Why genetic research must be more diverse
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0:01 - 0:02As a little Hawaiian,
-
0:02 - 0:05my mom and auntie always told me
stories about Kalaupapa -- -
0:06 - 0:07the Hawaiian leper colony
-
0:07 - 0:10surrounded by the highest
sea cliffs in the world -- -
0:10 - 0:11and Father Damien,
-
0:11 - 0:15the Belgian missionary who gave his life
for the Hawaiian community. -
0:15 - 0:16As a young nurse,
-
0:16 - 0:19my aunt trained the nuns
caring for the remaining lepers -
0:19 - 0:23almost a 100 years after
Father Damien died of leprosy. -
0:25 - 0:26I remember stories she told
-
0:26 - 0:29about traveling down
switchback cliff paths on a mule, -
0:29 - 0:32while my uncle played
her favorite hula songs on the ukulele -
0:32 - 0:34all the way down to Kalaupapa.
-
0:35 - 0:36You see, as a youngster,
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0:36 - 0:38I was always curious about a few things.
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0:39 - 0:44First was why a Belgian missionary
chose to live in complete isolation -
0:44 - 0:45in Kalaupapa,
-
0:45 - 0:47knowing he would inevitably
contract leprosy -
0:47 - 0:50from the community of people
he sought to help. -
0:50 - 0:53And secondly,
-
0:53 - 0:55where did the leprosy bacteria come from?
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0:55 - 0:57And why were Kānaka Maoli,
-
0:57 - 0:59the indigenous people of Hawaii,
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0:59 - 1:03so susceptible to developing
leprosy, or "mai Pake?" -
1:04 - 1:08This got my curious about what
makes us unique as Hawaiians -- -
1:08 - 1:09namely, our genetic makeup.
-
1:11 - 1:13But it wasn't until high school,
-
1:13 - 1:15through the Human Genome Project,
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1:15 - 1:17that I realized I wasn't alone
-
1:17 - 1:20in trying to connect
our unique genetic ancestry -
1:20 - 1:23to our potential health,
wellness and illness. -
1:24 - 1:25You see,
-
1:25 - 1:27the 2.7 billion-dollar project
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1:27 - 1:31promised an era of predictive
and preventative medicine -
1:31 - 1:33based on our unique genetic makeup.
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1:34 - 1:36So to me it always seemed obvious
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1:36 - 1:38that in order to achieve this dream,
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1:38 - 1:42we would need to sequence
a diverse cohort of people -
1:42 - 1:46to obtain the full spectrum
of human genetic variation on the planet. -
1:46 - 1:49That's why 10 years later,
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1:49 - 1:51it continues to shock me,
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1:51 - 1:54knowing that 96 percent of genome studies
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1:54 - 1:57associating common genetic variation
with specific diseases -
1:57 - 2:01have focused exclusively
on individuals of European ancestry. -
2:02 - 2:03Now you don't need a PhD
-
2:04 - 2:07to see that that leaves four percent
for the rest of diversity. -
2:07 - 2:09And in my own searching,
-
2:09 - 2:12I've discovered that far less
than one percent -
2:12 - 2:15have actually focused on indigenous
communities, like myself. -
2:15 - 2:18So that begs the question:
-
2:18 - 2:20Who is the Human Genome
Project actually for? -
2:21 - 2:23Just like we have
different colored eyes and hair, -
2:23 - 2:25we metabolize drugs differently
-
2:25 - 2:27based on the variation in our genomes.
-
2:27 - 2:30So how many of you
would be shocked to learn -
2:30 - 2:33that 95 percent of clinical trials
-
2:33 - 2:38have also exclusively featured
individuals of European ancestry? -
2:38 - 2:40This bias
-
2:40 - 2:44and systematic lack of engagement
of indigenous people -
2:44 - 2:47in both clinical trials
and genome studies -
2:47 - 2:50is partially the result
of a history of distrust. -
2:51 - 2:52For example,
-
2:52 - 2:56in 1989, researchers
from Arizona State University -
2:56 - 3:00obtained blood samples
from Arizona's Havasupai tribe, -
3:00 - 3:03promising to alleviate the burden
of type 2 diabetes -
3:03 - 3:04that was plaguing their community,
-
3:04 - 3:08only to turn around and use
those exact same samples -- -
3:08 - 3:10without the Havasupai's consent --
-
3:10 - 3:14to study rates
of schizophrenia, inbreeding, -
3:14 - 3:17and challenge
the Havasupai's origin story. -
3:17 - 3:20When the Havasupai found out,
-
3:20 - 3:23they sued successfully for $700,000,
-
3:23 - 3:28and they banned ASU from conducting
research on their reservation. -
3:29 - 3:32This culminated in a sort of domino effect
-
3:32 - 3:34with local tribes in the Southwest --
-
3:34 - 3:35including the Navajo Nation,
-
3:35 - 3:38one of the largest
tribes in the country -- -
3:38 - 3:40putting a moratorium on genetic research.
