Let's pool our medical data - John Wilbanks
so<00:00:15.960> I<00:00:16.020> have<00:00:16.199> bad<00:00:16.590> news<00:00:16.619> I<00:00:17.340> have<00:00:17.730> good<00:00:17.910> news<00:00:17.970> and
so I have bad news I have good news and
so I have bad news I have good news and
I<00:00:18.810> have<00:00:18.840> a<00:00:18.960> task<00:00:19.850> so<00:00:20.850> the<00:00:20.939> bad<00:00:21.090> news<00:00:21.359> is<00:00:21.390> that<00:00:21.720> we
I have a task so the bad news is that we
I have a task so the bad news is that we
all<00:00:22.230> get<00:00:22.380> sick<00:00:22.619> I<00:00:22.890> get<00:00:23.789> sick<00:00:24.029> you<00:00:24.210> get<00:00:24.420> sick
all get sick I get sick you get sick
all get sick I get sick you get sick
right<00:00:25.590> every<00:00:25.920> one<00:00:26.070> of<00:00:26.189> us<00:00:26.250> gets<00:00:26.430> sick<00:00:26.699> and<00:00:26.880> the
right every one of us gets sick and the
right every one of us gets sick and the
question<00:00:27.240> really<00:00:27.390> is<00:00:27.570> how<00:00:28.050> sick<00:00:28.800> do<00:00:28.949> we<00:00:29.039> get<00:00:29.220> is
question really is how sick do we get is
question really is how sick do we get is
it<00:00:29.970> something<00:00:30.150> that<00:00:30.300> kills<00:00:30.630> us<00:00:30.840> is<00:00:30.990> something
it something that kills us is something
it something that kills us is something
that<00:00:31.470> we<00:00:31.590> survive<00:00:31.949> is<00:00:32.279> it<00:00:32.759> something<00:00:32.880> that<00:00:33.000> we
that we survive is it something that we
that we survive is it something that we
can<00:00:33.239> treat<00:00:33.540> and<00:00:33.980> we've<00:00:34.980> gotten<00:00:35.280> sick<00:00:35.579> as<00:00:35.820> long
can treat and we've gotten sick as long
can treat and we've gotten sick as long
as<00:00:36.270> we've<00:00:36.420> been<00:00:36.450> people<00:00:36.930> and<00:00:37.079> so<00:00:37.649> we've<00:00:37.739> always
as we've been people and so we've always
as we've been people and so we've always
looked<00:00:38.129> for<00:00:38.399> reasons<00:00:38.730> to<00:00:38.850> explain<00:00:38.940> why<00:00:39.899> we<00:00:40.110> get
looked for reasons to explain why we get
looked for reasons to explain why we get
sick<00:00:40.530> and<00:00:40.850> for<00:00:41.850> a<00:00:41.879> long<00:00:42.090> time<00:00:42.270> it<00:00:42.390> was<00:00:42.420> the<00:00:42.600> gods
sick and for a long time it was the gods
sick and for a long time it was the gods
right<00:00:43.200> the<00:00:43.320> gods<00:00:43.530> are<00:00:43.800> angry<00:00:43.950> with<00:00:44.250> me<00:00:44.520> or<00:00:44.640> the
right the gods are angry with me or the
right the gods are angry with me or the
gods<00:00:44.940> are<00:00:45.120> testing<00:00:45.600> me<00:00:45.780> right<00:00:46.530> or<00:00:46.739> God
gods are testing me right or God
gods are testing me right or God
singular<00:00:47.910> more<00:00:48.270> recently<00:00:48.690> is<00:00:49.469> punishing<00:00:50.010> me
singular more recently is punishing me
singular more recently is punishing me
or<00:00:50.219> judging<00:00:50.579> me<00:00:50.700> and<00:00:50.989> as<00:00:51.989> long<00:00:52.110> as<00:00:52.260> you<00:00:52.320> look
or judging me and as long as you look
or judging me and as long as you look
for<00:00:52.680> explanations<00:00:54.110> we've<00:00:55.110> wound<00:00:55.320> up<00:00:55.500> with
for explanations we've wound up with
for explanations we've wound up with
something<00:00:55.920> that<00:00:55.949> gets<00:00:56.129> closer<00:00:56.399> and<00:00:56.489> closer<00:00:56.670> to
something that gets closer and closer to
something that gets closer and closer to
science<00:00:57.239> which<00:00:57.629> is<00:00:57.750> hypotheses<00:00:58.469> as<00:00:58.649> to<00:00:58.680> why<00:00:58.859> we
science which is hypotheses as to why we
science which is hypotheses as to why we
get<00:00:59.160> sick<00:00:59.399> and<00:00:59.609> as<00:01:00.480> long<00:01:00.629> as<00:01:00.750> you've<00:01:00.870> had<00:01:01.020> I
get sick and as long as you've had I
get sick and as long as you've had I
policies<00:01:01.500> about<00:01:01.649> why<00:01:01.890> we<00:01:02.070> get<00:01:02.190> sick<00:01:02.399> we've
policies about why we get sick we've
policies about why we get sick we've
tried<00:01:02.730> to<00:01:02.760> treat<00:01:03.059> it<00:01:03.210> as<00:01:03.300> well<00:01:03.979> this<00:01:04.979> is<00:01:05.100> Ava's
tried to treat it as well this is Ava's
tried to treat it as well this is Ava's
Sena<00:01:05.610> he<00:01:05.820> wrote<00:01:05.939> a<00:01:05.970> book<00:01:06.060> over<00:01:06.450> a<00:01:06.510> thousand
Sena he wrote a book over a thousand
Sena he wrote a book over a thousand
years<00:01:07.020> ago<00:01:07.200> called<00:01:07.500> the<00:01:07.560> Canon<00:01:07.950> of<00:01:08.010> medicine
years ago called the Canon of medicine
years ago called the Canon of medicine
and<00:01:08.689> the<00:01:09.689> rules<00:01:09.930> he<00:01:10.140> laid<00:01:10.290> out<00:01:10.409> for<00:01:10.530> testing
and the rules he laid out for testing
and the rules he laid out for testing
medicines<00:01:11.310> are<00:01:11.460> actually<00:01:11.760> really<00:01:11.909> similar<00:01:12.210> to
medicines are actually really similar to
medicines are actually really similar to
the<00:01:12.420> rules<00:01:12.630> we<00:01:12.810> have<00:01:12.960> today<00:01:13.170> that<00:01:13.470> the<00:01:14.070> disease
the rules we have today that the disease
the rules we have today that the disease
and<00:01:14.670> the<00:01:14.729> medicine<00:01:15.090> must<00:01:15.150> be<00:01:15.299> the<00:01:15.390> same
and the medicine must be the same
and the medicine must be the same
strength<00:01:15.960> the<00:01:16.650> medicine<00:01:16.950> needs<00:01:17.040> to<00:01:17.159> be<00:01:17.250> pure
strength the medicine needs to be pure
strength the medicine needs to be pure
and<00:01:17.850> in<00:01:18.060> the<00:01:18.150> end<00:01:18.270> we<00:01:18.299> need<00:01:18.479> to<00:01:18.570> test<00:01:18.810> it<00:01:19.020> in
and in the end we need to test it in
and in the end we need to test it in
people<00:01:19.710> and<00:01:19.860> so<00:01:20.670> if<00:01:20.729> you<00:01:20.759> put<00:01:20.939> together<00:01:21.270> these
people and so if you put together these
people and so if you put together these
themes<00:01:21.869> of<00:01:22.049> a<00:01:22.140> narrative<00:01:22.470> or<00:01:22.680> a<00:01:22.740> hypothesis
themes of a narrative or a hypothesis
themes of a narrative or a hypothesis
and<00:01:23.670> human<00:01:24.509> testing<00:01:25.670> right<00:01:26.670> you<00:01:26.939> get<00:01:27.119> some
and human testing right you get some
and human testing right you get some
beautiful<00:01:28.200> results<00:01:28.710> even<00:01:28.890> we<00:01:29.159> didn't<00:01:29.340> have
beautiful results even we didn't have
beautiful results even we didn't have
very<00:01:29.490> good<00:01:29.579> technologies<00:01:30.240> this<00:01:30.420> is<00:01:30.540> a<00:01:30.600> guy
very good technologies this is a guy
very good technologies this is a guy
named<00:01:30.900> Carlos<00:01:31.290> Finley<00:01:31.710> he<00:01:32.369> had<00:01:32.490> hypothesis
named Carlos Finley he had hypothesis
named Carlos Finley he had hypothesis
that<00:01:33.150> was<00:01:33.390> way<00:01:33.689> outside<00:01:33.840> the<00:01:34.049> box<00:01:34.170> for<00:01:34.500> his
that was way outside the box for his
that was way outside the box for his
time<00:01:34.890> and<00:01:35.100> they<00:01:35.159> late<00:01:35.430> 1800s<00:01:36.030> he<00:01:36.119> thought
time and they late 1800s he thought
time and they late 1800s he thought
yellow<00:01:36.570> fever<00:01:36.810> was<00:01:37.049> not<00:01:37.229> transmitted<00:01:37.829> by
yellow fever was not transmitted by
yellow fever was not transmitted by
dirty<00:01:38.250> clothing<00:01:38.640> he<00:01:39.479> thought<00:01:39.659> it<00:01:39.720> was
dirty clothing he thought it was
dirty clothing he thought it was
transmitted<00:01:40.290> by<00:01:40.350> mosquitoes<00:01:40.860> and<00:01:41.130> they
transmitted by mosquitoes and they
transmitted by mosquitoes and they
laughed<00:01:42.210> at<00:01:42.360> him<00:01:42.450> for<00:01:42.570> 20<00:01:42.899> years<00:01:43.170> they<00:01:43.350> called
laughed at him for 20 years they called
laughed at him for 20 years they called
this<00:01:43.649> guy<00:01:43.770> the<00:01:43.829> mosquito<00:01:44.340> man<00:01:44.840> but<00:01:45.840> he<00:01:45.930> ran<00:01:46.049> an
this guy the mosquito man but he ran an
this guy the mosquito man but he ran an
experiment<00:01:46.560> in<00:01:46.860> people<00:01:47.280> right<00:01:47.610> he<00:01:47.670> had<00:01:47.759> his
experiment in people right he had his
experiment in people right he had his
hypothesis<00:01:48.479> and<00:01:48.720> he<00:01:49.140> tested<00:01:49.530> in<00:01:49.619> people<00:01:49.979> so<00:01:50.640> he
hypothesis and he tested in people so he
hypothesis and he tested in people so he
got<00:01:50.850> volunteers<00:01:51.659> to<00:01:52.200> go<00:01:52.290> move<00:01:52.530> to<00:01:52.560> Cuba<00:01:53.130> and
got volunteers to go move to Cuba and
got volunteers to go move to Cuba and
live<00:01:53.939> in<00:01:54.060> tents<00:01:54.390> and<00:01:54.780> be<00:01:55.110> voluntarily
live in tents and be voluntarily
live in tents and be voluntarily
infected<00:01:56.340> with<00:01:56.939> yellow<00:01:57.180> fever<00:01:57.450> so<00:01:58.079> some<00:01:58.259> of
infected with yellow fever so some of
infected with yellow fever so some of
the<00:01:58.409> people<00:01:58.680> in<00:01:58.770> some<00:01:58.920> of<00:01:59.009> the<00:01:59.070> tents<00:01:59.369> had
the people in some of the tents had
the people in some of the tents had
dirty<00:01:59.790> clothes<00:02:00.149> and<00:02:00.570> some<00:02:01.110> of<00:02:01.200> the<00:02:01.259> people
dirty clothes and some of the people
dirty clothes and some of the people
were<00:02:01.590> in<00:02:01.710> tents<00:02:01.979> that<00:02:02.009> were<00:02:02.159> full<00:02:02.340> of
were in tents that were full of
were in tents that were full of
mosquitoes<00:02:02.880> that<00:02:02.909> have<00:02:03.119> an<00:02:03.180> exposed<00:02:03.540> to
mosquitoes that have an exposed to
mosquitoes that have an exposed to
yellow<00:02:03.899> fever<00:02:04.170> and<00:02:04.469> it<00:02:05.280> definitively<00:02:05.640> proved
yellow fever and it definitively proved
yellow fever and it definitively proved
that<00:02:06.570> it<00:02:06.719> wasn't<00:02:06.990> this<00:02:07.110> magic<00:02:07.560> dust<00:02:07.860> called
that it wasn't this magic dust called
that it wasn't this magic dust called
fomites<00:02:08.580> and<00:02:08.940> your<00:02:09.030> clothes<00:02:09.360> that<00:02:09.660> caused
fomites and your clothes that caused
