0:00:00.866,0:00:01.965
As a little Hawaiian,

0:00:01.965,0:00:05.501
my mom and auntie always told me[br]stories about Kalaupapa --

0:00:05.501,0:00:06.846
the Hawaiian leper colony

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surrounded by the highest[br]sea cliffs in the world --

0:00:09.697,0:00:11.133
and Father Damien,

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the Belgian missionary who gave his life[br]for the Hawaiian community.

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As a young nurse,

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my aunt trained the nuns[br]caring for the remaining lepers

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almost a 100 years after[br]Father Damien died of leprosy.

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I remember stories she told

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about traveling down switchback[br]cliff paths on a mule,

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while my uncle played her favorite[br]hula songs on the ukulele

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all the way down to Kalaupapa.

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You see as a youngster,

0:00:36.386,0:00:38.778
I was always curious about a few things.

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First was why a Belgian missionary[br]chose to live in complete isolation

0:00:43.785,0:00:44.815
in Kalaupapa,

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knowing he would inevitably[br]contract leprosy

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from the community of people[br]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[br]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[br]our unique genetic ancestry

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to our potential health,[br]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[br]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[br]a diverse cohort of people

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to obtain the full spectrum of human[br]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[br]with specific diseases

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have focused exclusively[br]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[br]for the rest of diversity.

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And in my own searching,

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I've discovered that far less[br]than one percent

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have actually focused on[br]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[br]Project actually for?

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Just like we have different[br]colored eyes and hair,

0:02:23.402,0:02:24.909
we metabolize drugs differently

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based on the variation in our genomes.

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So how many of you[br]would be shocked to learn

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that 95 percent of clinical trials

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have also exclusively featured[br]individuals of European ancestry?

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This bias

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and systematic lack of engagement[br]of indigenous people,

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in both clinical trials[br]and genome studies,

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is partially the result[br]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

0:02:56.328,0:02:59.893
obtained blood samples[br]from Arizona's Havasupai Tribe,[br]

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promising to alleviate the burden[br]of Type 2 Diabetes

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that was plaguing their community,

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only to turn around and use[br]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[br]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[br]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[br]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[br]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[br]is going to continue to widen.

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Hawaii for example,

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has the longest life expectancy[br]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[br]non-native counterparts,

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because we have some of the highest[br]rates of Type 2 Diabetes,

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obesity,

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and the number one and number[br]two killers in the US:

0:04:11.976,0:04:13.979
cardiovascular disease and cancer.

0:04:13.979,0:04:15.669
So how do we insure

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[that] the populations of people[br]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[br]genetic research more native,

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to indigenize genome[br]sequencing technology.

0:04:28.794,0:04:32.344
Traditionally, genomes[br]are sequenced in laboratories.

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Here's an image of your[br]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[br]genomes on the fly?

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What if you could fit a genome[br]sequencer in your pocket?

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This nanapore-based sequencer[br]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[br]physical limitations

0:05:01.316,0:05:05.499
in that it's not tethered to a lab bench[br]with extraneous cords,

0:05:05.499,0:05:06.753
large vats of chemicals,

0:05:06.753,0:05:08.251
or computer monitors.

0:05:08.674,0:05:13.774
It allows us to de-black box genome[br]sequencing technology development

0:05:13.774,0:05:16.544
in way that's immersive and collaborative,

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activating and empowering[br]indigenous communities ...

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as citizen scientists.

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100 years later in Kalaupapa,

0:05:25.933,0:05:30.171
we now have the technology to sequence[br]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[br]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[br]for the people by the people.

0:05:52.326,0:05:56.382
We'll be starting with a tribal[br]consultation resource,

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focused on educating[br]indigenous communities

0:05:59.512,0:06:02.531
on the potential use and misuse[br]of genetic information.

0:06:03.007,0:06:06.195
Eventually we'd like to have our own[br]IndiGenomics research institute

0:06:06.195,0:06:07.647
to conduct our own experiments

0:06:07.647,0:06:11.065
and educate the next generation[br]of indigenous scientists.

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In the end,

0:06:13.401,0:06:17.993
indigenous people need to be partners in[br]and not subjects of genetic research.

0:06:18.351,0:06:20.307
And for those on the outside,

0:06:20.307,0:06:22.751
just as Father Damian did,

0:06:22.751,0:06:27.108
the research community needs[br]to immerse itself in indigenous culture

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or die trying.

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Mahalo.

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(Applause)