John Wilbanks: Let's pool our medical data

31,369 views ・ 2012-10-16

TED


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00:00
Translator: Joseph Geni Reviewer: Morton Bast
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翻译人员: Huiqing CHE 校对人员: Wei Wu
00:15
So I have bad news, I have good news,
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我有些好消息也有些坏消息
00:18
and I have a task.
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也有个任务。
00:20
So the bad news is that we all get sick.
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坏消息是我们都会得病
00:23
I get sick. You get sick.
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我会生病,你会生病。
00:25
And every one of us gets sick, and the question really is,
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我们每一个人都会生病。问题是:
00:28
how sick do we get? Is it something that kills us?
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我们病得有多重?会不会致命?
00:30
Is it something that we survive?
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我们能不能挺过来?
00:32
Is it something that we can treat?
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可不可以被治愈?
00:34
And we've gotten sick as long as we've been people.
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只要我们还是人类,我们就会得病。
00:37
And so we've always looked for reasons to explain why we get sick.
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所以,我们常会寻找得病的原因。
00:40
And for a long time, it was the gods, right?
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很长时间以来,我们认为是和上帝有关,
00:42
The gods are angry with me, or the gods are testing me,
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上帝生我的气了,或者上帝在考验我,
00:46
right? Or God, singular, more recently,
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或是上帝
00:48
is punishing me or judging me.
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在惩罚我或审判我。
00:51
And as long as we've looked for explanations,
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我们不断的寻求生病的原因
00:53
we've wound up with something that gets closer and closer to science,
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我们得到了一些越来越接近科学的假设,
00:57
which is hypotheses as to why we get sick,
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一些我们为什么会得病的假设。
01:00
and as long as we've had hypotheses about why we get sick, we've tried to treat it as well.
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有了这些假设,我们就会尝试去治愈疾病。
01:04
So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine,"
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这是伊本·西那 ,几千年前他写了一本《医学规则》。
01:08
and the rules he laid out for testing medicines
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他记述的药物测试规则
01:11
are actually really similar to the rules we have today,
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和我们今天使用的规则非常相似
01:12
that the disease and the medicine must be the same strength,
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药物的作用强度必须与疾病的严重程度相当。
01:15
the medicine needs to be pure, and in the end we need
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药物需是纯净的, 最终,我们会进行人体实验
01:18
to test it in people. And so if you put together these themes
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如果你把这些关于人体试验的
01:21
of a narrative or a hypothesis in human testing,
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叙述或假设总结起来,
01:25
right, you get some beautiful results,
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就会得到很漂亮的结果,
01:28
even when we didn't have very good technologies.
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即使是在科技不发达的年代。
01:30
This is a guy named Carlos Finlay. He had a hypothesis
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这个人叫卡洛斯·芬莱, 他提出了一个
01:33
that was way outside the box for his time, in the late 1800s.
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在19世纪末期非常有超前的假设
01:35
He thought yellow fever was not transmitted by dirty clothing.
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他认为黄热病不是由脏衣物
01:38
He thought it was transmitted by mosquitos.
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而是由蚊子传播的。
01:41
And they laughed at him. For 20 years, they called this guy
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人们都取笑他,之后的20年里人们称他为"蚊子先生"
01:43
"the mosquito man." But he ran an experiment in people,
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但他在一些人身上进行了实验
01:47
right? He had this hypothesis, and he tested it in people.
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他有了这个假设然后在人们身上进行测试
01:50
So he got volunteers to go move to Cuba and live in tents
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他招了自愿感染黄热病的志愿者
01:54
and be voluntarily infected with yellow fever.
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去古巴住在帐篷里
01:57
So some of the people in some of the tents had dirty clothes
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其中一些放有脏衣服
02:00
and some of the people were in tents that were full
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另一些
02:02
of mosquitos that had been exposed to yellow fever.
