[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:00.10,0:00:03.16,Default,,0000,0000,0000,,So I have bad news, I have good news,
Dialogue: 0,0:00:03.16,0:00:05.02,Default,,0000,0000,0000,,and I have a task.
Dialogue: 0,0:00:05.02,0:00:07.97,Default,,0000,0000,0000,,So the bad news is that we all get sick.
Dialogue: 0,0:00:07.97,0:00:10.24,Default,,0000,0000,0000,,I get sick. You get sick.
Dialogue: 0,0:00:10.24,0:00:12.78,Default,,0000,0000,0000,,And every one of us gets sick, and the question really is,
Dialogue: 0,0:00:12.78,0:00:15.66,Default,,0000,0000,0000,,how sick do we get? Is it something that kills us?
Dialogue: 0,0:00:15.66,0:00:17.00,Default,,0000,0000,0000,,Is it something that we survive?
Dialogue: 0,0:00:17.00,0:00:18.93,Default,,0000,0000,0000,,Is it something that we can treat?
Dialogue: 0,0:00:18.93,0:00:22.19,Default,,0000,0000,0000,,And we've gotten sick as long as we've been people.
Dialogue: 0,0:00:22.19,0:00:25.67,Default,,0000,0000,0000,,And so we've always looked for reasons to explain why we get sick.
Dialogue: 0,0:00:25.67,0:00:27.63,Default,,0000,0000,0000,,And for a long time, it was the gods, right?
Dialogue: 0,0:00:27.63,0:00:30.78,Default,,0000,0000,0000,,The gods are angry with me, or the gods are testing me,
Dialogue: 0,0:00:30.78,0:00:33.20,Default,,0000,0000,0000,,right? Or God, singular, more recently,
Dialogue: 0,0:00:33.20,0:00:35.86,Default,,0000,0000,0000,,is punishing me or judging me.
Dialogue: 0,0:00:35.86,0:00:38.54,Default,,0000,0000,0000,,And as long as we've looked for explanations,
Dialogue: 0,0:00:38.54,0:00:42.26,Default,,0000,0000,0000,,we've wound up with something that gets closer and closer to science,
Dialogue: 0,0:00:42.26,0:00:44.74,Default,,0000,0000,0000,,which is hypotheses as to why we get sick,
Dialogue: 0,0:00:44.74,0:00:49.48,Default,,0000,0000,0000,,and as long as we've had hypotheses about why we get sick, we've tried to treat it as well.
Dialogue: 0,0:00:49.48,0:00:53.52,Default,,0000,0000,0000,,So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine,"
Dialogue: 0,0:00:53.52,0:00:55.92,Default,,0000,0000,0000,,and the rules he laid out for testing medicines
Dialogue: 0,0:00:55.92,0:00:57.71,Default,,0000,0000,0000,,are actually really similar to the rules we have today,
Dialogue: 0,0:00:57.71,0:01:00.66,Default,,0000,0000,0000,,that the disease and the medicine must be the same strength,
Dialogue: 0,0:01:00.66,0:01:03.05,Default,,0000,0000,0000,,the medicine needs to be pure, and in the end we need
Dialogue: 0,0:01:03.05,0:01:06.20,Default,,0000,0000,0000,,to test it in people. And so if you put together these themes
Dialogue: 0,0:01:06.20,0:01:10.66,Default,,0000,0000,0000,,of a narrative or a hypothesis in human testing,
Dialogue: 0,0:01:10.66,0:01:13.32,Default,,0000,0000,0000,,right, you get some beautiful results,
Dialogue: 0,0:01:13.32,0:01:14.76,Default,,0000,0000,0000,,even when we didn't have very good technologies.
Dialogue: 0,0:01:14.76,0:01:17.82,Default,,0000,0000,0000,,This is a guy named Carlos Finlay. He had a hypothesis
Dialogue: 0,0:01:17.82,0:01:20.72,Default,,0000,0000,0000,,that was way outside the box for his time, in the late 1800s.
Dialogue: 0,0:01:20.72,0:01:23.57,Default,,0000,0000,0000,,He thought yellow fever was not transmitted by dirty clothing.
Dialogue: 0,0:01:23.57,0:01:25.100,Default,,0000,0000,0000,,He thought it was transmitted by mosquitos.
Dialogue: 0,0:01:25.100,0:01:28.36,Default,,0000,0000,0000,,And they laughed at him. For 20 years, they called this guy
Dialogue: 0,0:01:28.36,0:01:31.85,Default,,0000,0000,0000,,"the mosquito man." But he ran an experiment in people,
Dialogue: 0,0:01:31.85,0:01:34.95,Default,,0000,0000,0000,,right? He had this hypothesis, and he tested it in people.
Dialogue: 0,0:01:34.95,0:01:39.60,Default,,0000,0000,0000,,So he got volunteers to go move to Cuba and live in tents
Dialogue: 0,0:01:39.60,0:01:42.63,Default,,0000,0000,0000,,and be voluntarily infected with yellow fever.
Dialogue: 0,0:01:42.63,0:01:45.65,Default,,0000,0000,0000,,So some of the people in some of the tents had dirty clothes
Dialogue: 0,0:01:45.65,0:01:46.87,Default,,0000,0000,0000,,and some of the people were in tents that were full
Dialogue: 0,0:01:46.87,0:01:49.13,Default,,0000,0000,0000,,of mosquitos that had been exposed to yellow fever.
Dialogue: 0,0:01:49.13,0:01:52.53,Default,,0000,0000,0000,,And it definitively proved that it wasn't this magic dust
Dialogue: 0,0:01:52.53,0:01:55.95,Default,,0000,0000,0000,,called fomites in your clothes that caused yellow fever.