fomites and your clothes that caused
yellow<00:02:10.110> fever<00:02:10.670> if<00:02:11.670> it<00:02:11.790> wasn't<00:02:12.090> until<00:02:12.209> we
yellow fever if it wasn't until we
yellow fever if it wasn't until we
tested<00:02:12.660> in<00:02:12.780> people<00:02:13.140> that<00:02:13.170> we<00:02:13.319> actually
tested in people that we actually
tested in people that we actually
and<00:02:14.190> this<00:02:15.180> is<00:02:15.330> what<00:02:15.480> those<00:02:15.630> people<00:02:15.900> signed<00:02:16.319> up
and this is what those people signed up
and this is what those people signed up
for<00:02:16.740> this<00:02:16.890> is<00:02:17.040> what<00:02:17.250> it<00:02:17.520> looked<00:02:17.850> like<00:02:17.970> to<00:02:18.270> have
for this is what it looked like to have
for this is what it looked like to have
yellow<00:02:18.720> fever<00:02:18.930> in<00:02:19.170> Cuba<00:02:19.590> at<00:02:19.800> that<00:02:20.190> time<00:02:20.430> you
yellow fever in Cuba at that time you
yellow fever in Cuba at that time you
suffered<00:02:20.970> in<00:02:21.090> a<00:02:21.150> tent<00:02:21.450> in<00:02:21.690> the<00:02:21.750> heat<00:02:22.760> alone<00:02:23.760> and
suffered in a tent in the heat alone and
suffered in a tent in the heat alone and
you<00:02:24.630> probably<00:02:24.930> died<00:02:26.360> but<00:02:27.360> people<00:02:27.600> volunteered
you probably died but people volunteered
you probably died but people volunteered
for<00:02:28.740> this<00:02:28.890> and<00:02:30.020> it's<00:02:31.020> not<00:02:31.140> just<00:02:31.560> a<00:02:31.650> cool
for this and it's not just a cool
for this and it's not just a cool
example<00:02:32.430> of<00:02:32.580> a<00:02:32.640> scientific<00:02:33.030> design<00:02:33.450> of
example of a scientific design of
example of a scientific design of
experiment<00:02:34.200> in<00:02:34.260> theory<00:02:34.650> they<00:02:34.800> also<00:02:35.010> did<00:02:35.670> this
experiment in theory they also did this
experiment in theory they also did this
beautiful<00:02:36.180> thing<00:02:36.360> they<00:02:36.480> signed<00:02:36.750> this
beautiful thing they signed this
beautiful thing they signed this
document<00:02:37.020> and<00:02:37.650> it's<00:02:38.130> called<00:02:38.340> an<00:02:38.459> informed
document and it's called an informed
document and it's called an informed
consent<00:02:39.180> document<00:02:39.720> an<00:02:40.280> informed<00:02:41.280> consent<00:02:41.640> is
consent document an informed consent is
consent document an informed consent is
an<00:02:42.000> idea<00:02:42.239> that<00:02:42.300> we<00:02:42.600> should<00:02:42.660> be<00:02:42.780> very<00:02:42.930> proud<00:02:43.170> of
an idea that we should be very proud of
an idea that we should be very proud of
as<00:02:43.620> a<00:02:43.650> society<00:02:44.040> right<00:02:44.400> it's<00:02:44.550> something<00:02:44.730> that
as a society right it's something that
as a society right it's something that
separates<00:02:45.300> us<00:02:45.569> from<00:02:45.810> the<00:02:46.350> Nazis<00:02:46.770> at<00:02:46.950> Nuremberg
separates us from the Nazis at Nuremberg
separates us from the Nazis at Nuremberg
and<00:02:47.610> forced<00:02:48.450> medical<00:02:48.540> experimentation<00:02:49.320> it's
and forced medical experimentation it's
and forced medical experimentation it's
the<00:02:49.770> idea<00:02:50.220> that<00:02:50.610> agreement<00:02:51.570> to<00:02:51.870> join<00:02:52.080> a<00:02:52.110> study
the idea that agreement to join a study
the idea that agreement to join a study
without<00:02:52.650> understanding<00:02:53.010> isn't<00:02:53.610> agreement
without understanding isn't agreement
without understanding isn't agreement
it's<00:02:55.500> something<00:02:55.769> that<00:02:55.890> protects<00:02:56.310> us<00:02:56.580> from
it's something that protects us from
it's something that protects us from
harm<00:02:57.660> from<00:02:57.959> hucksters<00:02:58.470> from<00:02:58.709> people<00:02:59.010> that
harm from hucksters from people that
harm from hucksters from people that
would<00:02:59.250> try<00:02:59.459> to<00:02:59.489> hoodwink<00:02:59.970> us<00:03:00.320> into<00:03:01.320> a<00:03:01.350> clinical
would try to hoodwink us into a clinical
would try to hoodwink us into a clinical
study<00:03:01.980> that<00:03:02.220> we<00:03:02.310> don't<00:03:02.459> understand<00:03:02.970> or<00:03:03.660> that
study that we don't understand or that
study that we don't understand or that
we<00:03:03.900> don't<00:03:03.989> agree<00:03:04.200> to<00:03:04.290> and<00:03:04.739> so<00:03:05.519> you<00:03:05.580> put
we don't agree to and so you put
we don't agree to and so you put
together<00:03:06.150> the<00:03:06.330> thread<00:03:06.630> of<00:03:07.519> narrative
together the thread of narrative
together the thread of narrative
hypothesis<00:03:09.440> experimentation<00:03:10.440> and<00:03:10.560> human<00:03:10.890> and
hypothesis experimentation and human and
hypothesis experimentation and human and
informed<00:03:11.280> consent<00:03:11.310> and<00:03:11.850> you<00:03:12.150> get<00:03:12.360> what<00:03:12.810> we
informed consent and you get what we
informed consent and you get what we
call<00:03:12.930> clinical<00:03:13.560> study<00:03:13.769> and<00:03:14.040> it's<00:03:14.489> how<00:03:14.580> we<00:03:14.640> do
call clinical study and it's how we do
call clinical study and it's how we do
the<00:03:15.120> vast<00:03:15.300> majority<00:03:15.480> of<00:03:15.900> medical<00:03:16.800> work
the vast majority of medical work
the vast majority of medical work
doesn't<00:03:17.760> really<00:03:17.820> matter<00:03:17.970> in<00:03:18.329> the<00:03:18.420> north<00:03:18.570> to
doesn't really matter in the north to
doesn't really matter in the north to
south<00:03:18.959> to<00:03:19.200> East<00:03:19.380> the<00:03:19.620> West<00:03:19.970> clinical<00:03:20.970> studies
south to East the West clinical studies
south to East the West clinical studies
form<00:03:22.350> the<00:03:22.530> basis<00:03:22.860> of<00:03:22.950> how<00:03:23.100> we<00:03:23.160> investigate<00:03:23.820> so
form the basis of how we investigate so
form the basis of how we investigate so
if<00:03:24.540> we're<00:03:24.630> going<00:03:24.750> to<00:03:24.810> look<00:03:24.870> at<00:03:24.959> a<00:03:25.019> new<00:03:25.170> drug<00:03:25.470> all
if we're going to look at a new drug all
if we're going to look at a new drug all
right<00:03:26.220> we<00:03:26.370> tested<00:03:26.790> in<00:03:26.880> people<00:03:27.150> we<00:03:27.239> draw<00:03:27.420> blood
right we tested in people we draw blood
right we tested in people we draw blood
we<00:03:28.019> do<00:03:28.140> experiments<00:03:28.769> and<00:03:28.950> we<00:03:29.459> gain<00:03:29.670> consent
we do experiments and we gain consent
we do experiments and we gain consent
for<00:03:30.600> that<00:03:30.690> study<00:03:30.930> to<00:03:31.110> make<00:03:31.230> sure<00:03:31.380> that<00:03:31.500> we're
for that study to make sure that we're
for that study to make sure that we're
not<00:03:31.650> screwing<00:03:32.220> people<00:03:32.340> over<00:03:32.700> as<00:03:33.000> part<00:03:33.269> of<00:03:33.360> it
not screwing people over as part of it
not screwing people over as part of it
but<00:03:35.100> the<00:03:35.519> world<00:03:35.730> is<00:03:35.940> changing<00:03:35.970> around<00:03:36.540> the
but the world is changing around the
but the world is changing around the
clinical<00:03:37.320> study<00:03:37.590> which<00:03:37.860> has<00:03:38.010> been<00:03:38.220> fairly
clinical study which has been fairly
clinical study which has been fairly
well<00:03:38.880> established<00:03:38.910> for<00:03:39.630> tens<00:03:40.230> of<00:03:40.470> years<00:03:40.530> if
well established for tens of years if
well established for tens of years if
not<00:03:41.100> 50<00:03:41.940> to<00:03:42.090> 100<00:03:42.420> years<00:03:42.630> so<00:03:43.560> now<00:03:43.709> we<00:03:43.769> were<00:03:43.950> able
not 50 to 100 years so now we were able
not 50 to 100 years so now we were able
to<00:03:44.220> gather<00:03:44.370> data<00:03:44.640> about<00:03:44.790> our<00:03:45.120> genomes<00:03:45.540> but<00:03:46.049> as
to gather data about our genomes but as
to gather data about our genomes but as
we<00:03:46.350> saw<00:03:46.620> earlier<00:03:46.829> our<00:03:47.250> genomes<00:03:47.579> aren't
we saw earlier our genomes aren't
we saw earlier our genomes aren't
dispositive<00:03:48.360> we're<00:03:49.260> able<00:03:49.380> to<00:03:49.500> gather
dispositive we're able to gather
dispositive we're able to gather
information<00:03:49.980> about<00:03:50.310> our<00:03:50.489> environment<00:03:50.610> and
information about our environment and
information about our environment and
more<00:03:52.350> importantly<00:03:52.709> we're<00:03:52.829> able<00:03:52.920> to<00:03:53.040> gather
more importantly we're able to gather
more importantly we're able to gather
information<00:03:53.370> about<00:03:53.670> our<00:03:53.790> choices<00:03:54.090> because<00:03:54.600> it
information about our choices because it
information about our choices because it
turns<00:03:54.959> out<00:03:55.110> that<00:03:55.170> what<00:03:55.620> we<00:03:55.739> think<00:03:55.980> of<00:03:56.160> as<00:03:56.340> our
turns out that what we think of as our
turns out that what we think of as our
health<00:03:56.790> is<00:03:57.060> more<00:03:57.660> like<00:03:57.840> the<00:03:57.989> interaction<00:03:58.560> of
health is more like the interaction of
health is more like the interaction of
our<00:03:58.799> bodies<00:03:59.130> our<00:03:59.400> genomes<00:03:59.940> our<00:04:00.150> choices<00:04:00.630> and
our bodies our genomes our choices and
our bodies our genomes our choices and
our<00:04:01.590> environment<00:04:02.190> and<00:04:02.390> the<00:04:03.390> clinical<00:04:03.810> methods
our environment and the clinical methods
our environment and the clinical methods
that<00:04:04.290> we've<00:04:04.440> got<00:04:04.680> aren't<00:04:05.070> very<00:04:05.250> good<00:04:05.370> at
that we've got aren't very good at
that we've got aren't very good at
studying<00:04:06.030> that<00:04:06.239> because<00:04:06.720> they<00:04:06.870> are<00:04:07.200> based<00:04:07.590> on
studying that because they are based on
studying that because they are based on
the<00:04:07.920> idea<00:04:08.160> of<00:04:08.400> person-to-person<00:04:08.940> interaction
the idea of person-to-person interaction
the idea of person-to-person interaction
you<00:04:09.870> interact<00:04:10.170> with<00:04:10.200> your<00:04:10.380> doctor<00:04:10.709> and<00:04:10.739> you
you interact with your doctor and you
you interact with your doctor and you
get<00:04:11.010> enrolled<00:04:11.160> in<00:04:11.459> the<00:04:11.549> study<00:04:11.609> so<00:04:12.480> this<00:04:12.600> is<00:04:12.630> my
get enrolled in the study so this is my
get enrolled in the study so this is my
