Democratizing Science Of the people For the people By the people
[Music]
i grew up
on an independent little rock in the
middle of the irish sea called the isle
of man
where open was just our way of life
and everyone knew everyone else’s
business
especially my parents a plumber and a
hairdresser
who taught me that whether you’re fixing
someone’s hair or their toilet
working with the best tools and people
can solve all
of our problems in high school
i was fascinated by science but i found
it cold
and dispassionate it’s language
intimidating
i sometimes still do and yet i’m a
neuroscientist
in my early twenties i worked on skid
row
in la and came face to face for the
first
time with homeless vietnam vets and
addicted moms
about my own age and i absorbed the pain
of mental illness staring right back at
me
i decided right then that understanding
how life changes our brains
could help us understand each other
better
maybe help us tackle society’s growing
mental health
challenges and make this world
a kinda healthier place to be
so i headed off to graduate school got
my brain scientist credentials
professored my way through a pretty
exciting research career
and write at its peak stepped off
neuroscience’s front line
to commit myself to democratizing
science
why because science
is not working the way that we need it
to
science is still painfully out of reach
to most people
and scientific ignorance gets amplified
daily throughout social media
manipulating and eroding public trust in
science with every single
misinformed tweet
ignoring science cost us over a million
lives
this year but i get how this happens
science can inspire great hope but it is
elitist and many of its fields
including neuroscience are complex
and siloed and riddled with failures to
reproduce high-profile findings
why should the public trust us when
scientists
are busy competing with each other or
putting data that cost millions of
public dollars to fund
into inaccessible silos
the good news is that most scientists
do want more open collaboration
and culture change but the ecosystem
that can help make that happen
open science is only just being built
i stepped off my career treadmill to
help my community team up
and share what we know break open our
protected silos and invite in experts
from other fields
to help us change the way that science
gets done
thankfully i found out i was not alone
and together we have grown
the open science movement developing
ways
to look under the hood at each other’s
data and find ways to share
our ideas tools and software
but if we are really going to change
science
and make it impactful we have to reach
down from our ivory towers
and include those who will be the most
impacted by it
you and that is citizen science
some of the most inspirational
neuroscience insight i ever received
hasn’t come from people with md’s or
phds
but from people in the real world
savvy wise 80-year-old ladies in
long-term care facilities
pregnant recovering drug addicts in
women’s prisons
and baltimore daycare moms fighting the
government for the vital food programs
that could sustain their children’s
growing brains
imagine how public trust in science
could change
if those citizens engage in the science
that they care the most about
and then maybe benefit from it
but can science really be advanced by
people
with no formal training in it
in 2015 i joined an obama
white house think tank brainstorming
upcoming challenges in their big data
initiatives including
the brain initiative i was invited back
shortly after to present on how citizen
engagement a true passion of our science
geek of a former president
could transform both science and
experiential
education i came back with a plan
and zoran popovich the university of
washington center for game science and i
got busy building a global neuroscience
lab
online there are 8
billion people on this planet and we are
as similar and yet
different as the 80 billion neurons that
sit inside
each of our heads in our game mozack
you get to become part of a global
village carefully tracing
images of the brain’s neurons providing
stunning reconstructions that
neuroscientists can use
thus far thousands of people from 184
countries
including the isle of man have
participated in mosaic
carefully reconstructing the brain
one neuron at a time providing
vital data that developers need
to be able to take single cells
and reconstruct them into a 3d brain map
for understanding us in mozack
team gamers and retirees work together
on the same team
they feel inspired to learn and
say that they feel empowered
to be at the frontier of science doing
things that really matter
it turns out there are many frontiers of
scientific discovery
that are now available to anyone with an
internet
and seattle is becoming a bit of a
global hub for this
foldit a game out of david baker’s
institute for protein design at the
university of washington
has now been played by over half a
million people worldwide
including my own daughter when she was
in high school
folded gamers are challenged to figure
out how proteins fold
in different environments why is this
important
well coproteins on the surface of fatal
viruses
are the keys that they use to lock in
and attack our bodies
so far folded gamers have solved
co-protein structures for hiv
ebola and now covid19
their strategies will help us to design
new therapeutic locks
that could save many of our lives in the
next pandemic
or perhaps stop misfolded proteins
from gradually destroying our brains in