Dialogue: 0,0:01:55.95,0:01:59.33,Default,,0000,0000,0000,,But it wasn't until we tested it in people that we actually knew.
Dialogue: 0,0:01:59.33,0:02:01.28,Default,,0000,0000,0000,,And this is what those people signed up for.
Dialogue: 0,0:02:01.28,0:02:04.38,Default,,0000,0000,0000,,This is what it looked like to have yellow fever in Cuba
Dialogue: 0,0:02:04.38,0:02:08.91,Default,,0000,0000,0000,,at that time. You suffered in a tent, in the heat, alone,
Dialogue: 0,0:02:08.91,0:02:11.60,Default,,0000,0000,0000,,and you probably died.
Dialogue: 0,0:02:11.60,0:02:14.82,Default,,0000,0000,0000,,But people volunteered for this.
Dialogue: 0,0:02:14.82,0:02:18.13,Default,,0000,0000,0000,,And it's not just a cool example of a scientific design
Dialogue: 0,0:02:18.13,0:02:21.05,Default,,0000,0000,0000,,of experiment in theory. They also did this beautiful thing.
Dialogue: 0,0:02:21.05,0:02:24.96,Default,,0000,0000,0000,,They signed this document, and it's called an informed consent document.
Dialogue: 0,0:02:24.96,0:02:27.48,Default,,0000,0000,0000,,And informed consent is an idea that we should be
Dialogue: 0,0:02:27.48,0:02:29.70,Default,,0000,0000,0000,,very proud of as a society, right? It's something that
Dialogue: 0,0:02:29.70,0:02:32.47,Default,,0000,0000,0000,,separates us from the Nazis at Nuremberg,
Dialogue: 0,0:02:32.47,0:02:35.34,Default,,0000,0000,0000,,enforced medical experimentation. It's the idea
Dialogue: 0,0:02:35.34,0:02:39.13,Default,,0000,0000,0000,,that agreement to join a study without understanding isn't agreement.
Dialogue: 0,0:02:39.13,0:02:43.24,Default,,0000,0000,0000,,It's something that protects us from harm, from hucksters,
Dialogue: 0,0:02:43.24,0:02:46.10,Default,,0000,0000,0000,,from people that would try to hoodwink us into a clinical
Dialogue: 0,0:02:46.10,0:02:49.85,Default,,0000,0000,0000,,study that we don't understand, or that we don't agree to.
Dialogue: 0,0:02:49.85,0:02:54.18,Default,,0000,0000,0000,,And so you put together the thread of narrative hypothesis,
Dialogue: 0,0:02:54.18,0:02:56.77,Default,,0000,0000,0000,,experimentation in humans, and informed consent,
Dialogue: 0,0:02:56.77,0:02:59.44,Default,,0000,0000,0000,,and you get what we call clinical study, and it's how we do
Dialogue: 0,0:02:59.44,0:03:02.45,Default,,0000,0000,0000,,the vast majority of medical work. It doesn't really matter
Dialogue: 0,0:03:02.45,0:03:04.80,Default,,0000,0000,0000,,if you're in the north, the south, the east, the west.
Dialogue: 0,0:03:04.80,0:03:08.91,Default,,0000,0000,0000,,Clinical studies form the basis of how we investigate,
Dialogue: 0,0:03:08.91,0:03:10.77,Default,,0000,0000,0000,,so if we're going to look at a new drug, right,
Dialogue: 0,0:03:10.77,0:03:13.76,Default,,0000,0000,0000,,we test it in people, we draw blood, we do experiments,
Dialogue: 0,0:03:13.76,0:03:16.09,Default,,0000,0000,0000,,and we gain consent for that study, to make sure
Dialogue: 0,0:03:16.09,0:03:18.74,Default,,0000,0000,0000,,that we're not screwing people over as part of it.
Dialogue: 0,0:03:18.74,0:03:22.41,Default,,0000,0000,0000,,But the world is changing around the clinical study,
Dialogue: 0,0:03:22.41,0:03:25.77,Default,,0000,0000,0000,,which has been fairly well established for tens of years
Dialogue: 0,0:03:25.77,0:03:27.67,Default,,0000,0000,0000,,if not 50 to 100 years.
Dialogue: 0,0:03:27.67,0:03:30.72,Default,,0000,0000,0000,,So now we're able to gather data about our genomes,
Dialogue: 0,0:03:30.72,0:03:33.58,Default,,0000,0000,0000,,but, as we saw earlier, our genomes aren't dispositive.
Dialogue: 0,0:03:33.58,0:03:36.35,Default,,0000,0000,0000,,We're able to gather information about our environment.
Dialogue: 0,0:03:36.35,0:03:38.26,Default,,0000,0000,0000,,And more importantly, we're able to gather information
Dialogue: 0,0:03:38.26,0:03:41.10,Default,,0000,0000,0000,,about our choices, because it turns out that what we think of
Dialogue: 0,0:03:41.10,0:03:43.82,Default,,0000,0000,0000,,as our health is more like the interaction of our bodies,
Dialogue: 0,0:03:43.82,0:03:47.47,Default,,0000,0000,0000,,our genomes, our choices and our environment.
Dialogue: 0,0:03:47.47,0:03:50.21,Default,,0000,0000,0000,,And the clinical methods that we've got aren't very good
Dialogue: 0,0:03:50.21,0:03:52.84,Default,,0000,0000,0000,,at studying that because they are based on the idea
Dialogue: 0,0:03:52.84,0:03:54.76,Default,,0000,0000,0000,,of person-to-person interaction. You interact
Dialogue: 0,0:03:54.76,0:03:56.85,Default,,0000,0000,0000,,with your doctor and you get enrolled in the study.