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则满是接触过黄热病的蚊子
02:04
And it definitively proved that it wasn't this magic dust
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实验无疑证明了并不是那些
02:07
called fomites in your clothes that caused yellow fever.
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叫做感染体的神奇污垢导致黄热病
02:11
But it wasn't until we tested it in people that we actually knew.
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如果没有人体实验,我们将无法证明这个结论。
02:14
And this is what those people signed up for.
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并且这是人们自愿的
02:16
This is what it looked like to have yellow fever in Cuba
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这就是当时在古巴得黄热病的样子
02:19
at that time. You suffered in a tent, in the heat, alone,
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你在帐篷里独自一人忍受高温
02:24
and you probably died.
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还有可能会死掉
02:26
But people volunteered for this.
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但人们依然自愿参加
02:30
And it's not just a cool example of a scientific design
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这并不仅是一个很酷的科学实验设计
02:33
of experiment in theory. They also did this beautiful thing.
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他们还做了这样一件漂亮的事情
02:36
They signed this document, and it's called an informed consent document.
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这个文件叫做知情同意书,志愿者需要签署这个协议
02:40
And informed consent is an idea that we should be
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知情同意书是一个值得社会骄傲的想法
02:42
very proud of as a society, right? It's something that
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它把我们和纽伦堡的那些
02:44
separates us from the Nazis at Nuremberg,
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进行强制医学实验的纳粹党区分开来
02:47
enforced medical experimentation. It's the idea
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它的基本原则是,
02:50
that agreement to join a study without understanding isn't agreement.
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志愿者的同意必须建立在知晓实验内容的基础上
02:54
It's something that protects us from harm, from hucksters,
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它可以防止我们被唯利是图的人
02:58
from people that would try to hoodwink us into a clinical
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哄骗去参加那些
03:01
study that we don't understand, or that we don't agree to.
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我们不了解也不想参加的医学实验
03:05
And so you put together the thread of narrative hypothesis,
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将这些口头叙述、科学假设
03:09
experimentation in humans, and informed consent,
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人体试验以及知情同意书组合在一起
03:12
and you get what we call clinical study, and it's how we do
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就是我们今天的临床试验
03:14
the vast majority of medical work. It doesn't really matter
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大量的医学工作都通过临床实验完成。
03:17
if you're in the north, the south, the east, the west.
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无论你来自何方
03:20
Clinical studies form the basis of how we investigate,
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临床研究形成了医学研究的基础
03:24
so if we're going to look at a new drug, right,
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比如说我们要开发一种新药物
03:26
we test it in people, we draw blood, we do experiments,
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我们要进行人体实验、抽血、化验
03:29
and we gain consent for that study, to make sure
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当然在这之前要通过知情同意书
03:31
that we're not screwing people over as part of it.
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来确认我们没有强迫人们参与
03:34
But the world is changing around the clinical study,
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临床实验方法已经建立超过10年
03:37
which has been fairly well established for tens of years
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如果没有超过50或100年的话
03:41
if not 50 to 100 years.
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而它周围的环境已经不同了。
03:42
So now we're able to gather data about our genomes,
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现如今我们可以得到基因组的信息
03:45
but, as we saw earlier, our genomes aren't dispositive.
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但是基因组并不能决定一切
03:48
We're able to gather information about our environment.
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我们可以收集周围环境的信息
03:51
And more importantly, we're able to gather information
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但更重要的是,我们可以记录我们的日常选择
03:53
about our choices, because it turns out that what we think of
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因为我们发现身体健康是由
03:56
as our health is more like the interaction of our bodies,
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我们的身体、基因、环境
03:59
our genomes, our choices and our environment.
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和日常选择共同决定的
04:02
And the clinical methods that we've got aren't very good
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如今的临床方法
04:05
at studying that because they are based on the idea
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是基于人与人之间的交互
04:08
of person-to-person interaction. You interact
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所以并不能满足现代的要求。
04:10
with your doctor and you get enrolled in the study.
