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As a little Hawaiian,
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my mom and auntie always told me
stories about Kalaupapa --
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the Hawaiian leper colony
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surrounded by the highest
sea cliffs in the world --
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and Father Damien,
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the Belgian missionary who gave his life
for the Hawaiian community.
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As a young nurse,
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my aunt trained the nuns
caring for the remaining lepers
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almost a 100 years after
Father Damien died of leprosy.
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I remember stories she told
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about traveling down switchback
cliff paths on a mule,
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while my uncle played her favorite
hula songs on the ukulele
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all the way down to Kalaupapa.
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You see as a youngster,
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I was always curious about a few things.
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First was why a Belgian missionary
chose to live in complete isolation
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in Kalaupapa,
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knowing he would inevitably
contract leprosy
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from the community of people
he sought to help.
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And secondly,
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where did the leprosy bacteria come from?
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And why were Kānaka Maoli,
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the indigenous people of Hawaii,
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so susceptible to developing leprosy --
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or mai Pake?
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This got my curious about what
makes us unique as Hawaiians,
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namely,
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our genetic makeup.
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But it wasn't until high school,
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through the Human Genome Project,
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that I realized I wasn't alone
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in trying to connect
our unique genetic ancestry
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to our potential health,
wellness and illness.
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You see,
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the 2.7 billion-dollar project
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promised an era of predictive
and preventative medicine
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based on our unique genetic makeup.
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So to me it always seemed obvious
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that in order to achieve this dream,
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we would need to sequence
a diverse cohort of people
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to obtain the full spectrum of human
genetic variation on the planet.
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That's why 10 years later,
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it continues to shock me,
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knowing that 96 percent of genome studies
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associating common genetic variation
with specific diseases
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have focused exclusively
on individuals of European ancestry.
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Now you don't need a PhD
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to see that that leaves four percent
for the rest of diversity.
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And in my own searching,
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I've discovered that far less
than one percent
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have actually focused on
indigenous communities,
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like myself.
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So that begs the question:
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who is the Human Genome
Project actually for?
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Just like we have different
colored eyes and hair,
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we metabolize drugs differently
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based on the variation in our genomes.
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So how many of you
would be shocked to learn
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that 95 percent of clinical trials
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have also exclusively featured
individuals of European ancestry?
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This bias
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and systematic lack of engagement
of indigenous people,
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in both clinical trials
and genome studies,
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is partially the result
of a history of distrust.
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For example:
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in 1989,
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researchers from Arizona State University
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obtained blood samples
from Arizona's Havasupai Tribe,
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promising to alleviate the burden
of Type 2 Diabetes
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that was plaguing their community,
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only to turn around and use
those exact same samples --
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without the Havasupai's consent --
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to study rates of schizophrenia,
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inbreeding,
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and challenge the
Havasupai's origin story.
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When the Havasupai found out,
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they sued successfully for $700,000,
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and they banned ASU from conducting
research on their reservation.
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This culminated in a sort of domino effect
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with local tribes in the Southwest,
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including the Navajo Nation --
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one of the largest
tribes in the country --
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putting a moratorium on genetic research.
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Now despite this history of distrust,
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I still believe that indigenous people
can benefit from genetic research.
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And if we don't do something soon,
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the gap in health disparities
is going to continue to widen.
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Hawaii for example,
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has the longest life expectancy
on average of any state in the US,
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yet native Hawaiians like myself,
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die a full decade before our
non-native counterparts,
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because we have some of the highest
rates of Type 2 Diabetes,
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obesity,
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and the number one and number
two killers in the US:
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cardiovascular disease and cancer.
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So how do we insure
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[that] the populations of people
that need genome sequencing the most
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are not the last to benefit?
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My vision is to make
genetic research more native,
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to indigenize genome
sequencing technology.
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Traditionally, genomes
are sequenced in laboratories.
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Here's an image of your
classic genome sequencer.
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It's huge.
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It's the size of a refrigerator.
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There's this obvious physical limitation.
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But what if you could sequence
genomes on the fly?
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What if you could fit a genome
sequencer in your pocket?
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This nanapore-based sequencer
is one 10,000th the size
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of your traditional genome sequencer.
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It doesn't have the same
physical limitations
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in that it's not tethered to a lab bench
with extraneous cords,
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large vats of chemicals,
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or computer monitors.
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It allows us to de-black box genome
sequencing technology development
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in way that's immersive and collaborative,
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activating and empowering
indigenous communities ...
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as citizen scientists.
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100 years later in Kalaupapa,
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we now have the technology to sequence
leprosy bacteria in real time,
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using mobile genome sequencers,
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remote access to the Internet
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and cloud computation.
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But only if that's what
Hawaiian people want.
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In our space,
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on our terms.
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IndiGenomics is about science
for the people by the people.
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We'll be starting with a tribal
consultation resource,
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focused on educating
indigenous communities
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on the potential use and misuse
of genetic information.
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Eventually we'd like to have our own
IndiGenomics research institute
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to conduct our own experiments
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and educate the next generation
of indigenous scientists.
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In the end,
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indigenous people need to be partners in
and not subjects of genetic research.
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And for those on the outside,
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just as Father Damian did,
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the research community needs
to immerse itself in indigenous culture
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or die trying.
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Mahalo.
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(Applause)