Dialogue: 0,0:03:56.85,0:03:59.47,Default,,0000,0000,0000,,So this is my grandfather. I actually never met him,
Dialogue: 0,0:03:59.47,0:04:03.26,Default,,0000,0000,0000,,but he's holding my mom, and his genes are in me, right?
Dialogue: 0,0:04:03.26,0:04:06.16,Default,,0000,0000,0000,,His choices ran through to me. He was a smoker,
Dialogue: 0,0:04:06.16,0:04:08.74,Default,,0000,0000,0000,,like most people were. This is my son.
Dialogue: 0,0:04:08.74,0:04:12.18,Default,,0000,0000,0000,,So my grandfather's genes go all the way through to him,
Dialogue: 0,0:04:12.18,0:04:14.73,Default,,0000,0000,0000,,and my choices are going to affect his health.
Dialogue: 0,0:04:14.73,0:04:17.43,Default,,0000,0000,0000,,The technology between these two pictures
Dialogue: 0,0:04:17.43,0:04:21.10,Default,,0000,0000,0000,,cannot be more different, but the methodology
Dialogue: 0,0:04:21.10,0:04:25.22,Default,,0000,0000,0000,,for clinical studies has not radically changed over that time period.
Dialogue: 0,0:04:25.22,0:04:27.89,Default,,0000,0000,0000,,We just have better statistics.
Dialogue: 0,0:04:27.89,0:04:31.34,Default,,0000,0000,0000,,The way we gain informed consent was formed in large part
Dialogue: 0,0:04:31.34,0:04:33.94,Default,,0000,0000,0000,,after World War II, around the time that picture was taken.
Dialogue: 0,0:04:33.94,0:04:37.87,Default,,0000,0000,0000,,That was 70 years ago, and the way we gain informed consent,
Dialogue: 0,0:04:37.87,0:04:40.75,Default,,0000,0000,0000,,this tool that was created to protect us from harm,
Dialogue: 0,0:04:40.75,0:04:44.41,Default,,0000,0000,0000,,now creates silos. So the data that we collect
Dialogue: 0,0:04:44.41,0:04:47.14,Default,,0000,0000,0000,,for prostate cancer or for Alzheimer's trials
Dialogue: 0,0:04:47.14,0:04:49.75,Default,,0000,0000,0000,,goes into silos where it can only be used
Dialogue: 0,0:04:49.75,0:04:52.98,Default,,0000,0000,0000,,for prostate cancer or for Alzheimer's research.
Dialogue: 0,0:04:52.98,0:04:55.87,Default,,0000,0000,0000,,Right? It can't be networked. It can't be integrated.
Dialogue: 0,0:04:55.87,0:04:59.40,Default,,0000,0000,0000,,It cannot be used by people who aren't credentialed.
Dialogue: 0,0:04:59.40,0:05:02.36,Default,,0000,0000,0000,,So a physicist can't get access to it without filing paperwork.
Dialogue: 0,0:05:02.36,0:05:05.42,Default,,0000,0000,0000,,A computer scientist can't get access to it without filing paperwork.
Dialogue: 0,0:05:05.42,0:05:09.57,Default,,0000,0000,0000,,Computer scientists aren't patient. They don't file paperwork.
Dialogue: 0,0:05:09.57,0:05:13.55,Default,,0000,0000,0000,,And this is an accident. These are tools that we created
Dialogue: 0,0:05:13.55,0:05:16.82,Default,,0000,0000,0000,,to protect us from harm, but what they're doing
Dialogue: 0,0:05:16.82,0:05:19.35,Default,,0000,0000,0000,,is protecting us from innovation now.
Dialogue: 0,0:05:19.35,0:05:22.62,Default,,0000,0000,0000,,And that wasn't the goal. It wasn't the point. Right?
Dialogue: 0,0:05:22.62,0:05:25.32,Default,,0000,0000,0000,,It's a side effect, if you will, of a power we created
Dialogue: 0,0:05:25.32,0:05:27.67,Default,,0000,0000,0000,,to take us for good.
Dialogue: 0,0:05:27.67,0:05:30.82,Default,,0000,0000,0000,,And so if you think about it, the depressing thing is that
Dialogue: 0,0:05:30.82,0:05:32.95,Default,,0000,0000,0000,,Facebook would never make a change to something
Dialogue: 0,0:05:32.95,0:05:35.52,Default,,0000,0000,0000,,as important as an advertising algorithm
Dialogue: 0,0:05:35.52,0:05:39.93,Default,,0000,0000,0000,,with a sample size as small as a Phase III clinical trial.
Dialogue: 0,0:05:39.93,0:05:43.60,Default,,0000,0000,0000,,We cannot take the information from past trials
Dialogue: 0,0:05:43.60,0:05:47.75,Default,,0000,0000,0000,,and put them together to form statistically significant samples.
Dialogue: 0,0:05:47.75,0:05:51.23,Default,,0000,0000,0000,,And that sucks, right? So 45 percent of men develop
Dialogue: 0,0:05:51.23,0:05:54.33,Default,,0000,0000,0000,,cancer. Thirty-eight percent of women develop cancer.
Dialogue: 0,0:05:54.33,0:05:56.67,Default,,0000,0000,0000,,One in four men dies of cancer.
Dialogue: 0,0:05:56.67,0:06:00.23,Default,,0000,0000,0000,,One in five women dies of cancer, at least in the United States.
Dialogue: 0,0:06:00.23,0:06:02.46,Default,,0000,0000,0000,,And three out of the four drugs we give you
Dialogue: 0,0:06:02.46,0:06:05.97,Default,,0000,0000,0000,,if you get cancer fail. And this is personal to me.
