[Music]
after my first set of college exams in
bioengineering I went into septic shock
and cardiac arrest and spent the next 30
days in a coma and another 40 mildly
coherent in ICU I had been a healthy and
active 18 year old and to say this came
as a surprise would be an understatement
but this is not about my journey of
overcoming hardships this is about my
ability to view a part of my life I had
no memory of through a digital lens as a
gift my uncle Randy gathered every
Facebook post comment text and tweet
from my family and friends accounts this
compilation of emotion and sentiment
gave me some foundational pieces to
understanding the last months of my life
without these pieces of data those
seventy plus days would be gone as I
woke I wanted more details trying to
gather medical forms and tests and scans
but somehow these pieces of information
gathered about me
we’re not mine to own this experience
introduced me to the world of data it’s
often thought of as zeros and ones or
formally defined as factual information
such as measurements or statistics use
as a basis for reasoning discussion and
calculation but data is much more than
that
it’s the intimate and unique details of
a story your story it’s the digital
narrative of who you are where you’ve
been what you’ve done and maybe with
certain insights an indication of where
you will go what you will do and even
who you might become your digital life
paints a picture of you and this data
the story of your life is more valuable
and more in jeopardy than you may
realize when you think of data being at
risk you probably think of the big
hacking stories you see on the news but
there’s a modern-day hacker that the
news often overlooks and we tend to
close our eyes to these modern-day
hackers our technology companies like
Google Amazon Facebook and uber and they
don’t actually have to hack us at all
instead we use their apps and services
for free and in turn grant them
permission to watch collect and sell
information about everything we do
technology companies may market
themselves differently but make no
mistake they are all data collection
centers they sell our activity to
advertisers hedge funds market
researchers and governments all without
our knowledge or ability to do anything
about it consider how many apps you have
on your phone if you’re like me you
haven’t paid to use the single one why
do you think that is if you are not
paying for a product you are the product
it doesn’t feel like we’re paying for
these apps because we don’t pay in money
we pay in data and it’s worth far more
than any subscription fee you could pay
let me give you an example
Spotify meet around three billion
dollars in subscription services in 2017
in contrast Google a company we use for
free made a hundred and eleven billion
dollars on top of a seven hundred and
fifty billion dollar valuation Facebook
another company we use for free made 40
billion dollars on top of a six hundred
billion dollar valuation these high
valuations exist because not only do
they sell our data but they also use
this data to create artificial
intelligence tools and virtual
assistants creating more and more
revenue streams that you don’t get a
piece of sometimes even when you do pay
for a service without regulations they
can still make money off of your
personal data how many of you own an
Amazon echo I bet with that purchase of
$99.99 that you didn’t realize you also
signed seventeen contracts and about 94
pages of data they can collect from you
ever bought 23andme as a gift for a
relative or a friend or yourself it’s
okay me too
23andme sells your genetic data your DNA
to pharmaceutical companies for millions
of dollars they take the underlying
characteristic and unique code of who
you are
despite having paid for their service
and sell you quite literally to create
drugs that then you have to pay for
again now don’t get me wrong these
companies are not evil they are business
opportunists who saw a lucrative market
in collecting information on people and
capitalized on it in turn they do
provide us with valuable tools for every
aspect of our lives from communication
to transportation to banking I can
connect with family and friends all
across the world I can navigate any road
without trouble and if I don’t want to
drive I can click a button and have
someone take my lazy self from point A
to point B but while we are gaining
value from these companies
we have been lulled into a coma
ourselves where we’re unconscious of
what we’ve been giving away it isn’t
just money and revenue from sales or new
technology that makes these companies
worth billions of dollars it’s the fact
that our data gives power and control to
self-interested companies and
organizations in 2016 a company called
Cambridge analytical used Facebook data
to build psychological profiles on 50
million users without our permission or
knowledge many were angry because for
the first time an election cycle here in
America people saw that government
administrations could target persuade
and even manipulate people with
political content to see things a
certain way which in its very essence
threatened democracy and here’s why
targeted misleading information is a
form of censorship because it threatens
your freedom to think and make an