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在实验中你只是和你的医生进行交流
04:12
So this is my grandfather. I actually never met him,
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这是我的外公,虽然我从来没见过他
04:14
but he's holding my mom, and his genes are in me, right?
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但他抱着的是我妈妈,而他的基因遗传给我
04:18
His choices ran through to me. He was a smoker,
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他的选择也会影响我。像他人一样
04:21
like most people were. This is my son.
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他吸烟。 这是我的儿子。
04:23
So my grandfather's genes go all the way through to him,
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我外公的基因也会遗传给他
04:27
and my choices are going to affect his health.
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我的选择会影响他的健康
04:29
The technology between these two pictures
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两代人的时间
04:32
cannot be more different, but the methodology
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科技发展日新月异
04:36
for clinical studies has not radically changed over that time period.
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但是临床实验方法论并没有很大的改善
04:40
We just have better statistics.
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我们只是有了更好的统计而已
04:43
The way we gain informed consent was formed in large part
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知情同意的授权方式,主要是在第一张照片的年代
04:46
after World War II, around the time that picture was taken.
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也就是二战后形成的
04:49
That was 70 years ago, and the way we gain informed consent,
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知情同意书的本意是保护我们免遭伤害
04:53
this tool that was created to protect us from harm,
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但在这70后的今天,这种方法却形成了信息孤岛
04:56
now creates silos. So the data that we collect
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在前列腺癌或老年痴呆症
04:59
for prostate cancer or for Alzheimer's trials
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临床实验中获取的数据
05:02
goes into silos where it can only be used
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只能存入用以进行前列腺癌或
05:05
for prostate cancer or for Alzheimer's research.
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老年痴呆症研究的数据孤岛
05:08
Right? It can't be networked. It can't be integrated.
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它们不会被链接或整合起来
05:11
It cannot be used by people who aren't credentialed.
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他们需要获得授权才能被使用
05:14
So a physicist can't get access to it without filing paperwork.
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所以一个物理学家必须填写表格才能得到临床数据
05:17
A computer scientist can't get access to it without filing paperwork.
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不填表格计算机学家就不能得到临床数据
05:20
Computer scientists aren't patient. They don't file paperwork.
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计算机学家可没那么耐心,他们不喜欢填表格
05:24
And this is an accident. These are tools that we created
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这是不应该的。这些用来保护我们的方法
05:28
to protect us from harm, but what they're doing
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现在却在阻碍
05:32
is protecting us from innovation now.
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我们创新的脚步
05:34
And that wasn't the goal. It wasn't the point. Right?
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这并不是他们的初衷,对吧?
05:37
It's a side effect, if you will, of a power we created
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这是一个副作用
05:40
to take us for good.
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一个好事的副作用
05:42
And so if you think about it, the depressing thing is that
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想想看,Facebook用于改进广告投放算法
05:46
Facebook would never make a change to something
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能够获得的样本大小都比
05:48
as important as an advertising algorithm
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一个三期临床实验的样本大得多
05:50
with a sample size as small as a Phase III clinical trial.
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这真叫人觉得沮丧
05:55
We cannot take the information from past trials
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我们不能汇总过去的实验数据
05:58
and put them together to form statistically significant samples.
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形成有效的统计样本
06:03
And that sucks, right? So 45 percent of men develop
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这太糟糕了,不是吗? 45%的男性会患癌症
06:06
cancer. Thirty-eight percent of women develop cancer.
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38%的女性会患癌症
06:09
One in four men dies of cancer.
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每4个男人就有1人死于癌症
06:11
One in five women dies of cancer, at least in the United States.
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每5个女人就有1人死于癌症,至少在美国是这样
06:15
And three out of the four drugs we give you
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四分之三的癌症治疗药物
06:17
if you get cancer fail. And this is personal to me.
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最终都失败了。 我个人对癌症感受颇深
06:21
My sister is a cancer survivor.
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我的姊妹从癌患中痊愈
06:23
My mother-in-law is a cancer survivor. Cancer sucks.