grandfather<00:04:13.560> actually<00:04:13.739> never<00:04:14.010> met<00:04:14.160> him<00:04:14.420> but
grandfather actually never met him but
grandfather actually never met him but
he's<00:04:15.540> holding<00:04:15.810> my<00:04:15.870> mom<00:04:16.109> and<00:04:16.410> his<00:04:16.979> genes<00:04:17.310> are<00:04:17.459> in
he's holding my mom and his genes are in
he's holding my mom and his genes are in
me<00:04:17.760> right<00:04:18.450> his<00:04:19.169> choices<00:04:19.590> ran<00:04:19.979> through<00:04:20.220> to<00:04:20.340> me
me right his choices ran through to me
me right his choices ran through to me
he<00:04:21.060> was<00:04:21.180> a<00:04:21.209> smoker<00:04:21.450> like<00:04:22.109> most<00:04:22.289> people<00:04:22.560> this<00:04:23.130> is
he was a smoker like most people this is
he was a smoker like most people this is
my<00:04:23.400> son<00:04:23.780> so<00:04:24.780> my<00:04:25.349> grandfather's<00:04:25.860> genes<00:04:26.039> go<00:04:26.250> all
my son so my grandfather's genes go all
my son so my grandfather's genes go all
the<00:04:26.550> way<00:04:26.580> through<00:04:26.820> to<00:04:26.849> him
the way through to him
the way through to him
and<00:04:27.479> my<00:04:28.139> choices<00:04:28.439> are<00:04:28.650> going<00:04:28.800> to<00:04:28.860> affect<00:04:28.919> his
and my choices are going to affect his
and my choices are going to affect his
health<00:04:29.930> the<00:04:30.930> technology<00:04:31.590> between<00:04:31.860> these<00:04:31.979> two
health the technology between these two
health the technology between these two
pictures<00:04:32.629> cannot<00:04:33.629> be<00:04:33.810> more<00:04:33.990> different<00:04:34.669> but
pictures cannot be more different but
pictures cannot be more different but
the<00:04:35.789> methodology<00:04:36.240> for<00:04:36.569> clinical<00:04:37.110> studies<00:04:37.530> has
the methodology for clinical studies has
the methodology for clinical studies has
not<00:04:38.819> radically<00:04:39.360> changed<00:04:39.719> over<00:04:39.870> that<00:04:39.990> time
not radically changed over that time
not radically changed over that time
period<00:04:40.259> we<00:04:40.590> just<00:04:40.830> have<00:04:40.979> better<00:04:41.129> statistics
period we just have better statistics
period we just have better statistics
the<00:04:43.500> way<00:04:43.740> we<00:04:43.919> gain<00:04:44.129> informed<00:04:44.580> consent<00:04:45.090> was
the way we gain informed consent was
the way we gain informed consent was
formed<00:04:46.319> in<00:04:46.409> large<00:04:46.620> part<00:04:46.949> after<00:04:47.159> World<00:04:47.520> War<00:04:47.610> Two
formed in large part after World War Two
formed in large part after World War Two
around<00:04:48.210> the<00:04:48.300> time<00:04:48.449> that<00:04:48.479> picture<00:04:48.870> was<00:04:48.930> taken
around the time that picture was taken
around the time that picture was taken
that<00:04:49.590> was<00:04:49.710> 70<00:04:50.159> years<00:04:50.400> ago<00:04:50.699> and<00:04:51.199> the<00:04:52.199> way<00:04:52.319> we
that was 70 years ago and the way we
that was 70 years ago and the way we
gain<00:04:52.590> informed<00:04:52.919> consent<00:04:53.250> this<00:04:53.400> tool<00:04:53.759> is
gain informed consent this tool is
gain informed consent this tool is
created<00:04:54.569> to<00:04:54.629> protect<00:04:54.780> us<00:04:55.110> from<00:04:55.259> harm<00:04:55.430> now
created to protect us from harm now
created to protect us from harm now
creates<00:04:57.060> silos<00:04:57.840> so<00:04:58.680> the<00:04:58.800> data<00:04:59.009> that<00:04:59.219> we
creates silos so the data that we
creates silos so the data that we
collect<00:04:59.699> for<00:05:00.060> prostate<00:05:00.479> cancer<00:05:00.509> or<00:05:00.990> for
collect for prostate cancer or for
collect for prostate cancer or for
Alzheimer's<00:05:01.710> trials<00:05:02.129> goes<00:05:02.939> into<00:05:03.270> silos<00:05:03.689> where
Alzheimer's trials goes into silos where
Alzheimer's trials goes into silos where
it<00:05:03.960> can<00:05:04.050> only<00:05:04.169> be<00:05:04.439> used<00:05:04.710> for<00:05:05.159> prostate<00:05:05.729> cancer
it can only be used for prostate cancer
it can only be used for prostate cancer
or<00:05:06.270> for<00:05:06.569> Alzheimer's<00:05:07.080> research<00:05:07.639> right<00:05:08.639> it
or for Alzheimer's research right it
or for Alzheimer's research right it
can't<00:05:09.060> be<00:05:09.180> networked<00:05:09.599> it<00:05:10.110> can't<00:05:10.409> be
can't be networked it can't be
can't be networked it can't be
integrated<00:05:11.189> it<00:05:11.370> cannot<00:05:11.909> be<00:05:11.969> used<00:05:12.449> by<00:05:12.960> people
integrated it cannot be used by people
integrated it cannot be used by people
who<00:05:13.349> aren't<00:05:13.590> credentialed<00:05:14.250> so<00:05:14.909> a<00:05:14.939> physicist
who aren't credentialed so a physicist
who aren't credentialed so a physicist
can't<00:05:15.750> get<00:05:15.870> access<00:05:15.990> to<00:05:16.319> without<00:05:16.529> filing
can't get access to without filing
can't get access to without filing
paperwork<00:05:17.189> a<00:05:17.550> computer<00:05:18.210> scientist<00:05:18.779> can't<00:05:18.990> get
paperwork a computer scientist can't get
paperwork a computer scientist can't get
access<00:05:19.229> to<00:05:19.529> about<00:05:19.770> filing<00:05:19.979> paperwork
access to about filing paperwork
access to about filing paperwork
computer<00:05:21.360> scientists<00:05:21.689> aren't<00:05:21.870> patient<00:05:22.310> they
computer scientists aren't patient they
computer scientists aren't patient they
don't<00:05:23.490> file<00:05:23.639> paperwork<00:05:25.370> this<00:05:26.370> is<00:05:26.490> an<00:05:26.580> accident
don't file paperwork this is an accident
don't file paperwork this is an accident
these<00:05:28.080> are<00:05:28.229> tools<00:05:28.529> that<00:05:28.740> we<00:05:28.889> created<00:05:29.279> to
these are tools that we created to
these are tools that we created to
protect<00:05:29.580> us<00:05:30.000> from<00:05:30.419> harm<00:05:30.680> what<00:05:31.680> they're<00:05:31.830> doing
protect us from harm what they're doing
protect us from harm what they're doing
is<00:05:32.219> protecting<00:05:32.610> us<00:05:32.879> from<00:05:32.909> innovation<00:05:33.360> now<00:05:33.690> and
is protecting us from innovation now and
is protecting us from innovation now and
that<00:05:34.949> wasn't<00:05:35.159> the<00:05:35.370> goal<00:05:35.729> it<00:05:36.060> wasn't<00:05:36.360> the<00:05:36.539> point
that wasn't the goal it wasn't the point
that wasn't the goal it wasn't the point
right<00:05:37.710> it's<00:05:37.979> a<00:05:38.129> side<00:05:38.639> effect<00:05:38.669> if<00:05:39.300> you<00:05:39.330> will<00:05:39.629> of
right it's a side effect if you will of
right it's a side effect if you will of
a<00:05:39.990> power<00:05:40.259> recreated<00:05:40.860> to<00:05:41.610> take<00:05:41.819> us<00:05:41.940> for<00:05:42.150> good
a power recreated to take us for good
a power recreated to take us for good
and<00:05:42.949> so<00:05:43.949> if<00:05:44.039> you<00:05:44.129> think<00:05:44.370> about<00:05:44.430> it<00:05:44.610> the
and so if you think about it the
and so if you think about it the
depressing<00:05:45.719> thing<00:05:45.960> is<00:05:46.080> that<00:05:46.229> Facebook<00:05:46.800> would
depressing thing is that Facebook would
depressing thing is that Facebook would
never<00:05:47.490> make<00:05:47.639> a<00:05:47.699> change<00:05:48.029> to<00:05:48.240> something<00:05:48.389> as
never make a change to something as
never make a change to something as
important<00:05:49.110> as<00:05:49.229> an<00:05:49.379> advertising<00:05:49.919> algorithm
important as an advertising algorithm
important as an advertising algorithm
with<00:05:51.210> a<00:05:51.240> sample<00:05:51.629> size<00:05:51.930> as<00:05:52.229> small<00:05:52.620> as<00:05:52.979> a<00:05:53.039> phase<00:05:53.669> 3
with a sample size as small as a phase 3
with a sample size as small as a phase 3
clinical<00:05:54.120> trial<00:05:55.819> we<00:05:56.819> cannot<00:05:57.240> take<00:05:57.509> the
clinical trial we cannot take the
clinical trial we cannot take the
information<00:05:57.810> from<00:05:58.229> past<00:05:58.650> trials<00:05:59.129> and<00:05:59.279> put
information from past trials and put
information from past trials and put
them<00:05:59.520> together<00:05:59.639> to<00:06:00.029> form<00:06:00.150> statistically
them together to form statistically
them together to form statistically
significant<00:06:01.560> samples<00:06:02.129> and<00:06:02.569> that<00:06:03.569> sucks<00:06:04.139> right
significant samples and that sucks right
significant samples and that sucks right
so<00:06:04.889> forty-five<00:06:05.759> percent<00:06:05.849> of<00:06:06.120> men<00:06:06.270> developed
so forty-five percent of men developed
so forty-five percent of men developed
cancer<00:06:07.250> thirty-eight<00:06:08.250> percent<00:06:08.370> of<00:06:08.639> women
cancer thirty-eight percent of women
cancer thirty-eight percent of women
develop<00:06:09.029> cancer<00:06:09.389> one<00:06:09.750> in<00:06:09.870> four<00:06:10.080> men<00:06:10.110> dies<00:06:10.529> of
develop cancer one in four men dies of
develop cancer one in four men dies of
cancer<00:06:11.270> one<00:06:12.270> in<00:06:12.360> five<00:06:12.599> women<00:06:12.629> dies<00:06:13.169> of<00:06:13.379> cancer
cancer one in five women dies of cancer
cancer one in five women dies of cancer
at<00:06:13.770> least<00:06:13.919> in<00:06:14.039> the<00:06:14.099> United<00:06:14.219> States<00:06:14.669> and<00:06:15.080> three
at least in the United States and three
at least in the United States and three
out<00:06:16.169> of<00:06:16.199> the<00:06:16.319> four<00:06:16.529> drugs<00:06:16.889> we<00:06:17.069> give<00:06:17.339> you<00:06:17.550> if<00:06:17.759> you
out of the four drugs we give you if you
out of the four drugs we give you if you
get<00:06:18.089> cancer<00:06:18.479> fail<00:06:19.199> and<00:06:19.770> this<00:06:20.669> is<00:06:20.789> personal<00:06:21.150> to
get cancer fail and this is personal to
get cancer fail and this is personal to
me<00:06:21.389> my<00:06:21.599> sister<00:06:22.020> is<00:06:22.139> a<00:06:22.169> cancer<00:06:22.439> survivor<00:06:22.680> my
me my sister is a cancer survivor my
me my sister is a cancer survivor my
mother-in-law<00:06:23.819> is<00:06:24.029> a<00:06:24.089> cancer<00:06:24.360> survivor
mother-in-law is a cancer survivor
mother-in-law is a cancer survivor
cancer<00:06:25.620> sucks<00:06:26.509> and<00:06:27.509> when<00:06:27.659> you<00:06:27.750> have<00:06:27.779> it<00:06:28.080> you
cancer sucks and when you have it you
cancer sucks and when you have it you
don't<00:06:28.199> have<00:06:28.500> a<00:06:28.529> lot<00:06:28.710> of<00:06:28.740> privacy<00:06:29.189> in<00:06:29.219> the