Dialogue: 0,0:06:05.97,0:06:07.93,Default,,0000,0000,0000,,My sister is a cancer survivor.
Dialogue: 0,0:06:07.93,0:06:11.52,Default,,0000,0000,0000,,My mother-in-law is a cancer survivor. Cancer sucks.
Dialogue: 0,0:06:11.52,0:06:13.71,Default,,0000,0000,0000,,And when you have it, you don't have a lot of privacy
Dialogue: 0,0:06:13.71,0:06:17.20,Default,,0000,0000,0000,,in the hospital. You're naked the vast majority of the time.
Dialogue: 0,0:06:17.20,0:06:20.90,Default,,0000,0000,0000,,People you don't know come in and look at you and poke you and prod you,
Dialogue: 0,0:06:20.90,0:06:24.34,Default,,0000,0000,0000,,and when I tell cancer survivors that this tool we created
Dialogue: 0,0:06:24.34,0:06:27.43,Default,,0000,0000,0000,,to protect them is actually preventing their data from being used,
Dialogue: 0,0:06:27.43,0:06:29.48,Default,,0000,0000,0000,,especially when only three to four percent of people
Dialogue: 0,0:06:29.48,0:06:32.28,Default,,0000,0000,0000,,who have cancer ever even sign up for a clinical study,
Dialogue: 0,0:06:32.28,0:06:35.84,Default,,0000,0000,0000,,their reaction is not, "Thank you, God, for protecting my privacy."
Dialogue: 0,0:06:35.84,0:06:38.54,Default,,0000,0000,0000,,It's outrage
Dialogue: 0,0:06:38.54,0:06:40.66,Default,,0000,0000,0000,,that we have this information and we can't use it.
Dialogue: 0,0:06:40.66,0:06:43.14,Default,,0000,0000,0000,,And it's an accident.
Dialogue: 0,0:06:43.14,0:06:46.19,Default,,0000,0000,0000,,So the cost in blood and treasure of this is enormous.
Dialogue: 0,0:06:46.19,0:06:49.85,Default,,0000,0000,0000,,Two hundred and twenty-six billion a year is spent on cancer in the United States.
Dialogue: 0,0:06:49.85,0:06:53.07,Default,,0000,0000,0000,,Fifteen hundred people a day die in the United States.
Dialogue: 0,0:06:53.07,0:06:55.64,Default,,0000,0000,0000,,And it's getting worse.
Dialogue: 0,0:06:55.64,0:06:58.62,Default,,0000,0000,0000,,So the good news is that some things have changed,
Dialogue: 0,0:06:58.62,0:07:00.18,Default,,0000,0000,0000,,and the most important thing that's changed
Dialogue: 0,0:07:00.18,0:07:02.51,Default,,0000,0000,0000,,is that we can now measure ourselves in ways
Dialogue: 0,0:07:02.51,0:07:05.57,Default,,0000,0000,0000,,that used to be the dominion of the health system.
Dialogue: 0,0:07:05.57,0:07:07.73,Default,,0000,0000,0000,,So a lot of people talk about it as digital exhaust.
Dialogue: 0,0:07:07.73,0:07:10.77,Default,,0000,0000,0000,,I like to think of it as the dust that runs along behind my kid.
Dialogue: 0,0:07:10.77,0:07:13.15,Default,,0000,0000,0000,,We can reach back and grab that dust,
Dialogue: 0,0:07:13.15,0:07:15.56,Default,,0000,0000,0000,,and we can learn a lot about health from it, so if our choices
Dialogue: 0,0:07:15.56,0:07:18.24,Default,,0000,0000,0000,,are part of our health, what we eat is a really important
Dialogue: 0,0:07:18.24,0:07:20.93,Default,,0000,0000,0000,,aspect of our health. So you can do something very simple
Dialogue: 0,0:07:20.93,0:07:22.89,Default,,0000,0000,0000,,and basic and take a picture of your food,
Dialogue: 0,0:07:22.89,0:07:25.77,Default,,0000,0000,0000,,and if enough people do that, we can learn a lot about
Dialogue: 0,0:07:25.77,0:07:27.20,Default,,0000,0000,0000,,how our food affects our health.
Dialogue: 0,0:07:27.20,0:07:31.71,Default,,0000,0000,0000,,One interesting thing that came out of this — this is an app for iPhones called The Eatery —
Dialogue: 0,0:07:31.71,0:07:34.20,Default,,0000,0000,0000,,is that we think our pizza is significantly healthier
Dialogue: 0,0:07:34.20,0:07:37.64,Default,,0000,0000,0000,,than other people's pizza is. Okay? (Laughter)
Dialogue: 0,0:07:37.64,0:07:41.25,Default,,0000,0000,0000,,And it seems like a trivial result, but this is the sort of research
Dialogue: 0,0:07:41.25,0:07:43.56,Default,,0000,0000,0000,,that used to take the health system years
Dialogue: 0,0:07:43.56,0:07:45.86,Default,,0000,0000,0000,,and hundreds of thousands of dollars to accomplish.
Dialogue: 0,0:07:45.86,0:07:49.58,Default,,0000,0000,0000,,It was done in five months by a startup company of a couple of people.
Dialogue: 0,0:07:49.58,0:07:52.20,Default,,0000,0000,0000,,I don't have any financial interest in it.
Dialogue: 0,0:07:52.20,0:07:54.90,Default,,0000,0000,0000,,But more nontrivially, we can get our genotypes done,
Dialogue: 0,0:07:54.90,0:07:57.72,Default,,0000,0000,0000,,and although our genotypes aren't dispositive, they give us clues.
Dialogue: 0,0:07:57.72,0:08:00.52,Default,,0000,0000,0000,,So I could show you mine. It's just A's, T's, C's and G's.