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我的岳母也是。得癌症很郁闷的。
06:26
And when you have it, you don't have a lot of privacy
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如果得了癌症,你在医院里是没多少隐私的
06:28
in the hospital. You're naked the vast majority of the time.
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大部分时间都是裸体
06:32
People you don't know come in and look at you and poke you and prod you,
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你不认识的人会进到病房指指点点
06:36
and when I tell cancer survivors that this tool we created
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当我告诉得过癌症的人旨在保护他们的
06:39
to protect them is actually preventing their data from being used,
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知情同意书阻止了临床研究使用他们的诊断数据
06:42
especially when only three to four percent of people
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尤其是授权临床研究的癌症患者比例
06:44
who have cancer ever even sign up for a clinical study,
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只有百分之三到四时
06:47
their reaction is not, "Thank you, God, for protecting my privacy."
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他们的反应不是“感谢上帝我的隐私得到了保护”
06:51
It's outrage
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而是非常愤怒
06:53
that we have this information and we can't use it.
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我们采集了这些信息却没有好好的利用
06:55
And it's an accident.
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这是个意外
06:58
So the cost in blood and treasure of this is enormous.
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这个意外的代价是巨大的
07:01
Two hundred and twenty-six billion a year is spent on cancer in the United States.
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美国每年在癌症上的支出是2260亿美元
07:05
Fifteen hundred people a day die in the United States.
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但每天却有1500人死于癌症
07:08
And it's getting worse.
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真是越来越糟
07:10
So the good news is that some things have changed,
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好消息是,有些事正在改变
07:13
and the most important thing that's changed
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其中最重要的是我们可以利用那些
07:15
is that we can now measure ourselves in ways
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之前只能被医疗体系内行使用的方法
07:17
that used to be the dominion of the health system.
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来了解我们自己
07:20
So a lot of people talk about it as digital exhaust.
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很多人认为这是数据狂热
07:22
I like to think of it as the dust that runs along behind my kid.
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我常用一个例子诠释这个想法:
07:26
We can reach back and grab that dust,
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提取我儿子身后的粉尘
07:28
and we can learn a lot about health from it, so if our choices
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可以得到很多关于健康的信息
07:30
are part of our health, what we eat is a really important
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如果选择是健康的一部分,那么
07:33
aspect of our health. So you can do something very simple
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饮食是健康很重要的一部分。你可以随意的
07:36
and basic and take a picture of your food,
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拍一张食物的照片
07:38
and if enough people do that, we can learn a lot about
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如果有足够多的人这样做,我们就可以从中调查
07:41
how our food affects our health.
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食物对健康的影响
07:42
One interesting thing that came out of this — this is an app for iPhones called The Eatery —
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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——
07:46
is that we think our pizza is significantly healthier
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我们吃的披萨比别人吃的披萨
07:49
than other people's pizza is. Okay? (Laughter)
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要健康的多(笑声)
07:52
And it seems like a trivial result, but this is the sort of research
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这看起来是一个简单的结论
07:56
that used to take the health system years
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但这种研究往往会花费医疗机构
07:58
and hundreds of thousands of dollars to accomplish.
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数年以及成百上千万美元去完成
08:01
It was done in five months by a startup company of a couple of people.
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现在只有几个人的创业公司在5个月就得出了这个结论
08:04
I don't have any financial interest in it.
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当然我对这家公司没有任何利益联系
08:07
But more nontrivially, we can get our genotypes done,
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更加不同寻常的是,我们可以测定自己的基因型
08:10
and although our genotypes aren't dispositive, they give us clues.
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虽然它们不是决定性的,但依然可以从中得到信息
08:12
So I could show you mine. It's just A's, T's, C's and G's.
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这是我的基因型,腺嘌呤、胞嘧啶、胸腺嘧啶和鸟嘌呤
08:15
This is the interpretation of it. As you can see,
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这是解读,可以看到
08:18
I carry a 32 percent risk of prostate cancer,
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我有32%的风险患前列腺癌
08:20
22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease.
