TEDGlobal 2012
John Wilbanks: Let's pool our medical data
约翰·威尔班克斯: 让我们分享医疗数据
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当你接受医疗或参加医疗实验时，隐私是很重要的。严格的法律限制着研究者去了解病人。如果任何希望验证实验假设的人都可以利用人们(不记名)的医疗数据会怎么样？约翰·威尔班克斯对保护医疗隐私的做法提出了质疑，认为其会拖累研究。他还讨论了开源医疗信息是否可以带来新一波医疗创新。
John Wilbanks - Data Commons Advocate
Imagine the discoveries that could result from a giant pool of freely available health and genomic data. John Wilbanks is working to build it. Full bio
Imagine the discoveries that could result from a giant pool of freely available health and genomic data. John Wilbanks is working to build it. Full bio
Double-click the English transcript below to play the video.
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
00:19
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。
00:26
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？
00:31
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。
00:38
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。
00:41
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，
00:43
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
00:49
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
00:54
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，
00:58
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。
01:05
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》。
01:09
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
01:13
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。
01:16
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
01:22
of a narrative or a hypothesis in human testing,
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叙述或假设总结起来，
01:26
right, you get some beautiful results,
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就会得到很漂亮的结果，
01:29
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
01:36
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
01:39
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"
01:44
"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
01:55
and be voluntarily infected with yellow fever.
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去古巴住在帐篷里
01:58
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
02:01
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
02:05
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
02:08
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。
02:15
And this is what those people signed up for.
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并且这是人们自愿的
02:17
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
02:20
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
02:27
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
02:34
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
02:43
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
02:45
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
02:48
enforced medical experimentation. It's the idea
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它的基本原则是，
02:51
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
02:55
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
02:59
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
03:10
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
03:15
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。
03:18
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
03:38
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。
03:43
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
03:46
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
03:49
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
03:52
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
03:54
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
03:57
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
04:03
And the clinical methods that we've got aren't very good
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如今的临床方法
04:06
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
04:15
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
04:19
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
04:22
like most people were. This is my son.
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他吸烟。 这是我的儿子。
04:24
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
04:28
and my choices are going to affect his health.
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我的选择会影响他的健康
04:30
The technology between these two pictures
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两代人的时间
04:33
cannot be more different, but the methodology
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科技发展日新月异
04:37
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
04:41
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
04:47
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
05:00
for prostate cancer or for Alzheimer's trials
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临床实验中获取的数据
05:03
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
05:15
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
05:18
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
05:21
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
05:25
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
05:29
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
05:35
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？
05:38
It's a side effect, if you will, of a power we created
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这是一个副作用
05:41
to take us for good.
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一个好事的副作用
05:43
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
05:51
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
05:59
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
06:07
cancer. Thirty-eight percent of women develop cancer.
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38%的女性会患癌症
06:10
One in four men dies of cancer.
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每4个男人就有1人死于癌症
06:12
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
06:16
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
06:18
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。
06:27
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
06:29
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
06:33
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
06:40
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
06:43
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
06:45
who have cancer ever even sign up for a clinical study,
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只有百分之三到四时
06:48
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
06:54
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
06:56
And it's an accident.
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这是个意外
06:59
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
07:02
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
07:11
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
07:14
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
07:16
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
07:18
that used to be the dominion of the health system.
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来了解我们自己
07:21
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
07:23
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
07:29
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
07:31
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
07:34
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
07:43
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——
07:47
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
07:50
than other people's pizza is. Okay? (Laughter)
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要健康的多（笑声）
07:53
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
07:57
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
07:59
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
08:05
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
08:08
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
08:13
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
08:16
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
08:21
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
08:25
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
08:28
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？”
08:32
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
08:38
"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”
08:41
And no one could tell me yes.
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没人肯定的回答我
08:44
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
08:47
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
08:50
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
08:54
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”
08:56
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
08:59
As you can see, I have high cholesterol.
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正如所见，我的胆固醇过高
09:01
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
09:04
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
09:07
the night before we ran the test. (Laughter)
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我喝了很多红酒
09:10
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
09:14
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
09:17
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
09:21
and get it out.