informed decision how can we be expected
to make use our brains to make the best
decision possible if the content we see
is pushed intentionally to influence or
to change it that’s why data is worth so
much its power the more data you have
the more
site you have into someone’s personality
their decision-making their lives the
more you can target those people with
personalized messages to control what a
user may do and may think right now
these companies own the future and
profiling you is legal common and done
every day but what we must realize is we
have the power to transform this current
system you may have noticed your inbox
was flooded with updated Terms of
agreement policies in May of this year a
general data protection regulation also
known as gdpr
came into effect in Europe and therefore
affected international companies gdpr
requires companies to tell users what
data is being collected and why and if
they want to share that data
it requires clear and active consent no
more pre check boxes that you can’t opt
out of most importantly it gives you a
right to a copy of the data they’ve
collected on you and the right to tell
the company they must delete the data
they have on you moves towards
regulations reveal hope that change can
happen laws could give us an opportunity
for a fresh start in a new system of our
creation you are the product and since
you’re the product these companies don’t
exist without you
together we can erase our digital past
and rebuild the future shifting the
companies that value our privacy and
forcing data collection companies to
change their practices or die out there
are ways you can be proactive about your
privacy today downloading browsers or
plugins that don’t track you as you
search online such as brave or
DuckDuckGo will only take two minutes
but can go a long way in showing we’re
willing to use our choices to support
privacy centered companies here’s what
our apps and services ecosystem could
look like if we scratch the past and
demand ownership over our digital future
one you’ll see more and more
subscription and fee based models
instead of free apps just like Netflix
and Spotify you pay a monthly or yearly
fee so
companies have the capital they need to
function and don’t have to sell you or
you pay a fee per transaction just as
some finance apps allow you to transfer
money to friends but charge you a fee or
percentage to do so to give-and-take
platforms new technology allows each of
our devices to play a secure role in a
decentralized ecosystem allowing for a
combination of different and kind of
funky business models for example a
company called oyster is a two-way model
on their platform every time you visit a
website your computer allows others
choose the extra storage space on your
laptop or device the website owner would
get indirectly paid by people wanting to
use that storage and because the
websites paid for you can browse ad free
and tracking free even further because
people are getting paid based on the
duration of your stay on their site
they’re incentivized to create credible
in-depth content for engagement versus
clickbait headlines for a moment of
attention and the third business model
my personal favorite and perhaps the
most ripe with opportunity is consent
based data platforms where users give
knowledgeable consent to share their
data anonymously companies sell it but
are required to give you your fair share
of the proceeds we’re no longer just
users we are collaborators and partners
with the companies we use you control
what you share and with whom and you get
paid maybe you sell your Facebook data
or your transaction history to help pay
the bills
maybe advertisers pay you for your time
and attention instead of a third party
app to grab your data to some it’s not
easy to picture what owning your data
could look like but imagine if I had all
of my medical histories secured and
encrypted on my phone imagine if I and
other survivors of septic shock could
share that data anonymously with sincere
medical researchers aggregated and
anonymous giving accurate insights and
information
diseases could we cure what medical
mysteries could we solve imagine a world
where you own this data your data you
could choose to keep it private or you
could sell it with others for a profit
and what if that profit paid for your
groceries the electric bill or your
health care itself together we can
create a universal basic income from the
data we generate every day and get paid
for simply being ourselves just think if
you gave companies permission to sell
you ads directly and for every one
dollar of revenue they make maybe you
get 20 30% or instead of Google selling
your search history as what you intend
to do or to buy you had a way to ping I
need a new car and let dealerships
advertise directly to you and use their
marketing budget to pay you or give you
a discount and ping car purchased I
don’t get ads for weeks after I’ve
already purchased an item transforming
to this new system will take research
and innovation but instead of companies
having power over you it’s time they
realize the greater power for real
change when working with you we deserve
to control our digital life and our
physical future we are the product and
now that we are aware it’s time we own it
after my first set of college exams in