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22%的风险患牛皮癣,14%的风险患老年痴呆症
08:24
So that means, if you're a geneticist, you're freaking out,
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这意味着,如果你是基因学家,你会崩溃的
08:27
going, "Oh my God, you told everyone you carry the ApoE E4 allele. What's wrong with you?"
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喊着,“神呐,你告诉每个人你携带ApoE E4等位基因,有毛病吧?”
08:31
Right? When I got these results, I started talking to doctors,
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当我得到这些结果,我开始跟一些医生交谈
08:35
and they told me not to tell anyone, and my reaction is,
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他们跟我说不要告诉任何人,我的反应是
08:37
"Is that going to help anyone cure me when I get the disease?"
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“如果我得病,这些信息可以帮助人治愈我吗”
08:40
And no one could tell me yes.
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没人肯定的回答我
08:43
And I live in a web world where, when you share things,
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我生活在网络时代,当大家分享信息时
08:46
beautiful stuff happens, not bad stuff.
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美好的事情应该发生,而不是糟糕的事情
08:49
So I started putting this in my slide decks,
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所以我开始把这些结果放进幻灯片
08:51
and I got even more obnoxious, and I went to my doctor,
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我变得更“贪得无厌”,我去找我的医生
08:53
and I said, "I'd like to actually get my bloodwork.
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说:“我想要我的验血结果”
08:55
Please give me back my data." So this is my most recent bloodwork.
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这就是我最近的验血数据
08:58
As you can see, I have high cholesterol.
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正如所见,我的胆固醇过高
09:00
I have particularly high bad cholesterol, and I have some
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尤其是有害胆固醇,我的肝脏指数也不太好
09:03
bad liver numbers, but those are because we had a dinner party with a lot of good wine
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不过这是因为在验血的前一天的晚宴
09:06
the night before we ran the test. (Laughter)
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我喝了很多红酒
09:09
Right. But look at how non-computable this information is.
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但是,这些数据是多么的不可计算
09:13
This is like the photograph of my granddad holding my mom
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这张纸和那张外公抱着母亲的照片一样
09:16
from a data perspective, and I had to go into the system
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从数据的角度来说,我必须先进入系统
09:20
and get it out.
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才能取出数据
09:22
So the thing that I'm proposing we do here
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这里我要提议的是
09:25
is that we reach behind us and we grab the dust,
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我们要去收集身后的灰尘
09:28
that we reach into our bodies and we grab the genotype,
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要去体内得到基因型
09:31
and we reach into the medical system and we grab our records,
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要去医疗机构得到我们的记录
09:33
and we use it to build something together, which is a commons.
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然后大家一起建成一个公共数据库(commons)
09:37
And there's been a lot of talk about commonses, right,
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各种各样的演讲都提到了公共数据
09:40
here, there, everywhere, right. A commons is nothing more
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一个公共数据库是用个人利益
09:43
than a public good that we build out of private goods.
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换取大众利益的机制
09:46
We do it voluntarily, and we do it through standardized
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我们通过合法的标准化工具与技术
09:49
legal tools. We do it through standardized technologies.
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资源的参与进去
09:51
Right. That's all a commons is. It's something that we build
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这就是公共数据库。 因为我们认为它很重要
09:55
together because we think it's important.
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所以我们会集体参与
09:57
And a commons of data is something that's really unique,
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这个公共数据库是独一无二的
10:00
because we make it from our own data. And although
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因为他是由每个人特殊的数据组成的
10:03
a lot of people like privacy as their methodology of control
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即使很多人用很多方法去保护
10:05
around data, and obsess around privacy, at least
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和关注自己的隐私和数据
10:07
some of us really like to share as a form of control,
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但至少有一些人喜欢去分享,掌控自己的数据
10:10
and what's remarkable about digital commonses
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公共数据库的一个显著特点是
10:13
is you don't need a big percentage if your sample size is big enough
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只要有了足够的样本,不需要很大比例的人来参与
10:16
to generate something massive and beautiful.