devastating diseases like parkinson’s
alzheimer’s or als across south lake
union
sage bionetworks one of the world’s
leading open science organizations
run dream challenges these are
competitions
some with monetary rewards that anybody
can sign on to do
to solve patent-finding missions
in human disease data so far
sages dream teams have identified unique
early disease biomarkers
that could help diagnosis and treatment
of bone damage
cardiovascular disease cancer
alzheimer’s parkinson’s and now
covid19 this might be a bit of a
surprise
but getting some traditional scientists
to accept
that regular folk with no formal
training could contribute to
understanding
their precious data has been a bit of a
hard sell
but some of us knew that it was a risk
worth taking
and that it had to stop from within it
is not
that much fun being dismissed belittled
or having your sanity questioned by some
of your more traditional colleagues
but nevertheless we persisted and have
grown a global diverse discovery force
of uber drivers retirees teachers
comedians lawyers and yes
even hairdressers and plumbers who can
hop on a screen
anywhere in the world help us take on
big data
and win one of these
is carmen mandel an argentinian amateur
photographer
who has used her artistic eye to produce
vital data
for nasa’s globe program this
is a program where nasa recruits people
of
all ages and types across the world to
come in and work with their top
scientists
to develop new models to combat climate
change
nasa also reached out this year to this
planet’s citizens
to see if they could help them design a
future when we might have to live
on another one they just completed
a luna lou challenge
publicly sourcing designs for how we
might
one day sustainably poop on the moon
i’m fairly sure that my dad the
highly competitive air force vet plumber
who loved space
and never had the chance to be an
astronaut would have been
all over this one
in the last five years open and citizen
science
worldwide have assembled an amazing team
that has now converged to create a sweet
spot
where our new scientific democracy takes
off
this is where i live it is where experts
and enthusiasts work together
on open data this year
we underwent a major teen growth spurt
driving unprecedented global
collaboration
in scientific discovery when we were all
challenged
with a common enemy covid
- 3d printer designs
openly shared rapidly produced
masks ventilator parts
facial shields in the parts of the world
where they were most desperately needed
when international data become open
viral dna sequence hot of the pipeline
in china
and early health data out of south
korean hospitals
can be modeled anywhere producing new
viral assays and tracing techniques
and also warning signs for us to protect
the viruses most vulnerable victims
worldwide diversity is critical
in this i’m currently working with
two people-powered projects on youth
mental health
and dementia where different cultural
perspectives will be essential
because people with different
backgrounds see patterns
in different ways and can then make
sense of them
for their own community ambitious
brain projects across the world are now
filling our data banks with
exabytes of data using technologies
where we can now
visualize thoughts and emotions racing
through our human brain connectome
producing
glorious colors as we learn
age or become infected with a virus
each color change is a signature
of how life is influencing our brain
giving us our unique brain fingerprint
each color change could also hold clues
as to whether
we might succumb to mental illness but
we can’t just pop these images in an
algorithm
and get it to spit out magical answers
telling us how we’re doing
for that we need to know the questions
to ask
we need your insight and tech at the
table
scientists just can’t do this alone
ai holds incredible potential
for changing our future but still cannot
match the power of the incredible
pattern spot in human mind
i don’t need a computer program to tell
me which of these
i would rather eat than cuddle
artificial intelligence needs human
insight ideas and innovation
to put that eye into ai
seeing and understanding patterns in 4d
is our super power something my hyper 13
year old can do better than a
supercomputer
you and your mind will be needed
to help shape the artificial
intelligence of the future
and to help keep it humane culturally
inclusive
and ethical we are at an incredible
moment in history
covet 19 might have isolated us at home
but open and citizen science have
created a new scientific democracy
where diverse minds anywhere can hop
online
and work with others in the world to
begin to solve the problems
of our future
the internet is your magical portal
into a people-powered global revolution
to accelerate scientific discovery where
you get to work along sciences leaders
and help carve paths of understanding
through our opening
silos of data
in this science democracy
we all get to share our experience as we
collaborate to make discoveries
that could cure diseases hold back
climate change
discover or explore new planets help
turn brain data into understanding
mental health
enhance our own mental health while
we’re doing it
transform online education and make
science
that we can all trust and believe in
you are the final piece of the jigsaw in
science’s new universe
whether you are an immigrant
undergraduate student developer writing
open software at mit
or a precocious plumber’s daughter on an
island in the middle of the irish sea
thank you