bioengineering I went into septic shock
and cardiac arrest and spent the next 30
days in a coma and another 40 mildly
coherent in ICU I had been a healthy and
active 18 year old and to say this came
as a surprise would be an understatement
but this is not about my journey of
overcoming hardships this is about my
ability to view a part of my life I had
no memory of through a digital lens as a
gift my uncle Randy gathered every
Facebook post comment text and tweet
from my family and friends accounts this
compilation of emotion and sentiment
gave me some foundational pieces to
understanding the last months of my life
without these pieces of data those
seventy plus days would be gone as I
woke I wanted more details trying to
gather medical forms and tests and scans
but somehow these pieces of information
gathered about me
we’re not mine to own this experience
introduced me to the world of data it’s
often thought of as zeros and ones or
formally defined as factual information
such as measurements or statistics use
as a basis for reasoning discussion and
calculation but data is much more than
that
it’s the intimate and unique details of
a story your story it’s the digital
narrative of who you are where you’ve
been what you’ve done and maybe with
certain insights an indication of where
you will go what you will do and even
who you might become your digital life
paints a picture of you and this data
the story of your life is more valuable
and more in jeopardy than you may
realize when you think of data being at
risk you probably think of the big
hacking stories you see on the news but
there’s a modern-day hacker that the
news often overlooks and we tend to
close our eyes to these modern-day
hackers our technology companies like
Google Amazon Facebook and uber and they
don’t actually have to hack us at all
instead we use their apps and services
for free and in turn grant them
permission to watch collect and sell
information about everything we do
technology companies may market
themselves differently but make no
mistake they are all data collection
centers they sell our activity to
advertisers hedge funds market
researchers and governments all without
our knowledge or ability to do anything
about it consider how many apps you have
on your phone if you’re like me you
haven’t paid to use the single one why
do you think that is if you are not
paying for a product you are the product
it doesn’t feel like we’re paying for
these apps because we don’t pay in money
we pay in data and it’s worth far more
than any subscription fee you could pay
let me give you an example
Spotify meet around three billion
dollars in subscription services in 2017
in contrast Google a company we use for
free made a hundred and eleven billion
dollars on top of a seven hundred and
fifty billion dollar valuation Facebook
another company we use for free made 40
billion dollars on top of a six hundred
billion dollar valuation these high
valuations exist because not only do
they sell our data but they also use
this data to create artificial
intelligence tools and virtual
assistants creating more and more
revenue streams that you don’t get a
piece of sometimes even when you do pay
for a service without regulations they
can still make money off of your
personal data how many of you own an
Amazon echo I bet with that purchase of
$99.99 that you didn’t realize you also
signed seventeen contracts and about 94
pages of data they can collect from you
ever bought 23andme as a gift for a
relative or a friend or yourself it’s
okay me too
23andme sells your genetic data your DNA
to pharmaceutical companies for millions
of dollars they take the underlying
characteristic and unique code of who
you are
despite having paid for their service
and sell you quite literally to create
drugs that then you have to pay for
again now don’t get me wrong these
companies are not evil they are business
opportunists who saw a lucrative market
in collecting information on people and
capitalized on it in turn they do
provide us with valuable tools for every
aspect of our lives from communication
to transportation to banking I can
connect with family and friends all
across the world I can navigate any road
without trouble and if I don’t want to
drive I can click a button and have
someone take my lazy self from point A
to point B but while we are gaining
value from these companies
we have been lulled into a coma
ourselves where we’re unconscious of
what we’ve been giving away it isn’t
just money and revenue from sales or new
technology that makes these companies
worth billions of dollars it’s the fact
that our data gives power and control to
self-interested companies and
organizations in 2016 a company called
Cambridge analytical used Facebook data
to build psychological profiles on 50
million users without our permission or
knowledge many were angry because for
the first time an election cycle here in
America people saw that government
administrations could target persuade
and even manipulate people with
political content to see things a
certain way which in its very essence
threatened democracy and here’s why
targeted misleading information is a
form of censorship because it threatens
your freedom to think and make an
informed decision how can we be expected