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也可以得到漂亮且大规模的结果
10:19
So not that many programmers write free software,
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正因为此,虽然写开源软件的程序员不多
10:21
but we have the Apache web server.
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但我们仍有Apache服务器
10:24
Not that many people who read Wikipedia edit,
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虽然浏览维基百科的人中很少有人会去编辑
10:26
but it works. So as long as some people like to share
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但维基百科很好用。所以只要有人愿意分享
10:30
as their form of control, we can build a commons, as long as we can get the information out.
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只要能得到数据,我们就能建立公共数据库
10:34
And in biology, the numbers are even better.
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在生物界,数字更加客观
10:36
So Vanderbilt ran a study asking people, we'd like to take
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范德比特大学在一项研究中对人们进行调查
10:39
your biosamples, your blood, and share them in a biobank,
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希望得到他们的生物样品、血液,并且在生物样本库中分享
10:42
and only five percent of the people opted out.
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只有5%的人拒绝
10:45
I'm from Tennessee. It's not the most science-positive state
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我来自田纳西州,在美国范围里
10:48
in the United States of America. (Laughter)
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这并不是一个特别喜欢科学的州
10:51
But only five percent of the people wanted out.
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但是仅有5%的人拒绝提供样本
10:53
So people like to share, if you give them the opportunity and the choice.
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所以只要有机会,人们是喜欢分享的
10:57
And the reason that I got obsessed with this, besides the obvious family aspects,
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除了明显的家庭因素,另一个驱使我关注这些的原因是
11:02
is that I spend a lot of time around mathematicians,
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我和数学家们共事了很长时间
11:05
and mathematicians are drawn to places where there's a lot of data
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他们会被吸引到有大量数据的地方去
11:08
because they can use it to tease signals out of noise.
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因为数学家可以利用数据从一团乱麻中梳理出头绪来
11:11
And those correlations that they can tease out, they're not
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这些被发现的结果并不是病原体
11:14
necessarily causal agents, but math, in this day and age,
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但是当我们用原始的方法去研究健康时
11:18
is like a giant set of power tools
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数学这个能力强大的工具
11:20
that we're leaving on the floor, not plugged in in health,
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却一直被遗忘在角落
11:24
while we use hand saws.
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没有被利用在健康研究中
11:26
If we have a lot of shared genotypes, and a lot of shared
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如果我们可以获得很多人们公开的基因型
11:31
outcomes, and a lot of shared lifestyle choices,
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化验结果,生活中的选择
11:33
and a lot of shared environmental information, we can start
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以及环境信息
11:36
to tease out the correlations between subtle variations
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就可以从细微的差别中梳理出联系
11:39
in people, the choices they make and the health that they create as a result of those choices,
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知道选择是怎样影响健康的
11:44
and there's open-source infrastructure to do all of this.
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现在已有开源的基础设施可以完成这些任务
11:47
Sage Bionetworks is a nonprofit that's built a giant math system
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Sage Bionetwork是一个拥有大型数学系统的公益机构
11:50
that's waiting for data, but there isn't any.
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他们需要数据,但是却得不到很多
11:55
So that's what I do. I've actually started what we think is
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这就是我要做的。我想发起世界上第一个
11:58
the world's first fully digital, fully self-contributed,
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完全数字化的、自给自足的
12:02
unlimited in scope, global in participation, ethically approved
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无限制、无国界且符合伦理的
12:07
clinical research study where you contribute the data.