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3:40 - 3:43Now despite this history of distrust,
-
3:43 - 3:47I still believe that indigenous people
can benefit from genetic research. -
3:47 - 3:50And if we don't do something soon,
-
3:50 - 3:52the gap in health disparities
is going to continue to widen. -
3:53 - 3:55Hawaii, for example,
-
3:55 - 3:58has the longest life expectancy
on average of any state in the US, -
3:58 - 4:01yet native Hawaiians like myself
-
4:01 - 4:04die a full decade
before our non-native counterparts, -
4:04 - 4:08because we have some
of the highest rates of type 2 diabetes, -
4:08 - 4:09obesity,
-
4:10 - 4:12and the number one and number
two killers in the US: -
4:12 - 4:14cardiovascular disease and cancer.
-
4:14 - 4:16So how do we ensure
-
4:16 - 4:19the populations of people
that need genome sequencing the most -
4:19 - 4:20are not the last to benefit?
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4:21 - 4:25My vision is to make
genetic research more native, -
4:25 - 4:28to indigenize genome
sequencing technology. -
4:29 - 4:32Traditionally, genomes
are sequenced in laboratories. -
4:33 - 4:35Here's an image of your classic
genome sequencer. -
4:35 - 4:36It's huge.
-
4:36 - 4:38It's the size of a refrigerator.
-
4:39 - 4:41There's this obvious physical limitation.
-
4:41 - 4:44But what if you could sequence
genomes on the fly? -
4:45 - 4:49What if you could fit a genome
sequencer in your pocket? -
4:52 - 4:54This nanopore-based sequencer
-
4:54 - 4:59is one 10,000th the size
of your traditional genome sequencer. -
4:59 - 5:01It doesn't have the same
physical limitations, -
5:01 - 5:05in that it's not tethered to a lab bench
with extraneous cords, -
5:05 - 5:08large vats of chemicals
or computer monitors. -
5:08 - 5:14It allows us to de-black box genome
sequencing technology development -
5:14 - 5:16in a way that's immersive
and collaborative, -
5:16 - 5:19activating and empowering
indigenous communities ... -
5:20 - 5:22as citizen scientists.
-
5:23 - 5:26100 years later in Kalaupapa,
-
5:26 - 5:30we now have the technology to sequence
leprosy bacteria in real time, -
5:30 - 5:33using mobile genome sequencers,
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5:33 - 5:36remote access to the Internet
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5:36 - 5:37and cloud computation.
-
5:38 - 5:41But only if that's what
Hawaiian people want. -
5:42 - 5:43In our space,
-
5:43 - 5:45on our terms.
-
5:46 - 5:52IndiGenomics is about science
for the people by the people. -
5:52 - 5:56We'll be starting with a tribal
consultation resource, -
5:56 - 5:59focused on educating
indigenous communities -
5:59 - 6:02on the potential use and misuse
of genetic information. -
6:03 - 6:06Eventually we'd like to have our own
IndiGenomics research institute -
6:06 - 6:08to conduct our own experiments
-
6:08 - 6:11and educate the next generation
of indigenous scientists. -
6:12 - 6:13In the end,
-
6:13 - 6:18indigenous people need to be partners in
and not subjects of genetic research. -
6:18 - 6:20And for those on the outside,
-
6:20 - 6:22just as Father Damien did,
-
6:23 - 6:27the research community needs
to immerse itself in indigenous culture -
6:27 - 6:29or die trying.
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6:29 - 6:30Mahalo.
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6:30 - 6:35(Applause)
- Title:
- Why genetic research must be more diverse
- Speaker:
- Keolu Fox
- Description:
-
Ninety-six percent of genome studies are based on people of European descent. The rest of the world is virtually unrepresented -- and this is dangerous, says geneticist and TED Fellow Keolu Fox, because we react to drugs differently based on our genetic makeup. Fox is working to democratize genome sequencing, specifically by advocating for indigenous populations to get involved in research, with the goal of eliminating health disparities. "The research community needs to immerse itself in indigenous culture," he says, "or die trying."
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 06:48
Brian Greene edited English subtitles for Why genetic research must be more diverse | ||
Brian Greene edited English subtitles for Why genetic research must be more diverse | ||
Brian Greene edited English subtitles for Why genetic research must be more diverse | ||
Brian Greene approved English subtitles for Why genetic research must be more diverse | ||
Brian Greene edited English subtitles for Why genetic research must be more diverse | ||
Brian Greene edited English subtitles for Why genetic research must be more diverse | ||
Krystian Aparta accepted English subtitles for Why genetic research must be more diverse | ||
Krystian Aparta edited English subtitles for Why genetic research must be more diverse |