to make use our brains to make the best
decision possible if the content we see
is pushed intentionally to influence or
to change it that’s why data is worth so
much its power the more data you have
the more
site you have into someone’s personality
their decision-making their lives the
more you can target those people with
personalized messages to control what a
user may do and may think right now
these companies own the future and
profiling you is legal common and done
every day but what we must realize is we
have the power to transform this current
system you may have noticed your inbox
was flooded with updated Terms of
agreement policies in May of this year a
general data protection regulation also
known as gdpr
came into effect in Europe and therefore
affected international companies gdpr
requires companies to tell users what
data is being collected and why and if
they want to share that data
it requires clear and active consent no
more pre check boxes that you can’t opt
out of most importantly it gives you a
right to a copy of the data they’ve
collected on you and the right to tell
the company they must delete the data
they have on you moves towards
regulations reveal hope that change can
happen laws could give us an opportunity
for a fresh start in a new system of our
creation you are the product and since
you’re the product these companies don’t
exist without you
together we can erase our digital past
and rebuild the future shifting the
companies that value our privacy and
forcing data collection companies to
change their practices or die out there
are ways you can be proactive about your
privacy today downloading browsers or
plugins that don’t track you as you
search online such as brave or
DuckDuckGo will only take two minutes
but can go a long way in showing we’re
willing to use our choices to support
privacy centered companies here’s what
our apps and services ecosystem could
look like if we scratch the past and
demand ownership over our digital future
one you’ll see more and more
subscription and fee based models
instead of free apps just like Netflix
and Spotify you pay a monthly or yearly
fee so
companies have the capital they need to
function and don’t have to sell you or
you pay a fee per transaction just as
some finance apps allow you to transfer
money to friends but charge you a fee or
percentage to do so to give-and-take
platforms new technology allows each of
our devices to play a secure role in a
decentralized ecosystem allowing for a
combination of different and kind of
funky business models for example a
company called oyster is a two-way model
on their platform every time you visit a
website your computer allows others
choose the extra storage space on your
laptop or device the website owner would
get indirectly paid by people wanting to
use that storage and because the
websites paid for you can browse ad free
and tracking free even further because
people are getting paid based on the
duration of your stay on their site
they’re incentivized to create credible
in-depth content for engagement versus
clickbait headlines for a moment of
attention and the third business model
my personal favorite and perhaps the
most ripe with opportunity is consent
based data platforms where users give
knowledgeable consent to share their
data anonymously companies sell it but
are required to give you your fair share
of the proceeds we’re no longer just
users we are collaborators and partners
with the companies we use you control
what you share and with whom and you get
paid maybe you sell your Facebook data
or your transaction history to help pay
the bills
maybe advertisers pay you for your time
and attention instead of a third party
app to grab your data to some it’s not
easy to picture what owning your data
could look like but imagine if I had all
of my medical histories secured and
encrypted on my phone imagine if I and
other survivors of septic shock could
share that data anonymously with sincere
medical researchers aggregated and
anonymous giving accurate insights and
information
diseases could we cure what medical
mysteries could we solve imagine a world
where you own this data your data you
could choose to keep it private or you
could sell it with others for a profit
and what if that profit paid for your
groceries the electric bill or your
health care itself together we can
create a universal basic income from the
data we generate every day and get paid
for simply being ourselves just think if
you gave companies permission to sell
you ads directly and for every one
dollar of revenue they make maybe you
get 20 30% or instead of Google selling
your search history as what you intend
to do or to buy you had a way to ping I
need a new car and let dealerships
advertise directly to you and use their
marketing budget to pay you or give you
a discount and ping car purchased I
don’t get ads for weeks after I’ve
already purchased an item transforming
to this new system will take research
and innovation but instead of companies
having power over you it’s time they
realize the greater power for real
change when working with you we deserve
to control our digital life and our
physical future we are the product and
now that we are aware it’s time we own it
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