don't have a lot of privacy in the
don't have a lot of privacy in the
hospital<00:06:29.759> you're<00:06:29.849> naked<00:06:30.060> the<00:06:30.659> vast<00:06:30.839> majority
hospital you're naked the vast majority
hospital you're naked the vast majority
of<00:06:31.439> the<00:06:31.620> time<00:06:31.830> people<00:06:32.759> you<00:06:33.029> don't<00:06:33.300> know<00:06:33.419> come
of the time people you don't know come
of the time people you don't know come
in<00:06:34.020> and<00:06:34.169> look<00:06:34.289> at<00:06:34.469> you<00:06:34.620> and<00:06:34.770> poke<00:06:34.979> you<00:06:35.129> and<00:06:35.189> prod
in and look at you and poke you and prod
in and look at you and poke you and prod
you<00:06:35.880> and<00:06:36.029> when<00:06:36.839> I<00:06:36.870> tell<00:06:37.229> cancer<00:06:37.709> survivors
you and when I tell cancer survivors
you and when I tell cancer survivors
that<00:06:38.459> this<00:06:39.029> tool<00:06:39.240> we<00:06:39.360> created<00:06:39.630> to<00:06:39.690> protect
that this tool we created to protect
that this tool we created to protect
them<00:06:40.199> is<00:06:40.319> a
them is a
them is a
preventing<00:06:41.290> their<00:06:41.410> data<00:06:41.590> from<00:06:41.800> being<00:06:42.010> used
preventing their data from being used
preventing their data from being used
especially<00:06:43.390> when<00:06:43.720> only<00:06:43.870> three<00:06:44.110> to<00:06:44.200> four
especially when only three to four
especially when only three to four
percent<00:06:44.530> of<00:06:44.800> people<00:06:44.920> who<00:06:45.160> have<00:06:45.190> cancer<00:06:45.490> ever
percent of people who have cancer ever
percent of people who have cancer ever
even<00:06:46.000> sign<00:06:46.240> up<00:06:46.270> for<00:06:46.570> a<00:06:46.600> clinical<00:06:46.990> study<00:06:47.170> their
even sign up for a clinical study their
even sign up for a clinical study their
reaction<00:06:48.370> is<00:06:48.430> not<00:06:48.580> thank<00:06:48.880> you<00:06:49.000> God<00:06:49.240> for
reaction is not thank you God for
reaction is not thank you God for
protecting<00:06:49.930> my<00:06:50.020> privacy<00:06:50.940> it's<00:06:51.940> out<00:06:52.150> range<00:06:53.280> we
protecting my privacy it's out range we
protecting my privacy it's out range we
have<00:06:54.460> this<00:06:54.640> information<00:06:54.910> that<00:06:55.210> we<00:06:55.360> can't<00:06:55.600> use
have this information that we can't use
have this information that we can't use
it<00:06:55.960> and<00:06:56.110> it's<00:06:56.230> an<00:06:56.290> accident<00:06:57.570> so<00:06:58.570> the<00:06:58.660> cost<00:06:58.930> and
it and it's an accident so the cost and
it and it's an accident so the cost and
blood<00:06:59.590> and<00:06:59.830> treasure<00:07:00.040> of<00:07:00.280> this<00:07:00.430> is<00:07:00.580> enormous
blood and treasure of this is enormous
blood and treasure of this is enormous
226<00:07:02.590> billion<00:07:03.010> a<00:07:03.100> year<00:07:03.130> is<00:07:03.430> spent<00:07:03.550> on<00:07:03.790> cancer<00:07:04.180> in
226 billion a year is spent on cancer in
226 billion a year is spent on cancer in
the<00:07:04.360> United<00:07:04.630> States<00:07:04.740> 1,500<00:07:05.740> people<00:07:05.860> a<00:07:06.010> day<00:07:06.220> die
the United States 1,500 people a day die
the United States 1,500 people a day die
in<00:07:06.910> the<00:07:07.420> United<00:07:07.750> States<00:07:07.780> and<00:07:08.350> it's<00:07:09.100> getting
in the United States and it's getting
in the United States and it's getting
worse<00:07:10.530> so<00:07:11.530> the<00:07:11.830> good<00:07:11.950> news<00:07:12.010> is<00:07:12.190> that<00:07:12.730> some
worse so the good news is that some
worse so the good news is that some
things<00:07:13.420> have<00:07:13.480> changed<00:07:14.020> and<00:07:14.110> the<00:07:14.230> most
things have changed and the most
things have changed and the most
important<00:07:14.830> thing<00:07:14.950> that's<00:07:15.100> changed<00:07:15.550> is<00:07:15.670> that
important thing that's changed is that
important thing that's changed is that
we<00:07:16.120> can<00:07:16.330> now<00:07:16.450> measure<00:07:16.660> ourselves<00:07:16.960> in<00:07:17.530> ways
we can now measure ourselves in ways
we can now measure ourselves in ways
that<00:07:18.040> used<00:07:18.490> to<00:07:18.670> be<00:07:18.850> the<00:07:19.210> Dominion<00:07:19.600> of<00:07:19.720> the
that used to be the Dominion of the
that used to be the Dominion of the
health<00:07:20.050> system<00:07:20.260> so<00:07:21.100> a<00:07:21.130> lot<00:07:21.280> of<00:07:21.310> people<00:07:21.550> talk
health system so a lot of people talk
health system so a lot of people talk
about<00:07:21.730> it<00:07:22.090> is<00:07:22.210> digital<00:07:22.570> exhaust<00:07:22.900> I<00:07:23.140> like<00:07:23.290> to
about it is digital exhaust I like to
about it is digital exhaust I like to
think<00:07:23.500> of<00:07:23.620> it<00:07:23.680> as<00:07:23.800> the<00:07:23.830> dust<00:07:24.100> that<00:07:24.400> runs<00:07:24.550> along
think of it as the dust that runs along
think of it as the dust that runs along
behind<00:07:24.970> my<00:07:25.210> kid<00:07:25.450> we<00:07:26.380> can<00:07:26.500> reach<00:07:26.620> back<00:07:26.830> and<00:07:26.860> grab
behind my kid we can reach back and grab
behind my kid we can reach back and grab
that<00:07:27.250> dust<00:07:27.820> and<00:07:28.480> we<00:07:28.570> can<00:07:28.690> learn<00:07:28.840> a<00:07:28.900> lot<00:07:29.110> about
that dust and we can learn a lot about
that dust and we can learn a lot about
health<00:07:29.530> from<00:07:29.740> it<00:07:29.860> so<00:07:30.010> if<00:07:30.430> our<00:07:30.580> choices<00:07:30.940> are
health from it so if our choices are
health from it so if our choices are
part<00:07:31.420> of<00:07:31.450> our<00:07:31.540> health<00:07:31.780> what<00:07:32.560> we<00:07:32.680> eat<00:07:32.920> is<00:07:32.950> a
part of our health what we eat is a
part of our health what we eat is a
really<00:07:33.520> important<00:07:34.000> aspect<00:07:34.480> of<00:07:34.570> our<00:07:34.720> health<00:07:34.900> so
really important aspect of our health so
really important aspect of our health so
you<00:07:35.560> can<00:07:35.680> do<00:07:35.740> something<00:07:35.980> very<00:07:36.160> simple<00:07:36.490> and
you can do something very simple and
you can do something very simple and
basic<00:07:36.820> and<00:07:37.150> take<00:07:37.270> a<00:07:37.300> picture<00:07:37.510> of<00:07:37.690> your<00:07:37.780> food
basic and take a picture of your food
basic and take a picture of your food
and<00:07:38.260> enough<00:07:38.500> people<00:07:38.860> do<00:07:39.100> that<00:07:39.310> we<00:07:40.150> can<00:07:40.300> learn<00:07:40.420> a
and enough people do that we can learn a
and enough people do that we can learn a
lot<00:07:40.600> about<00:07:40.750> how<00:07:41.260> our<00:07:41.290> food<00:07:41.560> affects<00:07:41.800> our
lot about how our food affects our
lot about how our food affects our
health<00:07:42.120> one<00:07:43.120> interesting<00:07:43.420> thing<00:07:43.630> that<00:07:43.780> came
health one interesting thing that came
health one interesting thing that came
out<00:07:44.110> of<00:07:44.170> this<00:07:44.320> this<00:07:44.560> is<00:07:44.680> an<00:07:44.800> app<00:07:44.980> for<00:07:45.790> iPhones
out of this this is an app for iPhones
out of this this is an app for iPhones
called<00:07:46.630> the<00:07:46.720> eatery<00:07:47.020> is<00:07:47.260> that<00:07:47.800> we<00:07:47.950> think<00:07:48.190> our
called the eatery is that we think our
called the eatery is that we think our
pizza<00:07:48.610> is<00:07:48.820> significantly<00:07:49.390> healthier<00:07:49.810> than
pizza is significantly healthier than
pizza is significantly healthier than
other<00:07:50.170> people's<00:07:50.500> pizza<00:07:50.800> is<00:07:50.950> I
other people's pizza is I
other people's pizza is I
and<00:07:53.629> it<00:07:53.899> seems<00:07:54.169> like<00:07:54.289> a<00:07:54.409> trivial<00:07:54.740> result<00:07:55.580> but
and it seems like a trivial result but
and it seems like a trivial result but
this<00:07:55.999> is<00:07:56.119> the<00:07:56.179> sort<00:07:56.360> of<00:07:56.449> research<00:07:56.749> that<00:07:56.809> used
this is the sort of research that used
this is the sort of research that used
to<00:07:57.169> take<00:07:57.199> the<00:07:57.439> health<00:07:57.619> system<00:07:58.059> years<00:07:59.059> and
to take the health system years and
to take the health system years and
hundreds<00:07:59.990> of<00:08:00.050> thousands<00:08:00.439> of<00:08:00.499> dollars<00:08:00.770> to
hundreds of thousands of dollars to
hundreds of thousands of dollars to
accomplish<00:08:01.309> it<00:08:01.429> was<00:08:01.520> done<00:08:01.669> in<00:08:01.789> five<00:08:02.029> months<00:08:02.300> by
accomplish it was done in five months by
accomplish it was done in five months by
a<00:08:02.929> startup<00:08:03.259> company<00:08:03.379> of<00:08:03.649> a<00:08:03.679> couple<00:08:03.949> of<00:08:04.009> people
a startup company of a couple of people
a startup company of a couple of people
I<00:08:04.459> don't<00:08:05.089> have<00:08:05.389> any<00:08:05.569> financial<00:08:06.020> interest<00:08:06.529> in
I don't have any financial interest in
I don't have any financial interest in
it<00:08:06.909> but<00:08:07.909> more<00:08:08.149> non<00:08:08.509> trivially<00:08:09.050> we<00:08:09.229> can<00:08:09.349> get<00:08:09.439> our
it but more non trivially we can get our
it but more non trivially we can get our
genotypes<00:08:09.949> done<00:08:10.159> and<00:08:10.309> although<00:08:10.490> our
genotypes done and although our
genotypes done and although our
genotypes<00:08:11.029> aren't<00:08:11.270> this<00:08:11.389> positive<00:08:11.929> they<00:08:12.050> give
genotypes aren't this positive they give
genotypes aren't this positive they give
us<00:08:12.319> clues<00:08:12.619> so<00:08:13.369> I<00:08:13.429> could<00:08:13.580> show<00:08:13.610> you<00:08:13.789> mine<00:08:14.149> it's
us clues so I could show you mine it's
us clues so I could show you mine it's
just<00:08:14.569> a<00:08:14.959> st<00:08:15.259> CS<00:08:15.559> and<00:08:15.709> G's<00:08:15.889> this<00:08:16.339> is<00:08:16.490> the
just a st CS and G's this is the
just a st CS and G's this is the
interpretation<00:08:16.819> of<00:08:17.330> it<00:08:17.449> as<00:08:17.539> you<00:08:17.599> can<00:08:17.749> see<00:08:17.990> i
interpretation of it as you can see i
interpretation of it as you can see i
carry<00:08:18.860> a<00:08:18.919> thirty-two<00:08:19.309> percent<00:08:19.429> risk<00:08:19.759> of
carry a thirty-two percent risk of
carry a thirty-two percent risk of
prostate<00:08:20.089> cancer<00:08:20.439> twenty-two<00:08:21.439> percent<00:08:21.559> risk
prostate cancer twenty-two percent risk