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才能取出数据
09:23
So the thing that I'm proposing we do here
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这里我要提议的是
09:26
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
09:34
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）
09:38
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
09:41
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
09:44
than a public good that we build out of private goods.
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换取大众利益的机制
09:47
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
09:52
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
09:58
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
10:01
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
10:06
around data, and obsess around privacy, at least
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和关注自己的隐私和数据
10:08
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
10:11
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
10:17
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
10:22
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
10:27
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
10:31
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
10:35
And in biology, the numbers are even better.
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在生物界，数字更加客观
10:37
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
10:40
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
10:43
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
10:54
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
10:58
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
11:06
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
11:09
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
11:21
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
11:25
while we use hand saws.
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没有被利用在健康研究中
11:27
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
11:34
and a lot of shared environmental information, we can start
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以及环境信息
11:37
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
11:40
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
11:45
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
11:48
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
11:51
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
11:59
the world's first fully digital, fully self-contributed,
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完全数字化的、自给自足的
12:03
unlimited in scope, global in participation, ethically approved
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无限制、无国界且符合伦理的
12:08
clinical research study where you contribute the data.
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临床研究供人们来提供数据
12:12
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
12:14
if you reach into your body and grab your genome,
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获取你的基因型
12:17
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
12:20
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
12:23
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
12:26
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
12:31
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
12:34
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
12:37
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
12:43
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
12:46
and map it against,
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与之对应
12:47
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
12:50
between the variations that make us unique
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找出细微的联系
12:53
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
12:57
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
13:00
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）
13:05
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
13:11
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
13:28
and being weak doesn't mean weakness.
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保持轻量并不代表能力弱
13:30
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
13:35
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
13:38
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
13:42
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
13:47
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
13:51
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
13:54
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
13:56
basically, and you're in.
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你就被接受了
13:59
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
14:08
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
14:11
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
14:14
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
14:17
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
14:26
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
14:29
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
14:37
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
14:40
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
14:50
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
14:53
when you go home, to get your data.
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尝试去获得自己的数据
14:56
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
15:01
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
15:04
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
15:08
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
15:11
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
15:13
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
15:16
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
15:19
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
15:25
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
15:28
in a computable form, with one-clickability to load it into
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只要点击一下
15:31
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
15:36
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
15:45
very many of us to achieve spectacular results.
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不需要召集很多人去合作
15:49
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
15:54
who got yellow fever ran. Right?
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自愿感染黄热病的人，对么？
15:56
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。
16:02
And being naked and alone can be terrifying.
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一个人裸体是很可怕的事情
16:06
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。
16:10
And so it doesn't take all of us.
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这不需要所有人都参与
16:12
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
16:15
(Applause)
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（掌声）
ABOUT THE SPEAKER
John Wilbanks - Data Commons AdvocateImagine the discoveries that could result from a giant pool of freely available health and genomic data. John Wilbanks is working to build it.
Why you should listen
Performing a medical or genomic experiment on a human requires informed consent and careful boundaries around privacy. But what if the data that results, once scrubbed of identifying marks, was released into the wild? At WeConsent.us, John Wilbanks thinks through the ethical and procedural steps to create an open, massive, mine-able database of data about health and genomics from many sources. One step: the Portable Legal Consent for Common Genomics Research (PLC-CGR), an experimental bioethics protocol that would allow any test subject to say, "Yes, once this experiment is over, you can use my data, anonymously, to answer any other questions you can think of." Compiling piles of test results in one place, Wilbanks suggests, would turn genetic info into big data--giving researchers the potential to spot patterns that simply aren't viewable up close.
A campaigner for the wide adoption of data sharing in science, Wilbanks is also a Senior Fellow with the Kauffman Foundation, a Research Fellow at Lybba and supported by Sage Bionetworks.
In February 2013, the US government responded to a We the People petition spearheaded by Wilbanks and signed by 65,000 people, and announced a plan to open up taxpayer-funded research data and make it available for free.
John Wilbanks | Speaker | TED.com