Dialogue: 0,0:08:00.52,0:08:02.76,Default,,0000,0000,0000,,This is the interpretation of it. As you can see,
Dialogue: 0,0:08:02.76,0:08:05.36,Default,,0000,0000,0000,,I carry a 32 percent risk of prostate cancer,
Dialogue: 0,0:08:05.36,0:08:09.58,Default,,0000,0000,0000,,22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease.
Dialogue: 0,0:08:09.58,0:08:12.18,Default,,0000,0000,0000,,So that means, if you're a geneticist, you're freaking out,
Dialogue: 0,0:08:12.18,0:08:16.22,Default,,0000,0000,0000,,going, "Oh my God, you told everyone you carry the ApoE E4 allele. What's wrong with you?"
Dialogue: 0,0:08:16.22,0:08:19.91,Default,,0000,0000,0000,,Right? When I got these results, I started talking to doctors,
Dialogue: 0,0:08:19.91,0:08:22.32,Default,,0000,0000,0000,,and they told me not to tell anyone, and my reaction is,
Dialogue: 0,0:08:22.32,0:08:25.60,Default,,0000,0000,0000,,"Is that going to help anyone cure me when I get the disease?"
Dialogue: 0,0:08:25.60,0:08:28.67,Default,,0000,0000,0000,,And no one could tell me yes.
Dialogue: 0,0:08:28.67,0:08:31.47,Default,,0000,0000,0000,,And I live in a web world where, when you share things,
Dialogue: 0,0:08:31.47,0:08:34.18,Default,,0000,0000,0000,,beautiful stuff happens, not bad stuff.
Dialogue: 0,0:08:34.18,0:08:36.08,Default,,0000,0000,0000,,So I started putting this in my slide decks,
Dialogue: 0,0:08:36.08,0:08:38.54,Default,,0000,0000,0000,,and I got even more obnoxious, and I went to my doctor,
Dialogue: 0,0:08:38.54,0:08:40.53,Default,,0000,0000,0000,,and I said, "I'd like to actually get my bloodwork.
Dialogue: 0,0:08:40.53,0:08:43.32,Default,,0000,0000,0000,,Please give me back my data." So this is my most recent bloodwork.
Dialogue: 0,0:08:43.32,0:08:45.69,Default,,0000,0000,0000,,As you can see, I have high cholesterol.
Dialogue: 0,0:08:45.69,0:08:48.44,Default,,0000,0000,0000,,I have particularly high bad cholesterol, and I have some
Dialogue: 0,0:08:48.44,0:08:51.44,Default,,0000,0000,0000,,bad liver numbers, but those are because we had a dinner party with a lot of good wine
Dialogue: 0,0:08:51.44,0:08:54.15,Default,,0000,0000,0000,,the night before we ran the test. (Laughter)
Dialogue: 0,0:08:54.15,0:08:58.56,Default,,0000,0000,0000,,Right. But look at how non-computable this information is.
Dialogue: 0,0:08:58.56,0:09:01.54,Default,,0000,0000,0000,,This is like the photograph of my granddad holding my mom
Dialogue: 0,0:09:01.54,0:09:05.14,Default,,0000,0000,0000,,from a data perspective, and I had to go into the system
Dialogue: 0,0:09:05.14,0:09:07.30,Default,,0000,0000,0000,,and get it out.
Dialogue: 0,0:09:07.30,0:09:10.58,Default,,0000,0000,0000,,So the thing that I'm proposing we do here
Dialogue: 0,0:09:10.58,0:09:12.100,Default,,0000,0000,0000,,is that we reach behind us and we grab the dust,
Dialogue: 0,0:09:12.100,0:09:15.97,Default,,0000,0000,0000,,that we reach into our bodies and we grab the genotype,
Dialogue: 0,0:09:15.97,0:09:18.67,Default,,0000,0000,0000,,and we reach into the medical system and we grab our records,
Dialogue: 0,0:09:18.67,0:09:22.11,Default,,0000,0000,0000,,and we use it to build something together, which is a commons.
Dialogue: 0,0:09:22.11,0:09:25.26,Default,,0000,0000,0000,,And there's been a lot of talk about commonses, right,
Dialogue: 0,0:09:25.26,0:09:28.21,Default,,0000,0000,0000,,here, there, everywhere, right. A commons is nothing more
Dialogue: 0,0:09:28.21,0:09:31.13,Default,,0000,0000,0000,,than a public good that we build out of private goods.
Dialogue: 0,0:09:31.13,0:09:33.90,Default,,0000,0000,0000,,We do it voluntarily, and we do it through standardized
Dialogue: 0,0:09:33.90,0:09:36.70,Default,,0000,0000,0000,,legal tools. We do it through standardized technologies.
Dialogue: 0,0:09:36.70,0:09:39.97,Default,,0000,0000,0000,,Right. That's all a commons is. It's something that we build
Dialogue: 0,0:09:39.97,0:09:42.49,Default,,0000,0000,0000,,together because we think it's important.
Dialogue: 0,0:09:42.49,0:09:45.13,Default,,0000,0000,0000,,And a commons of data is something that's really unique,
Dialogue: 0,0:09:45.13,0:09:47.99,Default,,0000,0000,0000,,because we make it from our own data. And although
Dialogue: 0,0:09:47.99,0:09:50.28,Default,,0000,0000,0000,,a lot of people like privacy as their methodology of control
Dialogue: 0,0:09:50.28,0:09:52.54,Default,,0000,0000,0000,,around data, and obsess around privacy, at least
Dialogue: 0,0:09:52.54,0:09:55.58,Default,,0000,0000,0000,,some of us really like to share as a form of control,
Dialogue: 0,0:09:55.58,0:09:57.94,Default,,0000,0000,0000,,and what's remarkable about digital commonses
Dialogue: 0,0:09:57.94,0:10:01.47,Default,,0000,0000,0000,,is you don't need a big percentage if your sample size is big enough
Dialogue: 0,0:10:01.47,0:10:03.98,Default,,0000,0000,0000,,to generate something massive and beautiful.
