TED2016
Keolu Fox: Why genetic research must be more diverse
科尔卢·福克斯: 为什么基因研究要多元化
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“96%的基因组研究是根据有欧洲血统的人。世界上剩下的人几乎没有被包括在内，然而这很危险。” 基因学家和TED的成员科尔卢 福克斯说。原因是基因的组成不同 所以我们的对药物的反应也不同。福克斯正在使基因组排序本土化，特别是启发土著居民参与研究，为了减少健康差距。 “研究团体需要把自己浸泡在本土文化中，”他说“要不然就是做无用的尝试”。
Keolu Fox - Geneticist, indigenous rights activist
Keolu Fox explores the links between human genetic variation and disease in underrepresented populations. Full bio
Keolu Fox explores the links between human genetic variation and disease in underrepresented populations. Full bio
Double-click the English transcript below to play the video.
在我还是一个年幼的夏威夷人时
00:12
As a little Hawaiian,
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我的母亲和姑姑经常跟我讲关于卡劳帕帕的故事 --
00:14
my mom and auntie always told me
stories about Kalaupapa --
stories about Kalaupapa --
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那个地方充满夏威夷的麻风病患者，
00:17
the Hawaiian leper colony
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00:18
surrounded by the highest
sea cliffs in the world --
sea cliffs in the world --
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被世界上最高的悬崖包围。
还有为夏威夷社区奉献一生的比利时传教士
00:21
and Father Damien,
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00:23
the Belgian missionary who gave his life
for the Hawaiian community.
for the Hawaiian community.
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——达米安神父的故事。
我的姑姑，作为一名年轻的护士，
00:27
As a young nurse,
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00:28
my aunt trained the nuns
caring for the remaining lepers
caring for the remaining lepers
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在达米安神父死于麻风病近一百年后，
00:31
almost a 100 years after
Father Damien died of leprosy.
Father Damien died of leprosy.
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训练修女们照顾剩下的麻风病患者。
我依旧记得她讲述的故事：
00:36
I remember stories she told
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她和我的叔叔骑着骡子穿行在高低起伏的悬崖小路上。
00:38
about traveling down
switchback cliff paths on a mule,
switchback cliff paths on a mule,
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我的叔叔用尤克里里琴弹奏她最喜欢的夏威夷歌曲，
00:41
while my uncle played
her favorite hula songs on the ukulele
her favorite hula songs on the ukulele
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直到到达卡劳帕帕。
00:44
all the way down to Kalaupapa.
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00:46
You see, as a youngster,
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作为一个儿童，
我一直对一些事情感到好奇。
00:48
I was always curious about a few things.
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首先，为什么一个比利时传教士要选择
00:50
First was why a Belgian missionary
chose to live in complete isolation
chose to live in complete isolation
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在卡劳帕帕住着与世隔绝的生活，
00:55
in Kalaupapa,
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并且不可避免会从他帮助的社区里的人们那里
00:56
knowing he would inevitably
contract leprosy
contract leprosy
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00:59
from the community of people
he sought to help.
he sought to help.
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传染到麻风病。
还有，
01:02
And secondly,
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卡劳帕帕的麻风病菌是哪里来的？
01:04
where did the leprosy bacteria come from?
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为什么夏威夷的土著居民
01:07
And why were Kānaka Maoli,
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01:08
the indigenous people of Hawaii,
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如此容易受到麻风病的感染？
01:11
so susceptible to developing
leprosy, or "mai Pake?"
leprosy, or "mai Pake?"
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或者 “麻风病“ (夏威夷语)。
这让我好奇
01:15
This got my curious about what
makes us unique as Hawaiians --
makes us unique as Hawaiians --
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是什么让我们夏威夷人不同？
答案就是我们的基因。
01:19
namely, our genetic makeup.
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01:22
But it wasn't until high school,
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但是直到高中，
通过一个人类基因组的项目，
01:24
through the Human Genome Project,
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我才发现
01:26
that I realized I wasn't alone
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我并不是唯一一个
想要追溯我们特有的基因祖先，
01:28
in trying to connect
our unique genetic ancestry
our unique genetic ancestry
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01:31
to our potential health,
wellness and illness.
wellness and illness.
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为了了解我们的潜在健康和疾病。
01:36
You see,
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要知道，
这个27亿美元的计划
01:37
the 2.7 billion-dollar project
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在研究我们特有基因的基础上
01:39
promised an era of predictive
and preventative medicine
and preventative medicine
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保证了一个可预测，可预防的医疗时代。
01:43
based on our unique genetic makeup.
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显而易见，
01:45
So to me it always seemed obvious
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为了要完成这一个梦想，
01:47
that in order to achieve this dream,
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我们需要排列一群不同的人
01:50
we would need to sequence
a diverse cohort of people
a diverse cohort of people
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来取得地球上变化多样的人类基因的遗传谱。
01:54
to obtain the full spectrum
of human genetic variation on the planet.
of human genetic variation on the planet.