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临床研究供人们来提供数据
12:11
So if you reach behind yourself and you grab the dust,
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所以你可以去获取身后的尘土
12:13
if you reach into your body and grab your genome,
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获取你的基因型
12:16
if you reach into the medical system and somehow extract your medical record,
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去医疗机构得到你的医疗数据
12:19
you can actually go through an online informed consent process --
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你就可以在网上完成知情同意的过程
12:22
because the donation to the commons must be voluntary
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因为向公共数据库的贡献必须是自愿的
12:25
and it must be informed -- and you can actually upload
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志愿者必须知情。 之后你可以上传
12:28
your information and have it syndicated to the
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你的信息,聚合后的信息会送给那些
12:30
mathematicians who will do this sort of big data research,
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专门解决大数据的数学家们去研究
12:33
and the goal is to get 100,000 in the first year
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我们第一年的目标是得到10万份数据
12:36
and a million in the first five years so that we have
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前五年得到100万
12:39
a statistically significant cohort that you can use to take
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这样我们就有了具有统计意义的同期组群
12:42
smaller sample sizes from traditional research
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你可以从传统研究中得到更小的采样数量
12:45
and map it against,
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与之对应
12:46
so that you can use it to tease out those subtle correlations
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你可以从那些使我们互异的差别中
12:49
between the variations that make us unique
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找出细微的联系
12:52
and the kinds of health that we need to move forward as a society.
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可以找到需要整个社会努力的健康标准
12:56
And I've spent a lot of time around other commons.
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我在开源世界工作了很长时间
12:59
I've been around the early web. I've been around
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我参与了早期的web的形成
13:02
the early creative commons world, and there's four things
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我也参与了早期的知识共享组织(creative commons)
13:04
that all of these share, which is, they're all really simple.
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他们有四个共同点:一是简单
13:08
And so if you were to go to the website and enroll in this study,
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所以如果你去我们的网站参与研究
13:10
you're not going to see something complicated.
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你不会看到很复杂的事情
13:13
But it's not simplistic. These things are weak intentionally,
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但这不是过分简单。 它们被故意设计的很轻量
13:18
right, because you can always add power and control to a system,
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因为向一个系统中增加功能简单
13:21
but it's very difficult to remove those things if you put them in at the beginning,
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但想移除一个一开始就存在的部分是很难的
13:25
and so being simple doesn't mean being simplistic,
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所以简单并不代表过分简单
13:27
and being weak doesn't mean weakness.
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保持轻量并不代表能力弱
13:29
Those are strengths in the system.
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这就是我们系统的力量
13:32
And open doesn't mean that there's no money.
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开放并不代表不能盈利
13:34
Closed systems, corporations, make a lot of money
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封闭的系统和公司通过开放的网络
13:37
on the open web, and they're one of the reasons why the open web lives
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赚了很多钱,开放的网络赖以生存的原因之一
13:41
is that corporations have a vested interest in the openness
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就是公司和企业对系统的开放性
13:44
of the system.
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有很大的兴趣
13:46
And so all of these things are part of the clinical study that we've created,
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我们创造的新临床实验包括这些特性
13:50
so you can actually come in, all you have to be is 14 years old,
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所以你只要年满14周岁,来到我们的网站
13:53
willing to sign a contract that says I'm not going to be a jerk,
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愿意签署一份合同证明你不会做蠢事
13:55
basically, and you're in.
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你就被接受了
13:58
You can start analyzing the data.
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你可以开始分析数据
14:00
You do have to solve a CAPTCHA as well. (Laughter)
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当然你也需要填验证码(笑声)
14:04
And if you'd like to build corporate structures on top of it,
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如果你希望基于此建立一个公司
14:07
that's okay too. That's all in the consent,
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也是可以的。这些都在同意书中
14:10
so if you don't like those terms, you don't come in.
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如果你不喜欢这些条款,也可以不参加
14:13
It's very much the design principles of a commons
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我们希望把公共品的设计理念
14:16
that we're trying to bring to health data.
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引入到医疗数据领域
14:19
And the other thing about these systems is that it only takes
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值得一提的是开发这个系统的团队
14:22
a small number of really unreasonable people working together
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只有很少几个无私奉献的人
14:25
to create them. It didn't take that many people
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并不像维基百科一样动用了大量的人
14:28
to make Wikipedia Wikipedia, or to keep it Wikipedia.