Dialogue: 0,0:10:03.98,0:10:06.54,Default,,0000,0000,0000,,So not that many programmers write free software,
Dialogue: 0,0:10:06.54,0:10:08.87,Default,,0000,0000,0000,,but we have the Apache web server.
Dialogue: 0,0:10:08.87,0:10:11.57,Default,,0000,0000,0000,,Not that many people who read Wikipedia edit,
Dialogue: 0,0:10:11.57,0:10:15.58,Default,,0000,0000,0000,,but it works. So as long as some people like to share
Dialogue: 0,0:10:15.58,0:10:19.32,Default,,0000,0000,0000,,as their form of control, we can build a commons, as long as we can get the information out.
Dialogue: 0,0:10:19.32,0:10:21.70,Default,,0000,0000,0000,,And in biology, the numbers are even better.
Dialogue: 0,0:10:21.70,0:10:24.25,Default,,0000,0000,0000,,So Vanderbilt ran a study asking people, we'd like to take
Dialogue: 0,0:10:24.25,0:10:27.57,Default,,0000,0000,0000,,your biosamples, your blood, and share them in a biobank,
Dialogue: 0,0:10:27.57,0:10:29.94,Default,,0000,0000,0000,,and only five percent of the people opted out.
Dialogue: 0,0:10:29.94,0:10:33.04,Default,,0000,0000,0000,,I'm from Tennessee. It's not the most science-positive state
Dialogue: 0,0:10:33.04,0:10:36.08,Default,,0000,0000,0000,,in the United States of America. (Laughter)
Dialogue: 0,0:10:36.08,0:10:38.45,Default,,0000,0000,0000,,But only five percent of the people wanted out.
Dialogue: 0,0:10:38.45,0:10:42.48,Default,,0000,0000,0000,,So people like to share, if you give them the opportunity and the choice.
Dialogue: 0,0:10:42.48,0:10:46.96,Default,,0000,0000,0000,,And the reason that I got obsessed with this, besides the obvious family aspects,
Dialogue: 0,0:10:46.96,0:10:50.23,Default,,0000,0000,0000,,is that I spend a lot of time around mathematicians,
Dialogue: 0,0:10:50.23,0:10:53.15,Default,,0000,0000,0000,,and mathematicians are drawn to places where there's a lot of data
Dialogue: 0,0:10:53.15,0:10:56.09,Default,,0000,0000,0000,,because they can use it to tease signals out of noise.
Dialogue: 0,0:10:56.09,0:10:59.06,Default,,0000,0000,0000,,And those correlations that they can tease out, they're not
Dialogue: 0,0:10:59.06,0:11:02.93,Default,,0000,0000,0000,,necessarily causal agents, but math, in this day and age,
Dialogue: 0,0:11:02.93,0:11:05.29,Default,,0000,0000,0000,,is like a giant set of power tools
Dialogue: 0,0:11:05.29,0:11:09.16,Default,,0000,0000,0000,,that we're leaving on the floor, not plugged in in health,
Dialogue: 0,0:11:09.16,0:11:11.48,Default,,0000,0000,0000,,while we use hand saws.
Dialogue: 0,0:11:11.48,0:11:15.92,Default,,0000,0000,0000,,If we have a lot of shared genotypes, and a lot of shared
Dialogue: 0,0:11:15.92,0:11:18.66,Default,,0000,0000,0000,,outcomes, and a lot of shared lifestyle choices,
Dialogue: 0,0:11:18.66,0:11:21.44,Default,,0000,0000,0000,,and a lot of shared environmental information, we can start
Dialogue: 0,0:11:21.44,0:11:24.34,Default,,0000,0000,0000,,to tease out the correlations between subtle variations
Dialogue: 0,0:11:24.34,0:11:29.65,Default,,0000,0000,0000,,in people, the choices they make and the health that they create as a result of those choices,
Dialogue: 0,0:11:29.65,0:11:32.13,Default,,0000,0000,0000,,and there's open-source infrastructure to do all of this.
Dialogue: 0,0:11:32.13,0:11:35.23,Default,,0000,0000,0000,,Sage Bionetworks is a nonprofit that's built a giant math system
Dialogue: 0,0:11:35.23,0:11:39.80,Default,,0000,0000,0000,,that's waiting for data, but there isn't any.
Dialogue: 0,0:11:39.80,0:11:43.69,Default,,0000,0000,0000,,So that's what I do. I've actually started what we think is
Dialogue: 0,0:11:43.69,0:11:47.62,Default,,0000,0000,0000,,the world's first fully digital, fully self-contributed,
Dialogue: 0,0:11:47.62,0:11:52.66,Default,,0000,0000,0000,,unlimited in scope, global in participation, ethically approved
Dialogue: 0,0:11:52.66,0:11:56.31,Default,,0000,0000,0000,,clinical research study where you contribute the data.