prostate cancer twenty-two percent risk
of<00:08:21.979> psoriasis<00:08:22.580> of<00:08:22.729> a<00:08:22.789> 14-percent<00:08:23.419> risk<00:08:23.809> of
of psoriasis of a 14-percent risk of
of psoriasis of a 14-percent risk of
Alzheimer's<00:08:24.439> disease<00:08:24.759> so<00:08:25.759> that<00:08:25.909> means<00:08:26.119> if
Alzheimer's disease so that means if
Alzheimer's disease so that means if
you're<00:08:26.479> a<00:08:26.509> geneticist<00:08:26.839> you're<00:08:27.110> freaking<00:08:27.469> out
you're a geneticist you're freaking out
you're a geneticist you're freaking out
going<00:08:27.740> oh<00:08:27.860> my<00:08:27.979> god<00:08:28.159> you're<00:08:28.309> told<00:08:28.550> every<00:08:28.789> when
going oh my god you're told every when
going oh my god you're told every when
you<00:08:28.939> carry<00:08:29.149> the<00:08:29.269> apoe4<00:08:29.509> allele<00:08:30.110> what's<00:08:30.349> wrong
you carry the apoe4 allele what's wrong
you carry the apoe4 allele what's wrong
with<00:08:30.830> you<00:08:31.509> all<00:08:32.509> right<00:08:32.599> when<00:08:32.779> i<00:08:32.810> got<00:08:32.899> these
with you all right when i got these
with you all right when i got these
results<00:08:34.159> i<00:08:34.219> started<00:08:34.490> talking<00:08:34.849> to<00:08:34.940> doctors<00:08:35.300> and
results i started talking to doctors and
results i started talking to doctors and
they<00:08:35.870> told<00:08:36.139> me<00:08:36.229> not<00:08:36.380> to<00:08:36.529> tell<00:08:36.740> anyone<00:08:36.979> of<00:08:37.190> my
they told me not to tell anyone of my
they told me not to tell anyone of my
reaction<00:08:37.610> is<00:08:37.699> is<00:08:37.819> that<00:08:37.969> going<00:08:38.120> to<00:08:38.209> help<00:08:38.269> anyone
reaction is is that going to help anyone
reaction is is that going to help anyone
cure<00:08:39.289> me<00:08:39.440> when<00:08:39.800> i<00:08:39.829> get<00:08:39.919> the<00:08:40.130> disease<00:08:40.399> and<00:08:41.139> no
cure me when i get the disease and no
cure me when i get the disease and no
one<00:08:42.289> could<00:08:42.440> tell<00:08:42.589> me<00:08:42.740> yes<00:08:43.509> and<00:08:44.509> i<00:08:44.660> live<00:08:44.839> in<00:08:44.870> a
one could tell me yes and i live in a
one could tell me yes and i live in a
web<00:08:45.199> world<00:08:45.470> where<00:08:45.769> when<00:08:46.130> you<00:08:46.160> share<00:08:46.459> things
web world where when you share things
web world where when you share things
beautiful<00:08:47.329> stuff<00:08:47.600> happens<00:08:48.019> not<00:08:48.470> bad<00:08:48.709> stuff<00:08:49.100> so
beautiful stuff happens not bad stuff so
beautiful stuff happens not bad stuff so
I<00:08:49.850> started<00:08:50.060> putting<00:08:50.209> this<00:08:50.389> in<00:08:50.540> my<00:08:50.630> slide<00:08:50.870> decks
I started putting this in my slide decks
I started putting this in my slide decks
and<00:08:51.410> I<00:08:51.800> got<00:08:51.949> even<00:08:52.130> more<00:08:52.310> obnoxious<00:08:52.639> I<00:08:53.120> went<00:08:53.269> to
and I got even more obnoxious I went to
and I got even more obnoxious I went to
my<00:08:53.389> doctor<00:08:53.720> I<00:08:53.779> so<00:08:53.899> I<00:08:53.930> like<00:08:54.110> tech<00:08:54.230> she<00:08:54.350> gave<00:08:54.470> my
my doctor I so I like tech she gave my
my doctor I so I like tech she gave my
blood<00:08:54.889> work<00:08:55.180> please<00:08:56.180> give<00:08:56.449> me<00:08:56.600> back<00:08:56.810> my<00:08:57.019> data
blood work please give me back my data
blood work please give me back my data
so<00:08:57.470> this<00:08:57.589> is<00:08:57.680> my<00:08:57.769> most<00:08:57.920> recent<00:08:58.069> bloodwork<00:08:58.459> as
so this is my most recent bloodwork as
so this is my most recent bloodwork as
you<00:08:59.329> can<00:08:59.420> see<00:08:59.600> I<00:08:59.630> have<00:08:59.689> high<00:08:59.930> cholesterol<00:08:59.990> I
you can see I have high cholesterol I
you can see I have high cholesterol I
have<00:09:01.310> particularly<00:09:01.759> high<00:09:01.910> bad<00:09:02.149> cholesterol
have particularly high bad cholesterol
have particularly high bad cholesterol
and<00:09:03.170> I<00:09:03.470> have<00:09:03.620> some<00:09:03.800> bad<00:09:03.920> liver<00:09:04.189> numbers<00:09:04.550> but
and I have some bad liver numbers but
and I have some bad liver numbers but
those<00:09:04.790> are<00:09:04.910> because<00:09:05.089> we<00:09:05.120> had<00:09:05.240> a<00:09:05.269> dinner<00:09:05.449> party
those are because we had a dinner party
those are because we had a dinner party
with<00:09:06.019> a<00:09:06.050> lot<00:09:06.230> of<00:09:06.319> good<00:09:06.350> wine<00:09:06.649> the<00:09:07.279> night<00:09:07.430> before
with a lot of good wine the night before
with a lot of good wine the night before
we<00:09:07.819> ran<00:09:07.970> the<00:09:08.120> test<00:09:09.759> all<00:09:10.759> right<00:09:10.850> but<00:09:11.000> look<00:09:11.120> at
we ran the test all right but look at
we ran the test all right but look at
how<00:09:11.329> non<00:09:11.600> computable<00:09:12.350> this<00:09:12.529> information<00:09:13.160> is
how non computable this information is
how non computable this information is
this<00:09:13.939> is<00:09:14.120> like<00:09:14.269> the<00:09:14.449> photograph<00:09:15.319> of<00:09:15.589> my
this is like the photograph of my
this is like the photograph of my
granddad<00:09:16.220> holding<00:09:16.579> my<00:09:16.730> mom<00:09:16.990> from<00:09:17.990> a<00:09:18.139> data
granddad holding my mom from a data
granddad holding my mom from a data
perspective<00:09:18.410> and<00:09:19.160> I<00:09:19.730> had<00:09:19.880> to<00:09:19.970> go<00:09:20.089> into<00:09:20.240> the
perspective and I had to go into the
perspective and I had to go into the
system<00:09:20.720> and<00:09:20.779> get<00:09:20.959> it<00:09:21.079> out<00:09:22.089> so<00:09:23.089> the<00:09:23.240> thing<00:09:23.779> that
system and get it out so the thing that
system and get it out so the thing that
I'm<00:09:24.079> proposing<00:09:24.740> we<00:09:24.920> do<00:09:25.160> here<00:09:25.639> is<00:09:25.790> that<00:09:26.089> we
I'm proposing we do here is that we
I'm proposing we do here is that we
reach<00:09:26.420> behind<00:09:26.630> us<00:09:26.990> and<00:09:27.139> we<00:09:27.230> grab<00:09:27.439> the<00:09:27.649> dust
reach behind us and we grab the dust
reach behind us and we grab the dust
they<00:09:28.819> reach<00:09:29.029> into<00:09:29.240> our<00:09:29.329> bodies<00:09:29.689> and<00:09:29.720> we<00:09:29.959> grab
they reach into our bodies and we grab
they reach into our bodies and we grab
the<00:09:30.319> genotype<00:09:30.829> and<00:09:31.009> the<00:09:31.610> reach<00:09:31.759> into<00:09:31.970> the
the genotype and the reach into the
the genotype and the reach into the
medical<00:09:32.389> system<00:09:32.540> when<00:09:32.810> we<00:09:32.899> grab<00:09:33.079> our<00:09:33.199> records
medical system when we grab our records
medical system when we grab our records
and<00:09:33.889> we<00:09:34.399> use<00:09:34.639> it<00:09:34.819> to<00:09:35.000> build<00:09:35.180> something
and we use it to build something
and we use it to build something
together<00:09:36.019> which<00:09:36.500> is<00:09:36.620> a<00:09:36.649> comment<00:09:37.130> and<00:09:37.370> it's
together which is a comment and it's
together which is a comment and it's
been<00:09:38.209> a<00:09:38.240> lot<00:09:38.420> of<00:09:38.449> talk<00:09:38.720> about<00:09:38.750> Commons<00:09:39.680> is
been a lot of talk about Commons is
been a lot of talk about Commons is
right<00:09:40.459> here<00:09:40.910> there<00:09:41.209> everywhere<00:09:41.449> right<00:09:42.350> a
right here there everywhere right a
right here there everywhere right a
Commons<00:09:43.100> is<00:09:43.220> nothing<00:09:43.519> more<00:09:43.699> than<00:09:43.910> a<00:09:43.970> public
Commons is nothing more than a public
Commons is nothing more than a public
good<00:09:44.540> that<00:09:44.600> we<00:09:44.839> build<00:09:45.079> out<00:09:45.199> of<00:09:45.230> private<00:09:45.740> goods
good that we build out of private goods
good that we build out of private goods
we<00:09:46.910> do<00:09:47.029> it<00:09:47.149> voluntarily<00:09:47.470> we<00:09:48.470> do<00:09:48.560> it<00:09:48.649> through
we do it voluntarily we do it through
we do it voluntarily we do it through
standardized<00:09:49.250> legal<00:09:49.610> tools<00:09:49.850> we<00:09:50.089> do<00:09:50.240> it
standardized legal tools we do it
standardized legal tools we do it
through<00:09:50.389> standardized<00:09:50.810> technologies<00:09:51.910> that's
through standardized technologies that's
through standardized technologies that's
all<00:09:53.269> the<00:09:53.600> commons<00:09:54.019> is<00:09:54.199> it's<00:09:54.680> something<00:09:55.009> that
all the commons is it's something that
all the commons is it's something that
we<00:09:55.279> build<00:09:55.550> together<00:09:55.790> because<00:09:56.329> we<00:09:56.449> think<00:09:56.569> it's
we build together because we think it's
we build together because we think it's
important<00:09:57.199> and<00:09:57.319> a<00:09:58.160> commons<00:09:58.579> of<00:09:58.670> data<00:09:59.000> is
important and a commons of data is
important and a commons of data is
something<00:09:59.600> that's<00:09:59.689> really<00:09:59.899> unique<00:10:00.079> because
something that's really unique because
something that's really unique because
we<00:10:00.949> make<00:10:01.100> it<00:10:01.220> from<00:10:01.370> our<00:10:01.490> own<00:10:01.639> data<00:10:01.970> and
we make it from our own data and
we make it from our own data and
although<00:10:03.319> a<00:10:03.350> lot<00:10:03.500> of<00:10:03.559> people<00:10:03.740> like<00:10:03.949> privacy<00:10:04.430> is
although a lot of people like privacy is
although a lot of people like privacy is
their<00:10:04.790> methodology<00:10:05.300> of<00:10:05.360> control<00:10:05.750> around<00:10:06.050> data
their methodology of control around data
their methodology of control around data
sess<00:10:06.740> around<00:10:07.009> privacy<00:10:07.189> at<00:10:07.610> least<00:10:07.850> some<00:10:08.240> of<00:10:08.269> us
sess around privacy at least some of us
sess around privacy at least some of us
really<00:10:08.810> like<00:10:08.959> to<00:10:09.110> share<00:10:09.379> as<00:10:09.499> a<00:10:09.560> form<00:10:09.800> of
really like to share as a form of
really like to share as a form of
control<00:10:10.069> and<00:10:11.060> what's<00:10:11.149> remarkable<00:10:11.329> about
control and what's remarkable about
control and what's remarkable about
digital<00:10:12.290> Commons<00:10:12.740> is<00:10:12.889> if<00:10:13.069> you<00:10:13.459> don't<00:10:13.490> need<00:10:13.790> a
digital Commons is if you don't need a
digital Commons is if you don't need a
