0:00:00.866,0:00:02.071
As a little Hawaiian,

0:00:02.095,0:00:05.477
my mom and auntie always told me[br]stories about Kalaupapa --

0:00:05.501,0:00:06.822
the Hawaiian leper colony

0:00:06.846,0:00:09.673
surrounded by the highest[br]sea cliffs in the world --

0:00:09.697,0:00:11.109
and Father Damien,

0:00:11.133,0:00:14.561
the Belgian missionary who gave his life[br]for the Hawaiian community.

0:00:15.102,0:00:16.465
As a young nurse,

0:00:16.489,0:00:19.430
my aunt trained the nuns[br]caring for the remaining lepers

0:00:19.454,0:00:22.731
almost a 100 years after[br]Father Damien died of leprosy.

0:00:24.501,0:00:26.172
I remember stories she told

0:00:26.196,0:00:29.148
about traveling down[br]switchback cliff paths on a mule,

0:00:29.172,0:00:32.303
while my uncle played[br]her favorite hula songs on the ukulele

0:00:32.327,0:00:34.004
all the way down to Kalaupapa.

0:00:34.730,0:00:36.231
You see, as a youngster,

0:00:36.255,0:00:38.191
I was always curious about a few things.

0:00:38.681,0:00:43.731
First was why a Belgian missionary[br]chose to live in complete isolation

0:00:43.755,0:00:44.945
in Kalaupapa,

0:00:44.969,0:00:47.199
knowing he would inevitably[br]contract leprosy

0:00:47.223,0:00:49.603
from the community of people[br]he sought to help.

0:00:50.256,0:00:52.593
And secondly,

0:00:52.617,0:00:54.978
where did the leprosy bacteria come from?

0:00:55.002,0:00:56.757
And why were Kānaka Maoli,

0:00:56.781,0:00:59.030
the indigenous people of Hawaii,

0:00:59.054,0:01:03.416
so susceptible to developing[br]leprosy, or "mai Pake?"

0:01:03.853,0:01:07.583
This got my curious about what[br]makes us unique as Hawaiians --

0:01:07.607,0:01:09.448
namely, our genetic makeup.

0:01:10.964,0:01:12.908
But it wasn't until high school,

0:01:12.932,0:01:14.544
through the Human Genome Project,

0:01:14.568,0:01:16.767
that I realized I wasn't alone

0:01:16.791,0:01:19.619
in trying to connect[br]our unique genetic ancestry

0:01:19.643,0:01:23.325
to our potential health,[br]wellness and illness.

0:01:24.061,0:01:25.211
You see,

0:01:25.235,0:01:27.034
the 2.7 billion-dollar project

0:01:27.058,0:01:31.048
promised an era of predictive[br]and preventative medicine

0:01:31.072,0:01:33.485
based on our unique genetic makeup.

0:01:33.849,0:01:35.525
So to me it always seemed obvious

0:01:35.549,0:01:38.277
that in order to achieve this dream,

0:01:38.301,0:01:42.314
we would need to sequence[br]a diverse cohort of people

0:01:42.338,0:01:45.742
to obtain the full spectrum[br]of human genetic variation on the planet.

0:01:46.303,0:01:48.875
That's why 10 years later,

0:01:48.899,0:01:50.573
it continues to shock me,

0:01:50.597,0:01:53.811
knowing that 96 percent of genome studies

0:01:53.835,0:01:57.415
associating common genetic variation[br]with specific diseases

0:01:57.439,0:02:01.240
have focused exclusively[br]on individuals of European ancestry.

0:02:02.069,0:02:03.478
Now you don't need a PhD

0:02:03.502,0:02:06.535
to see that that leaves four percent[br]for the rest of diversity.

0:02:07.164,0:02:09.292
And in my own searching,

0:02:09.316,0:02:11.825
I've discovered that far less[br]than one percent

0:02:11.849,0:02:14.923
have actually focused on indigenous[br]communities, like myself.

0:02:15.481,0:02:17.528
So that begs the question:

0:02:17.552,0:02:20.099
Who is the Human Genome[br]Project actually for?

0:02:20.853,0:02:23.211
Just like we have[br]different colored eyes and hair,

0:02:23.235,0:02:24.743
we metabolize drugs differently

0:02:24.767,0:02:26.634
based on the variation in our genomes.

0:02:26.978,0:02:30.415
So how many of you[br]would be shocked to learn

0:02:30.439,0:02:33.221
that 95 percent of clinical trials

0:02:33.245,0:02:37.661
have also exclusively featured[br]individuals of European ancestry?

0:02:38.387,0:02:39.722
This bias

0:02:39.746,0:02:43.587
and systematic lack of engagement[br]of indigenous people

0:02:43.611,0:02:46.595
in both clinical trials[br]and genome studies

0:02:46.619,0:02:49.559
is partially the result[br]of a history of distrust.

0:02:50.893,0:02:52.043
For example,

0:02:52.067,0:02:55.996
in 1989, researchers[br]from Arizona State University

0:02:56.020,0:02:59.586
obtained blood samples[br]from Arizona's Havasupai tribe,

0:02:59.610,0:03:02.544
promising to alleviate the burden[br]of type 2 diabetes

0:03:02.568,0:03:04.428
that was plaguing their community,

0:03:04.452,0:03:08.337
only to turn around and use[br]those exact same samples --

0:03:08.361,0:03:10.064
without the Havasupai's consent --

0:03:10.088,0:03:13.593
to study rates[br]of schizophrenia, inbreeding,

0:03:13.617,0:03:16.592
and challenge[br]the Havasupai's origin story.