Dialogue: 0,0:11:56.31,0:11:58.52,Default,,0000,0000,0000,,So if you reach behind yourself and you grab the dust,
Dialogue: 0,0:11:58.52,0:12:01.15,Default,,0000,0000,0000,,if you reach into your body and grab your genome,
Dialogue: 0,0:12:01.15,0:12:04.19,Default,,0000,0000,0000,,if you reach into the medical system and somehow extract your medical record,
Dialogue: 0,0:12:04.19,0:12:07.52,Default,,0000,0000,0000,,you can actually go through an online informed consent process --
Dialogue: 0,0:12:07.52,0:12:10.16,Default,,0000,0000,0000,,because the donation to the commons must be voluntary
Dialogue: 0,0:12:10.16,0:12:12.96,Default,,0000,0000,0000,,and it must be informed -- and you can actually upload
Dialogue: 0,0:12:12.96,0:12:15.55,Default,,0000,0000,0000,,your information and have it syndicated to the
Dialogue: 0,0:12:15.55,0:12:18.64,Default,,0000,0000,0000,,mathematicians who will do this sort of big data research,
Dialogue: 0,0:12:18.64,0:12:21.50,Default,,0000,0000,0000,,and the goal is to get 100,000 in the first year
Dialogue: 0,0:12:21.50,0:12:23.86,Default,,0000,0000,0000,,and a million in the first five years so that we have
Dialogue: 0,0:12:23.86,0:12:27.69,Default,,0000,0000,0000,,a statistically significant cohort that you can use to take
Dialogue: 0,0:12:27.69,0:12:30.11,Default,,0000,0000,0000,,smaller sample sizes from traditional research
Dialogue: 0,0:12:30.11,0:12:31.71,Default,,0000,0000,0000,,and map it against,
Dialogue: 0,0:12:31.71,0:12:34.63,Default,,0000,0000,0000,,so that you can use it to tease out those subtle correlations
Dialogue: 0,0:12:34.63,0:12:37.16,Default,,0000,0000,0000,,between the variations that make us unique
Dialogue: 0,0:12:37.16,0:12:41.19,Default,,0000,0000,0000,,and the kinds of health that we need to move forward as a society.
Dialogue: 0,0:12:41.19,0:12:44.21,Default,,0000,0000,0000,,And I've spent a lot of time around other commons.
Dialogue: 0,0:12:44.21,0:12:46.89,Default,,0000,0000,0000,,I've been around the early web. I've been around
Dialogue: 0,0:12:46.89,0:12:49.50,Default,,0000,0000,0000,,the early creative commons world, and there's four things
Dialogue: 0,0:12:49.50,0:12:52.85,Default,,0000,0000,0000,,that all of these share, which is, they're all really simple.
Dialogue: 0,0:12:52.85,0:12:55.58,Default,,0000,0000,0000,,And so if you were to go to the website and enroll in this study,
Dialogue: 0,0:12:55.58,0:12:57.84,Default,,0000,0000,0000,,you're not going to see something complicated.
Dialogue: 0,0:12:57.84,0:13:02.88,Default,,0000,0000,0000,,But it's not simplistic. These things are weak intentionally,
Dialogue: 0,0:13:02.88,0:13:05.91,Default,,0000,0000,0000,,right, because you can always add power and control to a system,
Dialogue: 0,0:13:05.91,0:13:09.87,Default,,0000,0000,0000,,but it's very difficult to remove those things if you put them in at the beginning,
Dialogue: 0,0:13:09.87,0:13:12.42,Default,,0000,0000,0000,,and so being simple doesn't mean being simplistic,
Dialogue: 0,0:13:12.42,0:13:14.60,Default,,0000,0000,0000,,and being weak doesn't mean weakness.
Dialogue: 0,0:13:14.60,0:13:16.95,Default,,0000,0000,0000,,Those are strengths in the system.
Dialogue: 0,0:13:16.95,0:13:19.62,Default,,0000,0000,0000,,And open doesn't mean that there's no money.
Dialogue: 0,0:13:19.62,0:13:22.64,Default,,0000,0000,0000,,Closed systems, corporations, make a lot of money
Dialogue: 0,0:13:22.64,0:13:26.18,Default,,0000,0000,0000,,on the open web, and they're one of the reasons why the open web lives
Dialogue: 0,0:13:26.18,0:13:29.00,Default,,0000,0000,0000,,is that corporations have a vested interest in the openness
Dialogue: 0,0:13:29.00,0:13:31.34,Default,,0000,0000,0000,,of the system.
Dialogue: 0,0:13:31.34,0:13:35.13,Default,,0000,0000,0000,,And so all of these things are part of the clinical study that we've created,
Dialogue: 0,0:13:35.13,0:13:38.56,Default,,0000,0000,0000,,so you can actually come in, all you have to be is 14 years old,
Dialogue: 0,0:13:38.56,0:13:40.59,Default,,0000,0000,0000,,willing to sign a contract that says I'm not going to be a jerk,
Dialogue: 0,0:13:40.59,0:13:43.25,Default,,0000,0000,0000,,basically, and you're in.
Dialogue: 0,0:13:43.25,0:13:44.82,Default,,0000,0000,0000,,You can start analyzing the data.
Dialogue: 0,0:13:44.82,0:13:48.98,Default,,0000,0000,0000,,You do have to solve a CAPTCHA as well. (Laughter)
Dialogue: 0,0:13:48.98,0:13:52.56,Default,,0000,0000,0000,,And if you'd like to build corporate structures on top of it,
Dialogue: 0,0:13:52.56,0:13:55.71,Default,,0000,0000,0000,,that's okay too. That's all in the consent,
Dialogue: 0,0:13:55.71,0:13:58.27,Default,,0000,0000,0000,,so if you don't like those terms, you don't come in.
Dialogue: 0,0:13:58.27,0:14:01.37,Default,,0000,0000,0000,,It's very much the design principles of a commons
Dialogue: 0,0:14:01.37,0:14:03.96,Default,,0000,0000,0000,,that we're trying to bring to health data.
