WEBVTT

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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, or "mai Pake?"

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This got my curious about what
makes us unique as Hawaiians --

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namely, 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, 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, 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, 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 ensure

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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 nanopore-based sequencer

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is one 10,000th the size
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
or computer monitors.

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It allows us to de-black box genome
sequencing technology development

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in a 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 Damien 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)