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01:58
That's why 10 years later,
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这就是为什么10年后，
我不断被惊讶，
02:00
it continues to shock me,
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02:02
knowing that 96 percent of genome studies
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发现96%与特定疾病有关的基因多样性的实验
02:05
associating common genetic variation
with specific diseases
with specific diseases
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都只研究了祖先是欧洲人的人群。
02:09
have focused exclusively
on individuals of European ancestry.
on individuals of European ancestry.
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02:14
Now you don't need a PhD
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你不需要一个博士学位都能发现
02:15
to see that that leaves four percent
for the rest of diversity.
for the rest of diversity.
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其他的种族只有4%。
在我自己的研究里，
02:19
And in my own searching,
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我发现远不到1%的研究
02:21
I've discovered that far less
than one percent
than one percent
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是专注于像我一样的土著居民。
02:23
have actually focused on indigenous
communities, like myself.
communities, like myself.
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所以我要问一个问题：
02:27
So that begs the question:
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02:29
Who is the Human Genome
Project actually for?
Project actually for?
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人类基因组计划究竟是为了谁？
就像我们有着不同颜色的眼睛和头发一样，
02:32
Just like we have
different colored eyes and hair,
different colored eyes and hair,
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02:35
we metabolize drugs differently
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根据我们的基因组
02:36
based on the variation in our genomes.
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我们对药物的新陈代谢不同。
所以我不知道你们会多惊讶
02:38
So how many of you
would be shocked to learn
would be shocked to learn
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95%的医疗临床试验
02:42
that 95 percent of clinical trials
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02:45
have also exclusively featured
individuals of European ancestry?
individuals of European ancestry?
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也是专门为欧洲血统的人。
02:50
This bias
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这一不公平
02:51
and systematic lack of engagement
of indigenous people
of indigenous people
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和缺少对土著居民的系统研究
在医疗临床和基因研究领域
02:55
in both clinical trials
and genome studies
and genome studies
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都是造成历史上种族不信任的部分原因。
02:58
is partially the result
of a history of distrust.
of a history of distrust.
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举个例子，
03:02
For example,
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1989年，亚利桑那州州立大学的研究者们
03:04
in 1989, researchers
from Arizona State University
from Arizona State University
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在亚利桑那州哈瓦苏部落
03:08
obtained blood samples
from Arizona's Havasupai tribe,
from Arizona's Havasupai tribe,
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采集了血样
保证减轻在社区横行的2型糖尿病。
03:11
promising to alleviate the burden
of type 2 diabetes
of type 2 diabetes
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03:14
that was plaguing their community,
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但是却在没有哈瓦苏人的同意下，
03:16
only to turn around and use
those exact same samples --
those exact same samples --
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用这些血样
03:20
without the Havasupai's consent --
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来学习精神分裂症和近亲繁殖的概率，
03:22
to study rates
of schizophrenia, inbreeding,
of schizophrenia, inbreeding,
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03:25
and challenge
the Havasupai's origin story.
the Havasupai's origin story.
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并且挑战哈瓦苏部落的起源。
当哈瓦苏人发现的时候，
03:29
When the Havasupai found out,
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他们成功起诉，获得了70万美元的罚款，
03:31
they sued successfully for $700,000,
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还禁止亚利桑那州立大学对其部落的研究。
03:35
and they banned ASU from conducting
research on their reservation.
research on their reservation.
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这件事在美国西南造成了多米诺效应，
03:40
This culminated in a sort of domino effect
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03:44
with local tribes in the Southwest --
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包括美国最大的部落：
03:46
including the Navajo Nation,
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03:47
one of the largest
tribes in the country --
tribes in the country --
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纳瓦霍族。
他们叫停了一个基因的研究。
03:49
putting a moratorium on genetic research.
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现在，不管那段充满着怀疑的历史，
03:51
Now despite this history of distrust,
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我依旧相信，土著居民能够从基因研究中获利。
03:54
I still believe that indigenous people
can benefit from genetic research.
can benefit from genetic research.
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如果我们不尽快采取行动，
03:59
And if we don't do something soon,
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04:01
the gap in health disparities
is going to continue to widen.
is going to continue to widen.
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医疗健康差距的鸿沟将越来越宽。
拿夏威夷举个例子，
04:05
Hawaii, for example,
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在美国所有州中，夏威夷是最长寿的州。
04:06
has the longest life expectancy
on average of any state in the US,
on average of any state in the US,
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04:10
yet native Hawaiians like myself
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但是像我这样的夏威夷人
比非土著人早整整10年去世。
04:13
die a full decade
before our non-native counterparts,
before our non-native counterparts,
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因为我们有2型糖尿病、肥胖症，
04:16
because we have some
of the highest rates of type 2 diabetes,
of the highest rates of type 2 diabetes,
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和美国头号和二号杀手疾病：
04:20
obesity,
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04:21
and the number one and number
two killers in the US:
two killers in the US:
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心血管疾病和癌症的最高发病率。
04:24
cardiovascular disease and cancer.
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所以，我们该如何保证
04:25
So how do we ensure
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最需要基因组序列的人群
04:27
the populations of people
that need genome sequencing the most
that need genome sequencing the most
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不是最后获益的。
04:30
are not the last to benefit?