Dialogue: 0,0:14:03.96,0:14:06.94,Default,,0000,0000,0000,,And the other thing about these systems is that it only takes
Dialogue: 0,0:14:06.94,0:14:10.12,Default,,0000,0000,0000,,a small number of really unreasonable people working together
Dialogue: 0,0:14:10.12,0:14:13.30,Default,,0000,0000,0000,,to create them. It didn't take that many people
Dialogue: 0,0:14:13.30,0:14:16.77,Default,,0000,0000,0000,,to make Wikipedia Wikipedia, or to keep it Wikipedia.
Dialogue: 0,0:14:16.77,0:14:18.84,Default,,0000,0000,0000,,And we're not supposed to be unreasonable in health,
Dialogue: 0,0:14:18.84,0:14:21.12,Default,,0000,0000,0000,,and so I hate this word "patient."
Dialogue: 0,0:14:21.12,0:14:24.28,Default,,0000,0000,0000,,I don't like being patient when systems are broken,
Dialogue: 0,0:14:24.28,0:14:26.91,Default,,0000,0000,0000,,and health care is broken.
Dialogue: 0,0:14:26.91,0:14:31.07,Default,,0000,0000,0000,,I'm not talking about the politics of health care, I'm talking about the way we scientifically approach health care.
Dialogue: 0,0:14:31.07,0:14:34.34,Default,,0000,0000,0000,,So I don't want to be patient. And the task I'm giving to you
Dialogue: 0,0:14:34.34,0:14:37.39,Default,,0000,0000,0000,,is to not be patient. So I'd like you to actually try,
Dialogue: 0,0:14:37.39,0:14:40.11,Default,,0000,0000,0000,,when you go home, to get your data.
Dialogue: 0,0:14:40.11,0:14:42.82,Default,,0000,0000,0000,,You'll be shocked and offended and, I would bet, outraged,
Dialogue: 0,0:14:42.82,0:14:45.70,Default,,0000,0000,0000,,at how hard it is to get it.
Dialogue: 0,0:14:45.70,0:14:48.32,Default,,0000,0000,0000,,But it's a challenge that I hope you'll take,
Dialogue: 0,0:14:48.32,0:14:50.78,Default,,0000,0000,0000,,and maybe you'll share it. Maybe you won't.
Dialogue: 0,0:14:50.78,0:14:52.22,Default,,0000,0000,0000,,If you don't have anyone in your family who's sick,
Dialogue: 0,0:14:52.22,0:14:55.22,Default,,0000,0000,0000,,maybe you wouldn't be unreasonable. But if you do,
Dialogue: 0,0:14:55.22,0:14:57.42,Default,,0000,0000,0000,,or if you've been sick, then maybe you would.
Dialogue: 0,0:14:57.42,0:15:00.51,Default,,0000,0000,0000,,And we're going to be able to do an experiment in the next several months
Dialogue: 0,0:15:00.51,0:15:03.67,Default,,0000,0000,0000,,that lets us know exactly how many unreasonable people are out there.
Dialogue: 0,0:15:03.67,0:15:05.79,Default,,0000,0000,0000,,So this is the Athena Breast Health Network. It's a study
Dialogue: 0,0:15:05.79,0:15:09.61,Default,,0000,0000,0000,,of 150,000 women in California, and they're going to
Dialogue: 0,0:15:09.61,0:15:12.33,Default,,0000,0000,0000,,return all the data to the participants of the study
Dialogue: 0,0:15:12.33,0:15:15.47,Default,,0000,0000,0000,,in a computable form, with one-clickability to load it into
Dialogue: 0,0:15:15.47,0:15:18.09,Default,,0000,0000,0000,,the study that I've put together. So we'll know exactly
Dialogue: 0,0:15:18.09,0:15:20.39,Default,,0000,0000,0000,,how many people are willing to be unreasonable.
Dialogue: 0,0:15:20.39,0:15:22.78,Default,,0000,0000,0000,,So what I'd end [with] is,
Dialogue: 0,0:15:22.78,0:15:26.10,Default,,0000,0000,0000,,the most beautiful thing I've learned since I quit my job
Dialogue: 0,0:15:26.10,0:15:29.48,Default,,0000,0000,0000,,almost a year ago to do this, is that it really doesn't take
Dialogue: 0,0:15:29.48,0:15:33.29,Default,,0000,0000,0000,,very many of us to achieve spectacular results.
Dialogue: 0,0:15:33.29,0:15:36.00,Default,,0000,0000,0000,,You just have to be willing to be unreasonable,
Dialogue: 0,0:15:36.00,0:15:38.33,Default,,0000,0000,0000,,and the risk we're running is not the risk those 14 men
Dialogue: 0,0:15:38.33,0:15:40.20,Default,,0000,0000,0000,,who got yellow fever ran. Right?
Dialogue: 0,0:15:40.20,0:15:43.06,Default,,0000,0000,0000,,It's to be naked, digitally, in public. So you know more
Dialogue: 0,0:15:43.06,0:15:46.49,Default,,0000,0000,0000,,about me and my health than I know about you. It's asymmetric now.
Dialogue: 0,0:15:46.49,0:15:50.12,Default,,0000,0000,0000,,And being naked and alone can be terrifying.
Dialogue: 0,0:15:50.12,0:15:54.59,Default,,0000,0000,0000,,But to be naked in a group, voluntarily, can be quite beautiful.
Dialogue: 0,0:15:54.59,0:15:56.48,Default,,0000,0000,0000,,And so it doesn't take all of us.
Dialogue: 0,0:15:56.48,0:15:59.48,Default,,0000,0000,0000,,It just takes all of some of us. Thank you.
Dialogue: 0,0:15:59.48,0:16:05.07,Default,,0000,0000,0000,,(Applause)