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去编辑和维护
14:32
And we're not supposed to be unreasonable in health,
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人们总说我们不应该无私分享关于健康的数据
14:34
and so I hate this word "patient."
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所以我讨厌“耐心”这个词
14:36
I don't like being patient when systems are broken,
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当我们的系统、卫生保健崩溃的时候
14:39
and health care is broken.
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我不会保持耐心
14:42
I'm not talking about the politics of health care, I'm talking about the way we scientifically approach health care.
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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
14:46
So I don't want to be patient. And the task I'm giving to you
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我等不及了,交给你们的任务
14:49
is to not be patient. So I'd like you to actually try,
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也很急迫。我希望你们回家后
14:52
when you go home, to get your data.
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尝试去获得自己的数据
14:55
You'll be shocked and offended and, I would bet, outraged,
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困难程度会让你震惊
14:58
at how hard it is to get it.
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甚至愤怒
15:00
But it's a challenge that I hope you'll take,
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但我希望你们能去挑战一下
15:03
and maybe you'll share it. Maybe you won't.
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或许你们最终会分享,或许不会
15:06
If you don't have anyone in your family who's sick,
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如果你家里没有任何人生病
15:07
maybe you wouldn't be unreasonable. But if you do,
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或许你不会无私的分享数据
15:10
or if you've been sick, then maybe you would.
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但如果你曾病过,或许你会分享
15:12
And we're going to be able to do an experiment in the next several months
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接下来的几个月我们会做一个实验
15:15
that lets us know exactly how many unreasonable people are out there.
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让我们了解有多少无私奉献的人
15:18
So this is the Athena Breast Health Network. It's a study
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这是Athena Breast健康网络
15:21
of 150,000 women in California, and they're going to
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在一个针对15万加州女性的研究中
15:24
return all the data to the participants of the study
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他们会将数据以可计算的方式归还给参与者
15:27
in a computable form, with one-clickability to load it into
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只要点击一下
15:30
the study that I've put together. So we'll know exactly
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就可以把数据载入我们的系统中。这样就可以知道
15:33
how many people are willing to be unreasonable.
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有多少人愿意无私的分享他们的数据
15:35
So what I'd end [with] is,
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我希望以这张图片结尾
15:38
the most beautiful thing I've learned since I quit my job
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自从一年前辞职做这件事情,我学到的
15:41
almost a year ago to do this, is that it really doesn't take
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最美好的事情是:完成一件壮举真的
15:44
very many of us to achieve spectacular results.
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不需要召集很多人去合作
15:48
You just have to be willing to be unreasonable,
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需要的只是愿意分享自己的数据
15:51
and the risk we're running is not the risk those 14 men
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承担的风险远低于那些
15:53
who got yellow fever ran. Right?
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自愿感染黄热病的人,对么?
15:55
It's to be naked, digitally, in public. So you know more
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这像是在数字世界中集体裸体,是对称的
15:58
about me and my health than I know about you. It's asymmetric now.
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你了解我的身体和健康,我也了解你的。
16:01
And being naked and alone can be terrifying.
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一个人裸体是很可怕的事情
16:05
But to be naked in a group, voluntarily, can be quite beautiful.
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但是一群人自愿的这么做,可以是非常美好的。
16:09
And so it doesn't take all of us.
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这不需要所有人都参与
16:11
It just takes all of some of us. Thank you.
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只要所有愿意参加的人都参与就可以。 谢谢
16:14
(Applause)
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这个网站将向你介绍对学习英语有用的YouTube视频。你将看到来自世界各地的一流教师教授的英语课程。双击每个视频页面上显示的英文字幕,即可从那里播放视频。字幕会随着视频的播放而同步滚动。如果你有任何意见或要求,请使用此联系表与我们联系。

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