0:03:17.319,0:03:19.861
When the Havasupai found out,

0:03:19.885,0:03:23.078
they sued successfully for $700,000,

0:03:23.102,0:03:28.445
and they banned ASU from conducting[br]research on their reservation.

0:03:28.961,0:03:32.215
This culminated in a sort of domino effect

0:03:32.239,0:03:34.001
with local tribes in the Southwest --

0:03:34.025,0:03:35.454
including the Navajo Nation,

0:03:35.478,0:03:37.565
one of the largest[br]tribes in the country --

0:03:37.589,0:03:39.836
putting a moratorium on genetic research.

0:03:39.860,0:03:42.741
Now despite this history of distrust,

0:03:42.765,0:03:47.240
I still believe that indigenous people[br]can benefit from genetic research.

0:03:47.264,0:03:49.509
And if we don't do something soon,

0:03:49.533,0:03:52.400
the gap in health disparities[br]is going to continue to widen.

0:03:53.113,0:03:54.518
Hawaii, for example,

0:03:54.542,0:03:58.249
has the longest life expectancy[br]on average of any state in the US,

0:03:58.273,0:04:01.130
yet native Hawaiians like myself

0:04:01.154,0:04:04.240
die a full decade[br]before our non-native counterparts,

0:04:04.264,0:04:08.315
because we have some[br]of the highest rates of type 2 diabetes,

0:04:08.339,0:04:09.490
obesity,

0:04:09.514,0:04:12.039
and the number one and number[br]two killers in the US:

0:04:12.063,0:04:13.902
cardiovascular disease and cancer.

0:04:13.926,0:04:15.645
So how do we ensure

0:04:15.669,0:04:18.820
the populations of people[br]that need genome sequencing the most

0:04:18.844,0:04:20.264
are not the last to benefit?

0:04:20.671,0:04:25.394
My vision is to make[br]genetic research more native,

0:04:25.418,0:04:27.829
to indigenize genome[br]sequencing technology.

0:04:28.902,0:04:31.933
Traditionally, genomes[br]are sequenced in laboratories.

0:04:32.555,0:04:35.143
Here's an image of your classic[br]genome sequencer.

0:04:35.167,0:04:36.318
It's huge.

0:04:36.342,0:04:38.094
It's the size of a refrigerator.

0:04:38.750,0:04:40.817
There's this obvious physical limitation.

0:04:41.321,0:04:44.440
But what if you could sequence[br]genomes on the fly?

0:04:45.210,0:04:48.511
What if you could fit a genome[br]sequencer in your pocket?

0:04:51.848,0:04:54.246
This nanopore-based sequencer

0:04:54.270,0:04:58.755
is one 10,000th the size[br]of your traditional genome sequencer.

0:04:58.779,0:05:01.000
It doesn't have the same[br]physical limitations,

0:05:01.024,0:05:05.300
in that it's not tethered to a lab bench[br]with extraneous cords,

0:05:05.324,0:05:07.849
large vats of chemicals[br]or computer monitors.

0:05:08.456,0:05:13.607
It allows us to de-black box genome[br]sequencing technology development

0:05:13.631,0:05:16.243
in a way that's immersive[br]and collaborative,

0:05:16.267,0:05:19.005
activating and empowering[br]indigenous communities ...

0:05:20.476,0:05:21.917
as citizen scientists.

0:05:23.092,0:05:25.648
100 years later in Kalaupapa,

0:05:25.672,0:05:29.911
we now have the technology to sequence[br]leprosy bacteria in real time,

0:05:29.935,0:05:32.823
using mobile genome sequencers,

0:05:32.847,0:05:35.856
remote access to the Internet

0:05:35.880,0:05:37.292
and cloud computation.

0:05:38.440,0:05:41.028
But only if that's what[br]Hawaiian people want.

0:05:42.074,0:05:43.370
In our space,

0:05:43.394,0:05:44.844
on our terms.

0:05:46.367,0:05:52.172
IndiGenomics is about science[br]for the people by the people.

0:05:52.196,0:05:56.141
We'll be starting with a tribal[br]consultation resource,

0:05:56.165,0:05:59.376
focused on educating[br]indigenous communities

0:05:59.400,0:06:02.419
on the potential use and misuse[br]of genetic information.

0:06:02.861,0:06:06.171
Eventually we'd like to have our own[br]IndiGenomics research institute

0:06:06.195,0:06:07.624
to conduct our own experiments

0:06:07.648,0:06:10.783
and educate the next generation[br]of indigenous scientists.

0:06:11.523,0:06:13.084
In the end,

0:06:13.108,0:06:17.700
indigenous people need to be partners in[br]and not subjects of genetic research.

0:06:18.179,0:06:20.132
And for those on the outside,

0:06:20.156,0:06:21.640
just as Father Damien did,

0:06:22.625,0:06:26.983
the research community needs[br]to immerse itself in indigenous culture

0:06:27.007,0:06:28.960
or die trying.

0:06:28.984,0:06:30.189
Mahalo.

0:06:30.213,0:06:35.213
(Applause)