big<00:10:14.060> percentage<00:10:14.420> if<00:10:15.290> your<00:10:15.560> sample<00:10:15.740> size<00:10:16.040> is
big percentage if your sample size is
big percentage if your sample size is
big<00:10:16.370> enough<00:10:16.399> to<00:10:17.060> generate<00:10:17.180> something<00:10:17.569> massive
big enough to generate something massive
big enough to generate something massive
and<00:10:18.199> beautiful<00:10:18.589> so<00:10:19.430> not<00:10:19.610> that<00:10:19.639> many
and beautiful so not that many
and beautiful so not that many
programmers<00:10:20.480> write<00:10:20.660> free<00:10:21.079> software<00:10:21.589> but<00:10:22.370> we
programmers write free software but we
programmers write free software but we
have<00:10:22.610> the<00:10:22.759> Apache<00:10:23.029> web<00:10:23.329> server<00:10:24.009> not<00:10:25.009> that<00:10:25.189> many
have the Apache web server not that many
have the Apache web server not that many
people<00:10:25.459> who<00:10:25.879> read<00:10:26.059> Wikipedia<00:10:26.600> edit<00:10:26.959> but<00:10:27.649> it
people who read Wikipedia edit but it
people who read Wikipedia edit but it
works<00:10:28.509> so<00:10:29.509> as<00:10:29.629> long<00:10:29.809> as<00:10:29.870> some<00:10:30.230> people<00:10:30.529> like<00:10:30.680> to
works so as long as some people like to
works so as long as some people like to
share<00:10:31.100> as<00:10:31.220> their<00:10:31.370> form<00:10:31.550> of<00:10:31.639> control<00:10:31.939> we<00:10:32.059> can
share as their form of control we can
share as their form of control we can
build<00:10:32.300> a<00:10:32.449> Commons<00:10:32.839> as<00:10:33.079> long<00:10:33.259> as<00:10:33.379> we<00:10:33.439> can<00:10:33.529> get
build a Commons as long as we can get
build a Commons as long as we can get
the<00:10:33.769> information<00:10:33.800> out<00:10:34.339> and<00:10:34.639> in<00:10:35.509> biology<00:10:35.809> the
the information out and in biology the
the information out and in biology the
numbers<00:10:36.410> are<00:10:36.529> even<00:10:36.620> better<00:10:36.829> so<00:10:37.160> Vanderbilt
numbers are even better so Vanderbilt
numbers are even better so Vanderbilt
ran<00:10:37.790> a<00:10:37.819> study<00:10:38.029> asking<00:10:38.420> people<00:10:38.689> we'd<00:10:39.350> like<00:10:39.529> to
ran a study asking people we'd like to
ran a study asking people we'd like to
take<00:10:39.829> your<00:10:40.069> bio<00:10:40.370> samples<00:10:40.670> your<00:10:40.970> blood<00:10:41.240> and
take your bio samples your blood and
take your bio samples your blood and
share<00:10:41.959> them<00:10:42.199> in<00:10:42.259> a<00:10:42.350> bio<00:10:42.499> bank<00:10:42.800> and<00:10:42.949> only<00:10:43.129> five
share them in a bio bank and only five
share them in a bio bank and only five
percent<00:10:43.610> of<00:10:43.879> the<00:10:43.939> people<00:10:44.059> opted<00:10:44.509> out<00:10:44.569> I'm<00:10:45.470> from
percent of the people opted out I'm from
percent of the people opted out I'm from
Tennessee<00:10:45.949> it's<00:10:46.519> not<00:10:46.759> the<00:10:47.089> most<00:10:47.240> science
Tennessee it's not the most science
Tennessee it's not the most science
positive<00:10:48.290> state<00:10:48.559> in<00:10:48.769> the<00:10:49.040> United<00:10:49.339> States<00:10:49.490> of
positive state in the United States of
positive state in the United States of
America<00:10:50.410> but<00:10:51.410> only<00:10:51.620> five<00:10:51.800> percent<00:10:52.009> of<00:10:52.249> people
America but only five percent of people
America but only five percent of people
wanted<00:10:52.730> out<00:10:52.850> so<00:10:53.089> people<00:10:54.050> like<00:10:54.499> to<00:10:54.800> share<00:10:55.100> if
wanted out so people like to share if
wanted out so people like to share if
you<00:10:55.879> give<00:10:56.120> them<00:10:56.149> the<00:10:56.300> opportunity<00:10:56.660> and<00:10:57.110> the
you give them the opportunity and the
you give them the opportunity and the
choice<00:10:57.410> and<00:10:57.879> the<00:10:58.879> reason<00:10:59.329> that<00:10:59.360> I<00:10:59.720> got
choice and the reason that I got
choice and the reason that I got
obsessed<00:11:00.259> with<00:11:00.379> this<00:11:00.589> besides<00:11:00.800> the<00:11:01.399> obvious
obsessed with this besides the obvious
obsessed with this besides the obvious
family<00:11:02.089> aspects<00:11:02.509> is<00:11:02.689> that<00:11:02.899> I<00:11:03.019> spend<00:11:03.350> a<00:11:03.410> lot<00:11:03.529> of
family aspects is that I spend a lot of
family aspects is that I spend a lot of
time<00:11:03.649> around<00:11:03.860> mathematicians<00:11:04.610> and
time around mathematicians and
time around mathematicians and
mathematicians<00:11:06.410> are<00:11:06.649> drawn<00:11:06.980> to<00:11:07.009> places<00:11:07.639> where
mathematicians are drawn to places where
mathematicians are drawn to places where
there's<00:11:07.939> a<00:11:07.999> lot<00:11:08.149> of<00:11:08.180> data<00:11:08.449> because<00:11:08.809> they<00:11:08.959> can
there's a lot of data because they can
there's a lot of data because they can
use<00:11:09.319> it<00:11:09.499> to<00:11:09.680> tease<00:11:09.949> signals<00:11:10.519> out<00:11:10.699> of<00:11:10.850> noise<00:11:11.029> and
use it to tease signals out of noise and
use it to tease signals out of noise and
those<00:11:12.740> correlations<00:11:13.189> they<00:11:13.519> can<00:11:13.699> tease<00:11:13.819> out
those correlations they can tease out
those correlations they can tease out
they're<00:11:14.180> not<00:11:14.360> necessarily<00:11:14.529> causal<00:11:15.529> agents
they're not necessarily causal agents
they're not necessarily causal agents
but<00:11:16.819> math<00:11:17.089> in<00:11:17.569> this<00:11:17.930> day<00:11:18.110> and<00:11:18.139> age<00:11:18.319> is<00:11:18.559> like<00:11:18.709> a
but math in this day and age is like a
but math in this day and age is like a
giant<00:11:19.040> set<00:11:19.279> of<00:11:19.309> power<00:11:19.639> tools<00:11:20.230> that<00:11:21.230> we're
giant set of power tools that we're
giant set of power tools that we're
leaving<00:11:21.740> on<00:11:21.860> the<00:11:21.889> floor<00:11:22.339> not<00:11:23.180> plugged<00:11:23.600> in<00:11:23.839> and
leaving on the floor not plugged in and
leaving on the floor not plugged in and
health<00:11:24.259> while<00:11:24.589> we<00:11:24.709> use<00:11:24.860> hand<00:11:25.220> saws<00:11:25.459> if<00:11:26.559> we<00:11:27.559> have
health while we use hand saws if we have
health while we use hand saws if we have
a<00:11:28.220> lot<00:11:28.819> of<00:11:28.850> shared<00:11:29.269> genotypes<00:11:29.870> and<00:11:30.170> a<00:11:30.589> lot<00:11:30.800> of
a lot of shared genotypes and a lot of
a lot of shared genotypes and a lot of
shared<00:11:31.250> outcomes<00:11:31.850> and<00:11:32.240> a<00:11:32.420> lot<00:11:32.569> of<00:11:32.600> shared
shared outcomes and a lot of shared
shared outcomes and a lot of shared
lifestyle<00:11:33.439> choices<00:11:33.769> and<00:11:34.069> a<00:11:34.189> lot<00:11:34.339> of<00:11:34.370> shared
lifestyle choices and a lot of shared
lifestyle choices and a lot of shared
environmental<00:11:35.180> information<00:11:35.470> we<00:11:36.470> can<00:11:36.589> start
environmental information we can start
environmental information we can start
to<00:11:37.100> tease<00:11:37.399> out<00:11:37.610> the<00:11:37.790> correlations<00:11:38.389> between
to tease out the correlations between
to tease out the correlations between
subtle<00:11:39.079> variations<00:11:39.589> and<00:11:39.709> people<00:11:40.160> the<00:11:40.879> choices
subtle variations and people the choices
subtle variations and people the choices
they<00:11:41.480> make<00:11:41.720> and<00:11:41.959> the<00:11:42.439> health<00:11:42.620> that<00:11:42.829> they
they make and the health that they
they make and the health that they
create<00:11:43.339> as<00:11:43.550> a<00:11:43.610> result<00:11:43.879> of<00:11:44.000> those<00:11:44.149> choices<00:11:44.420> and
create as a result of those choices and
create as a result of those choices and
is<00:11:45.379> open<00:11:45.680> source<00:11:45.829> infrastructure<00:11:46.430> to<00:11:46.519> do<00:11:46.639> all
is open source infrastructure to do all
is open source infrastructure to do all
of<00:11:46.819> this<00:11:47.120> sage<00:11:47.720> by<00:11:47.899> our<00:11:48.019> networks<00:11:48.319> is<00:11:48.470> a
of this sage by our networks is a
of this sage by our networks is a
non-profit<00:11:49.189> that's<00:11:49.370> built<00:11:49.579> a<00:11:49.699> giant<00:11:49.939> math
non-profit that's built a giant math
non-profit that's built a giant math
system<00:11:50.629> that's<00:11:51.350> waiting<00:11:51.620> for<00:11:51.980> data<00:11:52.240> but<00:11:53.240> there
system that's waiting for data but there
system that's waiting for data but there
isn't<00:11:53.629> any<00:11:55.240> so<00:11:56.240> that's<00:11:56.360> what<00:11:56.509> I<00:11:56.540> do<00:11:56.660> I've
isn't any so that's what I do I've
isn't any so that's what I do I've
actually<00:11:57.259> started<00:11:57.889> what<00:11:58.519> we<00:11:58.670> think<00:11:59.029> is<00:11:59.240> the
actually started what we think is the
actually started what we think is the
world's<00:11:59.839> first<00:12:00.199> fully<00:12:00.529> digital<00:12:01.160> fully<00:12:02.000> self
world's first fully digital fully self
world's first fully digital fully self
contributed<00:12:03.399> unlimited<00:12:04.399> in<00:12:04.519> scope<00:12:05.019> global
contributed unlimited in scope global
contributed unlimited in scope global
and<00:12:06.110> participation<00:12:06.679> ethically<00:12:07.519> approved
and participation ethically approved
and participation ethically approved
clinical<00:12:08.689> research<00:12:09.019> study<00:12:09.319> where<00:12:09.829> you
clinical research study where you
clinical research study where you
contribute<00:12:10.610> the<00:12:10.910> data<00:12:11.120> so<00:12:12.050> if<00:12:12.170> you<00:12:12.290> reach
contribute the data so if you reach
contribute the data so if you reach
behind<00:12:12.679> yourself<00:12:13.160> and<00:12:13.339> you<00:12:13.399> grab<00:12:13.579> the<00:12:13.730> dust<00:12:13.939> if
behind yourself and you grab the dust if
behind yourself and you grab the dust if
you<00:12:14.300> reach<00:12:14.449> into<00:12:14.660> your<00:12:14.689> body<00:12:14.899> and<00:12:15.079> grab<00:12:15.259> your
you reach into your body and grab your
you reach into your body and grab your
genome<00:12:15.769> if<00:12:15.980> you<00:12:16.579> reach<00:12:16.730> into<00:12:16.939> the<00:12:17.029> medical
genome if you reach into the medical
genome if you reach into the medical
system<00:12:17.480> and<00:12:17.779> somehow<00:12:17.959> extract<00:12:18.500> your<00:12:18.620> medical
system and somehow extract your medical
system and somehow extract your medical
record
record
record
