.基础设施;公共建设;下部构造;
Sage Bionetworks is a nonprofit that's built a giant math system that's waiting for data, but there isn't any. Sage Bionetwork是一个拥有大型数学系统的公益机构
Sage:n.圣人;贤人;哲人;adj.明智的;贤明的;审慎的; nonprofit:adj.非赢利的;不以赢利为目的的;
So that's what I do. I've actually started what we think is the world's first fully digital, fully self-contributed, unlimited in scope , global in participation , ethically approved clinical research study where you contribute the data. 完全数字化的、自给自足的 临床研究供人们来提供数据
unlimited:adj.无限制的;无限量的;无条件的; scope:n.能力; v.仔细看; global:adj.全球的;总体的;球形的; participation:n.参与;分享;参股; ethically:adv.伦理上; approved:adj.被正式接受的,被正式认可的; v.赞成; (approve的过去分词和过去式) contribute:v.贡献,出力;投稿;捐献;
So if you reach behind yourself and you grab the dust, if you reach into your body and grab your genome, if you reach into the medical system and somehow extract your medical record, 获取你的基因型 去医疗机构得到你的医疗数据
somehow:adv.以某种方法;莫名其妙地; extract:v.提取;取出;摘录;榨取;n.汁;摘录;榨出物;选粹;
you can actually go through an online informed consent process -- because the donation to the commons must be voluntary and it must be informed -- and you can actually upload your information and have it syndicated to the 你就可以在网上完成知情同意的过程 志愿者必须知情。 之后你可以上传
process:v.处理;加工;列队行进;n.过程,进行;方法,adj.经过特殊加工(或处理)的; donation:n.捐赠;捐赠物;赠送; voluntary:adj.自愿的;志愿的;自发的;故意的;n.志愿者;自愿行动; upload:v.上传; syndicated:adj.成为企业组合的; v.把…组成辛迪加;
mathematicians who will do this sort of big data research, and the goal is to get 100,000 in the first year and a million in the first five years so that we have
a statistically significant cohort that you can use to take smaller sample sizes from traditional research and map it against, so that you can use it to tease out those subtle correlations between the variations that make us unique and the kinds of health that we need to move forward as a society. 可以找到需要整个社会努力的健康标准
cohort:n.一群人,一批人;同伙;支持者; traditional:传统的,惯例的,
And I've spent a lot of time around other commons. 我在开源世界工作了很长时间
I've been around the early web. I've been around the early creative commons world, and there's four things that all of these share, which is, they're all really simple. 我参与了早期的web的形成 我也参与了早期的知识共享组织（creative commons）
creative:adj.创造性的;
And so if you were to go to the website and enroll in this study, you're not going to see something complicated .
complicated:adj.复杂的;难懂的;v.使复杂化;(complicate的过去分词和过去式)
But it's not simplistic . These things are weak intentionally , right, because you can always add power and control to a system, but it's very difficult to remove those things if you put them in at the beginning , and so being simple doesn't mean being simplistic, and being weak doesn't mean weakness. 但这不是过分简单。 它们被故意设计的很轻量 因为向一个系统中增加功能简单
simplistic:adj.过分简单化的;过分单纯化的; intentionally:adv.故意地,有意地; at the beginning:首先;从一开始;起初;从头开始;
Those are strengths in the system.
And open doesn't mean that there's no money.
Closed systems, corporations , make a lot of money on the open web, and they're one of the reasons why the open web lives is that corporations have a vested interest in the openness of the system. 赚了很多钱,开放的网络赖以生存的原因之一
corporations:n.[贸易]公司,[经]企业(corporation的复数形式); vested interest:n.既得利益;
And so all of these things are part of the clinical study that we've created, so you can actually come in, all you have to be is 14 years old, willing to sign a contract that says I'm not going to be a jerk , basically , and you're in. 我们创造的新临床实验包括这些特性 愿意签署一份合同证明你不会做蠢事 你就被接受了
contract:v.收缩;感染;订约;n.合同;婚约; jerk:v.猛拉;n.混蛋;突然而剧烈的动作;adj.卤的; basically:adv.主要地,基本上;
You can start analyzing the data.