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04:32
My vision is to make
genetic research more native,
genetic research more native,
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我的愿望是想让基因研究更贴近当地，
来本地化基因序列研究。
04:37
to indigenize genome
sequencing technology.
sequencing technology.
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一般来说，基因序列会在实验室被排序。
04:40
Traditionally, genomes
are sequenced in laboratories.
are sequenced in laboratories.
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这是一张有关基因序列测定仪的照片。
04:44
Here's an image of your classic
genome sequencer.
genome sequencer.
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它十分巨大，
04:47
It's huge.
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04:48
It's the size of a refrigerator.
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有一个冰箱大小。
很明显，它对空间有一定限制。
04:50
There's this obvious physical limitation.
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但是，如果你能在飞机上使用基因序列测定仪，
04:53
But what if you could sequence
genomes on the fly?
genomes on the fly?
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如果你能用口袋装下一个基因序列测定仪，
04:57
What if you could fit a genome
sequencer in your pocket?
sequencer in your pocket?
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这个纳米孔测序仪
05:03
This nanopore-based sequencer
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只有传统基因序列测定仪的万分之一大小。
05:06
is one 10,000th the size
of your traditional genome sequencer.
of your traditional genome sequencer.
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它没有很多对空间的限制，
05:10
It doesn't have the same
physical limitations,
physical limitations,
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它不需要被绳子拴在实验室的长凳上，
05:13
in that it's not tethered to a lab bench
with extraneous cords,
with extraneous cords,
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05:17
large vats of chemicals
or computer monitors.
or computer monitors.
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它无需大量的化学物质和电脑显示器，
它能让我们以仿真和协作的方式
05:20
It allows us to de-black box genome
sequencing technology development
sequencing technology development
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来排列基因。
05:25
in way that's immersive and collaborative,
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让土著居民有动力和能力研究基因序列，
05:28
activating and empowering
indigenous communities ...
indigenous communities ...
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让他们成为科学家。
05:32
as citizen scientists.
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05:35
100 years later in Kalaupapa,
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100百年后的卡劳帕帕，
我们已经有能够实实在在研究麻风病病菌基因序列的科技，
05:37
we now have the technology to sequence
leprosy bacteria in real time,
leprosy bacteria in real time,
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能够使用可移动的基因序列测定仪。
05:41
using mobile genome sequencers,
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通过网络，远程存取
05:44
remote access to the Internet
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05:47
and cloud computation.
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以及云计算。
只要那真的是夏威夷人所想要的。
05:50
But only if that's what
Hawaiian people want.
Hawaiian people want.
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在我们存在的宇宙里，
05:54
In our space,
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在我们的人生里，
05:55
on our terms.
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本土基因学是为了提高少数人的健康的科学。
05:58
IndiGenomics is about science
for the people by the people.
for the people by the people.
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我们会从举办一个部落咨询会开始，
06:04
We'll be starting with a tribal
consultation resource,
consultation resource,
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注重教育土著社区
06:08
focused on educating
indigenous communities
indigenous communities
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正当和不当使用基因信息的影响。
06:11
on the potential use and misuse
of genetic information.
of genetic information.
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最终，我们想要成立我们自己的本土基因研究院
06:14
Eventually we'd like to have our own
IndiGenomics research institute
IndiGenomics research institute
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来进行我们自己的研究。
06:18
to conduct our own experiments
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06:19
and educate the next generation
of indigenous scientists.
of indigenous scientists.
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同时，也要教导下一代土著科学家。
最后，土著居民应该成为基因研究的成员，
而不是对象。
而不是对象。
06:23
In the end,
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06:25
indigenous people need to be partners in
and not subjects of genetic research.
and not subjects of genetic research.
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对于那些不是土著居民的人来说，
06:30
And for those on the outside,
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应该学习神父达米安那样做，
06:32
just as Father Damien did,
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研究团体需要把自己浸泡在土著文化中，
06:34
the research community needs
to immerse itself in indigenous culture
to immerse itself in indigenous culture
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不顾一切地去尝试。
06:39
or die trying.
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06:40
Mahalo.
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谢谢 ！(夏威夷语)
06:42
(Applause)
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（掌声）
Translated by Tony Yet
ABOUT THE SPEAKER
Keolu Fox - Geneticist, indigenous rights activistKeolu Fox explores the links between human genetic variation and disease in underrepresented populations.
Why you should listen
Keolu Fox's research interests include genome sequencing technologies, genome editing and indigenizing medical research. Fox is currently a PhD Candidate at the University of Washington, Department of Genome Sciences working with experts at Bloodworks Northwest, in Seattle, WA. His work focuses on the application of genome sequencing to increase compatibility for blood transfusion therapy and organ transplantation.
Along with fellow indigenous geneticists Katrina Claw (PhD) and Joe Yracheta, Fox co-founded IndiGenomics, a tribal non-profit organization with a mission of bringing genomic expertise to indigenous communities, empowering indigenous research capacity and positively contributing to health research with indigenous communities for present and future generations.
Recently Fox's work has been in the international media spotlight, with recognition in outlets such as Wired, the BBC, CBC, NPR, The Atlantic, Forbes, Indian Country Today and others. He was named a TED Fellow in 2016.
Keolu Fox | Speaker | TED.com