you<00:12:20.180> can<00:12:20.330> actually<00:12:20.660> go<00:12:20.779> through<00:12:20.810> an<00:12:21.110> online
you can actually go through an online
you can actually go through an online
informed<00:12:22.100> consent<00:12:22.430> process<00:12:22.459> because<00:12:23.270> the
informed consent process because the
informed consent process because the
donation<00:12:23.990> of<00:12:24.080> the<00:12:24.170> comments<00:12:24.470> must<00:12:24.620> be
donation of the comments must be
donation of the comments must be
voluntary<00:12:25.370> and<00:12:25.490> it<00:12:25.730> must<00:12:25.850> be<00:12:25.940> informed<00:12:26.450> and
voluntary and it must be informed and
voluntary and it must be informed and
you<00:12:27.290> can<00:12:27.440> actually<00:12:27.680> upload<00:12:28.130> your<00:12:28.550> information
you can actually upload your information
you can actually upload your information
and<00:12:29.330> have<00:12:29.630> its<00:12:29.810> indicated<00:12:30.140> to<00:12:30.890> the
and have its indicated to the
and have its indicated to the
mathematicians<00:12:31.610> who<00:12:31.760> will<00:12:31.850> do<00:12:31.970> this<00:12:32.089> sort<00:12:32.300> of
mathematicians who will do this sort of
mathematicians who will do this sort of
big<00:12:32.600> data<00:12:32.779> research<00:12:33.260> and<00:12:33.529> the<00:12:34.339> goal<00:12:34.550> is<00:12:34.760> to<00:12:34.970> get
big data research and the goal is to get
big data research and the goal is to get
a<00:12:35.330> hundred<00:12:35.570> thousand<00:12:36.110> in<00:12:36.200> the<00:12:36.230> first<00:12:36.470> year<00:12:36.890> and
a hundred thousand in the first year and
a hundred thousand in the first year and
a<00:12:37.130> million<00:12:37.370> in<00:12:37.640> the<00:12:37.730> first<00:12:37.850> five<00:12:38.240> years<00:12:38.540> so
a million in the first five years so
a million in the first five years so
that<00:12:38.779> we<00:12:38.930> have<00:12:38.959> a<00:12:39.339> statistically<00:12:40.339> significant
that we have a statistically significant
that we have a statistically significant
cohort<00:12:41.660> that<00:12:42.260> you<00:12:42.410> can<00:12:42.560> use<00:12:42.740> to<00:12:42.920> take<00:12:43.100> smaller
cohort that you can use to take smaller
cohort that you can use to take smaller
sample<00:12:44.060> sizes<00:12:44.270> from<00:12:44.510> traditional<00:12:44.959> research
sample sizes from traditional research
sample sizes from traditional research
and<00:12:45.500> map<00:12:45.890> it<00:12:45.920> against<00:12:46.430> so<00:12:47.420> you<00:12:47.480> can<00:12:47.690> use<00:12:47.810> it<00:12:47.959> to
and map it against so you can use it to
and map it against so you can use it to
tease<00:12:48.380> out<00:12:48.620> those<00:12:48.980> subtle<00:12:49.310> correlations
tease out those subtle correlations
tease out those subtle correlations
between<00:12:50.120> the<00:12:51.080> variations<00:12:51.589> that<00:12:51.680> make<00:12:51.890> us
between the variations that make us
between the variations that make us
unique<00:12:52.070> and<00:12:52.610> the<00:12:53.300> kinds<00:12:53.570> of<00:12:53.630> health<00:12:53.810> that<00:12:53.990> we
unique and the kinds of health that we
unique and the kinds of health that we
need<00:12:54.260> to<00:12:54.410> move<00:12:55.130> forward<00:12:55.430> as<00:12:55.490> a<00:12:55.520> society<00:12:56.050> and<00:12:57.050> I
need to move forward as a society and I
need to move forward as a society and I
spent<00:12:57.860> a<00:12:57.890> lot<00:12:58.070> of<00:12:58.100> time<00:12:58.190> around<00:12:58.520> other<00:12:59.060> Commons
spent a lot of time around other Commons
spent a lot of time around other Commons
I've<00:12:59.660> been<00:12:59.779> around<00:13:00.020> the<00:13:00.860> early<00:13:01.100> web<00:13:01.310> I've<00:13:01.640> been
I've been around the early web I've been
I've been around the early web I've been
around<00:13:02.270> the<00:13:02.899> early<00:13:03.140> Creative<00:13:03.500> Commons<00:13:03.680> world
around the early Creative Commons world
around the early Creative Commons world
and<00:13:04.339> there's<00:13:04.490> four<00:13:04.760> things<00:13:05.000> that<00:13:05.120> all<00:13:05.330> of
and there's four things that all of
and there's four things that all of
these<00:13:05.600> share<00:13:05.990> which<00:13:06.230> is<00:13:06.380> they're<00:13:06.830> all<00:13:06.980> really
these share which is they're all really
these share which is they're all really
simple<00:13:07.790> and<00:13:07.910> so<00:13:08.390> if<00:13:08.480> you<00:13:08.570> were<00:13:08.660> to<00:13:08.690> go<00:13:08.930> to<00:13:08.990> the
simple and so if you were to go to the
simple and so if you were to go to the
website<00:13:09.890> and<00:13:09.920> then<00:13:10.160> role<00:13:10.310> in<00:13:10.430> this<00:13:10.520> study
website and then role in this study
website and then role in this study
you're<00:13:10.940> not<00:13:11.060> going<00:13:11.180> to<00:13:11.270> see<00:13:11.450> something
you're not going to see something
you're not going to see something
complicated<00:13:12.670> but<00:13:13.670> it's<00:13:13.790> not<00:13:13.940> simplistic
complicated but it's not simplistic
complicated but it's not simplistic
these<00:13:16.220> things<00:13:16.399> are<00:13:16.610> weak<00:13:17.350> intentionally
these things are weak intentionally
these things are weak intentionally
right<00:13:18.860> because<00:13:19.040> you<00:13:19.250> can<00:13:19.399> always<00:13:19.550> add<00:13:19.760> power
right because you can always add power
right because you can always add power
and<00:13:20.420> control<00:13:20.600> to<00:13:20.930> a<00:13:20.959> system<00:13:21.410> but<00:13:21.890> it's<00:13:22.010> very
and control to a system but it's very
and control to a system but it's very
difficult<00:13:22.339> to<00:13:22.520> remove<00:13:22.880> those<00:13:23.120> things<00:13:23.450> if<00:13:23.600> you
difficult to remove those things if you
difficult to remove those things if you
put<00:13:23.870> them<00:13:23.990> in<00:13:24.110> at<00:13:24.230> the<00:13:24.260> beginning<00:13:24.680> and<00:13:24.829> so
put them in at the beginning and so
put them in at the beginning and so
being<00:13:26.029> simple<00:13:26.480> doesn't<00:13:26.600> mean<00:13:26.839> being
being simple doesn't mean being
being simple doesn't mean being
simplistic<00:13:27.380> and<00:13:27.829> being<00:13:28.010> weak<00:13:28.160> doesn't<00:13:28.459> mean
simplistic and being weak doesn't mean
simplistic and being weak doesn't mean
weakness<00:13:29.329> right<00:13:30.050> those<00:13:30.230> are<00:13:30.260> strengths<00:13:30.860> in
weakness right those are strengths in
weakness right those are strengths in
the<00:13:31.370> system<00:13:31.730> and<00:13:31.880> open<00:13:32.839> doesn't<00:13:33.140> mean<00:13:33.260> that
the system and open doesn't mean that
the system and open doesn't mean that
there's<00:13:33.649> no<00:13:33.800> money<00:13:34.480> closed<00:13:35.480> systems
there's no money closed systems
there's no money closed systems
corporations<00:13:37.070> make<00:13:37.490> a<00:13:37.520> lot<00:13:37.760> of<00:13:37.790> money<00:13:38.060> on<00:13:38.149> the
corporations make a lot of money on the
corporations make a lot of money on the
open<00:13:38.600> web<00:13:38.720> and<00:13:39.050> then<00:13:39.470> one<00:13:39.589> of<00:13:39.620> the<00:13:39.740> reasons<00:13:40.010> why
open web and then one of the reasons why
open web and then one of the reasons why
the<00:13:40.190> open<00:13:40.459> web<00:13:40.579> lives<00:13:40.970> is<00:13:41.360> that<00:13:41.810> corporations
the open web lives is that corporations
the open web lives is that corporations
have<00:13:42.860> a<00:13:43.100> vested<00:13:43.490> interest<00:13:43.610> in<00:13:44.000> the<00:13:44.240> openness
have a vested interest in the openness
have a vested interest in the openness
of<00:13:44.839> the<00:13:45.140> system<00:13:46.180> so<00:13:47.180> all<00:13:47.390> of<00:13:47.420> these<00:13:47.750> things<00:13:47.990> are
of the system so all of these things are
of the system so all of these things are
part<00:13:48.410> of<00:13:48.500> this<00:13:48.680> of<00:13:48.980> the<00:13:49.160> clinical<00:13:49.610> study<00:13:49.850> that
part of this of the clinical study that
part of this of the clinical study that
we've<00:13:50.120> created<00:13:50.420> so<00:13:50.810> you<00:13:50.870> can<00:13:51.079> actually<00:13:51.260> come
we've created so you can actually come
we've created so you can actually come
in<00:13:51.890> all<00:13:52.250> you<00:13:52.490> have<00:13:52.579> to<00:13:52.700> be<00:13:52.790> is<00:13:52.880> 14<00:13:53.300> years<00:13:53.329> old
in all you have to be is 14 years old
in all you have to be is 14 years old
willing<00:13:54.260> to<00:13:54.350> sign<00:13:54.470> a<00:13:54.529> contract<00:13:54.800> that<00:13:55.010> says<00:13:55.220> I'm
willing to sign a contract that says I'm
willing to sign a contract that says I'm
not<00:13:55.459> going<00:13:55.579> to<00:13:55.640> be<00:13:55.700> a<00:13:55.730> jerk<00:13:56.029> basically<00:13:56.779> and
not going to be a jerk basically and
not going to be a jerk basically and
you're<00:13:57.829> in<00:13:57.950> you<00:13:58.610> can<00:13:58.760> start<00:13:58.940> analyzing<00:13:59.480> the
you're in you can start analyzing the
you're in you can start analyzing the
data<00:13:59.720> you<00:14:00.440> do<00:14:00.529> have<00:14:00.649> to<00:14:00.709> solve<00:14:00.890> a<00:14:00.950> CAPTCHA<00:14:01.339> as
data you do have to solve a CAPTCHA as
data you do have to solve a CAPTCHA as
well<00:14:01.790> right
well right
well right
and<00:14:04.500> if<00:14:05.500> you'd<00:14:05.650> like<00:14:05.680> to<00:14:05.830> build<00:14:06.190> corporate
and if you'd like to build corporate
and if you'd like to build corporate
structures<00:14:07.630> on<00:14:07.810> top<00:14:07.990> of<00:14:08.140> it<00:14:08.230> that's<00:14:08.770> okay<00:14:09.040> too
structures on top of it that's okay too
structures on top of it that's okay too
that's<00:14:09.640> all<00:14:09.910> in<00:14:10.180> the<00:14:10.270> consent<00:14:10.720> so<00:14:11.410> if<00:14:11.470> you
that's all in the consent so if you
that's all in the consent so if you
don't<00:14:11.770> like<00:14:11.950> those<00:14:12.130> terms<00:14:12.370> you<00:14:12.610> don't<00:14:12.760> come<00:14:12.940> in
don't like those terms you don't come in
don't like those terms you don't come in
and<00:14:13.600> it's<00:14:13.780> very<00:14:14.080> much<00:14:14.350> the<00:14:14.770> design<00:14:15.100> principles
and it's very much the design principles
and it's very much the design principles
of<00:14:16.060> a<00:14:16.150> Commons<00:14:16.600> that<00:14:17.020> we're<00:14:17.140> trying<00:14:17.230> to<00:14:17.440> bring
of a Commons that we're trying to bring
of a Commons that we're trying to bring