analyzing:adj.分析的;v.分析(analyze的现在分词);
You do have to solve a CAPTCHA as well. (Laughter) 当然你也需要填验证码（笑声）
And if you'd like to build corporate structures on top of it, that's okay too. That's all in the consent, so if you don't like those terms, you don't come in. 也是可以的。这些都在同意书中
corporate:adj.公司的;组成公司(或团体)的;法人的;社团的; structures:n.结构; v.建造(structure的第三人称单数形式);
It's very much the design principles of a commons that we're trying to bring to health data. 我们希望把公共品的设计理念
principles:n.原则;主义;本质;政策;(principle的复数)
And the other thing about these systems is that it only takes a small number of really unreasonable people working together to create them. It didn't take that many people to make Wikipedia Wikipedia, or to keep it Wikipedia. 值得一提的是开发这个系统的团队 并不像维基百科一样动用了大量的人 去编辑和维护
unreasonable:adj.不合理的;过度的;不切实际的;非理智的;
And we're not supposed to be unreasonable in health, and so I hate this word "patient." 人们总说我们不应该无私分享关于健康的数据
supposed:adj.误信的;所谓的;v.认为;假设;设想;(suppose的过去分词和过去式)
I don't like being patient when systems are broken, and health care is broken. 当我们的系统、卫生保健崩溃的时候 我不会保持耐心
health care:n.卫生保健;
I'm not talking about the politics of health care, I'm talking about the way we scientifically approach health care. 我不是指政治上的医保,而是通过科学途径达到的卫生保健
politics:n.政治;钩心斗角;政治观点;v.(贬)从事政治活动;(politic的第三人称单数) scientifically:adv.系统地;合乎科学地;学问上; approach:n.方法;路径;v.接近;建议;着手处理;
So I don't want to be patient. And the task I'm giving to you is to not be patient. So I'd like you to actually try, when you go home, to get your data. 也很急迫。我希望你们回家后
You'll be shocked and offended and, I would bet , outraged , at how hard it is to get it. 困难程度会让你震惊
offended:v.得罪;冒犯;犯罪;犯法;(offend的过去分词和过去式) bet:n.打赌;赌注;预计;估计;v.下赌注(于);用…打赌;敢说;八成儿; outraged:adj.义愤填膺的;愤慨的,气愤的;v.使愤怒(outrage的过去式,过去分词);
But it's a challenge that I hope you'll take, and maybe you'll share it. Maybe you won't. 但我希望你们能去挑战一下
If you don't have anyone in your family who's sick, maybe you wouldn't be unreasonable. But if you do, or if you've been sick, then maybe you would. 但如果你曾病过,或许你会分享
And we're going to be able to do an experiment in the next several months that lets us know exactly how many unreasonable people are out there. 接下来的几个月我们会做一个实验 让我们了解有多少无私奉献的人
So this is the Athena Breast Health Network. It's a study of 150,000 women in California, and they're going to return all the data to the participants of the study 这是Athena Breast健康网络 在一个针对15万加州女性的研究中 他们会将数据以可计算的方式归还给参与者
participants:n.参与者(participant的复数形式);
in a computable form, with one-clickability to load it into the study that I've put together. So we'll know exactly how many people are willing to be unreasonable. 只要点击一下
So what I'd end [with] is, the most beautiful thing I've learned since I quit my job almost a year ago to do this, is that it really doesn't take very many of us to achieve spectacular results.
spectacular:adj.壮观的;壮丽的;令人惊叹的;n.壮观的场面;精彩的表演;
You just have to be willing to be unreasonable, and the risk we're running is not the risk those 14 men who got yellow fever ran. Right? 承担的风险远低于那些
It's to be naked, digitally , in public. So you know more about me and my health than I know about you. It's asymmetric now. 这像是在数字世界中集体裸体,是对称的
digitally:adv.数位; asymmetric:adj.不对称的;非对称的;
And being naked and alone can be terrifying .
terrifying:adj.令人恐惧的;骇人的;极大的;v.使害怕,使恐怖;(terrify的现在分词)
But to be naked in a group, voluntarily, can be quite beautiful.
And so it doesn't take all of us. 这不需要所有人都参与
It just takes all of some of us. Thank you. 只要所有愿意参加的人都参与就可以。 谢谢
(Applause) （掌声）