the<00:14:17.710> health<00:14:17.890> data<00:14:18.160> and<00:14:19.410> the<00:14:20.410> other<00:14:20.560> thing
the health data and the other thing
the health data and the other thing
about<00:14:20.920> these<00:14:21.100> systems<00:14:21.610> is<00:14:21.760> that<00:14:21.820> it<00:14:22.060> only
about these systems is that it only
about these systems is that it only
takes<00:14:22.420> a<00:14:22.540> small<00:14:22.720> number<00:14:23.170> of<00:14:23.200> really
takes a small number of really
takes a small number of really
unreasonable<00:14:23.830> people<00:14:24.340> working<00:14:25.000> together<00:14:25.170> to
unreasonable people working together to
unreasonable people working together to
create<00:14:26.320> it<00:14:27.190> didn't<00:14:27.460> take<00:14:27.670> that<00:14:27.880> many<00:14:28.120> people
create it didn't take that many people
create it didn't take that many people
to<00:14:28.840> make<00:14:28.990> Wikipedia<00:14:29.530> Wikipedia<00:14:29.680> or<00:14:30.340> to<00:14:30.430> keep
to make Wikipedia Wikipedia or to keep
to make Wikipedia Wikipedia or to keep
it<00:14:30.760> wikipedia<00:14:31.480> and<00:14:31.740> we're<00:14:32.740> not<00:14:32.830> supposed<00:14:33.160> to
it wikipedia and we're not supposed to
it wikipedia and we're not supposed to
be<00:14:33.370> unreasonable<00:14:33.820> in<00:14:33.940> health<00:14:34.120> and<00:14:34.360> so<00:14:34.450> I<00:14:34.480> hate
be unreasonable in health and so I hate
be unreasonable in health and so I hate
this<00:14:34.840> word<00:14:34.990> patient<00:14:35.560> right<00:14:36.490> I<00:14:36.670> don't<00:14:36.850> like
this word patient right I don't like
this word patient right I don't like
being<00:14:37.540> patient<00:14:38.140> when<00:14:38.410> systems<00:14:38.860> are<00:14:39.040> broken
being patient when systems are broken
being patient when systems are broken
and<00:14:39.960> healthcare<00:14:40.960> is<00:14:41.080> broken<00:14:41.610> I'm<00:14:42.610> talking
and healthcare is broken I'm talking
and healthcare is broken I'm talking
about<00:14:43.030> the<00:14:43.210> politics<00:14:43.570> of<00:14:43.720> health<00:14:43.900> care<00:14:43.960> i'm
about the politics of health care i'm
about the politics of health care i'm
talking<00:14:44.320> about<00:14:44.380> the<00:14:44.560> way<00:14:44.680> we<00:14:44.710> scientifically
talking about the way we scientifically
talking about the way we scientifically
approach<00:14:45.670> health<00:14:45.940> care<00:14:46.150> so<00:14:46.810> i<00:14:46.840> don't<00:14:47.080> want<00:14:47.290> to
approach health care so i don't want to
approach health care so i don't want to
be<00:14:47.440> patient<00:14:47.950> and<00:14:48.070> the<00:14:48.700> task<00:14:48.910> i'm<00:14:49.180> giving<00:14:49.480> to
be patient and the task i'm giving to
be patient and the task i'm giving to
you<00:14:49.720> is<00:14:49.900> to<00:14:49.930> not<00:14:50.230> be<00:14:50.440> patient<00:14:50.910> so<00:14:51.910> I'd<00:14:51.970> like<00:14:52.030> you
you is to not be patient so I'd like you
you is to not be patient so I'd like you
to<00:14:52.270> actually<00:14:52.570> try<00:14:52.870> when<00:14:53.110> you<00:14:53.140> go<00:14:53.320> home<00:14:53.530> to<00:14:54.370> get
to actually try when you go home to get
to actually try when you go home to get
your<00:14:54.700> data<00:14:54.880> you'll<00:14:55.720> be<00:14:55.840> shocked<00:14:56.230> and<00:14:56.530> offended
your data you'll be shocked and offended
your data you'll be shocked and offended
and<00:14:57.310> I<00:14:57.370> would<00:14:57.520> bet<00:14:57.670> outraged<00:14:58.270> at<00:14:58.570> how<00:14:58.720> hard<00:14:59.080> it
and I would bet outraged at how hard it
and I would bet outraged at how hard it
is<00:14:59.260> to<00:15:00.160> get<00:15:00.310> it<00:15:00.720> but<00:15:01.720> it's<00:15:01.810> a<00:15:01.900> challenge<00:15:02.080> that<00:15:02.380> I
is to get it but it's a challenge that I
is to get it but it's a challenge that I
hope<00:15:02.560> you'll<00:15:02.710> take<00:15:02.950> and<00:15:03.280> maybe<00:15:04.210> you'll<00:15:04.480> share
hope you'll take and maybe you'll share
hope you'll take and maybe you'll share
it<00:15:04.900> maybe<00:15:05.050> you<00:15:05.410> won't<00:15:05.560> if<00:15:06.070> you<00:15:06.250> don't<00:15:06.280> have
it maybe you won't if you don't have
it maybe you won't if you don't have
anyone<00:15:06.790> in<00:15:06.820> your<00:15:06.880> family<00:15:06.970> who's<00:15:07.330> sick<00:15:07.600> maybe
anyone in your family who's sick maybe
anyone in your family who's sick maybe
you<00:15:07.990> wouldn't<00:15:08.260> be<00:15:08.410> unreasonable<00:15:09.060> but<00:15:10.060> if<00:15:10.180> you
you wouldn't be unreasonable but if you
you wouldn't be unreasonable but if you
do<00:15:10.480> if<00:15:10.690> you've<00:15:10.810> been<00:15:11.020> sick<00:15:11.320> then<00:15:11.770> maybe<00:15:11.950> you
do if you've been sick then maybe you
do if you've been sick then maybe you
would<00:15:12.400> and<00:15:13.270> we're<00:15:13.420> going<00:15:13.540> to<00:15:13.570> be<00:15:13.660> able<00:15:13.720> to<00:15:13.870> do
would and we're going to be able to do
would and we're going to be able to do
an<00:15:14.020> experiment<00:15:14.440> in<00:15:14.920> the<00:15:15.160> next<00:15:15.400> several<00:15:15.700> months
an experiment in the next several months
an experiment in the next several months
that<00:15:16.180> lets<00:15:16.330> us<00:15:16.450> know<00:15:16.480> exactly<00:15:16.990> how<00:15:17.110> many
that lets us know exactly how many
that lets us know exactly how many
unreasonable<00:15:17.740> people<00:15:17.830> are<00:15:18.160> out<00:15:18.340> there<00:15:18.370> this
unreasonable people are out there this
unreasonable people are out there this
is<00:15:19.360> the<00:15:19.450> Athena<00:15:19.750> Breast<00:15:20.020> Health<00:15:20.140> Network<00:15:20.650> it's
is the Athena Breast Health Network it's
is the Athena Breast Health Network it's
a<00:15:20.890> study<00:15:21.100> of<00:15:21.210> 150,000<00:15:22.210> women<00:15:22.420> in<00:15:22.510> California
a study of 150,000 women in California
a study of 150,000 women in California
and<00:15:23.550> they're<00:15:24.550> going<00:15:24.700> to<00:15:24.850> return<00:15:25.420> all<00:15:25.840> the<00:15:26.110> data
and they're going to return all the data
and they're going to return all the data
to<00:15:26.590> the<00:15:26.620> participants<00:15:27.160> of<00:15:27.220> the<00:15:27.340> study<00:15:27.550> in<00:15:27.820> a
to the participants of the study in a
to the participants of the study in a
computable<00:15:28.420> form<00:15:28.840> with<00:15:29.350> one<00:15:29.620> click<00:15:29.890> ability
computable form with one click ability
computable form with one click ability
to<00:15:30.550> load<00:15:30.700> it<00:15:30.850> into<00:15:31.030> the<00:15:31.480> study<00:15:31.780> that<00:15:31.960> I've<00:15:32.080> put
to load it into the study that I've put
to load it into the study that I've put
together<00:15:32.350> so<00:15:32.740> we'll<00:15:32.830> know<00:15:32.950> exactly<00:15:33.070> how<00:15:33.550> many
together so we'll know exactly how many
together so we'll know exactly how many
people<00:15:34.060> are<00:15:34.180> willing<00:15:34.300> to<00:15:34.450> be<00:15:34.600> unreasonable<00:15:36.060> so
people are willing to be unreasonable so
people are willing to be unreasonable so
what<00:15:37.210> I'd<00:15:37.300> end<00:15:37.600> is<00:15:38.700> the<00:15:39.700> most<00:15:39.880> beautiful<00:15:40.090> thing
what I'd end is the most beautiful thing
what I'd end is the most beautiful thing
I've<00:15:40.540> learned<00:15:40.810> since<00:15:41.020> I<00:15:41.140> quit<00:15:41.200> my<00:15:41.500> job<00:15:41.770> almost
I've learned since I quit my job almost
I've learned since I quit my job almost
a<00:15:42.430> year<00:15:42.550> ago<00:15:42.580> to<00:15:42.730> do<00:15:42.910> this<00:15:43.060> is<00:15:43.360> that<00:15:44.170> it<00:15:44.260> really
a year ago to do this is that it really
a year ago to do this is that it really
doesn't<00:15:44.830> take<00:15:44.980> very<00:15:45.190> many<00:15:45.400> of<00:15:45.610> us<00:15:45.760> to<00:15:46.270> achieve
doesn't take very many of us to achieve
doesn't take very many of us to achieve
spectacular<00:15:47.710> results<00:15:48.360> you<00:15:49.360> just<00:15:49.570> have<00:15:49.690> to<00:15:49.810> be
spectacular results you just have to be
spectacular results you just have to be
willing<00:15:49.990> to<00:15:50.440> be<00:15:50.560> unreasonable<00:15:51.250> and<00:15:51.430> the<00:15:51.550> risk
willing to be unreasonable and the risk
willing to be unreasonable and the risk
we're<00:15:51.970> running<00:15:52.180> is<00:15:52.270> not<00:15:52.300> the<00:15:52.540> risk<00:15:52.720> those<00:15:52.900> 14
we're running is not the risk those 14
we're running is not the risk those 14
men<00:15:53.620> who<00:15:53.830> got<00:15:54.040> yellow<00:15:54.340> fever<00:15:54.580> ran<00:15:54.970> right<00:15:55.660> is<00:15:55.780> to
men who got yellow fever ran right is to
men who got yellow fever ran right is to
be<00:15:56.080> naked<00:15:56.290> digitally<00:15:57.190> in<00:15:57.280> public<00:15:57.670> so<00:15:57.820> you<00:15:57.880> know
be naked digitally in public so you know
be naked digitally in public so you know
more<00:15:58.330> about<00:15:58.480> me<00:15:58.900> and<00:15:58.930> my<00:15:59.110> health<00:15:59.230> than<00:15:59.830> I<00:15:59.920> know
more about me and my health than I know
more about me and my health than I know
about<00:16:00.190> you<00:16:00.460> it's<00:16:00.640> asymmetric<00:16:01.270> now<00:16:01.420> and<00:16:01.740> being
about you it's asymmetric now and being
about you it's asymmetric now and being
naked<00:16:03.070> and<00:16:03.220> alone<00:16:03.300> can<00:16:04.300> be<00:16:04.390> terrifying<00:16:04.950> but<00:16:05.950> to
naked and alone can be terrifying but to
naked and alone can be terrifying but to
be<00:16:06.160> naked<00:16:06.340> in<00:16:06.550> a<00:16:06.640> group<00:16:07.170> voluntarily<00:16:08.170> it<00:16:08.350> can
be naked in a group voluntarily it can
be naked in a group voluntarily it can
be<00:16:08.560> quite<00:16:08.740> beautiful<00:16:09.190> and<00:16:09.310> so<00:16:10.090> it<00:16:10.180> doesn't
be quite beautiful and so it doesn't
be quite beautiful and so it doesn't
take<00:16:10.750> all<00:16:11.110> of<00:16:11.170> us<00:16:11.560> it<00:16:12.280> just<00:16:12.520> takes<00:16:12.730> all<00:16:12.910> of<00:16:12.940> some
take all of us it just takes all of some
take all of us it just takes all of some
of<00:16:13.390> us<00:16:13.480> thank<00:16:14.320> you
of us thank you
of us thank you
you
John Wilbanks, TED, TED, Ed, TED-Ed, TEDEducation, medical, medicine, medical, treatment, testing, data, research
